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

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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.

Tuesday, December 22, 2015

Even Less Sugar: Gosh, I'm a Slacker!

Ok - so I finally came back to the blog to notice: WOAH! According to this, we're still in the hospital. Oopsie.

Here's the current scoop: We have been home for a few weeks. Ian is still on antibiotics, but there is currently no sign of infection. We will hopefully discontinue them in a week or so. Yay!

Physically he is stronger ... getting moving again. He has abandoned the walker and prefers to teeter along on his own. I still like to flank him because of balance concerns, but he has been known to trek to the bathroom and back without an escort. Progress. We've made it to church two Sundays in a row.

Mentally, cognitively, it's an uphill battle with some valleys. (In that metaphor, the valleys are a GOOD thing - less resistance.) Anyway, his occupational and speech therapists primarily work with him on sequencing events, naming, memory items ... that sort of thing. Last week it was REALLY a struggle to count money. An analog clock made no sense (think teaching a child what "a quarter past" means). This week the money thing went more smoothly; he could brain the values AND the adding. Yay! He can still only name about five animals, but those seem to come a little more quickly, so we'll call that progress.

Next on the agenda: tumor battle. No one can say definitively if his current cognitive issues are from the multitude of brain-poking that's been going on these last 6 months, or from the tumor itself (which is in the visual/language processing area). It's possible CSF pools, goo pools, infection pools, pressure (pools?), tissue swellage and downright jostling could account for some of the mental deficit. It could also be that undetectable, microscopic growth is causing problems. So once the antibiotics wraps up and we're satisfied the new shunt is functioning adequately, it's time for chemo again.

HE IS HOME AT CHRISTMAS, which is a present in itself.

I want to thank everyone who has given to us this season, in the hopes that we are able enjoy a precious Christmas. Every single item and monetary gift has been prayed over and treasured and hopefully put to good use. This will not be/has not been an excuse to lavish the kids with unnecessary things, and we won't make the over-compensating mistake, but it's been a relief to know that yes, we can go ahead and get those much-desired items. There will be unwrapping, cinnamon rolls, and laughter. And you've all been a big part of that.

As far as Nurse Rachel goes, I look forward to hanging up the scrubs. I prefer Wife. I have imagined many blog posts but have not written them (including one where I describe all the things I do in a day, to put in writing and validate that I am, in fact, busy ... but I was too busy to actually write it. How meta.), but please know that we are here, we have peace, and we are ready for our next adventure. This is the long haul part of illness ... the in-between crises time span. Aside from the Christmas festivities, we are open to visits and occasional field trips. Please keep us in mind if you are so inclined! :)

Merry Christmas and much love.

Sunday, December 6, 2015

You Keep Using That Word: Caregiver Blog Party

A lot of us are care-givers.

Parents of young children are obvious examples of caregivers: responsible for someone who has little to no ability to care for himself.

Pet owners are also caregivers: making sure Fido has his nibblets and walkies and shelter, etc.

Nurses, therapists, counselors, hospice workers ... now we're getting into paid occupations of caring for the sick or injured.

Family Caregiver is a unique role: caring for a family member with chronic illness, disability or injury. We didn't train for this service, and despite our intense love for our carees, it can be confusing at best and traumatic at worst to attend to their emotional, physical and spiritual needs 24/7.

This week, check out my fellow bloggers from Caregiving.com, my digital home for coping with the challenges I face in this season of life. We're a merry band of misfits, venting, asking, sharing, and cheering one another on. Perhaps you have reason to join us - please feel welcome to do so.

Holiday Progressive Blog Party

Monday, November 30, 2015

Even Less Sugar: It's Time For a Game of "What's That Goo" (and other tv shows that are my life right now)

Answers: "The plot thickens," and "I've never seen this before."

Question: What are "things you never want to hear from your brain surgeon following surgery?"

Last week, our medical team concluded that Ian's shunt was not working properly. This is not an uncommon occurrence in shunts, and they are frequently adjusted, replaced, etc. Not particularly worrisome to them, although obviously disconcerting and inconvenient for us. (Have I mentioned before how un-cool it is when Ian can't brain? I'd rather evacuate his bowels for him than watch him try and fail to come up with the street he lives on. This is not hyperbole.)

At first, they were contemplating starting at the bottom, drain section of the shunt to determine the site of the blockage. Gook in the drain? replace that part, but leave the brain part alone.

However as we got closer to the procedure, the surgeon decided it was better to replace the whole thing, assuming that if there was a clog (basically proteins in the csf/blood attach themselves) in the drain, there was likely to be detritus on the brain end. And heck, while we're in there, let's get a darned good look at this "pooling goo" we think could be infection or maybe it's not. So with a teeny-tiny camera, the doctor poked around to see what he could see in the ventricles.

Dr. A was able to extract a sample of the "stuff," which he described as "cottony, white, puss-like stuff," that was unlike anything he'd seen before (this is too simple a retelling, as he went on to describe how he HAS seen stuff LIKE this, but it's been in fairly disease-ridden patients who are symptomatic of infection and metastases). Still, the statement remains: he'd never seen this before. He CALLED a guy fellow brain surgeon. During surgery. He sent a sample off to the lab. When the results came back "no infection," he WALKED a sample down to the lab to watch them test it himself (all of this shenanigans meant surgery took much longer than we'd expected, and we were concerned when they called us to say they were in the midst of this pathology stuff when we'd expected him to be sewn up and in recovery from a shunt replacement procedure). Still: no infection detected.

So we're back to Goo Theory: the stuff that's up there, clinging to the ventricles and the old shunt, is detritus. It's goo. It's puss, scab, whatever-material, but it's not infection and as far as we can tell, ALSO not tumor.

Ian got another small brain wash, and the surgeons installed an external drain (see previous posts - we had one, we faced the possibility of having one long-term, etc.). They chose this route so we could be ABSOLUTELY CERTAIN that no infection remains before installing new hardware. As in all infection testing, even with initial negatives, things could grow later on; so the goal is to be a comfortable distance from surgery to be confident nothing is alive up there and growing or able to grow, say, once we discontinue antibiotics.

So it was back to the ICU; when that Cheers guy sang about wanting to go where everybody knows your name, I DON'T think he meant rolling into the Neuro ICU and having the nurses all shout, "Ian!" ... but that's kinda how it is up there for us. They're glad to see us, but of course don't want to see us. And the feeling is mutual.

Today, after several days of the external drain, he'll have a new shunt placed. Then we'll have some recovery from that, and close monitoring of his cognitive state: we've experienced Ian's brain on high pressure, and it's not good.

We COULD be discharged as early as Wednesday, however at this point, with surgery so late in the day, I'm guessing more like Friday.

So: Who Wants To Be a Brain Surgeon? Not this girl.
Who Wants To Be a Nurse? Not me, but I can do it if pressed.
Who Wants To Get This Infection Stuff Behind Us So We Can Kick Cancer's Butt Again?

ALL OF US.