Even Less Sugar: At the Hospital. And That's a Good Thing

So just a little update on things in Rev land:

We had an appointment scheduled for Monday (for MRI and chemotherapy treatment at the Cancer Center). Based on a few less-than-stellar braining days, I was concerned about transport to the clinic. After consulting with staff, we determined the best thing was to skip the line, as it were, and head on in to be seen. NOT for an emergent issue, but rather a two-bird-killing exercise. 

I sent out a plea to facebook: please, help me get him into my car, so I can take him directly and not rely on an ambulance (and therefore also go via the emergency room, etc) or call a van service, to be arranged via the ever-so-unhelpful-and-late-to-the-party VA. POOF: six people showed up, carried his wheelchair down the steps to the front walk, loaded him into the car and waved us on. 

Our oncologist went ahead with the chemotherapy treatment and admitted us to the hospital for the MRI. This meant observation/hospitalization which I'm not shy to admit meant some rest for Rachel. I stayed across the street at the Family House (such an awesome place) without worrying about Ian (much). Apparently he was confused overnight (of course!) but was otherwise in fine spirits when I came in this moring.

The MRI shows NO NEW GROWTH. Stable. We'll take it! It's only been two prior treatments, so that's encouraging news. Of course it's not "wow, it's gotten smaller!" news, but ... we take what we can get. 

Next Steps: Ian will remain (as one doc here put it) in Hotel Shadyside for a few days. He's had PT and OT and Speech therapy (after a fashion) and will continue to receive them while here. He will then be discharged to a facility close to home for a little in-patient rehab therapy. For how long? Who knows.

What's next? 

Who knows.

The point is: we're at the hospital, and as much as that might seem like another awful incarceration, Ian doesn't much care, I get a bit of respite from being on call 24/7, and we have a (short) path forward. 

I can't remotely forsee what the next weeks and months and years? look like, but what I DO know is that I have an amazing network of people who are itching to help. You have loved on us so much ... I am overwhelmed regularly with your generosity and love. Oh how I long to reciprocate. 

Since I've gotten messages and phone calls about ways to help, I will do my best to come up with things for those from afar and a-near. With summer coming, I anticipate needing to find someone to taxi and/or occupy the kiddos, if I'm to be at home. If Ian is home and in a state to be trusted alone with "regular folks,"* I may need a cardre of watchers so I can get myself to karate, a haircut, whatever. And the ever-present meal needs remain (why do these people have to eat EVERY day?).

Thank you for past, current and future kindnesses. I'll be in touch.

* LOTS of you have offered to "come sit with Ian" while I get out. Here is why I haven't called you: Currently my only real need for care in my absence is getting him to the bathroom, or to use a urinal. These are not things I would expect of a family friend (they include more intimacy and odor than you'd want), and on a BAD braining day would be quite dangerous (think 6'1", 230# crashing down). I can't be farther away than it takes to make it back to address a bowel movement, so me "getting out" is not a reality. Them's just the facts, y'all.

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

A Pound of Sugar: The "Rev" Gets Ordained

When Ian was a pilot in the Navy, his call sign was "Rev."

It's a "thing" in the military ... pilots ... call signs (remember Goose and Maverick?).

He was far from a chaplain, but he did love to engage in theological discussion and debate in the ready room. Thus the moniker. (I'm told there were several other unofficial names, but we'll leave those out for the sake of the guilty :) )

Anyway, fast forward 8+ years since those ready-room days and Ian "Rev" Maize became Rev. Ian Maize.

Photo credits for the gorgeous photos below.

After a beautiful service, 400+ went out to the street for a huge picnic with music, dancing and much love and congratulations. Friends and family traveled far. We are blessed and so thankful. It's been a long journey to this point and we couldn't have done it without you.

You can view the service at HERE

(scroll down in the lower box to "Ian Maize Ordination")