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

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Wednesday, September 2, 2015

Even Less Sugar: You can't keep sewing up a torn tarp.


Thursday morning, Ian will have yet another surgery. This (plastic) surgery procedure is to cover the incision site; currently the opening where the three lines meet on his head has been allowing spinal fluid to leak out and air to leak in, has not healed completely/properly/quickly enough, and is a potential source of infection. WE CAN'T HAVE THAT AGAIN.

So this is the LESS invasive option

They will make a very large, arced incision along the scalp. They will then PICK UP ALL THAT SKIN AND SHIFT IT COUNTER-CLOCKWISE AND PUT IT BACK DOWN. (Think of a secret decoder ring ... turning the top part on its axis). They will then have an open area (the shorted side) where they will graft skin from his THIGH. He will then have donor skin grafted to THAT spot. (I tried to find you some kind of picture or diagram to explain this, but I nearly hurled in the hunting so I stopped. I don't recommend Googling scalp surgery of any kind. Blerg.) *  Skin from his thigh will likely do well in the side opening left by the "scalp shift;" it should attach to that growing stuff and do its thing. 

The reason to do things THIS way is to fully cover the incision site with a sheet of skin already connected to a blood source: ie, the scalp is alive (with the sound of music) and will therefore re-attach and grow normally. (A skin graft over top of the whole site is not an option.) The good news is, the plastic surgeon has done many of these operations before, with good success. They happen often, actually. 

The bad news is that the tissue beneath the wound has been irradiated; it is dead and dying. That's a "good" thing for killing cancer, but a bad thing for wound healing. And the skin itself is delicate and damaged from the now THREE repeated incisions (2006 resection, June's biopsy and July's clean-out). 

As they open him up, they will be able to see the extent of the CSF leak. It's possible they will take muscle from the fascia of his cheek and use that to sew closed where the leak is happening (take a minute to digest the complexity of this stuff. Holy crap).

It's also possible they will need to remove the bone flap they didn't have to remove during the last operation; neurosurgery will make that determination after opening things up. If that occurs, it will make the plastic surgeon's work smoother (literally), but it will also mean Ian will need to wear a helmet for a while to protect the then exposed brain. **

After the surgery we'll know more, in terms of what of the above options were necessary, and what to look for in healing and recovery. There will likely be one or more drains in his head/face, and possibly a shunt. You can probably Google that without losing your lunch. 

He was much better Tuesday than he was Saturday. His tremor was nearly gone at lunch time, but it was back by dinner.  He spilled food all over himself and didn't realize it. He didn't initiate conversation, but he did understand and respond. The only thing he said on his own initiative Tuesday was, "I'm sorry I can't do stuff." But his cognition is better. As per his last CT scan (he gets one every morning), he has less air in the brain. But it's still there ... and I'm hoping it has a lot to do with the tremor and "off" nature. He's not walking well, either -- a heavy lean and very short shuffles. 

He doesn't remember the bowling ball cake. He doesn't remember that the kids were in to see him. He doesn't remember the staff on the floor coming in to sing Happy Birthday. Who knows how aware he really is of this coming surgery, but I'm sure if he were fully aware he'd say, "Sure, go for it. It's just skin," or something equally snarky. 

I miss my Ian. His body is there, but there's this terrible not-there-ness to him that is so hard to take. It was like this in 2011, I keep reminding myself; he relearned to walk and talk and eat. He can overcome this air in the brain thing and move forward.

Tomorrow: forward motion. 

* If this surgery does not "take," there is a more difficult and complex surgery as Plan B. Let's not get to Plan B, okay?

** Basically till he's healed back up, and then an option is to go BACK in and replace the bone piece with a chunk of something synthetic. ANOTHER head surgery with the potential for infection and CSF and air? but also ... no helmet. Anyway, we're not there yet, so let's not worry about Plan A.2, okay?

Sunday, August 30, 2015

Even Less Sugar: Happy Flipping Birthday

I try to be positive.   

Sometimes it's really hard. 

Yesterday was one of those times.

I haven't been to the hospital in several days; I needed to get the house in order and the kids started at school. I needed to act as CEO of Maize, Inc. and create some routine and stability. And I did so.

But Audrey's stomach problems got worse, causing a panic attack at the bus stop and subsequent melt-down at the school when it was time to go to class... for a kid who LOVES school, seeing her sobbing in the office, begging me to take her home, the watching her wipe tears from her eyes and hugging her backpack as the principal gently led her to her classroom ... ripped my heart out.

She's my stuffer. That went to her stomach. Not a surprise. She's been in self-protection mode; she avoids Ian at home and really doesn't want to hear about him in his absence. She doesn't ask. 

Ezra still has his "issues" that make school challenging for him; he's antsy, tappy, hummy, clicky, sniffy, bored and a bit passive-aggressive. I got a teacher call on the second day of school.

He commented yesterday to all of us in the hospital room: "I'd rather you not die at the hospital. At home at least."

So it was a hard thing, visiting Ian. But it was his birthday. And it'd been a few weeks since the kids had seen him at all. 

I arrived with trepidation. Audrey had already been combating anxiety on the trip. Now we were surrounded by the unfamiliar and scary and cold. This is a world that has become common to me: not so, for my kids. Look at her: she's terrified. She can't pretend this isn't happening. She can't run away and she can't insulate. 

We entered the room. Ian was lying mostly prone, awake, but listless. His face did not light up at the sight of his wife or kids. He didn't speak first. His face was puffy. His skin was pale. His head wound is healing! But his speech was very slow. He's clearly tired... But this is a different tired. I've been thinking about how to describe it for two days, and all I can think is:

The demeanor of an elderly person you might visit in a nursing home, who may or may not recognize you or care that you're there to visit. Distant. Depressed. Vacant. Confused, but not even aware of the confusion.

I'm not saying he IS any of these things. It's just how he appears to me. He's been in the hospital more than a week, and I think I'd fooled myself into thinking that would mean steady forward progress. In fact, he's most certainly "worse" than he was when we arrived with his leaking head. 

The staff came in and sang happy birthday. We presented the cake we brought in. He ate cake dutifully, persevering through a significant and frustrating tremor: his one good hand shakes to a startling degree.

We stayed a few awkward and uncomfortable hours. Audrey had to leave the room as Ezra said pointedly: "What's going on with the tumor? Wow, he's really shaking now! Why does he have to lie flat? What does the tube do? Is he going to die here?" When she returned she did a typical "Rachel thing": curled up in a ball to sleep. She never made eye contact with him. She just can't. 

I get that.

Happy Birthday, Ian. Can we vow to not have next year's celebration in a hospital?

Sunday, August 23, 2015

Even Less Sugar: Hon, I Think My Head Is Leaking 2.0: It goes to ELEVEN

Yesterday's bed-side lumbar drain was unsuccessful; the low level of fluid made that hard to determine, but as of today the fountain re-sprouted from his head. Tomorrow they need to re-do the drain, using a guided process via sedation plus x-ray/radiology/photon torpedoes. No one is at the hospital today to do it. (Naturally.)

I keep reminding myself that they didn't have us go directly to the ER when the leak started. So that must mean we should all remain calm, right?



Even Less Sugar: Hon, I Think My Brain Is Leaking: 1.0

Dripping Water is kinda fun; it makes that "ploop" sound. *  

         It's a catchy song on a Chumbawumba album: Drip Drip Drip

It's verse in Proverbs that made us giggle when we met at New Wilmington Missionary Conference in 1994. Proverbs 19:13b: A nagging wife is like water going drip-drip-drip. (GNT)

It is NOT, however, something you want to come from your husband's HEAD.

At home.  At 9pm.

Sure enough, there was a little "sweat" spot on his pillow as he sat up from resting.

"Can you look at my head? It feels wet."  A wave of nausea washes over me as I recall our last episode.

The incision site is damp, the skin discolored, right at the joint. Right over the missing bone piece, where it split last time. I don gloves and dab the area with gauze.

Clear. Doesn't look open, or infected, just wet.

Is this how the infection started last time, but we didn't notice it? What if this is fluid under the scalp that is going to erupt? What if this is the tumor pushing up on the brain and shoving liquid out? What if this is "normal" for head wounds? What the heck?!

  • Call the home health nurse line.

   "My husband's head is leaking from the incision site. He does not have a fever, he is alert and has no other symptoms. No headache, The liquid is clear and odorless."
   "We can get a nurse to you tomorrow morning. In the meantime, call the surgeon and see what they have to say."
   "When can the nurse be here?"
   "They usually make their calls around 8 to let you know when they're coming."

  • Call surgeon's answering service, wait for a call back. Replenish "Oh-Sh*% Bag"

ring ring ... "How much is it leaking?" (How the hell do I quantify an amount of liquid on a pillow? The speed of liquid flow? I AM NOT A MEDICAL PROFESSIONAL.)

   "Uh, I don't know ... it made a baseball-sized wet spot on the pillow." [typical questions to assess whether infection is present]
   "Well, I would say if it soaks three gauze pads over night, you should get him to us right away. It could be spinal fluid or another infection. Or any fever or chills or neurological changes. If not we'll see him at his appointment Monday."

I'm not kidding. That's the way that phone call ended.

  • Tape down a square of gauze. At Ian's demand, take a sleep aid and go to bed.
  • Wake at 6:30a, when a neighbor decides to do some motorized lawn care. I reach over and touch the gauze. Soaked. He gets up to use the bathroom. I touch his pillow. Cold. Soaked. I remove the bandage. The site looks "normal" and dry.
We go about our morning, waiting on the 8a phone call. Ian feels good, and is preparing to have breakfast with a friend. I give him his antibiotic injection. My dad arrives on his way to work. His breakfast date arrives. I haven't heard yet, so I call the home health line again.

   "I was just wondering when someone can come and look at my husband's head."
   "Did you call the doctor last night? And what did he say? We can put him on the schedule for tomorrow ..."
   "No, m'am, if the doctor told you to keep an eye on it and he has no other symptoms, you can do that and we can send someone out tomorrow."

Was I supposed to call them back last night, after I talked to the doctor? Did they REALLY not think I wanted a call in the morning from a nurse who could come and evaluate him? How could that NOT have been conveyed? 

So now here we are, the four of us, sitting in the living room, wondering what to do. Ian's stomach is growling. We've all looked at the incision site, which is not separated but slightly damp. Do I cover it to prevent infection? Does covering it harbor bacteria? What if the gauze sticks to the skin? I should protect it if he's going to leave the house. Should he leave the house?

  • I put out a txt to all my nurse friends for advice. I take a picture of the incision. 
Ian decides he will forgo the bandage and go to breakfast; if he's going to have to go to the hospital, he might as well get a meal in first, he determines, and he feels fine. I give my hesitant approval and instruct his friend to go DIRECTLY to the ER if "anything bad" happen at the restaurant [I list all of the possibilities and transfer medical authority to a fellow church member and relatively new friend. Poor sap].

He stands up to put on his shoes, and the faucet returns; the drips are running down his bald head onto his ear. ["Give me something to take with me to catch the drips," he says.] We all take another look. Friend calls surgeon friend of his. We're now leaning heavily toward the "Cerebral Spinal Fluid" diagnosis, which albeit not life-threatening in itself does not bode well for a brain surgery patient with recent infection and an unhealed head wound.

Off to the (local) ER.

They swab to culture the liquid, they do a CT scan. They call the "big" hospital and are instructed to send him there.

We wait. And wait. It's now close to 4p, when he should receive his next antibiotic injection. I inform the nurse. She doesn't have a record of the medication in his chart, so she needs to know what it is. I can remember the name, but not the dosage. I have her call the medicine delivery service, which is affiliated with the home health care company.


I have no car at the hospital, or I'd have driven down and gotten the stuff myself. I'd have a friend do that, but we have to be all sterile and careful with syringes and whatnot and I don't want to put that responsibility on someone else ... it's stressful enough for me to do it, hoping I didn't contaminate something unwittingly. So I do the only thing I can think of: I have a friend go take a picture of the bag of syringes in the fridge, with the dosage info. I show that to the nurse, meds are ordered and given. Done.

Only two hours later and we're off to the hospital in town. (Yup, we spent 10 hours at the local ER. It would have done us no good to travel to the "big" hospital on our own, as our wait was for a bed there. We would have just waited THERE for 10 hours, with the added bonus possibility of something going horribly wrong on our commute to the hospital, with I-AM-STILL-NOT-A-DOCTOR-Rachel at the wheel.)

Even at the hospital, nothing is to be done until the morning. But at least now we've confirmed that the leak is, indeed, CSF, and Saturday they will put in a drain elsewhere to divert the flow.

*My bathroom faucet is leaking. It's annoying. But I'll take an leaking bathtub fixture to a leaking brain any day.

Thursday, August 20, 2015

Even Less Sugar: Quietly Waiting

Things are quiet around here.

The kids are at Camp Kesem, and, by the pictures, seem to be having a marvelous time. They SO needed this, after the lousy summer we've had.

Ian is on week two of antibiotic treatments. (4 syringes, 3 times a day, for 6 weeks: This is mostly via Nurse Rachel, although Nurse Craig has blessed us by easing my workload. Thanks, Craig!) The steroids, which we're tapering, cause a great deal of heartburn and re-flux discomfort. Other than that, he's tired and tires easily. We try to get in some short walks, and he goes on food-based outings from time to time ... but we have to limit his activity to one event per day, as he spends a while napping to recuperate.

Rachel is depressed. Not the "of course you're down in the dumps, all this stuff is going on and you're run down and worried" "woe is me" kind of depressed....

This is "I've done this before where I go into crisis mode and kick hospital butt, then I go into the daily maintenance reality, and all of the feels come to get me at once, resulting in not wanting to get out of bed." This is clinical depression, back from the shadows to say, "Hello."

I was expecting this, so although it's disappointing and annoying, it's not catching me off guard. I'm working on my daily care plan ... basically I have to force myself to do things. But only a few things, and reward myself for doing them. And nap -- just not to the exclusion of all else. I've been here before; when the dust settles, and the long haul begins, there is no fight/flight energy. There is a vacuum (dig: I'm not using the non-metaphorical vacuum because of the metaphorical one. Ha.).

Yes, I know this is to be expected.
No, I don't need to "just get out of the house."
Yes, I am seeing a therapist.
No, I am not suicidal.
Yes, I am on medication.
No, I am not interested in oils or supplements.
Yes, I know I need to:

  • connect with others
  • exercise
  • eat right
  • get plenty of sleep
  • pursue hobbies
  • pursue relaxation

We're waiting

for the kids to come home
for school to start
for eight hours between antibiotic doses
for the antibiotic cycle to be over
to find out if we've beat the infection
for doctor appointments
for the wound to close tightly
for the chemo treatments to start again
for the next MRI to tell us what's going on in that brain
for a miracle

Tuesday, August 11, 2015

Even Less Sugar: Homecoming Hesitations

Ian is coming home tomorrow!!


Ok, don't take that the wrong way. I miss him, I miss having him at home and not in an hospital bed an hour away. Of course it's better for the patient to be at home, in familiar surroundings, surrounded by family and hopefully fewer sick people! 

And yet, there is something very ominous about my return to the role of caregiver.

When he's in the hospital, he's not on my watch. He's being carefully monitored and scanned and medicated. 

When he's home ... it's all me. 

We start with the mid-night or super-early morning bathroom trip: 

'Is he okay?' 'Is he staggering more than normal?'

"Are you okay, hon?"

Sometimes I fall back to sleep, sometimes I just try desperately to shun reality by putzing with my phone to fill the thought-wrought hours of the early morning. Then the sun comes up and the day begins in earnest. 

Is he okay? Is that new? Should I help him with that? When did he eat last? What meds did he just take? Is he staggering? slurring? feverish? nauseous? dehydrated? Can he get his own breakfast this morning or do I need to make it for him? Can I trust him on the stairs? How's the incision site? 

All this before I'm vertical.

It's stressful.

When you give birth, you go from doctors and nurses on duty, to guided care to, "Off you go with your newborn! Godspeed!"  POW: go do this parenting thing on your own. 

This is kinda like that. 

Sure, I've managed to keep my kids alive ... but last week Ian had a brain infection. 

Apples and Orangutans.

Saturday, August 8, 2015

Even Less Sugar: Brainwashed

We have experienced a significant setback.

On Thursday we headed into the ER; Ian had two episodes of loss of balance (although his balance has been generally altered since 2011, and even a bit more since the June biopsy, this was a new type of balance issue, and on his left instead of right side).

CT scan/MRI revealed a big problem: A LOT of infectious goo, IN the brain. 

When Ian had his biopsy in June, it was to determine the genetic make-up of the growing tumor. Advances in medicine -- even since his first tumor was removed in 2006 -- have allowed for more pin-point treatment of certain genetic mutations in cells. The biopsy was to reveal if this was an option for us (result: it's not).

Following the biopsy we began chemo and radiation. A month into treatment, a follow-up scan showed significant swelling, and possible tumor GROWTH, or at least no reduction. The doctors then prescribed Avastin to combat the swelling - it's an IV chemotherapy treatment. 

Unfortunatey one of the side effects of Avastin is wound-healing inhibition. It was a risk the doctors felt we had to take, given his presenting symptoms and agressive nature of the tumor. Most of the incision site was healed and sealed. There was just this one spot ... 

Remember that your skin is your largest organ, and that bacteria hangs out there on a perfectly healthy person ... you're pretty much a bacteria farm. Washing not withstanding, bacteria lives. 

In our case, bacteria from the skin made a beeline into the brain. It pretty much had a straight shot, following the channel of the biopsy incision right on in. 

When we arrived at the ER, infection had gone deep, puddled and spread. Ian had a fever, chills, and a raging headache. The previously calm-looking spot on his head begane to leak puss.

No option: the surgeons opened the site back up, removed a small piece of bone, pulled out the globs of infection, and - yes, in fact, for real: rinsed out the brain till it was "clean." 

You can't get all of the infection this way -like all things in the brain, there is a lot you can't see because you can't do a lot of digging. So that's where the antiobiotics come in. 

Ian will be on a steady dose of iv antiobiotics for the foreseeable future. The goal is to irradicate the infection, while carefully allowing the wound to heal. 

But here's the real problem: He's had a round of Avastin. It prohibits healing. He's had an infection, which negatively affects white blood counts. Both of these facts mean that our treatment of an agressive tumor is on hold. As the doctor said yesterday, "this is very unfortunatel timing."

Ian feels well - his headache is gone, with only the surface pain of the surgery causing any discomfort. He's in good spirits; visitors and indulgent foods arrive regularly. From the outside, he looks great. On the inside ... we've yet begun the fight.