Bad Right Breast

I've Always Hated My Right Breast!

Amy and her Army February 25, 2014

Filed under: cancer,in memorium — Bad Right Breast @ 10:39 pm

I only just read the news less than an hour ago, and immediately began to cry.  Instantly aware, my twins ask simultaneously, “Why are you crying?” I couldn’t form the words.  How do you explain to a couple of five year olds that you’re crying for someone you’ve never met, and really barely even knew.  “A friend of a friend passed away this afternoon,” is all I could muster.

I admit I never would have known who she was.  One of my high school summer stock friends, whom I truly love with all my heart – Mia Laudato, reached out to me less than a year ago.  It starts for me there.  One of her best friends, Amy Furman Ames, has just been diagnosed with, you’ve guessed it, breast cancer.  She’s weeks away from turning 40, has a dear son just entering double digits, and she is beyond beautiful gorgeous with an amazing smile that never wears away.  Amy and I message each other over the course of several months.  She reads my blogs, I tell her stories about constipation problems.  You know, the normal cancer talk.  She makes my Mia smile, so I know she’s a special person.  We keep in touch through the summer, but the fall and now winter season isn’t so kind to her.

I’ve said it many times before.  Cancer knows no prejudice.  And EVERY PERSON’s experience with cancer is different.  It’s make-up, diagnosis, treatment, reaction to treatment and recovery.  I know this.  I say it all the time.  Based on the sheer fact that all of our genetic make-up is unique, our cancer is unique.  My story isn’t your mom’s story, your brothers, or even yours.  And it for damn sure isn’t Amy’s.  Amy’s story is truly beyond unbelievable, just as unbelievable as the woman and life she embodies.

The best thing Mia could have done for her best friend is create a private group ‘Amy’s Army’ for each person who has been touched in someway by this incredible creature to help her and her family fight through this.  And boy did she ever fight.  Ready?  Here’s her whirlwind told along the way by her brother:  diagnosed with breast cancer less than a year ago.  After numerous consultations &  chemo treatments, she has a mastectomy in early November with no cancer found in the lymph nodes. Less than a month later while still recovering from the surgery, Amy has a series of seizures, in which they discover she has brain cancer.  Days later, a second surgery removes the brain tumor.  Recovery is slow but steady, and she fights every step of the way.  Weeks later, she suffers from headaches and told that the area where the brain tumor was removed is now inflamed and possibly infected.  But when they go in for a 3rd surgery (in which they were prepared to permanently remove a piece of her skull), they find a 2nd larger tumor has now grown in the site of the first.  Stereotactic (focused) radiation treatment, the only type of treatment, is moved up.  She suffers temporary paralysis on one side, continued seizures, feeding tube inserted.  Starts to recover once again, moving back and forth from the ICU to hospice to a step-down facility, back to hospice.  Seems so simple putting it down into words, but this goes on all over the course of several months.

But at the same time, each and every person that visits this astounding being while in the hospital, says the same exact thing – she’s upbeat, happy, smiling, full of life, making jokes, so positive.  Two weeks ago, she is having visitors try on her fabulous wigs.  Never would you have thought that this was a woman fighting for her life.  A woman whose story told over and over again reads the same by each person who encounters her.  She is the epitome of beauty, inside and out.

Another factor I mention about cancer, is that EVERYONE knows cancer.  Either a family member, loved one, friend, child, sibling, or even yourself has gone through cancer.  When I’d take the subway and ‘look’ like cancer (you know, that bald, sickly look, with no eyebrows, the no eyebrows really did it), I’d get stares.  And soon realizing, that because I ‘looked’ like cancer, I reminded people of their cancer.  I say this for Amy’s caretakers.  Her mother, brother, family, friends, neighbors, co-workers, and countless more.  Amy’s story is now their story.

Amy passed away this afternoon, very peacefully and in no pain, with her family by her side.  Their lives will never be the same.  And yes, FUCK cancer for taking an irreplaceable person from them.  If any of them could have taken her pain away, I know they would have without hesitation.  Just as my Penelope climbs in my lap, wipes away my tears, and says, ‘I’m sorry your friend of a friend died.  That really stinks.’  Yes, sweetie.  It certainly does.

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ON TAMOXIFEN – and forced into Pre-Menopause February 21, 2014

Filed under: cancer,Tamoxifen — Bad Right Breast @ 6:46 am

It’s been the longest time since I’ve written, which can be blamed on a number of reasons – family responsibilities, day-to-day chores, long work hours, twins entering Kindergarten, volunteering duties, football season, the holidays and my never-ending TV addiction.  In truth, it’s been hard to think about writing.  Not because of the exhausting list above (although partly to blame).  The past 9 months have been the hardest for me, mentally.  Let’s rewind.

April 17, 2012 marked my last day of radiation, and the unofficial end of my cancer treatment.  I sank into the deepest depression, and thanks to my best friend (a psychotherapist) helped me identify what was happening.  For the previous 10 months I had been treating, aggressively I’ll admit, my Stage 3b Breast Cancer (double mastectomy, 4.5 months of chemotherapy, and 30 radiation treatments).  Once I wasn’t actively treating it, I went back to the waiting game to see if all of that energy spent was actually worth it.   The waiting game is something I talk about often.  Those long days and nights, sometimes weeks, and for even some months, in which you’re not given any answers to questions you sometimes don’t even know to ask.  That anxiety that eats away at every minute of your day.  Yeah, that’s the worry game, and one which you can either ignore, which is easier said than done, or let eat away at your inner self.

Since my cancer was estrogen receptive, meaning that it most likely progressed at such a fast pace due to the high estrogen levels in my system (yet, another mark of being a woman), I was put on the drug Tamoxifen.  The drug is an estrogen blocker, thus lowering the levels of estrogen in my system.  The plan was to be on the drug for five years, the normal plan for most women whose cancer is estrogen receptive.  On May 30th, my 37th birthday, my oncologist scheduled for me to have a Pet-Scan taken, at my request and her suggestion, in order to ensure that all of the treatment worked and that I was in fact ‘cancer-free,’ those words I longed to hear ever since I felt that lump nearly a year prior.  (Side Note:  last week, nearly 2 years later, I found out that the Pet-Scan was not at the approval of my insurance company, thus the beginning of my appeal to have them cover the $3700 soon-to-be delivered bill.)

I started at that time to see my list of doctors every 3 months – medical oncologist, radiation oncologist, breast surgeon (even though I now have fake ones, she’s still necessary), and the reconstruction surgeon (still had to finish getting nipples and areolas, see BLOG for more info!).  Each time upon visiting my medical oncologist (the one responsible for the chemotherapy treatment), I would be asked the same questions about possible physical side effects from the Tamoxifen:

  • Are you having your periods?    Yes
  • How often?  Usually every other month or so
  • Any leg cramps or clots?             No
  • Any hot flashes?                            No

You see, the estrogen blocker is meant to reduce the estrogen in my system, and basically throw me into pre-menopause.  However, since I wasn’t having any of the physical side effects, my oncologist assumed that my estrogen levels were still at a somewhat normal level.  She recommended that I take an additional estrogen blocker, a treatment actively being pursued in the UK, by coming to the hospital once a month for an injection, for the NEXT FIVE YEARS!  I said no immediately, and knew without hesitation that I would not be able to mentally handle that concept.  It was tough enough to get to the hospital every 3 weeks for chemo, then 5 days a week for 6 weeks for radiation, and now every 3 months to see her.  The memories, the anxiety, the waiting – it all wears on my soul, and I knew adding 12 times a year for 5 years to that would become physically painful.  So instead, we agree that I may have to stay on Tamoxifen for 10 years, instead of just 5, since I’m so young and I’ll still have estrogen in my system for years to come.

So for the next year, I continued to live my new normal life.  My hair grew back, with the chemo-curl proven myth to be true.  After finishing all of my reconstruction, my tatas looked better than ever, with almost all scarring wearing away.  My right arm goes through its ups and downs, from having the rare stinging numbness return (which I’ve come to identify as phantom nodes), to carpal tunnel getting so exasperated in my wrist I’ve turned to acupuncture (which does help), to wearing a sleeve when flying so that it doesn’t retain water and swell up (quite painful and takes 24 hours to return to normal).  I was starting to get used to it all.

Then in June of 2013, I celebrated being one year cancer-free.  At a time when I should have been overwhelmed with happiness and excitement, something else started to happen.   I started to have mood swings, sprinkled with fits of rage.  I couldn’t focus.  Multi-tasking became quite challenging, which for me is usually a walk in the park.  And something else was going on, something that I can only describe as being disconnected.  I had been on Tamoxifen for more than a year.  At my August check-up, I’m asked the same physical side effects questions, and my answers were always the same.  But this time, I decide to throw out there these ‘things’ that I’m feeling, or not feeling, in just casual conversation, and how it’s starting to affect both my personal and work life.  The Dr. says (not her exact words), ‘Yes, these are the depression side effects.  Most women under the age of 45 choose to go off of the drug around this time, because of these feelings.’  WHAT!  Was exactly my immediate reaction.  All this time, I thought I was going insane, stuck in my head, something that I worked to stay out of throughout all of my treatment the year prior, and now I’m being told that this drug will keep me there for another NINE YEARS!

The oncologist continues talking.  She says that she can recommend a psychiatrist who could prescribe an anti-depressant for me.  I’m thinking exactly what you’re thinking.  You want me to compound a drug in my system with another drug.  Is adding fuel to the fire really the answer?  Within minutes of finding out that none of this is a result of my own doing, that these ‘things’ I’ve been feeling and going through were not because of me but were because of Tamoxifen, I instantly felt a weight lifted.  I wasn’t going insane.  I refused the shrink suggestion, and promised that if it got to a point in which I needed help, I would rather go to group counseling at Gilda’s Club, and talk with other people going through the same issues instead of a single doctor who would most likely not have any idea of what I was actually dealing with.

I walked out of there and felt like nearly a new person.  All of that mixed chaos, feeling disconnected, the medical field lumped into one category, and labeled it as ‘depression.’   I was immediately able to identify what was going on whenever it happened and then able to take a step back and continue forward.  There are times in which Graham pushes me to simply cry it out, because we all know how much a good cry helps. The fits of rage and mood swings are much less now.  I’m not sure if my body has adjusted to the Tamoxifen or if I’m able to subconsciously ignore it. I have been focusing much more on the positive in my life – my husband, my twins, my family, my friends.  My girls are on an excellent school.  My husband is finally getting the credit that he deserves.  We live in an amazing city.  I have a tremendous job.  And most of all, I have my health.  Even at the worst of time in being diagnosed and then treatment, I’d remind myself that there’s always someone out there that has it much worse.  And in truth there is, and unfortunately there not that far away.

That’s right.  Life is in fact good.

 

On air with NPR’s Brian Lehrer January 22, 2014

Filed under: cancer — Bad Right Breast @ 1:45 pm

A great listen this morning on NPR’s NY station, WNYC with Brian Lehrer.  I’m on at 14:26.

Enjoy!

http://www.wnyc.org/story/open-phones-should-we-blog-our-illness/

 

Reposting 1st Chemo treatment October 28, 2013

Filed under: cancer — Bad Right Breast @ 2:50 pm

https://badrightbreast.com/2011/11/15/chemo-treatment-1-of-6/

 

Reposting: A DATE IS SET October 11, 2013

Filed under: cancer — Bad Right Breast @ 11:56 pm

In honor of being aware, here’s when I made a decision about my reconstruction.

https://badrightbreast.com/2011/09/04/a-date-is-set/

 

AWARENESS October 2, 2013

Filed under: cancer — Bad Right Breast @ 10:27 pm

Before discovering the lump and being diagnosed, I always considered ‘Breast Cancer Awareness Month’ as a no-brainer. I mean, aren’t we all aware that cancer exists? There isn’t a single person I know that hasn’t had some sort of direct relationship to cancer, whether it be your parent, grandparent, sibling, friend, loved one or even yourself. (See the blog post ‘Everyone Knows Cancer.’) But when you feel the lump, and then later hear that it’s positive, your ‘awareness’ definitely changes. It was only because I was aware of my body at all, that I ended up finding my lump. My ever so random, probably too habitual, self-massaging of my larger than DD breasts. So the answer is ‘yes.’ Being aware of your body makes you more aware when something is awry. But it’s more than that. It’s more than feeling something that doesn’t belong. And it’s definitely more than the color pink, some pretty ribbons and running for anything but the subway or to the bathroom.

What happens once you know something just isn’t right? Who do you call? And when you figure out who to call, how do you hold it together each step of the way? I’ve said it before, I’m not sure I would have called to have my mammogram had it not been for my twins. So I owe it them for getting me to the first screening. After that, well, to be honest, it would have been extremely negligent of me to do nothing after a doctor tells you that there’s something ‘suspicious.’ Be aware – that’s the answer. And again, what the hell is the pink ribbon for?

I appreciate the fact that the ‘awareness’ educates people, I do. Educating people about the diagnosis, surgery, reconstruction, treatment and aftermath of my cancer is why I continue to blog. But there are stories that don’t end like mine has. There are people, some that I’ve grown up with, family members, classmates, friends that I’ve met along the way, colleagues, whose stories don’t have happy endings. While I love the support and the encouragement, the pink ribbon brings forth a pluthera of mixed feelings. My sister tattooed it on her chest in my name for pete’s sake. People have run races just for me, have sent in dedications in my honor. People want to do something, anything, and in anyway they can to participate, to help. But when we say things like it’s a battle, a fight – when you survive you’re called a winner. I’m guilty of it too. But what happens when you don’t survive. Did you not fight hard enough? Did you not want to live bad enough? Were your friends and family not worth it? Of course not. But those are the implications that arise.

And while donating to causes, any cause, is a personal choice with the best of intentions, I do wonder if the pink ribbon campaign has done more for the world of marketing than it has for the world of medicine. Did you know that the pink ribbon concept was actually a salmon ribbon? But the woman who started the campaign didn’t want a corporate organization using her brainchild to further a marketing a publicity campaign that lost sight of her truest intent. Didn’t Yoplait, the yogurt company whose campaign had you send in the cup lids, contain an ingredient which included a bovine growth hormone, which was banned in most other countries? And how many of the make-up ingredients from those major cosmetic companies include cancer causing agents? And did you know that out of the total amount of money donated only a small percentage actually goes to research? The rest, by law, can go to ‘sponsorship’ campaigns or ‘promotional’ supports.

The purpose of ‘awareness’ is what do you need to do and when? Where do you go? Which questions do you ask? What are the resources available? So when you make your decision on what to do this month, or any other day of the year, may simple request is this. It starts with you. Only you know your own body. So before you donate or run, or for god’s sake wear the color pink – check yourself. Make your appointment. Trust your instinct. It could save your life, like it did mine.

 

I WON AN IPAD MINI! June 20, 2013

Filed under: cancer — Bad Right Breast @ 2:47 pm

Thanks to the New York City Health & Hospital Corporation!

“We have a winner! We’re pleased to announce that Laurie Brown Kindred’s mammogram dedication won our “I dedicate” contest, and she is now the lucky owner of a shiny new iPad mini. Laurie dedicated her mammogram to her twin daughters. She wrote:”

 

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