From awareness to action, from ribbons to research

It’s time, I think, to move from awareness to action, from ribbons to research, and to share what we’re learning with the rest of the world.  The #cancerrebels and pink protesters I’ve linked to in the past and new blogs I find every day are standing up for what we believe in, and I’d like to ask you to stand with us.

I’ve heard you asking why the research allocations are so off (30% of breast cancer cases progress to metastatic breast cancer, which only receives 3% of the research funds in the U.S.), and how we let it get this way.  No one knows for sure, of course, but I’m convinced that a big part of it is that it’s easy to overlook metastatic breast cancer survivors.

Even the name is a misnomer.  No one actually survives metastatic breast cancer.  Every single one of us with metastatic breast cancer will die of metastatic breast cancer, unless we’re hit by a car (or some other such accident) on the way to chemo (for example).  Many of us are not as active as we used to be; we suffer from pain, aches, nausea and fatigue, and we spend our “free time” at treatment or sleeping it off.  We prioritize our time with friends, but still we may retreat from social situations since we tire easily and unpredictably.  We spend our time with our families, squeezing out one more good memory, one more moment of happiness with our children, our spouse, our partner.  Many of us are additionally exhausted from treatment combined with work, by choice or by necessity, especially for the large number of us who must work to maintain access to our health insurance, a terrible twist for those without partners with health insurance or another solution.  Many are also caregivers for parents, teens, or very young children, and the time for advocacy slips through our fingers.

But most of all, the metastatic cancer movement has been stimeyed by the truth:  most patients diagnosed first with metastatic breast cancer die within 3 years, a number that has not changed in the last 20 years.  The 30% who have another cancer first that progresses to metastatic cancer may live longer (or shorter), but they are weary from the fight, and many have not felt welcome in the “pink” communities that shout HOPE from the rooftops.

Hope is lovely, of course, but in breast cancer circles, hope seems to mean hope for a cure (which is not likely to come for metastatic patients without more research) or hope that the cancer does not return — making the individual then a patient with metastatic breast cancer — this disease that has no cure and is always fatal.

It is hard to volunteer tirelessly for an organization that preaches HOPE that its members not become like you.

But today I want to introduce to you 1) the National Breast Cancer Coalition, the organization of organizations that helped teach the #cancerrebels these facts earlier this year, 2) Metastatic Breast Cancer Network, which is holding its FREE  annual meeting on “Empowerment through Education” TOMORROW in Baltimore (it may not be too late to attend!), and 3) METAvivors, a grass-roots group that has formed around the need for ACTION.  Now.

The METAvivors are a group of women from Annapolis working to create change, to increase not just awareness but research.  The group helps groups across the U.S. form their own local support groups for metastatic breast cancer survivors, spreads awareness of facts such as the ones I discussed above, and has recently formed their own nonprofit foundation to support a level of research commensurate with the number of patients that are diagnosed each year with metastatic breast cancer.  Starting in 2010, the METAvivors now fund promising metastatic research grants out of donations alone.  They are staffed by volunteers and support designation of donations for research — include that word on your check or with your donation and 100% of the funds received will be distributed to the competitively selected research grants.

On October 11, METAvivors.org announced their 30% for 30% campaign to ensure that research and support for metastatic breast cancer are commensurate with the prevalence of disease.  I’m eagerly awaiting new details, but this is an organization I can really get behind.

Big day today

Today, I have my last pallative radiation treatment, firing ions at my “sit” bones to kill the cancer cells lumped up together there so I can sit at the computer again and type.

Today, I meet with my radiation oncologist to see if we can repeat those treatments on my ribs, so I can sleep on either side at night, or get a nerve block to treat the spot just next to my spinal cord, if that’s causing referred pain in my ribs instead.

Today, I meet with my medical oncologist to choose the next chemotherapy (1 down, 3 unavailable, 16 to go).

Today, I am grateful for all the women who have helped me in just the last two weeks, by pushing my wheelchair so I could attend Blogalicious Weekend, for driving me to treatment each morning, for calling and checking in to lift my spirits, and for cooking my family dinner so that I could spend the afterschool time, when I am finally awake again after treatment, helping my oldest with his homework and playing matchbox cars with my little one, giggling with them both over funny stories in the books they got this week from Scholastic, and being their Mom.

I am grateful for my parents who are living with us on treatment days and most of all for my husband, who has to go through all of this awfulness with me, as my partner, the love of my life, so that it is not cut too short too soon.

And so much more.  But I will end this here, as it’s time to leave, and today is a big day in my treatment.

Blogalicious, baby!

I’ve been looking forward to Blogalicious, the annual conference celebrating the diversity of women in social media, for months. This weekend, it finally arrived, and my husband whisked me from radiation treatment to the conference across town, arriving just in time to plot and plan the next event with American Cancer Society representatives.

Friends @Teachmama Amy and @Techsavvymama Leticia met me at the door with a wheelchair, freshly borrowed so we could navigate the huge conference center in comfort. I gratefully accepted, fighting off nausea and dabbing on makeup, and we headed over to the meeting in style.

When it was our turn, shortly after @TedRubin tried to lead the conference attendees to lunch smiling and skipping, Angela, the American Cancer Society representative, talked about the more birthdays initiative and introduced me to “tell my story”. My (personal) goal was to celebrate the work and research that had brought us this far, to teach why more research is necessary, and to ask for more research on metastatic disease. This is what I said:

I am alive today because of research funded by organizations like the American Cancer Society and the federal government.

I was diagnosed with inflammatory breast cancer in June 2007. I had a year of chemotherapy, surgery, and radiation, all developed by really smart researchers funded through the efforts of men and women like you. The treatments worked, and I have *lived* for 4.5 years while my babies grew up and went to school. I am grateful, so grateful, for that.

But the cancer came back. Now, like 150,000 other women and men in America, I am living with metastatic disease. Metastatic breast cancer, as some of you know all too well, is when the cancer moves away from the breast and recurs in the lungs, the liver, and other vital organs.

Now, I’m going to let you in on a dirty little secret: No one dies of breast cancer confined to their breast. Some of us die from treatment, but most of us die when the cancer has moved to our vital organs and shut them down. We die of metastatic disease. There are treatments we can try, but there is no cure.

When I was diagnosed with metastatic breast cancer this year, I was reassured that there were 20 chemotherapy drugs that we could try. We tried one. It worked, for a while. Then it stopped working. Three of the 20 drugs are in short supply right now, so I can’t have those. There are sixteen drugs left.

I will be on chemotherapy once a week, for the rest of my life. That is, until we’re out of drugs that work. That is why I believe we need more research. All of us with metastatic disease — and the 30% of women whose breast cancer will spread and become metastatic — will die without more research.

Oh, and — Research on metastatic disease is woefully underfunded, at just 3% of all breast cancer research.

Fight with me.

As I fight for my life each day at radiation or each week at chemo, join me and the American Cancer Society as we fight for more birthdays.

… After I spoke, Angela shared her testimony and encouraged everyone to sign up at cancer.org for more information about what they can do in the fight against cancer. The lights were dimmed and the two hundred bloggers in attendance lit candles perched on mini cupcakes and sang “happy birthday” in honor of the people in our lives who have celebrated more birthdays, thanks to cancer research and the treatment it enables.

Rock on, ACS, and rock on bloggers with heart. I hope you help us share the message that there is still work to be done, and we need to do the research on metastatic disease if there is to be hope for a cure.

Every moment a memory

Without going too Hallmark-y on you, I just want to take a deep breath and share how wonderful life can be, even in the midst of all that cancer I talked about in my last post.  During difficult times, I’ve had to face the fact that I may not have many years left (oh, how much more positive that wording is now than when I was writing in all that pain!), and so every moment, every milestone that I get to reach with my children is that much sweeter.

Last week, my oldest came up with the idea for his Halloween costume, his first year requesting something himself:  a tornado.  We talked and sketched, measured and thought, and we designed him a tornado costume, complete with minature slinkys and farm animals that would spin around when he did.  I sent my guys to Target for a gray shirt and a little miscelleny, and when they came home, the seven-year-old collapsed with happiness, saying, “Mama, I cannot WAIT to be a mummy for Halloween!”  (Wait, what?)  So we spent Saturday afternoon together dying an old sheet with tea, tearing up the strips, and talking about the ancient Egyptians and their burial practices (fun fact: they pulled the deceased’s brain out their NOSE).  He dressed as a mummy for a friend’s costume party at the park on Sunday, and hilarity ensued.  (I was THERE.  For three hours, I was THERE.  It was an amazingly beautiful, clear day,  spent with sixteen small boys and their families, and I walked around and chatted with the best of them.  And then, I slept until Wednesday.)

My littlest woke up this morning at 4:00, wandered into my room, and cuddled up against me, saying drowsily, “I love you, Mama.”

And last weekend, the boys came tearing up the steps together, asking excitedly, “Mama, do you want us to get out the hammock so you can rest?”  I smiled as I got out of bed and transferred my tired tush to the hammock outside, where they promptly jumped in with me and made it a sailing ship, a pirate vessel, and then part of the Rebel Alliance.  It was a good deal rockier than my bed upstairs, but oh, so much happiness was had.

This, this is why I am thankful for treatment and the ten amazing women taking me to radiation therapy each morning this week and next.  Thank you for reading, particularly new readers coming here after the articles in USA Today and The Huffington Post this week.  Grab a chair.  Or a stack of pillows.  We’re pretty casual here on Toddler Planet.