Fighting a Smarter War Against Cancer: A Symposium

November 26, 2011

Lombardi ConferenceIf you live in the Washington, D.C., area and are interested in national health care issues, from health care reform to navigating cancer care: what every patient needs to know, please consider attending the FREE symposium next week at Georgetown Lombardi Comprehensive Cancer Center: “Fighting a Smarter War Against Cancer: Linking Policy to the Patient.”  It’s a great lineup, and the speakers are top-notch, from Senators, to Law professors to pharmaceutical companies, researchers, doctors, nurses, and pallative care.

Check the schedule, and see if you can attend all or part of this amazing opportunity at Georgetown.  And please – spread the word!

The days pass by (by Susan)

August 17, 2011

The days pass by in a slow not-quite-rhythm as we learn to adjust to this, yet another “new normal” of cancer and chemo and pain and weakness and pills and side effects and always, always fatigue.

Close friends have begun to stop by with their children for a playdate in the late morning, spreading into lunch, and then the children are tired but I am more so, and we all lie down for a nap or at least a few episodes of Phineas and Ferb. They arise and play in their playroom, but I am lost in slumber, waking only at Daddy’s gentle nudge for dinner, or, worse, late in the evening, when the house is silent and I am still tired, but not sleeping between the hours of 3 and 6.

The meds relieve my pain but also take away my energy, and I am so tired that the days pass one into another without my noticing. Work is slow but doable, I parent the best I can, with all my energy until just after lunch, when if I have family here, I nap, to awaken hours and hours later.

The heat is oppressive, and we live indoors this summer, as when I go outside my arms swell up, even in my lymphedema sleeves, and my belly bloats as well. And I get crabby. So that’s not a solution, and won’t be until we have a handle on the meds a little better and I can drive again (trying not to on the opiates), and the breakthrough pain is less and less, so I won’t get stuck somewhere in pain and we somehow find my energy again, so I can walk around at our destination.

I don’t mean to paint a bleak picture. I am as always thrilled to be alive, but it is a quiet existence, and the side effects are more than side effects, and I am so very tired of sleeping so much. I’m fighting so hard — we’re all fighting so hard — to keep me alive, that it seems that I should be able to do more than play quietly with the children in the morning, keep up with the most basic chores, and write two days a week when everything magically balances.

Friends are a wonderful blessing, bringing meal after meal and thoughtful things to keep the children distracted, or games that we can enjoy together from my couch or bed. I don’t have the energy to say yes to all of them (how blessed we are!) but when I can, it is lovely, and the love — from spouse, from family, from friends, from those two perfect boys we call our own — keeps me going.

The love keeps me going, and I remember what a gift each day is, as I take the rare step outside and catch a glimpse of the butterflies we raised this spring — or their grandchildren — or the gravel pit Grandpa made just for us — or the azaleas, the playset, the shovels, the toys, the detrius of a live well-lived. And I take a deep breath, remembering to enjoy it. Remembering that life is made of moments, and I am so lucky that I get to live such wonderful, wonderful moments all smooshed up together in this beautiful life that exists between the sleeps.

Originally posted at Toddler Planet.

Changing the Conversation: NBBC’s new approach

May 3, 2011

Deadline 2020After a weekend workshop with 800 energetic, amazing, committed women (including 8+ incredible bloggers and 30+ metastatic women fired up to fight for the END of breast cancer), I have new energy and new spirit and new FIGHT in me, both against this horrible disease in my own body and against its formation of tumors and spread in bodies (called metastasis) in general.  There are some exciting ventures afoot, and 800 fired-up women canvassing the Hill today, talking to their Senators, Representatives, and the Legislative Assistants (LAs) that make things happenon Capitol Hill. 

There is hope – but there is more than hope – there is now a DEADLINE and a plan for the END of breast cancer tumor formation and metastasis: January 1, 2020.  Ridiculous? Perhaps.  Daring? Definitely.  More details will be coming, interspersed here with my usual stories of motherhood and science and friendship, and I’ll be introducing you to some amazing women, my fellow #cancerrebel warriors who STAND UP and FIGHT BACK and will not be comforted by pretty colors or hope.  We need more than ribbons, my friends.  We need RESEARCH that will bring about BIG change, more than incremental changes and improvements in the drugs that poision us (but poision the cancer just a little bit faster).  I love my chemo, don’t get me wrong, but wouldn’t it be great if we could SUPPRESS the tumor cells into dormancy or make the surrounding tissue UNWELCOMING so that they would move on, and “leave the neighborhood” entirely?  There is promising research, and it is exciting.  I can tell you more about that in the coming weeks if you like, but today I want to echo four statements from the conference speakers (with citations), and I hope you can hear the urgency through your computer screen or smartphone:

1. More than 500,000 women still die of breast cancer each year.  “The five-year survival rate for women diagnosed with localized breast cancer is 88-93%; the five-year survival rate for women diagnosed with metastasized breast cancer is just 15%.”   Fran Visco, NBBC President; the NBBC Baseline Status Report states that the first statistic is 98%, citing Welch et al JAMA 283(22): 2975-2978.  We hear all the time about survival rates improving – but for those of us with metastasis, there is a long way to go.

2. “Over 30% of women initially diagnosed with earlier stages of breast cancer will develop metastasis” — and no one knows which ones. – Musa Mayer, survivor and advocate, citing O’Shaughenssy, Oncologist 10: 20-29, 2009.  If new research can prevent secondary metastasis, women with primary tumors can live longer and healthier.

3. “Age-adjusted cancer mortality has not changed significantly in the last 60 years: it has decreased just 5%, while heart disease decreased 65% in the time period 1950-2005,” – Sharon Begley, journalist.  We can do better.

4. “Only 5% of cancer research funds are spent on metastasis, yet it kills 90% of all cancer patients.” – Patricia Steeg, researcher, in Sleeman and Steeg, EurJCancer 46:1177, 2010; Science Daily 1 June 2010. 

Can we cure cancer? Gosh, I hope so.  Can we prevent tumors from forming and metastasis from spreading?  We must.

For more of the conversation, follow these #cancerrebel bloggers and warriors: Elizabeth@ccchronicles, @pinkribbonblues, @kathikolb, @uneasypink@jodyms, @chemobabe@yscbuzz  – and learn more about #deadline2020.  If you’d like to hear more about the plan for Deadline 2020, new theories on metastasis, tidbits about cancer treatments 4000 years ago, what dormant tumor cells are, why Dr. Susan Love calls lifesaving surgery/radiation/chemo treatments slash/burn/poison, or how physicists are taking a new look at cancer cells, why, just ask and I’ll happily share with you what I learn.

Metastasis … and a second clinical trial

April 18, 2011

Two things. 

1.  The cancer has spread to my bones.  This is called bone metastasis, and it’s not a particularly good sign.

2.  The cancer in the lymph nodes in my chest now shows “near-complete resolution” with “minimal hypermetabolic activity.”  This is GREAT NEWS and as far as I’m concerned, it’s at least a minor miracle.  Not to use the word lightly around my friends the nuns or anything, but really?  Near complete resolution?  Awesome.

We just have to work on the cancer in my bones now, adding Zometa infusions once every four or twelve weeks to strengthen the bones and (hopefully) slow the cancer’s growth as the Femara continues to block the estrogen that feeds it.  I say once every four OR twelve weeks because we don’t know yet.  I’ve agreed to join another clinical trial and recieve whichever treatment the randomizer assigns me to receive. 

As you guys know, experimental research is important.  Just because the last clinical trial was so hard on me doesn’t mean this one will be – and every little piece of knowledge helps the researchers plan treatment not only for me but for the women and men who come after me.  Bone mets happen to 70% of breast cancer patients, they say, and we need to find ways to control their growth until they can be stopped.  So I’m off to start another clinical trial.  I had my first infusion on Thursday, with side effects (fever, aches, pains, flu-like symptoms), this weekend.  I’m hopeful that this treatment will work too.

Good luck, Mayor!

March 24, 2011

Mayor O. BreastcancerToday’s a big day for a woman who has been a longtime supporter of Mothers With Cancer, in this group and worldwide.  Please join me in wishing “the Mayor” GOOD LUCK and ROCKIN’ WORDS in her Ph.D. thesis defense TODAY! 

The Mayor was an early supporter and designed our logo back in March of 2007 when we were just getting started, and she is the force behind Worldwide Breast Cancer, a breast cancer education site that uses lemons to illustrate possible signs and symptoms, and to encourage women to check themselves early and often for anything that seems odd.  I adore her, and I wish her ALL THE BEST today! 

Goooo, Mayor!

Neutropenia and motherhood

February 23, 2011

Neutropenia is a common but yucky side effect that affects about half of cancer patients on chemotherapy or treatment with a biological agent (like Nexavar).  When a cancer patient is neutropenic, it means that her white blood cell count is low and she is much more suceptible to infection.  She is given direction to avoid possible sources of infection, to stay away from crowds, to wash hands and insist that others wash hands before coming into contact with her, and to change her diet to avoid the risk of infection from food. 

All foods must be freshly cooked.  None can come from restaurants or uncontrolled sources.  Bread must be bagged and not homemade.  Cutting boards must be changed between preparation of meats and other foods.  No deli meat.  No deli cheese.  No hand-packed or soft ice cream or froyo.  No soft cheese.  No popcorn.  Nothing from a bakery.  No raw veggies, fresh fruits, except those with a very thick skin (oranges and bananas), or dried fruits.  No spices, salad bars, buffets, or restaurants.

I’m pretty sure the guidelines would say no contact with little children who bring home infections from preschool, but what can I do?  I have two who need me, and one is home sick today.

Originally posted at Toddler Planet, February 22, 2011

The kids

February 23, 2011

I worry about my kids.  I worry a LOT about my kids.  How are they making it through this crazy time?  How do they deal with hearing my name listed among the sick that we pray for at church every Sunday?  How do they feel when they hear me say, “No, honey, Mama can’t” wrestle or swordfight or take them for a walk? 

Are they ok?

Are they going to be ok when they’re teenagers, or all grown up?  Will this time be a defining moment for them, something to point to in future therapy sessions?  Will they be ok?

But yesterday, my oldest brought home a drawing from school that made my heart sing.  They drew pictures of snow globes, and, out of anything in the world, he chose to draw himself playing with two friends.  He drew friends.

He didn’t draw the dark scary place that I was in.  He drew the happy, kid place that he was in.

And he’s going to be ok.

Today, he came home with simple homework:  write three words that describe who you are.  We waited to hear what words he’d choose, and, after his bath tonight, he told us:

Happy.  Nice.  and then he asked his Dad what word he’d use to describe him, curious what he would say.  Dad said, “curious.”  Widget smiled, and there the words were, all out in the open.  WhyMommy’s oldest boy had fulfilled her deepest hopes, all at the age of 6.  He is happy.  He is nice to others and his friends.  And he does ask “Why, Mommy?” just like I dreamed, well before he could talk.  They’re still the sweetest words, next to the last ones I hear every night, as I turn off his light and kiss his forehead as he goes to sleep:

“I love you too, Mommy.”

Originally posted at Toddler Planet, February 9, 2011