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.

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.

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.

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.

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.

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.