Need Help Buying Lymphedema Sleeves?

January 5, 2011

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 JuliusCrickett 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.

Rachel TroxellLympheDIVAs 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


Lymphediva SALE

March 6, 2010

Lymphediva, maker of fashionable lymphedema sleeves and gloves, has released a limited-edition sleeve with a gorgeous print that will make you feel good in several ways:

  1. Lymphedema control. That’s the key, of course, and the first requirement for a sleeve;
  2. Cool wicking fabric that keeps you comfortable even though it’s an additional layer;
  3. Gorgeous designs!
  4. For every YSC sleeve purchased, Lymphedivas will donate $10 back to the Young Survival Coalition, in honor of their 10th anniversary conference that Sarah wrote about here last week.
  5. And if you order before Monday, this fun sleeve is only $65 — but on Monday the price rises to $90.

I wore another pattern, the black paisley armsleeve, at my big meeting last week and I have to tell you, I felt totally badass.  It looked like a tattoo sleeve!  You know, if you’re into paisley tattoos.

Anyway, I feel like I just discovered a fashion secret for those of us with lymphedema, and I wanted to share.  Lymphediva sleeves (Class I and Class II compression) and gauntlets are available at Lympehdiva.com, Lymphedema Products, and from other stores that sell products to manage lymphedema.

Disclosure: I have no marketing relationship with Lymphedivas or Lymphedema Products, and I was not compensated for this post. Lymphedivas was founded by two young breast cancer survivors with lymphedema, and I’ve been following the company’s success for several years.  Now that they make Class II compression garments, I can actually own one.  Or three.


The 10Th Annual Conference For Young Woman Affected By Breast Cancer by Sarah

March 3, 2010

Well I made it home. No plane crash or traumatic incident! After not flying for 13 years I was a bit worked up about traveling. Thank goodness for anxiety meds. All aspects of my traveling experience went smoothly (with the exception of an overlooked bottle of cranberry juice in my purse, oops)

The 10Th Annual Conference For Young Women Affected By Breast Cancer was so much fun, I even met two survivors on my plane ride down to Atlanta. We were all in the same row! It was so cool.  I went down a day early and was able to spend time with two of my Hubby’s Sisters. We had a nice girl time. I don’t often get to visit with them without 12 kids running around. 

They kept us very busy at the conference. We had lots of time to network and I met so many wonderful inspiring young women who face the same things I do everyday. Some of us were post treatment and some still in treatment proudly wearing their wigs, hats and scarves. All with bright eyes and beautiful smiles. One of the things I was really looking forward to was meeting some folks I had never met in person. One of the ladies from Mothers With Cancer was there all the way from Canada.  I love Laurie’s writing and I have also read her book Not Done Yet. It is about her journey through cancer diagnosis and treatment. It is a great read and I highly recommend it even if you are not a woman facing breast cancer. I wish I had more time to talk and hang out with her. She is such a great person and I am inspired by her. The first time I saw her she happened to be raising her hand in a lymphedema workshop a few rows back from me. I knew it was her the moment I turned around. When we had a short break I went right over to her and introduced myself to her. She is as wonderful as I thought she was. We found a little time to chat here and there, and I am so happy that I got to meet her face to face.

There were some really good speakers at the conference. Dr Julie Gralow, professor of Medical oncology at the university of Washington school of medicine, Julia H. Rowland PhD from The National Cancer institute, and Congresswoman Debbie Wasserman Schultz. They were very informative speakers and I enjoyed listening to all of these woman speak about cancer and survivorship.

I was able to go to several workshops. I chose workshops on lymphedema, triple negative breast cancer, both of which I found very informative. I was very encouraged to hear about some new drugs that are about to come out that will target triple negative breast cancer. Us triple negative cancer patients do not have any target treatments like most woman do that have hormone receptive cancer or that are HER2+. This is wonderful news for triple negative breast cancer patients. I learned so much new information that I did not know before. One quote I heard during the conference was “Cancer happens to a person not a body part” Sometimes some of us feel like our bodies are treated but our whole person is not treated.

We also had some fun at the conference. I was lucky enough to be traveling with 4 other woman from my support group. We had so much fun hanging out and just having fun. We had lots of opportunities to let loose a bit and have a great time, laughing a just goofing off.

There are so many good things I carried away from the conference. But, best of all was the friendships and camaraderie between breast cancer survivors. There is always a conversation to be had between two breast cancer survivors. We all have our own cancer stories and our own treatment issues that we go through. It was a wonderful feeling to be surrounded by woman that knew about where I have been on my journey through cancer. It’s something that is very hard to put into words, but we all get it. There is always a nod and a Yes! Sometimes we feel alone with our disease, but we all have a very strong common bond. It’s a sisterhood of sorts. I felt bonded with complete strangers I had never met before. I am so glad that I was able to attend this years conference and I am looking forward to going again next year.


The world of lymphedema (by Sarah)

December 6, 2009

I have been welcomed to the world of  lymphedema. After I was diagnosed and had surgery my surgeon briefly talked to me about it but said that none of her patients got lymphedema. I thought I was safe, thinking I would not have a problem with it. I was wrong, I have been suffering from it for some months now and did not realize it. I am suffering from mostly truncal lymphedema. Like Stella my symptoms are mostly pain with a bit of swelling. I have made lots of trips to my oncologist complaining about my pain and was worried that my cancer had come back. Little did I know that lymphedema is very painful. Something I was not told before. I have been to a therapist 4 times now and it seems to be working for me. I am educating my self on how to move my lymphatic fluid that builds up under my arm and in my back. I have been fitted for a sleeve and a vest as well. I will be interested to see how the vest works, I will be wearing it at night and am hoping that I will sleep more comfortably.

The signs of lymphedema may include:

  • swelling in the breast, chest, shoulder, arm, or hand
  • area feels full or heavy
  • skin changes texture, feels tight or hard, or looks red
  • new aching or discomfort in the area
  • less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
  • trouble fitting your arm into jacket or shirt sleeves
  • bra doesn’t fit the same
  • ring, watch, and/or bracelet feels tight but you have not gained weight

Early on, the lymphedema may be relieved by raising the affected limb and the skin usually stays soft. But over time, the swollen area may become hot and red and the skin hard and stiff.

Here is a link with more information that is very helpful. My advise is to educate yourself, know the signs of  lymphedema and know your body. Talk to your doctor and be persistent. My doctor told me I did not have a problem but the lymphedema doctor saw my problem right away.

Message, the right kind of message is the key, I was not educated and was not doing my message correctly. If you do have signs of lymphedema get to a good certified lymphedema therapist right away. Your doctor should have a list of good therapists in your area. I feel more relaxed now and know why I have this pain. The pain isn’t fun but I am comforted by the fact that I know what is causing it and am getting the tools to deal with it.


My story, our story

November 19, 2009

Talk given at the American Cancer Society’s Annual Meeting, November 19, 2009.

Good morning.

When I got sick, I had no idea how much my life was about to change.

I was 34, a mom of a toddler and a newborn baby, and my days were filled with caring for them, keeping the family going, and writing about our adventures on my blog.  I was totally dedicated to being a good mom, and giving my two little boys the best childhood that I could.

Then my mother-in-law was diagnosed with cancer.  We were told that she had infiltrating ductile carcinoma.  Although I thought I was relatively well-informed, I had no idea what that was.   So, after I put the toddler to bed and started nursing my infant, I googled it.  The American Cancer Society’s web page told me what it was, and that there were other kinds of breast cancer as well.  Infiltrating lobular carcinoma.  Invasive ductile carcinoma.  Invasive lobular carcinoma.  Words I’d heard but didn’t ever have the need to understand before then.  And then, at the bottom of the page, was something I’d never heard of.  Inflammatory breast cancer.  This cancer was uncommon, it said, and different from the others.  Usually there is no single lump or tumor. Instead, IBC makes the skin of the breast look red and feel warm.”

That’s funny, I thought.  Sounds like mastitis.  But that’s common in nursing moms.  I think I’m getting a case right now.

“It also makes the skin look thick and pitted, something like an orange peel. The breast may get bigger, hard, tender, or itchy.”

What strange symptoms, I thought, and stopped to scratch something tickling my chest.

“In its early stages,” I read, “inflammatory breast cancer is often mistaken for infection. There is no defined lump…It usually has a higher chance of spreading and a worse outlook than invasive ductal or lobular cancer.”

Hmmm.

I tried to shift the baby to nurse on the other side, but, as usual, he would have none of it.  He fussed and cried, and I gave up, removing him from the dimpled breast.  The next morning, I called my OB to ask him about the baby refusing to nurse.  I’d been to the pediatrician and the lactation consultant many times in the past 5 months.  Why not, I thought, give this a try?

My OB didn’t know what to make of it.  “I’ve never seen this before,” he said.  “I don’t know what it is, but I don’t like the looks of it.”  And just like that, I was sent to the Lombardi Cancer Center, and my journey with inflammatory breast cancer began.

After a whirlwind week of appointments, a mammogram, an ultrasound, and a set of seven core biopsies on my right breast, I was at home, alone, waiting for the results.  My husband had driven out to help his mother after her lumpectomy, and I was on the computer, as I often was, thinking out loud on my blog.  I was reeling from my mother-in-law’s diagnosis, and, as the rash on my breast grew redder every day and began to spread across my chest, I had to talk about it.

So I did.  Tentatively at first, sharing the news of my mother-in-law’s diagnosis, asking for information and statistics on surviving breast cancer, because I trusted my friends online to know where to find the facts, and I was scared to do much research myself.  Then I read that 1 in 8 women will get breast cancer in their lifetimes.  My playgroup has 8 moms.  I was really struck by that, and I began to write about what I was learning every day.  As I went through the stages of testing, I wrote about the experience.  I wrote about what it was like to lie on the cold table while the surgeon plunged a needle into my chest, seven times, to take the biopsies.  I wrote about the waiting.  The fear.  The craziness that was watching this rash move across my chest in a matter of days.

And for the first time, I admitted that I was scared.

I thought at first that this would drive my readers away.  I mean, there weren’t many of them, and I was known for happy, positive blogs in the past.  But this wasn’t a happy, positive time.  This was real, and it was, in many senses, the unknown.

You see, twenty-five years ago, my grandmother was diagnosed with cancer.  I don’t know what kind.  They didn’t talk about it, and in fact she never told her own children whether it was ovarian, uterine, or cervical.  All we know is that it was “a female cancer,” and, at some point, she lost her hair from the treatment.  It wasn’t talked about in those days.  But if it had been talked about, and if I had any idea that I might be at higher risk, I might have been more informed going into this.

So I began to write.  Every day, I wrote about what tests or treatment I had, how it made me feel, and what I was thinking about for the next step.  I thought people would leave my blog in droves.  But they didn’t.  They stayed.  My friends stayed with me, and began to offer comments of support.

When I got the diagnosis of “cancer,” it came with a mandate of “chemo,” starting the next week, the day after the fourth of July, and our family picnic that we always host for my moms’ group.  I was devastated.  It didn’t make sense.

So I wrote about it.

I wrote about the fear of putting my life as I’d known it on hold, and starting something new.  I wrote about the rash that by then had covered my breast, and about how tired I was all the time.  I became weak, and scared, and spent many days in bed, too tired to move, too exhausted as my body fought off the cancer.

And then, I went to chemo.  More than anything at this point, I was terrified of the unknown.  Aren’t chemo wards for sick people?  What would it be like?  What should I expect?  And so I wrote about it.

And as I wrote about it, more people came to my side.  Friends of friends at first, and then friends of friends of friends.  My best friend made a logo, and asked people to post the logo on their site to show that they supported me in my fight, and it began to pop up everywhere, even on sites that I had never visited before.  I wrote an article about IBC and its symptoms, and asked people to post it, to spread awareness, to let other people know that if they experience a change in one breast and not the other, that they should notice, and call their doctor.

400 blogs reprinted my post.  My story was picked up by newspapers, TV, Health magazine, and CNN.

But that wasn’t what made the difference to me.  What made the difference to me, in my survival, was the incredible outpouring of support that these bloggers, these unseen faces typing at keyboards in kitchens and in offices across the country, were sending me.  They were sharing their lives with me, supporting me, telling me that I was strong, that I could do this, and, sometimes, that it was ok to be weak and to cry.

They became my link to the outside world.

Chemo was hard on me.  Because of the toll that it took and the risk of infection, I rarely left the house during my 6 months of treatment and recovery from the double mastectomy that followed.  The taxol caused such neuropathy that I lost the ability to move my legs at all, and I rarely left my bed.  I had to miss playdates, moms-night-out, conferences, and all the little things that make up a life.

But I had something.  I had a link to the outside world through my computer.

Through social media, I was able to write about my experiences – and get comments, validation, questions, and support, as soon as I hit “publish.”  I was one of the first to use twitter for real-time health updates as I prepared and then recovered from my mastectomy.  And let me tell you, hearing all the wonderful, supportive, loving comments that poured in during those terrible days of drains and blood and loss helped me face the next day, and gave me the confidence to go out in public again, even though I had no reconstruction and choose to not wear prostheses.

I attended the BlogHer conference in Second Life, soon after I was diagnosed, and in fact, I used it as a testbed for being bald.  I made my avatar, the little person that represents you on screen, bald, but in an elegant swirly dress and heels.  I began to interact with others as a bald woman, although I had not yet lost my hair in real life.  It was awkward, at first, but soon I found that it opened up space for real conversations.

And I found that nearly everyone has been touched by cancer.  And nearly everyone still hurts.

As my chemo treatments continued, I did lose my hair.  But it was not traumatic.  I had already dealt with the trauma on my time, in my space, in Second Life.  And I went through my treatment period without a wig, proud of my scars, because they mean that I was given a chance to fight.

Social media kept me connected to a world that I was otherwise cut off from the moment I began treatment for cancer.  It helped me build friendships, have people to talk to, attend conferences, and stay in touch with the people in the world even when I was confined to bed.

The funny thing was, I wasn’t just talking to survivors.  Everybody has a cancer experience, and nearly everyone wants to talk about it, and to help those currently going through it.  Daughters of survivors, and newly diagnosed patients began to find my blog as I finished treatment, asking for support, asking for advice, asking not to be forgotten while they spent their own time alone in the chemo ward.  I knew this was a project way too big for me alone.  So I started a blog called Mothers With Cancer, and invited other moms I knew to join me.  Today, the blog has 20 writers, over 150,000 hits, and a substantial archive of personal experiences indexed by type of cancer, treatment, emotions, and children’s age.

And what we’ve discovered is this.  No matter what we have to go through to beat this thing, it’s so much easier to go through it together.  Whether as part of our Mothers With Cancer site or simply by speaking out on our own blogs, the social media support has been critical to our recovery, helping each of us know that no matter what, we are not alone.


Truncal Lymphedema

November 16, 2009

Do any of you ladies suffer from truncal lymphedema?  It frequently occurs after reconstruction or lung surgery.  Symptoms can range from very minor swelling or discomfort to severe pain and swelling that may encompass up to the entire chest, back and shoulders. 

I have a bit of truncal lymphedema in my right underarm.  Thankfully, it is very mild.  For about a year after my reconstruction I felt like my underarm was bulgy and very uncommfortable.  When I took off my bra at the end of the day I felt like I was still wearing it all evening.  Yet when my oncologist compared my underarms she said she couldn’t see any swelling.  Huh.  That just means that even the most minute edema is painful and uncomfortable.

Unfortunately, my mom has not been so lucky.  She is suffering from fairly severe truncal lymphedema.  At first it was just the underarms like mine.  Over the last year or more, however, it has spread across her unreconstructed chest wall, around her ribcage and is beginning to spread across her back.  According to her, it’s so bad as to look like her old breasts have relocated to her sides under her arms.  GreatThis is what truncal lymphedema looks like.

She routinely does self massage and physical therapy with a lymphedema masseuse.  She has to or she looks like she never had her mastectomy.  The trouble she’s recently been having is that the lymph build up across her chest has stretched her skin much like expanders do prior to receiving breast implants.  Again, yeah!

My mom recently (this morning) consulted with a plastic surgeon about removing all the extra skin.  Her appointment was something less than satisfactory. 

She was told that while he could remove the skin the swelling may just return and stretch it out all over again.  Ok.  We both kind of figured that.  But the surgeon also told her that it was not lymphedema.  What is it, then?  Excess fat. 

Yes.  You heard me right.  Excess. Fat.

Forget that two oncologists, a general practitioner and a lymphedema physical therapist all agree it is truncal lymphedema.  Disregard obvious and predictable positive response to manual lymph drainage.  Discount completely the possibility that a patient who has undergone chemotherapy, surgery and radiation just might know her body a bit more than a plastic surgeon who is looking at it for the very first time; call it instead, excess fat

Needless to say, my mother will not be seeing that plastic surgeon again. 

I found that once I stopped wearing a bra entirely my underarm issues went away.  But it took a while.  I had actually forgotten I had had the problem until a few weeks ago when I attended an all-day photography lecture.  I wore a tight elastic cami under a peasant blouse.  It had a built in shelf bra.  By noon I found myself pulling uncomfortably on the underarm of my peasant blouse.  At the mid-afternoon break my right fingers were puffy and the cami was cutting into my underarm like a tourniquet.  I rushed to my car at the conclusion of the lecture and squirmed out of the cami immediately.  It took nearly 4 days before my underarm felt normal again. 

I had to shield my eyes from the blinding glare of the lightbulb over my head. 

I know that the most common treatment of lympedema is compression.  Compression sleeves, compression camisoles, etc.  I can’t help but wonder, though, if wearing nothing in conjunction with the lymphatic massage might be a better solution for my mother. 

I don’t mean to put this out there as a tried-and-true solution by any means.  I am hoping to access the great knowledge of the internet.  Please let me know what your experience has been.  What has worked for you.  Do you do massage?  How does it work for you? 

For those looking into Manual Lymphatic Drainage Massage there is a video on YouTube. 


Stage one of the new rack

July 15, 2009

(Crossposted from last week’s ThrowsLikeAGirl)

Today’s blog is not for the faint of heart or stomach, o fearless readers.   So finish your sandwich or latte and come back when it’s well digested.

You were warned. 

So Monday I went to the hospital and spent most of the day under anesthesia while my surgeons did the complete right mastectomy (pathology was clear on that by the way, yay!) and created a couple of  frankenboobs in their place.  Something I did this time around was look for as many pictures of my procedure as I could so I had a pretty good idea what to expect.  There is a thread on the Young Survival Coalition bulletin board that I highly recommend to people that is devoted to reconstruction.  Brave young women post anonymous pictures of themselves at various stages of their reconstruction so that people like me can get a better idea of what it really looks like.  I plan to post mine as well (though I forgot to take a “before” picture).  Paying it forward and all.  So basically my surgeons are very pleased with how the skin looks (I sort of think frankenlefty looks like a baseball.)  And based on the pictures I saw, my recon is right on schedule.

My chest feels pretty tight (ironically like I’m wearing a bra).  The expanders are in place and I’m pretty sure the plastic surgeon said frankenrighty is already 2/3 expanded.  I have a bazillion medicines to take and I have to admit it freaks me out a little.  I made the rookie mistake of taking 4 ibuprofen at the same time as 2 percocet.  My stomach quickly reprimanded me for that.  I have to give myself  a shot of blood thinner every day.  Which also freaks me out a bit.  Better that than clots though.

As usual, I felt like I received great care at our local hospital.  My room was huge.  Corner suite (or “isolation room” as they call it.)  Apparently word got out about what a scary patient I am.  Grins.  By Wednesday I was regularly walking laps around the cancer ward (I started calling it the Poop Loop.  Anyone who has had surgery can figure that one out.)  The hospital was testing their alarm system on Thursday.  Woo.  One time the alarm was Code Red, so I stuck my head out the door and asked the nurses if we were supposed to be walking out single file.  You can take the teacher out of the school and all…

So lots of people came to visit me at the hospital and I thank everybody who came by   I had been trying to figure out whether to put my compression sleeve back on and my physical therapist (thanks for visiting!) reminded me that I actually have 4 drains on that side right now and that my arm is probably at an all time low in terms of edema.  Which it was.  I could actually slip all the identification bands off my left arm without cutting them by Thursday.  

So I have 6 drains that I will probably have for a while.  Last time I only had 2 and I had them for weeks.  I still think it’s kind of weird that we have to drain and measure the liquid every day. 

So anyway, that’s what I’m doing, where I’ve been.  I am glad to be home.


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