CHOOSING DOUBLE MASTECTOMY RATHER THAN LIVING AS A TICKING TIME BOMB__A BRACA2 BLOG

I’m really proud to be among the elite list of proactive women with the cancer gene who choose double mastectomy. In order to reach out to as many women as possible who are dealing with finding out they have BRACA I or II markers for breast cancer. I hope reading my blog helps. I did it before Angelina Jolie, but I’m very grateful for her bravery and for discussing this option publicly. She is doing a great service to women. The following is my Facebook blog while I was going through it. I intend to update this blog soon as it’s almost been three years since my surgery and I couldn’t be happier with making the decision.
Braca2 and Preventive Bilateral Mastectomy
by Cheri Crystal (Notes) on Thursday, August 5, 2010 at 11:28pm
Hi there, I’m home and thank you all for your wishes. After finding out I’m braca2 positive like my mom and sister not too long ago, I had a bilateral mastectomy with the first stage of reconstruction. I had a great team, a breast surgeon I trust with my life, who saved my mom’s life, and the plastic surgeon who Dr. Kostroff swears does exceptional work, Dr. Lyle Leipziger, went much better than expected. I had the surgery Tuesday morning, it lasted about 4 hours, and I was in recovery for a long while but got to a regular room by that evening. I consider this preventive surgery a life-saving alternative to an 87% chance of getting breast cancer by the time I’m 70. They biopsied the three nodules found on the MRI in my left breast and I’ll have the results by tomorrow. I pray Dr. Kostroff calls with a boring report of everything is benign.

In retrospect, the decision to remove my breasts was a no-brainer, although it didn’t feel like it at the time. I watched my mom suffer an invasive form of breast cancer, endure surgery, chemo and radiation and I didn’t want to do that to my family or myself. I was 13 when my grandma died prematurely from cancer. My dad wasn’t even 70 when he died from cancer and even his mom had breast cancer. I inherited the breast cancer gene and after two biopsies in the past, I opted to be safe rather than sorry. With the option of reconstruction being covered by insurance companies by law, I will have nicer boobs than the 52 year old ones that served me very well thus far. I’ve cried so many tears at the thought of losing these fibrous lumps of fatty tissue, but now, I am relieved beyond compare. I won’t have to take Tamoxiphen. I won’t have to be screened every four months for the rest of my life and I will never have to have another mammogram, sonogram or MRI of my breast tissue again. Funny, but I still feel like the same Cheri even without my real breasts. I’m really looking forward to the last two surgeries when I get my new and improved boobies.

A really and truly blessed and grateful,
Cheri
Braca2 discussion continued…
by Cheri Crystal (Notes) on Friday, August 6, 2010 at 1:12am
This all happened so quickly that I didn’t have time to belabor a bilateral mastectomy decision for too long. I found out my mom tested positive for braca2, I scheduled us for genetic counseling, one sister has it too :(, my other sis and bro think ignorance is bliss, and I scheduled… a mammo, sono and visit with the breast surgeon pronto. She sent me for an MRI and the radiologist called to schedule me for a biopsy of the three nodules in my left breast. I already had two biopsies, one was a removal of a cluster of calcification and the other was also thank God benign, but could turn. I hated all the non-surgical options and feeling like a ticking time bomb with crappy odds and voila, breast cancer free. Love and hugs and thanks for all your continued love, support and friendship. I wasn’t sure if I should post this on Facebook, but if I can save just one woman from breast cancer, it’ll all be worth it.

JUST A FRIENDLY REMINDER: DO NOT NEGLECT YOUR HEALTH. GET ROUTINE MAMMOGRAMS AND CHECK-UPS! BE PROACTIVE.

The Miracle of Modern Medicine: Update B/L Mastectomy: Day Four
by Cheri Crystal (Notes) on Saturday, August 7, 2010 at 2:08pm
Things are moving along nicely. It’s day 4 status post surgical removal of my breasts with stage one of the reconstruction and I can honestly say I’m much better physically and emotionally than I ever expected. Someone once counseled me during my troubled youth suffering for years with a distorted body image that ‘I am not my body.’ The psychologist was right. It may have taken me 52 years to believe him, but this type of surgery, not being handed a cancer diagnosis and the outpouring of love and support have clinched it. I’m still me.

While I work in healthcare and see the hands people are dealt and how they deal with everything from amputations, advanced disease, chronic and debilitating illnesses that rob them of the quality of life, I don’t have to be reminded to be thankful for each and every day I can enjoy even the simplest of pleasures. Today I finally pooped and miracle of miracles—it started my day off perfectly! See, simple pleasures.

It’s hard to believe the surgery was Tuesday morning and here it is Saturday morning and I’m up and about. The exudates collecting in the drains is lessening, the pain is more sore than sharp, it comes and goes but mostly it’s there to remind me not to overdo it. I love Dr. Kostroff’s discharge instructions: “I know you’re a do-er…but Don’t!” This is very hard advice to follow but my chest screams at me when I don’t listen. Good thing or I’d have yanked out the drains by accident.

You know I’m truly on the mend when I whine that I’m suffering terminal boredom. I’m ready to run, jump, swim, and just get on with all the activities of daily living without restrictions. I’d kill for a long shower and shampoo. Still, I’m being a good little dietitian. I’m eating right, hydrating adequately and dreaming of the day I can resume my exercise.

Learning patience is virtue and fighting it every step of the way, I’m thankful for all my cherished friends and family. I’m being spoiled rotten and will try not to let it go to my head. Now fetch me my slippers! Kidding.

Healing begins in the mind. So does feeling worthy, smart, beautiful, sexy, and all that is good. Life’s trials remind us of this fact. It’s life. L’Chaim!

Love and hugs,
Cheri
CONSIDER PREVENTIVE SURGERY, DON’T DISMISS IT. EVERY WOMAN HAS TO DECIDE WHAT’S BEST FOR HER. I’M THE TYPE TO WORRY INCESSANTLY, WHICH WOULD SERIOUSLY IMPACT ON MY LIFE AND THOSE AROUND ME.
More Chatter from Cheri
by Cheri Crystal (Notes) on Sunday, August 8, 2010 at 12:36pm
Day 5 and I may have overdone it a bit yesterday so I’ll even the score and lay low today. Still, I feel pretty good, things are moving along nicely. The drains are quite annoying but there’s much less fluid collecting, which is a good sign. The drain on the left side is leaking making my armpit moist most of the time. It’s a bit yucky, but sterile gauze helps with that. I really can’t complain, so maybe I’ll even get some writing done today. My friend Joan Duncan wrote me a poem I simply must show off. Stay tuned for my next note.
Love and hugs,
Cheri

“You Can” by Joan M. Duncan
by Cheri Crystal (Notes) on Sunday, August 8, 2010 at 12:44pm
You Can

So you have survived your surgery
So you have been through hell
So you have beaten the odds

So you have risen like the phoenix
Ascending like a golden avatar, brave and strong
So you can smile now
So you can belly-laugh now
So you can heal now

So you can hope again
So you can live again
So you can love again

So you can touch the sky
and with complete candor proclaim
you are ready for the long haul

So you can bow your head
and say thank you to the One most high
So you can breathe again

©2010 Joan M. Duncan
Took extra strength Tylenol at 10 pm last night–really needed it. Woke at 3 am and WOW, but I think the nerves woke up or something because I gave in and took 2 Vicodin. That was the best sleep until 6 am. Three hours of uninterrupted sleep, not counting the vivid dreams.

Yesterday Jo yelled at me (long distance) for using deodorant–reminder: keep complaints of burning armpits to myself. Okay, so smelling is preferable to fire in the tender area. Just don’t get too close.

Today, before Alan left for the office, he said it’s my breasts, but to try not to get into trouble the hour he’s gone. As if I can’t behave myself for a whole hour! Hrmpfff.

There are birds or crustys or God knows what in my hair. Still, I will be patient and considerate and not wake Sara up at 6:45 am to unload the dishwasher and empty the sink so she can wash my hair. Nice of me, huh?

I just realized that at 4′ 11′ except for the stuff on the floor, counters and under the sink, there’s little I can reach without stretching my arms higher than I was supposed to this past week. I hope I didn’t do any damage. Even the microwave is way above my head. I designed the kitchen all wrong for a short person, not that there’s much space in which to improvise without knocking down walls and building out…still, it would help if I can walk on ceilings.

Today at 12:30 I am scheduled to see the breast surgeon and she’s going to be the woman I’ve been waiting for all my life, but ONLY if she takes out these drains. I will seriously pout and fight the urge to throw a tantrum if she leaves it for the plastic surgeon on Wednesday. Forgive me if I’m in a theatrical mood today or just behaving like a petulant child, but I own a t-shirt that reads “Drama Queen,” courtesy of Jo < thanks Sweetie> and if the t-shirt fits… 😉

Let’s see, what else? I will lose my current standing as Chief in Charge of the Complaint Department if I don’t let it all out. Oh yeah, I had the Vicodin–miracle drug (did I complain about it a few days ago? What did I know!?) I should have appreciated all the wonderful BMs I had yesterday to make up for lost time, but No! I didn’t say prayers of thanks. Now I may have to resort to wishful thinking for a few days if the plumbing gets clogged up again. There’s always liquid Drano.

I can’t wait to see my naked chest and hope Dr. Kostroff has to change these sweaty bandages. I can only hope. I had a walk last night and that did my mind a world of good, but I did get sweaty. If the feet work, use them I always say, sometimes.

I’m going into manufacturing cottage cheese or bake bread, TMI, so stop reading here if you don’t want to know, but all these heavy-duty antibiotics are allowing the yeast to go wild. Great!? Sigh.

I’ll write more after I’ve gone and come back from the doctor. Thanks for listening to my Rants by Cheri. Really, I’m good, I’m just getting antsy in the pantsy, in case you couldn’t tell.

Love and hugs,
You know who
Drama Queen
It’s All About Me
Too much sitting
blah, blah, blah
Day 8? I’m losing track of the days already.
by Cheri Crystal (Notes) on Wednesday, August 11, 2010 at 11:41pm
I seriously have my nights and days mixed up as my sleep patterns are screwy from St. Louis. Really folks, you can call me at 2:30 am and I’ll most probably be awake.
Today I saw the breast surgeon. He couldn’t get over that it’s only been one week post-op. It’s all the high quality protein, fruits, vegetables and whole grain breads and cereals I’m consuming. I’m also careful to remain adequately hydrated to metabolize this nourishing food in order to promote healing. It pays to know a good dietitian, lol, and I am listening to myself for a change. You can tell I’m very anxious to get on with my life and move about at will.

As I continue to enjoy and appreciate all of your comments, I can finally say, I may shower with my back to the water. While I have to be careful to avoid soaking the steri-stips, the stitches have been removed, and I’m healing nicely. I have to lay low another two weeks. I can do this.

Thank you all for listening and for everything.You guys have been amazingly supportive in my time of need. How do I ever thank you enough?

Love, Cheri with the perky, albeit temporary, boobs, lol. Looking forward to the softer implants…very much.
Lymph Nodes are Clean
by Cheri Crystal (Notes) on Thursday, August 12, 2010 at 1:12pm
Lymph Nodes are Clean! Doing a gentle dance without lifting my arms above my elbows and being careful not to shake my boobs, booty or otherwise. Actually, I’m doing a virtual dance, it’s my safest bet.

On a delightful note, I showered today. Come on over and smell how clean, lol. I had to keep my back to the water faucet, but I managed nicely and feel better. Aside for my painful armpits and sharp twinges every now and then on or about my chest, I’m doing fine and dandy. No complaints.

The only thing that has me bummed is that the surgeon said I can’t go for these walks, especially in the heat and humidity. Whahhh, I’m already showing signs of a big bum. Oh well, I’ll behave. Warning: I may be crankier than usual without my daily walks. Just saying.

I’m convinced that the love and support I have from everyone is why I’m healing right on schedule. I wouldn’t dare do otherwise and suffer the consequences of letting you all down.

On this note, I wish you all a fantabulous day and an even better tomorrow. I’m taking it easy. I’ll read, revise my novel, perhaps I’ll promote my Wet and Wild story coming out tomorrow and try not to be jealous when my characters have all the fun at a water park.

Take care all~!

Love and hugs,

Cheri

Three weeks today I had a double mastectomy
by Cheri Crystal (Notes) on Tuesday, August 24, 2010 at 5:34pm
You know it’s time to go back to work when being home is just too boring, you’re easily distracted, the weather sucks and the pain isn’t bad enough to justify pain meds, but you’re still not allowed to do anything strenuous. I didn’t think I’d say this so soon, but I’m ready to go back to work or at the very least, start exercising again. I’m swim-deprived. That just about sums up my mood. Still, I’m thankful these past three weeks went better than I expected. I’ve been reading a lot, I got to take my middle son to college, go to Newport, and I’ve made some progress revising my novel to get it ready for submission. I need to promote Wet and Wild and think I should offer a free copy. The thought of getting Wet and Wild right about now is so enticing. It feels more like a wet spring than the end of the summer. Swimming outdoors isn’t even an option even if I were allowed to use my arms. I imagine Splish Splash, the LI water park is not too crowded today, if it’s even still operating. Oh well, I will have to write something new, fun, exciting and get my brain cells out of this funk.

A more cheerful Cheri later, I promise.
One month and three days after double mastectomy
by Cheri Crystal (Notes) on Saturday, September 4, 2010 at 12:31am
I can’t believe it’s been four weeks and three days since my bilateral mastectomy with reconstruction due to having inherited the Braca2 genetic mutation. On Wednesday, the surgeon filled the breast extenders with 50 cc saline in each breast to stretch the skin. This will allow the skin to accommodate the implants in October when he switches the extenders for silicone implants. I still can’t get over how perky my boobs are. I put on a bathing suit today and walked back and forth in the pool. What a great feeling to be submerged in water even if I couldn’t do my laps just yet. With Hurricane Earl on the way, I admit my breasts are acting like a barometer and I do feel more sore today than yesterday, but it’s not intolerable and I’m not taking anything for pain. The surgeon said I can resume the treadmill and any other exercise from the waist down–whoo hoo! I just have to be careful and go slow with my upper body. Believe me, my chest screams if I do anything dumb and so I’m behaving myself.

On that note, I’m still relieved it’s over, happy I drastically reduced my risk of breast cancer and at peace with my decision. My next quest is how big should I go? I’m leaning towards a C-cup, but a full B would be okay too. This should afford me the most comfort while not appearing too top heavy for a woman 4’11 1/2″ tall. Practical, no? Recommendations welcome, lol.

My breast implant BURPS. OH NO!!!
by Cheri Crystal (Notes) on Monday, October 25, 2010 at 11:55pm
Okay, so I’m status post surgery by let’s see how many days? Oh yeah, 4 days, and I feel pretty good. Soreness and shooting pains less frequent, a lot less frequent, but now I have this pesky side effect from the breast implant on the right side. MY RIGHT BOOB BURPS! THIS IS NOT FUNNY. AND JO’S SUGGESTION THAT I ENTERTAIN GUESTS WITH MY BURPING BOOB IS REALLY NOT FUNNY.

I sure hope this is temporary. Please tell me this is temporary. I see the surgeon on Wednesday. I have my first question ready and will try not to bombard him with it the minute he walks in the exam room. I said “I’ll try” 😉

OF COURSE, IF I CAN SYNCHRONIZE THE RIGHT AND LEFT BOOBS SO THAT THE RESULTING PERCUSSION OF WIND PLAYS A PLEASING TUNE…WE’LL TALK.

Cheri

I am so very truly blessed. My Sara wrote this for me–talk about happy tears…
by Cheri Crystal (Notes) on Tuesday, April 19, 2011 at 5:56pm
Dear Momma,
Out of all the days in the year, this is one that really matters to me. The birth of my mother … the creation of the most passionate, loving and energetic woman I know. Not many people can say that their mom had a dream and really went for it. Many people go through life thinking what if. You go through life thinking why not. I’m glad to have someone so influential in my life. Your daily actions impact me and how I will approach things in the future. Even when the going gets tough, you stay strong and hold it out because you and I both know that in the end, things will work themselves out. I really do admire you for this. Going through a double mastectomy before anyone else in your family really shows how brave you are. I’m proud of you. Single handedly cooking a Passover dinner three years in a row is also a huge deal. Also, being able to pursue your dream as a writer takes a huge drive. You have that drive and it is one I need to gain. Anyway, today is your birthday and I hope that all your dreams and wishes come true. I love you so much… more than you love me! – Don’t try to fight me on this one. Happy birthday!
Love,
Sara

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