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!