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!

23 comments:

CivicUS Trial Blog said...
This comment has been removed by the author.
Jay Furr said...

Bridget, we're rooting for you, for what it's worth. I'm incredibly sorry that you didn't get better news but I'm glad that you have the inner strength and spirit that you so obviously possess. I am 100% certain that it helps.

MelADramatic Mommy said...

I followed a link from one of my Twitter friends. You're in my thoughts and prayers.

Peggy said...

Keith and I are stading ground right behind you. We love you!

Nancy and David Lumb said...

Bridget - we love you. When you get scared or sad, just remember that you have a crowd of people routing for you!! We will keep you in our prayers!

Nancy and David Lumb said...

Bridget - we love you. When you get scared or sad, just remember that you have a crowd of people rooting for you!! We will keep you in our prayers!

pinkim said...

Hi Bridget,
I am sure you don't remember meeting me I spoke just prior to you at the 3 day and was thrilled to meet you. I volunteer at Komen MD with Robin...I follow your blog...I cannot express how sorry I am to hear that you got sad news today and that you have to switch meds yet again...I was talking about your story just yesterday...I was on an overnight rip to Dallas for a Komen grant review session...

You are in my thoughts! I admire you spirit and you and your husbands ability to lead your lives...
Kim

Bridget said...

Kim, of course I remember you! Your speech about the work of the Komen affiliate was so important at the DC 3-Day. Thank you for continuing to follow my story, but more importantly, thank you for sharing my story with the Dallas team. My Komen friends need to know just how their work affects lives today. We don't have a cure, but I'm still alive and that must mean something! Please keep fighting the good fight for me

Anonymous said...

Hi Bridget, I have been following your post through a FB friend. I left a comment last week and I want to leave another very important one right now. When my son had that malignant brain tumor and was given 6 months to live, my mother-in-law did a LOT of research and she found this Doctor in Texas. He has cured many many many people that NO hope at all to live. He has been on all the "big" TV news shows, but the FDA will not approve him because they say: He will put a LOT of Doctors out of business. I call the FDA Murderers!!!! It may be a longshot, but I want you to look at this website and see for yourself. please go to burzynskiclinic.com. And I will be praying for you!!

Bridget said...

Thanks, Anonymous, for this clinic info. Luckily, I really, really love my doctor (I wish every patient could say the same thing) so I'm not looking to switch. I appreciate you sharing that though! I have met with dozens of doctors all over the country, but after several years of searching, I have found my team that I trust. I'm done looking!

Also, because I have to serve as a bit of a moderator here, no offense intended, but I disagree with the FDA killer idea. That is the opinion of the poster and not an opinion of mine. Let us keep in mind that the FDA approved Herceptin which kept me cancer free for a glorious three years and allowed me to get engaged! The FDA also recently approved this Tykerb cocktail that I am hoping is The One for me. No human- construct is perfect because we humans are beautifully flawed, but I'm happy with what I've been given and the FDA deserves my thanks for those three years recurrence free.

Also, in my moderator voice, I also must say, as someone who has worked in the cancer world for many years, I recommend patients, especially very ill patients, stay away from any organization that promises a "cure." We can not cure cancer. We do not have a cure. If you learn nothing from story, you must learn how difficult cancer is to treat. I take great hope in the stories I hear of patients who have survived in spite of the odds, but those are anecdotes, not proof of a cure.

Thanks again for reading and for sharing, Anonymous, and everyone!

Liliana Holtzman said...

Sweet girl, I send you all good wishes of this world!

Laurie said...

Hi Bridget,
You don't know me - I live outside Seattle and got your blog from a friend of a friend, etc. I've been following your blog and with the way you write, I feel I know you. After reading your recent post and sobbing at your news, I felt I needed to just write you and send a virtual hug. So HUGS!!! I had triple negative breast cancer almost 5 years ago and am lucky to be cancer free. My mother is a 45 year survivor who's cancer had spread and she was given about 9 months to live back in 1965 - she is now almost 87 and has never had a recurrence. The doctors continue to be amazed at her survival. We are BRCA1+ with a huge family history of breast cancer and so far my Mom and I are the only survivors of this awful disease. When I was going through treatment I would ask her what the secret was, hoping and praying I could be like her. Of course she doesn't know. I wish I knew to share with you. What I do know is there are miracles in this world and my Mom is one of them. I hope with all my heart that you are one, too!
Laurie

Kathryn said...

Bridget - My sister and I both walked the 3-Day in DC this year and both follow your blog. We pray that Xeloda/Tykerb will be "the one". Our mom was on Xeloda for more than a year and we didn't even know she was on it (or that her cancer had returned for that matter). I think that says a lot about how mild its side effects can be for some patients. She was our normal, active, wonderful mother with no signs of the cancer battle Xeloda was waging. I hope this means you will be normal, active, wonderful Bridget with no signs of the cancer battle Xeloda will be waging for many, many months!

Teri said...

Sending you love from Seattle, sweet Bridget.

Bridget said...

Laurie,

I am accepting those virtual hugs with arms wide open. Thank you so much for reading, for crying with me,and for sending that love my way. A 5 year survivor of triple negative breast cancer? You are one tough broad, just like your beautiful mother!

Kathryn, Thank you so much for this information. For more, information isn't power, information is comfort! I have shared your info with The Big Man and we are so hopeful because of it. Thank you!

Avis said...

Briget,as a fellow bc mets patient, I fully understand your situation. We are always in limbo...always waiting for the results from that recent scan and hoping that the report shows our disease is stable or NED (no evidence of disease). I,too, recently switched from infusions to chemo in daily pill form after increasing tumor markers and scans that showed spread of my bone mets. But, just like you, I enjoy everyday to the fullest, and revel in how "normal" a life I am able to live. In 2009, I partnered with seven other women to co-found a non-profit that supports women and men with bc mets and raises funds specifically for research for our disease. We are called METAvivor Research and Support, Inc., and you can find info on us at www.metavivor.org

Beth said...

Bridget -

I have not been able to shake thoughts of you since reading your last post...in that helpless kind of way when you care about someone and know that they are having difficult moments. I just finished reading Jenne's farewell letter (I'm a 3Day girl as well) and laughed through my teary eyes...thinking how much I loved her lawn mower story, and remembering how much hope there can be. It reminded me of the resonance and strength you have shared time and again, and you will continue to find your spark...time and again. Love and hope to you.

Jan said...

Hi Bridget,
I read Laurie's post and had to share that I am also a survivor of triple negative breast cancer. It's been 6 years now since my first cancer surgery and this March will be 6 years since chemo.
I hope it gives you some comfort to hear from survivors, who know firsthand some of the roller coast of emotions you're going through.
Saying a prayer for you...
Jan

Anonymous said...

Bridget, I just learned of you though a "VN" friend named Pink, and believe me she and others out there are doing anything within reason to see you get all that's out there for your cancer. I have an aunt who is a surviver 7 years I'm happy for her. I will be thinking of you, and hopeing for the best...TRACK

Anonymous said...

Bridget, I am an 8 1/2 cancer survivor and so admire your amazing outlook at such a young age. I spent 2 years fighting this dreadful disease and didn't possess anywhere near the grace and fortitude that you display. I spent most of the two years crying in my closet or my car, anywhere in private, to spare the ones that I loved the reality that the "strong one" was falling apart. I write because during my battle it always made me feel a little better to hear "happy endings". You are a true "warrior" and never forget the war CAN BE WON. I'm livig proof. Keeping you and the Big Man in my thoughts and prayers.
As my oncologist said (it still sounds weird that I actually had an oncologist and a radiation onocologist, etc...) " I have seen many people fight and not win but never have I seen anyone not fight and win". You are quite a figher young lady!

Much love.

melanie goes pink said...

I'm so sorry that you didn't continue to receive good new and have to move on and switch drugs. I pray with everyone else hoping your new cocktail is "The One." More cyber hugs sent your way!

Charmine said...

Oh wow, I'm thinking I needed to find your blog today! Don't worry about the Zeloda. I got 3 rounds in me before it quit working. I really don't recall any noticeable side effects, and I wish the same for you. Hold Big man close, you are sboth so very blessed to have each other!

Anonymous said...

please consider visiting drday.com and God bless you!