Kate's Story: From Caregiver to Cared-For
Kate Rosenblum, PhD is a member of the Breastcancer.org Virtual Meetups. She lives in Ann Arbor, Michigan, USA, with her wife, their children, two dogs, and two cats.
“But it would be unlikely, too against-the-odds, for me to have breast cancer, too, right?” I
remember asking the radiologist who had just told me that the result of the multiple trips back and forth from the waiting room to the ultrasound and the mammogram machine was their significant “concern for” cancer. But even then, I knew it was cancer. I told my partner so just as soon as I left the office. So many repeat images, the expressions of concern, the fact that they sent a radiology tech in with me so she could offer emotional support as I met with the doctor.
Part One
I remember when my wife, Maria, was diagnosed. It was 2012 and she was 49 years old and
found the small hard-like-a-rock lump herself. I pushed her to get it seen, but it wasn’t until a
friend of hers, a family medicine doc, also urged her to go in for a mammogram that she acted.
Radiology confirmed that it was concerning, and she had a biopsy that week. We assumed it
was nothing, after all, I’d had multiple biopsies given my “dense breasts,” and they were always benign. Nonetheless, I was glad she was getting confirmation.
The diagnosis, of course, arrived on a Friday evening (why is it always Friday evenings?). The
months that followed were intense. She was luckily seen quickly, on a Monday one week after
the biopsy, where I learned for the first time about the “Tumor Board.” I had spent the entire
weekend agonizingly searching the web for information. I knew just a little, but enough to emit a small expletive when the oncologist, on Monday, shared that it was "triple negative." She didn’t know what that was. Her strategy, from that point forward, was to know only enough to know what to do, to trust her team, and to move forward with strength.
Maria was a lifelong athlete with tremendous grit and determination, and while she was scared she did not perseverate. Did not (unlike me) spend restless nights scanning the internet and medical journals, but rather trusted her doctors and strove to face the illness with as much hope and fight as possible.
I became a “caregiver.” Previously that term had been reserved for my efforts in raising our two young children, one 5, the other 10. But now I cared for all.
I sat with the family and shared that “mama was sick.” (“What kind of sick?” our perceptive youngest child asked, immediately sensing this was no run-of-the-mill cold, while the oldest immediately went to her mama for a hug).
I organized a “hair shaving party” for my wife at her stylist’s salon, inviting friends to
come with a special stone and a wish; we wore silly wigs and celebrated her spirit and strength, and cried when our two children shared their special stones and their love and wishes for their mother’s health. I tended to the worries of children, friends, and colleagues, and helped my partner think through decisions (what did the research say about whether she should sign up for the clinical trial to add Taxol to the treatment plan?). I called my friend’s parent, an oncologist in NYC, to be sure that the plan was right, and to glean any hope that I might about her prognosis.
The news was at first bad (cancer, triple-negative), but then a bit better (early stage, only a
centimeter in size, and clear margins following a lumpectomy). I tried to hold it all together.
I also struggled with my own feelings. I was terrified she might die, spent hours sobbing on the phone to my friends and sisters from the parking lot outside my office, before returning home to her. I wanted to support her, but found it hard at times as the steroids kicked in and she was more moody and irritable. I tried to imagine what she was going through, to help her not feel alone on this journey, and yet I also felt a bit at a distance. I didn’t admit it to others, but sometimes I felt “left out,” when we were at the doctors office and they only talked to her, or when all conversations with colleagues at work focused on how she was doing. Maybe I even felt a bit of envy about the fact that she was on medical leave, and I — since we worked closely together in managing a research team — was picking up more duties and responsibilities, keenly missing her presence in the workspace as well. I didn’t know how she was physically feeling, couldn’t imagine what chemotherapy was like, nor radiation, and felt guilty when I was frustrated with the emotional demands on me. I, after all, was the lucky one. Not sick. Years out, I now can see what an impossible task it was for both of us — one we could not get "right" but just had to get "through." She was scared of dying, and I knew that was a bigger fear than being scared my partner would die. Or was it? How would I go on living without her?
Being a caregiver meant feelings of helplessness, exhaustion, and overwhelm, but an expectation that you keep going, support, and manage the feelings of the others. I was not always certain if my own feelings were "okay" or where my feelings fit. Even now as I write this I feel somewhat ashamed for this mix of feelings that I had, for the truth of the fact of how I felt.
Part Two
And then 9 years, 11½ months later, here I was, 52 years old and in the radiology room, hearing that I might have cancer. Despite my quick calculation that this was “against the odds,” it was cancer, and it was also triple-negative. I quickly learned, as cancer patients always do, that odds are useless if you are the 1 in a 100. All odds boil down to "yes" or "no" — only 2 options.
In contrast to my partner, the cancer had spread to my lymph nodes, and the oncologist shared that it was stage IIIb. Protocols, it turned out, had changed in those intervening years. We would now start with chemotherapy, as neoadjuvant care had become the norm. The chemo would include the AC Maria had received, but would also include carboplatin and taxol. (I guessed the trial I’d studied a decade earlier had found positive effects for this add-on, after all). And thanks to a just-completed newer trial, I would also receive immunotherapy.
After surgery, radiation, and then more chemo, and more immunotherapy. An 18-month course stretched before me. Or should I say us? Immediately we were thrust into a different reality — the one where I was the patient, the cared-for; and my wife, the healthy one, now the now-caregiver.
Of course, this experience has been quite the teacher; repeated moments of, “Oh, I had no idea what she was going through,” and new-found empathy both for my wife, and for myself. Both of our experiences suddenly were so much more understandable. I knew she felt helpless and scared. And she knew I was terrified. Our children were older, but truly no less impacted. Maybe even more scared as they understood more of what this meant. She picked up my duties at work, and I was on leave for a longer time. My course was a bit rockier, with hospitalization for a pulmonary embolism, and neutropenic sepsis. I chose a bilateral mastectomy. After the first round of chemo some residual cancer remained, so an added chemo, capecitabine.
But after almost two years of treatment, and following an extensive surgical DIEP reconstruction, I’m cancer free and, to be honest, just now beginning to heal.
Part Three
During cancer, all either of us could do was focus on survival. It took everything I had to
survive, just as I know it had taken all of her strength, too. We both had to lean, heavily, on
others for all of the rest — caring for the children, the house, our income, practical and emotional support. As a caregiver, my wife had to navigate her own existential fear, the worry of being a widow, a single parent, of losing me, all while cheering me on and trying to understand what I was feeling and what I needed. Just as I had experienced years before, Maria probably did not feel that her needs were front and center, but rather, that she was the giver, feeling instead the range of unacknowledged worry and helplessness that often comes with that experience.
The lessons learned are many, and we both emerged from these experiences with a greater humility and deeper empathy. The journey of both carer and cared-for is so unique, so profound, and until you have walked it yourself, so uncharted. We navigate as we go, hand-in-hand, with compassion and a newfound strength, not only in ourselves, but in our relationship. We are both survivors.
