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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, June 24, 2015

The News

I have to write this I have to write this I have to write this. So here it goes. 

We had our meeting with the oncologist today. Because of Ian's current symptoms (speech deficit, numbness, etc) he wanted to check for a stroke.  

He found zero evidence of a stroke. There IS some swelling. But what accounts for the current deficits is, in fact, tumor growth. This means that within the two weeks since the last MRI, the tumor has grown enough to cause this issue. It is large and on the move.

Preliminary pathology says we think this is still a grade III, not yet a gliobastoma (grade 4). But treatment is the same; based on the speed of growth, he will do chemo and radiation right away. Like- chemo tomorrow if the pills are in. 

The rest of the story: the only data we have on recurrence re-treatment is a 30% chance of shrinking /preventing continued growth within 6 months. 

If that sounds like an equation you can't decipher, it kinda is. So I'll put it this way: we have a 30% chance of postponing the inevitable and perhaps improving his current symptoms of not being able to talk. 

As I type those numbers, I'm fully aware that he has beaten SEVERAL odds. It's just that ... You didn't see the doctor's face. 

How can you help? I have no idea. We are planning to attack the tumor with all guns, believe God can do a miracle, and try to do life well with one another. But we are also getting affairs in order and trying to fathom preparing the kids. 

There will be rides to radiation needed, we will need outings for the kids, either to give us or THEM a break from this bleakness. 

Please don't avoid us. Please don't worry about not having words. There aren't any. We all want to see you. Come and visit. I won't pretend to care about trivial things, but sometimes they are good, needed distractions. I'm an introvert, but I don't want to be a hermit. You can maybe prevent that from happening. 

I'll try not to be shy about asking for help. But you can check in sometimes. I might not even know what I need. Random acts of kindness are always in style. And please don't take this the wrong way; I'm all full up on dessert. 

Friday, June 19, 2015

The Medical Stuff

1. In 2006 Ian was diagnosed with an Anaplastic Astrocytoma. If you google that, you'll note it is a primary brain tumor (meaning it orignates in the brain and does not travel away from it, nor does it come as a metastises from elsewhere in the body). The grade of an A.A. is III ; that's III out of IV. What that describes is agressive/speed of growth stuff. You may also note from the WikiPage that life expectancy hovers around 3-5 years, depending on age, size, how fast they caught it, modes of treatment and how recpetive the system is and how tolerant the patient is of treatment. 

As you know, Ian is alive. So - he responded very well to treatment. The tumor was removed (ressected in the medical world) and he underwent chemo and radiation. Radiation is what makes your hair fall out (think lasers) and chemo was by pill, on solid for a period of time and then on-again-off-again for aboout a year. 

At diagnosis, Ian was a pilot in the Navy. That no longer being an option, he medically retired and we moved to PA; assuming the worst, I'd be near family when he passed away from the Awful C Word. (oops, that's a little editorial)

Over the next 5 years, Ian had periodic MRIs. Because of the grade of the tumor, removal and treatment success aside, his condition was deemed "non curative". Basically all we were doing was postponing the eventual return of the tumor.

The MRIs were consistently clear. What started as an MRI every three months moved to four, then to six. Please note: every single one of these checks was a trauma to me. I don't think I need to expound on that. Still, we were grateful and encouraged by a continued clean bill of health. 

2. In 2011 the MRI showed something else, lurking elsewhere. Speculation on the cause of the brain stem bleed remain as murky as the cancer cause -- it could be a result of chemo/radiation, it could be the result of flying a radar plane ... it could be JUST. Doesn't matter, because in any case it showed up hard and made itself known. 

If you're reading this it's LIKELY you experienced this episode with us, but if not, the summary is that the bleed increased to a point where despite its tenuous location, Ian would no longer survive without surgical intervention. The result of THAT surgery was much more dramatic, as Ian had to relearn to eat, talk, and walk. Collateral damage remains: He has a speech deficit, numbness/ non-coodination on the right side of his body (blessing: he's left handed), and eye movement that is truly fascinating (I can't believe someone's eyes can do this much moving and not cause them to throw up or fall down. The brain/body is truly an amazing machine). 

After months of in- and out-patient therapy, Ian ditched the wheelchair and stomach feeding tube for chocolate cake and a 5K. No kidding. 

Subsequent MRIs showed the same empty spot where the tumor was, the same "absence of bleed" area on the brain stem, and tra-la-la now nine years out.

3. Unfortunately his June scan, which was at a six-month distance from the previous, showed a suspicious blob. This one is/was less defined than the original tumor, but adjacent. This was a good indicator that it was tumor regrowth, but also that it was not "operable" - meaning removal is impossible and illadvisable. While it may be true we "only use X% of our brains" for anything useful, we also can't go scooping large parts out and expect to function - especially from certain areas.

This brings us to today. We've had the biopsy. The doctor removed a bit of "cystic" material as well as some permiter material which we suspect of being the no-good-ness. And whereas the tumor was a golf-ball and the bleed was a tiny raspberry, this biopsy involved millimeters of material. This was not a removal, just a test. It involved re-cutting the original skin flap and going in through where the piece of the skull was removed in 2006. Sorry for the yukky stuff.

Prognostication at this point is futile. I will only say this: they told us many years ago this was likely. We have been blessed with many relatively healthy years, but we are not naive. I suppose we gained a bit of confidence every time the scan came back clear, but thankfully? we did not place our hope there. Cancer is a bastard. And it's back. 

One of the first things I thought as I readied my (already-packed) hospital bag was, "this is not our first rodeo." That's a phrase I don't think I've ever used before, yet we've heard it twice in the last two days by staff at the hospital. We must have that "brain surgery? meh." look about us (and when I say "we," I mean extended family as well). 

I have a terrified peace. I have a defeated hope. I have a resolute wavering. And I trust God to work all this out. And I hate all of it.

Thursday, July 31, 2014

Learning to Ride a Bike at 37 -- or -- Rachel is Obstinate

If you never learned this about me (it's a favorite response of mine in the "Three Truths and a Lie" party game), I never learned to ride a bike.

Yes, I'm 37 years old. No bike. 

The reasons are many. It all begins at childhood, but as all childhood memories, the tale has been created and repeated and mushed over time. I'm sure there is truth embedded, and lies as well. But it goes as such:

My mother will certainly confirm: I have always been obstinate. (bull-headed, stubborn, etcetc.) If it wasn't my idea, NOT interested. Even if I WANTED something to start with, if someone ELSE brought it up, nope! I'm out.

Can any moms relate?

Anyway, for the most part, my mom was able to manipulate this character trait while still "letting me be me." She must have been a wizard of reverse psychology and giving me a sense of independence - at least in the important things. Thanks, mom!

Anyway, in my neighborhood, the "big kids" had bikes, and the little kids had Big Wheels (go ahead and revel in the nostalgia for a moment. I'll wait. Did you flip yours over and pedal the wheels with your hand while someone whittled a stick? No? Just me? Ah, well.).

Here's where the memories get muddy, but in MY mind, one of the neighbor boys had a Superman bike I admired. Or maybe I just admired him, or marveled at the skill of riding a two-wheeler. Perhaps it was a combination of both. In my mind, the bike was iconic and sleek black, with a Superman logo. In actuality, if in fact any boy had a Superman bike at that time, it likely looked like this:

Bad-ass, right?

The chain of events are unclear; perhaps I mentioned that I liked his bike, or that I didn't HAVE a two-wheeler ... but I am quite certain I did not say, "I want a bike," and/or, "I want to learn to ride a big-kid bike." I know this, because when this beauty showed up, I was aloof:

Looking at it now, it's quite lovely. I remember my basket being white, but who knows?! at this point, I will admit to my memories being skewed.

I distinctly remember 1. disappointment at not having a Superman bike, even though I doubt that desire was even MENTIONED to my well-meaning parents. I can't believe they weren't mind readers!

2. bike assembled, beautiful day(s), parents suggesting I go out and give it a try. Perhaps even mentioning it for days or weeks, to my refusal. (see the "not my idea" section above).

3. when things do not come to me immediately, I toss them aside as either beyond me or stupid to begin with. I'd like to think I've outgrown this a bit, but I suppose you'd do well to ask Ian if he thinks this is the case.

4. at age 7, I moved from a neighborhood of side-by-side homes with grassy backyards and paved driveways to a country abode on a giant hill, surrounded by acres and acres of field, and a gravel driveway emptying onto a major highway. My feeble attempt at bike-learning was my mom's (read: tall!) road bike in the approximately 10 feet of cement garage floor. No surprise: fail. Had I actually learned, any bike riding would have been done via transporting said bike elsewhere to ride around in circles. Not high on anyone's list.

Fast forward many, MANY years. 

THIRTY, actually. 

I've lived in MANY locations amenable to bike riding. Neighborhoods with lots of flat. Having no bike or inclination to try again, coupled with terrifying attempts to rollerblade = never learned, didn't care to. I was okay with that.

We moved to Beaver, Pennsylvania. Our kids became "of that age," and we got them bikes. At that point, Ian was able to ride, and when my daughter learned in a day, they were able to go on little jaunts around the neighborhood. I wasn't jealous, exactly (let's face it ... laziness is also a factor here), but I will admit: a little ashamed. I watched Audrey, no fear, jump on a bike and GO. 

I must point out here, however, that it's a LONG WAY DOWN when you're a tall person. Just sayin'.

Then one day (again with this all-in-one-day thing? Witchcraft, I tell ya!), some friends made some kind of deal with my son - "learn to ride your bike without training wheels and we'll ______" (Ezra can't even remember what the carrot was). He did, they did. Done.

While strolling around town sometime later, I decided to visit the local bike shop. I had it in mind that because I did so much cruising around a five-block-max radius, I'd do well to use a bike. What if they sold three-wheelers? I could TOTALLY handle that. No balance, all effort!

Guy at shop: "You don't want one of those. They're a pain to ride. Hard work. Pretty expensive."

Me: "But I don't know how to RIDE a bike. I'z ascared."

Him: (with no smirk of incredulity, God bless him) "We'd be happy to teach you. I'm positive you can learn."

I looked at the bikes. I had romantic thoughts about cruising along, wind in my hair, free. Faster than walking! A bit of exercise! Less gas usage! 

That evening I announced to my husband: "I went to the bike shop today."


"Yes. I looked at the bikes. He told me I didn't want a three-wheel bike."

"No, you don't. They're hard to ride."

"That's what he said." End of conversation.

Skip ahead to my birthday, wherein my husband, who had heard the Legend of the Stubborn Rachel-Child, gifted me with a sleek, black bike. He also purchased a Superman decal to be affixed once I made the bike my own by LEARNING TO RIDE IT.

Now, dear friends, further insight into my brain:

This "maybe I would like to ride a bike idea" was DANGEROUSLY close to NOT BEING MY IDEA ANYMORE because someone ELSE had gone and bought a bike for ME to ride.

Seriously dangerous territory. Like I said: obstinate.

My husband, God bless him (and I believe I have mentioned before, quite the saint when it comes to navigating his wife's idiosyncrasies) SAID NOTHING. 

He may have off-handedly suggested, on a few occasions, that I give it a go.

I always had an excuse, or a face ready to flash him.

(To be fair, the year I got the bike, in November, it rained until it snowed. I'm not even kidding).

But that was three years ago.

I made an attempt once; an honest attempt. I was terrified and frustrated. The kids came along and whizzed around me. I left defeated. 

Then some things happened... I started to immerse myself in productivity, goal-setting and task-managing resources. I dove into making short-term and long-term goals. I have spent hours fussing with systems and methods. 

One of the lessons in this research has been setting BIG goals. Scary ones. Ones with deadlines and clear objectives. 

And so I said to myself, "what's a huge, nearly insurmountable goal I can tackle? How can I be accountable?"

And it was decided. By me. ON MY OWN TERMS: I shall ride my bike. To my church and back. By the end of July.

I added it to my calendar. I added it to my task-managing software. I posted it to facebook.

Poof! The end of July approacheth. (how DOES that happen so quickly?!) and wouldn't you know ... it was July 30th, and I hadn't gotten on the bike. At all.

So yesterday, July 30, I had exactly the right amount of "feel the fear and do it anyway," "you've got this," "fight for it," and "ain't nothin' gonna break-a-my-stride" running through my head that I sneaked up on MYSELF by not PLANNING at all and just DOING the thing.

I went out and rolled down a grassy hill.  Then some pavement. Then after significant sweating and fear and deathgrip, took to the street. 

I'm not there yet. I suck at sharp turns. I canNOT start myself going on an uphill. 

But this approaching-4-0 girl got on a bike. And rode.

And tonight, after I ride to the church for an event, I will affix that sticker.

Tuesday, April 22, 2014

Throwback Tuesday: a post from 2005

A Treatise on the Weather: I love the rain. And I prefer non-sunny days to sunny ones. Really the darker the better, but I'll take overcast over sunny. When I tell people this, they usually don't believe me, or think it's weird, but that's okay. I usually say, "if no one was happy on this kind of day, EVERYONE would be in a bad mood!" I am actually happier all day when it's gloomy outside (I call it an Eeyore day). But why? When did this happen?

Reason 1: I don't like to squint, or wear sunglasses.

Reason 2: I don't like to see all the dust in my house and in the air. Sunlight exposes every speck of the stuff. Bleh. It makes me sneeze just thinking about it.

Reason 3: I like the way rain looks on things - windows, pavement, leaves on the ground and in the trees, grass when it's gotten the chance to turn a bit green...

Reason 4: I like the way rain smells. The combination of everything wetted down, with the rare exception in some locations of, say, trash or something, is heavenly to my nostrils. I take a much bigger damp breath than a dry, sunny one.

Reason 5: I get to decide how bright to make it in the house - turn on lights or not, light a candle or not...

Reason 6: Some of my favorite songs are either about rain, or it plays a feature role in the story.  These are just a few off the top of my head!:

Rainy Day People (Gordon Lightfoot)
The Rainy Season (Marc Cohn)
Looking at the Rain (Gordon Lightfoot)
Storms (Fleetwood Mac)
Rain (Madonna)
Blame it on the Rain (Milli Vanilli)
Raindrops Keep Fallin' on My Head (BJ Thomas)
Singin' in the Rain (the musical)
Good Rain (Chris and Johnny/Storyhill)
Love a Rainy Night (Eddie Rabbit)
Driving My Life Away (Eddie Rabbit)
Bobby McGee (Janis or Gordon Lightfoot)
Ironic (Alanis Morrisset)
Rain Down (Phil Collins)
Tom's Diner (Suzanne Vega)
Early Morning Rain (Gordon Lightfoot)
Fire and Rain (James Taylor)

Seriously - that is just off the top of my head; I'm sure there are others?!

Umbrellas and raincoats make me laugh.  "Oh no!  I will get covered with something that will soon evaporate..."  I mean, it's not PUDDING for crying out loud!  Of course, I've never been an "oh no, my hair" type person, so I suppose if I'd spent even a few minutes stylin' and sprayin' in the am I wouldn't want that to be compromised.  Still, I laugh when I see people, with nothing to protect but their bodies, wearing raincoats or sportin' umbrellas.

*I think there is a distinct difference between love of rain and love of grey days.  I mixed the two.  I like my grey days without rain, too.  I suppose it goes: Rain, Grey, Partially Sunny, Sunny.  Fave to least.

Sunday, September 15, 2013

Ultimate Reset: Day 19: Random Thoughts

  • I roasted the veggies without burning them tonight. Success! (and I love roasted root veggies. beets! sweet potato! onion! carrots!  nom.) The kids ate them without complaint! Woot!
  • you, too, can eat half an avocado every single day and still lose/keep off weight. Healthy fats, people!  Also: nom.

  • My "cheats": 
  1. Dunno what day it was, but I did have a "that-time-of-the-month"-related chocolate diversion; a square of Lindt dark, 85%? chocolate. I savored it and don't regret the decision.
  2. I've had Caffix on a few occasions. 
  3. Today I totally broke and had a scone. It was a calculated break, I made the conscious decision to go to the kitchen and get the thing. It COULD have had something to do with watching a steady stream of Master Chef and Kitchen Nightmares for the past few days, or it could be that I just wanted a damned scone. In any case, it was an unsanctioned snack.
  • TMI ALERT: One would think that a diet consisting nearly 100% of fruits and vegetables would ... ahem ... MOVE things along, even for a tough case like me. Alas, either by way of the supplements, or my incredibly SLOW digestive tract, the Ultimate Reset did little to nothing to REGULATE. I'm disappointed, but not surprised. I'm actually relieved (ha!) that increasing my fiber and water intake alone will not solve my intestinal issues ... that means that other experimentation is necessary but I have a baseline of healthy eating to use.
  • Despite more frequent night-time trips to pee, I think I'm sleeping better. Bonus! Which of course means I am more awake during the day. The increased water and lack of sugars/carbs I'm guessing accentuates that day-time awake-ness. I wouldn't go so far as to say I have more ENERGY (pingpingping woohoo! bouncebounce look at me! I have energy!!), but I DO notice I'm not lethargic, aching for a nap, etc.
Only 2 more days. What happens next? To my husband's dismay, we're supposed to ease back into dairy, meat, etc, if at all. I really don't think it will be that much of an issue. I'm thinking about all the things I'd like to make soon, and some of them require cream in the sauce, that type of thing, so we'll have to ease into all of that (fall! chili! ground beef!). But for the most part, I don't think it will be difficult to get back to "normal" - as our normal wasn't that bad to start. 

I really miss coffee. And I don't really miss the caffeine. So that's nice. I know that even a decaf at Starbucks will have some caffeine, so I do need to be careful there, but ... I do look forward to coffee dates. And sometimes, a scone. :) 

Saturday, September 7, 2013

Ultimate Reset Day 11: Misc. Thoughts


  • Cumin is still my favorite seasoning. Yum. 
  • Avocado with a spoon. Also yum.
  • I wouldn't want to do the Reset in the winter. Have I mentioned this? The gorgeous freshness of the farmer's market so far surpasses paltry grocery store produce ... I can't imagine eating all these tomato dishes and salads with pasty, rock-hard "tomatoes."  Blick.
  • I wouldn't want to do the Reset in the winter. I would have a hard time not having tea/warm beverages in the morning and throughout the day. The soups would be nice but the salads (quinoa-based, lettuce based, cucumber based) would also not be as pleasant on a cold day.
  • I'm content to purchase my miso soup at a restaurant. 
  • I am still looking forward to crackers. But not so much that I'd break the plan to have one. 
  • Also: I do not miss cleaning CHEESE (cooked, baked) off of things.

Monday, September 2, 2013

Ultimate Reset Day 6: Random Thoughts

  • Extreme orthostatic hypotension and resulting vasovagal syncope this morning; increasing my salt intake to hopefully combat this. (note: this is a pre-existing condition of mine, I don't blame the diet, other than to say in "normal diet mode" I must get "hidden" salt from items in my diet .. perhaps the crackers I've mentioned? because I don't add it at the table and rarely use it much in cooking. Pondering what I eat and what I SHOULD eat to balance this phenomenon.
  • Roasted vegetables make the house smell glorious... even if they've charred into black crunchy things.
  • I still have a lot to learn in seasoning my own food without a recipe; watching Master Chef does not an intuitive cook make. 
  • my kids are troopers in the new foods department. They even ate the burned beet chunks.
  • My daughter loves salmon. (and lamb, and scallops, and lobster. She's an expensive date.)