Monday, December 19, 2011

Home for the Holidays

Shelly here, comin' atcha live from the banks of the Maumee River, in lovely northwestern OHIO! My four-person posse flew back yesterday. It feels Terrific to be home. Capital T.

In the last week, several friends who were feeling out of the loop with my health situation asked me for a "status update". So here's a very high level picture, in case you are curious, as well.

This past spring, I received radiation on my lung and liver to clear up the two teeny tiny remaining spots of cancer. We coasted through the year happily, assuming the radiation had worked. In August, we learned it had NOT worked, and the teeny tiny spots had grown and multiplied slightly. So, I began chemo again.

All chemos are different, depending upon the type of cancer (breast vs. colon, for example), and severity (stage I vs. IV). Some run for a few weeks, some for years. My regemin, for colon cancer, is called Folfox. I receive it every other Thursday--two times a month. On those chemo Thursdays, Neil joins me in our little private room, and I sit in a chair and receive IV bags of all sorts of drugs, including steroids, anti-nausea drugs, vitamins, and finally, the two chemo drugs. The combination of all of these is known as "Folfox". It takes hours, but while it's happening, we do email and watch movies, and as strange as it sounds, we have a pretty good time. (Ok, the preceding post would be an exception to this statement! Last time sucked. Win some, lose some.) Getting back to Neil, though, how often do you get to spend 8 hours alone with your loved one, with no distractions? It's almost like a date. Almost.

I then go home, but I have to wear a pack of constantly-infusing chemo for 46 hours. With all the tubes and tape, it sort of looks like I have a bomb strapped to my chest. I keep hoping I'll get to fly on a day like this, just so I can rip open my shirt and freak out the FAA crew. "CODE RED, THIS ONE'S WIRED!"

On Saturday, I get the infuser unhooked, and, free at last, I get to go on my merry way. It's not typically all that "merry" on Saturday and Sunday (nausea, malaise, depression resulting from feeling beat up and beat down. And beat through. And under. And next to), but in 48 hours or so, I bounce back and feel "normal" again. I'm lucky for that.

Two weeks later, I repeat the cycle.

I don't lose my hair, and I'm pretty peppy on the non-chemo days. I dare say, most folks would never suspect anything was "amiss" with me. You really can't tell.

Please forgive the shoddy writing here--I am blasting through this particular post, because I have presents to wrap and cookies to frost. For a better, more interesting description of what it's like to have chemo, check out my blog post from the month of September entitled, "I'm nothing but a fruit fly".

How long will the chemo last? It's hard to say. It's not like, say, strep throat, where you take a course of medication for xx days and can expect xx results. It's more of a moving target. I am planning for it to last at least as long as last time around, which was nine BLESSED months. It could be longer. BUT: I had an early scan a few months ago and the chemo was working beautifully, like last time, and the tumors were shrinking like mad. So, I have every reason to believe the same will happen this time. Knowing that allows me to get through my days in a relatively happy manner.

My next scan is in January. I'm expecting more good news then.

I know this is all pretty heavy stuff, but if it makes you feel any better, we are actually feeling pretty good about things. The chemo's working. Who knows what the future holds? You can't waste your life agonizing over what MAY be, especially when it's simply unknowable. All that's certain is the NOW. And right now, I feel just FINE, we are surrounded by family and friends, and we are pretty damned happy for that. I guess you could call us "blessed", as strange as that might sound. But I do feel that way.

Of course, there's always a little room for improvement.

Thursday, December 15, 2011

This is my brain on drugs

In the spirit of "keeping it real" and "full disclosure" and all that, I'll let you know that today was a rotten day. It was a chemo day, and I had an allergic reaction to one of my chemo drugs, Oxaliplatin. In what's now been 12 total months of chemo (9 months in my first course, and 4 months now this time around), this has only happened one other time. Last time, the reaction turned my torso a magnificent magenta, and I couldn't stop sneezing and itching. It was kind of a big deal to all the nurses, even though I felt relatively fine at the time-- I guess that kind of thing can be a bit dangerous if they don't get under control.

Now, 5 chemo cycles since the last reaction, the allergy again reared its shit-for-brains head. This time it took the form of semi-intense lower back pain. It felt like the moderates stages of back labor when you're about to give birth. Apparently my kidneys weren't digging the experience. To fix matters, they had to halt my chemo, give me a few hits of Dilaudid (ever seen the film, 'Drugstore Cowboy'? This is the morphine derivative that those junkies seek when they knock down the drugstores. Suckers. I can get that shit for FREE), wait a bit, then re-start the chemo on A V-E-R-Y S-L-O-W DRIP. What should have taken 4 hours took 8. We arrived at 8:40am and left just after 7pm. I was sitting in a chair most of the day, quite uncomfortable, alone with Neil, my nurse, Leah, and my spinning thoughts.

There were a few times I grew very upset today. I cried multiple times, sometimes quietly, sometimes blabbery and sloppily, out of frustration, fear, fatigue, anger, and pain. Usually I can handle those first four emotions well enough, but when you add the "pain" layer, your coping mechanisms quickly disintegrate and you are left feeling raw and weak. Susceptible to scary thoughts. I hadn't felt this way in a long time. (For proof, see my previous posts, even the one I posted earlier this very morning, for goodness sake, to witness the emotional see-saw).

Yep, that's the weird thing about this disease and its treatment. It can propel you into a sudden tailspin, with no warning. It spares no one, not even a balanced, strong-willed, happy, guns-blazin' person like me. Sometimes I wonder if after a few years of this, I will finally crack. I DO have my moments. I just wanted you to know that, since my last few posts have been all rainbows and cotton candy.

Speaking of pretty colors and sugar, the day did have some bright spots. My friend, Leena, and my mother-in-law, Bea, covered my childcare for much longer than they originally planned, and both kids returned at the day's end full of happy stories. I also received several sweet, unexpected emails from friends I hadn't heard from in a while. Those made me smile. They always do.

And, in my high-on-Benadryl -phase this morning (they give me 50ml of that drug, and honestly, it makes you BON-KERS!), I accidentally emailed a druggity drugged-out note intended for my friend Julie to my cousin's best friend in Ohio. Considering I've never once emailed her before, I'm sure it came as a surprise, hearing the news that even though I was totally high, I wanted to provide her with my new mailing address. Suave.

For that matter, if you ever feel like a good laugh, put yourself in my path every other Thursday around 10:30ish. I shock myself and undoubtedly others with the asinine, unfiltered comments that come flying out of my mouth.

Thanks, Benadryl, for the memories. Thanks, Dilaudid, for the lack thereof. Thanks, Oxaliplatin, for NOTHIN'. Should I win an Oscar this spring (Best leading actress, DRAMA), this will be part of my acceptance speech.

One hundred years, minus one day

The other day I was driving the car with just Betty on board. Just mama and her girlie. We have so much fun in the car. We play this game where we try to crack each other up by making silly faces at each other via my rearview mirror. We were also singing along to Christmas songs and holding hands during stoplights. I love that crazy nutball.

As we crossed Front Street, she said, “Mom? You know how in ‘Winnie the Pooh’, at the end, he says, ‘If you live to be 100, I hope to live to be 100 minus one day, so I never have to live without you’?”*

And I said, “Yes?”

She said, “That’s what I want to happen with me and you.”

I am getting used to my kids saying things that, considering my situation, hurl a dagger through my guts. Lately, though, it’s getting a little easier to hear some of that stuff because I have once again decided I am definitely going to live for MANY YEARS. I have to admit, I waffled back and forth on the feasibility of this ideal outcome for a few months after my recurrence. But now I am back to feeling like I am going to conquer this thing. Assuming I have any say in the matter. And, you know, I really think I do.

Tuesday, December 6, 2011

Holiday Casserole

Hey there, friends! Long time no blog. You may be wondering how we're doing since I've been so uncharacteristically e-silent (surely it's a word) these last few weeks.

I don't know what's come over me, but I've just felt so damned PEACEFUL lately. Sort of mildly anesthetized with happiness. I feel all this goodwill towards others-- why? I frequently find myself striking up unnecessary conversations with strangers in stores (I feel like I've actually found some unexpected friends this way-- I can still recount all the conversations). I feel extra generous. I've been rounding up when I tip. Even tipping people who don't necessarily need to get tipped, like mumbling take-out clerks who won't make eye contact with me. Smiling maybe a bit too earnestly at strangers I pass on grimy Rainier Avenue South, even if they seem scowl-y. (Ok, especially if they seem scowl-y, because, CHEER UP, PEOPLE.) Asking folks with less groceries to go in front of me. And I've been "slowing it down" more than I used to. I've stopped my car off the winding, 2-lane highways to show my kids the clouds lingering thickly over the mountains, or the way frost is now settling over the field. (Please don't groan. I really did. And it was really cool for all three of us.) We personify the goats and horses as we pass their paddocks on our way to town. We've got them all named and have developed their personalities and voices. I've felt extra patient, wide-eyed and curious, quietly calm and content. The Eagles would call it a "Peaceful Easy Feeling". I'm not sure what Menudo would call it.

We've been filling our days with all the characteristic happenings of November and December: turkey-eating, Xmas tree cutting/decorating, shopping, Nutcracker-ing. Dressing the kids up in holiday jammies. It's all seemed like a joy to me this year. Not a big production, just an easy, happy time. I'm serious. I don't quite understand it.

I'm not trying to paint some hunky-dory (I had to use that term, I've always hated its clunky, hyphenated weirdness) portrait of my life, I'm just reporting it as feels. Today it occurred to me, you know, Shelly, this is really such a tremendous GIFT you've got going on here. OKAY, OKAY, I KNOW, I've also some serious lumps of coal in my life's "stocking" (wince. the writing!) these days, but let's forget that for now. And we're not ignoring it, but it's just not as INTERESTING or valuable as the recognition that true happiness is a gift. That phrase I just used, "true happiness is a gift", sounds so played-out, almost trite, in its simplicity. But really, consider it. I know I am dealing with cancer. That's NOT a gift. That's a slab of shit casserole served cold and raw on my plate. But the ability to feel truly happy IS a gift. I am SO LUCKY to have cultivated it. I've got so many friends dealing with various unhappinesses now (health crises, relationship struggles, career dissatisfaction, family issues, loneliness, low self-esteem, regret, fear, etc.), and I really feel for them, just as they probably feel for me dealing with all this crappy chemo and cancer. I wish I had their health--I hope they appreciate THAT. But I'm so deeply appreciative for my peaceful state-of-mind and my overall "happiness". It's got to be helping me in this stupid "fight". Imagine me using my fingers to punctuate all those quotation marks I just heaped on you.

I guess we all have our shit casseroles AND our gifts. What a holiday table that makes. The trick is to appreciate the good things you have going for you, of recognizing a gift when it arrives, however it's wrapped. If you can do that, THAT'S a gift.

It's even better than a Chia Head.