With Michael’s “clean” May, 2014 scan in the books and the next one scheduled for August, we turned ourselves to the task of trying to live a normal life within the constant awareness of the cancer cloud that was now our ghostly companion. Michael had turned 65 and was finally Medicare-eligible. In the United States, the financial aspect of cancer is a whole other companion that makes its presence known in the midst of the physical and emotional struggles.
Every day of the infusion process, coupled with the cost of the chemotherapy drugs, amounts to a staggering number of dollars charged. Without insurance, you are definitely bankrupt and perhaps ineligible for treatment. With insurance, depending on what type you have, you can still go broke. In Michael’s case, the out-of-pocket costs were challenging. The terminology applied to chemo as a specialty drug, which meant extra payments in terms of his prescription plan, was definitely infuriating. The implication was that chemotherapy was a luxury choice. But the costs didn’t totally break us. With a cold eye toward the money part of cancer world, we chose a Medicare supplement plan, Part F, that would cover the portion of treatment that basic Medicare would not. That would include future infusions. One worry off the list.
Then we turned our attention toward how to treat time. The daily nonchalance of planning ahead had effectively been stripped from our life. Thinking about plans for the future was over. We were grateful for the reprieve from treatment but were keenly aware that every healthy day was a bonus after the previous November’s dire prognosis. We knew the cancer was still lurking at the cellular level in Michael’s body. Both of us were grieving the loss of our long-anticipated retirement. His family tree was populated by people who lived long into their nineties. I’d always thought it would be me who died first. In any event, we both thought we’d have at least a decade or two ahead of us. That future was gone. Our post-chemo trip to Florida had been magical. We both felt like as we long as we stayed there, we could block out all the scary real life issues. There had to be a way to get more moments like those. We made the decision to cash out part of his life insurance policy, pay off some bills and hit the road, whenever his health allowed it. We would squeeze our retirement into every spare minute we could wrest away from his disease.
But first, we had some issues to deal with at home. A close colleague of Michael’s who was diagnosed with gastric and esophageal cancer the previous September, was failing rapidly. He’d asked Michael to assemble a music playlist for his memorial which Michael was happy to do. But he wept for his friend and also for himself as he anticipated a life cut short, too early. Too early. When this fellow teacher died a scant week later, we attended that memorial which fell on my birthday. Both of us felt like so many eyes were on us as Michael still stood tall, while his friend had succumbed to his cancer in only ten months. A difficult, painful day loaded with glimpses of the future. But when?
We also helped our daughter and her family out when she had surgery on a cartilage-damaged knee. Being there for them in our normal parental roles felt normalizing. We babysat for the grandkids and contributed meals and other comforts. For short times we could forget the anxiety lurking in the background and just be.
I was still spending time on research, poring over scholarly articles, writing doctors who were principal investigators on pending clinical trials, and searching for news on any promising treatments. I even started gathering documents and scanning photos to prepare for a slideshow that I’d need for Michael’s celebration of life. My intellect and my emotional sides ebbed and flowed daily as I tried to simultaneously stay present while preparing for what I felt was the inevitable. A harsh way to exist, but the best way for me to keep my head above water.
We decided to make our next retirement trip a drive to the Outer Banks in North Carolina. The St. Pete’s Beach trip was a way to get Michael’s toes back into his beloved Gulf of Mexico, a place packed with many happy memories for him. Now we were headed somewhere neither of us had been before, still with the water component we both loved, but a place which for me, was one I only wanted to share with him as a first-time experience. My eagerness to go was obvious and Michael didn’t want to disappoint me. But I learned that his heart wasn’t really in it.
June 24th, 2014
We’re here in the Outer Banks on the northern beaches of Corolla. It is truly beautiful here. I enjoyed the drive down, especially through the Blue Ridge Mountains which are majestic and ethereal. But the drive was very long and seemed to really take it out of Michael. His affect feels negative although he says he’s having a good time. He sleeps a lot which has always been true, and most especially since his chemo. But I worry that it may be a sign of his disease returning and it puts a damper on my spirits.
June 26th, 2014
Today started out better. We got up for breakfast, swam, read and sunned. In the afternoon we took a two hour hummer beach ride to see the wild horses of Corolla. We came back sticky and covered in sand. We had a conversation which devolved into an argument because it was clear that Michael is doing this trip for me rather than us. I feel like this was ill-conceived – it’s hard for me to enjoy myself if he isn’t as happy as me. He suggested that we do some sightseeing which made me feel better than I thought I could, but still, this is not the same kind of trip as our St. Pete’s Beach idyll. A disappointment. I‘d hoped for one more perfect interlude before facing the next scan in August. I wish I had more clarity about what he’s thinking…he still can be so damn quiet.
July 3rd, 2014
So we are home. The last few days of the trip were very fine with wonderful weather and much lazing by the pool and the beach. We ate at every restaurant on our list and even got the famous homemade Duck doughnuts which are fresh every morning and topped with the treats of your choice as you watch them being completed. Driving home was quite the long trip but so beautiful. The weather was perfect and the Blue Ridge, Alleghenies and Appalachians were glorious and majestic, dazzlingly green and lush. For awhile you can forget climate change and deforestation. Even cancer.
We came home tired and a little disoriented. We celebrated the 4th of July with friends. We tried to establish a daily groove, but the next scan was looming large and was hard to ignore. Michael became dark and somewhat flat. We worked in our garden, went to movies and exercised.
Then, for the second time in as many months, we were faced with another death. Our longtime neighbor had been struggling with a lethal leukemia for six years. He’d survived two bone marrow transplants and was constantly threatened by GVHD, graft versus host disease, a rejection of donor marrow. On July 9th, we were outside in our driveway when our friend’s son came racing out his front door, shouting that his father was on the floor, unconscious and covered with blood. The wife and mom in their crew was abroad at a family wedding, having felt secure that our friend was in stable condition, certain that he’d be fine in her absence. He failed suddenly and declined in less than 24 hours. Michael, my daughter and I were at his bedside, alongside his sons when he died. I felt that I was at a dress rehearsal. Absent his wife, I made arrangements with a funeral home and helped prepare for the bereft widow’s return. The following two weeks were consumed by helping assemble the funeral arrangements. That gathering took place on a blistering hot rainy day at the end of July. In the midst of the furor, Michael, in a burst of gallows humor, decided to make a cremation mix CD for his own end of life. I was a bit taken aback but thought better of it as I recognized that in our own ways, we were trying cope with what seemed inevitable, especially in light of the two cancer deaths that were so close to us.
August arrived with a bang, a literal one. As we were rolling through an intersection, a young student in a large SUV ran a stop sign and barreled into the side of my car. No one was hurt but starting the month with a crash felt like a bad sign. After all, the scan had happened only the day before. The accident felt like a bad omen. The days until the scan result appointment dragged, as did the long time we ultimately had to spend in the waiting room. When we finally saw the doctor he told us that three spots were lit up and active on the scan, one on each hipbone and one on the spine. He wasn’t sure of what the next step should be and amazingly, encouraged me to push on with my research and seek more opinions while he would continue to monitor Michael with scans. I wrote the most famous doctor in the country who was focused on Merkel Cell cancer and was amazed to receive a quick, personal response.
RE: Michael P. – Metastatic Merkel Cell patient – relapse post-chemotherapy.
Dear Renee,
I will discuss this with Dr. Erica Shantha, a research fellow working with me, & we’ll try to get back with you with sone thoughts.
Paul
I immediately began sending more inquiries to doctors across the country to track down treatment options. Some of the physicians and I were now on a first name basis. I felt surreal much of the time, as if I was operating way beyond my pay grade but I did it anyway.
August 17th, 2014 Ever since the scan results, I’ve been racing full-bore against time, trying to find a place for Michael to be. A place that will offer some hope for more time. I have researched and researched until my eyes feel like they’re falling out of my head. After calling and emailing and reading and thinking, we finally have an appointment at the University of Chicago with an advanced cancer specialist named Dr. Salgia. I know nothing of his work other than that he has a good education pedigree. I don’t know if he has any tools in his arsenal that are different from anyone else’s. He is not on the list of Merkel Cell folks who think Michael’s best chance is a trial with a PD L-1 inhibitor that is yet unnamed. And that trial is far from home. As I look at Michael next to me, now strong and robust, it is impossible to understand that this poison is taking over his body. I practice thinking of his absence but it is too hard. Our journey forward is unimaginable. He has told me beautiful things these last weeks. Last Friday we went on a staycation at a hotel where we napped and lay close together. That night, at a wonderful dinner, he gave me a pendant he’d designed months ago with a local jeweler. It is engraved in his own handwriting, my life, my love, my heart. Gut wrenching but beautiful and a treasure to hold forever.
A few days later, our garage is broken into and Michael’s beloved and long sought-after bike is stolen. He feels broken, defeated. But we decide to replace it and damn the expense. He finds an identical one in Iowa and will drive there on the weekend to pick it up. But first, we drive to the University of Chicago, looking for a new plan.
