Tuesday, May 27, 2008
I find it so incredibly easy to envelope myself in the moment and forget that I am fighting for my life every second of the day. It is so easy for me to shut off my mind and allow myself blissful ignorance, but do I truly gain anything to strengthen who I am by doing that? It was this weekend that embraced friends, soaked up the sun and allowed myself a break … I experienced several windows of ignorant bliss and it was magnificent.
On Friday I went out with my girlfriends to my favorite Japanese steakhouse. I laughed until my belly ached and ate until my heart was content. I made jokes about my cancer and separated myself from the fear, pain and hollowness of the actual disease and talked about it as though it were an ex boyfriend. It was an interesting experiment. It wasn't until later that evening sitting at the bar that my body began shaking and I knew too well what that meant. I had pushed it to its limits and it was time to go home and rest. I embraced my friends and kissed them all on the cheek goodnight. The first night of ignorance was successful and I slept through the entire night peacefully.
Saturday I faced a new challenge … a wedding. I was surrounded by a few close friends, but many people who did not know about my cancer. For one evening … I was just another 20-something woman. It felt nice to just be part of the crowd. I drank, laughed and danced like a robot. It was a beautiful wedding. Once the servers began bringing out the food I felt sheer panic deep in my chest. Oh God … I smell asparagus. My friends quickly ate their food as I felt myself retreat inward. Was I going to throw up? Were the guests looking at me? Could they tell I have cancer? My head was spinning. Within only a couple of minutes I talked myself through the fear that had set in and was back on the dance floor. When it was time for the beautiful bride Christy to throw the bouquet I stayed seated. My friends forced me to go out on the dance floor. I stood off to the side in hopes that I would simply just be one of the crowd and go unnoticed. The bouquet was tossed and veered in my direction. Before I could move out of the way it hit me in the crotch. (Yes, in the crotch!) The girl next to me said "It hit you, so it's yours." I picked it up and thought to myself I wonder if I will live long enough to be married. Am I going to die? I quickly shook that thought. Instead I returned to my friends who joked that perhaps it takes six bouquets to find your prince charming. (Yes, I have caught six bouquets now. I feel like Katherine Hegel in '27 Dresses.') Always a bridesmaid …
This weekend taught me a lot about finding the balance between escaping and engulfing cancer. I need to allow myself both in order to get through this journey mentally and emotionally. The negative thoughts do creep up every once in awhile and I think they come with the territory. I am ok with that since they are in my control. I have come through 18 weeks of chemotherapy and I can face nine more months of surgeries and radiation. No asparagus, bouquets to the crotch or shaky legs will define me. I shall be triumphant, embrace normalcy soon enough and I will find my happily ever after. This I am certain of.
Tuesday, May 20, 2008
Let me explain. I met with Dr. Wendy Gottlieb (my plastic surgeon) yesterday and I LOVE her. She was incredibly compassionate and optimistic … exactly what I need. She told me that things may change during the process, but whatever happens we will roll with it and she will be able to fix it or make it work. I saw her work and she is truly an artist. I have complete faith and know that I will end up with an amazing end result. What I did not anticipate was that I will have three surgeries over the course of almost a year before I am put back together again. I feel like Humpty Dumpty.
WARNING: If you are sensitive to surgical information, do not read the information below!
Here is my timeline:
(1) Surgery #1: Either June 18 or July 2. Dr. Kenneth Mason (surgeon) will go in through the nipple (the only incision, other than the drains) and remove all the tissue in the breast back to the pectoral muscle. Then Dr. Wendy Gottlieb (plastic surgeon) will then cut the muscle and place the filled expander behind it against the ribs. (The expander looks like an implant, but has a port on it.) She then places the muscle over the expander. On top of that she will line the inside of my skin with donated skin/tissue in order to give the breast a smooth look, instead of the skin looking thin and cottage cheese like. Then they tie me up where my nipple used to be and I head into recovery. I should wake up about the same breast size as I am now. She said she would fill the expander as much as the skin would allow for.
(2) Recovery: I only stay in the hospital 1 to 2 nights. The drains are removed week 1 to 3 depending on my body. I will probably end up with 4 to 5 drains depending on how many lymph nodes they remove.
(3) Once the drains come out (week 2 to 3) they do the first expander fill. Filling the expander consists of a visit to my plastic surgeon's office where they take a long horse-sized needle and stick it through the center of my breast. (At this point I don't feel it since I no longer have nerves in my breast.) It is able to seek out the metal port in the expander and connect. They fill me until I have been "stretched to capacity."
(4) Week 4 to 5 they do the second expander fill (which my plastic surgeon says is usually all it takes to reach the desired size)
(5) Radiation: I cannot start until I have finished my expander fills. Typically radiation lasts 8 weeks, although I won't know how long mine is until they dissect the tissue from my mastectomy and determine how much cancer is left … if any at all.
(6) I then have to wait two months for my body to heal from radiation and the tissue to start rebuilding itself
(7) Surgery #2: Then I get my implants
(8) I wait 2 to 3 months for my breasts to settle into place.
(9) Surgery #3: I have flesh-colored nipples constructed from donated tissue
(10) I have my nipples tattooed to a pink color and am finally finished!
The task before me seems daunting and I am not sure where I will find the strength to continue on this journey. I feel overwhelmed and uneasy about my surgeries. I am not a patient woman and embracing this timeline is difficult for me. I am at a point where I am tired from chemo (on many levels) and am having a hard time mentally and emotionally preparing for an operation that will take almost a year to complete. I understand the mission of this journey is to get healthy, but the 26-year-old woman in me is mourning the loss of her youthful physique.
I opened the gown as I stood topless in front of Dr. Gottlieb. She told me that I was in an excellent starting place with very symmetrical breasts. I stopped her and told her to look at my nipples. I said, "See how little they are? I want them exactly the same." I think she could sense the concern in my voice and see my eyes starting to swell. She stopped measuring my breasts and smiled at me. She said, "We'll make it happen then." Let God be my compass … my journey is so very far from over.
Sunday, May 18, 2008
Friday I was even sicker than Thursday and missed another day of work. I headed back to the hospital to meet with Dr. Heyer (my oncologist) in the morning. He examined me and said one of three things is wrong: I either have a nasty stomach virus (which is most likely), my body is now saying "enough" with chemotherapy and is reacting back, or I have developed CDF from my treatment. He said he wanted to start me on antibiotics for CDF in case it is that, but they won't know for certain until my stool sample comes back Monday or Tuesday. (Yes, I had the luxury of pooping in a cup. Oh joy!)
I asked Dr. Heyer to review with me my midway MRI and heart scan. The MRI showed that the lymph nodes, diseased tissue and even the 3cm hematoma (blood clot and fluid pouch) from surgery had ALL shrunk. He told me that the MRI showed an area of increased brightness (Does that mean the hot spot got hotter!?) and he said that too will not be fully understood until they can dissect the tissue after surgery. My heart scan came back excellent, which pleased my doctor greatly. He said my heart was previously pumping at 62% and now it is at 64%, so there has been very little damage or change.
Dr. Heyer did an exam of the lump under my arm and told me that he is 99% positive that is the hematoma from surgery, but that they won't know 100% what is going on in my body until they do surgery since MRIs and PETscans are too sensitive on breast tissue. That was frustrating for me to hear, but I understand the limitations of imaging. I concluded my appointment with Dr. Heyer by asking permission to go on a weekend get away with my friends at the end of June, prior to surgery. He told me he understood my need to "escape" and supported it 100%. Now I have something to plan and look forward to! YAY … sun and surf here I come!
After my appointment with Dr. Heyer I was put in the treatment room for my weekly Herceptin treatment and a bag of fluid due to my dehydration. My godfather, Bill showed up to surprise me. It was such a wonderful visit and gave me a second wind of energy. I am so very blessed to have such amazing people in my life. I feel incredibly loved and supported. It is a wonderful feeling. Please know how much I appreciate all of you.
I woke up Saturday morning feeling significantly better. I am not sure if it is the antibiotic that is working on my body, or that the virus I have is leaving my body. Either way, I am just SO happy to be feeling more like myself and able to attend some of my friends events. My friend Jessie hosted a Pampered Chef party on Saturday in my honor. A portion of the sales went to benefit the Avon Foundation. The event was so much fun and I am so happy I could attend. And last night I concluded the day celebrating Marisa's birthday. It appears that being surrounding by loved ones is just what the doctor ordered.
Friday, May 16, 2008
Yesterday I woke up gagging in my sleep, nauseous and dizzy. I spent my morning in a cold sweat lying on my bathroom floor. I could hear the blood rushing in my ears as the sweat beaded on my nose and cheeks. Despite being perplexed by my body's reaction, I managed to pull myself together and make it into work. It didn't take long and the smells and sounds started making me incredibly sick and I could barely read the words on my computer screen. After lunch (which I didn't eat) I drove myself to my oncologist's office at Reston Hospital. I didn't have an appointment, but due to the way I was acting (shaking, sweating, dizzy) they took me back immediately. It didn't take long and I started crying out of fear and frustration.
My blood pressure was very high (which is odd for me), but my temperature, blood work and exam were all excellent. My blood work actually showed the anemia improved, although Melanie (my nurse) thinks that could be due to the fact that I was so dry (dehydrated). I told Melanie about all of my aliments. She said the fatigue/weak body is due to the fact that chemotherapy is cumulative and that my body is growing weaker and weaker each round. The nausea she gave me new medication for which I am hoping will help significantly. The cold sweats I keep getting are due to chemotherapy throwing me into a pre-menopausal state. (Now I understand what Mom went through.) As for the stomach pain/discomfort, the doctors still are not sure. They did a urine test thinking I may have a UTI and that should come back today. Apparently, Taxotere causes the organs to swell, especially the bladder. Melanie hugged me and told me she knew how hard I was fighting and how tough all of this is. It didn't take long and the tears were falling down my face again. She told me to hang in there and that it was almost over … just 14 more days until my last treatment.
I was then taken back to one of the treatment rooms and given a bag of fluid for my dehydration and nausea medication through the IV. Unfortunately, I had not used my numbing cream on my port, so when the nurse accessed it … let's just say it was very tough. I told her how tired I was of getting pricked all the time … and started crying again. She handed me a tissue and gently touched my arm telling me that I was so strong and brave and was almost at that finish line. Why was I so emotional today? Ugggh! I called my Mom crying on the phone and within minutes she was by my side. I felt so much better having her there with me. We ate crackers, chatted and watched HGTV (my guilty pleasure). Sheesh … what a day!
Today my stomach is even worse. I will spare you the details, but I have spent almost my entire morning from 4 AM on in the bathroom. I am incredibly dehydrated. I have an appointment with Dr. Heyer (my oncologist) at 11 AM, then my Herceptin treatment, so hopefully they will be able to examine me again and figure out why my body is so sick. I will be sure to update you all once I know more.
I will leave you with some good news … my heart scan was "excellent" according to my nurse Melanie. She said they saw "some decrease" but not even enough to really mention. The doctors and nurses continue to comment on how well I am doing and how strong my body is. My heart is strong and handling these horrible drugs like a champion. I have only 14 more days of this terrible treatment, my friends. We are almost there.
Tuesday, May 13, 2008
The rainy weather has finally subsided and my soul feels renewed. So many wonderful and positive things are happening in the lives of those I care about that I cannot help but be completely ecstatic. I had a conversation with my Mom last night about all the wonderful things happening with my friends and how it gave me strength to see them so happy. I have friends who are finding success in job searches, are growing more pregnant by the minute, planning their weddings, finishing school and more. It finally feels as though the tides are turning and 2008 is not such a loss in the long run. And just think, only 17 days remain until my chemotherapy treatments are over and my life can resume as normal. How can you not be psyched when you are that close to reaching such a HUGE milestone?
Round five of chemotherapy was a trying one. I feel my body grow weaker and weaker each round. This time, in between treatments, I was unable to even enjoy my basic yoga DVDs from the comfort of my home. Stupid cancer. My symptoms are actually not as severe as last round, however I am not making light of how horrible they still remain. I slept a lot after treatment this round and my parents simply woke me up to eat or take my medications. I am back at work today, but with a body that won't budge, a mind that won't focus and feet that are too swollen for anything other than my beloved J.Crew flip-flops. The noises and smells in my office are bearable with an occasional Xanax or nausea medication. Every sense is heightened and my frustration with my physical state has led me to choke up several times throughout the afternoon already. But … I can do this. I am the strongest person I know and if I have done this five times already, what's one more, right? Bring it! It just gets me one more step closer to having surgery where they can cut out any remaining disease and sickness.
Tomorrow is a big day for me. I have my three-month heart scan in order to gauge how much damage the Herceptin and chemotherapy drugs have done to my heart. I was told none of the damage would be permanent, but that the doctors would need to continue monitoring my heart in order to make sure they are protecting it during the process. It is kind of scary when you stop long enough to really think about it. I have my heart scan first thing tomorrow morning, so be sending me your positive thoughts please for a healthy heart. I would not want to get to this point then have to delay treatment or surgery from happening. Next Monday, May 19 is my first pre-surgery appointment with my plastic surgeon, Dr. Wendy Gottlieb. I have already started looking at pictures of celebrities and getting opinions from friends and family about my "new" body. I cannot wait to see what Dr. Gottlieb will suggest for me.
Sunday, May 11, 2008
Yesterday was Team Jen at its finest. Andrew, Bronwyn, Jenn, Rick and Daddy all sacrificed their Friday morning to sit with me during my treatment. Unless you have been through something like this, or a surgery of some kind, I don't think you can truly understand how much having the support of your friends and family means. It can be embarrassing and very vulnerable to have people see you in such an awful state, but I don't think they cared in the slightest. I found a pink wig in the donation box at my oncologist's office that seemed to entertain the group. Haha! My friends were so understanding and supportive of me during my treatment, even giving me a foot rub to take my mind off of the poison being pumped into my body. It is the visits, e-mails, text messages and even the smallest gestures of support that mean so very much to me. I don't think I could ever truly express my gratitude.
I got through the pre-medications, Herceptin and Taxotere during treatment, but then started to have a reaction. I got really flush in my face and neck, started sweating and had some trouble breathing. They flushed my IV immediately with saline (which helped considerably), then prior to my last medication, Carboplatin, they put me on a saline drip for fifteen minutes to try and dilute the Taxotere that was already in my system. That is the roughest of all the medications and rarely have I been able to squeeze by without it giving me some kind of issue. Once I got to the end of my treatment I grew very tired. I slept almost all day yesterday, last night and this morning. My poor little body is just pooped. I have a feeling in the coming days my body will remain pretty run down. The nurses told me that the fatigue will build and I could become more tired this round. At this point, I don't even care because I am almost done with this nightmare and can move on with my life again … well at least to the surgery stage. I just want this cancer out of my body for good.
My blood work was wonderful, my sinus infection gone and the lump under my arm did not concern my nurse. She told me she is almost positive that now that my incision has healed I can feel the blood clot/fluid left over from my surgery more prominently. She said as it heals it will go back and forth between being hard and soft and to please quite poking at it. She said that you do not grow tumors while on chemotherapy, but if I was still emphatic about having something done about it, they could schedule an ultra sound. I told her I would wait a week and make a decision. She said my MRI was great, but that she can understand my concern and they would do whatever I want to help ease my mind. I am just so paranoid these days about my body. I just want so desperately for it to all be okay.
Please know that I am fighting hard physically, mentally, emotionally and spiritually with you all surrounding me with your love, support, compassion and prayers. This is one fight I do not intend to lose. Thank you all so very much and I will keep you posted on my progress in the coming days as my body tries to repair itself.
Tuesday, May 6, 2008
This weekend I decided to shampoo my wigs. I have had them since early February and let's just say that they were getting a little funky. My brother, Joey purchased shampoo for my wigs as a gift. I know in my heart that he is trying so desperately to make this all better. He feels helpless, as do many others who love me, and does whatever he can to continually shower me with gifts. I appreciate his gestures of love and kindness more than he probably realizes. Once my wigs were washed ("funk free") and had dried I placed them on my head to style them again and brush out the tangles. Several strands broke free from the woven scalp and I immediately started having a panic attack. I know it sounds stupid, but there is no way to truly express what it feels like to lose your hair. It is a surreal experience that there is no way to prepare yourself for it. It is one of the most horrible things I have ever experienced and to see those strands falling out effected me in a way that I cannot describe. Psychologically, when I see hair fall out, I panic now. I wonder if this behavior will continue when my hair grows back and it sheds. How will I overcome this fear? These are implications I had not prepared myself for.
This weekend I was showering and as I do almost every shower now I was doing my daily breast exam (yes, it's totally psychological) and feeling my incision under my arm. I felt a lump. I became faint and nauseous, so I sat on the floor in my shower and let the water continue to fall over me. I was crying hysterically and breathing hard. I continued to tell myself over and over that I JUST had an MRI and it said everything shrunk. I know that I have some fluid still under my incision, so I am sure that is what I am feeling, but it doesn't stop me from being paranoid. This is MY body and I want so badly for it all to be okay. After I had talked myself through the situation, I stood and resumed my shower, but that feeling only subsided temporarily. When I was visiting my family this weekend I made sure to have my mom feel the lump, too. I will ask my oncologist about it on Friday, but I almost certainly know that he will tell me not to worry. How can I not? Am I going to be like this forever? Am I going to live in fear of cancer returning for the remainder of my life? These are not things a 26-year-old should have to battle with daily.
Right now I see these psychological challenges as such a burden. I am trying desperately to find a positive and optimistic angle, but am coming up empty. This Friday is round five of chemotherapy where Andrew, Bronwyn, my Dad, Jenn and Rick will all be joining me. I am so blessed to have such wonderful friends who don't mind seeing me in my darkest and ugliest of hours (useless, slurring, grumpy and unable to remember what I am talking about mid-sentence). I know I only have two more treatments left, but then that tiny, negative voice creeps up and says "I can't believe I have to go through this two more times." Treatments are getting harder and harder as the poison builds in my body. I am so tired and weak. I am counting the days until May 30. Please God just help me get through this month.
Saturday, May 3, 2008
My family members came out in droves to be there for me in my biggest time of need. Close family friends who were there the day I was born came to celebrate my journey. Sorority sisters truly practiced what our foundation is based on by showing faith, hope and charity. Girls who I used to cheer with at Chantilly High School and George Mason University showed how deeply our bond went by stepping up when I needed them the most. My new and old co-workers were there with endless laughs. High school friends who I have not seen in over eight years were there reminiscing over memories and offering endless hugs. Even my dear friends from Lees Corner Elementary School didn't hesitate to show their love. Other friends who are so dear to me, and even acquaintances were there offering their warm words of affection. And even people I did not know who have followed my journey through my website were moved enough by my story to show their support. I think I may be the luckiest girl in the world. With this much love and support there is no way that I can lose this battle. Thank you from the bottom of my heart.
One of the most amazing moments of the evening was that my dear friend, Kandi, who is also fighting breast cancer, traveled to come to my event with her husband and wonderful friends. You may have see her, or been lucky enough to have even spoken to her. She is breathtakingly beautiful and was wearing a lovely black dress and gorgeous pink wrap on her head. Despite her battle and the sickness she was feeling, she was there to show her support for me. It was the first time we had met face to face and I was choking back the tears. I cannot begin to express how much her friendship has meant to me.
I am amazed by my friends and all the hard work they put into planning this event. My good friend Andrew Waters came up with the idea for the fundraiser and solicited help from my brother Joseph Kwiatek, my sorority sisters Kere Knapp and Megan Sinks, my aunt and godmother Patty Campbell and my high school friend Ashley Wallace. Thank you to all my friends who volunteered their time to help with the event, promoted it, or who acquired donations for the silent auction. I am incredibly grateful.
My friend Chris Ciccone was at Pink Martini Night encouraging people to join Team Jen for the Susan G. Komen Race for the Cure on June 7, 2008 in D.C. If you did not have a chance to sign up or donate, you can visit our website and join today! I plan to be there participating despite the fact that it is only a week after my last chemotherapy treatment. YAY! They have a 5k run/walk and even a 1 mile walk, so it is something everyone can participate in. This is the Susan G. Komen Race for the Cure's 25th anniversary, so it is sure to be a memorable fundraiser to participate in.
There were approximately 350 people who came out to Pink Martini Night. I am hoping I was able to at least say hello to each of you and thank you for coming. If I did not, please know how much I appreciated it. My body was not cooperating since I had my Herceptin treatment yesterday afternoon and am now fighting a pretty brutal sinus infection, so there were a couple of times I needed to take a moment and sit. I wish I could have spent more time with each of you. It was such a wonderful evening having all of my friends in one place. If only we had more time.
We are still finalizing the donations, but it looks as though we were able to raise close to $9,000 with your generosity. There are no words to express how this will help elevate my financial burden. Now that the financial stress has been lessoned I can focus all of my attention on healing myself. Just think … 29 days left until I am finished chemotherapy. Please know that it is because of YOU that I have been able to fight so hard.
I love you all dearly. Thank you, thank you, thank you …