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.

Thursday, February 17, 2011

Gold teeth are so 2006.

Today was the first of my CyberKnife procedures. I had my "fiducial markers" implanted in my liver.

(I still can't believe I am writing this. It sounds like science fiction. I could be making this up for all you know.)

We checked into the hospital at 8 a.m. The procedure involved sedating me with Fentanyl and Versed, then giving me a CT scan to locate the "lesion", then inserting gold pieces about the size of the tip of a pen into the area around my "lesion". They did this with a needle that went deep into my gut, and the gold piece was sort of injected down in there. They put in four, and yow, I really felt the last two go in. Enough so, that even in my drugged state, I demanded more drugs. WHAT A PAIN IN THE LIVER! Later in the day, when we were out and about, I would occasionally complain loudly to Neil, "Neeeeilll....My liv-er HURRRRTS." I got a few looks. I'm sure I sounded like the most high-maintenance wife in the world, complaining so specifically and preposterously.

A few interesting things about today's procedure: One, they tied me down. THEY TIED ME DOWN! My arms were placed over my head, and they used these soft lavender-colored ties to keep my wrists immobile. Then, of course, THEY BLINDFOLDED ME (ok, they covered my eyes with a cloth), to protect me from the laser.

So. I spent my morning tied up and blindfolded while solid gold particles were injected into my liver. What did you do?

One other thing. When it was over, the nurse asked me if I remembered what everyone in the room had been saying about me. I couldn't recall. She said, "Oh, we were just all commenting about how you looked so beautiful lying there, hair fanned out, eyes closed, so still... just like Sleeping Beauty."

Now THERE'S an interesting twist to that fairy tale story.

Friday, February 11, 2011

It's scheduled!

After going round and round, and after putting my doctor on the phone with the insurance doctor, insurance has DENIED coverage for the "scan" portion of the CyberKnife treatment, but is covering other parts of it. It's asinine, as it shows no understanding of the procedure itself. (You can't treat an area with radiation until you've first scanned it to see what's inside.) We aren't doing the scan for kicks, are we. And a two-month old scan of a rapidly-growing tumor isn't a current scan, is it. But alas, we are moving forward!

Here's my schedule:

Thurs, Feb. 17th- Fiducial placement procedure (aka planting gold seeds in my liver).
Tues, Feb. 22nd- CT Scan, which we'll just go ahead and pay for because like they say in the L'Oreal ads, "I'm worth it."
Week of Feb 28th- Let the 'Knifing begin! It should start and conclude by that week's end. It'll be a little early b-day present for me (March 6th) because I really like to pamper myself with the latest trends.

March 8-13 - off to Kauai.

Thursday, February 10, 2011

The Firefighter Song

I emailled this lil' anecdote to my family today, but it still cracks me up, so I thought I'd share it here, too:

Today in the car, Betty asked me out of the blue, "Mom, what's sex?"
I tried not to look shocked and stay calm, "Um, where did you hear that?"
B: "It's on the radio right now. The guy is singing, 'This sex is on Fire!' So, what's sex?"
Me: "Oh! oh yes, so he did. Actually, um, what he said is, 'This section's on fire.' So. That's what he said. Section."
B: "Section? What's a section? Why is it on fire?"
Me: "Umm. Yeah! That's a really great question! So, you know. Section! Like, this section of the house, it's on fire. That section over there, it's not on fire, but this section is. It's probably a firefighter singing, actually. Talking about his job. That's all."
A few minutes later, Betty said, "I want to hear The Firefighter Song again."


Two worlds collide

Today I had to visit the Cancer Institute to give a blood sample for my upcoming procedure. (more on that in another post). It happened to fall on the same day as my daughter's annual checkup. So I combined the two errands, one after the other. I told my daughter that "both Betty AND mommy will get shots today! So let's both be brave!"

I've never taken the kids to Swedish Cancer Institute before, even though I go bi-weekly. We entered and the kids burst into the spacious, airy waiting room with an excited flourish-- a far cry from the entrances most patients make. There were dozens of people around the room, and because of the noise we made, most eyes turned in our direction. I guess I wasn't really prepared for the experience I was about to have/create.

Betty ran (why do kids always run?) up to the front desk and announced, "Hi!!" The sleek brunette who has checked me in dozens and dozens of times looked down and spoke in a voice I've never heard her use, "OOOHH! ARE THEY YOURS?! You have little ones? THEY ARE SO SWEET!" The other receptionist said, "Look at that little guy! He's MY favorite. Look at him, acting like he's the boss." The women both looked at me and I could see their minds working, digesting this new, slightly more interesting information about me. What an incomplete relationship I have with them. They know a whole lot about a very little part of my life. But they don't know the first thing about the rest of me.

I said, "I'm here for some lab work" and as the receptionist found my lab slip, Betty told her, "Mommy's gotta get a shot!"

Then the kids turned and bounded over to the huge saltwater fish tank, plopping themselves on the adjacent chairs (which have rarely felt such enthusiastic little knees on them, I'd venture). I could feel a lot of eyes on me. And I realized. Wow. I'm that poor, sad person you read about, the young mother, trying to do-it-all! while also fighting cancer. It's funny because though I'm aware of the facts surrounding my situation, I don't feel like a living sob story. Still, it's unsettling when you can see this sentiment reflected in other people's faces.

Betty said, "I like that one! Look at his mouth, Rhoey! He got big orange lips!" And Rhodes proceeded to make fish lips, his new trick that never fails to crack Betty up. Betty, wanting everyone to share in the big joke, turned and said to the general crowd, "Oh my gosh, look at my brudder. He got a fish mouth now!"

Next to the tank sat a woman in her late 50s-ish. She wore a headscarf. The kids continued pointing out interesting fins and coral, and Betty said, "Mom! I like your doctor office! They got good fish!" At this, I noticed the woman almost imperceptibly shaking her head, and I noticed her eyes began to well with tears.

I moved us along. In the center of the room, I passed a beloved nurse who stopped me, "Shelly! It's so great to see you! I haven't seen you in ages!" Then in a lower voice, "What brings you back?"
"Oh, just got a little radiation coming up. Cyberknife. You know."
She said, "Oh dear, and this is for....?"
"A little spot on my liver."
Her hand went to her mouth.
Me: "But it's the same old spot! Not a new one."
She exhaled in relief. I looked just behind her, at a row of elderly folks catching our every word, their eyes moving from Betty's bright green and pink flowered dress to Rhodes' sturdy little fireman rainboots to me, then back over the three of us again. She continued, "So they're just gonna blast that. And that'll be that." (side note: the nurses I deal with are angels. They speak with conviction and they CARE.)
We shared some stories about a friend we share (SSH), she gave me some good pointers on how to maintain my port, which currently isn't being used, thank heavens (no chemo), then we parted ways.

The kids had somehow wandered off to a supply closet I never noticed before. I went to retrieve them, and in this corner was a wall with thousands of multicolored ribbons tacked to it, many of them signed. These are of course the ribbons people wear to show support for various types of cancer (breast is pink, colon is a medium blue) and Betty ran her fingers over a light blue one and said, "Ooooh, this one's pretty. I want this one." And I said a little too forcefully, "No you most certainly do NOT want that one." A stupid retort on my part, really, intended more to be clever or for adult ears, I guess, not for her, and she looked confused, so I ushered her back.

When I returned to the center, a few people were sort of pointing at me, and I realized they had called my name and were looking for me. The three of us went back into the lab (again, staffed by angels), and the folks quickly worked to divert the kids' attention. They handed them hard butterscotch candies, which instantly got the kids' attention, though I worried about them choking. I announced to the kids with fake enthusiasm, "ok! now mommy gets her shot, then we go on home!"

The lab tech tied the rubber band around my arm and prepped the vials. Betty looked up at me and stopped licking the butterscotch disk suspended between her fingers for a second, "Mommy? Does it...hurt?" "HO NO! IT'S FINE! DOESN'T HURT A BIT!" Her eyes locked on mine and she reminded me, very quietly, "Be brave."

(God, if only you knew.)

Another nurse I knew stopped by "I heard you brought your KIDS! OH MY GOSH, ARE THESE YOU KIDS? THEY ARE A-DOR-ABLE!" Another nurse took Betty by the hand, telling me, "She dropped her candy on the floor, I'm taking her to wash her hands". Rhodes walked away from my station and out of my view, but from the cooing and ooh-ing about 10 feet away, I knew he was in good hands.

Finally, we got up to leave. Each kid was given a spare hard candy (which I hid) and a celebratory band-aid. As we walked out and waved hi/bye to yet another nurse, Betty announced loudly, "Wow, Mama, you know EVERYBODY HERE!" I noticed a collective wince from the people as we walked out.

Wednesday, February 2, 2011


You know what's annoying? Waiting for weeks before you can begin treatment for a GROWING CANCEROUS TUMOR while your insurance shuffles their papers. I have been sitting here patiently, awaiting approval for my Cyberknife treatment, all systems go... waiting... Come on, insurance. This isn't elective surgery. I'm not having veneers put on my teeth. I'm not fixing my "deviated septum". It's a little hard not to dwell on the fact that with every blessed day that passes, that tumor gets bigger and bigger, and who knows if it's sending little cancer bits out into my bloodstream to take hold somewhere else.

Fun stuff to think about! It's the kind of thing that makes you miss noticing the light when it turns green.

This whole cancer process. I swear. It tests you in every way imaginable. It forces you to become a master test taker. And just when you think there couldn't possibly be any more questions, they add an essay. In Mandarin.

After this crap is all over, I swear, I could test my way into the FBI. Or become a Navy Seal. I've always liked the water.