Cathi Maynard Reboots

1.14 - Mom's Passing

2011-01-14T22:25:00.003-06:00

There are a number of things to state here, but fundamentally I want to express to everyone just how beautiful and graceful mom leaving Earth behind was.

At 7 PM on 12.31.10, while writing her obituary I had writer's block. It's a good thing b/c I went to sit beside Mom for inspiration. When I picked up her hand, it was much cooler than normal and I noticed her color had changed similar to the modeling we'd read about. I got Mark, called her parents, several other people she wanted to be present when she passed, and called Hospice since they committed to 24 x 7 care the remainder of the time. I honestly believed she had several hours. However most everyone arrived by 7:30 and at 7:36, she was gone.

Mom leaving was amazing. We had prayed a Hail Mary and Our Father and were there to say goodbye. She did not struggle and ultimately exhaled her last breathe without getting another. Shortly thereafter we popped a bottle of champagne and toasted her new life in honor of her and New Year's Eve. I described it as her last hosted party. So cool.

From there, a number of things happened. The thing I want to share which could not have been more perfect was her physically leaving her house the last time. Funeral home guys had shown up to pick her body up and being someone who has to see everything, I stepped outside to watch her body loaded into the minivan (white - just like hers). I had to laugh. The van which carried her body away had a KState license plate frame - just like the KState stickers on her own van! It could not have been more perfect and was as if she was driving her own van away.

I'll write another post soon which will have more of the information related to her funeral for those that were not able to attend, especially the Prayers for the Faithful and the letter Mark and I wrote for her funeral mass. A sneak preview is that it was an amazing 3 days and I only wish that I had video of it b/c we were all very emotional yet were told numerous times just how beautiful it was...just like she planned it.

1.8 - Tribute Video from Funeral Receptions

2011-01-08T20:53:00.003-06:00

We haven't really collected enough thoughts to write, but there are a few of us family members that will have some pots. In the meantime I wanted to post the video that was shown at mom's funeral receptions and was running at the visitation w/o sound. Her cousin, Gail, put it together after a lot of chats with Mom and some pictures. It's touching and I'd highly recommend a Kleenex!

http://vimeo.com/18416011

1.2 - Obituary

2011-01-02T09:56:00.003-06:00

Tomorrow's will have a photo, but here's the text from and link to Mom's obituary.

http://www.legacy.com/obituaries/kansascity/obituary.aspx?page=lifestory&pid=147519421

Cathi Snell Maynard went to join our Heavenly Father on December 31, 2010, surrounded by family, after a two and a half year battle with Leukemia. She was born December 30, 1953, in Manhattan, KS, to Virgil and Jane DeVore Snell, and was the oldest of 7 children. She lived each and every day to the fullest and touched everyone who knew her. Her life was full of family, travel, culture, Kansas City Chiefs games, and a love of entertaining that will forever be remembered by those who were fortunate enough to enjoy her events.

Cathi spent her early career in a variety of roles, including one as a legal assistant. She then recognized the computer evolution and in 1989 accepted a position at Shook, Hardy, and Bacon as a Litigation Support Manager in their IT department, bringing her family back to Kansas City. As a single, working parent with two sons, she completed a General Business Bachelors degree from Oklahoma City University during this time. Kansas City and a vast personal and professional network propelled her to a full-time IT career, resulting in her starting her own boutique consulting company focusing on several prominent KC law firms as well as other businesses. She led Network Applications Consulting as President from the early '00s until her death.

Cathi's thirst for adventure was well- documented through pictures, emails, and friends. She traveled all over Europe including a D-Day tour with her Veteran father and uncle. Her adventures also led her through countless campsites, rivers, lakes, and wildlife exposure - most of them with the Boy Scouts of Troop 91 where she mentored many young Scouts. She canoed and hiked the Boundary Waters area of Northern Minnesota, but her greatest achievement among these was Project Cope - a challenging team-building course she completed and was always extremely proud of.

She was preceded in death by grandparents Walter and Margaret Drauden Snell and John and Beatrice Johnson DeVore. She is survived by Son Conor Maynard and wife Annie of Chicago, their children Harrison Bradley and Ella Catherine, Son Mark Maynard of Oklahoma City, Parents Virgil and Jane Devore Snell, siblings Mari Yearout, Janice Schlichting, Lori Offutt, Rhonda Anawalt, Patricia Moore and Walt Snell, Godsons Anthony Snell and Mason Offutt, and many other relatives including 23 nieces and nephews. Visitation will be Tuesday, January 4, from 5-8 p.m. at the McGilley and Hoge Chapel, where the Tribe of Mic-O-Say Memorial Service will be at 6:00 p.m. and the rosary will be prayed at 7:00 p.m. Mass of Christian Burial will be 10:00 a.m. Wednesday, January 5, at Ascension Catholic Church. There will be a reception celebrating her life following. Burial will be Thursday, January 6, in Winfield, KS, at Highland Cemetery. In lieu of flowers, please consider donating on behalf of Cathi Maynard to the Leukemia and Lymphoma Society at 6811 Shawnee Mission Parkway, Shawnee Mission, KS 66202.

1.1 - Funeral Details

2011-01-01T21:03:00.002-06:00

Here are the confirmed details for Mom's funeral services. We have the Ark City / Winfield reception location pending, but otherwise are fairly set now. Feel free to use the earlier posted bereavement travel desk. I used them and secured some good flight times, costs, and flexibility (no cost for flight changes), but I know some others got better flight times directly through the airlines. These details will also be in tomorrow's Kansas City Star obituary with the accompanying picture in Monday's paper.

Tues, 1.4
- 5 - 8 PM: Visitation and Rosary at McGilley & Hogue Chapel in Overland Park - 8024 Santa Fe Drive
- 6 PM: The Boy Scouts will perform the Mic-o-say memorial ceremony (all are welcome)
- 7 PM: Rosary

Wed, 1.5
- 10 AM: Funeral at Church of the Ascension (9510 W 127th St)
- Reception following at the church

Thurs, 1.6
- 10 AM: Meeting at Swisher-Taylor funeral home in Winfield (803 Loomis St) for processional to Highland Cemetery
- 10:30 AM: Burial
- Reception following - location TBD

12.31 - A New Life Begins

2010-12-31T21:37:00.002-06:00

Well a little faster than we imagined, Mom has gone home to Heaven. I'll have a more detailed write-up of everything tonight, but she passed at 7:36 PM surrounded by many of us. In the meantime, I wanted to post tentative funeral arrangements. These are yet to be confirmed, but I know many would like to make plans and / or have heard from family members so I wanted to get in front of it.

Tuesday Evening, 1.4: Visitation, Rosary, and a Boy Scout Memorial
Wednesday, 1.5 (TBD - targeting mid-morning): Funeral service at Church of the Ascension in Overland Park, KS followed by a reception and meal
Thursday, 1.6: Graveside burial @ Highland Cemetery in Winfield, KS followed by a reception and meal

All events will be focused on celbrating her life as she wanted.

There is a bereavement travel service for those needing to fly in from other places. I would recommend waiting until the timelines are solidified, but the funeral home director highly recommended this place as they hold seats on airlines and should be able to offer competitive prices as well as have some availability.

Dignity Memorial Bereavement Travel Program
Phone: 800.224.4177
They will need the following questions answered:
- Name of the Funeral Home: McGilley Memorial Chapels
- Name of the Deceased: Cathi Maynard
- Reference Number: 2520

Lots of love,

Conor, Mark, and Family

Thurs, 12.30 - Transitioning to Heaven

2010-12-30T20:57:00.003-06:00

I really had no other way to title this post. The last day and a half has been surreal as Mom's begun her transition to Heaven.

Yesterday she was less alert than she had been and really only awake for a few hours in the morning. She did ask what day it was at one point. When we told her it was Wednesday, she put her hands up as if to say 'where does the time go?'. She also managed to drink a little tea and have a banana split with butter pecan ice cream and caramel coating. She also confirmed that her birthday was today. Unfortunately now that today's here I'm fairly certain she doesn't know it is.

After Wednesday morning, she began doing more of the things that the book the hospice group gave us said she would - picking at her clothes, mumbling incoherently, spiking a fever, and sleeping with her eyes slightly open. The book walks you through some of the end of life symptoms and is titled 'Gone From My Sight'. It's been helpful to gauge just where we are. One thing she has not done that some of you may have had loved ones do is talk to those who have gone before her. At least she hasn't said names that we can recognize.

Today's been extremely hard on all of us with it being her birthday and Grandpa and Grandma's wedding anniversary. There have been a lot of tears, talking about funeral arrangements, and sitting at her bedside holding her hand and talking to her. While she has only said a few things that are understandable, we're fairly certain she knows who is here and understands some things we say. She's given a couple of hugs and smiles, which make us all smile.

One thing the nurse mentioned yesterday that has been apparent is once a person starts to go, the pace at which they are going does not tend to slow. If anything, it quickens. That was just based on how much she had changed from Monday to Wednesday. When she returned today, I asked what it looked like now as near as most of us could tell it was going to be soon. She estimated today that we're a couple of days away. Her feeling is Mom will fall asleep and maintain that way for a while before leaving us. For me personally, it would be fitting for her to go on New Year's Day as that's when her Grandma Snell passed away (1.1.00). And Mom was extremely close to all of her Grandparents, filling us all with more stories than one could imagine. She's always been sort of a 'link' to the family's past in this regard.

The hardest thing about this time is it really looks like Mom will wake up and start talking to you. That or that she really has something to say. It's both frustrating and hard as we know that she won't.

All this aside, we keep telling her that we'll be ok. She needs to know from all of us that it's ok to go see those who have passed before her in Heaven and hug them, tell her great stories, not wear hearing aids, and look down upon all of us with her watchful eyes. Aunt Lori put it best when she said that we know she'll still be taking care of all of us b/c that's what she's always done. As the oldest of 7, Mom has always been a caretaker - an amazing one.

Given the nature of this post, I want to leave on a funny note. As I've alluded to earlier, Mom's always had an amazing sense of humor regarding her hearing loss. Two days ago the nurse's aides came to give her a shower. Afterwards, Mom was leaving her room with her chin tucked to her chest. The aide said, 'she says her neck hurts.' So I said, 'Mom, does your neck hurt?' In classic Mom voice, she said, 'Nuts? Conor, I don't have nuts. I have ovaries!' Man I'll miss those comments. :)

Tues, 12.28 - Tradeoffs

2010-12-28T20:32:00.003-06:00

Since about 4 PM yesterday, sleep's been the theme. Mom's been awake for about 3 hours this morning to chat with Grandma and Grandpa then Walt stopped by. She was also able to get a nice shower with the nurse's aid early this afternoon (although she was a lot weaker going up and down the stairs than just a few days ago). When she's awake, there's a definite degree of confusion that's there. I thought perhaps it was the Roxanol (liquid morphine) that I gave her yesterday to help out with her breathing and hacking, but seems that wasn't the only thing causing her confusion as it was a long time between doses and she continues to be somewhat confused.

She has been hacking a lot less, which is awesome. I've been giving her more of the drug (Atropene) we got for managing her lung secretions as well. It sure helps us all to not see her coughing like she was. I also just read Abby's comment on the last post and yep - that's what we're doing.

The tradeoffs title is based on the fact that every decision we make has tradeoffs. If we give her platelets, she may not have blood in her cough but it could suffocate her b/c of fluid in her lungs and a lack of activity. If we don't give her morphine, she may be more coherent but may cough and hack more. I talked to Nurse Amy yesterday and she said if she were to be in a Hospice care facility they would have equipment to suck some of the blood and other hacking out, but she's not at home. It's truly a balance. The goal for all of us is to keep her at home and mitigate pain. Thus far we've been succssful and will continue to keep those goals in mind.

Sun, 12.26 - Day after Christmas

2010-12-26T21:33:00.002-06:00

Christmas Eve started with a bang. Mom got up and wanted to go to her parents' house so Mark obliged and schlepped her over there. He wasn't sure why they went, but took her anyway and she took up residence there through this morning.

That did enable her to see a lot of people the past few days although I'm fairly certain she would've seen them anyway b/c everybody wants to get in a visit! There was a family dinner yesterday and Mom stayed in Grandma and Grandpa's bedroom while people shuttled in and out to chat, hug, and take some pictures. There are some good ones of her and her siblings that were there - Janice, Lori, Trish, and Walt. I'd post, but they're still on a camera that I don't have available.

This morning she saw a couple of nieces prior to coming back here. I also gave her the photobook that Anners put together with HB and Ella pics from the year (f you haven't seen one of these off Kodak Gallery or other photo websites, I highly recommend them). There are pics in there from when she held Ella in the initial hours and days after she was born. We also watched the Chiefs win today and get some help to clinch their division. She was quite pleased with their win although no Tomahawk Chop. :)

Tonight she spiked a slight fever so she's taken some Tylenol and we're waiting on the hospice nurse to stop in and check on her. I've got a list of a few things to ask about - sponge toothbrushes (like she had in the hospital) and whether there's potentially a blood clot in her esophagus that is causing some of the hacking / wommitting. Several months back she had this and it was due to a lack of platelets. Given where we are with her treatment where transfusions are risky, I'm not sure what can be done but we're hoping there's a drug that will help dissipate it and provide some relief.

It's safe to say there are fewer clear moments than there were when I last wrote. That being said, she's been awake a lot more the past couple of days than she was. I'm honestly not sure which is best as when she's awake she does cough and that often brings wommitting. It's not that there's any food in there though so it's not what most of you would be used to seeing. And when she's asleep it's very peaceful to watch.

Ok, I think that's it. Just wanted to catch everybody up on how she spent the holiday and is doing now.

Thurs, 12.23 - Pre-Christmas Post

2010-12-23T20:09:00.004-06:00

Today marks one week until Mom's 57th birthday. Please don't tell her I posted her age to everyone. :) It's been a hectic last few days as evidenced by the fact that last night's post was actually drafted on Monday night and I hurriedly posted it just b/c it was losing its relevancy quickly. So let me see if I can recap where we are now as I prepare to head back to Chicago in 12 hours. I'm headed back home for Christmas then returning the morning of the 26th.

As Gail mentioned in her comment to the last post, Tuesday and Wednesday mornings consisted of completing the video of her life. And we're looking for some additional scouting pictures to include in it.

Mornings continue to be when Mom's most alert and able to engage in conversation. Sure, she still dozes off mid-sentence and takes her naps. But compared to the afternoon, especially after 3 - 4 or so, it's ALERT. We also have foregone any visits to the clinic and this morning made the decision to not go back at all. This was after a conversation with Nurse Amy where we learned that the TPN and any transfusions would actually be detrimental to her lungs. The fact is she's not really moving around a lot and there's already fluid in her lungs. So tranfusions and TPN will not have the impact you would think - prolonging the inevitable. Instead we have changed antibiotics to help her body with this fluid and make her more comfortable than the constant gagging and wommitting of flem and fluids.

Yesterday brought a visit from Father Tom Tank to offer the Annointing of the Sick sacrament for Mom. We all participated in the prayers and annointment. It was beautiful. We also discussed funeral arrangements and got a laugh when Mom wanted to make sure Father had all of the plans regarding pallbearers, readings (and readers), etc. that we've been working on the past few months. I had to remind her that he's used to planning a funeral with a lot less warning than he has here. :) It was a light-hearded moment that made us all chuckle - Mom included.

Mark and I have started going through all of the medical bills and statements as well as catching up the company books. There's been a lot of progress, but rest assured it's the bulk of what we'll have to tackle in the coming weeks. It was actually funny yesterday when I brought some documents to Mom for her signature and she wanted to jump in front of the office computer to do it. I had to laugh and reel her in! First I told her that if she wasn't here then we would have to figure it out anyway. 'True' was her response. Then I told her that we do not want her working during these times and instead focusing on things she has energy to do and wants to do. Not for nothing, for most of us that is not work.

This morning that meant working on something Mom decided she wanted to do in addition to the video upon learning of the mortality associated with chloromas. She's documented a list of activities for both of my kids that she's inserting into birthday cards for them. I'm not sure she'll get all of the cards signed and written in as she insists she wants to, but these babies will forever have Grandma Cathi present in their lives thanks to this ongoing present she's left them. Whether it's a cultural trip, family event, or other task she's assigned them for their birthday, it will all be for her. We all look forward to remembering her and ensuring that she lives on for not just the grandkids - but all of us.

We tried to get together and head to the Plaza to see the Christmas lights one more time. She mentioned the other day that was one thing she really wanted to do. Unfortunately by the time it's dark enough for the lights, it's dicey whether she'll be awake and able to go. We're hoping we can get her there sometime in the next few days though. Stay tuned.

In a very nice way, the last few days have been extremely peaceful and calming. For 2.5 years, Mom has had her ups and downs, often times having survival in her grasp only to have it yanked back again. Now we have a plan where we actually know the end. And while I cannot pretend to know what it's like to be in her shoes, she's going through this just like the rest of her life - with beauty and class.

Love to all this holiday season and Merry Christmas to most. My next post is not likely to be until 12.26.

Mon, 12.20 - Palliative Care Begins

2010-12-20T22:54:00.001-06:00

Conor again. I almost feel like it's safe to say at this point any post on the blog will be coming from me. So unless you hear otherwise, assume it's me!

Mark and I arrived in KC yesterday to help plan some of the things we need to do in the coming weeks. First on the docket was seeing Mom and figuring out priorities. The easiest observation was her quick deterioration in her energy and strength in just one week. Walking up the stairs unaided is out of the question. She is sleeping a lot and at times is less than coherent. We do laugh after the fact about some of these comments. You have to.

Fortunately she's been pretty good the last 2 days and it's nothing more than her typical 'hearing challenged' repeats. An example of her mishearing something was yesterday when Janice (who recently had foot surgery) mentioned she has a bruise slowly growing through her foot and outside of her walking boot. Mom couldn't make that out and said, 'You have a spruce tree growing in your foot?' Literally just laughed as I typed that one... Trust me though, for those of you who don't know her - we've been laughing about her interpretation of what we say for 30 years. And she has a great sense of humor about it. After all, she does have very strong hearing aids and it's going to happen. Sure makes it easier when she laughs too.

This drop in energy levels required us to make a decision where she will spend the rest of her earthly time. After much discussion, she will be at her house and we're currently utilizing the services of a palliative care agency. They've been great and within hours had a hospital bed out. So she's set-up in her family room w/ the furniture rearranged to accomodate the rest of us sitting around, watching tv, chatting, etc. Often times she dozes off in the middle of these chats as it really does take a lot of work for her to keep up.

Gail also flew in Monday night to help complete her life video as Mom insists on her producing this after the way it had started. We'll be sure to share portions at the appropriate time.

Lastly, I should point out there are many projections out there on how long Mom will be around. We heard from some of the nurses that it may not be longer than a few weeks based on previous patients they've seen. That would be a little shorter than the doctors, but really - does it matter? We're enjoying time, getting things done, and crying appropriately.

Sat, 12.18

2010-12-18T21:59:00.004-06:00

Conor back for another round...

First, thanks to everyone for the kind thoughts after the last post. I think there are very few people in our family that haven't heard someone who's praying for them and us. It sure means a lot and honestly has the past 2.5 years. I'll be having a beer with someone that I see occasionally and they'll say, 'oh hey, how's your mom doing? I've been reading the blog and she seems like she's doing...' It's amazing how many readers there are that we don't even hear about. Just awesome.

Anyway, so yesterday we got prelminary results from the bone marrow biopsy - final results are expected next week. We knew by doing the biopsy we may not like what we would find, but as a family we wanted to better set our expectations. Even Abhyankar said something similar to that when I talked to him to schedule it. I think his exact words were 'I'm fraid what we'll find.' But he understood our desire to know.

The results are not positive. 17% leukemic cells in mom's marrow. This was probably worse than I even imagined as I was hoping maybe the leukemic cells, if they existed, were less than the 11.2% that's mom's blood. Translation - she has less than the 4 - 6 months we were hoping for. It's probably closer to 6 - 10 weeks. So we're moving forward with lining up some palliative care, hospice, and in-home healthcare resources to help out with keeping her comfortable.

I'm heading to KC on Monday to work through some more things related to her care and business. For her clients, you may be hearing from me over the coming weeks as we figure out where we go from here.

Tues, 12.14 - Family Meeting

2010-12-15T20:53:00.004-06:00

Conor reporting here...

Tuesday was another visit to the clinic after all of us (Mark, Annie, the kids, and me) were in KC for an extended weekend - originally intended to be 4 days and extended to 5 due to some lovely Chicago weather that kept us in KC. We celebrated Christmas Saturday night with some Jackstack BBQ and gifts, and had such a great time.

The clinic vist was a bit of a different story. When we got to KC, Mom had been able to do very little in the way of eating or drinking and was extremely lethargic - difficulty staying awake, having coherent conversations, etc. So we scheduled a family meeting with the doctors and in the meantime she got on TPN and started feeling a lot better. She was able to pick up the kids, laugh, and enjoy the rest of the visit.

When she got to the clinic Tuesday, there was good news. All counts were positive enough that she needed no transfusions. That made two days in a row so we were hoping for the best. Then Dr. Abhyankar started the conference...

Mom's % donor has slipped from 98.4% Walt to 88.2% in a month. And Mom's cells do have the 5q- cells present. He explained this was concerning as it's not just a 10 point slip, it's a 10X slip. Things are moving in the wrong direction, leaving us with 3 options:

1. Increase the Revlimid dosage from 5 mg to 10. This is designed to suppress the 5q- so could slow the graft slippage. Revlimid brings additional GI issues and lower blood counts all the way around. We can do a bone marrow biopsy to determine what's in the actual marrow although Dr. A thinks this will likely tell us the graft is even worse as blood lags the marrow. But it will help us understand how much Revlimid could do. It will also help us understand if the marrow already has leukemic cells or blasts present.
2. Utilize a booster from Walt's cells. This is extremely risky due to the fact she already has GVHD and could present very adverse results in quick fashion.
3. Do nothing and maintain as we are.

Obviously none of these options are good. 2 brings a lot of risk, 1 would extend things with a quality of life sacrifice in the short-term, and 3 isn't great either. We are proceeding with 1 this week with marrow results forthcoming. Mom will need to continue to take TPN for her nutrition and carry the backpack around. Eventually 3 will be the choice. We're just not sure when.

Where does this truly leave us? Truth is, this is what we know. Dr. A said it's likely there are 2 - 4 months left with no more than 6. We will likely have a better idea after the biopsy results are back although nobody expects a true estimation as that wouldn't be recommended medical practice. Once the graft does slip completely, Mom should have window of time where she feels much better than she does right now. We will seize that window and enjoy it plus whatever time we have left.

I also want to point out that these doctors are having as hard of a time with this as we are. Amy mentioned she saw Dr. A get choked up talking about Mom, something she's never seen in 6 years of working with him. It's safe to say McGuirk, Ganguly, and Aljitawi all feel the same. And the nurses...wow, they are so close to Mom that I shudder to think what they are feeling. The reason I want to point all this out is b/c even while fighting this horrible disease, Mom has continued to make a huge impact on everyone she touches. We are so blessed to have her as our Mom / Grandma Cathi / Mother-in-law / Daughter / Sister / Aunt / Friend.

In conclusion, I want everybody to know that we are doing everything we can to ensure the greatest % of the time remaining is QUALITY. Even though the news is not shocking, it doesn't make it any easier to absorb. We're all still reeling a bit prior to getting our heads around these end of life activities that we all want to ensure are completed. And we will hang onto the positives over the coming months - laughing, crying, and loving.

Thanksgiving commotion

2010-11-29T09:58:00.002-06:00

Here I am, too long about posting again. I guess I just overlooked it in the commotion of Thanksgiving. Thanksgiving was fun, even though there were just 3 of us, Mom and Dad and me. I stayed at their house the night before and went to work cooking fairly in the morning. I made the stuffing. parsnip/carrot/leek gratin and a new recipe, brussels sprouts succotash. Mari and I also made a superb apple pie the day before which didn't have any takers at Mom's house as she had made 2 pumpkin pies that were delicious. Of course we had turkey and mashed potatoes and gravy. A nice satisfying meal. and I so enjoyed cooking.

Being neutropenic and all, I don't think that technically I'm supposed to cook like that but it was nice to not worry for a day. I can't eat out. I'm not supposed to eat food not cooked in my kitchen (but I fudge this one occasionally.) And I can't go to the store. Not for groceries, not for Christmas presents. I've been leaning on people to go pick up things for me. I find them in the ads or on line then send someone to buy them.

Meanwhile I've had Janice and Mari and Walt and Peggy staying with me. Looks like I will stay at Mom's most of this coming week. I still have days of being sore and wobbly, the occasional womit, and low blood sugar from time to time. This is why I need someone with me--Mostly the blood sugar. It goes with the prednizone. Likewise the Caspo goes with prednizone.

My counts have gone down, but today was better news. The white count was 1.3. It was down under 1, so this is good. Platelets and red blood cells were in the "don't transfuse" range, which is way below normal. So this is good. I think the Revlimid is working. Because of this and because my joints hurt. My clinic visits have bumped up to 3 per week for now. We'll see how this goes.
~Cathi

Slight change on the course

2010-11-20T10:33:00.003-06:00

Visited the clinic yesterday and saw Dr. Aljitawi. We were just talking over one another--it was a scramble. I gained 2#, all by eating. No TPN. I only needed 4 units of potassium (compared to 7 on Tuesday.) Thanks to everyone who sent notes about potassium rich foods. Bananas don't even fall at the top of the list! Baked potatoes do, offering 1031 mg of potassium.

My counts were down. I got blood and platelets and potassium and magnesium. My ANC is .5; my white count was 1.7. ANC is the part of the white cell that actually fights germs. It needs to be over 1 for me to be able to fully participate in food.

I brought up Revlimid and he said "no, we're not ready." But we do think that the 1.4% of your blood that is you is 5q- and that is why your counts are not recovering. We argued a bit and I trumped with "my counts are already in the tank so why not go ahead with the Revlimid before things get any worse." Ok, he says, you've convinced me. Take the Revlimid. Take one less Prednizone--that could be keeping them down too.

He was very happy with the weight gain and kept saying "That is you. you have done that. I am very proud of you." So I just need to follow instructions and continue.

Robbie, your comment a couple of blogs ago about my spirit and my friends is the kind of thing I can wrap up and keep in my pocket for weeks. No matter what the docs say, what my friends say is most important. Barry's simple "proceed" was fun. I am what I am and I love it. Because it brings all these wonderful people into my life. I was thinking a while back about how sometime in the first couple of weeks I asked to have someone spend the nights with me at the hospital and they just did! What an enormous thing to ask for and have people just do it. My kids, my sibs, even my parents took shift or two. How lucky am I?

Other minor things going on include shaving my legs, nurturing the hair growth on my head. Choosing my food carefully. Last night I womited, I think a piece of asparagus triggered the gag reflex right during the meal. I actually came back to the table and ate a biscuit and enjoyed a cobbler for dessert. So it wasn't really nausea, just weakened muscles.

I've been picking at Christmas shopping by pointing at something in the Sunday paper ads and dispatching someone to pick it up. Janice was shopping for new dishes and I insisted she get something she really loves. She's taking my leftover silverware but it's no prize. Sharlyne insisted I get that. She said "I can't believe you have all these plates and bowls and not enough flatware to set a table." If you have ever been scolded by Sharlyne, she has a way of making you feel like a really smart person except for this one stupid thing. So you want to fix the one stupid thing ASAP! which I did.

Today is HB's birthday party and I am web cammed in so I'm going to be on line a bunch I reckon. The kids' house looks ever so festive.
~Cathi

more Dang

2010-11-17T13:54:00.002-06:00

I went to the clinic yesterday and the counts, except for hemoglobin were all down. I am really neutropenic now. No salad or fresh fruit or leftovers. Not that I'm big on salad or fresh fruit right now with the wobbly stomach, but there are some very fine leftovers in that fridge.

And a new twist, not major, from living without the TPN. The TPN had a lot of vitamins in it and now I'm low on Potassium and Magnesium. I have to take Potassium through the IV because it irritates the stomach. Same for Magnesium. They told me I could take Slo-Mag but be careful because it irritates the stomach sometimes. No thank you. Keeping the stomach calm is number one.

Potassium takes a loooooong time to drip. So 4 hours at the clinic yesterday getting platelets and Potassium, then I brought a backpack home with a few more units. Fortunately potassium does not usually go all night so I can go to sleep unhooked. But this is what it will be till we sort something out. Like my stomach gets well enough to take the pills, or I figure out how many bananas it takes to maintain a healthy potassium level. This is more than appropriate since the prednizone creates a very hairy face and while I don't look like a chimp at all, I feel like one sometimes. And I'm not very crazy about bananas.

Janice is with me this week and she is just full of interesting trivia. She is a schoolteacher on a break so is seeing doctors and getting lab work and picking up scrips. Her husband is on a long term assignment in Connecticut right now.

One time when I was in the hospital and my potassium was low, it seemed like no matter how many units the pharmacist ordered it was never enough. One evening during shift change I overheard the night nurse in the hall. "Give her to me tonight and I'll just drip Potassium all night long and we'll see if that gets it up in the normal range." She had a good idea and it worked.

So limited guests right now, no restaurant food, no fresh, uncooked food. Serious attention to sanitizing. But the blog and the Christmas shopping goes on.
~Cathi

Three YIPPEES and a Dang!

2010-11-12T20:19:00.005-06:00

Today is a day to celebrate.

I went to the clinic and I saw Dr Aljitawi. I had my little food journal all prepared and the calories for the last 11 days all tallied up. So he ordered away the TPN. YIPPEE! TPN is the nutrition bag that I carry around in a 10# or more backpack most of the time. From about 7pm til noon the next day. It carried me when I couldn't eat, or couldn't keep anything down. Dr Al thinks my appetite will increase now. Which will be nice. TPN was also hard on my liver so we're glad to get that stopped.

So that's one yippee.

Then he reduced the prednisone by 25% which is a lot. Hopefully I will notice this difference in the ability to build strength and stamina. He also asked about constriction in my body and I have quite a lot of constriction in my hands, which has got worse and now a bit better. So I should not vomit either.

That's two yippees.

And the final yippee was unexpected--the chimerism results show my blood is 98.6% Walt!! We expect this to continue up to 100%. Voila! another successful remission.

Three yippees.

Then one dang!
I got platelets today; blood and platelets Tuesday. I'm still on the Tues/Fri schedule and see a doctor every 2 weeks, a nurse practitioner the week in between. Tuesday the counts had dropped enough to make me neutropenic again. Dang! So that cancelled a few plans including a Rosary for a scout friend's wife. It wasn't high enough to eat out yet today so we had a fine celebration dinner right here at the house. (with just a little bit of wine. ;)

I've had a steady stream of company and companions which has been pleasant. Mom and Dad have been filling in the blanks here and there. Meanwhile I am getting birthday presents ready for Harrison who will turn 2 on the 24th. I've decided not to try going up there for the party or Thanksgiving since I'm just not sure what life will be like til I've tried this method for a few days. I still have to get Caspofungin via IV every day. It comes in a baby bottle like container that we just attach to my arm. There is a balloon inside the bottle filled with the Caspo. And the balloon, being rubberish, creates enough pressure to push the Caspo out of the bottle and into my arm. Very clever these Chinese.

Janice is coming up to stay a week next week. Mari is coming the week after that. Mom & Dad and I are having Thanksgiving together. Perhaps with another friend. I will cook a turkey breast and some favorite recipes and perhaps spring a fine new dessert on them. I've watched a lot of FoodTV since I got sick this time.

And that's the news! Sort of Dang, yippee, yippee, yippee. Not quite Chitty Chitty Bang Bang but we're getting there.
~Cathi

Pep talk at the clinic

2010-11-05T15:53:00.002-05:00

I've had a completely unexpected day, starting with getting home from the clinic at 11 am! I didn't need platelets or anything else. They cancelled the biopsy and did a "peripheral blood chimerism" meaning they drew the blood from my arm and will determine how much is Walt and how much is me from that.

McGuirk stepped in after I was already on the procedure table for the biopsy and cancelled it. Then came by to see me and gave me a nice pep talk. He started with a lot of questions about how I feel and eating and all that. And he said "you're in this spot because of your spirit. You have a wonderful spirit." (This practically rendered me speechless.)

We talked about grandkids and my nephew Mason earning his Eagle and calling me and he said "these are the things that make me feel I am doing God's work. These are the important things in life--buying costumes for your grandkids and answering the phone call from your nephew. Thanks for trusting us to take care of you. He also asked when I was going to visit Chicago. That will be a while, but I know it's going to happen.

It was a humbling encounter. He is still amazed that the chloromas melted away. I don't think about it too much; I just keep on truckin' That's my approach and I'm sticking with it. Just proceed.

Mom got sick this week so she is at home recovering (minor gut issue) so I've scrambled around to fill in the blanks. Peggy stayed last night and we watched our recorded "Biggest Loser" from Tuesday. My out of town friends, Mark & Deb Paton are in town today and will stay tonight. Then they head to Manhattan for the showdown against Texas tomorrow night. Mark cooks a fabulous breakfast and nearly always cooks it when we are together, so he's cooking in the morning. And we are going out to eat tonight. Which is why I'm blogging instead of napping.

Let's see Sharlyne is coming in the morning and staying into next week. Lori and I worked on Ella's quilt and put together each of the blocks. I need to lay them out and then we will sew them together with all the borders and stuff. We are both seasoned quilters and the work went very smoothly with me cutting and directing and Lori stitching and ironing.

I've had some time alone so I've worked in my kitchen and tidied it the way I like it. Same with the bedroom. Having my house look moderately organized is soothing to me.

I guess the final news for today is that Dr. McGuirk reduced my appointments from 3 a week to 2 a week. So I don't go back til Tuesday. I think this means I'm going to be taking the full dose of TPN for an extra week or so but we'll see. I must get the food journal updated to doctor style speed reading and perhaps one of them will make the call on Tuesday.

I wish I weren't still taking some of these "help me not vomit" drugs because most of them are anti-anxiety and I can't drive. But I'm sure feeling better and better.
~Cathi

The Very Latest!

2010-11-03T19:46:00.005-05:00

and really, not much has changed. The clinic today only took 3 hours and Lori is now my babysitter. She is a quilter so tomorrow we will tag team the Ella quilt and hopefully get that pieced. I got platelets again today.

I am still happily eating along, though I did lose the Mexican food from Monday night. I knew that was a risk but I dared. I'm definitely still relying on the steroids for womit control. However the blood sugar has settled down quite a bit. We started measuring it more often so we could see what it's doing. Of course I have been eating regular for a couple of weeks now so it might be adjusting to the new intake.

My appetite is coming back and I'm actually beginning to wish for certain things to eat. Dinner things. Non-sweet things. Totally unlike the last few weeks. Soon I will be gaining weight and I'll have to lay down on the bed to zip my jeans.

I got a pedicure monday--did I mention that? A wonderful invention, pedicures. When I was young, very young, I sat on the floor at my Granny's feet and gave her pedicures. Of course I had no knowledge of the name of what I was doing but that was it. Soaked her feet, trimmed her ingrown toenails, tidied up and polished. I can't reach my feet properly to work on my toes so I think a storefront you can walk into and get this service for a little bit of cash is just wonderful. (I have made progress on reaching my feet because I can put my socks on by myself.)

And that's probably enough prattle. I'm still scheduled for a bone marrow biopsy on Friday. I'm still scheduled to see a doctor on Monday. I won't have results of the biopsy for a few days. We are most interested in the chimerism--the degree of donor and host cells in there.

Finally these are the grandkids' Halloween costumes in here. Ella was a strawberry and Harrison was DJ Lance Rock (look him up.) He was very cute because he totally gets the dress up and act like someone else gig. His 2nd birthday is in just a couple of weeks!

~Cathi

Blood Sugar Seesaw

2010-11-01T20:02:00.002-05:00

After several weeks of blood sugar readings consistently around 100 they have suddenly started bouncing all over. Highs, and lows. Neither one of which is real comfortable for me. I reckon this must be because I've started eating enough to matter. So I'm now recording just about everything. Everything I eat, everything I drink, every blood sugar reading, all with times and other info. Today they did cut back the prednizone another 10 mg so hopefully that will help, at least with the high bs readings.

Friday I have a bone marrow biopsy to see where we are on this continuum. Today my WBC and my Hg were both "up" and healthy, but I still needed platelets. The platelets are just not being produced by the bone marrow. A dropping platelet count was the first sign of relapse before the whole boob leukemia thing. I'll just have to see what the biopsy shows.

Meanwhile Mom is staying this week and my big goal is to get Ella's quilt assembled but the days get pretty crowded with clinic visits and social calls. The courier for blood products at the clinic changed and sometimes I have to wait 4 hours for platelets to be delivered, before they even pour them into me. It's very frustrating. The blood sugar swings affect my momentum.

Gail asked why the vomiting stopped and I'm not sure but here's what we threw at it ultimately. Prednizone (steroids) which would reduce inflammation, and control GVHD; Marinol....more commonly known in its native format of weed; klonipin, another anti-anxiety drug used to control nausea. Meanwhile I worked very hard to avoid hitting that gag reflex, like don't even bend over the sink to brush my teeth.

Tonight is actually the first time I've even felt close to womiting for about 2 weeks. And tonight I went to Tequila Harry's for taco night with M&D and two nephews, Eric and Carson. Carson and his twin brother Blake turned 18 Saturday (Trish's kids.) Blake had to work unexpectedly so missed our dinner. Anyway I ate half a taco; half a very big taco.

I have spent a few afternoons on my own and I confess to enjoying them very much. But the blood sugar seesaw is going to ensure I don't sleep alone for a while. The TPN (nourishment) is also a factor. It is a real production to get set up, hooked up and going. It seems to stop arbitrarily sometimes, different people get different results getting it going. It's just a nuisance.

However today the clinic told me to keep a food diary and if I'm consuming a consistent 800 calories a day they will look at reducing the TPN. And then doing away with it. That should also help with the blood sugar. So it's just going to be a while before I am anything more than a patient. Sigh.

~Cathi

2010-10-29T10:25:00.002-05:00

To illustrate how much improved I'm feeling I will just tell you that I ate a McDonald's happy meal for lunch yesterday. The fries didn't taste so great but the burger was fine. And no womiting. I ate at McDonald's because Mari and I were on a major shopping trip and simply didn't have time to stop. We hit JoAnn fabrics, Marbeck's, and Aldi's. All in one trip. I came home and took a nap but I take naps most days.

Tuesday I got a call from the clinic that my CMV came back positive. That would be why Mon and Tues were not so great days. Changed my meds again but at least I can swallow pills again these days. So I take this big honkin expensive pill for a week and check again. Then I think I'm off a week and back on a week. I have felt good since Tues.

I'm pretty weak and not really getting stronger, thanks to the prednizone. They cut it back 10 mg on wed so now I'm taking 5 pills a day instead of 6. Of course I have to split them between morning and evening so that means I'm still taking 6 pills because 1 is cut in half. The new antiviral is 2 big pills to replace 2 big halves of 1 very big pill; and of course they added a nice size capsule to the mix--all twice a day. So it will be a while before I'm driving. Tractors anyway.

My niece's wedding was lovely and she was beautiful. It was fun to see all the family. I was pretty tired after just the wedding though so we headed home instead of to the reception. Mark and his buddy came to the wedding which was a nice benefit--Nice to get his big bear hugs. When we arrived at the church for the wedding I checked my blood sugar and it was 48! yikes! so I sat in the car and drank juice while the kids rustled up some chicken nuggets for me to eat. It took a while to get the blood sugar count up to normal but I scrambled in to the church at the last minute.

Well it's another long day at the clinic. We've been here 2 hours and just got lab results. I could still be here at 5 the way this is going. One fellow just sat down outside my door and got his labs in half an hour or less. I seem to get the short end of the lab stick every time this week. sigh.

~Cathi

Another focus shift

2010-10-23T08:23:00.003-05:00

I am still at home. I feel surprisingly good. I have only womited twice this week. My blood sugar is pretty stable so incidents of lightheadedness are infrequent. The clinic actually suggested staying by myself in the afternoons.

A few weeks ago I did not expect this. I did not expect to be shopping for November birthdays or Christmas presents. My white count and my red count are holding up pretty good; no neupogen or blood transfusions for a couple of weeks. Just the platelets need supplementing.

I ask the providers what's going on, what's likely to happen and the universal answer is "we don't know." So I could continue improving and enjoying life for months, a very indefinite number.

I have to change my thinking. Shorten the horizon. Do what's possible today. And be very very grateful for the opportunity and for my caregivers who make it possible. I have approached this illness from the start with a lot of energy, with specific recovery goals. Now then I am coasting. My family and friends who are such diligent, loving caregivers are putting in the energy. The folks at the clinic and the hospital are no longer surprised by the number of people involved but they are amazed. Few patients are so lucky. I think this is the reason I'm still here and feeling good.

So feeling good means that yesterday Mari and I went to a quilt shop and bought fabric for Ella's quilt. Today we are driving down to Ft Scott for my niece's wedding. We cut an article from the paper about driving routes with good fall color. Obviously I hope to sew the quilt. So short term plans but not staying home.

The visit with the kids was awesome. I could not lift HB or Ella but once someone put them in my arms we were good. Harrison went across the street to play with Jake and Clare each evening which tickled them all. Conor and Annie took very good care of me and the house without complaining. It really added a lot to their workload but they just got after it. Annie's Mom, Cheryl, drove up from Liberal with baby things so we were well equipped.

Between Walt and Margaret/Craig, little things around the house are getting done. Mari makes the house shine every day. Last night she tried a new recipe which was fun and tasty. Margaret is now expecting a baby in May...we're all very excited.

Meanwhile I am at home. I visit the clinic every other day. I'm semi busy and semi content.
~Cathi

Home in the zone

2010-10-17T19:38:00.002-05:00

Sunday night and I am home. I got out of the hospital Thursday late afternoon and have been enjoying being here. I have the TPN to carry around most of the time, and baby bottles of Caspofungin, the current anti-fungal I'm taking.

The rest of the pills are a crapshoot. I try to spread them out so I don't take too many at once but my stomach still revolts against the pills. The womiting continues but there is no blood.

I'm trying to eat so I can gain some weight and most things stay down. But it's not enough to stop the weight loss.

Conor and Annie arrived today with Harrison & Ella and I am totally charmed by both of them. Harrison is having the most fun with my Halloween candy bowl that has a green hand in it that reaches and talks when you reach in the bowl. But we have plenty of toys for him. Zack & Jenn loaned us some, and Annie's mom drove in from Liberal with all sorts of baby gear to make life easier.

My counts are holding pretty steady except for platelets. I went in for one unit today and I go back Tues mid day to be checked out. I must check my blood sugar 3x a day and take insulin if called for. Though yesterday I had a spell of low blood sugar that we like to never got to sort itself out. Juice and peanut butter and finally hard candy.

So I'm going to meander over to the pill cabinet and see what I think I can safely take this evening that will stay down. The puzzle is made more interesting because the prednizone interferes with my sleep. Did I mention that? Prednizone is now part of the regime.
~Cathi

blog update

2010-10-13T14:39:00.002-05:00

Wed. 10/6. Discharge from hospital. Vomit 1st thing I try to eat. It's late, I went to bed.

Thu. 10/7. Margaret and Craig arrive. They are so kind and loving and hard working. Eat just a little. Vomit.

Fri. 10/8. Craig takes me to the clinic and I see Dr. Aljitawi. All kinds of ideas which have been tried. Get some platelets.

Sat. 10/9. Eat a big breakfast that Craig cooked. Coffee cake and baked eggs. Then have a big supper that brother-in-law Mark cooked--bit of steak, carrots, baked potato. Followed by healthy serving of Mom's cherry cobbler. yum

Sun. 10/10. Mom takes over from Margaret & Craig who head back to Kentucky. She is on a mission to get food and drink into me. My throat is blocked somehow and I can only drink a couple of small sips without choking/vomiting. Same for food. Vomit often, with lots of blood. While taking ambien to just get rid of this day, begin vomiting violently with lots of blood and clots and 1 very large clot that obviously had been blocking my esophagus. I'm happy to be able to take a large gulp of water, not happy about going to hospital.

Sun 10/10. 9:30 pm. Get admitted to hospital. Room 4112. a nice big room.

Mon. 10/11. Much commotion because I've been given 2 units of blood with no corresponding rise in Hg count. "You are still bleeding internally somewhere." Rock and roll the GI docs and an endoscopy, meanwhile drawing blood about hourly to check levels. Scope finds a protrusion in esophagus which is not currently bleeding so took pictures and backed out. Vomited at end of procedure while still all trussed up, very messy. Doc said that was good, "all green bile no blood." (Have they forgotten the original problem is vomiting?)

Mon. 10/11. 7pm CT scan with contrast to check for fistula relative to protrusion located above. Extremely weird sensations go with that contrast. Overnight goal is to get platelets over 50 for another scope on Tues to fix it.

Tues. 10/12. No food or drink after midnight til everything was ready for the repair mission. Platelets 57, woot woot. Scope finds protrusion was another blood clot, easily removed. Completed scope but did not take biopsies (don't know a good thing when they see it.) However two recent scopes with biopsies showed no GVH.

Tues. 10/12. 5pm. Ate a bowl of cream of wheat and a pancake both of which tasted great. Watched Wheel of Fortune and The Biggest Loser. Got in bed and vomited. No blood.

Wed. 10/13. Vomited. Ate Blue Koi noodles for lunch. BMT doctor wants GI docs to step up and help diagnose the vomiting. Waiting on sonogram of liver. Expect to vomit again before then. However food tastes better, and the food appears to be digesting and leaving the stomach.

sorry updates are so long in coming. I feel pretty good right now, just frustrated and tired.
~Cathi

Muscling through

2010-10-07T19:51:00.003-05:00

I came home yesterday. It's very nice being here. Sleeping in my own bed and moving around without a pole even though I have a heavy backpack of nutrition to haul around.

However I have not been keeping my food down. I am bound and determined to muscle this out and figure out how to eat and keep it down. Today my stomach has actually made hungry noises and I have obliged it by eating and since breakfast that's been successful.

Yesterday after the neupogen shot my wbc was 3.2 and my anc was 4.760 or some ridiculously high number. This means I can eat anything I want if my stomach was cooperating. I go to the clinic at 8 tomorrow morning. We're going to try an every other day schedule. That should be enough to keep my platelets and hemoglobin in the functioning range.

I confess I don't feel very good. This may be the normal pains of taking neupogen or it may be something else. I don't have the energy that I had even earlier this week.

My niece, Margaret, and her husband Craig are my caretakers this weekend then after a day with Lori, Trish will come for a few days. I think that gets me to the weekend that Conor and Annie are coming with the kids.

2010-10-05T13:52:00.003-05:00

Hi everyone,
Robbie here, posting for Cathi. I'm heading back to Vermont later today but have enjoyed hanging with Cathi in 4102 in the ol' KUMC BMT. She's doing pretty well and is anticipating going home tomorrow or Thursday. Dr. Abhyankar ordered another neupogen booster shot for today to kick those white blood cells into gear, the first one since Thursday. Cathi's making progress with eating and has two meals down today so far. She's still using Ativan (an anti-throwing-up drug) to keep things settled but no womiting so far today. We're heading out soon to walk a few laps around the unit.
I'm getting this hospital figured out, and my routines here. Because it takes several minutes to enter the unit (push wall button to open first set of double doors, wash hands thoroughly for 15 seconds, dry hands, sign in, pick up the phone to request second doors opening, wait for doors to open, enter unit) I try to group things together. I go down the stairs, get the newspaper, peruse the options in the cafeteria and plan lunch; see if there's anything new in the gift shop; climb the stairs back up to the 4th floor, stop by the Resource Room to see if there's anything new and to heat up a cup of water for tea; then go through the process of entering the unit again.
The unit is very well staffed - plenty of nurses and aides. When Cathi pushes the button asking for help, response time is excellent. Of course, she knows them all and they all know her. The nurses in particular are caring and seem to be on top of her needs. It's a small unit - only 12 rooms. Transplant patients are usually admitted for a four-week stay so they often bring their own TVs, DVD players and other things from home to make their stay easier. When we were walking laps yesterday we saw a darkened room lit with several candles (or those battery tea light things that look like candles - I can't imagine that real candles would be allowed). Of course, Cathi has her purple-jacketed dancing Elvis clock on the wall of her room, thanks to Mark who brought it from her home. Each to her own!

Grallace & Womit

2010-10-01T16:10:00.002-05:00

Gail updating the blog this afternoon.

Cathi has steadily improved since earlier this week. 2 days of no womiting, followed by 2 days of womiting. Very little vomiting, but vomiting, nonetheless.

Meds have been changed. Cathi is getting only overnight nutrition (TPN) and some other antibiotics via IV. After those finish, the IV pole is pushed aside. More meds are showing up in pill form, including Ativan for nausea. Dr. Abyankhar has also provided a base rate of Klonopin to battle the nausea. It seems to be working well since over the last 36 hours Cathi has only had to womit twice and only upon waking in the morning.

Her counts continue to rise slowly. She had received Neupogen shots to boost the neutrophil production in the bone marrow and the latest test puts her over the neutropenic threshold, meaning she can eat anything she wants to! (the irony is obvious in that statement...)

The neupogen shots have stopped for a couple of days to see if things will maintain on their own. If the numbers begin to decrease, then more neupogen to urge those buggers back into production.

Her white blood cells, hemoglobin, and platelets are slowly improving. Dr. Abyankhar seems to think that those counts will jump aboard the healthy train any moment. Every day that they inch up is another indicator that the bone marrow is working.

Cards keep showing up in the mail and Cathi is DELIGHTED to open and read each lovely written note. Friends from around town have popped in for a few short minutes to say hello and catch up very briefly. It is good for Cathi to see people and know that she is not forgotten in our busy lives.

I (Gail) spent all day Thursday taping Cathi's stories about her growing up years. I ran out of time Friday to finish the project, but Cathi's friend, Robbie, who will be here over the weekend, will take up where we left off. The stories are poignant and funny at the same time. I've learned things about Cathi I never knew - such a treat to get to know Cathi through the telling of her memories. If you've ever listened to NPR's Story Corps programs, you will understand the format of this project. I have a lot of editing to do, but will be able to help Cathi cross a few things off her list very soon. It will help relieve some of her feelings of too many things to do in too little time.

Cathi's days seem to blend one into another. Having emails, cards & blog posts is such a treat every day. Keep 'em coming & keep up the NO WOMITING karma!!

Womit, or not

2010-09-27T13:04:00.004-05:00

Friday night was the Light-The-Night walk to raise funds for the Leukemia and Lymphoma Society. I and my family missed out entirely but Team Lucky Hikers did have some walkers. I'm posting the picture here. (Chris, Jordan, Sarah and John.) It makes me laugh and makes me cry. I was so disappointed when the nurses walked out of here Friday with their red shirts. But our team did great on the fund raising. Thanks to all who donated. And thanks to Sally for pulling my weight after I got sick right when things began to heat up for the race.

Sunday HB and Ella were baptized and all went well despite my absence. Conor posted a video which is amusing. Harrison was not at all sure about that water.

Life goes on whether I am upbeat or depressed.

I can report that my outlook has calmed even though I often have moments of glum. Sometimes I start thinking that perhaps I can get well. Those moments come, of course, when I feel good which happens more and more. As long as I don't eat.

More changes in the drug routine. As of today's change I'm back on clear liquids, which frankly, is more than I've eaten in a week or more. The doctors are not unified on this situation at all. Dr. Abhyankar is the hospital doc right now and he wobbles about the things Dr. Ganguly thinks are the right thing to do. As in all such situations, mom has made a list, asked her questions and come up with a plan. Everyone is good with this plan so we're off and hopeful.

A fellowship doctor came in one day last week wanting to do something or other procedure and he said to me "did you womit this morning Mssss Maynard?" I squinted and asked him to repeat himself which he did exactly. My sister was here and she started laughing. "Vomit, he said. He wants to know if you vomited!" I told him yes but I was NOT having his procedure and ran him off. But "womit" has become a new amusement around here. If you were commenting on the blog and you got that as a confirmation word, would you ever think "the way a turkish doctor pronounces vomit?"

~Cathi

Reality is

2010-09-23T12:13:00.003-05:00

We had a family meeting this morning with Dr. Ganguly, me, Mari, Mom & Dad & Walt in the room and both Mark and Conor on the speaker phones. Dr. Ganguly was laying out options for the next few weeks. At the end of the session I was pretty depressed. Essentially no respite living or dying. Lots of "we don't know what will happen." Lots of "WHENS" and "IFS"

It made me pretty crazy and very very glum. I'm missing the babies' baptisms in chicago. I can't really eat and I'm sick of vomiting. I wish I had never agreed to this last bit of chemo.

So the upshot is I'm going to be around and I may be miserable for much of that time.
Just a little dose of the real world of cancer and chemo.

Thank you for the prayers and thoughts and cards. I love the idea of knowing people are out there on my side.
~Cathi

Travel Detour

2010-09-22T12:56:00.003-05:00

After a hard day of keeping food and pills down Cathi has landed back in a room at KU Medical center. Her sister Mari took her in early this morning and she was admitted into room 4102 in the BMT section. So we are back the social hours with the nurses and limited guests in the BMT section.

This week had progressed well with Cathi getting back home last Saturday and slow improvements in the WBC's. Her count reached .9 this week, and the absolute neutrophil has reached .6. The magic number on the neutrophil is 1 and then a whole new diet opens. Except that food rarely stays down which is a downer.

Her spirits are not where they should be as the plan was to board a plane and travel to Chicago for the baptism of Ella and Harrison. With the exception of the vomiting the she was progressing towards being able to go. Tuesday she had to concede and pass on the trip to Chicago. So now it is just another weekend with her brother and Mom, and not the fun and excitement of grand kids and the big city.

Her resolve and target remains the same; to get past the vomiting and keep the dinners down.

Courage to Travel

2010-09-20T08:38:00.002-05:00

I arrived at home Saturday afternoon and immediately was buried in the commotion of home. Where does this go? Do you have any...? Can x come over? But the priority was home health care bringing me TPN, otherwise known as IV nutrition. It's a little more complicated than the other IV hookups we've had at home. And requires 16 hours to drip into my body. The backpack with the food, pump and power pack is large and heavy. We hook it up in the evening and it runs until mid-morning the next day.

I wish I could say that soon I won't need it but the barfing is just about as frequent and just as unpredictable as ever. This morning I felt good and ate a "real fruit frozen bar," but lost it on the way to the clinic. (We never travel without a barf bin.) No nausea, just upchuck. It's frustrating.

I get tired easily and only occasionally have a nice burst of energy to get something done. However, Mari called in her friend Cheryl, who has worked a miracle in my house. Cleaning and organizing til I hardly recognize the place. All the junk is out of the front room--even the Nordic Track brought in for cousin Gail. My friends, Mark and Deb Paton from Arkansas City came and cleaned up the weeds around the deck (remove the mulberry tree from the viburnum.)

The stack of pills is overwhelming, even parsed out in 4 batches. And it is sickening to see one of the $100 plus pills hit the bucket when I vomit. I have to say, vomiting is the worst side effect. The worst. I just get tired of it. I'm nervous about eating.

On the up side, the counts are continuing to recover. WBC was .9 yesterday with ANC .467. Perhaps I will be able to go to Chicago for the baptisms of Ella and HB this Sunday. I will have to get willing to haul all this stuff with me and either not eat or be willing to lose it.

Dr. Ganguly nearly drove me crazy in the hospital playing games with when shall I go home? He kept saying "You tell me when you want to go home and I will make it happen." I kept saying "I'm still puking everything I eat. Do you want me out of here?" "Oh no, no. You're in charge." he says. Nevertheless this conversation plays out day after day. Finally I said "Ok I'm ready to go home Friday." His reply was "oh no you're not. You told me you wanted to feel good and then go home. Do you feel good?" uhhhhh NO! What a jumble he made of my head.

Dr. Abhyankar has just stopped in and suggested an additional dose of Reglan. That is a drug that purports to keep food moving through the digestive system. I take it on a strict schedule each 24 hours. So one of those doses will be doubled. I don't have much hope for respite from the vomiting but maybe I'll be surprised.

My WBC is .9, and the ANC is .7xx something. Both good enough to go to Chicago if I am courageous enough to go.
~Cathi

But where to now - Home?

2010-09-15T22:22:00.003-05:00

Cathi is in the hospital keeping a vigilant eye open for signs of improvement. They are there but do not come quickly or easily. This week has seen slow but steady improvement. The Sunday afternoon biopsy results came back empty or negative. Empty is good. That means no blast cells, which are leukemic, but also no bone marrow cells. This is what the two treatments of chemo are supposed to do, kill the Chloromas. Chloromas as you recall are concentrations of leukemic cells, and at the same time the type of chemo also kills the bone marrow. So it is a wait and see game. Wait until Walt's cells grow back into Cathi's marrow. To help with this she is starting shots of neupogen. The neupogen shots cause the bones to ache and the joints to have a little pain. Damn youngest kids they do great, but are always late bloomers.

Today her WBC rose to .3, which is higher than it has been all week but only cause for guarded optimism. The WBC will go up and down and take a while to recover, but we are past what the Dr's think is normal recovery. But much of what we have been through has not been normal, so we are buckled down and waiting for increases in WBC counts. Continued increase is a really really good thing.

The throwing up has lessened and little bits of food are staying down. Her esophagus is also healing and she is on less IV medications as the nurses switch the medications back over to pill form. Tonight she was able to celebrate Jodee's birthday with a chocolate cupcake. A cupcake that knew its place and stayed there. Jodee is a nurse on the floor and part of Cathi's fan club. Little happy dance....

Going home is the big news today. Dr Ganguly came in and said she can go home at any time she chooses. So she has decided that she is going home on Friday, and will tell Dr. Ganguly on Thursday morning. So again is back to the wipes and sanitizing at Cathi's house to get it ready for her.

Janet and Cathi had a wonderful visit this past weekend and there was much sorrow as they hugged and said good bye on Tuesday. Janet is a long time friend of Cathi's from England. Sad to see her leave, but we will look for her wisdoms on the Blog comments. Mari has taken over watch with Cathi and will be here until next Wednesday.

Sunday

2010-09-12T19:11:00.002-05:00

No Chiefs game today. We're saving all that energy for the stadium tomorrow night. But k-State won again yesterday. Good things.

I don't seem to be able to get by a day without plenty of commotion and today it was puking, company, and a bone marrow biopsy. Dr. McGuirk was less certain of his glimmer of hope this morning. The white count is bouncing along the bottom .1 to .2 to .1 to .1 to .2. I am still getting platelets almost every day and blood several times a week. We need these counts to go up and stay up. The white count should lock in and go from .2 to .4 to .7 to 1.2, etc. So the bone marrow biopsy is to discover what's going on in there and whether we will try neupogen shots which typically stimulate production of white cells.

There are squishy (the doctor's term) sounds in my lungs. I spent as much of today out of bed as I could. In another chair, usually the recliner, but plenty of walking too.

I keep making my lists of things to do whether or not I get them done. And I'm working to record important facts I think my kids need to know. Where the owners' manuals are for tthe built in appliances. Which Christmas presents are most treasured and why. I think I am pretty organized, especially after the last 2 years, but it's just almost organized. There seem to things not quite finished all the time. Anybody who has this stuff in the bag, stand up and be counted. The rest of us need your assistance.
~Cathi

"I got you into this...."

2010-09-09T18:00:00.003-05:00

A very busy week, with a post from Janice again.
The white count nudged upward briefly on Wednesday, then stepped back down to .1 again. Cathi requested some WBCs from Dr. McGuirk and he told her it would cost her a dollar. She reminded him that he told her "I'm going to get you out of this because I got you into it." Which he gamely conceded. So it seems that the rising white count, when it comes, will be gratis. Or would that be pro bono?? Doc says it's time for the counts to start recovering, WBC first.

After a couple of days of no vomiting, it came back again. Dr. McGuirk hypothesized a possible virus in the stomach and started medication for it. Now we are on day 1.5 of no vomiting, after losing breakfast on Wednesday but nothing since then. Good news!

Homegoing has not been discussed yet but Cathi speculates that when she can keep a thousand calories down, that will be the point. "A thousand calories--three candy bars," says Janice. And Cathi obligingly breaks off a piece of that Kit Kat bar and eats it!
It's been good to see old friends behind the yellow isolation gowns on 41. And some new nurses, who are doing a bang-up job as well.
It's time for the changing of the guard, as Janet has arrived from England and will be stepping in as caretaker. ""It's been lovely, Mma. Maynard. Thank you for the lovely visit!" "Yes, Mma Schlichting, it has been lovely!"

Unit change

2010-09-06T20:59:00.002-05:00

Yesterday I moved into Unit 41, the bone marrow unit at the hospital. I wanted to be over here with my favorite nurses who knew me and my disease. There's been no shortage of excitement, even though I still feel lousy.

A hot spot developed on the back of my arm behind the PICC site, so first I got a new PICC line. Today, unexpectedly, I had an ultrasound of the arm even though it's much better. The scheduling on a holiday weekend has to be done carefully--omitting the word "staff" from the order caused the sonogram to be scheduled for the next business day.

Never mind, we forged ahead. Janice has booked a massage for me for tomorrow morning. McGuirk approved it and Janice has made careful plans for sterilizing the table and getting it all in here. and THEN we learn that I am scheduled to have an endoscopy first thing in the morning. This took some more calls to ensure I am the first scope of the day. Calls from the nurses, signs in Endoscopy. Threats from Janice if I am not back in my room by 9:30. Janice is a force. Today she shamed two nurses from Radiology into taking me back to my room, in lieu of waiting longer for "transport." (I shall have to write about transport sometime. It is an underground organization here.)

Currently I feel lousy. We have no target dismiss date. I am unable to keep much food down. Today even eating or drinking causes nausea. There are all sorts of creative solutions being thrown around. At the moment I have a seasickness patch behind my ear and that has been the most helpful. There is no shortage of anti-nausea drugs, but they're not doing the job. McGuirk has decided perhaps this is a stomach virus which is the reason for the endoscopy tomorrow. He already changed medication based on that. I am still getting almost all medication via IV.

Dr. McGuirk's closing comments today (aside from a crack about the massage) were to the effect that he had to get me out of this mess since he got me into it. The grace to feel bad.
~Cathi

The Big Green "N"

2010-09-02T22:46:00.002-05:00

N is for Nausea. And that is the hurdle Cathi is faced with now. (Janice posting again.) The constant throwing up has ceased and the plan for each day now includes NPA (No Puking Allowed). But the stomach is queasy much of the time and food just isn't quite making it to the top of the list. Slowly but surely, with the help of a number of anti-nausea and anti-emetic drugs, this is improving. In the meantime, we are still at the hospital, getting TPN.
Seven laps around the floor today, in two installments, so the strength is returning. Chemo-brain is gone, if the completed crossword puzzles are the evidence. All we need now is blood counts to start back up (Doctor M. says next week on the counts. "It's too early."), and appetite to make an appearance.

No one has actually mentioned a discharge date yet: Cathi says when she can consume five or six hundred calories in a day and keep it all down, she will feel ready to discuss home-going. Stay tuned!

Another day at the spa

2010-08-29T09:34:00.002-05:00

The KUMC spa, that is. Update from Janice. Things are going better for Cathi. Compared to the last time she was here, as in chemo timeline, she is doing better in most ways. More energy, perhaps less pain, more strength. She is getting dietary supplements and that is surely a big part of the picture. There was the surprise visit from parents and sisters/sister-in-law yesterday--all at once, but the hospital staff didn't seem to be upset with us having a family reunion in room 4227. So now the goal is to get home. Cathi is hoping for mid-week. Stay tuned for updates.

To the Hospital we go

2010-08-27T21:49:00.002-05:00

Conor here...

Mom landed in the hospital yesterday with fevers and general not feeling well. She was feeling better prior to fevers kicking up today (but better tonight again). Much of her discomfort is not eating. So this evening they started IV nutrition in order to help her out.

Dr. Ajitawi leaned down today and told Mom that he loves her. I asked if she gave him a hickey like he had several years ago. :) We had a good laugh about it since she'd forgotten about that one. He's obviously the youngest of the crew yet has been a great doctor the past 2 years.

Not a lot else to report. Main update is she's in the hospital but they do anticipate her checking out sometime soon so long as she can get some food in and the fevers will stay low.

"I am not a Pollyanna." Joseph McGuirk

2010-08-25T15:37:00.004-05:00

I'm sorry for the long dry spell of news. I've been trying to get organized a little bit and figure out next steps.

I spend most of every day at the clinic getting supplements (blood, platelets, potassium) and have been coming home with overnight packs of more fluids. Since the second round of chemo ended Sunday I feel pretty lousy most of the time and have had trouble keeping any food down at all.

Yesterday I met with a pain management doctor (palliative care) who I met with in the hospital last summer. She came up with a couple of creative ideas that have reduced the vomiting considerably. So I am more comformtable than I have been.

Today, Dr. McGuirk stopped by my little pod at the clinic and we had a one on one conversation. He opened with "I am not a Polyanna. I have to tell people they're going to die frequently in this practice over the last 20 years." He also predicted that I will feel worse before I feel better after this second round of chemo. For about 5-10 days. Hopefully I will not experience all the uneasy options, but I guess it's likely I might have one or two more than I do now. I can't imagine anything worse than the nausea and vomiting but my mind has kind of shut down much of the pain and symptoms from last summer.

Anyway, the upshot of our conversation is that he thinks it's possible to get me a couple more years on this earth, always reminding me that I am in charge. Right now the track is set until we reach the point of deciding whether to do a T-cell booster from my brother. Some other things have to fit into place between now and then (PET scan, bone marrow biopsy) but that is the next non-passive decision.

A T-cell booster, if successful, will cause more graft v. host disease. It will also be a long shot to hit the little window of success that McGuirk believes exists because the biology of my leukemia has been very different than any other he's worked with. My personal reaction is I may not want to live two more years like the last two. Isolation, pain, nausea, vomiting, midnight runs to the hospital, etc. No matter what McGuirk believes and hopes. There is a quality of life question here to be considered.

So I am setting in motion the actions to wrap up my life. Things to leave for my grandkids, nieces and nephews. Sorting out my business, which if you are a customer, I will be contacting you with some options in the next 10 days to 2 weeks.

Chloromas are terminal. Sooner or later. There is something about the science of the cells needing to be able to move in and out of the lymphatic system. And repeat transplants make the cells stickier and stickier so they don't move easily. They get stuck and they create chloromas.

I welcome your comments as always here. Love your cards. I'm interested in ideas and plans for this end of life stuff. Feel free to call and schedule a visit. I'm open to talking about all of it, crying about it, laughing about it.

My sisters, brother, and cousins and parents have been steady sentinels for me over the last weeks. Conor and Annie and Mark visited last weekend with the grandbabies while I was still feeling relatively sane if not "healthy." This Saturday we are having a blowout family gathering in my backyard, moved from its previous destination of the park. I am fortunate to have a huge backyard, overlooked by a huge deck (which I built myself!)

~Cathi

Editor's Note (Conor here)
Mom asked me to review this post and I wanted to leave what she'd written in tact as they're her words and there's nothing I want more than for her to 'own' the rest of her earthly time.

That being said, I want to add that McGuirk said there's a 'glimmer' of hope she could make it through this. Yes, it's < 1% but it's a glimmer. The only things we know definitively are what Mom alluded to above as well as the fact she is completely done with chemo. There's no reason we would do another round, which is welcomed news after who knows how many rounds the past 2+ years.

The way I've been explaining it the past week is that on 7.12.08 (the morning after her initial diagnosis), we sat in her hospital room and said 'ok, if you don't make it through this, this is what happens.' And we agreed to put the negativity aside and focus on surviving - never discussing again what would happen if she didn't make it. Now we do need to acknowledge that negative option is 99%+. So we make plans accordingly and enjoy the time we have.

This isn't the first nor last time I'll say this, but I want to let everyone know we, as a family, appreciate the tremendous support we've received since 7.11.08. It's been an amazing feeling getting everyone's emails, cards, phone calls, Facebook posts, and visits / caretaking. And as a son I cannot express how proud I am of the fight mom's put up. She's always been strong, but this ordeal has made it that strength even more apparent. I thank God daily for such an amazing mom to learn from and befriend. And I'm more than sure that everyone reading this would agree.

A beutiful World

2010-08-18T21:55:00.004-05:00

Jason Black, Cathi's cousin, took this picture of the Lillie's in front of her house. It is a great picture, and was taken with the sunset in the distance, and it just brings out what is really nice in the world. All this just right outside Cathi's house. It is a reminder of the Louis Armstrong tune 'What a wonderful World.'

Cathi started Chemo again today at the clinic. This is the second round of chemo for the chloroma. It was planned for 4-6 weeks in the future. Since the chloroma has responded positively from the first treatment it was decided to jump while the iron is hot. Cathi is still not able to keep meals down regularly, but her counts are improving every day.

The treatments will be much the same as before. Chemo at the clinic with another treatment in a to go IV bag that she carries home. So this is a good thing to keep her at home for as much as possible.

Conor & Annie and their two babies will be down for the weekend. They come in on Friday and then fly home early Sunday morning. Gail continues her vigilant watch with Cathi. Gail will be going home on Friday afternoon.

The night before treatments was celebrated with a nice dinner with her cousins Jason, Sara, Gail, and her brother Walt. It was highlighted with a home made lemon meringue pie that he had a special recipe to make it with no dairy products for Cathi. The pie was great and as soon as Cathi realized it had no dairy products in it she quickly finished it. This was one meal that stayed down. The Pie was incredible. Jason is a great cook.

"Mondayness" is a good description

2010-08-16T15:27:00.002-05:00

Thank you Robbie for the very descriptive word.

Gail writing again.

Mondayness. n. describes the feeling of overwhelm that arrives at the beginning of the week or accompanies any new venture.

That certainly describes today quite accurately.

Cathi put together a list of things she wanted to discuss with the medical team. When we arrived at the clinic today, the list came out and Cathi started looking for answers. When is the PET scan? When does the next round of Revlamid begin? Will there be another round of chemotherapy? Is there another Bone Marrow Biopsy schedules? Why is there still nausea even though chemo has been over for a couple of weeks? WHAT IS THE TREATMENT PLAN? IS there a treatment plan?

These questions have been accumulating for a while, but there has been such attention being paid to the day-to-day routine of "let's get through today first" that the questions have been pushed aside. Until now.

Neither the nurse practitioner nor the case coordinator had any real answers for Cathi. That lack of info has left Cathi in the dark about the future, creating a lot of anxiety. Since the beginning of the AML ordeal, there has always been a plan. The medical team knew what they were dealing with, what to do, when to do it. Chloroma is different. It is rare and it was not on anyone's radar to have a plan. Cathi was able to communicate her frustration very clearly today.

Cathi now has an appointment with Dr. McGuirk (the head of her medical team) on Tuesday early afternoon. She is expecting to get a lot of information about what the treatment for chloroma looks like. It might be good news. It might be bad news. But it will be more than what she has at this moment. Today, it is a distinct feeling of helplessness since she has no idea what any of the medical team has on the plan for the next steps.

She now has a plan to get a plan. It is a step forward.

There was positive news today with the blood work: the potassium is in the normal range. As is the platelets. Most of the other tests are either already at normal or very close to it. This is very good news - she did not have to have any IV supplements today and her next scheduled lab appointment is Wednesday.

The nausea is slowly abating and Cathi has been able to eat a lot more than just a few days ago. She lost nearly 30 pounds over the last few weeks. Time to get some meat back on those bones so I'm working at making appetizing food for her to eat. She likes eggs. I can cook eggs. She likes sherbet. I can scoop it into a bowl. She likes smoothies. I can work the blender. I hope she likes my cooking. (I'm kidding. I know how to use the microwave too.)

The pictures Cathi has been getting of her beautiful grand babies have been coming in regularly. Those are two incredibly adorable children, Harrison and Ella. They will be here to visit (with their parents Conor and Annie) in about 10 days. It is on the calendar in really big handwriting for Cathi to see and plan for.

Having plans is a very good thing.

Eyes Wide Open

2010-08-14T22:02:00.002-05:00

From Gail:

Today was more eventful than we thought it would be - all good - but it made for a very long day.

The "quick" stop for lab work at the Cancer Clinic (10:30 a.m. appointment) turned into a 3 hour visit. Cathi's potassium continues to stay JUST below the bottom of the normal range. So, they hooked her up to the IV pole for a mid-day boost. She also got platelets again. All the other counts are inching toward the normal ranges while the potassium and platelets are behaving as expected. Cathi goes back on Sunday morning - at 9 am or before - to get another dose of potassium. [Gail has learned an important lesson: do not anticipate the lab results. It might work for an office pool, but the reality is it's just like that box of chocolates - you don't know what you're going to get.]

The big accomplishment for the day is that Cathi stayed awake all day. Her first nap was around 5pm. Yesterday at the clinic we discussed with the nurse Cathi's lack of awake time. After reviewing the meds with the pharmacist, we learned that the anti-nausea med has an added benefit of causing drowsiness. The pharmacist suggested cutting the tablets in half and still getting an anti-nausea effect. BINGO. Wide awake almost all day while having fewer episodes of nausea. She is safely tucked into bed now.

Cathi's brother, Walt, stopped by this afternoon and installed a new phone jack in the kitchen, which is open to the family room where "Cathi's Chair" is located. The end of running to the front of the house to answer the phone. YEA!!

Thank you to all of you who have sent Cathi messages, texts, emails, and voice mails. It is helping Cathi get her mojo back with all the good wishes & love being sent to her. Keep sending that mojo!

Being Perky

2010-08-13T20:20:00.003-05:00

Cathi's cousin Gail here. No, I'm not perky and it's not a word I would use to describe Cathi most of the time. But, today she has perked up. She woke up this morning with a little tiny bounce in her step and that great big smile we know and love.

Last night we implemented the policy of "take a Tylenol if your fever is going up to see if it goes down" and, indeed it worked! It's a fabulous policy allowing a decent amount of sleep and no calls or visits to the med center.

This morning, after a breakfast of a huge bowl of pills that we have learned can be split and mashed into tiny bits - making them ever so slightly easier to get down - we dashed off to the clinic where Cathi finished up the last of the IV antibiotics and another round of potassium. The potassium takes . . . f o r e v e r . . . to drip through - it cannot be delivered quickly due to some medical reason that I am not grasping but know that if it could be delivered faster we would demand it. It was almost 4 pm by the time we got Cathi home.

The good news: WBC counts continue to rise. This is absolutely great since it shows that her bone marrow is working. The other counts that need to be higher are slowly rising as well. It doesn't always look like a lot from one day to the next, but when it's charted out it is obvious that Cathi is on an upward trend! It will be a slow climb, but it is most definitely climbing.

Cathi's not scheduled for any time in the clinic beds over the weekend. She has only a quick stop at the clinic on Saturday and Sunday for lab work to make sure that numbers are where they need to be. That means more time at home working on getting perkier. (Hopefully she will find that as amusing as I do. Seeing her laugh is such a treat.)

Love you so much my dear cousin!

Crosswords puzzles and Disappointments

2010-08-10T18:25:00.003-05:00

Well. Three days of steady improvement. Two days of no fevers. Time to go home. and then what?? A fever. Dang, I hate it when that happens. So Cathi is not going home today but the heavy duty antibiotics are dripping and the fever has broken and it will happen soon.
In the meantime, things are looking up. The blood counts are beginning to recover from the chemo, right on time. Thanks to the healthy marrow, Cathi's white count is now 1. The white count recovers first, so this is a celebrated happening around here! The general malaise that accompanies chemotherapy is receding, energy is gradually returning, color is improving and the tumors are all but gone. All great stuff.
The primary indicator of improvement has got to be the crossword puzzles. Even with what she describes as "chemo-brain," Cathi completed the NY Times crossword puzzle yesterday and is more than half done today. Those who have worked these puzzles (KC readers, they are in the sports section, NOT the comic pages) can attest to completion as a sign of progress! FYI, the Rap singer's road crew is called a posse.
Cathi's posse is still sister Janice, to be replaced by cousin Gail later this week. Stay tuned for further developments!

WBC-check! Fevers-check! Next; Home, James??

2010-08-08T17:18:00.003-05:00

from Cathi: What I have now is a type of leukemia that colonizes in tissue rather than blood or marrow, as usual. It's very unusual, called a chloroma, but it gets treated like leukemia.
Chemo to the edge, neutropenic diet, isolation while the counts are down and high hopes for when they come back up. The two tumors happen to be in my breasts and they are shrinking rapidly. I have been in and out of the hospital a lot though I am staying at home with a caregiver. I am in the hospital now while they try to figure out the cause for an unknown fever. The tumors are positive for 5q- and this is good. Chances are we won't have any big information till near the end of August.
At that time we will do another PET scan and decide next steps, which could include another round of chemo.
I apapreciate everyone's thoughts and prayers. Cathi

from sister Janice: After several days in the hospital we are anticipating getting sprung from here on Monday or Tuesday. Two days without fever, the docs tell Cathi, and one of those days is history now.
There is some speculation that the fevers, and some lung congestion, could have been caused by one of the arsenal of meds, Revlimid. This stuff is the big guns, the stuff that boosted the slipping graft into the winner's circle last winter, and is really important. Fortunately, it is taken in 21 day cycles, and this is break time.
The blood counts are recovering from the chemo, Cathi's energy is coming back, and the idea of going home is the main thing right now!

Almost like home

2010-08-05T23:57:00.001-05:00

From the conversations and hellos in the hospital Cathi is almost a regular in the BMT ward. Monday at the clinic the blood pressure fell lower than the clinic staff was comfortable with so it was off to the hospital. This time in her own personal carriage. Not the best way to go, but none the less a deluxe ride. It comes with the frequent guest program.

This time it was to the other end of the BMT ward to room 4112. While they did not dance like the last time she arrived, the nurses all commented how nice it was to see her. The blood pressure came back up to the normal range for Cathi, which is lower than most people.

Platelets, blood, & potassium (oh my) are all almost a daily routine. There have been a few days where the food came up just as easy as it went down. After a few days the food is starting to stay down better, and the nausea might be starting to let up. This is all normal, unwelcomed, but normal as part of effects of chemo.

Janice and Walt have been keeping company with Cathi. Walt brings the paper in the morning and Janice spends most of the day with her, with occasional visits from Mom & Dad, and a few select guests. Yesterday's highlight was a close cut from Robin, and Cathi is sporting that GI Jane look that she wears so well. It was tough to see the hair go again, but all part of the regimen.

Tomorrow the highlight is the much not awaited to take another look and biopsy's from her lungs. Never a good experience for them to stick and prod down inside the lungs trying to figure out what is down there. But the fight is all out and tomorrow Cathi goes in to get her lungs looked and poked at. For all the times they have done that before the results have been minimal, but they keep at it until they find something. Remember that Cathi has the pneumonia causing fungus in her lungs that is a permanent resident. Only by using the right drugs can they keep the pneumonia brothers at bay. While there has been some fluid build up and slight pneumonia in the lungs, she is doing remarkably better than in the past.

Spirits for Cathi are not always high, but each time the door opens, a new nurse or aide pops in and a smile comes on her face and they catch up on what has been happening in the past year or six months. After they leave Cathi fills in the rest of the story from the events they were talking about when she was in almost a year ago.

Still Home sorta

2010-07-31T14:53:00.002-05:00

Spent thursday night in the hospital with a fever, getting loaded up with platelets and the inevitable potassium. Left the hospital to go straight to the clinic for more potassium I can't eat enough to get the potassium up and the oral medicine is hard on the gut, so more IVs.
I'm now getting 3 antibiotics at home via IV. The doctors think they are very clever "CDE" Caspofungin, Daptomycin, Ertapenum.

The full effects of the chemo are kicking in. I'm losing my sense of taste, spending a lot of time sleeping, and not very witty when I'm awake. My sister Janice is here for the next two weeks and it will be nice to have that consistency though everyone has been very generous about stepping in and staying with me.

Hopefully I'm about halfway through the low spot and can get across the other half with no mishaps.
Walt has done a fine job updating the blog and you will probably hear more from him.

There's no place like home

2010-07-28T23:42:00.002-05:00

Cathi woke with a spring in her step and the wind on her back on Wednesday. This could only mean one thing - home again.
After more lasix and subsequent loss of fluids, the oxygen came off and she was walking laps. Since the fevers were also gone, she was allowed to come home. She is back in her house, keeping a low guest list and resting and recuperating.

A Day Hanging with my girl Robin

2010-07-27T20:59:00.002-05:00

Today finds Cathi still in the hospital hanging with her pal Robin. Robin was the nurse that was there in room 4101 when Cathi checked into the hospital back when this all started on July 11, of 2008. (Now better known as 2000 Late). So Robin is there to say hi and help Cathi through the days. Robin is such a great nurse with a presence that just fills a room with smiles. Great to have such help.

The fevers have come down and Dr Ganguly says, 'You had an infection, and we have fixed that.' Her esophagus is also healing and she will start soft food again. So this good progress and Dr Ganguly is always quick to point out that "We have fixed this to."

But now he is not committing time to go home and is keeping her in the hospital because of her lungs. There is some noise from fluid in the lungs. A CAT scan was ordered to look at the tissue in her chest to see the progress from the Chemotherapy and also to look at her lungs.

No news on when Cathi will be getting to go home, but every morning the question is asked 'When can I go home?'

Another Day, Another plan

2010-07-25T19:28:00.003-05:00

It was another up & down night in the hospital. This time it was up and down fevers all night. The pic line cultures came back positive for Staff, so the culprit for the fevers has been found. In the middle of the night new pic lines were ordered and at 2:30am the team was assembled to insert new pic lines into her right arm. This time a new location was picked and the lines went right in. So after all the excitement was over and the X-Ray came in and verified the pic lines were in correctly on the first pass.

Dr Ganguly came in happy that the staff was identified, noting that these things just happen. Not the cause of anything that anyone does, it just happens. So the treatment is a daily antibiotic drip. The good news was a going back to the original plan and going home on Monday if the fevers disappeared. But, he was quick to note that she was very susceptible to infections and it may happen again and she would be back at the hospital.
The fevers did not go away and the day was spent watching fevers get up to 100.5 degrees, then some Tylenol and then the fever would drop.

Food is still slow going down and the diet is mostly jello and orange flavored ice. But the esophagus is healing well and even though pills go down slowly, they go down without damage. j Just when all the excitement had settled down the Dr ordered Lasix to drain the fluid build up. Being in the hospital with constant fluids coming in the IVs' can create fluid build up in the chest. So the Lasix was ordered to keep the fluids buildup down, even though the lungs still sound clear.

So with the fevers it is unlikely Cathi will get home on Monday, but it is encouraging to know that the infection has been identified and the cause of the fevers is being treated.

Not another boring Post

2010-07-24T21:33:00.002-05:00

The day of the boring post ended with a trip the hospital for some platelets. The platelets were the easy part. It was when the nurse showed up with 4 bags of potassium that it was exciting. Each bag is only 50ml, but has to drip over an hour. So Cathi got fluids, platelets, potassium and fell right to sleep. While her donor host stayed up in the hospital. This was Thursday evening.

Friday after losing to much weight she was admitted to the hospital, in order to watch her closer. The below is Cathi's note going into the hospital.

Hello everyone,
After a somewhat chaotic week I have checked in to the "big house" room 4101.
I was having trouble eating and drinking without pain and I vomited blood a couple of times. So today they did an endoscopy and determined the problem is my esophagus is oozing blood--a side effect of the chemo.
So I'm in for the weekend and I'll have a diet of clear liquids along with a Nexium IV. Who knew they could do that? Already I have been able to swallow liquids without pain so I expect the gullet to heal quickly. The good news is there is no esophageal damage causing the bleeding.
I cancelled my trip to Italy today before all this happened. I was using a lot of energy fretting about it and I need this energy to work on my recovery. Janet and Robbie were magnanimous about it which helps.
I learn bits and pieces about my treatment plan every day. I guess it is going through revisions constantly as the doctors talk to other transplant centers. Today I heard that there is a plan for a second round of chemo 8 weeks after the first. It is frustrating to feel like I am not on top of things as I think I usually am. Perhaps getting Italy out of my head will make room for more treatment info. And hopefully seeing docs regularly will net more information too.

So I'm putting my money on the Revlimid and getting ready to paddle like crazy.

A boring post

2010-07-21T21:08:00.002-05:00

Clinic day today. I had a restless night with heart dancing. I guess that's part of the chemo and other drugs I have. I can sit up and bear down to stop it, but it kept starting again last night. Very distracting. Gives me a better understanding of why it rattles my mother so much. I've never had it last so long.

WBC .3, Platelets 5, Hemoglobin 9.8
Counts are going down pretty fast. I got platelets today but still a pretty short day at the clinic. Besides that I slept most of the time. I came home and slept some more. Sara and I hooked up the Caspofungin, simple. She is a pro.

Cousin Jason came over and helped cook dinner and Walt is here to spend the night. Sara went off for a night with her husband.

Mom and Dad are still at the lake with Mari and her husband and sister Lori. Having a great time. This is a good thing.

Seems like there should be more news or humor or something but I'm flat out of originality. I'm taking Ativan to keep from getting nauseated and plenty of other meds as well.

The current schedule is clinic every other day. It's nice to have a day off in between. Not that I am accomplishing a whole lot, but it's nice to not have to get up every morning and rush to shower and eat and get down there. Thanks home health care for the IV Caspo.

From your boring patient.
Cathi

Some relatively good news

2010-07-20T07:58:00.002-05:00

I have a day off from the clinic today. I will be getting the anti-fungal drug Caspofungin daily via IV, but home health care is going to set me up with the tools to do it at home. So I'll be free to move around and do things. These last five sedentary days have taken a toll. The caspo is to protect my lungs since they are prone to pneumonia when the counts drop. So far only the platelets have dropped significantly.

The good news is that the chloromas tested positive for 5q-. This is the enemy we know. I started taking Revlimid last week as soon as I had the diagnosis so we will continue that. Together with the chemo we hope to knock it out quickly. 8 weeks.

An odd note is that I met with Dr. McGuirk who is normally ultra optimistic and he had a long face. "This sucks," he said. He had just returned from a long vacation and the first thing up was my boob leukemia. I think his head was not quite in the game yet either. We are still positive with the marrow being 100% donor. Whether a booster will be possible at the end of this treatment will depend on the amount of graft vs. host still present. Right now there is still quite a lot.

My cousin Gail returned to Denver yesterday but not before scoring all 3 Austin Powers movies so I'll get all up to date with the Fembots and go around saying stupid things like "yeah baby." Cousin Sara will be here the next few days. Friend Sara brought dinner last night and neighbor Jenn brought fresh roasting ears from her parents' place. All kind things.

All much appreciated.
Today I want to run some errands, set up the sewing center, and perhaps begin clearing things off the dining room table. It has become a clearing house for items on their way someplace else. And it is a BIG table so lotsa stuff.

Conor sent some new pics of the babies so I will post a couple of those when I get them on the right computer.

Friends are sending much appreciated jokes. And I am thinking about what to do to get my mojo running again.

~Cathi

Monday, Final day of chemo

2010-07-19T07:00:00.002-05:00

The chemo has been going smoothly. I'm actually gaining a little weight so that's a pretty good indicator that the stomach has stayed settled. I'm aiming to eat 70-90 grams of protein every day and if I slip in a little snack like an ice cream bar, that ups the calorie count considerably.

Plus I have been laying around a lot. Four hours at the clinic to get the chemo, then not a lot of activity at home. I seem to rev up around 5 or 6 o'clock in the evening and go tidying. I walk the halls of the clinic, though they are VERY busy at times. And I've walked the aisles of a couple of stores just to get some steps in.

I expect to see Dr. McGuirk today and get results of the outstanding tests. All the cultures that they have run following the two fevers I've had came back negative. So that leaves the biopsy for which I'm holding my breath.

This all came up kind of suddenly. I do regular self exams of my breasts. But one day in the shower I noticed a very large mass in my right breast. I often get cysts and I'd been drinking a lot of coffee so I assumed that's what it was and I didn't say anything for a week or so. Then I told the nurse I needed a mammogram to look at this weird lump and she said oh, it's probably graft v. host and just have the doctor look at it next week. The doctor said that doesn't feel like graft v. host and ordered a biopsy. This was in the middle of all the 1 year workup tests and I didn't say anything because I didn't want to worry folks, and because nobody at the clinic was particularly worried.

I went in for the biopsy and the radiologist (very pointed head) would not do it because my platelets were only 67. He insisted I had to have an infusion of platelets before he would do a biopsy, pointing out that we weren't in a rush here. So we scheduled another day to go to the clinic and get platelets, then go downstairs and get the biopsy. Surprise, the platelets were 73 and the blood bank wouldn't even send platelets for a count that high. Three hours with needles for nothing.

So I go down for the biopsy and Dr. Pointed Head comes in and blows smoke up my skirt about having platelets on standby if I need them. I'm laying on the table with no IV. I KNOW the blood bank wouldn't send them over, and even if they did by the time the nurse put in an IV and hooked up platelets, simple pressure would have stopped any bleeding. Bite me.

So he proceeds with the biopsy, all the while telling me how good he is at doing it and calling me ma'am. I said "I'm Cathi and I'm fine." He finished and he said "Now that wasn't bad was it?" I replied "That's what I should say to you, you're the one who didn't want to do it." When he came back in to do the second breast he was slightly more solicitous but he is a poster boy for doctors with a poor bedside manner who become radiologists.

Everyone thought, including Dr. Pointed Head, that the biopsy was to determine whether the lumps were graft vs. host or cysts. Nobody was expecting them to be leukemia. The second lump turned up in between the biopsy order and the appointment. It's not as large, but still good sized. Just overnight.

So these are chloromas. Colonies of leukemia cells in tissue rather than blood. The treatment is basically the same. Kill the leukemia. The chemo we are using has a 35% success rate. As always, I might as well be in the 35%. There are some other options, but this looks like the best one.

Dr. Abhyankar gave me a little pep talk about how positive I am and how no matter what happened, I've stayed positive through a long course of treatment. So just keep the positive attitude and we'll get through this as well.

He is careful to say that they don't have a lot of experience with this; that none of the bone marrow centers do. I can tell when one of the doctors or nurse practitioners sees me after they've been chatting and they come up with ideas. They are always more upbeat, sometimes even excited.

Of course today I expect to see Dr. McGuirk and he is always excited so I'm looking forward to that.
~Cathi

Early start to Chemo Day 3

2010-07-17T21:36:00.002-05:00

This morning I woke up with a high fever about 4am and after calling the doctor, Gail and Mark and I loaded up and went to the hospital. Blood cultures, antibiotics, fluids and sleep. We went from there straight to the clinic and got the regular chemo.

Still no results of anything. Not from the biopsy, not from the other little tests they've been running.

This morning as I left the hospital, the day shift was getting started and the nurses were all so happy to see me (in the bittersweet way.) They said I looked good, and even sick I probably do look better than when they last saw me. We talked about my new grandbaby and their new dogs. It was just really positive. "If anyone can do it you can." "Just a bump in the road for you."

This afternoon I went back to the hospital to get the take home pack disconnected and saw a different bunch of nurses and they were very positive. It was good to let all that wash over me. We had a laugh about boob leukemia.

And the best part is if I have any more fevers, take Tylenol and go back to sleep. I don't have to call. Long as the fever goes down I'm good. They reckon the fever is just from the chemo and nothing sinister.

Still eating and drinking. I am a little weak but I get bursts of energy through the day and get a few things done. Conor went home today to spend time with his babies that he hasn't seen for about 10 days while Annie has been visiting her parents. Having him here was a shot in the arm. Mark is just awesome to have around. Both boys waited on me as much as I would let them. Mark will be here through tomorrow.
~Cathi

Chemo - Day 2

2010-07-16T21:32:00.003-05:00

No biopsy results yet. I saw Dr. Ganguly today at the clinic and he was very upbeat. He said it will take 7 to 10 days for the counts to bottom out, then 4 to 5 weeks for them to come back up. When they come back up we will do another PET scan to make sure there is no more chloroma. I like the sound of that.

He described the chloromas he as seen as small, describing a very small circle with his finger and thumb. That's me, always different. My dad told me from a young age to "be an individual." I guess it's in my blood (pun intended.)

My kidneys showed high uric acid so I got another drug for that. That is one of the things they will be watching closely. This morning they drew blood in different color tubes for the special tests of my liver and kidneys. I'm pretty familiar with what each colored top on the vials for blood means so now I have added a new blue to my knowledge base.

Conor is here and took me to the clinic today. We watched the British Open, even during the hour or so it was called for high winds. He did a lot of work, I did a lot of trying to get comfortable. For some reason my butt just hurt. No matter how I adjusted the bed. I did the crossword puzzle and it was handy having Conor there for the sports questions I didn't know. (Sometimes I text him with these questions to solve a puzzle.)

Mark arrived this evening. Cousin Gail arrived this morning. Mari and Mom and Gail went to work on the house and it is now thoroughly sanitized and ready for neutropenic living. Which is the plan from now on. No fresh food--it all has to be cooked. No raw nuts or pickles or tofu or anything fermented. Lots of protein.

Then there is the "use only this bathroom" and nobody else can use this bathroom. Sanitize hands all the time and wash them in between.

But I will be at home and I can sew and I have a few projects sitting here waiting for my needle.

I have been able to stave off the nausea with Ativan so far. I can feel the chemo brain fog drifting in. I keep saying I don't have my fight on, but Conor says I do, and Mark says I do. They say you're asking what's the next thing and you're doing it. That's how you do these things. That's fighting. So maybe it's just that I still have moments of tears and fears that are rattling me.

I reckon that's normal. Got tougher odds, got oddball cancer, and got a tired trooper.
~Cathi

Outpatient Chemo

2010-07-15T17:09:00.002-05:00

Things have changed and morphed by the hour over the last few days so I'll just get the current situation ticked off and another time I will give the low down on how we got here.

The first good news is I'm getting treatment as an outpatient. It took an extra day to get things organized but it started today. I spend several hours at the clinic, then leave with a take home pouch of chemo and a special chemo-spill kit. We civilians are not allowed to disconnect the pump because it's chemo, but my nurse of the day, Mary, volunteered to come to the house an unhook it so I don't have to wear it all night long. (And so I can shower and change clothes.)

The next good news is the PET scan shows no cancer except the lumps in each breast.

More good news is the insurance company approved the chemo drug clofarabine. They were balking and said it would take days and Dr Abhyankar didn't want to wait days and KU decided they would cover it if the insurance company would not. They put their money where their mouth is. However after Dr. A sent journal articles citing its efficacy, they agreed to cover it.

The PICC line went in smoothly--I was not looking forward to that. The last time I had one inserted it was a very uncomfortable, hour long slog with a lot of bleeding. Today's was just a few minutes.

This type of recurrence is rare. Not only has the KU team not seen it much, neither has any transplant center in the country. So they are all taking and sharing information to plan next steps.

The hope is that the chemo and the Revlimid will work together to shrink the tumors. And of course that my liver will not choke and the bone marrow will remain 100% donor or close.

Tomorrow we hope to have results of the biopsy showing 5q-.

I am bit horrified to be in this elite group. The fight in me has not taken hold. My sister Mari is here with me now. Conor and Mark are coming. My cousins Gail and Sara are coming and my sister Janice. So I have a lot of coverage up front here.

I'm guessing this will take about 2-3 months to work out. I want to stay at home, but of course I cannot be alone so I will be looking for companions. Mom & Dad are ready and willing to have me move back into their house but I have my place fixed up and comfortable and I would really like to be able to stay at home.

Ok. Check tomorrow. The plan changes at least twice a day. yesterday it changed hourly.

I'm thinking Fembots for a visual. Robot breasts firing bullets full of cancer cells. Anybody else remember this from Austin Powers?
~Cathi

Some not good news

2010-07-13T18:20:00.002-05:00

I have leukemia in my breasts. Big lumps appeared overnight and are apparently escaped leukemia cells that have now colonized. The medical term is "chloroma." Dr. Abhyankar hasn't seen one in 10 years.

So I go in the hospital tomorrow and start chemo. A 5 day regimen so hopefully I will get out Sunday or Monday. I started taking Revlimid again today. We think these two things will combine to kill it and seal the entry.

However, we are still gathering information. Tomorrow I will have another biopsy to determine if 5q- is present. We hope it is. We hope this is renegade cells still swirling around my body. Today I had a full body CT Scan that showed no other chloromas, but tomorrow I will have a PET scan to make sure.

The lumps or even the breasts could be removed surgically, but that is not a solution. The problem would still exist. You have to cut off the cells as they circulate.

PICC line, nausea, hair loss (no leg shaving!) neutropenic diet (no salad,) isolation, and all the other stuff that goes with chemo. This is another full blown round. I cancelled my hair cut and dentist appts.

The good news is that the bone marrow graft appears strong and 100% donor. We will see how things hold up through the chemo but at this point we're not talking about another transplant.

I don't quite have my head in the game. My head is saying "I thought we were finished paddling this canoe." But I am sure that I will figure out a way to consciously fight this.

It is again a game of action and reaction. Check the research. Check with other transplant centers. Check where we've been.

I guess I should think about some inspiring things to take with me tomorrow and have on the wall of the hospital room. Perhaps some pictures of Harrison and Ella. Perhaps that one big card that flushes when you open it.
~Cathi

Tiles of Hope and 1 yr workup

2010-07-06T21:27:00.006-05:00

Today I hit the hospital and the clinic for my "1 year workup." The tests went as expected, but things happened that were thought provoking.

I started down at the hospital for a Pulmonary Function Test and that went well. The technician said my numbers were higher than last time. Hopefully this means that the GVHD is abating perhaps a teensy bit. The tech also mentioned that she had seen some patients whose lungs were really compromised by GVHD. Now, how lucky am I? My lung function is over 100% of normal. I was frustrated after the last one because it was only 115% or so instead of the pre-transplant 150%. I had a horrible time with my lungs after I got leukemia and I often asked if people with these kinds of lung problems ever recovered completely.

But I am one of the lucky ones today. I remember well not being able to suck in a proper breath when I was in intensive care. I was so irritated! I thought "I know how to breathe. Several different kinds of breath. And I can't do any of them." Today I do not ever have to gasp for breath.

Then I headed for the clinic for the blood work and bone marrow biopsy. I stepped off the elevator on the 3rd floor and there is a board with "Tiles of Hope" on it. I looked it over carefully and sure enough, there was my tile. Tiles of Hope was a program held at the clinic in December after I had the news that the graft was slipping and before Christmas. Patients and clinic staff had the opportunity to paint a ceramic tile with the design of their choice. I was worried I would not be able to go to Chicago for Christmas; the BMT team was pulling out all the stops to make sure I would. On the one hand I appreciated their efforts, but this fella at the conference table in my head was shouting "It's because this is your last hurrah. You're not going anywhere else after this."

So I got him shut up for a bit, and boldly painted a globe with a distorted map on it. An oversized Italy and Florida. Big black dots for Captiva Island, Chicago, Florence and Rome. I wrote "the world at my feet" and added some ruby slippers at the bottom. Mom gave me a pink Life is Good hat with a globe on it and when she handed it to me to cover my bald head, she said "Cathi, you have the world at your feet." I remember nurse Maurya sitting with me while I painted. As we walked back upstairs, I confided my fear that this was my last trip and she looked at me with complete sincerity and said "oh no. This is not your last trip. You're going to be going to Italy and to Florida." I believed her. So here is a pic of the entire board and of my little tile.

I marvelled this afternoon at the difference in me between when I painted that tile and when I spotted it today. I have been to Chicago three times! And I have a trip to Italy planned in October. I am one of the lucky ones.

Abby did the bone marrow biopsy and answered all my questions. The results of the liver biopsy showed nothing more sinister than GVHD and too much iron. I will find out later next steps for the liver. She counseled me to eat more protein, not because the number is low, but because I'm still having trouble with my feet swelling. So I reckon I will add a protein shake to the daily regimen. My hemoglobin was 11.8 today, something of a relief to me. It has dropped the last couple of times and that makes me nervous. My platelets were still 73 which Abby was happy about. She laughed and commented that other hospital departments went nuts when platelets were that low but bone marrow doesn't worry til they are much lower!

The liver counts have improved a little since they increased the dose of the medicine I'm taking for it. Other counts are beginning to hover around normal. I am very lucky.

Nurse Jenny in the biopsy room said I might not see her for a year now! I can't imagine going a whole year without a bone marrow biopsy. But Jenny and I will keep in touch via Facebook. Nurse Lauren drew my blood today and announced she is getting married in 10 days. Lauren was on the night staff at the hospital when I first got sick. She took care of me as I was getting very sick, running high fevers, and needing all kinds of care all night long. I ran into her often throughout my recovery but it seemed like every time I asked about a beau, she had just had her heart broken. I quit asking--I just hated to bring it up. So this was great news to hear, though I'm sure my son, Mark, will feel just a twinge. He thought Lauren was "hot."

So this day has given me many reasons to be grateful. I have pains and I am still weak, but I am getting better every day. I have lovely curly hair that I am enjoying. They tell me the curl won't last forever--just a couple of years. I went to a couple of social engagements over the long weekend and enjoyed myself, but I lasted for the duration of the parties. Today is Walt's birthday and I am so grateful that I have such a generous brother. That my entire family is so generous. It was very soothing when I was very ill, to know that my family was all pulling together for me.

And did I mention that my hairless days are over? I must shave my legs every day to wear shorts!
~Cathi

One year anniversary

2010-06-29T21:39:00.003-05:00

Today is one year from the date of my transplant. I feel a sense of peace writing that, living it, believing it.

I'm living at home, by myself again. I'm working. I'm travelling and planning. I'm doing things to my house. Sewing. Seeing friends, eating out, cooking in. All wonderful things.

The liver biopsy today was predictable with no complications. It was an interesting morning though. I spent a full two hours going from one part of the hospital to another doing the preparatory things. My letter with instructions to not eat after midnight and show up at 7:15 said to go to radiology first then admitting. Radiology said go to admitting first. Radiology did a sonogram of my liver and marked the spot between my ribs to stick the needle. The radiologist was a pleasant fellow who said my liver looked pretty good.

Then to the GI clinic, but back to the lab. A very young fellow was learning his way around the lab and I discovered he is a recent graduate of K-State when my arm bled and threatened to soil my purple sweatshirt. Likewise his mentor was a wildcat. A refreshing twist in a very blue and red hospital.

Finally to the GI clinic. Dr. Gilroy, who is Australian, had me sign the consent form and we chatted a bit. I told him Dr. Abhyankar said he always calls him "matey" on the phone. Dr. Gilroy replied "these guys confuse me with a sailor. I call him MATE." I must report that he is as good at the liver biopsy as he said he was. I was given sedation that put me to sleep after I was on the way back to the recovery room. It was over that fast. I contributed blood and tissue to a study. The nurse working on the study collection said they had only about 15 patients like me so it would be a real help to have my contribution. I was so willing...they have no idea how willing I am to help. The actual biopsy is done with a long hollow needle he inserts into my liver and removes a very small cylinder of tissue.

Fifteen patients "like me" is a clue about my situation as a transplant patient at KU. The nurses tell me things like "if there was a prize for the most weird treatments you would get it." And report the times the doctors sent me to the hospital from the clinic and did not feel good about it. We were all holding our breath about this last transplant. So many things were up in the air. I could not have a full transplant because my lungs were fragile and my liver was inflamed. I could not have an unrelated donor transplant because of the lungs. All the things the doctors had planned to do to make the second transplant work, they could not do.

But as I said last night, they are nothing if not creative. I received a different chemo as part of the mini-transplant. It was horrid but it worked. And they poured every single stem cell they got from Walt into me instead of just the amount called for according to my weight.

It was a very long haul, and very difficult. The few days I expected to be in the hospital turned into 7 weeks. I didn't eat for much of that time. The lungs were up and down. The acute graft v. host was extreme. (Acute refers to gvhd symptoms in the first 3 months after the transplant.)

Ah, but here I am a year later. Thriving.
I am glad to have the liver biopsy out of the way.

Walt came over tonight and brought me a blooming potted plant. I'm thrilled to have something blooming for my house. I feel pretty good and expect to go home tomorrow after spending the night with Mom & Dad.

Conor and Annie will be Oklahoma the next few days showing off their babies. I will miss that opportunity to see them, but this biopsy was already postponed from an appointment during my May trip to Chicago. I will see them soon.

Thanks to all of you who read the blog. To those of you who comment and those of you who don't. The blog is good for me. I think when I post regularly, I don't struggle with the blues. The blog is not going away. There might be more daily trivia included but this recovery is still a work in progress so I will continue to update. If you have an opinion, I welcome it. Here or via email.

My canoe is steady in mid-stream heading down river. I'm thinking of things like sun defense and balance so this tells me I'm getting better. The visual world in my head is broadening.

~Cathi

1 year minus 1 day

2010-06-28T20:31:00.009-05:00

Tomorrow will be one year from my transplant. It will also be my liver biopsy so I may not be able to post. I also may not be able to eat much so I went out and celebrated today. I bought 2 new charms for my bracelet: a 4 leaf clover and a World Health charm. I think that about sums it up, good health and good luck. Mom & Dad and I went out and ate steaks and enjoyed a glass of wine. Topped off by DQ Blizzards for me and Dad. (Really we're rednecks! Who else goes from a fine steakhouse to the Dairy Queen?) Here's a picture that is kind of dark, but still good. I will remark here how lucky I am to have had such attentive, careful and loving caregivers.

The last couple of weeks have been up and down which I think is what you call normal. I have been feeling very rebellious about the pills. I am really sick and tired of the pills. I actually threw them in the trash one night. It's difficult to swallow. There are a dozen or so to take. 4 are enormous and 2 more are awkward. (I know...some cheese to go with that whine?) Anyway about 3 days of skipping pills and I started having pains I hadn't had in a long while. That is some incentive to get back on the pill regimen. I dread it every time. I procrastinate. I take them in the morning last thing before I leave the house. I take them at night last thing before I go to bed. In the meantime, I fret about it while I'm procrastinating. I think I could write a sitcom. Or at least a few short pages of a neurotic performance. One time a pill stuck in my throat and I could not get it down. My mouth began to taste like old fish. I think this is the folic acid pill to make my feet tingle less. Which it does, but I really hate the taste of old fish. Ah well. It's not likely to change for a while. And I sure don't have much trouble taking a pain pill or a sleeping pill. So it's as much neurology as physiology.

Other notes about the current state of my body. My nails are all breaking off, but still growing as if they've been fertilized. I need a pedicure every 3 weeks instead of every 6. I need a pedicure because I cannot comfortably reach my toes to do a number on them. In fact putting my socks on in the morning is an acrobatic performance. Perhaps not as ridiculous looking as attempting to get my britches off at night, but all amusing. I think the effects of the cortizone cream must be cumulative because my skin stops hurting and being very sensitive so I stop using the cream. Pretty soon, it hurts again. A fellow survivor told me that she wraps up in cling wrap at night, or has her husband wrap her. Slather with cortizone cream and wind up the cling wrap. The mere thought of wrapping myself makes me cringe with pain, but I may spend a few nights at Mom & Dad's to try this bit of therapy.

I have mild sores in my mouth which is a little bit dry. Inside each cheek I have very prominent ridges representing graft v. host. I keep a bottle of salt water by the sink and every time I wash my hands I rinse my mouth. This helps. Some things don't taste good like they did before I got sick. Wine and scotch for example. Other things that I wasn't crazy about really hit the spot, such as wheat beer. I think the mouth problems are related to the pills because during my rebellion things began to taste really good. And the dryness was less noticeable. Mere procrastination does not bring on this bit of relief; it must be a full fledged rebellion.

Mark came to visit for a weekend and put up shelves for me. I now have a mantel on my fireplace. I live in a split level house built in 1967 when "The Den" was king. The really nice houses had a den with wood paneling, rough hewn
ceiling beams and a big brick fireplace hulking over it all. Cozy I think was the word. The fireplace in my house, moreover, was placed square with the front door which blows any hope of symmetry in the room it illuminates. A couple of years ago Mark tore out the bricks and we put up wallboard and sconces and installed an electric fire. I love the electric fire--two punches on the remote and I have fire and heat. One more punch equals more heat. It looks real enough that people come in the front door and worry about the embers burning. Just after I got sick in 2008 my niece and her husband tiled the surround and now I have a mantel. Herewith the before and after for your viewing pleasure. Other home improvement tasks include replacing a light fixture by myself standing on a short ladder with my hands and arms up over my head. Take that lady physical therapist!

I continue to see friends and work. I work at least two hours every day. They are not all billable but they are productive. I am sharpening my mind, honing my troubleshooting skills and I am happy, well thrilled, that messing about with computers still charges my battery. I have a couple new customers, very small, but it gets the juices running and that's what I want. I look forward to being able to make a living again. Work long hours and late ones when called for.

Friday I went to eat Indian for the first time since I got well. I used to love a good curry but it did not hit the spot Friday. I switched to less spicy foods for lunch, but the damage was done. My belly suffered and my weekend social plans all went down the tube. Or perhaps I caught a mild bug somewhere even though I've had every kind of flu shot and immunization known to my doctors.

I saw Dr. Aljitawi last week. My counts are good though the platelets continue to drop. As with the other providers he wasn't worried about this. (The guy doing the liver biopsy tomorrow might worry but that remains to be seen.) Aljitawi said that if the liver biopsy shows what they expect, that the problem in my liver is caused by too much iron from too many transfusions, then I will start giving blood. Every two weeks or so they will drain a unit of blood until the iron returns to an acceptable level. I assume this will also drop my hemoglobin so I'm curious to see how long my body takes to rebuild those hemoglobin levels. My ferritin level was 3793 a month or so ago, and normal is 10-200. The human body simply cannot process the abundance of iron that comes with many, many transfusions. The iron builds up in the liver and causes problems. Without action, the iron does not return to normal levels. It requires intervention to reduce the count.

I listen to providers talk about options and next steps and I am struck by how fortunate I am to have this team of doctors and nurses who are creative and responsive. What an interesting field to be working in! I remember when I was in the hospital in February, 2009 with pneumonia and just could not catch a break. Dr. Abhyankar came in one day and said "we're running out of things to try." The next day Dr. McGuirk came in and the team had had a meeting and tossed about ideas and one stood out. They called other transplant centers who agreed it was worth a try and it worked! My poor old marrow began coughing up enough white cells to beat up the pneumonia and get me out of the hospital.

So it is a process of action and reaction. We are reaching the point in my recovery where we can be a little bit proactive, but most steps are still based on today's test results. Next Tuesday, July 6th, I have the "1 year workup." This consists of a pulmonary function test, drawing about a quart of blood (well it's 30 tubes or so,) and a bone marrow biopsy. I have an appointment to get the results on July 19th. I am still visiting the clinic every 2 weeks and Dr. Aljitawi mentioned extending it to 3 weeks, but he didn't do it. As a side note, there is a new phlebotomist at the clinic. His name is Carlos and he kneels to take my blood. I love him because he is the most painless sticker I've known. Or perhaps because he is adorable and kneeling before me.

Step by step. Lots of gratitude. Lots of wonder. and last but not least, lots of fun!

~Cathi

Back to Gilwell

2010-06-10T20:18:00.009-05:00

Last Sunday I had dinner with my Wood Badge Patrol. The Owl patrol from C34-04. Six of the seven of us were able to get together. We have stayed in touch and gathered for dinner periodically. They all sent encouraging messages, called or visited while I was sick. The fireman, Steve, visited a couple of times in ICU. His first visit is one of the few things I remember from that time frame. I don't remember the second visit at all.

Anyway here we are. All checking in. Who is doing what in scouts? How is your troop, crew, pack? When are you going to camp and where? New district positions? Kids getting married? graduating from college? Life goes on. From left to right: John, Chris, Mark, AJ, me, Steve. Another Mark wasn't able to be there.

Wood Badge is advanced adult leader training for boy scouts. Participants in the course are divided into patrols like a large troop and the camp is named "Gilwell." Gillwell is the first boy scout camp in the world, located in England near Chingford, a short train ride from London. A friend gave it to Lord Baden-Powell and it is still used as a camp today. I have visited there several times. Ironically, I've never been to Baden-Powell's house that is right in London. Anyway, "Back to Gilwell" is the camp song, a simple ditty with clapping and hand movements that will drive you nuts. Unless of course, you're a wood badger.

I went to yoga today. It felt wonderful. I have not had a bad day this week. I am really working with my shoulders, arms and fingers, to get more flexibility in them. My hips and legs seem to be pretty good. Of course they could use a little more stretch, but my arms and hands need to get to zero. I have lost ground with them. I missed PT tuesday because I couldn't find a parking place. 20 minutes in the parking garage is 12 minutes more than I allow and there weren't any spots to be found. I was in a queue of about 12 cars who drove in and drove out.

In any case I have decided to not go to PT for a while and work with the yoga. Add a couple more classes and do some serious work here at home. I have the exercises and equipment from the PT department so I know what to do. And this way they won't have to think of new things for me.

I saw Dr. Ganguly at the clinic today. He is happy with my counts even though the platelets have dropped to 108. I have to pause and laugh. I'm fretting about 108. For 18 months my platelets were in the 6-15 range.

He says the drop is caused by graft vs. host. I am anxious for my hg to reach "normal," that is 12.0, but it stubbornly stays in the 11s.

I asked him about this graft vs. host. GVHD. What's the big picture here? Julie focused on the skin, Dr. Abhyankar on the inflammation, Abby on the pain. I need a big picture. So the big picture is: this is good. They would describe my symptoms as limited. Some thickening of the skin, some inflammation, some restricted movement. People who have limited GVHD don't get the disease again. (For this I am grateful.)

I have scar tissue everywhere. In my joints, in my organs, everywhere. I asked him if I should treat it like arthritis? He nodded. I said rheumatoid arthritis, he made a face and said "no, no, no, no. Old lady arthritis." ha ha. It will last for the forseeable future. Can it kill me? "NO." That was a good answer.

Things to do include all that I am doing. Cortizone cream, Aleve, Tylenol, Cellcept. Cellcept is an immune suppressant and I guess by suppressing the immune system it stifles the scar tissue factory or something. In any case I will keep taking it for a while.
Then they might order photo-apheresis. During this procedure my blood circulates through irradiation that "numbs" it (Ganguly's word.) This makes it settle down and quit making scar tissue. "Simmer down..." The photo-apheresis involves inserting a port in my chest that is under my skin. The procedure happens twice a week for several weeks, then gradually tapers off over a 6 month period. I'm hoping it is 10 days between treatments by the time I go to Italy. Or that the team does not order it for me.

Whether or not we do it depends on how much flexibility I can regain in my shoulders, wrists and fingers over the next month or so. Paraffin dips, stretches, pullies, spa baths. Lotsa energy going into this.

Meanwhile stay busy is my mantra. Housekeeping, working, errands. There is always something to do. The more active I am the better I feel. I am still catching up with friends I haven't seen since I was sick.
~Cathi

Travel Tales

2010-06-05T08:26:00.012-05:00

I have put off posting because I wanted to put up pictures and because every time I get ready to post something else happens. I'm feeling pretty good overall and getting my mojo back after a beating from the physical therapist.

I went to Washington DC for a wedding and to visit my cousin Nancy. I had a fantastic trip. The day of the wedding, in old town Alexandria at George Washington's River Farm was perfect in every way. For me it was a pain free day. I wore my dress shoes for hours and even danced. I danced as much as I wanted. I drank alcohol. As much as I wanted, which wasn't very much actually. The wedding was relatively small, permitting conversation with just about everyone there which was wonderful. I had a gem of a conversation with a woman whose husband has had serious illness over the past 18 months but he was there, walking with a cane. We talked about the experience of dropping out of one's life suddenly, the fears, and how this kind of illness changes you. That little chat made the experience of the wedding even more precious.

Here's a pic of old friends who worked together at the Polsinelli law firm. Sally, on the far right, is the mother of the groom.

Nancy, a most wonderful host, collected me at the airport and we went directly to a salon for pedicures. After the wedding we had massages. Sunday we walked up to the capitol for the concert. Monday we went to a barbq and ate crabs. It's crab season back there and I had a lot of fun cracking them and eating them. A barbaric ritual that would have turned my doctors inside out had I tried to do it while my counts were still recovering. We visited the FDR Memorial which I had not seen and I liked it. This photo is in the 3rd term section, the war years. There are granite slabs every which way, both inside and outside the fountain. Very evocative of the disrupted countryside from bombs. Aside from these little adventures, we had fun walking the dog, walking to dinner, chatting. I'm a big fan of her beau who brought the Washington Post over to read every day.

On the way home as I was boarding the airplane the fellow in front of me dropped his sunglasses. Yours truly was able to bend down and pick them up and hand them back to him. Woo hoo! That is a lot of progress. Bending down to pick something up sometimes hurts so much that I don't bother. I really felt on top of the world as I made the trip home. Optimistic and confident and ready to do battle with my body.

I worked several hours each Wednesday and Thursday, then went to physical therapy Thursday afternoon. Thursday was not a good day. Everything hurt and nothing was moving very well. The PT insisted that we measure that day. I told her it was not a good day to measure because I was so sore and that tomorrow would be better. I guess she didn't believe me. She was mad because I hadn't been in for 3 weeks. And of course she was mad because the flexion (her term) in my arms and wrists was worse than when I started. She refused to count my last visit when we discovered that my shoulders were 30 degrees more flexible. She just wanted to be mean I guess. She must have been having a bad day too.

Anyway, that totally took the piss out of me. That the measurements were bad. That she didn't believe me when I said it was just a bad day. I cried and cried and cried. I fumed. I threatened to cancel the rest of the PT appointments. When I first went in there, she didn't understand GVHD and didn't understand what I explained to her. Now she has another patient so she's an expert. Said patient is making wonderful progress so obviously I am not doing my work at home. I know the other patient. I know her symptoms are about half what mine are. And I don't think the PT is now an expert.

She is a gov't employee, floating her gravy boat to retirement. She doesn't care about the individual, just her own numbers. Pfffft. I didn't cancel the appointments because the next two are with a different therapist. Nobody in there is very friendly, but maybe this one will be less overbearing. I had to think about where my canoe was. Beached. While I pouted. Took some mind work to get it back out in the stream.

Meanwhile yesterday was a good day. Today is a good day. I want to take my flat hand and smack that teutonic witch up the side of the head!

Mom had her last radiation on Thursday so we all met on the Plaza for lunch to celebrate. It is a wonderful feeling to beat cancer. To finish treatments.

I miss my friends at the clinic terribly but I am so happy being able to resume my life. The restaurant, Brio, was very accommodating and celebratory as well. Gave us complementary appetizer and then plates so we could eat BabyCakes for dessert.

When I returned home from Chicago I felt a little bit like when I used to travel for work. Get home, pay some bills, do the laundry, pack and leave again. My next door neighbor, Jack, has sent his grandson over to mow my yard twice. There is a special place for Jack in my heart. He is a champ. My neighbors across the street, Zach & Jen, have worked overtime collecting papers and mail for me. Mom & Dad have checked the post office box and made the bank deposits. All these things and I don't have dogs anymore!

I really missed Hayward Wednesday morning this week. It was raining hard when I got up. So hard that I just left the paper in the yard. HaHa. It's still not time for a dog or for gardening. My garden needs some serious work.

So there you go. My counts are holding steady. Hg was 11.8 a mere .4 away from normal, last week. The pain management is getting better. I have about one bad day a week, but I used to have about one good day a week so this is huge progress. I need to lose 5 pounds! gasp! Wally Time is over for me. I must pay attention to what I eat, and drink. Really, I don't drink alcohol much. Just occasionally.

We are scheduling the one year workup for July 6th because I have a liver biopsy scheduled for June 29th. THE DAY. One year from the date of my transplant. I'm thinking about a celebration.
~Cathi

Low pain = high gratitude

2010-05-20T20:44:00.002-05:00

Thursday night in Chicago. I confess to being very very tired. It's a happy tired, but I'm tired. I was spot on to shorten my stay from 2 weeks to 1 week.

I've not had a painful day since Tuesday. (Much gratitude.) Wednesday in fact, I felt terrific and everything was moving pretty good. I went to Starbucks for coffee for me and Annie and a paper, parked on the street, and did the whisk into the car with 2 hot coffees, my purse and a paper in between fast moving vehicles on a narrow street without a twinge. I was amazed when I was behind the wheel. Where's the easy button? "That was easy."

Today I'm a little stiff but not sore. I do think that I get tired from the extra energy it takes to move this stiff body around. I get up around 7 or 7:30 as Conor is leaving and after the kids are fed and dressed. I go to bed when Harrison heads for his bath around 7:30 in the evening. I am usually asleep by 9 which is in 7 minutes. ha ha.

We walked to Julius Meinl this morning, Annie and I and the two kids. The only trick was maneuvering that long double stroller with one hand, since the other hand was carrying my hot cup of coffee and the sidewalks are so uneven that the coffee spills out of the cup holder on the stroller. This afternoon we went to the park and Harrison spent nearly the entire time in the swing. Annie chatted with another young mother who was there with her mother and young daughter and in utero baby boy. I think it is lovely to live in this neighborhood full of similar families.

I had to look up the spelling of maneuver since I no longer spell as reliably as I used to. Dictionary.com showed almost 18 million searches today. Apparently I am not alone. I think sometimes it's easier to look it up than to retrieve it from my overcrowded brain. The techno age impacts all of us.

I have taken loads of pictures of these babies. Ella changes by the day. When I arrived Sunday and picked her up my first remark was "Oh! her eyes are so yellow!" I was really surprised at how yellow they were even though I knew she had the special bili lights at home. But today it's hardly noticeable. (The bili lights have been gone for a long while.)

Harrison seems to be trying to say Gram. I could have picked something easier to say I guess...for some reason that didn't occur to me when I was choosing a moniker. He says a lot of things and some of them are understandable. He definitely enjoys interacting with other kids and he is definitely frustrated by this new baby sister. I'm pretty sure though, that one of the garbles coming from his mouth is Ella.

I will be ready to lay about when I return to Kansas City. I will have to do some thinking and planning for that trip to Washington DC over Memorial Day.

Ok. It's 9:06; time to roll over and finish this day.
~Cathi

Grandchildren are not over rated

2010-05-18T21:12:00.004-05:00

I’m in Chicago staying with Conor & Annie and their two adorable babies. Harrison is charming and has slowed his pace to his old Gram’s (most of the time) and we’re having a fine time. I love to make him giggle and I love to see what he does next.

Today after a long walk in the car, he parked it and polished it. That’s what this photo is…HB polishing the Cozy Coupe. For the first part of our walk he pushed the car—a little faster than Gram wanted to walk in fact. Then at some point he opted to ride so stopped the car, opened the little door and got in. I love it.

My body hurt terribly today but kids are distracting. The long walk was soothing and I simply ordered supper in rather than cook. Harrison and I also spent some time in the back yard tidying the garage and playing in the sand table.

Now Ella. There’s nothing more grounding than cuddling a newborn. They are totally dependent. They don’t ask for much. And it’s the most important thing in the world when you’re doing it. I remember mothering newborns being a time of wonderful peace. No big decisions to make because the most important thing was that baby. Everything else can wait. Ella is a contented baby, quiet but wide-eyed when she’s awake. Annie is a wonderful Mom, and generous. She is obviously crazy about her children—my favorite kind of mom. We all love our children I think, but some of us are lucky to have parents who genuinely like us and enjoy being a parent. That would be Conor and Annie. Here’s Ella having a few minutes on her tummy this morning.

I’m happy to report that I made the drive up with Carla with no problems. I have to say the mini-van is much more comfortable for a long road trip than the car we took to Cincinnati (though the car was ever so fine, Jason.) We arrived at our hotel and then did an hour at IKEA before we crashed Saturday night. Sunday I spent 4 hours shopping at IKEA before loading up and driving into Chicago to Conor & Annie’s. Then we all hiked half a mile or so to Lincoln Square for supper. We put the kids in the stroller and set off. I love this kind of city living. It’s enviable to be able to walk like that. On the way home, the neighbors were outside with their kids so we stopped and had a chat, a nice long visit. I was pleased with my stamina that day.

It’s a different kind of activity here on a daily basis. Inside, outside, upstairs, downstairs. Sit down, stand up. I’m enjoying it and it works different parts of my body. I’m taking twice as much Cellcept after my clinic visit last week but so far I haven’t noticed a difference in how I feel nor the swelling. The swelling is just willy-nilly. Not so much after the long day on my feet Sunday, but little baseballs in my ankles tonight after I wasn't on my feet that much. I’m probably nuts, but I keep hoping that more walking will eventually make the swelling diminish. Same with the pain, it just comes and goes unpredictably. Thankfully it comes less often these days. And also being able to take Aleve is a nice respite. Wish I could take it twice a day!

Meanwhile, distraction is fine pain relief.

~Cathi

It's all good news

2010-05-13T19:55:00.000-05:00

I had lunch this week with a friend I haven't heard from much during my illness. The friend talked about how difficult it was to read the blog every day with the constant ups and downs. I admit that when I go back to read it I am amazed that my spirits were as high as they were. Because every time there was hope, there was bad news after that. A lot of ups and downs. I hadn't given much thought to how readers feel.

But it's all good news this week. Monday at the clinic my hg was 11.4. Almost normal, which is 12. My white cells were 8 which is normal and my platelets were 145, normal is 150. The doctor said "you can take Aleve now for pain. You couldn't do this before but you can now." So Aleve once a day and Tylenol once a day.

The physical therapy session on Tuesday ended with a few minutes loosening up my shoulders. The therapist said she thought they were moving more than they had when I first came in. I wanted specifics so she went and got the measuring business and sure enough, each shoulder was moving about 30 degrees more than it had 3 weeks ago. That was enough to get me back for another session!

Saturday I leave for Chicago to be the chief cook and bottle washer for a week. I'm only staying a week though. I decided I'm not ready for 2 weeks of that much activity.

So all good news. I'm doing my exercises. and taking my drugs. At least the pain killers
~Cathi

Dateline: Chicago

2010-05-05T21:07:00.000-05:00

Dateline: Chicago, IL
Ella Catherine Maynard arrived at 7pm Tuesday, May 4, 2010. She weighed a mere 7 pounds 15 ounces and has a little bit of sandy colored hair. Parents are Conor and Annie Maynard and big brother is Harrison Bradley Maynard. Ella has spent her time in the city drinking and sleeping with a few photo ops for interested parties.
EOQ (end of quote)

I am having a fine time in Chicago. Baby Ella is divine and I got to hold her soon after she was born. A tiny bundle of sweet perfection. It is a wonderful experience, heightened by missing Harrison's birth and first year. We (Annie's mother and I) took Harrison to the hospital today to meet Ella. He smiled politely for the camera, but I would have to rate his interest level at about zero. He was happy to see his Mom and Dad, and play around in a new place with lots of curiosities, but Ella didn't seem to be even a blip on the radar. I'm sure that will change when she takes up residence tomorrow.

Harrison is ever so familiar with his Gram these days. He smiles and says "Hi" and runs to see me. He laughs at my jokes (well it seems to me that's why he's laughing,) and blows me kisses. I adore him. I read to him and when I call the horse a cow, he looks at me funny til I call it a horse. Pretty sharp kid.

I have been fortunate to have a series of days with much less pain. I admit I have pushed my limits up here in Chicago, but one needs to do that occasionally just to see where they are. Today I put together the double stroller for the two babies and I'm calling that a PT session. There were only two screws in the thing, but it was brutal turning that screwdriver. Happy to say I won the battle, the screws are in and the stroller is operational.

I will be returning to KC tomorrow and later in May I'll come back up and stay a while to help take care of two babies. Ostensibly. I'm really coming back up to have a string of consecutive days seeing my grandkids.
~Cathi

I am a drama queen

2010-05-01T09:18:00.000-05:00

I have started a couple of updates that I didn't publish. They were whiney and self-pitying and seemed to be excuses for slacking. Drama, drama, drama.

Last night I started talking to myself differently. "Yes it's going to hurt to stand up, but so what? You gotta stand up anyway." After a few hours of this it seemed to be easier to get out of a chair.

This morning I woke up feeling wonderful. Not pain free but seriously pain reduced. I threw the covers off with one swing of my arm without thinking about it. or cringing. Then I walked upright to the bathroom, and my hands were straight under the water. I don't know what changed but I want it to last.

Perhaps the Cellcept has kicked in that I started taking a week or 10 days ago. Dr. Abhyankar said it would take a couple of weeks. I am not changing anything. I am drinking tea this weekend. (Usually I drink tea during the week and coffee on the weekends.)

Thursday's yoga class was torturous and I posted something on FaceBook about Yo! Gah! I got a lot of amusing responses. That's what friends are for. The best one was "sounds like a battle cry. Yo! Gah! Ouch!" haha. Makes me laugh at myself and my silly complaints.

Yes I have a lot of pain but I am not the pain. I can sit in the chair and focus on the pain which makes it bigger and more dramatic. Or I can go on about my life, doing the laundry and fixing computers at the rate I can go. I haven't quite found the wit in this, but today's respite will surely help.
~Cathi

Pruning privileges!

2010-04-26T21:19:00.000-05:00

I had a wonderful, busy weekend and did not feel worn out at any time. I did feel very very sore. Friday I had a meltdown that required a couple of crosswords for recovery. Mindless solving to stop thinking. Meltdowns usually happen for a reason (one hopes!) and provide impetus to act. Action going forward is more pain medication. Pills Pills Pills. Tylenol, which is not so great for a bad liver or ocycodone which is not so great for driving. You will have to ask to find out which one I'm taking, because assuredly I will be taking something. The constant pain was just working on me.

Thursday I saw Dr. Abhyankar, always rewarding. I can't think of the exact word. I trust him, he has lots of ideas and he is honest. (Ironically, he is the doctor who told me twice in the hospital "we're running out of things to try.") It's just a big YES! when he walks into the room. We talked about the joint pain and restrictions and he recommended Cellcept which is an immune suppressant. He said we could also try Revlimid before we resort to Prednisone. I had 2 bottles of Cellcept left in my pharmacy so I fished them out and started taking them. Expecting to feel results in a couple of weeks.

He granted rights to prune and collect debris in the garden. "Just wear gloves!" So I bought some latex dipped gloves to wear over my latex gloves from the clinic and I've been out twice. I can deadhead too. This is very cool. I feel like I belong in the neighborhood now.

No big dental work, like replacing a 20 year old crown, til after the 1 year mark...coming up soon. Two more months. About enough time to plan a very fine party.

I went to a very fine party Saturday night, an Irish Catholic wedding. Nobody remembered me! I had to announce myself to everyone. I do look different but golly! These are people I partied with 3-4 times a year but I haven't seen them for a couple of years. Guess that's just how it goes. Didn't stop me from enjoying myself.

Dr. Abhyankar said the pain I'm having is inflammation not only in the joints but also in the muscles. This would explain why when the physical therapist had me do a stretch and asked "can you feel it here?" I was always feeling it "there."

I have not had the liver biopsy yet, nor have I had the pulmonary function test (see first paragraph above.) I don't even have the full results of my labs from Thursday. I am hoping the labs will show low Vitamin D and taking prescription vitamin D will be part of the pain relief regimen.

Since I am no longer on the critical list, I really have to be my own advocate. The clinic staff is focused on the more seriously ill, as they should be. It's up to me to keep reminding them what I need. Mondays are tough days anyway, so no answers today.

Baby Ella is scheduled to arrive next week, May 4th. I'm planning to be in Chicago for that event. Annie's mom is going to take the Harrison duty so I can be in the waiting room at the hospital. How wonderful is that? She has much more grandma experience than I so I will be watching her with HB and taking notes next week. Annie has provided us with a lengthy list of dos and don'ts and howtos. I'm very happy to have this list, but it is a bit amusing in its thoroughness. Her dad is having a fine time with it. I am just so excited to be able to be there when Ella is born and be able to hold her in the first few hours. I tear up every time I think about it.

Mom is starting her second week of radiation and is doing fine. She has cancelled a trip to California to see her grandson perform in a school musical which is near the end of the radiation schedule. She is hugely disappointed. I doubt if anyone she tells that story to understands more than I how she feels. I appreciate the basics of life in a different way than I did before my long isolation. Perhaps next year we will go together to watch the boy in the musical.
~Cathi

The system is down.

2010-04-22T09:54:00.001-05:00

Yesterday I reported to the hospital for my Pulmonary Function test, prepared to gee whiz the techs and my doctors once again. Alas, they couldn't do the test because the computers were down. Hospital wide. I rescheduled for Friday and trundled to the Starbucks to wait for my Physical Therapy appointment.

I reported to PT and while I was sitting at the desk for the records person, a young fellow with completely tatooed arms, an earring, tight jeans and a presentable t-shirt (e.g. GEEK) told her that he had to take over her computer for a few minutes, it would back her completely out of what she was doing and he had to do it right now. "I have 4000 computers to touch so I have to do it right now." hahaha. Fortunately the computer next door opened up so he worked on that one instead.

I overheard him telling that he actually worked for the University in Lawrence, but that all IT types had been called to the hospital because they had 4,000 computers that had to be touched to restore full functioning. Wowser. This is when I would be creating a new policy to roll whatever that was out automatically. I cannot imagine what bug they were dealing with that required individual hands on for 4000 computers! This would be "the system is down." (The tagline for my company is "Your System is Up!")

Physical therapy was interesting. I was a little intimidated by the therapist I was assigned as she was a full 6" taller than me, and all of it was legs. I didn't want that kind of traction stretching my body parts. The assessment showed just what I'm experiencing--more tightness in the shoulders, arms and hands than in my legs and lower body. I have a new sheet of exercises, stretches really. And they all hurt. Do each stretch for 20-30 seconds and repeat 10-20 times. So I can get to 20 seconds, and I can repeat it once. I'm going to need a large bottle of Myers dark rum to put in my coke to do an entire set of reps.

It takes 15-20 seconds of stretching for the muscle to remember the stretch. Ugh. Ouch.
She also suggested a paraffin bath for my hands. Which means I have to locate the thing in my garage--probably have to stretch to reach up and get it off a shelf. Then clean it up. The general recollection is that the last time it was used, a nameless someone poured the paraffin out...over the sides of the reservoir. I'm thinking this will at least keep me busy for a while.

Today I see a Nurse Practitioner at the clinic and they are going to check my vitamin D levels in the blood work. I have quite a list of questions to ask. I'm still trying to work out where the limits are in the gardening. Like can I deadhead? Prune? Pick produce and flowers? I have looked up a little bit about this and the best I can tell is that even though my white count is normal, my immune system is still weakened. There are a couple of specific toxins in dirt that might cause an infection. But it might be that I can wear gloves and pick stuff up off the top of the dirt as long as I don't disturb it. I am picking around to find something that I can do outside--I'm just going nuts not being able to do anything.

I have been busy getting computers and networks up and running without glitches for my friend, Brant Tidwell. Brant had a seizure a few weeks ago and he has something in his brain that needs to come out. I have a visualization of floating downstream in a canoe that I use, always checking to see if I'm paddling against the flow or with it. Right now I feel like I am holding on to a root at the side of the river waiting for Brant to get his canoe turned around to go with me. That's how I feel, not how Brant feels. I think he has his canoe pointed in the right direction. I'm saying lots of prayers for Brant and Lucy and the doctors they are seeing. And holding my breath.

Now, on to the day with the crossword puzzle and a customer project and the laundry. These are downstream things.
~Cathi

The Lizard Doctor. oops..hepatologist not herpetologist

2010-04-19T20:15:00.002-05:00

I've just returned from a weekend in Cowley County. I had a great time at the wedding Saturday (Kayla Biddle, Jess's daughter. Jess is Mary & Raymond's youngest son) and it was fun to see extended family at a non-funeral event. Sunday I drove to Wichita for a satisfying visit with Aunt Janet, my godmother. The new wedding clothes looked good and I felt wonderful and fortunate and grateful.

Aunt Janet, cousin Claudine and Aunt Cathy were terrific supporters all during my illness and recovery. They sent lots of cards and lots of good wishes. Aunt Janet kept up with the blog and often called Claudine and Aunt Karen to read them the updates. Janet has 5 kids who all kept up and sent good wishes; Cathy has 5 kids who kept up. I am just very fortunate to have such a large family and folks who were not afraid to pray and talk to each other and create lots of positive vibes for me. Now I have seen the oldest generation and I must start on the next generation, mine. Heaven forbid! there are two generations younger than me; life comes at ya fast.

I stayed with friends in Arkansas City, long time friends; and their kids and grandkid came to visit. It is like bookends to my illness. The last thing I did before I went in the hospital was go to Ark City to help with Andy and Melissa's wedding. And now I've visited them with their 1 year old baby. Mark joined us this weekend too.

I survived the travel in good shape though the drive home today was very long. My legs and feet are swollen and they become sensitive to the touch. Jeans hurt. I couldn't wait to get home and put on some knit pants. To complicate the drive home my bladder went into high gear and I had to stop often to empty. It reminded me of travelling with my Granny who called gas stations "emptying stations." But I am home and I am fine. Not worn out despite the aches and pains.

The visit with the liver doctor Friday was interesting. Peggy went with me and brought along a pad to take notes. The doctor came into the room and started talking like a machine gun with an Australian accent. I sorted out the accent fairly easily but his upper lip didn't move and he kept looking down at his paper. He didn't say hello or shake my hand or get introduced to Peggy. His nurse slipped in and had an equally brusque manner. However, the doc had an amusing sense of humor and he did look at me after I pointed out my hearing aids to him. Short excerpts:

"I know your liver isn't failing because your feet swell up and your albumin goes up and your albumin is fine."
"I need to do a biopsy and I'm really good at them I've been doing them for years in Nebraska and here and I know what I'm doing and folks hardly know they've been stuck and I hate that because I want them to recognize how painless it is and how good I am at it and the risks are 1 in 1000 of bleeding and 1 in 10000 of death and what do you think?"

My response. Silence. What does one say after that? So I got some more information out of him about why a biopsy--to see who is warring that is causing the enzymes to go up--and what happens after that.

He says in the liver the graft can fight against the donor, or it can actually be fighting the disease--leukemia or MDS (myelodysplasia.) And a biopsy will identify the opponent by the type of scar tissue in the ducts in the liver. Then I will take the appropriate drugs to assist my liver.

So I agreed to the biopsy and he exited after admonishing Peggy to "take good care of her." Peggy was as shell shocked as I was but we feel we got good information ultimately. The doctor also had high praise for the BMT team and remarked that not only were they terrific oncology/transplant doctors, they all had specialties in other areas. Ganguly is a gastroenterologist (like the liver doctor.) Who woulda guessed?

On the way to the lab Peggy remarked that it appeared he and his nurse thought we were partners, in the bedroom sense of the word. I didn't give that much thought "whatever" but then I went to the restroom and noticed my very short hair in the mirror. I had a good laugh--one could be forgiven for thinking we were partners.

Whatever!
~Cathi

"On the go" (feet below the knees)

2010-04-13T16:49:00.001-05:00

Today is the second day in a row that I have worked. Usually I try to work, as in leave the house and see customers, only one day a week. I also got a haircut today and had lunch with a friend. But I have been on the go since about 9. On the go in my case refers to any posture where the feet are below the knees. I've been home about 15 minutes and I am now on the couch with my feet elevated.

I am not tired. But my feet are uncomfortable. My ankles look like little softballs sitting on top of my feet. My knees are big round humps in the middle of my legs and the rest of my legs are bigger than regular size. The bottoms of my feet tingle, but even that is not unbearable. They ache where they are swollen. And the solution is to elevate them.

It's very frustrating.

I would have liked to stop by the grocery store and pick up a rib of celery to make a waldorf salad. I would have liked to collect the mail from the PO box. I still need to go to the jewelry store and buy a longer bracelet for my charms to accommodate my larger arms. And right now I would like to be sitting in my office dealing with the piles of paper, working on a sick computer, researching and just doing business.

But I just need to stop and get my feet up. They won't recover completely until morning, if then. I don't have much scheduled for tomorrow so I'll be able to take it easy. Perhaps I will organize some way to put my feet up comfortably in the office.

When I sit down and put my feet up, my legs get stiff. I put a pillow under my knees, but I still get stiff. There is another part to this joint pain and that is pain when I touch bones near my skin. This includes my knees (kneeling is very difficult and very painful,) my spine when I lean against the back of a chair, my hips when I sit down. This contact pain nearly always subsides after a couple of minutes but it is severe enough to make me stop and think before I lean back.

It is a continuum, sometimes better sometimes worse. Right now as I am writing this, it is worse. But it is not the worst ever. When it hurts the worst ever I have that deep jetted tub to fall into.

I have only one pair of shoes that I can wear and be on the go (see paragraph 1) for this long. And they are looking pretty shabby. Now that I have cute little flats to wear to the upcoming weddings I need to invest in some comfortable shoes to wear for walking, maybe some dark colored ones since the one good pair is red. Hahaha.

I haven't been able to work out that my feet suffer more when I eat more or less chocolate, but I do know that plenty of water usually nets out on the plus side. Today I drank 3 12 oz bottles, just not enough perhaps. I will keep the water glass topped off this afternoon.

Other news. I had lunch at Chez Elle, http://www.chezellekc.com/, and it was terrific. A genuine creperie, right here in Kansas City. I recommend starting with a sweet crepe (Citron with lemon curd and strawberries,) then have a savory if you still have room. The ambiance was magnifique.

Bon appetit!
~Cathi

New/old kind of tired

2010-04-12T20:58:00.000-05:00

I am wore out! Ever so tired. From shopping and gardening and eating out. It's a wonderful kind of tired that I haven't been in ages. I almost feel nostalgic along with the tired.

Janet has been here for a long weekend and our mission was to find clothes for me to wear to THREE weddings this spring! I haven't had a wedding to attend for a long while, much less three in one season. But I am excited about each one of them. Of course I missed two nieces' weddings while I was sick--I still can't believe that happened.

We had success finding a dress. And a stole and a belt and shoes and purse. And jewelry (in my box at home.) And we found some great jeans for me and a WOW outfit for Janet. She bought an awesome bag that we found at another store for less :( then a third store for more :) I guess it all nets out.

We met friends for dinner Friday night at the Macaroni Grill to celebrate normal platelets. I'm still adjusting to that idea. The server comped our dessert, and I got an Italian language lesson in the lady's room. I shall have to eat there often in the coming weeks.

I shall also have to do some serious hiking and stretching to be ready to spend 10 days in Italy in October. The stretching makes me feel better but I don't think I am regaining any range of motion. I asked for a referral to a physical therapist last week at the clinic. The purpose of the PT is to recover range of motion so I hope I hear about that soon. In the meantime, keep up the yoga, the hot baths, lots of rubbing.

Sunday I supervised a little gardening, more things in the ground. I wore my long sleeves and my new broad brimmed hat (another shopping item) but I could not stop myself reaching down to pick things out of the dirt. I went inside and washed up and stayed there. I don't know what I'm going to do. I asked the doctor last week when I will be able to garden. "Is it passage of a certain number of months?" "Is it reaching a certain level in my counts?" His response was "we will tell you when." Almost like Ganguly, but it was Aljitawi. The giggle about that conversation is that his first response to my question about when can I garden was "what kind of gardening do you do?" I was thinking "how many kinds are there?" but I responded "the kind where you plant things in the dirt and amend the soil and pull the weeds. (What else is there?)

I will never, ever be able to spend time in the sun. I must cover up, wear sunscreen that includes a physical blocker (I didn't know they made those that were not zinc based!) and avoid the midday sun. It's all common sense; I haven't been sunburned in a number of years. I admit that when I think about the restrictions at the lake I can make myself feel bad, but the trick is to focus on what I can do. I can do a 10 minute water ski run at 7 in the morning (like I could hold a ski rope for 10 minutes, ha!) I can sit on the dock in the evening, I can go out in the morning and watch the sun rise, I can take after dinner boat rides. I simply have to stay out of the sun and for good measure, away from the water, during the hot midday. I guess it means no more trips to Boundary Waters, but what a great reason to not be able to go on that trip.

The reason is that exposure to the sunlight can incite graft v. host symptoms that can be lethal. I'm unfamiliar with the science on this. I'll be studying up on it while I study the history of Florence and the Medicis.

Ciao baby
~Cathi

Platelets are normal. 1 count to go.

2010-04-08T21:56:00.000-05:00

I went to the clinic yesterday and the blood work results were just fantastic. Platelets 153. That's normal. Over 150 is normal. wow. My platelets haven't been normal for 4-5 years; they were hovering in the 130s for a long while before I got sick.

Hemoglobin 10.2. I was hoping for a big jump and I got it. Normal is 12-15. I'm going to get there. Because red blood cells have such a long life (6 months) this count takes the longest to climb and recover.

White cells 7.8. White cells have been normal for a while but it's nice to see the confirmation on that printout every time.

I saw Dr. Aljitawi and he talked to me about the graft vs. host symptoms that I'm having now. I feel more positive about it--I do not have as much pain as I did but I'll talk about that later. First he said it's good to have this chronic GVHD because it means the graft is really taking hold in my body. So the best omens for a long term graft [with no relapse] are acute GVHD, which I had plenty of, and chronic GVHD, which I have plenty of. He ordered half a dozen tests to quantify the symptoms before my next visit. Then we will take more action at my next visit, or not. More action is likely to be prednisone....sigh. A small dose, but still significant. The goal is to keep the inflammation currently in my joints from becoming scar tissue and more permanent. It's another of those conundrums "the risks of not taking it outweigh the side effects of taking it."

In the meantime I have been nicer to myself, giving my legs plenty of time to heft my body up and down stairs; not being in a hurry to stand up; reaching for things slowly. I really have not had a bad day for almost two weeks now.

Last weekend I rode in the car 10 hours or so to Cincinnati for a lovely Easter with my cousin. I appreciated help getting out of the car when we stopped but I did not have any thoughts of "oh I can't do this anymore," or "I shouldn't have come on this trip." The four of us in the car (my cousin and her husband and son and I) had a fine time. We had lots to talk about and worked crossword puzzles and thought up questions for Jason to look up on the computer with his aircard. We stopped in Vandalia, IL where Lincoln got his political start. We toured the state house, and a small museum that is filled with interesting stuff. I wanted to find the museum more money and space so its collections could be curated better. There were many items from an 1840s-1870s era home, letters from a Civil War soldier home, underground railroad bits. It was all piled in there with its provenance labeled carefully, but it was overwhelming.

My cousin in Cincinnati, Liz, was baptized Saturday evening and I served as her godmother which tickled me pink. She has a wonderful, big house, well set up for company and she and her beau are fantastic cooks. I did get tired by the end of the day, but I woke up in the mornings rested. It was a just a marvelous time. Gratifying that my body withstood the rigors of the road and entertaining to spend time with folks I don't see often enough.

Another count that was a bit better yesterday was the liver enzymes. One of the four has been very high for quite a while--over 500 when 50 is normal. Yesterday it had dropped to 325. I was hoping for that because my legs have not been swelling so much which I first noticed on the road trip. Nevertheless I will visit a lizard specialist next Friday.

Janet is here this weekend from the UK. We're planning some power shopping for wedding wear and "WOW" jeans. And we'll be looking at the map of Italy along with a guidebook or two.

Ciao! bella Italia.
~Cathi

Yoga hurts

2010-04-01T12:14:00.000-05:00

I took a yoga class at Turning Point this morning with Mom. (We are both survivors now, instead of caretaker and survivor.) It was the best class I've found, very basic. But it just hurt like hell and I was mad as heck that I can't do some of the poses. Things that were simple for me before this GVHD are impossible now--like downward dog. Child pose requires so many props one could be forgiven for not recognizing it.

But the instructor was on point and I will go back. The other yoga classes I've taken so far are way advanced and I spend most of my time figuring out how to modify the poses. And I know these things. Or I did know them. The yoga this morning brought tears to my eyes more than once. Because it successfully opened up some of those places that haven't been reached in my recovery. The pain does not make me weep; the pain makes me angry.

There are some other symptoms of this chronic GVHD. I have trouble swallowing. A friend commented last weekend "you eat a lot, just not very much at one time." And that's true. I am constantly nibbling and sipping. Little bites, little sips. Makes a drink last a very long time--a plus I think.

And stuff runs through me a little faster than normal. I reckon this is why I can eat so much and not gain weight. The goal will be to maintain my weight and not lose. Or not lose too much. Frankly I think I could lose about 5# but that's based on the scale not my appearance.

Meanwhile, these house projects beckon. I think I will try picking up the drill today and see if I can handle it with one hand. If I can great; if I can't that will be the next goal.

I am racking up questions about my condition. Making notes on convenient scraps of paper. Hopefully I will have a nice list in my hand when I return to the clinic next week.
~Cathi

Look out Suzy Homemaker

2010-03-30T19:06:00.003-05:00

I have done 3 loads of laundry today. Start to finish. I'm becoming a regular little homemaker. I rarely get more than one load of laundry done in a day because I have to walk up and down the stairs so many times. Of course I am still in my PJs, which I am entitled to do occasionally. I'll be spending some time in that jetted bathtub later on this evening.

I have done some research on my symptoms and it can best be described as scar tissue in the joints. It sneaks up on me; yesterday I realized I cannot straighten my arms. So all day long today I've been grabbing the doorposts and stretching, pulling, working to get them straight. They're not straight, but I've put in the work.

Stretching and yoga definitely relieves the pain. I keep rubbing in the cortizone cream because they told me to. Hopefully all this activity will deter any more freezing up in my joints. This is chronic Graft v. Host Disease as opposed to acute GVHD. I didn't even know there was a difference. One turns up in the first three months and one after that. Chronic GVHD usually disappears after 2-3 years. So my mission is to stay active.

Saturday night I went to a cocktail party that was a "non-shower" for some friends of mine. The bride didn't want to sit and open gifts in front of everyone, and I don't blame her. We enjoyed a nice evening with wonderful hosts and plenty of opportunity to visit with the guests of honor. Peggy and I went shopping to find some appropriate togs for me to wear and here I am. I'm having some fun with my hair these days. It is so curly that my sister asked me if I got a perm in it! My SISTER! ha ha ha. She sees me every week--she just hasn't seen my hair with that much gel in it.

I took a road trip last weekend to Cowley County/Wichita and visited some aunts, uncles, cousins and friends. I'll be going to that neighborhood again the middle of April so I hope to see everyone I missed then. This coming weekend I'm heading to Cinncinati with my cousin. I'm going to be godmother to her daughter and I'm very excited about it. I'm also excited about getting together a box of Easter things to send to Harrison. His little sister is going to be here before I know it!

I'm planning a trip to Italy in October--have I mentioned that? Janet will be meeting me and Robbie will be joining us along with Chris from UK. It's a trip Janet and I pencilled in for Spring, 2009. We've had to wait but we're planning now. My young friend, Hilary, is in Florence right now so I am taking notes from her Facebook posts about things I want to see. So my motto when it hurts to move is "On to Italia!"

~Cathi

A little panic

2010-03-26T11:09:00.000-05:00

Mom is doing great. She is meeting with the doctor today to get the radiation plan. I guess if you have to get cancer it's nice to get one they know how to cure. And for which the treatment is not too abusive.

On the other hand I am into some graft v. host issues that are beginning to scare me. I somehow thought once you're through the transplant, you're good. I vaguely remember warnings about long term GVHD problems but only vaguely.

In my face constantly are pain and restricted movement in my joints. I can neither flatten my hand nor make a fist without a lot of grimacing. The more I move the looser I get but every movement hurts. Every step, every standup-sitdown, every bend over, every reach begets teeth gritting. Some days seem to be worse than others, but it's becoming discouraging. At the clinic Wednesday Julie explained it as a thickening of the tissue, in this case the skin. She classified my situation as 1 on a 1-3 scale. I can regain the flexibility but I will have to work at it. Yoga or Pilates every day. I have a one pound jar of cortizone cream to rub into my joints. Regular massages.

I haven't decided if the good and bad days are real in terms of more or less pain, or if it's a change of attitude. Seems like with K-State's fantastic win last night today would be a good day [in the case of attitude] but today is ultra painful.

Other things to worry about include elevated liver enzymes. Julie ordered a CT-scan of my belly to have a look at my gall bladder. oops! no gall bladder anymore. So McGuirk referred me to a liver specialist. I need to look up that moniker, hepatologist or something. I worry that my liver is thickening and wonder what can be done for that.

The rubbing in my chest every time I draw a deep breath has just been a result of some really bad pneumonia and scarring. But added to the joint pain and liver concerns I worry about that too. Are my lungs afflicted with GVHD? On the up side I don't have any trouble breathing or drawing a deep breath and it doesn't hurt.

Have I survived this incredible journey of the last 18 months to be eaten by GVHD?

I have resisted doing research on this or going back and rereading the warnings from before the transplant. Most of the time I want to work through it in a logical fashion. For example I had already scheduled daily Yoga sessions before Julie prescribed them this week. I have changed around the vitamins I'm taking and added more. I have pretty much stopped taking the Gabapentin for the tingling in my feet.

That will be the first plus here, the tingling in my feet is much much better. It's hardly painful anymore, just annoying. The next plus will be that deep soaking, jetted, bathtub that Walt put in when my bathroom was redone. And that's where I'm going to be for the next half hour.
~Cathi

Mom is A-OK

2010-03-18T21:53:00.000-05:00

Mom had surgery Tuesday to remove the lump in her breast and it went exactly as planned. They did not have to remove any extra lymph nodes and she was headed home by 3 in the afternoon. She will have 30 days of radiation after recovering from the surgery. I guess if she had to get cancer it's nice that she got a type often seen that doctors know how to fix. Seems like she should get a break though.

I am feeling good again, finally. After several weeks of not so good. I'm feeling so good that I'm taking a road trip tomorrow to visit family in Wichita. Folks who don't travel so well anymore.

My joints are stiff and sore but the more I move the better they feel. Some times my body doesn't really buy that. "I'm sore as hell and you want me to MOVE?!?" The bottoms of my feet however, are much sturdier. So much that I have stopped taking the medication for neuropathy.

The big news today is about Mom, not me. Isn't that nice?
~Cathi

Still 100% Donor!

2010-03-14T21:12:00.002-05:00

Sunday night and I'm not quite myself though I am at my house which is nice. I am sure I will enjoy daylight savings time by the end of the week but today has been weird. I remember how the dogs would start pacing for their dinner early because they don't know the time has changed.

In fact, this is the first time change I've really experienced in a couple of years. My days pretty much ran together and I didn't really notice the change. Today I noticed it. And I want to know where the "daylight" is, as in sunshine.

The big news is that Mom has breast cancer. Stage 1 intra-ductal carcinoma. The most common, most curable. She will have a lumpectomy followed by radiation. Dang the luck!

I have still been battling fevers and on Wednesday I had a reaction to a drug I was getting intravenously. However, also on Wednesday I got the news that my DNA is still 100% donor. This is very exciting. Now there will not be a biopsy until the one year mark.

I have enjoyed watching the Big 12 basketball tournament. Even though KU won the final game, I thought KSU played great. KU is simply a phenomenal team this year. I'm happy the Buckeyes won this afternoon in the Big 10 tournament.

In other news my niece, Caroline, spent the night with me Friday night. We have been shopping and choosing items for her bedroom (she is 11) and she took me to dinner to thank me. Saturday morning we did some more shopping for the bedroom. Tomorrow my niece, Margaret, is coming to be here for a couple of days while Mom has surgery.

I have missed a trip I was planning to visit friends and relatives. Now I think I will just get up one day and feel good and get in the car. I did get a fragment of information Wednesday from Dr. Ganguly that some of the aches and pains I have may be part of my new life. I've been a little discouraged soaking that up and trying to decide next steps. I don't know if I want to know a lot of science about it--maybe I just want to try to deal with it in ways that seem obvious to me. I will make up my mind.

It is sometimes very tough to be upbeat when everything hurts. I have discovered that some of the problems I have that I thought were strength are actually flexibility and that flexibility is what I don't have. First step is yoga classes where I have an instructor to push me to stretch in ways I don't think of on my own.

OK. I have to be at work early tomorrow.
~Cathi

If it isn't one thing, it's another

2010-03-08T11:20:00.005-06:00

So. I got over the sore throat. Then was attacked by a severe headache. Which was accompanied by an itinerant fever that never reached the 100.5 threshold, but never went under 99.7 either. I swear I did not do too much after the sore throat went away, though it was very tempting to just tear through the house and get everything done that had not happened since Monday.

I went to the clinic twice last week. They did the bone marrow biopsy on Tuesday and I saw Dr. McGuirk. The biopsy results are coming back "with reservation" or without certification or something that means the sample was not good enough to make any calls until the complete chromosome analysis is back which should be this week. I had the headache Tuesday but it was coming and going and there really wasn't much to do for it. McGuirk told me I could go camping just not get my hands in the dirt. I think he hasn't been camping much. (giggle)

I went back to the clinic Thursday and once again all the tests for evil things regarding the headache and fever came back negative. Friday I visited a chiropractor. Presto! headache immediately lifted. Why didn't I think of that earlier? What a huge relief.

More exercise Ms. Maynard. I know I am not doing enough. I guess I don't know where to start though walking would be easy and productive. Someone at the clinic suggested water aerobics and that sounds like fun. However, I don't have a swim suit that fits and trying on swim suits does not sound like fun. Meanwhile, drink lots of water and get in a few yoga stretches with the Wii.

The nice weather this past weekend just about drove me crazy. I SO want to go outside and dig in the dirt. I know that to get new ideas, I need to be out there digging and preparing soil and clearing out and spreading new mulch. It's not the same when someone else is doing it for me, but it is ever so appreciated.

I have managed to catch up the laundry for the first time since I've been home. Finally, going up and down those flights of stairs is not so overwhelming and physically demanding. Finally the clothes which were laying about in piles have all been laundered and returned to a closet. And gratifyingly, the pile of giveaway items grows. It might be that I have been dilatory about culling my wardrobe for a few years, but this is the perfect opportunity to get serious about it.

Other small victories include opening the Gatorade bottle without the jar wrench and being able to drain the 3 qt saucepan with one hand. I take my evening pills with Gatorade and I stopped doing that a while back when I ran out. I took them with juice or water or tea or whatever, but that is when my potassium dropped so I'm back on the Gatorade (and the potassium is back to normal.) I have a jar opener that looks like an oil filter wrench except the loop is rubber. It's very effective on any size lid but it's nice to have something measurable to point to and say I'm gaining strength.

It is Monday and it is a work day and I must do some work. I am tickled to be feeling good once again. And I aim to stay that way. Lots of water and exercise.
~Cathi

Bit of a slump

2010-02-26T09:39:00.002-06:00

Hello on Friday. It's been a long week for me with a sore throat. I went to the clinic Wednesday and all the tests for evil things came back negative. I haven't had a fever or a cough or rash or anything besides a very sore throat. I started an antibiotic Wednesday and the throat is some better today but still sore. I have cancelled all my plans for this week and also missed two funerals I would have attended.

So holed up at home I've fixed computers and researched on line; caught up on periodical reading and crossword puzzles; watched the Olympics and anything I had recorded. Sigh. I'm on the verge of boredom. I'm tired of the sore throat. I might be tired because of the sore throat.

Perhaps the number of events I had to cancel is a clue to why I have a sore throat. Maybe I am doing too much. Certainly I say YES! to nearly every invitation. I am anxious to clear things out of the house that are no longer useful. I want to frame pictures, hang pictures, shop for accessories, all today.

I want to get the business onto a new track, going the same direction of technology. I want to see every customer, catch up on their concerns and make decisions about the best way to handle them.

I want to do the things I could not do for so long. And I want to do the things that are newly important to me. I want to be a health care activist; clean up Lake of the Ozarks; work with teens in the Scouting program. I want to make things for my grandchildren and bake things for my kids. I want to see every theatre performance in Kansas City, hear the musical ones and visit all the new restaurants. Do you know how many restaurants opened from July, 2008 to January, 2010? Dozens!

And for some reason I feel a compelling urgency to do it all NOW.

To quote a much loved boss from my past "Ain't gonna happen, Cathi. Think of something else." So I think I will make a list and mark everything A, B or C. Though I know from past lists there will invariably be A1, B2, etc. I can't decide.

So I'm on to another day of laying low, reading, plotting, planning and ... making lists. I am grateful to be doing these things in my house with my stuff [and not in the hospital like my fellow survivor Connie is today.] I am grateful the sun is shining and the temp might get above freezing today. I'm grateful my arms are now strong enough to snap the sheets when I'm making the bed; and looking forward to the time when I can fling the covers back to get out of bed. I appreciate my satisfying new furniture in the family room and the cozy throw to snuggle under.

A gratitude list. The best kind of list.
~Cathi

Choosing only what I want

2010-02-18T20:54:00.003-06:00

I'm on a mission to clean up my house. And I have help. ha ha ha. This job is too big for one person. I marvel at how one person could accumulate so much stuff!

There are the clothes. I don't have very many that fit right now and that is okay. I can live with fewer clothes. And I'm not crazy about the ones that don't fit anyway. Except the jeans. I really need some jeans that fit. Being fifty something, healthy and wearing hand me down jeans is suddenly bothering me a great deal. I am terribly grateful for the jeans that came from a friend when I was first able to wear clothes. But a shopping trip is in order.

That is one of the questions I asked at the clinic Tuesday. "Is it okay for me to go in a store and try on clothes?" Julie (nurse practitioner) looked at me like what's the question. Just live like a normal person. She even suggested water aerobics to help with my feet and strengthen my arms. No lakes but a swimming pool is okay.

My counts were good. Up. Hemoglobin is 9.6 now. Haven't seen that number in a long while. White cells are normal. Absolute neutrophils are normal.

I am very conscious as I go through the house, the remaining cartons and bags, the stuff that is "restored" to its place, that I can choose what I want to put back in my life. Everything was taken away and now I am carefully putting back in only what I want.

That is how I am finding I can live with less.

Lori came up and helped me this week. We went through the bins in the front room. We arranged the furniture in the front room so it is usable. I can sit in there and read the paper which I love to do occasionally. When there is a sunrise--which we haven't had for a while--the sun comes in the windows and I don't need a lamp.

Today was brilliant. The sunshine was fabulous.

My potassium was low for some reason this week. More bananas I think. I have to take potassium pills and those things are big honkers. Even cut in half they are enormous. I used to have to cut them in half just to swallow them. But I will be more conscious of my diet and at my next visit it will be normal. And I can do without taking another honking big pill. Tonight I made potato soup with 3 good size potatoes and then I ate every bit of it. I'll bet my potassium is normal tomorrow. Too bad my clinic appointment isn't tomorrow.

So I will continue making my choices. I truly miss having fresh flowers in the house. Not so much the plants, but the flowers.

~Cathi

Just not yet.

2010-02-14T21:20:00.002-06:00

Mark came for a visit this weekend and it was really nice to be able to do things with him and for him. This is the first visit where I've been healthy enough to do much with him. We went to Louisburg Cider Mill today and I actually went inside the little country store. When we went in October I had to stay outside because there were too many people inside. I had to drink root beer because the cider is unpasteurized. But today was different and very pleasant in the snow. The little store with its shelves of homemade jams and chutneys, soup mixes and apple cider pancake mix was warm and homey in the cold weather.

Daisy came along with Mark for a visit and she remains charming as ever. I took some fine pictures of her but I forgot my camera at Mom's this evening so no photos with this post. I hate not being able to pet her and play with her. She camps in the corner where her kennel used to be and I wish she could camp for longer.

I bought one of those pill caddies with a spot for morning and evening pills. And all my pills fit in the compartments. There's a milestone! I remember parceling them out into a dessert dish at Mom's house and there was literally a pile. So this is nice. I can take them all with one glass of orange juice (or Gatorade at night.)

I am still frustrated by the lack of strength in my arms. Tonight at Mom's I was trying to help her with dinner and I struggled to hold the pan with two hands. I couldn't fold the afghan neatly after I used it because I have no strength when my arms are raised. More weights. More weights.

I went to a yoga class at the Cancer Action Center Friday and it was interesting. The poses were for the most part much more complicated than I can manage. I can't balance on one knee--I can only barely kneel. And when I kneel my mind is reeling at the idea that I will have to get back up. I must keep doing these things until I can do them without thinking. Right now there are sheets to be folded and the effort seems overwhelming.

The overall aches seem to be less so I am surprised by these tasks that I struggle to perform. But it's always "yet." I simply can't do them yet.
~Cathi

Clean Teeth

2010-02-12T20:01:00.007-06:00

Got my teeth cleaned Tuesday. What a great feeling! I can't remember when a cleaning has made such a difference in how my mouth feels. When you have the pearly whites cleaned regularly you don't notice the grunge. After 18 months I noticed it! The dentist reported more good news that my mouth and gums look healthy. The only teeth needing attention are the same two that needed it before I went in the hospital. (Remember I had a temporary crown that fell off when I was first in the hospital? I was in the process of getting some things taken care of.)

Today I went to the Garden & Remodeling Show. I stuck with the Garden side of the building. I had lunch with Bridget and then we toured the American Royal building next to Kemper. I do not know why I was so anxious to go to the garden show since I can't garden. The show was a bit disappointing. There were no big displays from which to get ideas. I guess I need to go to Wichita for that. (The Wichita garden show is spectacular.) Nevertheless I bought some bulbs and rhizomes. Stargazer Lilies, 1 yellow peony, some purple tulips and a couple of Bleeding Hearts. They had some tangles resembling twine in bins labeled "Hostas." I've never seen hostas like that and I didn't think this was the year to try but they were intriguing and seriously less expensive than growing green hostas. Hopefully there will be a kind soul to plant these things for me and then I can devise some protection from the lawn mower. I would like to plant the lilies in the spot where other lilies have been mowed down the last couple of years. They came back a couple of times, but too much mowing and finally...no more lily in that spot.

My feet hurt this evening but the rest of me feels fine and energetic. I will try my brain at the Friday crossword shortly, always a test of wits at the end of the week.

I have spent two days in my office this week. Totally in my office, without leaving the house. There are no more piles on the floor or the futon. The bookshelves are not exactly attractive, but you can locate an item on them. I also worked on busted computers. Two out, and two more to sort out. It's quite a process and I will get better again at knowing when to quit trying to salvage the install and just wipe the hard drive. Those fellows who work for "Geeks to Go" know when to wipe the hard drive--FIRST. They don't even try other options.

So my office looks nice but the rest of the house is a true jumble. Mark is coming up this weekend and I feel like I should at least fold the clothes on his bed but I don't know if I will get to that. They may just be on the couch in the morning. sigh.

This is normal life. Confusion and lists and never getting finished. One reason things don't happen as fast is that I like going slower. I like enjoying the moment even to iron or sweep the floor. I like taking an extra 15 minutes over a cup of coffee and the paper in the morning. These are little pleasures I would not allow before 7/11. So I'm defining "smell the roses" for me. The demands of the outside world can wait, just a little while.

~Cathi

Ordinary events are exhilarating

2010-02-06T21:08:00.004-06:00

I've just returned from a Scouting District Dinner where I cheered for Troop 91 award recipients. Brant Tidwell received the District Award of Merit and John Jurcyk received the Outstanding Committee Chair. Well deserved awards. Both of these fellows have been keen organizers of the troop to help during my illness and recovery. This was the second outing this week. Monday night I attended the troop parent-son banquet and had a marvelous time.

I cannot seem to put into words how it feels to be "out." To be able to go somewhere, eat buffet food, say hello and hug or shake hands. It is a routine event for most people. To me, it is fresh and new and exhilarating. I saw people tonight I haven't seen since before I got sick. Most of them knew I had been sick but some didn't. One fellow commented on how short my hair is these days. He had no idea I'd been sick and that was a nice change.

Maybe if I describe the things I did tonight that were forbidden for so many months. Going to a public place, shaking hands, hugging, eating food from a buffet, drinking from a cooler, using pepper on my food, enjoying cake cut by someone else. If you look at the list backwards, it is a clue to life on the inside. All food prepared on-site. Bottled water. No leftovers. Tonight was just a big treat. Monday night I ate chips from a huge community bowl; a real luxury.

Standing and chatting tonight was fun and I am grateful I had the strength to do it. My feet hurt but I wore my hiking boots and they are good support. I am probably boring my readers but it was a really fantastic evening for me. When I take one day at a time I don't think so much about what I cannot do. But when I can do it, I marvel at my good fortune.

I retired two pills this week. Dropping the empty V-fend bottle into the trash was a ceremony. Parking the Urdosiol bottle in the unused cabinet was the opening ritual. The vitamins I take now exceed the prescription drugs I take. Even vitamins are parsed out in this recovery. I ask permission to take them and get a lot of no's. So far I can take calcium/vitamin D, B-6, and a B complex. No multi-vitamin. No E or K or any of that wild stuff.

My body hurts quite a bit as I do normal daily activities. I'm still building strength and muscle tone. I have to pace myself and do the most important thing first. For example making sugar cookies has been on the list for 3 days and the ingredients are in a neat pile on my counter. But I put it off in favor of more important things like laundry and errands and work and cooking; then when I have time to make cookies my feet hurt too much and I choose to sit down instead. Tomorrow? cookies first.

My circadian clock seems to reset regularly from sleeping 9-5 to 11-7 or even 8. I hope that it settles eventually into the earlier mode but I guess with all the changes going on right now it's logical that my sleep would change too.

I will close by telling you that I am enjoying a kahlua and cream as I write. A simple pleasure to enjoy occasionally. Dr. McGuirk said "no scotch" so I am abiding by his rules.

~Cathi

Baby Steps to Giant Steps

2010-02-03T10:18:00.005-06:00

Suddenly it seems the speed of my recovery is snowballing. Yesterday at the clinic I saw Dr. McGuirk who kept saying "you look really great!"

I feel pretty damn good, not just physically, but psychologically too.

Two weeks til I visit the clinic again. I have not gone 7 days without seeing a doctor since July, 2008. This will be a real treat. Next Tuesday I do have an appointment though, to get my teeth cleaned. Oral hygiene is an odd thing during treatment for blood cancer. They don't want you to floss when platelets are less than 50, so for much of the last 18 months, no flossing. (This is because of the risk of bleeding.) No brushing at certain times, I can't remember why. I had a sponge on a stick that I dipped in a fluid that tasted a little like fluoride, not abrasive at all, that sort of freshened my mouth. So getting a full fledged teeth cleaning is going to be a real treat.

I went with Annie, my daughter-in-law, for a manicure-pedicure in Chicago which was just divine. I must find a place in Kansas City with that kind of treatment. Dr. McGuirk looked at my nails yesterday like he always does and exclaimed "they're polished!" I did not feel one bit bad. The scruffy part of my nails is nearly grown out. As a result of the chemo they turned a bit yellow and then became increasingly flaky as they grew out. The good news? The ridges I had before are gone too! A fresh start.

Another fresh start that hadn't occurred to me was immunizations. When I lost my bone marrow I lost my childhood immunity. So yesterday I received five vaccinations. For polio, diphtheria-pertussis-tetanus, pneumonia, hepatitis and a flu vaccine given to babies. As a regular camper and outdoors person I always had a tetanus shot annually. I'm happy to be well enough to be immunized! This does not mean I must avoid immune suppressed patients. Only persons who receive the nasal flu vaccine must avoid immune suppressed patients.

After tomorrow I will be taking two less pills per day. The anti-fungal and the corresponding liver saver on the theory that the anti-fungal causes the liver enzymes to rise. It has been one year since I had pneumonia. The anti-fungal drug is aimed at fungal pneumonia, which was the medical team's best guess at the cause of my pneumonia though they were never able to identify a fungus from the many cultures. I spent the entire month of February 2009 in the hospital very sick with pneumonia. I think that is the single event that extended my recovery period and there are still some effects from it. There is scar tissue that causes some pleuritic sort of pain when I expand my lungs for a deep breath. Dr. McGuirk's solution for that is exercise, exercise, exercise. Deep breaths. Break up the scar tissue. So cold be damned, I shall put on my boots and start walking. "Are ya ready boots?"

I should mention that my lungs look much much better than anyone ever expected. One time last year after a particularly positive CT Scan Dr. Aljitawi said "you are the miracle girl!" A happy title.

My counts yesterday were still rising. Platelets 105 (normal is 150), Hg 9.0 (normal 11-14) and WBC 5.1 (that's normal!) The booster and the Revlimid are still ammo in reserve.

I asked about overseas travel and Dr. McGuirk said "oh get real" and I said "maybe Italy in October?" He replied "October? Oh sure that will be fine. Where in Italy?" "Florence." "My sister used to live there. She worked in the Uffizi Gallery." Very fine. A vacation to plan.

My trip to Chicago was excellent. Conor and Annie are terrific hosts. I slept good--without drugs. And I feel like I know little Harrison a little bit better. Getting to know him and make up for lost time. I was disappointed that I am no stronger in Chicago than I am in Kansas City but I figured out how to carry him up and down stairs safely. Certainly I was way stronger than just a month ago at Christmas. I could pick him up and swing him, so next time I go I will be ready to schlep him anywhere. I am signing on to be the chief cook and bottle washer after the next baby comes in May.

Finally, many people have asked me if I will continue keeping the blog. Yes I will. I think my recovery is just getting rolling and there are still many changes to come. I want to write about some events that haven't made it to the blog during this time of itinerant posts. I am looking forward to having more privileges, one by one. And I will be writing about the experiences in this blog so stay tuned.
~Cathi

An unexpected privilege

2010-01-27T13:40:00.002-06:00

At the moment I am in the airport waiting on my flight to Chicago. I'm looking forward to having a fine time with Harrison and Conor and Annie. I will be able to take care of HB, play with him, bathe him and even change his diaper which has been off limits til now. yuk yuk.

At the clinic yesterday I saw Julie who just about did back flips over my rising counts. My hemoglobin was 9.1 Nine would be a milestone. I probably won't recognize the number if it gets much higher. I used to be so happy when it was 9 or over before I got sick.

Julie gave me another drug that should help the tingling in my feet. When they only tingle and don't swell, they are not so painful. I hope that not swelling is because my counts are going up. Yesterday I was able to come home and do quite a bit of housework without my feet giving out on me.

I am still trying to make my house more cozy by restoring order, hanging pictures, sofa pillows and other little items. Currently I have some extra furniture in the front room that will be hauled to Lawrence to my nephew. Said nephew's house burned down the first day of finals in December. KU was extraordinarily helpful to him and his roommates and they were able to reassemble class notes and study materials to finish the semester. The Red Cross also helped the 3 boys. But he is looking for furniture and I have some to give him.

Julie scheduled a bone marrow biopsy for March 2nd. I had a long list of reasons why this was a good idea, but she said "If you're nervous about it, we can do it earlier than 90 days." So I'm happy about that. It would be tripping the light fantastic to have two good biopsies in a row, but I have no reason to think the next one will not be the same "no evidence of host cells."

I am working less than I was and seem to have found a good pace. I'm getting anxious to get out and talk to more people about what's going on in the world of IT. My upstairs office is very nice and I like the setup. I need to get real desks in there with keyboard trays so that my arms don't get used up.

Privileges. My platelets yesterday were 84. That's high enough to fly, to get my eye fixed, and to have sex. The latter was not on my list of things I really wanted to do...it takes two, right?

Now they're calling my flight and I'm off to Chi-town.
~Cathi

One less pill

2010-01-22T18:52:00.002-06:00

Last night when I finished measuring out all the pills I threw one bottle in the trash. Of course tonight I set one aside to be refilled. But I like taking fewer pills. Tonight when I was opening bottles it felt like I wasn't finished.

My counts on Tuesday included a lot more normal levels on the chemistry report. Sodium and calcium have been stubbornly low but Tuesday both were in the normal range, just barely but in the range is good.

Wednesday I was all pumped up and excited so I went shopping. I checked out a store that opened while I was sick and strolled through Costco which I have not been able to do for a very long time. I skipped the grocery store because my feet hurt so much, but managed to go buy a celebratory charm for my bracelet. The result of all this shopping was a couple of days on the couch. I have a lot more energy than my feet can stand. This afternoon I have finally been able to stand up without wincing.

I'm working out how much walking and standing I can tolerate. Do I measure it in time or distance? Minutes or hours? Feet or miles? My feet don't seem to have a 2 minute warning signal, more like the penalty whistle in a hockey game. I feel fine, I get in the car to go to the next place and my feet blow the whistle. If I get in the box before the whistle blows can I take the two minutes then go back out?

I am still working a little bit, mostly as an advisor though there are some things I can do from home. I have a new business plan in the works. I had a chair massage today. I have a teeth cleaning scheduled for February. I'll be getting a pedicure before I go to Chicago next Wednesday.

~Cathi

Pedicure and massage and the dentist

2010-01-20T10:02:00.003-06:00

I saw Dr. Ganguly at the clinic yesterday and it was kind of odd. He came into the room, most business like as always. I had to adjust from expecting a happy grin to on with the show. He did finally look up and pause and say "yes this is exciting."

My counts were good. White cells are in the normal range now. Hg is 8.4 and Platelets 68. One liver count (out of 4) is still elevated but no one seems too worried about that.

My appointments have been stretched out to once a week. (I'll be visiting Chicago next week.)

When I finish taking my current prescriptions of Levaquin (anti-sinus infection-biotic) and V-fend (very expensive anti-fungal) I do not have to refill them. I will keep taking Acyclovir (anti-viral) and Dapsone (pneumonia anti-biotic) until June, the one year anniversary of my last transplant. February will mark one year without pneumonia.

They will do a biopsy in March (3 months) unless something indicates one is necessary before that. If the chimerism still shows "no evidence of host cells" we will relax a little bit. The doctors are not taking Revlimid off the options, but they're not sure if or when or how much.

They believe the 2 weeks of Revlimid did the job of conquering the 5q- so that Walt's cells could take over. Isn't that amazing? Revlimid, and other drugs derived from Thalidomide, are working wonders in the world of blood cancers and bone marrow disorders. I will have another biopsy in June at the 1 year mark.

I am still taking a drug for my elevated liver enzymes which is a little bit of graft v. host. My feet tingle and even hurt sometimes, an effect of the chemo which may or may not go away. But I feel very good. Have lots of energy and am working a little bit.

The boy scout troop asked me to deliver the charge to 8 new eagle scouts at the eagle court of honor Sunday. I am honored and excited. I’m going to talk about gratitude and persistence. I think I have those things in common with Eagle Scouts. However, I must find my uniform and see if it fits. I can't remember if I kept those britches that were too tight or if I'll need a new pair. This is the result of putting my life into trash bags in the garage and then restoring it. Nothing ever is the same.

I didn’t get a lot of privileges I was hoping for but I can get my teeth cleaned and have a pedicure and a massage. I have even scheduled a chair massage for Friday morning. I cannot have house plants, pets, or fresh flowers. And I cannot paint a room or hike in the woods. Some of these things will come at the one year mark. Others as the blood count numbers indicate it's safe.

The new photo is from the first day I dressed in work clothes to visit a client. I felt really good. The red sweater vest is one of those things that was in my closet that I didn't remember buying. As you can see I found a use for it.

~Cathi

Up!

2010-01-15T17:38:00.002-06:00

I love the movie. And I love seeing the printouts at the lab.

Today everything was up. Platelets are 49. They must be 50 to fly.

I'm not booking my ticket yet because I think that next Tuesday when I see a doctor they are going to tell me I only have to come in once a week. Then I can book my stay in Chicago to last longer.

I tried my theory out on one of the nurses today that the Revlimid weakened the 5q- enough to let the donor cells roll over. She said "tell them. That's how treatment evolves. Maybe that's what they'll start doing for everyone with 5q-. Two weeks of Revlimid." Isn't THAT an interesting thought?!?!?! Revlimid is very very expensive and it comes in a 4 week prescription. So I have roughly $5,000 worth of pills sitting on my counter that I am thinking of buying a trophy base for. I am not stressed about that money (my share was 10% which is difficult enough to pony up when you're not sick.) The first $5,000 worth got the job done and that's what this process is about. Getting the job done.

I bought a new couch today to celebrate. I gave my old one to Mark when he graduated from college and I was using a loveseat as a couch. Now I have a short couch that is still longer than the love seat, with a chaise at one end. I'm laying on it as I type this message. It's lovely.

I have been working a little bit but I realized I have limits. One day this week I was standing in front of a server and my body suddenly sent a message "Ok, I'm finished for the day." Just like that. And it was finished. Finished working, driving, reading, eating, cooking....just done. I'll be pacing myself a little better from now on.

This weekend I am taking a solo roadtrip to visit Debbie who lives about an hour and a half away. Just testing my wings.

It is a wonderful freedom to be able to hug everyone. To be able to pack an overnight bag. To eat a salad whenever I want.
~Cathi

Lucky Tuesday

2010-01-13T20:02:00.002-06:00

In my last post I wrote "I'm thinking lucky for Tuesday" referring to the next clinic visit with a provider.
And what a LUCKY TUESDAY it turned out to be.

The biopsy report was a bit strange...never had one quite like it before. "No genetic markers." Does that mean no 5q-? YES IT DOES! "No evidence of XX chromosomes." Does that mean my marrow is all donor (XY chromosomes?) YES IT DOES!

No percentages. No list of genetic oddities. Just no host cells.

How cool is that? I have to tell you it took a little while to switch my outlook from sick to well...at least 5 minutes and a trip to the bathroom. Dad was with me and it was hours before he could talk without choking up.

My counts are still on the low side, but not low enough to need transfusions. Hopefully they will gradually rise to normal levels over the next few weeks. I warned Conor and Annie that as soon as they are high enough for me to fly, I will be visiting to spend more time with my grandson!

Dad and I went to First Watch and ate pancakes to celebrate. Then I packed a bag and hopped in the car with him for a trip to the lake house. Which is why it has taken me so long to update the blog. Mom went to Wichita Tuesday morning with sister Lori to help sister Mari unpack after she moved. Dad and I went to the lake house to make sure the furnace was working and to put the ice eater in the water. I had not been to the lake house since 2007 but it was the same. The same peace and calm was there that I enjoyed.

Alas, we were waaaaay too late to get the ice eater in. Dad chopped one small hole in the ice but that was all that was giving. The first hole was close to the dock, about 4" thick ice. The second hole attempt was in the middle of the slip and 4" wasn't even close to all the way through. The cove was frozen over from shore to shore. But all the floats were intact and I reckon they were pretty much encased in ice so hopefully they will last through this freeze. An ice eater churns up the water so that it can't freeze.

We went out to eat at the lake last night and I enjoyed fried catfish. I can't explain how good restaurant food tastes. Tonight I went over and fixed chili for me and Dad and I note their house is looking very "pre-rehab ward." No rolls of paper towels everywhere. Dad back in his chair that I had commandeered. There is still a basket of pills on the counter--obviously some I no longer take.

I will still take a pile of pills for a while, particularly those aimed at preventing pneumonia. But it will soon be a year since I've had pneumonia, which was a milestone I was looking forward to. However, I do not have to take any anti-rejection drugs. Bone marrrow transplants are different than organ transplants. They work or they don't.

I was so surprised to hear my blood is all boy. I was hoping there was enough boy blood for a booster to be possible. I like my theory that the 2 weeks of Revlimid disemboweled my cells enough to cause them to roll over and play dead so Walt's cells could get busy and take over. I'm not sure the doctors buy it but I haven't heard a better explanation from them.

Walt spent 5-6 hours in the chair in the aphereses lab while they extracted T-cells for a booster. Those babies went in the freezer, and it looks like the freezer is where they will stay. I'm grateful my brother has been willing to sit in that uncomfortable chair 3x for me.

I'm grateful to everyone for the prayers and positive thoughts all during this. Shoot, I'm tickled people remember me after a year and a half!

I'm going to continue living in my house like a healthy person. I have been able to work just a little bit. I have some new pictures [of myself] but I can't seem to lay my hands on the gear to load them up to my computer right now. My house looks like a very busy person lives here. There are piles everywhere, of clean laundry, dirty laundry, mail, newspapers, and the clean dishes have not been unloaded from the dishwasher for 3 days.

So celebrate with me. This is just a most awesome situation I'm in.
I will get through my piles and post again.
~Cathi

Eating out once again

2010-01-09T13:22:00.003-06:00

Another long gap between updates. I've celebrated my 56th birthday and New Year's Eve in fine style. I've been able to get out and about despite the snow. I've been working...for other people. And finally I am about to do some nesting while this lovely snow lays about.

Clinic days have been Tuesday and Friday. Tuesdays I see a doctor and Fridays I just have labs. This past week I received blood on Tuesday but nothing on Friday. In fact yesterday my ANC was 1000. That means I can eat out. I headed directly for Sonic. Today I will satisfy my persistent craving for Bo Lings. (ANC is absolute neutrophil and is the fighting part of white blood cells.) I'm kind of bummed that some friends are out of town or snowed in and can't be lunch dates.

I have been working for a customer and even been in their office several times, usually after hours when not many folks are around. Working has renewed my energy and even though it's tough sometimes to find solutions, it's fun. I like seeing people and I like seeing computers.

My dad and brother brought Dad's tractor over and scraped my driveway two days running to get rid of the remainder of the deep snow from Christmas. And after Wednesday night's fresh fall two young men carrying shovels knocked on my door and for $20 I had a clear driveway once again.

I saw Dr. McGuirk on Tuesday. He reported no leukemia in the biopsy but that's really all the results we have so far. I expect to hear more this coming Tuesday. He said he "feels very good about the biopsy based on conversations with the pathologist." So coupled with a high ANC yesterday I am feeling very good too. I confess I've felt a bit flat between waiting on the results and working desperately to solve a huge work problem.

Southwest Airlines has such great sales right now, I'm tempted to buy a ticket and hop up to Chicago again for a couple of days. I think that might be pushing my luck today, but I'm thinking lucky for Tuesday and then who knows? Next post could be from the deep freeze.
Cathi

Home and healthy

2009-12-29T21:26:00.004-06:00

I went to Chicago. My whole family was there thanks to Conor and Mark getting Mark out of OKC before they closed the airport Thursday morning. I played with Harrison. And I came home healthy. Very remarkable considering I have almost no white blood cells.

Mark got up there Wednesday evening and the kids scoured the house again getting ready for me. I so appreciate all the work and special food so I could be comfortable and safe.

I wish I could have stayed longer because I was just getting the hang of Harrison's routine when I had to leave. I spent most of the day Saturday at Loyola hospital getting refueled. They transfuse at a much slower rate than KU. I persuaded the nurses to speed it up a little but not enough to get much HB time. Conor and I got home in time to bathe him, which is very fun.

We made keepsake plates with penguins made from everyone's thumbprint. Conor and Mark didn't laugh at me for once and were very good natured about painting their thumbs. Harrison wasn't so sure. But we got a print from him.

The clinic visit Monday was uneventful. I saw Dr. Aljitawi but don't have any news or even speculation. We have to see what's going on in the bone marrow and the biopsy is scheduled for Thursday. After that I expect news to trickle in, starting with no news is good news.

Meanwhile, I'm still at home. My birthday is tomorrow and I'm hoping friends drop by. If you're in town, stop by. I feel good and energetic. I loaded Christmas pictures up to Facebook, and I will put them out on Snapfish or something so more folks can see them. But here's the prize.

~Cathi

Dang the flu anyway!

2009-12-22T15:59:00.003-06:00

Well I missed my planned flight to Chicago today. But not because of anything here, because the poor kids in Chi-town have the flu. We're hoping it's shortlived and I can go up on Thursday. Meanwhile Walt took me to the clinic bright and early this morning where I got platelets. And the counts from the lab were not so hot. Even after a neupogen shot yesterday my white cells were at 1.7. Not much resistance in that.

So I have done the things today in preparation for Christmas that I had decided didn't have to be done. There's always one more thing to do to get ready I think. I always have one more thought for a stocking stuffer, or one more recipe I haven't made this year. I plan to bake again tomorrow, but today I picked up a couple of those stocking stuffer ideas. I wear a mask in the store, use lots of sanitizer, and try to resist picking up too many things in the process of making my decision.

Last night my old Venturing Crew paid a visit. Venturing is a boy scout program for boys and girls age 14-21. Our crew had a trip planned to Packard High Adventure Base near Salida, CO when I got sick. Fortunately they were able to find women to accompany them so the trip went off nearly as planned. Three of the four kids who took the trip visited me, returned my borrowed gear, and delivered a wonderful photo book. Jerrod created the book and his sense of humor and writing skills are excellent. They had a poster with them on the trip "We miss you Cathi and wish you were here." The book includes a couple of shots with the poster. There is a pic at the top of Mt. Shavano, a 14er, and I'm reasonably certain they would have missed me for that leg of the trip even if I wasn't in the hospital!

To cap it off, they wrote a song about the adventure for the last night campfire that they sang for me last night. It's pretty special to have 3 teens in your living room singing. It was a wonderful holiday visit.

Clearly my counts are not recovering after being off the Revlimid. Perhaps the Revlimid just hastened what was already happening. I am just focusing on the here and now. I still feel energetic and upbeat. I have a bone marrow biopsy scheduled for Monday the 28th to see what is really going on. Hopefully a booster will still be possible. Hopefully the 5qs will not have taken over. The sinus infection seems to be completely cleared up. I have a new humidifier on my furnace that is keeping the house less dry. Plenty of Ocean spray. (That would be from the pharmacy aisle, not the fruit juice aisle.)

I have more time to finish the laundry and pack and get ready. I would like to be playing with Harrison, but soon.....
~Cathi

Chicago, Chicago. Oh that toddlin' town....

2009-12-19T21:07:00.003-06:00

It's been a week of ups and downs. The graft v. host is driving me nuts. Itching, nothing tastes good, mouth tender. The blood work showed rising liver counts so I'm on an additional drug to deal with that.

The sinus infection is not going away nicely. I'm getting daily IV antibiotics at the clinic. I assume they haven't switched me to oral antibiotics because my counts are bobbling all over the place. I've had several transfusions this week. Platelets were 22 one day, 38 the next and 8 the day after that. This is down from well over 100 for weeks.

The only real news I've had is that they are going to make sure I get to Chicago for Christmas. The NP said "we will just transfuse you and throw you on the plane." KU will set something up with a BMT program in Chicago for a pre-flight refuel on the return trip. So I'm wrapping and packing. A person has to have platelets of 50 to fly.

We will do a bone marrow biopsy after Christmas to see what's going on. I expect the counts to be back up by then. Revlimid has a long half life and its effect on my counts can last quite a while after I stop taking it. The team is very worried about losing the graft again, but always in the past when I had GVH the donor cells were working. I just cannot reconcile all the symptoms I have with losing the graft. So I remain optimistic. Most of the time.

I've been a little teary worrying about not being able to go to Chicago, and about the transplant failing again. So the key is to stay rested and stay busy. There is lots to do here at Christmas time.

I made Rocky Road candy today and I felt pretty smug about not having to hide it from Mark. I used to make it, then try to fan the chocolate smell out of the house, then hide it somewhere because if he knew I made it, he would be busy looking for it. And half the pan would be gone in the morning! However, I underestimated how much Walt and Caroline could eat in mere minutes when I offered it to them during a shopping break! I will be making more tomorrow.

I stayed at Mom's for a couple of days and Walt stayed here with me for a couple of days. I ran a fever every day with the sinus infection and that just took the vinegar out of me so I needed a companion. Walt has fixed a lot of little things in the house and is here again working on a humidifier. Hopefully that will help prevent more sinus problems.

I still have lots of energy, except when the temp goes up, so I'm enjoying baking and cooking. Wrapping and nesting. What we do when it's cold outside.
~Cathi

Revlimid and why I did not get a booster

2009-12-15T16:20:00.002-06:00

The goal of a bone marrow transplant is for the donor cells to graft to the host environment and the host cells then disappear for lack of use. (Think of grafting a beautiful rose with a weak root onto a stronger root stock.) Gauging the progress of the transplant is some art, some science based on watching the body's reaction.

While the donor cells are working on the graft, Doctors are looking for symptoms of graft vs. host disease (gvhd.) These symptoms commonly include rash, nausea, diarrhea, facial flushing, loss of appetite. As long as one or more of these symptoms is present they know the donor cells are busy.

Another indicator is the blood counts, specifically hemoglobin, white cells and platelets. If those counts are rising while gvhd symptoms exist, then we can be pretty sure the donor cells are active.

Results of bone marrow biopsies over time show exactly what is happening in the marrow, but this is invasive and is generally called for when there are no other signs to rely on.

The results of my last bone marrow biopsy showed 66% donor/34% host. And 95% of the host cells had 5q-. So I started taking Revlimid to kill the 5q- and preparing for a booster. Two separate courses of action. By the time of that biopsy, most of the gvhd symptoms had disappeared, indicating the donor cells were slowing down. But the blood counts were still high and rising which was a good sign. So the booster was to "rearm" the donor cells so they would go back to work. The Revlimid is to kill the 5q- cells so I don't get Leukemia again.

After taking the Revlimid for a week, the gvhd symptoms reappeared in the form of a rash. The rash first showed up on the day the booster was scheduled. There was a lot of debate about whether it was actually gvhd, but the doctors felt they had time to see if it developed further before they proceeded with the booster. Having gvhd symptoms again indicates the donor cells are back at work.

And it has developed into full blown, uncomfortable gvhd. Now we still have the booster option in our arsenal of backup ammunition.

Revlimid has an impressive track record at curing 5q-. It has some side effects that include blood counts dropping. Stopping the Revlimid for a few days usually sees the blood counts return to normal. My counts are rising daily so I will probably start taking the Revlimid again by the end of this week. The only sure way to check the results of Revlimid is with a biopsy and as long as things on the outside are looking good, we won't do a biopsy for a few weeks.

My theory is that 5q- is what powered my cells and made it impossible for Walt's cells to graft. Killing the 5q- weakens my cells and his cells can get busy. My hope is that we can maintain this balance of weakening my cells and strengthening his til a full and effective graft can occur.

~Cathi

Neutropenic again

2009-12-14T12:20:00.002-06:00

Neutropenia means my white cell count is too low to fend off any germs and I must follow careful guidelines to avoid them. The no raw food diet, the don't go anywhere precaution, the guests check germs at the door.

The low counts are likely the result of the new drug, Revlimid. The prescription advisory says that 80% of patients have to stop it during the 1st 4 weeks because of low blood counts. Which makes me part of the normal majority, whatever normal is. I think that it won't last long because the counts this morning were much higher than last night.

Last night I went to the hospital because I had a fever, most likely from another sinus infection. Of course they drew blood and my hemoglobin was 5.5 so they would not let me leave the hospital without receiving a unit of blood. The good news is the hemoglobin this morning was 8.4 which is a much bigger jump than the 1 point or so expected from a unit of blood. So the factory is still working, it just can't keep up with the consumer demands here at Christmas time. I also got a neupogen shot this morning to boost the white count.

So my plan is to finish my shopping on line and do some baking here at home. I needed a reason to stay home and hit the paperwork. As if the forecast of 18 degrees high today isn't enough to keep a person home!
~Cathi

Lucky tractor socks

2009-12-09T20:17:00.002-06:00

Tuesday, December 8th, yesterday, was Booster Day. I had a clinic appointment at 10:00 and then off to the hospital. I showered and dressed carefully in all my lucky items: tractor (John Deere) socks, "Life is Good" hat, and my Cabbage Key t-shirt. Walt and Dad went to the apherisis unit very early and Walt was hooked up to donate the booster cells.

Robbie and Charlene and I loaded up and rolled in to the clinic. I persuaded the nurse at the clinic to put in an IV so I only had to be stuck once, then I visited with Dr. Abhankar. I reported a rash on my chest and blotches on various other parts of me. Dr. A looked the spots over and asked me a lot of questions about the bright red flush in my cheeks that seem to just happen to me occasionally. Finally he sent me to the hospital to the dermatology suite to have them look at the spots.

The resident I claim as my dermatologist looked at the rash spots. Then she called in her supervisor who looked them over. Everyone seemed to agree they looked a lot like Graft vs. Host Disease, but nobody was certain a biopsy would be conclusive. So the dermatologist called Dr. Abhyankar and reported. Then Dr. Abhyankar called back and told me that they (Drs. A and M) hoped the rash is GVH and so they decided to not give me the booster. "But go ahead to unit 42." The purpose of the booster was to boost Walt's cells into waging war again with mine and inciting GVH so the graft will get stronger and more permanent.

So we three trooped up to the 4th floor and finally found our way to my room on unit 41. Robbie and Charlene went off to find some lunch and the doctors continued thinking out loud. Finally my nurse came in and said "you are the easiest patient I've ever had." She removed the IV line and gave me a printout of my labs and shooed us out of the hospital.

Seemed like a very big day on which virtually nothing happened. And another surprise was an email in the afternoon scheduling my next clinic appointment for a week later! A longer leash is always enjoyed. Walt's cells have been stored in the freezer for possible future needs.

Today the rash is plenty itchy. It's still inconsistent, moving from my neck to my back to my abdomen and it doesn't look very red. I expect it will be more itchy tomorrow.

Robbie left for Vermont today but Charlene is still here. She cooked a fabulous gumbo for supper tonight and there is plenty left over for another meal. We had bar-b-q last night. Visited the Boulevard brewery Monday, had a fine dinner Monday night with other friends. I have enjoyed myself and maintained my energy through it all. Feeling energetic is WONDERFUL.

I am washing the lucky tractor socks so I can wear them again tomorrow. And every day after that they are clean in my drawer. They don't itch, but they seem to cause it.....

~Cathi

Don't wiggle the toes.

2009-12-06T12:11:00.002-06:00

I have neuropathy in my feet. They tingle. Sometimes they tingle sharply and sometimes just barely. They only tingle from my toes to just past the ball of my foot most of the time.

The more I stand or walk, the more they tingle. Most of the time it's tolerable. Particularly if I am engrossed in something like the Barbie doll exhibit at the Toy & Miniature Museum.

But when I get in bed at night, the tops of my toes tingle. It feels a little bit like cold so I wiggle them inside my socks to warm them up. This is instinct or reflex, I don't know which: but it is NOT the right thing to do. Wiggling makes them tingle more. I lay a quilt over my feet whose heaviness forces the blankets down to the tops of my toes. And then I repeat a mantra, "don't wiggle." I forget sometimes and wiggle, then the voice in my head says "oh yeah, that doesn't work." doh!

I wish for the voices in my head to be more active than observant but that's probably another reflex thing.

Charlene is here from Oklahome City. I drove to the airport yesterday by myself. Remembered where it was and arrived a full hour early because I confused the times. Bought a Starbucks and read the paper. Her daughter, Hilary met us and we went to the Barbie exhibit and did some serious shopping. That would be lots of walking and browsing but not much buying. Today Charlene and I will drive to Baker University to hear Hilary's choral concert.

Robbie arrived today and Carla collected her. We will all meet up sometime tomorrow.

Tuesday is the booster. Walt goes in early to donate and I get the cells fresh. I don't have a time yet so I'm packing the scrabble game and a book and going along.

I am still in my house and still enjoying it. I have lots of energy and as long as the tingling is tolerable, I just keep on going. I went to Nebraska Furniture Mart this week and purchased a computer on behalf of a group organized by Sally. We are making a good Christmas for a young girl with chronic myeloid leukemia. I am tickled to be able to walk the aisles of NFM without tiring, and to be a part of making something good for someone else.

~Cathi

There's going to be a bump in the road....

2009-12-01T17:05:00.004-06:00

I went to the boy scout court of honor last night with Brant. I had a great time. With adults, it was like I was at the meeting last week--we just picked up where we left off. With the kids I had to ask their names. They came up to me and said "Hi Mrs. Maynard. Remember me?" Weeellll, maybe.... Seems like they should stay short and scrawny til I give permission for them to grow.

When Brant dropped me off he had this to say which put things into perspective for me. He had been reading the blog and all the good news and had the thought "It really doesn't happen this way, just sailing on up. There's going to be a bump in the road."

So here we are at the bump in the road. The new drug arrived via FedEx today. Revlimid. Walt received his call from the transplant coordinator arranging the donation for next Tuesday. I don't know if I get the boost Tuesday or if they will freeze it until some designated time. A designated time would be after so many weeks of Revlimid, or when counts equal something or a bone marrow biopsy shows something.

I'm having fun living in my house. There are still bags and boxes of unidentified stuff around here and I've dug through one or two. Lots of laundry but I decided 2 loads a day is plenty. Yesterday I found my treasured recipes. The ones torn out of magazines and written on scraps of paper by friends. There have been lots of searches for them. "They are in sheet protectors in a file folder and they were laying on the island in the kitchen" I told everyone. The unsuccessful searchers insisted that nothing was thrown away! So yesterday I picked up a random pile of folders in the basement (where my business was) and there was the recipe folder, where all folders belong. Now if I can just translate that logic to a quilt top and the sewing machine....

There are clothes in my closet that I don't recognize. This is either a testament to chemo brain or my lack of interest in fashion. The clothes I have seem to be 80% brown. Brown is a fine color on me, and perhaps a good base color to build around, but 80% seems like overkill in a wardrobe.

I went to the grocery store by myself for the first time this afternoon. I found everything I wanted which would be counted a successful trip. But it was more tiring than I expected.

Tonight, Chinese in front of the television with Peggy.

~Cathi

On the up side

2009-11-29T21:48:00.009-06:00

Up on the housetop click, click, click.

Down through the chimney with good St. Nick.

Today I used my new energy to decorate for Christmas. Debbie called this morning and said "I want to come up and take you shopping or help you decorate or whatever." I jumped on that offer and we hauled out the holly. Here we are in front of our handiwork (actually mostly Debbie's handiwork.)

This evening I still feel good, not at all worn out like I would have before 7-11 (July 11, 2008 when I went in the hospital.) I am making use of the continuing high counts. The only thing that bothers me is the tingling neuropathy in my feet. I have managed it so far by changing shoes and socks, but Mom suggested vitamin B complex this week and perhaps I noticed a difference today.

Dad woke me up this morning with a Starbucks and I roused up and went downstairs to find my cousins sitting in the family room. Ha ha. They were supposed to stop by and eat lunch with me, but decided to drive all night from Cincinnati for some reason. So I had a great visit with Carol, Roger and Brian, then I fixed their lunch for Debbie. Thank goodness Dad came over--no telling how late I would have slept.

Yesterday I took niece Caroline shopping for her bedroom. She is a young artist (12) with a surprisingly thorough eye for home decor. We decided on a bedspread from the store, but opted for curtains found on-line. We walked through several stores including Bed, Bath & Beyond before my feet told me to give them a break. I had a great time with her and I held up well.

So, to the clinic tomorrow for new drugs and ideas. But tonight, retiring with the Sunday crossword.

~Cathi