Vous Et Nul Autre
This blog picture is of the brick that Tina and I bought to support the 1996 Olympic Games in Atlanta. The inscription, vous et nul autre (you and no other), is the commitment we made to each other that year when we got married.
Monday night, we read in the July 2012 issue of Atlanta magazine, that Dr. Ian Crocker is one of Atlanta’s Top Docs. Ian was my radiation oncologist up until last October when we no longer needed his services. We liked him very much.
Tuesday morning we met with him to discuss stereotactic radiosurgery. Remember that the surgeon left a small bit of tumor in my brain rather than risk compromising my left arm function. Our thinking was that he could blast the remaining tumor with high-powered x-rays and make me tumor-free without damaging healthy cells.
Dr. Crocker let us know that radiosurgery is not the solution we hoped it would be. Because that area of my brain had already received the traditional radiation therapy dose of 60 Gray, more radiation was likely to lead to tissue necrosis — dying cells. Dying brain cells could mean… all sorts of unpleasant issues. Even if he were able to successfully blast away the rest of the visible tumor, there are likely to be lots of microscopic cells that are just waiting to sprout into tumors that he could never eradicate. Too much risk for not enough reward.
Although the doc didn’t have any good news for us, he delivered the news compassionately yet straight-forward and professionally. He answered all our questions. He cared. I agree with Atlanta magazine — he’s definitely a great doctor.
Plan B
Plan B is to pursue the Novocure product. I’ll have to wear strange head gear and carry a sack of electronics. But that’s a small sacrifice for being able to live longer. Right? I just heard from Northwestern in Chicago that they can’t recommend Novocure alone for me. They suggest I consider other standard of care treatment, like Avastin in combination with other chemo drugs. They made no effort to explain why. It seems like just a turn-down letter.
It’s getting difficult to remain positive. On to Plan C, I guess.
UPDATE: This just in. Apparently, Novocure is back on! A determined wife is hard to stop!
Survival Numbers
This is not a very pleasant topic to think about. If you’re particularly sensitive, just skip it. “Knowledge is power” is my stance. We already know that 15 months is the median survival time from initial diagnosis and that’s with optimal treatment, which I think I have received. Median survival from the time of tumor recurrence is only 3-5 months without additional effective treatment. This data puts my expected death date around the end of 2012.
Novocure can potentially slow or reverse tumor growth. But as far as extending survival time, it’s not really any better than the best available chemotherapy. So maybe that buys me another six months or so (statistically). The big advantage is quality of life. There are not really any side effects to deal with.
Don’t worry — I still feel like miracles happen. I expect to beat the odds. But plenty of discouraging things have happened to me. The standard chemo isn’t effective on me. The trial wasn’t helpful. Radiation is out of the picture. Future surgeries are risky. A Novocure provider isn’t interested in helping me. I need to find something effective on this tumor.
Big Questions
I’ve spent some time considering my options and the implications of my choices. It’s easy for thoughts to wander into philosophical subject areas. What’s life all about? What (if anything) matters? I think I’d like to live a long life, but does it matter whether I have six months or six years? I know some people will miss me, but life goes on.
Do I continue with experimental treatments and become a health nut? Or are there better ways to spend my time, money and current good health, like spending time with friends and family and experiencing the wonders of this world? With no children, I have no responsibilities really.
Don’t get the wrong idea. I’m not depressed about all this. It’s more like disappointment with a twinge of anger and frustration. Luckily this weekend a pack of good friend are traveling to Atlanta to take me to a rock show. There’s nothing like getting together with old friends to relieve some stress and aggression.
18 responses to “Vous Et Nul Autre”
Leave a reply to Kitty Cancel reply
Ways to Help
Your thoughts, well-wishes, encouragement and positive vibes are a big help. Financial donations to my fight are welcome as well. Please visit my Donate page for an explanation of how and why donations are helpful.
Meal Train
Sign up to bring us a meal via Meal TrainMEALTRAIN WAS A VERY HELPFUL RESOURCE FOR US BUT NOW IT HAS EVOLVED INTO BRINGING US SPECIFIC UNCOOKED INGREDIENTS BECAUSE of the wtict diet we are on.This is just as valuable to us though..
A glioblastoma journey 
I think you mentioned it in the blog before, but I forget what your thoughts on the subject were —- the burzynski clinic? I just watched the documentary on Netflix — not sure what to make of it…seemed like only one side of the real story was presented, but it was a hell of a story….
The Burzynski clinic is a Hell of a story. It filled us full of hope when we saw the documentary. After further research and discussing with many doctors we decided that it wasn’t the best choice for us. For one, it’s expensive. Ultimately, I’m not sure I believe that he has the solution. It’s difficult to know what is the right thing to do.
Anonymous, google the words “burzynski” and “Scam”. That should keep you reading all night.
As much as we wanted to believe the story, we ultimately decided it was more likely to be scam than truth.
Northwestern will be seeing us now (another Dr. has reviewed Ken’s information and we will be able to visit soon)!
YEAH!! I hope it turns out well!
Linzy
I’m just curious…and I don’t need backlash since I had to make my own at some point but did not need it…what does your “bucket list” consist of? Go have fun and leave a wide trail of memories for us all….
I’ve seen and done amazing things. I’m not saying I couldn’t come up with a hundred more things I’d like to do. But as far as things I HAVE to do before I kick the bucket, there is nothing. Thanks, Juanita.
WE love you Kebo! 🙂 And will continue to pray for you guys…for strength…courage…and good outcome from any and all treatments, etc…etc…. God is Definitely the best miracle worker I know! 🙂
Hate yall didnt get to go rafting with us last trip, but maybe we can try again soon! Or maybe the BEACH!! 🙂
Hope to see yall soon! Take care! 🙂
If you and Tina end up in Chicago again, consider extending it a night and swing up to Oshkosh (3 hours away) to see my mom. She’s a Hmong shaman and may be able to contribute on a spiritual level. I love your inscription above. Ken – you are an incredibly unique human being. Yes, everyone is unique in their own way but I mean in a very rare and unassuming way, you live very bravely, authentically and unafraid to be who you are. I see it in the thoughts you write in your blogs. Jim and I consistently say, we have never met anyone else like you.
Thanks, Hlee. I would love to meet with your mother. I’m very interested in the spirituality aspect of healing (and even daily living).
Let us know if you end up in Chicago in early to mid-August. Jim and I will be in WI then. You will need a good translator with my mom if you go 🙂
My sister has survived nine months after recurrence so far.
Ken have you talked with a herbalist? Someone I know has a friend with pancreatic cancer and after talking to a herbalist and getting a mixture made for treatment his tumor dissolved. I can’t verify this because I don’t know this man but it is worth checking out. My prayers are with you. Our awesome God is still in the miracle business. Barbara McLendon
Barbara, we did have some talks with people familiar with herbs, but I think it’s time to find someone who is the real deal. Thanks for reminding me of that.
Hey Buddy! Have a good time today at lunch! Miss ya man! Dennis
I’ll tell Jules we need to get together with you soon. Thanks!
I say read Love Medicine and Miracles again paying close attention to what Dr. Siegel says about miracles. It brought me to my knees. So many of your friends here have tried to gently nudge you in that direction. I truly believe the “guy who sits high and looks low” has given you a pretty clear wake-up call. No matter how your cookie crumbles, that’s one call you’ll never be sorry you answered. Love, Kitty