Bloganthropy and Lymphedema

A little bit of good goes a long way.

A couple years ago, two women named Rachel and Robin created a new product – a compression sleeve that they and their friends would be willing to wear to control their lymphedema, swelling in the arms caused by the removal of lymph nodes during a mastectomy.  They started a company called LympheDIVAs; Rachel’s brother Josh and their parents continued to improve the product and market it to other breast cancer survivors after her death. 

Carole lost her cousin Crickett to metastatic breast cancer too, but instead of wailing at the universe, Carole and her aunt Bonnie set up a foundation to help other breast cancer survivors feel good about themselves again.  Carole sent an email offering help to survivors, and one copy landed in Sue‘s in-box. 

Sue forwarded the email to me, offering me the opportunity to be pampered a little, because she knew I was suffering from chemotherapy again, and it touched my heart.  My heart was kinda busy, though, because my physical therapist Jonelle had mentioned casually while working on the lymphedema in my arm that it was so great that I was wearing a lymphedema sleeve to control it — many of her patients couldn’t afford one.  When I arrived home and checked my in-box, there was the opportunity to make a connection and to fix this wrong that lay on my heart — to help others have what I have, the opportunity to control this medical condition at home, without weekly trips to the physical therapist.

Three phone calls later, Josh and Carole agreed to provide donated lymphedema sleeves to patients in need, and the lymphedema sleeve project was on.  The problem then was how to make people aware of the opportunity, so Sue and I sent a couple emails and a few tweets and then The DC Moms and twitter friends and blog friends and friends of friends stepped up to help, to spread the word, one tweet, one post, one update, one person at a time.

I wrote a post, Sue wrote a post, Minky wrote a post, and the news gained traction.  Over 100 people tweeted the links that week.  150 people shared a link on Facebook.  Over 40 bloggers added their posts to ours, in attempt to saturate the internet with the news, so that a woman in need, searching for help to afford lymphedema sleeves or other post-mastectomy gear, could find it. 

Kristen, Jessica, Amie, Joanne, Marty, Victoria, and Elizabeth then put their money where their voice is and donated $1/comment on their lymphedema post.  Others went to donate so that additional sleeves could be bought as needed, and before we knew it, $1518 had been sent to Crickett’s Answer for Cancer by over 20 people, and 36 new breast cancer survivors were helped in the first 40 days.  

On Friday, the project was recognized by Bloganthropy, with me named as January’s Blogger of the Month.  Thank you, Bloganthropy, but the award really belongs to all of the bloggers who helped saturate this part of the ‘net with notices that there is now help available for breast cancer survivors who need but can’t afford compression sleeves to control their lymphedema. 

Thank you, friends.  Every day, your actions remind me that there is indeed good in the world.  Here are the posts that were written in support of this effort, and tweeted ’round the world:

Aimee: http://smilingmama.blogspot.com/2011/01/surviving-in-style-free-lymphedema.html
Amie: http://www.mammaloves.com/2011/01/wanna-join-an-army/
Amy:  http://teachmama.com/2011/01/new-for-us-friday-help-for-cancer-patients.html
Ann Bibby: http://www.care2.com/causes/health-policy/blog/-blogger-reaches-out-to-breast-cancer-patients/
Becky:  http://www.morebirthdays.com/blog/featured/the-power-of-one-helping-fellow-survivors/
BlogHer (Mel): http://www.blogher.com/start-out-your-new-year-helping-great-project?wrap=blogher-topics/conditions-ailments&crumb=32399
C. Mom:  http://www.lacaramamma.com/2011/01/06/can%E2%80%99t-afford-lymphedema-sleeves/
Crunchy Chewy Mama: http://crunchychewymama.com/index.php/when-a-friend-gets-cancer/
Dr. Kathleen Ruddy: http://breastcancerbydrruddy.com/2011/01/25/recycling-information-help-for-lymphedema/
Elaine:  http://connorandhelen.blogspot.com/2011_02_01_archive.html
Elizabeth: http://halfchangedworld.com/2011/01/for-whymommy/ Florinda: http://www.3rsblog.com/2011/01/for-whymommy-help-for-cancer-survivors.html
Garza Girl: http://www.garzagirls.com/2011/01/24/f-off-cancer/ and http://www.garzagirls.com/tag/whymommy/
Ilinap: http://www.dirtandnoise.com/2011/01/breast-friends-and-a-39-mile-walk-in-the-park.html
J.J. http://caffeineandaprayer.com/2011/01/09/lymphedema-sleeves-real-help-for-breast-cancer-survivors/
Jane:  http://jane.whiteoaks.com/2011/01/08/lymphedema-sleeves-demystified/
Jessica:  http://aparentinsilverspring.com/2011/01/a-parent-in-silver-spring-on-cnn-how-the-story-changed-how-im-changing-it-again-for-cricketts-answer.html
Joanne:  http://www.punditmom.com/2011/01/princesses-fighting-cancer
Jodifur:  http://jodifur.com/2011/01/cant-afford-lymphedema-sleeves.html
Justice Stacey:  http://mamalaw.com/2011/01/cant-afford-lymphedema-sleeves/
Khara: http://babymammachronicles.blogspot.com/2011/01/help-for-breast-cancer-patients.html
Kim: http://www.sheposts.com/node/859
Kristen: http://www.motherhooduncensored.net/motherhood_uncensored/2011/01/whymommy.html
Lara: http://chickennuggetsofwisdom.com/2011/01/24/no-princess-fights-alone/
Leticia:  http://www.techsavvymama.com/2011/01/no-princess-fights-alone-join-army.html
Liz: http://www.thisfullhouse.com/reviews/2011/01/good-causes-cricketts-answer-to-cancer.html
Lynn:  http://organicmania.com/2011/01/07/helping-those-who-need-it-most/
Marty: http://canapesun.blogspot.com/2011/01/lymphedema-sleeves-for-every-survivor.html and http://canapesun.blogspot.com/2011/01/lets-all-be-copycats-raising-money-for.html
Mayberry Mom: http://mayberrymom.com/2011/02/04/on-not-fighting-alone/
Mel: http://www.stirrup-queens.com/2011/01/322nd-friday-blog-roundup/
Michele: http://scrapsofmygeeklife.com/everything-else /cant-afford-lymphedema-sleeves/
Michelle:  http://www.wifeandmommy.com/cant-afford-lymphedema-sleeves/
Minky:  http://dialmforminky.com/2011/01/need-help-affording-lymphedema-sleeves/
Mod*Mom: http://www.momblognetwork.com/%5Btermpath-raw%5D/lymph-edema-sleeve-giveaway-12000
Robin: http://noteverstill.blogspot.com/2011/01/rare-psa-lymphedema.html
Robin: http://wwwmylifeasitis.blogspot.com/2011/01/cant-afford-lymphedema-sleeves.html
Sam: http://www.momblognetwork.com/%5Btermpath-raw%5D/help-our-friends-support-crickett-s-answer
Stella: http://imstell.wordpress.com/2011/01/06/advocacy-and-lymphedema-sleeves/
Thien-Kim: http://www.imnotthenanny.com/2011/01/cant-afford-lymphedema-sleeves-new-help.html
ThisFullHouse @ Wellsphere: http://www.wellsphere.com/parenting-article/for-whymommy-give-cancer-the-virtual-bitchslap-it-deserves/1325109
UrbanMama:  http://spa.typepad.com/mamas/2011/01/index.html
Vera: http://breast4healing.amplify.com/2011/01/25/361/
Victoria: http://www.themummychronicles.com/2011/01/copy-cat-for-cancer.html
Wendy: http://wendyharpham.typepad.com/healthy_survivorship/2011/02/help-for-patients-with-lymphedema.html

This effort was recognized by writers at the American Cancer Society, Bloganthropy, BlogHer, Care2, Mom Blog Magazine, and ShePosts as being an exciting community effort.  Thank you all.  And if I missed your post or it hasn’t gone up yet?  Let me know.  I’d be thrilled to add even more!

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Can’t Afford Lymphedema Sleeves?

Are you or do you know a breast cancer survivor?  Please read today’s post and pass it on.  If you can’t afford to purchase a lymphedema sleeve, gauntlet, and/or glove, and you can’t manage your post-mastectomy swelling, Crickett’s Answer and LympheDIVAs want to help.

Today, I am pleased to announce a NEW opportunity for breast cancer survivors who have had a mastectomy and/or axillary dissection of the lymph nodes due to breast cancer and have swelling of one or both arms but cannot afford the $200-$500+ cost for two sets of the compression sleeves and gauntlets that survivors with lymphedema must wear every day to keep the swelling in check. 

Although lymphedema sleeves are medically necessary, they are not covered by Medicare OR most insurance plans under current law, and thousands of survivors go without the sleeves, needlessly suffering congestion, swelling, and pain that interferes with their normal activities.

Crickett’s Answer, a 501(c)3 nonprofit organization founded in memory of Crickett Julius, has just joined forces with LympheDIVAs to help other breast cancer survivors who fight not just the beast that is breast cancer but also the fallout of side effects that includes lymphedema, which may limit survivors’ activities.  By working together, they are now able to provide needed lymphedema sleeves and gauntlets to women who need them but cannot afford them out-of-pocket or convince their insurance companies to pay for them.  They do this in honor and memory of their loved ones.

Crickett Julius survived breast cancer only four months, but her mother and cousin are dedicated to helping other women enjoy their life post-diagnosis through Crickett’s Answer, a 501(c)3 organization that provides wigs, mastectomy products, oncology/mastectomy/ lymphedema massage, facials, and other pampering services as a way to help women feel feminine and beautiful after losing their hair and/or breasts.

LympheDIVAs was founded by Rachel Troxell and Robin Miller, friends and breast cancer survivors who wanted to create a more elegant and comfortable compression sleeve.  Rachel continued to build the company during her later recurrence.  Even though she died two years ago, at the age of 37, her father, mother, and brother continue to grow the company in her honor and in the hope that LympheDIVAs’ compression apparel will continue to inspire breast cancer survivors everywhere to feel as beautiful, strong, and confident as Rachel was.

To ask for help, please download and complete the forms at Crickett’s Answer, writing in “lymphedema sleeve and gauntlet” on page 2 of the application. 

To help someone else, please copy and paste this post on your blog or email it to a friend (or your local cancer center!).

To donate, go here. 

To help change the law so that this medical garment is covered by cancer survivors’ insurance, stay tuned for more about the Lymphedema Treatment Act when it is reintroduced in the 2011 Congress.

Because of these women, these three thirty-something women who didn’t ask to get breast cancer, and the men and women who love them, there is now help for women who can’t afford lymphedema sleeves, a medically necessary garment not typically covered by insurance.  Their legacy lives on.

Note: Cancer patients who are members of the National Lymphedema Network and who are treated by an NLN therapist can also apply to the NLN garment fund, set up in honor of Marilyn Westerbrook. 

The Path Report

When you have surgery to remove a cancerous mass, or several, afterwards you don’t really know much until about a week later, when the path report comes back.  It’s weird and strange and confusing, because the surgeon was just mucking around IN your body and all, but in fact it’s true.

After the surgery, the surgeon comes out to the waiting room and tells your family how the surgery went.  She tells them why it took longer than expected (in my case, she was stitching up the blood vessels and lymph vessels carefully, so carefully, to help avoid lymphedema, and the resident, who is in plastics, was tidying up, helping to avoid the dreaded “dog ear” left behind by mastectomies without reconstruction), what they saw or felt (in my case, lymph node after lymph node that was lumpy, bumpy, or otherwise suspicious for cancer, and which they pulled as if they were swollen grapes), and what tissue was taken (the whole pad of lymph nodes, and more nodes besides).  And then you wait.

First the family waits for the patient to wake up, and then the patient waits for the world to return to normal (oh! anesthesia!) and then they all go home and wait for the results.

Which brings us to today.  We headed to the cancer center yesterday morning to have the softball-sized lump of fluid dispersed.  Now, I realize this is way too much TMI for the bloggy world, but I swore I’d be honest and help lift the veil around cancer treatment, so get this — to drain the fluid, the surgeon sticks a GIANT NEEDLE directly into the still-healing scar and just pulls the fluid out.  No anesthesia, no numbing, no freakin’ ice involved — just a pump, essentially, because, in her words “this won’t hurt; it’s all numb in that area.”  Um, NO.  But it wasn’t painful, just a little stinging where it pulled on my stitch.  It was weird as anything, but OH, do I feel better!  (As per usual, I’m on the ugly side of the side effects, and I’ll have to go back for this at least once and maybe twice again this week.  Annoying, but really just from a schedule perspective.  I’m trying to work during preschool, not fill the time with hospital visits!)

Anywho.  As C helped me sit up (Have you ever tried to sit up without using your right arm/shoulder, which aggravates your lymphedema on the right side, or your left arm/shoulder, which could cause lympedema on the left side?  Without falling off the exam table?  Awkward!), the surgeon sat down.  (Why isn’t she leaving? I mean, I adore her and all, especially after the incredible patience she had stitching up all those vessels so nicely, but?)

The path report came back.

Oh.  I wasn’t prepared for this.

Sure, we were going to ask about it, as active participants in my care, but we didn’t expect it to be back and her to be prepared to discuss it until Thursday.  At least.  I’m still in my gown, gaping at the front awkwardly, and I’d really like to put my own clothes back on now, thankyouverymuch.  But we listen.

And here’s the deal.  It’s bad news and good news and weirdness and relief and fear, all wrapped up together.  I’m not sure I can convey it all here, but I’ve been thinking of nothing else since this moment and I need to tell you.  Also? It’s 4 a.m.  If I don’t deal with this now, I’m just going to anguish about it, and there’s no going back to sleep at this point, so here goes.

Thirteen positive nodes.

The pathologist studied the tissue that the surgeon removed, and the student or nurses put in carefully separated vials in the operating room, and he studied it under the microscope or whatever amazing instrumentation they use in that lab now.  The tissue contained 28 lymph nodes (that number isn’t important — it’s essentially all of the ones under my arm and a good number besides).  Thirteen were filled with cancer.  Adenocarcinoma, said the path report, which I learned means cancer in a glandular tissue like lymph nodes.

I don’t know if you remember this, but waybackwhen, my oncologist said that there would likely be no chemo, and there would only be radiation if there were at least four positive nodes, which she didn’t expect, although six showed up on the PET scan.  So we’ve been thinking that I start radiation in six weeks, after the scar heals and I lead a lunch-and-learn at a conference and co-lead the proposal writing workshop and turn in the first six chapters of my book and the kids finish school and summer begins and I can rest on the hammock if I need to, but really it’s no big deal.

Oops.

Thirteen positive nodes changes all that.

We haven’t yet met with my medical oncologist, but my surgeon has, and it looks like there may be chemo indeed in my future.  My near future.  Everything on the schedule is on hold.  The lunch-and-learn. The workshop.  The seminar at JPL.  Preschool.  BlogHer.  The kids’ school in the Fall.  It’s all up in the air now, as we see how much and how long the chemo will run, and how intense it will be.  We’ll have to have a port put in (and you simply must click that link; Frances is amazing and brave and beautiful) and then start treatment.  But, again, we don’t know any of that yet for sure.  We’ll meet with her next week.  For now, we wait.

There’s a twist.

Are you wondering what the good news might be?

As it turns out, the surgical oncologist and medical oncologist are rethinking not just treatment, but diagnosis.  There’s a theory, which I’ll explain tomorrow, that suggests that this might not actually be metastasis of the inflammatory breast cancer, but in fact a whole new instance of (much more typical and treatable) invasive breast cancer.

Which means that we totally did the right thing by having surgery, and that there is hope, much more hope than if this were a metastasis.  Which means I’ve survived the two-year mark in which inflammatory breast cancer is most likely to recur.  Which means …

Oh, this is good news indeed.

And although I’m sore under the arm and tire easily, I feel lighter without the cancer in my body this week.  I am more energetic than last week, and not as sluggish as I was when I had to drag that cancer around and meet its energy needs as well.

I am hopeful.

If you read nothing else, read this:  I am hopeful.

Preparing for surgery

How do you prepare for surgery?

The hospital thinks they know.  When you call for your pre-op instructions, they tell you when to stop eating and drinking, whether to take your aromasin and neurontin, what soap to use for your morning shower, what time to be at the hospital, and what hospital entrance to use, and then they ask, “Do you have any questions, dear?”

Why yes, I do.

I have questions.  This week, I have had questions about everything, from, “Will this cure my cancer?” to “How will I know if or when the cancer comes back?” to “What do I tell my children?” and “Should I spend today getting my affairs in order, hugging my children obsessively until they protest, making the house ready for a convalescence, or is it okay to just proceed as if it were an ordinary day?”

Should I do laundry, or review my will?

It’s a minor surgery, they say, outpatient even, and will be no big deal.  I believe that.  It is a minor surgery.  It is no big deal.  Well, to them.  To me, it is probably the last day I can lift things with my left arm, since I have a high risk of developing lymphedema over there as well.  It’s the last time I can lift my children for a hug without feeling guilty, since they’re well over 10 pounds now, and that’s my limit without triggering my arm to swell from lymphedema.  It’s the last time we can remove a body part to remove the cancer, I think, since I kind of need the other ones, unless I get a recurrence in just one kidney.  The next time the cancer comes back, if it comes back, we’ll have to start chemo, and we won’t know when to stop.

Because remember, there is no research to tell cancer patients when maintenance chemo can be stopped.

There isn’t even conclusive research to tell me whether to have surgery tomorrow, to start chemo instead, or to simply continue on with the aromasin or another drug.  There are opinions based on experience — oh, there are plenty of those — and I’ve gotten opinion after opinion from oncologists, nurses, radiation oncologists, advocates, patients, and others who are just looking out for my welfare.  I appreciate it. I do. I feel SO much better today, going into surgery, than I did last week when I got the diagnosis.

I still have questions, but they are now questions that cannot be answered without additional medical research into the nature of this disease.

…

When I got the diagnosis, I skipped town.  My family and I threw some clothes into a suitcase and the kids in the car and we left for the family vacation that we’d planned for well over a year.  We spent the week in Florida, at the beach, at the pool, together with grandparents and cousins and in-laws, and we smiled and helped the children have a vacation to remember while we, my husband and I, checked our iPhone and our Blackberry and called doctors and nurses and advocates and hoped for encouraging news, conclusive recommendations, or at least appointments with the best of the best.

We were helped a lot by a lot of people.  Thank you. But in the end, it all came down to this:

• There is no (known) cure for cancer.
• Cancers are as individual as the individuals that carry them.

The research on IBC metastasis is so new, and so limited, that no one can say for sure, “Do this, not that,” and if they do? Well, they’re perhaps too confident, as there is not yet a consensus in the medical community or papers in the literature.

We need the research.

I will do my part.  Tomorrow, as the six tumors are removed from my body, they will be flash frozen in vials designed to keep them usable by scientists and medical researchers.  The doctors will use what they need for me, and then the rest will be sent to the IBC Biobank for future research or out for the Target Now Complete testing, one of the first to look at molecular markers that may indicate additional options for my treatment.  I’m trying to make the latter work out, but if not, I’ll send it to the Biobank in hopes that it will help someone else.

I’ve checked ClinicalTrials.gov for inflammatory breast cancer trials, and signed up for Avon’s Army of Women to be notified when a researcher is looking for people to participate in studies of new treatments, complementary medicine, or information dissemination, online or in my area.  It’s important, this research, and the Army of Women is gathering 1 million women together who are willing to participate, locally in person or online, with and without cancer, so that the scientists can study what causes, and what cures, cancer.  If you can, please join the Army with me — and say yes to just one study this year if the opportunity arrives in your in-box.

We need the research.  And we need it now.