12/5/2009: Porn Star Nipples

"Wow, those are like porn star nipples."

My fat grafting and nipple reconstruction was on November, 19, 2009 at Georgetown University Hospital and took about an hour. I woke up from surgery with VERY sore legs. This is where they did liposuction and removed fat to transplant to my breast. I wasn't able to see what they had done to my nipples because I had these cones on to protect them. I felt like Madonna. I, of course, was in normal silly mode and making jokes about the situation and being able to poke people's eyes out with my massive nipples.

It was my boyfriend, Matt's, birthday the day of surgery and waiting in the car I had a cake, candles and plates. Despite the circumstances, my parents and I lit three candles representing past, present and future and sang happy birthday to him in the emergency parking garage. People must have thought we were crazy, but I didn't care -- we needed to celebrate.

I spent the weekend at my parents recovering and nursing my legs that were black and blue from the back of my knees to my hips. I knew it would end up being my legs that would cause the most issues. It was difficult to sleep on my side or even sit for a long period of time because I was so bruised. On day three I was allowed to remove my cones. My nipples were HUGE. My surgeon tried to warn me that they would be big because your body will reabsorb 50 percent of transferred tissue. It was difficult to get used to, since I have been without nipples for a year and a half, but slowly I started to like them. Once I had my stitches removed two weeks later they shrunk and softened.

I now have an appointment on December 28, 2009 to have color matching done for my tattooing. Everything is skin-tone right now, so I am going back to my original plastic surgeon, Dr. Wendy Gottlieb, to have my color(s) selected and then will have that done in February or March 2010 as the nipples need time to heal. I am looking forward to having everything done and being back to "normal." (Whatever that means.)

My friends who have seen my new nipples think they are porn star worthy since they are quite "perky" still. I am told that they will soften more over time, but they will stay pretty alert. I think I can deal with that ...

12/15/2009: A Night to Remember

“Remember taking the Neulasta shots after chemotherapy and how badly your joints ached? I think that was the worse part for me.”

“For me it was the pain of my hair falling out – no one told me it would HURT.”

It’s interesting how life let’s you go in different directions, but occasionally it will tug you back and force you to reflect on past experiences. This week our Susan G. Komen Race for the Cure team was honored with a dinner at Café Atlantico in D.C. We were ranked number three for fundraising for the month of October due to my friends and family aggressive fundraising over the last year. I was truly honored and grateful. Joining me at the dinner was my girlfriend Sarah.

The evening honored the top teams, which meant I was surrounded with fellow survivors of all ages and life experiences – but all amazing women with heroic stories. There were also national and international representatives from Susan G. Koman there and a young woman who works for the company that does all the advertising/registration for Race for the Cure in D.C.

The two women from Susan G. Komen were intrigued with my story and asked me many questions about my experience, specifically focusing on how young I am. Sarah spent some time retelling the hilarious and ironic stories that surrounded my journey – falling down the stairs at work, having her feel my expanders in the handicapped stall at work, getting hit by a car in the Harris Teeter parking lot, dropping my congratulations cake at my last chemotherapy treatment, and so on.

One woman I met, I instantly gravitated toward. Our timeframe for diagnosis and treatment was similar and I could tell that she, much like me, was still struggling psychologically. I explained that a lot of the events that transpired I couldn’t remember. She said there isn’t one moment that she forgets.

“But is there a day that goes by that you don’t think about it?” she asked.
I stopped for a moment as my throat and jaw gripped tightly … “No. I think about it every day,” I responded with a broken voice.
“Me too,” she said. “I can’t wait until I can go a whole day and feel normal again.”

I dropped Sarah off after an enlightening and emotionally evening. I called my mom (still my rock) and recounted the events of the evening. The tears streamed down my face as I told her about the friends and family members who attended the event and how they shared how difficult it was to watch a loved one fight through cancer – the feeling of helplessness. I continue to remind myself that this didn’t just happen to me, it happened to US. My story was not just my own, but one that was shared over and over again by friends and family. I hope that as I continue to heal and become stronger that my story will continue to help others.

11/16/2009: Eiffel in love with Paris

“Who just picks up and decides to go to Paris?” asked Meghan and Jorie.
“I guess I do,” I responded with a sly shrug.

There are a number of experiences in our lives that feed our soul. These experiences or moments can be counted on one hand and will forever be imprinted on our memory. Paris marked one of those moments for me.

All my life I have dreamt of visiting Paris. I even took five years of French in school learning about the language and culture. Yet I was always waiting for the right time, or for my finances to be in order, or to have a significant other to share the experience … until I finally woke up one day and thought to myself, what am I waiting for? I deserve this. I have the time, the money and friends who would go with me.

As fate would have it, one of my closest girlfriends, Sarah, needed to escape town just as badly as I did. So we literally booked a trip and took off to Paris on an adventure.

In the midst of lighting a candle for my grandmother in the Sacre Coeur, standing in amazement in front of Notre-Dame, speaking my rusty French with some amazing people I met, riding a statue of a lion at Luxembourg, walking dwarfed in the hall of mirrors in the Chateau de Versailles and sipping cappuccinos in Montmartre with my incredible friend, Sarah, I realized how badly I needed this vacation.

I had taken my summer off from surgery and I thought that would be enough time to give me the psychological and physical break I desperately needed -- but I was wrong. Paris was certainly a welcomed diversion from my surgery this Thursday, but it does not change the fact that I am scared to death. Not just scared of surgery -- it’s much more complicated than that.

You see, every time I go through surgery (and this will be my tenth surgery in 23 months) I have to recover which takes weeks or months. Additionally, I have to learn to accept my deformed body all over again. I understand that I am moving toward a more “normal” state with my physical appearance, but it doesn't change the fact that it is scarring beyond the physical incisions. It is a growing process.

Life is all about learning and growing. I finally took that dream trip that fed my soul and once again I am desperately trying to learn to see myself as imperfectly perfect.

Please keep me in your thoughts and prayers as I go through surgery on Thursday morning at Georgetown University Hospital. I'm calling on angels ...

10/21/2009: Saddle Bags?

*deep breath* I rolled the piece of gum in my mouth into a ball with my tongue and pressed it against the inside of my top molars. *deep breath* I walked across the room barefoot and breathed in the smell of the stinging alcohol in the antibacterial hand sanitizer. *deep breath* I reached the pastel pink wall where the sun rays danced along the scuffed surface. *deep breath* I turned my back to the wall, looked straight ahead and dropped my medical gown to my wrists. *exhale*

Dr. Nahabedian and his medical assistant Michael spoke to one another in excitement as they reviewed their “work” from my surgery in May. They have never seen an S-Gap procedure long-term and are pleased with my amazing progress. I shared with them that now that my breast has settled I have a dent that runs horizontally across the top of the left breast.

I stood in front of my surgeon and his assistant in my black and white striped panties (which have been coined my “breakout” underwear since I wear them every time I get out of the hospital). They proceeded to pinch my stomach and thighs looking for fat that they can use to transplant into the dent. It is called fat grafting. Dr. Nahabedian ran his finger in a circle around the outside of my thigh.

“You have a little saddle bag we can use.”
“Do you know how offensive that is to say to a woman?”

Dr. Nahabedian laughed and Michael looked very apologetic. (Michael takes everything super serious and doesn’t really get my sarcasm.) Dr. Nahabedian told me to think of fat grafting as a mini liposuction. I basically can choose different places on my body to have him suck out fat, like my (ahem!) saddle bags and that fat will be transferred into the dent in the breast. Amazing process! I was told that I am not allowed to lose any more weight since I am now a whopping 100 pounds. Dr. Nahabedian said he would actually love if I could gain a couple of pounds prior to surgery.

I am having surgery on November 19.

I am told that your body reabsorbs 50 percent of the fat that is transplanted, so sometimes you have to have this procedure twice. (Hopefully mine is a one-time deal.) At the same time that I have my mini liposuction/fat grafting, Dr. Nahabedian is also doing nipple reconstruction. I should get more details in the coming weeks which I will share with you all as I have every other step of the process.

My friends have asked if I am excited or nervous about the upcoming surgery and honestly, I am indifferent. After each surgery I go through a difficult phase of coming to terms with my body again and making peace with the changes – and it is emotionally and physically exhausting. I know I am moving in a positive direction, but it is still hard. The journey continues ...

9/19/2009: The Fuzz

Standing in the shower I ran my finger across the round white scar next to my left breast. My lips pursed and my forehead crinkled as I desperately searched for the memory that would reveal the reason for this scar. Where did you come from? And why do you look like a shiny pearl now that my golden tan has faded?

At gatherings with my friends we talk about how I have been feeling and my recent health. My response lately has been, “I’m great. I’m on a surgery break.” Other people who don’t know about my journey are quickly brought up to speed and are told that I am a cancer survivor. They listen to stories of my treatment and how strong I was through the process. Words like hero and brave are used to describe me. I find myself listening to the stories as though I am hearing them for the first time -- as though I am having an out of body experience. These stories no longer belong to me ...

I haven’t written in awhile because I wasn’t quite sure how to explain what I have been experiencing. There are huge gaps in the last 21 months that I don’t remember at all, or it takes time to recall the specific events that occurred. I’m not quite sure I really want to remember all of it, to be quite honest.

I know that when people experience trauma in their lives that they subconsciously can block out experiences. I don’t think I necessarily have repressed memory, but there are certainly some moments in my journey that are very fuzzy. Now, the fact that I was on really strong pain pills over the course of nine surgeries can be blamed for some of that “fuzz,” but I honestly believe it is deeper.

Now don’t start worrying, please. I have done some research and am not falling into any of the bad side effects of repressed memory, which can be anything from substance abuse and eating disorders to depression and suicide. I am very happy and am slowly coming to terms with the whirlwind of my journey. Actually, I am taking a vacation to Paris at the end of October. I am so incredibly excited. It is a destination I have wanted to go for a very long time and I deserve it.

I have come to realize that my journey is much bigger than I am. My friends and family retell my stories, because my stories were theirs, too. We all experienced my fight against cancer together. I was never alone ...

8/27/2009: The Result

With my head against my steering wheel I listened to the sound of my tears hitting against the paper on my lap. *Pat, pat, pat*

I took another breath and no sound came out of my body as another wave of emotion rushed over me. It was as though I was screaming under water and the noise was encapsulated in each tiny bubble that rushed from my mouth up toward the surface of the water.

I crumpled the piece of paper and clutched it to my chest. I repeated the last sentence aloud three times – No evidence of metastatic disease. No evidence of metastatic disease. No evidence of metastatic disease.

I had once again threw cancer the middle finger, ran like the gingerbread man, passed “Go” and collected $200 and cheated death – my PETScan was normal. For once being normal is more than good enough for me.

I had my PETScan last Friday at Reston Hospital. It was supposed to be two weeks ago, but there were some miscommunications and approvals that needed to happen with my new health insurance. Thanks Blue Cross Blue Shield PPO for the complication! So for the last two weeks I have been unable to eat or sleep well due to my anxiety over the pending test. So, I finally had my test on Friday and it was the same routine I have gone through time and time again – fasting, IV, blood sugar check, radioactive injection, wait 45 minutes, under the machine for 25 with my arms over my head in a freezing trailer.

The test showed no cancer and no significant change from my last “clean” PETScan. It did find a new postop change in the left buttock (from my bypass and transplant surgery in May) simply indicating a new surgical site. One finding I was not expecting was that the radiation damage to my left lung has “decreased significantly since prior study.” This is the area my oncologist wanted to keep an eye on to make sure it healed properly.

Who knew my little body had so much vigor after all these months of treatment!?

8/6/09: Practicing My Poker Face

The past few weeks it has been a challenge to keep my poker face. I notice that I am having trouble eating, sleeping and controling my emotions. Just this week I became very biting in conversations with two people close to me – annoying and confusing them. I try so hard to control what I am feeling, or express it in a coherent way, but I never seem to get it right.

I have a friend who battled testicular cancer over the past month. He is athletic, vibrant, young and successful – but not safe from cancer. I met him the night he was diagnosed and talked with him until the early hours of the morning while he suffered from insomnia leading up to the beginning of his radiation. He had surgery and three weeks of radiation and is healing beautifully. He still is baffled by the fact that he had cancer. I told him that would never go away.

Two other friends I met via my blog while going through treatment have both been diagnosed again with cancer. One friend has colorectal cancer and recently they found nodules that were abnormal. He has started chemotherapy again. And my dear girlfriend who kicked cancer’s butt and was growing out the most beautiful brunette locks found another lump. Despite aggressive chemotherapy and a bilateral mastectomy – residual cancer remained in her body. She will undergo radiation and then additional chemotherapy. She is one of the most amazing women I know. As I listened to her news over the phone I wrapped my other arm tightly around my heaving torso. I listened to her complain about having a new scar and not being able to wear slutty tops anymore and how she was going to be sad if she had to “shave her mullet and start from scratch.” We grasp to those things which are easiest for us to wrap our thoughts around – unfortunately this isn’t something that can be wrapped neatly with a bow placed on top. She continues to say that she has three reasons for doing all this again – her husband and two beautiful children. She is such a beautiful person.

I ache for my friends, but selfishly I fear for my own future. It is easy for me to block out pieces of the last nineteen months and blend in with all the other almost-30-somethings. You can’t see my scars and my short bob (now filled with sunkissed red highlights) does not show evidence of ever having had chemotherapy. I look normal – but I am far from it. I survived breast cancer as a 26 year old and I continue to deal with the physical and psychological scars. I am still anemic, my arm swells from lymphadema, my nails are still discolored and brittle, any injuries take SO much longer to heal, my left breast has a dent, my tastebuds are different – but I am alive and no longer look sick.

Tomorrow I will have a PETScan. It has been four months since my last one and I am extremely nervous considering the recent news of my friends. I continue to think positively, because that’s all I know how to do, but it doesn’t change the fact that the fear still exists. Just because I look healthy, doesn’t mean that this is over for me. My journey continues ...