Peggy Update for July 18

 

Peggy is the first person at her large cancer clinic—and she might well be the first person in Oregon—to get a drug called daraxonrasib on the basis of “compassionate use,” because it has yet to be government approved. It is expected to be approved later this year, and only then will come the ultimate test of its promise, its limits, and its side effects. 

Peggy and I had put enormous hope in the thought that daraxonrasib would reduce her pain and double her life expectancy from six months to a year, but were greatly disturbed when two nurses spent a solid hour describing the horrible side-effects that it commonly causes (see photo of Nebraska senator Ben Sasse). Peggy is now taking the following drugs to manage those side-effects: 

Clotrimazole, an anti-fungal

Dexamethasone, a steroid

Doxycycline, an antibiotic

Hydrocortisone for rashes on her face

Triamcinolone for rashes on her body

Imodium (loperamide), an anti-diarrheal

Lomotil (diphenoxylate/atropine), an anti-diarrheal

Zofran (ondansetron), an antiemetic

Compazine (prochlorperazine), an antiemetic

Magic Molecule, an antimicrobial skin spray

SPF 50 sunscreen

Added to these many drugs are the drugs she was already taking for pain, sleep, and diabetes. Because she has spent her life avoiding drugs, she says of the drugs she’s now taking, “I’m poisoning my body.” She initially tried to take the daraxonrasib without taking the other drugs, but diarrhea, violent vomiting, and a tongue-covering rash that makes eating painful, quickly proved their necessity. Although she has yet to develop skin problems, 90% of those who take daraxonrasib do within two weeks (Peggy is near the end of week one), and the avoidance of doxycycline all but guarantees a serious skin infection, which is another reason to take her prescribed drugs. 

She has been too sick to work-out, but today she took a short walk, although she soon tired. On her sunny walk, she wore long pants, a broad-brimmed hat, and further prevented skin exposure with an umbrella, because two of the drugs she’s on make her susceptible to skin-burns. Despite its many side-effects, daraxonrasib is more tolerable than chemotherapy, which Peggy said, “made my insides quiver like jelly.” Even I can see the difference between how sick chemo made her and how sick she is on daraxonrasib. Chemo can permanently destroy the quality of a person’s life, or in some cases, kill. Such things have yet to happen with daraxonrasib, and although the drug is promoted as a life-extender rather than a cure, we can’t help but hope that it might cure Peggy.

The same day that Peggy started taking daraxonrasib, I began extensive work on our patio. It was bad timing in that I have to work until 8:30 (much of the work involves painting, and the now roofless patio is in full sun until 6:00), at which time I come in to find Peggy too sick to make supper. However, thanks to our wonderful friend Tom and our own supply of frozen food, we have something to eat, and Peggy is well enough to heat it.

Despite its downsides, her access to daruxonrasib gives us our first glimmer of hope since she stopped chemo and her two surgeries failed to remove her cancer. We both recognize the likelihood of her death, yet any hope at all is better than no hope, and the name of our current hope is daraxonrasib, a drug so effective that it recently inspired oncologists to cheer, whistle, and applaud during a minute long standing ovation at the world’s largest cancer conference (https://www.newsweek.com/new-cancer-pill-what-is-daraxonrasib-standing-ovation-biggest-oncology-conference-12021009). Peggy is truly on the cutting edge, and her clinic is going all out to insure that she can tolerate this drug.

The photo is of us in the happier days of 1973. Our life together has always has its problems, but despite her and my hospital work, and my work on ambulances and in funeral homes, we never imagined that our own lives would someday be as nightmarish as they became in May of last year when we saw the words “possible malignancy” on a radiology report. Yet, Peggy is still alive; we’re still carrying on as best we can; and the guys in the last photo are there for us 27/7. Then there’s a dear man named Tom Hilton without whose love and generosity I don’t know how we would manage. 

 

Peggy and Lowell Update for July 5

 

Now that Peggy is past her two surgeries, her physical therapy, and has stopped chemo, nothing more is being done for her, so our weeks have been spent waiting for access to a drug that isn’t yet FDA approved, and therefore requires a lengthy procurement process despite the fact that the people who need it are close to death. Our stress has been such that I spent two days in bed last week, and Peggy’s frustration led to a confrontation with her doctor who finally called to say that the drug has been shipped, and that he expects it to arrive this very week. Thus far, he’s the only doctor at her clinic who has access to daraxonrasib, and the prestigious Oregon Health Science University also hasn’t received it. Truly, we chose the the right doctor.

For the most part, Peggy has been carrying on with her life. She feels better now that the chemo drugs are leaving her system. Her hair is growing back, although it’s black instead of auburn, and she works out with weights three days a week and takes long walks on the other days. Although she complains of pain in her hip and abdomen, she seems so normal otherwise that it’s hard to believe she has cancer.

My relationship with church is another bright spot. Four members visited us last week, and there are a half dozen others whom I depend upon for support, which means that I feel as well-supported as I can reasonably expect. Today, I did my duty as one of several sextons. This means that I lock doors; turn out lights; look for anyone who is hiding in the building; and insure that everything else is as it should be. I greatly value this job because it means that I am trusted. I also attend a weekly, church-sponsored chat group and a biweekly, diocese-sponsored support group for people who have experienced—or are experiencing—horrific loss. Unlike Peggy, I need such things.

She and I are re-reading love letters from 1971. My best friend and roommate, Lynn, introduced us at Mississippi College. They were dating at the time, so I thought it necessary to ask if he minded me dating her. After saying that he did not, he told her to turn me down, thereby assuring that she would go out with me at least once. I had become attracted to Peggy weeks earlier while watching her eat while I stood in line in the cafeteria. I was struck by her face, her figure, her dignity, her modest appearance, her long auburn-brown hair, and the way she raised each bite of food to her face and looked at it with happy anticipation, compared to which I ate like a hungry wolf.

We only had time for two dates before school ended. She went home to San Antonio, and I left with a friend for his home in Alberta, Canada, with the intention of hitch-hiking back to Mississippi. I wanted to see Peggy so badly that I parted from my friend in Trinidad, Colorado, and started hitch-hiking the 734 miles to San Antonio. I decided that I would phone Peggy that same day if I arrived before midnight, and so it was that I called from a truck stop at 11:55. Peggy’s father was unwilling for her to pick me up alone, so the two of them arrived to find the last man that I rode with trying to sell me a set of encyclopedias off the hood of his car. I stayed with Peggy’s family for three days and proposed to her on San Antonio’s romantic River Walk. 

I thought it only proper to ask her father for her hand, but Peggy insisted that she break the news of our engagement to Colonel Mathes after I was gone. We had wanted to get married ASAP, but what with school and her parents having to travel, that turned out to be December 19. The Episcopal priest who married us insisted that we meet with him several times, and even then he was reluctant to perform an Advent wedding because, as he said, every one he had ever performed ended in divorce.

After my excellent friend, Tom, read of my trouble sleeping, he gave me some marijuana medication that is intended for sleep. The marijuana of today is so much stronger than the marijuana of fifty-years ago that it’s like a different drug, yet I was capable of having full-scale visual hallucinations on the old marijuana. I so wanted to believe that Tom’s marijuana would help that I took four times what he suggested, and then spent two wakeful hours in bed reading about America’s Civil War, which is what I do every night.

I am very moved by the tragic events of the Civil War, and Tom’s marijuana greatly multiplied my sadness. I’m especially touched by the plight of Civil War nurses who were scorned by the public and abused by doctors for being no better than prostitutes because they had intimate knowledge of the bodies of men to whom they weren’t related. Civil War hospitals were breeding grounds for viruses, which had yet to be discovered and for bacteria, which were not known to cause disease. Illness accounted for more Civil War deaths than battle, and the diseases that killed soldiers and sailors also killed nurses—Louisa May Alcott was one nurse who suffered for the rest of her life after being prescribed mercury for typhoid fever. The contempt for nurses was doubly true in the South where a woman’s place in society was more restricted. 

The night that I ate Tom’s marijuana, I was reading about a 26-year-old nurse named Helen Gilson who was permanently weakened by her years of caring for Yankees, Confederates, and the black soldiers whose suffering was generally ignored. Helen was known to spend time at the soldiers’ bedsides talking and singing to them, and she deserved all that was good at war’s end, but she instead died in childbirth. My marijuana-induced sensitivity made her death so painful that my only semblance of control lay in reminding myself that the effects of the drug would go away. How then, will I survive if Peggy dies, and the nightmare won’t go away? 

Cancer Update for June 20, 2026

 
Despite the fact that her last chemo treatment lowered her CA-19-9 results, Peggy told Marc, her oncologist, on Tuesday that she’s done taking chemo. That scared me, but when I later tried to talk to her about it, she said, “Don’t try to make me feel guilty,” so I stopped talking. Marc said ending treatment meant that there was no reason to keep her next appointment with him or to take anymore blood tests. As we were leaving, he said, “Go out and enjoy one another.” I took his words to mean, “Try to be happy today because you’ll be dead in six months.”

Prior to seeing Marc, Peggy saw her internist, and initiated the formal process for ending her life. He also put her in touch with a supportive organization called End of Life Choices (https://eolcoregon.org/), and she has twice spoken with a representative.

Of course, we’re still hoping that the new pancreatic cancer drug will become available before it’s too late. Marc is on the last step on the application process, but, unfortunately, each step has many parts, and this step has ten, the final step being that a representative of the drug manufacturer must fly to Oregon to evaluate the clinic. Why, when people are dying for want of a drug, this is necessary, I don’t know. Peggy will be the first person at the Willamette Valley Cancer Institute to receive the new drug, and the clinic’s 29 other oncologists are asking Marc to handle the application process for their patients. Didn’t those other end-stage patients know of the new drug, and weren’t they demanding that their own doctors apply for it?

Because her last chemo was two weeks ago, Peggy is feeling much better despite considerable pain. She attended the meeting of her button club on Monday, and she’s now out washing another segment of the backyard fence. When she mentioned her fence washing project to Marc, he angrily turned to me and demanded, “Why aren’t you doing this?” (I wanted to say that I get drunk and watch Married with Children at that time of day, but the truth was that I would gladly do the job with a power washer, but Peggy insists on it being hand-washed).

When people ask how I am able to bear-up under what Peggy and I are going through, I can’t say that I’m strong and brave because I don’t think I am. 184-Americans per day are diagnosed with stage four pancreatic cancer, and 97% will be dead within a year even with treatment (Peggy has lasted 13-months). Just as people wonder how Peggy and I are holding-up, we wonder how other sufferers are managing. As for myself, I am being eaten alive by grief and terror, emotions that are never more intense than when I awaken throughout the night, too scared to get back to sleep without taking another half Ambien. Unfortunately, the maximum dose of Ambien is 15 mgs per night, and I need 25.

When I asked Peggy to get me a prescription for Ambien in her name, she called me an addict and objected that it would be unethical for her, unhealthy for me, and that it would introduce dishonesty into her relationship with her doctor. I pointed out that there is a difference between dependence and addiction; that my inability to sleep might be a greater health risk than more Ambien; that she sometimes takes my prescription drugs; and that people of integrity lie everyday—like when they check the box that says they have read and agreed to ten pages of legalese in order to download an app.

Given my emotional state, I am convinced that adequate sleep is the only thing that keeps me from collapsing. If I can’t sleep, I can’t function, and I must function. I’m Peggy’s primary support; I look for treatment options; I do chores that she can’t do; I actively participate in every medical appointment; I have her medical power of attorney; I think of medical questions to ask her doctors; I decide when a second opinion is necessary; and I’m constantly on the Internet researching what her doctors have told her. When I confided my problem to a friend in January, he sent me a bottle of Ambien, without which I don’t know how I would have survived, but I took the final dose of his Ambien last night. 

Some nights, I try to take less Ambien by combining it with three Unisom or with 5,100 mgs of Gabapentin, but I will still run out eventually, and Peggy’s ethics and mine are a million miles apart. Peggy is an obeyer of rules that are laid down by people in authority. I have little regard for authority, so my own obedience to rules is situational. In this situation, I say, “Love means doing everything possible to help your loved one in the way that he considers vital, even if doing so violates other peoples’ rules.” I tell Peggy this, but my words make no difference, and my hurt intensifies.

Three of our four cats have recently become much more affectionate toward Peggy. When she naps, Sage, Ollie, and Scully nap with her. When she walks about the house, Sage walks behind her, crying to be held. When she lies back in her rocking recliner to watch TV, Ollie sleeps on her chest. This would make a lovely image if Peggy didn’t have an IV port in her upper chest that makes her skin taut, swollen, and uncomfortable; and if Ollie didn’t catapult skyward every now and then, endangering that port and making the whole chair rock. Cats are like people in that they have their good points and their aggravating points, and to benefit from the former, one must make peace with the latter.

Peggy's Outlook Becomes More Grim

 

We are besieged by nutria, which I have been dutifully chasing away. Last week, one growled and feinted toward me before running away. I’ve since been carrying a square-pointed shovel with which to better intimidate nutria. The next time one growled and moved in my direction, I threw the shovel, the point of which hit him in the hip. As he limped away, I picked the shovel up to finish him off, but I couldn’t go through with it. Peggy’s struggle to live has so sensitized me to how beautiful life is and how fragile our bodies are that I’ve become a different person. I felt such remorse for injuring the nutria that I briefly contemplated getting a live-trap and taking him to the vet, but Oregon law requires that nutria be euthanized as a destructive species.

Peggy’s last CA-19-9 test was higher despite being back on chemo. If next week’s results are even higher, she will stop chemo. Various people have asked whether she has access to the new treatment for pancreatic cancer. No, she does not. The drug will almost certainly be FDA approved in late 2026, but Marc (her oncologist) says she will be dead by then. He’s trying to get her early access to the new drug on the basis of “compassionate use” whereby an unapproved medication can be given to someone who will die without it. The application process will take the better part of two months, and we’re three weeks into it.

Peggy’s pain is increasing along with her anger at the delay in getting the new drug, and her hopelessness over the fact that the cancer has spread to her liver. She has also lost weight. Soon after she was diagnosed, she saw an emaciated woman at the cancer center and expressed horror that she too might look like that someday. The prospect of death hangs heavy between us, and we want her to die at home. If she so deteriorates that I cannot care for her at home, we want her to be brought here if she decides to end her life. All our hopes are pinned on this new drug; we don’t know if she can get it; and we’re both concerned that her death could kill me too.

We are badly in need of the help of my church, but I’m sad to say that the church shows little interest in helping. After I stopped attending in January in order to protect Peggy from infection as she awaited two surgeries, I missed the loving community that I had experienced. To regain some of what I had lost, I emailed the thirty members of the church’s men’s group to tell them of Peggy’s illness and of my reason for missing church. Not a single man responded. I also emailed ten or more other people who had been particularly friendly to me, but only one of them responded. Because some people at church receive an outpouring of love during hard times, I can but conclude that Peggy and I are unimportant because I only started attending a year ago, and have had to stay home for the past six months in order to protect her from infection as she prepared for two surgeries. However, the two active priests and the retired priest have been very loving, and Bob and Tom, two of the men whom I met at church, have also promised to be there for us.

All our hopes are pinned on this new drug, yet we already know of two people who died while waiting.

Peggy's Cancer Spreads

Peggy had a high definition MRI on Monday, blood tests on Wednesday, and saw her oncologist (Marc) on Thursday. The tests showed spots on her lungs, spots on her liver (all of which are too small to biopsy), and an elevated CA-19.9 cancer marker. Marc is trying to get her access to the new pancreatic cancer drug before its FDA (Food and Drug Administration) approval, but doing so involves a lot of paperwork and a lot of people’s approval, so it could take six weeks. 

He cautioned her that the side effects of the new drug are likely to be worse than the ones reported by the studies (which were pretty bad) because the people who were chosen for the studies were mostly young and had no health problems aside from pancreatic cancer. Marc also suggested that she go back on chemo. 

Chemo usually involves a combination of drugs, and the chemo that made her deathly ill in March is the only combination that is left to her. Neither she nor I supported putting her back on that, so Marc proposed that he only give her the less toxic of those two drugs. His thought was that it would serve as “a bridge” between now and the time that she has access to the new life-prolonging drug. 

Marc’s proposal sounded like a no-brainer to me, but Peggy’s experience with her last chemo was so horrific that she said she would have to think about it. Marc responded that the spots on her liver are likely to be cancer, and if they are, her cancer has the potential of spreading quickly. I sat hoping that she would ask for my opinion, and when she did, I strongly stated that she should take Marc’s suggestion. When she still hesitated, Marc said something about how much I love her, and how she is probably the only woman I ever dated. I don’t know if he meant to imply that she could trust my advice, or that she should do everything possible to stay alive for me, but Peggy and I got a good laugh out of her being the only woman I ever dated. However, she agreed to return to chemo. When she said she couldn’t come on Monday or Tuesday, he scheduled her for Wednesday.

Peggy worries quite a lot about what Marc thinks of her, and she often questions what he really means by what he says. I consider her suspicions groundless. Despite what she thinks, yesterday was the first time that he has urged her to take a particular course of action, and I interpret the fact that he never did so before to mean that he never had enough hope before. Right now he has ten patients with pancreatic cancer (the clinic where he works has many more), so he is well aware of how very deadly the disease is, but now that there’s hope, he wants her to stay alive long enough to avail herself of it. 

I am ever surprised by how rationally Peggy behaves under pressure, but I’ve also seen her become so stressed that her thoughts go awry. For some reason this happens in her relationship with Marc. It’s as though this youthful Asian man is her father, and she is his daughter who is desperate for approval (she would probably disagree with my analysis). What I see in Marc is a caring doctor who genuinely likes his patient, and has said how moved he is by the fact that I have accompanied her on every visit.

Right now, Peggy is terribly scared of taking chemo again because she was so sickened by her last round that she said it would be kinder to her body to allow it to die of cancer than to subject it to such poisons. I remind her that she vowed to fight this cancer with everything that is in her, and that Marc has assured her that the chemo he’s about to put her on is of such low toxicity that he “gives it out like water.” She can do this, and she must do this because the new drug that is expected to be approved in June or July is the first real hope that pancreatic cancer patients have had in fifteen years, and she must stay alive for it.

A Brief but Major Update

As you might recall, the CA-19-9 is an important blood test for the measurement of pancreatic cancer. A normal score is below thirty-seven. 

 

On Friday, February 13th, Peggy’s spleen and lower pancreas were removed in the hope that her CA-19-9 level would plummet. When it instead soared by thousands of points per month, we approached despair.

On April 1, a pancreatic malignancy in Peggy’s right hip was excised. Five days after her April 1 surgery, her CA-19-9 level reached an all-time high of 7,755 because the surgery hadn't had time to make a difference. Fifteen days later her CA-19-9 level dropped to 3,241. Our hope is that it will continue to drop.

 

Thanks to her two surgeries and to a powerful new drug called daraxonrasib that is likely to be FDA approved this summer, Peggy’s odds of long term survival are greater than they have been at any time since her May diagnosis. 

April 20, Peggy Update: Four Doctors in Three Days

 

Peggy's first doctor's appointment was her two-week follow-up with her hip surgeon who said that the site is healing normally despite continuing pain. The final three appointments were with her internist, with an OHSU (Oregon Health Sciences University) oncologist that she had never seen before, and then I had an appointment with my podiatrist.

When Peggy told her Eugene oncologist that she had rather die than take another dose of her last chemo, he said he had nothing more to offer, and referred her to two cancer centers: OHSU  in Portland, and M.D. Anderson in Houston, and in the hope of getting her into a trial study. Her OHSU doctor pronounced her ineligible for that facility’s advanced studies, but offered to recommend her for a phase one study. Peggy declined, saying that she’s not in bad enough shape to take a drug that hasn’t been evaluated for safety. 

M.D. Anderson’s representative said that Peggy would travel to Houston to talk with a doctor there because Texas doctors can’t get paid for televisits to states in which they are unlicensed. Peggy said that she was unwilling to do this.

Even without M.D. Anderson or OHSU, we have three sources of hope: (1) That the surgeon who did her April 1, hip surgery removed all of the malignancy. We won’t know for sure until she undergoes a high resolution MRI and a CA-19-9 blood test, but unless he missed something, or a previously hidden tumor turns up, she will be cancer free; (2) Another hope lies in a new, genetically-targeted, pancreatic cancer drug called Daraxonrasib for which her OHSU oncologist said she fits the genetic profile of people for whom the drug works. We are told that the FDA should approve the drug this summer; (3) The surgeon who operated on her hip gave us yet another reason to be hopeful by suggesting that we go to a website called clinicaltrials.gov, and conduct our own searches for clinical trials. Of the many doctors we’ve had, he seems the most brilliant.

As for my health news, the back of my foot hurts so much that I’ve been walking on the front of my foot, and so it hurts too. One of the four visits I mentioned was to a podiatrist who prescribed Meloxicam, gave me exercises to do, and sent me home with an insole. Still, I limp.

People sometimes wonder whether Peggy’s illness has brought us closer… Peggy’s cancer has brought me closer by increasing my belief in her courage, optimism, and perseverance, and by exposing her fear and physical fragility, thereby proving to me that my support is essential. Peggy’s cancer has brought Peggy closer by increasing her awareness of her ever-growing strength and her knowledge that I will stand by her side no matter what. 

On the downside, trauma can so stress a relationship that a couple will come to regard the misery they feel as being inseparable from their togetherness. This is why illness, natural disaster, or the death of a child, often ends in divorce. After 55-years together, I don’t see us divorcing no matter what, yet we are not unscathed by having endured nearly a year of ongoing trauma. 

It’s all so sad, all so wearisome, this being repeatedly yo-yoed up by hope only to be dashed onto the pavement by disappointment, and added to it is Peggy’s ever worsening pain. She has long been better than I at thinking positively, but now that her war against cancer is nearing its second year, her battle against despair has become grimmer, and it is I who try to cheer her, usually to no avail. We are together almost always, and sometimes it seems like too much, but I remind myself that she might die soon, and that I must cherish our togetherness. Perhaps, it’s true of most men—and women—that one of the things we love most about our partners are glimpses of the bright-eyed children that they used to be, but those glimpses have become less frequent now that the reality of suffering and the anticipation of death occupy so much of our awareness. Like metal that’s being abraded into filings, there remains less of us at the end of every day.

Men might be more likely than women to risk their lives for endangered loved-ones, but it’s women who dominate the ranks of caregivers, which is why sites like Reddit are filled with the accounts of embittered women whose husbands unhesitatingly abandoned them in their hour of greatest need. 

Another noteworthy gender difference is that aged men are more likely than aged women to die within months of their spouses. Young men glory in their greater muscle strength, and interpret it to mean that women are the weaker sex in every way. Then comes old age and the thought that this might not be so.

April 3: Peggy’s April Fool’s Day Surgery

 

Peggy’s April Fool’s Day surgery (aka percutaneous ablation with internal fixation of right acetabulum) came 47-days after her Friday 13th surgery. We had to check-in at the hospital, which is an hour’s drive north of here, at 6:00 a.m., which is five hours earlier than we usually get out of bed. In order to mitigate our fatigue, we spent the night before surgery at the Mario Pastega House, which is affiliated with the Episcopal Church and is for the use of Samaritan Medical Center patients and their families.

The surgeon remove a walnut-sized tumor from a bone in her hip called the ilium, and then secured the bone with glue and screws. Three hours after she awakened, three male physical therapists in their twenties came to test her movement and to give her advice on how to move when she got home. As they helped her walk to the bathroom, she peed on herself (she blamed it on a nerve block), so it was a good thing she isn’t shy. In fact, Peggy is so not-shy that, after showing them the incisions on her hip, she shocked one of her therapists by baring her abdomen so he could see the scars from her February surgery: “Why are you showing me this?” he asked, and I explained that she was proud of her belly because the three big scars were put there by a grenade that exploded when the Vietcong overran the field hospital at which she was a nurse, and she had to protect her patients with an M60 machine gun (a more likely explanation was that she was loaded to the gills with morphine).

Peggy’s ability to walk increased so rapidly after getting home from surgery that she soon traded her walker for rubber-tipped trekking poles. By the next morning, she had abandoned those also and was moving about the house with the aid of walls, chairs, and tables. She is now two days out from surgery, and is exhausted, in pain, and limps badly.

The CA-19-9 blood test measures pancreatic cancer. A healthy person’s level is zero to 37. Before starting chemo last June, Peggy’s level hit 2,550. Thanks to chemo, the number dropped into the 600s, but rose to 1,100 in December when the chemo stopped working. After her spleen and lower pancreas were removed on February 13, it was hoped that her CA-19-9 level would drop again, but it instead hit 4,480 on February 23, and to 6,340 on March 23. This could mean that the tumor in her hip (which had been treated with radiation) is active again, and/or that the cancer from her pancreas has spread to an additional location. When she told Marc (her primary oncologist) that the pain in her hip had returned, he concluded that the former was true, and put her on a new chemo regimen. He also ordered a “minimal residual disease” test called the Signatara that can locate tumors by finding—and tracing the origin of—even a small number of malignant cells that appear in the bloodstream. She will have her next CA-19-9 test on Monday, April 6, with the results being available on Tuesday. We’re hoping that her March 23, Signatara results will also be available next week.

Marc was unaware that the excision of the tumor on her ilium was even possible, and because he was out of town, she couldn’t talk with him during the interval between me finding a doctor who could perform the surgery and her having the surgery done. Fortunately, Nick, her surgeon, was able to get Marc’s consent before Peggy and I left Nick’s building last month. Had Marc objected, Nick might have cancelled the surgery were he like her previous surgeon (the one who did last year’s bone biopsy and port installation, and this year’s pancreatectomy) who said he wouldn’t make a move without Marc’s consent. After all, a surgeon’s livelihood is partially dependent upon Marc’s referrals, and while patients come and go, relationships between oncologists and surgical oncologists can last for years.

When Peggy sees Marc on Tuesday, he will no doubt put her back on some form of chemotherapy because it is possible that those new spots on her lungs are malignant and/or that malignant cells have landed in other parts of her body. Only 3% of stage four pancreatic cancer patients are alive five years after diagnosis, but I don’t know how celebratory they feel. If Peggy believed that she could only prolong her existence by feeling as scared, grief-stricken, and altogether miserable as she has felt this past year, I don’t know what she would do. 

If I were to compare her reaction to pancreatic cancer to that of an imaginary average patient, I would say that she has done very well indeed. Perhaps her worst moment came upon receiving her diagnosis, but another bad moment came while she was in the hospital following her first surgery, and became so overwhelmed with fear and grief that she asked for a therapy dog. An hour later, she was crying into the fur of a miniature black pug named Wiley whose life is devoted to providing counsel to sick people, frightened airline passengers, and youthful criminals—he unwinds by running agility courses with Ina, his adopted mother. I don’t know what emotional cost dogs like Wiley pay, but he did his job so admirably that Peggy taped his photo to our bathroom mirror. We humans might have our place, but dogs and cats offer that which we are unable to get from one another.

Peggy often thanks me for all that I do for her, and I respond that my life would be meaningless without her trust and reliance. I’ve surely accompanied her to over 100 medical appointments during the past ten months. I missed one office visit because I had a medical appointment that day, and I missed five radiation appointments because she said that I wasn’t needed. I also attempted to beg out of taking her to the hospital for her latest surgery. My hope was that she would spend the previous night with Ilse—a friend who lives near the hospital and is like a sister to Peggy—and that Ilse would drive her to the hospital the next morning and comfort her until she was taken to the O.R. for the three hour surgery. I would then drive up from Eugene and arrive while Peggy was still in recovery. I hadn’t even finished proposing this before Peggy objected so strenuously that I didn’t say another word. We sometimes talk about the fact that, should she die, I will have no one to care for me as I am caring for her, nor will I have someone who trusts me to make medical decisions for her as she would make them for herself.

In caring for Peggy, I am observant and intuitive, but I’m also moody and tend toward depression. There are days when I’m gregarious, and there are days when it pains me to talk to anyone. For three months or more, I’ve also been having a problem with my left heel, which hurts so much at times that I limp (today, both of us are limping). At its worst, the pain is like that of stepping on a nail, and despite wearing two to four inserts at a time (the number depends upon which shoes I have on), the problem has gotten worse. I’m to see a podiatrist in three weeks. My foot pain is made all the more burdensome by the fact that Peggy has so little strength and energy. No matter, though, things are as they are, and they could be worse. I often tell myself that I won’t be able to bear it if even one more thing goes wrong, but then it does.

March 20, Our Day Started Stupid

As I mentioned, our day started stupid. All of Peggy’s doctors except her new one are in Eugene, and we had driven ten miles up I-5 before realizing that we had left her new doctor’s address on the kitchen table. Upon googling him, Peggy found that his office is next door to the hospital in Albany. I had thought that he was next door to the hospital in Corvallis, but what could I do but trust the internet? Minutes after exiting the Interstate in Albany, we got lost. What with roadwork, the absence of a paper map, and Peggy’s iPhone (I don’t even have a phone) not being set up to give us directions, it took us quite a while to find the right address. Fortunately, we were on time. Nick’s name not being visible outdoors, I went indoors to inquire. 

The three people at the front desk did their best to understand what I was trying to say but because I have a speech impediment that makes talking difficult before late morning, I had to write the name Nicholas Tedesco on a post-it note. They had never heard of him, but upon looking him up, one member of the trio said that I was at the wrong town and hospital. While I drove to Corvallis, Peggy tearfully called Nick’s office to say that we would be an hour late. Fearful that the voice on the other end of the conversation would cancel her appointment, Peggy began to cry as she said, “I have to see him today.” The clinic’s operator then helped us to get there by giving detailed directions through fifteen miles of roadwork and redlights.

Hip pain was what initially drove Peggy to her internist in February, 2025. Four months later came the dreaded diagnosis, and although five rounds of radiation quieted the tumor, the pain returned when her chemo regimen failed in early January. Despite Marc’s assurance (Marc is her oncologist) that the tumor on her ilium is too big to remove, I asked Peggy to see a surgeon who specializes in bone malignancies. My suggestion wasn’t based upon the thought that Marc was wrong, but rather my hope that an oncological orthopedic surgeon could protect the hip from developing what we were told would be an inoperable fracture. Although she worried that Marc’s feelings would be hurt, Peggy finally agreed to see Nick.

Two weeks ago, Peggy started on a new chemo regimen about which Marc made the strange statement, “It gives me no pleasure to do this to you.” The first two post-treatment days weren’t bad, but as the drugs continued to flow into her body from the pump around her waist, she ended up moaning in bed for much of the following week. Her entire body hurt; she was too nauseated to eat; her right hand trembled; and she couldn’t stop shivering. Yet Marc had only started her at 80% of a full dose, and the side effects of chemo worsen with every additional treatment. I seriously wondered if she could bear even one more treatment, and my own prospects for holding up to her suffering weren’t looking good either.

Nick offered three options. The first—continuing chemo—fell on deaf ears because of her reaction to the one she’s on and Marc’s apparent lack of other options. Nick’s remaining suggestions consisted of either a small surgery or a big surgery. The small surgery could be done in three hours on an outpatient basis, and would involve placing three hollow screws in the upper bone of her right hip, ablating the tumor, and filling the area with cement. If successful, this would stabilize the bone and remove the metastasis (only time would tell if it had been entirely removed). If unsuccessful, Peggy might be unable to walk and would have to undergo the big surgery to regain function. 

Another option would be to have the big surgery instead of the small surgery. This would mean the replacement of both the upper and the lower bones of her right hip (in most hip replacements, only the lower part of the joint is removed). This would get rid of the cancer in her hip, but healing would require many months, and the worrisome spots on her lungs would remain untouched along with the possibility that cancer had spread to other parts of her body. Either surgery would require that she stop chemo immediately, and this could allow the cancer to spread. Peggy followed Nick’s advice and chose to have the small surgery, which will be done on April 1.

March 16, Falling Into Walls

 

Last night, Peggy fell into walls and doors when she awakened to use the bathroom. She didn’t call for help; she instead tried to fall quietly so she wouldn’t awaken me. So it is that we each try to protect the other, but last night was a bad time for her to do so. Side effects from chemo can develop even after chemo is stopped and have been known to become permanent. Peggy and I agree that death would be preferable to taking another dose of the poison she took two weeks ago. I would even fear for her life if she tried to endure it, so I can but be grateful that surgery offers another option.

It is now late afternoon, and she remains dizzy; can’t stop trembling; needs help walking; has vomited coffee-colored liquid; is too sick and exhausted to stay out of bed; and has only eaten a quarter serving of fruit all day. She has a phone number that her oncologist ordered her to call about such problems, but she refuses to call, partly because she is scheduled to have an infusion to strengthen her bones on Tuesday in preparation for surgery, and she’s afraid that her oncologist will cancel it if he knows how sick she is. I have her medical power of attorney, so I could call on her behalf, but the situation isn’t so bad that I feel that I must, plus I share her concern about the infusion. 

Both of us felt like idiots when we arrived at her new doctor’s office an hour late. When she called to tell her doctor that we would be late, the woman she spoke with couldn’t have been nicer. Anytime one calls a doctor in America, the person who answers the phone asks for full name and birthdate, so the woman probably surmised that age had made Peggy and me rather stupid. This is a common assumption, but the fact is that illness (I have my own problems that I haven’t mentioned), stress, and medications (I take narcotics and combine various types of sleeping pills) is a far greater challenge to our intelligence than age.

I concluded from our difficulty in finding the doctor’s office that I had failed Peggy. After all, she is the one who has cancer and is sick from chemo, so I should have known how to get there ahead of time. In my defense is the fact that my thoughts move as if in slow motion, and the nightmare that has become our normality has lessened my ability to comprehend and concentrate. Even so, I failed her repeatedly by not taking the time to double check that we had the proper paperwork; by not knowing how to get there in advance; and by not pulling to the side of the highway to look the address up for myself when what Peggy told me didn’t sound right. 

While it is true that Peggy is more intelligent than I in many ways, it is also true that she is sick from cancer; is being poisoned by chemo; and has never been good with maps or computers—including I-Phones. I love maps, and I’m good enough with computers that I haven’t needed technical guidance since the Dos-prompt days. Earlier today, she and I programmed her phone to give verbal navigation instructions, a job that took under five minutes. She had horrified me by seriously proposing that she ask a friend’s grandson to do it for her, so I don’t know if she would have undertaken the job without my help, although she could have easily done it.

My inability to verbalize her new doctor’s name so that the women at the first clinic could understand what I was saying added to the feeling of inadequacy that a poor speaking ability has plagued me with since childhood when I stuttered and couldn’t pronounce my own name because three of the six letters in Lowell is a letter than I couldn’t say. Then, five years ago, I was diagnosed with a condition called spasmodic dysphonia, which is worse in the morning. I had so much trouble in that clinic that I couldn’t even understandably spell the word I was trying to say. 

I later envied Peggy’s new surgeon because he spoke and moved with a self-confidence that I experienced in early and mid adulthood, but began to lose with age. Then, ten months ago, came Peggy’s illness, and the bottom has been falling out of my—and her—intelligence ever since. As my brother said, “We all draw the short straw at some point.” 

People sometimes tell us that we’re brave. I don’t know how Peggy feels about hearing this, but I don’t feel brave; I feel like a rat who is running frantically through a maze that has no exit.

A little history followed by where we are today...

Eleven months ago, Peggy complained to her internist of pain in her right thigh. He first thought that she needed a hip replacement. Her friend Walt, who ended his life three years ago because of cancer, had taken the same path with another doctor, but in his case, he went through with a hip replacement. By late May when Peggy’s problem was diagnosed as stage four pancreatic cancer, I was having to lift her leg so she could get into cars. Several rounds of radiation drove the cancer in her hip into remission.

Marc, her oncologist, decided in December that she had a chance of greatly prolonging her life by having her spleen and lower pancreas removed and hoping that the cancer on her hip remained inactive. 

Unfortunately, two of the six lymph nodes that the surgeon removed came back malignant following her February 13th surgery. Marc concluded from this that the cancer might have spread. Ten days later a post-surgical blood test called the CA-19-9 confirmed that the cancer had spread. To discover the location, Marc ordered her second CAT-Scan in three months. 

The radiologist wrote that the tumor in her hip hadn’t grown, and he saw no evidence of tumors elsewhere, with the exception of some spots on her lungs that weren’t there in December. However, when Peggy told Marc that she was again experiencing pain and loss of function in her right leg, he concluded that what he had thought was a new tumor was probably a resurgence of the cancer in her hip. 

Because her previous chemo regimen had stopped working prior to surgery, Marc ordered a new regimen which she will begin on Tuesday. It will take four hours to get the drugs started, and she will spend another 46 hours receiving additional chemo at home. This chemo is so body-wrecking that it could prove unbearable, in which case Peggy will receive palliative care only. 

As the cancer on her hip grows—as it is predicted to do at some point even if she tolerates the chemo—her hip could break, and breaks in cancerous bones are irreparable. This would be especially devastating to someone like Peggy who walks six hours a week. When Marc said that the hip tumor is too large to be removed, I asked that Peggy get a second opinion from an orthopedic oncological surgeon. She initially demurred for fear that Marc would interpret it as a lack of confidence in him, but later agreed that a second opinion was a good idea. Kirk, our internist, concurred and complimented us on our choice of surgeons.

Less than a month ago, we were flying high in the belief that she would live indefinitely, so to drop this far this fast has pushed me, at least, to what I fear might be the edge of sanity. Peggy cautions against allowing cancer to define our lives, yet I’m finding it ever harder to rebound.

Fear of Peggy’s weakened immune system succumbing to an infection had kept us in isolation until last week when we entertained some longtime friends. Then, this week, an Episcopal priest named Ryan brought communion and visited for nearly three hours. Ryan voluntarily wore a mask except when he took it off for a moment to drink or pose for a photo.

My college friend, Lynn, might be the only person in my life who has experienced what I am going through, and his wife, Christi, might be the only person who understands what Peggy is experiencing. Several years ago, Christi was diagnosed with an aggressive brain cancer called glioblastoma. Her M.D. Anderson oncologist said there was only one treatment, and while it drove Christi’s cancer into remission, it nearly killed her, and it left her immune system so compromised that she and Lynn live in the same virtual isolation that Peggy and I are experiencing. Lynn and Christi believe that the prayers of their family and fellow Christians saved Christi.

Although I don’t believe in personal prayer, I have experienced the sacred through the Episcopal Church since I was an 18-year old convert from the fundamentalist Church of Christ. The Eucharist; the ancient hymns; the Book of Common Prayer; the glow of stained-glass; my congregation’s hand-carved altar, and, most of all, the coming together of diverse peoples to love God as they understand God, and to give the support to one another that their love of God requires, are all precious to me. 

I also experience the sacred through Peggy and in art, nature, books, cats, compassion, poetry, integrity, and many other things, both natural and human-made. I see the sacred in my friend, Tom, who, when I asked him to bring me two things from the grocery store, brought two bags that were overflowing with cake, cookies, flowers, and groceries—for which, Tom being Tom—he refused reimbursement. I also experience the sacred through your kind responses to my posts and letters; through the visits Peggy and I make to nearby Mt. Pisgah (see coyote); through the affection and acceptance of priests who know of my non-belief and are sensitive to my struggle; through memories of my online visits with Anna, Louise, and David, who are also friends from church; and through many other things. 

 

Peggy’s illness has caused her beauty to ripen. I have always been proud to be seen with her, but never so much as today because she was never so beautiful as she is now. She told Jackie and Kurt that she no longer has the strength of a warrior in her fight against cancer, yet as I write these words, she is doing her thrice-weekly dumbbell workout. She and I agree that she is facing this ordeal better than I, although she is the one who has cancer. Unlike myself, Peggy is a private person, but because cancer has made it impossible for her to keep her pain and her heartbreak to herself, the intimacy of our relationship is greater than ever, both of us feeling fully naked and fully helpless at times. I admire her for being braver than I, but this makes me no less accepting of those occasions when she is unable to cope. My purpose in life is to support Peggy, no matter how severely her cancer wrecks her body. What, then, will be left to me if my reason for living is destroyed by her death? 

“You become. It takes a long time… Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.” —from The Velveteen Rabbit

The Worst News Yet

On February 13th, Peggy’s spleen, lower pancreas, and two lymph nodes were removed in the hope that she could return to a nearly normal life. She has been moaning in pain since the surgery but refuses to take narcotics. 

When we saw Marc, Peggy’s oncologist, on Thursday, February 26th, we knew from the moment he walked into the room that the news was bad.

Marc said that Peggy’s post-surgical blood tests indicated that her cancer had spread, but that he didn’t know to where. I am writing this on Monday, March 2, and she is to have a CAT-Scan with contrast later today. If nothing shows-up, he will order both a PET-Scan and a blood test for micro cancers. He also wants to start her on a new chemo, one that might extend her life by two months but is likely to cause illness or unbearable side-effects. Peggy has thus far expressed opposition to this chemo. 

Coming as it did right when we were confident that the surgery would prolong her life, Marc’s bad news—and the unrelievedly grim way he presented it—knocked our legs from under us. 

Peggy and I are ever grateful for the generosity of those who have called, phoned, texted, sent cards, and ordered gifts. During the past week alone, she received six cards and a bouquet. Also, one friend cooked us a meal; another friend ordered a meal delivered; and still another gave her what Peggy identified as a hundred dollar clothing button. In terms of numbers, the majority of our support has come from Peggy’s friends in the button collecting community, but we’re also well-supported by members of her family and by Lynn and Christi, a married couple that we met in college. Then there are my two Episcopal priests and other members of the Episcopal Church I attend. I must also give credit to my blog buddies, my two siblings (a third sibling died in February) and the members of my online support group. Our most distant supporters are Michelle in England and Kylie in Australia, and our nearest ones are Kevin and Sarah who live next door. 

People have offered to sit with Peggy, take her to appointments, do our shopping, and travel from a distance to help us in our home. My church friend, Tom, has often expressed frustration that I won't allow him to “do things” for us, but there could be no more precious gift than his willingness to listen to my feelings and to, on one occasion, hold me when I cried. Ironically, my only bad experience in turning to others for support came within days of Peggy's May diagnosis when two members of her family accused me of being a weakling when I asked them to be there for me while I developed the strength to be there for Peggy. Of all the people in the world, they were the ones whose support I felt the surest of, yet one of the two accused me of throwing a “pity party,” while the other said, “Get over yourself.” Peggy told me today that their attack has been the hardest thing to bear of all the hard things that she has had been through, and I can say the same. 

I think it likely that many people feel as they did. I also believe that, to such people, manly strength is well-represented by the false Stoicism of Peggy’s father who, when asked if he’s okay, will say, “I’m fine” through teeth clenched with back pain. Such a man stays hidden behind a drawbridge, and when he dies, it will be without anyone having known him. Perhaps, I go too far in the other direction, but what I speak is the truth as I see it; I speak it unashamedly, and I am okay with people rejecting me for it unless I trusted them awfully, awfully much. 

I try to hold to the thought that the two of whom I speak are but two people out of the more than a hundred who have showered us with abundant goodness.

As I was finishing this, Peggy returned home from her CAT-Scan faint, nauseated, and trembling. As bad as that sounds, it was an improvement over how she felt the last time she drank contrast. Until today, I had accompanied her to every chemo, every procedure, and every doctors’ appointment that she has had (out of an estimated two per week), but because I had an online doctor’s appointment today, Shirley, the first friend we made when we moved to Eugene in 1986, took her. Thank you Shirley. Thank you all.

We Receive Sad News

 

I started the following in answer to Ellen’s question following my last post, but decided to make it into a post. The first photo was taken during such a surgery. The second photo is of the type robot that is used. The third photo shows the medical staff’s positioning.

When Peggy’s surgeon, Diego, called me after her surgery on Friday, he pronounced the removal of her spleen, lower pancreas, and six lymph nodes (for biopsy), a success. During the following days, I reminded myself repeatedly to check on her biopsy results, but was so confident that they were negative that I still hadn’t done so when I went to bring her home from the hospital on Tuesday. Upon reaching her room, I found Peggy despondent, and when I asked her why, she said that two of the six lymph nodes were malignant.

On the drive home, she said that the worst part of learning her biopsy results was having to tell me. She then asked that I keep the malignancy a secret because, “I don’t want people to know I have failed and to treat me with pity.” I could but say that even brave and intelligent warriors lose battles, and that she is the only person on earth who would judge herself a failure.

On Wednesday, Peggy told her older sister, Dianne (who is certain to tell the rest of their family), about the biopsy, so I no longer knew what she expected of me. When she told someone else today (Thursday), I asked if she still wanted me to keep the news a secret, and she said, “I guess not.” I could hardly interpret her response—“I guess not”—as a ringing endorsement to tell who I pleased, but because they are going to find out anyway, I had rather they get the news directly (from Peggy or me). I also don’t want anyone to feel bad that they weren’t told sooner because I have been in that boat, and it hurts.

I’m in an online support group with a very nice lady who was married to a terminally ill woman who didn’t want anyone to know she was terminally ill. By reluctantly agreeing to conceal this information from friends and family, the ”nice lady” and her spouse lost 100% of the support they would have received, and now that the ailing spouse is dead, the survivor is struggling to forgive her for making so hurtful a demand. 

Peggy sees her internist tomorrow (the 20th), her surgical oncologist on Monday, and her chief oncologist on Thursday. Each appointment will be awaited with what have become the dominant emotions of our lives, hope and dread. Meanwhile, Peggy is despondent for having, “...put my body through a horrible surgery for nothing.” I can but hope that her doctors have something good to say.

A Post-Surgical Update

The bicycling photo of my sister, Carol Gay, dates from 1969, when she was fourteen. In case you missed my last post or two, I’ll mention that Gay died on Friday. She was 71.

Peggy’s doctor failed to order the patient controlled narcotic pump he promised, so her pain level was six and rising when I reached the hospital at 7:00 p.m. Friday. While walking the stairs to the seventh floor, I got the call that my sister, Gay, had died, but didn’t answer it.

Peggy is not one to cry wolf, but Sophie, her busy and distracted nurse, had to be reminded repeatedly to call Peggy’s doctor, and even then we couldn’t be sure that she had done so because she was nowhere to be found. By 8:00 o’clock, Peggy’s post-surgical anesthetic had worn off, and she was crying and moaning. I called Peggy’s doctor myself, but his answering service wouldn’t put me through because, “Your wife’s nurses are supposed to control her pain, and if they can’t, it’s their responsibility to call her doctor.”

Peggy then demanded to see a hospitalist (a doctor on staff at the hospital), but was told that her surgeon hadn’t okayed it. Twenty minutes later, Sophie brought her two oxycodone tablets which Peggy refused to take, saying that they weren’t nearly enough; that her nasogastric tube made it impossible to swallow; and that she’s 74-years-old and has trouble swallowing pills on her best days. When Sophie offered to turn her tube off and kept urging her to “give the pills a chance,” Peggy asked to speak to the unit’s charge nurse. A half hour later, Sophie injected morphine into Peggy’s IV, and her pain level slowly dropped to 3.5. At 9:00 o’clock, Melissa, the charge nurse, came by to say that Peggy’s doctor-on-call had ordered a Dilaudid-powered pain pump and had authorized an IV injection of Dilaudid to tide her over until the pump was installed (Dilaudid is many times stronger than morphine).

I’ve spoken to Peggy twice today, but won’t visit her until tomorrow unless some new calamity arises. Although I spent much of today sleeping, I’m as tired now as when I went to bed last night. I am also finding it ever harder to power my way through situations that I can’t do much to remedy. Peggy told Melissa that she didn’t blame Sophie for the fact that she had spent two hours in horrific pain, but I mostly remember Sophie repeatedly saying “I’ll be back in just a minute,” before disappearing down long and empty corridors for twenty minutes at a time as Peggy’s pain worsened. Assaults on healthcare providers are a growing problem in America, and I had fleeting fantasies of running amuck myself because of Sophie’s emotional detachment. God help anyone who trusts her caregivers to stay on top of things.

Since coming home, I’ve bounced between obsessing both over Gay’s death and the world’s suffering, especially the suffering of animals in vet clinics who can’t tell their providers how much they hurt, and of wild animals who have no providers. During America’s Civil War, the Union blockade made it impossible for the South to import morphine with which to ease the pain of wounded soldiers (among them my relatives), and then there were the thousands of wars that were fought before morphine even existed. Peggy suffered increasing agony for two hours, yet I never lost faith in the thought that, if we persisted, she would eventually receive the help she needed even if I had to knock on doctors’ doors at midnight, but what if she had been in Gaza? What happens when the unbearable must be borne? Where is the justice? Where is the mercy? Even if a case could be made that our sorry species—from infancy on—deserves to suffer, how does this justify the suffering of dogs, cats, and polar bears? People who are more religious than myself have much to explain.

The photo to the left was made of myself, my half-sister, Anne, my half-brother, Jim, and my sister, Gay, on the day of our Mother’s funeral in 1988. I’m leaving the arrangements for Gay’s funeral to our eighty-eight year old sister, Anne, although when she guessed Gay’s age for an obituary, she was off by twenty years. It’s easy to tell myself that I should be doing more for Anne—and for Peggy—but making myself follow-through seems impossible when I can’t seem to stay out of bed. Today, though, I feel better than I did yesterday, and I will stay out of bed.

It is now Sunday, and Peggy’s  throat had recovered enough from being intubated that she no longer talks like Gay, a 55-year smoker. I will now breakfast, shower, and pay her a visit.

 

Diego’s plans to send Peggy home today (Monday) had to be cancelled when her always low blood pressure suddenly went high, so now I have no idea when she can come home. For her part, she wants to stay in the hospital another night because she worries that the BP meds will drive her pressure so low that she will become dizzy.

Friday, 2:25 p.m. Pacific Time

This letter and the ones that follow are to the forty-one people whom either Peggy, or I, or both of us, want to tell about today’s surgery, and I will also post it to my blog. 

It’s now 10:30, and Peggy was taken to surgery a half-hour ago. Her 384-bed hospital was running behind because Peace Health Sacred Heart Hospital (Peace Health is a Catholic run chain that owns several Northwestern hospitals of which Sacred Heart is but one) laid-off 1% of its nursing staff this week (for the well-being of its patients, it claimed), and nurses are calling in sick to protest. 

Peggy started working as a nurse at Sacred Heart (as it was then called) in 1986, and retired 26 years later. Then, as now, nurses called their employer The Sacred Wallet. She became so disgusted with hospital management that she couldn’t wait to retire, and by the time she did, she had lost all respect for management’s honesty and goodwill. However, the hospital’s staff isn’t its management, and she is being treated very well by the people who matter.

Peggy has crummy veins, IV-wise, so she won’t tell her nurse that she too is a nurse until after he or she gets her IV started, because every time she has, she had to be stuck repeatedly. Today, her IV had to be installed in her elbow, so Jon, her anesthesiologist, promised to move it during surgery so she can bend her arm when she wakes up. 

Her five-hour surgery is called a Distal Pancreatectomy Splenectomy, and Jon said that, after that much anesthesia, she won’t remember a thing for the rest of the day. Her main concern about surgery involved her objection to the use of a robot, so she had previously asked Diego, her surgeon, if he really had to use one, and he explained that robots don’t have tremors. This failed to allay her fears

Neither of us could sleep last night, yet I have to be alert to take Diego’s call or calls, so I’ve been drinking cup after cup of coffee and taking some Ritalin that Peggy was prescribed for chemo-related fatigue but refuses to use. Oddly, given that she’s married to someone who has a casual attitude toward drugs and has been taking narcotics legally for 15-years, Peggy is very anti-drug. In fact, she tried to avoid being put to sleep for surgery, but was denied that option.

I envy Peggy her bravery. Of course, it could be that if I were in her position, I too would be brave. I don’t say this to minimize the tragedy of pancreatic cancer but to say that I had a thousand times over rather be the one who has it. I’m her husband, and I’m supposed to protect her, but I can’t, and that makes me miserable. However, I can be a lion in her defense, and I am too, so much so that she had to reign me in last summer when I became too aggressive in dealing with her caregivers.

It’s now 10:45, and I just got a text saying that the procedure had begun. I don’t know why they’re just now starting, but the delay must have been hard on Peggy who would have been lying on a hard table in a cold room. Warm patients have better surgical results, so I hope she has been demanding warm blankets.

Now comes the waiting and the hoping that Diego won’t call for another five hours because if he calls sooner, it will probably mean that when he blew her belly up with gas, he found that the cancer had spread to other organs in which case he will sew her up, and she and will be very, very sad.

Until her oncologist praised me for going to her every appointment, it hadn’t occurred to me that I could have stayed home, not that I would have because, since her diagnosis, our lives have become so intertwined that I have no life of my own. I eat, sleep, and breathe her cancer, and I’m hell’s own googler and doctor questioner when it comes to seeking information. My every thought is either of Peggy, or it will soon return to Peggy. I have her medical power of attorney. I have her advance directive. I call her doctors by their first names because they’re her employees, not her betters, and I’m as knowledgeable about her condition and treatment as age and misery will allow.

My 71-year-old sister, Gay, has smoked since her teens and done hard drugs since her twenties. Two weeks ago, she got so high on meth one bitterly cold Mississippi night that she visited her neighbors naked. I don’t know if the meth was to blame, but a short time later, she had a severe stroke and is now in a hospital room all by herself awaiting death. Gay’s dead husband’s brother and Gay’s obviously high housemate (neither of whom I had met) have been courteous and good about keeping me updated. The best case scenario is that Gay won’t linger because I’ve seen what awaits people who survive devastating strokes. I feel like I should stop writing to you and call her doctor because I am, after all, her nearest relative, but I’m at my limit at to what I can endure. I’m sorry, sister.

Peggy’s last words to me were, “I love you.” I’ve heard her say those words thousands of times, but never before had I wondered if I would hear them again. Even when she climbed high mountains on which deaths were frequent, I believed that she would be careful, that her companions were trustworthy, and that the odds were good that she would come down alive. Now, I don’t know what the odds are. I just know that fear and sadness have dominated our lives since May. 

Speaking of high mountains, after all she endured, she almost died on 762-foot Diamond Head in Hawaii because she climbed it on a hot day an hour after a dehydrating plane ride from Oregon. She got most of the way to the top before she collapsed from the heat and had to be airlifted to a hospital. That experience combined with what she later told me about the risks she and Walt, her primary climbing partner, took on high mountains convinced me that my confidence in her prudence and her companion had been misplaced. Summit fever is a sometimes fatal psychological problem that afflicts people who should turn back but don’t, and Peggy had it so bad on Diamond Head that strangers who watched her vomit stepped in to physically restrain her when she insisted upon continuing upwards.

I used to think that doctors had a special way of giving people bad news so that it wouldn’t seem bad beyond what they could endure, but they don’t. Her oncologist’s first words were, “It would be reasonable for you to choose palliative care only, in which case you will probably die in six to eight months.” That was nine months ago, and while the chemo has kept her alive, it has made her perpetually sick, tired, nauseated, and chemo-brained, plus it has made her food tasteless. Worse yet, chemo drugs invariably stop working, which is why only a tiny fraction of one percent of pancreatic cancer sufferers are alive five years after diagnosis. 

Today’s surgery was originally scheduled for January 27th, but because her doctor’s previous surgery took hours longer than expected, he rescheduled her surgery even as she lay in pre-surgery room number 13 after a day of fasting and bowel prep, plus getting out of bed hours early and enduring four IV sticks. Today, is Friday the 13th, and she was again assigned to room number 13. My friend, Bob, tells me that thirteen is considered a lucky number in some places just as black cats are considered lucky in the British Isles. One can but hope.

As most of you know, Peggy is well-known among American clothing button collectors, and she stayed up late last night putting together one last pre-surgery button card. My first childhood book was about a squirrel who so filled his house with nuts that he had no place left to eat, sleep, or sit, and damned if that book didn’t predict my marriage. You wouldn’t think that a woman could fill her house with something as small as buttons, but she’s on her way, so I can but celebrate the friends she has made and the joy she has found in these tiny works of love and artistry. In fact, her primary support during this ordeal has come from her fellow button collectors who (unlike a few relatives whom I had mistakenly imagined would constitute our primary support) continue to text, call, and send cards and gifts nine months after her diagnosis. I love you, dear button collectors, and I thank you with all my heart for your goodness to your friend, my wife. One never knows how much her life matters until such a fate as pancreatic cancer brings it to an abrupt halt and replaces it with a seemingly endless nightmare.

Still no news, and that is good because no news means that the cancer hasn't spread to nearby organs. 

I'll be in touch,
Lowell

An Update Regarding Peggy's Surgery

 

While reading the following, please bear in mind that I hold a power of attorney for Peggy's health care, and this enables me to receive any and all information about her care and to speak and act on her behalf, which, with her added verbal permission, I often do.

As my regular readers know, Peggy has stage four pancreatic cancer and, after months of chemotherapy, was scheduled to have a distal pancreatectomy/splenectomy (aka the removal of her spleen and lower pancreas) on January 27th. Because the cancer has spread to a bone in her hip called the ilium, she will have to undergo a second surgery to remove that tumor. Radiation treatments had initially driven the cancer in her hip into submission, but now that it is showing signs of becoming active again, speed matters, both to keep the cancer in her hip from becoming too big to remove, and to keep the pancreatic cancer from spreading beyond her hip. Last week, she learned that her surgeon's website had listed her January 27th surgery as a "robotic (XI) assisted laparoscopic pancreatectomy duodenostomy whipple." This threw us into something akin to a blind panic because we didn't know if her insurance would cover the last minute change to the correct surgery. Fortunately, insurance had already approved the correct surgery, and no one at her doctor's office seems to know why her doctors' website named an incorrect surgery. This brings us to this week... 

Peggy’s surgery was scheduled for 12:55 on January 27th. At 2:00 o’clock, a nurse manager named Laura Smith came to Peggy’s room and said that a prior surgery was taking hours longer than expected, and that Peggy’s surgery had been cancelled. As Peggy collapsed in tears, Laura asked that we call her if there was anything she could do; handed us a letter stating that the hospital “would like to express sincerely (sic) apologies for the cancellation of your surgery/procedure today:” and left the room without saying another word.

When we got home at 3:30, I called Laura to ask that she use whatever influence she has to get the surgery rescheduled as soon as possible. She said that Peggy’s surgeon, Diego Muilenburg, had already promised to do the surgery ASAP, by which he meant late this week or early next week. When I said that Diego’s “ASAP” in December had meant six weeks, and I was afraid that we might face another long delay, Laura repeated what she had already said. She did not seem pleased to hear from me.

Diego called yesterday evening at 6:30 and gave Peggy a tentative date of February 13th for her surgery and said that he wasn’t at all sure if he could do it then because he didn’t know if a robot would be available. I immediately wrote to Peggy’s oncologist, and asked if he could find her a surgeon who could operate sooner. His office called this morning and said he could not. Diego’s office also called this morning and confirmed the February 13th surgery date.

By this morning (January 28th), Peggy’s low mood had rebounded. It’s typical with us that she falls fast but recovers quickly, whereas I might appear to fall slower, but once I am down, I don’t soon get up. I work very hard and very well in many ways to support Peggy, but maintaining a buoyant mood is more than I can do. Because getting this surgery done before the cancer spreads further is Peggy’s only shot at life, I think it could have been done sooner than two months. Whatever the reason it wasn’t, I see no evidence that her surgeon places much importance upon her life. When he called her last night, she complained of having to go through the extensive pre-surgical preparation a second time. When she mentioned the fast and laxatives as among her complaints, he didn’t say he was sorry that she had to endure that. He instead said that not ordering something so completely unnecessary would be a learning lesson to his team.

Peggy is Cleared for Surgery

Peggy’s oncologist called on Sunday and again on Monday (I never stop marveling at that man’s dedication) to discuss her situation in some detail, but I’m going to cut to the chase by saying that Friday’s PET-Scan showed no new tumors.  This means that she is still on the schedule for a January 27th pancreatectomy, and, once that is done, for an excision of the malignancy on her ilium. In the best case scenario, this would leave her cancer-free, but no one is talking about what the odds are, although her primary oncologist has made it clear that he is subjecting her to a much more aggressive treatment than usual.

You might think that I would be jumping up and down with joy about now, but after months of unremitting tension, I’m so exhausted that I feel numb. Although our excellent news might bring me more relief than jubilance, I know that my misery would be boundless had the PET-Scan shown a new tumor.

I am sincerely grateful to all those who have emailed, sent gifts, brought food, come to visit, listened to our fears, offered to stay with us, held us when we cried, loaned us medical equipment, sent greeting cards, offered encouragement, and insisted that we come up with some way that they could help. Although I’m often too busy, too distracted, and too exhausted to show gratitude for this bounteous outreach, I am acutely aware of the fact that those who offer it are literally enabling us to survive a life-or-death ordeal. Perhaps there are people who can face such crises without the generous support of others, but I am not among them.