Monday, December 16, 2013

2's my favorite 1

I know you are all wondering if I really did it. You are all thinking to yourself, hey, I wonder if J really did get married this past October. She said she would, but she never confirmed via blog post, so maybe she pulled a runaway bride.

Well, sorry to disappoint but I did NOT pull a runaway bride. On October 12th I got married. Kevin and I had a beautiful, "let's get this done," 6 minute outdoor ceremony. We declared our undying love and dedication to each other surrounded by our family and friends, and it was everything I imagined it to be.

And then we partied. We celebrated with all our loved ones and it was just so amazing and special. I think I told every person who I came in contact with that I loved them, and you all better believe that I meant it. If for some reason I missed you, just know that I LOVE YOU! I think I may have the biggest supportive group of family and friends in the world (OK, not counting you Bat Kid, your support group is pretty impressive too). And now Kevin and his family are part of mine, and I am one lucky girl.

I've read multiple posts over the past months about husbands and boyfriends leaving their loved ones behind as they go through the most difficult battle of their life, cancer. When I tell Kevin that he is something special, he claims that any man would stick by his woman's side during her toughest times, but that's sadly not true. Even before our wedding vows, even before we said in front of everyone, "through sickness and health," I knew that he could step up to the plate. I just want every woman who has been let down by her man before know that there are good ones out there. There are dedicated, strong men, who will stick by your side and take care of you when you need them the most. I am lucky to know many of them. My family is full of them! My dad never left my mom's side, and Kevin will never leave mine.

Speaking of my mom, she would have loved Kevin. I know it. And I know she would have loved my wedding. I wore her wedding dress and I felt like a princess in it. A bad ass, cancer kicking princess to be exact! Just like my momma.

Thank you to everyone who came to my wedding. Thank you to all my friends and family. Thank you to Kevin for being all that I could ask for (and even a little more). Thank you to everyone who reads this blog. You all keep me sane, and I am sure I will continue to need your support as the years fly by.

- J.

Wednesday, October 9, 2013

Life's a Game Played by Everyone, and Love is the Prize

While in Michigan for a friend's wedding, I received some pretty awesome news.

I had made up my mind, psyched myself up, that no matter what the results of my CA-125 blood test results turn out to be, it doesn't mean I have ovarian cancer. Either our little birth control diagnostic test will have worked, or the test results will still be high.  If the results are still high, we'll just have to do some more testing. No big deal. Just a new adventure for me. This number was not going to be the final be all, say all, of an ovarian cancer diagnosis.

When my cell phone rang I recognized the number immediately. I took a deep breath and answered the phone. The usual nurse I speak to, Pia, was on the other end. She started the call off with, "I just wanted to call you with some good news!" I think I was holding my breath because I exhaled a great sigh of relief. She told me that my CA-125 count had fallen down to the normal range! I told her how happy and excited I was to hear this news. She said my doctor may want me to take another test in a couple of months, but he didn't specify. He just wanted her to call me immediately. She then wished me a happy upcoming wedding day (he had written down the day in my chart) and we hung up.

Thank god this test was a success! Taking the birth control was worth it! Even though I bled for an entire month, was a bloated, moody mess - it was all worth it! Of course I stopped the birth control immediately after the one month was up. Being on it was such a nightmare. Ugh! But it helped me pass my test, and that's all that matters.

Now I can focus on an entirely different, new path in my life. Marriage! On October 12th, I am getting married and not the tiniest inkling of health concerns will be on my mind. I will start my married life with a clean bill of health, marrying my man who loves me for who I am - fake boobs, scars, and all the rest.

- J.

Monday, August 26, 2013

Vacation and Birth Control

It's been awhile my loyal blog readers and I apologize. You'll forgive me though when you hear what I've been up to. I was on a month long vacation. A real vacation! Not a cancer related one. My vacation consisted of relaxing, the Yuengling brewery, the PA Grand Canyon (yes that exists), wedding planning, and a road trip down to Disney for quite the magical time.

Of course, sprinkled within all these fun activities were a couple of doctor appointments. My first one was my yearly check up with my breast surgeon. She is still very pleased with how everything looks and she said everything felt fine. We discussed future plans and she was a little concerned to hear about my high CA-125 test results.

Ah, yes, the CA-125... I took the second blood test as prescribed by my OBGYN. I had an appointment with him on July 30th. The second test came back higher than the first. Ugh. My first score was a 47 and the second 53. He is concerned because the score went up but he is still convinced it is my endometriosis because my ultrasound came back clean (woo). He wants to do a diagnostic test on me. He wants me to take birth control, take the blood test again, and hope that the test results are lower. The theory is that the birth control will calm everything down.

Now, if you know me I've ademently spoken out against taken birth control. I didn't want a single extra ounce of estrogen in this delicate body of mine. Even when OBGYN after OBGYN recommended birth control for my horrible cramps I always declined. Did they even read the family history section on my chart? I stand by my teenage self and still believe that I made the right decision all these years. But this time things are different. I now need to worry about my ovaries. I no longer have breasts, and ovaries react differently to birth control, so I agreed to take it for diagnostic purposes only. It is also the lowest dose of estrogen and only for a short time.

Well, I don't know how you ladies do it! I started my first pill on the first day of my period as prescribed by my doctor (which was when I was in Disney, heh). Now it's been two weeks and my period hasn't stopped! Ack!! It's much lighter some days but is always there. I also have awful cramps and bloating like crazy. If just a low dose of estrogen does this to me I simply can't! My body is rebelling against me and I don't blame it, I am messing with its carefully crafted hormonal balance. I called my doctor on Friday to make sure these side effects were normal. He said yes and it usually takes three months for your body to become accustomed to it. I told him no way, I don't have three months, I've got an October wedding to plan! I agreed to finish the pack, take the blood test, and hope that it was indeed my endometriosis causing the high results, otherwise we have to find a new diagnostic plan.

Sigh, the trials and tribulations of being a woman.

- J.

Wednesday, July 10, 2013

Life is a Test and I get Bad Marks

I always did OK in school. My grades were pretty average... A's, B's, C's, whatever. I tried really hard to do well, but sometimes even at my best, I just couldn't get that A. (Or break 1000 in the SATs, but that's another story). Then there are the students who really don't have to study hard or even do homework to get that damn elusive A. I feel like that student in the real life world of my health. Only here, you don't want high marks.

Let me explain, remember when I went for blood work and an ultrasound? Well, I received a call from the doctor's office last month telling me that he wants me to take the CA-125 test over again because, "he thinks it was a false reading." So I cautiously ask, "does that mean the results are high?" The medical assistant responds with, "yes, but the doctor thinks it was a false reading." Ok. I got that. How confident is he with that assessment? I guess we'll see. I am going for blood work this month, so he'll have something to compare the first test to. High marks. Not for the win this time around.

So I did lots of research on the CA-125 via Dr. Google. I know you are surprised by this. I also asked many knowledgeable woman who have first hand experience with the test, and I've come to the conclusion that serial CA-125 tests will be more accurate. Apparently the tests can come back high in pre-menopausal women or just from being a runner. So having a chart of all the tests will be more accurate. My dad forwarded me this recent interesting study done, entitled, "Refining Estimates of Risk for Breast and Ovarian Cancer in BRCA1 and BRCA2 Carriers." I like that low 16% risk I have for Ovarian Cancer, I just hope for once my body doesn't feel like being an overachiever and tries to stick me in that 16%!

I have an appointment with my surgical OBGYN at the end of this month and I will certainly have more to report. For now, can't I just fail at one of life's damn health tests?

- J.

Wednesday, June 19, 2013

My New Normal

My new normal consists of taking pictures of my foobs (fake + boobs = foobs) when I am concerned something is wrong and I have no one around to show. Kevin is the lucky recipient of said foob pictures. No, I don't send the pictures to his email, I just wait until he comes home to ask his opinion. Lucky him!

Last night's impromptu photo shoot came about after a pretty intense exercise session on my spin bike. I removed my sports bra and there were these huge irregularly shaped red rashes on my skin around my scars. Sometimes I get little red marks after running or sleeping, but nothing this big and never on both!

I quickly grabbed my cell phone and snapped a bunch of pictures. My foobs were loving life, they always knew modeling was in their near future. They are so vain! Once I felt satisfied that I captured the rashes perfectly I jumped in the shower. By the time I finished showering the red marks were long gone. But I was still somewhat concerned.

Kevin and I decided that my skin was just really flushed from exercising. My face gets pretty red after a run in the heat so why wouldn't my foobs? It's just weird because my real breasts never did that. My skin protecting my foobs has changed rather dramatically since my double mastectomy. It looks a little shiny, feels strangely smooth / slippery, while at the same time it has little bumps on the underside. I don't get it! It's the same skin from before! But I guess if you've been traumatized like my poor chest has, you come out of it a little different.

- J.

Tuesday, June 4, 2013

Something You Should Never Say to a Cancer Survivor

This past Friday I had a blood work appointment and an ultrasound appointment. My OB/GYN wanted to check my CA 125 (cancer antigen 125, which is a tumor marker for ovarian cancer) and my ovaries.

The blood work appointment went well. The woman who took my blood was so nice. She used a butterfly needle on me and it was painless! (Except for that damn tourniquet). I didn't even feel her stick me. Piece of cake!

Then I headed off to my ultrasound appointment. Walking into the ambulatory waiting room, filling out all the paperwork, and waiting for my name to be called was just so nerve wracking! I knew nothing would be revealed to me by the ultrasound tech, but I was so nervous just being there. Also, I had to have a bladder full of liquid for the first half of the ultrasound so I felt like I was going to EXPLODE! Finally my name was called and I followed the technician to a back room.

She performed the first part of the ultrasound and I think her goal was to make me pee my pants. It was cool though to look at the monitor and see my black blob of a bladder moving around on the screen as she took pics of my ovaries. I then had to drain my bladder for the next part of the ultrasound which was a transvaginal ultrasound. That means the technician bounces sound waves off of my inner parts to see what's going on with all my lady parts. It was all rather easy peasy and over in 15 minutes.

The technician waited for me to change so she could escort me down the maze like hallway. As I met up with her she asked me, while gripping my chart in her hands to her chest, "Did you bring anyone with you today?" BOOM! Time stands still. "Uh, no..." I stammer out. Should I have? Is something wrong? Why would she ask that question unless something is wrong? "OK!" She says, "Then you can go out this back entrance."

Oh. OH! Ooohhhhh! She was just showing me an alternative route. Why didn't she just say so? The last time I heard that phrase it was followed by "the biopsy came back positive for cancer." And at that time I didn't bring anyone with me because I figured I didn't need to. Just like for the ultrasound, I felt like I didn't need to bring anyone. So thank goodness no surprises were thrown my way on Friday. There has GOT to be a better way to say, "would you like to go back to the waiting area to exit, or would you like to exit through the super secret back way?"

- J.

Friday, May 17, 2013

It is our choices that show what we truly are...

OK. I've been trying SO hard to not blog about Angelina Jolie and her recent announcement of her double mastectomy. I tried! I know you are rolling your eyes and groaning at this post. I don't blame you. But the news is EVERYWHERE!

I was first tipped off to this news story via c.d. and Twitter. I read Angelina's op-ed piece, "My Medical Choice," in The New York Times and thought "you go girl!" I was proud of her for taking control of her life and also discussing it openly to all of us. Angie and I now have something in common! I would have never imagined that. 

I then knew that the Twitter trolls would be out in full force, so of course I needed to see what the common Twitter folks were saying. Some were giving her props for being so courageous. Then there were the "Angie cut off her boobies?!" tweets, the "she is no longer on my to do list" tweets, and the "I'm offended that she cut off her boobs and is talking about it" tweets. Ugh. Thank you Internet for making everyone so scholarly in the ways of double mastectomies and women's bodies. I expected all of this and it amused me to see others put these trolls in their place. 

Then came the articles, and that's when I couldn't take it any more. Articles written by doctors, nutritionists, news anchors, etc. claiming that Angie self mutilated her body. If only she ate right she wouldn't need to be scared of breast cancer! Double mastectomies are primitive and don't cure breast cancer! She still may get it! She made the wrong decision!

OK! Hold up! How dare anyone tell somebody that they made the wrong decision about their health. First of all, it's none of your damn business! She did what she felt was right for her, her family supported her 100%, and that's all that matters. She watched her mother die from ovarian cancer, she is BRCA 1 positive herself. She did what was right for her and how self righteous you must be to say otherwise or question her decision.

I also find comments like these insulting to the many women who have had double mastectomies. I've never questioned if I did the right thing. Never! I watched as my mother battled breast cancer for 12 years and then pass away from it. I was diagnosed with breast cancer at 29. I then found out I was BRCA 2 positive. It was a no brainer to me. My mom went the lumpectomy / radiation route and in the end it failed her. I am trying something different. Say to me that I maimed myself for no reason. Do it and see what happens. My "don't feed the trolls" rule may not apply.

I don't think anyone who has had to agonize over such a decision actually thinks they are then invincible from breast cancer, or any other cancer for that fact, after their double mastectomy. If anything, it made me more aware of my mortality.

The one thing I do take issue with (and this may be because she was not diagnosed with that dreaded "cancer" word) is Angelina's somewhat blasé approach to the double mastectomy. She said it was pretty easy and she returned back to her normal working life in no time. I know she is probably trying to reassure women that if they are faced with losing their breasts it will all be ok, but it is a tough journey. The pain. The sleepless nights. Missing out on doing just the regular activities you love. The actual scars. The emotional pain. The daily leftover physical aches and pains that linger to this day. It's rough. But if you feel deep down in your heart that you are making the right decision, it WILL be worth it. We are so different and our paths are all unique. What works for one may not work for the other. Don't be afraid to share your story, you just may comfort someone who is starting their journey.

I'm not one bit ashamed of the choice I made. I'm proud. I'll tell anyone who wants to listen. I made the right choice for me and I'm not sorry.

- J.

Monday, April 29, 2013

A Life I Don't Know How To Live In

I so desperately need a "how to be a cancer survivor" booklet, pamphlet, brochure, whatever!

When I was diagnosed there was so much information about breast cancer: what is currently happening in my body, what to expect during and after surgery, how the recovery process will go, the possible side effects, how to exercise during physical therapy, etc etc. I was overwhelmed at times, but also thankful for this wealth of information. I had no problem making the decisions I needed to for my health and I felt confident in the path I was choosing.

I am having a much harder time settling in to my proud cancer-free status. I feel as if cancer has completely robbed me of the normal, carefree life I used to lead. I felt pretty good after my exchange surgery. I felt strong and proud in my cancer survivor role. But my strength and pride seem to be crumbling each day as I just try to return to my normal life. I don't know why this is hitting me all of the sudden right now. It's been over a year now since I've been declared cancer free.

My allergies are killing me this spring. It's causing me some dizziness, light headedness, and an all around feeling of not being able to concentrate. This hit me hard during the weekend and I started to panic. Even this morning on my way to work I had to struggle with myself to not get off the train and just head back home. I just don't feel right and it's because of my damn allergies. I know this, but I feel like I am hyper aware of how much I am not in control of what is happening in my body and that scares me at times.

I discussed with c.d. about going to talk to someone. I feel guilty though. What do I have to complain about really? I didn't have to go through chemo or radiation. I am not on any medication. I am cancer free... so what is my problem?

Any survivors out there who can recommend how my transition into survivorship can go more smoothly? I'll try anything!

- J.

Monday, April 15, 2013

Somewhere Out There

10. That's a big number. It's been 10 years to this day since you passed away. It seems like just yesterday. I replay the evening in my mind at times and it's always so crystal clear. You passed away peacefully in your home surrounded by family.

We had music playing. You know that Music Choice station on Comcast TV? We had that on; thanks to you mom I can never ever listen to that damn "Somewhere Out There" song without turning into a crying, snot puddle mess. Zoe was curled up in a little white fluff ball at the end of your bed. As the night went on and April 15th approached I whispered in your ear that I loved you and you responded with your eyes closed, "I love you too baby." Those words meant the world to me then and still do today. Around 12:30am you took your last breath and I knew everything would be different.

You were the best mom a girl could ask for. I look up to you and hope to have at least an ounce of the beauty, love, compassion, patience, and strength that you possessed. You were filled with wisdom and I was lucky enough to use your own words in my eulogy to you. You wrote in a card once how losing a loved one creates a scar on one's heart. Over time that scar fades a bit and becomes softer. It's always there, but it will always be a gentle, happy reminder of our loved one and all the good times you had together. I couldn't have said it better, and I wouldn't dare try.

I have so many wonderful memories of you. I never forget the good times! We had so many. I dream about you periodically. It's always nice to see your face, you're always smiling. I can still hear your voice, and I think about the things you'd say to me now. As I navigate through my life and deal with all the good and bad things it throws at me, I know you are beside me every step of the way.

I made this video for you just months after you passed away. I cherish it and am so happy I can watch it every day and see you and me together again.

I love you mom.

- J.

Monday, April 8, 2013

We’re all immortal until we have a name of what can kill us...

Can we talk about panic attacks for a post please? What the heck are they all about? I mean really. I'll be fine one minute and then the next minute I am totally psyching myself out.

About two weeks ago I felt like I was having abdomen problems so what do I do? I go exploring of course! I then find a bump. A really teeny tiny bump. Has that always been there? Is it new? What could it be?? So instead of ignoring it I made a doctor appointment. I needed a general physical and blood work done anyway... I show my doctor the bump. He was impressed that I even found it. Doctor, I had cancer, please, I will now find every lump / oddity in my body. He said it was just a cyst. He's felt millions of them, it's not attached to anything, and people get them there all the time. Whew. Safe. For now...

Damn you mind! Why can't you rest? I don't get panic attacks often. Actually, they are quite rare. But I had two small ones on Saturday. Two! One driving with c.d. and then one in the movie theater with Kev. Why? I'm not 100% sure. I had an awful headache while driving so that may have been why. Once one starts it's SO hard to talk myself out of it, but I was able to this time. I try to take really deep breaths and just tell myself it's a panic attack and nothing serious.

Trying to pinpoint the causes are important to me. Usually it's a pain that triggers it and then I think said pain must be leftover cancer cells. But this time I think the panic attacks were triggered by something different. Over the past couple of weeks two young breast cancer bloggers passed away at the ages of 29 (Bridget Spence) and 33 (Lisa Lynch). I was very very saddened to hear about their deaths and could not believe that breast cancer is still claiming such young lives. My mom passed away at the young age of 49 and my aunt at 42. I thought we were done with this. I thought progress was being made. Where is it? I demand it!

Speaking of my mommy, the 10 year anniversary of her death is a week away. I'm actually dreading it. Over the past years it has sucked once the day was here, but the dread never built like it is this year. Maybe I've just been thinking a lot about her lately.

I guess it just seems I have a lot going on in my head. How does one turn it all off? Can ex-cancer patients suffer from PTSD because I feel like I am going crazy over here!

- J.

* This post's title is a quote from Helen Cooksey in an interview she gave HERE with Dr. Susan Love. *

Thursday, March 21, 2013

Grateful is a Good Place to Wind up in Life

I know, I know. I've been a bad blogger. "Where is that damn Creative Cups review?!" you've been asking yourself for DAYS now. Well here it is! It was so much fun that I had to let it all soak in. I had to wade through picture after picture of one beautifully designed bra after another.

From the moment I walked in I knew I was about to participate in something special. The air in the room was just so positive. The 100+ bras were set up on long banquet tables with each of their stories standing near by on a placard. There was a piece of paper in front of the bras for the silent auction.

Just as I expected, each story that went along with every bra was interesting, inspirational, and thoughtful. The care and precision that went into each bra's creation was thought provoking and special.

Look at all these beautifully creative bras! I know! There are so many! They are all so artistic! You are feeling overwhelmed! Well, too bad! OK, I admit it. I was a bit overwhelmed myself. I wanted to read every story and really take in every bra but it was becoming an impossible task. I knew I had to purchase a Creative Cups book. In the book there is a professional portrait of each bra and the story that goes along with it. This has given me a better chance to read each story again and really think about the bra.

Even the back of each bra was crafted with loving detail. I would walk up and down the tables looking at both the front and back of all the bras. There was everything from ladybugs, to messages of hope, to recipes, to bottle caps, to filmstrips, to flowers, to bike pumps, to chains on the back clasps. Each bra was as different as the next!

I found this fundraiser to be quite different from others that I've attended. There was no pomp and circumstance. No one was patting a sponsor on the back. There was no chanting. Everyone there came to look at some beautiful artwork and to support a good cause. I spoke to amazing women who have been through hell and back and are still smiling. I bonded with some over my "Yes, they're fake t-shirt." It's amazing how many women came up to me and said they need to buy the shirt. There are so many of us out there! During the evening I was surrounded by my amazing and supportive co-workers. Also, C.D. and McCheese made the trek out to the event to celebrate with me and I couldn't thank them enough.

Pat Battle, an anchor for the NY local NBC news channel and a breast cancer survivor herself, was an amazing emcee for the event. She spoke briefly and the excitement from the evening was just emanating from her as the beautiful bras circulated behind her on a slideshow presentation.

Can you tell how excited I was to see my bra on display? I thought it looked beautiful on the bust and I felt very proud of the work that we put in to it. It was auctioned off for $155.00!! There was actually a bidding war towards the end of the evening on "Fancy Me a Heroine." I was so humbled by the two women who were bidding back and forth on it. I am glad my co-workers and I were able to raise that money to go to the NY Statewide Breast Cancer Hotline. I would be lying if I said I wasn't sad to part with it, but I know it is going to a good home for a good cause. I hope it brings as much joy to the person who won it as it did to me while I was creating it.

By the end of the night I felt so empowered, so supported, and so loved. I felt like I was on an emotional roller coaster, with only positive feelings of course. My night officially ended with C.D. and McCheese presenting me with a little cancerversary gift. They had created a scrapbook of my journey from the past year using pictures, parts of my blog posts and their own thoughts and feelings during that time. It is such a beautiful gift and something I will cherish for the rest of my life.

I am so lucky and grateful to be where I am today. The support I've received during this journey and that I continue to receive to this day from everyone around me is just tremendous. Thank you to Creative Cups for allowing me to express myself creatively, and putting together such a wonderful event. I look forward to the next one, whenever that may be!

One of our many quotes from the back of our bra from Betty Rollin:
“Awful things happen to an awful lot of us & it's a happy moment when you start noticing some kind of payoff. Cancer survivors for ex, notice that they're breathing in a way other people don't. And because they are breathing they are grateful in a way a lot of people aren't. And grateful is a good place to wind up in life. It beats poor me.”
- J.

P.S. I heard that the event raised over $70,000 for the Breast Cancer Hotline and Support Program. How amazing is that?!

Wednesday, March 13, 2013

Creativity Takes Courage

Tomorrow is the big day! The Creative Cups auction and reception will be taking over the Adelphi University campus. 100+ decorated bras will be displayed proudly in the University Center from 6:00pm - 9:00pm on March 14, 2013. Along with each bra comes a story behind it's creation.

I was lucky enough to see a sneak peek to tomorrow's evening. 14 bras were on display for a week leading up to the event. The 14 bras were amazing and the stories behind them were just so moving and courageous. I spent so much time in the room looking at each bra and absorbing the story and the motive behind its creation. I don't know how I am going to get through 100+ bras, but I am going to try my best!

There will be passed hors d'oeuvres, a fruit plate, a cheese platter, a dessert of some kind, and WINE! How can you pass up an evening like this? Good food, nice drinks, beautiful bras, and wonderful people, all for a good cause. Who could ask for anything more? Oh, and I will be rocking my "Yes, they're fake" shirt if that is any sort of incentive...

Hope to see you there!

- J.

Thursday, March 7, 2013

"Let's get this show on the road!" said my Ovaries

Nothing says "Time to wake up!!" like an early morning chat about one's ovaries and future babies!!

I finally got around to calling Dr. Blackwood the other day about my ONGYN's recommendation to do at least a low estrogen birth control pill. Remember THIS post from back in November? Yeah, I'm a procrastinator, don't even start. Dr. Blackwood called me back last night and left me a voicemail. She basically said she doesn't have the answer I am looking for. She said the birth control would be good for my ovaries, but in regards to the extra hormones there's no real concrete evidence that it helps or hurts. Things get especially dicey with my BRCA2 positive gene. She recommended that I call my Onc.

To be honest I don't know why I even bothered calling when I had already (sorta) made up my mind. I guess I was looking for reassurance. I am pretty sure I am going to do none of the recommendations from my OBGYN and just hope for the best. I think he will be a bit disappointed to hear that because he wants me to be proactive and I understand. It's just that two of the options are so extreme and the least aggressive option...well, I've never, ever wanted to take birth control. I never felt comfortable knowing there would be extra hormones in my body. What if I was taking birth control during the time my invasive micropapillary carcinoma was growing inside me? Would it still have been just 1mm? Would my lymph nodes still have been clear? I don't know the answers but I feel confident in my no birth control policy. I've been to many different OBGYN's and all but one tried to push the pill on me. I'm proud that I stood my ground!

But has the game changed now? I no longer have my breasts. It's ovary time! Do I now focus primarily on my ovaries? I am just so scared to put any bit of extra estrogen in my body. It just doesn't feel right. And what if I start taking the birth control in May? What if I want to have a baby in a year or so? It seems pointless to go on it for a year! I don't know...

And don't get me started about babies. Thanks to my health problems I feel pressured to have babies NOW so I can get everything down there removed before it decides to turn against me. It's all so overwhelming when I think about it. Kevin said all will be ok. This is the hand I was dealt and we will do what we have to do. And really, is one ever completely "ready" for children? At 30 I sure as hell don't feel ready but my ovaries are definitely ready to get this show on the road!!

- J.

PS Dr. Blackwood's office just called again. Ha. I am getting my pathology report faxed over to me so I can go through it with a fine toothed comb. I need to be sure I am making the best decision for my health. Oofta. Someone tell me I am doing everything right!!

Sunday, March 3, 2013

Creative Cups Invite!

Hey Everyone! Remember that post a while back about Creative Cups? Yes! No? Remember my co-workers and I were designing a bra for a fundraising event that will support the Adelphi NY Statewide Breast Cancer Hotline & Support Program? Yes! No? All the bras will be put on display and then auctioned off? Oh yeeeeahhhh!

Well it's that time! On Thursday, March 14th 2013 the Creative Cups Auction and Reception will be here! The doors open at 5:30pm and the reception goes from 6:00 - 9:00pm. If you are interested in attending this awesome event, go HERE to register. It's for a great cause and you will get to see over 100+ beautifully decorated bras on display. And if one of them catches your eye you can even bid on it! I am so excited for this event. I can't wait to see everyone's creation! If you'd like more information, click on the images above.

And for a little sneak peak, here is our "Fancy me a Heroine" bra my co-workers and I created for this awesome gala and our story behind the bra.

This bra was created to honor strong female characters in film. Each woman depicted on this bra had roadblocks in life and issues to overcome; each woman won her battle with her own strong style and grace. When a woman is diagnosed with breast cancer she enters a personal battle in her life. Every woman deals with her diagnosis differently but each one is just as strong and brave as the next. All these women, in film and in real life, are powerful inspirations to people everywhere. We want to remind each woman who is currently fighting her own battle that she is not alone! She is standing amongst a sea of strong women who are there to help her and who happily welcome her to help pave the way towards a cure.
If you come to this awesome event make sure you say hi! And if you need any more information, please, please, please leave a comment and I'll tell you everything I know.
- J.

Thursday, February 28, 2013

Surgervercary... sorta...

I am going to continue to make up -versary words until I can no longer think of any.

So I am kinda celebrating the one year anniversary of my double mastectomy + reconstruction. I say kinda because if you've been following my blog I actually had my surgery on February 29, 2012. I celebrated a Leap Year by getting my breasts cut off! I don't mess around.

I think I feel a bit more emotional about this date than my cancerversary date. I'm not sure why. Maybe because I was so nervous and scared. Maybe because I knew it was so final, no looking back, no regrets. Maybe because I knew I had so many people cheering for me, both at the hospital and in spirit. I've never felt so sad, and angry, and pissed off, and supported, and loved, and cared for all at once!! It was exhausting!

My days at the hospital are a blur and come in little bursts of memories (thanks morphine and pain killers). I remember everyone visiting, telling the nurse I was convinced the morphine wasn't working, walking around with the catheter (unpleasant), trying to figure out who sent the flowers arranged as an adorable dog (thanks Shafran), calling the nurse twice in the middle of the night for more pain meds (as Kevin slept in the chair next to my bed the entire time), the PT making me walk up some stairs and declaring I don't need physical therapy (uh, what?), my roommate was lovely, and I emailed my coworkers to tell them I was high on painkillers but doing well.

Then there's this picture c.d. took of me the day after my surgery, March 1st. Yup. I'm super excited that the hospital offered Mrs. Dash in a packet. I can't remember what I put it on... meatloaf perhaps? This picture says it all. I just had my breasts removed and here I am surrounded by family and friends, loving life, and my Mrs. Dash packet.

Thank you to everyone who helped me remember to always keep laughing and smiling. I'm lucky to have you all around to make sure my sense of humor was not removed in surgery as well.

- J.

Friday, February 22, 2013

Stupid Sexy Double Mastectomy!

It was brought to my attention a couple of days ago that apparently Facebook deems mastectomy pictures porn. A courageous woman who runs the Stupid Dumb Breast Cancer Facebook page posted pictures of herself after her double mastectomy. One image shows her standing in front of a mirror after she was unwrapped, drains in place, scared and deflated. One image is of her and her husband holding hands, her chest proudly on display as she receives support from a loved one. Another image portrays a strong, beautiful woman holding her own chest as she accepts her scars and the battle she won.

This series of photographs really hit me hard. These photos were my exact emotions as I went through my own ordeal. At first, I wasn't even able to look at myself for days. When I was first unwrapped by my plastic surgeon I didn't even look. I couldn't! Pre-surgery, I researched photos online on surgeons websites and I was horrified at what I saw. I felt dejected. I felt scared. When I arrived home from the hospital I had Kevin take pictures of my chest. I wanted that to be my first peek at them. It wasn't so bad! I was lucky enough to be inflated a significant amount so I was truly impressed by what I saw. I was then able to look down for myself and come to terms with my new chest.

The next emotion I experienced and needed so badly, was acceptance from my loved ones. Kevin was a superstar and took care of me from day one. He tended to my drains, he made sure my bandages were not wet, he made sure there were no infections, and he made sure I was comfortable at all times. But then he had to go back to work. Who was going to take care of me now? Who could possibly handle the tragic deformities on my chest? Then I found out I was being quite overdramatic (shocking, I know). I asked my sister and c.d. if they would be willing to help me out. I gave them a long speech about how they could say no and I would not be offended. I mean, I couldn't even look at myself for days, how would someone else be able to? Without a blink of an eye they said of course! I needed help to cover my drain holes so they wouldn't get infected. I needed help to put on my tight, painful bra. I needed help putting on deodorant (which other friends also helped in that area, thank god for that!). I had a whole army behind me and I was so grateful.

All this support lead me towards my final emotion which was being able to accept myself. If everyone else could accept me so easily, why couldn't I? Over time I was able to look in the mirror and not flinch at my own reflection. I can now look at my scars and my different looking breasts, not as deformities, but as battle wounds that will constantly remind me of the fighter I am. I can even joke about my new breasts (they have a great sense of humor).

Now we shall come full circle with this post. Wikipedia defines porn as, "the explicit portrayal of sexual subject matter for the purpose of sexual gratification." I am pretty sure these pictures were not posted to satisfy anyone's sexual gratification. I know she posted these pictures to inform everyone that breast cancer is not a pink ribbon, it is not sexy, and it is not a silent, shy disease. She posted these pictures to let her fellow survivors know they are not alone. Since my breast cancer diagnosis and double mastectomy I certainly do not plan on staying quiet and fading in to the background. I have changed both physically and emotionally because of what I had to endure. Facebook will not silence what this disease does to us. We all need support from everyone out there. How dare anyone try to stop that!

- J.

P.S. You can also find the Stupid Dumb Breast Cancer blog here. It's great!

Saturday, February 16, 2013

My Implants Think Less of You

I had dinner last night with a friend of mine who I see sporadically throughout the year. She knows all about what I went through over the past year and it was a pleasant evening that included delicious beer and wings. As we were saying our goodbyes she went to give me a hug, hesitantly of course because I saw her a lot when I had my expanders and I always warned people to hug gently. So again, I mentioned that I'd prefer a gentle hug (as I do to everyone nowadays). She said, "Still? My stepmom is able to hug with no problems."

At first this offhanded comment didn't bother me at all. I just explained that I am still not comfortable with my implants and when someone hugs me too hard, or the wrong way, it hurts and feels awful. So, you know, hugs shouldn't feel awful, so I'd prefer a gentle one. Then on my way home I thought a bit more about it. Her stepmom had a breast augmentation not a double mastectomy! That's not quite the same. Her stepmom has the luxury of having breast tissue between her skin and the implant so she gets some cushioning. Me on the other hand? I have a sudo-hard implant hanging out just under my skin and muscle so I don't get any padding. It's not pleasant.

I've encountered a couple other people who just don't seem to understand what a double mastectomy really is, and that's fine. I didn't know what one really entailed until I had to get one myself. They cut off your boobs right? Then put implants in right? It's not that difficult right? They'll be just like new right? Well, not quite. I had one person think that my expanders were my final breasts! Oh my god! How awful would that be?! Those were the worst things ever and if I had to live with them forever like that?! I can't even. AH! Thinking about them again still gives me the shivers. Eek!

A double mastectomy with reconstruction is not easy. No one ever said it was going to be. I am sure a breast augmentation isn't all fun and games at first either, but I assume that once you have it and you are healed you feel pretty much like yourself again, with bigger boobs. Now, I know this post may sound a bit hypocritical since I've never had a boob job myself, but I'm just riffing here. I'm just making observations on people's perception as someone who has had a double mastectomy herself.

I just hope no one gets offended when I no longer hug you with the strength I used to. It's not that I don't love ya any more, it's just that my implants think less of you.

- J.

Sunday, January 6, 2013

Everyone Learns Faster on Fire

It's my one year cancerversary! It's been exactly one year since I heard those awful, awful words, "the biopsy came back positive for cancer." What?! Really?! Are you sure?! Though, I can't say I was too surprised. Shocked, yes. Surprised, no. I am my mother's daughter after all, and she prepared me for all of this. But no matter how "prepared" you feel, hearing that you have cancer takes your breath away. It's one of the scariest moments of your life.

I've learned a lot about myself over the past year. I learned that I can handle a lot more than I thought I ever could. Like I have said before, I feel like I've been preparing for this for a long time. My mom taught me how to be strong. She taught me how to fight hard. And she taught me to never give up. When life gets tough, you don't sit around and have a pity party, you do something about it. And that's just what I did.

Yes, it was tough. At some points during my journey I felt quite weak, that maybe I made the wrong decision. But whenever I felt this way, I had my family and friends lifting me up and helping me along. When I was down and needed to vent I had people there to listen. When I felt inspired and badass I had people there to join me in my celebration.

Many things have changed about me, both physically and emotionally, but I am a better person for all of it. Today is my one year cancerversary. Today I celebrate the second chance I have been given.

- J.