3/25/2009: Lady's Got Back

Standing in front of Dr. Nahabadian I removed my gown as directed exposing my beautifully reconstructed right breast and my indention with darkened skin on my left side. His eyes immediately moved to my stomach and his lips curled to one side as though he was puzzled. He rolled forward on his stool and proceeded to run his fingertips down my stomach – as though he were performing a tummy tuck. “Nope, that’s not going to work. I’d have to cut you under the belly button from hip to hip to get the amount of skin and tissue I would need,” he traced imaginary lines with his fingers across my stomach. “You are just so tiny.” He instructed me to turn around where he performed the same kneading strokes over my left shoulder blade. “There’s not enough tissue to work with here either,” he said aloud even though we both knew it would be the case since he could barely pinch any tissue. “Go ahead and pull down your pants,” he asked. With my jeans around my ankles Dr. Nahabadian grabbed at the inside of my thigh. “Eh, still not enough,” he said. I looked at him with desperate eyes. I repeated over and over in my head, “Please find something – ANYTHING to make me whole again.” His eyes squinted in deep thought as his lips tightened. “Turn around for me,” he said nodding as though he had figured out the riddle. Lifting my thong strap he squeezed two handfuls at the top of my right butt cheek. “I knew you had it hiding somewhere,” he said as he gave me a little shake. I couldn’t help but laugh.

My surgery is scheduled for May 7. The procedure takes five hours. I will then spend three days in the ICU, have to take two weeks off of work and will need to take it easy for six weeks as I recover. Ugh, another surgery – but at least this one is making me whole again. The surgery is very tricky since I am so petite and my skin has been severely compromised due to the six weeks of radiation I endured. Dr. Nahabadian will have to reconnect each of the blood vessels in order to ensure that the tissue and skin has healthy blood flow. Unfortunately, five percent of these procedures are failures and I have to understand that the new skin and tissue may not take to the damaged area.

Prior to surgery I have to have another PETscan to make sure that I am cancer-free. It is hard to believe that it has already been three months since my last one. If the scan comes back clean, then I will have my mediport removed during my May 7 surgery, which makes me ecstatic. I hate my stupid port. I also need to talk with the Infectious Disease doctors, who saw me both times in the hospital when I had infections, in order to determine which antibiotic I need to go on prior to my surgery – that way we hopefully can avoid an infection.

The purpose of this surgery is to successfully transplant my skin and tissue. I am trying to prepare myself mentally that the new tissue and skin may not initially resemble a breast. In three months I may need a “touch up” surgery in order to tweak Dr. Nahabadian’s work and make sure that I am as symmetrical as possible.

Who would have thought that my butt would make a great breast? So now what are we going to do to reconstruct my butt? Ah, the plot thickens.

To be continued ...

3/9/2009: The Specialist

“I want you to meet with Dr. Nahabedian at Georgetown University Hospital,” said my plastic surgeon, Dr. Wendy Gottlieb. I went to visit Wendy last Friday to have my stitches removed and didn’t realize that I would come out of her office with another big decision looming.

Once my stitches came out and I was bandaged back up, we chit-chatted some about my hospital stay. Wendy said that all the nurses still ask her how I am doing and were so incredibly touched by my story. She said, “You sure do make an impact on everyone you meet.” She then asked me about “this boyfriend” that all the nurses were talking about who would come to my room and curl up on my bed with me every day. “Well, I think you deserve something happy and positive after all that you have been through. Let’s get you reconstructed before the summer … or the wedding gown for that matter,” she said. I shot her a dagger-look that quickly turned to a smile.

My reconstruction is more complicated than other women, because I am very petite. There are a couple of different options: (1) latissimus dorsi myocutaneous back flap procedure which involves taking skin and tissue from my back, cutting the muscle and wrapping it through my armpit to my left breast, (2) TRAM (transverse rectus abdominis musculocutaneous) flap procedure which takes the muscle as well as the skin and fat from the abdomen to sculpt a new breast. However, this can cause complications like abdominal weakness and future back pain because the patient is left with no abdominal muscles, or (3) a procedure that Dr. Nahabedian performs called the DIEP (deep inferior epigastric perferator) flap procedure. The surgeon separates the artery and vein from the muscle in the stomach and then attaches the tissue to the breast site with sutures that are thinner than a hair. Less than one percent of women have this kind of reconstruction, but it ensures that the fresh skin/tissue has a good supply of blood, which has been an issue in my previous reconstruction.

I asked Wendy which surgery she would suggest for me. “I’ve been thinking about this a lot over the last three weeks and going back and forth with the pros and cons for each. I honestly don’t know,” she responded. “I just hate to think about you having a huge scar across your back when you can hide the one on your stomach under most swimsuits.”

So, I am either going to have a large scar across my back or my stomach in order to create a new breast. The idea of having another surgery makes me ill, but to then think about another part of my body being sliced and diced makes me want to just quit all together. I want to be whole again, but this process is exhausting mentally, emotionally and physically.

I meet with Dr. Nahabedian on March 20 to determine if I am a candidate for the DIEP surgery. I have until late April or early May to weigh my options and decide what I want to do with my body. I feel like Humpty Dumpty and that it is taking all of NOVAs plastic surgeons and doctors to put me back together again.

3/2/2009: Prosthetic Shopping

Looking around the lingerie section at Nordstrom’s it didn’t take long to realize that they didn’t have any prosthesis on display. I was approached by a woman in her late thirties with long black hair that ran down her back. She had rosy cheeks and a sweet smile. She asked how she could help me. I looked around and once I realized that no one was in ear shot I responded.

"I had a mastectomy and need a prosthetic," I said in a quiet voice.

Not missing a beat she asked, “Did you have a single or double mastectomy?”

“Well, my story is complicated. I had a double, but I have one implant, so I really just need one. Do I have to buy them as a set.”

“No, not at all. You can purchase just one.“

She escorted me into the dressing room to the largest room in the back. Before going into the room she turned to me and said, “Oh, and my name is Angel.” I smiled and introduced myself. I thought to myself, what are the chances!? She ushered me into a room wallpapered in toile with luxorious seats. It was beautiful. My heart was beating fast and I wasn’t sure what to expect next.

She asked which type of prosthesis I was interested in while she listed off a few options. I shrugged and told her I had no idea since I had never done this before. She gave me a genuine smile and said, “I will bring back a few options for you to try.” Before leaving she asked if I prefered trying on the prosthetic privately, or if I wanted her help.

“At this point everyone has seen my deformed body. If you can stomach it, you are welcome to stay.”

“I understand and please know that I have been doing this for many years and have fitted many woman who have had mastectomies. I will take good care of you.”

She left and I took my clothes off. I ran my fingers along my incision and grew more anxious and nauseous. Looking at myself in the mirror was disgusting. In addition, I had huge bruises on the sides of my waist from the shots I was given while in the hospital.

Angel returned with a box and a bra. I stood infront of her with my single breast exposed and tons of scars and bruises. She never diverted her eyes from mine. She was amazing.

"I am going to guess that you are wearing a 34B … you should be in a 32C.”

“Really!?”

“Try this on and you’ll see.”

The bra she had brought me was a full-coverage 32C and it wasn’t an ugly bra either. It had beautiful lace straps and lace across the back. I put it on and it fit like a glove. She handed me the prosthetic and showed me how to position it inside the cup of the bra. Like putting in contacts for the first time, it took a little practice. She left to find a fitted t-shirt so that I could see how it looked underneath clothing. Once I had the shirt on I began looking at myself sideways in the mirror and admiring my perfect, curvy body.

“I don’t mean to offend you, but you look so young to have battled cancer.”

“That’s beacause I am. I found my tumor when I was 25.”

Angel shook her head and said, “It makes me so angry.”

I bought two bras and my left breast prosthetic that evening from a woman named Angel who treated me with the utmost compassion and understanding.

Angel walked me down the hallway to the escalator. Once we got there the tears swelled in my eyes and my heart felt so renewed. Angel put out her hand and I wrapped my arms around her in a full embrace. “Thank you for making me whole again. You will never know what your kindness has meant to me.” I pulled away and a single tear ran down Angel’s face. I will never forget her.

2/9/2009: The Nightmares

Submerged in cool water the sheer white gown clung to my skin. My long black ringlets danced in front of my face. My ears filled with water and buzzed calmly giving silence to everything around me. I looked to the surface of the water where I saw angels and demons circling vigorously above. I released all of the air from my mouth watching the tiny bubbles dance quickly toward the light. I closed my eyes and was peaceful.

Opening my eyes I was engulfed in the darkness of my room. I waited a couple of seconds, and then gasped for air. My dreams were becoming more vivid and I knew this meant that things were about to change significantly. I noticed a severe pain in my left breast. Sitting on my bathroom floor I held my knees to my chest and rocked myself back and forth. I was dizzy and nauseous from anxiety. I knew something was wrong. How could I get sick the day before my biopsy?

Within a couple of hours I was admitted to Reston Hospital and was started on a series of antibiotics through my IV. That evening my plastic surgeon, Dr. Gottlieb came to see me. She reviewed a couple of options for surgery. It only took a couple of minutes and I told Wendy to remove my implant and not replace it. My mother looked at me wide-eyed and reiterated what the surgery meant. I nodded with a knot in my throat and said, "I know -- I will lose my breast." I asked Dr. Gottlieb to also remove the scar tissue and lymph node on my right side while she had me under anesthesia. I figured it made sense to just get it all over with at once.

The infectious disease doctors noticed a murmur in my heart beat and so following surgery I had an echogram done. I cannot even stomach explaining this test even now. It was truly excruciating since they had to rub and push against the crater that was now my left breast. The doctors were worried that the infection had moved to my heart. Luckily they reported back that my heart was "so incredibly strong." My parents burst into tears hearing the news.

My body was not so lucky though when it came to the infection. The tests found that I had a bacteria much like an intestinal infection (urinary track infection) in my breast. I asked my oncologist if this meant that I touched my vagina then my boob. He laughed and said no, but that it was good to see I hadn't lost my sense of humor. I then proceeded to tell everyone who entered my room that my vagina had made me sick. Stupid vagina! Additionally, the tests found that I had a contaminant infection in my mediport. I am now on a series of strong antibiotics for the next couple of weeks to bring my body back to life.

Dr. Gottlieb removed two areas of scar tissue from my right armpit area. I have a teeny incision about an inch long that itches like crazy! My doctors believe that the smaller piece of scar tissue is what was reported as a "questionable lymph node" on my PETscan. Both pieces of scar tissue were dissected and tested. NO CANCER WAS FOUND. I am elated. I will be tested again in a couple of months once my body has bounced back from this surgery and the inflammation has gone down. I will have check-ups every three months to ensure that I remain cancer free.

I was in the hospital four days and despite the cancer-free news, endless love and support of friends and family and the compassion of my nurses and doctors there was a looming sadness for the loss of my left breast. My last day in the hospital, Dr. Gottlieb arrived to my room to check my incisions and remove my drainage tube. She was bandaging me back up and the tears started rolling down my face. She sat on the edge of my bed. I said, "I know I am cancer-free and that I should be so happy, but I am consumed with the loss of my breast." Dr. Gottlieb said, "Jennifer, I am reconstructing one of my patients breasts this month and she is 50 – vanity is real no matter the age. It doesn't matter if you are 27 or 50 – you are a woman and you have lost something that defines you physically in that way. Don't be ashamed for feeling the way you do … you are entitled. And believe me that every woman working on this floor who has been changing your bandages, administering your medicine, or checking your vitals aches seeing what you are going through." It will be two to three months before I will have surgery to reconstruct my left breast. This will entail taking skin, tissue and muscle from my back or stomach to create a new flap for my breast and putting in a new implant. The good news is that the new skin will respond much better than the radiated skin, it will be done by swimsuit season … and I will be able to upgrade.

Leaving the hospital my nurses cried and hugged me. Many of them remember me from my other stays. Like Dr. Gottlieb had described, I saw the pain in their eyes -- they ached for me. Perhaps they were happy it wasn't them or imagined themselves or their daughters in my place. Regardless, I just hope I made an impact. Once I arrived home I unpacked my things.

Dr. Gottlieb had left two pink Victoria Secret bags in my hospital room. One bag contained prosthetic inserts for my bra. They other bag … two sets of beautiful lingerie and Godiva chocolates. As a woman, Dr. Gottlieb also understood the pain and the loss I was experiencing. She is a class act. I was moved to tears by her kindness and compassion.

Despite my pain, I am not ready to stay submerged in the cool waters of my subconscious. As long as my heart is strong, my spirit is vibrant and my vagina is kept clean, I will continue to fight. Keep circling angels and demons above the thin surface that currently separates us ... for my work here is not done.

2/2/2009: New Lump

I unbuttoned my blouse, took his hand and slipped it under my bra. I guided his fingers to the lump and said, "What the f&%k is that?" His eyes got bigger as he started pressing on the lump and pinching it between his fingers. "It feels like it is sitting on your rib. I'm going to need you to undress and put on a robe so I can examine you," said my oncologist, Dr. Heyer. He left the room and I crumbled into the chair. My jaw clenched with the onset of an anxiety attack and I could feel my heart surging out of control.

I was in the oncology office for my second to last Herceptin treatment and had not intended to talk to Dr. Heyer about my new found lump until I saw him in the hallway speaking to his assistant. I passed by making idle chit chat with the nurses and doctors. They all marveled at my thick black locks and gave me lots of loving hugs. They had all experienced my journey and were elated to see me healthy. Dr. Heyer must have noticed that I was acting different. He said, "Do you need to talk to me?" as he walked toward the conference room. I said, "Yes, but I need you to feel me up." He said, "Oh – then we'll need an exam room." (Is everyone just so used to my inappropriate comments that they just ignore them now?)

Dr. Heyer pulled my gown open and moved my implant away from the lump to ensure that it wasn't just the edge of the implant. He said, "This doesn't feel like a tumor, Jennifer. This feels like scar tissue or part of the implant. I can move it around. Talk to Wendy [my plastic surgeon] on Monday and have her look at it." He left the room and the tears ran down my face. Thank God I don't have cancer again.

Today I went to see Dr. Gottlieb (my plastic surgeon) to have my stitches removed from my left breast. I took her hand as I had Dr. Heyer's and laid it on the lump next to my right breast. She looked at me concerned. "I think we should biopsy this. With you, we'd rather be safe then sorry." I was shocked. I told her about my recent PETscan and her office called over to get the results. At the same time Dr. Gottlieb called my surgeon, Dr. Mason to get a second opinion on the biopsy.

"I have your PETscan results and I want to go over them with you. I am not good at reading these things, so I need for you not to freak out when I tell you what it says." I was numb and staring blankly at Dr. Gottlieb. Her lips were moving but all I could hear was the high-pitched horn of a truck running me over. "… newly enlarged right axillary lymph node measuring 13mm with abnormal FDG uptake with SUV of 2.6 is suspicious …" WTF was happening? I have cancer again … but on the other side??? But I did everything right, even giving up my right breast to prevent this. How did this test know that I drove an SUV? How could this happen twice to the same person???

I heard nothing else she told me besides the fact that I have to have a biopsy on Thursday morning in Arlington to test both the mystery lump (which everyone thinks is scar tissue) and now my "newly enlarged right axillary lymph node measuring 13mm." Walking alone to my car at Reston Hospital I called my mother. "I have bad news and I have bad news. The lump needs to be biopsied and I think I have cancer again." Silence. How many times must my family bend before we eventually break?

Dr. Heyer called me to review the report. I was in a meeting with my team at work and scrambled, stumbling over a chair to exit the room quickly. My voice shook on the phone with him while my throat tightened to keep me from bursting into tears. "Did you see the report? What is going on? I did everything right. How could I have cancer again? What do I do?" He waited patiently for me to get out everything that had built up for the last two hours.
He explained that he hadn't received the actual images yet (just the written report) so he doesn't exactly know what we are dealing with. He said that this lymph node had an SUV of 2.6 and my previous tumors had an SUV of 17 and 18, so this one is not 100 percent identifiable as cancer. He said it is very possible that the lymph node is simply inflamed from the surgeries I have had and that he isn't convinced that it is cancer. I told him how confused I was due to the fact that I never had cancer on my right side. He said that cancer is always a possibility for me but that he finds it highly unlikely. Even so, it needs to be tested so that we know for certain.

Thursday I will have my biopsy …

1/27/2009: Done

I'm done.

It's hard to believe that a year ago at the age of 26 I was diagnosed with breast cancer. I have had six surgeries, 18 weeks of chemotherapy, six weeks of radiation, four heart scans, two PETscans, intense anxiety attacks, vivid nightmares, more blood work than any one person should ever have to get done (how is there even any left?), six implants (and to think – most people are content with two), too many sleepless nights to count, pillowcases soaked with tears, moments of surreal clarity, people moving in and out of my life faster than my hair growing back in and tremendous growth work. This is a journey that shook me to the core, opened my eyes to true love and beauty and changed me forever.

This week is an important one for me. Not only does it mark my one year cancerverary, but I will have my second to last cancer treatment and a PETscan to ensure that I am still "clean" and there is no reoccurrence. (Don't think for a moment that my stomach doesn't turn when I think about the PETscan results.) If my PETscan goes well, then my next surgery will be the first week of March to have my mediport removed since my treatments will be over. I told my oncologist last week that I wanted it out as soon as possible. He responded with a huge smile and said, "You are like no other cancer patient I have ever dealt with. Usually patients want to keep it in until they have a couple of tests and get a little … further out." He said, "I am just in awe of your drive and passion for life." I smiled and said, "If cancer were my boyfriend we would have broken up a long time ago. I'm done."

The phrase "I'm done" has been used a lot in my life lately. I'm done living in the gray -- everything is now falling very clearly into blacks and whites. I described to my friends that I did a little clean sweep of my life and relationships. I took a step back and logically (yes, Steve, I can be logical) and systematically categorized things that were positives and negatives in my life. Those things that I deemed positive I will invest more time in. Those things that were negative that I cannot change, I developed a new way to approach them and those that I could change, I cut. I'm done.

I have made a decision about my reconstruction – I am taking a much needed break. Since my stint in the hospital over the holidays, I had another surgery a couple of weeks ago where my plastic surgeon swapped my implant (again!) and redid my incision since it wasn't closing properly. This means that I was also put on two more weeks of strong antibiotics since I still have an open wound which can get infected easily because of my immune system. Blah! The skin on my left side is having such a difficult time healing where it was radiated. I get my stitches out February 2 and I am praying that this time my skin will cooperate and stay closed. This year I am going to focus on getting my body healthy and giving it some time to heal. In a year, I will then finish my reconstruction and make any necessary "tweaks" to the girls at that time. I have been through so much and am exhausted on all levels. I'm done.

My healing is just beginning. I pulled my wigs out the other day and was prepared to donate them when I broke into tears clutching them to my chest – I am not ready to part with them just yet. They serve as something more than just wigs. I know it sounds ridiculous, but there are a couple of things of that nature that I still need to work through, like eating asparagus again (the smell still makes me violently ill like it did during chemotherapy). I know time heals all wounds, but this little 98 pound body is torn and tattered for fighting for an entire year. I'm done.

1/3/2009: I'm a Survivor

I was going to write a blog entry about how my holidays sucked because I spent five days in the hospital and then a couple more at my parents house recouping from a horrible infection and yet another surgery -- until last night.

Referring to myself as a survivor and believing that I am a survivor are two totally different things. For the last several weeks (and possibly months) I have been caught up in my very own pity party instead of staying focused and continuing to fight. My priorities shifted and I wanted to pretend like none of this ever happened.

Last night I played a game called "Would You Rather … ?" (Seriously fun game!) and when my friends all responded differently then I did to a question, I immediately knew why. I was asked if I would rather die in an airplane crash or survive and eat the dead passengers. I immediately answered that I would eat the dead passengers despite my other friends agreeing that they would all rather die. My argument was that I have fought too hard and would do whatever it took to survive. (A bit of a stretch? Eh. Would I really eat a dead person? I don't know … maybe. After all, my mom insists that I look like a vampire now that my blood count is low, my skin is pale and my hair is coal black. This is just another reason why Edward Cullen and I should get married. Sorry, I digressed. Am I a little mentally unstable? Perhaps. But I found my own response quite interesting.) These last couple of days have tried me to my core and the sassy spirit I once had has returned. Cancer picked the wrong bitch.

Let me explain what happened over Christmas. I awoke Christmas morning at my parents' house in horrible pain. I figured perhaps I overdid it at Pilates or yoga that week, or that the gifts were too heavy that I carried down three flights of stairs at my condo complex. I popped two Vicodin and went into the bathroom to survey the damage. My left breast was swollen to my collarbone and was the size of a soccer ball. My skin was severely black and blue. After opening presents and eating breakfast I returned to bed and slept in to the afternoon. I couldn't even wear the outfit I brought because of the swelling. After dinner I asked my Mom to take my temperature, which registered twice at 102. I called Dr. Wendy Gottlieb (my plastic surgeon) who was on holiday in Pennsylvania. She asked a number of questions and then told me to go immediately to the ER. It only made sense that my family end our year the same way we began it … at Reston Hospital with our hearts in our throats.

The doctor in the ER examined me and quickly pointed to my belly button ring indicating that he had found the problem. (We all had a much-needed giggle.) After showering me with compliments about how beautiful my eyes are and how gorgeous he thinks I am he began running all the necessary tests – blood, urine, ultrasound, x-ray, swab of my nose and breast incision … everything but the colonoscopy. (Darn -- perhaps next time.) My blood work came back with my white cells elevated, and low iron (hence the pale skin) and potassium. The ER doctor called Dr. Gottlieb and they decided to start hitting me with the strongest antibiotics they had in hopes that the left breast would react positively. I was admitted into the hospital and told that I may lose my breast for the second time. I was seething inside, but too sick to even complain.

I spent several days bleeding out of my incision and getting pumped with antibiotics through my IV. I barely had enough energy to lift my head. Dr. Felice who is the head of the oncology practice at Reston visited me daily with magic tricks to lift my spirits. I quickly fell for him. My room was constantly occupied by friends and family … and always my Rock (Mom) who never left my side. It was that Saturday that Dr. Gottlieb called me and told me she was returning from vacation to "sort me out." Upon her arrival, she quickly examined me and determined that she needed to "go in, clean things out, and swap the implant." That night I went to bed and with plenty of Vicodin in my system had a conversation with my body, which unbeknownst to me, my mother overheard. I promised my body that I would fight hard and take good care of it if it could just kick into gear and help me out. I can only do so much from the mind, heart and soul – sometimes you need the body to play a part.

Sunday I was in surgery. A bleeder was found with a large hematoma. It was removed, cleaned up and a brand new implant was put in place. It wasn't until 48 hours later, and watching plenty of 'SpongeBob Squarepants' and 'House,' that we found out that the hematoma had group b strep inside of it. Luckily the infection had not moved to my blood stream or anywhere else in my body or breast. My parents left the room after receiving the news and cried in the hallway with my nurses. (I don't think they thought I knew.) I was finally released on 12/30 with pain pills, iron pills, a strong antibiotic – the list goes on. I spent several days at my parents house recouping. The last night I was there I awoke to our little Yorkshire terrier sleeping on my belly with her head resting in my cleavage. (It pleases me that someone is enjoying the fruits of Dr. Gottlieb's labor.)

Now, I am not out of the woods just yet. I have two weeks of strong antibiotics, four weeks of no physical activity and my blood will be tested again at the end of the month. My blood count being bad leaves me open to more infection and even the return of the big C. It is imperative that I get my body strong and back on track. I am on lots of pills (gag!) and eating tons of greens and red meat. I saw Dr. Gottlieb this past Friday and she said that my recovery is simply incredible from a cosmetic standpoint. She reminded me how bad my blood work was and that I need to fight hard now to get strong so that I don't have to lose my breast for a third time.

In my most vulnerable hour I asked my friend JB for the humor in all of this and his response just about sums it all up … "Well, here's the humor. You get laid off and then hired but then you get dumped but then you find independence but then you get cancer and lose a boob but then you get new boobs but then you get sick but soon you'll get better." Life goes on and I can only fight for a healthier and stronger new year. Just know that if we're in a plane crash and you die … I will eat you. I'm a survivor!