Looking for help? (cancer)

I’m still fighting pneumonia and the associated fatigue, but I received the most beautiful scarf in the mail from the people at L. Erickson’s Good Wishes program, which sends a silk scarf or head wrap to anyone losing their hair as a result of illness or treatment.  I’m assuming they mean cancer only and not alopecia, but it couldn’t hurt to ask!  Thank you, Good Wishes!

I’ve updated a resource page at Mothers With Cancer accordingly — check there if you’re helping a cancer patient and looking for resources for cleaning, cooking, hats and scarves, lymphedema sleeves, wigs, makeup, and how to organize to help a friend with cancer.  I don’t know what I’d have done without my friends this year and in 2007 – consider yourselves hugged!

Mothers With Cancer: Help page

A hard Thanksgiving

I’m sorry, but it was very, very hard to be Thankful this Thanksgiving.  I am, of course, enormously grateful and thankful and blissed-out over the success that medicine has had in extending my life four and a half years after my cancer was discovered in June of 2007.  As I look back over the year, I know just how lucky I am, luckier than friends lost along the way, and as my children are now in school and settled in small desks next to their own friends, present and future, I am lucky, we are lucky, and grateful.

but the grateful this week is overwhelmed by the unceasing pain.  I have not left my bed or downstairs chair since the chemo last Thursday, and at least four days (Sat, Sun, Wed, Thurs) have been lost entirely to the constant burning pain of the knot in my spine, just at my waistband.  All week, I sit in my chair downstairs with family, desperate not to lose another day to bed.  We talk, we read together, my fingers play with my Kindle Fire as family members come in and out of the room, company changing as the lighting does, throughout the hours of the day.  The pain is so intense I can barely see my loving family through it.  As my children climb onto my lap for snuggles, they push the shoulder this way or slide on my leg that way, and the knot on my spine cries out in pain. I do not push them off.  I mask my gasps and shift the children just a little to one side or the other, burying my head in their hair and hoping that they don’t hear, and that their brother doesn’t see my pain as he looks up from his talk with Grandma across the room.

They do hear, of course, and they do know, and they do listen, and they are on guard this week, running to my side when they hear a gasp and burying their heads in my chest as I grunt to get up from the chair.  They need reassurance, and I give it to them wordlessly, the only thing I can give today, this week.  A hug.  A pat.  A snuggle, a smile.  With or without words, telling them always Mama loves you.

The guilt of not working on the big projects and finishing the things that need to be finished is everpresent. I can’t decide, my body can’t decide, whether to rest for now so that I can recover and be healthy to finish each project when I feel better or to push forward and finish it right now so that it gets done in my lifetime, and so I have kind of a mid-illness crisis when I do get control of the pain, however briefly, and I don’t know whether to spend my time working or resting

but I always know to spend my time with my children, reading, or talking, or playing Yahtzee, Connect 4, and matchbox cars.  This is right, no matter how good or bad I feel, and I push myself to have these good times this week for them, for me, for family.  I push myself past the pain and into the love, as long as I can, and when I can push no longer I rest, asking my pallative care physician to increase the medication.  He does, questioning no longer, adding more medicine Thanksgiving night, as if this were the normal thing to do on the evening of a happy, family-centered holiday.  More pain control.  More meds.  Will it work?  For how long?  I don’t know, but I hope that it will work, and as I sleep I relax a little, the knot loosening, and I smile.  It worked.  It worked on Friday, and for part of the day today, and each day was a quiet day well spent.

At the end of the holiday, I am still grateful for the years given to me after the diagnosis, and the opportunity to be my children’s mother, even on the hard days.  To do research and to enjoy my work.  To push for good and to support those doing good.  To come back to the church and to seek for ways to use my talents on the days that I can stand to stand.  To be there for friends and family and children, and to make each day count.

I am so tired now, though, and now, I must rest again.

…

A favor to a friend, Susan McCorkindale, and in gratitude for the clinical trials, care, and pallative care given to me – if you live in the 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.

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.

Type A Mom

… at almost the last minute, I booked my flight for Type A Mom and the Bloganthropy awards last weekend.  I wasn’t going to go to this blogging conference (now actually called Type A Parent and nicknamed #TypeACon on Twitter), since it was two flights away and my arm swells when I fly (due to my lymphedema – you can read about it on the tab above if you’re curious), but I was encouraged to go and I’m overall very glad that I did.

After I finished the panel at the Low Cost Planetary Missions 9 Conference, I had dinner with my husband and kids and headed to the airport.  Two short flights (well, ok, the second was anything BUT short! 2.5 hours gate-to-gate from Charlotte to Asheville!) later and I was on the ground in Asheville, walking out into the cool night air to find … nothing.

No taxis.

No buses.

Nothing.

I had connected with another blogger on the plane, thanks to Twitter and a long on-runway delay, and we quickly called a taxi to take us to the conference hotel.  Now you’d think this would be the boring part of the story, but then again, you’ve probably never been in an SUV taxi with black light, dance music, and a disco ball — but only two working seatbelts and curvy mountain roads.

Bygones.

I arrived at the conference and bunked in with roomies C.Mom and TechSavvyMama, only to oversleep justalittlebit the next morning, arriving in time to hear Patti Digh, an inspiring speaker whose life changed when her father found out he just had 37 days to live.  Her session was followed by several others, but the highlight of the day for me was table-hopping to hug the necks of friends far and near who I love but don’t get to see nearly often enough!  I had such a great time with TechSavvyMama Leticia, C.Mom Elena, TeachMama Amy, Jessica/Kikarose, Justice Fergie, BetterinBulk Lolli, Modern Mami Melanie, a new friend from the Marble Jar, and so many others.

There are pictures — somewhere.  I’ll pull them together if I can — I was unfortunately cameraless.  But this is one that I need to show you, because …

I won!

On Friday night, I was given the Bloganthropy Award, an award which “recognizes women bloggers who have made a difference by using social media effectively to support a good cause.”  I’d say we’ve done that here, right?  Thanks to all of you for all your work spreading the news about inflammatory breast cancer, the breast cancer that kills without a lump, about lymphedema and the new program that provides FREE lymphedema sleeves to breast cancer survivors who can’t afford them, and for joining — and writing about — the Avon/Love Army of Women — we have made a difference.

A real difference.

And last Friday night, we won an award.

I accepted it happily, hugging Katherine Stone from Postpartum Progress, presenter and 2010 winner, and Debbie Bookstaber, Bloganthropy Co-Founder.

There was a giant check, which they tried to FedEx me afterwards (I’m happy with the real, small, spendable one, thank you!).

There was laughter and cheering, and then, when I got to speak about my cause for a moment, there were tears.

Because I accepted this award not just for myself, but for all of your work too, and in honor of the 20-or-so writers at Mothers With Cancer, the blog that opens the curtains that hide cancer patients and their joys, their struggles, their fears, and their families, letting their light and their love and their lives shine through, even after we are gone.

This was a big moment for me.  Thanks for sharing it with me that Friday, Type A Mom, and for sharing it here with me today on the blog.

You have made a difference.