Negotiating With The Big Man

Several times along the course of my breast cancer journey, I've had to plead, cry, and negotiate with The Big Man, and this time when I mention The Big Man, I'm talking about God. I'm happy to say that, while there have been times when His answers to my prayers have been difficult to understand, I can say confidently that He has heard and granted my wishes time and time again. I realize that making it seven years with Stage IV Her2+ breast cancer is a miracle in itself. My presence here today is living, breathing proof of God's answered prayers. And yet, even though The Big Man Upstairs continues to answer my prayers, I always want more.

This week, I received tumor marker test results and found that my tumor markers are rising, again.

I was never a patient who hung her hat on tumor markers. I wanted always to look at the bigger picture and didn't want a weekly or monthly reminder of my battle. Instead, for six years, I was happy with making a plan and sticking to it for three months at a time. I was happy that every three months I could steel myself for the unknown. I lived every three months happily and trying to maintain as much normalcy as I could. Then, once every three months, four times a year, I would hold hands with My Big Man, ask Mom to fly into town for support. Together we could look cancer square in the face, get my scan results, and come up with a new gameplan.

This year, though, my world turned upside down in October. My doctor told me the cancer had control of my body, and what was once a cancer contained in my liver had blossomed into spots in my lungs, bones, and throughout my lymph nodes. I started contemplating death, and not death someday, but death soon. I started contemplating leaving my job that gave me so much strength, support, camraderie, a sense of normalcy, a sense of accomplishment, and a sense of purpose. I changed all of my passwords and wrote them down for easy access. I finally sorted through our file folders and organized paperwork, threw out seven year old documents and bills, and cleaned house in case Big Man had to take over the running of the household. I actually wrote down and printed out and put in a folder labeled "Legal Documents" instructions in the case of my death. I imagined my funeral. I read Bible passages. I listened to hymns. I cried, but I also felt a sense of control and peace.

And then my tumor markers started falling. The Taxol and Herceptin combo started working, and week after week I started taking notice of my tumor markers for the first time. By December, my tumor markers fell from 965 to only 75. I started rooting for my tumor markers. I started getting hope and inspiration from those test results. I realize now I also started hanging my hopes on that test result. Now that my tumor markers are rising, I'm not finding hope in my day-to-day accomplishments as much as before. Rather than making my three month leases on life count, I'm getting dejected with every passing blood test. The cancer is suddenly taking over my mind and my mood.

My whole family, also, has started asking, "Did you get results yet? What are your markers doing? What does this mean?" My  family shares my pain when the results are poor. And now, without intending that, we are sad and defeated by the cancer on a weekly and monthly basis rather than every three months. Cancer is controlling more of our lives.

The doctors do not react to every test result. We do not make major treatment decisions based on a handful of bad blood tests because it takes a long time for trends on a cellular and blood level to actually translate into changes at the tumor level. It takes a long time for tumor markers to add up to actual, measurable tumor growth. So we were, in essence, getting very upset and worked up about results that were not going to impact my day-to-day treatment decisions in the slightest. These tumor markers were fabulous tools for encouragement when things were going our way, but now they are simply a hindrance.

This last week, my tumor markers rose to 312. I am upset. I am scared. My mind is wandering to sad, dark places. My Big Man and I cuddled together in silence after the results came back. Until Big Man broke that silence by stroking my bald head, looking down at my face resting on his chest and saying "You can't go anywhere. It's as simple as that. You aren't allowed to leave me. I can't handle that. So there."

And I decided to make the same "So there" statement. I will not allow these tumor marker tests to rule my life. I will not speak of them again on this blog. Instead, I will only get upset and nervous and scared every three months at scan time. Scans are coming up again on April 11th, so I suppose this is an easy promise to make for now. We will see in April and May if I can regain control and perspective. Can I go back to focusing on the bigger picture? I have made three month long goals for myself and my family before. I am going to make these same sort of goals now.

In October, I had a negotiation with God. I asked, and prayed, and begged that he please let me live to see my baby niece born.

My sister-in-law is due on April 6th. God has granted me that wish. God has answered my prayers. I am sure that on April 6th, as I watch a new, perfect life emerge before my eyes and as I become an Aunt for the first time, I'm sure I will have another negotiation with God. I'm sure I will pray that he let me see this beautiful child grow up. I know I will pray that He gives me the chance to share in her life. I want her to know me. I want her to love me. I want to hear her say my name. I want to see My Big Man hold her. I want to see my Big Man fall in love with her. I want to see my Big Man turn to me with a smile and imagine me as the Mommy.

Instead, I should simply sit back and enjoy that one day.  I have to take a deep breath and remember my favorite excerpt from Matthew 6:

          “That is why I am telling you not to worry about your life

           And what you are to eat, nor about your body and what you are to wear.
           Surely life is more than food, and the body more than clothing!
           …Can any of you, however much you worry, add one single cubit to your span of life?
           And why worry about clothing?  
          Think of the flowers growing in the fields;  they never have to work or spin;
           Yet I assure you that not even Solomon in all his royal robes  was clothed like one of these.
           Now if that is how God clothes the wild flowers growing in the field…
           Will he not much more look after you, you who have so little faith?

           So do not worry;

           Do not say, “What are we to eat? What are we to drink? What are we to wear?”
           Your heavenly Father knows you need them all.
           Set your hearts on his kingdom first…
           So do not worry about tomorrow: tomorrow will take care of itself.  
           Each day has enough trouble of its own. “

My Blog of Thanks Giving

I am in the hospital today. I am hooked up to an IV right now getting an infusion of my TDM1. I've been here for 3 hours, but I am hoping I can wrap it up within the hour so I don't have to rush to the airport. That's right, I am truly the greatest multi-tasker in America. I am writing a blog post, while getting my chemo, before heading to the airport for Thanksgiving. Take that Martha Stewart!

After seven months, I now have this TDM1 down to a science. I can set my watch to the moment the side effects kick in. I usually can steal about two hours post-infusion. Once I hit 2 hours, my eyes start to feel heavy. My head hurts. Every little movement takes a little more effort. I'll need a bed. The flight to Baltimore is an hour and a half, so I should be safe in my mom's arms by the time the side effects get too unbearable...if my flight is on time.

While sitting at chemo for several hours, I've found a lot of time to reflect on my year and to reflect on my many blessings. This Thanksgiving, while I have so much to be thankful for, most especially my TDM1 miracle, I am instead choosing to focus on just one. I am thankful this year for my ability to savor the moment.

Last Thanksgiving, I was unable to savor anything. Last Thanksgiving, I was just 5 days post double mastectomy. I had left the hospital just 2 days before. I could barely lift my head off the pillow and was pale, tired, and in pain. My lovely in-laws came to the house with a complete Thanksgiving meal that they brought all the way to Boston from Syracuse, NY. They didn't want me to "miss" Thanksgiving. But last year, even though I had turkey, I missed Thanksgiving. Because at the end of the day, this holiday is not about turkey, stuffing, or cranberry sauce. This holiday is about taking a collective deep breath, reflecting on all of our blessings, and enjoying family and friends. I was not in any shape last year to enjoy myself or my family.

Norman Rockwell got it right!

Thank you, God, for giving me another Thanksgiving. Thank you, God, for giving me this opportunity to savor my life, my friends, and my family. Thank you, God, for allowing me this second chance, I promise that this does not go unnoticed. This year, I will take the time to savor the moment. As one of my favorite theologians, Father James Martin, SJ, said when discussing Thanksgiving:

"Savoring is an antidote to our increasingly rushed lives. We live in a busy world, with an emphasis on speed, efficiency and productivity, and we often find ourselves always moving on to the next task at hand. Life becomes an endless series of tasks, and our day becomes a compendium of to-do lists. We become "human doings" instead of "human beings." Savoring slows us down....(In prayer) we pause to enjoy what has happened. It's a deepening of our gratitude to God, and reveals the hidden joys of our days."

 Thanksgiving used to be a blip on my radar, but now that I am older and oh-so-much wiser, Thanksgiving is my favorite holiday of the year. I know there are no gifts. I know there seems to be no "purpose" beyond just taking a day off, but life isn't about gifts and life shouldn't always be "for" something.  I think we all need a breather and some real quality time more than any gift. We all need to savor the "hidden joys of our days." Ideally we would give thanks every day, but thank goodness we do it at least once a year.

There are so many little things for which we should give thanks, and these little joys are often overshadowed by the big stuff.  How beautiful is a a baby's smile as they wake from a nap? Or the reflection of a morning sunrise on the skyscrapers downtown? How did we manage to miss the joy that can be found in the simple, but beautiful habit of a kiss goodnight? Give thanks for the smile from a stranger as they hold the door. This Thanksgiving, try to be thankful for the little things that are so abundant and so often overlooked.

I am thankful that I am not on painkillers. I am thankful that this year I am not overwhelmed emotionally with fear and anxiety. This Thanksgiving, I can appreciate the smell of a fire in the fireplace, the sights, sounds and smells of a family gathering. I can recall childhood memories without any tinge of sadness, only fondness. I can enjoy the company of new family members, like my sister-in-law and her family, and look forward to making new holiday traditions as our families grow.

Last year I was crushed by all the sorrow and anxiety that a cancer recurrence brings. This year I am thankful for freedom from that.

I hope that all of you are blessed enough to enjoy the luxury of a moment of peace. Please take advantage of that moment and appreciate it's glory. The rush of Christmas will be here all too soon and we need to ready our souls for it!

Milestones

TGIF! Today is a huge day for me. Well, actually, yesterday was a huge day for me, but the Big Man and I plan on celebrating tonight. He is taking me to see "The Great American Trailer Park Musical." I don't know what to expect, but whatever it is it sounds fabulous!

No, it is not my birthday. No, it is not my wedding anniversary. No, we did not get that puppy I want, although Big Man, if you're reading this, if you come home with a puppy tonight then you will automatically win every argument for the next five years!

Today is my "Cancer-versary". It has officially been five years since my breast cancer diagnosis! I am entering my sixth year of survivorship today! I am now officially on the winning side of that 20% statistic that I think about every second of every day. My goodness, gracious how far I have come in the past five years! I get a little bit shaky just thinking about where I was on June 3, 2005.

I was standing in line at Starbucks. I had graduated two weeks before.  I was bright eyed and bushy tailed. The greatest worry that I had was what to wear to my first day of work. I had just spent some time shopping on Newbury Street for cute shirts to go under my boring black suit jacket. I needed a coffee because I had been sadly unsuccessful.

Everything I tried on suddenly seemed so "juvenile". I suddenly felt the urge to shop at Anne Taylor or Talbots. I bought my first ever pair of shoes from Naturalizer. In college, I had never left hip, cafe-and boutique-filled Newbury Street, but post-college, I had the urge to drive out to visit a large suburban mall.

I hoped that ordering a skinny, double-shot caramel macchiato might wake me up from this real world induced fashion coma.

That is a long winded way of saying, I was a totally typical college student. I did not have a care in the world, but if you asked me I am sure I would say that I was suffering some sort of major crisis.

My phone rang. It was my mother.

Momma asked me where I was. I told her Starbucks. Without taking a breath, I started into my big thoughts on the joys of sensible Naturalizer pumps. She clearly wasn't listening. Whatever she had on her mind she was going to say and there was no stopping her.  She interrupted my Naturalizer monologue. She never told me, "Honey, you should probably sit down" or "Why don't you call me back when you get home", or even, "Go into the bathroom where it is quiet and you can talk privately."

No, no. Instead, while standing in line at Starbucks behind a young mother with a MacLaren stroller and several Burberry and Petit Bateau shopping bags, my mother told me I had breast cancer.

I hung up on her saying, "Listen, I just can't deal with this right now."

Now, five years later, I can deal with absolutely anything and everything.

This time five years ago, I was in my brand new Volkswagen Jetta, a graduation gift from my proud parents, driving eight hours home from Boston to Baltimore with my mom. I had, for some reason, packed only three outfits and a bathing suit. Who knows why I thought I needed a bathing suit for chemo. I had quit my first job before I had even started and instead of living with my best girlfriends, I was in the process of moving back in with my parents.

On the long, Batan Death March that was my ride to chemo, I was having a conversation with my oldest brother about why I should or should not tell my college friends about my diagnosis.

"Bridge, this whole cancer thing is going to be really quick. Just get this chapter behind you, and you'll want to go back to normal. If you tell everyone, you'll never be able to go back to normal. Bump in the road, Bridge, bump in the road."

"Dude, Bro, I'm going to lose my hair. How am I going to explain that one?"

Silence.

And just like that, my life was forever changed. Now, I tell my story to anyone who will listen.

Five years ago, my boyfriend of six months came to my parent's home for only the second time. He held my hand as my mother's hairdresser shaved my head.  Here I am sporting my new look next to my dubious younger brother.

Five years ago, the GI Jane look worked for a bit, but then my hair started actually falling out. It came out in big chunks. The Big Man actually left a hand print on the back of my head after watching a movie at one point. The Big Man was both mortified and feeling incredibly guilty. So I quickly invested in an amazing wig.

Looks like I got the soccer mom look I had been hoping for on Newbury Street!

Now, five years later, that brave young man who held my hand as I shaved my head is now my husband and my hair is long and fabulous.

The past five years have been a long and painful few years. Nothing has gone as I expected, but the greatest lessons of my young but eventful life haven't been learned in the college classroom; they were learned in the hospital room. So here is what I have learned up to this point. These thoughts are the legacy from my first five years:

Your parents are your best friends. Contrary to what many of you might imagine, they will not be here forever and their presence in your lives is a gift. Let go of any petty drama or family arguments. If caring for your ailing mother is grating on your last nerve, when you have the knee jerk reaction to speak sharply or get exasperated, instead take a deep breath and give a hug instead. Your parents are the only people on this earth who know you better than you know yourselves.

The best thing that ever happened me was moving in with my parents after graduation. I did not just live upstairs. I cooked dinner with them every night, my dad and I went on dates, I got to know my mom as a friend and not a mother. I learned about their first jobs and their graduate school experiences. I learned to turn to them for good and sound advice, and to actually listen to their advice rather than thinking I know it all. We became the best friends we always should have been for the first 21 years of my life because we found ourselves in the unhappy position where we were all clinging to each other like survivors to a life raft. Please, do me a favor and become best friends with your parents simply because you are lucky enough to realize how precious they are!

I’ve also learned to stop spending my time trying to plan my whole life and setting certain goals to attain. Do not measure yourself based on the accomplishments of your peers. Life is too short to wish it away.  Reflect on all that you have accomplished as opposed to planning for the next accomplishment. Focus on tonight rather than planning for tomorrow. Turn off your phone, computer, tv.....Instead, let go and enjoy where you are in this very special moment. I know I will really enjoy "The Great American Trailer Park Musical" this evening. What are you doing tonight? Whatever it is, put your heart and soul into it!

 When I visited a doctor and he ran his hands through his hair and said, “I just don’t know what to do with you.” At that moment, I was forced to take stock of my life.

I task all of you to spend some time today, in my honor, taking stock of your lives. Don’t take stock of your career goals or material possessions. Take a look at your character and at your relationships.  Take a look at the friends around you, because at the end of your lives, your relationships are what endure even after you are gone. Your relationships and your character are what matter and they are all that matter.

I have spent the past five years intensely focused on the relationships with the people I love. It has been the best five years of my life. I am looking forward to the next five.