September 23, 2019 - Drug Overdose Not Recommended

Since my last blog it has been quite an adventure, mostly in the hospital. 

On Saturday Setp 7 I woke up around 5am not feeling very well. I took my temp and it was 103.6 so I told Alan we needed to go immediately to the hospital. 

Once there they couldnt find anything immediately wrong with me. My temp came down a bit (but still fever), they did urine, stool, and blood culture samples, and a chest xray didnt show anything in my lungs. 

By Monday 9/9 they still hadnt figured out what was wrong with me. I was still spiking high fevers despite being on antibiotics and all the cultures were negative. The infectious disease decided they wanted a chest CT instead of xray. The CT revealed some fluid in my left lung and I also developed an angry cough during the day Monday. 

Official diagnosis : pneumonia. 

For the pneumonia they started me on cough syrup with codeine. 

I'm not sure when the itching started, but at some point I was feeling itchy all over my body. I tried benadryl to no avail. They then put me on atarax for itching which also didnt do much. I was scratching myself so much in my sleep it looked like I had cat scratches up and down my legs. Then came the skin rashes which led to a biopsy on Sunday 9/22. 

During all this time I had several visits with art and music therapy. I was also slated to go home several times, but a new symptom always popped up warranting additional observation. High fever, cellulitis in my ears, etc. 

On Sunday 9/23 I was scheduled to be going home the next day and things were looking good for it. My family came to visit and things were going fine. At some point my nurse came in with my meds which included a new med to help with the itching. I dont remember the exact name of the drug but it is a sister drug of narcan. 

Within a short time I was so sick i had to send my family home. What i thought was a routine trip to the toilet turned into hours of being unable to get up from the toilet because i would just immediately need to go back on. I was shaking and sweating and freezing cold all at once. My eyes were watering but I wasnt crying. I was throwing up bile  sometimes just dry heaving. At some point I noticed me legs and feet were extremely swollen. 

I thought I was dying. I called Alan and told him it was time. I was terrified that I was about to die alone. 

As it turns out this was an interaction of having the narcan related drug with the codeine. Over the course of nearly two weeks enough codeine had built up in my system that the other drug blocking my opiate receptors threw me into a full withdrawal. 

As I write this it is almost 48 hours later. I'm still having chills and sweats and shakes. I'm back to frequent urgent bathroom trips, which had been starting to get under control. 

Now they are saying they want me to go home today. I'm a little afraid but excited to be beyond these four walls. My biggest fears are the continued inability to control my bowels and of getting home just to spike a fever and head right back to the ER. 

I'm summoning all the good juju hoping I can get a few good weeks at home before the leukemia starts to get too bad. Will continue to do my MWF labs and transfusions as needed as long as they continue to work. 

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.