Tag Archive | bilateral mastectomy

The Words…

breast cancer thirties 30s 30's dog dogs wiener german shepard stage 3c young kids family miniature dachshund summer jeep

Last ride of the summer with the boys & my pups…

I’m going to try something new here.  Rather than focus on a premeditated topic, I am just going to write.  Crazy, huh?

You could say writing was an activity I once loved, but this wouldn’t be altogether accurate.  Sure, as a child/teenager/young adult I enjoyed it on a level that seemed foreign to some of my peers.  Was I passionate about it?  Of course.  But it was more than this.  Writing was almost akin to eating or taking a breath for me.  It was something I had to do to survive.

I know I sound like an idiot.  Obviously you can’t live without eating (though God knows I’ve pushed these limits in the past) or taking a breath.  Not writing can’t possibly be as perilous for one’s body as trying to survive without food or oxygen, of course.  But it was my soul that would cling feverishly to this outlet.

What I’m trying to tell you is that writing was something I needed to do.  It was strangely painful to not write.  It was as if the words needed a place to go and if I didn’t let them out, they would build up inside me until I felt emotional pain.  Physical distress.

Writing was my coping mechanism.  My escape.  My salvation.

I needed to write the words that flowed from my mind, my heart, through my once capable young hands.  And, equally, the words needed me to set them free.

breast cancer thirties 30s 30's young Salvador Dali tree museum tampa florida wish young stage 3c IIIc ribbons

The Dali Wish Tree: “This wish tree, streaming with ribbons, carries the wishes of our visitors and community. We invite you to contribute a wish to the tree, and to be part of the cultural tradition that extends back to Hindu and Scottish rites. In all its forms, the wish tree invites and holds our fond hopes.” [Photographed during our lovely visit to The Dali Museum in Florida (with & thanks to jme & bryan), just before we added our wishes, our words, to the tree’s hope-laden branches.]

But somewhere along the way, this relationship changed.  Life changed.  My desire/need (or whatever it was?) to write is not like this anymore {or that’s what I like to tell myself, at least}.  At some point, writing became an obligation, a job, a necessity of another sort.  And the words that once needed to break free from my mind, my soul, were trapped inside.  Bottled up.  Locked away.  Dusty and hidden, but not quite forgotten.

I hadn’t thought about this in ages.  Until just a few minutes ago, that is, when I found myself once again thinking about stopping here to read your kind words and to tackle one of the tens/hundreds of cancer-y topics I have swirling around in my brain, topics that I feel should be addressed in these “pages” because of their importance.

And, once again, I thought about closing my blog tab in an attempt to forget about writing until the next time I’d find myself in front of the computer screen.   Yes, the next time, when I could once again procrastinate and put off tackling the weighty topics I know should be addressed, topics that I will likely continue to attempt to deal with despite the gnawing pain that emanates from the words trapped inside my soul, the words that long to be set free.

Is It Really “All About the Titties” on National No Bra Day (a.k.a. Metastatic Breast Cancer Awareness Day)?

no bra day, #nobraday , #nobradayselfies , NOT breast cancer awareness, metastatic breast cancer awareness day, breast cancer, thirties, 30s, 30s, pinktober, Breast Cancer Awareness Month

For Real?? Is the pink ribbon pasted on this pic supposed to make this image less offensive?

Is It Really “All About the Titties” on National No Bra Day (a.k.a. Metastatic Breast Cancer Awareness Day)?

Though it has been three years since I wrote “Put That Pink Can of Soup Down & Put Your Bra Back On,” and two since it was published on The Huffington Post, it continues to be featured on Facebook pages and in articles and blog posts, etc. around the world and I continue to receive a surprising number of emails regarding the post and its message(s).

There is good news and bad news here.

I’ll start with the positive.

I hope you know how much I have appreciated hearing from so many of you over the past few years.  I need to tell you that while reading through the comments and messages you’ve sent, there have been so many times when I have been deeply moved by the stories and/or kind words you’ve shared with me.

I’m honored that so many of you have taken the time to read and share the post/article. I’ve been stunned to learn how many of you agree with or at least understand/respect my feelings about pinkwashing, no bra days, Breast Cancer Awareness Month, etc.  Because I stand by my message, I’m grateful that my point of view is shared by many other men and women who have been personally affected by cancer and by a surprising number who’ve had no direct contact with the disease. And I’m thrilled each & every time I hear that the post has changed minds and has educated…because it was clear to me that education was needed three years ago.

That being said, I must admit that despite continued positive support for the post’s message, I was wondering if perhaps my words might be too harsh for this October.  I wondered if those of you who might be reading it for the first time would be shocked by it because maybe, just maybe, things had changed so much so that the post wouldn’t have any relevance on 2015’s National No Bra Day and Metastatic Breast Cancer Awareness Day.

I figured that a lot could change in two or three years and I had hoped that the themes of the first article wouldn’t be pertinent anymore.

Did things change as I’d hoped? Did “the Internet” deserve a pardon for cleaning up its act? Could I congratulate the former “No Bra Day for Breast Cancer” offenders for turning things around?

Well, you need only look at the image at the top of this page for the answer.  It took me all of 5 seconds to discover that distasteful National No Bra Day “for Breast Cancer Awareness” or “to support breast cancer?” advertising is still running rampant on the Internet this year.

“What’s the big national no bra day, breast cancer awareness month, support breast cancer, set tatas free, october 13, #nobraday, pinktober, 2015, metastatic breast cancer awareness day, bilateral mastectomydeal?” you ask.  Well, for starters, National No Bra Day for Breast Cancer isn’t a real holiday. When/where/how did this event begin and who created the first No Bra Day? Good question. The origin is unclear, but as far as a handful of journalists and I can tell, this event was created by Anastasia M. Doughnuts (hmm, sounds like a real name to me!) through a Facebook event page in July 2011.  The first event had ~400,000 supporters, so it was repeated in July, 2012. Then someone had the bright idea to have a second No Bra Day annually on October 13th to piggyback on Breast Cancer Awareness Month and to bamboozle women into thinking that by removing their bras, they would be helping the breast cancer “cause”.  If you ask me, Anastasia was probably a horny guy who was looking to expand his soft porn collection with girl-next-door pictures of breasts.  Well, Mr. Doughnuts, kudos! Your plan worked! And it may have worked better than you expected based on what I’ve seen this October 13th. Frankly, it seems that some of these girls have no intention of making a difference with respect to breast cancer and may just be using “the cause” or the event to share sexy selfies of themselves.

Sadly, the movement seems to be growing.  This pseudo holiday has gone international with an estimated 43,000 participants on the “International No Bra Day” Facebook page alone.

And much to my chagrin, many of the photos I came across when I searched the web using keywords like No Bra Day Breast Cancer were far more risque than the image I borrowed in 2012/13.  I can safely say that some could even be classed as pornographic.  Dare I say it, but I think “No Bra Day” has sunk to new depths this year.

Rather than give the raciest photos any extra attention by posting them here, I’ll tell you that they are easily searchable if you are so inclined.  But I don’t think the people/groups who posted them deserve the acknowledgement of their efforts to make light of and to sexualize breast cancer.

national no bra day breast cancer awareness 2015 #nobraday #nobradayselfie, bilateral mastectomy, oct. 13, metastatic breast cancer awareness day pinktober

And despite the song & dance on some of the sites that host these images, trivializing and sexualizing breast cancer is exactly what they are doing.

Take the “No Bra Day, For Breast Cancer Awareness” Facebook page.  The page’s owner claims that No Bra Day for Breast Cancer Awareness is meant to be a silly event that “really isn’t about sexualizing or about the breasts.”  But this is his/her description of his/her No Bra for Breast Cancer Awareness page & event:

“Boobies are fantastic, we all think so! What better way to express the way we feel, than to support a full day of boobie freedom? Women are magnificent creatures, and so are their breasts. Let us spend the day unleashing boobies from their boobie zoos. Ladies, free your breasts for 24 hours, our perkiness should not be hidden! It is time that the world see what we’re blessed with!
Your breasts might be colossal, adorable, miniature, full, jiggly, fancy, sensitive, glistening, bouncy, smooth, tender, still blossoming, rosy, plump, fun, silky, jello-like, fierce, jolly, nice, naughty, cuddly, sexxy, perky, or drag the ground.”  Not wearing our bras for the day is about “trying to GIVE hope [to breast cancer survivors], ya know?”

Pardon my language, but all I can say is, What the f*ck?

I could go on with this one, but I think there is no need.  You get the picture.

To be fair, this is nothing compared to some of the no bra day for breast cancer pages/posts/publicity I’ve seen in the past 24 hours.

Some of the posts/words/images that surprised me most can be found on Twitter.  I say “surprising” because yesterday was really the first time I had spent more than 5 minutes on Twitter and what I saw is not what I would’ve expected from a very public and mainstream site where teenagers, grandmothers, TV hosts, breast cancer advocates, movie stars, doctors, journalists and just about every other social media user has an account, whether they are in the public eye or just your average Joe.  Naive as I may be, I expected better for this reason.  I know, I know…

The feed for #NoBraDay (a top trending topic all day yesterday) is an enlightening read.  [  <—-  sarcasm]

no bra day 2

I’ll post this pic from the #NoBraDay twitter feed since it isn’t real. But some of the “real” poses rival this one from the waist up…

I’m pleased to say there are women and men on Twitter who share my stance on the day.  But i’m disappointed to say there are far more who praised yesterday either because it meant they’d get to see naked or braless “boobies, titties, etc.,” or because it meant they could “set their own tatas, girls, boobies, etc.” free and show them to the world if they felt like it.

I won’t lie. Reading/seeing some of these tweets made me dream of locking a handful of these folks in a room with a bunch of topless breastless women (like me) so they could have a little glimpse into at least some of the most obvious possible physical realities of a breast cancer diagnosis in our boob-obsessed world.

I can’t tell you how many perverse comments I read from men and women, how many racy selfies I saw, or how many tweets combined both [like a tweet too provocative to post here — it features a girl’s selfie (including her breasts/nipples and face, etc.) and the words “rape my chest”].  I’m shocked by how many girls were willing to bare their naked breasts in sexy poses “for breast cancer?”

I’ve asked this before, but how the hell could this help anyone with breast cancer and how could it assist with finding a cure or even raising awareness of breast cancer.  If you ask me, these provocative photos and poses do raise awareness of something, but certainly not breast cancer.

I have more to say, more to share, but since National/International No Bra Day has come to a close — and since I’m exhausted — I’m going to wrap this post up.

Before I do, it’s important to tell you that this day, October 13th, is the one day each year dedicated to Metastatic Breast Cancer Awareness.  This should be a post of its own (and I will try to address this important day in a future post), but I think it’s rather fitting that I just have time for a brief mention of it here. Why? Because Metastatic Breast Cancer Awareness Day has once again been eclipsed by “No Bra Day.”

Thinking about how a fake holiday that sexualizes breasts and trivializes breast cancer in the name of advancing the breast cancer cause (whatever that is!) and raising awareness for a serious disease that kills ~40,000 women & men each year should turn your stomach.  But knowing that it almost completely diminishes/overshadows Metastatic Breast Cancer on the one day each year designated for MBC Awareness should make your skin crawl.  Give me a break!  One lousy day granted to educate patients and the public about Metastatic Breast Cancer, to recognize the over 100 women & men who die EACH DAY because of this disease, and to acknowledge those who are living with it 24/7.

A less revealing pic from Twitter's celebration of No Bra Day for Breast Cancer... #nobraday

A less revealing pic from Twitter’s celebration of No Bra Day for Breast Cancer… #nobraday

So, yes, it seems that National No Bra Day is still “All About the Titties” and not the women attached to them.  No pardons will be granted this year.

I’ll leave you with the photos I included in my “tweeted” response to the #nobraday & #nobradayselfie posts:

Thank you for reading… All my best to you…

Cancer In Many Languages by Morgan (Leisha’s son)

breast cancer 30s thirties 30's stage iiic 3c mastectomy dogs kids family life

This is me with Kevin (our big dog), weenie (our little dog), and puppy (my nanna’s dog) pretending to play xbox with me  🙂

This is Morgan, my mom’s son.  Thank you for your comments and nice messages and likes on my last post.

My mom has been sick with infections for a while and is very tired & not feeling well so i thought i would write another post for her.

This time I thought I would write a post so you could see what the word cancer is in languages around the world.  In English, it is CANCER.  Cancer is “a malignant growth or tumor resulting from the division of abnormal cells.”

“Cancerous tumors are malignant, which means they can spread into, or invade, nearby tissues. In addition, as these tumors grow, some cancer cells can break off and travel to distant places in the body through the blood or the lymph system and form new tumors far from the original tumor.”

This is CANCER in other languages:

KANKER

KANCER

السرطان
ԽԵՑԳԵՏԻՆ

KHETS’ GETIN

XƏRÇƏNG
РАК

RAK

ক্যান্সার
Kyānsāra

RAKA

CÀNCER

KAINSAR

癌症

RAKOVINA

KRÆFT

KANKER

KANSER

KHANSA

 KANCERO
syöpä
καρκίνος
kansè
סרטן
KRABBAMEIN
AILSE
CANCRO
癌
GAN
암
AM
Vėžys
KREFT
سرطان
RAK
câncer
рак
cáncer
โรคมะเร็ง
Rokh marĕng
KANZER
ung thư
CANSER
umdlavuza


 ❤   🙂

There are more lanaguages and more words for cancer but i’m tired and my mom says i have to go to bed! But this should be enough to show you that cancer is such an important and major thing that there’s a word for it in every language. Every part of the world knows about cancer. It’s everywhere! Cancer doesn’t care who you are or where you live or what language you use. It’s a horrible disease!

Thank you for reading my mom’s blog and for supporting her. I know you mean a lot to her. I know she’ll be back and write again when she feels better. Shes been really tired but shes been on a lot of strong antibiotics for 6 or 7 wks now so i hope she’s better enough to write soon.

Thank you! Goodnight! from Morgan

❤     🙂       ❤      🙂      ❤     🙂

On a Dark and Winding Road

breast cancer thirties 30s 30's illness twins lymph nodes bilateral mastectomy stage 3c boys family stonybrook park life

This is where I have been during my absence.  On a dark and winding road.  It has taken me nowhere good.  It has been fraught with pain and stress and painful, stressful days.  And weighty revelations that come when you feel as though you just can’t handle one more thing — until one more thing comes and you begin to tell yourself that you can’t handle one more one more thing.  But still I walk this thorny path.  Or drag myself along its rough terrain.  And I wonder what choice I have.  Or if it is even a choice at all.

But I am here.  My twin boys are with me.  And though it doesn’t “feel like” summer in our world most days, summer is here.  My favorite time of year.  The little break we have from snow and cold and grey is here.  And it means more time with my growing boys and dogs.  And for that I am grateful.

I am grateful to you, too.  For continuing to “visit” even during my silence.  For continuing to leave messages or send emails.  I feel fortunate to have you.  I hope you know how fortunate…  Thank you…

p.s. My youngest sister (21…well, she turned 22 days after getting off the plane) just returned home from Alaska with her greyhound mix, Gracie.  So that is a good thing, too.  We’ve missed her and hadn’t seen her in a year and a half — and now they are living in my house!  Here’s a photo —

breast cancer thirties 30s 30's illness twins lymph nodes bilateral mastectomy stage 3c boys family stonybrook park life

A fun afternoon with my littlest sister & the boys

Thank you all…  I hope life is being kind to you…

 

 

 

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.

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

 

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.

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

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…

DSC01989

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

Give Kids The World

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.

DSC01994

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.

DSC02002

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

My warmest wishes…

 

Silence Isn’t Golden — and — Weekly Photo Challenge: Inside / Little Dog Inside Big Dog

cancer in my thirties breast cancer 30s 30's dog dogs

There have been times in my life when I have agreed with the title of that old song, “Silence is Golden,” by The Four Seasons.  But my silence here has not proven to be one of those times.  As the days following my last post crept to weeks and then to months, I couldn’t believe that so much time had passed.  But I still felt powerless to do much about it.

Call it the result of unrelenting exhaustion.  Call it the result of a muddled mixture of intense pain and a haziness induced by strong opioid painkillers.  Call it an inability to balance new/worsening symptoms with life and its demands.  Call it what you will, but whatever it was, I just wasn’t able to pull myself through “it” to find the energy and space to write to you.

I value our time together.  I value our relationship.  And I didn’t want to just pop in to do a quick, crappy post while I was in the midst of feeling as though I was caught in a tailspin.

YOU:    “So, is it over?  Are you better?  Is this going to be a terrific post that was well worth the wait?”

ME:      “No.  No.  And no.”

YOU:    “Aw man, I was hoping for something riveting and inspiring.”

ME:      “I’m sorry, this post will be neither.  But I figured that if I waited any longer, the gap would just widen and it would be even more difficult to return.  So I am here, for better or worse, with a crappy post just meant to let you know that I have missed you and that I do value our relationship — probably more than you’ll ever know.”

ME:      “And, given the nature of some of the emails I’ve received from some of you, I felt that some of you might be wondering if I’d gotten much sicker and perhaps moved on to the great blue yonder.  To be honest, I would wonder the same thing, especially because some of my “virtual” cancer friends (cancer bloggers or online breast cancer community friends) have disappeared in this way when they’ve died.  Silence.  Then, after a few days or weeks or so, a husband or best friend or mom will pop in to say, “Sorry, _______ died last month.  I know she’d want you to know.”

YOU:    “Well, I didn’t want to say it, but, um, yes, maybe “that” thought crossed my mind.  This is a cancer blog, afterall!”

Okay, all kidding aside, I wanted/needed to say hello.  I wanted you to know that you are still in my thoughts.  I wanted to respond to the kind emails and messages I’ve received.

And I wanted to apologize for such a long silence.

Sure, I’ve felt crappy.  Sure, I’m struggling to manage life and the boys and everything else while feeling so cruddy.  But you’ve come to mean a lot to me and I owe you more than this silence.  Plus, this is a cancer blog, so I should be blogging about feeling crappy and about the ins and outs and ups and downs of this whole experience.

I should.

I know I should.

But I wage this positive vs. negative battle with myself all the time.  In my day-to-day life, I try to be positive and upbeat because this is what is expected of me.  So it is difficult for me to give myself permission to be “Debbie-Downer” in my day-to-day.  And sometimes that cup runneth over to my blog, too.  If you’ve been reading all along you know that this doesn’t happen often — I usually don’t have much trouble “telling it like it is” and spreading some gloom here! — but it does happen sometimes.

I’ll try to elaborate a bit more on how life has been soon.  But for now I wanted to end the silence.  Close the gap.  Get back on the horse.

And I wanted to thank you for sticking by me.

I’d also like to know how you are doing…  During my silence I have not only been a bad blogger, but a lousy blog reader.  But it isn’t because I haven’t thought of you.  In fact, I enjoy reading your blogs far more than I enjoy creating posts for my own, so I’m certain I’ve missed you much more than you’ve missed me!  So if you have a moment, please drop me a line / leave me a comment to let me know how you are — and I promise to pop over to visit your blog soon.

And I will be back soon to fill you in.  Even if I just write crappy one paragraph posts.  I’ll shoot for “quantity vs. quality” rather than the “neither” I’ve been giving you!

p.s. For old times’ sake, I’ll include a few photos that happen to be in line with The Daily Post’s Weekly Photo Challenge.  Okay, “on purpose” rather than “happen to be.”  But you know how I like pictures!  This week’s challenge topic?  “Inside.”  Participants are asked to photograph “something” inside “something else.”  [There’s more to it than that, but I’ll give you the skinny version in case you are tired, too!]

You know how I love my dogs, so I’m giving you photographs of “Ginger Inside Kevin.”  Or “Little Dog Inside Big Dog,” because I refer to them as “Big” and “Little.”

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Kevin is a Heinz 57 rescue who we brought to live with us after my dogsoulmate, Mattie, my mini schnauzer, died of cancer in 2009.  Ginger was a “Christmas/chemo/mastectomy/more chemo/radiation/and still more treatment gift” my sister gave me after I’d had a bunch of chemo and my bilateral mastectomy, and then was then destined to go through more chemo and radiation and other treatments.  My littlest sister, Laura, thought she would be a wonderful snuggler and that she’d make it easier to get through the difficult days, so she wrapped her up for Christmas…  And what a wonderful gift she was/is.

Well, ever since Ginger/Little’s arrival, she has ruled the roost.  Though significantly smaller than Kevin, she is definitely the alpha.  From the very beginning, she would climb into or onto Kevin and he wouldn’t move a muscle.  To this day, if she climbs into his curled up body, he stays in this position until she is ready to get up — mostly because she’ll bark at him if he moves an inch!  And since they are coincidentally almost identically colored, it is difficult to tell where one ends and the other begins.  Most pictures of the two of them together look as though I’ve snapped a photo of Kevin with a small dog-like growth protruding from his neck or back.

A looong explanation for a few photos!:

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Can you find Ginger?

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Once in a while, Kevin builds up the nerve to *attempt* to knock Little off his chair. He is never successful…

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***Good night and thank you for visiting.  Thank you for helping me through the dark days, even when you don’t know you are doing this…***

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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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Weekly Photo Challenge: From Lines to Patterns — Prelude to Toplessness

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As I was assembling photos for this week’s photo challenge, I stumbled across a file filled with photos from September 2010.  It was three years ago this month.

It’s safe to say that the dusty manila icon on my computer screen stopped me in my tracks.

It was filled with good memories from our trip to Florida with jme and my mom.  It was an important trip for many reasons.

I learned that I had cancer that April and had been having a horrible time with chemo ever since.  So when I finally had a break from the Adriamycin, Cytoxan, Taxol and Herceptin, we found some supercheap last minute plane tickets and I threw our clothes in a suitcase.  We were off with just a day or two’s notice.  This was my attempt at finding the spontaneity I’d been told The Big C endows you with.

I remember being supersick but grateful to be there.

Especially because of what was looming over my head.  Other than the cancer thing, of course.  What loomed, large as life, was the fact that I would be returning home the day before the surgery I had been anticipating since April.  It was time for my bilateral mastectomy and complete axillary node dissection.  My tumors had finally shrunk enough to make my formerly “inoperable” cancer “operable.”

I’m explaining all of this because I looked at the shots of superbald me smiling next to my family in Treasure Island, Florida, and I was filled with the same sense of dread that plagued me on that trip each time I stopped to consider my reality.

And then I skipped ahead one image too far and saw myself in the hospital bed.  Days after my surgery.  Showing my bruised body and bandages and blood-filled drains to the camera with a vacant look in my blue eyes.

For all the time I’ve spent in hospitals, there aren’t that many photos of me within their walls.  But I recall thinking that it would be important for me to have some photos from my weeklong post-surgical stay — in case I ever wanted to document my experience in some way.  There are only a handful of photos, but there are enough to make me swallow hard.  Pictures of me with bandages, and some without, as I look at my incisions for the first time.

Fast forward three years and here we are.  I have this blog, this platform, and I think I am ready to share.

But not just yet…

I still need a day or so to wrap my head around what I am about to show you before I post the images.  And, who knows, maybe I won’t be able to post all of them?  Maybe it will be too much for typically modest me?  I truly hope not, because I think this is an important part of my story.  An important reality that needs to be shared to blow a hole in all that pink frilly nonsense that makes breast cancer seem less serious, less deadly, less disfiguring.

So please bear with me as I summon the courage to post this pivotal piece of my story.

In the meantime I will lighten the mood with this week’s challenge photos.  Titled “From Lines to Patterns,” this challenge tasks us with interpreting lines and patterns through the camera lens:

“We see lines and patterns in the world around us, in nature and things man-made. Sometimes we don’t realize they’re there: on the street, across the walls, up in the sky, and along the ground on which we walk.  So…grab your camera, get outside, and snap a great shot of shapes or lines that you stumble upon, or a cool texture or pattern that catches your eye.”

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My little W

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“Under Construction” — Spring 2007 — I’m wearing the same clothes I was wearing in this photo right now! (But the pants are tighter!)

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The beginning of Autumn at the Christmas tree farm

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M climbing the giant web

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Stripes and patterns: Max, our Leopard gecko, was a gift for my 20th birthday. In her younger years she was a vibrantly-colored patterned beauty (for a reptile, anyway!). This was her last picture — she died of old (15 years!) age later than night.

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My Mam’s “Fancy Jell-O”

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NYC

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Thank you for visiting, for looking at this hodgepodge of photos, and for standing by me as I share my story.  I am a grateful girl.

See you soon…

P.S. To participate in The Daily Post’s Weekly Photo Challenge, just click here or here.

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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Weekly Photo Challenge: Delicate

cancerinmythirties.wordpress.com breast cancer weekly photo challenge delicate breasts lump lymph nodes surgery

PowerPort (port) through which chemo and other medicines and fluids can be administered. Also great for lab draws and scans for which I.V. contrast is necessary. I was reluctant to have the port placement ‘surgery’ back on May 7, 2010. But I am so glad I wasn’t given a choice & was ‘forced’ to do it — it has been a lifesaver!

Weekly Photo Challenge: Delicate

If you would like to participate in The Daily Post’s Weekly Photo Challenge:

http://dailypost.wordpress.com/category/photo-challenges/

http://dailypost.wordpress.com/2012/12/14/photo-challenge-delicate/

Weekly Photo Challenge: Renewal — Confessions of a Former Mermaid

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One of my most favorite places in the world
cancerinmythirties.wordpress.com

The Daily Post’s Weekly Photo Challenge subject for this week is renewal.  The word can mean different things to different people.  But for me, one word comes to mind — SEA.

Perhaps I was a mermaid or a sea turtle in another life?  Or perhaps my love of the water is a genetic trait passed down for generations by my English and Scottish ancestors, much like my blue eyes and my dimples?

breast cancer mastectomy hawaii beauty ocean sea

Regardless of how difficult life can be and how sick I have felt at different points along this rocky road since the cancer diagnosis, there is always one place where I feel safe and healthy and whole again.  There is one place where I feel renewed.  And that is in the ocean.

Pools are lovely.  And the lake is okay.  But the sense of relief I feel when I walk into the ocean or into Florida’s warm gulf waters just doesn’t compare.  It is as if I am home again.  Let me swim in lovely warm sea water and I feel refreshed and renewed and ready to face the world again.

Unfortunately, I don’t have many opportunities to visit the water and I live in a region that is cold half of the year.  And the bathtub just doesn’t cut it!  So I live for our trips to the sea and hold fast to all of the memories I’ve made in the water… And I dream of the next time I will be able to immerse myself in Florida’s warm blue oasis.

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breast cancer bilateral mastectomy hawaii seaIt was almost 2 years ago when I was shifting treatments from Taxol (chemotherapy) to radiation.  I had a 10-day break in between, so we cashed in our credit card miles and flew to Hawaii.  I was terribly sick from 9 months of treatment.  I had a shiny bald head and was swollen from the steroids and kidney trouble.  And it hadn’t been that long since my mastectomy.  I was a disaster.  But the trip was a dream come true.  How fortunate I felt to be able to dip my toes into Hawaii’s alluring waters.  It was a little too chilly for swimming for my fragile body for most of the trip, but just having the opportunity to absorb so much beauty was incredibly uplifting and replenishing for my mind and soul.  Here are some of the photos from that unforgettable vacation.

breast cancer thirties young bilateral mastectomy hawaii ocean sea bald

Thanks for reading!

breast cancer thirties bilateral mastectomy hawaii plane ocean

breast cancer thirties bilateral mastectomy hawaii plane ocean kailua lanai

breast cancer thirties bilateral mastectomy hawaii plane ocean

breast cancer thirties bilateral mastectomy hawaii plane ocean sea turtle mom

Sea Turtle

To participate in the Weekly Photo Challenge:

http://dailypost.wordpress.com/2012/11/08/weekly-photo-challenge-renewal/

dailypost.wordpress.com/category/photo-challenges/

Weekly Photo Challenge: Geometry

Geometry in Glass:

cancerinmythirties.wordpress.com breast cancer thirties 30s young mastectomy

cancerinmythirties.wordpress.com breast cancer thirties 30s young mastectomy

http://dailypost.wordpress.com/category/photo-challenges/

http://dailypost.wordpress.com/2012/11/02/weekly-photo-challenge-geometry/

Yep, I’m a Cancer Patient

As you’ve probably assumed from the title of my blog, I am a cancer patient.  I first found the lumps when I was 33.  I was diagnosed exactly a month after my 34th birthday.

It sounds so simple when I say it like this.  But this experience has been anything but simple.

I know there people out there who have faced cancer and who have claimed that they were grateful for the disease.  I’ve even heard it referred to as “a blessing” by a select few.

I will tell you right now that I will never be one of those people.  Ever.  From my first real encounter with the disease (as a child watching her grandmother suffer and waste away from brain cancer), I knew that I hated cancer and that I could never see it as a blessing.

That being said, I cannot say that facing my own cancer and dealing with the aftermath of my diagnosis has been all bad.  Yes, the disease itself and the treatments, side effects, surgeries, fear, complications, etc. have been pretty awful.   I could downplay how rotten these things have been, and I certainly have done this plenty in my “real life” to make it seem like I’m fine and like it hasn’t been as bad as it has at times.  But I won’t do that here.  I don’t think trivializing these elements of my experience will do anyone any good, so I will do my best to be honest with you.

What I mean by “not all bad” is that I know there are amazing people I have met or gotten to know better and experiences I have had that I wouldn’t have had if I hadn’t heard those horrible words two years ago.  And that my children are better AND worse off because of my diagnosis.  Better because they have been embraced by people who love them and who will be there for them if I happen to not be here one day.  And worse because, well, having a mother with cancer is really crappy for a kid on so many levels.  And because they might have to bury me when they are still children — and there’s just no way to put a positive spin on that one.

One day I will tell you about some of the incredible people who’ve touched my life along the way.  About the amazing people who have rallied around me (and my boys) when we’ve needed support.  About the friendships that have been strengthened by cancer, and the relationships that didn’t survive.  About my sons’ best preschool friend and his parents, who went above and beyond for us.  About my children’s kindergarten teachers and a classroom full of parents who showed up on my doorstep with dinner for my kids or who took them to Chuck E. Cheese when I was too sick from chemo to do it myself.  About a school and a school district that came together to make sure my “little” ones had presents under the Christmas tree and that we never ran out of toilet paper when I was struggling to manage these things on my own.  And about nurses who’ve been my caretakers and my friends.  And people who made me feel like I’m not alone despite what could easily be an extremely isolating and lonely experience.

I will also tell you about tragic losses.  And despair.  And fear.  And sleepless nights.  And hot flashes.  And night sweats.  And dreams shattered.  And about how this disease has changed me.  About doctors who have been wonderful.  And doctors who have failed me.  I will tell you about my treatments.  About serious infections.  About what it’s like to be a young woman who takes pills that suck the hormones out of her body.  About what it is like to lose almost all of the parts that make you female by the age of 35.  And what this does to your body and your self-esteem.    About where the cancer was.  About how I found it.  And why it took months for me to have that crucial mammogram.

And one day I will tell you about my life “before” cancer.  About the people who helped to shape me.  About my family and my oldest, dearest friends.  About the things that made me “me” before this disease.  About the things that still make me “me.”

And so much more…

This is my story, for better or worse.  I plan to make it an honest account of what it is like to be given a life-threatening diagnosis at an age when your own death shouldn’t feel so imminent.

At the time of this first writing, I feel that I have so much left to share with my children and so much more to teach them.  So, more than anything, what you are reading is meant to provide a written record of my life for my children and a way for me to help them know and remember me and our story if, one day, I am not here to share in their lives.  But a part of me hopes it will be more than that and that maybe it will bring someone who is going through something similar a sense of comfort or a bit of virtual support.  Or that maybe it will serve as a cautionary tale and that someone, somewhere might pick up the phone and schedule that appointment they’ve been putting off.

For whatever reason you are here, I am grateful that you are.  Thanks so much for reading…