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.
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.
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.
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.
Ken -
ReplyDeleteAs a disinterested but interested third party
reader, I would encourage you to keep getting
the medicine. First, it's seemingly keeping
you alive, which is a damn good thing, I'm sure
your family will agree and second, from an altruistic
perspective, you are contributing your trial to those
who will follow.
If they will allow you to continue and you experience
no adverse issues that would force you off of this, my
counsel would be to continue. I say this based on having
read your entire blog and my understanding of your path
but also with a somewhat detached (can I really be that
detached when I am also fighting BCa????) view from
'outside in'. NB: I am not an ethicist, simply a reader.
The alternative isn't that great, and as with any of
these therapies, what doesn't kill you may not in fact
make you stronger. My aunt was on chemo for her lung
cancer before they had Opdivo and par for the course,
the cancer found a way around it. She passed not long
after. I would be worried that discontinuing this would
give cancer the very thing it seeks - a way back in.
Best,
Anon. Reader.
Found your blog this morning and can't thank you enough. I start Opdivo in a few weeks for metatastic anal cancer and was looking for personal stories. I'm going to start at the beginning of your treatment and read forward. Congrats on your new grandson! -Laurie from Sacramento
ReplyDeleteKen, this is fascinating reading. You really ought to write a book. Your narrative abilities, and inclusion of all of the details, including social, financial, work, family, insurance issues, and scientific details/medical options, lead me to this conclusion.
ReplyDeleteAll you would have to do is take these notes, and use them to compose a book. It wouldn't be that hard.
I recently read 2 bladder cancer books, "Changing Normal" and "Back to Life".
Your story is every bit as interesting and well written as these two books.
I paid $26 for the first book, and $15 for the other one.
You really should consider this. I enjoy all of the details, complications, descriptions of waiting times, post op events, humor, family events, doctor's names and opinions. It's all great reading.