Failure, Persistence and Heroism
Rules of the Roadgames

Anal Cancer: A Real Pain in the Butt

I decided to use a subtitle with a bit of humor, as laughter will be increasingly important over the next few months.

On May 18, Amy had surgery to repair a rectocele, which also involved draining a fistula.  A routine biopsy revealed an unexpected and unwelcome result: carcinoma in situ, or "non-invasive" anal cancer.  We met with a radiology oncologist shortly thereafter to discuss treatment options, and since further surgery in that area carried unacceptable risks (due to proximity to the sphincter), we decided upon a 5-week course of chemotherapy with Fluorouracil (5FU) and radiation.  We scheduled a followup biopsy six weeks later, to allow time for the wounds from the initial surgery to heal. 

The followup biopsy of four sites surrounding the original excision on July 6 revealed one to be "probably invasive" and two to be "possibly invasive", raising our anxiety level and the scope of chemotherapy, which was expanded to include Mytomycin, which has greater main and side effects in treating anal cancer.  Despite the somewhat more advanced stage of the cancer, the planned treatment has a 90% cure rate, so our anxiety was/is tempered by optimism.  We already had plans for visiting and being visited by friends and family throughout late July and early August, and since we needed to wait for additional internal healing following biopsy, we decided to schedule the start of treatment for August 15 ... this past Monday.

Monday morning, we arrived at the hospital at 6:15 a.m. to prepare for the surgical implantation of a "port" in Amy's chest through which the chemotherapy drugs can be administered.  After surgery, for which she was sedated (rather than anesthetized), she was able to rest a while before heading to the chemotherapy area at 12:30 to receive her first injection of Mytomycin and to be outfitted with her 5FU infusion pump.   At 3:30, we proceeded to the radiation oncology area for her first dose of radiation.  We returned home around 4:30, by which point Amy was tired, and feeling some pain from the surgical incision, but otherwise doing remarkably well given the circumstances.

Since then, Amy has gone in every day for radiation treatment.  On Wednesday, she also received a refill for the infusion pump and had her wounds checked, and Friday she had the pump removed.  Wednesday, she also had an opportunity to meet with a nurse to discuss skin care.  As Amy is fair-skinned and burns easily, the side effects of both the chemotherapy and radiation therapy are likely to be more significant for her than they would be for a darker skinned patient.  We've also learned that the cumulative effects of the chemotherapy and radiation will be increasing over the course of treatment, may continue for several more weeks or months afterward, and it may well be a year (or more) before she returns to anything approaching "normal" ... and, indeed, that we will likely have to redefine "normal" as even under the best conditions, some changes may well be longer-lasting or even permanent.  I just hope one of those changes is complete eradication of the cancer!

We both continue to work through the stages of grief, often looping back as new information -- and subsequent thoughts and emotions -- come into play.  I say "we" liberally here: I think each of us is progressing and regressing at different rates at different times.  Amy is doing pretty well: still feeling some pain from the port implantation surgery, experiencing a little nausea, some dizziness and fatigue.  She is feeling well enough that we will go for a while to watch Evan play soccer in the Jamboree this afternoon.

With the start of Amy's treatment this week, I've scaled back on my business focus -- particularly difficult given the early stage of my new venture -- trying to make time for her, for the family and for myself and avoid the temptation to indulge the workaholic tendencies that have characterized periods of my past.  I hope to find and maintain the right balance as conditions in all of these dimensions continue to change ... and to maintain my underlying faith that somehow this will all work out for our greatest good ... and that we will rise to meet the challenges -- known and uknown -- that lie before us.

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