The Treatment Update

For those interested, the final diagnosis is Undifferentiated AML, here's a link to some of the info.

http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hematology-oncology/acute-myelogenous-leukemia/

Treatment was to begin today, however, on Monday night I began to run a fever and headed to the ER.  I was admitted and figured that no matter what, I was in for the long haul.  Good assumption.

The first order of business is to get rid of the infection.  Cultures will be back tonight to determine if I need more time before I am up to starting the chemo.  No word yet, but if its OK, I will start chemo on Thursday/Friday AM.  Believe it or not, I want this to start (I think I am getting on a couple nerves).

Once all of the consultations were completed (and all agreed), I was asked to participate in using an experimental drug in addition to the standard chemo drugs.  This would be part of a clinical trial and I may or may not end up getting the actual drug.  In clinical trials, 50% of the patients get a placebo and the other 50% get the actual drug (midostaurin).  The trial last for 18 months and is an "add on" in pill form.  I have full opportunity to stop at any time should I not want to participate, but my thought process is that I'd like every opportunity to A) gain the potential benefits and B) thought that if others will benefit, why not?  The side effects listed appear to be very similar to chemo, so I don't feel as if there is a whole lot of risk (but there always is some).

The best part (sarcasm alert) of participating is that they needed another bone marrow biopsy, and that took place this morning.  If you are keeping score, that's three of them in three weeks.  This mornings biopsy went well, and if I had to rank, it was the best so far.  I think the nurse who did mine at UofM last week took the whole Ohio State fan thing a bit personally, as it hurt the most.  Maybe I'm just getting use to getting needles shoved everywhere.

Back to Tuesday... I think my Dr. noticed that I can be a bit high strung or irritated at times.  We hadn't had the best experience with the ER the night before and I let them know how we felt.  As well, I think I may have been irritated by the horrendous cable channel lineup and/or the poor TV and started to let people know it in an unspoken way.  These things can be communicated non-verbally, I'm told.  I was offered a tranquilizer to calm my nerves.  I declined because I thought my nerves were fine (and mostly irritated that someone thought they weren't) For the balance of the afternoon I read about the clinical trial and pretended to not be irritated.

Later in the evening, watching the Reds game, the overnight nurse and I were discussing what I might want/need and I think she was asked to reiterate that I had some Xanax left for me if I wanted it.  I found it fairly humorous at that point and declined.  The Reds game was fantastic, because I can watch on my computer, but anything on the TV really was unwatchable.  This thing is circa 1990's.

I got essentially little sleep, but when I did, I apparently snored decently as the nurse mentioned it in the morning.  But, I was up by 5:30 and walking the halls looking for coffee.  No one on the night shift drinks coffee!  Annoyed again, I must have made an impression, because someone purchased a cup of Seattle's Best for me and delivered it to me around 6 ish.  We are purchasing a coffee maker.  Around 7:30 the Dr. arrives with a couple other of the fellows and a nurse or 2.  Nothing like a crowd.  We're chatting and its that awkward "get to know you stuff," which most of you know is right up my alley.  I'm fine with the Dr. and like him a ton, but all the others are just kinda "there."  If I could have excused myself, I would have, but where the hell was I going to go, I had a marrow biopsy coming up in a few minutes.  So, I look up and say, "you guys are making me nervous, is there something I need to know?"  The answer was no, we were all just waiting for the biopsy cart.  The Dr. had everyone leave.


Side note for Blaki (my uncle Jim the surgeon)...  I think you'd like this guy.  He was filling out some paperwork as we continued to wait and was over by the window.  From the angle I was looking, he had the white coat, and facing away from me, I swore it was you.  I'm not saying the bald top of his head had anything to do with it, but it reminded me of you getting home when we were in Georgia and us getting ready for an evening of food, a cigar and a couple scotch's (of course it wasn't an "on call" night).


The biopsy gets completed and we talked for a few minutes.  Within 10 minutes of him leaving, the nurse arrives and has me take the Xanax ordered by the Dr.  He must have been convinced that the Xanex was needed and I was going to take it...


I pretty much had this entry completed and within a 1/2 an hour, I couldn't type anymore, so I slept for about 4 straight.

Maybe I am a bit high strung.


Last, how about them Reds, 7 games up and the Cuban Missile has arrived.  Look out Braves fans...

The Cuban Missile