Family History

I’ve been meaning to write about this for a while, but I knew it would be a hard post to write. Today is a cool, rainy day…perfect for some quiet time and reflection.

I was also inspired to write this today because I found a box with mementos from 2011, the year of my first cancer diagnosis, the year my life changed in so many unplanned and unimaginable ways. I probably received more than 100 cards from family, friends and colleagues that year as I recovered from the onslaught of treatment for uterine leiomyosarcoma. I will never forget the sense of astonishment that so many people were thinking of me and would take time out of their days to buy a card and write beautiful, heartfelt notes to me. Sometimes those notes were very short (“Thinking of you”), sometimes quite long (“I had cancer, I know what it’s like, life sucks but you’ll get through it, etc.”). Some of them were matter of fact, some of them shared the fear of uncertainty, all of them sent love, prayers, and/or hugs. I got so many cards that I made a collage of them before going in for my big surgery (hysterectomy + temporary ileostomy) in October 2011. I knew I’d be in the hospital for a while to recover, and I wanted to be able to see that collage. I looked at it every day and kept it for several years.

I’m a packrat of the sentimental sort. I tend to hold on to cards, photos, and other mementos that are especially meaningful to me, or were at the time I received them. This means I have a variety of boxes containing these capsules of love and friendship. In short, within the context of this blog, this habit means I’ve held on to some of the cards and notes I received in the course of my journey to Cancerland (btw, see this great recent commentary about one woman’s brief journey to Cancerland). I’ve done my best to whittle this collection down to the mementos that affected me most deeply. Interestingly, the cards that made the cut came from a wide range of people in my life: some very close to me, others who were really acquaintances, but wrote something powerful.

Anyway, in my typical fashion, this is all a lead up to today’s post, which is about my family history of cancer. Within the box of 2011 cancer mementos, I found a card from my Great Aunt B. Aunt B. just died last fall at the age of 95, the last of her six siblings to slip the surly bonds of earth. IMG-8169

Aunt B. wrote,

“It will be a rough time for you these next many weeks. Your Aunt A. in early 1964 would travel Monday morning by bus from Beaver, Utah to Salt Lake City for her daily C. treatments, staying at a motel, then returning home to Beaver by bus after Friday’s treatment. I know you will make it fine (after all you have that [family] spirit in you) and we wish you well.”

The thought of getting cancer treatment in 1964 is horrifying. Cancer treatment in those days was generally limited to surgery and  radiation. According to a 2008 history of cancer chemotherapy, “surgery and radiotherapy dominated the field of cancer therapy into the 1960s until it became clear that cure rates after ever more radical local treatments had plateaued at about 33% due to the presence of heretofore-unappreciated micrometastases.” Although chemotherapy research originated in the early 1900s (!), the field was very limited until the U.S. National Cancer Institute was established in 1955, ultimately leading to (among other things) the development of the clinical trial system we know today. More on that in a minute.

Those of you interested in reading more about the history of cancer treatment can see an interesting timeline at the National Cancer Institute.

There also was a distinct lack of nuance in treatment at that time. Cancer generally wasn’t caught early, but even if it was, the prevailing wisdom was to cut out a large swath of tissue to confine the cancer. So an early stage breast cancer diagnosis, like the one I had in 2015, would have led to a radical mastectomy (the “radical” part references the removal of lymph nodes as well as breast tissue), not a lumpectomy, or “breast conserving surgery,” as lumpectomies are now called. Based on the stories I’ve heard from older breast cancer survivors, the “take it all” approached persisted for breast cancer diagnoses at least through the 1980s.

Radiation, too, was still very much an evolving tool in the 1960s. Researchers were still figuring out how patients would respond to different doses of radiation, and trying to figure out how to minimize the significant side effects of their approaches.

I don’t know any details about my Aunt A’s breast cancer or her treatment. Regardless, I’m quite sure breast cancer treatment was a hard row to hoe in 1964.

But still probably not as hard as my Aunt Georgii. I mentioned her in a previous post, when I remembered one of my favorite stories about her making her first cherry pie…out of maraschino cherries! Blech.

G’s cancer story deserves its own book (and, in part, she has one). She really went to hell and back. As much as I resist the “warrior” narrative that is pushed on cancer survivors, my Aunt G. was a fighter of the highest order.

G. was diagnosed with advanced stage 4 breast cancer in the 1980s at the age of 41. I don’t know the specific type of breast cancer, but it was incredibly aggressive. She started with the (then) typical steps for treatment: mastectomy, chemotherapy, radiation. She had multiple rounds of radiation, both external beam radiation (like I had, but probably much less focused) and brachytherapy, in which small radioactive “seeds” are actually implanted in the body for a period of time.

She also did chemotherapy. Fifteen rounds of chemotherapy, each of which was several months in duration. My mom, Aunt G’s sister, told me that G. got to the point where she could plan the timing of her reactions to the chemotherapy perfectly: after leaving treatment, her vomiting would stop for just long enough for her to get to a certain Burger King. She would pull over in their parking lot and vomit for about 15 minutes, then get back on the road to get home.

But none of these treatments worked, which led her to trying experimental treatments such as hyperthermia (application of extreme heat to kill cancer cells) and cryotherapy (application of extreme cold). Finally, in a last-ditch effort, she agreed to serve in a clinical trial for a treatment called high-dose chemotherapy and bone marrow transplant (HDC/BMT). Georgii was among the early trial groups for this risky and controversial treatment.

The idea behind HDC/BMT was well described by Siddhartha Mukherjee in his book, The Emperor of All Maladies:

“…a procedure known as autologous bone marrow transplant, or ABMT,…roared into national and international prominence in the mid-1980s. ABMT was based on an audacious conjecture. Ever since high-dose, multi drug regiments had succeeded in curing acute leukemia and Hodgkin’s disease in the 1960s, chemotherapists had wondered whether solid tumors, such as breast or lung cancer, had remained recalcitrant to chemotherapeutic obliteration simply because the bludgeon of drugs used was not powerful enough. What if, some fantasized, one could tip the human body even closer to the brink of death with even higher doses of cytotoxic drugs? Might it be dragged back from that near-lethal brink, leaving cancer behind? What if one could double, or even quadruple, the dosage of drugs?

The dose limit of a drug is set by its toxicity to normal cells. For most chemotherapy drugs, that dose limit rested principally on a single organ — the bone marrow, whose whirring cellular mill…was so exquisitely sensitive to most drugs that patients administered drugs to kill cancer were left with no normal blood-forming cells. For a while, then, it was the bone marrow’s sensitivity to [chemotherapy] drugs that had defined the outer horizon of chemotherapeutic dosage. The bone marrow represented the frontier of toxicity…”

In autologous bone marrow transplants, “the patient’s own marrow was harvested, frozen, and transplanted back into…her body. The principal purpose was not to replace diseased marrow…but to maximize chemotherapy dosage. A patient’s own marrow, containing blood-forming cells, was harvested and frozen. Then blisteringly high levels of drugs were administered to kill cancer. The frozen marrow was thawed and implanted. Since the frozen marrow cells were spared the brunt of chemotherapy, transplantation allowed doctors, theoretically at least, to push doses of chemo to their ultimate end.”

As you might imagine, this process wreaked havoc on the patients. It wreaked havoc on my Aunt G. She was in strict isolation for 9 weeks then stepped down gradually.  At the HDC/BMT treatment mid-point she asked to go home but she couldn’t, because she would have died quickly out of the unit.  She literally had zero immune system.

Ultimately, after some ten years of trials, researchers confirmed that outcomes were no better with HDC/BMT than with conventional approaches to chemotherapy. And unlike the conventional approaches, the treatment itself was more likely to kill you. Treatment-related mortality from HDC/BMT was 3-15%.

I was in high school when Aunt G. was going through this process, and while I knew she had breast cancer and knew she was getting treatment at Duke, I had no appreciation or understanding of what was really happening. Last year, when we found out about my liver metastases, my mom told me this story in detail. Mom said that G’s suffering was indescribable during the last 8.5 months of her life.  In spite of that, G. said she would have done it again because…who knows? Maybe she could have been one of the (few) people this horrific treatment helped.

We stand on the shoulders of giants in so many ways in this world. When you find yourself consumed by a life-threatening disease, or even a chronic illness, it is easy to fall into the habit of identifying the medical professionals as the giants. It’s important to remember that there are countless patients who literally gave their lives to medical science to get us to where we are today. My Aunt Georgii was one of them, and I could not be more proud or more grateful.

Aunt Georgii

Family History