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

 

Peggy’s April Fool’s Day surgery (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 Hospital patients and their families.

The surgery involved removing a walnut-sized tumor from a bone in her hip called the ilium, and then securing 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 while she heals. 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 would 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, his livelihood is partially dependent upon Marc’s referrals, and while patients come and go, relationships between 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 later 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 a degree of acceptance that we are unable to seek 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—who 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 talking 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 entrusts 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). 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 but 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.