Tuesday, July 07, 2015

A Wonderful Trip to Minnesota

I am happy to report  that Rosalee and I had a very enjoyable trip to Mayo Clinic in Rochester, MN yesterday and today to meet with the treatment team for my brain cancer. My youngest brother, Milton, who is 25 years younger than me, and his wife, Beth drove us to Clinton, Iowa, where we met up with my oldest son, Jeremy, and his wife, Bomina, who happens to be a registered nurse. Jeremy and Bomina drove us to Rochester, stayed the night, met with the treatment team with us and then drove us back to Clinton to meet up with Milton and Beth, who brought us home.

Bomina has been invaluable to us in helping us to understand what the physicians are saying to us, in asking the right questions, in taking notes on the answers, in working through the red tape with our insurance company and the specialty pharmacy companies.  And, I guess it goes without saying, but it should be said anyway, none of this would have been possible without the solid support of my wife, Rosalee. (I feel like I must have stumbled upon a copy of an Academy Award acceptance speech and at any time the music is going to start, signaling me to stop with the shout-outs to my family and get off the stage.)

The hardest part of this, up to now, has been turning over my car keys to Rosalee.  I have been driving since I was 13 years old -- and have done nearly all of the driving on family trips for our more than 40 years of marriage.  Turning over the car keys brought home, like nothing else, that the independence I value so much is gone and will never come back. No more grocery shopping, which was my chore for many years and which I loved.  No more trips by myself on Sunday afternoons to see movies.  No more sneaking off to the ice cream store. My penis shrunk three inches when I turned the keys over to Rosalee. (This was not a scientifically valid measurement and should not be relied upon by others for its validity. Individual results may vary. Objects in mirror may appear larger than they actually are.) Please no wisecracks from the siblings who the nurses at Mayo were referring to as "the naughty Otto brothers."
The best part of the trip was the quality time we got to spend with Milton and Beth and Jeremy and Bomina.  Milton and Beth gave us some valuable insights into dealing with this issue with our children, particularly when our religious beliefs are different in many ways.  Jeremy, Bomina, Rosalee and I got to talk for extended periods about the impact of this disease on each of us, on how much we love each other and support each other as we work through these hard times. (Okay, I hogged more than my share of the talking, but as a dying man, I should be afforded some privileges.)

I am still feeling surprised and exhilarated that my loved ones and I can talk about what is happening is such an open and frank fashion, not being overly-pessimistic, but not looking through rose-tinted lens either.  I was never able to do that with my parents, before they died of cancer.  My father particularly, was in deep denial, despite his profound religious beliefs, talking to me the week before he died of business decisions he had made "in case something happens to me."  I refuse to shrink from the truth. I refuse to be afraid. I am at peace.
Oh, the treatment plan.  It's pretty much what we expected.  Radiation will start July 31 and continue at Mayo five days a week for six weeks.  I don't expect any major side effects, possibly some fatigue and decreased white blood cell counts which could make me more susceptible to infections.  Throughout the radiation, I will be on  low doses of chemotherapy,with the drug temozolomide. (Temodar.)  I am told that any side effects of the chemotherapy, like nausea, will be very mild, way too mild to qualify for a prescription for medical marijuana.  That really sucks.  I never got to fully experience the 60s in the 60s and I had hoped that that in my personal 60s, I could find out what it was all about.

And now for a word about prayer.  I deeply appreciate and am humbled by the many expressions of support.  I got a card from a woman in our church who understands perfectly where I am on prayer.   She said, "We're praying for you -- whether you want us to or not."  That's fine.  I recognize the prayers as an expression of love and concern.   I certainly would not want to stop anyone from praying if that makes them feel better. It makes me feel better that they love me and feel the need to express that love.  But as I said in my first post, I cannot accept a concept of a deity who would pull strings to change the laws of nature to help a 68-year-old man who already has so much when so many millions of humans suffering horrible deprivations are left to fend for themselves.


Eldon Miller said...

John, I have not seen you or had contact with since college days at EMC. I was always closer friends with your brothers Gene and Wilmer, since they had lived some at our house in Goshen in the Late '60s. Somehow, my wife found a Facebook link to your post and read it to me on the 4th while we were driving home from vacation. I'm sorry to hear of your situation and hope for the best. But I appreciate your honesty and the Otto wit and sense of humor that you express. Having lived and travelled in a number of Latin American countries for almost 50 years, I am struck and dismayed by many Americans' sense of privilege and "God blessed us" mentality. And I cannot forget the incredible people in those places I have been prileged to meet whose lot in life is so different from mine, and yet have taught me so much. So, hang in there and keep writing. Thinking of you.

Cindy Breeze said...

I haven't read your blog for some time, John, but at the suggestion of several of our mutual friends, I logged on this morning. I have to say, you inspire me. And what I think is the best part of your blog - and the remarkable gift that you and your family have been given (even though the diagnosis stinks) - is that you are all able to talk together about all this, share your love for each other, probably share plenty of tears, and I'm guessing - if your blog entries are any indication - share plenty of humor. I'll say again - you inspire me.

PG said...

I remember (as much as my memory still works and can be trusted) riding with you in the car all the way to NYC, for Milton's graduation. You were meticulous about keeping track of miles in a little book. Even so, we ran out of gas on the interstate, but you calmly pulled to the side, waited a while, and then managed to muster up enough fumes to get us to the next gas station. You should be glad your penis has three inches to shrink. And I appreciate being able to go to the movies by one's self; that is my preferred movie-going style, which is why I tend to shun Ebertfest. So, here's an offer. Before you return to Minnesota, I'm at your disposal to drive you to and from the movies. You don't have to share the popcorn. I'll go to a different movie and we can compare notes afterwards, while shopping for your groceries.

Lauren D. McKinney said...

Well, John, I hope SOMEONE gives you some marijuana. PG?

Anonymous said...

John! I love and miss your sense of humor!

Kristen Grubb/Conley/Verchota :)

Lori Stewart Weidert said...

Well. Hell. I read this post this morning after your son posted it on FB, and I've been chewing on it since. It sounds like you are taking all of this better than I am, so I will soldier on while you get through this. I know you have dozens volunteering to do this or do that, but I mean this: Give Rosalee my email address and/or phone number, and I will gladly come over for some bossing around. I always need someone to tell me what to do. As long as it's not Clint. Or my boss. Or any of my girlfriends. Pretty much you, and my son, you are the only two allowed to boss me. Love ya John!

GeGe said...

I hear you, my friend.
I wake up every morning, and say "good morning, beautiful day," Because every day we have is.

Joe and Jackie Hamlett said...

Joe and I have been reading your bog for just a few days, but it contains a lifetime of insight, wisdom, compassion, and honesty along with you being so very real. Joe remembers you most from living on the same floor at EMU one year, and then when you helped us with our wills, and medical directives. We wish we would have gotten to know you and Rosalee more during our time in Champaign. Unfortunately, we only got to know a few people there. Our hearts go out to you and your family as you walk this journey of serious health challenges and treatments. So glad you have your family! What a gift they are. You are such a humble man. Your grace and humor flow from your writing, and are a healing inspiration to us all. May God lean in close to you. We will be praying for your journey. Gods peace to you and your family.

Gene C. Miller said...

Thanks for sending these dispatches from the front, John. Were I in your shoes, I suspect I'd be reaching for the hemlock--but we don't really know until we're actually in the situation, do we?

I hope you're writing/dictating some memoirs for your children and your children's children. They'll treasure them after you're gone because they will be able to hear your voice again. As much as they might love Wilmer, they'd rather hear your version.

Gretchen said...

Since reading the first post I just haven't had words. I'm trying to find a few. I just feel so totally pissed off at the overly large cancer gods sprinkling their germs of death on my dear friends and family. Some days I entertain the idea of a personal God and some days I think it's a frivolous construct of our feeble, uncomprehending frailties. But I pray - just in case. I like to think we are all somehow wrapped in a divine, cosmic Nurturer and the bizarre happenings that smack us upside the head all work to draw us closer to that cosmic nurturance. Same for the children dying in Mumbai gutters and those of us who have First World medicine. It's the ultimate human test. Submit. Yeah. So. Have fun with family and friends, especially the dear grands. (I'm doing that, too.) Keep the blog posts coming. Meanwhile I'll pray for your peace and comfort and for a cure for cancer.

Keith Hays said...

I remember a line from a folk song. Its an old frontier ditty but I heard it in the Sixties.

"If corn whiskey don't get me
Then I'll live 'til I die."

That is what we, you and I, are doing. We are living with the disease, and the chemotherapy, and the fatigue, and the concern of our families; but we are living - keeping on, because that is what we do.

I share your attitude about prayer. God has so much more important things to deal with in his creation than an old country lawyer in Illinois who is running out of time. If you must pray for anything for us let it be for Him to help us make this final journey with grace and peace and to help us to treasure each new day as the gift that it is no matter what trials it may bring to us.

Bless you John for helping me to light the wa.

peck said...

I wanted to let you know you have a reader in Seattle (although I'm in Champaign helping my mom recover from a stroke). I'm a friend of Milton's, and I also followed a Facebook link to find your writing. As I read your words, I hear Milton's voice in my head, so I hope his cadence and pacing are pretty close to yours. They wry humor seems to match.

Your storytelling and choice to bring your family along on your path is a true gift to those around you. Peace on the journey.

Kind thoughts,