Wednesday, April 30, 2014

How Weird Weird Can Be

Case here. The optimism of two days ago has largely passed, and reality is beginning to set in. I think this is true both for Wanda, our family, as well as the doctors. On Monday, we were told that chemo was probably the best option and generally the atmosphere of the discussion was very upbeat and hopeful. However, the Vanderbilt doctors still needed to look at the results of the bone marrow biopsy and still needed to confer with the neurologist (for head bleeding) and hematologist (for the hemophilia - factor viii inhibitor antibody production). I think these discussions led to a much more stark reality.

From my perspective, the biggest problem is that the biopsy slides seem to show that this AML is caused by a progression from MDS - so, related to her previous disease. Outcomes of people who have MDS-turned-AML are not good. Here's a quick recap of the numbers they cited us - note that these numbers are for a typical MDS-to-AML patient:
  • overall, there's a less than 5% chance of a big picture cure - this is after chemo, remission, lymphocyte infusion, and transplant - lots of hurdles
  • left untreated, she probably has a few weeks - could be more, could be less
  • death from complications due to chemotherapy in the 4 weeks after starting chemo are somewhere around 10%
  • with just chemo, it's expected that the AML would return within 6 months - so the good effects of remission are relatively short-lived
Of course, right now, mom is not a typical patient. She has an active bleed in her head and leg. She has hemophilia caused by the production of factor viii inhibitor antibodies. They would guess that the the these two problems would give her something like a 30% (rather than 10%) chance of having complications from chemo in the first 4 weeks, but it's anyone's guess. She is not typical patient, but instead "challenging" and "unique" (after all, she is still Wanda ;-))

So - what's next? Initially, we thought that we were going to have to choose heavy (induction) chemo or no chemo this morning (Wednesday), but the plan has changed. After consulting with each other, the doctors think the best course of action is to get the hemophilia under control by itself, and then start to work on the AML. In order to do this, they're going to use a common outpatient chemotherapy drug that is usually used to treat lymphoma (Rituxan). The hope is that this will knock out the production of the factor viii inhibitor antibodies and that will then lead to her bleeds being sealed up and healed. Of course, through all of this she will continue to get a good amount of platelet and red blood transfusions. They think they'll wait about 7-10 days after this chemo to ask questions about where we're going next. They see this chemo as relatively low-risk, so mom signed off on it without much thought.

It's anybody's guess as to what treatment Wanda will choose next, but it seems that our conversations are guided by how Wanda wants to spend her time and what the effects of treatment are on quality of life. We all know that Wanda is all about living the good life, and we trust her decisions will be made in a way that supports how she defines Life to be. As the days pass, she has become more lucid and more understandable as the effects of the pressure in the brain start to subside. We've had reasonable conversations with her - you just have to understand that only about 75% of the words she uses are the words she intends. Sometimes she gets stuck on a word and you have to start asking questions to try to figure out what word she is intending to say. While it is frustrating, she still feels like mom. It's maybe a bit unsettling that after spending a bit of time trying to get the right words out and failing, she can say in perfect Wanda intonation and facial expression - "oh come on, Case!" Haha.

Ignoring the prognosis and what is coming next, Kit, Pat, and I had a great day with mom yesterday. She got the EEG stuff removed from her head, took a shower, and was very excited about us brushing her hair. She has proven to have a good appetite for her normal food, but she's also shown a voracious appetite for orange sherbet, which we have an unlimited supply of. As I said, she feels like her normal self. The inability to easily express everything she is thinking may actually be a great thing, because it's meant that we've all been a bit more reflective than maybe we would be otherwise.

Callie, Mike, and Davis will come in town today. Demian (Kit's fiancé) will come in town on Thursday. We'll all be returning home by Sunday except for Callie & Pat, who are going to stay for longer. We've received a tremendous amount of support from friends - food, housing, conversation, swanky hotel rooms - and we are so thankful and think that the cards have meant a lot to her. (Please let us know if you'd like to send one to the hospital - I can provide the address. Just send an email to

There are a few words that mom has been quite fond of using to describe the situation - "crazy" and "weird." It's amazing how many complex thoughts you can express solely through the use of 'crazy' with changing intonation. Perhaps one of the more profound things mom said is that "it's crazy how weird weird can be."

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