Tuesday, March 30, 2010

I don't wanna party like it's 1499.

There's this game I always used to play. After I'd get over a particularly bad illness or infection, I'd ask myself, "If I lived back in medieval days, would that have killed me?"

(You can change up the game and substitute "wagon train days" or "the Victorian era", etc., to give yourself improved odds.)

Consider your own health history. Would you have made it this far? Not me.

The way I figure it, if I were living back in the days of King Louis XII, I'd for sure be a goner. I had a horrid "peri-tonsillar abscess" back in '97 that made my throat swell almost completely shut. It took surgery, IV penicillin, and several hospital visits to straighten that sucker out. So, that would have done me in--at the tender age of 23.

And actually, who's to say that, back then, I wouldn't have contracted some disease that my modern-day vaccinations have thus far prevented? No rubella, whooping cough, nor beriberi for me, thank you very much.

[Side note: Does anyone know ANYONE who has actually gotten the disease beriberi? It's my favorite disease name. Not to make light of it. I'm sure in reality it's no picnic.]

Back to the topic at hand:
Also, if I lived back in "the days of yore," I could have also contracted one of their plagues (Black death, or one of those other pandemic flus they had going around. You know, "back then.")

Or: I might have drunk some water from the same community well where the oxen had just relieved themselves (after gorging on a rancid carcass, probably.) Or I might have drunk some mead that had "turned". Or, died in childbirth (at the age of 15, for heaven's sake!) Who knows.

Them was some bad times.

I'm also glad I didn't get cancer anytime other than NOW. Even a few decades back, say in the 1970s, with my current situation, my future would have been pretty grim. Chemo is really advanced these days, and it works! This wasn't always the case. Medicine is truly making some incredible strides. (As far as I can tell. For the record, I did not attend med school.)

But then again, don't we always think, "THIS is the best time to get sick. Medicine is SO advanced now." ?? It's funny to think they were probably saying the same thing back in 1906. Right before they leeched you.

Friends, if you're going to follow my example and get cancer, please: WAIT A WHILE! Don't do it for another 20 years. Or more! Just think of the medicine they'll have by then. You'll be FINE. It'll be like getting rid of a bad staph infection. A little of WonderDrug X, and the cancer'll be history.

(FYI: Also in 20 years, we'll each have our own private droid, and we'll all drive around in spaceships.)

Tuesday, March 23, 2010

Nose Woes

Ok, this is a little gross.

If you are squeamish and not a fan of blood and gore or questionable blog content, please don't read this post. Just skip it, and check back in a few days.

If you're still reading, consider yourself warned, this isn't really dinner table-stuff.

So, the tumor-starving drug, Avastan, features some neat side effects. One of my faves is bloody noses! Avastan sort of perpetually eats away at the lining of your nose. Now, each morning when I wake up, I feel a strong urge to blow my nose. When I do, it's a blood and gore-fest. Not blood from inside my body, but from the lining of my nose. Occasionally, and with increasing frequency, it'll be the middle of the day and suddenly it feels like my nose is running. I'll get a tissue and find myself shocked to see bright day-glo RED. Out of the blue.

Awesome. Creepy. All in a day's work, with Avastan. (TM!)

I'm starting to get a little paranoid now, and I constantly find myself checking my nose for fear that I am unwittingly dripping red stuff down my face. I worry I'll be in the checkout line at the grocery store and start dripping blood on the conveyor belt. "Cleanup, Check Stand #2." Or I'll be chatting with a new friend, and my nose will start bleeding while they shift awkwardly, trying to figure out how to alert me without embarrassing me.

My doc checks the lining of my nose at each appointment, because apparently, if this gets out of control, it can eat a hole through my nose, at which point, I must discontinue Avastan. But my thoughts are, if Avastan will kill cancer, IT CAN TAKE MY NOSE! I can get a new one. Michael Jackson did, right?

Sunday, March 21, 2010

Team Shelly on the run!

This morning, a group of my friends gathered together to race in the Mercer Island half marathon for TEAM SHELLY!

http://www.mercerislandhalf.com/

It's a race to help raise money for colon cancer awareness. (I am a still bit bewildered that I am now linked with the COLON of all organs... How sophisticated! How typical of me!)

They wore their team Shelly regalia (bracelets, blue shirts, etc.)

I had grand plans to meet them at the finish, but since I just finished up my chemo, I slept in LATE....zzzzz... I am sure they forgive me. And I hope they know how much I love them all for doing this! I will see to it that photos are posted on my Team Shelly Facebook page for you all to see my studly buds racin' their little hearts out for me. LOVE YOU GUYS!! XOXO

Wednesday, March 17, 2010

Identity Theft

Since my late Nov/early Dec diagnosis, I've met a few new people. It's so strange to have a person enter your life for the very first time when you are going through something like this because, in their eyes, it instantly becomes your defining characteristic.

I can't really blame them. Let's say I met someone tomorrow, and she told me, "Hi, I'm Tina. That's short for Christina. I grew up in Connecticut. I have 2 sons, Lester and Lyle. I am a lawyer. I study Buddhism. I have cancer. We live in West Seattle. Next weekend, we're going to Hawaii." The ONE THING I would take away about my encounter with Tina is, "HOLY COW, SHE HAS cancer. WOAH. THAT S-U-C-K-S."

It's especially jarring because most people our age don't have cancer. I don't think my generation can handle this very well. We aren't ready for this stuff to start happening yet. It feels like we're just getting STARTED with life.

So, of course, this is the impression the new people get of me: The nice, young girl who, shockingly enough, has cancer! But sheesh, it's such a misrepresentation, because this disease is SO NOT who I am. For goodness sakes, I've been alive now for 36 years, but I've only known about the cancer for a few months! I didn't do anything to earn it. I don't like it. There are lots of other parts to me that are easily three times as interesting. But it's hard to get past that detail.

It's odd, because I think if the disease I had gotten was high blood pressure (also a killer, albeit "the silent one"), no one would ever whisper, "That's Shelly. She has HIGH BLOOD PRESSURE."

On Monday, during Betty's dance class, I introduced myself to one of the moms. She was really sweet, and she had just moved to Seattle. Plus, she has 3 kids, around the ages of mine. I thought, "She just moved here! She could use a friend!" So I really started chatting with her.

There is always a pivotal moment in these conversations with new friends where you have to decide if you are going to drop the c-bomb on them, or let them remain blissfully aware about the beast that lurks within you. Sometimes, you can't avoid it, and once you tell them, the conversation gets SO serious and grim. Really puts folks off-balance. Kind of kills the mood.

Our convo went like this:

Her: "So, ok, you have... two kids?"
Me: "Yep. Just two."
Her: "Ever consider adding a third?"
Me, laughing a bit and shaking my head: "Actually, yes. In fact, turns out we were going to try to get pregnant in January. But. We...didn't yet. So."
Her: "You just decided not to try anymore?"

--so I've lead her to the pivotal point, where I have to decide if I tell her, or if I lie and make up some convoluted excuse, which will probably catch up with me later, anyway---

Me: "But.... well, I got sick. Yeah. See, um, turns out I have cancer. So, YEAH, YEAH, no, IT'S OK. I know, really weird. I know."
Her: "Oh my God. WOW. I NEVER would have guessed it in a million years. You seem so healthy! You have all your hair! I am SO SORRY. Ok, you know what? I am going to pray for you. Tell me again: what's your name?"

So she knows I have cancer before she knows my name.

I desperately need a new come-on line.

Monday, March 15, 2010

Genetic Counseling

I went to a genetic counselor two weeks back. It's in my best interest to learn if this cancer is the result of a genetic mutation. They say that 30% of colon cancer IS. (which means that 70% isn't.) (I just did that calculation in my head, easy.)

The points of knowing are these:
1- If i have a genetic mutation, it could mean I am also in the crosshairs for other types of cancers. So I'd need to be screened extremely proactively for those. Like every year, or more often.
2- If I have a genetic mutation, it could mean my sis and bro, my kids!, heck, even my parents, could be in trouble, too. So they need to know.

The doctor said it was possible I might have a mutation called "Lynch Syndrome", which effectively means that there is a protein missing in me that is designed to get rid of bad cells before they multiply. It would also mean I was at a hugely increased risk for ovarian, uterine and bladder cancer. SIGN ME UP.

To test for it, they first took my tumor out of cold storage. Yes, they keep tumors in the deep freezer! Just for situations like these. I would like to get my hands on it so I could beat the snot out of that stinking clump of cells. (Can't you see me, holding the tumor away from me after I'd punched it left and right, finally throwing it back down on the lab table, sputtering "YOU'RE NOT WORTH IT.") Anyway, they did some preliminary screening work on the tumor prior to doing the full blood work-up, because the test for Lynch costs $3000!!! So if they could rule out Lynch, they could save me the $$ for the test. (and someday, Betty can have braces after all!)

Anyway, I got the results today. I do NOT have Lynch syndrome. So that's good. I could have some other mutation, but they highly doubt I have anything that they are able to screen for.

So I guess that means I can't blame ma or pa for this. It was my own damn colon's fault.

Saturday, March 13, 2010

The X-factor

I am getting better. I feel TERRIFIC.

I wonder why I am so lucky to be one of the people who is getting better. Not to count my chickens before they've hatched, but I've got a really good feeling about things.

I have been considering the myriad factors that may be contributing to my cancer dying. I wonder if I did something special, something out-of-the-ordinary, that contributed to this. Here are the things I have done, or that others have done for me, both tangible and intangible, that may be contributing to my getting better.

1. chemotherapy
2. good doctors
3. exercise (swimming 3x/week for 45 minutes. usually around 2600 yards.)
4. Loads of help (babysitting, food delivery, people giving my kids rides, etc.)
5. a strong partner in my husband
6. a super-supportive and strong family
7. amazing friends and community
8. Lots of people praying for me
9. Visualization techniques, wherein I imagine my immune system destroying the cancer
10. Drinking freshly made organic fruit and veggie juice every day
11. Eating way, way healthier. (more fresh fruits and veggies, whole grains, less dairy and red meat, etc...)
12. Vitamin D supplements (supposed to help w/colon cancer)
13. Agaricus Blazei and Turkey Tail Mushroom supplements (both recommended to me for their purported anti-cancer characteristics)
14. Keeping a positive mental attitude, feeling like I am going to beat this thing
15. cranial sacral therapy
16. I visited a healer (check it: http://www.celllevelhealing.com/)
17. Getting regular cards and well-wishes from friends, to keep my spirits up on a daily basis
18. Having my kids here to remind me every minute of every day that I simply cannot die. Not an option.
19. Youth
20. Good luck tokens given to me by others
21. Reading up on the disease. Knowledge is power.
22. The undefinable magic of SHELLY POWER

I am sure there are others. Those are just off the top o' my head. I guess I'll never know exactly what all is contributing directly to me getting better. It's like a multiple choice question where they could say,
a) 1
b) 2 and 5
c) 7, 14, 18
d) all of the above
e) none of the above

But the answer is:
F) YOU'LL NEVER KNOW.

Friday, March 12, 2010

Frankenstein

Thursday I got a massage. The masseuse asked me if I had any "issues" she should know about. I guess she meant, "Do you have any areas that need special care?" or "Has anything happened to your body lately that I should know about before i start manipulating it?" I figured, "She's going to see my hacked-up flesh soon enough, so I may as well do some 'splaining."

So I said, "Well, there IS this", and I pulled up my shirt and showed her my 9-inch burgundy-colored scar that snakes down my tummy, with staple marks still dotting its sides. (How goth!) Her eyes widened. I explained, "I just had some surgery in December. Which is why I also have this", then I pulled down the upper right shoulder of my shirt so she could see the smooth, SweetTart-shaped bump under my skin where my 'port' is located. (The port is where they can stick a needle to hook up the chemo in an effort to save my arm veins.) (One final word on the port: The port is the creepiest thing I've got, it looks otherworldly, like aliens implanted something in my shoulder. At least my abdominal scar looks somewhat biological and organic. A port is clearly NOT a natural growth. It definitely causes people to stare. I look ahead fondly to the day it will be taken out.) And: just in case folks miss it, I also have a gash where they implanted that beady little sucker. Nastola.

Then I remembered something else. "Oh, also, watch out for this", I said, showing her the puffy white bandage just under my ribs where my dermatologist removed a mole on Tuesday. "And also, there's this," and I turned around and showed her another bandaged former mole, on my back. Then I said, "But that's all."

Since she asked.

On a slightly different note, later, as I was walking out of the spa, a woman came in the front door. She was clearly undergoing chemo (I can tell who "my people" are now), as she was bald but wearing a hat with a warm liner under it, had no eyebrows/lashes, etc., and she had that certain pallor.

I wanted to go hug her and give her a high five-- I have this response whenever I see a person whom is clearly a cancer patient, I just feel this instant kinship and complete compassion and love for them-- but she transmitted a hands-off vibe. She just seemed extremely wounded and downtrodden, and when she walked up to her masseuse and hugged her, she greeted her with, "Well... I'm not dead yet."

I looked at her and said, "'NOT DEAD YET'? Aww...Come on!"

Then I realized I was overstepping my bounds. Sure, I was disappointed with her for sounding so defeatist, but then--what do I know about what she's going through? She can deal with this however she needs to. So I paused awkwardly then just walked out.

Thing is, she probably thought, "What do YOU know about my problems? You are a beacon of health and youth. BEGONE WITH YOUR SUNNY ATTITUDE, BLONDIE." I realize I do not look like a stage 4 cancer patient. And I SURE AS HELL DON'T FEEL LIKE ONE. In fact, I think this was the last time I'll ever refer to myself by stage number again, because it just sounds too grim. (For the record, I feel like I'm stage .25, if such a thing existed.) Plus, I have a full head o' hair, lots of energy these days, and, in case you missed it, two very small tumors that are over 50% gone?

It all just reinforced the idea that you NEVER know what people are going through. That A-Hole at work just might have a tumor festering in his gut. The dipshit who just cut you off may have lost his dad this morning. Or he may be racing to the hospital to see if his son is okay. You never know what rough hands people may have been dealt. So be grateful for what you have, and be nice to everyone, just in case.

Ok, ok.

Maybe I should have titled this post, "Frankenstein learns a lesson." (Then I could write a series about myself. "Frankenstein goes for a swim". "Frankenstein visits the bank". "Frankenstein makes jambalaya".)

And seriously, if this all sounds a little saccharine for you, I can see why you'd think so. Fair enough. But based on my recent experiences, this is truly how I feel these days.

Thursday, March 4, 2010

Bi-weekly torpor

Chemo is weird.

You go in for it, essentially prepping yourself for a several-day-long illness, kind of like a fortnightly flu. You don't particularly look forward to it, but you know you need to endure it, and you know it'll pass.

Thursday, I arrived at the doc's office fired up and ready for action! Talking a mile a minute, whooping and bragging over my continuing weight gain (144.5!!!), asking the nurse questions ("What does this drug name mean?" "Will I ever like the taste of alcohol again?", "Are some of the chemo patients you see really angry?", etc.)

Then I sat down and started to get the chemo. It goes just fine. But by nighttime, you feel a little bit like a robot powering down. I envision that silver droid from "Lost in Space" as his arms and head slowly lower and there's that futuristic de-powering "Vrooooooooooom" sound.

So, you just need to get lots of extra help and spend a lot of time laying low. You aren't in pain (hopefully), just tired, and you have a few annoying side effects. For me, most annoying is the "neuropathy" (the incessant slightly uncomforable tingling in my fingers and toes if i touch anything even REMOTELY cold). Sometimes, my hands even freeze up into these grotesque formations, where my fingers jut out and bend at odd angles, and they freeze that way, and I can't move them. It looks like I'm trying to pretend I have "zombie hands", except they are real. When I warm them up, they go back to normal. Otherwise, I can beat them against each other and they just whack together like two wooden blocks. Like petrified wood, from the crypt. Cuh-reep-y.

"Anyhoo!", you always snap out of your sluggishness after a few days, and soon enough you feel peppy and glad again. Then the cycle repeats. As I said, odd.

I'm happy to hang out here and recover. Main thing: I'm a-ok with all this, because it's working.

p.s.- I had two different endings written to this blog entry, but my mom, whom happens to be sitting next to me, forced me to change them. They were funny. But the humor was too dark. So. Let's end on an UP NOTE!! xoxoxo

Tuesday, March 2, 2010

Scan #1 Results are in!

Um.

HOLY FREAKING MOLEY!

Good news, friends. My oncologist called my house late tonight (rather than making me wait 'til Thurs a.m.) to let me know that the scan results were very good. In just 4 chemo sessions (and only 2 of those included the tumor-slaughtering drug, Avastan), my tumors have already SHRUNK OVER 50%!! In just four sessions!

Put another way: The two tumors didn't stay the same size, nor did they just shrink ever-so-slightly, nor, God forbid, did they grow. They are more than halfway gone. Not to brag.

Truly, my doctor tends not to overreact or over-promise, but he very enthusiastically called this progress, "Terrific!"

I freaked out and started jumping up and down really, really high, and I couldn't stop. I am sure my doc could hear the odd grunting noise from my efforts, though he didn't say anything. Then, mid-jump, I told him that I loved him.

Then I called my parents, in-laws, brother, and sister. Then I had to put the kids to bed. Then Neil and I sat on our front porch swing and stared at the lake, and I listened to the wind blowing through the trees (my favorite sound) and the rain as it pitter-pattered on our roof. (Good Lord. The writing. This is an English major on drugs. Any questions?) And for a few minutes, I squinted my eyes a little and pretended I was at Tupper Lake, and it made me even happier. And I just kept on thinking, "GOD, I love being alive."

Not out of the woods, of course, but getting closer and feeling more hope than ever.

Thanks so much for all the thoughts, prayers, and general Shelly Power. It's been helping me get better. And now we have proof of that.

Ode to my colon

Oh colon of mine
Things were going just fine
Then you got all diseased
Leaving me none too pleased.

Oh sweet, magnificent colon
You twisty, bendy guy
You never asked for much from me,
Just smiled as food passed by.

You "team player", you, dear colon
Ever taking the backseat
The heart, brain and lungs are much sexier
Who thinks a colon's neat?

But clever, naughty colon
THIS TIME I noticed you
You grew yourself a bad wad o' cells.
What a crappy thing to do. (pun)

Oh dramatic primadonna
You cunning ingenue
Now YOU'RE the center of attention
You planned all this, DIDN'T YOU?

You made your point, oh colon,
Now everyone knows your name
Mr. and Mrs. Powell even named their son after you
But I've had enough of this game.

Yet talented, resilient colon,
They nipped 8 inches from your length
And you healed up fine in 6-8 weeks
Saying "No big whoop!" WHAT STRENGTH.

Oh proud and useful colon,
I'm not mad at you
But if you ever do this to me again,
I'll hack 3 more FEET out of you.

Colon 2.0
Now you're free from any nasties
You work just fine, digestion's divine,
I pray for NO MORE colo-disasties.

Monday, March 1, 2010

Testing, one two...

Tuesday (tomorrow) will be a day filled with 2 non-fun but important tests. I'm viewing it a bit like a 17-year old feels about their upcoming SATs. Although in my case it's more like: Shitty Ass Tuesday.

Seriously Annoying Times

Shelly Always Triumphs

I could come up with a bunch more, but it's late, so I'll just tell you what tests I have.

At 9:45, I will be getting a CT scan to see what progress I've made thus far. I've only had 4 chemos, two of which included the Avastan drug, so I'm not EXPECTING to be completely cancer-free. Just kinda hoping. I'll learn the results on Thursday.

Sometimes I can really imagine them telling me, "Well, whaddya know, IT'S GONE! JUST LIKE THAT! Get outta here, kid! Go play basketball or catch a movie--you're all done here. " Other times, I can see him saying, "Well...I'm sorry to break this to you, but it's now spread to your brain and guts." I don't think that will be the case, but it SURE IS FUN TO THINK ABOUT! I think, based on the results of this, the doc will have a better idea of how long I'll be in chemo. Right now, I have no idea. That's difficult.

THEN!:
At 1:15 I get to meet with a genetic counselor to give blood so they can test me to see what other nasty things I might be genetically predisposed to getting. This won't be a hard test, just kind of... well just overall not a fun topic.

I'm not really nervous, but it is strange. So far in this process, things have been so nebulous. Nothing is black and white. Nothing is certain. I have no idea what next month will bring. So this test is a change, because it will yield some very definitive results, just when I'm starting to get used to living with uncertainty.

Anyway, that's my day. I may try to jump in the pool in between the two tests, because why the hell not. My parents arrive on Wednesday. Chemo Thursday. Saturday's my birthday. 3-6. Quelle week, n'est-ce pas?

Good night, everyone.