15 February 2012

Update from the Honey Badger Survivor

It’s hard to know where to begin, or frankly what to say that somehow seems fresh and additive, but I’ll give it a try in the interest of direct communication.

Life has settled into something of a routine, which for a long-term retired person, doing what he wants, pretty much when he wants, is not necessarily a wonderful thing.  I AM NOW SCHEDULED!  M-F go for radiation in morning (not early, but no sleep ins).  MWF nurse comes to change butt dressing (about an hour).  PT every day for about an hour (in house thank goodness, with therapist/tormentor observing a couple of days during the week). Then there are the doctor’s appointments:  surgeon every two weeks, medical oncologist every two weeks, infectious disease specialist periodically, radiation oncologist weekly (but immediately following radiation).  I am also on oral chemo, which is a small capsule with water every evening at bedtime.

All the books people have given me, and other amusements lie fallow in the shade of the general household stuff that must be fitted in otherwise.  But thank you anyway.  And I hardly have energy or time for vocalizing, and the muscles there need a lot of therapy too.

So that is my life, at least for now.  In terms of symptoms, I have been relatively free of anything that gets in the way of simple tasks.  I am still quite weak, in spite of the PT, but I recognize small bits of improvement.    Roughly two weeks (1/3 of the course) into the radiation and chemo I am still symptom free, although they say expect some weakness and maybe headaches as time passes.  No pain for now, only the inconvenience of carrying around the vacuum appliance which is stimulating the wound healing on the backside (and doing a very good job, too).

My vision continues to be an issue, but I’ve made an appointment with the ophthalmologist, and have identified an eye therapy specialist in Wilmington who may be able to help with the peripheral and any other more challenging vision issues.

My mental capacity seems ok, although I continue to have a little “fuzziness” that mainly affects my attention span and leaves me a little lethargic at times.

Through it all, Zora has been a huge help, especially since Winterthur Museum remains closed until March.  And about the time she will be going back to work, my brother Henry will be coming to visit for a bit more than a week.  My other brother, Alex, was here last week and worked my honey-do list down to manageable proportion, and was great company also. By the time Henry leaves the radiation and chemo will be just about over.  I will continue to have supplemental chemo treatments throughout most of the year, but I get 30 days off of everything starting March 14!  Hallelujah!

We are still blown away by the volume of emails, cards, letters, food, drivers, and all manner of kindnesses that folks have sent our way over these past many weeks.  We cannot begin to repay in kind, but hope that we can send it, with interest, to others in need.

There may be more to say, but this is what you get today.  I’ve been sitting on the butt-sucker too long, and the song is over.

Thanks for your love and support,

Tin-man