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.

Even Less Sugar: #3: Raw

Warning: this is an unedited stream of consciousness I wrote in the hospital a few weeks ago. This is real and honest and yucky. Fears and thoughts and what-ifs. Because this is probably universal. Our maybe you wonder what's going through my head about all this. Here's a peek. 

So much to say, but where do I start?

Fears: Ian's dumbs don't dissapate

His enlarged blind spot keeps him from driving. How does one do hospital visits without being able to drive? Does that mean the end of his formal ministry? What about reading books and watching movies and fiddling with the interwebs? These have become much of his awake life. 

On Friday they say, I'm sorry, this is a grade IV situation, and the only thing we can do is keep you comfotable. Update your will and hug your kids. 

We need to do invasive or intense chemo. It drains him and he ends up being frustrated with is own lack of energy. This in turn troubles the children (see most of the above as well)

He becomes prone to seizures/the dumbs because of this and other future treatments to the brain. Where does it end?

If none of this is curative, when is enough enough? When does the treatment endanger him or exacerbate things to an unacceptable level?

What do I DO without a husband? How does that look? I'm okay with forever caretaker ... but widow? Can't brain that.

Truth: I've imagined widowhood for YEARS. Some people might have fleeting scary thoughts about their kids getting into drugs, their loved ones being injured in war or getting hit by a bus - I have flashes of sad and lonely woman in her big house with her two cats, trying to keep herself together for the sake of her kids. Or deciding to stop mourning and be human again, only to meet resistence from folks who think "too soon, girl, too soon."

Realizing I'm nearing 40. When these things happened almost ten years ago, and I had the same thoughts, the future was in 5 years ... now that it's been 9, the future is ... This math isn't making sense, but let me try to put it this way - at 28, 40 was a LONG way off, and I may have considered a "decent life lived." Now that it's around the bend, I feel like I'm/we're just getting started with this whole marriage/family/life thing, and 60 would be a good life lived. I'm sure this is universal (teens think 30 is super old!) but in this context ... things are out of whack.

I'm not afraid to ask for help. I have learned to accept help and gifts graciously, I hope. I'm not worried about surviving financially or even physcially. Not spiritually, although I'm sure there will be bumps. But emotionally? How to BE. This thing - as it rolls, when it ends ... how to BE.

Cancer is not just the thing eating away at the person you love. It's the ball of yuk that comes along with.

Even Less Sugar #2: If you need ANYTHING ...

Please refer to THIS post for my standard disclaimer for this series.

We are truly blessed by an amazing family, a tight neighborhood, a sacrificial church body, and a large network of new and old friends. I reflect often on how anyone could possibly manage to survive without even ONE of these people groups; but the truth is, many must. Please take a moment to consider this and pray that your eyes are always open to those in need around you.

When disaster strikes (and it has, now multiple times for our family), people near and far spring into action. Some spring into prayer, some spring into contact: "We don't really know each other, but know that I'm praying for you and if there's anything I can do from Slicklizzard, Alabama, please let me know!"

And some yearn to help in tangible, practical ways:

• "Please let me know if there's anything you need." 

• "I'm home on Mondays and Fridays - if you need to have someone watch the kids for you, I'm available."

• "We're on vacation until the 5th, but after that we're here for whatever you need." 

• "I love to do handyman work. Call me if you need something fixed!"

• "Can I take you out for coffee?"

Being overwhelmed with available help is a good problem to have. Again, I am not decrying anyone's offers; I'm merely pointing out ways by which we can better help those in need.

1. I don't know WHAT I need. I've been through our current situation (albeit under slightly different circumstances) before. So, I have a little bit of experience navigating how it looks taking care of two kids and a husband with balance, dexterity and cognitive issues. I know that I will go-go-go-GO and then CRASH. I know that I will need the house to myself every now and then. I know that I will forget, or be unable to eat, often.

          The last time Ian had brain surgery (one should never have to write that sentence, btw), someone offered to do my laundry. This is not something I would have even considered as a need, nor would I have ever ASKED someone to do this routine, semi-personal task. "If I can't even do my laundry, I'm in big trouble!" I might have thought. Still, here was someone with a specific offer: "I am available, I enjoy doing laundry, and I would like to relieve you of that burden." And so, amazingly, I accepted the offer. And it was a blessing. It was one less thing on my plate, of course, but I can't fully explain the feeling of kindness that washes over you when someone has lovingly folded your gutchies. Truth.  

My point here is this: I wouldn't have asked someone to do my laundry. If someone had been to my house and noticed that the dishes needed to be washed, he/she probably would have done them without asking. But to offer to meet this nearly invisible but nonetheless essential need -- I didn't know how blessed I would be by this simple thing.

My advice: 

• Offer to do something you are good at doing and enjoy doing. I like to write. I can come over and write notes or emails or Facebook posts or thank you notes. I can "interview" you to get a timeline of things in case you need that in writing somehow. I can fill out forms. I'm not a big cook, I don't dig on kids much (I'm available in a pinch, and I'm always willing to do it, it's just not my thing), but I actually find cleaning soothing (when it's not my own home) and I'm excellent at finding items in stores or online. I schedule just about everything, so if you have a routine appointment or need (take out the trash Thursday nights), I'm on it. These things may seem small, but they all add up, and PEOPLE WANT TO HELP. Let them. 

• Be specific. If I've told you "I really like to deep clean a fridge," and you just spilled the orange juice in there, who ya gonna call? Sound ridiculous? It's not. It's really, really not. 

• Put it IN WRITING. You say, "If you need anything, just ask!" and you probably mean it. The thing is, I'm not going to call you about "ANYTHING." An offer in passing is not something I'm going to remember nor hold someone to, even if they meant it earnestly. If you send a card and offer to do a thing, put that offer and your contact info RIGHT ON THE CARD. Or a little note you put in with the food. Even if you make the offer in person, put it in writing. Yes, I probably have your info in my phone or in the church directory. Yes, this might seem awkward (we should SO return to using calling cards!). But what's a few extra pen strokes to you? I stash that note in my bag and now I don't have to remember who offered to take the kids to the park. Note: please include your last name as well - depending on the amount of help offered, there can be several "Bill's."

• Be (a little) pushy. For many cultural reasons, we're conditioned to both shy away from asking for, as well as actually accepting, help (see an upcoming post entitled Accepting Help for Dummies). When someone responds, "That's okay," he or she may actually mean, "I wouldn't want to trouble you," or "that would be great but I feel like an idiot for accepting that offer," or "Oh, no, I would never ask anyone to do that." My response: "You're NOT asking, I'm offering, and I wouldn't do so if I weren't 100% willing." So maybe reassure the person that you, in fact, really DESIRE to help and it would make you feel great to do so. ("No thank you," however, actually means, "No, but thank you.")

2.  I cannot keep track of all of the people who have expressed desire and willingness to help.  (see above: put it in writing) If I don't call you, it's not because I prefer to receive help from the same five people. It's because I didn't think of you because I can't remember who told me last Wednesday he liked to plant shrubbery and recycle cardboard. Also, see Facebook note below.

3. "I'm allergic to dogs, I can't cook, and I work 50 hours a week. I can pray, but what else can I do?" This may require some detective work. I'm going to give you a list of randomness, just to get you started. THIS IS NOT A MAIZE FAMILY WISH LIST. Seriously, this is not about us. This is for YOUR information. (Note: some of these things are "just do it" items, and some would require coordination and permission, naturally).

• Laundry! (and other household chores)
• Child care (Go get froyo. Movies. The park. Shopping for something - especially if you have kiddos yourself; this way it's not staring at one another in your child-free home, it's joining some friends for some fun. Kids know when they're being shuffled about.)
• Yard work
• Meals/food
• Patient care (can I sit with him for a few hours while he naps?)
• Caregiver care ("Can I take you to the movies and arrange for someone else to take care of the homefront?" / "Can I sit with him while he naps and YOU go out and do something?")
• Pet care
• Errands - recycling, dropping things off, picking things up
• Cleaning/organizing (home? office? car)
• Transportation (kids, patient, caregiver)
• Send a card. Send a package. Mail is awesome!
• Send emails or texts or posts or letters of inspiration
• Offer to take them to get groceries (and perhaps surprise them by paying for them?)
• Lend/give a novel you love
• Give a random, silly toy
• Give a random, silly magazine
• Find out somewhere they're headed or a prior commitment and cover the bill (someone did that for me in 20011 at the hair salon, and it was a crying moment for me. It happened again this year, at the orthodontist. Tears.) *see below, regarding giving money
• Take the "patient" out to eat or get them otherwise out of the house (this is good for both patient AND caregiver)
• Post ridiculous cat videos to her Facebook page
• Post just about anything with a turtle in it to her Facebook page (ok, so those last two are kinda about me, lol)
• Pool your efforts and resources to serve in some way (form a cleaning crew or a massage/hair cut/nails kind of thing, or tackle a home repair project)
• Gift the kids (but don't go overboard).
• What hobbies do they have? What foods do they love? Troll around for preferences (Facebook is another good avenue for sleuthing in this area) by asking around. 
• Send them: "I'm at 'X', can I bring you a 'Z?'" text messages. (Reason: I'm not going to ask you to GO for Target for me, even if I need something. But if you're already there ...).

There are just a few ideas, and obviously you'll want to consider the situation. A new baby is different emotionally than a broken leg. A constant stream of folks visiting to squeeze the baby may mean "please bring us food so I don't have to cook for my cousins who are only here to see the baby but clearly not wash dishes" and a person experiencing depression may need space, or a listening ear, or a night out, or all three.

Regarding gift cards, cash and checks: 

      People are weird about money. Talking about it, giving it, accepting it, using it, not using it, etc. So let me just put this out there: You are not "throwing money" at a situation by offering it. You are not taking the "easy way out" of helping, nor are you insinuating something about the person/family's financial situation. Everything that relieves a burden relieves a burden. Cash may go toward gas for making hospital trips, paying the newspaper subscription, a new blouse for a woman feeling very blah, or perhaps toward something that's already in process, like, say, paying for a basement floor to be poured, the beginning of which was started before any thought of an impending bad situation existed. In my case, a kind friend (who knows that I buy most things, including toilet paper and cat litter from amazon.com) gifted me $25 amazon credit. I used it toward a wheeled laptop table because with all of the coordinating and communicating and writing I'm doing, I needed something portable but stable to serve as home base. Is a laptop table 1. something I'd ask for? 2. something essential to the home? 3. something I'd consider important in light of a potentially life-threatening disease? Nope. I probably would not have ordered it were it not for the "permission" by way of a few dollars from my friend. 

A note about Facbeook: 
   I have a separate post coming about Facebook ... and really I've had the post percolating for many years. The website is one of my closest, dearest friends -- because most of my actual friends "live" there. I'll save the Facebook love for another day, but I'll say this: social media allows for a cadre of support like none other. It allows people overwhelmed with life and circumstance to get the word out to everyone quickly and accurately, preventing rumors, allowing targeted prayer and help, and just keeping connected to a world outside one's own difficulties. It also makes it easy to make a need known, if you can bring yourself to post it. It lets people show their care and support within seconds of receiving an update.