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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, 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?

RIGHT???

Sigh.

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 ..."
   "I WAS UNDER THE IMPRESSION SOMEONE WAS GOING TO COME OUT THIS MORNING."
   "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.

THEY REFUSE TO TELL US THE DOSAGE.

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!!

Yippee.


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?"
"Mmmhmm."
"Okay."

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. 

Wednesday, July 29, 2015

Even Less Sugar: Telling the Kids

While the kids were at Gramma's during this past ordeal, we discussed how we might shed more light on Ian's situation with them. I read Helping Your Children Cope with Your Cancer and we discussed our desire to have them know as much as possible without overwhelming them. Perhaps giving them a few weeks to settle into their new lives and questions before they head to Camp Kesem, a camp for children of cancer patients/survivors/victims.

A few minutes after Gramma dropped them off:

Ezra: "So, dad, what's up with that tumor?"

Following: THE talk. We explained to the kids that Daddy could die in a year. Or less. Or more. We talked about medicine and tumors.

Ezra teared up a little and came to snuggle with me. Audrey kept building Legos. When Ian said "year," she looked hard at me. I made the "yup, that sucks" face back at her. She lowered her gaze and continued to build.

Ezra asked if there was a telephone booth in heaven. He also has a question about hell pending (he wouldn't ask because he didn't want to SAY "hell," but he said he'd ask tomorrow).

I said, okay, so this is really sad and it sucks. So let's talk about how we do things now.

Me: "My priority is that we 'Live Well.'" What do you think that means?

Ezra: "That we know that if Dad dies then he gets to party with Jesus and if he doesn't die then we can thank God."

Rachel: "And really every day is a blessing and a miracle and we can thank God EVERY day for the life we have and the love we have for one another."

We're going to do things we might have waited longer to do, but we're also not going to DO ALL THE THINGS. We're not going to go to Disney World and the Grand Canyon and all of everywhere because dad's sick. We're going to live as we normally do, and just do our best to love one another and be kind.

Ezra: "Like we're going to Uncle Eric's wedding."

"Yes. We're going to do the things we're able to do and not go crazy trying to do all kinds of things.

It's important that we love one another, that we love God, and that we show His love to others. That's really important to your Dad, and so we need to make that important to us.

All the grownups in your lives, and some of the kids, know our situation. You can feel free to talk to any of them about anything - even if it's something you don't feel like you can say to or ask Mom or Dad. You can even tell them things you WANT them to tell us, but can't tell us yourself.

I'd like to tell your teachers at school next year, so they are aware of what's going on."

Ezra: "So if we start crying they'll know why?"

Rachel: "Yes. Exactly."

--- conversation immediately breaks into Lego logistics. Exactly as it should be.---

There will be more conversations, more questions, more tears. If you love on my kids, be gentle, and allow them to speak. If they act out, I'm sorry ... show them grace, while still pointing out inappropriate behavior. Bad life circumstances are not a license for bad behavior.