January 8, 2011

glorious day

    I woke up, ate some pigs-in-a-blanket while watching and laughing at South Park.  I then went back to bed and slept until nearly noon.  After a lunch of consisting of my mom's leftover turkey toast, I went to tinker in my yard.  Took down the Christmas lights (better late than never) and drank some beer while watching the sun set listening to the sparrows and warblers feed at my bird feeders.  A very uneventful day.  It was a perfect decompression from the week.
    Three days at MD Anderson always leaves me feeling drained.  It's not a tiredness in a typical sense of the word.  It's a weariness that goes down past the bone right to my soul.  A few weeks back, my brother said that he started having a persisent headache that wouldn't go away.  Headaches were never an issue before with him.  He was insistent it had to do with the way he slept.  But in a cancer patient, any new ache or pain is scary.  The brain has no pain receptors of it's own so if pain is felt then that means a tumor is large enough to begin compressing parts of the brain.  At that point, it's almost too late to do anything about it.  So it was with great joy that his head/neck CT scan came back clean.  After the Fellow completely jacked our family around by the emotional nose ring (not even going to go into details), the attending oncologist gave more good news.  The primary tumor only grew about 2 mm.  Liver, kidneys, adrenals, lungs, great vessels were all clear.  The second tumor right next to the primary didn't grow at all.
     Aside from a great relief, I walked out with two threads.  First, I needed to learn about PI3K inhibitors.  A literature review yielded little information (companies rarely publish anything until they have some good data to present which is too early in this case).  So emails went out to colleagues I knew at the pharma company developing the therapy and to anyone who might know anything about this class of drugs.  The next step for my brother is an investigational therapy in the context of a clinical trial.  It's pretty simple really.  He takes the investigational therapy (a pill so no long nights in the chemo ward) and then gets scans periodically.  If his tumor stays the same or shrinks, he keeps taking the therapy indefinitely.  If it grows or he has horrific side effects, he abandons the therapy and goes on to another therapy.  Having multiple options is one of the major advantages of being at MD Anderson.
    The other thought stems from a conversation I had my brother last August.  He asked me what happens to the tumors when the chemo is stopped.  At the time, I had nothing to offer other than 'alternative therapies' involving supplements, nutrition, lifestyle, etc.  To be honest, I had little hope that it'd make a difference against a poorly differentiated squamous cell tumor.  Average lifespan is about 7 months from diagnosis.  The deck seemed stacked against him.  Of course I told no one of that at the time.  How could I?  So I kept it to myself and kept combing the literature for anything remotely promising.  But again, I had little hope.  Actually, I had no hope.  I'm not sure what one calls fighting on in the absence of any hope, but now....here we are after 3 consecutive scans with no chemo and the primary has remained mostly stable.  It's starting to make me a very devout believer that all those other things he is doing actually do matter.  So I guess now I have an answer to my brother's question from last Augst.  Keep doing what you're doing and add what we think will help.  Believe that it makes a difference.  It already has.


Abe said...

I would also add to the formula another ingredient along with the diet and Josh's personal determination. From day one, people from Canada ,England, India, and all over these United States have been praying for Josh, Anna and, Kate and Ethan, and all of us pretty much on a regular basis. I believe this is an essential ingredient along with all the others you have listed. Any equation must include all contributions. Love Dad

Isaac said...

Absolutely. I did not mean to imply the other side of the equation was negligible. In fact, I think it at least as important (if not more so), than diet. It's just that those tangible variables like diet are easier to study. The will to live, while elusive and difficult to quantify in any study, plays a monumental role. Social support is a bit easier to study but still very difficult (what may constitute as supportive to one person may be counter productive to another).