Not the Most Fun Rollercoaster… but I’ll Take It!
What a week I had last week! Taken overall it was a GREAT week. It was extremely hectic and not without some blemishes towards the end, but overall… it was a great week. The type of week that doesn’t happen often enough in the lives of advanced stage, Stage IV cancer patients (and associates caregivers and families) once the disease enters into late stage.
What made it so great? While I had mentioned before that we are essentially fighting a 2-front war right now. 1.) The near-term life-threatening explosion of aggressive disease in my liver and 2.) The intense (debilitating/handicapping) pain caused by (we believe) a 6 cm lymph node mass in my back. The liver issue will literally kill me and the back issue is starting to make my life here on Earth somewhat questionable in terms of living – housebound, largely confined to bed, unable to be much of a Father to my kids, constant pain… In each of their own ways, BOTH issues are equally important in my eyes in terms of prioritization! I want to live fervently but I also want to be able to enjoy the basics of life too with my family! I feel that both are essential to “LIFE”. Tumors elsewhere in my body (e.g. my lungs are neither near-term life threatening nor causing symptoms right now – so they have been triaged to the sidelines.
War Front One – The large lymph node mass causing my back pain
I tolerated well & fully finished the SBRT focused radiation on my 6cm lymph node mass we think is causing my pain – I hope to see a reduction of pain in the near future as necrotic (dead) tissue is cleared… Although we are still in potential psychosomatic/placebo effect land… I cautiously think it is starting to feel better! 🙂
War Front Two – The near-term life-threatening aggressive liver tumors
The liver “Selective Internal Radiation Therapy (Y90-SIRT)” dress rehearsal/mapping procedure went very well and was a complete success! All systems are a go for a Y90-SIRT procedure to my right liver lobe on June 1st! It was an interesting procedure to say the least. They entered my arterial system via artery in my right groin. I was awake (but sedated) for the entire procedure so I could see what they were doing on big TV screens. I dutifully followed instructions to move how they wanted me to move during the procedure (why I needed to be awake) and the 2-3 hour procedure flew by like a dream. I was in post-op for 4 hours and as soon as I was discharged I quickly left that hospital and went up to the Cancer Center to have my final dose of radioactivity to my back (War Front 1) – a very hectic day indeed!!
While all of that was happening on the medical front, my advocacy continued…
My curated MSS-CRC clinical trial app’s release went incredibly smoothly via the big efforts of my collaborator extraordinaire Maia, Fight Colorectal Cancer and Flatiron Health! There is some tweaking going on behind the scenes of things that didn’t arise during beta-testing but overall the rollout went very smoothly! I hope as patients and caregivers give it a try that it is very useful to them! A huge thing that means a lot to me is that a non-CRC advocacy group contacted me yesterday about potentially using the methodology to serve their own patient population – which is really my big picture goal… to help as many Stage IV patients as possible no matter what their “ribbon color” is! I know this is the feelings of many other Stage IV activists I have come to know this past year! There is nothing “CRC-specific” to the curation methodology I used, I believe it can be tweaked to serve many different types of cancer.
On the personal front…
We had a pre-summer pool party on Saturday where the girls and their close friends had a blast! Because of my SIRT surgical sutures I couldn’t #CannonballLife my way into the pool this time but I had fun throwing diving rings into the pool for Eleni! Life and being a Dad continue on!
So taken all together, being realistic, I couldn’t have asked for a better week!
But then on Saturday Evening, reality had to reveal it’s truly ugly head…
I became nauseous and by overnight it escalated to vomiting. And I know my body very well. I knew exactly what this nausea was from. It was symptoms of my liver disease, starting to reappear only 12 days since my last biweekly chemo infusion. This was hard for me to witness, on both mental and emotional levels. It means that I truly am travelling my entire life right now on a knife’s edge, threading the needle.
I can not miss a single infusion of continuous chemo, not even a single week’s pause, without significant disease symptoms appearing. That is an incredible burden. But it very much strengthen my resolve in getting the Y90-SIRT procedure done as quickly as possible (June 1 for the right lobe) and using continuous chemo, keep the left lobe under control to make it to a second left-lobe Y90-SIRT procedure in August. I hope and pray that both SIRT procedures (Explained more fully here) will “reset the clock” enough in the liver to allow me to reenter the world of experimental immunotherapies and get in one or two Hail Mary immunotherapy shots on goal. That is my fervent hope and prayer right now…
So… what a week between all of the positive liver Y-90 SIRT mapping, back pain SBRT radiation & advocacy news – capped off with the negative return to disease symptoms of nausea and vomiting at the end, making it feel like a true roller coaster.
Not the most fun type of rollercoaster but I’ll take it because a “rollercoaster” implies gaining new highs and not just new lows!
But I think the first half of the week outweighs the disease return end of the week because it pushed plans forward (and I really like it when plans get pushed forward!) – so overall, “being realistic”, I couldn’t have asked for a better week… 🙂 — and I hope for many, many more like it!