Advocacy and lymphedema sleeves

Yesterday, Susan made a big announcement.  She is one of my cancer sisters, founder and co-contributor at Mothers with Cancer, blogger at Toddler Planet  and Women in Planetary Science and friend.  She is also an astonishing advocate for, well, everyone. 

Susan has  lymphedema in her arm as a result of having lymph nodes removed from under her arm during her mastectomy.  It’s a real issue.  Lymphedema causes swelling in the affected area due to the build up of lymphatic fluids.  Once swelling has occurred it can really only be reduced a certain percentage.  In other words, the area will never again return to normal size.  The trick is to keep the are from swelling in the first place.  This is where  LympheDIVAs come it.  They have taken a sterile, ugly medical appliance and made it beautiful:  the compression sleeve.  I can’t imagine what it would do to my self-image if  I had to wear something like this all day, every day (not to mention what it would do for my hot flashes!).

   

When you buy a sleeve from LympheDIVA, though, you can make it your own, match your outfits, show your personality, feel beautiful

 

   

Of course, there’s a price for beauty.  Isn’t there always?  And LympheDIVA sleeves aren’t cheap.  In fact, as Susan’s lymphedema Therapist pointed out to her, many women can’t afford to buy sleeves at all, which causes the tissue in their arms to harden.  Here’s part of an email Susan sent to me:

Last month, I was lying on the table having my arm worked on as my lymphedema therapist tried to reduce the swelling in my arm.  I try to zone out a little, as it’s not all that comfortable, but we got to talking about my pretty lymphedema sleeves, which you guys have seen me wear around town and at BlogHer. 

Apparently, I’ve been living with my head under a rock, as I was surprised to hear her say, “so many of my patients can’t afford lymphedema sleeves, and their arms are so much harder.  The tissue actually changes, and their arms are stiff or puffy no matter what I do.”

Can’t afford lymphedema sleeves?  Well of course that’s true, isn’t it, as they cost $100 and up for each arm, and it’s important to have two sets – one to wash, and one to wear.  I started rolling solutions around in my brain.

So, being the giving woman and problem-solver that Susan is, she began looking for programs to help those in need in her little corner of the world.  She found none.  By happenstance and good connections, she was introduced to a foundation, Crickett’s Answer, who agreed to work with LympheDIVA and donate some sleeves and gauntlets for women in need.  Next thing you know, $12,000 worth of  lymphedema sleeves are now available through Crickett’s Answer for these women!!!

This is awesome!  Wonderful!  Amazing!  And generous!  But here’s the part that floors me.  Susan, is not just a cancer survivor, she is a current cancer patient.  She has two small boys at home, she works for NASA, and she’s had a recurrence of  her Inflammatory Breast Cancer.  She mothered and worked and rested throughout the spring and summer while she also underwent chemotherapy and radiation for a regional recurrence.  Now, this week, while making numerous phone calls to foundations, organizations and businesses in order to help other women , she had a PET scan which revealed six small spots on her lungs

I am heartbroken.  For me and for Susan and her family.  For the world really.  Susan is one of the good ones.  She is tireless in her advocacy.  She is dedicated to her family and her work.  She is generous to a fault.  And she will more than likely die of breast cancer. 

The bright spot in this scenario is that Susan is creating a legacy of epic proportions.  (Yes I said “epic”  even if it is a banished word!  I’m a rebel like that.)  She is raising the bar.  She is a role model in every sense of the word.  She is that better person that makes me want to be one, too.

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S.N.A.F.U.

I caved today. 

I called my oncologist’s office for my CT Scan results. 

Normally, I’d wait until my appointment (which is still ten days away).  Normally I’d repeat the ‘no news is good news’ mantra over and over in my head until the urge to call disappeared.  Normally, I’d trust my knowledge of my own body and my intuition to give me a head’s up that there’s trouble somewhere inside me. 

Normally.

But March hasn’t been a normal month. 

First Sarah from SpruceHill told us about the recurrence of her breast cancer.  It started behind her implant and has spread.  She has metastatic disease now.  What does that mean?  Here is the National Cancer Institute’s answer:

    • What is metastasis, and how does it happen?
    • Metastasis means the spread of cancer. Cancer cells can break away from a primary tumor and enter the bloodstream or lymphatic system (the system that produces, stores, and carries the cells that fight infections). That is how cancer cells spread to other parts of the body.
    • When cancer cells spread and form a new tumor in a different organ, the new tumor is a metastatic tumor. The cells in the metastatic tumor come from the original tumor. This means, for example, that if breast cancer spreads to the lungs, the metastatic tumor in the lung is made up of cancerous breast cells (not lung cells). In this case, the disease in the lungs is metastatic breast cancer (not lung cancer). Under a microscope, metastatic breast cancer cells generally look the same as the cancer cells in the breast.

     

  • Now she is back in chemotherapy.  It has only been 26 months since her original diagnosis. 

    Then Susan (you may know her better as WhyMommy) from Toddler Planet had a bad scan while chasing down the origin of some weird pain in her arms, back and neck. And it’s cancer, too!  It’s a regional recurrence.  Just like it sounds, a regional recurrence happens, not necessarily in the breast, but in the general region – usually the lymph nodes or skin.

    Imaginis says a regional recurrence is rare.  Heh.  Why should Susan stop now.  I think she actually had three kinds of breast cancer at once. 

    “Regional breast cancer recurrences are rare, occurring in approximately 2% of all breast cancer cases. Most often, regional recurrence appears as a cancerous axillary (underarm) lymph node that was not removed during primary treatment. Treatment involves simply removing the cancerous node. Regional recurrence in the lymph nodes of the neck or above the collarbone usually indicates more aggressive cancers.”

    It’s no wonder I’ve been nervous waiting for my own CT Scan results.  In my experience these bad news things most often come in threes.  I’ve been waiting for the other shoe to drop.  When I found out that Sarah had no inkling her cancer was back, and Susan’s doctor didn’t call with the bad biopsy results but waited a week until her appointment to tell her the news… well, there went the only two rationales that keep me sane during the wait.  Add to that that I will have my boys with me for my appointment next week because it’s spring break and it became the perfect storm. 

    So I caved and I called my oncologist.  And I got my results.  Officially, there is no evidence of recurrence or metastasis in my CT Scan. 

    Whew!  I can breathe again!  I’ve broken the chain of bad scans and can get back to normal.  Or at least what ever passes for normal in a cancer survivor’s life. 

    Steaming

    Is it just me or has 2010 been brutal?  I haven’t talked to a family yet that hasn’t had life hand them anything but a steaming pile of doggy doo since January. 

    My Grammy has been to doctor after doctor trying to find out if she actually has a tumor in her brain that’s causing her to fall all the time or if she’s got something else wrong instead.  Meanwhile my 81 year old Grandpa Jess, who had a massive stroke a year ago at Christmas, has developed pneumonia.  Did I mention my Grammy is his primary caregiver?  And just to add insult to injury, my Aunt who helps my Grandfolks out on a daily basis was given scabies by her dog who likes to play with the neighbor’s chickens. 

    And that’s just my genetic family.  My other families haven’t gone unscathed…

    My bff and her family are going through a traumatic divorce and the unexpected death of a beloved family friend.   

    A girlfriend of mine was brutally beaten by a mutual guy friend who turned out to be no one I want to be friends with. 

    Worst of all, my Mothers With Cancer family has not gone unscathed.  Sarah from Spruce Hill has suffered a recurrence of her breast cancer.  It’s metastasized to her chest wall, hip and lungs.  Now, this morning I find out that Toddler Planet’s Susan just got the results of her latest scan.  Not good.  She has some lymph nodes on her scan making like light bulbs… just calling attention to themselves.  It sucks when you have to hope for a horrible, terrible, no good, very bad infection causing problems because the other options are completely unacceptable. 

    Superstitious as it is, I’ve always known these types of things to come in threes.  So now I find myself holding my breath waiting for the other recurrence shoe to drop.  And me with my own scans coming up this month…

    I’ve had a heart-to-heart with God.  I know he has a plan.  I know “that all things work together for good to them that love God”.  But I am struggling mightily with his means just now. 

    Deep breath.   I’ve been tossing around symbolic apparel ideas for the Avon Walk for Breast Cancer in July.  All of this has led me to a decision.  I am now shopping for some pink boot covers.   The kind you wear over your own shoes with your Halloween costume.  They will be my Kick Cancer’s Ass Boots!  After all, boots are made for walking!!!!!

    It’s the least I can do.  Literally.

    Walk the walk

    I’m going to walk.  I’ve been doing it most of my life so how hard can it really be?  I walk on my breaks at work (when I remember to take them).  I walk with the kids if they beg me long enough.  I walk across parking lots on my way to one store or another.  Easy peasy. 

    On July 10th and 11th I’ll be walking with a purpose.  I’ll be in San Francisco walking the walk… the Avon Walk for Breast Cancer!  It’s a mere 39 miles across the City By The Bay.  Thirty.  Nine.  You heard me!  Ack!!!!!

    I am excited to get started!  I’m going to train!  I’m going to work hard.  I’m going to raise tons of money for a great cause!!!  I’m going to do my part to ensure that no one else has to lose their parts ever again!!!! 

    I hope I can make it.  I hope I can raise enough money.  $1800 is a lot of money!  I’m thinking of forming a team.  Maybe Team Mothers with Cancer or Team Class of 84!  Maybe something else entirely. 

    Will you walk with me?  Will you help fight the good fight?  Will you walk for Andrea Collins-Smith, Cancer Visa, and One Mother With Cancer who lost their battles against the beast?  Will you donate for the many, many moms over at Mothers With Cancer that have been victimized by breast cancer? 

    Will you walk for me

    Benefit or Burden

    I love October.  Suddenly the bright spotlight of the media is shown on stories that normally don’t rate for their lack of warm fuzziness.

    Take the Welsh’s from Ohio, for instance…  Both wife and husband are in their 60s and are undergoing Breast Cancer treatment.  Both. Of. Them. 

    This is a subject near and dear to my heart as my boys have a significantly increased risk of developing breast cancer because I and my mother both carry the BRCA2 genetic mutation.  By significantly, I mean about 80 times that of other men!!!  This equates to about a 1 in 14 lifetime chance of breast cancer.  BRCA2 also increases the risk of other cancers: prostate, pancreatic and stomach cancers as well as melanoma.  Did they hit the genetic jackpot or what!? The BRCA2 gene DOUBLES a man’s chances of developing prostate cancer and melanoma!  My boys have a 1 in 3 chance of prostate cancer before they turn 65!  All of these cancers will rear their ugly heads earlier than typical in a BRCA2 man.

    I have long been an advocate of Knowledge Is Power!  It’s only when we hide medical histories and facts in the dark because of embarrassment or fear that these awful diseases get the upper hand.  That being said, knowing my boys could be victims of genetic Russian Roulette, I have a decision to make.  Should I get them genetically tested?

    My quandary is this:  genetic testing would arm all of us with the power of knowledge.  We could gird our sons against cancer with more frequent screenings at much younger ages.  Even enroll them in test programs aimed at prevention.  However, by equipping ourselves with this information we also make the results available to insurance companies.  If I test the boys as children in order to afford them the best possible chance at survival, do I label them with a giant red flag that will prevent them from ever getting health insurance?  Will it cause them employment issues in the future?

    It’s such a tight rope to walk; future benefit or burden?  What would you do?

    Cross posted to Mothers With Cancer

    Putting on the Pink

    Ironically, Danny first refused to nurse on my right breast in October 2005– my first sign of cancer.  It’s appropriate that I ended my breast cancer treatments nearly three years ago during Breast Cancer Awareness Month.

    It took me only five weeks to realize that something was wrong with my body. The last normal weeks of my life.  It took another four weeks for a breast exam, mammogram, ultrasound, surgical appointments, fine needle aspiration and finally, a core needle biopsy, before my diagnosis on December 22.  Merry Christmas.  Nine weeks.  And life is never the same again.  Nine. Short. Weeks. And every month since has been Breast Cancer Awareness Month.

    So I’m putting on the pink for the month of October.  I hope it helps even one woman do a self-exam!

    In the meantime, however, I have a website to share with you.  It’s called The Urban Dictionary.  It is a dictionary of slang.  Like Wikipedia, Urban Dictionary is publicly defined site.  As a parent I find this site extremely useful.  As an ex-kid I find it irresistibly entertaining!  In that light I offer you a few of my recently found favorite slang words.  See if you can figure out which one I submitted…

     Cybercondriac:  An individual that reads symptoms of illnesses on the net and begins to believe they’re sick.

    Half your age plus seven:  A dividing-line / rule, whereby one may not make a Romantic/erotic/sexual move toward someone who is not at least half one’s age, plus seven more years.  Ha!  My co-worker is forever quoting this rule.  He swears that since he is 30 it is ok for him to date women that are 22.  Makes perfect sense until you reverse it.  By this calculation at 43 I should be able to date a man twice my age less 7 years.  That’s 72 years old!!!!! Gah!

    Restless Lip Syndrom:  When a person keeps interrupting a conversation and can’t keep their mouth shut.  Hee…  I know a few who suffer from this.


    Sticker Paralysis:  The effect caused by having a really awesome sticker and no appropriate place to use it. General symptoms include keeping the sticker in a drawer and never actually using it. Sometimes resulting in affixation remorse.

    Nipple Envy:  What a woman feels when she sees another woman’s nipple erection and hasn’t completed her post-mastectomy reconstruction.  I so suffer from this!!!!!

    Pisshap:  A mishap involving urine, usually after a mass amount of alcohol has been consumed.  This one has worked its way into my every day conversation!!!!!  And that’s kind of sad…

    Well, that was disconcerting…

    I just finished watching an episode of Mystery Diagnosis. Not my usual TV fare but this one was about Inflammatory Breast Cancer, or as they called it: “The Breasts That Changed Color.”

    The show told the story of Amanda Nixon who at 27 years young found her breast hardening and changing colors shortly after breast reduction surgery. This is a new twist on the typical IBC tale. The vast majority of IBC patients are either pregnant or nursing when misdiagnosed with mastitis.
    Four years later Amanda is cancer-free and very active in the fight against IBC. She has beaten the odds… so far.

    I’ve never really heard hard statistics on the IBC mortality rate. I just knew it was very high. Well, tonight I heard the official stats. A mere 40% of IBC victims are alive 5 years after diagnosis. Only 30% by 10 years. !!!!!!!!!!!!!!!!!!!

    Here are some more numbers for you. One in eight women will be diagnosed with breast cancer in their lifetime. Of those women, one in ten will be under age 40. Cancer in younger women is typically more aggressive than other cancers.

    Although those numbers are frightening, as an IBC survivor I have them embedded in my psyche. What I found disconcerting is that there is not standardized triage for breast cancer patients.

    My oncologist was all over the IBC diagnosis. Even when I was in denial. I foolishly decided I didn’t have IBC because there was no clinical proof. Like I can just decide that something is or isn’t so and have the world fall into line. It’s laughable, really. Or maybe just naive.

    Amanda Nixon’s doctor had no idea that the eggplant colored breast he was looking at was IBC. Don’t they have a checklist or something???? I mean, really. Anyone with internet access can Google “breast discoloration” and find literally hundreds of thousands of sights referencing Inflammatory Breast Cancer!

    My own mother was sent to a surgeon for a lumpectomy but NEVER REFERRED TO AN ONCOLOGIST. At least not until I badgered her and she badgered the surgeon and she finally fired him for dragging his feet on the referral. Gee, it turns out she is BRCA 2 positive just. like. me. Seeing an oncologist changed her entire course of treatment.

    WHY isn’t every woman diagnosed with Breast Cancer referred to an oncologist – even if it’s just for an evaluation?

    WHY isn’t there an intake “symptom checklist” for Breast Cancer patients that can be fed into a database or something?

    WHY, in the age of the internet, is there such a wide range of knowledge, awareness and approach to Inflammatory Breast Cancer? For cripes sake, some doctors are still doing surgery first before chemo!!!!

    And why are some of us blessed enough to be here three, four, even ten years later when others don’t last out the year?

    Cross posted to Mothers With Cancer