“For you I’d bleed myself dry.” Yellow by Coldplay
I know that so many people don’t have homes, not to mention the countless others who do have shelters, but daily, approach them with dread because of what’s waiting inside. The bones of my big old house in early spring have always been a welcome, heartwarming embrace until that day, March 4th, 2017, when I made the turn into the driveway, that same turn I’d been making since September, 1978. Bringing Michael home after our 32 day stint in the hospital was the single most frightening day of my life. I’ve borne children, taking on the weighty responsibility of guiding them from total dependency to adult life. I steered both of my parents through cancers and ultimately their deaths, carrying the yoke of decision-making about their ends of life as I simultaneously became an orphan. But nothing compared to the magnitude of being solely responsible for shepherding Michael through what remained of his life. We’d talked ourselves to exhaustion and grief so many times through the previous five years, making decisions and plans, clinging to each other in our bed, sobbing, sweaty, passionate and stricken, until we finally passed out from our inability to relate to this inconceivable reality. On this Saturday afternoon, Michael wasn’t going to our bedroom, but rather to the blue room, a place of total disarray except for his hospital bed and my recliner which I’d jammed through the doorway. Just a few months earlier, the blue room walls were lined with floor-to-ceiling oak CD racks along with a big shelving unit for vinyl albums. Michael had built all of those racks and adhered them to the walls. However, just a few months earlier he’d sold his music collection and all the racks but one along with it. The walls needed patching and painting but we hadn’t gotten to finishing that task yet. Now, despite its bedraggled condition, it was his home and mine as well.
My fear was matched by Michael’s confusion. He was exhausted, his days and nights mixed up and the omnipresent food issues a constant source of friction. Trying to clear his ropey saliva made him throw up every calorie I could get into his body. He was constipated and uncomfortable and I needed to help him. He tried to stay within the dignified boundaries we all take for granted in life. But he was too limited. I had to cross all those lines as I did with my parents but this situation was so much more painful. He cried, feeling there was so little left of his former self. I took comfort in knowing he’d forget some of these miserable moments, his degradation. What about me? Those first few days at home were almost ritualistic in their repetitive chores. The caseworker at the hospital dropped the ball with home health care, so it was just us. Sleep, wake, toileting, showering, eating, nausea and more sleep. Michael was still a big man who pushed his walker so fast I was afraid he’d fall flat on his face and that I’d never get him back up. I gave my frequently unwanted help. My bone on bone knees were killing me. We struggled forward. He was still in active treatment and too close to the inflammation from radiation to know if anything had helped. So far, he’d been too tired to figure out how to lower the bars on the side of the hospital bed. I still had control and realized I’d better transcend my emotions and think us through whatever is ahead. While Michael slept, I researched. And I considered the hypothalamus.
I was no scientist. But I understood the significance of that piece of the brain. The link between the endocrine system and the nervous system, it regulates the most essential functions of our bodies and hormones. Appetite and weight, body temperature, emotions, memory and behavior, along with the sleep-wake cycle and the sex drive. Plus it manages the pituitary gland which in turn controls the thyroid, adrenal and sex glands. Michael’s hypothalamus had been cancer’s feast. Its every single function was damaged by disease. I wondered if any of it could possibly recover. When I was rational, I remembered all this. When I wasn’t, I was just clawing my way through the hours. But I knew my Herculean efforts were not enough.
We were on our own until March 8th when home health care finally showed up. The nurse was only prepared for an intake interview. Michael was supposed to have a blood draw on the 6th. Now more waiting. The doctor was trying to see if he could get another Keytruda treatment. The ineptitude drove me crazy. Lost in a bureaucratic nightmare. I was trying to do physical therapy along with basic care. Michael was crabby and angry. He’d yell at me about the way I was getting his pants on and tell me to go away. I’d lose my mind, yell right back and then feel horrible. As my former coworker used to say, I was on my last nerve. The nurse weighed Michael who was down to 179.4 pounds. He was at 201 when he entered the hospital. How could I get him to eat? I decided that fresh air might help. He picked up his walker and started going out on the front porch. So many stairs. I tried to stop him. He threw the walker aside while I grabbed his shirt. He reeled around angrily and plunged back into the house, almost keeling over. He has no idea what he’s doing but has rage that he’s so much less of himself. His vision is blurry. He can’t understand the television remote or his phone. His memory is shot and his impulsivity is active. Will we both survive?
Elisabeth comes over when she can to help, trying to coax him into eating something. Henry is up and back between Panama, home and Guam. Michael won’t see anyone else. But the lonely cycle was awful. Like Alzheimer’s with a side of cancer. I knew the cancer would take over eventually. I couldn’t fathom the possibility of living this way for an extended period of time. I was feeling empty and exhausted, forgetting the substance of our relationship. What a wretched way to end our life together.
March 10th, 2017 – The reality of this is that I’m pulling Michael through all of this. Absent my presence, he would already be dead. He has no appetite and would neither eat nor drink without my constant prodding. He is disconnected from reality and has no energy. Can any of this recede? Can I get him to the next scan? Does it matter? There’s no cure for this disease. Just buying a little time. That’s the truth. Getting to the actual business of dying isn’t easy. Not for him, me, the kids, anyone. I need a plan. How do I help my kids? What can I do with what’s left of me?
Days go by in a blur. Sometimes Michael seemed lucid and we talked about death and hospice but then he’d forget. Sometimes I wondered if I’d remember how much I loved this man when he’s being so angry, frustrated and nasty. I didn’t make the food tasteless and I didn’t give him cancer. Every so often we’d have a normal conversation but then he’d ask when we’re going home. I needed to stay hopeless. Early in the morning when I knew he’d stay asleep, I drove to Crystal Lake Park and cried for about 15 minutes. Then I’d go to Steak and Shake to buy two chocolate milkshakes. I’d doctor them up with an entire Boost and lots of whey protein. I’m hiding calories from him, noting that somehow sipping from a straw is better than chewing.
On March 15th, we go to see the doctors. I was prepared for a hospice recommendation but they thought he looked pretty good and showed no new deficits. They recommended a stomach feeding tube which Michael agreed to, stating that he wanted to live. They think the first Keytruda infusion is holding the cancer at bay as he has no pain or other tell-tale symptoms. But he needs another one. We scheduled an appointment for tube insertion on the 17th. That night, Michael tried to use his computer for the first time since early February. It wasn’t too awful but he cried, saying he didn’t feel comfortable anywhere. We go the interventional radiologist for the insertion of the feeding tube but are astonished that his weight is up to 189.4 pounds. He takes his coat off but the gain is real. So we decided to postpone. On the way home, he said that he wasn’t hungry but he ate half a cheeseburger, a few french fries and the bulk of a milkshake. I feel like I’ve won the lottery.
The rest of March is a blur. Michael is awake more of the time but that mostly means he has space to be frustrated or confused. He says we should go to the lake or the zoo. We’ll be having a seemingly normal conversation when he suddenly asks if he has an oncologist. Home health care finally sends physical therapists, occupational therapists and social workers. He’s mad at me because he feels powerless but won’t see anyone if I’m not there. All technology overwhelms him. We try practicing cognitive skills with the newspaper. The last current event he can recall was that James Comey was fired. Scans are scheduled for the end of the month. Henry is coming home before he leaves for Guam. I dread his grief. Michael and I cry together. In his lucid moments, he remembers that he is the primary cook in our household and asks what I’ll eat when he’s gone. He also asks what I’ll do when he’s dead, tells me he wants me to find partnership, and that I have too much life left in me to be alone. I tell him he’s fucking crazy. Then he suggests that we move to Oregon where suicide is legal and kill ourselves together. I am numb. The tests will tell us what, if anything, is still ahead. I dread hearing that we’re out of options but I’m getting ready for that.
March 23rd, 2017 – I have no idea what will be left of me when this is all over. March 28th, 2017 – Michael wakes me at 4 am to talk. He says he’s disappearing and that I need to help him make plans. He’s trying to remember if he got a Phd, that he’s having trouble remembering. I give him a Valium so he can go back to sleep. March 30th, 2017 – Henry leaves for Guam tomorrow. Everyone is so sad. When will he have to come back? I’m waiting for Michael to finish his scan right now. Our radiation oncology head nurse walks through the lobby and tells me I look radiant. She must be out of her mind.
On the 5th anniversary of Michael’s original diagnosis, we get the news that more tumor has shown up along his spine. The oncologist thinks that his spinal cord is being compressed and that he should be admitted back into the hospital. For me that might be easier, but I refuse. Michael isn’t in pain and is still functional in all excretory systems and movement. I think he’d completely break mentally if he goes back there. Home is where he wants to be, strange as things are, so here we stay. We decide on another ten rounds of radiation to the back and a Keytruda infusion. If it kills him, so be it. He’d rather go down trying. I’m absolutely sure of it. In this time period, one of our oldest friends comes to sit with him for about an hour while I go to the store. Aside from him that one time, the family and the medical people, he sees no one. Some days, he is terribly short-tempered. He yells at our oldest grandson who is afraid and wounded. This just won’t do. I explain that he owes that little boy an apology which he manages while crying. Later, that sweet boy tells me he knows that cancer has corrupted grandpa’s brain. This is the little one I cared for from 7 weeks to age three. He is like oxygen for me.
April consists of changes. Michael wants me to lay with him in our bed. I’m afraid to go upstairs – so much danger, so many steps. We’ll try the couch first. Meanwhile treatment begins starting with radiation coupled with Keytruda in the middle. It’s a lot. Michael will have had 78 radiation treatments, 20 chemo treatments and 21 targeted and immunotherapy treatments. Unimaginable. He shows more fatigue but manages to eat a chocolate chip ice cream cone and a cup of french onion soup after the third round of radiation and and one infusion. We go to the outdoor basin we love in the middle of town to sit outside for a bit, even though technically, someone in home health care can only be home outside of a medical facility. Who cares? We’re living in tiny moments and squeezing what we can from them.
April 11th, 2017 – Last night we slept in our bed. Michael is thinking of his death. I was nervous and aware of every movement and touch. Should I be doing this? Living up until the end? What happens when I’m alone again? Am I alone already, for all practical purposes? The pain is excruciating. April 17th, 2017 – This morning I went to run a few errands, fairly certain Michael would be asleep until I came home. When I returned I could tell that the downstairs shower had been used. I was afraid he might’ve left the house and ran upstairs where he was lying in bed, dressed. He was very teary and told me he was dreaming that I wasn’t coming back and was very afraid. Just like when this whole thing started in January. What a huge responsibility.
We get some good days in the end of April. Sometimes Michael gets food for himself, small amounts but still showing interest in staying alive. He spends time with his grandkids. He left the house on his own for a few minutes which scared me. He cried because of his shortcomings. Cancer as a shortcoming. How unreal perception can be. He told me he was trying hard to think about me but that he mostly thinks about himself. He’s never experienced a death close to him. He can’t believe it’s possible. No frame of reference. I just hang on. Doing the spring chores, working in the garden while he sleeps, wondering who I’m going to be when this ends.
May 1st. Our wedding anniversary, over 4 decades ago. In 2012, we thought we’d had our last one. But here we are. The nurse is coming for a blood draw. I am chatting away with Michael in the living room while I straighten up when I glanced at him and thought his expression was strange. He asked me why I was yelling at him and said he had no idea what I was talking about. I went to him and started asking questions that let me know if he was in a short-term memory loss state. He was looking intently at my mouth. I asked him if he knew my name and he said no. I called the oncologist’s nurse saying I was thinking he’d had a stroke. I called my daughter who came here – Michael didn’t know her either. I asked him if he knew his address and he stumbled trying to enunciate something. Within minutes I was throwing a bag together before the ambulance would arrive. The ER was mostly ok. A quick CT scan showed a possible TIA but he’d need a brain MRI. They ordered tons of random tests, most of which I refused. I felt like they were wastes of time and money given the overall state of affairs. Before long we were back in our old room, being greeted by the staff we’d left almost two months earlier. They understood why I was refusing so many orders. Elisabeth came and stayed awhile. Then we were alone again in our space, waiting for the MRI. Ten hours after we arrived, the nurse came for him and I tried to close my eyes. Twenty five minutes later, the nurse came back and told me the tech refused to conduct the test because Michael had vomited. I knew he immediately that he’d tried to clear his saliva and brought up his meager dinner. The next thing I knew I was deep in the bowels of the hospital, being led to the MRI room. I was almost certain Michael would be ok and we needed to verify what was happening in his brain. The technician was sure he’d vomit in the machine, aspirate it and die. He said if I wanted it done, I’d have to stay and watch. I explained everything to Michael who seemed to sense the situation and said he’d be alright. An utterly inappropriate and surreal experience but there was no one around to refute it, so there I stayed and watched the test, heart in my throat.
The test results were bad. There is evidence of a TIA and indications it wasn’t the first one. No one ever told us that whole brain radiation could be a precursor to a mini-stroke but does it matter now? There is also spinal disease progression in two places, one new. Our oncologist says if he can maintain his current status for two weeks she’ll try another Keytruda infusion. But he hears that as having two weeks to live. All of our friends working on the cancer floor come to see us. And then we go home. He goes to sleep while I sit exhausted and paralyzed by sadness. We don’t go back upstairs.
Michael cannot wrap his mind about what’s happened. We talk and cry – he calls me his baby, like always. But this isn’t like always. He doesn’t have the energy to do what’s required of him nor the resignation to accept that this long struggle is coming to an end. A decision to call the treatment off will be mine. I think and think. When I tell him it’s ok to let go, he says, “no it isn’t.” He asks me if I’m jumping ship on him. I realize that this won’t be like the goodbyes in the movies. I’m going to make the call on hospice care. Henry comes back from Guam. Michael has just enough left to be able to communicate with Henry who plunges in to help with things like showers and shaving. Elisabeth visits frequently. By mid-month, it’s clear that there will be very little time left. The final decision comes when Michael who still insists on using the bathroom at all hours of the night, stumbles and falls into the shower. Without Henry, I could never have gotten him up. Virtually the next day, while both kids and I are right next to him, his next attempt to get up fails while the three of us manage to keep him from hitting the floor. I realize that hospice is mandatory and call to make the arrangements. He thankfully, is not in any pain except for psychic stress, which impels him to keep trying to move despite eating and drinking nothing. The rest of us are suffering while parts of us feel awed by his tenacity in holding on to life, even one as dreadful as this one.
May 12, 2017 – And now each night that I still have him, I kiss him and hold him in my lap to savor the easy connectedness we’ve always had since our first day. And burrow into his neck and breathe and hope that in whatever place he’s in, he feels me as he always did and finds comfort. I ache with loneliness in advance.
Every now and then, Michael remembers food and drink. By the time I get it to him he’s either forgotten about it or is unable to manage it.
May 17th, 2017 – It’s not every day you sign your husband up for hospice. Almost two years ago, it was my mom. No more doctor’s appointments or ER’s or bloodwork. Just waiting and watching for death. So today, he drank a Boost and ate a bowl of cereal. Said if he didn’t he’d die. Then he had an awful stomach ache. We try conversing. He said the first thing he thought of Henry was that he was so nice. That Elisabeth had spirit. That I was smart and when he looked at me he saw “my girl.” I told him that no matter what happened it would be ok. He said, “no it won’t.” May 19th, 2017 – M. told the hospice nurse that he still had a lot to do. But he can’t do anything. Tonight I got him to give our oldest grandson his pocket watch with the flashing red light that he so loved to play with – Michael said he loved him. A good memory for that sweet little boy. Our oncologist called and gave me her cell phone number. She’s worried about me. I know how much harder things will get. I’m very afraid. But no nursing home. Not as long as I can take it. May 20th, 2017 – I think of how many years I’ve thought of Monet painting his wife’s death face. Abd now here I sit, looking at what will soon be Michael’s. Both images will be seared into my brain until one day, my brain will blessedly let go. He wakes and says he doesn’t feel good. I explain that he hasn’t been ingesting food or liquid. I offer some and he refuses. I ask if he knows what’s happening. He says, “I guess I’m dying.” I told him I thought so too and that I couldn’t stop it. He’s cold and pulls the covers over his head. Later he is alert. He wanted Henry and Elisabeth. He hugged and kissed them and said he didn’t particularly feel like dying. Everyone cried. He had us call his old friend Brian so they could say they loved each other. We played some music and sang. Everyone was happy for a few minutes. After awhile, he got tired and the kids left. My chair is up against the hospital bed. I keep my hand on his or vice versa. No alone feeling.
May 21st was an unpredictable night. His stomach growled and he said it hurt. He ate a few spoons of applesauce and seemed lucid and understanding of what was happening but I know that will pass. I’m reluctant to start medication as long as he is responsive. Finally, when he continues to mention pain, I give him morphine. A terrible feeling, like I am killing him. By the next day, he was confused again. The hospice nurse came to check his vitals which were normal. He still has a ways to go. By the 23rd getting to the bathroom is too hard. I call the nurse who recommends a catheter. Michael touches my face that day. By the next one, the 24th, he is agitated. An aide comes to shave and bathe him and the nurse comes with the catheter. No more jumping up for the bathroom. It is my birthday. My sister arrives after not seeing Michael for weeks. She’s amazed that he looks so normal. A tearful goodbye to her brother who met her when she was a teenager. I’m getting birthday greetings and my old friend Joanne drops off enough cake for an army. All I can think is, don’t die on my birthday which finally, finally ends.
My kids and I hold the vigil. By the 26th, the nurse can’t find any blood pressure. His breathing is diaphragmatic. He’s not supposed to be here but yet he is. We watch in wonder, in disbelief, in despair, in awe. We, who know him best, sense the last desperate attempts he’s making to not let go. In the badly named “fight” which people call cancer, he is the ultimate warrior. Frightening and unforgettable. My dad quietly turned away from life. This is a whole other thing. On the night of May 27th, my kids go into the living room to crash on the couches. I am in my recliner, waking to administer the meds which will stop what is now called end of life secretion sounds, but which I’ve known as the death rattle, a miserable sound. The drugs have improved.
May 28th, 2017 – 1:19 am – His heart needs to give out. And when it does I have to claw my way through the hospice nurse coming and the funeral home taking him away in a body bag. I know I have to go to sleep now. I’ll hold his hand like I have been each night. This is going to end. My pain is limitless. I haven’t forgotten any of the bad. But I remember all of the good. My best friend. My considerate and exciting lover. My safe place. Those big shoulders and the arms wrapped around me. My hand holder in the movies. The one who knows me better than anyone ever did. The one who never judged me. All of it leaving with each gasp, each twitch beside me. The emptiness ahead. My starving body missing touch. I’m going to try sleeping. I could wake up to the wasteland. I’m going to try sleeping. I’m supposed to survive. 4:28 am – He is still breathing. Just now I thought he tried to verbalize something. Oh what is happening in there? 4:37 am. More meds for breathing. 6:40 am. Michael died in my hands. I run to wake the kids so they can kiss him while he’s warm. They go back to the living room. He’s gone. I make the calls. I stay with him through the next parts. The kids think I should leave the room but I don’t. I was able to kiss his cold lips and face. I didn’t know I could do that. 8:08 am. I am a widow. I am no longer a caregiver. For the first time since 1989 when my dad died.