When Life Hands You Lymphoma . . .

One for the Win Column

2011-07-01T20:44:00.014-05:00

This is going to be a mostly non-cancer related post, but it's sort of groovy and I wanted to share.

If you know anything about me, you know I'm a writer. It's not how I make my living, but I've been published here and there, including a book several years back. I've won a few contests and stuff too. I'm even a Mutant Reviewer From Hell, shamefully in authorial arrears. More importantly, writing is something I have always passionately loved to do, and ... it's honestly something I thought I'd lost during my treatment and even in the first stages of remission when all the mental wires seemed hopelessly crossed. I'll even let you in on a shameful little secret. What "writing success" I had during the first year of my remission, with the exception of this blog, was mostly retreads of things I'd written before my diagnosis. I was beginning to think I'd become nothing more than an editor for my archives. So, while this blog is not meant to be commercial and I have no intention of abusing it that way, I did want to share this with you all:

Yep, that's me.

Pretty nifty, huh?

I dithered for a while, but I've linked the cover art to Omnilit.com, one of the places that Cassidy Creek Bridge can be downloaded from. Buy it if you're interested. It's a short story and at 99 cents, it's not going to break the bank. :) Let me know what you think. I'd love to hear your thoughts! If fiction isn't your cuppa tea, that's okay too. Like I said, this isn't a commercial blog. I really just wanted to share this small but mighty moment of victory with you. Chalk one up in Sue's personal win column. This is my proof, to my satisfaction, that lymphoma did not take this very fundamental part of me away.

I am still a writer.

Two Years...

2011-01-21T00:01:00.002-06:00

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

2009-08-22T09:08:00.010-05:00

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.

Remission and Romeo?

2009-05-24T15:16:00.009-05:00

Some of my readers know that, among other things that actually pay the bills, I'm a writer. My published book, a novella, falls somewhere between Women's Fiction and Literary. I have a historical fiction middle grades manuscript that ought to be making the rounds as soon as I get up the gumption to hack out another query letter. There are three mostly completed romance-type novels in the works. I've even won a few awards over the years, mostly from the Wisconsin Regional Writers' Association, but lately I've branched out a bit.

Oh, and I'm a senior staff writer (somewhat in arrears at the moment) for the Mutant Reviewers From Hell. Seriously. Check out my Twilight review. Geek much? Moi?

Anyway, last year, in need of something to submit to a regional periodical, I went into an old novel-that-didn't-happen and mined out a scene that I wrote . . . oh geez, maybe in 2004. I changed a few things, generally cleaned it up and sent it in. It was accepted.

Get this: my protagonist was in remission from non-Hodgkin's lymphoma. How eerie is that? Note to self: Do NOT do unto your characters what you don't want to have happen to you because your karma is seriously out to get you, Sue!

The periodical (The Wisconsin Writers' Journal) hadn't gone to press yet when I was diagnosed and the publisher, a dear friend, offered to pull the piece. I told him not to and it was duly published. I'm going to reprint it here because the dilemma it poses has been much on my mind lately. Also, it's very short. Here it is.

Volition

I tossed my duffle bag into the trunk, slammed it shut with more force than necessary, then turned. Daniel stood a scant ten feet away, hands stuffed deep in his pockets, hair rumpled.
"Sneaking away?"
"Getting ahead of rush hour."
His feet were bare. "Are you coming back?"
"I don't know."
He gave a short laugh. "There's something to hang my hat on."
"I told you already--"
"I know what you told me. I heard every word you said. The question is, did you hear me?"
"Yes." I had. Remission or no remission, I love you.
And he did. I didn't doubt it for a moment. Here and now, in the coolness of a spring morning with the ocean's endless heartbeat in our ears, the sun playing in the green of the grass and dancing with the leaves on the trees, he loved me. Remission or no remission. Cancer or no cancer. Statistics be damned. He loved me.
If only I hadn't seen his eyes when I'd told him the truth. If only I hadn't traveled this path before.
"I'm not him," he said.
True. Daniel wasn't Eric. Eric couldn't cope. Maybe, just maybe, Daniel could.
Maybe there'd never even be a reason to find out. But eighty percent survival meant twenty percent mortality. To me, twenty out of one hundred looked like a massacre.
"Emily?" Closer now. Softer now.
I met his gaze. I owed him that much. The corners of his eyes crinkled, not quite a smile, the subtlest of encouragements.
It was so very tempting.
But I had seen his eyes. More than that, I couldn't- I wouldn't put anyone else in a position to have to choose. This time, I would choose. For both our sakes. Whether he'd ever understand that or not.
There wasn't any reason to put it off any longer, so I stuck out my hand in a brisk way. "Take care of yourself, Daniel."
For a moment, I thought he'd refuse, but then his fingers wrapped around mine. "You too."
We disengaged and I went to get into the car, but he stopped me with a hand on my shoulder. "Em?"
I turned. "What?"
His arms wrapped around me, his face in my hair, my cheek against his chest. I held him just as fiercely, and when his mouth met mine, I welcomed it.
In the end, I did leave. Daniel, propped against the pillows, silently watched me go.

End

(Please do not reprint without permission, folks. Okay?)

FYI, I've been divorced since 1998. I've had a few very short term relationships and one semi-prolonged bout of seriously pathetic unrequited adoration, but I've long since gotten to the point where I've made peace with my presumption of perpetual singleness. If I get swept off my feet, no one will be happier than yours truly, but no one will be more surprised either.

Having said that, it's Spring and even a middle-aged woman's heart sometimes wants to go pitter-pat for a significant other. And so, semi-academically, the dilemma in Volition interests me even more now than it did back when I wrote it. No matter who you are, I'd love to see some comments and discussion on this:

What the heck does a person in remission do when love comes knocking on their door? Making the ginormous assumption that one's potential swain professes their love regardless, do you simply throw caution to the winds and yourself into their arms? Do you beat them with the "reality" stick for a while? Do you show them pictures of you sans hair? Do you . . . run for it?

How do you know that what they're okay with now will still be okay if the worst should happen? How can you tell?

Taking it a step further (or back, really) is it even okay for the remissionally blessed to seek out . . . a potential someone special? Do you wait a few years to see if you stay cancer-free? Do you go for the gusto now? Putting aside the fact that no one really knows what tomorrow might bring, what do you do when your tomorrow has a forecast of 20% or 30% or even 70% malignancy?

I really want to know.

Interestingly enough, before the lymphoma, I had a profile on a popular singles site. I don't do the bar scene, nor do I "get out much" according to my friends, so it was sort of a passive attempt at letting Mr. Right find me. Yeah, I know, not very pro-active. Better than nothing maybe. I heard from many wonderful Nigerian men, however, who proclaimed that their hearts overflowed with the joy of my great beauty. I suspect Nigerian men need to find themselves some decent ghost writers in addition to someone willing to help them claim their six million dollar inheritances from the recently deceased General Suckabornevryminnit.

After my diagnosis, I left the profile up with the note that I was fighting cancer and off the market, but thanks for looking anyway. I received some really nice messages from people, including a few really supportive comments from cancer survivors. Then I received, "Liked your profile, when can we meet?" (Only not as well spelled.) Bald, ill and dubious, I replied, thanked him for the interest and asked, "Did you actually read my profile?"

"Yes," he wrote back immediately. "I liked the part about the cuddling."

Oh stop staring at me. Everyone likes cuddling. I can put cuddling in a profile if I want to. You'd do the same. It's a dating site. I was just . . . keeping it in the genre, okay?

Anyway.

"Did you," I inquired, "see the part about the cancer?"

This is his reply, verbatim: "yes Just would like to find someone so i'm not alone all the time.Don't you miss cuddling and sex?"

The knee-jerk reply that I didn't send was something to the tune of: "Well yes, by golly, I guess I do! But please excuse me if I don't take a break from driving myself to and from chemotherapy to slap on a wig and canoodle with you so that YOU don't feel alone all the time, you licentious, semi-illiterate, punctuation-deprived, self-absorbed turd-burger!"

What I actually sent was a polite "no thanks, but I wish you the best". This proves that Mom raised me right and that I am mostly a nice person. Luckily, he accepted that without argument. I really don't need an Internet stalker on top of everything else.

But that leads to another question, albeit a very cynical one. Does cancer make one an attractive target to total losers because of a presumed Desperation Factor?

(On second thought, maybe I don't really want the answer to that. )

Thoughts? Comments? Flames? Experiences?

Daniel and Bob - A Story of Two Tumors and An Idiot

2009-05-21T10:07:00.018-05:00

One of the big headlines in the news right now is the story of the 13-year old Daniel Hauser who has Hodgkins disease and is currently on the run with his idiot--I mean loving--mother to avoid a court ordered regimen of chemotherapy. Seems that the family, Catholic but somehow hooked into some Native American beliefs, chose to opt for a more holistic approach of ionized water, special diet, sweat lodges, magical fairy dust or whatever. Only problem is, the tumor (which shrank dramatically with the first and only dose of chemo the boy received) is now back to its original size and growing like a friggin' weed.

Now I do not want to open a can of worms regarding peoples' beliefs or their right to refuse the treatments recommended by the international medical community, whom--I'm just taking a wild guess here--might know just a little more about physiology and oncology than your average purchaser of "Malignancy B-Gone" pills or the zillion and one Internet authors (heh) who know someone who knows someone who recovered from cancer via pure thoughts, a diet of flax and a strict chanting schedule.

I know, believe me I know, that chemotherapy is toxic and nasty. My straight and untamed hair is now curly and untamed. My fingernails are still so messed up that they break off if I just look at them in a funny way. If chemo does that to hair and fingernails even months after the process, who can guess what else is going on that I don't know about? I won't quibble too much about a fully informed adult who makes the decision to go totally holistic. To each their own, I guess. BUT Daniel is thirteen years old. He is not old enough to vote, or drive, or enlist in the military. He's at an age where, when the rubber meets the road, he'll still believe what Mommy tells him and Mommy is telling him that the chemo is more evil than the cancer itself.

Is she on crack?

Here's where I'm coming from:

I'm still alive.

Without the chemo, I would not be alive. No question. No debate.

Here's Exhibit A: This is Bob The Tumor. (Also known as Jar-Jar in certain circles.) This is a CT scan cross section of yours truly.

At the bottom of the picture, you can see the circular shape of my spinal cord and my two shoulders emerging left and right. The top of the picture is the front of me. You can even see the ribs wrapped around my inner bits. Hello, ribs! Now, if you look at the right side, you can see a nice large black area. This is a lung. It's a little occluded, but comparatively speaking, it's just chock full of oxygen. On the left side of my body though, where there really ought to be another space full of the oxygenated goodness of my other lung, you've got ... Bob. (By the way, the white circle in dead center is [iirc] a chamber of my heart--which proves that I have one, so the debate can stop now.) The yellow line is the official measure of Bob's width. 167mm. That's 16.7 centimeters. That's freakin' enormous, okay?

Yes, when I saw that sucker, well...you can insert the expletive of your choice. I think I went through just about all of them. I think I even made a few up. I needed a brush and dustpan to scrape my jaw off the floor.

Mind you, this CT scan was taken on August 23rd, when I was still (just barely) capable of lying down for brief periods. It was another week before I was hospitalized and biopsied. At that point, I could not lie down at all without being completely unable to breathe because of the pressure caused by Bob's expansion. In fact, the nurses posted a sign over my bed promising the immediate and painful execution of any well-meaning moron who attempted to make me more recumbent by playing with the bed controls. So, at the time my first chemo treatment happened, Bob would have been even bigger than the picture indicates.

First chemo was on August 31st. By September 5th, less than a week later, I no longer needed to stay in an upright position or risk respiratory failure. I could breathe again. I didn't need to be on oxygen any more. (For anyone who hasn't been on oxygen, you get boogers like friggin' stalagmites!) Certainly the worse for wear, I was still fit enough and stable enough to be released from the hospital.

That's one week between certain death and a new lease on life. One chemo treatment. One. Why, I ask you, by all that's holy, would I have refused to take that second dose of chemo? Or the rest of them? Yes, I was sick, yes I was tired, yes it was a winter I'd rather not repeat. I sure came up hard against the wall and wanted to be able to quit. But when you get such dramatic results after the first dose, I would think that anyone unwilling to overlook the mouth sores and nausea in favor of breathing has just got to be a few fries and a plastic Power Ranger short of a Happy Meal, ya know?

Really, can I see a show of hands of people who can look at Bob in August and have any belief that I would be alive today without the chemo? Anyone? No? That's what I thought.

By all reports, young Daniel had an equally positive effect on his tumor from his one and only dose of chemotherapy. By and large, Hodgkins Disease is even a little more treatable than non-Hodgkins. But I bet the drugs made him feel sick. And I see he lost his hair. That's really a shame. It's awful for a kid to have cancer. I don't say that lightly. The blessing of my having had cancer is that it was me and not one of my kids.

Right or wrong, Daniel's doting parents have had their shot with the super-speshul water and the strict diet and Daniel's tumor is now again as large as it was in the first place! And so, from where I sit, from my very specialized and I'd like to think well earned point of view, if Daniel's condition worsens and he does not survive, his parents will be guilty of manslaughter. Maybe even murder.

If that happens, and I sure hope it doesn't, it would be best for me to never meet Daniel's mom. I'd punch her in the face.

I could do that, you know, because I'm still alive.

Mile Marker 124

2009-03-06T17:56:00.002-06:00

Driving down Interstate 90/94, just south of the Columbia/Dane County line is mile marker 124. It's easy to notice because a set of high voltage power lines run almost perpendicular to the highway in that exact spot. I'll be the first to admit that there are certainly more interesting sights to see along the stretch of road. One favorite is the large sign by ABS Global Inc. (Known as the world leader in bovine genetics. In other words, they sell designer moo-sperm.) Prone to change at least once a month, February's stated: "Valentine, I'll love you for heifer and heifer." Gotta love those crazy ABS sign guys. And if you look closely to the west at the exit for Highway V near DeForest, you might just see a pink elephant.

Anyway, I tend to notice ol' mile marker 124 because it proclaims the date of my birth. January 24th. (No, not 1924. I know you were thinking that.) In fact, looking for 124's and even plain old 24's is a bit of a habit for me. I consider it entertainment on the long haul between Wisconsin and my home state of Pennsylvania. It's something to do when the kids are asleep and I can't find my U2's Greatest Hits CD. But the 124 by the power lines has acquired a special place in my heart. I consider it a confidant of sorts. A friend.

I'm something of a homebody, you see. I like hanging out in my town. I prefer familiar surroundings. (One of the biggest wrenches of my life was that move from Chester County, PA to Columbia County, WI, but sixteen years after the fact, I think I'm almost acclimated.) I don't like driving in cities, even smaller cities like Madison. I hate picking my way through unfamiliar territory. Incidentally, I am pathologically afraid of driving around in parking garages. Don't ask. I have no idea.

The point is, if I'm chugging down the Interstate–to Madison or beyond–there's usually a pretty good reason for it. And thus, 124 isn't just a metal sign in the middle of not-very-much. It's a touchstone.

At that very spot, I've grinned ear to ear, music thumping from abused speakers and the wind at my back in the adrenaline-surging beginning stages of vacations to visit hearth and home, friends and family. (Then Chicago happens, and I'm white-knuckled cringing pretty much until I've left Indiana behind.)

At that very spot, I used to shed tears of despair on the way to, and often from, a meeting with the divorce mediator and yet another ugly scene.

At that very spot, I've nodded to 124 with pride over a new accomplishment and bitten my lip with anxiety over a relationship gone sour. Sometimes I just wave at it with a polite smile. I can share things with 124, you see. It doesn't judge me. It doesn't offer advice. It's just there. As am I, for that brief moment.

Lately, 124 is where I grit my teeth and do a gut check. I resolve to get through this treatment, this test, this appointment, this episode with my sense of humor intact. Hopefully my dignity too, but definitely, please God, my sense of humor. Throughout radiation, I've seen it five days a week, twice a day, to and from. I've come to depend on it. I hang in the right lane just to make sure a tractor trailer doesn't interfere with those small, precious moments of evaluation and even silent prayer.

I like 124. If you're ever driving along that section of the Interstate, look for the power lines. Say hello if you don't feel like a dork doing it. Take a second–maybe two–and think about not only where you are, but who you are today, right now.

I've often mused that if I ever write a memoir, the title ought to be Mile Marker 124.

Of course, I'll have to do something interesting first.

What To Expect When You're Not Expecting

2009-02-24T14:08:00.007-06:00

I got mad a few weeks ago. Yep, I finally got angry about something. Really angry.

It's about time, you're probably saying. Go for it, Sue! Shake your fist at the heavens and have yourself a good old fashioned snit.

Well, no.

It really didn't have anything to do with cosmic injustices or channeling visceral fear into fury, or even--except in a somewhat roundabout way--cancer.

It was the pregnancy test.

Let me back up.

I met my new radiology doctor about three weeks ago.

Like my hematologist, this doctor is female, young, pretty and very, very nice. The only significant difference is that my hematologist is blonde and my radiologist is brunette.

(In retrospect, this might be a small part of my problem. I could, admittedly, be harboring a repressed resentment for young pretty females who are very, very nice and could probably buy my house and its contents [children optional] with their pocket change. Even overlooking my military chic 'do, there's no escaping my all-surpassing plainness, limited potential and Wal-Mart couture.)

Anyway.

Dr. Brunette called me on a Friday afternoon. "Is this Susan?"

Y'know, when I was an inpatient, I filled out a form that specifically asked about preferred nicknames and I emphatically printed out "Sue." I have no idea why they gave me that form, because everyone there persists in calling me Susan anyway. What a waste of ink.

"Yes?" I answered cautiously. Telemarketer types like to call me Susan too, so if I'm not on one of the Caller ID phones, I am fully prepared not to be me. Seriously, even my parents have been trained by now.

"Hi Susan. This is Dr. Brunette. I understand you're all set to begin radiation on - *pause/papers shuffling* - Monday?"

"Yes, that's right. 11:15."

"Great! Now, one little thing I forgot to mention before is that it's hospital policy to require a pregnancy check before we can administer your first treatment."

I laughed. "There's not a chance I'm pregnant. Believe me, no chance."

"Oh, I know," she answered sympathetically. (She knows? How does she know?! Am I that obviously ugly and awful?) "The problem is, it's hospital policy unless you're in complete menopause or you've had a hysterectomy."

"But- but I haven't even been on a date in five or six years!"

"I know," she repeated with feeling. (What the heck? Are there hidden cameras in my house?! Who is this woman?) "If you'll just come in a few minutes early, it's only a urine test." Because that's supposed to make me feel better about it? I'm used to holding my arm out for a stick. Urine tests demand performance, blood tests require passivity.

" . . . !"

"Okay?" she asked my loaded silence.

I'm not in the habit of arguing with my doctors. Besides, although she didn't say it, there's an element of potential blackmail here. Pee in the cup like a good girl or we won't increase your chance of heart problems, secondary cancers, thyroid issues, tracheal swelling or skin damage by shooting radiation into your chest on a daily basis for several weeks. So there.

. . . !!!

In any case, I acquiesced. I went early, peed into the cup and spent quite an awkward length of time lying on the treatment table in a state of, shall we say, drafty dishabille, while the technicians traded banter about the weather and drew pictures on me in a rather personal location with indelible marker as we waited for the phone call from the lab to give them the go-ahead to blast away.

I will, of course, undoubtedly be billed for a test that merely proved what I already knew.

Oh yes, I know my anger is unjustified and out of proportion. Undoubtedly there are some idiotic broads out there who would be stupid enough to deny a possible bun in the oven. Maybe in the hopes of having an offspring who would a) merit a hefty lawsuit, b) be disabled enough to guarantee monthly checks from Uncle Sam in perpetuity or c) have really cool mutant powers with which to either save the world or to be sold to a carnival for a hefty sum.

Cynical? Moi?

I even admit that they almost certainly ran a preggo check on me in the hospital before they started chemotherapy. I just don't remember that because I was, well, not completely with the program back then. Heck, they could have shoved a turkey baster sized needle into my chest and I wouldn't have complained...

...Oh, heeeeeeeey...

But that's a story for another day.

In the meantime, I would like to inform you all that I am officially... NOT pregnant.

Sorry Pastor, I guess we'll have to cancel that trip to Rome. No Immaculate conception here!

The Art of the Exhale

2009-02-13T13:33:00.007-06:00

When I was in the hospital, they initially put me in a ward for the thoracic surgery candidate-type patients. The nurses were awesome, very competent and friendly. I think they enjoyed a patient who, while definitely the worse for wear, wasn't one of the pain-med fuzzy, post-surgical majority. The day after I was diagnosed, (it was understood that I'd be moving from the Thoracic section to Oncology, but they were still sorting out rooms,) one of my regular nurses came in and sat with me for a while. She wasn't used to things like this, she said. She hadn't expected that I might have cancer and or that surgery wasn't in the cards. She handed me a box of tissues, but really, she needed them more than I did. Hey, a nurse who can cry over you is a wonderful person indeed, but it's a little unsettling, y'know?

Once I moved to Oncology, I had another visitor. This time, it was the hospital chaplain. Without hesitation, she also handed me the ubiquitous box of tissues, then waited for me to... oh, I don't know. Vent? Bawl? Rage at the universe? Who knows? I didn't bother. I think she was a little disappointed.

A few weeks later, after I was cozily ensconced back in my home sweet home, the phone rang. It was a nurse who worked for my insurance company, assuring me that "We're in this together." (Presumably as long as the premiums continue to arrive in a timely manner.) We went over my treatments, my meds, how I was feeling, what side effects I had or could expect, etc. etc. etc. And then she asked how I was handling my depression.

"If it happens, I'll let you know," I assured her.

"It's only natural," she soothed, apparently still reading from a script that I'd unwittingly deviated from. "Has your doctor prescribed anything for it?"

"Uh, not unless you count the Lorazepam." (Lorazepam, by the way, is an anti-nausea medication, but it works mostly by knocking you unconscious for four hours. Thus, it is also considered an anti-anxiety medication.) "If I need anything though," I added, "I'll definitely ask."

There was a long silence at the other end of the line, then she clarified. "You're not depressed?"

"Cartwheels in the streets? No," I said. "Depressed? Also no. It is what it is."

Which has, in a way, been my catch-phrase through the entire mess. It is what it is.

Now to be completely honest, I did give depression a try about ten years ago. Post-divorce, I was so depressed that I was practically catatonic with it. I never even went to a doctor or counselor, because, you know, no one cared about me anyway. *Snurfle.* All it did was give me raging indigestion. So yeah, I'm not going to sink into a blue funk over cancer, but shouldn't I, at the very least, have been scared out of my tiny little mind?

Over the weeks and months, even a few of my closest friends have given me the doubtful eyebrow twitch and expressed a belief that I am not emoting as honestly as I ought. I haven't bawled, or shed more than the occasional private tear, or raged at the unfairness of the universe. Instead, I've cracked jokes and played video games. My friends don't think it's... well, healthy.

In fact, it got to the point where I was starting to wonder about that myself. It's not that I don't care. It's not that I'm not concerned. And though I am serene in the knowledge that my Redeemer lives and that there is undoubtedly a niche for me in Heaven, that doesn't mean that I haven't earned the right to at least a moderate hissy-fit or two here on Earth.

This is what I've come up with.

I've spent the majority of my years working, in some capacity, with horses. (Oh come on, you knew I'd bring horses into this, right?) From summer camp, to riding lessons, to stable management school, to actually managing a stable, to giving riding lessons to kiddies, to training and mucking and grooming and even owning a succession of four-legged carrot-crunchers myself, I have dealt with horses on and off for thirty-three years.

Horses are reactive creatures. What's more, they're prey animals. Lions and tigers and bears, (oh my!) think that our equine friends taste mighty fine . Naturally therefore, horses are always instinctively on the lookout for the next bug-eyed horse eating monster. (Especially the tricky ones shaped like trees, rocks or plastic grocery bags.) At the first hint of danger, most horses will gather themselves, leap into the air, bolt for the horizon at Warp factor 9, and ask questions later.

Horses, to be succinct, are paranoid freaks.

So, what's the worst thing a human can do around a horse?

Show fear.

When you're trotting along on a brisk October morning and a flock of birds erupt from some nearby trees and your horse's head shoots up in the air, ears at rigid attention, and he plants his feet, bunches his muscles and snorts a triple exclamation pointed countdown for launch, what does the smart rider do?

Exhale.

Sigh.

Relax.

And then, just maybe, if you're lucky, ol' Thunderguts will pause a moment and think things over. Hmm. Rider isn't scared. Rider is... bored? This is boring? Why would– oh. Oh! Those are birdies! Oh. Ha. Yeah. Oops. This is embarrassing. Uhm, we can trot again, right? Yeah, okay. Sorry.

On the other hand, if the birds explode from the trees and you snatch up the reins and start shouting, "Whoa! Whoa!" I can guarantee that your hayburner will be making tracks for the next county. Maybe you'll still be on board when you get there. Maybe not. The fact is, your tension and quick movements and shouting only reinforces the scariness of the situation. My rider is freaking out and she's a carnivore who eats cows in a bun!!!! Eeeeek! Those birds must be piranhas with wings!!! We're all gonna dieeeeeee!!!! Time to jet!!!!!!!!

It's not foolproof and it's not fail-safe, but the relaxed approach beats out the panicked one 999 times out of 1,000.

So, you practice. You practice the exhale. When the excrement hits the oscillation in the tiny little mind of your loyal steed, you learn not to take the time to evaluate what the "danger" actually is. By then it's too late. No, at the first sign of tension, you perfect the practice of sighing meaningfully. You learn how to relax your muscles and sink down into the saddle and become just a little heavier under the weight of your utter boredom in the face of the unexpected. You learn to center yourself.

And eventually, when he finds himself (or herself) not being eaten by those vicious plastic bags and menacing rocks, your horse starts to pick up the same habit. He draws his confidence from the rider on his back, or the hands on the reins, or the schmuck at the other end of the lead rope.

He learns to exhale too.

So maybe, just maybe, my lack of reaction isn't really a lack of reaction at all, but just a long established habit. Maybe all those years with the horses taught me an invaluable coping skill that I never realized I had until my friends started bugging me about how much I wasn't... well, bugged.

Maybe in a small way, I've learned the art of the exhale.

The Do's And The Don't's. Part I

2009-02-04T13:30:00.004-06:00

Once again, I'm belated with my updates. My best friend, Janet, calls periodically and snarks at me about it. This is as it should be.

Truth is, I had a nice lengthy post written and waiting to go. I was actually wandering around the 'net looking for a nice public domain picture to slap onto it before posting, when a little voice in the back of my mind said, "Wait. It's not ripe yet." When the inner-editor speaks, I usually listen, so we'll take that one back to the drawing board for a while.

In the meantime, I thought I'd list a few do's and don'ts of hospital etiquette that I discovered along the way. These ought to be common sense no-brainers, but you'd be amazed...

For the Patient:

DON'T order eggs for breakfast. I don't care what hospital you're in. The eggs will not be warm when you get them. For that matter, I'm not entirely certain they'll be eggs.

DO sleep when the opportunity arises. Sleeping through the night is not going to happen, because of those inevitable "vitals checks" and visits from the vampires, so if you can, nap like you've never napped before.

DO ask questions. In fact, badger someone into giving you a notepad and pen so you can jot down your concerns as they pop into your head. The things I didn't remember to ask during morning rounds could fill up a blog entry all by themselves.

If you happen to be on oxygen, DO be careful while shampooing in the shower. Trust me, that air pressure will shoot the water right up your nose and power-wash your sinuses!!!

DON'T forget that there are other patients around you. When you see a stampede running down the corridors with the crash cart, that's probably not the time to buzz the nurses' station to ask for more ice in your water pitcher. Okay, I'm exaggerating a little, but there really are times when it's not "all about you."

DO question the unexpected. If you're being given a pill that doesn't look like any of yesterday's pills, ask about it. If you hear or see something weird, push the call button. In all seriousness, during my first night in Oncology, I heard a crashing noise and assumed someone dropped a chair. Fifteen minutes later a nurse discovered that the man in the next room had fallen down while trying to get to the bathroom. I felt about two inches tall.

DO be honest. It's a hospital. The stiff upper lip schtick isn't going to impress anyone. Be up front about how you're feeling. If you're in pain, say so. If you're hungry, thirsty, constipated or the other extreme, nauseated, depressed, uncomfortable or dealing with insomnia, don't keep it to yourself. Sometimes there's nothing the nurses can do but sympathize, but quite often there are things that can be done to alleviate the problem.

DON'T get too attached to a specific television show. If you do, I guarantee that all future tests and procedures will be scheduled during that time.

For the Visitor:

DON'T overstay your welcome. Seriously, it's not that we patient-types don't love and adore you, but between the tests and the drugs and the vampires visiting in the middle of the night and, oh yeah, being sick, we get tired pretty easily. Don't let our politeness fool you. If we look like we're totally zonked out, give us a hug or a kiss or a pat on the head and be sure to check out the cafeteria on your way out. Just avoid the eggs.

DON'T rub our noses in it. Really, there's a time and a place to bemoan our situation and the impact that this is going to have on our lives forever after and all that stuff. This is not that time.

DON'T engage the nurses in conversation about our condition/prognosis while you're hanging out in our hospital room! Also, don't tell them amusing little anecdotes about our childhood/love-life/whatever. If we wanted them to know these things, we'd probably have mentioned them ourselves. Honestly, the person who has to measure my urine output is not going to be interested in my first hospital visit back when I was in the second grade.

DO send cards. E-cards, when hospitals allow them, are awesome good fun. One day I got over forty of them!

Unless you're instructed otherwise, DON'T shy away from small physical acts of affection. A held hand or a pat on the shoulder is often worth a thousand words and a handful of Vicodin. We feel weirded out enough by the tubes and needles and ugly gowns already. Don't make us feel more self-conscious, okay?

DO listen, if we want to talk. Otherwise, don't pressure us about our "feelings." Sometimes it's just nice to yak about a particularly stupid customer at work or what the dog did to the carpet or something else totally not cancer related.

Unless you've had the exact same illness, DON'T presume to tell us that you know exactly how we feel. Also please, please, please DON'T regale us with horror stories about your Uncle Fred who had cancer back in '72.

DO research our illness, by all means, but DO keep your findings to yourself unless we ask you to share. By the same token, don't assume you know it all. You'd be amazed at how many people I know who've said, "Well thank goodness it's NON-hodgkins!" (Newsflash: Hodgkins was historically considered more curable than non-hodgkins, thus the need for differentiation.)

I might add more later, but I'm going to ask my loyal readers to chip in. What advice do YOU have?

We Interrupt The Blog To Bring You A Brief Announcement:

2009-01-25T08:34:00.002-06:00

Remission.

Yep, as of a PET scan on Wednesday the 21st, the doctor says that I'm "officially in remission." I'll still be going through radiation as a precaution, but the signs are encouraging and the news is pretty good.

Yesterday, the 24th, I turned 41. Not a bad present, if I do say so myself.

It's Just A Cold . . . Right?

2009-01-23T20:15:00.002-06:00

Every year, I get at least one nasty cold. You know how it goes. Kleenex become an endangered species in your house, you're achier than a 1990's Billy Ray Cyrus song, and then there's that nagging cough that always seems to hang out a lot longer than any other symptom. To me, the coughing has always been the worst part of it. It's embarrassing. A nuisance. A pain in the patoot. But eventually, inevitably, it fades away.

Plus, I think as I've grown older, I've started to develop a few allergies. In years past, when I earned my keep by slinging around horse manure and such, I lived in a world of dusty hay mows and heavily shedding ponies without so much as a twitch. These days, I can barely drive past a particularly green field without pausing for a sneeze and a blow.

Then there was the flood. On June 7th of 2008, my slice of Wisconsin was hit with a deluge of rain that backed up the storm drain in the alley behind my house, filled up my garage, totaled my car, rolled up the back yard and made itself comfy in my basement. It was a disaster beyond anything I'd ever imagined. I don't even live in a flood plain! As the water kept coming, my daughter and I salvaged what we could from the basement until I noticed that one of the electrical outlets was doing a terrific imitation of a kitchen faucet. After that, we went upstairs, stood out on the deck and watched kids in a canoe paddling down the alley. The damage to the area was catastrophic enough that in less than 48 hours, FEMA crews were out and about. It was referred to as "the hundred year flood," something that you only see once in a lifetime, if that.

Five days later, it happened again.

That time, secure in the knowledge that my kids were on high ground at the ex's house and that anything that I cared about in the basement that could be destroyed had already been destroyed, I played my guitar, goofed around on the computer, hung out with the dog, occasionally wandered down the basement steps to rescue anything that might be floating by and waited for the walls to collapse. (Luckily they didn't.) The next morning, I discovered that there were sections of my four foot tall chain link fence that were completely submerged. It took about three days for the water to be pumped out and away by city workers. (We won't even discuss the broken sump pump that I had to hit with a broom every ten or fifteen minutes day and night, or the endless squeegee-thons.) The clean up is still ongoing and my basement still looks like it was hit by a bomb.

So, of course when I started coughing in late June or early July, it had to be from mold in the drenched basement. If it wasn't that, it was a cold. Or maybe allergies. Nothing serious. And if I felt a little run down, well hey, wouldn't you?!

But then, I started having these breathless moments. Climbing stairs took on a new level of difficulty. Lifting cases of soda at work took a lot more effort than they should have, given that the clean up should have added muscle, not taken it away. Strangest of all, my right arm started to hurt when I let it hang down naturally. I mean, really hurt. A web search of my list of symptoms made me laugh out loud. It indicated lung cancer. How silly is that? I don't smoke!

Well, I don't!

On August 1st, I'd had enough. After all, if I had fungus growing in my lungs or something, maybe it was worth checking out. To illustrate how un-sickly a person I am, my call to the doctor's office involved a data bank search and the news that my doctor had left the firm three years ago. However, they got me in pretty quickly to see a physician's assistant.

She was nice. Asked a few questions. Agreed that on a scale of 1-10 my cough was a 78.4. Bronchitis, she guessed, or maybe pneumonia. It's not like I had a fever or anything. It's not like I was really sick. I was still going to work every day, right? No fever, right? So, she gave me a five day course of heavy-duty antibiotics, an inhaler, some pills for the cough and sent me on my way.

I cannot remember if she ever listened to my chest. I know that she never ordered an x-ray. It never even came up in conversation.

On August 8th, on the verge of a long planned vacation, I called back to the doctor's office and talked to their "Triage Nurse." I explained, between coughs, that I'd taken the antibiotics but I was feeling worse. Could I, I wondered, still make the trip to Pennsylvania or . . .

"Oh yes, go," she told me. "You have to give the drugs time to work. It's only been a few days, so go and enjoy yourself."

So, I did. Coughing all the way and probably scaring a few close friends and family members with my spectacular hack-a-thons. My folks offered to send me to their doctor, but I declined, for no good reason. Looking back, I can admit that I was literally dying on my feet, but y'know, I didn't want to be a bother or anything.

On the way back, I blacked out briefly while driving through Chicago. Not optimal. But, I had to work the next day, so I soldiered on, made it home, wheezed through a long night, went to work as planned, and immediately afterward drove myself to the local Urgent Care Clinic, coughing and breathless and wobbling apologetically. "I can't get any air," I wheezed by way of introduction. Urgent Care upgraded me to the Emergency Room. Stat.

The doctor on duty was a nice guy, short cropped hair and professionally courteous without being stodgy. He listened to me huff out my history and hauled out his stethoscope. Deep breaths, he said, listening to my back. I did my best. Then he moved around to the front. Deep breaths, he said again. Again, I did my best.

After a moment, he took the stethoscope away with a puzzled look, disassembled it, reassembled it and tried again. Deep breaths.

"I think we need an x-ray," he finally mumbled. Twenty minutes later, we were standing in front of a computer screen looking at the results. Where my right lung was supposed to be, there was a white expanse of . . . stuff. The left lung, clear of debris, waved to me cheerily from the monitor. Of my heart, we could see maybe half.

In a state of shock not dissimilar to my own, the doctor admitted that he'd guessed I had a touch of pneumonia right up until he tried to listen to the right hand side of my chest and . . . heard absolutely nothing.

Nothing at all.

Blood(thinners), Sweat and Tears

2009-01-19T21:24:00.003-06:00

This post isn't exactly about cancer, but since you can trace the causes directly back to it, I reckon it's fair game.

Here's the deal. I have this tumor in my chest. (Anterior mediastinal mass, for the lymphoma-fluent among us.) It's pretty well reduced as I type, but at its peak, it was big enough to substantially interfere with little things like . . .oh, breathing. And circulation.

Somewhere between the discovery of the tumor and its eventual identification, I came down with, quite literally, a massive pain in the neck.

During the first days of my hospitalization, I remember sitting on a gurney and wincing as a technician ran an ultrasound probe over the ouchiest area on the left side of my throat.

"See anything?" I asked innocently.

"Oh yeah," she answered. "You've got a really big blood clot in your jugular vein."

Oh. Dear.

"Sooo," I tried to be nonchalant. "Stroke? Heart attack?"

"Oh, don't worry about anything like that," she reassured me. "It's not an artery. It's a vein."

"Really? That's goo--"

"If it moves, it'll just go into your lungs," she said brightly.

"Oh, okay. Whew." Wait. What?!

Thus began my relationship with blood thinners; the better to let the clot dissipate, my dear. Initially, "Fragmin" (dalteparin) was the treatment du jour. It's a dandy little drug, with only two disadvantages for yours truly. First of all, it's an injection. In your gut. A nuisance in the hospital, but even less fun when you're the lucky person on both ends of the syringe. Twice a day. You could play connect the dots on the bruises, trust me.

Secondly, there was a teensy financial issue. When a drug is going to cost seven hundred dollars a month after insurance pays their share, and you're not currently working for your living, it's time to seek out alternatives. And so, after groveling to my nice doctor, I was switched to warfarin pills. Warfarin is a much cheaper alternative, but taking it necessitates trundling to the local hospital every few weeks for lab work and dosage adjustments.

Problem: Warfarin makes me feel cold. Really cold. It's not an uncommon side effect and I daresay if we were smack dab in the good old summertime, I wouldn't mind. When I woke up last Friday morning, it was -19 outside. Farenheit. Sheesh. I'm not a thermostat freak, but the warmest it ever gets in the house is 68 degrees. 64 at night. To my diluted O-positive, that's downright frosty.

Solution: Dress more warmly, you say, and indeed I do. I believe in the power of layers. I have a large collection of hoodies and I always keep a warm hat nearby. Despite that, I still get the shakes periodically and have to run for a hot shower before hypothermia sets in.

Problem: There's another little condition that cropped up after a few chemo treatments.

It's called menopause.

As my doctor sympathetically explained, my body is so discombobulated from the chemotherapy that not even my ovaries know what they're supposed to be doing. I am now the proud owner of raging hot flashes. Oh, the joy!

Now a hot flash, for the uninitiated, is like being broadsided by a riptide of unbearable equatorial rainforest-type heat that instantly wrenches sweat out of every single pore in your body. It lasts for a duration of perhaps a few minutes and then it goes away, leaving you drenched and, in some cases, with your face jammed into the inner recesses of your refrigerator. I personally experience hot flashes at least a few times every hour. Sometimes, it's five or six times an hour. (And then the children can huddle around me for warmth.)

You'd think that my shivery warfarin chills and my inferno-esque flashes would cancel each other out, wouldn't you? In a just world, I should be able to exist in the not-too-hot and not-too-cold internal temperature equivalent of Baby Bear's porridge bowl. Ha.

Imagine, if you will, the experience of trying to sleep by huddling your pathetic frozen carcass under two blankets, a comforter and snuggled up next to a convenient greyhound. Gradually you start to feel marginally comfy and drift off to blissful sleep . . . only to wake up to a clanging internal alarm that indicates that steam is coming out of your ears, and makes a convincing argument at two in the morning that spontaneous combustion might be more than just an urban legend.

Instantly, you kick out from under the blankets and shove the dog off the bed*, but it's too late. You're soaked. I mean, soaked. Not just you, but everything you happen to be wearing. Also the pillowcase. And the sheets. Yuck. And just as soon as you notice how disgustingly damp you are, the flash is gone and you have leaped from Amazon humidity into Arctic permafrost.

The experienced sufferer will keep, at minimum, two fresh changes of jammies and a towel within arm's reach. Pillowcases are optional, but only because there is probably not a linen closet in the world that can keep up with a night's worth of flash 'n freeze.

It's enough to make me downright grumpy.

Oh, and according to the doctor, there's a 50/50 chance that with the cessation of chemo, I'll leave the land of menopause and resume the traditional lifestyle, as it were. If so, guess what I can look forward to in about ten years? Well, maybe I won't be on the warfarin by then.

But I bet it'll be in July.

*No greyhounds were harmed during the writing of this blog. And no, I didn't actually shove one off the bed. They're far too heavy.

The Wall

2009-01-11T14:42:00.001-06:00

I've got to be honest. The last round of chemotherapy I had was the toughest of them all. It wasn't that driving snowy-icy roads in the dark for over an hour to get to the hospital on time had me frazzled. (Although they did. The car even tried to break down on the way home!) It wasn't that not getting enough to eat that morning caused some nausea issues, which in turn led to my first mouth sore since treatment #1. It wasn't that I felt sicker and more tired afterward than any other post-chemo experience. It wasn't even that it was two days before Christmas and I hadn't wrapped the presents yet.

I just . . . didn't want to do this anymore.

I don't want to do this anymore.

I mentioned it to my best friend Janet, and she said simply, "You've hit the Wall."

You see, Janet has another friend with cancer; a friend who has had more difficulties than I have. It was that friend who told her about the wall and warned that I would be running into it sooner or later. Janet, bless her heart, was on the alert and her advice came straight from a veteran on the front lines of another battle.

I'm not paraphrasing by much when I quote:

"You've hit the Wall. You want to quit. You can't."

It seems like a no-brainer. It really does. If there is any cancer patient in the world who undergoes a chemo treatment and says, "Thank you sir, may I have another?" that, my friends, is a cancer patient residing in a psych ward somewhere. Of course, you still go to the next treatment, and the next. You have the surgery, undergo radiation, learn how to pop pills as though you are solely responsible for keeping the kids of pharmaceutical company employees from starving. You hold your arm obediently out for every needle stick. You learn how to style a wig. You do what you need to do. Of course you do.

Except for the times when you don't.

It's when you hit the Wall that treatments and regimens and indignities you took for granted as necessary evils on the road to remission become . . . negotiable. The shallower part of your survival instinct points out that not only is chemo not fun, it's actively bad for you. Maybe . . . just maybe, you've had enough. Maybe the worst won't happen. And even if it does, you whisper to yourself, it can't be worse than this. Can it?

Part of my problem is that there are always a few wonderful days between chemo treatments when I feel very good. At the tail end of those few weeks of respite between chemo sessions, there's no queasiness, no exhaustion, no lingering unwellness, just the sweet solace of normality. Those are the days when I've developed a resistance to the idea of submitting myself to the next episode of feeling like something best scraped off the bottom of a shoe. I like normality. Intellectually, I know that those good days might just represent the eye of the hurricane, but by golly, it is soooo very tempting to consider that they might, in fact, represent happily ever after, if only I stopped right here.

A few months ago, after my last CT Scan showed marked improvement, my doctor and I discussed the probability of my moving on to radiation sooner rather than later. I thought it was curious when she commented that radiation was an option that I could refuse if I wished, but that having come so far, it would be hard to understand if I decided against it. At the time, I thought it would be hard to understand too!

But now, as I lean against the Wall and consider climbing over it and slogging ever-onward, I can see the other side of the equation. I can see why some people just up and quit, sometimes only changing their minds when it's too late, sometimes never changing their minds at all. I can see the attraction of quitting. I know, beyond any shadow of doubt, that if my next scan indicates a need for more chemotherapy, I will be absolutely crushed.

My only advantage is that despite my increasing antipathy, I have people in my support group who aren't going to take my "no more" for an answer. I might want to quit, I might even try to quit, but I have friends and family who will, without hesitation or remorse, boost me up and over the Wall despite my kicking and screaming. At gunpoint if necessary. Some of the equestrian types even own whips!

I can't promise not to resent the heck out of them. I can't promise a cooperative sunny attitude or a can-do philosophy where none might exist. Just because I seldom exhibit a bad attitude doesn't mean I'm incapable of one. To the contrary, I can be just as ugly tempered as the last shark to a feeding frenzy. I give fair warning.

But, I know this:

If chemotherapy is still in my future, or the inevitable radiation yanks the rug out from under me and I hit the Wall again and want to quit . . .

I can't.

So, thanks in advance.

Odor Ordeal

2009-01-03T15:41:00.005-06:00

I don't smell like me anymore.

Now let me be clear about this. I am a reasonably hygienic individual. I shower daily. I use deodorant, brush my teeth and try to ensure that noses do not automatically wrinkle in my presence. But everyone has their own specific scent. Not to be indelicate, but even when you toot, you know darned well it's you. You can fool your family and blame it on the dog, but it's still you. Your own personal aroma, for foul or fair.

Not anymore.

When your veins are loaded with the chemotherapy concoction, things change. You taste it in your mouth. You burp it. You fart it. It's as though someone else has moved into your body and you'd really like to issue them some mouthwash, bubble bath and a loofa because obviously they have no clue.

You offend yourself.

At least, I offend myself. I'm reasonably sure I occasionally offend my children, although they're too polite to say so. Geeze, even the dog looks at me in a funny way. Periodically, he wanders over to be introduced.

So in a weird way, I am constantly trying to compensate. I have become obsessed with things that smell good.

My hot water bill is undoubtedly skyrocketing, as I lather and rinse and re-lather with body wash and shampoo. (Yes, I still use shampoo.) I tend to favor homey smells like almond or vanilla, nothing too floral and definitely nothing in a citrus vein. I don't just bathe in the stuff. I marinate. I want it to soak into my pores and force out the nastiness. (This is admittedly ridiculous. I know chemo is my friend in the white hat I just wish he smelled better!)

Some nights I make a cup of hot cocoa and spend more time inhaling the velvety chocolate steam than actually drinking it. Coffee holds a similar attraction, especially the fancy-pants gourmet stuff. Highlander Grogg is a personal favorite in the scent department.

I go into gift shops just to whiff the potpourri. I make liberal use of my Glade brand Apples/Cinnamon room freshening spray at home. One of the best Christmas gifts I received this year? An amber scented candle. It sits on my desk and makes me happy, even unlit.

There's talk, certainly hope, that I've had my last round of chemo. That six treatments might have been enough. I really hope that's the case, because the longer it goes, the more I don't like me. It's nothing personal. I just stink.

Christmas Message

2008-12-24T19:43:00.005-06:00

I've been remiss in not posting for a while. Ah, Christmas is a wonderful time, but some of us get rather disorganized throughout the run-up and I am one of those people. Check your dictionary under the word, "procrastinate," and my cheery-yet-frantic face will be staring up at you. Well, maybe not, but it should be.

Among other deficits this year, I've not sent out any Christmas cards. Yet, I have many friends and a great many blessings to be thankful for this holiday season. The list will not be complete, but it's a start. I know some of those it mentions will read this, and so, this is my message to them. Or to you, as the case might be.

C & J - My children. They haven't just grown up over the past months, they've stepped up and taken over many tasks without complaint. They've weathered a storm that they did not deserve to endure and they've done it with poise, humor and grace. My love to them, now and always.

My Parents - Imagine, if you will, the stress of having both of your children fall seriously ill at the same time. Now imagine that one of them lives hundreds of miles away and you've got yourself quite a conflict. That was some really out-of-control sibling rivalry, if I do say so myself! Mother and Dad, thank you for your indomitable and unquestionable love, your faith, your generosity and your many, many prayers on my behalf. I couldn't have gotten this far without you. No way.

Janet - For being the ultra-capable surrogate Mom to my kids when I couldn't be there, and for taking care of me without question or complaint–even to the point of running to McDonalds when cheeseburgers were the only things I thought I could possibly eat–I am forever in your debt. For offering your shoulder to lean on, a readily available sympathetic ear and those swift kicks in the butt; and for your wisdom in knowing which was necessary at any given time, I thank you. I will never take a bath again without pondering the necessity of flotation devices. You are family to me.

Mindy - A new friend, but possibly a long lost sibling. Our minds are too eerily similar to suspect anything other than genetic manipulation by aliens. I thank you for your understanding, your phone calls, for the little *cough* something that I'm not going to mention here, but you know darned well what I'm talking about, and for having the wit and wisdom to be practical and forthright at all times. Thank you.

Cody - For Courage. Made me cry, you little scamp!

Boyd - Another new-ish friend, but a lifer to be sure. Thank you for being so incredibly concerned, yet respecting my need for privacy and my bit of admitted self-centeredness during the worst days after the diagnosis. I know how hard it must have been for you to stay away. My wish for you this Christmas is that you'll somehow find the time to write your novel. It's a good one. I ought to know.

Lou - For phone calls, chauffeur services, talismans and tough talking. My hat is off to you, ma'am, and I don't take the hat off for just anybody!

Caledonia Presbyterian Church - some day I'll get around to thanking the pastor and congregation properly. The circle of love that's been wrapped around myself and my children has been a blessing beyond compare. From this small congregation, mighty things have been done, many bills have been paid, many meals have been delivered and they sing a mighty fine selection of carols in sub-zero temperatures too. The Lord is my comfort and He works through such as these.

Members of the Wisconsin Regional Writers Association, Pauquette Wordcrafters, Writers at the Portage and my friends from Norbert Blei's classes (including Norb himself, of course!) - for food, for letters, for phone calls, for monetary support, for prayers and encouragement. Writers tend to be somewhat insular in nature, yet the friendships I've made in this community are amazing and humbling.

Members from Greyhound Pets of America-Wisconsin (Especially Ginny, Ellen and the "anonymous" donors.) Although it might seem bizarre to the non-animal lover, one of my greatest fears in those first very bad days was the growing conviction that I wouldn't be able to financially or physically support Simon, my nine year old greyhound, throughout my treatment. Simon is my ever-present comfort, my "heart-dog," if you will. When I relayed my condition on the GPA-WI forum, the response was both unforeseen and incredible. Through the care and donations from GPA-WI members, Simon had food delivered, his nails trimmed and a collection was taken up for a much needed dental and a biopsy for a lump on his leg–including transportation to and from the vet's office. It was a large bill and it was completely covered. Words cannot express my gratitude. Simon sleeps beside me every night and watches over me through some pretty long days. He is an exceptional friend and I thank you all for the gift of being able to keep him with me.

The Mutant Reviewers From Hell - My movie reviewing friends and comrades. After the floods of June 2008, they came together and sent a care package and financial support. (I still have the pirate rubber ducky on my desk.) After the August diagnosis, they rallied around me again and continue to do so. I am so grateful to be a part of the Mutant Reviewers. I am so grateful for their friendship. I am so grateful that they haven't decided that I'm totally jinxed and voted me off the island. I love you guys! I really do.

My Friends at Interstate BP-Amoco - For phone calls, car maintenance, money in the jar, goody bags and visits to the bald shut-in. Special thanks to my boss, Bruce, for the two photo books which undoubtedly deserve a blog post all their own.

JoEllyn - It takes a special hair stylist to pull out the clippers and do what's got to be done. More than that, it takes a special friend. Thank you for everything you've done for me.

The Others - Anyone I haven't mentioned, and there are a great many of you. Thank you for being there, for caring, for praying, for lending aid, offering help, standing by for such time as you might be needed. Thank you all.

On Christmas morning, the kids and I will open presents, eat well, laugh, love and rejoice as we do every Christmas day. But no matter what I might find under the tree, nothing will compare to the gifts I've already received this year.

Merry Christmas to you all!

From The Front Lines: Rituxan and Vampires

2008-12-12T11:57:00.006-06:00

This was written on November 25th. I've only just gotten around to typing it into the computer. (Spiral bound notebooks are my friends.)

I'm writing this from a treatment room in the UW Carbone Cancer Center in Madison, Wisconsin. Actually, "room" is not the correct word. I'm in a bay. Bay #9, if I remember right. I've been given my assortment of pre-meds, which consisted today of Tylenol, Benadryl, Prednisone, Zofran and Emend. Yep, all of that and the chemo hasn't even started yet. Except for the prednisone, I guess. That is considered a chemo drug in my situation.

I'm hooked up to an IV drip, (I've been carrying the needle around in my arm for a few hours prior to this,) and I'm waiting primarily for the Benadryl to kick in so they can get the infusion started for real. Figure about a half an hour.

The first stop will be Rituxan, a monoclonal antibody that specifically attacks B cells. It seems to be a new treatment in the oncological arsenal, and from what I hear, it kicks butt. The inconvenience of it is that it takes for-flippin'-ever to administer because too fast an infusion can bring about some major allergic reactions. (Thus, the pre-emptive Benedryl.) The Rituxan alone figures to take about three hours. The rest of the drugs combined, probably around one hour.

I'm sitting in a reclining chair. It's the first time I've been assigned to one of these. I usually get a room with a bed because of the length of my treatment. I was a little disappointed really, because I like to nap and this chair is not staying reliably reclined and I don't particularly want to be ejected from it unawares. (On the other hand, that would lend some excitement and adventure to the nurses' lives.) But, it's busy today and they did give me a room with a television. Ironically, I've never exercised the television option during out-patient treatments. Inpatient was a different story, but they kept insisting on wheeling me off to do tests and lab work during Hogan's Heroes. What was up with that?

Eh, I really can't complain. Like I said, the ol' cancer center is a bustling place. Lots and lots of folks in various states of alopecia are being shuttled along the assembly line. I even saw one in handcuffs and a uniformed escort out in the waiting area. Anyway, one of the nurses mentioned that Tuesdays are the busy days, Monday not quite as much. Today is, indeed, Tuesday.

I haven't spoken to my "neighbors" nor they to me, but that's completely normal. Wandering around and being social is not optimal when everyone is hooked up to their own IV pole. Even in the waiting room, most patients stick tight to whoever brought them here. (I drove myself.) We're not unfriendly, just a bit self-absorbed.

The woman directly across from me is about my own age, maybe a year or two younger. Her cell phone rang a little while ago and I got a kick out of the nonchalant way she said to the caller, "Actually, I'm not in my office at the moment." No further explanation given.

Across the hall on a diagonal line is a patient who I can look at directly. If our chairs were on wheels, we'd be set up for a serious game of chicken. She's very young, early twenties, if that. She has long red hair in a ponytail. Most likely a newbie. I silently wish her well and I'm glad her sister is with her.

The decor in the bay is meant to be soothing, I'm sure. The walls are white but appear slightly yellow in a nicotine hue under the fluorescent lights. The floors look like hardwood–or possibly they're that fake stuff that just looks like hardwood. They're a pleasant rich honey shade. I like the floors in this hospital.

The upholstery on the furniture is a sort of subdued teal blue and the curtains covering the windows between the rooms are multicolored in a variegated geometric patterns–blues, greens and a sort of tangerine orange. They aren't as loud or obnoxious as my description might imply. I don't think I'd use those colors in my house though. Blue and orange haven't set well together in my mind since I had a bad meal at a Howard Johnson's when I was a kid. (They always put a cookie in their sherbet though. I remember the cookies with fondness.)

The bays with beds always have some sort of art print on at least one wall. Always scenery of some sort. Pastoral or garden-ish. The chair bay is smaller though. No art.

Rituxan started now. I have a blood pressure cuff secured to my right arm. It's set to go off every fifteen minutes. Standard procedure. I'm also supposed to let them know if I get itchy or short of breath. As this is the fifth cycle, I don't anticipate a problem.

My first stop this morning was to the lab to have blood drawn and the IV put in. That's also standard procedure. Today's vampire was a very pleasant lady, older than myself, who I think has possibly not been a vampire very long. Her first instinct was to use a vein in the back of my hand. I didn't exactly argue about it, but I did mention that I'd never had one put there before for chemo. You want a really good vein for chemotherapy.

She took no offense, but willingly expanded her search for a more northerly drilling site.

For long minutes, she palpated, heated-packed and palpated some more, trying to find the mother lode. Once she'd decided on a promising location, she took even more time to assemble everything she thought she'd need for the procedure. And then we were back to the heating and palpating again. Finally, she screwed up her courage, made the jab and . . . missed.

This didn't excite me at all. Hey, I'm a notoriously hard stick. I have shy veins that like to roll away from sharp objects. The record is five pokes and that was when I was inpatient.

So, since I was already punctured, the nice vampire lady went looking for that elusive vein with the needle. She tried going up, she tried going down, she went left and right, trying to catch that sucker and spear it like a sturgeon.

Then she hit a nerve and that, my friends, was quite enough. When I say, "ouch!" I mean it.

Distraught, she apologized to me. I, in return, apologized to her. It's not her fault my veins have mad Jedi skillz. I honestly felt a lot worse for her than I did for me. She called in another technician to take over the job. Same vein, but a little higher.

Technician number two . . . also missed.

During all of this, probably three or four patients had rotated through the other chairs.

Now, I can't say I was jumping for joy and clicking my heels over two bad sticks, but a small part of me was actually relieved that the second tech, a far more poised and confident individual, couldn't get it either. I really felt bad for the first tech. She tried so hard.

Tech 2 did her best, but finally looked up and said, "We need Vlad."

Enter Tech 3.

Vlad isn't her real name, of course. I made it up. It probably should be her real name though.

Duly summoned, Tech 3 strode over, flipped my arm off the side of the chair so that it was dangling out in space, picked her spot and had that sucker in there before the words, "little poke now," hit my ears. Dang. I was impressed!

They got the blood they needed, used some gaudy purple self-adhesive bandage to secure the IV gizmo to my arm, and sent me on my way.

Anyway, I'm going to stop here for today. Benadryl always makes me abominably sleepy and I really want to get a nap in before rituxan finishes up and the nurse comes in to do the other drugs.

I just hope the chair cooperates.

Postscript: The chair cooperated.

So, how's that working out for you?

2008-12-09T15:51:00.002-06:00

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.

All Dogs Go To Heaven

2008-12-05T19:21:00.004-06:00

When I bought my house, (with generous aid from my parents, to be honest,) it seemed pretty well perfect. A well-kept block of homes, easy walking distance to the center of the small town I live in, a fenced yard and a property that was large enough for a family of three without being too much for one person to maintain. After all, the kids will move out someday. I think.

I didn't expect any trouble, but trouble was what I got. Within a month of moving in, the trees had been T.P.'d and some cute prankster had turned on the outside water faucet while I was at work; a water bill I would not care to repeat. Worse than that, I began to suspect that at least one neighborhood urchin had a key to the front door. Nothing ever disappeared from the inner sanctum of hearth and home, but when you come home to a door that is–shall we say–ajar more than once, you have to chalk it up to something other than sheer forgetfulness or poltergeist activity.

I had the locks changed, but that didn't resolve the feeling of danger or fear of invasion. Believe me, it's no joke for someone of my nature, (cowardly) and stature (wimpy) to go from room to room, checking closets and the basement for an interloper. When the kids were here, it was easier to tap into the bravery gene. Mother's instinct and all that jazz. But on the days and nights when they stayed with their father, my cute little house seemed a lot less welcoming. The neighborhood seemed a lot more hostile. And lacking a significant other, I decided to do the next best thing.

Time to get a dog.

For years and years, I'd had a fascination for whippets. As a teenager, I'd briefly worked for a woman who had a few. They were sleek and athletic looking, but generally quiet and companionable. Whippets, however, are prohibitively expensive for the convenience store flunky budget. My fantasy of eventually becoming the crazy old whippet lady of Portage was not to be realized.

Besides, in the matter of deterrence, I had criteria that needed to be met by my prospective canine companion.

1. I wanted it to be large.

2. I wanted it to be good natured. After all, I had kids of my own. Cujo need not apply.

3. I wanted it to have a nice big bark.

With that sleek whippety silhouette in mind, I web-searched out greyhounds and hit the mother lode. Wisconsin had a few active greyhound racetracks and therefore there was a ready supply of retired hounds needing to find couches to call their own. I did some research and found pretty much everything I was hoping for in the breed description – including the good news that greyhounds are not heavy shedders by any stretch of the imagination. Bonus!

I sent in an application to the Wisconsin chapter of Greyhound Pets of America and waited. This led to a home visit by two group representatives and a humongous boy-hound with a cast on his leg. The reps were actually a little nervous because poor Red's injury had brought him off the track only a short time ago and he was still new to the idea of house breaking. Despite this, he was friendly, happy and very quiet. Though he was not destined to be ours, I was sold on the breed.

Relying on the expertise of Becky, the adoption rep I worked most closely with, I let her choose the greyhound that she felt would be right for us. Dressed to the nines and late for a Christmas party, she dropped off . . . well, she dropped off the anti-Red. It was brindle. It was wild. Its name was apparently Kurt.

Within two minutes of entering our little family circle, Kurt promptly counter-surfed across the stove top, then ran down the hallway and decided to try out the bathtub. (That was the first and last time he ever jumped in voluntarily.) I swear Becky's SUV left skid marks on the street while she was making her getaway.

She and I still laugh about that.

Not particularly liking the name Kurt, and since he didn't respond to it anyway, I renamed our new hound Simon. Over the course of the next few weeks, he growled at the kids, snapped at yours truly, shedded like a yak in spring thaw and steadfastly refused to bark at anyone who wasn't small, squeaky or featured on Animal Planet.

Simon and I came to an understanding. Eventually. In fact, these days he is my shadow, my constant companion and an immense source of comfort during those sleepless nights when the brain just won't quit chewing over problems which certainly can't be resolved at 3am. Sometimes you just need to hug your dog.

Anyway, because greyhounds are like potato chips – you can't stop at just one - I began fostering other greyhounds for GPA-WI. Fostering offered Simon, (who at the time had developed a hint of separation anxiety when the hand-that-fed went to work,) some fraternal companionship. It was also a nice non-commitment way for us to find out for ourselves whether the household was big enough to contain two greyhounds.

First was Lonnie, a sweet three year old girl who was fresh off the track, yet smart enough to discover that a greyhound can fit very nicely into the big blue recliner in the living room. Simon, clearly impressed, quickly followed her example. The recliner has been Simon's turf ever since. I get a folding chair.

The next foster was Lucky, a sweet old girl who sure never lived up to her name. Her health problems were legion, up to and including a missing toe. She was an exercise in patience and somewhat eroded veterinary-related skills on my part. She also knew how to smile, the only greyhound I've hosted who could do that. Past nine years old and special needs, I was under the impression that she was a lifer as a foster, but she was adopted by a woman who fell in love with her hard-luck story. I was sorry to see my Lucky girl go, and devastated a few years later when I learned that she'd died. Of cancer.

We had a short term foster dog after that, a perfectly amiable fellow named Johnny, who occasionally and without provocation launched into poor Simon with snarls and teeth. To this day, Simon has the scars from Johnny's assertion of male domination. I wasn't unhappy to deliver him to his adoptive home.

And then came Flower.

After Lucky, I didn't think I'd ever run across a more needy foster hound, but Flower was the embodiment of neediness. My understanding is that Flower and another greyhound, were owned in Texas by a person who, for health reasons, could no longer take care of them. After an undetermined span of time of living with sub-standard care, they were shipped to Wisconsin with a load of chihuahuas. The recipient was expecting the little dogs, but not the large ones. When the new owner attempted to send the greyhounds to the local humane society, GPA-WI was called and Flower eventually ended up with me.

She smelled just about as bad as a dog can smell. Her ears were full of gunk. She was wormy. She was thin. She was absolutely terrified and completely disoriented. But my God, she was so sweet. During her first full day with us, she guiltily crept up onto the couch–she clearly remembered couches–and stayed there for the next week, leaving it only to eat or to go outside and do her business. She seemed, if I can anthropomorphize a bit, to be of the opinion that the couch might disappear if she didn't maintain her vigil.

She broke my heart.

Eventually she learned that the couch was a permanent fixture in the house. She learned that food was ample and that cuddles were freely given and lovingly received. She discovered our crate full of dog toys, and as though she thought she was doing something naughty, she played only when she thought no one was looking. But she did play, her half-amputated tail a helicopter rotor of delight that threatened to lift her right off the ground. She snuggled and wiggled and loved us as strongly and fiercely as a dog can possibly love anyone.

The inevitable call came, just before Christmas, that a family had indicated some interest in Flower with an intent to adopt her. I spent one sleepless night watching the lights flicker and dance on our somewhat dilapidated Christmas tree. I studied the back end of a fuzzy squeaky toy that had somehow been ballistically and enthusiastically lodged in the upper branches.

I sat on the couch with Simon at my feet and a blissfully sleeping Flower beside me, her head pillowed on my lap.

I thought about sending her to a home that undoubtedly offered more than our measly little one-income, low-income household ever could. I thought about sending her away from the couch, from security. And while I know, to this day, that she would have adapted, it was not within me to strip her security away ever again. Not for any reason.

I called the adoption coordinator and made Flower an official part of the family.

She bloomed with us. She adored the kids and worshipped the ground Simon walked on. Not exactly a canine Einstein, she was silly and goofy and sometimes downright dumb. She crept up onto my bed every night and displayed no respect for personal space. Often I would wake up and find a paw draped chokingly across my neck or feel greyhound snot being lovingly dribbled into my ear. You couldn't get mad at her because she was so sweet and clueless. She was even mugged by a squirrel once.

We had her for almost three years of unconditional love.

In September of 2007, my daughter and I held Flower and loved her as a veterinarian administered a fatal dose of barbiturates. Flower did not want to go.

I will never, ever forget that she did not want to go.

To this day, I have to remind myself that the decision I made was made out of compassion and a desire to spare her prolonged misery from an out of control, wickedly suppurating tumor. I have to remember that her fate that would have been no different if we'd put her through more surgery or treatments. We could have kept her a little while longer, but at an unfair cost to her.

Cancer again.

How ironic is that?

The sappy anthropomorphics among us like to talk about the Rainbow Bridge, a pathway to the Other Side, where our dearly departed pets wait for us to join them. I believe in Heaven, I don't know if I believe in the Rainbow Bridge.

But when I think of Flower these days, I see her on a grassy lawn, patting her front paws wildly up and down in her distinctive dance of joy. She looks young. Not a puppy, but there's no tell-tale white of aging on her face. Her tail gyrates wildly and she looks up at me with absolute delight that I am still paying attention to her, still loving her, not ever forgetting her.

I am, in many ways, a practical person. The image I have of Flower dancing on that green grass is not something I would intentionally fabricate. I'm good at guilt. I hold it tight and I don't let go of it. I don't ever try to duck it, or make light of it. I wallow in it. I marinate in it.

But Flower simply came. And when my thoughts turn toward her, she is still there, still delighted and still loving me.

It's enough to make you believe in the Rainbow Bridge.

Down To The Marrow

2008-12-04T11:47:00.005-06:00

It had to happen. By the fifth chemotherapy treatment, I came to a point where my white blood cells just weren't bouncing back as enthusiastically as they ought. Neutropenia wasn't exactly a new story for me, but this was the first time my doctor decided that I needed to go one step further than simply wearing a charmingly fashionable surgical mask while out in public. It was time for "the shot".

It's a drug called Neulasta, (pegfilgrastim) and if you watch TV, you've probably seen the ad for it. It features a strikingly attractive African American lady with close cropped gray hair, wielding a paint smeared pallet and a brush. A lady of the arts, perhaps an intellectual, the sort of lady you'd quite like to be friends with. And oh my goodness, she has cancer. The catch phrase is, "Are you ready to start chemotherapy?" She is. Yes indeed. She's got her Neulasta. You just know she's going to make it. I mean, I was inspired when I first saw the ad, and that was long before I was diagnosed.

When you think about it, Neulasta has sort of a nice ring to it. New-last-ah. Good syllables. Solid, reassuring, sort of upbeat. You can dance to it.

In a nutshell, Neulasta gives your immune system a jump-start by helping boost the production of white blood cells–or neutrophils–with which to fight off infections. As with many drugs, there are risks of various icky side effects, (ruptured spleen anyone?) but the most common by far is, "mild to moderate bone pain." The Neulasta website claims 31% of patients experience it. Other medical advice sites claim up to 57%.

Naturally, a need for Neulasta wasn't exactly the news I wanted to hear two days before Thanksgiving, but the doctor quickly reassured me on that point. Side effects usually take several days before they reveal themselves, so I could enjoy my turkey and stuffing in serenity. Well, unless the chemo itself made me sick, of course, but you can't have everything.

So, on November 26th, I dutifully drove myself to the local hospital and presented my arm for puncture. It's a slowly administered shot. It also stings like an irritated nest of hornets. Still, no pain, no gain, right?

On November 27th, I did indeed enjoy my turkey and stuffing. Okay, I popped a few Compazines to keep the chemo effects at bay, but no problem. I even had pie!

Throughout the long holiday weekend, I lived in a state of vague anxiety, waiting to experience my share of "mild to moderate" bone pain. I mean, what is bone pain anyway? Seriously, how bad could it be?

By Monday, I was breathing a smug sigh of relief. Let's hear it for being one of the lucky 69! Or 43! Or whatever! Yippee!

When I woke up on Tuesday morning, my feet hurt. My feet.

Throughout the course of the day, the pain spread. And spread. And spread some more. I mentioned it to a late-morning caller who asked what it felt like. A whole-body migraine, I answered with perfect truth.

It got worse.

If you've ever hit your thumb with a hammer, (or slammed your hand in a car door, or given birth without an epidural,) you might have some reference point from which to understand the intensity of my experience with *cough* moderate *cough* bone pain. You know how it is in those first moments after an intimate encounter between hammer and thumb? You clutch and cradle your hand between your knees. You hiss profanity between your teeth in an uncannily accurate imitation of Yosemite Sam. You might hop up and down or sway side to side or simply stand in a paralytic stupor of pain. It hurts so bad that your teeth sweat. And all the time, your thumb is throbbing. Throbbing. Throbbing in an exquisitely excruciating crescendo of intolerable agony.

Are you with me here?

Okay, now imagine that every bone in your entire body is a hammer-struck thumb.

During the worst of it, as I huddled under my blankets, passing the time by counting my pulse via the thudding in my clavicles, my darling daughter meandered in and gave me a critical once-over.

"Have you considered a body cast?" she asked with raised brow.
"Can't writhe in a body cast," I grated. It was a writhing kind of day.
"Hmm. Then I have to recommend a clinically induced coma," she stated firmly and headed for the kitchen to make me a cup of hot chocolate.

I think she's seen too many episodes of House, but I have to admit, it wasn't a bad suggestion.

I called my best friend at work and pitifully snurfled my tale of woe and presumed osteo-implosion. It's pretty unusual for me to whine about anything cancer related, so she took my clenched-jaw griping with the gravity which it undoubtedly deserved.

"Try a hot bath."
"I honestly don't know if I'd be able to climb back out of the tub," I mourned.
"So just keep adding hot water," she shot straight back, waited a thoughtful beat, then added, "and don't fall asleep."

Your femurs probably aren't supposed to hurt when you laugh.

Over the course of the next twenty-four hours, it did gradually get better. By last night, it was almost a memory, although once in a while I'd experience a full-body cringe when the ribs or vertebrae thumped at me in a reproachful sort of way. This morning, I feel practically normal. For a given value of normal, of course. At least I can sit in a chair without wishing for an out-of-body experience.

I don't want to disparage the makers of Neulasta. By golly, I know they worked really hard on it and it's a dandy little gem of a drug, no doubt! Love that name! Good syllables, like I said.

Nor do I want to discourage anyone from getting it if their doctor recommends it. Thank God, for Neulasta, say I. If it helps, it helps, even if it hurts. Let my white blood cells be fruitful and multiply. Go, you wild little neutrophils, go!

But I have to admit, I'm not sure I want to be friends with that nice artsy lady in the commercial anymore. Although I certainly wish her the best.

The Matron And Me

2008-11-30T13:59:00.004-06:00

My daughter decided, very belatedly, that she wanted to go to the school homecoming dance. She borrowed a dress and looked gorgeous in it. (My daughter did not inherit her mother's lack-of-attractiveness.) But, as always happens in a case like this, there was a vital part missing from the ensemble and a trip to the store was necessary. Well, what's a mom to do?

I slapped on a baseball cap, gathered up the car keys and drove her to the "Insert Syllable Here-Mart". Yes, I know the 'Marts are endangering the small business owner and are a blight upon the face of the universe, but cut me some slack, okay? We went in, wandered through the aisles and found the necessary accessory, though we were not sure on the size needed.

So, off to the dressing room we went.

The Matron of the dressing room–possibly a retired prison warden, or maybe just a former accountant–carefully double checked my daughter's count of "three" items and indicated an available changing room.

"Want me to come with?" I casually asked.

"Sure," daughter replied. It's a girl thing, you know. Sometimes you need that second opinion.

Two steps later, the Matron blocked my path. Her eyes glowed with simmering disdain building into complete outrage and her mouth opened to cut me to pieces with I-don't-know-what, but then, she looked down. At my purse. Her eyes lingered for a second and she stepped back with a grunted, "Hmph. Okay then." And I was allowed to pass the sacred portal.

As my daughter tried things on and debated in the non-stop chattering way of teenage girls everywhere, I sat on the dressing room's benchlet in stunned silence. The thought kept repeating itself in my head. She thought you were a guy. She really thought you were a guy. Going into a woman's changing room. With a fifteen year old girl!

Crap on a biscuit!

I swung between hilarity and indignation. Did the Matron think I was a teenage boyfriend? (In which case, some latitude could be given. Heck, gender aside, it's been a long time since I've been mistaken for a kid!) Or did she think I was a forty-year old pervert?

Had my voice dropped a few octaves while I wasn't paying attention?

What if I hadn't been carrying my purse? I don't always.

What would I say to her when we went back out? Should I try something witty? Something cutting? Something dismissive? Should I thank her for protecting my daughter's virtue? Offer a recommendation for a decent optometrist? Should I lash out or extend the hand of friendship?

When we went out, the Matron was gone.

In retrospect, I'd like to think that she was as embarrassed as I was and beat a retreat because . . . I mean, what can you say in a case like that?

In retrospect, I'd like to think that I'd have let the unintended insult pass with good humor and the embarrassed smile of an almost-joke shared.

I'd like to think that I would not have used the occasion to let pent up fear and anger coalesce into a deadly beam of laser sharp hostility. I'd like to think I'm better than that.

In truth, I don't know what I would have done.

Follicle Follies

2008-11-29T15:37:00.007-06:00

Two of the chemicals that get pumped into the ol' mortal bits on a regular basis have, amongst other side effects, the ability to make your hair abandon ship. Hair loss, particularly on a woman, is really the defining sign of the condition. I've received enough funny looks that I'm considering the addition to a "Yes, it's cancer doggone it!" sweatshirt to my regularly worn, "Cancer Sucks," baseball cap. It's a nice cap really; army green with green print. It's subtle enough that you have to work to read it, which makes me feel better about sporting a chapeau that uses a word that I discourage in my own kids.

But I digress.

A question that comes up in the mind of the non-informed regards the extent of the actual defoliation. A friend, on the phone, stammered and stuttered his way through the inquiry, with the air of one expecting a quick and decisive end to aforementioned friendship. After all, it really is quite the personal question. The answer is: it depends.

It depends on exactly what chemicals you're getting and how your body reacts to them. Some folks lose what's on the noggin, some lose what's on the legs too, some lose the entire enchilada. Speaking for myself, some of the hair has wandered off into the sunset, some decided to stick around, and most of what's left seems to be in a holding pattern. My eyebrows have thinned out, as have the lashes. I've shaved my legs once in the past month. Pits are not a problem. Other parts–well that's really none of your beeswax.

However, the hair on my head . . . oh, the hair on my head.

It's always been my blessing and my curse to sport a plentitude of the stuff. For whatever reason, I have always had the sort of hair that most women want. Okay, the color was never anything to write into a love sonnet, but thick and lush and luxuriant about covers it. The downside is that it's always been so thick that there's not much anyone could ever do to tame it. At least not since the eighties when gel and mousse were all the rage. And, as I've gotten a little older and the gray started to sprout a little more, it was getting coarse as well as thick. Thus, for most of my life, I've kept it short. Really short.

Until two years ago.

Out of curiosity and the desire to surprise the heck out of my mom, I let the hair grow. And grow. And grow. Once in a while, I got the ends trimmed for the sake of neatness, but as of August 2008, it was past my shoulders and could have housed a colony of hummingbirds. I wanted to cut it short again, but was vetoed by my daughter and best friend.

Imagine, then, the irony of losing it the chemo way.

Three weeks into the treatment, I noticed a certain . . . lack of follicular anchorage. The brush needed to be cleaned after every few swipes. The tub drain resembled a large drowned rodent after every shower. So, I got it cut short; to about an inch and a half. It was cute, really. Sort of perky and fun. I liked it.

That lasted for about a week.

Then it was wholesale shedding. There was hair on my pillow, in my eyes, in my mouth when I woke up in the morning. My bath towel needed a good scrubbing with a lint roller after every shampoo. It was gross, I kid you not.

So, back to my hair-cutting friend I went. With great respect for the blood-thinner I was taking, she simply buzzed my 'do into stubble. No one wanted me to have a bleeding scalp wound, least of all me, so we decided amiably that stubble it would remain until it fell out on its own.

Five cycles into the chemo, it still hasn't fallen out.

When I take off my hat and look in the mirror, a prime candidate for the Marine Corps looks back at me. My daughter compares me to Bruce Willis. (Demi Moore? Natalie Portman? Sigourney Weaver? Nooooooo, I have to look like John Friggin' McClane crawling through the duct-work at Nakatomi Tower.)

This leads me to the question: if I'd just kept combing my hair, would I have ended up with a reasonable, if somewhat thinned out, thatch? Did the hair that couldn't be tamed decide to get the last laugh in? Do I hear a cosmic little voice shouting, "Psyche! Just kidding! We weren't all going to fall out! Gotcha!"

Probably. I'm sort of contrary at the best of times. Why shouldn't my hair be?

The Complicated and the Simple

2008-11-29T15:21:00.003-06:00

The complicated version is "Primary Mediastinal Diffuse Large B-Cell Lymphoma" (PMBCL). Slightly less complicated is the phrase: "Non-Hodgkins Lymphoma". The simplest term of all is "cancer".

The complicated version of my treatment regimen of the moment is: Rituximab, Cytoxan, Doxorubicin, Vincristine and Prednisone. Slightly less complicated is the acronym: R-CHOP. Simply put: "chemotherapy". Radiation will undoubtedly be a factor, but we're not there yet.

The complicated version is that I'm a forty-year old divorced mother of two teenaged kids. I have a full time job I'd like to get back to. I have a mortgage. I have hobbies, vocations and avocations. I have friends and family. I have responsibilities to myself and others. I'd like to think I have potential not yet realized.

Slightly less complicated is the phrase: I have quite a lot to live for.

Simply put: I don't actually want to die.

Elements and Intentions

2008-11-28T15:02:00.002-06:00

This is a different sort of story for me. It's a story without an easily definable beginning. This is a story that won't have an ending until after, (hopefully long after,) the writing of it is finished. It's a memoir-ish story, which is an odd change of pace for someone who vastly prefers fiction and generally reserves the real life snippets for things like copyrights and writing contests.

In some ways, this story is admittedly tragic. In many ways, it's comedic. There's a protagonist and an antagonist, both residing in the same space. There's a stellar cast of supporting characters. There's conflict, danger, tests of endurance, stiff upper lips, laughing in the face of danger and moments of true despair, self-doubt and the occasional whisper of panic. It's a story that might be interesting or might seem to be self-serving and thus a dreadful bore. The elements are all here. I hope I do them justice.

If it's cathartic for the author, I'd prefer it to be equally worthy to the reader and not a complete waste of time. I would be happy indeed, if it gives comfort or help to those who need it the most. No, I'm not just referring to those of us who wear the "cranky chemo" hats. We have families, friends and acquaintances who certainly also have emotions invested. They are welcome to read this too. In fact, everyone is welcome.

All I ask is that you bear with me for a while. Ask questions if you like, but understand that I don't have all the answers. I just have cancer.

Don't worry. It's not contagious.