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
Friday, December 31, 2010
Thursday, December 30, 2010
Thurs, 12.30 - Transitioning to Heaven
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. :)
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. :)
Tuesday, December 28, 2010
Tues, 12.28 - Tradeoffs
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.
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.
Sunday, December 26, 2010
Sun, 12.26 - Day after Christmas
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.
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.
Thursday, December 23, 2010
Thurs, 12.23 - Pre-Christmas Post
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.
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.
Monday, December 20, 2010
Mon, 12.20 - Palliative Care Begins
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.
Saturday, December 18, 2010
Sat, 12.18
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.
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.
Wednesday, December 15, 2010
Tues, 12.14 - Family Meeting
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.
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.
Monday, November 29, 2010
Thanksgiving commotion
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
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
Saturday, November 20, 2010
Slight change on the course
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
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
Wednesday, November 17, 2010
more Dang
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
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
Friday, November 12, 2010
Three YIPPEES and a Dang!
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
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
Friday, November 5, 2010
Pep talk at the clinic
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
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
Wednesday, November 3, 2010
The Very Latest!
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
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
Monday, November 1, 2010
Blood Sugar Seesaw
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
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
Friday, October 29, 2010
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
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
Saturday, October 23, 2010
Another focus shift
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
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
Sunday, October 17, 2010
Home in the zone
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
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
Wednesday, October 13, 2010
blog update
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
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
Thursday, October 7, 2010
Muscling through
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.
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.
Tuesday, October 5, 2010
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!
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!
Friday, October 1, 2010
Grallace & Womit
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!!
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!!
Monday, September 27, 2010
Womit, or not
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.
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
Thursday, September 23, 2010
Reality is
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
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
Wednesday, September 22, 2010
Travel Detour
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.
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.
Monday, September 20, 2010
Courage to Travel
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
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
Wednesday, September 15, 2010
But where to now - Home?
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.
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, September 12, 2010
Sunday
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 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
Thursday, September 9, 2010
"I got you into this...."
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.
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!"
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!"
Monday, September 6, 2010
Unit change
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
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
Thursday, September 2, 2010
The Big Green "N"
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.
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!
Sunday, August 29, 2010
Another day at the spa
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.
Friday, August 27, 2010
To the Hospital we go
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.
Wednesday, August 25, 2010
"I am not a Pollyanna." Joseph McGuirk
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.
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.
Wednesday, August 18, 2010
A beutiful World
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.
Monday, August 16, 2010
"Mondayness" is a good description
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.
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.
Saturday, August 14, 2010
Eyes Wide Open
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!
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!
Friday, August 13, 2010
Being Perky
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!
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!
Tuesday, August 10, 2010
Crosswords puzzles and Disappointments
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!
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!
Sunday, August 8, 2010
WBC-check! Fevers-check! Next; Home, James??
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!
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!
Thursday, August 5, 2010
Almost like home
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.
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.
Saturday, July 31, 2010
Still Home sorta
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.
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.
Wednesday, July 28, 2010
There's no place like home
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.
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.
Tuesday, July 27, 2010
A Day Hanging with my girl Robin
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?'
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?'
Sunday, July 25, 2010
Another Day, Another plan
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.
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.
Saturday, July 24, 2010
Not another boring Post
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.
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.
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