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

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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, 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?


Friday, November 20, 2015

Even Less Sugar: Home Care, Therapy, and Back to the Hopsital

The problem with being a good communicator and a constant updater is that when you don't update people go ... "Hello? What's the word?"

To be quite honest, I've spent most of the last few weeks asleep on the couch, razed only for meals and medication times. Exhaustion -- depression -- whatever. I can't concentrate long enough to write an email, let alone a blog post, especially with the nebulous and fractured information I have to work with.

His occupational therapist was happy with his progress enough to discontinue this week. His speech therapist was working with him, carefully helping him navigate word finding and memory issues. His physical therapist was getting him MUCH stronger than he had been in the hospital – he was able to walk to the bathroom (downstairs) on his own from his hospital bed in the living room. We made tandem treks upstairs to shower.

However, starting a few days ago, he had bouts of confusion – nothing monumental but still different and less cognition. Two days ago things went downhill quickly as he was basically talking nonsense, repeating that nonsense over and over ("I need to put the windows in order"), and unable to follow direction (to lie down in his bed, for instance, did not make sense to him. He couldn't understand what I was saying, and he didn't know how to do it when he did). He also threw up – all signs of something bad going on in his brain. We headed to the hospital.

Yesterday (the day after admission through the ER the night before), doctors tapped his shunt to test the cerebral spinal fluid for infection. They've seen what they consider to be possibly infection on MRIs – but it also could be other things. It is not tumor material; the current areas of concern are not where the tumor is at this point. Despite being on antibiotics for four? months, the infection? or whatever it is, has not been eliminated.

The initial results were extremely low white blood count which is a good thing. The 24 hour turnaround is also favorable. There will be another check at 48 hours. They've changed one of his antibiotics to something else. Trial and error? Possibly.

The issue then, is: What is causing the (current) problem? What's that area(s) we see on the films? The options seem to be 1. intracranial pressure (i.e. swelling and fluid presence and the brain's ability inability to go back to normal size as a result of all of the trauma, or infection, or both; or 2. infection which has not been eradicated by the antibiotics, or is new and different than the one we've treated with them before, or detritus from breakdown of dead tissue and basically a pool of scabs (you're welcome).

If there is infection ON the shunt, the doctor says it will not respond to antibiotics; it will have to come out, with an external drain to replace it. Complications: possible increased/different infection introduced, healing time and potential for infection as a result of THAT process, and the external drain would be an indefinite fix ... a (VERY) gradual process of changing the speed/volume of the drain until pressure is stable and a shunt can be reinstalled. This could mean a year-long hospital stay, no joke, which has its own complications, namely EXPOSURE TO INFECTION AT THE HOSPITAL.

Also on the table would be another brain washing as before. This carries its own potential serious risks i.e. another brain surgery skin healing etc. infection etc. etc. Also mentioned has been a direct injection of antibiotics to the brain, however that has its limitations as well. I think this is kind of like three rocks and three hard places.

I came into the hospital room today to a bright, sunny room, Ian sitting up in a regular/lounge chair, eating his breakfast, smiling. At some point later on, he started to say odd things and make less sense.* I decided that we needed to talk while he still had the capacity to understand and communicate ... about these options, and what he thought about doing the most aggressive things vs. a more conservative approach, were we given the choice and he was at his current mental ability. That conversation will remain private, but it did involve tears.

Tonight doctors installed a lumbar drain, as they've done before, to lessen the excess pressure on the brain. We've had varying degrees of success with these in the past, so I'm not holding out much hope, but we'll wait and see... Unbelievably, because of this wait-and-see stance, they're talking about sending him home by Monday.

He's being volleyed back to me, to determine if things go awry enough to head back to the hospital. Oh joy.

* 1. He shouted "RELAY" into the hallway, to/at no one, because he said "there's a kid out there who isn't supposed to be there."

2. Because a nurse was reading menu options to a patient to choose from, he told me they were having a buffet out there and he wondered why?"

3. He wriggled his feet and meowed because he was playing with the cat, who he argued with me about actually being there.

4. When PT gave him directions, he agreed and then did something completely different ... and even when he seemed to hear and understand, he wasn't able to get his body to cooperate.

-- Trust me, there are rationalizations that can be made for some of these things, but that first one? NO WIGGLE ROOM. He's not right. He's not tired, he's confused.

--- "He seems okay to me," is something you'd likely say if you saw him ... the man uses $5 words. He has a manner about him that exudes confidence and health. But HIS BRAIN IS BEING SQUEEZED SO BIZARRE STUFF COMES OUT OF HIS MOUTH. Just because he describes something using "multitude" and "numerous" and "exceeding" doesn't mean he's not telling you about credit cards and rain coats ?!? (which he did, tonight).

Wednesday, November 4, 2015

Even Less Sugar: back to that rock and hard place thing

Ian has had two appointments this week, including an MRI.

According to the pictures, he has EITHER a significant infection (still) in his brain OR the tumor has grown.

Here's the problem: the only way to monitor the infection and the tumor is visually via MRI. On contrast film TUMOR MATERIAL AND INFECTION LOOK THE SAME. We can't treat the tumor unless we're confident the infection is taken care of (and I don't know to what degree - 100% or "mostly percent" - fuzzy and vague). But we don't know what part of the blob is infection and what part is tumor.

So treatment remains the same: heavy antibiotics, monitoring blood counts, vitals, home health care and therapy, and WAIT.... *

For the infection to quell? for the tumor to swell? for the snow to fall ....

The doctor (Dr. Snazzy Stethoscope) said treating this thing is "an ART."  Not a science. Yeesh.

Fuzzy. Guessing. Trying. Waiting.

He also said Ian was an inspiration.

I tend to agree.

*(also blood clots and high blood pressure and tremor and weakness and confusion and dis-coordination and headache)

Sunday, November 1, 2015

Seven Weeks Till Christmas?!

If you happen to need some Christmas gifts, a dear friend has set up this vendor sale to benefit our family.  Wine, Women and Fundraising Vendor Show.