Monday, January 7, 2013

"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.

Wednesday, January 2, 2013

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.