TV and Travel

The days since my last post have either been very slow, boring, and painful or hectic and crazy.  The former were due to severe pelvic pain and constipation where my mobility was greatly reduced and I was essentially restrained to my apartment for most of the day.  Both have been largely resolved with more and better medication.  It's been pretty bizarre how these things pop up since if it's not one side effect then another shows up.  For instance, I started out having terrible back pain which carried on for months, but it hasn't bothered me much at all for a few months now.  The differences from day to day or even morning to night can be huge too.  Nausea, appetite, pain, mobility, bowel function...it's all a crap shoot.  

The hectic days were when I was bouncing around the hospital.  The hospital visits were instigated by my pain leading to a variety of tests/scans.  I had a PET and MRI to see if my cancer was progressing more rapidly than expected.  Some spots were stable, but others were growing fairly rapidly.  The metastatic tumors in my lower lung are still on the small side, but they got substantially bigger.  The MRI showed that the majority of my pelvic bone marrow has been replaced by cancer except for the region where I got radiated.  The docs figured the pressure caused by the cancer was causing my pain.  They put me on fentanyl patches and gave me an epidural steriod injection which has been helping considerably with the pain.  

The strangest day is when I got contacted by a CNN producer around noon and ended up being interviewed by Piers Morgan later that night.  One of my college friends, Amanda Yanchury, tweeted about how the NIH wasn't able to take any more clinical trial patients and specifically referenced me.  Somehow, the producer came across her tweet in the social media universe and decided I would be a good story to tell.  After a lengthy and emotional phone interview, I wasn't sure if I could be coherent on TV and make it through the interview.  I was convinced to go on the show after thinking about it a lot and the support of Anna, Van Tine, and several others.  The interview was a lot easier and shorter than expected, and I'm very happy that Dr. Van Tine was there with me to help answer questions and take some of the pressure off me.  Hopefully my interview helped put a face on some of consequences of the shutdown and help other patients out there like me.  I wish that they can be as fortunate as me in getting into their proposed clinical trials.  (it's baffling and repulsive how the bullshit of national politics can affect the life and death decisions between doctors and their patients).  

But luckily enough, I was somehow able to get into my trial anyway in the face of this obstacle.  This is almost exclusively due to the hard and tireless work of Dr. Van Tine.  I'm not sure how he works his magic, but I suspect he might have a little elf in his family tree.  I was talking to him today to make sure everything is set for me to head out, and we decided that it was about meant to be.  For instance, on Friday I was supposed to get a shot to start the process of bone marrow collection.  However, it accidentally got canceled along with the chemo dose, so I had to wait an hour for the confusion to be figured out and the drug to be brought up.  The bone marrow transplant plan got tossed to the curb once Brian texted me to say "NIH on the phone, don't get shot".  This was about 5 minutes before the nurses brought me back to get the shot which would have prevented me from starting the trial this week.  More importantly, I am thankful for Brian's foresight to start the process of getting me started paperwork wise in the trial over a month ago.  

Anna and I are flying out tomorrow morning for D.C. en route to the NIH in Bethesda.  I will get a variety of tests and scans on Thursday, and I believe I will start treatment on Friday.  Treatment consists of an IV drip into my port of the experimental drug which has been shown to indirectly but effectively inhibiting the mutated protein driving my cancer.  Treatment will be for 6 hours at a time over 7 days which is pretty similar to my previous treatments.  However, I'm told the side effects associated with this drug are pretty minimal so I should be feeling pretty good while I'm there.  I'll be staying at the Children's Inn Wednesday and Thursday nights which is essentially a free cancer kid motel.  From then on, I'll be an inpatient and will be staying/eating/etc in the hospital.  The trip has been made a lot less worriesome by CJ's Journey who set us up with plane tickets and a generous supply of travel funds today.  Brian thinks that I should start feeling a difference in the first month on whether the trial is working for me or not.  I'm feeling really good today (at least compared to the past two weeks) so hopefully this starts a streak that the trial keeps going.