Monday, August 13, 2018

What a waste of time and resources

I was at Sloan Kettering last week, getting a CT scan after 3 months of chemotherapy.  This was a rough round of chemo and I dropped 17 pounds in 3 months despite exercising very little.  To be honest, a lot of the lost weight was probably muscle mass.  I am really struggling in the gym these days, from both a strength and an aerobic perspective.  I honestly think my fitness right now might be the worst it's been since 1998.

So, after all of those side effects, at least I knew I'd been taking a chemo that has worked for me in the past and I was optimistic that I'd get good news.  Regretfully, my optimism was unfounded, and the tumors continued to grow right through the chemo.

I have four tumors right now, and three of them grew.  Two of them are in a spot that is tough to operate, because it would require an extensive resection of my liver, and it would require a liver specialist as a second surgeon.  My surgeon was not crazy about that option.

The chemo that I could try next doesn't have a great success rate.  Clinical trials would require me to be in NYC one day every other week - something I can't pull off right now.

But, my surgeon, remembering the good success I had with high dose Image Guided Radiation Therapy (IGRT), suggested we try that again for the two tumors near my liver.  The radiation oncologist agreed that this makes sense, so that is the next treatment for me.

The bad thing is that only 2 of my 4 tumors will be targeted, although one of the tumors that won't be targeted is well differentiated, small and growing very slowly.  But, the radiation will not go after one of the other major tumors, meaning I might need surgery after radiation.

The bosses here at work are being supportive, but I know they aren't really happy.  They would prefer to have me in the office full time rather than being out getting treatments.  For this next treatment, I have a consult with the radiation oncologist next week in NYC, then a day to fit a mold around my body to hold me in place during radiation, and then finally, five straight days of treatment.  I'll need to be out of the office for all of those days, although I hope to work from NYC during the radiation itself.

I'm afraid of what my travel costs are going to be as well.  Finances are pretty tight right now and the cost of a week in NYC, plus the train for 3 trips to the city will be expensive.  I'll do my best to figure it out, but things are going to be tight for a while.

So, after three months of a rough chemo, the news wasn't good.  But, the doctors have a plan and I'm going to listen to them and continue with the treatment.  The side effects from the radiation aren't great, but they are less intense than chemo.  It's mostly nausea and fatigue that I'll have to deal with.

I was looking forward to the arrival of fall and hopefully some rain so I could get out fly fishing again.  I've hardly fished at all this year due to the high temperatures and the drought we've been dealing with, and now, by the time conditions improve, I'll be dealing with the side effects from radiation.

My next scan will be in late November, and that will determine whether or not I can teach skiing this coming winter.