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.

Wednesday, August 05, 2015

I'm Not Dead Yet

So there I was drowsily sitting on a bench in downtown Lanesboro next to the Root River in southern Wisconsin when I heard a noise in front of me and thought I must have died and gone to heaven. "But, wait," I thought as I slowly came to my senses, "I thought there were supposed to be seven.  What's the extra one for?"  Then I realized I'm not even Muslim and it was probably too late to make a death-bed conversion at that point.  Upon further reflection, I knew I could never be a martyr, even with my reward just three feet away.  And, finally, as I recovered from my vision, I said to myself, "I'm 68 years old, just who do I think I'm kidding?

After I calmed down, I noticed the girls were trying to take a picture of each other, and could really use a volunteer to push the button of their i-phone.  I decided all was not lost despite my non-Muslim and unwillingness to become a martyr status.

So, I quickly volunteered, forgetting in the excitement that I have lost about half my vision, particularly to the left of my nose.  Try as I could to point the camera towards the middle of the bevy, I kept cutting the last three ladies on the left out of the frame. The young women were good-natured about my difficulties and kept giggling and trying to help me get the camera positioned in the right direction.

Rosalee was in the antique shop across the street and when she came out all she saw were a group of  giggling young women in bikinis clustered around me.  She quickly perceived that someone needed her help; if not me, then some seriously under-dressed young ladies.  She took the photo I had so gallantly struggled with, then prevailed on the women to pose with me for a picture I could send to make my three bachelor brothers jealous of my chick magnetism.

Tuesday, August 04, 2015

A Wonderful Vacation in Wisconsin

So here we are, in a beautiful small city in southern Wisconsin, known for its world-class health facility, staying at a guest home run by a small religious sect partly named after an obscure 15th-century Dutch priest whose first name rhymes with memo.  His writings were called "Memoranda." (For the literal-minded, this part is not true. )I hate to be so cryptic, but I'm trying to avoid Mr. Google's miraculous powers of detection in case I want to be catty or unkind in some of my descriptions.  I know it would be far far preferable to avoid saying anything that might embarrass me, but it wouldn't be nearly as much fun. 

The cost of staying here is all of $40 a night for a small room, some with private baths,but including a "continental" breakfast. I don't know what continent invented these breakfasts, but they have included freshly-baked cinnamon rolls , baked oatmeal and home made granola.  The downside is that this is run as a religious mission, although as is typical for the followers of this obscure Dutch priest, the mission part is very low key.  There are  a dozen religious plaques around, and there is a prohibition against television, radio and alcohol.  Members of this sect can have computers only for business use, but there is a well-functioning Wi-Fi and no attempt to monitor guests' uses of their computers and smart phones. There is a sign stating the dress code, which includes no shorts, no tank tops, and no "scanty clothes."I am going to leave my spandex in my suitcase. English people with only a popular media knowledge of the Amish, might assume that these people are Amish but any aficionado of Amish culture would recognize that they are not Amish.  The women's head coverings are different, their dresses are handmade but colorful and well-fitted, the men's beards are different, they drive  cars and have modern conveniences.But, like Amish, they have their own elementary schools,eschew higher education and keep a tidy and spotless house.  
Our hosts, Bill and Sherry, are cattle ranchers from Montana.  To quote the Bible, they are the "salt of the earth."  They are unfailingly helpful, polite and gracious to a sometimes weird line of people who come through their doors. Bill nods and chuckles and refrains from offering advice to the desperately ill and hypochondriacs who come to their door for a cheap place to stay while waiting for or receiving treatment at the world-famous health care facility in their city.  They smile and listen and refrain from expressing incredulity at the stories told by some of their guests who seem to be competing with each other for most heart-wrenching story of sickness and disease.

One guest with whom I am closely acquainted tried to short cut another guest's gruesome story of failed surgeries, scar tissue and infections with the helpful suggestion that "You probably don't want to tell us all the details."  Undeterred, the suffering chronicler kept going. Finally, the listening guest with whom I am well acquainted interrupted again to state a little more forcefully, "Maybe, we don't want to hear all the details."  That still didn't deter the talker. The guest with whom I am well acquainted and who isn't known for tolerating fools gracefully was about to say something more drastic, when he realized that he would embarrass his gracious hosts, so he kept his lips zipped.  A rare instance of learning by example.