Keeping My Lemon Drops

Whenever the port gets flushed with saline, I can smell and taste the echoes of it. This is apparently common, and the nurse tells me that some people like to suck on lemon drops to  avoid the metallic unpleasantness. I thought about this, but I am pretty fond of lemon drops. My grandmother used to keep a bag of wonderful ones in her house, where you could suck out a little bit of white, sour lemon powder out of the center before enjoying the rest of it. (Russell Stover candies, maybe?) I've always liked sour and tangy foods. I'd hate to give them that bad association of "Here we are, about to start chemo" and lose them forever. No lemon drops for me.

"At Least You Won't Lose Your Hair With This Chemo"

I heard a few times that this Folfox chemo wouldn't make me lose my hair. It was supposed to be one of the upsides of colon cancer, such as they are. Then our GI oncology nurse told me it was more like 50-50 odds, and to come down and have them shave my head if it started coming out in handfuls.

I remember saying a few times that it would not a huge deal if I fell in the wrong 50, it would only be for six months, hair would grow back, etc. But when my hair actually did start coming out yesterday, a few days after treatment #2, I had to retract all that. I do care. It is so creepy. It's like the definition of something going bizarrely unhealthily wrong. And, for the kids, I don't want them to have that shock and that knowledge. I mean, they saw me go into the hospital once before, when the baby was born. They've seen people throw up before, it's not a "weird" thing. I was hoping to shield all of us from the big in-your-face statement that something is really wrong.

Chemotherapy and Geocaching

That's generally an oxymoron, but my family's geocaching hobby did come in handy for a sense of security. Now on my key ring, a microcache container holding a supply of anti-nausea pills. I'm surprised how much more confident I feel away from home knowing I have them if I need them.

Chemotherapy Incidentalomas

The chemotherapy has plenty of real side effects, and I've been impressed with how precisely they conform to the descriptions I got. (Pins and needles in hands. Feeling of ground glass drinking cold liquid.) But I'm so on the lookout for side effects, I also get scared by random things popping up that, on reflection, probably have nothing to do with cancer or Folfox. The list includes:

1. Unable to move thumb for a few minutes
2. Odd feeling that lower leg is asleep or has something bound around it.
3. Itchy raised rash

Normally, these things (if I even noticed) would make me think, carpal tunnel? Slept wrong? Allergic to adhesive on the bandage? And I think that's all they are. It's just hard not to see everything through the chemo lens.

One Other Thought on "Winning The Battle Against Cancer"

The only times I really freak out about the possibility that this cancer might kill me is when people tell me "I know you can beat this!" It raises the idea that I won't.

The War Against Cancer

I was asleep by 9 p.m. the first few days after Round 1 of Folfox because I couldn't stay awake, and then asleep by 10 or 11 the days after that because it seemed healthy and prudent. Now it's almost 1 a.m. the night before Round 2, and I just don't want to get in bed and let the day end.

I was surprised and glad to see the side effects recede as the days passed this last week. The prickling hands faded, the freezer was no longer an enemy, I could eat. And I'm just not looking forward to having them all come back and worse.

People keep talking about this as a battle, like in the obituaries when they talk about fighting a brave battle against cancer. And I guess I should think that way too, as though the chemo is battling on my behalf, destroying cancer cells and "beating" the disease. It's hard not to think of it instead as a poison pill, something that tears down the body so that you're whispering to the bad cells "You don't really want to be here. Not worth your while. Take over some place else."

Sex and Chemotherapy

Our main nurse gave us a great pre-chemo "teaching session" on what to expect and when to get alarmed. We left with so many prescriptions that they filled half my cloth shopping bag and I taped up instructions inside the medicine cabinet for which to use when (I've been especially grateful already to Zofran, Compazine, Reglan, and Ativan).  And we got the message that of course I had to stop nursing the baby, and should flush twice after using the toilet, and should clean up any vomit with great care, and I got a biohazard bag for disposal of things containing bodily fluids.... 

... 

so I was surprised that we had to bring up sexual contact on our own. I mean, it's not like I expected it to be a huge issue during these months of chemo, but surely it occurs? And isn't that all about transmission of bodily fluids? Why didn't anyone either proactively tell us it was OK or warn us off?

I was also surprised we didn't get more absolute replies when we did ask. It sounded sort of like, "why don't you wait a few days after chemo to be safe," which sounds good (and realistic, given the side effects to date) and yet less definitive than I would like. No buzzkill like wondering if you're transmitting vile toxins. I brought it up with a different nurse the day chemo began, and she sort of laughed (in a nice way, but still) that we were considering the issue, and suggested only on the "off" chemo week. But again, the voice of certainty just wasn't there the way it was for milk or vomit.

I went so far as to google "Folfox" and "sex," but boy, are my targeted Internet ads thrown out of whack now!

How Having Cancer Is Like Having A Baby

In a bizarre way, having cancer affects your life a lot like having your first child, though in an entirely negative way. Going for a post-CT ultrasound was like the surreal evil twin of the pregnancy ultrasounds. The best we could hope for was neutral news ("not liver metasteses!"), not the dizzying excitement of the new beating heart that we'd seen on other trips. The side effects after this first round of chemo make me think of the bad pregnancies where friends reported constant exhaustion and ate Zofran like Pez. The "dinner train" of meals from friends is so welcome post-chemo, such a lifesaver when we are most overwhelmed, just as it was when we brought our firstborn home. Entire categories in the drugstore are now newly of interest (stool softeners, now, instead of diapers).

But I see the similarities most in the sense that you have entered another country, and the inhabitants are so helpful and kind and willing to help out with the shock obliterating your sanity when you're dumped into this new land. Instead of giving advice about sleeping when the baby sleeps and nursing on demand, strangers and near-strangers are stepping up to tell me about making it through their own regimes of chemo, the times they had strange CT scans and lived to tell the tale, the weeks and months they felt lousy and how those times can actually fade into the past. One friend put it, if I remember right, something like this: "Welcome to Cancerville. It's a hell of a place, but the people are great." I hate to be here, and I hate that my kids have to see me here, but I'm so grateful for the company.

Purely grateful, no whiplash

When we got back from chemo last night, a parent from my son's school had dropped off dinner with the babysitter. They had already eaten, and we got to sit down to a dinner without shopping and preparing or worrying about a thing. Honestly, the kindness of family and friends and colleagues and even near-strangers has been the silver lining in this whole horrible thing. It's hard not to feel lucky even as you feel so unlucky. (Sorry, just a touch of whiplash after all.)

First Chemo

After the creepiness of the port and the shock of the blood clots and the frustration of getting the blood thinner, chemo itself was... anticlimactic. I hope I don't really regret saying that a couple days from now. Sticking the needle in the port was creepy, yes. But then it was all basic. The saline had its characteristic odd taste in the back of the nose, the bags of things dripped down, and I don't feel sick yet. Knock on wood. Knock on wood. I did a little bit of work, got wiped out and napped, and that was about that. Home now with the pump slowly making its camera clicks every few minutes and hoping it goes smoothly. I've lined up all the nausea meds in the order recommended.

I did feel the first side effect; going out to get the mail my lips and hands prickled and stung with the cold. And filling the 4-year-old's water bottle before bedtime my hands prickled again, so clearly something's going on there. Now to bed and to wait and see.