I’ve been going through a “OK, this is enough, I’m tired of being tough and brave and all that” period. Perhaps that’s why I haven’t posted much in the last week. I saw The New York Times piece about women with metastatic breast cancer, women who are fighting for time rather than a cure, women for whom treatment will not end. We need to talk a lot more about these women. They remind us that breast cancer isn’t pink ribbon cute (alas, the Times headline had to invoke pink). It’s a disease that kills.
But lately, I don’t have the mental or physical strength to write a real post about that Times story, nor about chemo regimens, nor about mouth sores, nor about watching my daughter’s first trampoline class, remembering high school gymnastics team and wondering if my body will ever again be strong enough to do even a couple of the things I watch the gymnasts do, nor a dozen other things that have flitted into my mind, and then out again.
The time between infusion 4 and infusion 5 has been the most difficult so far. They told me it was going to be that way, but the reality is more difficult than the warning. After the first three infusions, I suffered through a week or so of being sick so that I could have two weeks of being pretty OK.
This time, I think I enjoyed about four days of wellness. First there was nausea and constipation, then diarrhea and crushing fatigue, then excruciating muscle pain for a week, then more fatigue, red circles around the eyes that won’t go away no matter what moisturizer is slathered upon them, mouth sores, the resurgence of muscle pain.
I didn’t write the post about mouth sores, but they are the most difficult thing so far. Imagine several giant cold sores, some the size of a dime, some the size of a quarter. I do not have the worst case, far from it. Some people get these sores on their tongue so that their tongue feels like it’s burning. Others have them in their throat. Some are so bad that the patient must be hospitalized because the sores make eating impossible.
I am nowhere near that state, but it is bad enough. One sore sets up shop on the inside of my lower lip. It hurts when I eat, but worse, it hurts when I talk. Not eating is bad, but not talking … that’s intolerable. I have a quarter-size sore inside my right cheek, another one under my tongue, another at the top of my throat. You don’t realize this when you’re well, but your mouth is always moving. So the sores never stop hurting. It’s truly miserable.
Luckily, Jeanine, the great UC nurse practitioner, has a great routine for mouth sores, one she hit upon when working with bone marrow transplant patients who get vicious mouth sores. It involves brushing, flossing, gargling with baking soda, dabbing Lidacaine gel on the sores, then a steroid gel on each sore, holding your mouth open in such a way that the gel can dry over each sore, being glad no one is there to point out that the gel makes you drool. It’s your kid’s dream: Mom’s making funny faces in the mirror! It’s your dentist’s dream: You make mouth hygiene your career.
But as I write this, the sores have almost shrunk away and they don’t hurt any longer. So I guess I’m ready to go in for another poison party. The nurses and the docs say that this one, number five, will be the toughest. My body’s getting tired, and I know there will another one after this, so no boost from being finished. Number five, it’s like being three-quarters of the way through a cross-country foot race: Let’s just get through it.