Sunday, January 9, 2011

Scan Results

I knew something was wrong when my doctor came in and noticed my haircut. She was thrilled with the cut, but seemed uncomfortable gushing. She wanted to set a tone for the meeting and my smiling face and desire to be young, happy, and looking forward to a new year was something she was about to crush.

"We have good news and bad news."

My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.

My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.

The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.

This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.

I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.

My doctor paused to let this news sink in before weighing in with her opinion.

"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"

I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.

But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?

Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?

Just like with a bad breakup  I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.

And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"

Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda. 

In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.

My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.

Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.

How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.

If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.

We have more dancing in the kitchen to do!
Regardless of cancer's intentions, I am adamant that I will continue to live the life I have made for myself. I will witness my best friend walking down the aisle. I will visit the beach with Mamma and Company this summer. I will write a book. Big Man and I are season ticket holders to our local theater and I am seeing every single show and having a pre-theater dinner to boot, even if I do feel a little 'funny.' Big Man and I want to take a trip to Wimbledon some summer soon, he's a tennis player whose never been to London, one of my favorite cities in the world that I can't wait to share with the man I love.

Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.

As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."

I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.

Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.

This cancer might scare me, but I am going to stand my ground.

The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.

I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.

God gave me the Big Man
My strength and fortitude, my gift of gab. Big Man's ability to make me laugh when I feel instead like crying, Big Man's kind eyes and even kinder heart.  Those are the gifts we symbolically received at our baptisms. Those very qualities that get us through cancer and help us to actually grow with it. We don't remember baptism, but our souls remember.

God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.

So, here we go, carrying on!

Sunday, January 2, 2011

Here's To New Beginnings

Happy New Year, kind readers!

I hope all of you are returning from vacations well rested and ready for 2011. I spent the last two weeks with the Big Man's Family. I completed several good books, enjoyed time by the fire, and kissed the Big Man at midnight.

And yet, it didn't feel like the holidays.

This was my first Christmas away from my family. While the Big Man and I dated, we managed to share Christmas and New Years. The Big Man's aunts and uncles live about an hour away from my family, so I managed to make appearances while still getting a good fix of my own family and enjoying my own childhood traditions. Now that we are married, we are learning to split holidays.

Christmas 2010 was wonderful in that I fully ensconced myself in the Big Man and his traditions. I learned so much about my husband around Aunt M and Uncle E's Christmas Tree.

In my family, we open one gift on Christmas Eve and the rest on Christmas morning. Also in my family, perhaps because we are such a huge Catholic family and each family consists of three, four, or even five children, we really don't exchange gifts with aunts and uncles and cousins. It would get enormous. We do only the immediate family gift exchange.

In contrast, in the Big Man family everyone is recognized with something thoughtful and small, which is really lovely, and makes the gift giving long and drawn out and so sweet. Also, in the Big Man family, all gifts are exchanged on Christmas Eve. There is something wonderful about this tradition.
I find something hopelessly romantic about opening gifts on Christmas Eve in front of a roaring fire, and Christmas Day was spent in simple conversation and a large meal, which was just the relaxation I needed after some busy months at work.

But, while I enjoyed the Big Man Christmas of 2010, this Christmas without my family made me feel like I was stranded on that "Island of Misfit Toys" from Rudolph the Red Nose Reindeer.

I was craving my childhood. I was missing my traditions. I vividly remember the excitement of all four of us waiting on the stairs on Christmas morning as my mother took a picture of all the kids. Mom always insisted on taking a picture every Christmas morning. We were prohibited from venturing downstairs into the toy-laden living room until "The Picture" was taken and until my Dad got his mug of iced tea (neither mom nor dad drank coffee, just iced tea). Dad was painfully slow, wrapping himself in his flannel LL Bean robe and slippers. Sometimes he even made us wait to go downstairs while he took a shower and shaved! I don't know why we didn't dare disobey. We had power in numbers. Four should have easily trumped two. But year after year, even when we were all in college or even graduated college, we all would wake up, stay in our pajamas an pile, in the same age-appropriate order, onto the oriental-carpeted winding staircase and smile for mom's camera.

The digital age actually slowed down the present-opening moment, rather than expediting the process. With a digital camera, Mom could see how miserable her picture was. She could see yawning, closed eyes, particularly bad bedhead. She kept insisting on a second, third or fourth take. And yet, that wait on the stairs was the best emotion of the holiday. More than the elation of the gift-opening and gift-giving, that moment of anticipation was the best part of Christmas morning.

At the same time as my homesickness, holiday 2010 I also had, for the very first time, a so, so very deep desire for my own children. I felt my biological clock ticking for the first time. I felt like I had been hit in the gut as I looked at Big Man holding his newest baby cousin, just seven months old. He was holding the child like a sack of potatoes. He looked petrified and thrilled all at the same time. He had a blissful look on his face and was laughing with his parents, who I could also see were watching this scene with their own desire for a first grandchild.  I watched Big Man enjoying his Christmas traditions, I missed my own Christmas traditions, and I wanted deeply to create Christmas traditions of our own for our own little ones. I wanted to see the joys of Santa and Christmas and the first big blizzard of the season through the eyes of our children.

I felt this Christmas like I am stranded between child and adult; stranded on the Island of Misfit Toys.

I don't yet feel fully comfortable in the adult world. Even though I have experienced so much that should make me an adult, even though I am an almost-thirty married woman. Perhaps because my world is a scary one, I still often feel like a child. I deeply and often need my mother and I mourn the loss of my childhood.

The name of this blog, "My Big Girl Pants," actually came out of this feeling. I feel like a child fighting a very adult fight. Whenever I would embark on a scary cancer chapter- be it surgery, chemo, or radiation, scans, results, and recurrences- my mom would hold my hand, stroke my hair, rub my back. I would say to her, "Mom, I can't do it. I don't want to go. I don't want to hurt. I don't want to do this anymore. Why can't this be over?" and she would tell me, "Bridget, you've got to be a big girl again today. You've been through so much, but you've always been my brave one. Did you put on your big girl pants this morning?" We would giggle. Mom would reassure me that she knew I could handle it. At the same time as enjoying the familiar feel of my mother's love, support, and reassurances, I also put on a brave face, planted my feet, stared death in the face, and said, "Bring It."

I am not a fully independent, married woman. A normal, independent, grown woman would look at her husband and say, "Let's make a baby!" The "woman" that I am has been told by her doctors, and realizes herself, that she needs to wait until she has two years of quiet. I need two years recurrence free to have a child or to consider adoption. Two years may seem like a flash in the pan, but I have not had, in my six years of fighting this disease, two straight years without a recurrence. If you ask me, two years is a goal of Everest proportions.

I feel like my life is not totally my own. It might also be exacerbated by the fact that I had scans on December 29th and get the results on January 5th. I'm used to scan-time, but its just too close to the holidays, the timing is so symbolic. I feel powerless to run my own life sometimes.

And so, this Christmas and New Year, instead of feeling content and full of familial joy and anticipation for the future, I mourned the loss of my childhood and I felt like I was living in a no-man's land. Both young and old, both healthy and sick, excited for the future and dubious of its possibilities.

But through all of this self-doubt, another feeling, a very powerful feeling peeped through. I was still very much in love.When Big Man and I returned to our hotel room from Aunt M and Uncle E's, I couldn't help but be swept up in his warmth and joy and hopes for the future. We stayed up way too late talking about our plans for babies and houses and Christmas trees. We talked about exotic warm weather vacations far away from the threat of a Nor'easters. We talked about visions of me in an apron holding a beautiful roast turkey hosting our very own holiday rather than packing up and sitting in the airport. When I look in his eyes, I see the future and I feel so sure of all of it.

As Christmas wound down, I realized I needed, for Big Man's sake, to face the New Year with his same anticipation and hope.

How could I turn my fears upside down? How could I again find the power to face my fear, plant my feet and say, "Bring It!"? I needed confidence. I was far away from my mom and I needed the confidence that she so often brings me.

I lost my hair six years ago while in my first round of chemo. That dreaded pink chemo cocktail took every last whisp of hair and also took my eyelashes and eyebrows. The hair grew back and I was thrilled to find that the short 'do suited me. I am a small person and my tiny little head looked good with short hair. The short "pixie" cut actually brought out my large blue eyes. People commented. My proudest cancer moment came in the airport after picking up the Big Man who was visiting for the weekend when a woman at the baggage claim said she loved my hair and asked for my hairdresser's name. I didn't know what to say. I didn't have a hairdresser. I hadn't had a hairdresser for the past six months of baldness. I gave her the name of my wig-lady.

For the past five years, even though short hair suits me, I have kept my hair long. I have never, ever considered cutting it any shorter than my chin. That would bring back too many memories of baldness. That would bring back that painful memory of sitting in the back room of a salon watching my shocked, pale, tired face in the mirror as a strange woman shaved my head.

So, to celebrate 2011, I stared my fears and memories in the face and I cut my hair. My hair that proudly fell to my mid-chest, the hair that brushed up against my fake breasts. My hair that had some very hip Kim Kardashian like bangs. That hair that I spent hours blow drying, straightening and hairspraying. I cut it. I cut it all.
New Year's Eve 2011

I feel like an adult, a grown-up woman. I love my hair. I can air dry it and then put in some product. I don't look like a cancer patient as I had feared. I look like a hip, newly married woman who is choosing not to have kids yet because she's busy taking over the world.

So that's how I'm starting 2011. I'm starting fresh. Even though I am scared to death because I had scans on December 29th and get the results on January 5th, even though I feel like cancer is keeping me from living the life I want sometimes, I am looking forward to the future.

I can't wait for 2011! I hope that all of you feel the same.

Here's a toast to new hair and to new beginnings!