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?