Saturday, July 04, 2015

A Report On The Latest and Upcoming Travels

It's been quite a journey, one which will soon be coming to an end as I approach my 69th birthday.  A week ago today, I was at Mayo Clinic in Rochester, MN having as much as possible of a 3.8cm astrocytoma (glioblastoma) removed from the right occipital lobe of my brain.

I say "as much as possible" because of the nature of the tumor and its location, it is impossible to remove all of it, and it will grow back fairly quickly.

I don't know when this started, but likely not more than several months ago.  I first started noting symptoms when Rosalee and I were in Madison, WI to hear JACK Quartet in two (wonderful, by the way) concerts at the University of Wisconsin.  I started noticing that the students up there were acting like they owned the sidewalk and were bumping into me.  I attributed it to the arrogance of college students who don't pay attention to old people, but soon it seemed the tables and chairs were getting to be arrogant too.  I thoughtfully figured out that, like usual, it was probably more me than them, so I went to see my eye doctor.  He gave me a field vision test and determined I had significant loss of peripheral vision in both eyes towards the left and down. He referred me to an ophthalmologist, who looked at the tests and said "Sure enough, you've lost peripheral vision."  She said it was most likely a mini-stroke or a tumor.  I had my own diagnosis, I knew it was glaucoma because I have had Type II diabetes for many years, although it has been controlled through medication and exercise -- no insulin.

Since I was scheduled to see a neurologist in a few weeks already, for an unrelated problem in several weeks,the ophthalmologist suggested I wait and bring it up with the neurologist.  I thought that would be a little awkward to tell a neurologist who thought I was there for a foot problem,  "By the way, could you check and see whether I have a tumor?"

At that point, I began requesting a referral to Mayo Clinic, where our local doctors send their hard problems anyway.  I was lucky that when I went on Medicare, to take the precaution of getting a PPO instead of an HMO policy so that for a little higher deductible, I could go anywhere I wanted for treatment. 

Although all of it is interesting to me, people's eyes tend to glaze over when I talk too long about myself, so I will try to skip to the most interesting parts, and, if I am able, fill in more details later for those who have a high tolerance of boredom.

On June 22, the surgeons at Mayo cut out as much of the tumor and healthy tissue around the tumor as possible.  Going in, they told me there was an 80 percent chance I would suffer additional vision loss because the tumor is located in the vision processing area of my brain.  I figured those were still better odds than a 100 percent chance of vision loss if I did nothing.

The operation was a success, in that I didn't die on the operating table, they got 98 percent of the tumor and I felt fine afterwards.  (One interesting thing I learned is that the brain doesn't have pain receptors and brain surgery isn't painful like surgery on other parts of your body.)

I spent a night in intensive care, a night in a regular room and was then discharged to come home and await further adventures.  We're not sure what the further adventures will involve until we have had our meeting with the treatment team on July 6, but we have been led to expect four weeks of rest, then six weeks of radiation, five days a week at Mayo, then four weeks of chemotherapy. My doctors are some of the premier brain tumor specialists in the world, and they may be able to get me into clinical trial for new treatments that may offer benefits in extending my life.  My vision loss is significant.  I am not blind by any means, but everything is slightly skewed.  I think I'm reaching for something over here and it turns out it was over there.  Rosalee started resembling a Picasso painting.  I can read, but only for short times with effort.  I'm a good touch typist, so I can type not too badly although I make a lot of mistakes. (This post will have been proof-read by Rosalee.)

I have been clear to my doctors, my family and I want to be clear with my friends.  I am not interested in length of life as much as I am in quality of life.  I love life.  I love my wife, my kids, my grand kids and I want to be around as long as reasonably possible so spare them the sadness of not having me here and to see them develop and enjoy life as well.  But death is not scary to me.  If everyone were still alive who had ever lived, this would not be a pleasant place to live.  (Can you imagine the traffic with all those 200-year-olds driving slowly along in the left had lane with their right hand blinkers going?)

However, you think we got started -- the big bang, creative evolution, a semi-intelligent being doing its best to create the perfect world, the end is clear -- everything dies.    That does not scare me.

So, to my praying Christian friends, go ahead and pray if it makes you feel better.  I don't expect a miracle, in fact, it would be upsetting to me to conceive of a God who because of the intercession of a few select people, would say, "Okay, I'm going to flip a switch, and this 69 year old man who already has more of everything than 90 percent of the rest of the world is going to be cured, but the people in Africa dying of malnutrition, the children in South America being sexually abused, the kids in the United States without loving homes can just suck it up.  It's all part of my infinite wisdom which I choose not to let anyone else figure out."

If you are interested in labels, I think I am more of an agnostic than an atheist."  "We do not know what we do not know"  to quote an incredibly stupid man who said one smart thing. I am at peace with whatever happens.  If something unexpected occurs, and I turn out to live another 50 years, I won't be disappointed, and I hope no one else is.  If I don't make it the average of 14-18 months from diagnosis to death, that is fine too.

So, that's enough for the first post.  I welcome your feedback.  I probably will not be able to respond to each post and email because my ability to read and write are quite limited, but be assured that I crave human contact and will interact with you to the extent I am able.


Jblaford said...

Gary referred to it as the "circle of life."

Missy Larson said...

hi john, missy larson here. Fascinating outlook and one i find personally inspiring. Thanks for taking the time to write this. While i am not a praying woman, (also more on the agnostic side) i have been sending all my good vibes your way, and have had many thoughts on your behalf and your family. Here's hoping you are able to be at peace as you deal with this life changing situation. I will continue sending my positivity as far into the universe as i can.

JLF said...

Per your suggestion in another communication, I am praying for the refugees in Syria and the Far East. But when I do so, I think of you. I understand your philosophical approach to this kind of illness, but it still sucks. I'm sorry for this loss for you and for your family and hope that things go as easily as possible. Perhaps, for my sake, in the absence of a miracle, some random event might make this prognosis inaccurate, because I will miss you .


Linda Wolfgang said...

John, you have a wonderful and healthy outlook, but as Lamar said, it sucks. My thoughts will be with you and especially with your family--sometimes I think families have the more difficult ordeal. As a nurse, I understand your diagnosis so I will keep you in my thoughts and eh, sometimes even prayers. May your life be a journey without pain.


Mel Fros said...

Thank goodness the surgery did not make you less than the John I have come to love! Hugs! I resonate with your approach to this change of plans in your life. You are courageous; setting and example for me, cuz I just celebrated my 65th, and am aware that my days are a gladsome, accepting way. I feel that we each are one with the Whole. Our comings and our goings are as they are meant to be.

I wish you could have been with us three on July 3rd, in the cover of darkness, deep in the prairie grasses of Meadowbrook Park. There, my friend, we were treated to one of the most spectacular displays of flyer-works this side of Eden. Those tine bugs were dancing and celebrating and mating and doing the stuff of Life. And so it is with you...and all of us. We are doing the stuff of Life.

I look forward to our chat. Your friend, Mel

Katherine Bartel said...

Hi, John! I really appreciate your posts and your attitude towards this illness. Of course, I want you around for as long as possible, and will miss you even though I live far away. You and Rosalee have always been such good friends to us. This is a difficult thing to face, and I hope you will not have pain or a decline in the quality of life you seek.
I have always had the same question about intercessory prayer. In fact, when my father claimed to have been saved by prayer when he nearly died of pneumonia in India, I responded with, "So what was wrong with all those Indians who die of pneumonia every year??" Not to seem ungrateful--I was glad to still have my father, but it didn't seem fair to me.
If you are able to travel after treatment, we would love to have a visit from you. We live in a beautiful place. Kathy