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Wednesday, June 8, 2016

Even Less Sugar: The Post We All Knew Was Coming

How do I write this post? Is there a gentler way to say we have reached the end of things?

Ian's last appointment showed no tumor growth ... however it also confirmed what the doctor suspected; the immunotherapy drug has had no affect on the tumor, and Avastin, the anti-swelling drug, is all that is keeping it at bay.

"And tumors figure out Avastin rather quickly."

Quickly, as in months.

So there it is: we have months.

We will continue to receive MRIs/treatments every two weeks, as Ian's able to tolerate the travel and desires to do so. At some point those treatments will not be beneficial, either, but I think we do them as long as we can. 

When the tumor starts to ignore the Avastin, decline will take weeks. There will be further cognitive and mobility decrease, but not necessarily any pain (at some point one would think the pressure would cause pain, but I'm unclear on that).

Yesterday was a decent cognitive day for us ... which meant a good talk, although it meant a substantive talk, as I have to take the opportunity when it arises to talk about important things ... and so it was a tearful talk. We went over the past year, as he remembers none of it. I showed him pictures on the phone that went along with events, both in and out of hospitals. Goat, I read your fb post following the reunion dinner; he said thank you many times and wept.

Monday there was a (no kidding) murder on our street. It was quite the distraction from the reality of our situation. All the commotion and excitement gave the kids some breathing room after I sat them down and discussed our coming weeks and months. 


I am tired.

But we press on ... this is not "news," even in its finality. Ian does not fear death and awaits meeting his Savior. He's just a little sad.

What can you do?

* Check in on us. If you've "been meaning to visit," do it soon
* Shepherd the kids. Please treat them like NORMAL KIDS plus a little tenderness. You don't need to "be sure they know you know" or are available to listen - they know Mom gets the word out and most people know. Don't ask about their dad. You can ask about summer plans, school in general, books, legos ... You can say, "how are YOU doing?" and give a glance ... But then let it drop. You don't have to "watch what you say" but if you could avoid talking about cancer or funerals or that type of thing, that'd be super.
* Fill needs as they arise, when you can (rides for the kids when I can't leave are most needed over the summer, and distractions for them as well, especially when things go "bad").
* Sometimes I need to blow off steam. Sometimes I do the ostrich thing, sometimes I do the sleep all day thing. Sometimes I really need some funny. (Really, I can almost always use some funny.) I know you don't know what to say. That's okay. Say it anyway - I promise nothing will be wrong. You can't help you don't know what I'm going through, and I wouldn't want you to. Just don't be silent for want of what to say.

If you want to contribute tangibly, I think I singlehandedly keep in business .... we can always uses GCs to that and Giant Eagle. We don't get out much, so GCs to local restaurants aren't of much use right now, and people are generous with providing us meals. Special porch treat surprises are always a beautiful hug for the day, as are flowers, now that they're blooming. Cards are MAIL! which is always good.

Be kind to one another. Small kindnesses and smiles. Keep perspective, in Ian's honor, about what matters, who matters, how you can show love to your fellow man. Hug your kids, smell the flowers, breathe the cool air. Ian would not want you to be sad for him, he would want you to wrap your arms around us and keep us afloat, and to pour out God's love to one another.

Wednesday, June 1, 2016

Even Less Sugar: Running Out of Respite

Hello, friends.

For the past two weeks, Ian has been working hard at rehab. This stint has looked different than others, as he has had some decline in ability and mobility, but still he has made measurable progress in some areas. 

I don't want to focus on the deficits other than to say: he doesn't walk, he transfers. He doesn't use his right arm/hand, but he can eat just fine with his left 😃 .

The biggest issue is, and will likely always be, his inonsistent braining. Yes, he has declined in this area overall, but its very unpredictable nature has made this quite the experience in navigation. 

Example: his physical fatigue is easily correlated to time of day and activity. Late in the day, don't ask him to stand much. Ok- good, we can work with that. 

But right out of the gate, in the morning, we have a 50/50 chance that his brain will be talking to his limbs. Is he able to follow directions ("move your right foot," "now sit down")? or are we going to struggle with each direction ("Your spoon, hon. Use your SPOON."  And if that's the case, (and this is important), how will things be in an hour?? 

In other words, we're up and down, day to day, as well as within the day. I say things like "good braining day," but that's oversimplifying this web of confusion we live in. 

On Sunday he will return home. He's anxious to do so; hospitals are lonely, and I think maybe much more so for someone who is frequently confused and/or has little short-term memory. (Not knowing what time of day it is, what day it is, who was in to visit, etc). 

Back at the house, I have people helping me getting things more Rev-Ready. An outside ramp is in the works, in-home therapy will begin, and we're still working on that stair glide and shower ... 

In short ... the hard work will begin again, in the home setting. I'm going to call on those who have offered to help so we can maintain sanity and maybe squeeze some normal into our days, at least for the kids' sake. 

(Caregiving burnout is a very real thing.)

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.


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.