Refresh. That is precisely what I have done. I have clicked the refresh button on my psychological state and although it hasn't wiped clean the issues, it has put me in a better position to handle them. My mindset and spirit are in a much better place and the chaos that controlled my mind and caused such turmoil feels organized and manageable … just the way I like things.
I don't claim to have it all figured out, or to feel at peace with what has happened over the past seven months of my life, but I also refuse to let it control me. I said early on that I live by my father's words that when you wake up in the morning and your feet hit the floor you make a choice how you want your day to go. It takes just as much effort to be negative as it does to be positive … I choose to invest my time wisely.
This past week served as a turning point for me. While I experienced a heavy heart being contacted by four young women who are embarking on my same journey, I felt intense vitality and vibrancy through the happiness of my friends. One of my closest friends, Marisa, gave birth to her son, Brady Patrick Shea on Wednesday. As I received the minute-by-minute updates throughout her labor I trembled with anticipation, prayed for her and Brady's safety and my heart soared with the purest of loves. Once the news came that Brady had made his grand entrance, I felt elated and rejuvenated.
My friend Kandi, who is also fighting breast cancer, made it through her mastectomy on Friday with clean margins. She is cancer free and I am so incredibly thankful. She and I both conquered chemotherapy, surgery … and now cancer. She is such an amazingly strong woman and I am blessed to know her.
At a concert Saturday night I danced with my best friend's two-year-old daughter, Hadley. At the end of the evening she reached up for me to carry her. Walking to the car I spun her around singing the lyrics to Tommy Tutone '8675309 Jenny' that was being sung by the '80s cover band, The Reflex. She looked up and pointed to the sky saying 'plane.' I told her that they were stars and they were far away. She repeated the word, 'stars' over and over. In that moment, I was completely present and treasured every step I took down that gravel path with Hadley perched on my hip.
I find these days that I allow myself to get lost in the moment and am much more present when with my friends and family. Every minute counts. This weekend I organized a family outing to see 'The Lion King' at the Kennedy Center. Doctors appointments, surgeries, treatment sessions and medicated comas stole family time from us these past seven months. It was time to finally create a new memory of our family being together … one that was positive. As I looked down the row at the Opera House and watched their expressions I knew this would serve as the new memory of togetherness.
It's just my luck that as I start to get myself together psychologically, my body starts to fail me. I now have radiation poisoning on my chest. Basically, it is a severe form of sun poisoning/burn, but, according to my radiological oncologist, my skin is not red enough yet. My skin is pinkish red and I have broken out in a rash that is EXTREMELY itchy. (And wouldn't you know that scratching the rash makes it itch more.) Supposedly, this is all normal. I have completed 12 days of radiation and have 16 more to go. My radiological oncologist cut back my treatment from 30 to 28 days. I will continue treatment the way I have been until Sept. 12, then Sept. 15-17 they will increase treatment by 25 percent and focus it just on the center of my chest. I am counting down the days, keeping my mind healthy and taking lots of Benadryl. Ahh so itchy!!!
"How often do you have to cut your hair to keep it looking like that?" a woman asked me on the elevator. I was completely caught off guard by her question. I stared at her for a moment, and then said, "I haven't had to cut it yet, so I don't know. I had cancer so I was bald." She responded, "Well it is gorgeous and you are absolutely stunning." I miss my hair today.
I look at pictures of myself from last fall and over the holidays and I cannot believe how a couple of months can change you so much. I look completely different. I don't even recognize myself anymore. I have gotten many compliments on my new super-short 'do and plenty more stares. It's the staring that I can't stand. When I wore my wig I was camouflaged. I was able to be just one of the crowd without drawing attention to myself. Now I stand out and I wonder what people are thinking when they look at me. The weird thing is, I always loved standing out and getting attention, but this time I hate it. Maybe it's because it's not something I had control over. I wonder if people know that I had cancer. Do they assume that I am a lesbian? Do they think I am just trying to be trendy? Hmm … I wish I knew.
Perhaps if I had more strength and was rested none of this would even bother me. Radiation has quickly become very challenging. I am absolutely drained to the point of tears and find it hard to focus on anything of any importance. I meet with Dr. Moulds every Tuesday and he assures me that this is all very normal. He said he would leave my level of activity to my discretion, but that I may find that I need to cut back on some of my "social outings" due to fatigue. He wasn't kidding! Not only am I exhausted, but I am becoming irritable and cranky. Frankly, I'm a real joy. The fact that I cannot exercise to the extent that I'd like doesn't help either. It just feels like a vicious cycle. As soon as I finish one phase of this journey and start to feel better, I begin another and crash again. I am experiencing a loss of appetite, reliance on sleeping pills and an increase in caffeine intake, so my body is totally off. I need things to be normal and balanced again.
Luckily my skin has held up to radiation so far. The area that has been radiated is slightly pink, but I have no pain or discomfort. Apparently the visual effects don't surface until week three or four. I am hoping that with my vitamin C intake and using the suggested creams and ointments I will be able to avoid the burns and blisters.
If the exhaustion doesn't drive me off a cliff, perhaps my psychological state will. I was talking to my girlfriend Laurie over lunch the other day and was expressing some desires, such as traveling, losing weight, moving, and wiping clean my wardrobe, along with other things. She is so smart … she was able to see through my whirlwind comments and decipher that what I am trying to do is "start over." After a life-changing event people seek to wipe the slate clean, go where no one knows them and start anew. I have this unrelenting desire to start over and it consumes me. I feel as though I have been dropped into a void and that my recovery is still just beginning (which it technically is). It's almost as if when I went into remission people were saying, 'oh, you must be so relieved you're getting well, this is so great.' However I just cried a lot, and thought, 'I can't believe what I just went through.' I've read a lot about the grief experienced after breast cancer treatment and realized I suffered from something similar to posttraumatic stress disorder. It didn't all hit until it was already over. I believe things will get better in time, but that I greatly underestimated the psychological effects of this journey. However, I will continue to let God be my compass and celebrate my tiny victories.
"Oh my God! Oh my God! Oh my God!" I screamed in the phone. My mother's voice responded in sheer panic as she listened to me going ballistic on Saturday morning. "What's the matter? Are you okay? What happened?" she said flustered. "I started my period!" I exclaimed. The tears rolled down my face as I jumped up and down on my mattress. Ah yes, the tiny victories...
I had been sick all last week with horrible stomach pain, vomiting, loss of appetite, pure bitchiness (which wasn't too abnormal, haha)... and I was absolutely perplexed as to what was wrong. But everything became clear Saturday morning when I awoke to the lovely visit of "aunt flow" who had been missing since chemotherapy began. Some women never have their period return after chemotherapy and stay in a state of menopause for the remainder of their lives. Other women take 6 months to 2 years for it to return ... for me, it only took 2 months after I had finished chemotherapy. My body is absolutely amazing and it isn't going to go dormant without a serious fight. Thata girl! The fact that my period returned means that my body is resuming a healthy state and that my fertility may have been saved. Now, I am sure I won't be on a normal schedule for awhile, but at least my body is fighting hard, and that is great news!
This morning I had my first radiation treatment. Many people have already asked me what it was like and I will try my best to describe it.
I was very anxious this morning arriving at the radiological oncologist office and my Mom had not arrived yet (due to horrible traffic) to see me before treatment. I started getting nervous, so I reached into my purse and withdrew my little bear. My mother and I have little breast cancer bears that keep us connected when we are not physically together. The bears are named Hope and Faith and I would take my bear to chemotherapy when my mother would have to work.
When my name was called over the loudspeaker I took a deep breath, clutched my bear in my hand and walked through the door. I was ushered back into a small changing room. I undressed from the waist up, locked up my clothing and purse in a locker, put on a robe and sat in a smaller waiting area for the technician to come get me. I still had my little bear in hand. Part of me was pretending that I was going to get a hot stone massage or facial. Mmm ... that would have been a wonderful treat! Once in the treatment room, I sat my bear on the ledge with my locker key around its neck. I unrobed, laid on a slender table, and the technicians (there were two) put my arm, wrist, shoulder and head into the proper position.
The machine that is attached to the table is shaped like a 'C' with two round plates on each side. The lights dimmed and the machine sprayed a green grid across my chest. I could watch the grid's reflection on the glass face of the plate above me. The technicians pulled on the sheet underneath me to put me in just the right position. They used the stickers that were placed on my skin last week as markers for the green grid. Dr. Moulds entered the room prior to beginning the radiation to give the final "line-up" his approval. We were given the go ahead.
The technician soaked a towel in warm water and molded it to my breast. She explained that they fool the lasers into thinking that the towel is skin, so it penetrates the tissue deeper. I wasn't even listening to her. My heart was racing and I tried desperately to slow my breathing. All I could think was 'What if I am breathing too hard and they radiate my heart by accident?' They exited the room, I glanced to check on my bear saying a little message to my Mom and radiation began. Inside the plate metal pieces moved shifting and contorting into different shapes shining light onto my breast. The noises the machine made sounded like a robot over the big band music they were playing in the room. What was with the music choice? I thought to myself, 'Joey would love this machine because it reminds me so much of Transformers.' The technician came into the room and removed the wet towel which had turned cool now. The machine then circled around me and began radiating my back. Radiation only lasted about five minutes and the 'C' moved around my body as the shapes continued to change and dance across my skin. You know the feeling you get right before a limb falls asleep, like a numb/vibrating/tingling feeling before it starts getting intense? That's how radiation feels ... a mild case of a limb falling asleep.
Before I knew it, radiation was over, I was back in the small room getting dressed, joining my mom in the waiting area (showing her that I braved the treatment with my bear and knowing that she was right there with me) and heading off to work. Well, one radiation treatment down and 29 to go. I know that radiation is cumulative and that it will get harder, but I feel like nothing can stop me now. With God as my compass and my little bear, I am ready for anything.
Monday was my "simulation." I wasn't sure what to expect from my radiological oncology team, but the process was pretty painless. Two technicians had me fill out paperwork and consent forms to begin my radiation on Monday, August 11. Once I was undressed they took many pictures of my newly reconstructed body. I then laid on a CAT scan machine and they spent almost a half hour trying to find a position with my left arm raised, neck bent, shoulder rotated and wrist slanted that was comfortable enough to hold for several minutes each day of treatment. Once we found the right balance, they wrote down all the information of the angles and positions in order to put me in the same spot each time I receive radiation. The beams coming off of the CAT scan machine lined up onto my body. They centered me with the beam by taking the sheet under by body and just pulling me where they wanted me. Then they took a red permanent marker and made three tiny x's. One x was drawn between my breasts, and the other two along the sides of my rib cage. The radiological oncology technicians worked with such professionalism and precision. I was beyond impressed with how thorough they were and how kindly they treated me.
Once they had me all lined up, they did a CAT scan which lasted about 10 minutes. I closed my eyes and imagined myself lying on a secluded beach with a warm tropical breeze and the heat of the sun invigorating my body. Just as the cabana boy walked up with my Bahama Mama in hand, the technicians re-entered the room and slowly brought me out of the machine asking me not to move. They gave me two options for my radiation marks. I could either have three tiny permanent tattoos done that would look like freckles, or if I promised to be really good, they would place small, clear stickers over the three red x's and I would need to keep them on for the duration of the radiation treatments. Once I received confirmation that the technicians didn't care which option I chose in order to do their jobs, I quickly opted for the stickers. I have been wearing them for two days and so far so good. I feel like I should be in some espionage or pirate movie with these three red bulls-eyes on my body.
Friday I have my heart scan that I have repeated every three months to make sure the Herceptin isn't affecting my heart too severely, and then I have to go back to the radiological oncology office to have "films" done. I am not sure what all that encompasses, but we will find out soon enough. Monday is the start of the third phase of my journey. I am excited to begin and be completed in six short weeks.
Having just been "filled to capacity" my friend was enquiring about how my newly inflated left breast looked. (Just a reminder, my plastic surgeon could only fill my left breast due to the need of radiating the center of my chest.) We snuck into the bathroom and once inside the handicap stall I lifted my shirt revealing my newly stretched breast. "Holy crap, Jen, that's huge!" she said. "I know, right? Look at it from the side." I turned showing her my newly defined profile. "I cannot believe how great it looks," she responded. "You can feel it if you want," I offered. She raised her hand, and then drew it back in hesitation, and then she lifted her hand again and touched my breast. "Oh my God, it's hard as a brick. It doesn't feel like my other girl friends that have had implants," she said. We both laughed and I explained that it was "brick-like" because the expanders are made with hard, thick plastic unlike the final silicone implant that will be squishy and breast-like. Not only that, but my skin had just been stretched an hour before so everything was extremely tight and sore. I then took my friend's hand and pressed it against the side of my right breast that hadn't been filled. I felt the implant ripple under my skin and pop in and out. She quickly jerked her hand back and said, "What was that?" I think she was worried that she had hurt me. I laughed and told her that's what the implant feels like when it hasn't been completely filled. When I roll over in my sleep at night the implant that hasn't been filled dips and pops continuously ... it is the weirdest feeling in the world.
I think more than a dozen people have been privy to checking out my "transitional pair." I consider it a learning experience for my family and close friends. They have had to experience and endure a lot of this journey with me and I want them to know that I am really okay. Most people are surprised with how good my "transitional pair" looks. I think we all expected it to be much worse than it is and they really do look good.
Although being lopsided is not ideal, it is just temporary and not the end of the world. I have learned how to work around it and no one else can tell besides me, anyway. It is just not that important in the scope of things. I need to get through this third phase of my journey, and then I will be evened back out again. I look forward to that, but I am not obsessing about it. I finally feel like the old (but improved) Jennifer is resurfacing and I really must admit that I have missed her.
At a concert Saturday night I danced with my best friend's two-year-old daughter, Hadley. At the end of the evening she reached up for me to carry her. Walking to the car I spun her around singing the lyrics to Tommy Tutone '8675309 Jenny' that was being sung by the '80s cover band, The Reflex. She looked up and pointed to the sky saying 'plane.' I told her that they were stars and they were far away. She repeated the word, 'stars' over and over. In that moment, I was completely present and treasured every step I took down that gravel path with Hadley perched on my hip.
