This rather non-descript lobby hides the portals into the radiation and infusion centers which are now part of our calendars, part of the new routine of our lives as we move through the phases of cancer treatment. Michael has already been through thirty rounds of radiation to his head and neck in the effort to contain what appeared to be a highly treatable Stage IIIA Merkel Cell carcinoma (MCC.) But the radiation only provided a delay for the insidious cancer cells which eluded his only post-treatment PET/CT scan a few months after completing his protocol. We learned that those scans only detect tumors larger than a centimeter. So any teeny monsters can just hang around, plotting their next moves. In the ensuing year following that one lonely scan in November 2012, while being examined every three months in the general area where his first lesion had shown up, the MCC chose not to be predictable, to follow its typical trajectory of metastasis. No new skin tumors. Instead it moved surreptitiously through either his lymphatic system or his blood, which one we could never know, and deposited itself on his bones, seen commonly in only 10% of MCC cases.
Merkel cell carcinoma is a very rare disease in which malignant (cancer) cells form in the skin.
At the time, given that there were only about 1500 cases diagnosed annually in the U.S., the bone presentation was impossible to wrap our minds around. And it crept in without causing any symptoms. No pain anywhere. If we hadn’t begged for another scan, I’m not sure if the two-three month prognosis we received in November of 2013 wouldn’t have been even worse.
The radiation suite was on the first floor of the cancer center on the east side of the building. After the 30 targeted treatments to his head and neck, Michael had the classic loss of taste and appetite and burning of the skin which was expected during this type of exposure. Eventually his thyroid gland succumbed to the rays and he required a supplement to compensate for that alteration in his body. Then he appeared to return to normalcy. An illusion.
We were done with the surgeon and done with the radiation oncologist, at least for the moment. We were now in the medical oncology department. Chemo world. The chemo infusion suite was on the clinic’s second floor, where the doctors’ offices were, along with a number of “procedure” rooms. That title sounded deliberately ambiguous and scary. Before any chemo was administered, a blood test was done in advance to make sure there were enough red blood cells, white blood cells and platelets available before the hammer of treatment dropped and did its indiscriminate destruction of anything in its path. A meeting with the oncologist to analyze that bloodwork, and to address any other concerns was the first order of business on day 1 in chemo world. During that visit, we’d ask our questions and be given instructions about what to expect when, along with prescriptions for adjuvant therapies to help stave off some of the worst side effects of whichever particular cocktail was on the menu. And so began the meds for the anticipated nausea and the steroids to help reduce inflammation and increase appetite. Because of the strength of the chemo cocktail, an order for a Neulasta injection was ordered and would be given the day after a chemo round ended. That drug was intended to stimulate blood cell development in the bone marrow after the devastating effects of the treatment. We were told that there would be six rounds of this cocktail, administered for three straight days, every three weeks. After the first three treatments, another scan would be done to see if there was any response to the drugs. If there was, the next three rounds would be given; if there wasn’t a response, chemo would cease.
These were the facts we were trying to absorb. Suddenly we were living back on the edge, an edge we thought we’d pulled away from for over a year. I went back to read my journals to see my exact￼ thoughts from that time:
December 2nd, 2013
Today, I feel deep despair. Tomorrow is the first day of Michael’s chemo. The idea of watching him be poisoned is shrouding me in blackness. Knowing how he will detest this process and how the degradation of his body will hurt him is unbearable. A part of me feels that he should try this, although I rapidly squash the tiny rays of hope that come uninvited. It is mostly that he seems too young and vital to just surrender himself to this evil cancer; there is no other course but to allow this toxic shit to make its efforts. But standing by and watching him suffer is too hard for me. I know this will change and that there will be things for me to do when he needs me. Yet, I feel my toes curling on the edge of a steep and jagged cliff, looking down, down into the type of abyss that has frightened me my whole life. Always clinging to the ground and trying to stay stable, that’s me. But I’m being dragged along here and I can’t run from it. What is left in my tank? I feel empty.
Michael’s first day of chemo arrives. We meet with the doctor who checks his vitals and labs before he orders the carboplatin and etoposide cocktail. The clinic pharmacist mixes the drug doses based on Michael’s weight. We head into the infusion suite where you can receive treatment in a large open room with other patients, or in a small private room. We always ask for privacy and are lucky enough to get one every time. The treatment begins with a nurse setting up an IV because Michael has opted out of getting a port which would allow the meds to be administered through the same place￼ every time. I think the idea of having to see this sealed hole every day is more than he can bear. He wants to be able to forget what’s happening for short periods of time and he couldn’t do that with the port in his upper chest. I think the port would be easier but it’s his body, not mine. And our different approaches to life will be apparent as we navigate this experience, as we’ve navigated our whole life together. We’ll figure it out. The nurses are warm and comforting. One in particular is the go-to person if inserting the IV into an uncooperative vein is particularly tough. The treatment is a three day process. We go in around 10 am and start with an anti-nausea drip. Then the IV has a flush and we wait for the bags of chemo fluids to come up from the pharmacy. They are calibrated to drip in at a particular rate. The ticks of the machine counting and clicking becomes a soundtrack for treatment. The days can be very long. Meds can be delivered late. Nurses get tied up with other patients. Sometimes we’re there for seven hours. But we come prepared.
Michael and I have been too busy in our daily lives to watch many of the highly rated television series that we’d heard about so we decide to catch up while spending three straight days in the cancer center. He brings his laptop with him and we start plowing our way through the shows we’ve missed. When the sweet nurses come in to change his med bags they ask us what we’re watching. Things are a bit awkward if they appear at a moment when Dexter is plunging a knife into someone’s chest but, macabre as that may seem, it’s a distraction from thinking about￼ MCC. We try watching Breaking Bad, but after a few episodes, Michael nixes that series as the main character has lung cancer. Too close to home.
There are three weeks between treatments. After round one, we are coming up on the winter holidays. For many years at this time, we’ve traveled to Starved Rock, a beautiful state park with hiking trails, bald eagles, and a lovely lodge with a big indoor swimming pool and hot tub. We’ve traveled there with both of our kids and over time, with their friends and sometimes with only ourselves. We decide to go, not knowing if this will be our last time to share that place of memories. Michael’s hair is already gone and his platelets are marginal but we trundle off with our daughter, son-in-law and grandson. The little guy has a cold and being in the vehicle feels like we’re in a germ factory but we’re living one day at a time.
The first night goes well, but it becomes clear that our grandson is feeling worse. While Michael is trying to push the thoughts of his illness below the surface, I am becoming increasingly hyper-vigilant and paranoid about random germs and the possibility of infection. At dinner, he orders a steak that is so rare it may as well have hooves and I begin rattling off the dangers of eating any meat that’s not well-done. Michael gets so angry that he gets up from the table and stalks away. This conflict will be revisited many times as I aggressively try to protect him from opportunistic infections, while he feels I’m too pushy and overbearing. Trying to find the balance that fits both our needs during this impossibly stressful situation is tough. I try reminding myself that in difficult situations, people tend to become more like themselves than ever. No one is changing personalities so life becomes a television show with a nifty ending. The powerful intimacy between Michael and me is strong but so are our very different approaches to problems. Chemo world highlights those and we have to struggle through our unwanted conflicts to remain a tight unit. No one can prepare you for these developments – you negotiate them as they arise and try to hurry as the clock always feels like it’s running down with no time to waste on stuff like steaks.
Round 2 of chemo takes place over Christmas. The cancer center is closed so we are sent to the cancer floor in the hospital for infusions. Being there is oppressive and deeply sobering. The inpatients are very ill and feel like our future instead of our now and we both want to get out of there as fast as possible. Michael finally gets a cold and I worry incessantly. But despite the respiratory issue and a lot of fatigue, his steroid, prednisone is having a positive effect on his appetite so he has no weight loss and happily, no nausea. But there is no way to know whether the treatment is being useful or not and the pressure is hard to take. Michael gets quiet and I try to allow him that. He is facing death and I am not. I turn to my journal.
January 14th, 2014
From 9 am to 2 pm, I was sitting next to Michael while he was being pumped full of carboplatin and etoposide. Now I am having a pedicure. I’m trying to be mindful of the fact that I’m alive and that my body is full up with stress. This week is insane. Three days of chemo through Thursday. The next two nights, our grandson will stay with us because our daughter is having her baby on Friday. I don’t know who to worry about first. I run around with Purell and Lysol wipes and sprays, making everyone wash their hands and stop blowing their noses into tissues that are randomly discarded. There’s so little I can control. Today the doctor showed us Michael’s diagnostic PET scan. It looked like someone had dipped a paintbrush in black paint and flung it all over his bones. We’ll know nothing until the scan after this, round￼ three of treatment.
On January 17th, 2014, our new grandson was born. After November’s dreadful diagnosis, we weren’t sure Michael would be here to meet him. The round￼￼ of chemo earlier in the week hit him like an avalanche. I’d dropped our oldest grandson at daycare that morning and went by myself to the hospital to be the first to meet the new baby besides his parents. So different from welcoming our first grandchild together. Michael eventually came to get his Neulasta shot and see the￼ little one but his mood was dark and his fatigue profound. I knew he was thinking about not being around to watch this baby grow up. He went home and returned for awhile later, pulling himself together to hold the baby. The kids gave this new little boy “Michael” as his middle name. As my daughter’s last name is hyphenated, Michael will be around for decades to come, long after the original is gone.
On January 29th, Michael has the PET/CT scan which will show whether his ￼nine chemo treatments have had an effect on the widespread MCC bone lesions. These scans make us fraught with anxiety and in addition, are quite peculiar for Michael. Because he’s 6’4″ tall, he has to be scanned in two parts as his body is too long for the￼ equipment. He is exhausted and his blood counts have taken a beating despite the Neulasta injections. We have to wait until February 4th to get the results, to find out whether he is done with chemo or whether there are nine more infusions to come. While going through this process, I have taken a deep dive into researching all the science I can find about Merkel cell and about potential clinical trials and other treatment options. I can’t just sit with only one possible alternative that stands between him being alive and death. I realize that our community oncologists are not scientists or researchers. I also learn that clinical trials generally require that all other treatment choices must be exhausted before a person is eligible. This is my new job, researcher, while Michael copes with the toxicity of his meds.
The scan results come in and the news is better than we expected. Some of the cancer has disappeared. Other spots in the spine and femur look worse but the oncologist says that the Neulasta shots cause a lot of bone marrow activity which produce confusing images, so he is recommending the next three rounds of chemo. He thinks that Michael may need transfusions to get him through, especially as we’ve learned that he’s apparently had a low platelet issue underlying everything else. But to me, this means 9 more weeks of life. The first infusion of round 4 happens that very day. From my journal: We are not a tragedy. I know that. Holocaust victims were a tragedy. Syrian children are tragedies as are Sudanese and millions of other ethnicities on whom horror and genocide are perpetrated every day. We are one unfortunate little drama. I know life is still filled with beauty. I know I’ll be interested, even when I’m lonely.
The fifth round￼ of chemo is more punishing and wrests a deeper price from Michael. His fatigue is profound and he’s developed a reddish-black sore on the inside of his lower lip. A smaller response than other patients have, but nonetheless, difficult and hard to watch. This strong, endless partner of mine brought so low. I am unable to imagine his absence after 42 years together. I suspect I will feel like this until his decline is so staggering that I’ll finally understand that it’s best for him to leave me. The impossible. The cessation of dreaming. The absence of hope.
And then finally, it is March and the last three infusions are happening. We are old hands at this alternate reality now. We usually are in room 5 for the treatment. I know where to get the heated blankets, the water and the snacks. Michael’s veins held up and he only needed Deb, the magic nurse once, to start his IV. Somehow he’s avoided transfusions. We’ve gotten current on our tv shows and some movies as well. At last, this chemo world is ending. We’ll have to wait several weeks until the beginning of May, to let his body settle itself after the assault of the toxic treatment, and then he’ll be scanned to see what worked or didn’t work. The scan is the day after our wedding anniversary, perhaps our last. I’m still researching and we are also desperate to squeeze something in the way of retirement together into our lives. On April 2nd, 2014, we drive to Indianapolis and board a plane for Tampa, Florida, en route to a fancy resort/hotel right on the Gulf of Mexico at St. Pete’s Beach. When we arrive, I am renting a car and looking at Michael who is pale and wiped out. But we’ve done a good thing. The trip is restorative, for both of us.
April 8th, 2014
I was really scared on our travel day because Michael looked so pale and exhausted. But each day, he has improved, has real color in his face and has relaxed so much. We￼ slept late and ate brunch and then sat and read or walked on the beach. Michael eats a hearty bowl of clam chowder every day at the restaurant on the beach – the clams are a high-heme food to help restore his blood count. We doze and stare at the beautiful Gulf. Then we amble somewhere for dinner and afterwards, we lie in our bed, have sex, watch television and hold each other. We have managed to shove away￼ the disease for this brief period. When grief and terror creep in, I am using all I have to push them away. I know when we go home tomorrow, everything will rush back in and this bliss will eventually slip away. But its sweetness and ease make it one of the best trips we’ve ever had, as with our heightened sense of being alive, we totally soak in every moment. Maybe it’s our last trip. I have no idea. But I won’t ever forget it.
We head home and make our way through the next few weeks. On May 1st we have a melancholy anniversary dinner. Michael gives me three CD’s he￼ put together for me called “Love Songs for The Lovely Renee.” I cry at the care￼ he gives me in the midst of his confrontation with mortality. The￼ next day he is scanned and we struggle through the weekend to his Monday morning appointment with the oncologist. The doctor tells us the scan is clean. We are off the hook until August. Chemo. Check. Moving forward.