the scoop

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

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.