Going for the superlative
Dr. Friedman: The polio vaccine isn’t an option for Alison. Not now. Not in the future.
Me: Thank you, doctor. We’ll continue doing what we’re doing then. I’ll save her, somehow.
———-
Years ago, when Alison and I just started dating:
Me: (struggling with the tip on a check) I’m a clear exception to the stereotype that all Asians are good at math.
Her: (laughing and taking the check) I actually won the Unified Math competition in my school as a kid.
Me: You beat out the Chinese? I don’t believe it.
Her: It’s true.
One of the things I love about Alison is that she never settled for second best. If she did something, she went full bore.
She didn’t just work in a non-profit, she actually flew out to Africa and Asia on the reg to help out.
She didn’t just study Spanish, she got a certificate in fluency and lived in Spain for while.
I could go on.
Unfortunately, this is also true of her cancer. She not only has what is considered the worst type of cancer – a brain cancer – she has a glioblastoma, the deadliest form of brain cancer.
And she not only has a GBM, she has the rarest type, one that passes the corpus collsum. And she not only has the rarest type of the deadliest type, she has the most difficult one to cure, the butterfly glioma.
It’s the one time I wish she didn’t go for the superlative.
When this all first happened, pulled out every favor ever owed to me that had any chance of helping us.
To this end, someone got me in touch with Dr. Henry Friedman, the doctor on the 60 Minutes show Killing Cancer and I spoke to him about potentially getting her the vaccine.
He told me then – and we spoke again two days ago – that because Alison has a butterfly glioma, she would never be able to participate in the vaccine now, or in the foreseeable future.
Obviously, this isn’t what I wanted to hear. But I accept the world as it is, not as I hope it be. But it doesn’t mean I’ll stop looking for a cure.
I just want all of you (very kind and well-meaning) readers to know that it’s not an option and will never be.
Our search continues.
Location: home today, dunno for how long
Mood: scared
Music: I don’t mind. Without you it’s a waste of time
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5 replies on “60 Minutes Killing Cancer Polio vaccine isn’t an option”
Dr. Keith L. Black in Los Angeles at Cedar Sinai is treating a friends relative for a glioma. Not sure of the circumstances around her diagnosis but she sent her scan to him for another opinion and he took on her case. Two other doctors told her there was nothing more that could be done. Just thought I would pass this along.
Patty – thanks for this. We are finding it difficult to travel cross-town, let alone cross-country, I’m afraid. Right now, we are focused on having her gain weight while the tumor is temporarily stable.
The nature of this disease is that you can only really fight on part of it at a time, yet it tries to take everything away from us.
Hi Logan,
My name is Sam Yang. I am a friend of Rene’s, was just in NY visiting and training at Radical. I wish we had a chance to meet.
(Rene is a wonderful instructor, wish I had someone like him when I was coming up.)
Everyone’s experience with illness is unique, so I won’t say the cliche of, I went through the same thing, because I haven’t. I have no idea exactly what you are going through. But, what I can say is, like you, I continued to write and train while family members were ill. From blue to brown belt, cancer struck my family 4 times.
Writing brings clarity, training helps you remember that you as an individual are also worthy of consideration. I started my website from a hospital cot, and I wrote and wrote and wrote, and so far, nearly all essays published, I had written from there. Even newer articles I am publishing now, I wrote the first draft over a year ago.
There is no right or wrong, whatever you feel is how you should feel, and however you deal, is how you should deal. For me, writing was my therapy.
You and Alison are in my thoughts. Keep writing, it helps.
Peace,
Sam
Hello, Sam!
Yes, Rene put up many of your blog entries and I read a number of them. I had always meant to comment but there was always some emergency with the pregnancy or, of course, the insanity that happened after my son was born.
I suppose I write for me as much as you write for you. But I wonder how many depressing things people want to read about in a row. We just had a miserable, miserable May and I was planning on writing something but it’s essentially the same thing again – another emergency, another stay in the hospital, another bit of insanity.
So I do what you do, I write a bit of it down and think that maybe I’ll write more about it later. In that sense, writing was, and is still, my therapy.
Sometimes, though, I just want to stop thinking about all these miserable things in my life.
Thanks so much for writing, Sam. I do appreciate it. And I agree, we must triumph, somehow.
LL
Logan, my heart once again goes out to you. It has to be so tough going through all of this. I think of you and Alison often, and always hope the best for you both. If I can do anything else to help you guys, please let me know.