As Fran’s care partner through three major systemic cancers, one totally unanticipated relapse and many skin-cancer excisions, with love, luck and perseverance, Irwin has found ways to cope with the uncertainty of her disease, living with cancer as “an uninvited house guest” impossible to evict, and the dread of loss, for more than three decades.
Fran and I first met when she was a student at Hunter College School of Social Work where I then taught. At the time, we were both married to other people. But I noticed her immediately and thought to myself “this is somebody who knows how to have fun.” She was sitting on the floor talking to other new students and she was so engaged with everyone around her. I just noticed her, never thinking that we would share a long life of absolute joys and major health challenges together.
Years later, we were both divorced, and I was working as a research consultant at Mount Sinai Hospital in New York where she was a social worker. I happened to see her walking determinedly down the street in a rainstorm—a green army-surplus trench coat and red L.L. Bean fedora with its brim blown back like a pony express rider. I couldn’t help but be intrigued. So, I contrived to offer my research consultation services to a project that she and a group of colleagues were working on. Nothing publishable came of the work, but we had the best wedding ever. I moved into the apartment she shared with her teenaged daughter, Molly, where we encountered all the minor but none of the major conflicts that blended families face. (My own children, Dan and Becs, were already launched by then and living elsewhere.
Two years later, Molly went off to college and Fran and I were looking forward to finally enjoying life alone together. That fall, via a routine physical required by a Long Term Care Insurance application, Fran was diagnosed with chronic myelogenous leukemia (CML). She was totally asymptomatic, but it was a scary diagnosis. You can imagine the shock to Fran and me, and to our kids. Since then, we have been living with a succession of life-threatening cancers—one return engagement and two new ones—showing up like uninvited guests. When our children and later grandchildren visited, our unwanted guests were relegated to the attic, but they still clunked noisily around the house, despite our best efforts to ignore them. Over these decades, with terrific care at and some incredible luck, we somehow managed. Was there an alternative?
Still, critical moments stand out for me. Like when the hematologist who first diagnosed her leukemia said “Yes, it’s CML but it’s a ‘no brainer’ if you can find a match and have a bone marrow transplant (BMT).” Fran’s reactions were always more accepting, but for me, it seemed like such a flip and cavalier statement for such shattering and complex news. Maybe it was a “no brainer” for the doctor, who delivered the news promptly without a side order of empathy. But for us, the problems, fear, confusion, and Fran’s suffering had just begun. Could we find a transplant donor? Where should Fran have the BMT? What are the chances of success and quality survival? What would the process be like? Should Molly withdraw from college weeks after she began? All overwhelming questions. But when you are presented with such devastating news, you have no choice but to process it and move on.
The luck started with the fact that Fran’s fraternal twin sister was a perfect match for the BMT and wanted to help in any way she could. We were able to move forward quickly. Some suggested doing it at Sloan Kettering where they have such a great reputation. Others suggested Seattle where they did the most transplants. But when we spoke to the transplant specialist at Sinai, Fran, who always asks such brilliant and direct questions, asked him, “What would you do if it were your wife?” He said, “Transplants are ‘cookbook’, but I’d want her to be as close as possible to relatives and friends.” And he added, “You and your husband will need all the support you can get through what will be the worst year of your lives.”
He was right on both scores—it was really good advice. We agreed that Molly should continue with her schooling though I’m sure worry took its toll. By chance, her Christmas break and my daughter’s well-timed visit, aligned with Fran’s transplant, and we both cherished their support.
As Good As It Gets
The transplant itself was technically easy but physically and psychologically torturous for Fran—living totally isolated in a Laminar Airflow Room for six weeks after having full-body radiation and toxic chemotherapy to destroy her immune system, and then waiting for her sister’s donated immune system to kick into gear. But because we were at Sinai where there were social work colleagues who knew and loved her, we both were cared for by wonderful friends as well as by the wonderful transplant team. Fran had a couple of friends who opened a dedicated phone-mail system so that callers could learn about her progress and blood counts without calling and asking me. Mount Sinai friends would visit at various points in their workday. As awful as things were, it was as good as it could get. We were lucky that so many there loved her.
Nonetheless, she might have died a couple of times during this process, including after she had been discharged, when she developed a life-threatening infection and required rehospitalization. It was just awful for her and a nightmare for me to witness. I was afraid I was going to lose her. Thankfully she recovered, and over time, we started a life together again. Fran’s remarkable will to live and love for life were so powerful.
Never Say Never
After five years, based on established statistical criteria, her transplant doctor said, “You’re cured, and you’ll never have to think about this again.” Though well-intentioned, it was an unfortunate prediction. Three years later, Fran relapsed. Fortunately, oncologists eschew the word “cure” these days. When it comes to cancer, there is no such thing as never again.
But again, we were lucky. By then, they had discovered a targeted drug, Gleevec, invented for another purpose, was very effective with CML. Another “no brainer”? At least it wouldn’t necessitate another BMT. It took about a year for Fran to get used to this daily oral chemo and its significant side effects, but Fran quickly went into a good remission and stayed on Gleevec for 11 years.
Persistence and Luck
Subsequent research studies and individual genomic testing supported her stopping with a good chance of remaining in a good remission—never cured but at least under control. She’s had regular blood testing ever since, and once the dread Philadelphia Chromosome (the mutational market of CML) was no longer detectable, we breather a sign of relieve and got back to living—like cancer had moved out.
Although painful and discouraging, everything went well. Another lucky story? Maybe, but also a consequence of good medical care, vigilance and self-advocacy, and Fran’s remarkable resilience. And we were lucky throughout all this that our medical insurance covered some incredibly expensive meds and procedures. And though our savings are modest, we have the financial means to cover the co-pays. Many can’t.
I like to think of Fran, who as a child was a competitive diver, now as a surfer, riding the waves of medical progress and switching waves when another comes along while she keeps joyfully riding. “Lucky is the word that comes to my mind, but also Fran’s incredible life force, which persists to this day. I hate it when someone says that cancer is a “blessing.” It’s not a blessing. But we have been blessed with excellent medical care, with luck, good fortune and the ability to ride the waves.
Another Unwelcome Guest
Six months after her mastectomy, Fran noticed signs of blood in her urine. Seeing a urologist and other specialists led to a series of tests, procedures and findings—a mass in her left kidney, and aggressive cancer cells in her ureter that appeared to come from the bladder. Not just the return of cancer, but this time a more intrusive disease— aggressive and invasive Upper Track Urothelial Cancer which originated in the bladder. Her team recommended immediate surgery to remove the kidney and surrounding tissue. Crushing news!
Once again there’s an ogre in the attic. These last 5 years have involved a range of interventions before and after the cancer spread. We’ve benefitted from recent years of discovering new approaches and treatments for her metastatic cancer focused on specific mutations, proteins, etc. I’m a researcher, but I can’t keep count of all the “hopeful” new clinical trials she’s (we’ve) enrolled in, the “minor” surgeries, immunotherapy, on and “off-label” meds she’s taken with a variety of tolerable to intolerable side-effects, trying to keep the metastasis at bay, some astoundingly expensive and only fractionally covered. Ironically the most expensive did the least and cause the most suffering. Who said, you get what you pay for?
Now, instead of riding from wave to wave, we live from scan to scan. It used to be every six months. Now, it’s every two. Recently, her cancer spread to the abdominal wall, lymph nodes, pelvis, lungs, and liver. Now it’s “late-stage” metastatic urothelial cancer—ruthless and rude and trying to take over our lives together.
Throughout these difficult years, Fran has been the most resourceful and resilient person imaginable. She makes use of every medical and non-medical resource available. I don’t know whether she’s ever asked, “Why me?” I’ve never heard it.
And she’s such an active and attentive patient she remains so on top of everything she needs to do and take and deal with. Some people say she’s a “battler” but to me she simply loves living. I think she was born that way. We have a picture of her at two, happily pounding on the piano that to me proves it. And I knew it from the first moment I saw her. So, while I hate living with cancer, I figure I’ve got nothing to complain about—it’s just part of a wonderful life of travel and friends and children and grandchildren and good work as a social worker and a social work researcher we have shared together.
My Nurturing Nature
I think I have always been good at being a nurturer. When I was 14, my mother had severe post-partum depression at age 40, and I was heavily tasked in raising my newborn sister. I learned to love caring for her as a baby and a young child. Later, I was a single parent for many years with primary responsibility for raising my two kids alone. I cared for my mother when she was dealing with multiple cancers and my second wife developed an auto-immune disease a few months after we married. Before she asked for a divorce, she required lots of special attention. So, while I haven’t sought it, I’ve had several opportunities to learn how to care for others. And in truth, I enjoy being a nurturer. It’s just what I do. I’ve loved my professional career and mentoring students, and at the same time, I love doing domestic tasks like shopping and cooking. Call me a “wuss” if you like, I like the “wuss” I am.
There have been many very, very stressful times over the course of our life together, including my own painful bout with prostate cancer, and Fran’s week-long hospitalization for dysentery two days after we arrived in Mexico—certainly no time-share dream vacation. But I have never felt like I was giving anything up in order to care for Fran. There have been many times when I thought I might need to put my work or other aspects of my life on hold because of being worried about Fran and her needs, but she has always encouraged me to do “my” things, to keep myself engaged with work and with friends.
Doing My Thing
For example, just this past Fall, I was asked to give an opening plenary at a conference in Beijing—via Zoom due to the pandemic. I was a little concerned that returning to my career interests would either preoccupy me mentally or take me away from actual time spent with Fran when she so needed my support. But as always, she encouraged me to do it, so I did. Instead of me feeling guilty or her resentful, it enhanced my happiness, and my emotional availability to Fran. And now at 85, it’s led to new and meaningful friendships for me and publication possibilities that have enriched my life enormously—not because I need publications, but because I love writing and thinking. Not for nothing, the theme of my writing is “friendship”.
I have lots of people to talk to, which helps enormously. And I have learned to be mindful about who I can get what from, so I don’t ask the wrong people for things that won’t be forthcoming. I have a therapist that I talk to who’s a specialist in “excessive” grief—not because of Fran’s cancer, but because I lost a very dear friend to head and neck cancer whose wife, I thought, treated him badly at the end and never gave him a chance to express his deeper feelings, or me a chance to tell him I loved him. It took me years to accept that loss and get past my anger.
Support for the Supporter
So, when another old colleague but new friend was alone in hospice dying of pancreatic cancer, I went to visit him every week until he died. It would be crass to call it a “corrective experience”, and he and I talked about that possibility from our second visit together. It was such a mutually loving and honest experience, that I know we both got so much from. There I learned a lot about pure grieving.
My oldest friend, Jerry, and I speak once a week—we know each other for 65 years. He’s a clinical psychologist and very unlike me in some ways. But, he lost his wife to cancer very early in their marriage, so we can share a lot in conversation. And because we’ve been friends since high school, you wouldn’t believe the variety of things we talk to each-other about. We can tell each other anything and mostly we laugh about ourselves and each other. But sometimes we cry.
I have weekly telephone talks as well with my kids. My children are my greatest achievements and thank goodness they have a sense of humor. They love Fran and Fran loves them. And Molly is very good to Fran and for that I am grateful as well. I’ve made other new friends recently through Fran, like you, who know and share what we’re going through. Some people have sloughed off my e-mail list and that’s been hurtful. I can be pretty intense. But I’m strategic about how I ask my friends to support me. And, like I said, I’m lucky to have them.
A Most Ingenious Paradox
I don’t like to say that I am a “caregiver”—I find the word is infantilizing and patronizing. Supporter or partner or helper is better, but it’s not exactly right either, especially with someone like Fran who helps herself in whatever way she can. She is so independent and competent in managing her illnesses.
A Hong Kong research student I once mentored did a study of “good death” in a cancer unit. He wanted to know what it takes for patients to die with a feeling of peace and acceptance and discovered what he called the “support paradox.” What he found was that dying patients felt happiest and experienced less physical and emotional pain when they could do things to help their families, like passing on a recipe or career advice—things that enabled the patient to remain a valuable contributor to familial relationships until the very end. He claimed this was uniquely Chinese, but I argued otherwise. It taught me not to object to my mother stealing oranges for Fran and me from the dining room of her assisted living facility in her final years. Instead, I told her how superior they were to anything we could get at Whole Foods.
So Much Joy
This “paradox” is something I think about a lot with Fran. She sometimes offers to do things for me that I could do for myself, and I try not to resist. I am teaching myself to appreciate her intention and to let her know that. It’s a little tricky because our relationship is based in many ways on her independence and autonomy and my nurturance.
I may do the cooking, but there are other things that she gives me that take care of me in ways that may not be routinely seen as care. Say she goes for a walk with a friend—even a short one because that’s all she can handle—and comes back energized and happy—that gives me so much joy. One might say well that’s not doing anything for me, but it is. And I seek out my own opportunities as a way of keeping that balance. But it’s not in ways that would be immediately apparent to people who don’t know us both.
We’ve learned so much from Fran’s cancers. I still cringe however when well-meaning people call it a “journey”. To me a journey is something you plan for and look forward to in the future. We would have been crazy to plan our lives the way it has gone. And it’s not as though learning from one experience has prepared us for anything that came later. It’s all retrospective—so now we know about this cancer or treatment or medication. But I don’t feel like we’re any better equipped to deal with what’s next.
Some of the hardest times over the years have been dealing with uncertainty. Like when Fran was first diagnosed with CML and we didn’t know how quickly bad things could progress to the more dangerous phase of the disease, and when we didn’t know if she had a BMT match. But now, 27 years later, it’s not clear what the next option will be if the current treatment fails to keep the metastatic tumors from growing and new ones from appearing. And yes, there have been times when doctors or friends or relatives have unknowingly been insensitive or said or asked us things that made it even harder. But the hardest thing for me has always been when Fran has really been suffering and I’ve felt powerless to do anything for her. In that way we’re like everyone else.
Irwin, in an attempt to keep his head afloat while keeping his eyes on Fran recently wrote and published a book, Men as Friends: from Cicero to Svevo to Cataldo (Koehler Books). It’s about the importance of male friendship throughout his life and career as a single father, an academic researcher and now above all, a care partner.
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