"Worst patient, ever"

I am an overachiever! A winner! Here's how:

Thursday, when we met with my doctor before I started the new course of chemo, I asked him, "Will this chemo be easier on me than my old kind?"

He replied, "It couldn't be worse."

So I said, "True, that was rough. I had some pretty bad reactions, didn't I?"

He shot back, "Shelly, in my 40 years of doing this, I have never had a patient react worse than you."

This silenced me. I stared at him, trying to digest this. "What do you mean?"

He continued, "I've never, ever had to hospitalize anyone else for oxalliplatnin. I've never seen anyone sicker than you would get."

I stared at him longer, contemplating this bit of information. My oncologist, one of Seattle's finest, with his bulging client list, seeing hundreds of people a week for forty years, and I'm the WORST REACTOR HE'S EVER SEEN?

Huh. So... you're telling me... IT REALLY DID SUCK, WHAT I WENT THROUGH.  Disbelief, peppered with a strange sort of validation.

He said, "You can close your mouth now." 

Wanting to be perfectly clear, I asked, "So, compared with other people, in terms of how bad it was for me..."

He cut me off, "Shelly, on a scale of 1-10, you were a 31."

Well, now. Look at the big balls on Shelly. All those times I felt like a prisoner of war, strung up by the arms in a dark concrete room (Ok, yes! Dramatic. But I truly sometimes experienced visions of torture scenes while I'd be experiencing this stuff. I've seen the show "24". I know what a North Korean prison looks like.) And it turns out, I was right. It was really, in fact, THAT BAD. Not that I ever doubted it. But it sure is nice, when you've been dealing with something brutal for a year and a half, to have someone "in the know" acknowledge it. In a world where we never celebrate (or even really acknowledge) toughness or endurance (not because he's unsupportive, but more because, it's expected of you, it comes with the territory, it's not a "bonus, extra quality"-- it's essential)-- anyway, in this sort of world, I feel like I received an exotic, bright (if fleeting) piece of news. It was like an opal-rumped tanager or a Swainson's Lorikeet, or even a purple-headed glossy starling, came flying through the room, then left.

He also told me he loved me. So I have that going for me, as well. 

Even the chemo nurses told me they would shudder when they saw me on the day's schedule. Turns out I'm a neat person to know!

And how did my new chemo go? The act of getting it was a breeze. No IV morphine required, for a change. I felt well that night, too. Then, out of the blue, I barfed rather violently. Friday was spent in a chair, not eating a morsel, watching TV, trying not to puke. Feeling sick in the gut. I watched "Footloose" for the first time ever. And several episodes of "Snapped". Etc.  Saturday I felt much better. But alas, I have to do it again this week. My new schedule is Thursday on, Thursday on, Thursday off. Thursday on, Thursday on, Thursday off. So it's more frequent than my old regimen, but probably less days overall where I'm totally out of commission.

I asked him how long I could expect to be on chemo, knowing he can't answer at this point, and he told me that 9 months might be a place to set our expectations. 9 months plus the 15 I just completed. And! I probably will NOT lose my hair, so we have that going for us as well.  I can do this.

The kids are alright

My daughter is 6. We've talked about cancer and chemo with her before, although as she grows, we find ourselves having to go over things again with her. And with each revised conversation, there are more questions, as one would expect from a child with a quick, ever-developing mind.

You never know when your favorite person in the world is going to blindside you with a hard-hitting, gut-wrenching question. And your answer is as vitally important as the question itself. So you have to be ready, at all times. The way I navigate that minefield is by simply offering her the truth.

The truth, wrapped in a soft cozy blanket.

Today, as we were driving home from swim lessons, she asked me if we could wake up early tomorrow, just the two of us, so we could play together before school. Aww. A request as sweet and benign as that made the reply a bit tougher to muster. "Well, hon, we could get up really early to play for a little bit, but Mommy DOES have to leave early because I have chemo tomorrow."


Her response was passionate. "What? NO! WHY? NOT AGAIN! I THOUGHT YOU WERE TAKING A BREAK FROM CHEMO! I HATE CHEMO! PLEASE DON'T GO TO CHEMO, I HATE IT SO MUCH! IT MAKES YOU SO TIRED!" Insult to injury. I told her that I hated it, too, and it was no fun, but it was what my doctor said I needed to do now. She grimaced and complained some more. Then a smirk spread across her face, and she asked, "What if your doctor told you that you had to get a new TV? Would you do that?" We both laughed. I told her I probably would. The car got quiet. Then she asked, "Wait...WHY do you have to do chemo again, anyway?" Ugh, not this one again. So I told her, "Well, it's medicine, remember how we talked about this? It's for that thing mommy has, that thing called 'cancer', remember? Cancer is a kind of sick. Chemo helps keep the cancer from making me get sick. It's stupid, I know, that I have to take medicine for THIS LONG, but that's the way it goes." She thought about this for a second, then said, "Mommy! Did you remember to pack my ponies in your bag?" Ok. Cancer conversation complete, I guess.

So she's up to speed. And she seems ok with it. Her biggest concern is my fatigue. She isn't aware of the big picture yet. I'm grateful for that.

And yet, I think she senses there's a fragility to me, almost as if she feels I'm a precious gift she doesn't want to take for granted. Toweling off after her bath tonight, she told me, "Do you know how I spell 'love'? It's 'M-O-M-M-Y.'"

I will never stop fighting.

The worst in-law, ever

Tomorrow is January 3, and I will begin a new type of chemo. It's called Irinotecan.

No more FOLFOX, the chemotherapy with which I've become intimately familiar over the past 3 years.

It's really peculiar, the whole "getting used to" a specific type of chemo. It's a forced relationship with a really bad apple. It's like learning how to deal with a particularly offensive in-law: Against your will or better judgement, you must spend hour upon hour of otherwise productive time in their annoying company. You learn to navigate through their quirks and how to steel yourself against their many unpleasant attributes.  In the case of chemo, it means you learn massive amounts about puking and forced fasting. And pain. You learn to pack Kleenex with you for the times your nose starts bleeding in public. You learn to stiffen your upper lip while you're being injected with a wasp-sting shot in your stomach. (Why complain? What good will it do?) This and so much more, you learn.

I just did a quick search on the side effects of Irinotecan. They sound pretty abysmal. The one I'm least excited about is probably the hair loss. Alopecia. It looks like my hair will likely thin, and I could even lose it. For all the BS I've endured thus far, I haven't lost my hair. I always took comfort in that. Losing hair from chemo makes you stick out like a sore thumb, and you then have to deal with people's unstable reactions, 24/7. For a person like me who spends too much time considering others' states of mind, that would be a real burden. An unproductive, bad use of my energy. Just writing about hair loss is making me depressed.

On a less superficial level, there can be other, more serious side effects, though I won't know what they are til they happen. It's not the most settling way to enter the new year, wondering if the poison you're going to be getting will be a little "too poisonous".

Anyway. Not the most uplifting post, but there you have it.

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.

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.

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. 

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.