Change in plans

the oncologist agreed. we can stop the chemo. the balance of possible eradication of stray cancer cells versus quality of life has tipped severely now, and she agrees that it’s not worth it.

There are no studies, anyway, that show that 6 cycles (18 weeks) of Xeloda post-surgery and radiation are more effective than 4 (12 weeks), or even what the suggested treatment regime should be. We struggled with this in March, again in August, and once again today. This treatment was all a best effort kind of thing, a hope that after the surgery removed the thirteen swollen cancerous nodes that the chemo would scrub my blood and organs clean, killing the escaped cancerous cells before they could swarm and divide and form new tumors. This was our best effort (particularly since the other drug, Avastin, failed to win FDA approval in September), and we have given it our best shot. No, more than that. We have completed 5 cycles (15 weeks) of ups and downs, ins and outs, nausea, vomiting, stomach cramping, throat sores, fatigue, napping, exhaustion, foot sores, tenderness, and peeling, slippered preschool pickup, isolation, loneliness, chocolate cravings (week 3), loss of appetite (week 2), inability to eat meat, warm food, shredded wheat or crackers (all weeks), constipation (week 1), diarrhea (week 3), and a general occasional bitchiness that I blame on the fatigue and pain.

Oh yeah, the pain. Somewhere last week I twisted my upper back again and today was simply impossible. After trying to sleep the pain off yesterday, I woke today in so much hurt that I couldn’t concentrate on a short talk with my husband. I broke down and admitted the pain, high in my spine, that I had been trying to hide, and he helped me call the doctor and choose a pain pill, and then he tucked me into bed with a cold pack. I was no better hours later, crying that I couldn’t see through the pain, and we upped my dose and made a plan to talk to the oncologist about it today.

Long story short, the resident ran some neuro tests, we talked about my history, and he and my oncologist recommended that we stop the chemo and give my body a chance to heal. It’s been under a lot of physical stress this year (9 months since the tremors that signaled a change), and it needs a break before we can start the endocrine therapy again.

Her directions were: Stop the chemo. Rest. Relax. De-stress. Give yourself a break. After the holidays, we’ll focus on eating right, beginning again to exercise, and start the Aromasin again, to deprive any remaining cells of the estrogen they feed on. But for now, de-stress. Give your body a chance to recover, so it can withstand the Aromasin again and start to exercise and grow strong again soon.

Those were the words she said, but all I could hear was their impact: I can spend Christmas with my boys, and hopefully have enough strength to celebrate.

Hallelujah.

I celebrated with the last of the cupcakes and tucked myself back into bed when we got home.

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Chemo 2010: Day 1

Last night, we cleaned up the supper dishes, took the towels out of the dryer, and helped the children with their showers. Then we all put on pjs, climbed into the big bed to watch cartoons together, and I took my first three chemotherapy pills. My husband put his arm around me and said, “Thank you. Thank you for doing this for our family.”

and we all snuggled, watching Tom and Jerry discover silly green aliens on Mars while we waited for my body to react to the chemo pills.

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This morning’s routine was not nearly as much of a ritual, squeezed in between showers and timed after breakfast and before we got distracted by the children’s needs.

So far, so good. I’m not reacting violently to the xeloda, which is fantastic. My oncologist says that we’ll know how I respond after a week, in terms of side effects, and after three weeks, in terms of white blood counts (that fight infection) and liver counts (which can be damaged by the treatment). So today I rest, and watch, and pick blackberries from the garden with the children.

My body now has the tools to fight the cancer.

Six pills down, 498 to go.

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(I promise not to blog every pill. This is just new to me, and I want to remember how it all started. Thanks for bearing with me, and for your lovely comments. I try to comment back and visit your blog in return, but if it takes a few days, please forgive me!)

Guest post

I’m over at Workout Mommy’s place today — if you’d like a guest post on IBC for your blog, drop me a line and I’ll write one just for you too (or you can cut-and-paste the one below.  It’s yours, no problem, just please link back to me and let me know you did).  It’s still important to get the word out — as much as I’d like to move on and forget about it, it’s not like people have STOPPED getting IBC since I finished my treatment.  In fact, an estimated 25,000 women have been diagnosed with IBC since I was diagnosed in June 2007, and many have died because they weren’t diagnosed before it had spread too far.  Let’s keep spreading the word — there’s more than one kind of breast cancer, and inflammatory breast cancer is the cancer without a lump.

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Inflammatory breast cancer

There’s more than one kind of breast cancer.  Did you know that?  During October, we’re so often flooded with “buy pink” campaigns, and reminders to check ourselves for lumps, that it’s become almost commonplace.  We all know that we should do regular self exams, and we’ve heard it so often that the urgency often fades into the background of children, spouses, laundry, and work.  But did you know that there’s a kind of breast cancer that forms without a tell-tale lump?

It’s called inflammatory breast cancer, and it spreads FAST.  The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

There’s a great illustration of these symptoms over at Worldwide Breast Cancer that is guaranteed to be not like anything you’ve seen before….

In my mind, it boils down to this. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

In the 2.5 years since my diagnosis, I’ve already lost a dozen friends to cancer.  Many of them were moms and bloggers, readers just like you.  They fought hard.  They fought with everything they had.  But cancer treatment is largely still in the experimental stages, and it’s a tough road.  Just to be here today, I had to not only survive cancer, but also survive 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat when I step outside (as a lovely side effect of the mastectomy that took all my lymph nodes on that side). It’s been a hard, hard road, but I’m grateful for the chance to be here today, to hug my children, to play their games, to laugh at their knock-knock jokes.

There is joy after cancer.  But first we have to get there.  So please, take a moment, call/email/blog/tweet/update your friends, and SHARE the SIGNS of inflammatory breast cancer with the people you care about. You never know. You might just save a life.

Letter to friends I haven’t yet met

Dear Little Rock Mamas,

I’ve just finished reading about your Race for the Cure team that is preparing for the big race on Saturday. It sounds like there are a lot of fun events going on, and I’m looking forward to reading more posts about it on your blog. Race for the Cure is a great event to raise money and awareness of breast cancer, and that’s so important, as early detection is the key to catching this “beast cancer” before it develops into a monster that overpowers even the most technically advanced chemotherapy, radiation, and surgical treatments.

You guys know how to detect most kinds of breast cancer, right? With regular self-exams, looking for a lump? Of course you do, and I know you’re reminding your readers too. But as it turns out, there’s another kind of breast cancer lurking out there, that is far more sneaky, and far more deadly. It’s called inflammatory breast cancer, and it forms inside your breast without a lump. That’s right. There is no lump. The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

And here’s my own pitch. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

I’ve already lost too many friends to this disease, bloggers and readers just like you. Won’t you please check yourself for these symptoms, print a copy and file it away for later, and SHARE IT with your friends? Need a visual? Worldwide Breast Cancer has some really cool posters (also on flicker) that illustrate visual signs of breast cancer … using fruit instead of the human body!

I learned about inflammatory breast cancer very accidentally, when researching my mother-in-law’s breast cancer diagnosis. There was a link at the bottom of the page, and, curious, I clicked it. As I read through the symptoms, I had the strangest feeling, scoffing, well, I have that. And I have that. Hmmm, I have that too. And, when I called my doctor, and went in the next day, it turned out that I needed to see a specialist to rule out IBC. She wasn’t able to rule it out, however, since the biopsies showed that I indeed did have IBC — the deadliest form of breast cancer.

Two years later, I’ve survived cancer, 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat as a side effect of the mastectomy that took all my lymph nodes. It’s been a hard, hard road. But I haven’t done it alone. I blogged my way through this disease, and was very much supported by my friends online and off, as well as my family, which really rallied to come and care for me and my children. I’ve survived cancer.

The last two years have been in some ways terrible and in some ways absolutely wonderful. The terrible part is detailed on my blog, a daily history of what it’s like to go through a cancer diagnosis and treatment … and come out the other side. The wonderful part is there too, magical days with my children, weekly playdates with their friends and my mom-friends, getting back to normal with things like book club and volunteering and the kids’ school, and dancing with my husband in the chemo ward, in the rain, and in the kitchen. I’ve celebrated birthdays — of me, my children, and my children’s friends, and I intend to celebrate many more birthdays to come.

There is joy after cancer. But the important part is getting there — the after cancer part. So good luck this weekend, walk hard, and SHARE the SIGNS of inflammatory breast cancer with the people you meet. You never know. You might just save a life.