Monday, December 19, 2011

Home for the Holidays

Shelly here, comin' atcha live from the banks of the Maumee River, in lovely northwestern OHIO! My four-person posse flew back yesterday. It feels Terrific to be home. Capital T.

In the last week, several friends who were feeling out of the loop with my health situation asked me for a "status update". So here's a very high level picture, in case you are curious, as well.

This past spring, I received radiation on my lung and liver to clear up the two teeny tiny remaining spots of cancer. We coasted through the year happily, assuming the radiation had worked. In August, we learned it had NOT worked, and the teeny tiny spots had grown and multiplied slightly. So, I began chemo again.

All chemos are different, depending upon the type of cancer (breast vs. colon, for example), and severity (stage I vs. IV). Some run for a few weeks, some for years. My regemin, for colon cancer, is called Folfox. I receive it every other Thursday--two times a month. On those chemo Thursdays, Neil joins me in our little private room, and I sit in a chair and receive IV bags of all sorts of drugs, including steroids, anti-nausea drugs, vitamins, and finally, the two chemo drugs. The combination of all of these is known as "Folfox". It takes hours, but while it's happening, we do email and watch movies, and as strange as it sounds, we have a pretty good time. (Ok, the preceding post would be an exception to this statement! Last time sucked. Win some, lose some.) Getting back to Neil, though, how often do you get to spend 8 hours alone with your loved one, with no distractions? It's almost like a date. Almost.

I then go home, but I have to wear a pack of constantly-infusing chemo for 46 hours. With all the tubes and tape, it sort of looks like I have a bomb strapped to my chest. I keep hoping I'll get to fly on a day like this, just so I can rip open my shirt and freak out the FAA crew. "CODE RED, THIS ONE'S WIRED!"

On Saturday, I get the infuser unhooked, and, free at last, I get to go on my merry way. It's not typically all that "merry" on Saturday and Sunday (nausea, malaise, depression resulting from feeling beat up and beat down. And beat through. And under. And next to), but in 48 hours or so, I bounce back and feel "normal" again. I'm lucky for that.

Two weeks later, I repeat the cycle.

I don't lose my hair, and I'm pretty peppy on the non-chemo days. I dare say, most folks would never suspect anything was "amiss" with me. You really can't tell.

Please forgive the shoddy writing here--I am blasting through this particular post, because I have presents to wrap and cookies to frost. For a better, more interesting description of what it's like to have chemo, check out my blog post from the month of September entitled, "I'm nothing but a fruit fly".

How long will the chemo last? It's hard to say. It's not like, say, strep throat, where you take a course of medication for xx days and can expect xx results. It's more of a moving target. I am planning for it to last at least as long as last time around, which was nine BLESSED months. It could be longer. BUT: I had an early scan a few months ago and the chemo was working beautifully, like last time, and the tumors were shrinking like mad. So, I have every reason to believe the same will happen this time. Knowing that allows me to get through my days in a relatively happy manner.

My next scan is in January. I'm expecting more good news then.

I know this is all pretty heavy stuff, but if it makes you feel any better, we are actually feeling pretty good about things. The chemo's working. Who knows what the future holds? You can't waste your life agonizing over what MAY be, especially when it's simply unknowable. All that's certain is the NOW. And right now, I feel just FINE, we are surrounded by family and friends, and we are pretty damned happy for that. I guess you could call us "blessed", as strange as that might sound. But I do feel that way.

Of course, there's always a little room for improvement.

Thursday, December 15, 2011

This is my brain on drugs

In the spirit of "keeping it real" and "full disclosure" and all that, I'll let you know that today was a rotten day. It was a chemo day, and I had an allergic reaction to one of my chemo drugs, Oxaliplatin. In what's now been 12 total months of chemo (9 months in my first course, and 4 months now this time around), this has only happened one other time. Last time, the reaction turned my torso a magnificent magenta, and I couldn't stop sneezing and itching. It was kind of a big deal to all the nurses, even though I felt relatively fine at the time-- I guess that kind of thing can be a bit dangerous if they don't get under control.

Now, 5 chemo cycles since the last reaction, the allergy again reared its shit-for-brains head. This time it took the form of semi-intense lower back pain. It felt like the moderates stages of back labor when you're about to give birth. Apparently my kidneys weren't digging the experience. To fix matters, they had to halt my chemo, give me a few hits of Dilaudid (ever seen the film, 'Drugstore Cowboy'? This is the morphine derivative that those junkies seek when they knock down the drugstores. Suckers. I can get that shit for FREE), wait a bit, then re-start the chemo on A V-E-R-Y S-L-O-W DRIP. What should have taken 4 hours took 8. We arrived at 8:40am and left just after 7pm. I was sitting in a chair most of the day, quite uncomfortable, alone with Neil, my nurse, Leah, and my spinning thoughts.

There were a few times I grew very upset today. I cried multiple times, sometimes quietly, sometimes blabbery and sloppily, out of frustration, fear, fatigue, anger, and pain. Usually I can handle those first four emotions well enough, but when you add the "pain" layer, your coping mechanisms quickly disintegrate and you are left feeling raw and weak. Susceptible to scary thoughts. I hadn't felt this way in a long time. (For proof, see my previous posts, even the one I posted earlier this very morning, for goodness sake, to witness the emotional see-saw).

Yep, that's the weird thing about this disease and its treatment. It can propel you into a sudden tailspin, with no warning. It spares no one, not even a balanced, strong-willed, happy, guns-blazin' person like me. Sometimes I wonder if after a few years of this, I will finally crack. I DO have my moments. I just wanted you to know that, since my last few posts have been all rainbows and cotton candy.

Speaking of pretty colors and sugar, the day did have some bright spots. My friend, Leena, and my mother-in-law, Bea, covered my childcare for much longer than they originally planned, and both kids returned at the day's end full of happy stories. I also received several sweet, unexpected emails from friends I hadn't heard from in a while. Those made me smile. They always do.

And, in my high-on-Benadryl -phase this morning (they give me 50ml of that drug, and honestly, it makes you BON-KERS!), I accidentally emailed a druggity drugged-out note intended for my friend Julie to my cousin's best friend in Ohio. Considering I've never once emailed her before, I'm sure it came as a surprise, hearing the news that even though I was totally high, I wanted to provide her with my new mailing address. Suave.

For that matter, if you ever feel like a good laugh, put yourself in my path every other Thursday around 10:30ish. I shock myself and undoubtedly others with the asinine, unfiltered comments that come flying out of my mouth.

Thanks, Benadryl, for the memories. Thanks, Dilaudid, for the lack thereof. Thanks, Oxaliplatin, for NOTHIN'. Should I win an Oscar this spring (Best leading actress, DRAMA), this will be part of my acceptance speech.

One hundred years, minus one day

The other day I was driving the car with just Betty on board. Just mama and her girlie. We have so much fun in the car. We play this game where we try to crack each other up by making silly faces at each other via my rearview mirror. We were also singing along to Christmas songs and holding hands during stoplights. I love that crazy nutball.

As we crossed Front Street, she said, “Mom? You know how in ‘Winnie the Pooh’, at the end, he says, ‘If you live to be 100, I hope to live to be 100 minus one day, so I never have to live without you’?”*

And I said, “Yes?”

She said, “That’s what I want to happen with me and you.”

I am getting used to my kids saying things that, considering my situation, hurl a dagger through my guts. Lately, though, it’s getting a little easier to hear some of that stuff because I have once again decided I am definitely going to live for MANY YEARS. I have to admit, I waffled back and forth on the feasibility of this ideal outcome for a few months after my recurrence. But now I am back to feeling like I am going to conquer this thing. Assuming I have any say in the matter. And, you know, I really think I do.

Tuesday, December 6, 2011

Holiday Casserole

Hey there, friends! Long time no blog. You may be wondering how we're doing since I've been so uncharacteristically e-silent (surely it's a word) these last few weeks.

I don't know what's come over me, but I've just felt so damned PEACEFUL lately. Sort of mildly anesthetized with happiness. I feel all this goodwill towards others-- why? I frequently find myself striking up unnecessary conversations with strangers in stores (I feel like I've actually found some unexpected friends this way-- I can still recount all the conversations). I feel extra generous. I've been rounding up when I tip. Even tipping people who don't necessarily need to get tipped, like mumbling take-out clerks who won't make eye contact with me. Smiling maybe a bit too earnestly at strangers I pass on grimy Rainier Avenue South, even if they seem scowl-y. (Ok, especially if they seem scowl-y, because, CHEER UP, PEOPLE.) Asking folks with less groceries to go in front of me. And I've been "slowing it down" more than I used to. I've stopped my car off the winding, 2-lane highways to show my kids the clouds lingering thickly over the mountains, or the way frost is now settling over the field. (Please don't groan. I really did. And it was really cool for all three of us.) We personify the goats and horses as we pass their paddocks on our way to town. We've got them all named and have developed their personalities and voices. I've felt extra patient, wide-eyed and curious, quietly calm and content. The Eagles would call it a "Peaceful Easy Feeling". I'm not sure what Menudo would call it.

We've been filling our days with all the characteristic happenings of November and December: turkey-eating, Xmas tree cutting/decorating, shopping, Nutcracker-ing. Dressing the kids up in holiday jammies. It's all seemed like a joy to me this year. Not a big production, just an easy, happy time. I'm serious. I don't quite understand it.

I'm not trying to paint some hunky-dory (I had to use that term, I've always hated its clunky, hyphenated weirdness) portrait of my life, I'm just reporting it as feels. Today it occurred to me, you know, Shelly, this is really such a tremendous GIFT you've got going on here. OKAY, OKAY, I KNOW, I've also some serious lumps of coal in my life's "stocking" (wince. the writing!) these days, but let's forget that for now. And we're not ignoring it, but it's just not as INTERESTING or valuable as the recognition that true happiness is a gift. That phrase I just used, "true happiness is a gift", sounds so played-out, almost trite, in its simplicity. But really, consider it. I know I am dealing with cancer. That's NOT a gift. That's a slab of shit casserole served cold and raw on my plate. But the ability to feel truly happy IS a gift. I am SO LUCKY to have cultivated it. I've got so many friends dealing with various unhappinesses now (health crises, relationship struggles, career dissatisfaction, family issues, loneliness, low self-esteem, regret, fear, etc.), and I really feel for them, just as they probably feel for me dealing with all this crappy chemo and cancer. I wish I had their health--I hope they appreciate THAT. But I'm so deeply appreciative for my peaceful state-of-mind and my overall "happiness". It's got to be helping me in this stupid "fight". Imagine me using my fingers to punctuate all those quotation marks I just heaped on you.

I guess we all have our shit casseroles AND our gifts. What a holiday table that makes. The trick is to appreciate the good things you have going for you, of recognizing a gift when it arrives, however it's wrapped. If you can do that, THAT'S a gift.

It's even better than a Chia Head.

Tuesday, November 8, 2011


All I have to say is that I feel very happy about life lately.

I don't quite know why I'm in such a good mood-- the last round of chemo absolutely sucked, and I've got this whole cancer thing hanging over my head... yet for some reason, I just can't shake this quiet, glad feeling.

I love and admire my friends, I adore my family (from good ol' Grandpa to brand-new AJ), and it's just so damned pretty outside. I may have cancer, but I still feel vibrantly alive and connected, and I'm eager to see what tomorrow brings.

Life is so sweet. I hope you are able to draw the same conclusion as you navigate through your days because I believe there is happiness to be found all around us. You just have to be looking.

Saturday, November 5, 2011


Love is when your husband lies alongside you on the bathroom floor in solidarity, and he stays with you so long he finally falls asleep right at your side.

Wednesday, November 2, 2011

Country Livin' and Sandbox Lessons

I write you tonight from our new, temporary home in Issaquah. We are staying with good friends who happen to have a very roomy house with three bedrooms and a huge bathroom to spare-- essentially, the 2nd floor all to ourselves. We're only 30 minutes from downtown Seattle but it feels like a world away. The mountains rise up behind us, the huge trees surround us on all sides, the homes are spaced far apart with lots of room for the kids to run and bike and play. It's quiet and peaceful. The last few nights there's even been a black bear visiting homes on this street, toppling trash, etc. Lock up your kids! All this gushing-- I don't mean to sound like I've never been out here near the mountains before (heck, we lived in Snoqualmie for a few years when I first landed in Seattle--before they built the plateau-- talk about hardcore), but it's just interesting to me how cozy and pleasant it feels to be here. A big 180 from Rainier Ave South, for those of you in the 2-0-6 who get my meaning.

We moved last weekend. By "we", I should say, mainly, "they". I helped, but really the bulk of the work was done by Neil, who woke every morning at 5 and hauled stuff all day long for many, many days. He's a strong OX! A tireless work horse. He's cattle! He's a donkey, he's a goat. We also got a lot of help from my mom, Steve, Casey, Erik, and Julie. And loads of child support from all sorts of friends. You all ROCK.

Just after my last round of chemo, when finally I started to perk up again, I attempted to help out. It's SO STRANGE with chemo; you WANT to help, you know you are strong/capable enough to help, and yet when you actually start hauling boxes up and down the stairs, your legs start to buckle and zing with exhaustion, as if you just ran 12 miles, and your heart feels like it's going to explode in your chest. Footsteps follow one another very, very slowly, as with mountaineers summiting Everest-- except, um, you're at sea level, on your stairs.

On Wednesday, I attempted to remove the sand from our kids' sandbox while Neil was at work, bucket by tiny-kid-bucket. You wouldn't think that the shoveling (with tiny kid shovels) and hauling sand 7 feet would even make you break a sweat, yet halfway through the project, I was soaked with sweat and panting so hard I had to call it quits. AND I DON'T CALL IT QUITS! That's not like me. So I put the kids in the tub (don't worry, they were safe), then laid on my own bed, staring at the ceiling, sand all over my pants (I didn't even take them off! On my own bed! Nasty!), my heart rate soaring from the activity, my breathing rapid, for about 20 minutes! I felt like someone who was utterly, completely out of shape. "Wow, you're really letting yourself go, Shelly", I thought. "Pathetic. Get up. GET UP!" I was frustrated. And at the same time I SUSPECTED the chemo had something to do with my sorry state.

Now, 13 days after my last chemo, I feel outstanding, and full of energy yet again. And I look back to the sandbox day and think, "WELL DUH, SHELLY. It was the damned chemo. Idiot. Gorgeous, charming idiot."

I'm learning things.
1-It just takes time to bounce back. After all, THEY ARE POISONING THE HELL OUT OF ME. I am infused with chemo drugs from Thurs thru Sat, but they affect me for many days afterward. Just when I start to really recover, they hit me with it again. Of course I should feel tired. DUH. Not helping matters, they now give me a shot IN THE STOMACH the day they unhook my medicine. It's to promote white blood cell re-growth. And it HURTS. And it makes you feel achy and sick (on top of the chemo sick) for a few days. (PS- Can I just add that when they told me they were going to start giving me a shot, IN THE STOMACH, and that it was GOING TO HURT, and that it was GOING TO MAKE ME ADDITIONALLY SICK for a few days, I just kind of shook my head and laughed and pulled up my shirt and said, "Go for it. Seriously. At this point, what the hell.")

2-It is SO HARD to accept your own vulnerability as a temporary state when you are in the thick of it. So hard to feel hopeful. Even for an optimist, like me. You really do not feel like you are ever going to be strong and un-sick and happy again, even though it always DOES happen, like clockwork, every cycle. As you get better, you start to believe again. And you want to write yourself a note, a la the film, "Memento", to remind your future self that you are REALLY GOING TO BE OK, JUST HANG IN THERE! You get to live out your soul's own deconstruction and re-building every two weeks. Talk about a mind-fuck. Pardon le francais. (The French should NOT be blamed for swearing, the Danes should!, but that's a different topic.)

This post reads like a rambling email. Alas. I just wanted to update you since I've been so out-of-touch recently with the move. I have lots more to say, but Lordie, this has been a long one. If you are still reading, give yourself a pat on the back. Maybe you were really just procrastinating at work, or avoiding folding the laundry as you read this. I don't care, it was nice talking AT ya, and I hope we get to speak live soon. But for now, I have to return tomorrow to the jungle for more of this crap. More of this crap that is saving me... my best worst friend ever.

Thursday, October 20, 2011

My inbox runneth over

For two weeks I've been receiving, enjoying, and saving your "levity" photos. (Please see previous post entitled, "A Little Levity, Please" for the backstory). Thanks for sending them! Holy Toledo! (And I ought to know. Born and raised.)

I will compile them shortly, and I'll update this post as they come in.

ps- Bonus points for exotic locations, interesting photo narrative/visual storytelling. But all submissions welcome, of course. (And if you send in a really boring one, that's ok, I'll MAKE UP a story for it.)


Got my scan results at today's chemo appointment. The tumors are all going down, some by 50%. He said the results are "fabulous". I've got a bunch more chemo to go, but we're once again headed in the right direction.

Looks like you're all stuck with me for a while longer.

Friday, October 14, 2011

Still no news...

...and I probably won't get any scan news over the weekend, so there you have it for now. I'm glad, in a way, because now I don't have to have a heart attack every time the phone rings. I have over-thought this a bit by now. Half of me thinks, if it were good news, he would have called by now. He wants to wait to give me the rotten news in person. The other half thinks, "Are you nuts, Shelly? It can only be improved news since last time. You've done 4 chemos!"

So. What can you do. Just keep on living in spite of it all.

In other news, I now am the proud wearer of a short, inverted bob. It was supercute on day #1 and looks like a crazy nest today---completely user error, not the cut. I will work on my skills.

My cousin and my mom arrive in town this weekend. Yay!

PS- I continue to receive photos from people every day (see the "Levity" post for more info on that), and they are getting cooler all the time, so I am going to re-open the submissions soon. Get fired up, people, this is like Christmas in October.

Tuesday, October 11, 2011


A smattering of thoughts now.

1- Neil and I have sold our house. We must move out by Oct 31. We haven't yet found a new house we love, so in the meantime, we will be staying with friends in Issaquah. This Saturday, our moving truck will pick up our big items. Then for two weeks, our house will be like a shell, with a few mattresses and chairs scattered about. It'll be like camping! Perhaps rather than blogging, I should get packin'.

2- All my life, I've had heaps of hair. Hair to spare. Grandma Yark used to say, repeatedly and rather famously, "YOU'VE GOT ENOUGH HAIR FOR THREE PEOPLE." For evidence (wince), view any photo of me from the 80s-90s. And now, this damned chemo has seriously thinned it out. I lose glops of hair every time I shower. I'm not balding, but I think I am going to require a new hairstyle. Shelly with limp hair: The apocolypse is near. But! Vanity is alive and well. I'm now accepting photo suggestions for a cute new 'do.

3- Steve Jobs. What to say that hasn't been said. Yet another aspect of this strikes me, too. It's utterly amazing how long he lived, YEARS, with stage 4 pancreatic cancer. He shattered his grim life expectancy odds considerably. So I keep thinking of him, wondering what makes a person strong like that. What sparked him. What spurred him on. Where he found inspiration. I need to figure out what he had inside him and channel some of that. Not because I aspire to change the way the world communicates, but simply because I want to be here for the long haul. I've felt a bit discouraged lately, and I am sick of it.

4-I have a PET scan this Thursday morning to see how this chemo is working. My doc says I might even have the results by Thursday night. I'm nervous.

So there you have it. All the news that's fit to print on this rainy Tuesday night.

Friday, October 7, 2011

A little levity, please

The other day I was texting a friend of mine (who shall remain nameless, I won't even tell you her gender) while she was sitting in an examation room, waiting for her doctor. To be more specific, she was waiting to start her annual gynecological exam. As if I needed proof, she then texted me a photo of her view of the bottom half of the exam table, covered in that sterile white paper roll, with the fuzzy pink feet holders extended. A scene every woman could easily interpret. No comments were needed, it was just a simple capturing of her life at that moment in time.

I thought, this is kind of a fun way to keep up with what is happening in my friends' lives. We're all running these parallel lives, immersed in various activities at once. And Lord knows we love our technology. Since I'm sitting around my house the next few days, please feel free to send me a quick snap of a scene from your everyday that needs no explanation, but which encapsulates whatever is happening for you at that time. Like an email, without words. It can be self-explanatory or cryptic. Dull or silly. Whatever you send, it will make me smile. And feel connected.

If I get enough interesting ones, maybe I'll post them.

I'll let you know if I get any entries. Stay tuned.

Tuesday, October 4, 2011

Second opinion

Today, Neil and I are headed over to the Seattle Cancer Care Alliance to meet with an esteemed doctor who is going to give my case a second look. See what he says. See if they have any alternative ideas for clinical trials, treatments, etc. Not that we have any doubts about my current doctor or my care, but, as a physician friend of mine said, it never hurts to have as many smartypants doctors looking at your case as possible. It's like doing your homework. And--I'm lucky to live in a great town for having this disease. Seattle has some terrific doctors and programs to investigate.

(HA! Add THAT to your roster of nicknames, Seattle! "The Emerald City". "The Jet City". "The Queen City". "CancerTown USA".

I got the SCCA's impressive introduction packet a few weeks ago, but didn't look at it until last night. Looking through this stuff is a DRAG. On top of chemo and everything else, the last thing I feel like doing is reading cancer marketing materials, no matter how empathetically written. You know, hopeful sentences like, "Many cancers are highly curable if they're detected in the early stages." (Great! Wait. I'm stage 4.) (P.S.: There is no Stage 5.) (So! You just let that roll off your back, Shelldogg. Remember: you're your own case study! No one has ever had your exact cancer before! The future is not written yet! Screw the stats!) Let the pep talks roll! Laissez les bon temps roulez!

After the appointment, I think I may roll on down to my sister's restaurant (LITTLE WATER CANTINA in Seattle's Eastlake neighborhood! Check it out.) and drink a stiff margarita or two. Nothing has changed with my health, and in fact now that I've completed three rounds of chemo, I should soon find out that my cancer is again receding-- but just talking about it in depth, play-by-play since Nov '09, can take the wind out of your sails.

All that being said, I feel strong this week, and I'm ready to hear what they tell me. I'm wearing my rhino-skin jacket.

Thursday, September 22, 2011

I'm nothing but a fruitfly

I wrote this almost two weeks ago but didn't feel like posting it because I was so sick of cancer, sick of talking about cancer, and sick of telling people about what it's like to have cancer, etc., that I couldn't muster the energy to hit the "publish" button. But I'll post it now because a few friends have recently asked me how I was coping with chemo, etc., and so.... :


Tuesday night, I returned from cousin Melissa's wedding (more on that in a bit) to find a fruit fly infestation under my sink. When I opened the bin, a swarming grey cloud rose and attacked me, then, like an explosion, spread out to the four corners of my kitchen: Cabinets. Windows. Sink. Countertops. All covered. I had left a bunch of banana matter to rot in my compost bin over the hot weekend. Whoopsie daisy.The bin's liner bag had liquified, and the bananas were now a brown lake. Hundreds of tiny egg sacs dotted the walls of the stainless steel can. Waiting for their chance.

I spent the day trying to vacuum up flies, or capture them in various liquid traps. I can't tell how much progress I've made, but I know that since I've removed the food source, soon enough, they will all die off. Then maybe we'll return to normal.

For some reason, this insect lifecycle (of quiet incubation, then, a torrent of energetic, soaring, in-your-face life!, then death, and repeat) reminded me of my own two-week chemo cycle. As I'll explain now, starting with the "death" phase, and moving toward the "hatch".

This morning, Neil and I will go in for chemo #2. I'll feel ok today and tomorrow, then by Saturday, up to my gills in poison, I'll feel like crap. On Sunday, I'll be a poisoned, thick-headed zombie who sits in quiet rooms on chairs, staring at things, turning my head around slowly, blinking, sometimes wincing for no apparent reason, unlikely to answer the phone, inept at writing emails, incapable of making decisions. Monday, I'll start to track with conversations better again, though the nausea and the head-games will persist. Tuesday, the feeling of energy will slowly seep back into my being, and I'll grow giddy at the idea that I might someday feel normal again. By Wednesday, SHA-ZAM!, you'll never know anything ever happened to me. Then! I get a WEEK of SHELLY! And all that that means! And you who know me know what THAT MEANS!!

Then, repeat. Death, egg sacs. Hatching. Glorious flight.

Because of chemo's cyclical nature, you'd think I'd be used to it all by now. Somehow, however, I'm not. At each new chemo cycle, I feel angry all over again at my physical and emotional shakiness. And at how poorly I cope when I'm in the thick of the poisoning. (When you're beaten down and sick, you cannot deal well with heavy topics, things like cancer). Last time, when they were unhooking my chemo after mainlining it for 46 hours, an anger took root in me, and I simply could not restrain it. The sweet nurses who know me as a certain type of person were subjected to a soul in crisis. A raging human. I SWORE at them. (I used the "f-word" once, with conviction.) I snarled. I swatted at things. I seethed piss and vinegar. (Not literally, although that may well be a side effect of SOME type of chemo. Wouldn't surprise me.) As I drove home, I called Neil to unleash the rage on a safe, understanding target. Through clenched jaws, I choked out my words with a furious snarl I didn't know I could produce. NO. NOT THIS AGAIN. I CANNOT DO THIS. A HUMAN SHOULD NOT HAVE TO DO THIS. WHY THE HELL IS THIS HAPPENING TO ME? I AM A NICE PERSON. WE HAVE BABIES! I AM YOUNG! I used words like, "torture," "poison," and "THIS IS NO WAY TO LIVE." And I meant every single last F-ing one of them.

I knew this was no way to start out my 9 (+?) month chemo stint. I KNEW I needed to get my mind in a different place, or I'd never be able to get through it. I imagined how it must have felt to be an ancient Egyptian, in Giza, tasked with building those pyramids. I felt like I was standing there, looking at the schematic drawings while holding that first earthen brick, and thinking, "YOU'RE TELLING ME WE GOTTA BUILD that...WITH these?!"

Flash forward a few days. I'm in northern Michigan for my beloved cousin Melissa's wedding. All the Bakers are there. So many friends. A beautiful setting. Pure joy, really. Lightness. We danced all night. I didn't think about my health a bit. I wasn't in denial, either. It just didn't have any place there. Totally irrelevant. I'd even venture a guess that no one meeting me for the first time would have suspected there was a THING "wrong" with me.

Laying in my bed, listening to the wind roaring through the trees and the waves crashing on the lake, I felt complete peace and happiness. So many loved ones, so very close by. So much more fun to be had in this life. And so much energy to direct toward that fun.

From grizzly bear to zen master, all in ONE WEEK. And this swing will repeat, bi-weekly, for an undetermined amount of time. It's a very strange way to live, and sometimes it's brutally difficult, but I'm simply going to have to rise above the bad times and continue to embrace the good times. It's the ONLY WAY TO GET THROUGH THIS and still enjoy what I know is a pretty remarkable life.

Wednesday, September 21, 2011

Reluctant Poster Child

I haven't been writing much lately. I know.

Recently, I started to come to this unsettling realization that all people think about when they see me is cancer, cancer, cancer. I talk! I blog! I raise money! I require assistance at times! I feel like I've become a one-trick pony of the most unfortunate sort. And I've become so bored/annoyed by it all that honestly, I haven't been able to muster a sentence more about the topic in the past two weeks.

Part of it is my own fault. I'm the damn person who started the blog, the one who yammers away in detail about everything that's on her mind for the whole world to hear. I'm the one who tells you how chemo feels, about when my next scan will be, about my deepest fears and hopes. I recently told a friend that sometimes I feel like the "Ellen" of the cancer world, the young woman coming out, guns blazing, for all the world to witness. I'm now annoying MYSELF a little bit.

And maddeningly, all this talk centers around the one aspect of my life I hate the most. Not to mention, the one that least defines who I am. Cancer is something that happened to me, randomly. It's nothing I chose, and it sure as hell doesn't say a thing about the type of person I am. It was just plain ol' shit luck. Like getting rear-ended on the freeway. Or getting both legs broken. (Except, way worse). For those of you who knew me prior to November 2009, there were probably a number of ways you would have described me. You might have said, "I work with her" or, "She talks a lot", or even, "She's tall". Among many (hopefully more interesting) other things.

Now, if anyone asked you about me, your first response would be, "Cancer." Then you might describe the other parts of me. Isn't it the truth?

Why do I care? I'm sick of it because I don't feel that way about myself. I feel like it should be more like my 8th or 9th bullet point. It's something I am forced to think about. A pesky thorn in my side. An enormous, pesky thorn. And it's not getting the best of me yet, either. I feel totally healthy, except right after chemo, of course. I have loads of great people. The kids amaze me every day. We are looking to buy a new house, planning for the future. Things are happening! I spend my days feeling happy, and I honestly don't focus on cancer, except when I have to. And sometimes I do. But I definitely don't feel sorry for myself, and you shouldn't either.

I guess I just hope you understand that there's a still a balance in my life. Whomever "you" might be, and if you are even reading. And I hope I project that sense of balance, because if I don't, I'm not relaying the entire story. And at this point in the story, the C-word has officially bored me to tears. No, worse: to silence.

As has this particular post. So let's end it now.

Thursday, September 1, 2011

Stand Down*

I'm frustrated. "Swim Across America", the swim race in which I was all set to participate, will be taking place during my chemo treatment. As in, I'll be wired up with vials of chemo as the people are swimming. So I can't do it, after all.

The good news is, with or without me, Team Shelly has raised a more-than-respectable amount of money for cancer research. It goes directly to help with cancer prevention, and to find better treatments and cures. I'm so proud that our scrappy group has cobbled together this considerable amount from nothing. SO PROUD.

Someday, the advances they are making today WILL help save someone you love! MAYBE EVEN ME! Please consider supporting this cause. I will write you a very heartfelt thank you note, and you'll be part of something incredibly important. (Please copy and paste this link, because I can't figure out how to post a link in Blogger. Welcome to 1986, Shelly):

We're also very close to being the #1 team in terms of fundraising. Behind some big corporate hotshots. US! HA! TAKE THAT. GO TEAM SHELLY!

Thanks for considering!

* "Stand Down" is swimming-speak. When competitive swimmers are standing on the blocks, about to race, the starting judge will occasionally halt the proceedings and announce, "STAND DOWN". It means, "WAIT. Step back. We're going to redo this start."

I should write for Wikipedia.

"Mommy has cancer."

Yeah, I know. Brutal. Here's how it went.

The kids (3.5 and almost 5) and I were sitting on the floor near the kitchen. It was Friday morning, the day I was going to start up chemo. We were still in our jammies, climbing all over each other, playing, and it felt like "the time".

"Hey guys! Guys! Listen to mama for a minute! Hey, you know how sometimes you go into the doctor when you're sick? And they give you medicine?"

Betty: "Like when I got the ear bafection. And they gave me that pink medicine. It was SPICY."

Me: "Yes! Just like that! Sometimes you get ear infections. Sometimes Rho-Rho gets croup. Sometimes we get the flu and we throw up? Well, mommy went to the doctor a few days ago, and I have a kind of sick, too. Mine's called, 'cancer'. And so I am going to have to get medicine for it, so I can get better, too."

The kids kept playing, only mildly interested. Quietly, Rhodes tried out the word. "KEN-SER."

I continued, "So, the funny thing is, for this kind of sick, they do a different kind of medicine. It's not like ibuprofin or tylenol, the pink and red types I give you when you feel yucky and are sick. It's not the spicy kind, either. The kind I will get is called 'chemo'. That's the word for it, 'chemo'. And the funny thing is, I have to take it for THREE DAYS in a row. See this little bump in mommy's shoulder? They put the medicine in here, and I'll come home with a big bandaid, and I'll take the medicine for a few days. Then, I'll go back to the doctor, they'll take the medicine off, then I don't have to take it again for TWO MORE WEEKS! Isn't that different?"

Betty: "Ha! That's long!"

Me: "I know! And the way you take this kind of medicine is, you take it for lots and lots of months! Then, after a long time, you get better."

Betty: "Oh."

Me: "And sometimes the medicine will make me feel a little tired, so daddy and other friends might play with you more on those days."

The kids were rapidly losing interest. Rhodes had grabbed a plane and was rolling away from me. So I quick summed up, "So. That's what mommy's doing today, getting some medicine, and I just wanted to let you know!"

They haven't talked about it since, although during that 3-day span, both kids pointed at my shoulder area once, which was covered with tape and bandages. I wore big, boxy clothes to hide all the tubing and the vial of chemo underneath. No need to flaunt it and invite conversation. But I wanted them to hear the words from me, presented in a non-scary and factually correct way, so if they hear them again moving forward, they aren't surprised or confused.

P.S--I hope this post wasn't dreadfully depressing to read. I just thought some of you might have wondered how we were handling the ''kids" aspect of this. I'm happy with how it went, and my hope is that, one day, they will be able to look back with the heightened awareness that age brings, and think, "Mom and Dad, you did a really good job with all that stuff, because somehow, I barely even remember it ever happening."

Thursday, August 25, 2011

Top it off

It took me about 48 hours to get my head around this, but I wanted to let you all know that I am back in the game. Got my head on straight again. Standing up. No longer lying in the soil.

It suddenly dawned on me this morning that, hell, there's only one way to think about this: Just keep on living. Just like I was before I heard the news. Enjoy this day. Go out. Play with kids. See friends. Why shouldn't I? None of us know how long we'll be on this earth. I can't predict the end game here. Chemo might work fabulously for me once again. So, nose to the grindstone, do it. But in the meantime, enjoy what you've got. Try not to let fear paralyze you, or spin you into a deep funk. It might ultimately be wasted energy. (If history teaches me anything, I could be in good shape again in less than a year.) Be strong. Let friends help you and love you. Love them right back. Appreciate everything, as much as you can. Have faith in the treatment plan that has been set up for you. Recognize your tremendous physical and mental strength as the gifts that they are. Be patient. Be brave. Be happy, even. Glass half-full. Glass 3/4 full.

Oh heck, let's go a little crazy here and fill that glass all the way.

Then let's try to stop using corny idioms altogether.

Wednesday, August 24, 2011

Robin Deadbreast

A collective shout-out to everyone who has contacted me in the last two days. I have responded to precisely ZERO of you because my mind is reeling and I don't really know what to say or think.


It's hard to hear news like this when you feel, look, and seem 100%. You just keep shaking your head and furrowing your brow. "How could it BE? How could something grow from NOTHING?" You look at your abdomen, disgusted something so evil could be lurking, even flourishing, inside.

After my last foray into the upside-down chemo world, it took me a while to get out of the "sick" mindset and return to "old Shelly". Where you start to look around at life and feel like, yes, this could all be yours once again! "A new car!" You almost don't dare to hope such a thing could really be true. Around 3 a.m. last night, an image entered my mind of a bird soaring freely in the sunshine, lost in its reverie. Then suddenly it slams into a glass window. I could practically feel the dirt under my own back as I blinked up at the sky, confused, clutching my own broken body.

And I did not take any drugs last night.

It's going to take me a while to get used to being a patient again. To get back into the chemo groove, of being sick and tired and hobbled some of the time. This time, too, I'm going to have to let my savvy little daughter (and son, I suppose) in on the story. It's got to come from me, so I'll deal with this soon.

I feel a lot of things: discouraged, confused, scared, furious, indignant, sad, shocked, wary, exhausted. And moderately hopeful, but sometimes not.

So the way I chose to deal with it today was just do my best to forget about it. To take the kids to see the Caspar Babypants concert, meet Neil for lunch, cook dinner, water the plants, look for homes. Maybe later we'll take the kids up to the pool, though I know Neil is utterly exhausted.

This post may seem a little indulgent, yammering away about my muddled feelings, but I figure some of you are wondering how the ol' gal's doing. I think the answer is: Fine. Dealing with it. Letting it sink in. Trying to figure out what's next. Fully aware of how sucky this all is.

Tuesday, August 23, 2011


PET results in.

The cancer is back. CyberKnife didn't seem to work completely. A new liver spot, as well. Starting chemo again on Friday. The same Folfox as before. Every two weeks I will spend two days hooked up to chemo. For... 6 months?

It worked last time. It should work again. My doc has seen people require a number of courses of chemo til they finally go five years cancer-free. I have hope. And I have some work to do.

Friday, August 19, 2011

No news yet

Hi all,

Just a quick note to say that I haven't heard back on my PET scan results yet. I promise to post it here when I do. I am not sweating it, to be honest. I have a good feeling about it.

Happy weekend!

Wednesday, August 17, 2011

Peanut butter and fish

After a glorious summer of health, happiness, and normalcy, tomorrow I return to the shit-for-brains cancer world for a PET scan. Just heading in that damned building makes my quills stick up. That place SMELLS like terror.

This scan will prove if radiation I got in April and May worked. And, just as importantly, that the rest of my body remains cancer-free. If the latter proves to be true, it will be almost TWO YEARS since any NEW cancer has been detected in my body. (Apparently, the spots they burned earlier in the year were old cancer, cancer they already knew about, and that's significant and different than if new spots were growing rampantly in new places.)

I am not a numbers gal, FAR FROM IT (has anyone seen my solar calculator?), but in this utterly senseless cancer dimension, things are completely uncertain and unpredictable, so you gravitate toward anything concrete. In this case, I look at survival rates, WHICH I KNOW, I KNOW, I should completely ignore because I am just one spot on the spectrum and what happens to "most people" doesn't apply to me. Hell, I shouldn't be in this group in the first place. But still, it's hard to ignore those dreary numbers.

And yet, shitty stats being what they are, if this scan comes up clean, my long-term survival percentages will rise dramatically. It will be almost two years with no new cancer. I will be a respectable distance down the survivor road. It's almost too much for me to think about. How can I possibly allow my hopes to rise, when I know all too well how devastating it feels to have them dashed? The results will be what they will, and I am placing myself in a protective "cross that bridge" mindset.

I'm hopeful. If I were sitting at the Vegas Sands right now, I'd put all my chips on GREEN. (Dad, I know. You raised me better than that. That's not how gambling works.) But it's my not-so-swift-in-the-cranium way of saying, I think I'm going to pass the scan. I just feel too damned normal and good for it to be any other way.

So today: the PET scan diet. No carbs. No sugars. No fruits. Only proteins. Nuts. Cheese. Lean meats. PTTTTTTTH.

And tomorrow at 8 a.m., the PET scan. Then, I am going to let my doctor call me with the results whenever he gets them. I am not going to hound him and live in a state of desperation, where the sound of the phone ringing fills my entire being with utter terror. It's too taxing. I'll let you know when I find out the results.

Love, Shelly
B.A., drama

Tuesday, July 12, 2011

Grover Cleveland

No news! That's good news. All still great here. I feel like a HUNDRED BUCKS. No, make that a thousand. I literally feel like one thousand dollars. I feel like legal tender, all papery and crisp. Somebody billfold me--quick.

Since I have no bad news to share, I guess I will have to start writing about happy, pithy, or trivial things. Seems more fun to me, anyway.

So today's topic will be: discontinued US currency.

After referring to myself as a $1,000 bill, above, I wondered if such a bill really existed. (You'd think I'd know, but really, I tend to deal with 20s, mainly.)

Sure enough, it did.

From Wikipedia:

"The base currency of the United States is the U.S. dollar, and is printed on bills in denominations of $1, $2, $5, $10, $20, $50, and $100. At one time, however, it also included five larger denominations.... $500, $1,000, $5,000, $10,000 and $100,000...The designs were as follows:
$500: William McKinley
$1,000: Grover Cleveland
$5,000: James Madison
$10,000: Salmon P. Chase
$100,000: Woodrow Wilson"

Cutting to the chase, these big bills were discontinued in 1969. Alas. Now we know.

Poor Salmon Chase. If you ask me, that was kind of his only shot at becoming a household name.

Over and out.

Monday, June 20, 2011


Quick update, since I haven't written in a while:

I feel fantastic! 100% normal. Healthy, strong, happy, FINE! And I'm having a terrific summer.

Here's how I've been occupying my time in the last few weeks:

1- MOVING SOON! Neil and I have spent the couple weeks getting the house ready to put on the market. We unloaded loads and loads of stuff to Goodwill and various organizations. (FYI: looking for a simple, free-of-charge way to renew your spirit that I guarantee will work? GET RID OF JUNK YOU DON'T NEED! I didn't really realize we had a "situation" in our house and basement until we started unloading crap. But how much of that stuff do you really need? NEED? So donate it! Consign it! Have a garage sale. Someone out there does NEED it. It feels so fabulous to have open space and order and organization in my life. (I'm sending my resume to Martha Stuart after I finish tapping out this post.)

1b-I GOT OVER IT. I finally finished unloading all those boxes of kids' clothes I lamented about a few months back. The ones that I was saving for the theoretical third child. And I felt fine doing it. It's just stuff. It's just stuff! (Especially since I'm giving about 300 outfits to my cousin, so they're all "still in the family", which somehow makes me feel happier, as I'll someday soon see them trotting around again on a new lovable human.)

2- FRIEND IN REMISSION! My friend, "A", the one I wrote about a year or so ago, the one who shared my stage 4 colon cancer diagnosis, and who came to all my chemos, is finally, after 12 sucky months, in remission herself !!! So keep hanging in there, fellow fighters. Medicine is improving literally every day. My own doc told me my odds for long-term survival have improved since this time last year. (I made him give me the numbers-- he is not normally in the practice of doing that, but I wanted some science behind my good feelings).

2b- On the topic of health, next steps for me will be a scan in mid-August to judge the effectiveness of my CyberKnife(s). And of course to see if anything new has grown. Until then, I get to stay the hell away from the Cancer Institute for a while-- at LAST.

3- SWIM! My daughter did her first freestyle recently--well, using the term "freestyle" extremely loosely, but hey. And we're going to be hitting the pool a ton this summer. Want a fun, productive goal for the summer that will help others? You can sign up to be on our Swim Across America team (you can be on "Team Shelly"!) Choose between a half-mile or 2 mile distances, in Lake Washington, on Sept 10th.

4- CAMPING TRIP! As I am holed up in a corner hurriedly writing this, my kids and husband are rushing about me, packing up our gear, since we're headed out for a camping trip on the Sound this weekend. Tidepools. Tents. Stars. The sea. We are so excited.

5-OHIO!! We are headed back to Ohio to see the family and friends this Tuesday-- for 12 days! We can't wait for the heat and all the fun back home.

Must run. My husband is being patient, but I'm not holding up my end of things today, so I gotta run. Hope you are all doing well, too. Go out there and get 'em today, tiger.

Friday, June 10, 2011

T.G.I.F. - Thank God I'm Finished

It's Friday night. The last of my three Cyberknife treatments concluded today. Amazing: Three days ago, I had a little cancer. Tonight, I probably don't anymore.*

Amazing. You lie on a table for an hour a day, for three days, and KAPOW! Gone. No pain. I bet back in the 1950s, they envisioned something like this would be possible in "the future", and if you step back and think about it, doesn't the year "2011" sound sort of futuristic?

If you are just tuning in, and you want to know what happens during a Cyberknife session, check out my February 28th, 2011 entry entitled, "Meet Lenore".

Helluva week. Nitey-nite.

*This statement blows my mind so thoroughly, I had to leave it dangling there, alone, on the end of the paragraph. Because what can I add after something like that? "HOLLA!"? "THAT'S WHAT I'M TALKIN' ABOUT!"?

Woefully inadequate. So for once, I'll just say nothing.

Thursday, June 2, 2011

My life as a rich, older gentleman

Last Thursday, I had my planning CT scan for this week's CyberKnife. All went well, and I'm set to get my lung 'Knifed this Wednesday-Friday. It will only take an hour a day. Then, as the informative marketing video states, "(I) can go play a round of golf afterward!" (I get the impression most people dealing with this procedure are men of a certain age.)

The pneumothorax biz-nasty is a thing of the past. After my recent two week (+/-) stay, I know half the staff at that hospital. Truly. I walk down the halls and find myself high fiving, pointing, smiling, and stopping to field questions, like some wealthy old codger roaming the halls of his beloved country club at cocktail hour. I even introduced one O.R. nurse to a CyberKnife tech, and suggested they grab lunch in the hospital cafeteria sometime. (I think those two would hit it off.) It's weird, I know... but I guess you gotta make the most of your days, no matter where you spend them.

That being said, I'm doing fabulously now. In fact, last weekend was jam-packed: Friends, dinners out, yard work, pool time with kids, lap swimming, big stadium rawk concert, Mariner's game, birthday party-- all in two days! All I missed was some time out on the back 9, and I'd really have been living large.

All right. Gotta run. This french toast isn't going to cook itself. Sometimes kids can be so neat!

Monday, May 23, 2011

Read my lips: No new pneumothorax

Today was a huge day for me.

I had a one week follow-up X-ray to see if my lung was still doing ok, and not showing further signs of collapse. At this point, collapsed lung would necessitate not only another godforsaken chest tube, but potentially greater measures, like sucky chest surgery.

A collapsed lung, you may recall, is called a "pneumothorax". Pronounced, "NEW-moe-THOR-ax". Since I've had them in the past couple of weeks, then they'd resolve, then they'd recur, I have often found myself saying, "I hope I have no new pneumothorax." And it would always bring to mind George H. W. Bush's famous GOP presidential nomination speech sound byte:


Those words, stated in his particular voice, have been running through my head at all hours over the last two weeks. Like a bad pop song you can't shake. Or like the scary sound from the Friday the 13th movies you'd hear just before Jason fatally bludgeons an unsuspecting coed. Just adding to the hell of it all.

But I'm happy to report that today's x-ray showed NO NEW PNEUMOTHORAX. Which means NO NEW TORTURE for me. We are back on track.

My body soap theory seems to be correct...

Friday, May 20, 2011


I don't consider myself a particularly superstitious person, but the fact of the matter is, I've been entertaining some unusual superstitions in the last year, and today I need to tell you about one in particular.

Back when the shit first hit the fan, health-wise, I received some very nice gifts. One such gift was an extra large container of Philosophy body wash. Scent: "Strawberry Milkshake." I vividly remember first using it in my post-op days and thinking things like, "Wow, I am too skinny," and "Holy crap, I've been using this stuff for two weeks now, and I still haven't even made a dent in this bottle," and, "This is pleasant-smelling, and while it maybe wouldn't have been my FIRST scent choice, I like it. I wonder, though, if I will be able to get through this entire bottle. This is a LOT of strawberry body wash."

Still, I persisted. Months passed, and I SWEAR to you, I emptied MAYBE a half-inch. Reams of pearly pink soap remained, glistening.

I endured 9 months of chemo. I started getting better. But still, it was chemo, so it was not a good time overall. I continued using the soap.

Then somehow, probably in an early morning haze, I subconsciously made this connection between the remaining amount of strawberry soap, and the total time it would take to rid my body of cancer completely.

Completely rational and scientific, I realize.

I didn't totally buy in to this logic at first, but as I starting doing the math (and you know writers are good at math), I realized, "Y'know, if this thing IS going to go away, it will probably take EXACTLY that long." (As I pointed through the steam at the bounteous, half-empty bottle).

A superstition was born.

Around Christmas last year, with about 1/4 of the damned bottle left, they noticed the regrowing tumor in my liver. We burned that one out. Then, as the bottle started looking close to something I could conceivably finish, they discovered the regrowing tumor in my lung.

The clever reader might now say, "AHA, your logic is failing, Shelly. The bottle of body wash is almost empty, and things are getting WORSE." I'll admit, I started to wonder myself.

But then the damndest thing happened. The beauty supply company, Sephora, sent me a birthday card in March, redeemable for a gift in-store. The gift could be anything: Lip gloss. Lotion. Who knows. I never remember to use it. At the very end of my birthday month, I happened to be in a mall, and I happened to pass a Sephora store, and I happened to remember my "free birthday gift" card. So I cashed it in, and of all things, the free gift turned out to be a large bottle of Philosophy body wash, and the scent was called, of all things, "Happy Birthday, Beautiful". It smelled like vanilla yumminess, a scent I definitely would have chosen.

I wanted to use it right away, but first I had to finish what I started with the strawberry bottle. I HAD to ride it out. I suspected I would receive one final health-related "F-You" before it ran out, too.

Sure enough, with just a few squeezes left, the whole pneumothorax debacle ensued. As much as I loathed that experience, it seemed to jive in my head with my idea that my troubles were almost done. One last, shitty hospital stay, then I could move on. And I could soon switch to the new, yummy, GOOD LUCK bottle, the one bearing the message, "Happy birthday, beautiful."

If anyone is still reading this ridiculous line of thought, I just want to let you know two things: 1) You must truly like me, because I might not have read this far if I were you. This post is not unlike listening to a friend painfully recount last night's "amazing, but so weird!" dream. So, thanks. I love you, too. And, 2) Some good news. Tomorrow's shower will be the final shower I ever take with the strawberry body wash. There is just a TINY speck left, and then it will really and truly be ALL GONE. AND, my health is getting back to normal. I'm about to have my final CyberKnife, in two weeks. And! After an unseasonably wet and cold spring, the summer sun has FINALLY shown up in Seattle, just this week. I am practically delirious over it.

I have this strangely awesome feeling that my luck is all going to change.

Ridiculous? Perhaps.

But I prefer to think of it more as "Happy *&#$-ing birthday, at long last, ShellBell."

Wednesday, May 18, 2011

Happy again

After a few morose posts, I just wanted to let you know that I'm feeling much better again.

Today was a gorgeous day, and I'm very happy. Lots to look forward to in the next few months. And no more chest tubes!

Boxes and boxes

It recently became apparent to me that I should do something about the crates and crates of baby clothes stacked in our basement.

Not just crates. Labelled crates. By age. And gender. "Boy, 3-6 months". "Girl, 18 months". Etc.

I am not a tidy person. My own closet is bulging. My purse is a mess. My dresser top is cluttered. The fact that I made the time to wash, sort, fold, label and lovingly seal away these tiny treasures for "someday" is a testament to the fact that having a third child was very much THE PLAN. Not just a plan, a certainty.

My kids are now 4 1/2 and 3. They are blasting through their clothes, and almost monthly, I find myself removing teetering stacks from each of their rooms and transferring them down to the basement, to the holding area, where I habitually store them for future use.

Nine months of chemo, and a still-uncertain prognosis later, I am starting to realize that there probably won't be a "future use", at least not in this household. That realization, combined with our new commitment to de-cluttering and simplifying, makes that wall of plastic labelled crates start to feel less like a happy hopeful place and more like a burden. A bit of a glum reminder.

So recently, probably about 15 months after Neil was ready to do it, I began to disassemble the wall. One bag for goodwill, one bag for my sister's daughter, one bag for consignment, one bag for my pregnant cousin (boy? girl? not knowing makes this particular pile difficult). Seems like a no-brainer, I know. And after all, it's JUST CLOTHES, albeit, in many cases, really nice clothes. But I never guessed that the mere act of unfolding a simple cotton onesie, once gingerly snapped around chubby legs, now carefully folded and tucked away, could cause such rapid breathing and consternation on my part. She wore this jumper when she visited Santa! These socks match that top, and he wore them on the dock that first summer. Every single item conjures a visceral memory for me.

I guess I didn't realize I'D feel trapped by such sentimentality. That's the stuff of films on the Hallmark Channel.

But it's not just clothes, is it. It's letting go of a dream, a plan, a certainty, that has been altered without my consent. All that on top of the obvious: That my kids are getting older, and they'll never be small again. And so the entire task has become a burden, an unfinished project that Neil is too kind to nudge me into finishing.*

Anyway, I do need to get around to finishing this task. But not today. It's too sunny outside, and who wants to spend a lovely day in the basement with all THAT.

*(I wish the same could be said for his "nudging me" to clean out my closet! Ji-zuz! Ol' ball and chain...Hey, thanks for coming everyone, I'll be here all week.)

Tuesday, May 17, 2011

Shelly's Blue Period

Suddenly, all of Picasso's work from 1901-1904 makes complete sense to me.

In the spirit of "keeping it real", I feel like I should 'fess up and tell you that I am feeling moderately depressed. I am not usually depressed, or if I am, I can somehow think my way out of it. Summon the Pollyanna within. Figure out a reason to smile or be grateful for things going as well as they have.

But right now, I feel more like I can identify with those women hugging their knees in the Prozac ads. I don't like this. If anyone reading this has depressive tendencies, I feel the need to validate you. You have a tough row to hoe. Hang in there, and I hope you can get help, because being depressed sucks.

I can't figure why I can't think my way out of this one.

The sun is shining outside, and we have a lovely view of Lake Washington from my house. There is a bald eagle soaring right above me, as I type, not even flapping his wings, just coasting. Lucky fellow. The city looks marvelous. The snow-capped mountains look crisp and clear. I've had THREE friends stop over today (bearing food, no less!), I've got loads of friends willing to help with the kids, no questions asked. My garden is blooming. I don't have a chest tube anymore. I've got a great husband. The only cancer I have is so small, one surgeon couldn't even spot it on the scan. I'm good enough, smart enough, doggone it, people like me. What the hell is my problem.

I spent most of the last two F#@&ing weeks in a hospital. I spent most of the last two F#@&ing weeks in severe pain. I spent most of the last two F#@&ing weeks in a hospital bed, not allowed to get up, since I was attached to suction on one side and an IV on the other. I wasn't even allowed to go in the bathroom--they brought that to me! Sayonara, dignity. I had four invasive lung procedures, none of which proved particularly effective, for all the trouble. Each time I thought I was "better", I'd have to go back for another longer stay. Now, I probably can't go to my college reunion next week. Now, it doesn't really make sense to take my 2-week Ohio trip, since I'll have CyberKnife smack in the middle of it. I am tired. I am sore. I can't exert myself or I might blow another hole in my lung and repeat this process. I don't feel like eating. I don't feel like doing any around-the-house projects (Pollyanna would tell me this is my chance for those very things!) Like the amp in Spinal Tap, I like to live at 11. Yet I am living at a paltry 3. And: The only cancer I have is so small, the surgeon couldn't even spot it on the scan. But...lest we forget, I did use the word "cancer".


I'm trying.

Monday, May 16, 2011

Buh-bye, tube

The chest tube was yanked out today. The act of pulling it out is a violent, gruesome thing. The whole experience was painful and horrible. I never want to get another one.

Neil and I felt like we should be overjoyed that the tube is gone and the lung is "up" (meaning, totally re-inflated), but for some reason we were both keeping our celebrations in check. This is the third time I've been released after a collapsed lung, and each of the other times it came right back. Time will make me feel better about this.

Because of all the recent trauma in my lungs, they want to hold off CyberKnife treatments til mid-June. NO!! I am going to have to call them tomorrow and try to get it moved back up. I can't wait that long.

Also, the doctor told me I needed to wait at least 2 weeks to fly. I was planning on leaving for my reunion in 10 days.

I have some thinking to do.

Sunday, May 15, 2011

Perception vs. reality

The thing that angered me most about this recent health crisis is that I HAVE FELT SO INCREDIBLY WELL LATELY. Really. Ask anyone who has seen me in the weeks leading up to this-- I do NOT seem like a sick person. I AM NOT "LOSING THIS BATTLE". I've been going to parties, dancing, taking care of the kids, running errands, swimming, you name it. You would never guess there is a thing wrong with me. I have truly been living like a person whose brush with the C-word was a thing of the past.

I think that's one reason this recent collapsed lung has been so hard on me.

After doing so well on my own, I truly hated the fact that a pesky complication from surgery was sidelining me. I hate that "Shelly's health" is even a topic of news again, especially when, collapsed lung and all, I FEEL healthier overall than 1/2 the people I know!

I hated being in the hospital. It did nothing positive for my spirits or sense of well-being. When you are there, it's a constant barrage of questions about your health history, and in my case, this involved rehashing the facts surrounding my '09 cancer diagnosis and the battle that ensued.

I frequently heard: "Aww, wow. YOU'VE had a rough go. Tell me, how they first detect your cancer?"

To which I wanted to reply:
"Yeah, let's really get into it! Just when I was starting to forget all those sad details. Let's relive those times! Especially considering the fact that I can barely speak from this chest tube, it seems like a smart use of my energy. Best of all, when your shift ends, I'll get to explain it to the next nurse!"

I also heard my fair share of: "So sad. Especially in such a young, healthy person with such young kids."
("Y'know, that NEVER occurred to me! You may be onto something there.")

And: "It was great meeting you, Shelly. And hey, don't give up the fight, ok?"

And how about this: "Do you have a living will? If you'd like, we have some great books on the topic."
("WOW. NO SENSE MINCING WORDS, IS THERE? YOU'RE RIGHT, I MAY DIE BY THE MONTH'S END, SO I GUESS I SHOULD GET ON THAT, ASAP. Besides, it'll give me something to think about while I lie here in bed.")

The kicker may have been when we heard a gentle knock on the door, and a kindly man walked in and said, "Mrs. Butler? Hello, I'm the hospital chaplain. I'm here if you need to talk. I understand you both have gone through quite a lot recently."

Ok. Yes, that was a very nice gesture. But I highly doubt they send in the chaplain to every Tom, Dick or Harr(iet) who show up for things like, say, tonsil surgery. His appearance just reaffirmed the unsettling notion that I am a "red alert" case.

To my own detriment, perhaps, I'm an extremely perceptive person. I can detect pity from others a mile away. I try hard to let certain comments roll off my back, but I can only take so much in any given time period.

The fact of the matter is that right now I am extremely laid-up. I have a very long tube in my lung and it hurts to move in any direction. But once they yank this sucker out, I'm going to be a-ok once again. So this is my invitation to you to follow my lead and get on board! This girl aint going nowhere.

Tuesday, May 10, 2011

My life in Tiger Country, (Longer version)

I have been unable to blog for almost 2 weeks, the reasons being either,
A) hospitalization/inability to move, or
B) feeling unwilling to spend my precious free time thinking more about all this.

Had I blogged, the posts would have either emerged as pissy, expletive-filled rants, or something from the Beatles during the Sgt. Pepper era. (Don't tell my neighbors, but this BlockWatch captain has been hitting the hea-vy ju-nk.)

So here are some highlights. I also wrote them out in a shorter form (see previous post) since this story has epic potential, and who's got the patience for that.

-Last Tuesday, I had a minor outpatient procedure to implant several "fiducial markers" (small gold seeds) in my lung. (I had this same procedure done to my liver, and it went off without a hitch.) The purpose of the gold seeds is to act as guides for the Cyberknife radiation beam, which I'm scheduled to get in two weeks. I am getting radiation because, as some of you know, I have a teeny tiny remnant of old cancer growing back at my former lung tumor site, and they are going to blast it. Then I'll once again be cancer-free.

Anyway, this tiny cancer "lesion" is located directly next to my aorta, in a particularly tricky and dangerous vascular spot for placing pointy foreign objects. Or as my surgeon put it, "This is 'tiger country'". They implanted just two markers, and even getting that many in was difficult.

In order to implant a gold marker, the doctor must puncture the lung with a small needle, then inject the gold piece. But complications can arise! You know how every time you undergo any medical procedure, even getting a simple shot, they tell you there's a small possibility you could develop a complication, like say, an infection at the injection site? Well, this procedure has potential complications, too, and I developed one. I developed what's called a "pneumothorax", (NEW-moe-THOR-ax) or a pocket of air in the pleural space around the lung. In other words, the puncture caused air to seep out of my lung and into the space around it. The more common term for this is "collapsed lung". It wasn't terribly bad, as collapsed lungs go, but i had to stay in the hospital all day for monitoring so they could determine the leak was in fact going down and healing. I went home Tuesday night. I felt like i'd been shot in the back, but I figured this was normal.

Last Wed morning, I was scheduled to work as "snack mom" in Rhodes' classroom. En route to preschool, I left my sister a perky voice mail, enthusiastically asking her how the new restaurant was going. While speaking, i guess I talked too fast or forcefully, because i suddenly started having this stabbing pain in my chest. I went to the ER for the day.

X-rays/CT scans showed two things.

1- One of my gold seeds had slipped out of place and fallen away. So I only had ONE seed left, and I would need TWO in order to have CyberKnife in two weeks.

2- My lung had developed more air around it. A "delayed pneumothorax", which is very rare. LUCKY ME. It was bigger than the one I'd had the day before.

By the day's end, the leak hadn't shrunk, but it hadn't grown, either. So, they sent me home with the explicit directions that i had to be very still and try to help the hole in my sac close. I rested on our couch, barely speaking, because apparently when I do, it's with lung-bursting enthusiasm. Neil ran what he called "Neil's hospital", where he was EXCRUCIATINGLY bossy about not letting me take calls, move too much, or even blow my nose, because we couldn't risk collapsing my lung further.

Ok, I have suddenly run out of steam to continue this play-by-play of my time in the hospital, of reliving that hell in detail. So I'm going to end this post here, and start a new one on a different topic. I would just delete this whole thing, but it took some time to write out, and maybe someone out there will find it interesting.

If you have any questions about my time in the hospital, I'll take those calls offline. Let's all move forward!

Sunday, May 8, 2011

My life in Tiger Country, (edited version).

Here is the quick version of my last two weeks, for my "just the facts, ma'am"-friends:

-5/3, Tuesday. My fiducial marker implantation was only 1/2 successful. One of the two markers fell out. It was a very difficult place to implant markers, in the first place, right next to my aorta, or "Tiger country", as the surgeon told me.

-When they pierced my lung, I developed a pneumothorax, or pocket of air in the pleural space outside the lung. When you get air out there, it makes your lung collapse. It seemed tiny and appeared to be healing on its own, so they sent me home. (For a bit more info on this, see the "Long Version" of this post.)

-5/4 Wednesday, I had to rush to the ER due to sharp pain when I inhaled. I spent a day in the ER. Against the odds, the pneumothorax had grown! But it was stable in size. I went home.

-5/5 Thursday--They admitted me to the hospital and put a tube in my lung. The purpose is to drain air from the sac around the lung, and thus, to reinflate the lung. They go in through your ribcage and stick a small pliable tube into the sac around your lung. It's about 8 inches of tube coiled up inside. Hellish pain, right up there with childbirth+back labor. Except a chest tube never lessens in intensity until they rip it out. Heavy narcotics and awful nausea. Trying to find the right balance between the two.

- 5/6 Friday, I had another procedure where they implanted 3 more fiducial markers. Only one stayed in place. So of a total of 5 markers, only 2 had stayed in place.

-5/7 Saturday morning, I had my chest tube removed. They rip it out, in one quick jerk, like the pulling of a lawn mower starter, while you are awake. Then I went home.

-5/8 Sunday, Mother's Day. Couch time and narcotics. Sounds dreamy,

-5/11 Wednesday morning, I learned that, YAY, my two fiducial markers were sufficient enough for us to do CyberKnife. But BOO, against great odds, the pneumothorax was back! This required me to be re-hospitalized, and hellishly, to get ANOTHER CHEST TUBE placed, and THREE MORE DAYS OF HOSPITALIZATION.

-5/14, Saturday (yesterday), they discharged me. The lung has been re-inflated for a few days, but they have not removed the chest tube yet just for good measure. It's still in place on the off-chance that if my pneumothorax comes back again. they won't have to repeat the process.

-5/15, tomorrow, I will have a final x-ray. If the pneumothorax is not back, they will rip out my chest tube and hopefully this will mean the end of this debacle. If it's back, they will admit me again. And I promise you I WILL lose my mind.

I've had this current chest tube in place for 4.5 days now. My left side is completely frozen up, with my left shoulder grotesquely slanted downward at a 45-degree angle from the muscles being completely contracted. I can't really move at all.

Sounds dramatic, I know. But I'm keeping my spirits as high as I can. Neil is being a star, so are my friends. This will be over soon.

Monday, May 2, 2011

Lung bling

Quelle weekend!

Friday night, we rang in Neil's 38th year. Tavolata for eats, The Nine Pound Hammer for drinks, friends, fun. It was a late night and I drank a lot.

Saturday night, we snagged an invite to the "Friends and Family" opening of Laura and Shannon's hot new restaurant, Little Water Cantina, in Eastlake. (A+. Seriously. The place is awesome.) Family, friends, fun. It was a late night and I drank a lot.

And, all week (month...year...) Rhodes has been sleeping like C-R-A-P, keeping me up and waking me early. It was a late night and I drank a lot of Pepto.

Then! Bin Laden is killed!

And! Tomorrow morning I go and get my lower left lung studded with gold seeds. This, of course, is the first step of my upcoming CyberKnife procedure, to blast the little bit of cancer that's in there. Brother Scott will be my chaperone, we check in at 6:30. Should be done and home by noon!

Thursday, April 28, 2011

April 29th. An historic day. CELEBRATE!

Tomorrow is Friday, April 29th. At just after midnight, Pacific Time, an event will occur that may or may not be on your radar, though people across the globe should probably be celebrating it.

Pomp! Circumstance! Tradition!

April 29th is Neil's birthday. He will be 38.

I need to point out a few things about my husband, reasons why he should be celebrated. He would certainly never do it himself.

1-Neil is made of steel.

I'm not just referring to physical toughness, though he IS one bad mo-fo. I mean strong and steady in the holistic sense. He passes every stress test he's given, quietly and consistently. Life has certainly thrown him 17 innings of curve balls in the last year, yet he never wavers, never complains--not ever. Just being around him makes you believe you can be that strong, too.

2- Neil lives for the people he loves.

I think there's a profound wisdom in the way he lives. He keeps it honest, simple, real, and light. He doesn't need a lot of "stuff", and there's never a shred of hubris. He's happiest when he's outside, in the mountains, on the beach, or just in our backyard, with his people.

3-Neil is a huge reason I'm alive.

People sometimes tell me I'm strong or brave. I've received a lot of nice accolades for how I've navigated this cancer suckfest. But let me stress something: There is another person who deserves to hear every praise. Neil has also fought this thing every step of the way, right at my side. In the times where I'm scared to the point of insensibilty, Neil is with me in the darkness, listing the reasons I have to be hopeful. Showering me with his belief in my strength, even when I can't see it.

Cheesy phrases like "unsung hero" come to mind, as do cheesy songs, like "Wind Beneath my Wings". But as I said, those are cheesy, and they would dork up my blog, so I won't mention them here.

Instead I'll call him the "Unrecognized Champion", or "The Air Pressure that Keeps My Plane Aloft". It's after 11:30, and my eyes are starting to cross... and I've got to wake up in 90 minutes to watch the pre-wedding coverage...

Happy Birthday, Neil. xo

Wednesday, April 13, 2011

Persistency. Not always a good thing.

After today's PET scan, I learned that the little spot in my lung is indeed cancer growing back. It's little, and it's at the former tumor site, which is good in that it's not anything NEW. My next step is to report back to the CyberKnife folks toute suite, do not pass go. Which I will do, right after I take a quick trip to coastal Georgia where it is sunny and 80 degrees.

And when I return, invigorated, I'll be ready to blast this latest bit of cancer to smithereens. I know what I have to do, and I will do it.

I don't have much else to say on the matter, so perhaps the best thing to do now is to quote Joan Crawford (Isn't that typically the best thing to do at any given time?):


Monday, April 11, 2011

See Spot. See Spot Burn.

The found a spot in my lung on my last CT scan. They can't tell from a CT scan if it's cancer, or just a weird spot. It's located right on the site of my former tumor. There's a CHANCE it could just be healing scar tissue. But I kinda think it's probably a little cancer growing back, cancer that never really died.

To find out what this spot is, I've got a PET scan scheduled this Wednesday.

If it is in fact more of the shit-for-brains cancer, I'll likely get radiation. Heck, maybe more CyberKnife! It'll be nice to don the ol' CK track suit again. (If only that meant "Calvin Klein tracksuit".)

As for my spirits, I feel rather calm about things. After a brief initial freakout, of course. I'm getting adept at handling less than optimal news. A skill I wish none of you have the occasion to acquire. I am fully aware that this is all happening, but it doesn't ruin my day by any means, and in fact, for a good part of the day I sort of forget about it. Then I remember, and a slight cloud reappears. But overall, I feel happy and healthy as hell, and I find myself laughing and "being Shelly" as much as I ever have. And these are the reasons I am not hysterical.

1- If it's cancer, it's tiny.
2- CyberKnife works on lungs. And CyberKnife works.
3- This wouldn't be NEW cancer. It's on an old site. New cancer is scary cancer. (wait: does that mean old cancer is friendly cancer?) HELLS NO.
4- This sucker is not going to kill me.

So there's the 3-minute update. I'll let you know when I know what the plan is from here. Perhaps I will know by Wed night. I hope so, because on Thursday morning I'm headed to Georgia for the wedding of one of my favorite people on this planet, Y'ALL.

Friday, April 1, 2011

No new(post)s is good news

Good lord, I realize it's been almost a month since I posted anything. "What gives, Shelldogg?" I don't have an answer to that, or perhaps more accurately, I haven't thought long enough about it to posit any theories. Give me time, I'll pop one out by the end of this post. UH-OH, IT'S A STREAM-OF-CONSCIOUS POST. Somebody get this girl an editor, please.

I feel like I should follow up on the various open storylines from my last two months, then we can march onward!

1- Surprise, surprise: Kauai was awesome. Yes, the tsunami came, no, it wasn't bad, though certainly interesting.

2-I will not know the actual effectiveness of my CyberKnife procedure for several months. Apparently, my liver will still gleam radioactively on a scan for some time, making it difficult to see what's actually happening (or better yet, not happening) in there. But soon, the dead tissue will darken, and all will be clear. I know it worked.

3-I do have a CT scan on APRIL 7 (next week), to see if the rest of me remains clear and normal. To me, this is really the crucial question. We knew the liver spot was probably still there. We know CyberKnife works. The scary thing would be if something new was suddenly growing. Because that would mean....IT'S ALIVE.

4- Based on the scan, we'll know what my treatment plan will be from this point on. Currently, and for the last few months, I have been on no medicines. Avastan injections may resume soon, continuing potentially all summer even if I'm symptom-free, reminding me with every poke that yes, this cancer I had was a very big, bad one, but I am somehow beating it.

5- I feel SO VERY WELL. Normal. Healthy. Strong. Unafraid. Balanced. Grateful, even. With a bourgeoning sense of perspective. I think about cancer less and less all the time. I guess that's why I haven't been writing. You know I'm truly feeling okay when I pour my energy into living my life, not writing my blog. Take Q4 of last year as an example. Remission hit, then the radio silence began. AND THE READERS WEPT! (Ok, there it is. The answer to my opening question. I knew I'd figger it out by the end of this entry).

BUT, 6: I still have lots to say, many thoughts, coming at me quicker than I can possibly write them down, on topics more interesting (to me, at least) than the inner-workings of my mind as I navigate yet another cancer procedure.

What is the so-called "gift" that cancer brings? What minuscule rubies have I found embedded in that burning box of shit on my doorstep?

They are starting to reveal themselves to me, subtly. Everywhere, all the time. It can't be summed up in a word, more as an evolution in my perspective. Sometimes it arms me, sometimes it steadies me, helping me cast away the inessential stuff and to feel light about things.

I don't mean to get heady on you here. I suppose I just want you to know, whomever you may be, that I don't view this entire experience as a loss. But I'm not ready to call it a gift, either. I need to get a few years behind me first.

Tuesday, March 8, 2011

Done and done!

Yeehaw! Quick status check:

After last week's "liver pain", I took a few Aleve, and I very quickly returned to 100%. So, Monday morning, I completed the last of my 5 CyberKnife treatments. In case you are wondering, it makes no difference that I waited a few days to complete that last session. It's just as effective. They said it was best that I let my liver "cool down", anyway, just from a comfort perspective. (From now on, whenever you think about my liver, please imagine the song "Hot Stuff" playing along in the background as its soundtrack.)

This technology is so new, I'm only something like the 1200th patient to receive it in Seattle. And for those of you who watch primetime television, you know that Seattle is not exactly some podunk, one-horse outpost of the medical world.

Anyway, for all practical purposes, we can now consider the only known cancer in my body to be dead and blasted to hell, effective immediately.

And with that, I leave for Kauai (sans kids) this afternoon, feeling on top of the world in every way.

I would close this post with "Aloha", but it feels too forced. Kind of like saying "Auf wiedersehen" to close out a blog post about Wagner. Does that make sense? I don't care if it doesn't, because I am now officially "on island time"! (Neil and I actually saw a pale woman at our swanky Maui resort last year wearing a long kelly green teeshirt coverup that read, in large white letters, "I'M ON ISLAND TIME." NO!!!)

Sunday, March 6, 2011

Happy birthday to me!

Feeling great today! Good as new!

Here's to 37 more-- (and more than that!)

Thursday, March 3, 2011

Slight change of plans

80% done.

I don't have the flu. I do have pain in my liver. I think it's my liver. Not horrendous, but I do feel like I've been socked in the gut. They tell me that is sometimes a side effect to CyberKnife. But they want to make sure it's just that and not anything else. They are going to hold off on tomorrow's final treatment to give my body a chance to heal for a few days. It's rescheduled for Monday, assuming I don't feel worse.

I have lots of anecdotes and more information -- and I'd write more, but honestly, I'm too tired, and I just don't feel very well.

Miracle Cure!

Before my radiation treatment today, I decided to duck into Starbucks for some hot chocolate and chocolate chip banana bread. As the fellow rang me up, he yammered, "SOMEbody likes CHOC-olate..."


Perhaps wanting to ensure he hadn't offended my feminine sensibilities, he blabbed on, "Naw, naw. It's cool. It's all good. Seriously, chocolate's amazing stuff. Honestly. It fixes ya right up. Cures what ails ya. Y'know?"

I hoisted my cake in brotherhood and managed, "You got THAT right."

The hot chocolate was prepared and handed to me, and I turned to walk out. As I passed my chocaholic friend, he caught my eye and added, loudly, with a big smile: "Now you go ahead and tell me what in your life THAT aint gonna cure!"

Ok, seriously? Did he really just say that to me on this day?

Oh man, this is too good. I paused. Such a nice guy, IMAGINE if I dropped the C-bomb on him right here and now in the middle of Starbucks? I almost started giggling at the painful scene that would follow: The sudden, awkward silence. The redness rising in his cheeks. The anguished backpedaling.

Again I am reminded what a STRANGE arrow I now carry in my quiver. The ultimate trump card. The instant, guaranteed conversation killer.

Of course I would never use it like that. So instead, I grinned and replied, "NOT-A-THING, not a thing. You're right. The whole day's looking up from here!" He winked at me, and I walked out.

Wednesday, March 2, 2011

"We'll leave the light on for you", NEIL.

60% done.

It's been a crazy week in our home. Neil has been sick with a very nasty stomach flu for 3 days, and he barely left his bedroom that entire time. He'd sleep for 10 hours DURING THE DAY. Also, he'd get violently sick at times. Clearly, this bug was not something I wanted for myself. So, in the spirit of our "in sickness and in health" wedding vows... I almost sent him to a HOTEL. That makes me sound like a heartless bitch, yes, but think of it: I didn't want to jeopardize my chances of getting this CyberKnifing completed this week. Not to sound dramatic, but my life kind of depends on it. We've been planning it for months. The procedures, the scans, everything had to be timed perfectly. I worried that a wretched flu could potentially render me incapable of lying completely still on a table every day for over an hour. In the Cyber(Knife)World, you can't exactly get up and run to the bathroom to barf anytime you want.

I called my mom to run the hotel idea by her. I opened the call with, "I think I'm going to ask Neil to leave home." A little context might have helped. Poor mom. Like I'd start divorce proceedings THIS week.

I then asked a doctor friend (WLS) how to avoid getting such a bug, and she suggested this was probably not an airborne illness, so he could stay home, though we should use separate bathrooms.

We decided to quarantine Neil to our bedroom and the upstairs bathroom. He called the room his "pen". He was home from work for 2 days, and I avoided him like the plague. One home, two parallel lives, never intersecting. It was our little trial dysfunctional marriage.

Today, Wednesday, he went back to the office, but I awoke with a sharp stomachache. I started cussing like a sailor. (truck driver?) (dentist?) "IF I CAUGHT THIS FREAKING FLU, I WILL BE SO PISSED OFF!" That's the g-rated version.

Oddly enough, the stomach pain has lasted all day, but it has not led to anything greater. (by "greater", I suppose I mean projectile manifestations of the flu). The stomachache felt very high, just below my ribs. Then I started to wonder, "Wait, am I having LIVER PAIN? I mean, they are quite literally killing part of that organ as we speak. Maybe that smarts a bit?" I wasn't told I'd have any pain, really, only fatigue. And after today's 'Knifing (at the clinic, they call it "therapy", but I still prefer the term "'Knifing"), I definitely felt VERY TIRED. But what's all this moderate (not severe, but annoying) pain? I feel like I got socked in the gut. Is it the beginning of a flu? PLEASE NO! Stay tuned.

ps- My mother-in-law deserves a big ol' pat on the back for being so helpful all week. She even stayed extra long today and picked Betty up from school so I could rest.

Monday, February 28, 2011

"Meet Lenore"

I'm 20% done.

My first CyberKnife session went as quickly and easily as they had advertised. I arrived at 1:15, and a radiation therapist (not "nurse") led me way back, past the exam rooms, through a thick door marked, "Warning! Heavy radiation!", or some similar suggestion. Despite this admonition, the large room felt rather warm and cozy. And there, in the center, stood this large (10 foot?) white THING that reminded me of a cross between a modernist T-Rex sculpture and one of those Imperial AT-AT walkers from The Empire Strikes Back.

"Meet 'Lenore'."

I examined the CyberKnife machine. It looked powerful, but friendly enough. The radiation therapist continued, "She's quiet. You won't even know she's working."

"'She', eh? It's a girl?"

"Yep--LENORE." (in case I missed that the first time.) I felt like I should react somehow, as you would when meeting an actual person. But all I could muster was the lame, "I guess SOMEBODY around here is a fan of Poe." Neither therapist seemed to catch my reference, which was just as well.

I donned my referee shirt, got on the table, and we started. They attached small red LED-type lights to my white stripes, to help the machine better see my breath rising and falling. For the first 15 minutes, the therapists entered and exited the room frequently, tugging my shoulders a half an inch to this side or that, sliding my waist down a bit, readjusting my blankets and straps. Finally they announced "We got it!", and I was in the exact right position. They told me to hold very still, but if I needed to move just slightly, I should do it when Lenore was moving, not when she was still, shooting out her invisible beams.

They left the room. I lay there, comfortably, my eyeballs rolled back in my head attempting to catch a glimpse of Lenore, who was just behind me, waiting.

Suddenly, she jumped to life, like a raptor stretching out after a long nap, expanding, twisting over to me. She racheted her laser nose around and down to get a glimpse at my torso. Like prey, I lay, watching as she moved over me. She seemed to be studying me, considering me from different angles, stopping every so often to think before twisting and swinging her neck in a different direction, always with an eye on my torso.

I felt nothing. After a bit, I started to feel sleepy. My mind started wandering in the way it does just before I fall asleep. I was remembering my elementary school building, and some of my classmates. A voice jolted me back to reality, "TEN MORE MINUTES, SHELLY, YOU'RE DOING GREAT!"

Lenore continued her elaborate radiation dance, and then, just as noiselessly as she began, she slowly retracted, folding back into her resting position. The lights came on. I was done.

As I walked out of Lenore's lair, I passed the technician at his computer. "Want to see your images?" The screen in front of him reminded me of a surveillance screen, with four different views into my torso, all in x-ray. He tapped the screen, "Those 4 bright spots are your fiducial markers" (gold seeds). He pointed out a few organs, and I was clever enough to recognize my spine all on my own. "See you tomorrow at 1!" he waved.

I exited into the waiting room. Only once have I ever seen anyone else in there. Today, a 50-something mother sat with her 20-something son. I looked at them, and they at me. "I just got 'Knifed", I told them. She looked at me and smiled, "Uh-oh!"

I validated my parking at the reception desk, then left. I wondered, "How will the garage know I've already paid?" so I inspected the ticket. I couldn't believe it. There at the bottom, it said "Toledo Ticket Company, Toledo, Ohio." Home. For some reason, that made me feel happy.

Sunday, February 27, 2011

CyberKnife Eve

Kind of like Christmas Eve, but with more radiation.

So the plan is finalized. I have 5 sessions scheduled for this week. I'll be getting zapped for 90 minutes, M-F, beginning manana.

This is a great thing, right? I have a cancerous tumor, and they are about to kill it swiftly and effectively. So why am I feeling this unnamable anxiety? The type of feeling that noiselessly, soundlessly seeps into an otherwise happily unremarkable day, causing things to grey up a bit. Carbon monoxide in my garage.

At this point in my life, when I am feeling this way, I have to sit myself down and have a little talk. Which I did, tonight, over a bag of Skittles, just after the "Look Who Died This Year" -section of the Oscars. I isolated the disparate parts of what I was thinking and feeling, and considered each of them separately, to see if it was THAT thought which was the real problem. In order to figure out how to make myself feel better, I had to first figure out what specifically was scaring me.

Was it fear of being on that table and getting zapped? No. Actually, I need to get this thing done. It's going to make me better. It's a good thing, don't be scared of that, Shelly.

Fear of the tumor not actually dying? Not really, no. I have faith in this procedure. It's gonna work.

Ok, then, fear of death? Umm...Not really. I actually don't feel like I'm headed that way any time soon. Can't say why, except that I feel so damned strong and healthy. And everything has been going well for me, more or less, since my diagnosis. I keep getting better. (This one minor liver setback being the exception-- but it's just a setback, not a loss.)

Ok, good. So what then? Fear of abandoning loved ones? Nope, not this time. See previous thought. I am ok on that for today. (This is one of my biggest fears, so I always have to consider it).

And I went through the list. Eventually I realized that it's pretty simple. Any fussy new procedure I have to endure just reminds me that I have cancer, and I don't feel like being reminded. That's all it is. It'll be just another experience to file away in my brain's "Cancer" folder, that thick, crappy folder, full of strange, scary, painful, and occasionally poignant and hopeful, experiences. I'd rather be doing something else this week. That's all.

So you'll be happy to know that now I go to bed feeling brave and no longer scared, fully aware that this is an important opportunity for me, a necessary one, something to look forward to, really. I also know that I still hate cancer and would rather be spending my time in other ways. So aside from CyberKnife sessions, I WILL. I plan to make every day remarkable in its own modest way, somehow.

And why do I share this with you all? (Aside from attempting to dazzle you with my complex thought processes and captivating internal monologue?) (And all of this withOUT a phD?! Can I even afford my own billable rate?) I guess just to show you that this experience is a layered one, requiring lots of reflection and analysis at every turn. There's not a lot of "autopilot" in navigating cancer, unfortunately. Always something new to think about. Never a dull moment, I suppose.

Thursday, February 24, 2011


Last Tuesday I had my CT planning scan, which is a scan of my body (tumor included) as it appears right this very minute. The point is to determine the precise size and location of my liver tumor, and from it, they will draw up the plan for the CyberKnife machine to zap it. The zapping will occur Monday thru Friday of this week. I will lay on a table wearing regular street clothes, while a machine moves around me soundlessly and painlessly zapping, and in 90 minutes, I get to leave. I will do this for five days, then the tumor will DIE.

Let me tell you about this scan experience, though.

I've done a lot of scans, so I kind of have the routine down pat. I am proficient at fasting, I know in which garage to park, I know what to wear. In fact, I even have a scan outfit (one's clothing can't include any metal, including zips, snaps, underwire, etc., as they could interfere with the imaging.)

On Tuesday morning, I went to find my "scan pants". They're sort of loose-fitting black yoga pants. I could not find them anywhere. All my other pants have some sort of metal rivets or zippers. Strapped for time, I had to resort to wearing my second-string outfit, my TIGHT black yoga pants, the ones I wouldn't wear outside a gym unless I had a long coat on. They are black with a sporty white stripe up each leg. I paired it with a cotton hoodie, which happened to feature green and white striped sleeves. Relevance to follow shortly.

As I sat in CyberKnife waiting room, a nurse walked up to me and warmly announced, "Hi, Shelly. Nice to meet you. I'm going to take your picture." FLASH! Apparently this is for the cover of my "folder". It will be a nice deer-in-headlights-in-waiting-room shot of me, and I'm hoping for an 8X10. She then asked me to stand up, and said, "Ok, you're going to need to put this on." She was holding what looked like a black spandex tube. "It's a shirt, a vest, really, that you'll be wearing during treatment. Just go ahead and put it on over your shirt." She helped pour me into it, and once tucked inside, I could not only see the contours of my ribs, I believe I could see the oval indentation of my belly button. I simply cannot believe one size could ever fit all. I looked down and was pleased to see that, like my pants, it was black with thick white stripes down the front. Paired with my green/white striped arms, it was quite an effect.

We left the CyberKnife office and walked through labyrinthine halls, past bustling waiting rooms and crowded lobbies all the way to the CT scan area. It pleased me to no end that I took the grand tour while dressed like a sexy referee.

I sat in another waiting room before my scan. Five others sat around me. Bored, I began playing with my new iPhone and started flipping through my photos. I thought, "Actually, Neil will appreciate this outfit", so I extended my right arm and took a photo of myself. Being an iPhone newbie, I had turned on the video camera function and accidentally filmed a short movie, so I had to adjust and re-shoot. The second photo was blurred. The third photo was not centered, cutting one sleeve cut off and omitting half of the ghastly striped effect. My fifth effort was finally acceptable. Suddenly, it occurred to me that the others were watching me, just sort of staring. Great. Imagine: 'Oh look at you, you narcissistic blonde in your skintight zebra outfit. When you look THAT sexy, I guess you need to take a photo--or six--of yourself.'

Once inside, I had to lay on a special mat. They sucked all the air out of it, forming a perfect mold of my body. This is where I'll be during the 'Knifing.

The scan took just a few minutes. The contrast material they shoot into your IV makes your whole body feel very hot, giving you the sensation that you've wet your pants. (They always warn you this will happen, and they tell you not to worry, you HAVEN'T actually wet your pants. I always say, "I KNOW, I know. This like, my 10th scan or something.")

Next steps: Plans are drawn up, CyberKnifing will occur. Onward ho!

PS- In case you were wondering, the purpose of the striped vest is to help the machine see when I'm breathing. It literally rises and falls with each of my breaths, zapping the entire time. VEL-COME TO THE FUTURE.