Post-COVID, the work begins. Not the journey--that's been underway for some time, now.
My official diagnosis is, "locally advanced metastatic malignant melanoma" of my right ear lobe. I was treated with a wide local excision at the end of November, 2022. The post-surgery pathology did not show any spread to the sentinal lymph nodes in my neck (which were removed with the excision) but did show residual malignant melanoma in the ear tissue after the surgery. I have not received an adequate explanation as to why I was not offered additional treatment after the surgery and incomplete removal of the melanoma in November. I have now been staged as "IIIB."
I had my first immunotherapy infusion yesterday. The immunology oncologist laid out the following plan. Two cycles of infusion with combined ipilimumab (Yervoy) and nivolumab (Opdivo) three weeks apart. One week after the second infusion, I am to have another PET scan to reevaluate and to determine the response to treatments, and if favorable based on scan results, a surgical resection followed by nivolumab every four weeks for one year. The doctor says the intent of this treatment is '"curative," which sounds good to me. They have also sent tissue samples to Caris for NGS (genetic) testing.
The infusion process seemed relatively benign, took about an hour and a half, but I was comfortable in a medical recliner throughout. They even brought me a sandwich for lunch. My son, Benjamin, accompanied me to the appointment with the immunologist and sat with me throughout the infusion, then drove me home. Glenda (and Dak, our small dog) stayed with Ben's family at his home throughout the day. The love and support I'm getting from family (and from friends, too) is overwhelming and humbling.
I'm 24 hours post-infusion now, and have no significant side effects noted. I slept very well overnight.
Tuesday, May 16, 2023
Will this be the EZ part?
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"You'll miss the mundane walk from the post office to the store to the house--the dog greeting you; the neighbors waving; the breeze on your face. You'll miss the slow woman who disrupted your pace. You won't know this until the walk is difficult or impossible. There is something to loving the mundane--Thornton Wilder, I believe, dealt with this, to great and roaring cynicism. Be awake and alive and present, because this is your own great and gilded age, and it's going to slip away with brutal swiftness. People pay small fortunes to see a whale for three seconds or an eagle fly ahead, but they race through their one and only life. I'm fairly positive that I'll regret my stupidity the most in my final moment of awareness." --Alec Guinness/Interview with James Grissom/Photo of Guinness as a young boy/ #FolliesOfGod
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