Two Years...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two years. :)

YES!!!

Remission and Romeo?

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 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

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.

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

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?

The Complicated and the Simple

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

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.