Last week I did some work on the fence surrounding our pool. Several months ago a large tree had fallen and taken out a section of fence, and I finally got around to fixing it. Unfortunately, I did not notice the poison ivy that was clustered around one of the posts. I managed to get urushiol all over my lower legs and forearms. For the past week my skin has been growing some remarkable rashes and blisters. I’ve been applying a topical steroid and muddling through.
The Hopkins pharmacy actually delivered my drug early. The surprised reaction of Rachel, my infusion nurse, summed up her surprise: “Shut up!” If the pharmacy keeps doing that, it runs the risk of raising patient expectations.
Only this morning did it dawn on me that there might be a relationship between my immunotherapy and my body’s reaction to the poison ivy. Dr. Hahn was impressed with the extent of my rash, but said that it appeared to be typical. He cautioned that if the rash did not seem to be getting better in the next week or so I might consider getting a course of steroids and defer my next infusion. I’ll see how it goes.
While at Hopkins, I made arrangements to celebrate Jennifer and my 33rd wedding anniversary in October by booking flights and hotels to Edinburgh and Dublin. Those two cities have been on my bucket list, and with the UK on sale post-Brexit I was able to find round-trip flights on Aer Lingus for about $600 per person. We’ll spend 8 days in Scotland and 4 in Ireland. I'll use SPG program points for hotels in the city centers. I reserved a bunch of travel guides at the library and have been browsing recommendations from TripAdvisor. I also spent time clicking links in Wikipedia about Scottish history, the 1916 rising in Dublin, and it wound me up to lean so much more. I find that reading up on places I'm going to visit is part of the fun of travel.
I was able to slot this trip between two infusion appointments. I’ll have an infusion the day before we leave, and another the day after we return. I’m used to scheduling my travels around my infusions. I’m somewhat torn about whether I should continue my treatments after I hit the two year next spring. On one hand, I would like the freedom from having to get treatments every two weeks. On the other had, those treatments are why I’m still alive. It’s not like I would die immediately if I were to stop my treatments, and if the cancer returned I could go back on treatment, but it seems churlish to feel inconvenienced by my clinical trial.
And then I think of my daughter’s boyfriend, who has been on dialysis for most of his life. What I do once every two weeks, he has done three times a week for more than 20 years. A few months ago he got a new kidney and has been freed from the dialysis tether. He is still getting used to his newfound freedom. Keeping his experience in mind lends me some perspective: infusions every other week for a couple or years is not so bad.
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