LABOR DAY PARADE – September, 2015 – an annual parade that goes right down our block every year. Our family unit of four, enjoying the festivities in front of our daughter’s house which is across the street and slightly south of ours.
A dictionary definition of remission is “a diminution of the seriousness or intensity of disease or pain; a temporary recovery.” This is where we were in September, 2015. What we also knew was this fact: There’s no current cure for stage 4 cancer. Still, it can be treated and managed. Most people with stage 4 cancer live with alternating periods of stable disease and disease progression. … For most, stage 4 cancer is likely to return, even if a person enters remission. Living within the bounds of these concepts was our task. The truth is, Michael’s initial diagnosis in 2012 placed him at stage 3A cancer which definitely left us with hope for a possible cure. Until November of 2013, while his cancer was following its insidious silent path through his bones, he was asymptomatic. Early that month, he had his first scan in a year – follow-up scans after a clear one subsequent to treatment were not in the protocols for his stage of disease. The shocking discovery of widespread bony metastatic disease and the stunning prognosis of 2-3 months survival, absent further treatment that we received on that fall day was shattering. We managed to pull ourselves together to push through the months of a powerful chemo cocktail, his only option, which again, as with his 30 rounds of head and neck radiation, was not as dreadful as what we’d anticipated. Except for fatigue, Michael was surprisingly robust. He was rapidly hairless, but never nauseous, actually gaining 26 pounds. That may have been due to a supportive steroid supplement. After those 18 treatments, from May of 2014 to August 2014, life mostly went back to normal. Even after the cancer reappeared on his August scan, we got all the way to February, 2015 before the terrifying downward spiral of Merkel cell really began. In the previous chapter of this book, I described the rapid devolution of Michael’s fitness from February to June, when we felt certain that he was just this side of death. Then along came the last ditch treatment, Keytruda one of the new immunological drugs, given off-trial, outside the bounds of established protocols. Although experiencing profound fatigue as his immune system was freed by the drug and ramped up to attack his cancer, Michael’s conditioning came roaring back. Dr. Zhang was stunned by the recovery, referring to Michael as an exceptional responder. When he was scanned in June, his body was riddled with cancer. When he was scanned in September following only 4 treatments, 80% of his disease load had disappeared. The plan was to move ahead with treatments every three weeks. In the interim we needed to figure out how to live.
Michael was still struggling with poor appetite and sleep issues but trying hard to improve. All of us in our family are trying to appreciate the remarkable gift of time and trying to find balance. We wonder about what an average good day will be like. A day when Michael will wake up and just be ok. Do a chore, ride his bike, whatever. Maybe take a little trip. It’s hard to go there mentally. We are all living hour by hour. I sign up for a creative writing class to get into the world again and do something besides caregiving. I also find myself a therapist. I’m trying to attend to some of the emotional erosion of my internal core over the past few years. I can’t believe all the deaths, threats of death and personal losses of family members and friends in such a compressed time. I find myself worrying about my own health almost as much as Michael’s. I’m aware of what happens to people like me and decide to take advantage of this little respite space to work on improving myself. I’m keenly aware of the fine line I’m walking between hope and terror. Living from blood test to blood test, scan to scan, minute to minute. A headache, a sneeze, a random pain and insomnia for both of us is no picnic. Even sex and massage don’t relieve the stress. Any little thing portends disaster when you have an incurable disease in your body. We both try not to think about it every second. But it’s hard to avoid.
October brings a sudden resurgence of Michael’s appetite and more recovery of strength. We decide to take a short trip to Turkey Run in Indiana which isn’t too far from home. Getting away is a good thing. The weather is beautiful as are the fall colors. Neither of us is in shape to do intense hiking but we manage enough to feel accomplished. All the natural beauty has this edgy brightness to it as we are so keenly aware of how precious and amazing it is to still be anywhere together. If Michael’s health stays stable, we decide to plan more trips between treatment infusions and scans. I worry a lot about going broke but in the end, I believe that I won’t ever regret anything we do in this unexpected space, no matter what the economic consequences may be.Michael’s energy has returned enough so that he can ride his bike again. An unexpected gift. Right now that really resonates as we’ve just lost a friend to brain cancer. Her journey was considerably shorter than Michael’s which is still endlessly surprising. Only 11% of Stage 4 Merkel cell patients are still alive two years from diagnosis. We try to stay positive, but privately I remain on edge. My journal entries remind me of the fear.
November 4th, 2015
Right now I’m very worried about Michael’s cough. It isn’t all day and night but his lungs are a weak spot and pneumonitis at Grade 2 disqualifies him from Keytruda and requires steroids. If it doesn’t improve, treatment ends. Next week is another infusion. I guess there will be xrays then. The model we have to choose is that Merkel cell will kill Michael. No matter what the scan shows, the cancer is still there and will come back. The question is how long can we hold it off? What will come next if Keytruda stops? Endless anxiety.
We took a quick trip to Chicago before the next scheduled infusion. Michael really wanted to go to Lincoln Park Zoo, a place he always loved. We realized it was where we had our first real date, after months of friendship that ultimately transitioned to lovers and life partners. Going there felt very sweet. We went to the Shedd Aquarium and ate Michael’s favorite Uno’s Pizza and at a deli which we’d always loved. So many exquisitely sharp memories, always accompanied by the unspoken question of whether or not we’d ever experience a time like this again. November 14th, 2015 was Michael’s 8th Keytruda infusion. Dr. Zhang was brimming with optimism that Michael would get a few years out of this treatment. I let myself enjoy that thought for awhile before swiftly moving back to neutral. I’m worrying because Michael’s had two toothaches in two months. Dental interventions are tough during cancer treatments. Anything invasive carries the threat of infection. I don’t like so many antibiotics in such a short time. I worry that they’ll wipe out his gut and I’ve read that immunological drugs need the right gut microbes to work properly. Of course I really know nothing but too much information feeds my anxiety.
Suddenly it seems, our third Thanksgiving since the diagnosis from hell is upon us. As I prepare all the family favorites, I find myself wondering who will eat the turkey legs. My mom always loved those best and started eating before everyone else as she usually took her insulin too early. It’s my first Thanksgiving without her. I decide that even though it’s Michael’s favorite holiday, I don’t want to host it again. It’s too much and I feel sad as the crowds get thinner.
November 29th, 2015
This Thanksgiving was very hard for me and is the last one I intend to do, whether Michael is alive or dead. It’s too much work and too sad as the crowd thins out. I had a really hard time keeping it together. No mom, only one sibling left and Michael, swinging in the breeze. I can feel the loneliness of the years ahead. I’d rather be gone. Now he has gout. What will the scans show?The December scan is on the first of the month. The next day we meet with Dr. Zhang for results and the decision about whether to proceed with treatment number 9. Zhang is practically euphoric. The scan is clear with no evidence of disease except a spot which appears to be Michael’s aching tooth. We’ve seen this before for the three months following chemo in 2014. That remission lasted a little over three months. But the infusion will happen. Dr. Zhang said his plan was to keep Michael on Keytruda for two years or until disease progression, whichever came first. So kind of stunned, we trotted off to the infusion suite, feeling basically elated. Michael got his IV and was soon sound asleep. I went out to the reception area to schedule the next appointments and to get copies of Michael’s labs which I’d been saving and comparing to each other since the beginning of his systemic treatments. When I got them I couldn’t believe what I was seeing. All three of his liver enzymes were extremely elevated to the point where treatment should have been withheld and steroids started. The Keytruda was already dripping into his arm. I quickly went to the nurse’s station and showed them the numbers. Within minutes, Zhang and his nurse cane running into the room – Zhang said he was upset and scared. He was so excited about the scan that he forgot to check the labs. He said we’d need to return the next day to rerun the liver enzyme test. I was hoping that perhaps all the Extra Strength Tylenol Michael was taking for his tooth pain was the culprit for the abnormal test results. Years earlier, while being treated for a herniated disk with lots of acetaminophen-based drugs, Michael’s liver enzymes had skyrocketed. His body didn’t like that drug. If the Keytruda turned out to be the issue, treatment would be halted, at least for awhile. From elation to the bottom of the tank again. We just can’t seem to get a break. Michael looked so well and his physical state was immeasurably improved. But you gotta have a liver. The next day, he was re-tested and the enzymes went down. The Tylenol was the problem. Technically we now believe Michael is truly in remission. We don’t know how long we get it but we’re so grateful.The rest of the month we swing on the pendulum of life. Michael sneaks out to jog which makes me crazy because of what his bones have been through this year. The doctors aren’t thrilled with this new exercise regimen and caution him to go slowly and for only a short distance. I am nagging him about this and his fluid consumption as his kidney function is a little off. I’m trying hard to remember that he is thrilled to be able to resume what he loves and that he’s always been less cautious than me. Also not as deep into the science as I am. I try keeping my thoughts to myself some of the time, never an easy task. Meanwhile we attend our grandkids’ end of the school year celebrations and prepare for our annual trek to Starved Rock. The woods and the canyons, the bald eagles and the rustic inn, topped off by a big indoor pool and a hot tub are balm for our exhausted selves.
When we return from that respite, December 23rd arrives – time for Keytruda infusion 10. At this appointment Dr. Zhang informs us that he’s leaving our health care facility in February. That means we’ll have had 3 oncologists in ten months. An unnerving situation, to say the least. I am still in contact with our very first second opinion doctor at the University of Michigan, Chris Bichakjian. I keep him updated on Michael’s situation and he is a steady resource for the latest developments in Merkel cell treatment. It’s still scary to go through so many local changes. Dr. Zhang suggests his friend, Dr. Zhou as our new oncologist. The thread of trust between Dr. Luyun and Dr. Zhang is now stretching even thinner and I’m prepared to keep doing my own research to help keep Michael alive. I know Dr. Zhou has never treated a Merkel cell patient. I have no idea how long we have in this remission space so the time to be working is now. On it goes. On Christmas we see the new Star Wars film with family in our usual tradition and go out for Chinese food afterwards. I am worrying incessantly about Michael’s tooth which he’s coping with, but we both know trouble is looming. He surprises me with a Roger Federer hat as my holiday gift. I’m busy dreaming of making more memories by traveling. We got Chicago, Turkey Run and Starved Rock when we’d thought Michael would already have been dead and gone. Hardly the stuff of fantasy but so much more than we thought we’d have. I’m hoping we can slip in one more trip before things go south. I doubt we’ll ever get our dream of traveling to Greece, but I’d settle for one more chance to dip our toes into our beloved Gulf of Mexico. We spend New Year’s Eve with our family and friends at our usual Italian restaurant. What a kaleidoscopic year. One I’ll never forget. Heading into year 4 since our life was changed by one phone call. What’s next?