Thursday, March 27, 2008

John's Roller Coaster Week

As I mentioned yesterday, this was a roller coaster week for me in my battle with cancer. Tuesday was especially tough. On Tuesday I met with the doctor who will direct the radiology aspect of my treatment. Frankly, I'd rather not mention the man's name because, as far as I'm concerned, he's on thin ice with me and is on probation as my provider. I may have to fire him and find another man or woman: one who fights.
In my opinion (and Karen's), the man's assessment of my chances was unnececessarily harsh. He spoke in terms of stop-loss and of limiting the evitable and growing cognitive deficits and of the waning years. I don't believe he thinks this disease can be defeated. He spoke of me as a victim. I nearly came across his handsome desk and smacked him for that. A VICTIM?! Don't EVER use that term to describe me or anyone fighting this tough opponent. We are only victims if we resign ourselves to be. I am no hero but I will go down fighting to the end. Glioblastoma hasn't defeated me. I am not so certain of my radiologist/oncologist. And this was the initial consultation.
The consultation was the longest, sadest hour of my life beyond compare. The worst part was watching how it tore Karen apart. When it was over I just had to call Martha and cry like a child. What kind of doctor specializes in a desease he doesn't think can be beaten? He should have become a coroner. Karen calls him Dr. Death.
To his credit, the doctor saw what he was doing and apologized for starting off on the wrong foot. He offered to refer me to someone else. No. I want him to tow the line. I may have to teach the man faith in science and the science of faith. Either that or he's history. I, on the other hand, will turn out just fine. I can be angry when I want, can't I? It can be a useful emotion. Just ask Lance Armstrong about that.
On the other hand, there has been much to be optimistic about this week. My network of friends, allies, and family has been stronger and more powerful than ever. Mary Anne's Oncologist friend, Brian, has offered to review my pathology files. Brian is of a newer, fresher school of cancer practice, one in which success is an expection, even for brain cancer patients. How blessed am I that my sister has such a friend as this?
My step-daughter Ashley has given me hours of quality time. We've really enjoyed our time together.
Yes, Karen has fractured her ankle . Karen suffered a hair-line break in a hospital visitor's chair as I slept. Dr. Atwood gave her a cool sports-style cast and proscribed two more weeks of wear (as opposed to just limping around on it). If Karen had sought treatment immediately instead of refusing it for two weeks she'd be further along today.
for all I have to asy for now. I am feeling a little lonely doing all the blogging. If no one else is really interested in pgrticipating with this, my posts will become a good deal less frequent. I appreciate how busy your lives are.

12 comments:

Nate said...

We're all still here. Good luck with the radiology next week. Hopefully you'll see some positive results!

Anonymous said...

John, your blogs are important to all of us. Some of us are just learning how to respond. This is my second attempt and I hope more successful than the last. Hang in there. We all believe in you.
Love, Laurie

Anonymous said...

Dear John,

I'm so sorry for the news you got this week. Not at all what you were expecting. But please don't stop blogging -- I suspect a lot of us were just waiting for more news, but knowing how much our responses mean to you, we'll be sure to send them more often!

I have a good friend from church who was diagnosed with a very unusual malignant brain tumor eight years ago. Her surgery and radiation were done in Columbia, but it was rare enough that even with the huge medical community in Columbia, her docs consulted with neurosurgeons at Duke for her treatment protocol. It was a different type of cancer from your diagnosis, but I remember at the time that Duke had a huge specialty in neurosurgery/brain cancers. I'm sure your docs are aware of the many resources out there, but in case you want to do some additional digging, I believe the guy's name from Duke who consulted on Michelle's case was Henry Friedman.

Thanks for letting us know. It helps us know how to pray. And thanks for the honesty of your emotions...we're not giving up and we know you aren't either.

Lots of prayers coming from mid-Missouri...

love,

Ginny B.

Anonymous said...

Hello dear Brother John,

You may know, you are so close in our thoughts every minute.

I am so glad to know that Brian is getting your path reports. I have been very encouraged by his following "our" case because his family are friends of the Reeds. Know, too, that we know some people who are very close to Duke and have great accomendations should you want to go there. We are always looking for a reason to visit! : )
I think they would put you up without us!

much love, Martha

Danielle said...

John,

Thank you so much for updating your blog. I'm sorry the time with the doctor was upsetting. We all still know though that you have amazing strength, courage, and faith as do all of us -- we are rooting for you! And I second Martha -- we have some very fine accommodations here should you ever need to come out here. We would feel more than privileged to have you and Karen stay here so please know that is always that option. We love you lots and continue to think about you every day.

Love,
Danielle

The Little Sister said...

John, I check this blog all the time. Please don't give up on this as so many people are using it to keep updated on you. Many, which might have included yourself a while ago, are feeling for you, but don't know to get their feelings down. Be patient my friend.

Sometimes people should just feel free to say "Hi John, K-State basketball RULES and KU basketball is the pitts!"

We are all humbled by your amazing courage and grace.

We all love you out here in very sunny California!

Anonymous said...

John--

I haven't had anyone else at work this week so it has been a crazy week but I am hoping maybe to come by one day next week over a lunch hour to see you. I agree with everyone else on here that you just need to explore your options and understand their are two parts to success: faith and expertise. Those that do it more often know more about it. You may want to teach the doc faith but also make sure you are finding the person or center with the most expertise as God gives us free will so we can seek out the tools to be successful!!! God bless you all -- Mary prays with us for you every night and we are still here so please call, whatever you need! I think rooting for the Jayhawks might take your mind off it. Focus on that tonight as we need your support!! Again, don't be afraid to call for relief it you need anything!

Brian

Lil A said...

John you are-- and always have been-- an inspiration and role model to me. Dan and I will be here every step of the way- with love ( and let us not forget coffee and chocolate of course):).

Don't ever doubt that you are always in our thoughts and prayers!

Love You--
Little A'

(see I get on here too ;))

Anonymous said...

You are a very very strong person, Uncle John. I admire so much about your faith and courage! You are always in my thoughts and prayers...hang in there. :)

Love you!
Laura

Anonymous said...

John,

We hope you don't give up on blogging. It let's the people who don't get to talk to you and the one's who don't want to keep calling others for information on you and your family up to date. Keep moving forward and God will be with you through this cancer deal. Keep the faith!

Bruce and Debbie Rosenberger

Anonymous said...

John,
I don't believe we have ever met, yet I feel I know a part of you. Martha and I are friends and the picture she has painted of you over the years is one that makes me want to know the rest of you.

The journey you are on is full of mountains and valleys. I am glad you have decided not to stay in the valley and are on your way back to the mountain top! I hope your dr. joins you on your journey to the top.

I will continue to pray and believe in your full and complete healing.

Stay strong! Stay positive!
Keep the faith!

One of your new friends in Ozark,
Sharon

Marilyn said...

John---
You keep up your attitude and you will be fine. I know several people who had the diagnosis of glioblastoma. They beat it and are going strong--and that was 15-20 years ago when they were diagnosed. Sounds like you got paired with a guy who possibly needs a refresher course in empathy.

Our daughter Katie kept asking where your surgery was located, etc. She hopes to be a surgeon someday. I showed her your battle scars and she was quite impressed. However, you have done more than your share to help further her medical education, so we will take it from here!

You are in my prayers every day and I know you are going to be ok, John.

It is an honor to know and love such a classy family as the Tiffanys.

Go get 'em John!

Love,
Marilyn

P.S. Just have to add -- ROCK CHALK!!!