Even Less Sugar: The Bad News

I've procrastinated writing this post. I wanted the bright light of Ian's ordination ceremony and celebration to shine over us. For a little while, we could celebrate a triumph of faith, will and spirit.

And we did.

Now it's time for the other shoe to drop:

Two days before Ordination, we got the news:

The reason for Ian's deficit in cognition, memory and balance is that his tumor, which had previously been identified as a Grade 3 Ananplastic Astrocytoma, has morphed into "Grade 4 Glioblastoma-like" behavior* (as in, they believe it to now be the latter, but without biopsy, which we will not endure again, it's not an official diagnosis).

The temozolomide regimen --which he was only able to undergo after clearing the infection and subsequent leaks and shunts and surgeries -- is no longer effective.

The doctors have recommended a new regimen of avastin and an immunotherapy drug called nivolumab. They are both administered via IV, bi-weekly.


Okay, that's the cancer stuff, but how IS Rev. Maize?

Since his initial injection, he's had a few gastrointestinal side effects and his appetite and awake time have decreased significantly (a few days ago, he woke only for his morning and night pills. He refused food and slept ALL day).

When he's awake he's pleasant. He can sometimes carry on a bit of conversation, but often his word-finding or confusion makes it difficult. He's able to get to the bathroom and into his wheelchair, but is unsteady on his feet and because a fall would be fatal (he's back on the drug which inhibits wound healing, which has the potential to lead to infection, not to mention delay tumor treatment).

The other day I crawled into the hospital bed to snuggle and chat. We talked about recent goings-on, news about people we know. I talked about his ordination. I showed him photos.

He remembers none of it. None.

Not a spark, not an "oh yeah" look of recognition. He was amazed at the number of people who attended. I described the meal and the closing off of the street and named as many attendees as I could from memory. Tears ran from his eyes. He was so, so deeply sad to have no memory of the event. I asked him if he wanted to watch the video, but he shook his head. It was too much for him.

We are living in a strange reality - a mostly-sleeping man lies in a hospital bed in the living room, with life lived around him. The kids carry on about their lives, but their mom sleeps on the couch and isn't "present" for them as much as she'd like to be. We try to do fun things, get to appointments, stay connected. But it's difficult. I'm not able to leave him for more than a few minutes alone (even to a different floor) because he's confused enough he will try to get himself out of bed, even though the "gates" are up. It does no good to remind him of that, or to tell him to call for me before he tries to get up ... he doesn't remember the instruction. (I use "Nanny Cams" for this reason.)

It's a waiting game, now, again. We can only hope the current regimen has success and the tumor recedes. If it does, will any of these ill effects go with it? We have no idea.

And so, my friends - pray for us. That the tumor shrinks, that the every day is bearable, that the agencies and organizations that can offer us help are able to do so. And for our hearts. It's already been a long road and we have no way of knowing how long it will be.




* Typical median survival for anaplastic astrocytoma is 2–3 years. Secondary progression to glioblastoma multiforme is common. Radiation, younger age, female sex, treatment after 2000, and surgery were associated with improved survival in AA patients.

~~For a very good explanation of brain tumors, and Ian's type (s), treatment, and other insights, read over this brochure from the American Brain Tumor Association.

American Brain Tumor Association