I often reflect on my newly upended life as if I’m watching a movie and the main character has cancer… “Oh, this is the part where we find out he has cancer!” … “Then we find out it’s some super rare cancer and he can’t pay his bills” … “Now he’s reconnecting with long lost friends and everyone is rooting for him” … “now he’s going to doctor’s appointments with his partner and looking more ill by the day.” … “and this is the end of the movie when…”
…When you’ve invested so much of yourself into the characters and their struggles that you really hope the director doesn’t let you down. Is this going to be the end that leaves you with a smile on your face, because everything seems to work out great? Does it just end suddenly and leave you hanging? Is there a ridiculous plot twist? Or maybe, they have the guts to tell a story where things don’t always end the way you want them to. But at least you know it’s honest. Maybe they have the guts to show incredible beauty being swallowed up slowly by inevitable tragedy.
I’m starting to think the director of my movie had a lot of guts.
Yesterday, was the long-awaited follow-up appointment with my new team of doctors. Since our last visit with the doctors, I went through another round of tests and scans (see my previous post). And while I was getting poked and prodded they convened at the high council chambers with the Tumor Board. Which consisted of a host of dignitaries including Oncologists, ENTS, surgeons, Doctors, and Captain Tumor himself.
So this was a big appointment and I was happy to be getting more helpful information and I also had this nagging feeling that I was walking to the gallows. We figured there would be some good news, bad news, and a new set of plans moving forward. We were right… Except for the good news part.
I’m past the point of surgery
The cancer is pretty widespread and metastasized from the thyroid, up into my lymph nodes, and down into my mediastinum. The cancerous lymph nodes around my neck are pushing against every wire and waterway including my throat and major vessels like my carotid artery. They’ve noted some suspicious spots in my lungs. Cancer is in my blood. My calcitonin levels (a marker for how the cancer is affecting my thyroid) are very high. A normal calcitonin level would be 10. Anything over 100 is very high. Mine was somewhere around 9,000. Nine-Thousand! My doctor said she had seen higher, but did not say it very convincingly. This high level of calcitonin in my blood is one of the main contributors to my fatigue and constant upset stomach.
Common approaches for treating cancer are surgery and radiation. For me, radiation therapy would be not precise enough to remove the cancer without damage to nearby vessels and important organs. The surgeon said that attempting to surgically remove all of the cancer would be “heroic” and risky at best. It would be 7+ months of recovery and I would have some significant long term problems associated with damage to the vessels moving blood up and down from my head. And after all that –assuming there are no complications– there would only be a 1-2% chance of success in removing the cancer. Insert something funny here, because nothing is jumping to mind. :/
I have a new friend and he’s decided to stay
So if the cancer can’t be removed, then how do I live with it? I have options. Not great options, but I still have options. The best-case scenario is that I can get into a clinical trial where they can give me some fancy new drugs that might (50% chance) shrink the cancer down to a more manageable size, could allow for pinpoint radiation treatment and would enhance my quality of life. I could theoretically extend my life as long as the drug remains effective. 1-2 years, maybe 5 years?
Fun Fact: If I do nothing and let cancer take its course, I would have only a few months before I am past the point of being treatable by current methods available.
If I can get into the clinical trial, the expenses could be fairly low. I am waiting on one more test to come back before we know for sure that my specific cancer qualifies. If I can’t get into the trial, there are some other drugs that I can get that might work but are not available at Walmart. They would cost over $10k a month if insurance doesn’t cover it. And I bet you can guess how confident I am that my insurance will cover it. Not confident at all. But we are going to look into that.
Basically, my goal right now is to find as many ways to extend my life until they come up with a better solution. “Hey mister Elon Musk, could you start working on the nanobots please?”
I’m still in shock and haven’t fully digested this latest round of crazy juice. I have a lot of processing to do and also want to give deep consideration to how my choices affect the quality of my life ahead. I do know that we are not giving up. We’re going to keep focused, keep moving forward, and keep doing whatever that next step is until we have no more steps.
*camera pans across a desert landscape as the last fiery rays of sun sink behind the mountains. Slow fade to black*
This is not the end of the movie.
Checking with current insurance about the eligibility of clinical trials and what drugs are covered. Waiting (5-7 days) for results on my tumor to find out if I qualify for the clinical trial. Waiting (2-3 weeks) on results for my genetics test to find out if my family is at risk. Recalculating my life goals to fit within the next 12 months.