Friday, February 26, 2010

I am not a vegan

Hi all,

I think my other posting was confusing. I still eat meat and cheese, etc., just way less of it. And I eat tons more fresh organic fruits and veggies and whole grains, etc.

The most important thing you should know is: If you are nice enough to bring/send me any food, I will eat the hell out of whatever you bring-- with a smile on my face, no less. Even if it's a whole pig, cloven hooves and all, roasting on a spit.

(Not to give you any ideas).

Thursday, February 25, 2010

Big shout-out to my SUA peeps

I went to a small, private, Catholic girls' high school called St. Ursula Academy in Toledo, Ohio. GO SUA ARROWS! "WE ARE THE ARROWS AND THE ARROWS ARE GREAT!" (I always thought that cheer lacked a certain je ne sais quoi...) Anyway, I just realized that next Saturday (my 36th b-day), I'll have doubled my age since graduation, which was the last time I saw a number of my classmates.

AND YET... time and distance mean very little, apparently. (Quick! Someone write that down and send it to Hallmark before I barf on my keyboard.) I received two overflowing packages of letters from former SUA classmates, friends and teachers yesterday. I can't tell you how touched I was. As I opened each letter, I envisioned each girl, in her uniform, her 18-year-old self smiling at me. I remembered EVERYONE, even how they wore their hair, and if they were knee socks-girls or tights-wearers. I remembered inside jokes we might have had. I remembered classes we shared, trouble you may or may not have gotten into. Who you dated. Which group of girls you hung out with. What your parents looked like (if I ever saw them, like at Festa or something.) There's something significant about living through those 4 years with such a relatively small group of people. You get to know everyone really well and in a meaningful way.

Anyway, I wanted to write a blog posting specifically for you since it meant a lot to me that you wrote. And, I'm also grateful for other packages I've received from SUA girls, just out of the blue. (JDMOB, BAHC, MHH, JLD, JLMM, AFG, and I'm sure I'm forgetting someone and if so, I hate myself for listing initials in the first place-- I received it, and I loved it!! xoxo). And for your supportive Facebook messages and texts, thanks! You're hitting me from every media. And I can't believe how many of you are reading this blog! Awesome. And! And! And!

To reply to your collective comments:
Yes, it's crazy that this happened to me. I know. It makes no sense at all. It stinks that this is happening now, too, when I have two tiny kids, and when life seemed so perfect. I know this happens to people, but it happens to OTHER PEOPLE. I am not happy about it, in fact, I totally hate its guts. I didn't even really think about the fact that I had a colon before this whole debacle. For real, COLON CANCER? COME ON!! And seriously, if you just forget that I have this diagnosis, I am still really freaking healthy! Just with a few minor flaws. MINOR.

I have to say that I think midwesterners are just the nicest people. Ohio rules. (and I also have a strong love for Michiganers, in fact, I have at least 5 close girlfriends who grew up there.)

OK, you know when you start giving shout-outs to U.S. states that it's time to wrap it up.

In sum: Thanks for having my back on this one. I swear I'll do my best to obliterate it. You are helping!

Sunday, February 21, 2010

A snore of a posting

Just wanted to check in after this fourth round of chemo. (Warning: if you're looking for something interesting to read, it aint here. Keep searching!)

I think this one was a little more fatiguing for me than previous times. I took a 4 hour nap yesterday! (Four?) I also have been sleeping late in the mornings (thanks to having cousin Jen here visiting, and Neil home on the weekend) and I've been going to bed early. My fingers and toes have felt very sensitive to cold and prickly, and in general, I feel like I'm in a bit of a daze. Kind of like how you feel when you are jet lagged. Like there is glue in my brain.

It's one of those times where you just feel like sitting on the couch and watching nordic skiing coverage on TV.

I like to think that I am super-human, impervious to the effects of chemo. I was secretly hoping when they showed me my blood counts that mine would be off the charts, completely normal, like those of a 100% healthy adult. Of course, they were a little lower than that (of course they are, I'm doing chemo) but they were still considered good. And yet, I found myself feeling a little disappointed, wishing they would read them, throw down the charts, turn to me and say, "You're not going to BELIEVE THIS, but these blood counts are INCREDIBLE! Are you SURE you've had chemo?"

Alas. I am human after all. And I feel tired. I think our big morning outing to the zoo really did me in. So, much to the delight of John Q. Reader, I shall now sign off.

ps- My first big scan, to see what progress I've made thus far, is next Tuesday. Cross your fingers!!!

Friday, February 12, 2010

No use crying over spilt spelt

I've been reading this book about using nutrition to help fight cancer. (Argggh.. of COURSE I have-- I could probably benefit from alternating some of these more serious topics with a mindless People Magazine or In-Touch. But anyway.)

So, I'm starting to become fascinated with learning about the types of food you ingest and what they can do for your body--and what some foods can actually do to impede getting well again. I'm not saying that I GAVE MYSELF colon cancer (No, for that I blame my PARENTS) (TOTALLY KIDDING, MOM AND DAD!!! Seriously, that was a total joke. You guys rule. I love you. That was below the belt. Not funny), but I certainly could have been eating better all along.

And in fact, now that I'm doing chemo, which poisons the cancer but also kills a lot of good things in your body, it's really important for me to stay uber-healthy, so I can fight off nasty things, like new cancer. I can't let my immune system get too far behind the proverbial cancer 8-ball.

So just for today, I entered the world of BEING A VEGAN! Some of you may shake your head at my seemingly sudden or half-hearted change, but so far all day I've been eating fresh, raw, whole foods and drinking delicious organic juices I made in my juicer. I just had a beet/apple/kale/ginger/echinacea drink, and it made me feel all zingy!

I also took little Rhodes to the PCC (my neighborhood food co-op) and selected some preliminary items to start incorporating into my diet. I felt so weird looking at things like "spelt". (it's a grain.) I don't know how to cook spelt. But I know it's good for me. So I went over to the deli counter and found a pre-made tofu and spelt salad. I sampled it and it was DEE-freaking-LICIOUS. I bought a container of it. When I got home, Rhodes accidentally flung the container of spelt salad all over the floor. I was so sad. Alas--my days of ingesting spelt are far from finished. Stay tuned and I'll have a victorious spelt posting in the future, I assure you.

Anyway, I'm not saying I'm going to be a strict vegan from now on, but I'm definitely going to be paying attention to what I eat. Less red meat, less pork, less dairy... yadda yadda. Ok, I am even starting to annoy myself, so I'll end this one now.

Thursday, February 11, 2010

Status Check for All Y'all

I remember what I used to think when I'd hear a person had "gotten cancer". I have to admit, one of my first reactions was typically an immense sadness, as I suspected it was a possible death sentence. I expect a lot of you have had similar thoughts about me.

Now that I have a bit of an insider's point of view, I see it's really not a black-and-white thing. There's so many types of cancer, there are many approaches to treating it, and there are countless different types of cancer patients. Each one will respond differently, because everyone is different. Sounds pretty obvious, but what it amounts to is that, all things considered in my case, THIS IS NOT THE LAST YOU'RE GOING TO SEE OF OL' SHELLDOGG.

Just to update you on my situation ('cause I know it's gotta be awkward to ask), NO ONE has given me a number of "months/years to live". No one said mine is "incurable". My doctor is fully expecting I will respond well to chemo-- meaning, my treatments are expected to make this thing get better. If the chemo doesn't work, I have more options. They can do radiation. They can do surgery. I can do alternative therapies. God knows what else they/I can do. (remember, we're still new at this, too-- it's only been a few months since we even knew this was happening!)

I also have a lot going for me. (HA! That last sentence sounds like I'm running for class president. "I'm organized, I'm motivated, and I'm really going to TURN THIS SCHOOL AROUND!") But seriously, also in my favor: I'm young, I'm really healthy, and I am HIGHLY MOTIVATED to beat this thing. I'm focusing on staying really healthy, eating well (more on this in a separate post), exercising, and keeping a very positive, hopeful attitude.

My next steps are these:
About two weeks after my next chemo (which happens next Thursday), they are going to give me a scan to see what progress has been made on my two little stupid pathetic shit-for-brains cancer spots. I'll have had 4 chemo treatments by then, two of which will have including the drug Avastan. After we see the scan results, we'll have an idea of how I'm responding to these magnificent drugs (most kids my age take different magnificent drugs), and how long I'll be in chemo. It's possible the spots will have receded dramatically by then!

At that point, Neil and I will also probably be able to plan exactly when/where we're going to take our tropical vacation, because we're both a little bit ready for that.

And, as if things in my world couldn't get any better, I'm pleased to report that I also still have a thick, bushy head o' curls! It's gorgeous! Come visit and see!

p.s., I just noticed something HILARIOUSLY IRONIC: I used a "colon" as punctuation not once but THREE TIMES in this post.

Monday, February 8, 2010

A Chinese Trifecta

In the last fortnight or so, I've notice a a fair amount of "CHINA" in my life:

1- Compliments of a sweet friend whose initials are ECW, a Chinese feng shui master came to examine our house and to teach me about how it could be improved for optimal healing energy flow. (It's mainly good news, we just have a skylight issue in our family room.)

2- Per the advice of another friend, I am reading "The China Study", an incredibly thorough, enlightening, and sometimes scary study on nutrition. (read it and you will change how you eat-- all in the name of promoting long-term health and preventing disease).

3-Two weeks ago, we attended a lecture at Gilda's Club (named after Gilda Radnor. They call this "The club you never wanted to join") about the benefits of Chinese medicine during cancer treatment. It talked about acupuncture, chinese herbal medicine, tai chi, and loads more. We are just trying to gain a broader perspective on the many philosophies of care out there, and how they can support you during your chemo.

So much China, so little time.


Friday, February 5, 2010

F-U, plural

Chemo #3 has been fine. I started my Avastan drug. YEE-HAW.

I'm a little tired, and I'm feeling the side effect called "neuropathy", which is where your fingers feel incredibly sensitive to cold. Putting them in the fridge for a few moments results in the same feeling as submerging your hand in an icy bucket for 3 minutes on a dare. If you've ever tried that. The same is true of cold liquids-- everything needs to be room temperature or it's just intolerable. Neither of which is a big deal if you're a little careful.

I'll tell you what IS a big deal. You remember how I told you I have to wear an "infuser" of chemo medicine home with me for 48 hours after I leave my chemo appointment? (if not, read the first post on here, to get an idea of what chemo entails). This infuser comes in two forms: a plastic tube that you can tuck discretely in your pants or shirt, or a BLACK FANNY PACK with the medicine inside, beeping each time it dispenses a new drip. Naturally I demanded the tube infuser. But this time they sent me home with the FANNY PACK. Which I have to wear for 2 days! GEEES, as if this whole experience isn't already fun enough. I went to the PCC (grocery store) today to buy some beets and I tied my coat around my waist so no one would see it.

The COOL part about this is the name of the medicine inside. It's called flourouracil, but no one actually calls it that. The common name for it is "5 F-U". When they told me that, I was like, "For real? This chemo medicine is called 'FIVE F-U'?" Could that be any cooler, or any more aligned with how I feel about it all?

Not just one "F-U", but FIVE.

It almost sounds Chinese, in its simple, truthful beauty.

Wednesday, February 3, 2010

Litmus test in the chlorine

Yesterday I went for a swim. My second workout since going under the knife in December. It's important for me to stay active in order to get better.

Some people like to do yoga, others like to run. I like to swim. It's the only activity that truly feels second nature to me. (I started at 7 for Pete's sake, swam competitively through college, then for years after.) Running makes me crampy and achy and I last about 1 mile. Boag.

I felt amazing, completely energized, and really happy. My goal was to swim a mile. I hoped to work out for 45 minutes. (A note to you swimmers out there, you'll see that the two goals don't really jive. Yes, I had some time to kill after my 1,650). So I just started to make up ridiculous sets. Like "2X25s, easy, half backstroke, half underwater". I started bouncing up and down in the shallow end between "sets". I just felt like doing it and I couldn't stop. I caught the eyes of the women on the stairmasters up in the windows above, and I gave 'em all the thumbs up! They waved back. I felt like a 9-year-old at a slumber party who'd had too much Mountain Dew. I was acting like an age-grouper in practice when the coach steps off the deck to take a phone call and all the kids flip out and completely ignore the workout.

Actually, it was very much like how I occasionally behaved in lane 5 at Kenyon. Some of you probably remember. We kept a nice balance of "work" and "fun" in Lane 5. "The slow lane" to some, perhaps, but I thought of it more as a sort of 24/7 Aqua Fiesta. I entered Kenyon at the end of lane 5, graduated at the end of Lane 5, and we knew how to party. Plus, it was a great way to meet all the freshman.

So back in the pool, I got an idea. A serious idea. One that scared me a little. I thought, "If I feel so freaking good in the water, how could I have a stinking piece of cancer in my lung? Huh? Wouldn't a bad spot compromise my lung capacity?" I decided to conduct a short non-scientific test.

I challenged myself to do a simple "no-breather". (This is normally a piece of cake for a sprinter, swimming the length of the pool without breathing). And I considered just for a moment that less than two months ago my guts were literally splayed out on the OR table, and that it took weeks for me to be able to sit up without searing gut pain, and that I'm in the middle of chemo, and...OK, that I technically have "an issue" with my lower left lung.

So I started to get scared. If I couldn't make the no-breather, I'd feel like maybe the disease had more of a stronghold on me than I wished to admit. Suddenly, i didn't really want to do the challenge.

But then I remember a passage from a book I read. It talked about how, once you're told you have THE C-WORD, there's a tendency to step back a bit from life, to withdraw from people and commitments, to no longer establish long-term goals for yourself. But if you never challenge yourself or set goals, you're essentially slowly prepping yourself for your own demise. You're more or less admitting you don't expect to make it through to the other side. So you CAN'T DO THAT.

I thus had no choice, so I set off.

AND: Not only did I reach the end, sans l'oxygen, but I DID A FLIP TURN AND SWAM HALFWAY BACK, too. I wasn't even breathing hard! I stopped, satisfied, and chuckled to myself, recognizing that my competitive streak has hardly faded, I just haven't seen it in a while. It made me feel quietly confident and slightly proud, knowing with certainty I am going to be a serious adversary in this fight. I knew it all along, of course, but now I felt like I had some physical proof of my "strength".

Next week: bench press contests at the Pioneer Square pubs.

-Shelly "putting the HELL in SHELL" Baker Butler

Avastan Eve

Kind of like Christmas Eve. Except tomorrow, which happens to be my 3rd chemo day, I will be getting the drug Avastan in addition to my regular chemo drugs. I wasn't able to get it before now because my body was still healing from my surgery. This is the drug that, if I understand correctly, blocks the bloodflow to tumors. NICE. We are fired up. Sounds strange to say that, "I'M FIRED UP TO GET MY CHEMO TOMORROW!" But, each time I go in, I'm only getting healthier and healthier.

For the record, today was a great day.

Monday, February 1, 2010

p.s. Just so you know I am not a robot

I wrote the last post yesterday, in the middle of the day. I was feeling on top of the world. And I felt hopeful, as I generally am.

Just to be clear, there are certainly times where I am not feeling so happy and hopeful about all this. But in those times, I tend not to write. Instead, I tend to seek out someone to talk me through it, because in those times, being alone is the worst. Late last night was one of those times. Then my mom arrived from Ohio, and Neil came back from the airport, and things felt better again. I mention this, just so you know I am human. And I am sometimes scared. Terrified, actually.

Truth is, I would give ANYTHING, any-thing, for this to go away and for our old life to return. It was a GREAT life. I want it back, intact. SOON. I want to be here for my kids FOREVER.

But when those dark times hit, I just need to stop and remember that YES, there is reason to feel hopeful, and YES, people do make it through this, and yes, I even know some of them! And of all patients in my boat, I've got to have the deck stacked in my favor. Youth, attitude, health, support. My coping strategy is to just focus on now. I have so many unknowns ahead of me, it's pointless to wonder what the ultimate outcome will be because I simply CANNOT KNOW at this point. All I can control is today and tomorrow. So that's all I focus on. It's a strange way to live, but it's the hand I've been dealt these days. (I just used two references to cards in one paragraph. Nice. I suppose you COULD liken this experience to a trip to Vegas. Could hit the jackpot and return richer than you ever dreamed, could end up broke with an STD. Except, I don't expect I'll end up with an STD. Ok, so it's not a perfect analogy.)

A little bit of Pollyanna returning here-- living in the here and now does tend to make you try to make each day better, to treat each person you see with more love and to find more fun and excitement in the most mundane of events. But: this is supposed to be a dark post, so enough on that.

Anyway, I just thought it prudent to point out that I am not always ecstatic in the face of the C-word. That would not be normal.

Victory at Sea

I hit the pool for the first time in a while. Actually, there were a few snags. (1) my coupon to waive the $125 initiation fee expired YESTERDAY, and they wouldn't cut me any slack on that. I thought about telling them something like, "Aww, that really stinks because I have CANCER", you know, to really make them feel badly and change their minds. But I do have standards. (Still, at some point I may just throw out the 'C-card' to get my way, because if you got it, you might as well use it for SOMETHING positive.)

Then, once on deck, in my shiny new hot pink and black (gasp) Speedo, (2) I realized I forgot my cap and goggles. Whoopsiedaisy. Being intimately familiar with how pools run, I knew what to do. I sauntered over to the lifeguard and asked him if I could comb the lost-n-found for some loaners. He let me in the office by myself. I could have stolen anything: their staff schedules, the pool pH records, you name it. Anyway, all I could find was a rubber swim diaper and a crapola pair of goggles from 1987. But still: score. I would be able to see. So I went back out and asked him if I could borrow HIS cap. He doesn't wear a cap. Liar.

So (3), I pulled my hair back in a ponytail (awesome for lap swimming) and (4) strapped on the "Lane 4"-brand goggles. ("Lane 4", anyone?) They were ok, except they had no foam around the right eye, so that eye was completely filled with water from the moment I got in. I just swam with one eye open.

As I dove in, I realized (5) I forgot to remove the hygenic liner from my suit (all new women's suits have them). But it was too late, so I tried to ignore it and not wonder if any other women had tried on the suit before me. Let's just go ahead and make that (6).

But then it turned great. I started swimming and honestly, I felt amazing! My arms kept turning over and over, never getting tired. I felt like a wind-up toy, going and going, swimming circles around everyone. After a flip turn when I'd streamline off the wall, I could feel a slight tightness at my incision site, but that was all: it's healed! I would have started doing butterfly in celebration were it not for the still new-ish port installed in my shoulder. I'd hate to rip that thing out of the jugular just yet. Anyway, as I swam on and gazed out into the pool through my left eye, looking past the murky yellowness of my hair swirling all around my face, I thought, "YOU CALL THIS 'SICK'? HA! THIS IS NOT SICK! THIS THING DOES NOT HAVE ME! THIS IS NOT HOW A SICK PERSON FEELS!"

(OK--it got a little hokey, I guess, like an inspirational movie about a comeback kid you'd see on the Oxygen Channel). Still, let me have my moment.

And it's funny because in a way, that's how this whole process has felt for me. It seems like I cannot catch a break. One setback after the next-- and yet for some reason, sometimes I still am able to feel truly happy. (Don't let me mislead you, I've had some UBER-SHITTY TIMES, for s-u-r-e. To put it mildly.) But in general, I feel like they can throw all kinds of shit at me and I'm going to try my damndest to make the best out of this. Life gives me a shit sandwich, and I'll serve it with lemonade. To twist the expression slightly.