Two Years...

It seems really weird to me that so much time has passed since my last blog entry. That was on August 22, 2009 and now we’ve already ushered in 2011. Time flies. It really does.

So why am I breaking the long silence? There are a few reasons. The first is that a few months back, a section of When Life Hands You Lymphoma was featured at Janet Huntingdon’s blog, Mugwump Chronicles. If you’re into horses and you like sound advice, common sense and want to read some of the best (and true) horse training stories ever written, you really need to follow Mugwump. The archives are hours of awesome reading. Trust me. I know.

Regardless, the featuring of this blog on Mugwump’s caused some debate and concern over what had ever happened to yours truly. I posted there to let folks know I was still kicking, but it made me feel guilty over other readers who hadn’t heard from me.

The second reason for breaking my metaphorical silence is that today, January 21^st, marks the second anniversary of my remission. Yep, two years. That’s pretty cool if I say so myself!

So, why the long hiatus, you might wonder? There were a few reasons for it. Primarily it began with something known as “Chemo Brain.” For reasons undetermined, a lot of cancer patients go through a stage (sometimes prolonged) of confusion, memory deficits, disorganization and…well, heck, in my experience, it was a bit like driving through fog. It’s possible to do, but highly stressful, disorienting and exhausting. Of everything that happened after my diagnosis, I honestly think the Chemo Brain scared me the most.

I knew that the quality of my writing was gradually deteriorating, but I expected to bounce back right away after the chemo and radiation treatments were finished. I didn’t. In fact, for a while it got worse. While I succeeded completing the 50,000 words for National Novel Writing Month smack dab in the middle of the chemo regimen in 2008, I floundered in 2009 and couldn’t finish. Heck, I barely managed to start. And that was long after I’d gone back to work! When you’ve always thought of yourself as a pretty good writer, that loss of mental cohesiveness is honestly pretty terrifying.

It took months to get the creativity and drive back, and the process was gradual and frustrating. In some ways, I’m still not quite there. But, I think I’m managing to do a pretty good impersonation of myself.

The other reason I went quiet was that remission and the cessation of treatments meant trying to assimilate back into a life that had been effectively put on hold for seven months. I’m sure this isn’t an unusual experience for cancer survivors, but it was similar to watching a dam break when you live downstream. All the nitty-gritty of the real world…troubles with the kids, entering back into the workforce, explaining to a very surprised delivery man that I wasn’t actually dead, all that neat stuff…came crashing down all at once. I’ve never been a very strong swimmer and treading takes a lot out of you.

But life goes on... Really, it does!

With the advent of getting my brain back (my friends might debate that!) I decided to address something that’s been on my bucket list for decades. To that end, I’m currently working toward an associate’s degree via online courses from Indiana Wesleyan University. It’s a huge, time consuming undertaking, but I’m a 4.0 student, so go me! After a lifelong scholastic inferiority complex it’s pretty nice to know that I can hold my own in matters of academia.

Just as exciting, a historical novel I wrote for the young adult market back before the lymphoma set in was recently accepted for e-book publication by Echelon Press’s Quake division. It’s called Servant To The Wolf and if all goes according to schedule, it should be released in September. If anyone is interested, shoot me a message and I’ll be sure to let ya’ll know more as publishing gets closer. (There’ll be a blog devoted to that, and I’ll link to it from here regardless.)

Getting slightly back on topic, my next CT Scan is on February 16^th. I’ve been having those every three months. And yeah, I’m still a really hard stick for blood draws and IV’s. The vampires have their hands full with me!

In a way, it’s interesting to feel so…normal…and to be pursuing life as though there’d been no interruption at all. (In fact, pursuing life with a little more drive and ambition than I had before.) It’s been really nice. And it’s been really tough. As life is supposed to be.

So, is this blog kaput? I mean, it’s been a really long time. Why resurrect it now?

In the words of Tevya from Fiddler On The Roof, “I’ll tell you. I don’t know.”

But there are things I didn’t talk about. There are things that mean a little more now than they did back in the beginning. There are things I’m still learning. There are people I know who've fought their own battles who deserve a moment in even this very small spotlight.

There was my first participation in a Relay For Life survivors' lap. That could be a blog entry all by itself.

So while I don’t see doing this blog as a daily thing, or even weekly, I think I’ll be revisiting it now and again. I think I owe it to the readers; past, present and maybe future.

And hey, if you've stumbled across my little section of the internet here and would like to do a cancer oriented patient, survivor or caregiver guest blog, let me know!

But for now, by the grace of God, it’s been two years.

Two years. :)

YES!!!

Eight Walls and Radioactivity

On Wednesday the 20th of May, I underwent the second PET scan of my cancer patient career. PET's and CT's are going to be necessary and semi-frequent interludes in my life for at least the next few years while the doctors and I watch to see whether remission is a permanent state or just the intermission.

In any case, PET stands for Positron Emission Tomography which, according to my friends at Wikipedia is a "nuclear medicine imaging technique which produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radionuclide (tracer), which is introduced into the body on a biologically active molecule. Images of tracer concentration in 3-dimensional space within the body are then reconstructed by computer analysis."

So, like, they inject you with radioactive stuff, stick you in a metal tube for around an hour--where you are NOT allowed to move--and then look to see if any of your innards are sparkling like a Stephanie Meyer vampire in direct sunlight. Hey, you want medical jargon, go talk to an oncologist. I manage a convenience store.

Anyway, let me back up a little and walk you through the process. About an hour before my scheduled test, I report to Oncology-Radiology. I'm met by a very nice young guy in scrubs who leads me through the catacombs of the basement of UW Hospital (they're under construction) and ushers me into the weirdest shaped room in the history of rooms. More on that later.

In that room is a chair that, against all expectations, reclines, even though it looks nothing like the coveted Big Blue Chair in my living room that the dog and I compete for on a daily basis. [The dog almost invariably gets the chair, but I maintain control of the remote, so it's a wash.] Trading small talk about the weather, life in general and how excrementally microscopic my veins are, the nice technician/nurse (not sure which) manages to stick a needle into my left arm, because the right arm is frankly crap, and methodically pumps a syringe full of radioactive cocktail into ye olde circulatory system.

[As a matter of interest, the literature from the hospital assures me absolutely that the radioactive tracer stuff is completely harmless, no trouble at all, don't give it a second thought, we promise, pinky swear, but please do us a teensy favor and avoid pregnant women and infants for a few hours after the procedure, okie dokie? Thank you so very much.]

After the injection is complete, the nice guy reclines the chair for me, (I'm not allowed to do it myself) offers pillows and blankets for my comfort, then leaves, turning the light down to a nocturnal glimmer as he goes out the door. For the next forty-five minutes or so, my job is to lie very, very still and be mellow. Totally mellow. To encourage this state of mellowness, I am not permitted to read, or to listen to music, or even to have a friend sit with me. In other words, my mission--and I'd better decide to accept it--is to be bored. There is a security camera mounted on the ceiling and aimed directly at me, probably in case I decide to jog a few laps or perform jazz hands or something. That would be bad.

The reason for all this enforced inactivity is as follows. The radioactive tracer is attracted to cellular activity. The more activity, the more the tracer sticks, the more it shows up on the scan. Therefore, fast replicating cancer cells should show up even if they're just getting started. (The better to try to beat them into submission again before they manage to get a foothold, m'dear.) So logically, if you engage your brain in, say, a lively discussion about Creationism versus Evolution, or you start jamming to a really rockin' angry-woman Ani DiFranco song, odds are THAT'S going to glow on the scan like a neon sign and potentially camouflage any cancer cells that might be trying to crop up in the ol' gray matter. Or, at least, that's my assumption.

This in-chair period of mental downtime is not as easy as it ought to be. I'm a writer. I honestly don't know how to stop my brain from churning along at a rapid-fire clip, short of falling asleep, and so I'm not entirely convinced that they wouldn't have been better off to let me read a really boring pamphlet. Before I catch myself, I write a chapter of the book I'm working on in my head while I'm sitting there in the dark. I don't mean to. It just happens. Once I realize what I'm doing, I try to quiet my mind and, y'know, become one with my environment.

(Sadly, if I'd been doing it right, I might not be able to tell you now that the weird shaped room had eight walls of varying dimensions. I spent some time obsessing over why any room should have eight walls. There were two pictures hanging on the walls in front of me--both floral, which I found moderately uninteresting because I'm a landscape person. The flowers in question were purple with a white background. There was a clock to my left. It ticked very loudly in a Chinese water torture sort of way. And of course, the mind can run wild when you're trapped in a strange place under a security camera. A thousand McGyver episodes flashed through my head and wildly improbable escape scenarios began to evolve in my imagination. I already had some radioactive material! All I needed now was a roll of duct tape, a raw egg and a lawn mower engine!)

Anyway, forty-five minutes into some of the most productive brain exercises I've entertained in quite a while, (oops,) the nice tech-nurse-dude comes to fetch me. I am then bade to use the ladies' room, no pressure at all when there's some guy waiting outside the door for you to empty your bladder, then away to the Big Machine we go.

After a check to ensure that I'm wearing no metal on my person--jeans, belts, under-wire brassieres, glasses, watches, belly button piercings, metallic glittery skin lotion, cyborg implants, whatever--I am guided onto the narrow metal bench and subsequently strapped down, re-blanketed, told once again not to move (unless there's an emergency, in which case I should wave my toes meaningfully) and sucked into the maw of the PET Scanner: The Tube.

Never having been in a coffin before, and not in a hurry to do so, that's still the vibe you get when the gently curved top of the Tube is only a scant few inches away from your nose. It doesn't help that you're strapped down in the traditional funeral visitation position. It really doesn't help that you're supposed to remain absolutely still. McGyver, here we go again!

Truthfully, many PET scan patients need to have some sort of sedation because claustrophobia can run rampant. Not being the claustrophobic sort, this is not an issue for me. (I'm slightly embarrassed to admit that after the first ten minutes or so, I took the nap I probably should have taken in the Eight Walled Flower Picture With Security Camera Room.)

Half an hour later, I wake up as the table slides me back out of the Tube like a slightly misshapen loaf of bread. Unstrapped and released by my captors, I put on my glasses and head for the cafeteria where they offer a reasonably priced omelet and some incredibly greasy bacon. The pre-test six hour moratorium on food and beverages is now a thing of the past. Yay! Then it's another hour and a half wait before I see my doctor.

I'm fortunate that I'll get my results before I leave and it's a good report, but I don't mind telling you that the waiting time weighs as heavily on my gut as that bacon. It always does.

The uncertainty factor is probably a good discussion for another day.

So, how's that working out for you?

On November 1st, in the year of our Lord 2008, I followed my normal daily procedure and went to a small nearby restaurant for breakfast. Breakfast is a big deal for me these days. In the Pre-Cancerous Era, work began at 6 o'clock in the morning and breakfast generally consisted of coffee and more coffee. Honestly, I'm seldom hungry in the morning. It's just one of those things.

After the diagnosis, work was a non-starter and breakfast became mandatory. The number of medications I'm required to take varies a bit, but the minimum amount of morning pills is four. On a bad day, post-chemo, I might take up to nine at a time. (I also have meds to take in the afternoon, at bedtime and there are a few more in the 'as needed' arsenal.) Taking them on an empty stomach is not optimal.

So, that brings us back to the restaurant. I like the place. It's an easy door-to-door shamble on a sunny, warm day. The waitresses and regulars know me by name. It's seldom very busy when I go in, so I worry less about catching some bug while my immune system is out of whack. (Technically, I'm supposed to wear surgical masks out in public, but how could I eat?) It's extremely affordable, the food is quite good and it gives me a chance to get the heck out of the house. It's my little slice of daily sanity.

Anyway, on the 1st, I was sitting there eating eggs (scrambled), toast (white), and bacon, (just-right-crispy-good) when the door opened and a man walked in. At first, I was too busy writing my first dose of literary schlock for National Novel Writing Month to take much notice of him, but eventually it occurred to me that he was going booth to booth doing the handshake schmoozy thing.

Ah. A candidate. Making the pre-election day rounds. Things like this happen in small towns. Seriously, the last time we elected a mayor, the only candidate who didn't bother to attend a Q&A session hosted by the local charter school kids got eight votes. Eight. You schmooze or you lose.

Anyway, inevitably, the guy entered my peripheral vision and I looked up benignly.

"Hi!" he said with the kind of smile that suggests that the bearer has to apply ice-packs to his strained facial muscles every night before bed.

"Good morning," I replied and accepted his proffered hand in a brief, but warm shake. I think he'd been practicing. It was a good handshake. (I didn't spoil it by hauling out my mini-bottle of antibacterial hand sanitizer until after he left.)

He sized me up, clearly trying to fit me into some sort of niche so that he could, you know, relate to me. I have to admit that a bald chick wearing a "Cancer Sucks" baseball cap does not blend well into the normal constituency demographic. For all I know, he was trying to figure out whether I was going to live until election day. Cause, you know, otherwise, why bother?

"How are you?" he asked, buying time and focusing mostly on my hat.

I know my right eyebrow twitched, but I answered obediently, "Fine, thank you. How are you?"

"Great, thanks," he said, and went on manfully, "I just wanted to stop a moment and introduce myself. I'm [Insert Name Here]. I'm running for [Insert Office Here].

I nodded encouragingly. I'd seen that name on a million yard signs, and brochures featuring his face had been shoved into my storm door at least ten times. For a candidate whose platform seemed based on saving the planet and ecological responsibility, I'd always wondered if the ghosts of all those trees sacrificed on the alter of his saturation bombing style of publicity haunted his dreams at night. I should have asked him.

He paused a beat, then asked offhandedly, "Uhm, do you have cancer?"

"Why yes, Mr. [Insert Name Here]," I said without audible sarcasm. "I do."

"Oh."

"Non-hodgkins lymphoma," I added helpfully.

I really expected him to trot out some homily regarding health care or insurance. I mean, those are things candidates presumably have some sort of position about, right? At the very least, I thought he might do a little *tsk* of sympathy at life's unfairness.

What he said was, "So, how's that working out for you?"

How's that working out for me?

I think he was tasting his bunions before it was entirely out of his mouth, but sometimes you just can't stop that runaway freight train. I can relate. I've said a few astoundingly inane things in my time. We all have. It was just his bad luck that it happened on the campaign trail while dealing with a cancer patient of all things. At least there weren't any reporters around.

Hey, I was nice! I smiled. I told him, briefly, that I was undergoing treatment and that the treatment was going well. I don't know if he ever heard me, because I think his internal replay was absolutely writhing at the stupidity of his question. He wasted no time in extricating himself from the situation by wandering off to introduce himself to a couple he'd already introduced himself to. It was sort of cute.

But it does bring up the question: is cancer a subject you really want to broach with a cancer patient? Or should it be considered a conversational 300lb. gorilla to be avoided at all costs?

For this cancer patient, it's not an off-limits subject. Not at all. I don't mind people asking what I have. (Keeps them from staring at my chest and speculating whether I lost one or both.) I don't mind questions. I do try for the most part to keep my answers informative but reasonably short. Unless you really want to hear phrases like 'anterior mediastinal mass' or get a play-by-play recitation of my latest CAT scan adventure or a monologue about nausea, brevity is best. Well, if you're reading my blog, maybe you do want to hear about all that stuff, but its probably not appropriate for the man-on-the-street. I am cognizant that there is such a thing as "too much information." I'm okay with that.

Really asking is better than speculating. After all, it's my 300lb. gorilla. I'm not going to let it throw bananas at you or anything. (Although it's not my fault if you feel like you've tripped on a peel.)

Oh, but if you're wondering if I voted for Mr [Insert Name Here], I'm afraid you're going to have to keep wondering. I don't talk about things like that.