Month: February 2017, On (or Close to) Schedule

There’s no way out but through

We ended up getting our second treatment this last Monday. Took three times longer than we had expected but I was thrilled to be there.

Looks like we’re back on track. For now, at least.

I spoke to a cancer researcher last week too. He said that Alison was the longest lived butterfly glioma patient he’s ever heard of. It’s a dubious distinction, and still not enough for us.

On that note, had numerous friends and relatives ask if she can get a break: Can’t she just have a few months without swallowing 30 pills a day, without having needles stuck in her every week, without wearing a helmet of magnets 24/7, without inhaling an astringent four times a day?

The short answer is no.

Because they don’t become friends with other glioblastoma patients and caregivers. They don’t have to hear: We put David in hospice this week. Jessica had three new tumors on her last scan. Maddie passed away today.

It’s tough to hear because you hope everyone else can pull through. You hope your loved one can pull through.

But the truth is a powerful thing. The truth is, most people are dead from this damn thing within 18 months. And most of those people are people that can walk and use their arms. People that had 100% of their cancer removed. People that went to the best cancer centers in the world.

Most people start off far better than Alison and still died.

If there’s any way at all for her to survive this, it’s because she doesn’t stop until the job is done.

It’s like that old Robert Frost poem:

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

No one goes 12,000 miles if they can go 30 unless they feel they have no other choice.

We don’t have a choice. No one with a glioblastoma really does. There’s no way out but through.

Some college friends of mine are throwing Alison a fundraiser dinner at Nickel & Dinner on March 2nd, 2017.

So if you’re hungry and in the NYC area looking for a bite a eat, hopefully you can stop by. Ask for Kathy or Ricky, two dear friends of mine.

As for us, we’d love to go. But we can’t, cause we have monsters to fight.

‘

Location: Home again
Mood: cautiously hopeful
Music: say honestly you won’t give up on me, and I shall believe

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Waiting for the next island

Her: I’m tired of being sick and in pain. What’s the point? To live a few more days?
Me: To stay alive for one more year.

For the past few months, Alison’s been on three treatments to fight this damn thing. Last Monday, we lost all three treatments.

One treatment is called Optune and involves an array of magnets that she wears on her head 24/7. It sounds crazy but was just approved in October 2015 to fight her type of cancer.
The second is an experimental treatment that’s not approved for her cancer but it’s similar to the treatment that President Carter used. We just started it last week because of her new growth.
The third is a highly experimental treatment that’s not approved for any cancer but passed Phase 1 and 2 clinical trials in Brazil. I managed to find a supplier to agree to get me some.

The first two we lost because our insurance changed. The third we lost because FDA rules changed.

It was a difficult Monday, to say the least. Yet, in some ways, Alison seemed relieved. She was tired. Tired of the struggle. Tired of the pain. And I couldn’t blame her.

But later on in the week, Optune told us to appeal the decision and if we did that, they would let us continue to use the device for a fraction of the $21,000 per month it costs (you read that right). So we got that back.

Then our doctor called the insurance company and asked for a waiver for the second treatment. He called us late in the week to come in for another infusion because it had been approved. I’ll update this entry this week if it happens. So that’s back too.

Finally, a young woman I had been corresponding with about the third treatment told me that her husband wasn’t doing well. So she was going to send me two months of the drug. It just arrived.

More on that in another entry as it deserves more than such a brief mention here.

So I told Alison that all I wanted was for her to make another year. Because we didn’t know what the future holds. On Monday, all seemed lost. By Friday, we were back in business.

And, like I said, Optune was just approved October 2015. Who knows what will happen October 2017? We just have to go a little farther.

Me: Remember that story I told you about the 12,000 miles? We just have to keep going until we see another island. I’m just asking you to hang on for a little while longer.
Her: I’m so tired.
Me: Just a little while longer. I’ll be with you the whole time.

My gym sent her those flowers above.

It was the perfect cheery thing for an otherwise un-cheery week.

\’

Location: still adrift, but with new supplies
Mood: conflicted
Music: Beautiful girl (stay with me). She wanna go home

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