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After being discharged from my 46 night hospital stay on January 25 I spent some time struggling to regain my strength. We made another trip to Houston to once again assess my eligibility for transplant if I was able to get back in remission. The results of that ended up being that I was not quite in remission resulting in needing to start another round of the Decitibine+venetoclax but this time it would be done outpatient.
Upon learning on Thursday (2/14) that I would be starting chemo again Monday (2/18) i told Alan that I wanted to do something really fun over the weekend. We ended up doing a really crazy thing and going to Orlando. We left late Thursday night and drove a rental car all night/almost all day Friday. Another crazy 36 hours of no sleeping. We got to our hotel and slept hard before going to Universal Studios on Saturday. The main reason for this trip was to go to the Harry Potter attraction. It was a tough day because I did not have theme park level stamina and I also had some digestive issues throughout the day. In retrospect we should have rented the motorized scooter cart in order to have a more enjoyable experience that day but overall I really enjoyed it and was thankful to have gotten the opportunity to finally walk diagon alley and hogsmeade and ride the Hogwarts Express. The next day we decided to go to Epcot where we were smarter and rented the electric scooter for me to ride around in. Things went much better but we definitely could have done with a few more hours to explore all the countries. Monday morning we flew home super early to begin my 3rd round of chemo outpatient at UofM that same day.
Feb 4:
Today was a day of rollercoaster emotions.
Started out waking up feeling really good and folded/sorted several very neglected baskets of laundry.
During all of this I was taking back and forth calls from UofM and MD Anderson and finally concluding that I would fly to Houston for an appointment with my doctor there to determine my fitness for transplant and have the biopsy done there. If all goes well they would plan to schedule me and my donor back either the 18th or 25th to start the process for the transplant.
Then, I went at 3pm to have my routine blood draw done. The results were not encouraging. My neutrophils and hemoglobin both dropped since Friday; not good since they are supposed to be at a point of rising on their own now. My hemoglobin dropped so far that I needed to have a transfusion tonight (which I only just got home from).
We can't be sure what this means without the biopsy being done, but I went from feeling this morning like everything was finally falling in place for the transplant to feeling this afternoon like I just keep pumping my body full of all this chemo with no end in sight.
I am sick of living like this, unable to make any plans for the future. Pumping my body full of chemicals that keep making me sicker. I just want to be in remission, get my transplant, recover and move on. I know it wont be that simple to just bounce back after the transplant but I need a break and some good news somewhere.
Please think good thoughts for us as we prepare to travel to Houston for appointments all morning next Monday and for good results from the bone marrow biopsy that I will have while there.
Feb 12:
At the airport waiting for our plane to board. Somehow our "randomly assigned" seats ended up being in row 1 for the "big front seats" aka as close to first class as you can get for it being Spirit. So that is exciting because we dont have to deal with a 3rd person in our row and extra leg room.
For those wondering about how things went at MD Anderson, we didn't get any real update as for the timing of the transplant yet. The greatest thing that was accomplished this trip was that after seeing me in person and talking about the progress I've made toward recovery since my hospital discharge, Dr. Alousi is still agreeable to doing the transplant.
The big question mark at this time is still whether or not this last round of chemo put me into remission. I had my bone marrow biopsy done yesterday morning, and we expect results sometime between Wednesday and the end of the week.
If the results show no disease we could be heading back to Houston as soon as next week. They unfortunately won't discuss exact timing until those results are back so we are still stuck in a waiting game.
Thanks to everyone for your texts, comments, likes, etc. We appreciate all the support as we go through this stressful period.
Feb 15:
Trying to see the sun through the clouds today. Not going to lie - it's really difficult.
Dr. Alousi from MD Anderson called me Thursday with the results of my bone marrow biopsy: there is still 1% leukemia left in my marrow. Because of this, they will not proceed with the transplant at this time.
He said that because of how aggressive my leukemia is, if they were to do the transplant while I still have this 1% disease left there is an extremely high likelihood that the leukemia would just come back in the donor cells. I mean, there is already a pretty high chance of that (around 70%) because of my mutation type, but this would make it even more likely.
I also happened to have a follow up appointment with Dr. Bixby from UofM yesterday. At the time of my appointment we hadn't yet heard from MDA and so he wanted to come up with a contingency plan just in case the biopsy didn't show a complete remission.
The decision was that I will do another cycle of the same chemo that I had in November and December, but this time I will only do 5 days of IV Decitibine instead of 10 and I will do them out patient instead of being admitted to the hospital. I will still do 21 days of the Venetoclax chemo pill.
After this we will wait for my counts to recover again and then do another biopsy. This will probably happen in about 4-6 weeks from now. If the chemo is able to knock out that last 1% then MD Anderson will reconsider my eligibility for transplant at that time.
The good news is that I did have a response to the chemo to give me the reduction from 10% to 1%, but like I said trying to focus on that sunshine through the clouds right now is very difficult.
