Love in the Time of Cancer part I

This paraphrased title, of course, is borrowed from one naming a different disease - “cholera”. In Gabriel Garcia Marquez’ original work, “cholera” is a play on words. In Spanish, “cholera” also means choler - anger, irritability. Cancer, by contrast derives from “crab”, and that - in verb form - is something we have surely been doing off and on, especially since chemotherapy began. There has indeed been much to crab about, though our emotions have been by no means limited to negative ones subsumed by ‘crabbing’.

My wife, Gigi, was undergoing routine pre-op testing for a minor knee arthroscopy scheduled for mid-January 2024. Thus, just after onset of the New Year, she visited her PCP for pre op clearance. She came home from his office and told me he had ordered a CT scan of her abdomen - normally not part of such a workup. She had been having intermittent abdominal pain and some “bloating”, you see, since Christmas, but thought little of it. Then, for the first time, she showed me her abdomen. That January 7, life changed forever in an instant. Normally flat, even “scaphoid” in medspeak, Gigi’s abdomen was distended to the size of an 8 month pregnancy! The skin over it was tense to the touch and one touch with two hands spat the word, “ascites” at me. In that moment of revelation, I knew Gigi was under sentence of death and it might be carried out very soon. Numerous facets of the finality of both of our lives has occurred to me, regularly, since that moment.

Geneva Gae (initials G.G. euphonized into Gigi) grew up in West Virginia. She came from a working class family, initially poor, but whose circumstances improved by her dad’s metal working skills at Inco Metals in Huntington. His skill was such that he as left to work throughout WWII, not drafted into the military as an essential worker. He was a very decent man, but like his cohort of the time, he expected little of his three daughters, of which Gigi was the youngest. Her sisters completed high school; the middle one even learned to drive. Only Gigi went to college - at Marshall, right there in Huntington. After graduation, she married, got out of town & stayed married long enough to have a much-loved daughter, Amanda, in 1978. Gigi’s mother died when Gigi was 8. This scarred her deeply and has emotional repercussions to this day - especially regarding public displays of emotions of grief.

My own thoughts about death have been with me a long time. I am one of those people blessed or cursed - I’m really not sure which it is - with near constant awareness of my vulnerability and mortality. This consciousness has led to many mental associations. The older I became the more mysterious they become. The first personal contact with death was that of a junior high classmate in about 1967. I wasn’t close to him, but remember his frailness and peaked chest shape (pectus carinatum). Jerry Mechanic had had heart surgery and went back in for another operation. He never returned, having dies in surgery and I couldn’t really process it. I was able to let it go with a scar of sorts, in the shape of a question mark.

In the past decade or so, being almost 80, I began losing people I had grown up with and was closer to. There was something about the knowledge that their entire lives were complete - over, finished - that I am unable to fathom. Why is it that I get to know their life’s book is closed? I struggle to characterize this distinct mystery I experience. It partakes of the fact that I get to know of their beginning, some parts of the middle - the overall course of their lives, the big picture - and their end. That the whole thing is done, forever; that in a few generations, their names and lives will have been entirely forgotten. I sometimes wonder if I am the last person to ever remember even the names of some of my beloved teachers, like two old maids I recall from junior high school. They were already old, childless and surely long dead. I remember several of them warmly; I love their memories and that, too, is mystery. Even tombstones, meant as memorials, fade and crumble to dust when viewed in sidereal time.

Then there is the dimension of finality I am experiencing as a result of Gigi’s illness. That first moment I saw her abdomen, I knew life as we knew it was finished. That this chapter of our lives, however long or short, would be very different. The finality of this inflection point is overpowering and all I can do is adapt as best I am able from day to day, moment to moment. As I write this, editing to a prior version, we learn that Gigi’s white blood count is very low, making her vulnerable to serious infection. We await a call from the oncologist any time now, to see what’s next. Many days are like that.

The few remaining hopes and dreams we had - as for travel to Assissi (a place Gigi particularly loves) or some other pleasant experiences - are definitively gone - starkly shrunken by mere hopes for a “good day” upon awakening. Unsurprisingly, sometimes we watch videos of thoughtful theologians and believers to hear their views on theology and some form of afterlife. Pending loss of a beloved who feels like a large part of one’s self, will promote that kind of exploration.

This is the case, even as we interact with each other every day as we always have, just focused repeatedly on solving the next problem presented by the cancer and/or its treatment. My eternal existential angst has notably ebbed; I now live in a great sense of purpose in taking care of Gigi and am intensely alive and in the moment. I become that task. Since I am at proper weight and exercise two hours daily, I have plenty of energy. Fears overtake me on occasion, mostly in those empty, undefended moments awake in the small hours of the night. I comfort myself with the Serenity Prayer, mentally repeated over and over like a mantra. That and conjured images of one of, or both, our much-loved Ragdoll cats cuddling with me, as they have the grace to sometimes do of their own accord (the only way cats do anything), eventually comfort me.

Back in 1980, as Gigi’s marriage was dissolving, mine was independently disintegrating at the same time. In Harrisburg PA, she was an ICU nurse in the same hospital where I worked as an anesthesiologist. One day I was bringing a just-finished open heart patient to the ICU and saw this tall, thin, breathtakingly beautiful girl (we knew the definition of the word and could call girls, ‘girls’, back then in saner times) of about 30 in a hem-swishing, long, graceful, A-line nurse’s white skirt. I noted that, while it hid her underwear - so fashionably shown in those emerging days of semi-transparence of even professional feminine garb - it simultaneously revealed her most modest inner ways.

A friend once observed that Gigi looked like she just stepped off the pages of Vogue. Even today, chemo-bald, she has a model’s looks. The miracle was that she didn’t behave in the unapproachable, icy, “I dare you to hit on me” ways of most such gorgeous, naturally elegant-looking women - then as now. She remained the down-home open, even innocent, small town girl who did and still does uproarious barnyard imitations. I was agape at her breathtaking beauty. Though it was lust at first sight, after an hiatus, love blossomed later, after I had moved a hundred miles away and stopped seeing her for over a year.

The move away came about in response to a lack of support from the hospital and a threat from its medical director. I quit my job after federal indictment for Medicare fraud, mail fraud and a string of other manufactured charges* [see below, if interested], a mere few months after I started working. It wasn’t difficult to leave and move to State College, because Gigi and I had only been seeing each other for two months and I sincerely believed Gigi was just too decent, too good, too innocent to be romanced by the likes of me. I was then a very self-centered, entitled fellow, who offered a slick outside appearance, despite secret self-loathing. I knew I wasn’t real relationship or commitment material at the time and she was the quintessential example of ‘the kind of girl you bring home to meet your parents’. So, newly single, off I went to work at the community hospital in the shadow of Penn State University, with literally thousands of coeds as pickings.

Out of the blue, 18 months later, I got a phone call from Gigi. She said she wanted to ask me some medical questions, because a routine chest X-ray revealed bilateral pulmonary hilar adenopathy. This is considered to be pathognomic of lymphoma. She wanted to know if she might live long enough to see her 6 year old daughter grow up (remember her mother’s death). I said I didn’t know much about this diagnosis but I experienced a sudden empathy and heartache - the surprise realization that I had real feelings for her.

Happily, soon afterward, a mediastinoscopy/biopsy, showed this to be a very atypical presentation of sarcoidosis - not lymphoma - which caused no symptoms and went away without any treatment. We soon started seeing each other again, requiring lots of very early morning 90 minute drives from Harrisburg to get me to work by 07:00 in State College. We married about 6 months later in June 1985. My stepdaughter, Amanda, is now 46 and our son (together) Jonathan is 36. She is an executive in a drug/alcohol rehab, having worked her way up through the clinical ranks and he’s a Ph.D. in human genetics.

Of Jonathan, we are especially proud - but not just for his great intelligence. While pursuing his Ph.D. over 7 years, he read almost 1000 of the world’s great books, becoming a Doctor of Philosophy as of old, a genuine scholar, erudite; having knowledge of many things beyond his field of expertise. That’s what a Ph.D. used to be. Our pride in Amanda is different. Amanda married her high school sweetheart and has two teenage children. Though very busy, she balances career and family most admirably. (Jon is in a relationship of 2 years duration, having divorced after a 5 year marriage (of 2008) and a 3 year relationship which (fortunately) failed about 3 years ago. Both are OK with themselves and life. I will describe my Swiss son, Patrick, later.

All of which brings me to the recent past. The CT scan was done on the Tuesday before the MLK holiday weekend. The result was posted the next day, Wednesday, on the health system website. It confirmed my initial fear - reading “carcinomatosis”, most always a death sentence, but subject to a few, rare benign diagnoses, which, of course, we fervently hoped for - all the while waiting to hear from the PCP who ordered the CT scan. We knew the next step in diagnosis was paracenetesis - withdrawal of fluid to find cells which are either malignant or not. We waited and waited for him to call to arrange that procedure.

That very day, Wednesday, we emailed the PCP asking “what next”? - again, expecting him to call with his assessment of the scan result and to schedule the definitive diagnostic procedure. We never heard from him. We did finally hear from his nurse 6 days later, the Tuesday after the three-day holiday weekend - one week after the scan was performed and 6 days after the result was posted. Rather than schedule an outpatient procedure, she told Gigi to go to the emergency room! Of course, we could have done that immediately after seeing the CT result, as Gigi was already quite uncomfortably distended with ascites and abdominal pain. Since it was already late afternoon, this resulted in being held in the ER awaiting admission until 2 am, when I finally went home to get some sleep, while Gigi was finally admitted to the hospital for a paracentesis the next day.

Gigi was kept in the hospital for 3 days while numerous tests were performed. The paracentesis was performed on Wednesday morning. A few hours later, a hospitalist came to see us to tell us hat was next. He was under the mistaken impression we already knew that malignant cells were present in the fluid taken from Gigi’s abdomen - so we learned by “osmosis” that she had cancer. He went on to explain several tests were necessary to try to determine the primary cancer, as carcinomatosis - cancer cells/clumps seeding the peritoneal lining of the abdomen, is most always metastatic from elsewhere in the abdomen. To try to find the primary, then, she needed an upper GI endoscopy, colonoscopy and repeat CT scan with contrast. They thought the malignant cells were probably gynecological (especially ovarian) in origin but could not be sure.

The fact that Gigi had had a total abdominal hysterectomy and bilateral slapingo-oophorectomy 13 years ago, suggested that wasn’t likely - maybe impossible. So, at my behest, the operative and pathology reports were obtained from a rival health system, where the surgery took place years earlier. Miraculously, this happened quickly and showed that the organs were cancer-free and had been removed intact, in their entirety. No pieces of ovary were left in. So, the final diagnosis was “primary peritoneal serous adeno-carcinoma” - a rare cancer, originating in the peritoneum, itself. Turns out, it behaves like and is treated the same way as ovarian cancer.

Gigi then came under the care of oncology. We met Dr. Sarah M. just prior to hospital discharge. She was very kind and caring and we felt we were in good hands… She said she would be in touch shortly to make further plans. Among the discharge instructions, because Dr. Sarah is a medical oncologist (who prescribes the chemo), we were told to see a gynecological surgical oncologist at a different hospital as well. We were able to get an appointment (at another hospital in our health system (where gyne surgery was centralized for the entire health system) only 2 days later. We (Gigi, me and our son, Jonathan) went to the appointment. The young-ish guy came into the room, did not introduce himself and said, “What a day”, then “You’re an interesting one”. His demeanor was more like that of a character on a prime-time sitcom than a physician’s first meeting of a patient with a likely-lethal cancer. The whole meeting was head shaking, eye rolling inappropriate.

We all left independently horrified by this uncaring, self-centered individual, with the firm determination he would NEVER be Gigi’s doctor. Fortunately, when we told Dr. Sarah our decision to not involve him, she said she understood and got us an immediate appointment with another surgical colleague. Dr. Sarah really took us and the situation completely in hand. We saw her on a Monday. She managed to get everything necessary for first chemotherapy to begin, completed by that Friday! This included: a PET scan, surgical placement of a vascular port for chemo infusion, first appointment with the new gyne surgeon and a laparoscopy!! In today’s medical world, that was near miraculous. The laparoscopy was to visually observe the extent of the carcinomatosis and to obtain tissue for microscopic diagnosis and detection of the cancer markers present; these would be used to adjust chemotherapeutic agents. The findings were as expected - no surprises.

The first chemo was given - three agents - one week later. One agent is designed to disrupt cell division, mitosis. Another disrupts microtubule formation, these being an essential component of all cells’ internal architecture and transport; disrupting these particularly harms fast-growing cancer cells. The final drug inhibits cancer cells’ ability to cause ingrowth of blood supply into tumors, thereby denying them sustenance. The combination is thought to be synergistic. Unbeknownst to us, we had entered on a roller coaster.

As a testament to modern medical technology, at the end of that first infusion in the outpatient cancer center, Gigi was fitted with an auto injector - a device about half the size of a deck of cards - firmly taped to the back of her arm. It contains a drug called Neulasta, which causes the bone marrow to turn out extra white blood cells, whose production is reduced by chemo agents and results in immunosuppression. Anyway, this device injected its cargo 27 hours after conclusion of the three drug cocktail. Up until then, Gigi had virtually no side effects from the first round.

She completed the first infusion on Thursday. Friday evening around 7 pm the auto injector began its 40 minute subcutaneous injection. A few hours later, Gigi began to feel prodromal and by midnight had fever of 101 and shaking chills. We called the emergency number and were told to go to the ER. Off we went for what wound up to be hospital admission for a sepsis workup. It was, unsurprisingly, negative. I knew that the immunosuppression and possible infection, take time to develop; they are most unlikely on day two. I was all but sure this was a reaction to Neulasta.

The workup was negative, so Gigi was sent home Saturday with ongoing fever and chills with instructions to take acetaminophen. These symptoms continued until Tuesday, when they worsened and a measles-like rash appeared in addition. So, back to the hospital for another sepsis workup (again, unnecessary according to basic medical principles), which was also, predictably negative. Finally, on Friday (after 3 more days of exhaustion and emerging resolution to quite treatment entirely from fevers and rigors), someone decided to do what I was tempted to do at the very outset before we ever got to the hospital: give her steroids! This was done at 2:15 pm on Friday (one week, two admissions and to sepsis workups after symptoms began) and Gigi felt almost normal (but tired) in about an hour. They said if she remained without symptoms overnight, she could go home Saturday morning.

Here follows a tale painfully emblematic of modern medicine. Gigi was fine overnight after the steroid. I phoned her 7:45 the next morning and found the hospitalist was with her. He told her as I listened she would be discharged that morning. I had much to catch up on at home, so decided to allow a few hours for the discharge “paperwork” to be done and continue with my tasks. I got to the hospital about 10:45. The doctor ,again, happened to come by and said he was going to complete the discharge order the moment he left. Then, the wait began. Recall, I interrupted my many home tasks in order to pick Gigi up and bring her home. We waited. Now, while there, we learned that the patient’s entire medical record is online in real time. So, at 2:15 pm, I looked at it and saw that the discharge order - promised (the second time) at 10:45 - was written at 2:05 pm. We decided to wait a few more minutes and leave if nothing happened.

At 3 pm, 7 hours after we were promised discharge, we called Gigi’s nurse into the room and asked where were the promised prescription steroid medications - those to take at home - we had been told they would be delivered to our room from the pharmacy (with the cute title “meds to beds”). She said the order just went to the pharmacy a minute ago. From experience, I knew that would be another two hour wait. We then told her we were leaving and we did so, as soon as I found a wheelchair to take my exhausted wife to the car. As we rolled down the hall, the nurse said the prescriptions would be called to our regular pharmacy.

Here’s the kicker as to another aspect of modern medicine. Remember the steroid which ended a week of fear and agony? The drug she as given IV the prior afternoon has a half-life of 4 hours. I figured they would give her additional doses. Wrong! She got no more! None! So, despite all the continuous, attention-demanding data-entry rigmarole, name and DOB checking, endless scanning of wrist ID band, nobody bothered to prescribe more of the drug which solved a weeklong, possibly lethal problem! Predictably, by the time we got home at about 3:45 pm - before I could get to the pharmacy - Gigi had again developed a fever, chills and rash. Fortunately, I keep a supply of dexamethasone (a powerful steroid I keep on hand for emergency or for serious Covid,) and gave her a dose. The symptoms gone in 20 minutes.

Next came decisions about what to do next. Rather than operate on the (clear to me) assumption that Neulasta was the cause, it was decided to change two of the triple-infusion drugs administration. Carboplatin has the most serious potential allergic reactions in the form of anaphylaxis (if this was, indeed, an allergic reaction, it was a not an immediate-type anaphylaxis but rather a delayed-type hypersensitivity reaction). So, it was decided to do “desensitization” infusions, which take a full day, by itself. Other drugs had to be given another day and one of those had to be given over two days on a different schedule entirely.

As to the carboplatin, rather than a one hour infusion of drug, this “desentization” procedure, takes more than 6 hours, beginning with diluted drug of 1:1000 concentration, 1:100, 1:10, and finally the full dose. So, rather than a three drug infusion on one day, Gigi had to go in on four separate days AND, she could not have the carboplatin desensitization at the usual cancer center near us. We now had to go the one of the flagship hospitals in the city for that. From our perspective, this added much complexity and required us to recruit our children to help, as it was a 12-hour undertaking. I couldn’t do it all myself; we needed to divide up our attendance, so one of us was always with Gigi.

Oh, they did decide to not give any more Neulasta. Instead, they would check her white blood count (as they normally do) and give a different, shorter-acting drug only if a low white count demonstrated a need. In addition, another drug was changed - paclitaxel. She is now receiving an nanoparticle albumin-coated form of the drug, rather than the solvent form. This form cannot be given all at once either. So, it requires infusion on an intermittent schedule. One infusion per week for two weeks on, then one week off. So, from my perspective, in order to try to prevent what was most likely caused by Neulasta in the first place, multiple changes were made to make the undertaking much more burdensome on us. On the one hand, I’m glad they gave this so much thought and want to “play it safe”. On the other hand, in the overall situation where the best we can hope for is - hopefully - a few years of decent quality of life with eventual relapse(s), each additional burden and discomfort move Gigi in the direction of stopping treatment altogether.

We do what we can to limit the burdens. For example, a home health nurse now comes once a week to draw Gigi’s blood, rather than having to go to the clinic and be exposed to a room full of people while immunosuppressed. Other than for her treatments, Gigi stays home so as to not be exposed to respiratory infection. We both do regular handwashing. I run a room air HEPA filter in our family room, where Gigi spends the day. I intermittently treat various rooms with ozone - having bought a generator during Covid. I go out only for necessaries and wear an N-95 mask for all indoor activities.

Continued in Part II….


Stay strong, CW. And please don’t ignore your own health while devoting so much necessary effort to your wife’s.