Bad Luck, Twice

I remember how shocked I was two years ago when I learned that I had breast cancer. We had consulted one of my former residency professors, a general surgeon whom I knew to be especially kind and thoughtful with patients and their families, to do the needle biopsy of a hard lump near my right breastbone area (breast tissue goes from your collarbone down to your actual breast and under your armpit; my lump was actually pretty high on the chestwall in what we call the tail area of the breast). After several days, we had a follow up appointment in his office to go over the results. I had barely touched the seat before he said that I had breast cancer. No matter how much you are prepared to hear those words (and I was prepared because my lump was hard and fixed against the chest wall, both bad characteristics for breast lumps), they come as a shock. The world spins a little, and in an instant, everything you thought you knew about the world & your future is different. I think I remained in shock for several days as I continued to go to work and focus on other things. But then I had one weekend of sadness, tears, and "what if" questions - dealing with a future that didn't seem so certain and planned out anymore.

We struggled with whether to do just surgery & radiation or chemo too as the specialist was recommending. (If you think doctors are any better at deciding what treatment course to take, you are wrong. We read the medical literature and second guess ourselves as well as our doctors). We struggled with where I should get treatment-in the Asheville area where I was living at the time or in the Durham area where my partner lived. In the end, we decided to do the surgery, a lumpectomy and lymph node biopsy, in Asheville followed by chemo at Duke and daily radiation treatments (for 7 weeks) in Asheville. Work was incredibly flexible with my schedule and everyone, I mean everyone, was extremely supportive. I got flowers, gift baskets, cards, hand knitted scarves, hats, and a personalized quilt that many folks sewed together to keep me comfortable during chemo. Ultimately I had 6 chemo treatments, every other Friday. I was pretty nauseated after each treatment, but we got through it. As the chemo left my bloodstream every other week, I felt better and better. Once I could drive, I'd slap on a scopolamine patch, to get rid of any remaining motion sickness, and drive back to Asheville to work until the next treatment. Friends and co-workers got used to the schedule and would stop me in the hall to ask which week it was-a treatment week or a non-treatment week. Even my patients took to looking after me, offering to mow my grass or cook me a tasty meal. 

I was so happy to be working during the "off " weeks, and I got closer to many of my friends, co-workers and family members. I was very fortunate to have so many great people in my life and thrilled to be able to do something for other people, too, on the days I was allowed to work in the clinic. Seeing patients during my treatment allowed me to keep some semblance of normalcy during a difficult time. Running, too, helped in that regard. When you have been as active as I have, it really feels good to get outside and run or walk. Even when I felt tired or fatigued, it was great to push myself to exercise just as I'd been doing since age 16.

I found a poem at one of the UNC breast cancer sites that described cancer in a very interesting way. The gist of it was that in the beginning, cancer fills your whole life. It's there in every room of your house-your kitchen, your living room, your bedroom. But eventually as you move through treatment and follow-ups, the cancer, and its importance, shrinks in your life. In the poem, the author says that eventually it occupies only a shoebox. I thought that was a good metaphor for the cancer journey. Cancer goes from being something you negotiate in front of you, to something you spy through the rearview mirror. And with time, the cancer gets smaller and smaller, as you leave it behind you and move away from the day you were diagnosed.

Until you have bad luck again like I did. On some routine blood work a few weeks ago, my neutrophil count was very low (900 instead of 1800-7800).  Several tests later it had dropped to 200. Neutrophils are the kind of white blood cells that help us fight infection, especially bacterial infections like pneumonia. I saw a hematologist who ordered more lab tests including a bone marrow biopsy. A long, fairly thick needle was inserted into my sacrum or buttbone to collect fluid from the marrow as well a piece of bone to analyze under the microscope. A few days later, we went to see the hematologist to find out my test results. I had a large number of atypical white blood cells, in my case leukemia cells, as well as lower numbers of red blood cells and platelets than I should have. It's rare, but it turns out that 1 in 100 people who have chemo and radiation will develop a second malignancy, often a blood disorder like mine (AML or adult myelogenous leukemia). Fabulous luck, a second time. I think the odds for women developing breast cancer are somewhere between 1 in 8 to 1 in 13. And the odds of getting a second malignancy are 1 in 100; so I am really special, as they say. I think of it as getting hit twice with lightening.

So in the past few weeks, that big bad cancer that had been confined to a shoebox was let out again (just like the Dementors from Harry Potter) into the living room, the kitchen and the bedroom. But we will get through with it, and eventually, cancer will be something we check in the rearview mirror again.

The schedule for the next few days will be jam packed. Tomorrow (6/12) I'll have another catheter placed in the upper part of my chest to access the big vessels near my heart that will accept my chemo, blood transfusions and other medicines. Then Friday (6/13), I'll report to the hospital to be admitted and start 7 days of continuous chemo. Meanwhile my sisters will be tested to determine if they can be donors for my bone marrow transplant. Hopefully the chemo I get starting Friday will kill all of the leukemia in my bone marrow, and I'll be in remission. I'll need another bone marrow biopsy on day 15 to check that. If it looks good and one of my sisters can be a donor, I'll go on to the bone marrow transplant. That involves a month in the hospital since they will kill all of my bone marrow, infuse that of my donor, and wait for it to make white cells, red cells and platelets for me. I'm not too worried about all of the "what if's" this time because I have to get through this first part with 7 days of chemo first. One day at a time, one week at a time, ...I'm just happy to be here feeling good, feeling strong and hopeful and blessed with everyone's help.

Word of the day: resilience...makes me think of all the ways we adapt to hardship or suffering to emerge vibrant on the other side

Listening to Alison Kraus& Robert Plant