Off to poison party no. 5

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.

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About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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10 Responses to Off to poison party no. 5

  1. beth says:

    Hang in there Heather – I’m thinking about you!

  2. Peg Wittrock says:

    You’ve lots of people pulling for you…..I’m on the list. Hang in, hang on – I know you will.

  3. Colleen says:

    For mouth sores I highly recommend Caphosol.
    http://www.caphosol.com/

  4. Heather,

    That was about the best and most powerful description of cold sores I’ve ever read. You make me so grateful for the simple fact that I don’t have cold sores.

    Your posts are amazing and life enhancing. Hang in there. You are an amazing writer and woman, and have touched the lives of so many.

  5. Christina says:

    Hi Heather. I found your blog while doing research for one of my close friends who was just diagnosed in October (how ironic that she was diagnosed during Breast Cancer Awareness Month, but I digress). Your words echo the same struggles she has been going through, and it brings tears to my eyes to read it here, but I feel like it’s helped answer some questions and concerns that I have but don’t want to actually ask my friend about. I just read the NY Times article you linked to. Ugh. So scary.

    • leftbreast says:

      Christina – So glad my experience helps. Everyone is different, but I think the best thing you can do for your friend is just be there. It’s a cliche, yes, but a true cliche. Good luck to both of you.

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