Scanxiety

My first MRI -- and my first scan since starting chemo -- came back clean. No blood clots (which is what they were actually doing the test to see), no masses, no enlarged lymph nodes, no ambiguous findings to make us tear out our hair. (What's left of the hair, anyway.) It was a surprisingly big relief. I haven't focused much on the big picture during chemo, but something about going through a scan made me terrified all over again about what it might show.

Stressful meaningless numbers

So, my CEA, a measurement that can be correlated with colon cancer, has slightly been on the rise since the chemo began. I don't have much faith in the number anyway, as it was normal in my case even with a tumor still in my body. And it's still within normal limits now, just trending upward. I have no doubt at all that this trend is completely meaningless, but it still ruined my afternoon to see the latest lab results today and see that relatively big jump. I know that it's crazy to worry about it -- I have real things to worry about, and I'm trying not to worry about even them -- but I wish it hadn't been that way.

Cut Hair, Shave Head, Die?

My hair is continuing to fall out with the FOLFOX treatments, but I haven't taken the next steps yet. The general advice is that I should cut it short first -- both to make it look thicker and to ease the psychological mayhem of seeing all these long strands of hair everywhere -- then see if it keeps falling out, and shave it if it does.

Mentally this sounds like a perfectly good plan. I still haven't taken that first step. Part of it is that the last time I had short hair was.... uh.... first grade. Chopping it off is a big step. But most of it is that I keep running into artistic projects or blogs or forums where you see the progression of someone's cancer go from full head of hair to chemo-haircut to bald head to... hearing about how they had a recurrence and went on to die.

I know it's crazy to think that way. Nothing I do cosmetically will change the fact that I have good survival odds.  If I think of head-shaving as a temporary thing, it's fine. I have friends who went through chemo, wore wigs, and now have beautiful heads of hair once more. But it's hard to shake that fear that this will be the first step toward never looking like myself again, that at the end of chemo we will see a recurrence before my hair grows back, and then the children will never see me looking like a "healthy" mom. And yet, when one kind friend suggested this pre-hair-chop period was the time I should be making them videos and pictures with us together and me looking "normal," just in case... ugh. No way could I make it through a video thinking that I was making a just-maybe-posthumous gift for little ones who would long since have forgotten what I looked like. Holy swear words.

So for now, I'm waiting to see if round 5 causes as much hair loss as 2, 3, and 4 did. I think I have another round or two of this before it gets to the point where strangers would think I looked weird. If I've got that time I'm going to take it.

Chemo drug shortage

I learned during my round of chemo today that, due to a national shortage of leucovorin, I wouldn't be getting any this week (and who knows if ever again). My wonderful oncologist did a pretty good job of convincing me that this would not have a serious effect on my survival and life expectancy... but he also acknowledged that it's in the protocol for a reason, and that if he had it, he would want me to be taking it. The more frightening side of it, for me, is that there could be shortages just as easily of the other medications, the ones where it would seriously cut my survival odds.

I wrote my Congresswoman when I first started looking at oncologists and heard of these crazy widespread drug shortages, which appear to be caused by the bizarre way the U.S. funds medical care. (There's no shortage in Asia, Europe, or Canada.) That first oncologist told me my first priority in choosing a place for chemo should be whether they could guarantee me a six-month supply of the recommended regimen. In my political letter (one of the first I've ever written), I asked what the heck was going on. Here, in a first-world country, people are dying because factories aren't bothering to make the drugs that they need to live? Is there no role for the government here? Weren't politicians yammering about invented "death panels" during the health care law debates? Seems to me that letting people die because there isn't enough profit in making their drugs is pretty death-panel-y all on its own already; why aren't there big yelling fights about the un-American nature of that?

I'm so bothered that politics and money are keeping me from a medication that I am supposed to be taking to help save my life.

What Is In Control Of My Body?

After three chemo rounds, I still know I should feel glad that the side effects aren't worse than they are. They're a constant litany of whining -- fatigue, controllable nausea, crab-claw hands, bloody nose, insomnia, ground-glass feeling drinking cold things, prickling hands and feet, and so on, and so on -- but none of them have been horrible. But I am struck by how much I've been relying on medication to make my body work properly. If I don't take the Zofran on days 3-7, depending, I will feel sick. I might still feel sick, in which case I add the Compazine. Eating almost anything the "on" chemo week means relying on Reglan to get it out of my stomach. Most of the nausea drugs cause constipation, for which there are stool softeners, but the diahrrea seems to be reliably coming around days 7-9, so there is the immodium. The nurse practitioner thought the crab claw hands might be from an electrolyte imbalance, so on come the Tums and Gatorade. Insomnia while being so tired is maddening, and for that there is Ativan (also helpful with the nausea). It's like my body can't do what it's supposed to do on its own any more. I hope it remembers how to function properly once the biggest drugs of all -- the chemo ones -- are gone.

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.