This adapted excerpt comes from my forthcoming memoir.
I’ve been defying the odds since my terminal cancer diagnosis. Actually, since before the diagnosis.
In late January 2011, I had another sinus infection accompanied by some heart flutters. I went to my primary care physician in Williamsburg, Virginia, and as part of his protocol, he drew some blood. When the results of the blood test came back, he called me, recommending I follow up with a hematologist because my white blood cell count (WBC) was quite elevated at 38—the normal range is 4 to 10. Why was the blood draw protocol in place? Don’t know, but it probably saved my life.
Early the next month, I saw the local hematologist. He ran a similar blood test, receiving the results in his office within minutes. My WBC was still elevated, but not as high as it had been the previous week. Yet he wanted to run a more detailed blood analysis that would require sending the blood to an outside lab. What made him want to pursue the extra testing? Don’t know, but it probably saved my life.
After receiving my Philadelphia chromosome-positive Adult Lymphoblastic Leukemia (Ph+ALL) diagnosis over the phone on Thursday evening, February 10, the following afternoon my husband and I, with our twelve-month-old son, met with the hematologist to discuss treatment protocols. He was ruminating on two different chemotherapy regimens. Luckily, this hematologist collaborated, at our request, with a specialist at the University of Virginia. Why was he willing to be open to an outsider’s thinking? Don’t know, but it probably saved my life.
And that’s just the beginning of how I defied the odds.
The University of Virginia specialist recommended Hyper-CVAD protocol chemotherapy coupled with Gleevec, a specialized drug that kills detectable cancer cells. The local hematologist started me on the medicine. I began treatment at the only hospital within an hour of our house that our health insurance would authorize.
I had eight potential rounds of chemotherapy to get into remission. If my body did not respond, if I did not attain remission status by the end of those eight rounds, I would not be eligible for a marrow (bone, stem-cell, or cord-blood) transplant, and I would die. After two rounds, there were no signs of remission.
And there was another concern–even if I got into remission, the local Virginia hospital did not do marrow transplants. Before I ever entered the hospital for chemotherapy, my husband and I reached out to knowledgeable friends and family about where to go for treatment for a marrow transplant. We asked for a top-five list. Of the forty National Cancer Institute Designated Comprehensive Cancer Centers, one kept coming up again and again: City of Hope.
And so my husband worked the phones, trying to convince our health insurance company to transfer my care to City of Hope. In the meantime, he contacted the care team at City of Hope, requesting that it give guidance on my therapies to the local doctors. After the insurance company denied our local doctor’s second appeal request, my husband called the insurance company directly, asking the doctor in charge of appeals to discuss my case with Dr. Anthony Stein at City of Hope. The insurance company finally approved my transfer. Most doctors are too busy to take the time, but Dr. Stein did.
The Virginia doctor OKed me to fly to California once my WBC was high enough at the end of March. After a horrendously long trip, my husband and I made it to City of Hope, where they ran numerous tests on me, Dr. Stein took my medical history, and I was immediately admitted to the hospital for exhaustion due to my high WBC of 74. My husband made another round-trip flight to retrieve our fourteen-month-old son while I was in Helford Hospital on the City of Hope campus. In early April I found out I was in remission. By the way, the bone marrow biopsy (also called aspiration) indicating remission had been done April 1st–no foolin’.
Once I had regained some of my strength, Dr. Stein released me. I would be in the hospital for additional rounds of chemotherapy to try to maintain my remission status until the team found a donor. And Dr. Stein would readmit me during times when I was neutropenic (having a low WBC, which made me vulnerable to infection). But I also had many stints lasting days and sometimes weeks with my husband and son, quite a change from the six straight weeks stuck in the Virginia hospital. I treasured these times away from the hospital, which renewed my spirit.
With each round of chemotherapy, I edged closer to the eighth and final round that might stave off a relapse. City of Hope staffers continued to hunt for a donor match, expanding from the national registry to look internationally. By making it to a City of Hope, I had a better chance at defying the odds and becoming the best sort of outlier: a terminal cancer survivor.