The week in Amy’s cancer counterinsurgency started out "normally" (in sharp contrast to events unfolding in the southeast US in the wake of Hurricane Katrina), with Amy heading in for her daily dose of radiotherapy on Monday. On Tuesday, however, her complete blood count (CBC) test revealed a platelet (PLT) count of 39 (thousand per microliter — normal range is 140-400). Since radiotherapy compounds the effect of chemotherapy on bone marrow, her radiation oncologist suspended radiotherapy until that count increased. Wednesday was another radiotherapy vacation day (and the first weekday she’s not visited the hospital since the start of treatment). Thursday, her PLT count had stabilized (up to 49), but her white blood cell (WBC) count was down to 1.5 (thousand per microliter — normal range is 2.5-11.0), so she received another injection of Neupogen, and the radiotherapy cease fire continued. On Friday, her WBC had spiked up to 13.4 (above the normal range), and her PLT count was holding steady at 49, but her doctor wanted to further postpone radiation until Tuesday (given the Labor Day holiday on Monday), when they can retest and determine with greater confidence whether the counts have stabilized.
Last week, we found out that some kind of break in the action is expected at some point in the treatment, so I guess the hiatus has simply come sooner than expected (although we were anticipating this break coming later in the treatment, and as the result of tissue damage from the radiotherapy rather than low blood counts). We hope that her tissue is recovering sufficiently during this period that when treatment resumes it can continue through the end without a further break. The most difficult part of this week has been the waiting … Amy [understandably] just wants to be done with this as soon as possible. Her body has been responding to the elevated WBC with flu-like symptoms, and she has also been experiencing headaches and dizziness … symptoms she has coped with before as part of her longer-term — and lower-intensity — battle with multiple sclerosis (and the side effects of an earlier drug treatment for MS management).
Other symptoms persist from last week — gas, diarrhea, fluctuating appetite, fatigue — and some new symptoms are appearing or increasing — itching and pain in the affected area, hair thinning (in all areas) — but she is hanging tough. She has been driving herself to the hospital for treatment every day, felt well enough to do some school supply shopping, and continues to manage the household (although with the increased delegation of tasks, the house is not nearly as clean and neat as it is when she has more energy). We are both grateful for the ongoing assistance provided by our friends.
I’ve been increasingly attuned to the disaster and response(s) stemming from Hurricane Katrina, feeling compassion and empathy for those who are facing extreme challenges in the southeastern US this week. One important dimension in helping people (refugees) who have evacuated the impacted areas is enrolling the children of those dislocated by the destruction in [newly] local schools, not only for the obvious benefits of continuing education, but for the second-order benefit of helping families regain — or redefine — a sense of normalcy. Meg and Evan both started school again this week, and I have to say that I can understand the value of — and am grateful for — this second order effect.
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2 responses to “A Radiotherapy Cease Fire”
I, too, have been diagnosed with anal cancer and began my radiation on July 11th & chemo on July 15th. My chemo is one dose of mitomycin and two 4-day pump infusion cycles of 5-FU each 28 days apart. I begin my second cycle on this Monday. I recently had a 3 1/2 day stay in the hospital for a low white count (1.5), cystitis, a urinary tract infection and a temp of 101.3. My severe reaction also came earlier than they thought it would. My platelets (40) and red blood count were also low, but not at a dangerous level. I had such severe burning when I urinated, it was unbelievable. The whole area was raw and bleeding from the radiation, which I understand the bleeding is not a usual symptom. Oozing is, but not bleeding. I finally got an aneseptic spray and some great gel called Nu-Gel that burned terribly when applied, but healed the area very well and quickly too. Of course my white count went up due to a shot of Neulasta, which I’m sure helped in the healing of my poor sore bottom. While in the hospital I was also visited by the hair loss fairy and am now sporting a very thin short hairstyle. I don’t know if I’ll lose it all or not. I too used to get severe abdominal cramping. That has since passed. Although I hope I don’t get it again when I get the 5-FU on MOnday. My nodule was a T1 – only a centimeter in size, but there was an edge which was invasive so I had to get the chemo & radiation. Oh, I did have to take a 3 day vacation from the radiation while in the hospital. Then they add it to the end. I know what we have is fairly rare. I hope things go well for you. I can’t wait til this is all over with. I took a medical leave of absence from work, so I can concentrate on getting well. I felt great today. Actually went food shopping and made dinner. A BIG day! Write back, let me know how things are going.
Barb: thanks for sharing your experience, strength and hope! Amy has also experienced bleeding –she initially thought it was due to menstruation (although it was a strange time in the cycle for this to start), but then realized it due to the rawness and sloughing off of tissue in the radiated region. She has been using corn starch to sooth the skin irritation and itching in that area. We’re glad to read you are taking the time to focus on getting well, and not letting the cancer — or its treatment — keep you down! I’ll be posting another update from our end shortly.