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

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.

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. 

Unfortunately 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 aggressive 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 began 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 eradicate 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 unfortunate 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. 

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.

Even Less Sugar: The Truth About the Future

• Ian will die of brain cancer.
• I will be a widow.
• The children will lose their father.

These are the FACTS (barring being hit by a bus).

It's what we do with these facts that matters.

---------------------------------------------------------

This weekend we had to visit the hospital; Ian accidentally stopped taking one of his medications and thing went downhill quickly. Lots of swelling to lots of ill effect.

After an overnight on steroids, he's back to "normal."

And then we saw the oncologist.

The tumor, which is "cystic" (meaning like a jellyfish, not a golf ball), is still moving. Some of the movement COULD be due to all of the swelling happening up there. Some could be straight-out growth. It's nebulous and hard to measure, because as I said above, it's gooshy. We do know that it is aggressive. It's not in a place they can operate (it's too close to ventricles and such).

What I know is the doctor said things like, "extend your life as much as possible," and "keep you comfortable," and "I'm very worried."

Ian has started a treatment called Avastin which will lessen swelling. It's delivered by IV, every three weeks. He will also remain on Temodar, the pill-form chemotherapy, with 5 days on, 20 days off, etcetc.

Radiation treatment is over. The effects of THAT have not necessarily been realized, in terms of tumor shrinking ... and the radiation itself can cause swelling. So you can see ... SWELLING. Is an issue.

The doctor refuses to give a timeline here. He will tell us what treatment we'll do, and when, but won't give a prognosis. That's ok ... how would we hold him to it, long or short? but the point is, we don't know how much time we have.

None of us do, really.

It's just that for us, that time is less.

Even Less Sugar: What's Going On?

Things have been very busy in the Maize household. I realize that some people are a bit in the dark and await an update. My apologies. (Please note: I have a TON of things to say about ALL kinds of things and just haven't been able to bring myself to write it all down. There are gaps in this story I hope to fill, but I just can't do it right now).

Since my last post(s):

We were honored to be part of a prayer service at our church, where over 200 people gathered.

The kids both went to sleep-away camp: Ezra for one week, Audrey for two.

Ian's significant inability to communicate and think clearly has lessened SUBSTANTIALLY. He can carry on a conversation just fine now. PRAISE GOD.

He has done one round of chemotherapy (1 pill, every day for 5 days, at home) and his last radiation treatment is tomorrow (Wednesday). He has handled both very well, with no substantial side effects.

Our water main developed a leak, which turned into a torrent, resulting in a torn up street and no water for a day ... but that's in the process of being repaired. (currently the sidewalk is torn up and the street is soon to join it, and we're pilfering water from the neighbor for the interim).

My (maternal) grandfather, William F. Sheraw, passed away. The funeral service was difficult but beautiful, and we were all able to attend.

Ian has returned to work, at least in the mornings, for office work and hospital visits. He is unable to drive, and so receives rides to appointments. He considers this work both a duty and a privilege, and, in his words, it makes him feel somewhat useful.

I have also returned to work, in a part-time capacity. My employer is completely flexible and I'm able to work my schedule around Ian's and the kids'.

The kids are in a lull between camps and other scheduled activities, so they are mostly clamoring to play Minecraft and have friends over.

So that's what we're doing. How ARE we?

The Kids: They are as aware of the seriousness of the situation as they can possibly be at their respective ages. They are both "seeing" people to talk about their feelings, and are slated to attend a camp specifically for children of parents with cancer in August.

The Patient: Ian is tired a lot. He probably overdoes it with the visits and the food, but he also enjoys the company and the deliciousness. He experiences "moodiness" and is quicker to become irritated -- this is a result of a multitude of factors, the most likely culprit being the steroid he takes to keep swelling at bay.

As far as cognition goes, Ian's word-finding is SO much improved from when he returned home that I'm inclined to say it's "back to normal." However HE is aware of deficits, whether they be in word-retrieval, clarity of thought, or ability to follow conversation/activity. This lack, this mental hiccuping, distresses him to varying degrees. It's subtle to the outside observer, but to him ... I don't want to speak FOR him other than to say I believe it both makes him feel "less than" and worries him at the prospect of decline in this particular area. Losing the ability to think and communicate, to someone nearly complete with a post-graduate degree, freshly hired as a pastor who has been delivering sermons ...

The Wife/Mom/Caregiver:  It depends on the day. Truly. We're not doom and gloom here, but we're not naive. This is tough stuff. Sometimes I get to pretend and play ostrich, and other times I am struck with the full weight of the situation. At this stage, I will admit to focusing on the logistical issues of long-term preparedness and countering those with the day-to-day fluff that keeps us occupied. I don't meddle too much with the "what-if's" and the "are we spending quality time?!" stuff ... at least this week.

Which brings me to next week: 
Monday is our next MRI. I don't think I can possibly overstate the importance of this scan. Unlike all past others, we already KNOW something is there. We're praying that what we've done so far has had an effect.

There could be no change.
There could be shrinkage. (It's ok - you can smirk at the Seinfeld reference)
There could be growth.

All of these potentials have their own agony. We have no clear picture of any next steps.

We covet your prayers. We appreciate your thoughtfulness, support and friendship. And we wait.

Even Less Sugar: #3.5

... More from the hospital weeks ago...

I'm so thankful for all these people at the hospital doing their jobs.

I resent people who are laughing. Just a little. But I'm so glad people are happy and being themselves.

Facebook keeps me company.

I'm tired of being strong.

So many people have it so much worse.