At 73 years old, Fanny is a retired clinical social worker, avid tennis player, amateur photographer, wife, mother and grandmother. She’s also on her fourth cancer, with a history of chronic myelogenous leukemia (CML), breast cancer, invasive upper track urothelial cancer of the kidney, and is currently being treated for bladder cancer.
In 1994, after a first checkup with a new doctor, I got a call saying the lab must have messed up my blood tests, could I please come back to repeat them. I did so and a few days later he told me I needed to see a hematologist. My granulocytes, a type of white blood cells, were high. I called my ex-husband, a doctor, who said it could be leukemia and most likely CML, but we can’t make a diagnosis until you see the hematologist and have special tests. I had little idea of what leukemia was, much less CML! There was no internet back then, so my husband and I took out my ex’s- 20-year-old medical textbooks and looked up CML and freaked out. The books said CML was fatal!
One Chance for a Cure
A painful (but quick) bone marrow biopsy showed definitively that I had CML. Fortunately, lots had changed in 20 years! After consultations with several hematologists, we learned that allogenic bone marrow transplant (BMT), a risky procedure, was the only chance of a cure if I could find a donor that matched. Looking for a match in the general population, my chance would be about one in 20,000, but siblings have a one in four chance of being a match. Luckily, one of my two sisters, a fraternal twin with the same chance as my older sister, was a perfect match—relief, excitement and fear! Two months later, I was isolated in a seven by ten-foot space in the hospital with controlled air flow because they were about to trash my immune system. I had total body irradiation, twice a day, for 5 days and a high dose of chemotherapy. This was followed by the infusion of my sister’s potentially life-saving marrow. Thank you H.
I photographed the whole process and tried to think of it as an adventure—perhaps it was distraction, or denial. When I went into the hospital, I was youthful, energetic, athletic and weighed 107 pounds. When I came out six weeks later, I was bald, anxious and depressed. I thought I was going to die, cried a lot, couldn’t sleep, didn’t eat and was down to 86 pounds. Even Marinol pills didn’t help, so I gave them away to friends
Poster Child for Survival
There was an unreality to it all. I was asymptomatic and was seeing the doctor to find out what my cholesterol was. Then this overwhelming experience began. I left my job, since it was clear I wasn’t going to be able to work for a while, and it was my first exposure to not working. I missed having a job, a mission and a community of people to work with. It affected my identity—who am I? Am I just a cancer patient? I was afraid I’d die and would never see my daughter graduate college or would leave my wonderful second husband, whom I had married just 3 years before.
Finally and slowly, I got better. I became a poster child of survival. I was volunteering at an organization devoted to people with blood disorders, returned to work as a social worker with breast cancer patients, enjoying life and feeling very lucky.
Eight years later I returned to the BMT service and staff for what I thought of as a social visit. They did blood tests too and to everyone’s surprise, we learned I had relapsed. My immune system was then 50% my sister’s instead of the 100% it should have been! I was confused and angry that the transplant didn’t work. The thought that I might have to go through all that again was overwhelming, just horrible.
The FDA had recently approved a targeted medicine called Gleevec for patients with CML. Somewhat of a miracle drug! It put me in a good remission, with some side effects, but I was relatively fine again and feeling, once again, very lucky. Over a decade later, researchers realized that discontinuing Gleevec in certain populations may maintain remission and eventually be a cure! So, I’m off this treatment, possibly disease-free and following up with frequent blood tests and doctor visits. All is fine…
In 2016, a routine mammogram and subsequent needle biopsy showed that I had breast cancer, ductal carcinoma in situ. They scheduled me for a lumpectomy, but there was a tiny bit of doubt about the diagnosis, so I asked for an MRI to learn more. The breast surgeon and her nurse expressed some resistance because of the many false positives an MRI generates (who knew?), but having the MRI was a good move. Turns out it was invasive, meaning the cancer cells were not just in the milk ducts but were in the breast tissue of my left breast! Instead of lumpectomy I had a mastectomy with no reconstruction. Luckily, there was no invasion of my lymph nodes—a very good finding!
Knowing what I did about breast cancer, I never thought this was going to kill me, unlike the CML and BMT. I would die of something else—it was a quality of life interruption, not a death sentence. But, losing a breast was more difficult than I expected. I missed it. Even though my breasts had been small and for most of my life I never wore a bra. I found that wearing one with a prosthesis was uncomfortable and not me! But I stuck it out for a while until…. Six months later I experienced a third cancer that made my obsessing about bra or no bra seem trivial. I got used to being lopsided!
I had found blood in my urine. Multiple specialists investigated and wanted to do a biopsy of my kidney. They tried but failed, in part to avoid manipulating and spreading what they thought might be cancerous cells in my urine. The only way to get a definitive diagnosis was to remove my left kidney, and they wanted to do it right away.
The ultimate finding was upper tract urothelial cancer—the lining of my left kidney, and ureter and fat cells around it had tumors. This was an aggressive, high grade, invasive, transitional cell carcinoma (TCC) that they knew little about except that these cells migrate so there is a high risk of it returning and metastasizing. That’s scary. I thought the leukemia was complicated. Breast cancer in general can be even more complicated. But this cancer of the lining of my urinary system was not only complicated but felt the most ominous!! This could be the disease I could die from!
More Invasive Surgery
They did robotic and open surgery to remove my kidney, ureter and the fat around the kidney. There was trouble sewing me up because of radiation damage from the BMT. My fascia was very thin, so a plastic surgeon was called in to put mesh in to help seal things up. I was in the hospital for 4 days, then home, then back in for 3-4 days. I just wanted to know when I could get back to playing tennis. But the plastic surgeon said not so fast. You’re at high risk of another hernia, which could threaten the peritoneal mesh.
Luckily, I was eligible to join an immunotherapy clinical trial for Opdivo as adjuvant therapy. I started infusing every other week for a year. It was a double-blind clinical trial, so I don’t know if I actually got the medicine, but I was going every 3 months for MRIs, CAT scans and cystoscopies. When they found 3 tumors in my bladder, still high grade but slightly different from the cells they found before, I had another surgery to remove them and am now getting BCG treatment. It’s a type of immunotherapy, a tuberculous bacteria that produces an immune response, that they insert in your bladder to be held in for two hours!!! Not pleasant.
Because of this likely-to-return cancer in the bladder, I could no longer continue in the Opdivo trial. It felt like a great loss. The doctor leading that study continues to follow me with MRI’s etc. every three months, but I am no longer getting treatment.
The relentlessness and uncertainty of ongoing monitoring for all four cancers is hard. (I’ll be taking an aromatase inhibitor for the breast cancer for 8 more years.) I’m keeping busy—doctor’s appointments have taken over—but, mostly just trying to live and enjoy my life. I’m not sitting here thinking I’m going to die all the time. I’ve learned lots: certainly medically, emotionally and interpersonally. Thankfully, I have my husband to talk to—he is a great listener and source of support. It’s so helpful to say what I feel and what I fear. It doesn’t help to get depressed and anxious (not that I have total control over this or anything for that matter!) So, I’m taking an anti-depressant, which helps, and Atavan to sleep at night. Also, mental health professionals who specialize in oncology patients have been very helpful.
When I learned I had leukemia a friend gave me a gift of a reporter’s notebook, and I started taking notes about my health and emotions. Over the years I have filled 16 notebooks. It really comes down to being present now, not to deny the fears, but to live in the moment and better manage those feelings. And I do feel lucky. I get to spend time with my retired husband as well as with my daughter and grand kids in Boston. Mostly I sleep well at night, and physically I’m feeling better and better. But I’m tired and could stay in bed all morning, except I’d rather be up and active, with people.
What I keep coming back to is the randomness of it all. When I had the full-body irradiation, they told me I would be at greater risk for certain cancers in the future, like cataracts and skin cancer (both of which I’ve had). I didn’t expect what has followed. We never know. Are these other cancers related? There’s no family history of any cancer, so it’s a question. Always questions!