February 28th, 2015
Michael woke up feeling nauseous and vomited bile. We waited a few hours – then he tried an Ensure and some applesauce. Those came back up so off we went to the ER for dehydration and anorexia evaluations. Neither was found and his blood work was all within normal limits except one liver enzyme which is still recovering. He is still taking oral pain meds-are they the source of the nausea?
We roll into early March, getting ready for the next scans. There are times when the pain abates and Michael experiences occasional hunger which we try to maximize, stuffing food into him to in an attempt to keep him as strong as possible for whatever lies ahead. On these good days, we go out for a meal or try to see a movie. During one of these rare forays into regular life, a romantic song from our very beginning pops up in the film. We both get chills and squeeze each other’s hands tightly, as for a moment, we drift back to that exquisitely innocent time. Meanwhile, our oncologist Dr. Luyun, has decided to have M try a fentanyl patch for pain. Michael is ready to try anything at this point. He experiences immediate relief and feels great for a day or so, but the pain returns fast. We received little information about how long it takes for the drug to build up in the bloodstream so we didn’t realize that he’d need supplemental oral meds until it did. We are so overwrought and frustrated. When he’s hurting and tired, I am as well. He’s tired of reminders about food and drink and I’m tired of feeling impotent. Our personality differences serve us poorly during these stressful times. When I get quiet, to stop being a bother, Michael doesn’t like that personality either. Finding a balance is hard as I am imperfect and certainly not saintly. Neither is he. At night, I lie in our bed, feeling him twitch and have tremors. We never sleep apart – there’s no room for that distance even if we’re both irritable.
March 9th, 2015
I lay here, wondering what the scan results will show, where the cancer is now, if it’s hitting his spinal cord, whether he will have permanent damage, become a quadriplegic, lose control over bladder and bowels. I want to know everything and nothing and I want both to hurry up.
By mid-March, we have scan results that show that the cancer spots are all growing but still reveal no clues about the cause of the intensity of Michael’s pain. We asked for a referral to orthopedics where there’s a very smart doctor out of Harvard. After checking all the scans, he recommends MRIs for the lumbar spine and both hips. He thinks those will provide the best diagnosis which can’t come soon enough. I’m still writing to principal investigators running Merkel cell trials across the country. The idea that you can get into a trial easily is completely false. The bureaucratic aspects are truly maddening, especially when there’s blatant evidence of a terminal disease. If a person is going to die anyway, why not let him have a chance? But that thinking is for another time.
The MRI results are terrible. The cancerous lesion that has been sitting in the disk at T-12 for months has permeated the disk wall and is compressing the lumbar spine. All the nerves in the cauda equina, the nerve bundle in the thoracic spine are being squeezed. Big pain. We are now in a medical emergency and in need of a neurosurgeon. Our radiation oncologist tells us that the disk has to be removed and that an artificial one must be inserted in its place. This would be a lengthy, complex operation. We quickly acquire an appointment with the most experienced neurosurgeon at our facility. He reviews all the MRI images and informs us that in his opinion, this compression is not a medical emergency and that we should return to oncology for radiation and chemo. We sit dumbfounded. There’s no time to go hunting for a different doctor. We realize that his pronouncement is code for either 1) his not being able to perform the procedure, or 2) that there isn’t any point in trying. We head back to Dr. Stanic, our radiation oncologist, who takes a deep breath and designs a radiation plan for the lower thoracic and upper lumbar spine which he warns carries the risk of paralysis. The treatment will be coupled with the chemo drug Topotecan, the second line of defense for MCC. Michael and I are both terrified but he continues to be willing to do whatever what might possibly keep him alive. For me, I bounce between admiration and despair. The appointments are scheduled.
The beginning of April starts with the first of 15 daily rounds of radiation. The chemo will be given once a week. This beautiful spring month will be consumed by treatment. When Michael isn’t too fatigued, we decide we’ll just enjoy spending time with our family. Our world has gotten very small. Michael is inner directed and focused on trying to stay alive. I’m committed to helping him in any way I can. The stress is punishing. On April 6th, the fourth day of radiation, we are entering the Cancer Center when I receive a phone call from one of my nieces, letting me know that my brother was found dead that morning by his wife. The cause was determined to be congestive heart failure. He was a troubled guy and in the previous few months, I’d been so consumed by Michael’s cancer that we’d barely spoken. There was nothing to do but go forward, sitting in the waiting room during the radiation appointment, contemplating life and death and everything in between. My goodbyes to Fred would have to play out as I kept plowing through what was in front of me. No more big brother. The days went by, blending into each other. Every time there was a chemo treatment, Michael would have blood drawn to see if his counts were stable enough to cope with the infusion. When the time for the third one came, his platelet count was so low he was at risk for a stroke. The chemo was withheld and instead he had a platelet infusion. Then he started a course of steroids to try preventing any potential bleeding in the brain. Another stunning blow. April is ending.
We head into May, trying to achieve some stability, physically and psychologically. There are days when Michael feels okay – we head outside to appreciate the weather and the garden. Throughout his entire ordeal we have managed to stay intimate. On May 6th, during the process of running my hands over his familiar body, I find a lump in a new spot near his spine. The next day, I call our oncologist to request a scan and find out that he’s resigned from the clinic. We are now without an oncologist – every original member of Michael’s treatment team is now gone. We go back to Dr. Stanic who quickly orders the scans for the next day. The results show stable disease. I can’t understand it. I remember that PET/CT scans don’t show any masses smaller than a centimeter.
Now it is May 11th. Our May 1st wedding anniversary kind of slipped away. After running an errand, I came home and found flowers, anniversary cards and Mother’s Day cards from Michael which make me weep. May 18th. Michael seems to be getting weaker. His appetite is poor and he is deconditioned. Sleeping a lot and getting breathless just walking through the house. I’m reading books for widows. I don’t find them very enlightening. Michael talks about death with dignity, although he says he feels stable. He doesn’t look stable. He is weak but trying to act normal.
What is happening inside me? I feel like pieces of who I am slough off every day. Like silt.
May 24th, 2015
I am lying in my bed on the morning of my 64th birthday. Michael’s hand is on my leg and I’m listening to him breathe. I fear this is the last birthday he’ll be next to me. Forty three birthdays shared. This one feels meaningless. There is a lump on his neck at the base of his skull. Last night I felt one in his left groin. Scan or no scan. These lumps are real. I am walking through this life, feeling mostly dread. My hope is dwindling. I have used myself up.
May 29th, 2015
This morning I found 3 pea-sized lumps on Michael’s head, very close to the site of the excision of his tumor on February 25th. The lump at the back of his neck is a tumor. I just know it. On Monday there will be biopsies of his head. This time, the surgeon is too busy to see him and a physician’s assistant will do the cutting. We know it’s Merkel cell. We’re only going to let him biopsy one growth. Then we’ll finally have the soft tissue requirement that kept him out of the Barnes clinical trial. We are still hanging on, albeit by the proverbial thread. We meet with a palliative care team on Tuesday to see if they can help keep Michael comfortable, both physically and mentally as this all unfolds. So much darkness while we fumble forward.
June 2nd, 2015
I am visiting mom at the nursing home. She has about run out of money and I am trying to get her Medicaid in the midst of my nightmare. She always remembers that Michael is sick. She asks me, “if Michael dies, do you think we should try living together?” I remind her that we already did that. In the midst of her dementia and my grief, we both laugh.
June 5th, 2015
Michael is getting weaker and less hungry. Today is his birthday. We spend a lot of it crying. Michael’s emotional pain is finally bursting out of him. He says he’s never lost anyone before, that the first person he’s losing is himself. The kids come over and we all sit in the yard for awhile. We all act just like ourselves which is both bad and good. The weight of what’s ahead of us is like a massive tsunami getting ready to wash us all away.
June 8th, 2015
June 16th, 2015
The week has been madness. The scan of the 8th showed widespread disease including a pleural effusion which is one of the reasons Michael’s breathing is so labored. Dr. Stanic soberly tells us that malignant infusions are virtually impossible to get rid of so that we should be prepared. Lumps are pushing out everywhere, neck, collarbone, both rib cages. I have no idea how Michael is still breathing. We now have a new oncologist, Dr. Zhang, who we’d seen a few times when Dr. Luyun was unavailable. He is smart and aggressive. We go to see him the day after the scan. Michael is so weak he’s in a wheelchair, but eventually has to lie on a bed in the infusion suite for his appointment. Miraculously his recovered platelets, plus the soft tissue disease finally qualify him for the trial at Barnes. Dr. Zhang goes to call those awful people in St. Louis to clear a path for us. Now all we have to do is gather up all the records, forward the scans and move into the trial. At last. Michael is resting at home while I run around gathering all the information. Again, I’m communicating with Dr. Linette and his nurse. A few days pass and there is no action from Barnes. When I call in again, I’m told that Michael isn’t in the trial, but rather that we have to come back so they can do their own scans. I am enraged and feel like I’m going to have a breakdown. I vow that when this ends, I will eviscerate Dr. Linette and his harsh nurse Joanne. Meanwhile we are to see Dr. Zhang tomorrow.
June 17th, 2015
Dr. Zhang is infuriated to hear that we are not in the trial. He asks us to sit and wait for awhile. When he returns, he tells us that he has managed to order pembrolizumab (Keytruda) off-trial for Michael and that he will receive an infusion immediately. This drug is in the same immunological family as the trial drug at Barnes and has been used for melanoma patients. This is an outside the box move. We are grateful for anything as we get ready to leap into this unknown, untried space. Unless this drug is a miracle, we have to face Michael’s death. Can we find a way to walk this path without crashing into a thousand pieces? Michael has suffered agonies. I am as close to him as anyone can get to another human being. Off to the infusion suite.
June 20th, 2015
I am lying in bed with Michael while I still can. The days are the same. I wake thinking of his death and the horror it will bring. I go away to the park in the morning and cry. Then I run errands and on good days, I swim for awhile. Then I go home and wait for him to come downstairs so we can begin the endless battle over food and protein. He sleeps a lot. We are next to each other, often in silence.
June 18th, 2015
Although it seems crazy, the day after the Keytruda infusion, the visible tumors on Michael’s body seem inflamed. The immunological drugs are supposed to remove blockades from the body’s killer immune cells, releasing them to kill your cancer. This sudden release produces an inflammatory response. Michael’s fatigue is profound. But I decide to start measuring what I can see to track the potential progress. Within two weeks, the tumors which initially looked worse, are visibly shrinking.
Michael is dragging himself through this process. Even though his style is so different than mine, I am awed by his stubborn courage. The Keytruda has impacted his pleural effusion. Twice in July, he has had to be “tapped,” to have fluid drawn from between his lungs and body wall. This is done by inserting a needle into his back. Dr. Zhang doesn’t want to chance having any tubing inserted permanently to stave off the risk of infection. The first tapping fills a 2 and a half liter container. The fluid is blood-red and is 100% Merkel cell lymph fluid. The second tapping fills 3 liters – as I look at it, I think half of it looks more amber colored than red. It appears the drug may be having a positive effect. July 12th, 2015
Mom has fallen in the middle of the night at the nursing home and has broken her hip. I run to the hospital where she tells me that she doesn’t think she can “make it through this one.” I an worried about surgery for her but the orthopedic surgeon says the pain without intervention would be intolerable. What he doesn’t talk about is the hospital delirium that accompanies dementia patients after general anesthetics. Mom survives the procedure but is in a dreadful mental state in addition to having post-surgical pain. For eight days, I run back and forth between her and Michael – finally I request hospice for her and a return to the nursing home before she forgets it altogether. I have to fight for hospice but she actually recognizes my conflict with the staff and supports me. Four days after she’d been returned to the home, I receive a call from a staff member saying that she’s asking for me, just as I’m walking Michael into the cancer center. My daughter swaps places with me. My sister joins us on that July 24th afternoon and we sit with our mother, watching her slip away.
She died on July 25th. We had a rapid funeral with those of her family who lived in town. The heat was blistering and I was terrified that Michael would keel over at the cemetery.
Four days later, our beautiful dog Flash, who’d developed a cough, had me very worried. I took him to the vet and asked her to diagnose him before I left. I didn’t think I could stand to bring him back there again. Bloodwork showed nothing but then she X-rayed his chest. Poor Flash had lung cancer and a pleural effusion, just like Michael’s. I held him as he was euthanized, went home and sobbed with the whole family. What an impossible time.August, 2015
Michael was still fatigued but slowly improving. The physical part was challenging but so was the mental exhaustion. I was utterly spent too, but continued to push forward. Day by day, he began to recover in teeny increments. We went out to eat. He worked in the yard. We tried a staycation at a hotel where he sat bundled up and wasted, but was grimly happy to be out of our house. We went to a rock concert at our local sweetcorn festival.
Scan month. Living between scans may be the hardest challenges we faced those many months. As time went by we got smarter about them, scheduling the follow up appointment for the day after the scan so we wouldn’t have too much time to worry. The early September scan was no exception – we went in for it one morning and by the next were getting the results. Which were spectacular. Between June and September, 80% of Michael’s cancer had vanished, including the pleural effusion. Dr. Zhang brought a colleague in to see the results as he was so excited he was barely contained. Michael was one of the exceptional responders to this new class of drugs, one of the 30-40 % whose bodies were just waiting for help in unleashing their cancer-killing cells. We were thrilled but still cautious. Every three weeks, there would be more treatment, more blood tests. But Michael was almost over the precipice and now, was back in his life. And mine.