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."