Pancreatic Cancer Part 8: Never a Happy Day: Preparing to Bury Our Beloved

Our world turned upside down on May 19, when a physician’s assistant silently walked into an examining room, handed Peggy the results of an MRI which contained the words “probable metastatic process,” and walked out. That day marked the end of either of us being happy for more than minutes at a time. Ours is such a hard way to live that I've often had the thought that there probably aren’t many ways that are harder. 

Then, two weeks ago, things got harder when our fifteen-year-old tabby, Brewsky (the big cat in the photos), was diagnosed with stage two kidney failure. Before adopting him, Peggy so hated cats that she had nightmares of being pursued by unstoppable cat demons. Then our little black schnauzer died, and Peggy surprised me by suggesting that we visit the pound the very next day to look for a new dog. When the pound had nothing that suited us, Peggy surprised me a second time by saying. “Let’s visit the cattery.” Six-month-old Brewsky was the first cat we saw, and Peggy had no interest in seeing see another. Her nightmares of cats never returned.

August 6, marked fourteen years and six months that Brewsky has spent every day of his life under this roof. Peggy was working evenings when he moved-in, and while she was at the hospital, he would often scare the wits out of me, dog person that I was, by yowling and running circuits through the house, a practice that he continued until recently. He was also so troublesome as an adolescent that he would stare me in the eye while doing things I had just told for the fortieth time not to do. This always resulted in him running through the house in apparent terror while I chased him while cursing and slapping furniture with a yard stick.  

Despite doing everything that I could do short of violence, his disobedience continued. Then came the night that he suddenly stopped running, rolled onto his back, and looked me in the eye as if to ask, “What are you going to do now, Mr. Bad Man, beat me to death with your yardstick?” “You bastard, I never scared you for a moment did I?” I said as I dropped the stick and lay on the floor to pet him. Thus began a nightly ritual that continued for many months until he lost interest. 

Brewsky soon matured into a mellow and confident 15-pounder who has since foster parented four other kittens, one of whom he has literally “nursed” since 2015. He has also, at times, served as a parent to the humans of the household, which might be why, after being diagnosed with pancreatic cancer, Peggy said to him and him alone, “Brewsky, you’ve got to help me beat this thing.” Two weeks ago, we took him to the vet with what we thought was a simple respiratory infection and were told that he also had stage two kidney failure. After telling the vet of her own illness, bald-headed Peggy, said, “You’ve got to save my cat; I need my cat to survive.” Since then, Brewsky has stopped bathing, vomited blood, become incontinent, and stopped eating or drinking. 

Tomorrow, we’ll take him to the vet for what might be his last visit. I started digging his grave yesterday but had to stop because every shovelful was harder than a day’s work. The only good thing I can say about losing Brewsky is that neither Peggy nor I will have to grieve alone, as will happen when she and our other cats die, assuming, of course, that I don’t die first. As much as she would hate to lose me, Peggy wouldn’t choose to die in my place, as I would for her. That’s how nature intended for husbands and wives to behave, and I’m very sorry that I can’t let nature have its way. 

When Peggy is gone, I will have no one to share my days with; no bald head to kiss; no one to call beautiful; no one to share meals and music with; no one to watch old movies and TV shows with; no one to hold me in bed when I cry; and no one with whom to share decades of memories. People might bring food, tell me how sorry they are for my loss, and ask what they can do, but I can hardly ask for the thing I need most, which is for someone to stay with me indefinitely, to listen to my memories of 54 years of marriage, and to hold me in bed when my heart is breaking. I can’t think of a single person who would do that. This makes the other things that people do seem scripted, as though they are playing a role that says, “You can go close but not too close.”

When Brewsky dies, mine and Peggy’s spiritual father and the adopted father of our other cats’ will be gone for all time, and the nightmare that we are already facing will be many times more painful. And to think that we got cats in the belief that we wouldn’t suffer much when they died, the way we had with dogs.

Pancreatic Cancer Part 7: Discouraging News: the Horrors of Chemo

As most of you know, my wife, Peggy, has pancreatic cancer. Among her oncologist's first words were: “It would be reasonable for you to choose palliative care only. If you go that route, you will probably die within six months.” Had she chosen palliative care only, she would have now exhausted a third of her remaining time on earth. (Our photo dates from 1973.)

 

Peggy has now received five radiation treatments to her right hip and two chemotherapy treatments through a port on her upper chest. With her first chemo infusion, she also received a bone strengthener. As we left the clinic, she said she had a bad taste in her mouth and felt like heat was coursing through her body. She later complained that her supper tasted bad, but at least she could eat, which was more than she could do after 3:00 a.m. when fatigue, nausea, joint soreness, stomach cramps, abdominal bloating, and diarrhea (which changed to constipation), hit so hard that she spent much of the next four days in bed. We should have taken her chemo nurse's advice and started her on Smooth Move Tea sooner, because by the time we did, she was so desperate that she took a second dose hours later and ended up screaming on the floor while I hugged her. 

 

She had her second chemo on Thursday, July 10th, and her hair started falling out the next day. I told her that I would abandon her and the cats and move to Indiana (the first faraway state that came to mind), if she loses her good looks, but the truth is that I'm honored to be with her. I only I wish I could die when she does. I'm not the first man to feel this about his wife, and I know of one man (Robert E. Howard, the author of Conan the Barbarian), who shot himself in the head when his mother died. You can interpret the fact that men appear to need women more than women need me to mean that men are weaker or that they're more sensitive. (Peggy is in chemo in the second photo.)

 

Yesterday, I stayed in bed because I was too depressed to get up. Today, I cried throughout mass at my Episcopal church because I was touched by the beauty of the ancient music and the chanted liturgy; because I was sad for Peggy; and because I was terrified for myself. My life has become like a bad drug trip except that drug trips end while what I'm facing will frame my existence until I die. I can only escape my grief and terror when I'm asleep, but even then it's the first thing I think of when I get up to use the bathroom, and it keeps me from going back to sleep. I so want to die that it scares me, because I don't know how much sorrow I can take before something within me breaks. (The third photo was made after her second chemo when Peggy was in bed with our five cats.)

I don't want that to happen, but if I can scarcely trust myself now, what will my life be like when, after 54-years together, Peggy is no longer here to share my life cuddling; shopping; cleaning house; watching birds; enjoying our cats; doing home improvement projects; taking walks on Mt. Pisgah; watching old movies; going to doctor and veterinary appointments; sharing good times and bad; and, most of all, listening to one another talk about his or her day. Since she retired, I'm almost never alone, but if she dies before I do, the house will remain silent and the loneliness constant.

 

It would be unconscionable for me to kill myself because Peggy needs me now, and our cats will need me when she's gone (other people would mourn my passing, but only our cats' would lose their home, their human family, and their cat family). I'm reading a book entitled A Matter of Death and Life, by Irvin and Marilyn Yalom, a couple who had been married 65-years when Marilyn was diagnosed with terminal cancer. They wrote together until she died, and he finished the book when she was gone. So much of what they experienced, Peggy and I are experiencing. 

 

For instance, Irvin and Marilyn didn't believe in an afterlife; like Peggy, Marilyn considered the option of a medically-assisted death from the outset; and like I, Irvin seemed more upset by his wife's approaching death than she did. He and I are also alike in that he too considered killing himself when she died, but rejected it for the effect it would have on others. Yet, I'm afraid that, even if I attempt to live, my body might weaken and die, which is common for men my age. Clearly, men need their wives more than wives need their husbands.  As to why this is, I suspect that men feel some emotions more deeply than women. I say this based upon my marriage and upon the writings of the Yaloms.

 

Peggy gets chemo and blood tests every two weeks, and she also visits with Mark (her oncologist) or Betty, his PA (physician’s assistant) every two weeks. Several days after her first chemo, we had our first visit with Betty. We were having a bad day already, and it was worsened by the three hours that we spent at the cancer clinic, most of it waiting for Betty. It seemed like every bruised, shrunken, and emaciated cancer patient in Eugene was there that day, and this led Peggy to ask Betty if she would come to look like that. She also asked if she would get less ill when her body was used to chemo; and how often she would be able to take a break from it. 

 

Betty said that Peggy could expect to lose weight; that each successive chemo treatment would make her sicker than the last; and that she would have to take chemo every two weeks for as long as she lives unless every drug fails or she refuses treatment. Peggy then asked Betty through her tears if there was truly no hope whatsoever of beating the disease, and Betty answered that she would have to fight it for as long as she lives. Betty might have been wrong about this. Here is a relevant quotation from the Onco Library site (https://oncodaily.com/oncolibrary/pancreatic-cancer-remission-rate):

“Long-term remission in advanced disease is still rare but not impossible, particularly for fit patients treated at high-volume centers with access to clinical trials and personalized therapy... Although traditionally seen as incurable, a small but growing number of patients with metastatic pancreatic cancer are achieving partial or even complete remission with modern systemic therapies.”

As for how these characteristics apply to Peggy, prior to her disagnosis, she ate well, kept her weight down, lifted dumbbells three days a week, and took a strenuous uphill hike three days a week. She is also receiving treatment from a the Southern Willamette Valley's busiest cancer center, which offers access to personalized therapy. If anyone can tolerate the misery of chemo, Peggy is that person thanks to a strength and fortitude that have often left me in awe. (My friend, Hollis Shostrom, loaned Peggy a wheelchair, but in the photo, she is shopping for the walker that she already needs.)

 

It was impolitic of my mother to say that I married a better person than myself, but she was in some ways right. Even so, Peggy's life is now such that, as she looked at her once strong body in the mirror the other day, she said, "How low the mighty have fallen." Indeed, within two months, she went from being a the epitome of good health to being a cancer patient who groans, grimaces, limps, tires easily, sleeps a lot, can only walk slowly, and has moments of despair. Her radiation oncologist thinks she might have already broken her hip, and then there's that troubling lesion on her spine. Fortunately, she is a woman of courage and self-discipline who, to my embarrassment, is handling this crisis better than I. 

 

Peggy has received so much support from friends that thanking everyone has taken many hours over many days. They've emailed; called from far and near; offered to visit; offered to drive her to appointments; offered to make her meals; and sent cards, books, flowers, cookies, candies, tea bags, and the Pooh Bear in the third photo. Many have simply asked, "What can I do to help?" and a college friend from Houston invited Peggy to stay in her home so she could receive treatment from the nearby M.D. Anderson Cancer Center. Many of those who reached out to Peggy have also expressed support to me. Sadly, the people whom we thought would give the most have offered the least. I speak of her sisters who have never called, never sent a card, never sent a gift, never asked to visit, and never offered to help. What they have done was to accuse me of being weak when I asked that they support both of us. Aside from that, their contribution has been limited to  brief texts and heart emojis.

 

Betty speculated that Peggy might have a relatively good year left, but after that year, her health will decline so precipitously that she will need to ask herself if the cancer has taken away so much of what she loves that she no longer wants to live. Betty was wrong about this too, because another factor that will influence Peggy’s decision is her obligation to her loved ones. I just hope she won't allow her love for the cats and me to keep her alive beyond the time that she should die. I have already begun schooling myself for the day that she will say that she needs to die. When, and if, that day comes, the man in me will pick up her lethal prescription and grind the numerous pills with which she will end her life, but the child in me will silently scream, “NO! NO! NO! PLEASE DON’T LEAVE ME!” But perhaps I overestimate myself. Marilyn Yalom talked about ending her life many times, and each time thus far (I haven't finished the book), her husband, Irvin, threw himself into talking her out of it. 

 

Peggy's illness offers me the potential of becoming ever more wise, brave, and honorable. I want to care for Peggy so exquisitely that it atones for every way I've ever failed and for every bad thing I've ever done. So much of what I do and what I think also finds voice in the words of Irving Yalom:

 

“I stay constantly by her side. I hold her hand as we fall asleep. I take care of her in every possible way... When I shall be facing death, there shall be no Marilyn hovering, always available, always beside me. There will be on one holding my hand.”

 

I so wish I were more than I am, but I must at least believe that I have the capacity to become more.  Then again, perhaps I overestimate myself about this also.

Today, though, I am not just afraid or in grief. I am angry, angry that our internist of 34-years didn't catch this cancer when Peggy lost nine pounds in December (he attributed her loss to changes in her diabetes medication), and angry at the universe for pissing on a woman who took such good care of herself. I'm angry like Job when he railed against God for treating him unfairly, and I'm angry like Moses when he accused God of demanding more than he could give. Only I have no God to curse and to spit upon. Still, what these men felt speaks to me, none moreso than Jonah when he said:

 

Therefore now, O Lord, please take my life from me, for it is better for me to die than to live.” And the Lord said, “Do you do well to be angry?” And Jonah said, “Yes, I do well to be angry, angry enough to die.”

Pancreatic Cancer: Part 6: A Devastating Phone Call: Feelings of Loneliness and Betrayal

 

The photo is horrible, but despite the fact that it doesn't portray Peggy as the lovely woman that she is, it does speak to the hideousness of what our lives have become. 

I want to describe Peggy's condition in some detail because I have unknowingly led various people to think that she is worse off than she is. Here is what I can say about her... She walks slowly; her pain appears to be worsening by the week, if not the day; she complains of feeling cold when other people are hot; and she is becoming progressively weaker and less active. However she can still cook, do light housework, take short walks, and find enjoyment in life. Tomorrow morning, she will attend one of her button club meetings, after which she will go with me to Albany (60 miles up the road) where I am to have a sleep study, and she's to spend the night with a friend. Neither of these things will be easy for her, but at least her friend is someone for whom she feels no need to put on a brave front.

Last week was filled with doctors' appointments and medical procedures. On Monday, I finished up a two day root canal. On Tuesday, a radiation oncologist tattooed her ilium so he can hit within a millimeter of his target when he begins external beam radiation therapy on June 25, her 74th birthday. On Wednesday, she was lying in an operating room when her nurse's knowledge of medical terminology enabled her to realize that her surgical oncologist was about to biopsy the wrong part of her ilium (the crest instead of the acetabulum). On Thursday, a second surgical oncologist installed a port-a-cath in her chest. All of her procedures required a five hour stay in a hospital or clinic, and some of them required that we get out of bed five hours before our regular time. 

Within weeks, Peggy has gone from someone who would refuse to admit to pain even when she was obviously suffering, to someone who, when asked by a nurse on Thursday, to place her pain level on a scale of one to ten, labeled it an eight. It scares me greatly to know that she has far worse pain ahead of her, although, be that said, Vicodin is the strongest pain reliever that she has, and she only takes it at bedtime--she takes acetaminophen throughout the day). No doubt she could get stronger drugs if she wanted, but she can't admit to needing them.

Yesterday, (Sunday the 22nd) her regular oncologist called to say that the results from Wednesday's biopsy showed that the lesion on her ilium did indeed come from her pancreas, instead of being primary bone cancer or a benign tumor. This means that her cancer remains a stage four pancreatic adenocarcinoma for which a pancreatectomy (pancreas removal) is pointless. Over the seven weeks since we saw the words "possible metastasis" on an x-ray, Peggy and I have grabbed onto one hope after another only to see them all shot down. As of today, our hope is that chemotherapy will succeed so spectacularly that a pancreatectomy will once again be an option. I have no idea if this ever really happens, but when the oncologist seemed to hint that it does, we clung to his words. One good thing I can say about our experiences so far is that her five doctors have shown us every consideration.

Peggy is back in contact with her older sister, Dianne, with whom she ended contact when Dianne shat on me after I suggested that she, her husband, and Peggy's younger sister, Pam (all of whom are right-wing evangelicals), and I form a support group for the benefit of all. My request for help struck both sisters as unmanly, with the younger one telling me to "get over yourself," and Dianne calling me weak; accusing me of wanting to start a "pity party;" saying I lied when I wondered whether my emotional pain was as greater or greater as Peggy's emotional pain; and, to top it all off, blocking me from calling her (which I had never done), and telling Peggy that she never wanted to hear from me again. 

Peggy was furious at both sisters for the way they treated me, but Pam is out of touch because she went on an extended vacation to Europe immediately after attacking me. It's a different matter with Dianne, however, and Peggy responded by ending contact with her. After a week of this, she called Dianne to tell her how mad she was over Dianne's treatment of me, Dianne said that I alone was to blame and hung-up on her. After that, I was floored to realize that their harmonious correspondenc had resumed without another word being said about Dianne's behavior. It was as though Peggy had told her, "Shit on my husband all you want, Dianne, and while I don't like it, I won't let it affect our relationship."

Before the Nightmare

When two longtime friends visited us yesterday, Peggy explained the situation by saying that both Diane and I had acted badly, and that the situation is irremediable. I sat stunned because a week earlier Peggy had admitted that I had acted in good faith, and that Dianne had not. Truly, I tried my best to handle the situation well: I did everything I could to make my relationship with Dianne work: and I am still open to doing everything I can to make my relationship with Dianne work. After lying awake last night trying to understand her reversal of opinion, I remembered her words, "My world is falling apart, and to survive what I am going through, I need my relationship with my sisters to be normal." I can but take this to mean that Peggy needs to pretend that Dianne is not the mean-spirited, dishonorable woman that she believed her to be a week ago. 

Peggy also explained her recent embrace of Dianne in this way, "I love Dianne, but I love you too," as though Dianne and I hold an equal place in her affection, despite the fact that I'm the one who will be caring for her and suffering alongside her for however long she lives while Dianne's life can proceed as usual 3,000 miles away, where she can be certain of her sister's acceptance no matter how badly she has treated me. I find humor in the fact that this woman who accuses me of being weak is note-worthy for her fear and timidity, but then in her right-wing evangelical world, women are allowed to be weak. In her case, this means that her unwillingness to get on an airplane will probably prevent her from seeing her sister again.

It's hard to survive what we're going through without also feeling that Dianne is standing between us, and that she won't move an inch to remedy the harm that she is doing to the sister she claims to love. Until two days ago, Peggy had a figurine of two sisters who were sitting on a bench with their bodies touching. That figurine was atop a low bookcase that stands between her room and mine, and every time I would pass it on my way to the bathroom at night, I would reflect upon the fact that Dianne is not only between us all day, she is symbolically between us all night too. Four days ago, I moved that figurine, and while this hurt Peggy very much, she didn't put it back. Yet, in her heart, I' sure it's still there.

Breakfast on June 2

For Peggy's sake and my own, I have to put my feelings of hurt and betrayal aside, but despite the fact that doing so is both honorable and necessary, I have no idea how to proceed. I just know that I'm dealing with two heartbreaks, the heartbreak of Peggy's almost certain death, and the heartbreak of Peggy having given her tacit approval to me being abused by a woman whom I believe to be Peggy's primary source of emotional support. 

While I can certainly do an enormous amount of practical good for Peggy, I can't believe that she would treat me as she has unless the emotional support that I offer is, in her mind, inferior to what Dianne offers. Just as Dianne was her chief support when they were children, she is better suited than I to fill that role now that Peggy is desperate to feel like a child in the arms of her mother. This means that I am on the outside, and that can't allow myself to look for emotional support from someone who has traded what I have to offer for what another can give. It's not a question of whom Peggy loves more, but of whom she is closest to in this horrible crisis, and I want that person to be me. 

Pancreatic Cancer: Part 5: A Deeply Personal Perspectivve

 

Marc Uemera

I'll begin with a brief update for those who don't know what's going on. Peggy, my wife of 53-years--has been told that she has pancreatic cancer that has spread to her hip. She is in pain, is constantly cold, is growing progressively weaker, and spends much of her time in bed, some of it in tears. Our lives have become a living hell in which we have been abandoned by some of the people we looked to for support, most notably Peggy's sisters who I wrote about in my last post. This morning, I sent them the following:

"You responded to my cry for help for Peggy and me by trashing me for my supposed weakness. This has caused me to hate you, but I can live with that. A far worse result is that by trashing the very man who is one with your sister and who is doing everything he possibly can to help her, you have made it impossible for Peggy to share her grief and terror with you. I can't imagine why your contempt for me is so strong that you would allow it to alienate your sister when she is in fear of death and desperate for your help, but that has been your sole contribution to her care. I have no idea how you can repair the devastation you have inflicted upon someone you claim to love, but if you don't at least try, she will continue to be gone from your lives at any intimate level."

I don't expect a response, but I felt that I had to at least try to make them aware of the damage they have done. Week before last, a biopsy was performed on Peggy's pancreas by sticking a tube down her throat and cutting through her stomach wall into her pancreas. As expected, the tissue came back positive for cancer, and she was referred to an oncologist named Marc Uemera  (https://www.oregoncancer.com/physicians/marc-uemura-md-mba) who she saw last Monday. Marc said that she will most likely be dead in six months if she chooses palliative care only, and in one to two years is she chooses aggressive treatment. She chose the latter and was referred to a surgical oncologist named Diego Muilenburg (https://www.peacehealth.org/care-providers/diego-j-muilenburg-md) for the installation of a port-a-cath, a device through which chemotherapy drugs are injected. 

Diego asked her why she hadn't had a biopsy of the tumor on her hip to verify that it is cancer and that if it is cancer, the cancer came from her pancreas. We said that we had asked Marc to do this, but he said it wasn't necessary. Diego said that he was uncomfortable with her not having a bone biopsy because pancreatic cancer rarely spreads to a person's bones, and although such a biopsy can cause a great deal of pain, there is a 5% chance that the tissue sample will be negative for pancreatic cancer. If this should be the case, he could hopefully cure her pancreatic cancer by removing her pancreas, and then treating the tumor on her hip as a separate problem. Diego's words gave us the first ray of hope that we have seen since her diagnosis.

When we jumped at his recommendation, he said he would ask Marc for permission to do the biopsy. In surprise, I asked why he couldn't do it even if Marc said no, and he said that, technically speaking, he could, but he smilingly implied that doing so would damage his relationship with Marc. In response, I said that if Marc denies permission, we will find an oncologist who will give it. Diego advised against this, saying that Marc is the best pancreatic oncologist in Eugene. So it was that Diego texted Marc for permission, and Peggy called Marc's office on the way home to say that she wanted the biopsy. 

An hour later, permission was given, and so it is that the torturous wait has begun for yet another desperately needed procedure. Peggy has given me her medical power of attorney, and she and I are both assertive when it comes to speeding things along, but there is often nothing we can do aside from insuring that she isn't forgotten (it is my experience that patients who are unassertive are sometimes put on the back burner, even when speedy care is essential.

In my last post, I described myself as the lion at her gate, and this is true when it comes to being an aggressive partner in her fight against cancer. However, I sometimes feel like lion who has smoked meth, and this can pose a problem when dealing with caregivers whom I am trying to persuade to do something. Two weeks ago, there was a day that would have been shitty without her medical issues, but was shitty times twelve times over because of them. At one point when I got off the  speaker phone from calling a doctor's office, I asked Peggy if the woman to whom I had spoken seemed defensive, and Peggy said that she did, and that the reason might have been that I had seemed frantic all day while trying to get appointments made and procedures done. I knew that I felt frantic, but I didn't know it showed. It is hard for me to avoid becoming so overwrought that I can't calm down. This makes it impossible for me to sleep at night even with 25 mgs of Ambien and 3,600 mgs of Gabapentin. I feel like I'm about to fly apart, and this gets in the way of me adequately representing Peggy.

Another major problem is that Marc told Peggy that her hip is so weak that it could break if she walks much, and that if it does break, an orthopedic surgeon would be reluctant to repair a cancer ridden bone. Because long walks are Peggy's major form of exercise and relaxation, it is very hard for both of us that she has to give them up. We have an exercise bike, but her hip hurts too much to use it.

Yet another problem is telling people--especially friends--the bad news because it upsets them, and they don't know how to respond. Sometimes, we make the spur of the moment decision to tell near strangers or even complete strangers. For example, when my dentist asked how I was, I told him the truth, and, to my surprise, he spent ten minutes asking medical questions about her care. Unfortunately, I suspected that his interest had been based upon curiosity rather than concern. 

I'm 76, so I've seen a lot of life, but nothing has prepared me for what I'm going through now. Peggy's illness has taken both of us to lows we never thought possible. On the bright side, it has made our bond stronger, and has allowed for a degree of emotional honesty that we have never shared. For example, I have always been uncomfortable with letting others see me cry, including Peggy. Now that I cry on and off throughout most days, I can no longer hide my tears, and I have lost all shame in allowing her, or anyone else, to see them. Fortunately, I've been able to hold myself together in doctors' offices, and that's important because what I want from doctors is their best thinking, not their sympathetic support.