Tag Archive | axillary lymph node dissection

I’m Sorry… An Open Letter to My Followers

 

breast cancer thirties 30s 30's lymph node nodes axillary node dissection bilateral mastectomy illness port powerport needle anesthesia lymphedema

Hello Dear Readers,

I can’t believe it has been so long since my last post.  I thought about writing to you.  Every. Day.  I began posts that I never finished.  I had things to tell you.  I took a notebook to my appointments and filled page after page with thoughts meant for you over these long weeks months (gasp!) apart.  But I just couldn’t.  Share them.  Here.

It’s difficult for me to admit that things have been just plain crappy.  I’ve had infection after infection (pneumonia, kidney, cellulitis).  Super antibiotic after super antibiotic.  And I have zero energy.  Just getting out of bed each day has been such a struggle.

I’m beginning to think that if I don’t tell myself repeatedly on a morning that I don’t have a choice, I may not be able do it.  I am no stranger to forcing my body and mind to push on when they are begging me to just rest.  But pleading is being replaced more and more by screaming on the part of my exhausted body and mind.  And sometimes I am met with absolute refusal.  There are times during the day, or especially in the early to late evening, when I am just hit with insurmountable fatigue and I must stop, wherever I am, and lie down.

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This was happening before I was diagnosed.  In the months before I heard the words, “Everything we biopsied was malignant,” I was struck with fatigue like this.  The kind of fatigue that stops you in your tracks.  The kind of fatigue that lets you know that if you don’t find a place to lie down and sleep immediately, your body will find one for you, be it a bench or a chair or a carpet or a patch of grass.  Your body doesn’t care about the where.  It will drop you anywhere.

This happens about once or twice a day now.  It’s usually after I’ve been up and out for appointments, etc.  By the time the kids get home, have dinner, and I help with homework, it has already been creeping up on me.  And then I just hit a wall and cannot do “it” anymore — whatever “it” may be.  Not for another minute.  And I go to the couch, drop down, and cannot move again.  It takes a great deal of cajoling to get my body to take me upstairs for bed.  Brushing my teeth seems an insurmountable task.  I just need to crawl into bed after the exhausting trip up the stairs to my room, and fall asleep.

But it is happening earlier in the day, too.  A few days ago, I went to an appointment in the morning and had to lie down in the car afterward and cancel my afternoon appointment.  And when I finally made it home, I had to lie down and couldn’t move again until the kids came home and I convinced my body that it no longer had the luxury of resting time.  But after dinner, I had to lie down again.

I don’t know if I’ve told you this before, but this is not normal for me.  I can usually push, push, push, until everything is taken care of, everyone is in bed, the day is done.  And then I will lay awake for hours, waiting for sleep to come.  And it eventually will, but sometimes not until the birds are beginning to stir outside and I know that the faint early morning light will soon creep through my velvety merlot curtains.  And just a few hours later, it will be time to get up with the kids and for the school routine to begin before I head out the door myself.

Well, that “normal” is long gone…  This hasn’t been happening for months now.  Now, when I hit that metaphorical wall, I will drift in and out of sleep.  Sometimes just until the dead of night.  Other times it is until the dawn begins to break.  But I just can’t stay awake without a major effort.

I do wake frequently.

I was experiencing night sweats “before.”  During the worst of the chemos.  And then ever since my radical hysterectomy and salpingo-oopherectomy two years ago.  But the hot flashes and night sweats that spiked when I had to have my my surgery two years ago had begun to wane (well, somewhat, anyway — when I say “wane,” what I really mean is slip down to a more manageable number/degree, if there is such a thing) about a year ago.

And now… They’ve ramped up again with a vengeance and have become far more intense and overwhelming than what I had been accustomed to, even when they were at their worst.  They have been even more overwhelming and exhausting in the past six months than they were in the first year without my ovaries.  I am waking about three times a night now just completely drenched.   So much so that I need to change whatever I’m wearing each time.  And it doesn’t matter what I’m wearing.  Flannel head-to-toe pajamas — drenched.  A soft robe — drenched.  A cozy sweatshirt and sweatpants — drenched.  Yoga pants and a light top — drenched.  A thin t-shirt and undies — drenched.  Just the undies — drenched.  It really doesn’t matter.  I will often lay a blanket down in the bed to cover the soaked bedding and to give myself a fresh start for the night.  And then I’ll do this maybe twice more per night after each soaking.

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I’ve tried everything I can think of to curb the frequency or intensity of the night sweats, but nothing helps.

And then every day I find myself breaking out into cold sweats.  My face is dripping with sweat.  Drops of sweat roll down my legs and arms.  And then I find myself shivering and needing to change my clothes because I am so, so wet.

Sure, this happened before.  To a degree.  Surgical menopause at 35 will do that to you.  Or at least that’s what it did to me.  But this, this is so much worse.  It doesn’t feel normal.  So far from it.

It’s concerning and exhausting, to say the least.   I’m hoping (I think?) this increase in frequency and intensity might have something to do with the fevers I’ve been experiencing on a now regular basis over the past six months?  But then, what is causing the fevers?  Sure, I’ve had lots of infections.  But I’ve been on antibiotics consistently, with breaks of only a couple of days, if at all, between.  So it’s unclear as to whether the fevers are linked to the infections.

Sometimes I’m glad I’m too tired to expend the mental energy to think about it!

Well, this has become more of an explanation post than an apology letter.  But I began intent upon focusing on the apology.  Because I do owe you an apology.  You’ve stood by me, reading, commenting, emailing, or sending messages in some other way.  And I haven’t been the best with the communication.  Okay, I’ve been downright shitty, really.  But it is not because I haven’t thought of you.

It is not because I haven’t appreciated you.

It is not because I haven’t wanted to reach out to you.

It is just because.

I wish I could say or do better than this.  But I will try my best to give you what I can, when I can.  And I sincerely hope you’ll continue to reach out to me as you have been.  Because it has meant so much to me.

Even when it doesn’t seem like it, I am listening.  And I am grateful to know that you’ve thought of me, even if it is just a fleeting thought.   Because sometimes that makes all the difference in the world…

Thank you…

p.s.  Because you know I love to stick photos wherever I can, I’m adding a few pictures that illustrate (at least I think so!) the theme of The Daily Post‘s Weekly Photo Challenge topic for this week.  This week’s challenge asks participants to show readers a “Room” or “Rooms.”  Here are a couple of rooms other than the hospital and Cancer Center rooms above…

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The rooms below are from a visit to “Give Kids the World” with my boys’ best friend and his family.

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B has Duchenne Muscular Dystrophy and was granted his “wish” by the Make A Wish Foundation and “Give Kids the World” back when he and my twins were in pre-school.

We were fortunate to be able to return to “Give Kids the World” with B and his family recently.  I am good friends with B’s mom.  The boys and B’s brother and sister all get along so well.  And we like B’s dad, too.  So it was wonderful to have some special time with B and his whole family.

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These are a few photos from a visit to a series of special rooms on the campus where each child leaves a shiny gold star containing his/her wish behind…  The ceilings were covered with wishes.  What a moving experience.

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Okay, off to bed.  Thanks so much for visiting.  I hope life is being kind to you…

My warmest wishes…

 

Lone Jellyfish, Candy Apple Redhead, Happy Holidays, and a Weekly Photo Challenge

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In a tank full of jellyfish, we watched as this lone jelly moved gracefully away from the others

It has been far too long, but I am popping in to wish you all a very happy holiday season.  Merry Christmas, Happy Hanukkah, Happy Kwanzaa, or warmest wishes for whatever holiday you might celebrate.

The boys and I celebrated a lovely (but exhausting!) Christmas together.  They both made special cards and scoured the house and found items to wrap up and place under the tree.  Picture that scene from one of my favorite Christmas movies, National Lampoon’s Christmas Vacation.  [If you haven’t seen the movie, you should.  My sister and I loved it so much as kids that we watched it more times than I’d care to admit.  As a result, we can recite the script verbatim, complete with accents and inflection, also something I only admit sparingly.]  Aunt Edna arrives at Clark’s house with two gifts.  One box is leaking and the other is meowing.  Old Aunt Edna doesn’t have much money (and is a bit senile) but still wants to give gifts, so she has wrapped up jell-o and her cat.

Thankfully the boys did not giftwrap the dogs this year.  [Yes, they wrapped the little one up last year.  She did NOT like it.]  They gave me chocolates from the cupboard, one of my favorite winter scarves (which was a relief because I thought I had lost it, but it was under the tree the whole time!), and a few other special items they found.

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“One of these birds is not like the others”
The photo doesn’t do the vibrant red hue of this red-crested cardinal justice. What a beautiful bird!  [What is a photo of birds doing in this post?  Trust me, there is a reason.  Read on…]

They gave their dad some things we were able to procure together, like a nice Columbia fleece and some of his favorite candy.  They also made homemade ornaments with their photos on them and special cards to accompany their gifts.  And they wrapped up a handheld showerhead we had gotten a few years ago for their bathroom.  Their current cheap showerhead leaks so much that their is minimal water pressure when they shower.  It takes them forever to rinse their hair.  So we acquired the new one from our struggling kitchen and bath supply business.  It’s lower quality than what we normally sell, so we decided to keep it for ourselves and figured it should solve the boys’ bathroom dilemma.

The only problem is that my husband hasn’t installed this unopened self-proclaimed “easy installation” faucet in the three years it has been sitting next to their bathroom door.  You are probably wondering why I haven’t just done it myself.  Believe me, the thought has crossed my mind a thousand times.  But I can’t manage it because I can’t lift my arms over my head thanks to the bilateral mastectomy & axillary lymph node dissection surgeries.  [Of course it would have helped to have continued my intense physical therapy sessions instead of failing to show up one day because I was too tired.  In my defense, I did call them to tell them I would reschedule when I felt better.  That was 2 years ago, though.  Woops!]

The boys thought that if they wrapped up their new showerhead and some of the other home improvement items that have been gathering dust, the jobs would get done.   I even caught them wrapping the curtain rods from their bedroom windows!  I had been really sick for months when we decided to remove the curtains, rods and their anchors so we could paint the boys’ room (ocean colors with freehand waves and plans for ocean creatures).  I had just started the painting when I had to go in for biopsies on both breasts and lymph nodes. The biopsies confirmed the doctor’s cancer diagnosis 24 hours later, and the diagnosis and more biopsies and scans were immediately followed by my first lymph node and powerport implantation surgery and intense chemo until I was ready for the mastectomy and full-blown lymph node removal surgery 5 months later.

Needless to say, I could not reinstall the curtain rods because of the “not being able to raise my arms thing,” so the twins still have no curtains up in their room.  Part of me thought, “good for them for wrapping up their curtain rods!”  But they know their father all too well.  They said they were sure they would have to wrap all of those things up again next year because (I’ll paraphrase, but it was something like this) “Dad doesn’t care about our curtains and showerhead and smoke alarm batteries and blah blah blah… because they are not the internet or a video game.”

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I know, I know. You are saying, “WTF, another bird? What does this picture have to do with the holidays?”

We had a quiet Christmas Eve.  I worked on finishing Christmas cards between appointments.  I’d been up until 3 or 4 a.m. for the few nights before, writing personal notes on the cards (and reapplying for health insurance).  I mailed a stack each day for those 3 days.  So when I was finished with my appointments at the hospital, my husband and the boys came to get me and it was a relief to stop at the post office to mail out the last stack of cards.

I was glad to be heading home after a long day.  I was tired and had a lengthy to-do list that had to be finished before Christmas the next day.  But my husband’s bad mood won out and when something set him off, he decided to punish us by parking the car and refusing to take us home or to relinquish the keys.  We sat for over an hour like this.  Luckily, I keep warm blankets in the car (it’s really a minivan) during the winter, so I gave the boys a couple each and they alternated reading and playing DS (handheld Nintendo games), while I worked on the Christmas cards that didn’t need to be mailed and finished my insurance paperwork.  It was 17 degree F and snowing but I dared not challenge him too much because I’ve learned that it isn’t worth it when he is in one of these moods.  And I honestly didn’t think he would keep it up for that long.

We sat until the kids and I couldn’t wait to go to the bathroom.  So the boys and I got out of the car and walked to a nearby grocery store to use their restroom.  When we got back in the car, the boys insisted that we go home.  We were going to Christmas Eve Mass at 7:30 (which they were not looking forward to earlier in the day, but were now begging to go home for) and we were still 30 minutes from home and had to eat dinner and get ready to go.  So he reluctantly drove us home.

We barely made it home to eat, and I didn’t have time to change out of my wet clothes (a byproduct of a day full of hot flashes — a gift from my hysterectomy) and then ended up getting to church late.  For as often as we go to church (not often at all!), I don’t think we should walk in late.  We hadn’t been in weeks and filing in while everyone was seated and the priest was watching us walk in the door was not a good way to return.  But the service was nice.  And we ran into my aunt and uncle (and my cousin and her boyfriend), so that was a good surprise.

Christmas was nice.  I was up until about 4 writing long notes in books and special cards for the boys and helping Santa get things ready (he left notes for the boys and personalized their stockings, etc.).  Comet even left a note and explained how he was sorry for leaving a bit of a mess on the front step — he left some chewed up carrots from the plate we left out for the reindeer and some droppings that looked a lot like raisins that had been soaked in warm water to plump them up.  [Yep, reindeer poop.  Since the kids had been questioning the Santa thing all of a sudden, the big guy had to step the proof of his existence up this year!]

And then the boys were up and ready for Christmas morning at 6:30.  Thanks to the kindness of a family at church who “adopted” us, and to the generosity of the boys’ teachers and school, we had gifts to put under the tree.  There were even gifts for me, including several giant packs of paper towel, toilet paper, Lysol wipes, and laundry detergent.  Such amazing angels who knew exactly what we needed.  Despite the events of the day before (and so many days before it), I couldn’t help but feel thankful for the good people in my life.  Such a stark contrast to my marriage are the relationships I have with other people.  Thank goodness, or I think I would have given up a long time ago.

We rounded out the day by going to my aunt and uncle’s to spend the afternoon with my family.  We hardly ever get to see them, so it was good to be together.  And then we moved on to Christmas dinner and dessert with my husband’s mom and dad.  It was a busy day and we didn’t get home until late, but it was really nice.  And I was glad we were able to have our own little Christmas in the morning and then have time for both sides of the family the rest of the day, so Christmas felt complete.  And I know the boys enjoyed the time spent with family.  They fell asleep on the way home, though they were up again at 6 a.m. to build their new Lego sets!

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Hmm, I was hoping to have this post serve double duty as a photo challenge post, but this week’s challenge topic is “Joy” and I think this post is just not joyful enough to qualify.  So I will improvise.   While I missed The Daily Post’s Weekly Photo Challenge for last week, I might as well show you the photos I would have designated for that post.

Titled “One,” the challenge asked that we show:

“photos that focus on one thing.  Maybe you’ve got a stark photo of a single tree silhouetted against the setting sun, or a lone sandpiper wandering the beach as waves crash.  Perhaps you’ve caught your mother sitting by herself in a moment of quiet contemplation.  Maybe you saw a basket of wriggling puppies, and got a photo with a single fuzzy face in focus.”

So now you see why I have a photo of a lone jellyfish and two oddly placed bird photos here.  Thanks for bearing with me!

Here’s one more:

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And I promise to come back with the JOY photos from this week’s challenge.  Full disclosure — I’ll tell you that I’m in a “Tell it like it is” frame of mind so I can’t promise that the text will be overtly joyful.  But I can promise you honesty and I hope that’s good enough!

Until then, thank you for reading and for giving me an opportunity to share my thoughts, light and dark.

My warmest wishes and appreciation for you all…

p.s.  If you would like to participate in The Daily Post’s Weekly Photo Challenge, just click here for a list of challenges or here for the current challenge, “Joy.”

Weekly Photo Challenge: An Eerie Feeling — Is it Cancer?

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When I saw the Weekly Photo Challenge for this week — Eerie — my first thoughts weren’t of Halloween costumes or fake blood or ghouls or goblins.  No, my first thoughts were of the sore spot and the “thickening” in my chest in an area that cancer once called home.

Since my bilateral mastectomy three years ago, I have been checking the area often enough. Monthly, I suppose?  Maybe less?  It’s often enough that I would notice a change.

5 days post mastectomy and axillary lymph node dissection for stage 3c breast cancer

While I rarely have trouble with my right side since the surgery, my left side has been a different story. Because of the depth/extent of my left mastectomy and the resulting nerve damage, I have been plagued with a range of unpleasant feelings, from numbness, tingling, itchiness and dull pain, to searing pain and what they term “phantom pain.”

You may have heard of phantom pain before.  Maybe you’ve known someone who has had a limb amputated.  Or you’ve watched an interview with a war veteran who lost an arm or a leg.  Or you follow Grey’s Anatomy and saw the episodes when Arizona was struggling after losing her leg in the plane crash. Or maybe you’ve never heard of it and just think it sounds kind of eerie.

Well, it is kind of eerie.  And not just because of its name.

“Sometimes after a body part has been amputated, it feels as if that part is still there. This is called phantom sensation. It…is not pain, but is a “tingly,” cramping, or itching feeling where the missing part used to be.

[Phantom pain, on the other hand, is painful.]  The pain feels as if it is in the part that is missing. Phantom pain…may feel like a burning, crushing, or stabbing sensation.”  [UPMC.com]

This is a roundabout way of explaining to you that despite the wide range of sensations I’ve experienced on the left side, none of these feelings have ever prompted me to pick up the phone and call the doctor because I’ve always accepted them as my new normal.

But what I’ve been experiencing recently does not feel like the pain or other sensations I’ve become accustomed to in the past three years.  It feels different.  It feels like the pain I felt before my surgery. Like the pain I was experiencing in my breast when my cancer diagnosis came 3 1/2 years ago.

Now maybe you are thinking that doesn’t really mean anything.  I don’t even have that (or any) breast anymore.  I was thinking this, too.  But then I reached under my shirt and felt the area.  In fact, I’ve repeatedly “checked” the area over the past week.

And it feels different.  Like a thickened “something.”

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At first I thought maybe it was swelling.  Swelling has been an issue for me since I received my first intervention — months of dose dense chemo meant to make my inoperable cancer operable.  When I was finally ready for surgery, it was a different kind of swelling.  Swelling in my arms from lymphedema.  And despite having surgical drains placed to collect excess fluid/blood that can accumulated following the surgery, in the space where the tumor was, there was a significant amount of swelling in my chest/underarm/shoulder area. While surgical drains are very common with this type of surgery, leaving them in for many weeks is not typical.  But there was so much fluid that it was necessary. Even still, I developed large seromas [a seroma is a collection of serous fluid in the dead space of post-mastectomy skin flap, axilla or breast] that necessitated trips to the surgeon’s office every 2-3 days so he could insert a long, wide needle and manually drain the fluid.

But it’s been a while since I’ve had a seroma or swelling in this particular area of my chest.  And it does not feel like swelling.  In fact, it doesn’t feel anything like what I’ve become accustomed to.

Normally when I touch the area where my left breast used to be, since the tissue and muscle are missing, I feel rib bones (or the spaces between them) through a thin layer of skin.

It’s odd, really, to go from feeling the squishy, rounded softness of your breasts, to feeling the hard, unforgiving rigidity of bone.

It’s a difficult adjustment to make.

And though you may con your brain into accepting the new “normal” day in and day out, your fingers never really forget.  Touching the area where your breast used to be is still just as jarring for your fingertips as it was in the beginning.

So when something is different…less chiseled…more flexible…softer, your fingers notice.

So it is easy to recognize when something is different or awry.

Maybe it’s nothing.  Maybe it will be fine.  It’s probably nothing.  It will probably be fine.  I haven’t even mentioned it to anyone in my life other than “you” because I’m almost sure it will be okay.

But the eerie feeling I had this past week each time my fingers were drawn to my chest was enough of an incentive enough for me to call the office of the breast specialist who diagnosed my cancer.  And it was enough to make me accept (and not cancel) an appointment for 7:30 this morning so I can find out for sure.

I will leave you with my “eerie” photos…

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Even more eerie than fake blood is real blood… These are my mastectomy drains.

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Kevin looks for ghosts amid the cobwebs this Halloween

As always, thank you for being here.  And if you would like to participate in The Daily Post‘s Weekly Photo Challenge, just click on this link.

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National No Bra Day & Breast Cancer Awareness Month — OR — Please Put that Pink Can of Soup Down & Put Your Bra Back On!

My “Where I’ve Been” post is still forthcoming, but in the meantime, I realize that I missed the opportunity to post on “National No Bra Day.”

I am reposting an article I wrote back on the unofficial No Bra Day during Pinktober (October — Breast Cancer Awareness Month).  The “official” fake holiday was actually yesterday, July 9th.

I see that you left a number of lovely comments on my M.I.A. post.  I will respond, but wanted to say “thank you” from the bottom of my heart in the meantime.  I am also looking forward to catching up with your blogs and all I have missed in the past couple of weeks.

My warmest thoughts & thanks are with you all…

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Peter Griffin / Family Guy "What Grinds My Gears" Episode

Peter Griffin / Family Guy “What Grinds My Gears” Episode

I am not a ranter by any means and I have been pretty quiet about “Pinktober” and what has come to be known as “Pinkwashing” in breast cancer circles, but seeing October 13th advertised as “National No Bra Day” and as a “fun” way to support people with breast cancer has pushed me over the edge.

Are you kidding me?  How on earth could a day where girls and women are encouraged to walk around with their nipples poking through their shirts be “supportive” for women who are living with or who have died from breast cancer, or who have managed to ‘complete’ the arduous treatments and disfiguring surgeries required to put them into remission?

I think the answer is simple.  It is not.

Like so many women–and men–who have faced this disease, I have lost my breasts to cancer.  Though I had a terrific surgeon, it was a physically and emotionally disfiguring surgery.

The cancer had gone so deep and was so extensive on my left side that it was at first inoperable.  Even after months of chemo, my surgeon took as much tissue and skin as possible and went deep into my axilla (underarm area).  The cancer had metastasized to my lymph nodes and had invaded them to such a degree that they broke open to allow the cancer cells to go beyond the walls of the nodes.  Because of how invasive the surgery was and of how much nerve damage, etc. resulted, it was not only extremely painful then, but continues to be a source of pain and phantom sensations that affect my entire upper torso even today.

I required over a year of physical therapy just to be able to raise my arms again and I still don’t have full function or range of motion.  And, because of pain, swelling, conspicuous compression sleeves and gloves, I am constantly reminded of the lymphedema that resulted from the surgery and loss of my lymph nodes.  Oh, and the life-threatening infections that forced a couple of hospitalizations and four months of massive doses of antibiotics this summer (almost 2 years after my original surgery), are also a little reminder of some of the things that the bilateral mastectomy and lymph node surgeries have left me with.  And there is so much more…

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So the thought of seeing bra-less women flaunting two body parts that I have lost to cancer — more than I already see this on a regular day — does not feel all that supportive.  In fact, it feels quite the opposite.

I consider myself to be an open-minded person.  I do my best not to judge others or their beliefs and ideals.  I have a pretty good sense of humor and am usually the first to poke fun at myself.  And I make light of breast cancer and my struggles, treatments and their side effects, lack of breasts, fear of death, etc. fairly frequently.  It is how I cope.  But, given what I have been through, I think I have earned the right to joke and make light of how this terrible disease has affected me.  But if you haven’t been there or taken care of someone who has been there, then you should think twice before you publicize a day that jokes about putting the first body parts we usually lose to this disease “out there” on display even more conspicuously and then labeling it as an activity that helps our ’cause’.

We live in a society that makes a huge hoopla about breast cancer while at the very same time trivializing the seriousness of the disease.  How can we be so contradictory?

While I am beyond thrilled that breast cancer is no longer a taboo issue and that people are talking about it, the commercialism has gotten out of hand.  There is nothing pink and rosy about breast cancer, yet it has been pink-washed to death.  It is a serious disease that kills.

And while I do think we need more awareness and education (about metastatic disease, about how young women CAN develop breast cancer, about how women (young and old) DO die from this disease, about the importance of research, etc.), I don’t think we need the kind of awareness that buying a jar of salsa with a pink ribbon on it brings.  While I hardly ever see “awareness” products addressing the topics above, I can’t go anywhere without seeing pink products.  Heck, I just have to look out of my front window to see giant pink garbage totes.  Pink-Cart---cut

The stores are filled with pink as companies try to make a buck off breast cancer.  If you look carefully at these products, you’ll find that some of them don’t even donate a cent to breast cancer awareness, support, research, etc.  And oftentimes those that do make a very minimal donation–and not always to organizations/programs where the money is well spent.

What is most unfortunate is that well-meaning people are willing to buy pink products, even pay a little extra, because they think they are helping to do something to “cure” breast cancer or to provide “hope” to breast cancer patients.  Why is this sad?  Because those dollars spent on pink flowers, pink shirts, or a pink box of crackers or spaghetti sauce could be going to research, our only real “hope” of beating this horrible disease.

So please put your bra back on, put down those pink garbage bags (unless you really like pink that much!), that pink “awareness” pepper spray keychain, and that pink breast cancer “awareness” vibrator and dildo (yes, I’m blushing and yes, these are real things that their merchandisers say will “help you raise breast cancer awareness” — though they are shipped discretely in plain, unmarked boxes so no one knows what you purchased) and send a few dollars to an organization that devotes their fundraising dollars to research.  You just have to do a bit of homework or read the labels on those pink items to see where your money is actually going.  Or, if you don’t like homework, here are a couple of great ones:

StandUp2Cancer.org: Our mission is to fund collaborative, translational cancer research to bring treatments from the bench to the bedside faster, and save lives now.  Since Stand Up To Cancer was founded in May 2008, we have granted $161 Million Dollars to ten Dream Teams of scientists and researchers, one international translational research team and 26 high-risk, high-reward Innovative Research Grants.  100% of public funds go directly into research grants. A portion of the funds that are raised from major donations and third-party fundraising go towards administrative expenses and overhead.

Metavivor.org:  From support groups to funding vital research, our programs sustain the power of hope.  Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVERY dollar count as we work with researchers to regain longevity with quality of life.

…or consider a group that helps actual cancer patients and their families cope with their illness.  For example:

CancerIsAJerk.org  — This is a charity my dear friend jme set up to help families touched by cancer.  You can make a financial donation  or  if you’d like to have a tangible something to wear to show your support, you can purchase a “Cancer Is a Jerk” t-shirts with all proceeds going to help actual families touched by cancer.  You can also contact jme through the charity if you’d like to sell shirts as a fundraiser with all proceeds going to benefit cancer family applicants in general OR designate a specific family of your choosing.

And don’t underestimate the value of local organizations.  My local Breast Cancer Coalition is a perfect example.  The Breast Cancer Coalition of Rochester‘s mission is to make the eradication of breast cancer a priority through education and advocacy; to empower women and men to participate fully in decisions relating to breast cancer; to provide support to those coping with a breast cancer diagnosis; and to focus research into the causes, prevention, treatment and cure of breast cancer.

Also local for me is The Karen Carson Crane Foundation.  Founded by Karen’s siblings after she died of breast cancer, the mission of the Karen Carson Crane Foundation (“the KCC Foundation”) is to provide support and financial assistance for individuals affected by breast cancer; to encourage breast cancer patients to have the strength, courage and passion to overcome their disease; to support local organizations that assist breast cancer patients; and to donate a portion of its fundraising dollars to organizations that research and promote alternative cancer treatment methods.  

There are many other great organizations and groups out there — these are just a few.

And if you can’t help with a financial donation, consider volunteering your time or talents.  Perhaps to local cancer patients — bringing a meal or knitting a chemo cap or scarf, or sending a cozy blanket are examples of ways to show your support.   I remember when a small box of craft supplies was left on my doorstep when I was first going through chemo — what a gift that was — my kids loved it and it kept them occupied for a little while when I was really ill!  Or consider volunteering at a local cancer center or for a local American Cancer Society chapter.  There are many ways to show your support that don’t require $$.

And, of course, don’t forget to go for your regular mammograms and to feel your breasts when you can (and report any changes to your doctor) because doing these things IS important.  It — what I can loosely call a self-breast exam (but really just washing myself in the shower) — is how I found my own lumps, about 17 years before I was due for my first mammogram (according to the recommended screening age back in 2009).  If I had ignored my lumps and waited for that first screening mammogram, I can safely say I would have been long dead!  So please pay attention to your body and your breasts.  While the vast majority of lumps are benign, I still believe it’s always best to bring your breast changes to the attention of your doctor.  Thanks for reading…

I will leave you with a picture that I think is my best advertisement for National No Bra Day and Breast Cancer Awareness Month.

lymph nodes

5 Days Post Bilateral Mastectomy and Complete Axillary Lymph Node Dissection (ALND)

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Side note:  The ACTUAL National No Bra Day is July 9th annually.  Someone had the great idea to do a braless day during October — Breast Cancer Awareness Month — to support “the cause.”  Adding insult to injury, the day they chose — October 13th — is actually the one day out of the whole year designated for Metastatic Breast Cancer Awareness.  Sadly, I’ve seen far more No Bra Day awareness advertising circulating around the web than I have Metastatic Breast Cancer Awareness Day info.

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