Sunday, August 30, 2015

How Am I Doing?

How am I doing is what most people are asking me these days.  It's hard to answer the question, because the truth is, I don't know. On the most basic level, I'm doing great.  I have no pain, I'm sleeping and eating well.The weather here in southern "Wisconsin" has been fantastic, with sunny skies, low humidity, temperatures in the low 80s,so there is nothing to complain about, weather-wise. The accommodations here at the guest house owned by the American Cancer Society are great.  We have a large corner room with windows on two sides, kitchen facilities where we can cook our own meals. easy walking to the buildings where I see my doctors and get radiated.  There is nothing to complain about accommodations-wise.

The treatments are very easy. For radiation, my head is strapped into a plastic-mesh hockey-goalie type thing and I have to lie immobile for 10 minutes or so while an x-ray-looking type of machine whirs and burbs and buzzes around my head. I feel nothing different or unusual while this machine is going through its paces. I am more than half way through the radiation and chemotherapy with just two more weeks to go after this week.

For chemo therapy, I take a small pill to prevent nausea two hours before the radiation is scheduled and two small tablets of temozolomide one hour before radiation.I have suffered no ill effects and I have nothing to complain about treatment-wise. I met a man recently whose glioblastoma has been in remission following radiation and chemotherapy for nine years.  So, I always have the hope of being above average in my survival time.

Family and friends have been very supportive.  We have gotten lots of visits, telephone calls, cards and emails. Rosalee has been wonderful in organizing little outings to get me some exercise and to keep from getting bored.

So, why am I writing this post? Well, because on some level, I am feeling uneasy; I don't feel like I'm doing so great.  It's the vision thing for one.  I'm not blind by any means, just like the doctors promised. I can see and recognize people,provided they are not standing on my left side.  I have blank spots in my vision on the left side.  Sometimes I have double vision and see two things beside the blank spots.  It would be nice if the blanks and the double vision could be averaged together so I would have one complete vision, but my brain hasn't learned that basic math lesson yet.  I can see and enjoy trees, flowers, the sky and grass, beautiful girls and women. I really have nothing to complain about, other than I have nothing keeping me from seeing and hearing ugly loudly-burping men in the dining hall. So why do I want to start harumphing when I can't find the frigging mailbox?  It's not that I don't know how to find it.  The mailboxes are on the wall beside the reception desk.  I can make it down the hall, down the elevator, to the reception desk and over to the mailboxes all right. I know that I have to start at the wall and count three boxes to the right.  But I try that and Rosalee warns me that I'm about to steal someone else's mail because I didn't start counting at the wall.  I thought I was, but as it turned out, I wasn't seeing three boxes between the wall and where I started counting.

I've accepted the fact that I'm never going to be driving again -- well, maybe in a demolition derby.  I would actually like to try that.  Accepting that I may never be able to read a book again is harder. I've been reading a little on a Kindle where I can adjust the size of the text, the length of the lines and the spacing, but I quickly tire.  It's taken me three weeks to write this blog post and I'm afraid you will find little humor in it.  Enough complaining.  Rosalee made me get a new computer yesterday that has a capacitive screen, so I can use my fingers to navigate and to make the text larger or smaller, just like an iPhone.  That seems to make the computer work a lot easier. I may try reading on my computer. As I've said from the beginning of this adventure, I'm not afraid of death, I'm at peace with knowing that my demise will probably happen sooner than I had hoped.  It's the living with my losses that is pissing me off.


Debra Hope said...

Well, brother, you know Cliff and I have been there and done that. Can't imagine not reading, though. And I know it's scary and boring and stressful and annoying and a few other words I cannot write. It is, however, good to know you're still the John I remember! All I can say is "This too shall pass." How I do not know. But, hey, we were excited to be told by our new Emory doc that Cliff is one of the 15 longest living lung transplant recipients in the world! Share our joy if you can. Good thoughts your way.

Milton said...

Good update! No BS means no BS. So you gotta talk about the frustrating bits, not just the bikini tubers.

Becky said...

You are correct, we've been wondering how it's going. And I have wondered how it feels inside a head while the rads are penetrating the brain. So it feels like nothing and you're left with the inconvenience and the pissed off feelings. In spite of that, I still pick up a sense of humor as you describe the mailbox and the idea of a demolition derby.

Gretchen said...

Good to hear from you, John. I've been looking for a post. Well, I suppose we don't expect humorous posts at this point. I'm appreciative of an honest appraisal of how things are going there. It was interesting to read what your treatments are like. I definitely think not being able to read would be a super sucky side effect, maybe one of the super suckiest possible. Although incontinence, loss of bowel control, uncontrollably uttering obscenities, having my head swell up 5 times its current size - well, maybe they'd be worse than not being able to read. Let me know if any of those happen. My fingers are crossed that they won't. Meanwhile, enjoy the flower gardens Rosalee is sleuthing out.

Mim said...

Thanks for telling it like it is. Don't apologize for mentioning the low points. In your shoes I think I'd give it a good OT wail.
Yesterday I thought of you when I had laser eye surgery to stop loss of sight from my glaucoma (we hope it works). Mine is nothing compared to yours but I find it scary to experience blurriness and bouts of misreading. Can't fully imagine what you're going through.

Anonymous said...

Hey John,
I hope you are back in familiar Illinois territory now - or soon. At least there's space between mailboxes on your street and there's Rosalee's lovely garden to see and smell. Take care and see you soon.