Saturday, December 22, 2012

Sigh

Well, the PET results weren't so great. I have three active "tumor" sites, all small, none new, but nonetheless, they're there. Yep.

So, there's one tiny spot in my lower left lung, one tiny spot in the liver duct, and a little patch of "chest nodes" next to my lung, which have grown slightly since the last scan. All of this means that my current chemo regimen isn't working anymore, and I have to switch to a new type of chemo, stat. I will start right after I return from Ohio in the first week of January. I was hoping for a bit more of a break than 3 weeks, but I also don't want to lose any ground.

So far I've done a total of 24 months of chemo. Isn't that INSANE? Imagine that: two years. Shouldn't I at least win a Purple Heart, or receive diplomatic immunity, or something? COME ON. I'm really proud of my little body for holding it together so well. Sure, there's been some collateral damage (my abdomen looks like a shark bit me, my hair's getting weird, I'm too skinny [no, it's not as cool as you'd think], my nose bleeds every day, I can't really feel my feet anymore, I'm constantly cold, I lack my normal energy levels, etc.) But I can't complain. Many people tell me they'd never know I was on chemo at all. (Now I sound like I'm bragging. No one wants to read a braggart's blog. Even if the writer has mutant colon cells growing in far-off organs.) All of this is really just a way of saying that I know I can handle more challenges.

I'm determined as ever to shrink this cancer. My body feels strong. (As I keep mentioning.) My resolve is intact. Sure, I'm frustrated (as hell), baffled at this latest turn, scared at times, terrified at others. But, and maybe it's just the holiday season, the bulk of my time has been spent filled with gratitude and good cheer about the many thing that ARE going right in my life. My kids, alone-- I love being alive.

AND THAT'S WHY I'M FUCKING DETERMINED.

Tomorrow, we head back to Ohio for Christmas. I cannot wait to go. We're going to have a terrific time. I'll deal with this shinola when we return. Onward ho.

Thursday, December 20, 2012

PET scan tomorrow

Wow, that was fast. I have a PET and CT scan scheduled for tomorrow, Friday the 21st. It's funny how nebulous test results can rocket you to the front of the line in the scan department. ("Funny" of the non-hilarious sort.)

If my insurance hadn't been so stringent about denying me a PET scan for so long, they would have actually SAVED themselves money in the long run. Because now I'm repeating a CT scan that I just took three days ago. And if we learn something new, the expensive treatment I've been getting might not have happened. But that's another story.

Hopefully I'll receive my PET results tomorrow night. Then I can go into the holidays knowing what's really happening. As Neil said, "We can handle anything, so long as we know what we're dealing with."

Also, I am feeling happy and festive today, in spite of it all, for some reason. We had 7 kids over today and 3 moms. We decorated cookies and played. The house is full of Christmas cheer. We're doing all right.

Wednesday, December 19, 2012

CT scan results

ARGHH.

I have to get a PET scan as soon as I return from Christmas break. The CT showed spots, but Dr. K can't tell if they are alive or dead. Or inflamed from my recent surgery. Here's a snippet from an email I sent earlier, since I don't feel like rewriting it. It's choppy, but you'll get the general idea:

"(The CT scan showed) that little tumor area on the liver bile duct. (This is the one that they found during my surgery, the one where he shaved off as much as he could. I think I have a few milimeters left in there.) That's not to say it's bigger or anything, just that it's there. They've seen it in the past. He thinks it could be inflamed from the surgery.

The lung spot I have had shows no real change. He can't tell if it's dead or alive. It's very small. PET needed here to show what's going on. 

Then, i have a few nodes next to my lung-- he calls them chest nodes. Those were there before, but he says they appear "inflamed". Which is to say, I suppose, maybe a little bigger. But he is wondering if they are inflamed from the surgery i recently had. I asked him if that was truly a possibility and he said it was." 
So. I have to get a PET scan to gain conclusive insight about all these spots. In theory, all could be well. Also, in theory, the cancer could be stable. Also, it could be growing ever-so-slightly. Good, not as good, or not good.

It looks like I'll probably have to start chemo again in Jan. If the spots are indeed growing, I'll need to switch to a different chemo, because this one (FOLFOX) is no longer working. (Aww! After 9 months of it + 15 more months of it? At this point, it's like an old friend.)

And how am I doing with all this? You know, if it were just ME I had to worry about, I'd be ok. I'd just roll up my sleeves, cuss at the sky and grit my teeth, ready to do more exhausting, all-consuming, sick-making, inhumane work. All of this, with Neil by my side, my unflaggingly devoted spouse. BUT THE KIDS... the kids. Add them into the mix and I can't help but feel this dagger in my soul. They are so sweet, innocent, lovely, needy, YOUNG, and wonderful. They need their mama desperately, and maddeningly, for all the things I've accomplished in my life, I cannot provide the simple yet vital guarantee that mama is always going to be here. It makes me feel desperate, extremely frustrated, terrified, and sad beyond words. 

But. When I get to that point, I calmly remind myself that I am not going to die within the next year at LEAST, and for now, that's going to have to be enough. Then I can exhale a bit, and resume the status quo, more or less.

Truth is, the scan might not be bad at all. Or not all bad, at least. At this point, I may as well just try to forget about forecasting the future because, oh yeah, I can't.

Instead, what I need to do is take that news and go have myself a Merry Christmas and a Happy New Year. 

Thursday, December 13, 2012

Upswing

I only have a few minutes to write. I'm at my LAST CHEMO (til further notice... let's not get our collective hopes up... it's no fun getting hopes dashed, I've learned... but at the same time, it's not good to lose hope... what a fine line to ride). Anyway, soon they will be loading medicines into my veins that will render me silly and sleepy and I won't be able to complete a sentence anymore-- so here goes.

I have been feeling absolutely awesomely lately. I am not sure what is going on, but I have lots of energy, I'm feeling bright and festive, and I've been filling our days with fun. Decorating cookies. Parties. Visiting Santa. Doing crafts. My house is even clean. My laundry is up-to-date. My car is vaccummed, for heaven's sake. (vaccum is one of the words I never spell correctly. Vaccum? Vacuum? Look at it. What a weird word. What language gave us that word, I wonder.)

I have been seeing my accupuncturist regularly, and she helps me out. Not just with the needle/energy thing, but with mental strategies for navigating this shitfest. It's truly helpful and inspirational.

I also saw a specialized healer. I'm not sure what you call her. An intuitive energy healer? Half of you are thinking, "woo-woo, Shelly. Rainbows and auras." But, it was a very interesting experience, one I can't really explain right now. I owe the experience to my friend, Francesca, who learned about this woman and who got me in and also somehow financed the situation for me. This woman, Marie, apparently hosts a weekly radio show and has a huge wait list for personal appointments. HOWEVER, if there are cancellations in her schedule, she opens them up to people with the "greatest need". Stage 4 cancer really has a way of putting you at the top of everyone's list. Akin to ducking the velvet ropes at the hottest NYC nightclubs. Me and P-Diddy. Courvoisier and private tables. Back to the healer--I guess if I had to sum up a takeaway from all this, it's the valuable lesson that I have so many tools for healing right in my own body. I could stand to be a bit more intentional about my approach to this. (And that applies even to you, in your healthy state. Your mind is an incredibly powerful tool, and you probably aren't harnessing even a 1/4 of it. Few people really do.) Ok, that sounds preachy and new-agey, and you are wondering if I have gone off the deep end.

I'm just saying, I am excited. I feel sort of in control. That's a remarkable thing, when you have cancer. It's empowering when you don't feel like you're throwing a life buoy out to your oncologist, and you're bobbing along in the tide, head down, hoping and praying he'll navigate you to calmer waters. It's amazing when you realize, "Hey. I can kick. I can pull. I'm actually a pretty good swimmer myself. I am an important part of this healing process."

woooooh. The meds are hitting my brain, I need to sign off. Thanks for listening. See you on the other side.

Wednesday, November 21, 2012

Gobble

Hi, everyone. A little update for you on this Thanksgiving eve.

First off, I am thankful for YOU. Even if you are someone I don't really know who just reads this blog for kicks. (And I mean, come on, the subject of this blog has historically been something people get a real kick out of.) Anyway, thanks for your support.

2. When they opened me up for gall bladder surgery, they did find a little surprise spot which turned out to be cancer. A few millimeters big. It's an old spot on my bile duct that we thought was dead. It hasn't been showing up on the scans, not even the PET scan. PETs, it seems, are an imperfect technology. They removed what they could of it, but, considering its tricky location, they had to leave some of it in there. Damn.

Anyway, to look at the bright side of it:
-Now at least we know it's there. And we know that our work is not done. I'm not clear. I'll still be taking a break from chemo for a little while after two more cycles (mid-December), but we will need to address things again in the new year.
-The surgeon looked around in there and didn't see any other spots, so it's not like I'm teeming with undiagnosed tumors.

3. I don't recommend doing a round of chemo right after an open surgery. Tell a friend.

4. My parents are in town for the holiday. We'll feast with my sister's family and some friends. I AM thankful. Just a little miffed about the curveballs life keeps tossing my way.

Monday, November 5, 2012

Sliced. Diced.

The gall bladder is history.

Friday, I went in for routine arthroscopic surgery. There was an adhesion (complication!), so they had to cut me open old-fashion style. OW. Instead of a few teeny bandaids, I have four gauzy gashes, surrounded by great swirls of purple and red bruising. All of which will look nicely, combined with my giant colon scar. And all this just two days AFTER Halloween, as misfortune would have it.

I'm home now, and I can barely walk. Wasn't expecting this little curve ball. Kind of was thinking I'd be able to spend the week doing things like sitting up all by myself, and walking from here to the kitchen in less than 10 minutes, without groaning all the way.

Good ol' abdominal wounds. I think I now know how it feels to be shot. If I used words like "bucket list", I could comment here about that.

Spirit-wise, I'm ok. This too shall pass. However, I did un-friend two people on Facebook today, for the crime of chronically using their status line to complain about how rough their lives are. So maybe I'm feeling un peu feisty after all.

Thursday, October 18, 2012

Light at the end of the tunnel

Newsflash. Today my doc told me we would do two more months of chemo, then stop. THANK YOU SWEET BABY JESUS.

My last CT scan showed a very small lung node spot, but CT scans can't tell you if those spots are cancer or just scar tissue. Insurance has repeatedly denied me a PET scan, which WOULD show if it's cancer or just scar tissue. So I'm continuing on with chemo. By December, if the spot isn't gone, we need to try a different approach, anyway.

And not that I'm counting or anything, but that will make a total of FIFTEEN DAMNED MONTHS OF CHEMO. Imagine that for a moment, if you will. Where were you 15 months ago? What have you done since then? Me? Oh, just FIFTEEN DAMNED MONTHS OF CHEMO, that's all. And lest the cursing misleads you, know that I'm actually quite happy right now. Because I have an end date, at last.

F.D.M.O.C.

Loud and proud.



And insane.

Wednesday, October 3, 2012

Desiderata

Just love this so. Absorb its wisdom for your fine self, you child of the universe.



Desiderata
Go placidly amid the noise and haste, and remember what peace there may be in silence.
As far as possible, without surrender, be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even to the dull and the ignorant, they too have their story. Avoid loud and aggressive persons, they are vexations to the spirit.
If you compare yourself with others, you may become vain and bitter; for always there will be greater and lesser persons than yourself. Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals, and everywhere life is full of heroism. Be yourself. Especially, do not feign affection. Neither be cynical about love, for in the face of all aridity and disenchantment it is perennial as the grass.
Take kindly to the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive Him to be, and whatever your labors and aspirations, in the noisy confusion of life, keep peace in your soul.
With all its sham, drudgery and broken dreams, it is still a beautiful world.
Be cheerful. Strive to be happy.
Max Ehrmann c.1920

Sunday, September 9, 2012

That takes a lot of gall...

Lord have mercy. IT WAS NOT AN ULCER. I just returned from a long weekend at the hospital, because I have somehow developed GALL STONES. I need to get my gall bladder removed.

Are you kidding me?

This isn't even related to cancer, just a neat coincidence! Just a chance for me to spend more QT at the hospital. Say hi to some old friends. Check out the updated cafe menu.

The pain I have been feeling for the last few weeks was a large gall stone making its sluggish, clumsy, jagged attempt at exiting my body. The GI doc said my bile duct looked like a freight train ran through it. I'm pretty seasoned and stoic when it comes to pain, but this experience was up there among the most challenging. And, I'm a lovely, jaundiced shade of yellow as a result.

Normally, a person with this condition would be forced to part ways with the offending gall bladder immediately. But I have "special circumstances" (not my words). I have to wait SIX weeks, until the chemo drug Avastan is no longer in my system. (Avastan makes you prone to bleeding. If you're a bleeder = No chance at surgery).

So in my 12th consecutive month of chemo, I now look ahead to gall bladder surgery. I say, if you're going to get medical procedures, go big or go home. Pile 'em on, high and deep. And who knows what next month will bring. Appendicitis? Root canal? Giardia? Tapeworm? Dengue fever?

I may just get rhinoplasty for the hell of it. I think we just might have hit our insurance maximum by now, anyway.

Friday, September 7, 2012

Oww

For the past several weeks, I've been having these stomach pains, on and off. The type that will land me flat on my back for 5 hours. Burning, intense, relentless. Where you can't get comfortable, no matter how you move. Oxycodone doesn't even help a bit. Then, the pains finally go away, and the next day I feel fine. What? So, Neil and I are putting me in the hospital today to figure out what's going on. I am pretty sure I have an ulcer. I have all the signs.

My mom moved up her Seattle visit two days and is flying in today-- she changed it at a moment's notice, aren't mothers great like that?-- and she'll be here for almost two weeks. The guest room is still a wall of boxes. Alas.

My doc says until we get this figured out, we will hold off on chemo. YES! (But at the same time, no! I need that, don't I?) I am also supposed to be getting a scan any day now (insurance...ptth) to see if the cancer is in fact gone.

I'll trade the cancer for a bleeding ulcer, anyway.

Off to my son's preschool orientation, then, the hospital! I'll let you know what it turned out to be when I get back.

Friday, August 31, 2012

The choice is yours

As I was getting ready to go to chemo yesterday, I came upon this quote:

"Write it on your heart that every day is the best day in the year."
-Emerson

I thought, "Wow, I love that sentiment. The idea that each day is a chance to start everything over, and that we have the power to decide if it's going to be a typical, ho-hum day, or if we will choose to elevate it into an extraordinary day. And by "extraordinary", it doesn't have to be flashy, it could be a day of restful, simple, pure happiness."

Then I thought about the fact that I was leaving for chemo in 10 minutes. "But how can I truly apply it to today, of all days? I'm headed to the slaughterhouse. To chemo. Come on. Best day of the year? Bit of a stretch there."

But then I thought about it more. "Sure, it's a suckass day. In some ways. But think about life outside the hospital doors. I have a new, beautiful home. My daughter is in an excellent school. I have a happy, wonderful marriage. I have loads of family and friends to help us with childcare and other things. All my bases are covered. The weather is sunny. And ok, YES, I will be in chemo, true. But, I'm pretty lucky I have access to this amazing doctor and to these medicines that are ultimately making me get better." It's kind of my choice to view chemo and this day as a burden or as an opportunity.

So I headed off to to chemo not with the usual grey-cloud feeling, but instead with this feeling of sun poking through the clouds. There were still clouds. But also the sense of possibility.

And I don't know if it was my improved attitude, or the acupuncture, or both, but today (Friday), as I lie in bed with my chemo infuser pumping poison into me, I don't feel as sick as usual, and I've even been eating today. No barfing at all yet.

Who knows what it is, precisely, that makes a person better? I do know this:  Your state-of-mind and your attitude are hugely important in keeping you well. And you can control that.

The past 7 days

It's Friday. In the last week, we:
-packed up and moved out of Issaquah
-moved in to Mercer Island and unpacked
-sent a child to kindergarten (looooove her school)
-did acupuncture again (which seems to be helping mimimize my crappy symptoms)
-did chemo
-and today, we celebrate our 9th anniversary. (and to mark the occasion, we are taking me to Swedish Hospital to get some fluids! Not champagne, sadly.)

I love this island. We are really settling in and it's taking no time to feel like home. Everyone has been so warm and friendly to us. Our yard is full of flowers and trees--the kids go out and run and roam and play, and they are totally safe.

Betty's school has been a great surprise. Tons of parental involvement. Great teachers. Lots of enthusiasm. Loads of bonus programs. We hit the jackpot. She's in her second day, but she loves it. PHEW.

I feel like everything has fallen into place. I feel really lucky.

Wednesday, August 22, 2012

Focus, Shelly

In two days, we will leave Issaquah and move into our new home on Mercer Island. Today it occurred to me that I should start packing. So I did, although packing is incredibly tedious. It requires focus and follow-through, neither of which are technically my "strong points". So, mid-box, I took a brief foray to the mall to get the kids' hair cut. We had a nice lunch. Ran around. Now we're back. And look at me. I'm online. Laying in my bed, chomping on Bubble Yum, listening to The Smiths. Writing to you. HI! In some ways, my life hasn't changed much since I was 15. All this youthful radiance! It's blinding!

Betty begins kindergarten in one week. The day after that, I have chemo. I'll be more or less MIA for 3 days. Not exactly how I had envisioned ringing in my child's elementary school experience. Alas.

One other thing I want to share before I return to my backbreaking day. I saw an acupuncturist yesterday. She was referred to my by my friend, a fellow colon rockstar, so I knew visiting this woman would be worthwhile. She doesn't just stick needles in you, though, she's got all these strategies for healing. Big-picture stuff. Too much to go into at this moment (can't you see I'm BUSY, PEOPLE?!), but I think it's going to be really cool and interesting. I'll be sure to keep you in the loop, of course. I'm seeing her again on Tuesday night, and our hope is all this will help me get through the next round of chemo with less side effects.

I wish someone would come over and sit on my bed while I fill boxes. We could gossip, drink Coke and watch TV, too. If this sounds like your thing, call me. 555-DORK. We'll have a big ol' time.

Monday, August 20, 2012

PURR

Feeling human again. Calm. Content, even. Just a little tired. I'm so glad to return to my "happy girl" default setting. I'm even gladder that that's my default setting. Glad, glad, glad. Egad, I'm glad.

Being alive and feeling normal is so delicious.

Wednesday, August 15, 2012

GRRR

I'm in a bit of a mood tonight.

The past few weeks have been utterly gorgeous here in Seattle. Every single day has delivered fun, in one form or another. Beach time. Friends. Creeks. Ripe tomatoes and peaches. Sprinklers. Hammocks. Barbeques. Forts. Naps.

To put it another way, it's felt like a NORMAL LIFE in summertime. Not the life of a chemo patient. It's simply been happy. Blissfully, unremarkably happy.

And now it's the eve of yet another chemo session. The clock soon strikes 12. I will turn into a pumpkin again. As I lie here in bed, curtains blowing in the night breeze, I'm steeling myself for the next 3-4 days of the same old hell. Of long hours in darkened, Purell-scented rooms, monitors beeping, while they pile bag after bag of medicine to my stand. The pain. The vomiting. I won't eat or drink. I simply have to endure that plasticky, inorganic feeling of being poisoned for 72 hours.

It's a stark contrast to the normal summer life I've been leading. The hammock- and barbeque- and ripe tomato-life.

It's difficult to express what a luxury it would be to pass through this night and wake up, laze around in bed with my sleepy kids, and spend another regular day here. To not have to wave goodbye to my daughter as she stands, waving, from the driveway in her jammies saying, "Bye, Mommy! Have fun at chemo. I love you! Come home soon." (She really does tell me to have fun at chemo. Every time. Her heart is so generous.) If I had a normal Thursday headed my way tomorrow, I would not take a minute of it for granted. I so badly want to end this 11+ month cycle of bi-weekly chemical interruptions.

I feel like I should declare a lesson here, something along the lines of, "SO, GET OUT THERE AND LIVE THIS DAY TO THE FULLEST, FRIENDS!" But, no--that's the sublime thing about NOT being sick. Of not having this perspective I have. You get the lovely luxury of taking it all for granted. And I don't begrudge you that one bit. It's truly a wonderful thing. I miss it.

Monday, July 23, 2012

Remember me?

I haven't blogged in AGES! I am sure it's been torturous for you. But here I am, back with a very quick update.

1- my scan in June was GOOD. All cancer spots have shrunk or are now invisible. I really just have one little lung node that's still showing as active, and it's small. My doc says I'll do another scan in Aug and there's a reasonable chance it will be GONE by then. Maybe then I can stop chemo? FOR THE LOVE OF JESUS, I HOPE SO. It's been 10+ months now. Osama Bin Chemo. Which leads us to,

2- Chemo has grown increasingly difficult for me the last 4 rounds. I can no longer eat or drink while on the junk. You'd think maybe that not eating for 3+ days is hard, but actually the prospect of putting anything in my mouth during those times is far worse. Pukefest 2012. I should make tank tops. On the plus side, I probably look great in a bathing suit now.

3- We bought a house! On Mercer Island. We close Wednesday. We move in late August.

4- We've been on the go-go-go. Every day seems quite jammed to me, and I'm just proud that I'm able keep up (more or less) and raise the kids and live happily. We've gone camping. Went to Tupper Lake, my favorite place in the world. I've also been lucky to have lots of friends visit me lately. In general, my life is wonderful, except for that cancer bit. OH THAT.

5-My awesome cousin, Emily, is participating in a walk to raise money for Alzheimers. That @*%! disease has also hit our family, and, like cancer, it must be stopped! If you'd like to help out, visit:

http://act.alz.org/site/TR/Walk/OH-NorthwestOhio?px=4828977&pg=personal&fr_id=1568

We appreciate it!

I promise to be in better touch moving forward.
xoxo

Tuesday, June 5, 2012

Ohio

Today is my last day in Ohio. Been here over a week. Home! I love being here. There's something about the smells and sounds and feelings of the place where you grew up that are extraordinarily soothing, peaceful, and grounding. In my case, it's birdsong and crickets and lightning bugs and hot sun and thunderstorms and thick summer air and wind blowing through huge, leafy trees. I love being home. I love midwestern people. They're the friendliest folks I know. I adore my extended family. I'm so lucky to have the life I do (er-- with one glaring exception.) Tonight it's back to Seattle, then chemo Thursday-Saturday. I feel a little melancholy about leaving and thinking about what's ahead this week, but I'll get through it. I always do. I have a sore throat today and low energy. Probably a cold. It will be interesting to start chemo already a bit depleted. Why not up the hellacious factor a tad. My body likes a good challenge. Praying for an uneventful flight to Seattle with the munchkins. Sayonara for now.

Friday, May 25, 2012

RIP MCA

(I wrote this a few weeks ago, but never published it. I guess I didn't find it that interesting. But here it is now, anyway.)

As many of you know, Adam Yauch ("MCA") of the Beastie Boys passed away recently. From cancer. Of the salivary gland.

It's weird. People die of this disease every day. It seems like I read or hear about cancer (unrelated to my own situation) probably 10 times a day. And when you actually HAVE cancer, you're forced to grow thick skin, rhinoceraus skin, in order to persevere, or it'll crush you. You simply can't get emotionally involved with every cancer diagnosis and death you read about, or you'll go insane.

But try as I might, I couldn't shake off the MCA news. It punctured my gut, pierced right through my grey, leathery megafauna shield.

Why him? Why now?

MCA was diagnosed around the same time I was.  (Him: July '09. Me: Nov '09.) This alone linked us in my mind. Kind of like when you're pregnant at the exact same time as someone else, and you share the milestones of the journey together. Although I recall thinking, "He's luckier than me." His diagnosis was considered highly treatable. In fact, he was quoted as calling it, "a setback and a pain in the ass", but everyone was fired up that they caught it very early, and it was localized. It wouldn't even affect his voice. He was SET.

We were both young at diagnosis. He, 45. Me, 35. In my mind this also set us apart from say, the 98-year old man with prostate cancer. We were both young! We had health and exuberance on our side! We were just kids! Adam and Shelly: Just a pair of punks! (OK--Admittedly, linking us is a bit of a stretch, but in my mind, I could probably roll with the Beastie Boys. Yeah, definitely I could. BFFs. In my mind.)

Then there's the fact that this guy and his crew were cultural icons to my generation. Whether you liked them or not. Starting as adolescent upstarts then maturing into sonic innovators, they never left the scene, never went out of style, never got stale. They had this crazy, creative energy and enthusiasm about life. They had a knack for making everything they touch turn cool. Many scenes from my life are punctuated by a Beastie Boys soundtrack (I particularly favor "Paul's Boutique" and "Check Your Head". I dislike the early Beastie Boys stuff. See? Something for everyone).

To sum it up, I suppose MCA just seemed immortal. And, hell, his cancer wasn't even considered THAT bad. So explain this one: HE DIED! How does that happen?

And! I'm still here. Me, who has never heard the reassuring words, "highly treatable". And I'm doing great. At least I think I am. I'm sure he thought he was, too.  So how am I supposed to feel? Sad? Scared? Confused? Tired? Same shit, different death.

It's just a reminder that cancer is incredibly unpredictable. It's inconsistent with this greater world in which we live, where everything IS predictable. The sun rises, we make coffee, we take this road to work, certain people will fill our days, food will be plentiful, health is a given, mail arrives, weekend plans are made. It all just WORKS. With cancer, you're forced to re-condition yourself to understand that NOTHING'S a given. Sure, you can make vacation plans, but they might not happen. Your cancer might suddenly blossom. Or, it might go away. Either could happen, so just sit tight and wait and see! Better to plan a few days at a time.

It's true, we all feel immune to mortality. Even though we KNOW that we're all eventually doomed (death and taxes), let's face it-- none of us REALLY think our number's going to be up anytime soon. It happens to other people, but not us, not to our close circle of friends. Even I, who am arguably in a worse position for survival than you, don't think this thing will REALLY, ACTUALLY kill me-- because that's too hard to imagine. Who knows what's in the cards? The fact of the matter is, someone reading this blog could very well keel over and die before I do.

And that's why you read my blog. To feel uplifted and hopeful.  You're welcome.

And so, our pact for this week is NOT to keel over and die, to try to appreciate life because it's NOT a given, and it's not forever. Try to treat the people around us like the gifts that they are. And don't do it because they might die next week, do it because that's the right way to live.

"Everyone thinks of changing the world, but no one thinks of changing himself."
-My man Tolstoy

A sinister dimension

I don't usually write while in the midst of chemo because the drugs make it hard for me to string a sentence together.  I don't know-- I get distracted, lost, uninspired, and my tone takes on a, shall we say, pissy quality. Writing (or talking) are some of the last things I feel like doing. (This coming from ME. You know the drugs must be strong).

But I just wanted to tell you, as I lie in my bed, nauseous, and swollen in the face, that I did not have a great time yesterday at chemo. No backflips were turned. And I wanted to tell you this because I think my blog tends to skew towards the "chipper", and the reality is, often this cancer world skews towards the "crapper". And I don't tell you about that side as often as I maybe should.

The night before chemo, I dreamt all these anxiety dreams. I was working in a restaurant (never done that in my life) and I was messing up everything-- customers were mad! Then, we were living in our old home, and there was tons of crime and danger happening right outside, and it made me so anxious and scared! Stuff like that. I rarely have bad dreams, so I figure it was happening because I was dreading chemo in the morning.

The next day, as I got ready, I was dragging my feet. Doing unnecessary things, like flossing. (sorry, mom). I didn't want to go in. I wore a bright pink shirt (HELLO, OPTIMISM. IF YOU CAN'T FEEL IT, JUST WEAR IT!). I met with my doc but our usual cheerful, happy banter was replaced with me just sitting there with nothing to say. My eyes had that perpetual wetness along the lower rims, you know, the kind where if someone said just the wrong thing, they'd turn into tears in .0004 seconds. I dragged my feet up to the chemo floor and slowly made my way to my room. I just COULDN'T muster an optimistic perspective. I just felt blue. Sick of it all. SO SICK OF THIS. 9 months of this so far. Enough! I dug deep, but I came up dry.

Please don't give me a hard time about this next part. I actually told my oncologist, when he asked me why I was blue, that I felt like I was being herded off to a concentration camp. (I KNOW, I KNOW, THIS IS A VERY LOADED COMPARISON AND I MEAN NO DISRESPECT TO ANYONE BY THIS). But here's my logic. As cancer patients, we are forced to be part of this unfortunate select group by utterly random criteria that defy logic. We are a mishmash of people in various stages of thinness, baldness, weakness, and sickness. We often can't eat. Death is a very real possibility for all of us, we just don't know when or how, but we think about it daily. Even hourly. People around us die every week. We see it happen. We are submitted to painful, toxic medicines and treatments that cause us to become wretchedly ill. And though it all, the world around us marches merrily onward, filling its members' time with coffee runs and trips to Ikea and dry cleaning and Facebook and camping trips. I look out the waiting room window and see it all happening, the people plugging away at their days, oblivious to what's going on with us inside these walls. It's not their fault, of course. Why should they be aware of the intricacies of this bleak parallel world? This other dimension. The 12th dimension. (Wait, how many dimensions are there? String theory, anyone?)

(I should add here that even in my toxic, Screw-the-Fates! state, I am now feeling a bit of guilt and nervousness: Someone is surely going to hurl a pie at me for comparing cancer treatment to a concentration camp. Nothing is as bad as a camp. In my world, the doctors and nurses are loving and caring. And we do get to go home at intervals to be with our family, in our comfortable surroundings. So no, it is certainly not the same thing. But there are certain similar sinister elements that link the two more closely than any other two situations I can readily imagine. So let's just say that both are very, very bad places to find oneself, and let's move on.)

On that happy note, look forward to my next blog entry, where I'll tackle the topic of the child-slave trade, or something equally inspiring!

Thanks for reading, and sorry for... everything I've said.  This is why I don't write when I'm on chemo.

Tuesday, May 8, 2012

I heart my blog stalkers

Hi friends,

I took a little unintentional sabbatical from my blog this past month. No reason. I'm not dead or anything like that, so hold off on running to the Hallmark store for a tasteful card to send to Neil. On the contrary, I'm doing really well. Y'all, I STOPPED HAVING ALLERGIC REACTIONS TO MY CHEMO. They figured it out. After months! It was the anti-nausea drugs and the steroids (also given to combat nausea) that were causing me so much woe, so now they've removed them from my chemo regimen, and now I get to do my chemo old-skool -style, full of vomiting and insane nausea but LEST YOU THINK I AM COMPLAINING, au contraire--it's a walk in the park versus doing chemo coupled with an allergic reaction, when your body is almost shut down, and THEN they hit you with 3 days of poison!

Oh, the cathartic joys of a good run-on sentence.

After my last round of chemo, I was actually up and in good partying form by Saturday night. (That's not to say I was doing shots and streaking down May Valley Road, but I was up and at 'em, happy and conversant.) This pleased me greatly, as it showed me I'm not falling apart at all, and I'm still strong as an ox. I love feeling like an ox. Every girl does.

The other ridiculously good news is that, due to my now-stable condition while receiving chemo, I get to return to the out-patient chemo center for my bi-weekly chemos, versus being admitted to the hospital and having to bide my day and night on the dreary oncology floor of Swedish Hospital. BLECH. (Maybe THAT'S the real cause of all that barf...)  I bet no person will have ever been so thrilled to re-enter the out-patient chemo ward as I will be this Thursday. I have half a mind to enter by doing a round-off/back handspring/back handspring/back handspring/back tuck down the hall as they escort me to my chemo chair.

I'm on a good path, people. It's going away again. I'm getting better. It's been almost 9 months of chemo, the time it takes to grow another baby (ah, but who's jealous), and I'm actually getting STRONGER. I've been swimming and hiking and my head is clear. Fuck off, cancer, you picked on the wrong ox.

And a final note to you, my dear blog followers/readers: Since I stopped blogging in the last month-ish, a few friends/acquaintances have sheepishly asked me why I wasn't writing anymore. Then each one of them followed up the question with a back-pedalling, embarrased comment like, "I'm not stalking your blog or anything, I mean, I hardly ever read it, I was just wondering..."

PLEASE know that I am THRILLED that you read this thing. I would never consider you a creep or a stalker. To me, it simply means that you CARE. That's worth a ton to someone in my position. I honestly believe that the collective "you" helps me get better, just by knowing you care. So read away. Comment, if you want to. I love reading comments. Don't be shy. Forward the link if you think it's worth something to someone else dealing this disease. I put this thing on the worldwide web, for goodness sake. It's fair game to anyone.

Wednesday, March 28, 2012

Good scan

The scan results were good. My oncologist was very pleased. Everything has shrunken, or stayed the same. And there isn't much there, total. Considering the fact that I've had to cut back on my chemo at times in the last few months, sometimes missing parts of my doses due to reactions, that's a good result. It could have gone the other way, but it didn't. Also, he's adding back Avastan, which should help even more. I haven't gotten that drug in months.

THE ANXIETY OF IT ALL! Good Lord. How much can a human handle? Eleanor Roosevelt said, (aren't I always quoting her?):

"A woman is like a tea bag. You can't tell how strong she is until you put her in hot water."

I often live my life inside a burning hot thermos, so I get to test this idea often. I'm usually fairly steely, reinforced by something inside I can't really identify. But today, my tea bag ripped open, with loose tea floating everywhere. As I waited in that beige room for my doctor to deliver the results, the anxiety was difficult for me to handle. Rapid breathing. Pulse racing. Uncontrollable fidgeting. Then I started to cry. A bad result would have crushed me, and the anticipation of hearing the news was doing me in.

But I got good news. P-H-E-W.

So now I'm sitting in the hospital room with Neil, waiting for my chemo to start. He wants to watch a show with me, so I've gotta end this now.  Let's hope for a drama-free chemo.

Tuesday, March 27, 2012

Happy birthday, little Rhodes

Today my beloved son turns four. To celebrate, I'm going to get a CT scan at 1:45.

It's a day full of emotion: Joy, at watching him eye his pile of gifts. Wonder, as I listen to his increasingly complicated sentences and thoughts form. Hope, that I'll get to know him when he's twice this age, and that I'll be able to marvel over him and treasure him still. Which leads us to: Dread, that the scans may show new cancer growth. Terror, at times. (Why has my liver area been sore this last month-ish? My Onc tells me it could be "new tumor growth". Gasp. But, to be fair, I did a bunch of cartwheels on a breezy cliff in Hawaii, and my cartwheely muscles haven't been used in a while... maybe it's not liver pain, but muscle pain?) Consternation, that I have to wonder constantly if I'm improving, or if something unseen and evil is again flourishing underneath my skin. Seriously-- imagine having that worry, 24/7, and knowing there's a good chance it's true. And at the same time, be sure to go out and live life to the fullest! It's a fine and jagged line I walk.

I've said it before and I'll say it again: GOD, I love being alive. If it were a matter of will, I'd live to be 117.

Tomorrow, I will do chemo again. I'm not trying to sound dramatic here, but chemo without anti-nausea meds is positively medieval. Kelly, a stellar chemo nurse, assured me that that's how they did it "in the old days". It's a spirit-breaker. You'll just have to trust me on this one.

Sometimes, the most grounding advice I can give myself is this reminder: The one thing I can control is my attitude. Today I will focus on my son. On our exciting and ongoing house hunt. (that other one I mentioned a while back-- we didn't go with it-- not enough storage. Too small of a yard). On the fact that there's no reason to worry yet, and that all this hard chemo work I've done for over 7 months now CANNOT be for nothing. Hell, I may even get GREAT news. Wow, I'm talking myself into a better mood as you and I speak. Thanks for listening, you've helped improve my mood greatly.

I'll let you know when I hear something. Then, I'll tell you about our awesome Kauai trip. Talk soon. -S

Friday, March 16, 2012

Light/dark

Part 1: written two days ago, Wednesday, just before I went into chemo:

"What a great week. So much fun with friends and family lately. Nights out sans kids! Lunch dates! Cousin time! Girlfriends! Long personal emails and even letters! Neil and I are just generally feeling really glad about life.

I have chemo this afternoon (cue the Darth Vadar entrance music), and golly, I'm ready to make it THE BEST CHEMO EVER. I may get those last 4 words tattooed on my neck.

Here's the drill this week:  In an effort to figure out the cause of these allergic reactions, my doctor is going to withhold my long-acting anti-nausea meds. Perhaps THEY are the culprit. So, just chemo, no anti-barf medicine.

Now let's think about this. If anti-nausea drugs ARE the culprit, I'll get to enjoy a regular old chemo. No shaking. No pain. No falls in the hospital! (Long story---let's just say my hindquarters are still purplish-yellow, which should look neat in Hawaii next week.) However, I will also get to experience a nausea like I've never known.

And, if the drugs aren't the culprit, it'll be another night of Satan visiting my hospital room.

Either way, the next few days will be "really something!"

PART TWO, WRITTEN TODAY,  FRIDAY, IN THE MIDST OF CHEMO:

Mother hell. How did I muster those exclamation points? Who was that chirpy girl scout who hacked into my blog? How could that perky female possibly inhabit the same tattered shell of a human as this pasty, queasy, misanthrope who writes you now?

To bring you up to speed: I don't think I had an allergic reaction this time. But it still felt icky. Pain meds required. When the dust settles, we'll figure out what happened.

A lesson: getting chemo without anti-nausea drugs WILL make you barf your brains out. All over your bed, floors, etc. The silver lining is the hospital staff cleans it all up for you. And then, you get to go home and have no desire to touch food for days. This may be the most effective yet difficult crash diet for Kauai ever invented.

Don't worry. The girl scout will return. She always does.

I actually really miss her.

Tuesday, March 6, 2012

38

AINT IT GREAT!

I believe that people who dread birthdays are missing the point entirely.

xo, S

Friday, March 2, 2012

Same stuff, different day

Once again. Another allergic reaction to chemo this week. More shakes, more pain. Pain. Ha. That's one word for it. More morphine. My oncologist is "thoroughly stumped".

Looking forward to getting this 5FU medicine pump unhooked from my chest on Saturday and life flowing back into my limbs. Til then, don't much feel like writing. Just a quick update.

Wednesday, February 29, 2012

Graphing Shelly

I know I haven't written in a bit. I'll tidily sum up the last chemo experience with the word "suckass." I experienced the mother of all allergic reactions to the steroid Solumedrol (sp?), and it kept me in the hospital from Wed night - Fri morning. PTTH. So no, we still don't know what I'm allergic to. We'll try again tonight, as I go in for my next round. Shelly the lab rat. This product was tested on humans.

What's funny is that, at the time of the reaction and just after, I envisioned an elaborate blog post detailing the experience of an allergic reaction to chemo. After all, it's quite a strange, remarkable event (the convulsive "rigors", the kidney pain, the feeling of the drugs, the freaked-out nurses, my own response to intense pain, etc.) and perhaps you would find it all interesting (in a looking-at-a-car-crash -type way). But I couldn't muster the enthusiasm to put thoughts to keypad, since the whole experience is rather all-consuming, tedious, and exhausting. Annoying, generally. Why dwell. And more to the point, there's a LOT more going on in my life than just the treatment of this disease. I sometimes feel like it's inaccurate to junk up my blog with only cancer tales. Even though I started the blog specifically to keep folks in the loop about my cancer treatment. But it's not really an accurate reflection of my life, and the topic is certainly not one of my interests. Imagine if you were writing a 2-year+ blog on a difficult topic which bored you. The Russian Revolution, perhaps. The evolution of time pieces. Mathematical physics. Classical sanskrit. Cancer.

If you deconstructed "Shelly" into a pie chart, the "cancer" section would be just a sliver. An evil, ever-present, significant, but nonetheless small sliver. Part of your life, like a bad relative you wish would go away. (I don't have any bad relatives, but I know I'm in the minority there.)

Take the last few days, for instance. A lot has happened to me other than cancer/chemo thoughts: My sister gave birth to a gorgeous, perfect son about 36 hours ago. We made an offer on a house today. Among many other things. And on that note-- to all my friends: I have been a CRAPPY correspondant lately. I know I haven't returned your emails/calls. I'm sorry. Expect to hear from me soon.

Off to the hospital shortly. Today's Leap Year, so I think that means things are going to be unusal (in an awesome, once-in-every-four-years-only! -kind of way. Like a half-off sale on iPads.)

And PS--once I get over this next chemo round, I promise to write about other subjects. I'm taking requests for topics now. I like a challenge.

Wednesday, February 15, 2012

Super Laura

I just wanted to give a shout-out to my sister Laura. She is amazing.

She is managing their new restaurant, Little Water Cantina. Last night, for Valentine's Day, we stopped in for an awesome meal. She was taking orders, bringing food, chatting with patrons, filling glasses.

And: *She's got less than 3 weeks til her baby is due.*

She's enormous! And she stays up on her feet til the wee hours every night. Then spends her morning doing taxes, payroll, and other stuff I can't even imagine. She works 6 days a week.

She's amazing.

She could go into labor any time. And you know, I'll be at the hospital, too, so that will be really convenient for us both. The Fabulous Baker girls! Keeping Swedish Hospital in business since '06. (TM)

GO LAURA, GO!  XO

Turning back into a pumpkin

Maybe I've been surrounded by kids too long, but I always liken this day (chemo day) to Cinderella at midnight, when all the magic fades and gritty reality returns.  (If you still aren't with me, her coach turns back into its "pre-magic" form: a pumpkin).

For the past few days, I've felt happy, hopeful, full of energy and a lust for life. But oh man... if you could have seen me a two Saturdays ago.

A few hours after my last cheerful post, I had ANOTHER allergic reaction to my chemo regimen. (ps- "regimen" is the word I most often misspell. I have to look it up EVERY damned time. What's your word?)

Another allergy. To what? Not Avastin. Not oxalliplatnin. Not solumedrol. What the heck am I reacting to? Now they think it's the decadron (a steroid). This is 'process of elimination' in its meanest manifestation. Shelly the Lab Rat. Let's give it another try, ol' girl, and see what your body does this time.

Allergic reaction. It sounds so benign, doesn't it. AH-CHOO! Sniffle, sniffle. Oh, the pollen. Cat hair! Itchity itch!

But when you're reacting to chemo, it's a little more intense. In my case, it's hardcore kidney pain. It goes up the back, down the legs, and then it wraps around the front. It's like having back labor, for those of you who've given birth to a sunny-side-up baby.

So they load you up with morphine. After a bit, you're ok again. Dopey and cheerful. You go home, loaded up with a pack of chemo that will continue infusing for 46 more hours. Then you sort of crash from all the morphine. And THEN you get to start the chemo experience.

I felt so rotten that weekend (Super Bowl weekend) that I --
Hmm.
What are the words for it.

Trust me: it was rough. I couldn't even muster a blog post. I was in a dark place.

But. I got better! I always do. I feel FANTASTIC today. And now I'm headed back in. The clock is striking midnight. As long as I don't have another allergic reaction, it'll be dandy: Neil and me, Swedish Hospital, free milkshakes and Netflix. Facebook and online shopping.

Cross your fingers for me. See you on the other side!

Thursday, February 2, 2012

Today is Thursday, February 2nd.

I'm comin' atcha live from a Swedish Hospital chemo chair. I am back in the out-patient clinic for my bi-weekly chemos (vs. an overnight hospital stay), so I'm one happy girl today. Which, I suppose, is technically a little ironic, considering I'm going to spend the next 12 hours getting chemotherapy. But what can I say? I feel happy. Neil's out getting us waffles. It's sunny. I like chatting with the nurses. We've got all the Apple technology necessary to sustain us for 12 hours (one iPad, 2 iPhones, one MacBook Pro). Plus our Kauai guidebook, for our upcoming March vacay, sans kids. 

Hope you are all feeling as happy as I am today. If not, get your act together! Let's make this otherwise unremarkable day interesting. 

Please feel free to entertain me by writing (either below, or via an email) a short summary of what you have planned for today, as I did above. I'll post them here. Even if they are boring. Do it now.  xo

Wednesday, January 25, 2012

The emotional perils of shopping for high-end napkins

A couple weeks ago, I went to Williams-Sonoma to buy a gift. Toward the back of the store, piles of tastefully perky, holiday-themed linen napkins filled the sale racks. Tidy little packets of Christmas cheer, conveniently available in groupings of four. Christmas en Provence? Sign me up!

I remember precisely what I was thinking as I sorted through the stacks:

"Hmm...Pretty cute napkins. These could be nice to have for the holidays--dinner parties, even just for cocktails. And....woah! Marked down to $2.95! I'd totally set my table with these! (Well, assuming I'm still alive. If I were dead, Neil would never remember to put these out.) And actually, if I die, he probably wouldn't even host Christmas, so there'd be no need for napkins at all. Someone would definitely step in and host it for him. Spare him the headache, figuring, 'Oh, he's got enough on his plate, being a single dad and all.' So...Maybe it'd be a waste to get them. But still. That's a pretty good deal. Ok, I'll get 'em. Should I buy just one set (4), or two sets (8)? Probably eight, since we'd have family over. Then again, if no one's in town, it MAY just be the four of us: Me, Neil, Betty, Rhodes. Just an even four. Not five or anything. Because we probably won't be able to have any more kids. Probably won't get the chance. Not anymore. Damnitalltohell. OK, I'll get two sets of four, just to be safe."

I purchased eight holiday napkins that day.

You may be wondering where I'm going with this somewhat rambling and innocuous-bordering-on-boring anecdote.

Perhaps it's best explained by contrasting my above reaction with other women's reactions to the same situation. I'm suspect that most other women, looking at these same napkins, would experience a thought process that goes something like this:

"These are cute. I love holiday parties! Are they on sale? Oh, awesome!"   --Fin--

When you're living with a "disease", even if you're managing to live fully and happily in spite of it (and I am), you view situations ever-so-slightly differently than you did before. Try as you might to block out scary thoughts, they still manage to creep in to your every interaction. The disease casts its sinister shadow, always. Even if only slightly.

Even in the simple act of shopping for napkins. What could be less a provocative, less incendiary situation? And even THAT kicked up the topics of: my death, my widower husband, and my inability to be in charge of how many kids I might produce.

Those are weighty topics to blindside you on a Tuesday morning in the mall. Merci beaucoup, Williams-Sonoma.

And there was something else going on here, something even more unsettling. This particular situation challenged me to come clean and admit to myself how I REALLY felt about my chances for a future. Will I be alive to use these damned napkins, or not? Do I really BELIEVE I'm going to beat this cancer? Neil aint gonna use these napkins on his own. Don't buy 'em if you're not truly expecting to use 'em.

Decision time: Put your money where your mouth is, Shelly.

As I said: I BOUGHT EIGHT.

To be honest with you, I'm not sure how many Christmases those napkins will see. I hope those suckers get used so many times they become pinot-stained, frayed, musty, and faded.

But the truth is, I don't know.





Wednesday, January 18, 2012

Night Owls

Would you believe that Neil and I have to drive to the hospital (Issaquah to Seattle) at TWO A.M. tonight, just to get my chemo pump unhooked. In this storm! Can't have that pump running dry for too long. I have half a mind to rip it out of my chest myself, right here in my bed. Just like they used to do, on the frontier, in the days of yore.

If anybody happens to be along the I-90 corridor around 3 a.m., let us know. We can totally catch up-- see ya then!

MLK day, a snow/chemo day

Monday was MLK day, and in Seattle it was also a big SNOW DAY, which to you non-Seattleites might not mean much. But here it means, EVERYTHING IS CLOSED!, the roads are A MESS, and there's a complete overkill of 24/7 news coverage about the fronts coming in. They even christen the storms, much like hurricanes, for the news coverage. This one is named, "WINTER BLAST!" but I've seen "Snowmageddon" and "Artic Chill!" and numerous others over the years. Complete with their own logos. In Seattle, the storms themselves become local celebrities.

Aside from the hype, it's a fun time to live here. Everyone's sledding and skiing and filled with that particular sense of excitement that potentially perilous side streets and closed-down businesses bring. People unite in their giddiness. They whip out the furry snow hats, sleds, and hot cocoa. Plus, with its surrounding mountains, lakes and huge pine trees, this region is GORGEOUS when covered in snow. Tough to beat. 

So. I wasn't thrilled about packing up and heading to Swedish Hospital for the fun snowy holiday. Especially if it meant another day of shuddery, steroid-induced writhing, pain, and then too much morphine and dilaudid. At least on the 12th floor, there's a nice view of the neighborhoods below, so we could vicariously share in the fun.

Ah, but here my story turns happy again. 'Bout friggin time. Without going into too many details, we have learned that I am NOT in fact allergic to oxaliplatin-- PHEW-- as this is one of my two main chemo drugs, and I kinda need those to keep working for me. Instead, I am allergic to Avastan, and I'm actually the first person my famous oncologist knows who is! Aren't I a specemin to behold.

I was able to take in all my chemo, and we left the hospital the minute it was done dripping into me, at 4 in the morning. NO, WE DO NOT WANT TO STAY THROUGH TIL THE MORNING, THANKS. 

Now that we know I'm not allergic to "Oxali", I don't have to have receive my chemo at such a preventative, slow rate, and I don't have to be dosed with loads of steroids and Benedryl beforehand. This means I am able to spend the long chemo day alert, chatty, and doing useful things, like watching Netflix, reading, or walking the halls. 

And I should add, that when I'm walkin' those halls, I'm not just walking. I'm HAULING ASS. I hitch up my teal-colored hospital pants tight (who cares about my bare open back swaying in the breeze-- all the ladies at the Golden Globes were backless), and I grab that IV stand and WE MAKE SOME TIME DOWN THOSE CORRIDORS, SISTER. In fact, I took one turn so fast that part of the stand snapped off and crashed to the floor, batteries flying. I like to impress all the nurses with how frequently I pass their station, letting them witness firsthand the blistering speed with which I am able to circle the entire ward. YOU CALL THIS 'SICK', MOFOS?

On a side note, while Neil and I were pausing in the lounge, a man strutted in. He wore a delivery-guy uniform. He glanced at both of us, me standing there in my teal hospital uniform, one arm on my chemo stand. So I said, "Hi! Pretty day out there, isn't it?" He nodded quickly, almost angrily, and he spit back, "Yep. It's comin' down all right. 'Sposed to get more, too. And I HAVE TO DRIVE IN THIS! IT'S MY JOB! Jesus!"And he stormed out of the lounge dramatically, allowing the impact of his situation to sink in.

Neil and I looked at each other. I looked down at my barf-colored regulation jammies, then looked at the sign directly behind me reading "ONCOLOGY UNIT", and we just burst out laughing. BOY, does HE have it bad! I'm just glad he was able to let it all out. Sometimes all you need is an understanding ear.



Friday, January 13, 2012

good scan

scan was very good. tumors down by 30%-50% from last scan, which was also good. we still have work to do, though.

chemo at the hospital was a disaster. we had to cut it short due to a crazy allergic reaction and i get to go back on Monday for more. now it seems like we're learning i'm not allergic to oxalliplatnin, but avastan. looking forward to getting it sorted out. i'm so over it that i don't even want to write about it anymore. maybe someday I will tell you about it. but not now.

Monday, January 9, 2012

Back in the ring

The above title is an extension of the boxing reference I made in the previous post. I'm going to ride this theme til we're well beyond the hokey stage. Because it's a KNOCKOUT!

I just wanted to let you know that I am all sorted out and ready for another week of chemo. I'm feeling strong, calm, and I'm thinking positive thoughts. I don't care too much that I have to hit the hospital. It'll work out. Feel free to visit. I'll even buy you some clear broth. All I gotta do is dial a few numbers, and voila. It's like the Ritz Carlton.

In other news: I have a CT scan tomorrow. I'll know the results by Wed, and I'll post them here. Cross your fingers, toes, legs, eyes.

We had a great snowy weekend in Mazama. I loved racing down the hills. Sitting by the fires. Drinking beer and feasting with friends.

You know, I really LOVE being alive. More than most people, I daresay. (them's fightin' words, I know... but hey, more boxing references were needed. I promise the theme ends after "this round"!) Even if I have to spend the night in the hospital getting chemo, at least I can be in charge of deciding if I'm going to be grouchy and angry, or if I'm going to make it a good day.

And that's true of every day, mine or yours, isn't it.

Friday, January 6, 2012

Bah humbug

Last week's chemo blew chunks.

I had another allergic reaction. Kidney pain, shooting up and down my back. When this happens, there's no way you can sit or stand that feels even remotely comfortable. It feels like being in active labor. So then, pain meds, dilaudid again, which made me paranoid, sweaty, and nauseous. Strung-out. To keep the reaction manageable, they s-l-o-w-e-d d-o-w-n the rate of the the drip to an o-b-n-o-x-i-o-u-s t-r-i-c-k-l-e. What should have taken six hours ended up taking about 13. THIRTEEN HOURS IN A CHAIR.

AND. Because they were giving me the chemo drugs at such a slow rate, the clinic closed. LAST CALL! So I had to be admitted to the hospital to finish it up. Neil and I spent Thursday night on the oncology floor, just so I could receive all my chemo. Lacks a certain joie de vivre, that place.

I rang in the new year gagging and shuddering, hooked up to that stupid crap. Not feeling sorry for myself, more just annoyed and a little angry. Trying to be patient, but running out of patience. Reading Facebook posts from people proclaiming that this is going to be the best year ever! And let's booze it up, friends! And God bless 'em all, they SHOULD be happy. But so should I.

THEN. I received a call from my doctor telling me that for ALL future chemo appointments, I will report to the hospital for an overnight stay. DO NOT PASS GO. Because it just takes too long to complete it within the clinic's working hours. So, bi-weekly, overnight hospital stays in my future, from now til... June?

This is getting old.

Because we have brains and souls, I don't think we humans are particularly well suited for the cancer experience. We're too logical, and we have too many emotional chinks in our armor. Cancer takes all kinds of cheap shots, and it doesn't follow any rules. You have to be endlessly adaptive, constantly seeking out a hopeful perspective, or you'll go mad. So, regroup, and get up again.

I often feel like Cool Hand Luke in the famous boxing scene, where he's totally outmatched by that big bully but he keeps on taking more hits. I keep on getting back up again, and blindly, almost pathetically, I continue swinging my fists at the air.