The plan going forward

I spent Tuesday at Sloan Kettering.  I started the day with a CT scan, but it was barely a scan.  Just my lungs and done with no contrast.  As it turned out, they should have done the full scan.

Next, I visited the radiation oncologist.  His office was unhappy that there had been the mix-up with communications and that I hadn't gotten the go-ahead to do the radiation therapy despite the tumor growth.  The doctor's comments regarding the communication were "It's not that hard".  He said that it's imperative to get the radiation started as soon as possible, while there is still a window to do it.

From there, I had my vitals done and then we waited.  And waited.  We finally got in to see the medical oncologist.  He was still fine with radiation as well, but he was also glad that we had started the chemo when the radiation got delayed.  He wants me to stop the chemo during radiation, because the chemo hasn't been studied in conjunction with radiation.  That reminds me that I need to cancel my next chemo appointment.

The surgical oncologist, who really coordinates my care, was last.  And, we were running out of time to make our train home.  He said that he was fine with doing the proton beam therapy radiation, but he wanted to see a CT scan first.  So, I've got that scan scheduled for next Tuesday morning.  So, we seemingly went 3 for 3, with everyone in favor of still doing the proton beam therapy.

I got home late on Tuesday night and Wednesday morning included a big presentation at work.  I'm happy to say that the presentation went well, at least in my opinion.

From there, I headed to the hospital for blood work and chemo.  I had my port accessed and blood drawn first.  From there, it was a 45 minute wait for a chair in the infusion bay.  The first thing the nurse said to me when I got to the infusion bay was "Do you know what your hemoglobin is?"  I told her no, but I assumed from her question that it was low.  It had been 9.9 only 9 days ago and it was down to 7.6 this week.  They immediately began scheduling me for a blood transfusion.

The chemo went pretty well and I was back at work pretty fast.  Yesterday, I spent another five hours at the hospital, getting two units of blood.  I was hoping that the blood would make me feel better, but it hasn't.  I'm guessing that it's the side effects of the chemo that are still keeping me feeling so tired.

I still have no appetite.  I told my wife earlier today that I feel like I've spent my entire life looking forward to my next meal.  Right now, I feel that if I just decided to stop eating, my body wouldn't care at all.  My body would happily let me starve to death.  It's no fun trying to force yourself to eat every meal, but that's where I am.  Nothing tastes good, and I just have no appetite.  It's honestly scary, because it feels like my body is quitting on me.  Having an appetite is essential to survival, and I don't have one.

So now, some more waiting.  The CT scan is Tuesday morning.  Then, it will take a week to get it sent to Sloan Kettering.  This time, I expect a rapid turnaround on the read, and permission to get to radiation treatments.  Then, I have to start scheduling appointments at ProCure in NJ, the site for my radiation therapy.