Figured Out Where I Am
Last week I received amazing news. My 2nd CT scan since starting on the immunological drug Nivolumab (Opdivo) showed continued shrinking of ALL my tumors. The multi-centimeter tumors further shrunk by centimeters and the millimeter tumors further shrunk by millimeters. This treatment is now described as “durable” and I’ll be staying the course barring any changes. My energy levels have increased again to the point I don’t need daily naps, though I still need lots of sleep overall and am very wary of over-extending myself as I’m still vulnerable. I’ve been easily adding a couple pounds a week of weight and getting out more.
This treatment alone won’t clear me of my metastasized carcinoma, nor is remission an option for me. Underneath my scar-covered tumors I’ll carry active cells who would regrow to kill me if they get the chance. People have lived for 5+ years on Nivolumab (since it was first tested) and while auto-immune diseases or further tumor mutation are known concerns, they are uncommon and I’m not going to give them my attention. [Welp, that just changed upon learning previously unseen conditions are on the rise as ramped-up T-cells start attacking the body in new ways: Immune System, Unleashed by Cancer Therapies, Can Attack Organs. ]
Due to the hyper-rapid innovation of immunological and other cancer treatments happening at research centers and universities around the world. I’m confident that one of them will free my body of this brutal witch. Incremental enhancements and breakthroughs are happening on a monthly basis. Just last month, a clinical test using two two immunological drugs cleared 4 people with my likely carcinoma entirely of their tumors. But now I know why my doctor is in no rush to add to my immunological load considering the new immunological side effects that are springing up.
While I still battle fatigue, getting unstuck from my previous phase has strongly encouraged me that, slowly, I can expect to get even closer to high quality of life.
Since we last spoke I kicked my 24 hour-a-day regimen of time-release morphine. Pain meds add to fatigue and guarantee constipation. They also make you squirm like the addict that you are if you forget to take a pill. But I wasn’t feeling body pain when I spaced on my meds and I wanted to understand better where I was, so I asked if I could stop taking them. Since I’ve been doing so well, which seems to be a rarer outcome than I consider it, most of my care givers respond to requests for changes with “but you’re doing so well,” which is code for “I’d hate for you to make a change and something goes south. You don’t want to know what happened to the patient I was just meeting with.” So I waited an extra month before knowing I was ready to take the risk, and only then realized what a demanding experience it is to get your body off it’s opioid addiction.
I tapered off from 30mg a day to zero over a 7 day period. Then I spent a full 9 days under a dark cold-turkey shadow … even though I started taking anti-anxiety meds to help me through it. Some nights I had persistent electrical-like shocks running through my body. On night four I backslid and scrounged up a tiny pill sliver leftover from the tapering off, I had to make the shocks stop. Finally on day nine I woke up and felt right away my body was no longer missing it. It took a full day to verify, but it was over. And I realized I had to forget any assumptions and decision I made while I was under that 9-day shadow, as they were all addiction-affected.
If someone you know if getting off pain killers get close to them. Our bodies aren’t made to handle opioid addiction. Backsliding is physiologically much easier than fighting the jones.
An important recent change is I’ve gained understanding about where I am. I’m a person with a chronic-illness, that is being treated and has a good chance of continued improvement. I’m grateful that UCSF’s oncology team included a psychologist. This therapist has helped me mentally manage the all the original awfulness and then understand how one can leave it behind. We meet often for just a standard co-pay and she works exclusively with cancer patients. She was the one who helped me comprehend and confront my grief of losing my expected life. And when I couldn’t make sense of where I was, she’s guided me to understand I’m a person with a chronic illness. As humans most of us are used to our health status either getting better or worse, or being good. We’re not used to having sub-par health and simply moving sideways. Of course this overlooks all the people persevering through life with chronic conditions who are always having sub-par days compared to the average person. For the time being I’ll be one of those people who look and seem “normal” but guarding against their internal physical weakness, and limiting down their expectations because of it. Frankly I feel like a lucky SOB just to be here, and among all the other areas of empathy this trauma has opened in me, I have deep respect for all those people never getting to play life at the easy setting because they have a chronic illness that dogs them.
Another area of deep empathy that must also be wrapped up with the PTSD of being in a death spiral, is sympathizing with how bad it is for the non-lucky SOB’s who haven’t had a breakthrough treatment turn their dire situations around. This must be like what war veterans feel like. “Why did the others die and not me?” “Why is their family left bereft while mine is joyful?” “Why are my problems becoming trivial, when theirs are about getting worse?” I can’t see a movie with an deathly illness scene without sobbing. Same goes for thinking of friends or new acquittances that are still hoping for their break. Or family members lost to what is now curable. (My uncle died of likely the same metastasized carcinoma I have, less than 10 years ago, probably just 5 years from the cure I’m on.) It’s all still too real.
I can’t decide if I want my heart to harden or to never feel so blithely about life again.
But I have to feel good about my steady improvement and lack of side effects from my treatment. If this keeps up I’ll be able to work full-time AND be an active, loving parent and husband by early next year. Right now I could only do one or the other. I got a ski pass for the winter and if this crazy recovery keeps up I’m hoping to ski some runs with my daughter before the year is over. If not this month, then 2017 is looking very promising on all fronts.
