There are a number of things to state here, but fundamentally I want to express to everyone just how beautiful and graceful mom leaving Earth behind was.
At 7 PM on 12.31.10, while writing her obituary I had writer's block. It's a good thing b/c I went to sit beside Mom for inspiration. When I picked up her hand, it was much cooler than normal and I noticed her color had changed similar to the modeling we'd read about. I got Mark, called her parents, several other people she wanted to be present when she passed, and called Hospice since they committed to 24 x 7 care the remainder of the time. I honestly believed she had several hours. However most everyone arrived by 7:30 and at 7:36, she was gone.
Mom leaving was amazing. We had prayed a Hail Mary and Our Father and were there to say goodbye. She did not struggle and ultimately exhaled her last breathe without getting another. Shortly thereafter we popped a bottle of champagne and toasted her new life in honor of her and New Year's Eve. I described it as her last hosted party. So cool.
From there, a number of things happened. The thing I want to share which could not have been more perfect was her physically leaving her house the last time. Funeral home guys had shown up to pick her body up and being someone who has to see everything, I stepped outside to watch her body loaded into the minivan (white - just like hers). I had to laugh. The van which carried her body away had a KState license plate frame - just like the KState stickers on her own van! It could not have been more perfect and was as if she was driving her own van away.
I'll write another post soon which will have more of the information related to her funeral for those that were not able to attend, especially the Prayers for the Faithful and the letter Mark and I wrote for her funeral mass. A sneak preview is that it was an amazing 3 days and I only wish that I had video of it b/c we were all very emotional yet were told numerous times just how beautiful it was...just like she planned it.
Friday, January 14, 2011
Saturday, January 8, 2011
1.8 - Tribute Video from Funeral Receptions
We haven't really collected enough thoughts to write, but there are a few of us family members that will have some pots. In the meantime I wanted to post the video that was shown at mom's funeral receptions and was running at the visitation w/o sound. Her cousin, Gail, put it together after a lot of chats with Mom and some pictures. It's touching and I'd highly recommend a Kleenex!
http://vimeo.com/18416011
http://vimeo.com/18416011
Sunday, January 2, 2011
1.2 - Obituary
Tomorrow's will have a photo, but here's the text from and link to Mom's obituary.
http://www.legacy.com/obituaries/kansascity/obituary.aspx?page=lifestory&pid=147519421
Cathi Snell Maynard went to join our Heavenly Father on December 31, 2010, surrounded by family, after a two and a half year battle with Leukemia. She was born December 30, 1953, in Manhattan, KS, to Virgil and Jane DeVore Snell, and was the oldest of 7 children. She lived each and every day to the fullest and touched everyone who knew her. Her life was full of family, travel, culture, Kansas City Chiefs games, and a love of entertaining that will forever be remembered by those who were fortunate enough to enjoy her events.
Cathi spent her early career in a variety of roles, including one as a legal assistant. She then recognized the computer evolution and in 1989 accepted a position at Shook, Hardy, and Bacon as a Litigation Support Manager in their IT department, bringing her family back to Kansas City. As a single, working parent with two sons, she completed a General Business Bachelors degree from Oklahoma City University during this time. Kansas City and a vast personal and professional network propelled her to a full-time IT career, resulting in her starting her own boutique consulting company focusing on several prominent KC law firms as well as other businesses. She led Network Applications Consulting as President from the early '00s until her death.
Cathi's thirst for adventure was well- documented through pictures, emails, and friends. She traveled all over Europe including a D-Day tour with her Veteran father and uncle. Her adventures also led her through countless campsites, rivers, lakes, and wildlife exposure - most of them with the Boy Scouts of Troop 91 where she mentored many young Scouts. She canoed and hiked the Boundary Waters area of Northern Minnesota, but her greatest achievement among these was Project Cope - a challenging team-building course she completed and was always extremely proud of.
She was preceded in death by grandparents Walter and Margaret Drauden Snell and John and Beatrice Johnson DeVore. She is survived by Son Conor Maynard and wife Annie of Chicago, their children Harrison Bradley and Ella Catherine, Son Mark Maynard of Oklahoma City, Parents Virgil and Jane Devore Snell, siblings Mari Yearout, Janice Schlichting, Lori Offutt, Rhonda Anawalt, Patricia Moore and Walt Snell, Godsons Anthony Snell and Mason Offutt, and many other relatives including 23 nieces and nephews. Visitation will be Tuesday, January 4, from 5-8 p.m. at the McGilley and Hoge Chapel, where the Tribe of Mic-O-Say Memorial Service will be at 6:00 p.m. and the rosary will be prayed at 7:00 p.m. Mass of Christian Burial will be 10:00 a.m. Wednesday, January 5, at Ascension Catholic Church. There will be a reception celebrating her life following. Burial will be Thursday, January 6, in Winfield, KS, at Highland Cemetery. In lieu of flowers, please consider donating on behalf of Cathi Maynard to the Leukemia and Lymphoma Society at 6811 Shawnee Mission Parkway, Shawnee Mission, KS 66202.
http://www.legacy.com/obituaries/kansascity/obituary.aspx?page=lifestory&pid=147519421
Cathi Snell Maynard went to join our Heavenly Father on December 31, 2010, surrounded by family, after a two and a half year battle with Leukemia. She was born December 30, 1953, in Manhattan, KS, to Virgil and Jane DeVore Snell, and was the oldest of 7 children. She lived each and every day to the fullest and touched everyone who knew her. Her life was full of family, travel, culture, Kansas City Chiefs games, and a love of entertaining that will forever be remembered by those who were fortunate enough to enjoy her events.
Cathi spent her early career in a variety of roles, including one as a legal assistant. She then recognized the computer evolution and in 1989 accepted a position at Shook, Hardy, and Bacon as a Litigation Support Manager in their IT department, bringing her family back to Kansas City. As a single, working parent with two sons, she completed a General Business Bachelors degree from Oklahoma City University during this time. Kansas City and a vast personal and professional network propelled her to a full-time IT career, resulting in her starting her own boutique consulting company focusing on several prominent KC law firms as well as other businesses. She led Network Applications Consulting as President from the early '00s until her death.
Cathi's thirst for adventure was well- documented through pictures, emails, and friends. She traveled all over Europe including a D-Day tour with her Veteran father and uncle. Her adventures also led her through countless campsites, rivers, lakes, and wildlife exposure - most of them with the Boy Scouts of Troop 91 where she mentored many young Scouts. She canoed and hiked the Boundary Waters area of Northern Minnesota, but her greatest achievement among these was Project Cope - a challenging team-building course she completed and was always extremely proud of.
She was preceded in death by grandparents Walter and Margaret Drauden Snell and John and Beatrice Johnson DeVore. She is survived by Son Conor Maynard and wife Annie of Chicago, their children Harrison Bradley and Ella Catherine, Son Mark Maynard of Oklahoma City, Parents Virgil and Jane Devore Snell, siblings Mari Yearout, Janice Schlichting, Lori Offutt, Rhonda Anawalt, Patricia Moore and Walt Snell, Godsons Anthony Snell and Mason Offutt, and many other relatives including 23 nieces and nephews. Visitation will be Tuesday, January 4, from 5-8 p.m. at the McGilley and Hoge Chapel, where the Tribe of Mic-O-Say Memorial Service will be at 6:00 p.m. and the rosary will be prayed at 7:00 p.m. Mass of Christian Burial will be 10:00 a.m. Wednesday, January 5, at Ascension Catholic Church. There will be a reception celebrating her life following. Burial will be Thursday, January 6, in Winfield, KS, at Highland Cemetery. In lieu of flowers, please consider donating on behalf of Cathi Maynard to the Leukemia and Lymphoma Society at 6811 Shawnee Mission Parkway, Shawnee Mission, KS 66202.
Saturday, January 1, 2011
1.1 - Funeral Details
Here are the confirmed details for Mom's funeral services. We have the Ark City / Winfield reception location pending, but otherwise are fairly set now. Feel free to use the earlier posted bereavement travel desk. I used them and secured some good flight times, costs, and flexibility (no cost for flight changes), but I know some others got better flight times directly through the airlines. These details will also be in tomorrow's Kansas City Star obituary with the accompanying picture in Monday's paper.
Tues, 1.4
- 5 - 8 PM: Visitation and Rosary at McGilley & Hogue Chapel in Overland Park - 8024 Santa Fe Drive
- 6 PM: The Boy Scouts will perform the Mic-o-say memorial ceremony (all are welcome)
- 7 PM: Rosary
Wed, 1.5
- 10 AM: Funeral at Church of the Ascension (9510 W 127th St)
- Reception following at the church
Thurs, 1.6
- 10 AM: Meeting at Swisher-Taylor funeral home in Winfield (803 Loomis St) for processional to Highland Cemetery
- 10:30 AM: Burial
- Reception following - location TBD
Tues, 1.4
- 5 - 8 PM: Visitation and Rosary at McGilley & Hogue Chapel in Overland Park - 8024 Santa Fe Drive
- 6 PM: The Boy Scouts will perform the Mic-o-say memorial ceremony (all are welcome)
- 7 PM: Rosary
Wed, 1.5
- 10 AM: Funeral at Church of the Ascension (9510 W 127th St)
- Reception following at the church
Thurs, 1.6
- 10 AM: Meeting at Swisher-Taylor funeral home in Winfield (803 Loomis St) for processional to Highland Cemetery
- 10:30 AM: Burial
- Reception following - location TBD
Friday, December 31, 2010
12.31 - A New Life Begins
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
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
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
Subscribe to:
Posts (Atom)
