Tuesday, December 3, 2013

A Baby Story

In the minutes and days after Harper's birth, I told anyone who would listen that she was going to be an only child. My water broke late on a Tuesday night and she was born early on a Thursday morning. The time in between those events was painful and the act of pushing her out of my body lasted a grueling 2 hours. It was the hardest thing I've ever done. Even as they wheeled me out to the car with my perfect new baby in the car seat carrier, they asked "will we see you back here in a few years?" "Hell no!!" was my answer.

In typical fashion of my life, Harper's birth was anything but ordinary. I was induced right at 40 weeks, as they had discovered that my amniotic fluid was low and my blood pressure high. I was not at all effaced or dilated and it appeared that Harper was content to stay put. I went into Harrisburg Hospital in the evening of Tuesday, December 13th. There they administered a gel to my cervix to ripen it. They assured me that this probably would not work and that I would need to come back in the morning for more gel, followed by Pitocin to induce labor. Eric and I left and went to Jo Jo's pizza for what we would soon find out would be our last meal as a family unit of two.

I went to bed and woke up at 11:45 to a gush of fluid when I turned over. My water had broke. I remember being so excited that I got to experience water breaking like I always saw in the movies since many women do not have their water break spontaneously. We left for the hospital around 3 am and settled in for an unproductive 10 hours of no progression in my labor. Finally at 1pm they started the Pitocin and by 5pm I was in agony and chanting in tongues. I knew there was a way out--the celebrated epidural.  The thing is, I took a birthing class and they teach you how to power through this pain without medicine. My back labor was terrible though, surely I was 8 cm now and gave it my best effort. The nurse checks my progress. 1 cm. It had been 5 hours of Pitocin on full blast and I was only 1 cm? And here I was, ready to ask for the drugs at 1 cm dilated. I was weak!

I go through with the epidural and it only works on half of me. I have no idea why but half of my back still feels every contraction. I suffer more and then somehow I manage to drift off. I wake up to the tell tale feeling of needing to push and the nurse checks me. I'm 10 centimeters. It's close to 1 am and show time. The nurse tells me to start pushing and I say wait a minute, where is the midwife? She tells me we push until right before the baby is ready to come out, and then my midwife will come in and deliver the baby. This horrifies me but I start pushing. And pushing. And pushing. For 2 hours I do the most physically demanding thing I've ever done and I feel like I'm going to throw up with every push. Finally the nurse comments on how much hair the baby has and says she's going to get the midwife leaving Eric and I alone in the room. I'm so afraid this baby is going to come out without a medical professional in the room. The nurse returns with my midwife, an awesome woman who delivered most of our friend's babies and 4 babies earlier in her shift. She sits down on the edge of the bed and says "let's have a baby!" I continue pushing, aware of everything since my epidural is only half doing its job. I'm in the zone and then I hear "Get a doctor, I need a doctor!" I'm jolted out of my baby birthing trance and filled with fear, what was wrong with my baby? Again she says "Somebody get a doctor, I'm going to pass out." My eyes fly open and there I see, on the edge of the bed, my midwife slumped over unconscious. What the hell did I have going on down there that made her pass out?! The nurse hits a button and every nurse on the floor comes running! They wave smelling salts under her nose and she comes to. They put her in a wheel chair but she insists she's ok, that she can deliver this baby. They tell her no and take her to the emergency room. The nurses turn to me and tell me to relax and not push while I scream at them to get a doctor in the room. They assure me that a doctor will be here soon. I apologize and tell them that I'm sorry, but I can't not push. A contraction comes and so does my perfect, drama queen daughter, on to the edge of the bed, with no one to catch her.

My midwife never found out what happened that caused her to pass out, and it had never happened before or since. I don't blame her for anything. Do I wish a doctor had been readily available to take over? Of course. But in the end, Harper was fine, I was fine, and we certainly would never forget that night.

But like all new moms, I somehow forgot the pain of childbirth within a few weeks time, and declared I was having another baby, maybe a few. I loved being a mom, I loved breast feeding, and I had loved pregnancy. I couldn't wait to do it again.

Two weeks ago I went to my first OBGYN appointment since the day I went in there with a lump in my breast. I closed myself in the bathroom and cried because the waiting room made me think of being pregnant with Harper, the signs promoting breast feeding on the wall made me nostalgic for a time when I felt my body was doing what it was made to do. If cancer had never happened, I would have been trying to get pregnant right now or perhaps I would already be pregnant. I might be coming in for my 12 week appointment, eager to hear my baby's heart beat and make guesses at the gender. Instead I sat in the exam room and spoke with my doctor about oopherectomies and hysterectomies and hormone tests to check that the hormones that make me a woman, were suppressed. I was never going to have another baby again and there was a possibility that in due time, every body part that made me able to grow and then nurture a child would be removed.

Growing up, all I wanted was a daughter. I always pictured myself having one child who was a girl but I assumed that it was because that is what my family unit looked like growing up and I couldn't picture what I didn't know. It turns out that our family will be what I always imagined. I can't even begin to think about what my life would be like without Harper and every day I am glad that I didn't find my tumor any earlier if it would have meant not having her. I am more thankful for Harper than I could ever put into words and know that I am beyond blessed with this little person who has such intelligence, personality, and spunk. But I'm still angry that cancer is taking away my ability to make another wonderful child.

My Harpy turns 2 years old in less than 2 weeks and I can't believe how much joy can fit into two years. Here is my miracle and biggest blessing:

Saturday, November 9, 2013

Life on the Radiation Table

They really do try to make radiation as pleasant of an experience as it can be. The ceiling of the room is covered in stickers of planets and some of the ceiling panels have been replaced with a blue glowing constellation. The technicians are kind and personable. The whole experience, even as your skin is getting more and more burnt, is nice.

The radiation machine looks like one of those microscopic sea creatures. I had to google it to figure out what specific creature I meant and have decided that it looks like a Water Bear. I try to keep my eyes closed for the majority of the treatment since I have this irrational fear that if I open my eyes, all of the radiation in the room will burn them out of my head. On the occasion that I absolutely must sneak a peak, the face of that radiation water bear is right in my face, and if you look beyond the black tinted window, there are things that look like teeth. They open and close in order to take X-rays, shoot radiation beams, eat my flesh, I don't really know.

A water bear:

I pride myself on knowing a lot about my disease and treatment but radiation is the one area I have not read up on. Frankly because it scares me. We spend our whole lives trying to avoid radiation: don't swim in the water by Three Mile Island, cover your body with metal blankets for dental X-rays, don't put your head in the microwave. After being told to avoid it your whole life, its strange to be strapped down to the table, just laying there and taking it, intentionally.

I'm in my last week of radiation therapy. Each evening my chest is bright red and it fades a little bit by morning. It is starting to get really sore on my side, the area of the lower axilla they are radiating because of the positive lymph node.

But as in all hardships, this too shall soon end. I can't believe I am a few days away from the end of my standard treatment. It's been a long 9 months and at the same time it's flown by. Because I've been blessed to be in the Herceptin arm of a clinical study I will continue to go to the infusion center every 3 weeks until the end of June. I will also keep popping my Tamoxifen each day, running 4 times per week, juicing, drinking the green tea, trying to lose this damn chemo weight, and of course lots of praying.  It comforts me that there are things I can still do after treatment ends to make me feel like I'm continuing to kick cancer's ass.

Wednesday, October 23, 2013

He Listens

I arrived at the medical center before 8 am for my radiation practice run. Medical students shuffled across the parking lot from the student housing, sharply dressed sales people wheeled cases of samples through the doors, and the female valet parked cars. I couldn't help but think that I should be any one of them instead of myself, preparing for 6 weeks of another potentially harmful treatment that while it may help rid my body of cancer cells, is not without damage to other currently healthy organs. I wore a pink ribbon baseball hat over my short hair and was in the cancer institute, so there was no mistaking my affliction. Many people that passed me said hi, the others stared a beat too long. I knew they were all thinking the same thing, that poor girl, she's so young. For some reason, this doesn't bother me as much as it did while I was going through chemotherapy. Maybe it's because I know that I'm about to reemerge as a new person, a hopefully cancer free person, who once again, looks healthy to the naked eye.

I will spare the details of the radiation simulation because they are boring. It was a bunch of laying, exposed breast pointing at the ceiling, techs calling out numbers, and X-rays being taken. A red marker draws a rather large outline of the radiation field and I am on my way, and told to return tomorrow for treatment # 1.

I went upstairs and found myself following my nose towards the Starbucks, and my heart, towards the chapel. I spent a lot of time in that chapel last summer, on my knees begging for my dad to get well. I wrote my prayer requests in the book specific to that days needs-end the fever, regain kidney function, wean the ventilator. On this day, I read over the prayer requests and felt the pain of every person who put that pen to paper. This time, I added one for myself. Afterwards I entered the worship area and took to my knees in the familiar spot. I asked God to give me strength to get through this next part of the battle with as much ease as He's allowed me so far. I prayed that I would be cancer free for the rest of my life, or at least long enough to meet my grandchild and dance at Harper's wedding. I asked that I be used for a purpose.

I felt moved to open the book of Psalms laying in front of me and read the first thing my eyes focused on. What do you know? The Lord may not have given me any answers yet, but He proved that He was listening. I read:

Jesus answered and said to him "What I am doing you do not understand now, but you will know after this."

Thursday, October 10, 2013

Found: Lost Thing

It's easy to say that life has been a nightmare since I was diagnosed on February 15th of this year. But if I really stop and think about it, I find that some of the best moments of my life have happened in the last 8 months since cancer rocked my world. Some of them even happened because of cancer.

A few weeks ago there was a post by the Young Survival Coalition-Northeast Region on Facebook. They were requesting a young survivor to speak to a girl's athletic team at Cumberland Valley High School in Mechancisburg, PA. Was this for real? They needed someone to talk to some female athletes at MY high school? As soon as I read it, I knew it was the soccer team, the same team I played on 16 years ago. I felt chills at how this opportunity felt perfect and like fate.

On Friday night I had my opportunity to speak to the JV and Varsity soccer girls from CV and Carlisle for the kick off of their annual Breast Cancer Awareness Game that benefits the Young Survival Coalition. They briefed me that no detail was off limits and the girls were not afraid to ask questions. I began by telling story from diagnosis through treatment and then opened it up to questions. The questions went on for about 40 minutes. These girls were phenomenal! They asked so many questions, like how do you know what a lump feels like, what foods were good for reducing breast cancer risk, how has my faith changed since diagnosis, when should they start getting screened for breast cancer, and questions about my wigs, my surgery and my reconstruction. I had the time of my life! I took my wig off for them and showed them my fuzzy head and how easy it was to put the wig on, which amazed them. Afterwards, a group of these fabulous girls surrounded me and asked some more questions and they got to meet Harper. I got a couple babysitting offers too! Michelle, who was in charge of the event presented me with a Alex and Ani Young & Strong bracelet that I absolutely adore. I can't believe they were thanking me for being there when it was completely my pleasure and an honor. There was something so energizing and healing in speaking about the last year. In the time that I was up there I got to educate, make jokes, laugh, bare my bald head, and yes, even cry a little. It was therapy that was benefiting not only myself but all those girls. The night couldn't have been more perfect for me and I hope that in some way, I helped those girls and have made enough of an impact so that they do their self exams each month.

When I first got up to the podium, I was nervous. I freaking hate speaking in public. I'm a drug rep and I speak to groups of people all the time about my medicines and disease states. Those people, the doctors, are much smarter than me and I hope that I make it through the conversation without them asking me something that I don't know so that I don't lose any credibility. I hope that I make it out of the conversation without screwing up and looking like an idiot. But I couldn't mess this up. It was my story and nobody knows my story better than I do. Nobody knows what my experience with cancer has been like better than me, and I couldn't answer a question about myself incorrectly. The longer I stayed up at the podium, the shaky voice subsided and I felt more comfortable and I never wanted to leave. I realized that this is what I want to do. I want to share my story through social media, speaking engagements, the mentoring of cancer patients, and volunteering and fundraising for the ACS. It is what I'm going to do.

I always wondered what my "thing" was. What was I passionate about? A lot of people I know have a thing that sort of defines them...an obsession over a sport, TV program, musical group, a specific craft they are good at, or even an expert level of knowledge in regards to certain parenting techniques. Sure, I like a lot of things but I never had a fanatical enthusiasm for anything except taking bubble baths, shopping at Pier 1 Imports, and consuming pumpkin flavored food and drink.  I've been searching for my thing for years and maybe it showed up in the form of a thing in my breast that stopped my heart that February morning. Since last Friday night, a flip has been switched inside of me and I feel a level of positivity that I haven't felt since the days before my cancer diagnosis when I felt like I had my whole life ahead of me. I found my thing. And it's more than just a Pumpkin Spice Latte. Thank God.

 Speaking to the Cumberland Valley and Carlisle JV and Varsity girls soccer teams on Friday, October 4th, 2013.
Being introduced on the field with the varsity team for their annual Breast Cancer Awareness Game benefiting the Young Survival Coalition.

Wednesday, October 2, 2013


I'm not sure what I feel about my favorite month of the year being hijacked by a pink haze that serves as a constant reminder of what I've been through and what will always be a part of me from here on. In the past October was the start of cool and crisp fall weather, that smoky smell in the air, gorgeous scenery, the excitement for my birthday and Halloween, and in recent years, the celebration of our wedding anniversary. Now it takes on a whole new meaning for me, as we are only at day 1 and I am unable to escape the pink.

I'm two and a half weeks out from chemotherapy. I still have 9 months of Herceptin to go, 6 weeks of radiation that has yet to start, and 10 years of Tamoxifen. Breast cancer is still a large chunk of my world, and as much as I hate to say it, but it's still my identity at this time.  Even so, on Saturday night we went to a preseason Hershey Bears hockey game and I was walking along the club level admiring the jerseys behind the glass. Every few jerseys would be one with a pink ribbon on it. And that moment, my moment of being a completely normal person looking at jerseys and not thinking about cancer, was interrupted by the reminder of the pink ribbon. And I thought about how last year I would have remarked at how pretty the pink ribbon jerseys were and this year looking at them, I saw scars, surgical drains, huge syringes of red liquid, a face in the mirror that I don't know, dark nights of despair, and mornings that were worse because it wasn't all a dream. That pretty pink ribbon took me out of my normal life and reminded me, made me aware, of the fact that life will be anything but normal for me for a while. But to someone who hasn't lived through this, or along side of this, it's just a pretty pink ribbon.

I'm not knocking Pinktober at all. I get it. Awareness is a good thing. If everything pink makes you feel your boobies for the first time or for the first time in a long time, then it worked. I like the idea that something I would normally buy, now donates a portion to breast cancer charities and research. I've even been known to, in the past, come home with a brand new pink tennis racket and pink tennis balls because 1.) They were cute and pink, duh and 2.) It went to a good cause. Did I play tennis? No. But I wanted to help end breast cancer! There is plenty of talk of "thinking before you pink" on the internet. I don't want to get into it in this blog, but make sure you know where your donation is going and make sure that it's going to research. Research will be what ends this disease. They've made amazing advances thanks to research. Awareness will not be the end of breast cancer.  Money doesn't need to be spent on awareness.  I'm sure any breast cancer survivor and we are a plenty (remember 1 in 8), will gladly make you aware for free. And I'm pretty sure that by talking to a breast cancer survivor and hearing their story, how they went from a completely normal healthy life to a life terrorized by cancer in the instant that their fingers brushed over that lump, or when the voice on the other end of the phone said something was seen on their annual mammogram...that will stick with you longer than seeing NFL football players wear pink cleats.

I guess what I'm trying to say is, breast cancer awareness already is my mission and I'll do it 12 months out of the year. I will talk to anyone about my story, and I won't leave out the gory details. Anyone who reads this blog or is friends with me on Facebook knows this about me. But believe it or not, there are times, maybe just a few minutes each day, where breast cancer is not on my mind. But this month, I won't be able to escape it and that's still hard. I long for the days when I thought I was healthy, when a pink ribbon was just a pink ribbon, and when I thought breast cancer was an old woman's disease. But now I'm aware and I've become aware in a difficult way. And I'm here to say this:

Tuesday, October 1, 2013

Chemo Finale in Pictures

I can't find words to describe this day so I'd rather tell it with pictures. It was exciting, full of amazing surprises from amazing people, and very emotional.

The cupcakes I brought for the chemo nurses and my cheering section:

My neighbors surprised me in the biggest way: with a pink ribbon house!! I live in the greatest neighborhood!

Tuesday, September 10, 2013

Mixed Feelings About Chemo's End

My mind has been pretty messed up lately, but what else is new? Are you sick of hearing about it yet? I don't have a lot of physical symptoms to go on about and my mental and emotional wreckage takes the cake of my worst chemo side effects.

My next chemo, on Friday the 13th, is my last. I'm slightly nervous about the Friday the 13th thing as I've always had rotten ones so hopefully this is the opportunity to turn the day around. Or I can expect bad labs and an anaphylactic reaction, we will see. I'm ridiculously excited to be done. I've ordered 4 dozen cupcakes (funfetti w/white buttercream and pumpkin w/cream cheese icing, both with pink breast cancer ribbons) for the nurses and anyone who wants to come to see me ring the bell. My chemo is at 9:30 so my assumption is that I'll be ringing the bell around 1130 or noon.

I'm scared to end chemo. The ritual of my Fridays is comforting, right down to the smell of the alcohol swabs that clean my port, and the needle stick that I always hold my breathe for. The familiar faces of the nurses I see every week and the welcoming chemo room with the comfy chair or bed, make me feel safe. The drugs they give me before the infusion makes me feel warm and sleepy and the chemotherapy makes me feel like I'm taking action in this fight, using a weapon of mass destruction on circulating cancer cells. I am always happiest on infusion days and it has a lot to do with what I just described. I show up to the big fight on those days.

The days after chemo, I show up to the couch. I show up to the iPad which tells me stories of women with better prognosis than myself who are now stage 4. And then fear and anxiety are the ones who show up, and I cry for the biggest thing I lost this year: the assumption that I would grow to an old woman and live a normal life span, and the innocence that goes along with it. I understand that any of us could get run over by a bus tomorrow, and that if my cancer does come back, what sense is wasting the mean time with worry? I understand that the majority of patients with my stage of cancer and treatment are alive 10 years from now, but what about 20 years from now? And what about the 20% of the women that aren't alive at 10 years? How were they different from me? How can I make sure I'm different from them?

I'm trying to stop blaming myself for getting breast cancer. I've never blamed any of the breast cancer survivors I know in real life, or the women whose stories I've read on the net. So why do I constantly ponder if its the heavy drinking I did in college or the years after, the parabens in all the fancy lotions and makeup I bought, assuming the more expensive, the better for you. Maybe it was because I was young and vain and used a tanning bed years ago. Or was it that chest CT scan I had in 2007? Maybe it's because I'm lazy, and not a good cook, so I nuked a lot of meals. Maybe it's the diet soda, maybe it was my addiction to chocolate. If you look up legit risk factors, I had 3. 1. I'm a woman with breasts, 2. I started menstruating at the early age of 9, and 3. I waited until after 30 to have a baby. I did, however, breast feed my baby which is supposed to reduce risk, maintained a healthy body weight, hardly drank in recent years, and sucked down the green tea. I will never know if I did something to cause this but if I don't blame other women, why do I blame myself?

Another realm of the depression is coming to light: how do I acclimate back into normal life when life will never be normal again.  I can't pretend that this never happened, that I'm not scared of the future, and that I'm anywhere near the person I was 7 months ago. To boot, I don't even physically resemble her anymore so the reminder is in the mirror daily. Those in cancerland speak of a "new normal" but I don't know what that is yet. To me it sounds like a version of life that is somewhat like the way life used to be, with a heavy fog of fear hanging over it.

Last Thursday was a really bad day. I'm not sure why, there was no particular event that set me off, but I spent most of the morning crying. It was just one of those days where the reality of everything that I've been through in the last six months had sunk in a little deeper. I was able to express some of my fears to my husband, which was somewhat therapeutic but I was still pretty despondent. Right before lunch time, Eric came down stairs and said "Put your shoes on, we're going for a walk." We ended up doing jogging and walking intervals. I must be a sad sight to see me when I'm trying to jog, my body is 15 pounds heavier than it used to be, my legs are like cement, and my muscles have wasted from a summer on the couch. I felt like I was going to die, but afterwards I felt much more alive than I had that morning. And I figured out the answer of what I should do in this "new normal": RUN. Run from the cancer. One week after chemo ends, I will be lacing up my shoes and starting a couch to 5K program with the goal of running a 5k, 10k, 1/2 marathon, and eventually a marathon. I've never had a reason to run before now. Until now, I never had something chasing me.

Friday, August 30, 2013

Cry Baby

I've cried four times today so far. I don't know what is wrong with me, besides the obvious. The first time was because I was thinking about Amanda and her wonderful family that came with her to her oncology appointment today and to see her ring the bell because she is no longer doing chemotherapy. She had to end a little prematurely but she is DONE and on to radiation. Anyway, her little girl is so sweet and her parents are really great. It made me think of my Dad. I have had my mom come with me to chemo sessions and she's a great comfort but I found myself imagining how it would be if both of my parents were able to sit here with me. No doubt my dad would bring the comic relief and I miss his presence terribly.

Then I go into my appointment with my oncologist and she does a thorough exam. At the end I show her a soft squishy lump on my left ankle. I've been obsessing over it for the last week. If I turn my leg a certain way and flex it, it really sticks out. But it's soft and I can push it in so it can't be cancer right? I was afraid to ask her. Breast cancer doesn't metastasize to the ankle in many cases, if any, but I was convinced that I was one of the small percentage of people who got a brand NEW cancer while on chemo. This is how my screwed up mind thinks. She said it was right on a blood vessel and she thinks it's a varicose vein. My husband said "so it isn't cancer?" which he already knew and she laughed and said no. Then she sits down and got really serious and said "I am really sorry to say this but..." HOLD UP! WHAT THE F$&@! My heart stops and she continues with "you've really been gaining weight and you're not even on Tamoxifen yet so could you try to scale it back?" This made me go off, not because I was mad at her, she's only stating the obvious and giving me the advice that she should as my doctor. But seriously. I eat whole grain cereal with almond milk for breakfast, a big bowl of kale with nuts and berries for lunch, organic chicken and veggies for dinner. As my mom said "People don't gain weight on what you're eating." We'll except me. My study nurse chimed in that I seem to be very sensitive to steroids and hopefully this will come off after treatment. I committed to a strict diet to lose what I've gained over the course of the next few months before I start Tamoxifen which will apparently make me a huge fatty all over again. This was all very annoying but it didn't make me cry.

While meeting with the oncologist I missed Amanda's end of chemo bell ringing. Amanda has been with me since, literally, the beginning. She was diagnosed days after me and we have done it all together. She had some very serious complications during chemo and her chemo was ended 6 weeks early, a decision that is truly in her best interest. Through it all, she has been the strongest baddest chick ever and I really wanted to be there to celebrate her end of this part of our nightmare journey. But I wasn't and it sucked so again, tears.

Then I had to shed a few tears over the relief that the doc doesn't think my leg lump is cancer. But then I realize, this is how it will always be. Every strange lump, bump, red mark, or ache will be cancer to me. This fear, this feeling that cancer is lurking, ready to chase me down again will always be there. My doctor assures me that this is normal and that as more time passes, I will feel stronger and more confident in my body.

Now it's infusion time and I'm feeling super feisty and Eric and I have a few laughs. I do a little pole dance with my IV pole but he doesn't give me any money. I head to the bathroom for one of my many pee breaks thanks to a big bag of saline. As I sit on the throne, I look up and read the bag that's dripping into my veins. In big words "chemo therapy". I look at myself in the mirror. I have aged but I am still young. Chemo. Therapy. How is this my life? How did this happen? I dissolve into tears as I sit back down in my chair.

Not a minute of this has been easy, even though I've escaped many hard side effects. The emotional toll has been worse than I've ever imagined. And soon I will enter what is the hardest part for many patients, acclimating back to "normal" life. I find that if I make plans, like following a strict diet and starting a running program with the goal to run a 5k, 10k, half marathon and eventually, a marathon, I feel in control, like I'm still fighting the cancer. I know it won't be easy, but easy is so 2011.  I'm  looking forward to my new life, my renewed life, and I hope I adjust to leaving Jenna With Cancer behind and just becoming me again.

Thursday, August 15, 2013

Watching Me Like a Hawk

Yesterday morning I got out of bed at 6:30 am in order to attend the Making Strides Against Breast Cancer kick-off breakfast at the Holiday Inn. As I dropped the dogs off at the Canine Clubhouse at 7:30 am, I marveled that there were people out and about this early. Apparently I've completely forgotten what its like to be in the working world during my hiatus, thanks to my wonderful daughter who lets me sleep in until 8.

I got to the hotel, registered, and got in line for food. Then I made my way to the front if the ballroom like I always do since my eyes are pretty bad. I picked a table with an empty seat and friendly faces and it changed the course of my day in that moment. A woman at my table was wearing a pacesetters badge, which is a title I desire for myself. In order to become one, you must raise at least $2,500 through your fundraising. During the kick-off, this woman got up and told her personal story and her history with Making Strides. She revealed that she was diagnosed with breast cancer initially at age 31 and again five years later, this time with a more advanced stage. This was followed with "I am now a 15 year survivor from my first diagnosis, and a 10 year survivor from my second diagnosis." She looked great, the picture of glowing health and a passion for a cause that was realized during her battle with cancer. It occurred to me that this could be me, this WOULD be me. When I hear a negative story or a poor outcome, it stays with me, weighing me down with the thought that I won't be any different. I choose to let Teresa's story lift me up and show me what I can be: someone that not only survives this, but thrives in this and finds a purpose that may not have been unveiled without a cancer diagnosis.

After the program ended, I needed to express my gratitude for her story. My eyes filled with tears as I thanked her, and I could barely keep it together. I'm pretty good at keeping myself composed in front of others, so this was a surprise. We started talking and I was introduced to two other women who were with her, one was the event planner for the American Cancer Society and another was a very active volunteer. I expressed my desire to volunteer my time to them and they invited me out to breakfast to continue our discussion.

We went to a nearby diner and I immediately felt at home with these ladies. The talk of the upcoming events thrilled me and brought me back to the days when my career was event planning. Only these fabulous events raise money that will be used to research a cure for cancer. These events were now the most important events I could ever help plan. It was decided that I will join them as a volunteer for future events. I felt fulfilled.

As we were eating, Teresa looked out the window and said "Wow, look at that bird! Is that an eagle or a hawk?" I looked out and answered that it was a hawk. She said "you really don't see hawks too often, do you?"  "I do, I see them all the time." I answered.

Ever since my dad passed away, there are hawks. If I'm driving in my car and crying or struggling with something, I look up, and there's a hawk. If I'm walking Harper in her stroller and thinking of my dad, I look up, and there's a hawk. It became my thing to say "hi Dad" and it became his thing to show me hawks when I was in need. The day of my breast biopsy, on the way to the procedure, a hawk practically skipped across the hood of my car at a stop light. At that moment I had a feeling that something was about to happen that my dad needed to be there for. I had 3 consults to find the best breast surgeon, but when I walked out of the Hershey Breast Center after my consultation, I looked up in the sky and saw multiple hawks. The first thing I saw after leaving my port placement surgery was a hawk. I took these as signs that he was guiding me on the right path. 

On July 28th, the anniversary of my dad's death, my mom and I went out to lunch after church. We drove separately and parked our cars next to each other. As we walked together towards the building, a large hawk flew right over our heads, very close to us, and perched up on and electrical wire above us. There were no grassy areas around us where this hawk would be stalking his prey, only a concrete parking lot. He was round and gray in color, not the usual brown. This was the first time a hawk actually looked like my dad. And he just sat there, watching us, letting us know he was there.

At the diner, this hawk sat in the grass, adjacent to my spot at the window. Then he flew up to the top of a light structure in the parking lot. It felt so normal, seeing this hawk, after all they are always near. But I realized this wasn't true for everyone when I saw that a man had stopped his vehicle in the middle of the parking lot and was taking pictures of this impressive bird with his cell phone camera. Then my hawk made a big show of flying back past us, turning around, and gliding back over the cars directly outside our window. My new friends were amazed and said what I already knew to be true: my Dad was there to let me know that I was exactly where I was supposed to be.

 Hi Dad!

Thank you Marsha, Michelle, and Teresa for a lovely breakfast and your infectious enthusiasm for a wonderful cause that has now become my passion. And thank you for validating that this hawk thing is really happening and I'm not a crazy person.

Thursday, August 8, 2013

Not a Rainbow Fart

I mentioned earlier today that I didn't want to update my blog when I was feeling depressed, because I didn't want to bring down the world around me. A friend reminded me that this blog is to document how I feel and I'm not here to entertain people with "rainbow farts and unicorns." I laughed my head off and then I thought yeah, she's right. Maybe this will be therapeutic for me.

For the most part, things have been going well lately. Chemo has been uneventful, which is the best you can hope for. Sure I'm tired, have a few aches and pains, and a bald head, but I feel like I'm living a pretty normal life. My counts have been decent and my infusions have all gone as scheduled which is what I want.

I'll go along feeling OK, feeling optimistic, and then I'll read a story. I have been following a bunch of stories on Facebook in recent months about young people with cancer. One was the infamous Talia, a girl whose story touched the entire country. Another was a local guy, a ultra marathon runner who had stage 4 brain cancer. Another was a guy in one of my online cancer support groups-30 years old, a non-smoker, with stage 4 lung cancer. Those are just a few of the stories. Well lately everyone has lost their battle. These are young people who fought for so long and had thousands of people rallying behind them, yet cancer still took them. I find myself sobbing, my heart broken for the family and children they had to leave, the life they missed out on. When you are healthy, you read these stories and you sympathize with the family members. When you have been diagnosed with cancer you read these stories and you empathize with the dying patient. These people, the ones who have passed, were amazing people, people who changed the world and did great things with their lives, far better people than me. Why would I be spared if they weren't? It's a stupid question, but one that creeps into my mind anyway.  I know that none of these stories were mine, in fact, none of these people even had my kind of cancer. But cancer is cancer and it kills people and I have been reminded of it too often lately.

So that's what has been weighing me down. That said, there is always a story of hope to pick me back up. Recently my husband has been traveling to Indiana for work. He always tries to make it back home to come to my Friday chemo appointments with me. While at the factory he was working at he mentioned going home for chemo and a woman stopped him and asked him what type of cancer his wife had. Here, she too had breast cancer at age 32 and went through chemotherapy. She was now 39 years old and cancer free. These are the stories I cling to. One of my favorites that I have saved on my phone is a woman who was diagnosed when her son was a few months old. She went through extensive treatments and was told that the cancer would probably come back. To this day she is cancer free, and her "baby" is now 32 years old. I have no reason to believe that I won't be telling the same story!

Oh another thing that really burns me up-literally-is chemopause. Chemotherapy puts a woman into menopause, hence the term chemopause. It's actually a really good thing. If my ovaries aren't working, then they aren't producing estrogen aka cancer juice. I want this chemopause, in fact once it's over, I will probably seek out menopause through shots that shut down the ovaries or by getting my ovaries removed. While I think my oncologist thinks that this is extreme at my age, I personally feel that it is essential to beating this disease.  So menopause is something I need to get used to, and it takes a whole lot of getting used to. Hot flashes are no joke! My friend Margo calls them a "personal summer". My least favorite season. I keep the fan on full blast at night so I can kick off the covers, covered in sweat, only to have to bundle up minutes later when it passes. Luckily (or unluckily?) they mostly happen at night, so while I don't ever have a restful sleep, I don't have to worry about being a huge sweaty pig in front of many people.

Speaking of pigs, I am so bummed out about this constant weight gain. I knew this was a threat, that most women gain weight on chemotherapy for breast cancer, but it doesn't make looking at the constantly moving scale any easier. It reminds me so much of when I was pregnant, although I could blame some of the increase on the growing baby and I knew that I could breast feed to lose the weight. Now I don't even have breasts! What the hell?! Is this really my life?

That's something I've said a lot lately. You really do adapt to shitty situations but then all of a sudden, the reality of it all hits you and it's just too much to think on. Cigna informed me yesterday that they have approved me for Long Term Disability. I need to fill out a lot of paperwork and my employer also requires that I file for Social Security if I'm going out on LTD. Social Security? I didn't know I was 70. Excuse me while I have a hot flash. Is this really my life?

Tissue expanders. I am now rocking about 500 cc's of saline in my rock hard chest. I really worry that I'm going to knock the wind out of people when I hug them. It's actually kind of comical, as my new "foobs" are a couple inches higher than my old set. So a bunch of shirts that used to be low cut and cleavage baring, now fully expose a foob. My implant exchange is a year away so I better get used to it. Until then, I dream of soft squishy implants at night, in between hot flashes.

I'll end on a good note. My hair is growing! Everywhere. I actually have to shave my legs on the regular again! That sucks but it's nice to do something normal. The hair on my head increases every day and I'm hopeful that by the end of chemo, I actually look like I have hair, even if it's just the G.I. Jane look. It's strange to me that my hair is growing on chemo (what happened to destroying rapidly dividing cells?) but I heard that this happens often with Taxol so I'll take it!

Friday, July 26, 2013

The Year Mark

This day last year I noticed my dads oxygen levels were getting lower despite being on the full setting of the ventilator. This day last year was the beginning of the end and he passed two days later. It has been hard not to relive each day spent in the hospital over the last month, especially since I've spent some time in the same hospital for my own cancer treatments.

One thing that has been so strongly apparent to me is that I'm so happy to be where I'm at on this July 26th than where I was last year. That seems strange. My dad is gone now, I got cancer, I'm doing toxic treatments that will hopefully prevent this cancer from returning, although its no guarantee, and in the meantime could cause me secondary cancers, permanent heart damage, etc.Who the hell would want to be here!? Well, there is nothing worse than watching a loved one pass away, and to be able to do nothing about it, to feel completely helpless.  This year, the burden is mine, this cancer-I own it. It's so much easier to feel in control of a situation when the situation is yours to control. I was a different person at this time last year. I was so innocent, so ignorant, my life was so easy up until that point. This year I am hardened, toughened, and my shell is callused. I no longer freak out over the  small things and let them consume me because I know what real pain is and I know what the big things are. I also know that you can live through real pain, survive it, and get stronger. Prior to my father's illness, back in the sunshine and rainbow filled first 32.5 years of my life, I used to pray to God to grant me an easy time here on Earth. Please spare me from losing my loved ones before they are old and grey, please spare me from major illness. "I'm not strong enough to handle things like that, God." I said.  Out loud. On more than one occaission. But my life's path had plans to show me that I was strong. And my situation this year is mine to control, and finally, I know that I am strong enough to to handle the hard things.

I wonder what my dad would think of my situation. If he were here I think he'd be strong, I think he would comfort my mom, and I think he'd bring comic relief. I still think he does those things. I feel comfort right now, sitting in this hospital bed and getting a chemo infusion. Last year at this time I would stand by his bed and talk to him but I didn't know if he heard me. This year, I know he does.

I miss you every single minute of every single day, Dad. This has been the hardest year of my life, and filled with more pain than I could have ever imagined. I've spent the last year trying to make sense of your death. But if I believe that it was so that you could watch over me and guide me, then it makes the pain bearable. The day I see you again in Heaven will be a glorious one, but I hope it's not for at least 40 more years.

Tuesday, July 16, 2013

Hanging In There

This Friday will be Taxol/Herceptin treatment #4! We are moving right along. I'm a little nervous about my white blood counts. As I mentioned before, when I was on AC treatment, I got the Neulasta shot which boosts my white blood cells to help me fight infection. It worked awesomely. With weekly Taxol they don't give the Neulasta shot because its not as bad on your blood counts as Adriamycin and Cytoxan. Last week before Taxol #3 my WBC was 2.3 and the week before it was 3.2. So it's steadily going down. I'm not sure at what point they postpone chemo but I hope I don't hit it...I just want to get this over with and start getting my life back to normal. Please pray that my blood counts maintain and I am able to do my chemo as scheduled and also that I avoid any infections. Last year at this time, my dad was in the ICU with sepsis and Acute Respiratory Distress Syndrome. This was brought on by him being on immune suppressing drugs. Needless to say, I've seen what can happen to immune suppressed people and it terrifies me but I know that my Dad is my guardian angel and keeping me strong!

I have been so blessed to have such strong and amazing women beside me in my fight. During my second chemo treatment I was surprised by two of my survivor girlfriends, Renee and Margo. They showed up looking beautiful and turned my chemo room into a party, complete with all of Renee's wigs from when she went through chemo.  I spent the morning trying on wigs and laughing with my friends who had fought cancer, and made it look like a fool. I am so blessed to have these examples of what strength and cancer ass kicking means. This past week, I was lucky to have my friend Amanda getting her treatment at the same time that I did. Amanda is 30 years old and was diagnosed just days after me. We've gone through everything together in this journey and I'd be lost if I didn't have someone who knew exactly what I was going through because they were going through it too, at the exact same time. When I made myself at home on my chemo bed last week, I looked across the hall and saw two young women talking , one of whom had her back to me. Turns out it was my friend Nichole, another survivor, and one whose advice to me was priceless early in my diagnosis. She was visiting her friend Hope who was from out of town but getting her Herceptin treatment at Hershey. Hope is a beautiful mother of 4 who was diagnosed with stage 4 breast cancer. She has had significant improvement in her cancer from her treatments but was recently diagnosed with a tumor in her brain which I have no doubt will be successfully treated too. We got to chat for a while and she was such a wealth of knowledge, positivity, and no pun intended, hope. Please pray for each of these women that I've mentioned...they have been sn inspiration to me and deserve nothing but health and happiness.

Thank you to everyone who has donated to my Making Strides Against Breast Cancer team!! I hope that a bunch of people will be able to walk with me on October 19th. I'm thinking of having a big fat pink party afterwards :-)

Friday, June 28, 2013

Taxol/Herceptin #1 down!

I'm sitting in Infusion Bed 20, which has a nice view of the gardens and we got to watch the rain. Today is really dragging though. Blood draw was at 11 am-that was delayed, oncologist appointment at 12 noon-that was delayed. Everything looked good to the doc, white count was an astonishing 25! We can definitely say that the Neulasta shot works! It better had for $5000. $5000 for a shot that i had 4 times...$20,000 in shots! I hear it costs more than the chemo drugs. Anyway, I asked the doc if I could eat sushi light of my high count and she said yes. After that appointment Eric and I went to The Hershey Grill over at the Hershey Lodge and I had an awesome coconut chicken salad! I have been shying away from salads because they say to if you are immune compromised. But now that I know that the Neulasta is working overtime, I think it's safe and it was worth it! How can I go a summer without salads, that's insane!

Weekly Taxol doesn't require the Neulasta shot afterwards so I will have to be more careful with my germ exposure now that I won't have anything helping me along. Taxol is supposed to be easier than AC, according to everyone. The things to look for are numbness and pain in fingers and toes. People can have trouble doing buttons, counting change, etc. I need to let them know if I experience any of those things. I may also have bone pain and muscle aches. And don't forget the risk of heart failure! I am praying that these next 12 weeks are uneventful!

There's a woman across the hall who is having a LAST DAY OF CHEMO PARTY!! I'm so excited for her. Everyone is wearing shirts with lime green ribbons so I looked online to see what cancer that was and it says Non-hodgkins lymphoma. I hope she is cancer free now and stays that way! I can't wait to hear the bell ring. Update: totally cried when she rang it.

Nothing new is going on with me.  I'm doing chemo, resting, playing with Harper, and gaining a stupid amount of weight. This is seriously like pregnancy, I'm literally gaining a pound each week. This whole chemo regime is 20 weeks so that could mean 20 pounds. I know that's a trivial complaint but I was really happy with myself after losing the baby weight and its just another reason why cancer is a dumb bitch who had to come here and *temporarily* mess up my life. I say temporarily because I've already let a bitch know that she's only allowed to screw with me in 2013 and after that I've got better things to do. Like growing my hair, living my life, kissing my baby, and doing anything I damn well please and everything I thought I could never do :-)

Saturday, June 22, 2013

The Cancer Cut

I just realized I never blogged about my big head shave! When you think chemotherapy, you think bald heads so no doubt, being without hair was one of the first thoughts I had when I heard the words "it came back positive for cancer." And I miss my hair, do I ever miss my hair. It took so long to get it so long, and I always begged Morgan to only trim those split ends, don't take any length. Then I find myself asking her to chop it mid neck before surgery and then comes the day where I invite her over...with her razor. So yes, if I find a long blonde hair in my car, I've been known to cry. If I stumble across (or go looking for) old pictures of myself, the tears form. But living with a hairless head hasn't been as traumatic as expected, shaving if off wasn't the cryfest I thought it would be.

It was May 17th, that we did it. I just had my second chemo and the hair was falling fast. Morgan came over after treatment, we sat on the deck, and the shaving began. Harper cried at first. I think she thought Morgan was hurting me with the razor. I got to experience some short cuts on the way to buzzed, my favorite being a Mohawk. How many women get to have a Mohawk in their lives? Cross that off the bucket list! I have to admit, I was pumped full of chemo drugs and had a nice big Ativan so that probably helped to make the situation less stressful. But like most big things that have happened since recieving my cancer diagnosis, I somehow view this event in a detached out-of-body-experience sort of way. I have to remove myself a bit from things, in order to not fully understand the magnitude of what's happening.

But here it is! The evolution of my hair! A month in, and bald is getting boring but its nice to whip off a wig, hat, or scarf when it's hot and feel the breeze! Thank you Morgan for doing what was probably one of the most emotionally uncomfortable appointments of your career, but I think we made it a fun, not sad, time!

The evolution of my hair.

How it always has been. I loved having long hair and I was happier as a blonde. This is right before I got it cut short, prior to my mastectomy:

 My new short hair cut! Very easy to handle after surgery. If you are having a bilateral mastectomy and have long hair, I really recommend an easy cut prior to surgery.
Then I decided to switch it up and go dark in the weeks before it fell out:

Then came the big shave...

Tuesday, June 18, 2013

Adios Red Devil!

On Friday June 14th I completed my final round of Adriamycin and Cytoxan! Round 4 was uneventful like I had hoped it would be. My oncologist and clinical study nurse marveled at how normal my blood work was, like a person who isn't even going through chemo. My oncologist told me that she feels like she isn't doing anything with me because the process has been so easy on me (except for all of my superficial complaints of weight gain, acne, and hair loss which when you're dealing with cancer, don't get much sympathy). After saying this, she shrugged her shoulders and turned to leave and I told her I hope I always make her want to shrug and leave because as a patient I'm a non event. Even though things have been "easy" for me so far,  what really matters is that all of our appointments post treatment for the next 30 years are the easy ones. I'd put up with any hardship right now to sail through the rest of these oncology appointments for the rest of my life.

So I get pats on the back and escorted over to the infusion room by my proud clinical study nurse. I'm settled into my chair and my chemo nurse comes over to review my stats and comments on how high my white blood counts are. About to pat myself on the back again, she said "I never see them this high". So I sneak a peak and turn to Dr. google and yep, they are high, like infection high. But I feel fine! I spend a good amount of time stressing about this when luckily my clinical study nurse returns. I ask her about it and she says "oh yeah, it's high" and I'm all like "what's wrong with me, am I dying???"  And she says "no, it just means that your Neulasta shot is working really well for you." Phew!!! Sometime during the day I sign up for the patient portal where I can view all my blood work results. Super bad idea for a hypochondriac, as now I have some other concerns that I need to bring up next treatment. When will I learn that ignorance is bliss?

The rest of the treatment went smooth and I felt ready to ring that bell to check off such a huge part of my chemo regimen. But alas, you can't ring until you're really done and I have 12 weekly Taxol/Herceptin combos in my future. I did witness a big chemo party across the hall as the lady finished her final infusion. Friends, flowers, happy nurses, bell ringing...will you come to my final chemo party??

Monday, June 3, 2013

75% of the way done with A/C!

Today is three days post my third Adriamycin/Cytoxan chemo! This one seems to be hitting me harder than the first two, but I have still been lucky enough to have no nausea. It really just makes me extremely exhausted and achy, which I think is from the Neulasta shot. 

I've had some rough days lately where I've let the dark thoughts creep in. I think due to the aches and pains that chemo brings, I've started to freak out that I have cancer in my bones and I have stage IV cancer. I never had any scans at my initial diagnosis except for a breast MRI and a chest x-ray and blood work prior to surgery. I never had a bone scan or PET scan to rule out distant metastases. Based on my stage of cancer and the limited lymph node involvement, it isn't common practice to scan unless there are symptoms that warrant them. And I don't want to ask for scans because they subject the body to unnecessary radiation and I don't think I could handle the "scanxiety" of waiting for the results. I just keep telling myself that feeling shitty is from my cancer treatment. It's hard to go from feeling normal while the cancer was in my body, to feeling so ill now that it's out. It's something I can't wrap my mind around yet. I need to keep reminding myself that the medicines are doing what they were created to do, get rid of every last cancer cell, and rejoice in the fact that my blood counts have been good and I have been able to get all of my treatments so far. The Neulasta shot that I get the day after every chemo treatment may cause a lot of bone pain, but it certainly does it's job. I caught a cold from Harper, my little petri dish, during round 2 and it was luckily just a regular cold. If you get a fever of 100.4 or above during chemotherapy it is considered a medical emergency and needs attention right away. I monitored myself through the whole illness and never got a fever, praise God.

So while I've been laying low and not doing anything too exciting, I do have something fun to report! On Memorial Day weekend, my in-laws hosted the 1st Annual River Games for the American Cancer Society. Cancer has touched our family in many ways, and luckily most of the people who have been touched are now survivors! I can't wait to celebrate my survivorship every year for the next 40 years of river games! There was a huge turn out of people and everyone had to pay $10 to play a day of backyard games: ladder golf, bocce ball, bean bags, and washer boards. There was plenty of delicious food and the weather was perfect.

Leading up to the games, I was hesitant to participate. I was so tired and beat down from chemo, being out in the sun didn't appeal to me, and after being laid up so much lately, I didn't know how I could muster up the energy to play a bunch of games I haven't been all that good at in the past. I asked Eric what team I was going to be on and he said I could be on his, but I sensed that he was hoping for a team of backyard game experts who were going to win. Our final team ended up being Eric, Ryan, Deb, and myself. And to my huge surprise, we won the tournament! We were up against so many people who regularly played these games, atheletic, college aged guys, etc. But our little team, the one with the cancer patient on it, won!! And I don't believe anyone was holding back just because I had a scarf on my head. This is something I am so proud of. Like I said, I wasn't even sure I was going to participate. I was going to sit inside, out of the sun, and rest my body. But I got out there and played all day and had a blast. Boy, was I sore for days afterwards but so was Eric so I think it had to do with being old, and not my cancer treatment.

I also just had a very successful Pampered Chef party in my neighborhood to raise money for my friend Nichole's Komen 3 Day Walk that she is doing this October. We raised $220 to go to her cause! My friend Katie is a Stella & Dot stylist and she did an online jewelry party for me, and the response has just blown my mind! The show did over $2200 in sales and raised over $340 towards my Making Strides Against Breast Cancer fundraising! I am SO THANKFUL to everyone who bought great cookware and jewelry in the name of a good cause! I hope you all love your things. This was SO FUN to be a part of and it took my mind off of obsessing about my cancer for a while and put my energy into thinking about fundraising will lead to research which will lead to better treatments and a cure so our kid's don't have to waste their time obsessing about their cancers. 

So while things have been pretty low key here, involving lots of laying around and feeling blah, some really fun things have happened in the last few weeks. I'm looking forward to banging out round 4 of A/C on June 14th! That will be the last time Adriamycin ever cruises through my veins, as there is a lifetime limit to the amount you can have in your system, but more so due to the fact that this cancer won't be back to visit. Next stop is weekly Taxol and Herceptin treatments which is a bit more of a time commitment but is hopefully easier on the side effect front.

 As always, THANK YOU so much for your prayers. We are doing really well, managing life through this bump in the road, and the only thing I ask is for prayers. They make more of a difference than any chemotherapy ever could. 

Wednesday, May 15, 2013

The CAN in Cancer

It has been almost 2 weeks since my first chemotherapy treatment and I'm finally getting the energy to update. I can't update this blog very well on my iPhone or iPad so writing an entry involves going up to the office and sitting in my uncomfortable desk chair at the desktop, and that just makes the whole thing feel too much like work.

I was extremely nervous for my first infusion but found it to be much easier, much less dramatic, and more routine feeling than I could have ever imagined. It helped that I had a fun nurse who was my age and made the whole experience very laid back. Since it was my first time, they were obviously out to impress me and gave me "infusion bed 23" which had a lovely view of the gardens. Accessing my port for the first time was a concern because it was still so tender from surgery the week before. Thankfully, I barely felt but a pin prick and they were able to quickly retrieve my blood samples that they needed for my participation in the clinical study that I'm doing. Then they hooked me up to some bags of goodies-saline and a bunch of IV anti-nausea medications. I was given 5 steroid pills to take to reduce any allergic reaction that I may have to the chemo meds and then my oncologist came to visit and ordered a 1mg Ativan which was also to help cut the nausea. Then my nurse covered herself in a whole bunch of protective coverings and sat next to me with a couple of syringes filled with kool aid colored fluid- Adriamycin, "the red devil". This chemotherapy is so toxic that it can burn through your skin and must be administered directly into a vein, hence all the protective gear she wore. It seems so wrong that someone is protecting themselves so much from something that is going directly into a port right next to my heart. She pushed the fluid slowly into my port over the course of 10 to 15 minutes. After that, they did an IV infusion of Cytoxan which took about 30 minutes and gives you the feeling of sinus pressure when you are being infused. I had read that you can sometimes taste strange things in your mouth during infusion so I sucked on hard candy and drank ice water, which is supposed to help reduce the risk of getting mouth sores. After that, they let me go. A rather boring report, but I'd rather this than any dramatics.

Eric and I went to lunch, I was like a drunk person thanks to the Ativan, and then I went home to sleep. The next couple of days weren't bad. I slept like a rock every night and needed naps every day due to the extreme exhaustion. I felt no nausea whatsoever. I did alternate Zofran and Compazine for the first few days because I didn't want to take any chances.

By last Thursday, when I went to get my wigs and attend Look Good Feel Better at the breast center, I was feeling pretty much back to my normal energy level. I really hope that round two brings no surprises and I can expect more of the same.

My clinical trial nurse called me yesterday to follow up on how I was doing. I told her that I only had vanity issues with treatment so far. The steroids they make you take for the day of infusion and the 3 days after make you insatiably hungry. My stomach growled all day. First thing in the morning, all through the day, while I was stuffing my face, when I went to bed and every time I woke up in the middle of the night. And since I was not having an nausea, eating was no problem. And I was one of those people who was blessed to not have any alteration of my taste buds and everything tasted freaking fabulous. Now I understand why people gain 25 pounds while undergoing breast cancer chemotherapy. Another problem with the steroids is that they can cause acne. I developed painful cystic acne on my chin, unlike anything I've ever had, even as a teenager. My face hurt to smile, even talk sometimes. I'd gladly take some nausea not to have to deal with this shit. So I'm going to talk to my oncologist about trying to reduce the amount of steroids this round to see if that helps. My face is finally starting to clear up in time to begin it all again on Friday. My hair is also starting to fall out, just a few strands here and there. Nothing at all like the amount of hair I lost on a daily basis when it was long and blonde, so I'm not in any danger of having any bald spots soon. But I'll probably get annoyed with finding hairs everywhere and shave it by the end of the weekend. I thought it was ready to do it, I really did. But as the time approaches, I keep hoping for one more day that it hangs on.

So that is my personal experience with chemotherapy round #1. Do-able, just like they said. If I can help anyone at all through this, I want women to know that if you ever are 1 in 8, you CAN do breast cancer. You CAN do a drastic body altering surgery. You CAN do chemo. Cancer was always my biggest fear, and chemo a terror. Now I have to face it and like all trials, God only gives you what you can handle. And I know that I can certainly handle cancer.

Wednesday, May 1, 2013

The Angels You Know

The one thing I've noticed so far from this cancer "situation" is how many angels there are among us and how people are put into your life's path for very specific reasons. I am so very thankful for all of my angels.

I have to first mention my guardian angel, my Dad. This is something I have only shared with a few people, until now. The day after my dad passed away I was riding in my husband's car on the way to my parents house. I heard my father's voice, very clearly in my head. He said "I love you, Jenna. Get yourself checked." My heart started to pound. What did he mean? Get what checked? What is wrong with me? It stuck in my head throughout the fall months. A friend mentioned at a holiday party that she had a dream I was pregnant. She said "well you were sick, so I assumed it was because you were pregnant." The heart starts to pound again, I know that I am sick, and not pregnant. But what is it? My immune system was changing, I was getting every cold that Harper got. They were turning into sinus infections, which I had never had before. Could this just be because I'm emotionally worn down from mourning my dad? I prayed one specific prayer to God throughout the months after my father's death, "Please Lord, help me understand why this had to happen." I truly believe my Dad had to leave here to alert me to the fact that something was wrong with me that needed to be treated. A friend, another one of my angels, said to me at his visitation service "Your dad can do more for you now than he ever could on Earth." I cling to this through this battle and know that he is always going to be my protector, even though he is gone.

My first thought when I was diagnosed was my mom. Why did she have to lose her husband of 40 years and now her only child has cancer? Please spare her this pain. She and Harper remain my biggest concern and motivation through this battle. I have to be here to take care of my mom as she gets older, and I have to be here because Harper needs her mom. I HAVE TO. There is no question, these people need me and they are the reason I fight. Harper has been my every reason for breathing since before she even existed and I have promised myself that I will be here for her until she is a grown woman. Thank you God for both of them. My mom has been a huge help with Harper, and Harper a huge help to my mom. And thanks be to God that Harper is too young to remember this. I look forward to the day that she and I are much older and I can tell her my story and make sure that she is diligent about breast cancer screening. I look forward to the day that we both do not have to worry, because there is a cure or a vaccine.

My husband is a true angel, my protector, and my rock. In our marriage we vowed in sickness and in health, without batting an eye at what that really means. I break down and cry to him that I'm so sorry that he has to go through this, if only he could have married a girl who was healthy, a girl without a mangled body, a soon to be bald head, a girl who will not resemble an 80 year old woman for half of the upcoming year. He tells me every single day how beautiful I am, mangled body and all. And the thing is, he really means it.  I think he's nuts, but I also think he is exactly the person I was meant to spend my life with.

My angel Mary, who always called me her angel. Five years ago Mary, my coworker, was diagnosed with breast cancer. She went through an successful surgery and had to do chemotherapy to insure that the cancer didn't return. A single mother, Mary worked as a pharmaceutical rep throughout her treatment. She is such a strong and inspirational woman.   In October of 2008 Mary and I went to a training class together. Mary was tired and out of breath and thought it must be the chemo and her asthma taking it's toll on her. I carried her bags for her and we had dinner together every night. No big deal, but it meant a lot to Mary, especially after she returned home to find out she was in heart failure from one of the cancer drugs. Praise be to God, that Mary's heart failure reversed itself once she stopped the medication. Almost five years to the day later, I was diagnosed with breast cancer, same kind and stage as Mary. Almost five years to the day later, I had a bilateral mastectomy, like Mary. And almost five years to the day later, I will start the same chemotherapy treatment that Mary did. She has been such a resource and comfort during this time that now she is my angel.

I would not have half of the strength I have without a group of breast cancer survivors to turn to for advice. Renee, Amanda, Nichole, Kristen, Rachel, Becky, Linda, Abby, the women in my survivor group, and the ladies on the Young Survival Coalition message boards, they have all helped me so much to not feel so alone in this. I am so sorry that all of these women have had to endure the caner battle but they are all such good examples of strength and survival to me.

An angel was even put in my path at the dentist office, my least favorite place on Earth. I will seriously be surprised if the chemotherapy infusion room at the hospital trumps the dentist office as my least favorite place once this is all said and done. I hadn't gone to the dentist in a few years, shameful I know, but I knew I needed to get a good cleaning prior to starting my treatment. I filled out the medical form and waited with dread for a young dental hygienist to scold me for not keeping up to date with my cleanings and to marvel at how young I was to have breast cancer, to feel sorry for me. My hygienist was an angel. Her mother was a stage 3 breast cancer survivor and she had obviously done her research and knew a lot about the disease. We had a very good conversation about cancer, treatment, and coming out on the other side. Never once did she act shocked at how young I was. It was such a good experience and I didn't have any cavities to boot.

Tomorrow I start my chemotherapy treatment. This is far more frightening than my surgery to me. It lasts a lot longer and has side effects that can last for the rest of your life. I'm asking for prayers that my body and heart endure this toxic poison, but that any remaining cancer does not. These next few months will not be easy, but I know they will be worth it. My biggest fear is that I'm going to look like a cancer patient, that people will look at me and feel sorry for me. I'm afraid that people will assume I'm dying of cancer, rather than living and preventing my cancer from returning. So please, please, don't pity me. I can do this, and I will do this, and all I need is encouragement and strength to get through it.

I am overwhelmed and alarmed at how many young women I have been put in touch with that have been diagnosed with cancer recently. A friend of mine knows 4 women, 35 and under, who have been diagnosed with breast cancer in the last few months. She went to her doctor to demand a mammogram and the young female doctor raised her hand and said that she too, was a breast cancer survivor. She said "the reason you know so many young women just diagnosed with breast cancer is not a coincidence, it is something that is very much happening." Please ladies, be sure to check yourself, thoroughly, on a monthly basis. I wish that I had.

My angel:

Thursday, April 25, 2013

The Devil You Know

Is the devil you know more of a threat than the devil you don't know?

I make it a point to know everything, and I mean everything, about everything that is happening to me. Let me be clear, only things that are happening to me do I know everything about. If you asked me about politics, world events, or who the contestants are on Dancing with the Stars, I'd give you a blank stare.  But if I'm going through it, I get a damn PhD.When I was trying to conceive for almost a year, I read everything I could about fertility and how to get pregnant. I could have been a fertility specialist. When I was pregnant, I knew everything there was to know about pregnancy. I read tons of books, spent hours on the internet, joined groups of expectant mothers and learned a lot from them as well. I could have been an OBGYN. This summer when I had a board meeting with the 20+ medical providers caring for my dad, the head of the ICU said "What is your professional background? You have so much medical knowledge." I told him I graduated with a degree in hypochondria at the school of WebMD. Needless to say, you can bet your ass that when I learned I had breast cancer, I did more research in two months than I ever did in 4 years of college. I am fairly certain that I have reached the end of the internet in regards to breast cancer. There are pros and cons to this. The pros are that I know what I'm dealing with. The cons are that I know what I'm dealing with. There are women in my survivor group that are in the early stages of their diagnosis and have said they prefer not to know the details of their cancer, their stats, their prognosis. Ignorance is complete bliss. I know this. But every time I try to ignore a burning question that's in my mind, it eats at me, it keeps me awake, and I have to do research.

So right now I feel like I know this cancer pretty well. This cancer that's probably been in my body, unknowingly, for 10 years. I've met with my surgeons, oncology, and radiation oncology. They all have had a meeting, called "The Tumor Board", which sounds creepy and disgusting to me, to discuss my case along with the pathologists. Here is what I know from all of these people:

1. My tumor margins are clear! There was originally some question about this but it looks like when the plastic surgeon finished up his job after putting the tissue expanders in, he took more skin, and that tested negative for any cancer. So the good news here is that I wouldn't have to go in for more surgery to get better margins around the incision site.

2. There were microscopic cells in my sentinel lymph node. This was the lymph node declared negative in the OR but I was prepared for this kind of thing, because when they get into more detailed testing, they often find small amounts of cancer cells. A micromet is considered to be between 0.2mm and 2.0 mm of cancer. My question for the tumor board was how big was the micromet exactly. The answer is 0.3mm. Had it come in under 0.2mm, it would be considered an isolated tumor cell which is considered node negative. Unfortunately micromets count as lymph node positive but there have been studies to show there isn't much of a difference in prognosis between having them and being lymph node negative. The other 4 lymph nodes removed were negative so there is no need to go in and remove more, the tumor board decided. So while I was hoping for completely negative nodes, this really isn't that bad.

3. My tumor really was 4.5 cm. What. The. Hell? Tests going into surgery (ultrasound and doctor's manipulation) estimated it at 2-2.5cm so this was one giant surprise. It sure didn't feel that large to me. This is the most depressing thing about my diagnosis so far. Larger tumors have a worse prognosis, especially when they are grade 3 (aggressive) like mine. Guilt comes into play here too. If it were that big, why didn't I find it sooner? I feel a lot of responsibility in regards to this matter. I thought I was familiar with my body but I guess I really wasn't.

4. There was no lymphovascular invasion identified in pathology. This is really good! It means that, in the blood and lymphatic channels in the tumor sample, they did not detect any cancer cells! There are other ways for cancer to spread throughout the body other than the lymph nodes and the blood stream is one of them. So this not being identified is a very good thing. It is incredibly shocking to me that a tumor of my size and grade did not have this kind of invasion and only had micromets to 1 lymph node. But I choose to trust pathology and am going to assume my tumor enjoyed being fat and happy in my breast and didn't want to move on elsewhere.

5. My stage is 2B. This is still considered to be early stage breast cancer. Because of my age, they will throw everything at me since I have a lot more years to live than the average 60 year old diagnosed with breast cancer.

There are all kinds of tools on the internet to predict survival rates at 5, 10, 15 years post diagnosis for breast cancer patients. Some are limited to health care professionals only. I'm not going to lie, according to the breast cancer predictor tool used by oncologists all over the country, I am known as a health care professional (in training of course, so the tale wasn't too tall). These tools vary with how detailed you can get about your specific case. The lovely bar graph my oncologist gave me about my 10 year survival made me want to throw up. I think that was part of her plan to get me to agree to all of the therapies they were recommending, so that the green (good) part of my bar graph would grow. A more detailed tool online called Cancer Math, gives me a more favorable prognosis after I do all the required therapies at 15 years after diagnosis (85% 15 year survival rate). I'm so focused on these statistics and numbers despite the fact that statistics was my least favorite class in college and I had to take it twice. Eric reminds me that my stats are either 100% or 0%, I can't be 85% alive. I either survive this cancer and live a normal life span or I don't. I am sure as hell going to make sure I do everything I can to fall into the 100% survival category.

That said, breast cancer has no cure. I will never be considered cured, especially since I have estrogen positive breast cancer which can recur up to decades later. Some doctors will tell a breast cancer patient that if they die of a stroke at age 85, then they were considered cured. This is the hardest piece of information that breast cancer patients have to live with and many suffer from post traumatic stress disorder because of it. The best that you hope for is to be considered NED...no evidence of disease. I hope and pray every day that these aggressive, poisonous treatments will keep me NED until I'm an old lady!

Today I received my Oncotype Dx score! A company called Genomic Health does an in depth analysis of 21 genes that make up your cancerous tumor and gives you a score. The score puts you into a category of low (no benefit from chemo), intermediate (unsure of chemo benefit), and high risk (your ass better do some chemo). The scores are from 1-100 but from everything I've read, people rarely score over the 40's or 50's. I was sitting in my appointment today with the research nurse, signing my body over to science, when I saw that my nurse from the breast center was calling. I knew it was about the Oncotype score so I was dying inside. Luckily, the breast center nurse checked the computer and sent a text to my other nurse letting her know my score. 23!! So I was thrilled because I was prepared for them to tell me that I'm the first person they've ever seen with a score of 82. So what this means is that 23 is in the low end of the intermediate category and they don't really know what my benefit will be from chemo. It does say that based on this score, I have an average distant recurrence rate of 15% (range between 11-18%) after taking 5 years of tamoxifen as my only therapy after surgery.  Because I'm in that gray "intermediate" zone they can't tell me how much more chemo will reduce this risk and it's up to me and my providers to make the decision. Well, we've already decided I'm getting the works, so I have hope that the chemo and radiation treatments will help bring this score down to below a 10% chance of distant recurrence. My tumor is a grade 3 which means it was rapidly dividing and chemo works best on rapidly dividing cells so I like to think chemo is going to kick some cancer butt! Other good news is that despite all of the aggressive factors about my cancer, the score came back on the lower side which ultimately means that I should get a good deal of benefit out of taking hormonal therapy. The standard is 5 years but my oncologist already told me she will give it to me for 10 years, as recent studies have shown additional benefit when taken longer. Plus there is always the option of ovarian suppression or removal to reduce my estrogen levels even more and then, since I will be considered post menopausal,  I can switch to an aromatase inhibitor which is even more effective than tamoxifen. So anyway, I'm feeling pretty good about my score, because it was based on MY cancer and tailored to me, not some application on the computer where I plug in a few numbers. I'm also now feeling good about my choices to do chemo and radiation before I start my hormone therapy so that I can be sure I'm giving it all that they've got.

Today I went for an EKG and an echocardiogram. Both were uneventful. I also got a CBC and comprehensive metabolic panel done and hopefully the results of all of these tests are normal so I am cleared for my first "infusion" next Thursday!

Tomorrow morning I go for my port placement. For some reason this scares me more than my bilateral mastectomy.  I guess because for some reason I looked at a bilateral mastectomy as a larger scale mole removal which was my only medical procedure reference to date. They were basically going to dig out those boobs and sew them back up. Easy peasy. I'm a little freaked out because tomorrow I will not be under general anesthesia and they will be placing this thing under my skin and jamming it into an artery. It just seems so invasive. However, they did say that I will be placed under conscious sedation, or "Twilight" anesthesia. I don't know what that means but I really hope Edward and Jacob are there. This will take place tomorrow around 8 am. Prayers are appreciated for a smooth procedure!! 

Oh and I learned how to put pictures in my blog which is like super advanced computer programming stuff in my mind so here are a few pictures of me wigging out this week.

An expensive "real hair" wig:
 I'm a ginger!:
 Old lady with attitude!