September 3, 2019 - Beginning the End

Well another month has gone by already.

I'm not going to lie, August has been an extremely difficult and trying month. The side effects, whether directly or indirectly related to treatment or disease have continued to amplify.

One thing I am thankful for is that my joint pain did subside this month and I was able to fully wean myself from the oxycodone that i was taking. This in itself was a difficult process as I had severe withdrawal symptoms even after only about 5 weeks on the medication.

The new and more persistent side effects that I've been battling this month are mouth sores, nausea, and diarrhea. All of which are making it hard to eat or drink and all combined is leading to dehydration and malnutrition. I've lost another 17lbs this month which to my doctor is very disappointing.

At the risk of TMI but in the spirit of sharing my entire experience, because of the diarrhea that I have been having I find it difficult to leave the house for much other than blood draw and transfusion appointments. When I get the sudden urge to go I need to be able to find a toilet immediately. When I do leave the house I'm having to wear depends for fear of having an accident.

On most days I'm lucky to even choke my pills down, the sores in my mouth and throat are so bad that it hurts to swallow water, let alone pills or food. Chewing food is another thing all together. Most days if I eat at all it will be a small bowl of soggy cereal, a few bites from a stouffers mac and cheese, or maybe some pudding or jello. Those are just about the only things I have been able to tolerate without getting sick. I tried drinking a protein shake but i threw up later that same day and havent been able to clear the negative association from my head to try it again.

On Wednesday August 28 I had my monthly appointment with my doctor to check in on all my side effects and how I'm doing and feeling and also to get a bone marrow biopsy. Dr. Bixby set a pretty high threshold for me to continue on the trial. He said the blasts need to come in at around 5-10% or less (down from the 31% of last month) in order for him to feel comfortable allowing me to continue on this trial.

He said that at this point he would not allow me to do the MYLOTARG or any other chemo either, as these would just further weaken me and he believes there are single digit possibilities of another chemo even working. Essentially if the blasts from the bone marrow biopsy I was to have done that day were not within range he is recommending that I enter hospice care.

So that brings us to today. Heather, the physician assistant who does my biopsies called at around 4pm. She said that because of all the biopsies I've had done, the sample from my most recent biopsy was considered incomplete/inconclusive. However the blood smear from that same day showed 14% leukemia, and it would be estimated that the biopsy number is higher than that. 

They are offering to attempt another biopsy if I want to, but are overall recommending that I stop treatment. They will support me with transfusions of blood to keep my oxygen flowing and platelets to keep me from bleeding for as long as these will work. But as the disease progresses these will become less effective. I am meeting with a palliative care doctor next week and between all of these things we will work to keep me comfortable and pain free. 

We don't know how long the progression will take. It could be months, it's more likely weeks. When I relapsed last year I wrote that I didnt know if I would be here for Christmas. This year I can say with almost certainty that I wont. 

Please be patient and understanding if you reach out and I dont answer right away. While I would obviously love to see and hear from as many people as possible my main focus is going to be on my husband and my family at this time.