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"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

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Thursday, May 19, 2016

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.

Monday, May 2, 2016

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.





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")

Monday, April 11, 2016

Even Less Sugar: All Healed Up and Nowhere To Go

It's amazing, the human body.

After that impressive gash, Ian's head is down to one small stitch hiding under a scab but is otherwise healed up. No infection has appeared to plague us, so we're in the clear from the fall.

In other news, I've gone back to work, part-time. They called, kinda out of the blue, and I surprised myself by immediately responding "yes"; I guess that means I need some kind of distraction/peopling/work/thing. My boss and team are completely supportive and flexible and I couldn't ask for a better environment. While I'm out, a good friend comes to the house to look after Ian and "hold down the fort" (ie, clean the toilets). God bless her.

KIAI!

Also in the, "wow, you're actually doing that?" category ... I've begun to take karate classes. Because:

  • I took a Facebook quiz that said I should (no, seriously, this is the reason I even considered it)
  • The kids take it, too, and I'm familiar with the studio/people
  • The studio is two minutes from work, where I had decided to return only moments before taking the above "quiz"
  • I need to be doing something active... for physical AND mental health (I've gained 20 lbs since June/ I get to hit stuff)



On Sunday, Ian will be ordained as a minister in Evangelical Presbyterian Church. The ceremony and celebration will happen at our home church, where he was hired in June as an Assistant Pastor. It's been a long journey from Navy pilot to brain tumor patient to logistics manager to brain bleed patient to seminarian to (assistant) pastor to brain tumor/brain infection/blood clot/shut fail/CSF leak patient to ordained pastor ...


And what happens now?



None of us has any idea. (and really, none of YOU do, either, you just THINK you do. Keep that in mind.)


How IS Ian? Here are some facts:


  • He sleeps a LOT. I would say he's awake about three hours a day, unless he has an outing.
  • Those waking hours are spent eating, listening to books on CD, sometimes watching television with me and the kids -- not much else he's able to do.
  • He is on a monthly chemo cycle (one week on, three/four weeks off), which increases the tiredness.
  • His mobility is not great; I have noticed a slight decline in strength and balance and coordination. But we still do the stairs twice a day to bed and back.
  • His cognition is .... our biggest problem.

Would it embarrass him to for me to tell you we have pictures of clothing on his drawers, so he can 1. remember that clothing can be found in them, 2. remember where to find each item, 3. remember why he's standing half-naked in his bedroom, confused, wondering why he's cold?

That he often tries to put his pants onto his arms? That when I correct him and tell him that no, they go onto his feet, he lifts his arms for me to help put them there again? (I have to tap his foot to get him to lift it and not his hand.) 

That flushing a toilet doesn't make sense to him? (He knows something should be done, but he'll stare at the handle and call me to help him because he can't figure out how to do it.)

That he ate a cupcake with the wrapper still on

He can't dial a phone. He doesn't brush his teeth (without prompting, and even then, I need to load the brush). He doesn't care to shower (I'm in charge of when that happens). He would never remember to take his medicine (which he's been taking every morning and night for 10 years). 

When he's "in a good place" cognitively, he can carry on a conversation with only slight gaps in flow. He can listen to and understand books, television, people talking ...

But sometimes he'll try and try to answer a direction question, and nothing that comes out makes sense. 

And he's aware of that.

And it sucks.

As you can imagine, taking care of a grown man in these ways while parenting, maintaining the home, and wearing all my other hats has been exhausting and trying. This week, Ian's mom graciously agreed to take Ian to her home for a change of scenery for him and pace for me. I was burning out. I needed the respite. 

This Friday is our next MRI. We will discuss with the doctor all the regular stuff (has the tumor grown? how is he tolerating chemo? what about his decline in cognition?*). It's also possible we will be exploring alternative treatment centers, out of state. 

Please pray for us as we navigate the every-changing new normal, and make wise decisions regarding his care and our path as a family.




*All these things can cause cognitive deficit: swelling, tumor, radiation (ie, dead and continued dying tissue from radiation treatment), chemotherapy affects, shunt failure/pressure.

Monday, March 14, 2016

Even Less Sugar: Head Smashed In, Can I Help You?

Well hello, again, from the sprawling complex of Shadyside hospital, in downtown Pittsburgh.

Yesterday, I was having a bad morning. I had a week to prepare for, and felt super behind; laundry was piling up, the fridge was bare, all the paperwork ... oh, and some other things are brewing, but that's another post for another day ... 

Anyway, after getting us all to church (where Ian gave a prayer during service), I decided to reach out to friends and see if they would host my family for a few hours while I got my head on straight and my house somewhat in order. The last thing I needed was constant interruption to derail my energy and train of thoughts, and the last thing THEY needed was Angry Mommy, barking orders and insisting they go play in traffic. I know I make it sound like they're a torrent of needs, and that is far from true. Still, I was in such a crabby mood ....

Our friends were available! and graciously accepted my three for an afternoon of movies and munchies.

I got a Mocha at Starbucks and headed home. 

I should have known when I immediately flipped the coffee upside-down in the car it was going to be a terrible, horrible, no good, very bad day.  

I went in the house and grabbed a tablet of large paper and a fat marker. I made a page for the day and started to scrawl my to-dos, vowing to make the most of my day of energy and silence. I had about 30 items down, to do or delegate, when the phone rang.







"What's up, hon?"

"Well, Ian fell. He's okay, but he's bleeding, so you better come over."

"Where is he bleeding from?"

"His head."

My apologies to the residents of Beaver, PA, as I believe I broke a land-speed record to get those five blocks. Stop signs were ignored.

I arrived to see a pleasant-enough Ian sitting calmly on the stairs, blood splattered on his clothing, with a towel being held to his head. My kids were merrily watching the movie on the other side of the room. 

The towel was removed.

I am not a weak person. I do not have a weak stomach, and the sight of blood and head wounds obviously doesn't phase me much.

However, in that moment, pretty much the entire weight of the past 9? months of surgeries and infections came crashing down. 

The ONE thing he couldn't do - fall and hit his head - had been done. And right along the old incision site was a brand-new, deep wound.

WARNING: wound picture at the bottom of this post. 

So it was ambulance and vitals and arrangements for the kids and circling around to the house for the OSB (see post to follow) and off to the local ER. He had a CT scan, which showed "a spot" they felt COULD be blood, so they wanted to keep him overnight, staple his head, and observe him to be sure the spot wasn't active bleeding. 

They called his team in Pittsburgh, and as we can safely assume will always be the case, they wanted to see him in person. So it was another chariot ride to the city.

Of course, all of this took hours, and I'm sparing you the painful waiting.... and waiting... and waiting... (you're welcome).

At the new ER, doctors contacted Ian's neurosurgeon, who happened to be on call. He was able to evaluate and do the sewing up himself. The scans, upon review, didn't show anything NEW; over-cautiousness is never a bad thing, and thankfully it meant a reassuring visit from the "Main Guy" who himself stitched things up. 

Dr. A said that conditions were "not ideal," both in the amount of time the wound was exposed and the facilities in which he was forced to do the sewing, but that the wound itself looked good and because this time we aren't on extra chemo, wound healing should go more quickly.

So at around midnight we ended up in a suite on Floor 6 - waving hello to everyone there who knows us well. I went across the street to "sleep" at the Family House.

Today they say he'll probably head home. I won't ever hold them to that, but since it's a sew-up and wait-to-heal situation, it's at least possible. 

Antibiotics will be the rule of the day, to prevent OHMYGODINFECTIONAGAIN and we'll of course be in wound-care mode. But otherwise ... he's fine, we're fine ... just keeping things exciting around here. 



THIS IS YOUR FINAL WARNING. IT'S NOT PRETTY.
























Thursday, February 25, 2016

Even Less Sugar: Plugging Along

It's been over a month since my last update here. Oops.

As of Ian's last MRI, the tumor seems to be stable. There COULD be a small decrease in size, but these things are minute and fluid, so we're not hanging any hats on that notion yet.



This was really, REALLY difficult, and took
us about 30 minutes. The directions had to be
explained a few times (after "reading" them
himself he started writing whatever that says
in red), and it didn't make sense to
connect the words to objects.
Sometimes we laugh, and sometimes ...
He is no longer taking antibiotics and has had his PICC line removed. Pills only! Yay! We said adieu to the hospital bed and he now sleeps upstairs. Our only remaining "help" is the shower chair, which we'll keep around for everyone's piece of mind.

We haven't quite settled into a routine yet, because last week was CHEMO WEEK! Yippeee!! and that meant a lot of sleeping.

Going forward, we will continue on an oral chemotherapy regimen of once a month, for five days, recheck via MRI, and ... it's back to the wait-and-see game.

He has finished all of his formal in-home therapies. I work with him to practice tasks dealing with memory, cognition, etc. This is some of the hardest work I've ever had to do; patiently going line by line in a child's activity book with my master's-degree-holding husband, as slowly as one teaches a child to read.



Sunday, January 10, 2016

Even Less Sugar: Tired and Sad: The Truth About Waiting and Hoping

I have been told, over and over again, that readers value my honesty. At times it feels as if that honesty is me whining about a particular situation, or complaining about the overall circumstance, but I have to remind myself that, no, in fact, you want the raw goods. And it's still good for me to get it out there. So here it goes:

We are both sad and tired.

For the last two days, I've awoken to my hero crying. CRYING. Not something he does (and not because of some false bravado ... just isn't a regular thing) much. Throughout all of this, we've had very few weepy moments -- mostly when we've done some hard talking about how to navigate life without him, whenever that may be.

For the past two days, Ian's expressed to me that he feels helpless. Like he doesn't know what the next step is (it's chemo, and it will arrive any day now). Like there are financial things he should be attending to and he's worried we're being overpaid by Social Security or somethingsomething and it stresses him out thinking we're going to be overdue on some account and also owe the government money we shouldn't have been getting.

He's sad about losing his wedding ring (although probably not as sad as I am ... I'm heartbroken and obsessed over a material symbol of our love and commitment. I know it's understandable, and also that it's a needless worry, but there it is).

He can't see much. He can't brain much/it's ridiculously hard to attempt to read and comprehend things .... for a normally voracious reader, this is a huge blow. Even watching movies is difficult, as it requires vision, plot comprehension, and not to be too overwhelmed by sight and sound.

He's sad that we're all sad ... that it is sometimes difficult to orchestrate interaction between him and the kids because it's just awkward. We've played a few games with them ... we STRUGGLED through Clue as a family, and Ian soldiered on, despite much confusion. Doing those things reminds him of what he's lost/missing, and that means it's bittersweet trying to interact with the kiddos.

I'm sad he's sad ... it's hard to witness. It's ... sad.

We're tired. He is exhausted after therapies, and after outings (which are all VERY GOOD for him and he needs to be out and about, stretching his extroverted self and exercising his mental muscles as much as his legs).

I'm tired ... I don't get a lot of sleep, and I have to stay up later than I'd like to give medication. I image that the sleep I do get isn't the best, either (this is not helped by the chronic pain I've had for a month).

I'm tired of being the Maize Family Coordinator, whose duties have expanded to include three therapists and a nurse, doctor appointments, pharmacy trips, phone consults with various agencies about all of the above, not to mention his social calendar (which is a GOOD thing. And it's not like he can do that himself. I'm just saying...).

All that is ... busy enough, but add on top "mom I need to make a diorama," "can you download this app so I can run my robot," "my lunch account is low," "can I go play with so and so," "do I HAVE to go to karate?" "you have a package at the post office," "are we going to church Sunday?" bathing Ian (which takes about an hour, all told, and includes shaving, which although I'm getting better at, is stressful for me), "it's time for your next dose of IV meds and a few pills," "please sign this form saying you've signed this form and fax it back to us tomorrow..."

I would LOVE to sit and read one of the many books on surviving trauma or cancer or suffering I've been gifted. I'm sure they'd be a comfort, or enlightening, or would provide an outlet for a good, hard cry. Or maybe I'd open up the paper and give a flying leap about some politician being an idiot. But I can't sit still for anything but sleep. My mind races so much with the things that need to be done that I look down and realize ... I've "read" a few pages I haven't even SEEN.

I sat Audrey on his bed the other day and we all chatted about how we need to be sure to spend time with one another -- even though it's weird and awkward and sometimes we just don't want to -- because we certainly don't want to look back and have regrets (yes, I went there with my 11-year-old. Carefully, so as not to make it about guilt. It still stung.). I asked her to try to think of ways we can involve him in our mundane, stupid stuff, so he doesn't feel left out and sad he's missing everything.

Assuming the ring is gone forever, do I get a replacement? Do I get a replica (that would be a challenge, as it was quite unique) or a new-fangled thing? And here I'm putting it in print: will it be as meaningful for the weary widow to clutch a ring she purchased a year ago to replace the one of 16 years? What's the point? But there IS a point. I just don't know what it is. And it causes me a pang of sadness to look at his naked finger, which I can't keep myself from doing.

This is the daily, difficult reality of our situation. It's the calm between storms, when no colossal medical event is happening, and we're just trying to muddle through, getting through each day, hour by hour.

And it sucks.