*Backdated Post*
*Some content copied from Facebook Posts*
Things got crazy after we got back from Houston and readmitted to UofM to start the Decitibine+Venetoclax chemo.
This chemo was intended to be 10 days of IV decitibine and 21 days of the pill venetoclax followed by a 1 week break. After the 10 days IV chemo I was sent home and ended up with a fever only 2 days later and readmitted. After the infection cleared I was only home about 2 weeks before I was readmitted for round 2 and what ended up being a ridiculously long 46 night stay in the hospital including some time in the ICU.
During these hospital stays I had many visitors, including my friends Cassie and Emily who I have known for 25+years. My family brought in a full feast for Thanksgiving and on Christmas Day I was able to get a day pass to go spend time at my inlaws for brunch and spend time with my family. I had many more days with the art therapist who was instrumental in keeping my sanity while I was there.
During this time I also gained a new nephew, Harrison, who was born the day after Thanksgiving. And lost a dear friend, Kate, whose time living with metastatic breast cancer had come to an end.
Here are some Facebook posts during that time:
Nov 15:
Today is day 10/10 of my Decitibine chemo infusion, and day 10/21 of my Venetoclax chemo pills. Since I can currently make it 2 days between transfusions, they are sending me home today, to finish my last 11 days of Venetoclax pills. As long as I don't get a fever during this time I will be able to remain home until around Dec 4, when I will get my next biopsy.
Between now and then I will need to get my blood levels checked every couple days and get blood or platelet transfusions as needed.
So that Alan can get a little bit of a break, I'm asking if there is anyone who is able to pick me up in Royal Oak and drive me to appointments in Ann Arbor on any of the following days/times. We would need to leave my house approximately one hour before the listed time. The total time commitment will depending on whether I need a transfusion or not. If I do need a transfusion you dont necessarily have to sit with me all day. I will honestly probably sleep most of the time.
Dec 15:
A recap on the past couple weeks and next steps...
After first being discharged at the end of my decitibine I got a fever only 2 days later and was back in the hospital for about 10 days to manage a recurrent cellulitis infection.
Went home on the 27th on pill antibiotics. Had 3 or more appointments each week to check blood levels and get transfusions which I ended up needing multiple times. These require sitting at the hospital transfusion blood for around 60 mins per bag of platelets and 3+ hrs per bag of red blood.
Felt the sickest I have probably ever felt while home for about 2 weeks. Intense nausea, vomiting, diarrhea, and complete lack of appetite. We are talking I only choked down half a taco when I normally would have 3 or more.
Had a bone marrow biopsy Dec 3 and a PET Scan on Dec 10.
The PET Scan shows no change in my neuroendocrine tumors but shows uptake throughout my bone marrow. Both Dr. Philip and Dr. Bixby said that is likely my marrow changing from the chemo.
The biopsy showed a decrease in leukemic blast cells from 53% to 10%, so it worked well enough to give it a second shot but not well enough to qualify me for transplant, which would ideally be 0 l, but at least under 2%.
My doctor was planning to send me home on a pager list for when a room would be ready in 24-48 hours and someone would call me to come back and start chemo. But then I threw up in his office and he said he wanted to get my stomach issues under control before starting chemo, so I had to be admitted through the ER which was kind of a disaster. I was forced to sit in the ER waiting room with all the very sick people until there was an ER Room open
So the plan now is another cycle just like the last. I will finish my IV Decitibine on Dec 23 and my pill Venetoclax on Jan 4. I will probably have a biopsy around the 11 with results around the 23. If the blasts have gotten to the acceptable level at that time, then its finally off to Houston
Jan 12:
Updates:
I haven't had the energy to do most basic living activities, let alone write an update the past few weeks. What sometimes feels like days has turned into over a month in the hospital with no sort of end in sight. I was surprised to learn it was already time for my 28 day biopsy (which I had been home for last time) on Thursday.
Things have been touch and go, and I spend a lot of my time sleeping. For the most part I cant respond to individual comments and texts, I do read them I just dont have the energy at this time to always respond. I've had some visitors but keeping it to immediate family and close friends. If you do visit, dont be offended if I'm really groggy and just kind of foggy and barely here mentally when you come.
I had to do a stint in the ICU over my birthday due to a likely GI Bleed. The bleeding stopped on it's own and I got stepped back down to a regular unit but then i was bleeding again yesterday and almost had to go back.
I have little to no appetite which is one of the most problematic issues right now because I'm not getting much nutrition orally. I'm getting IV supplement for magnesium, potassium, and other things but it's all day every day and it is exhausting and the levels aren't holding.
More problematic is that some of my blood levels are also starting to not hold which could mean I've developed antibodies against the blood and platelets I've been getting. If this is the case I will have to get special blood. I havent asked yet what this could mean for my compatibility with my donor for transplant.
Other issues are these random clusters of skin cells that are scattered over my body that have been biopsied and a hematoma in my rectal area making it so I cant even go to the bathroom alone because I needed dressing changes where they biopsied that.
We wont know results of anything, biopsies or testing until later next week.
