28 September 2009

The Sacrificial Johnny

Rad # 35 -- Today, 11 a.m., DF L2
Tomorrow marks the end of a seven-week journey that began with gamma rays and meditation and ended with second degree burns and Percocet. Radiation -- or "rads," as the cool cancer patients call it -- blindsided me in its degree of suckage. My Irish/Italian skin is no stranger to sunburn, having sizzled with baby oil and other foolish grease during my teens and early 20s. I figured a religious application of aloe would suffice just as it had in sunburns past. But these are not normal sunburns. These are like nuclear holocaust burns. I'm torched! If anyone knows where I can rent a hyperbaric chamber, please let me know.

After 35 rads, I'm pretty freakish. I'm hobbling around, Igor-like, and can't swing my arms when I walk. Simple cotton T-shirts are like an all-out assault on the torso. That's the physical toll. I'm fried mentally as well. Every day since August 10, I’ve driven to the DF for an 11 a.m. appointment. I've suited up in a johnny, gotten blasted, and then driven home in a mesh tube top jury-rigged with Aquafor and an ice pack. By 3 p.m each day, I've collapsed in a heap, narcoleptic. Waah. BUT.. all this slashing and burning seems to be working. And now, there's just one treatment remaining! Just as hair grows, skin heals and energy recharges. Within a few weeks, things should be back to some semblance of normal. And, overall, I've had it pretty good. Things could have gone far worse.

Aside: Whoever invented Aquafor needs to be glorified from on high.

(TBB)

Still, today at the DF, something snapped in me; it was similar to Easter Sunday when I hurled my clogs into the brook behind my house. This time, I focused my frustration on the shapeless, generic johnny and all it represents. It's the gown of the sick, designed for intrusive treatments; its faulty twill ties are the culprit of many unintentional ass flashings. After I changed back into my regular clothes today, I seized the johnny. I was going to chuck it out the nearest window and watch it flutter down onto Binney Street. Then I remembered I was on the basement floor of the DF. Curses! So I balled it up, stuffed it in my purse and beat feet out of there. I am going to do to the johnny what’s been done to me for the past seven weeks: I’m gonna burn the MF.

For awhile now, I've been planning a "Fuck Cancer" bonfire where I will incinerate all tangible memories of cancer -- the headscarves and wigs, the jeans and yoga pants that I wore to chemo and radiation over and over again, my eyebrow kit, a pair of North Face flip flops, and maybe even a few organic yogurts for good measure. The whole idea of this bonfire delights the tiny pyromaniac that lives inside my soul. Last month, James and my nephew dug an old school firepit in my yard, the primary intention being a gathering spot for this fall -- roasting marshmellows, drinking wine, and watching football (many thanks to our dear Rowlettes who have provided the outdoor TV for this endeavor!). But I also plan to do some hard core destruction out there once my treatment is finished. While I'm not officially finished until May, I'm going to sacrifice the johnny tomorrow evening to mark the end of rads. Milestones!

Rad One -- August 10th, DF, L2
The radiation therapists are a bunch of good looking extroverts in their 20s; they've gathered in the treatment room to check out the tattoos on my chest. This is not some strange fantasy. A fews weeks earlier, my radiation oncologist tattooed a smattering of freckle-sized dots across my radiation fields. This is done so the therapists can line up the radiation beams in the same spot each day.

This is an awkward situation for me but the therapists are thoroughly unfazed. All of them appear to be gifted in the art of small talk. These are exactly the kinds of people you want hovering over you when you're lying topless on a narrow table, arms in straps over your head, your disfigured body and jutting scars on full display. They are true professionals who look you in the eye and ask you about your weekend plans while they are drawing dotted lines on your chest (connecting the tats!) with a green Sharpie. For a few moments, I don't feel like my dignity is hanging by a shred, I feel like I'm at jury duty. It's almost casual.

Rad Random -- Tues., Sept 22nd
A rotund young man singing opera by the elevator banks in the parking garage -- in Italian and everything.

Rad (Crap!) -- Mon., Sept 21st
With only a week left, my radiation oncologist decided to she wanted to add on a few extra treatments because of some internal mammary nodes that looked "hot" (aka cancerous) on an MRI that I had back in Jan. Apparently, cancers in the internal nodes are most likely to spread and/or recur. For me, they were the nodes that made the difference between stage 2 and stage 3 (and right now, I'm a stage nuthin). So, the doc said why not throw everything and the kitchen sink at this thing now to give us a better chance of not having to do it again later. Yes. Yes, please. LDT. Let's throw it all out there -- kitchen sinks, cafeteria trays, plastic bags of deli meat -- whatever works. I don't want to ever do this again.

Rad Pals
Going into the DF every day, you start to see the same people over and over again. Overtime, you develop a camaraderie and adopt a set of unspoken rules. For instance, there are no empty platitudes thrown around, no words about thanking God every day for the gift of C. Everyone here is all too aware of how much this sucks. If prayers are offered up, they are for the strength to get through it all -- for us and those who have to deal with us. Another rule: When it's someone's first day, whoever has been there the longest sort of welcomes the new person and explains what it's been like, etc. Most important rule: Be positive. Nobody needs to be brought crashing down on their first day of rads when they have 30-40 more ahead of them.

Here are some of the pals (names changed):

Stats:

Mary (lung), age 72.
She is Florence Henderson with a brogue. A beautifully-dressed, positive force of energy. Most days she worries about how her husband of 49 years is handling all of this. She talks about their place in Florida and how she can't wait to get back there when she is better. All around lovely woman.

Lisa (breast), age 37. Just got married last year and was trying to get pregnant when she was diagnosed. Had her eggs frozen pre-chemo so she can get back to her plans next year. She has the exact same diagnosis as me, but had a really tough time with chemo and is still on crutches because of neuropathy. She has no tolerance for whining. She's always smiling, always compliments people on their hair growth, and loves the word "frig."

Stephanie (breast), Newton, age 44. On oxygen (no idea why she's on oxygen). Like a thundercloud in the room. Always discussing her ailments and general misery. Seemingly oblivious to the fact that out of the four of us in the room, she's got the best prognosis. A total camel.

Enter Ruth from Dorchester (lung), age 62. She walks through the waiting room, having just finished her first radiation treatment. "That was like getting abducted by aliens!" she says. We all laugh. Ruth works at Brigham & Women's; she just had surgery, and will be doing rads on her lunch hour every day. She has 6 kids and 18 grandchildren. She jokes that she doesn't know half of their names. "Every now and then one of them runs through my kitchen and I say, 'Who the hell are you?'"

What we say to Ruth:

MARY: We just do the best we can. We are lucky to live in Boston, we are in the best possible place.
LISA: Yes, Boston is the best city to get cancer in, no doubt.
ME: This place gives you confidence in your treatments, which has got to help with healing on some level.
STEPHANIE: “That's all true, but unfortunately, cancer always wins.”

UGH. I could hear the Debbie Downer “wuh wahh” hanging in the air. MF camel.

What we say to Stephanie:

ME: Not always.
What I wanted to say: Whatever, keep fucking that chicken.

MARY: Now, now.
What Mary probably wanted to do: Hurl a waiting room chair in her direction.

LISA: [Blank stare]
What Lisa probably wanted to say: Why the frig are you on oxygen!?

Absolutely astounding. Stephanie will say she's just being "honest" and "a realist" but the only reality is that she has a shitty attitude and personality. Another reality: Five years from now, Mary, Lisa, Ruth and I will all be alive and kicking. In the meantime, I'm sure Stephanie will have found something else to die from.

Just then, a man pushing a catering cart enters the waiting room. He's got Poland Spring, Diet Coke, Sun Chips, Power Bars and a ton of Fig Newtons on offer. His name tag says "Jesus," and since he's a young Hispanic man, I'm assuming he goes by the Hispanic pronunciation.

Then Ruth -- arms raised like she's celebrating mass -- cries out: “Praise the Lord! Jesus is here!" (New Testament pronunciation)

Holy crap.

We all look at her, horrified. Jesus tosses her a bag of Sun Chips. Apparently, Ruth knows him from the Brigham and this is the way she always greets him and his snack cart.

In the corner, I see that Stephanie has crumbled into convulsive, soundless laughter.

Perhaps there is hope for the camels, after all.

Tsang's Willage Cafe, Thursday, Sept. 24
My BC-surviving friend Julie and I met over some Chinois and dirty martinis. I schlepped in, all stooped over, still wearing my mesh tubey under my clothes. Having been there, done that, she immediately knew what to say as she's known the unspoken rules all along: "I know I never told you this before because I knew it would've been the worst possible thing to hear. RADIATION SUCKS!!!!"

Time to let it rip. I told her I couldn't wait until the 29th, to be done, and she gave me more words of wisdom about managing expectations. She told me how she and her husband planned a night out on the town the day she finished radiation, got a hotel room and everything. Unfortunately, she felt awful. Even though she was psyched to be finished, she was still burnt and fatigued. She reminded me that even though you're ready to be done and want to just snap out of it and be back to normal, it can take a few weeks to get there. Her first reaction when coming out of treatment was being hit with a "What the fuck WAS that that I just went through?" You're focused so much on the daily grind that stepping back from it all can be overwhelming. So, it'll take some time before it's a blip on the radar (still my favorite metaphor), but we'll get there.

Speaking of which, there was a great piece in Sunday's Globe on how metaphors help us make sense of the world around us. So here's mine for the day:

Cancer is the bug that hits you in the mouth when you're trying to do your job. It knocks you off your game for a little bit, but then you recover and carry on like it never happened. In short, it's a blip on a radar, as illustrated by this awesome guy:


13 comments:

Anonymous said...

Kate, you make me laugh and you make me cry. You and P have continued to be an inspiration to all of us. And, yes, fuck cancer, and I would love to be at one of those bonfires. Love you. Lynnie

Anonymous said...

Kate - you seriously ROCK out loud - I think of you so often and hope you are doing okay - I'll be sending positive thoughts to you as you finish up this johnny throwing cycle. I will also be thinking of you on Sunday Oct. 4th as I do the walk in Boston. TAKE CARE! Fondly, Lisa Mooney

katie o. said...

So awesome, Kate! I am so happy for you. I hope I can join you in the johnny-burning ceremony. Maybe we can make Fuck Cancer tee shirts and prance around the fire!

Love Ya!!!!!

jal said...

Kate from one pyro to another that sounds awesome. If you need lighter fluid to start the johnny going just let me know. So glad you're almost there. Can't wait to celebrate with you!!!

PS - my confirmation word was "dogra". I think it is like karma but better. Used in a sentence - "You have the most amazing dogra of anyone I know and it has most certainly helped you beat this thing."

Love you.

KELLEY said...

Oh Kitty, finally an ending to your fresh hell. It just happens to be the 9th anniversary of Goy and SAC's wedding. I still remember the pink wrap you wore around your beautiful dress that we picked out in Nantucket for you to do a reading at our wedding. Scott and I cannot figure out what reading you did, but we remember the wrap showed back up at house this summer as a head scarf. And how beautiful it looked on your shoulders and on your head. So, we would love to take part in your Bonfire of fu!k cancer rags, but please STPW - Save the Pink Wrap!

We are celebrating tomorrow night for our anniversary, but more importantly for our KIT KAT. Lte me know if you want to share a glass with us!

Love you Large -
The house of Balls and KC AKA Goy.


Ps. tell Miss Julie that her former neighbors miss her and Emma walking by our house every night. I hope she is doing well.

Unknown said...

Awesome Awesome blog!! The year of magical thinking is almost over, my friend. To quote your friend Lisa "You ROCK Out Loud!" (I love that BTW). Buuurrrnnnnn the johnnie!! xoxo

Unknown said...

KJ -- you are the shit!! Congrats on your awesome progress!

Peace
Dillard

Stevieb said...

Burn motha Fucka BUUURN!!!!!!
Bring on NED

Lisa Daria said...

Awesome Kate, no go burn things -

BG said...

KJ - I'm so happy for you in reaching this HUGE milestone. Keep up the strong, positive attitude! Oh and thank you for incorporating this video into the blog. I'll never stop laughing at this clip.

Anonymous said...

HI Kate:

Burn it all!!! Would love to be there! And just as the smoke and ashes disappear into thin air - a shout of "TAKE THAT CANCER - FUCK YOU"!

You have endured some tough months, but you have prevailed! Glad this part is OVA for you!

Love you, Auntie J.

Give Kisses to the kids and Jamie too!

Dr. Nic said...

True to the end Kate ! If only the CAMELS could search on the term "positive thoughts"......!

you're amazing Kate !love you

LPD said...

Superb. Kate, you continue to amaze us with your wit and grace. Onward to reclaiming yourself, Lovey.

Burn the johnny! Burn the johnny!

PS...Fan-friggin-tastic video clip at the end. Almost weed m'knickers.