It has been a rollercoasterhell of a year. I simply cannot think of a more accurate way to describe the year which was obviously difficult, and mostly not fun. Amy, the kids and I have so much to be thankful for, and 2020 has given us an awareness of this. Surprising, grateful, humbling, painful awareness. Overall this is a good thing.
Thank you for so much love and support. The past year was certainly not all rainbows and lollipops for you, either. And yet so many found time, energy, finances, patience, and many, many thoughts and words of prayer to lift us up. We literally could not have done it without you. I bite my bottom lip and cover my eyes, lean forehead on an open hand (and other lame strategies). But the tears still come. Your generosity has honestly brought me to tears far more than everything else that occurred in 2020.
It will do me well to remember that despite all this, the year did have a strong finish. Yes, it’s some good news for this update! There are still many caveats and unknowns, but I cannot think of a simpler, more accurate way to describe it.
After some communication and scheduling issues, I finally had the chance to see Dr. Reninger to review the results of the most recent CT scan from early December. Scanxiety is real; always looms over you in the mild purgatory between the actual procedure and the moment when a professional sits in front of you to explain the details. Sure, you can log into the chart and read the radiologist report for yourself. But it’s not a good idea. We have been burnt by that, both ways (thinking results are good when they’re actually pretty brutal, and the opposite). We should know better.
You don’t need to hear the gritty test details. Besides, seeing the report in writing still makes me cringe hard. But tumors are DOWN across the board. They’re even significantly down, which is “remarkable progress” given where I started and at the time of the test, having only ~8 weeks of immunotherapy.
Since I’m experiencing only relatively minor side effects, the plan, for now, is to stay the course. When a certain routine or drug combination has the number on an aggressive cancer, you don’t fix what ‘ain’t’ broke. Feeling tired and cold most of the time, bloody noses and random blisters on the back of your hands are nothing when you’ve been through GemCis and FolFox chemo protocols, with unrelenting painful bone metastases in the time between them.
Only a few months ago, the small end table near where I sit in the living room was overflowing with safety cap, translucent brown prescription medicine bottles. It was a full-time job keeping track of what should be taken and when. The other day I glanced over and realized that only two of those remain. If you allow me a decent sit, I will still probably pull a grandpa Simpson on you. I guess sleep is partly how you fund a revved immune system for a major, around-the-clock war campaign.
And what was that? Did I just hear the “R” word? Because it sounded a lot to me like the doc just said the word.
“Remission.”
To paraphrase:
“Maybe you’ll be one of those. …The more recent data shows that a patient who makes it a year on immunotherapy has a better chance of successful management and long-term remission.”
From the beginning, I have felt genuine respect and care from a number of professionals specializing in the field of cancer and cancer research. They have been immensely helpful, patient, and greatly encouraging. But not one of them have given me false hope, or spoke of “long-term” anything. I don’t know, but suspect this is because 1) they truly cannot tell how I’ll respond over the mid- to long-term course of a given treatment and 2) the prospects are generally not good. Healthcare providers know, but patients rarely understand, that sometimes the prognosis truly is not worth talking much about.
This was the first time that I’ve heard mention of something tangible and set in the mid- to long-term. I began immunotherapy on 10/18/20. Next October is a ways off and there are by no means any guarantees. But I need to make it past 10/18. It is highly unlikely that we will ever be able to fully put this behind us and go our merry way. But having something to shoot for, and at that point even just a chance is like a gift, or having another birthday!
Of course biological systems and subsystems are no respecters of such cut-and-dry, artificial constructs. But human minds very much are. Things (ideas?) like 10/18/21 are a legitimate tool that we use to gain a little bit of traction on an incomprehensible and profoundly amazing timeline.
Maybe this “goal” is like aiming to get to the end of a rainbow. Or possibly I misheard or misunderstood the doc, and now I’ve etched it in stone and hung it over the mantel. This could all be clarified in less than a half hour with so much as a phone call. But I’m not going to do that. I don’t care. I’m going with it, however much myth and misunderstanding.
It still is truly best to stay in the day. That’s usually all that we here at the Gorinski home can handle. Some days I pursue little more than trying to keep my feet warm. Each day is a blessing, with new mercies every morning. Oh, and also…each day has enough trouble of it’s own.
For now, it feels really nice to also have some kind of long- or even long-ish term base, keeping in mind that nobody has the future pinned down. After all, the future IS uncertain, and the end is always near. ; ) If in the past I forgot that tomorrow is not guaranteed for anyone, now I sure don’t. Sometimes I feel like Scrooge waking from his enlightening evening with the Spirits. I don’t suspect that I was previously a Scrooge. But at this point there is definitely a different perspective and emphasis, for however long it lasts. There’s a new and renewed appreciation of others, and what God has done and is doing.
10/18/21
Let it roll…
Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”
-James (4:14-15) references Ecclesiastes
Bonny Lane Club 