Monday, April 6, 2015

Don't Ignore Stage Four

As I do two out of every three Mondays, after dropping Quinn off at preschool this morning, I headed to my oncologist's office. I had chemo last Monday, so today I was due for lab work. The office is on the other side of town, about a half hour drive from our house even when there's no traffic. More and more, I find myself getting irritated that I still have to check in so often, even after nearly two years on this drug and mostly great blood work (even if I did just have a bloody nose, which are fairly common in my post-chemo-chemo world.)

It's a small thing, this having to check in and have blood drawn from my port every third Monday. Chemo is less of a small thing, but I can justify those visits. The drive is worth it because I'll be there for two to three hours. Plus, chemo is working. I can visit with a friend or catch up on my emails. Labs, on the other hand, take only ten or fifteen minutes, but I still spend an hour in the car.

And yet -- it is such a minor complaint in the grand scheme. Other women in my circle spent the holiday weekend having seizures or being hospitalized from complications of metastatic breast cancer. I have no right to feel irritated about an hour in the car for blood work.

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Today is the first Monday of the month, and there is a movement afoot to spread the word about what it means to live with metastatic breast cancer (MBC). And eventually, we hope, to get more research funding aimed at halting this disease. In my life, right now, living with MBC means feeling cruddy every third week while I recover from chemo. It means a lot of driving to and from the oncology center for labs and check-ups. It means bloody noses about once a week. And it still means scans every 3-4 months. But all of that is mostly manageable. (After all, I have good people around me to help.)

For many people with this disease, side effects and treatments and the cancer itself take a much harsher toll. And after everything we go through to extend our lives, only 1 in 5 of us will live five years after our initial Stage 4 diagnosis. It is such a harsh statistic that the American Cancer Society warns readers to skip ahead to the next page if they'd rather not see the statistics that they put in a chart much further down the webpage.

Despite these odds, I think I've made it abundantly clear that I find so many reasons to have hope. Hope I will be one who makes it way, way, way past the five-year mark. Hope that more and more people with MBC will start having outcomes more like mine, and that doctors start calling this a chronic rather than terminal illness. Hope that the next generation of women won't have to worry about breast cancer at all. Wouldn't that be nice?

If you want to help advance this cause, please consider writing your representatives in Congress, donating to groups like Metavivor (which only funds Stage 4 research), and spreading the word that there is more to breast cancer than early detection.


  1. Hi! I just found your blog from Rage Against the Minivan. I just lost my mom in January to breast cancer. She was 67. She had lived with it for 15 years and treated it much as you described here, as a chronic condition. She went into remission after the first round of surgery and chemo, but her body built up a resistance to Tamoxifen. She had good years and bad years. Saw my brother and I get married and have our sons. Traveled to Europe, Australia and New Zealand. Met a man who stuck by her until the end.

    I have a 2.5 year old son and I definitely live in fear that the big C is coming for me. I have a terrible family history of cancer, in general, and then my mom and a great aunt with breast cancer. Because insurance companies now want even those with a family history to wait until 40 to have yearly mammograms, I think I'm going to start paying the $500 out of pocket when the mobile mammogram truck comes to work every October.

    Anyway...sorry to ramble. I just wanted to let you know I enjoyed your guest post today.

    1. Hi Carolyn, thank you for reading and sharing your story. I just read your blog post about your mom. I'm so sorry for your loss, but want you to know: you were absolutely enough. You clearly loved her, and she would have known that. Mothers just do. It's in our DNA. As much as you love your son, she loved you, times 34 years.

      I also wanted to say, given your family history of cancer, your insurance may approve genetic testing and/or earlier mammograms. It really depends on the insurance but it may be worth asking. I will say, though, that self exams are how most women I know found their cancers. I hope you live a long cancer-free life. You've had enough heartbreak already.

  2. Pardon my language, but FUCK THE STATS. You will do this. You ARE doing this.

    1. I adore you, Tim. Thank you for your unwavering support, always.

  3. Pardon my language, but FUCK THE STATS. You will do this. You ARE doing this.