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

Happy Thanksgiving, readers!

I hope you are all snuggled up on the couch, catching up on sleep, reading a book, or enjoying a football game! For me, Thanksgiving took on a whole new importance after my cancer diagnosis. Prior to cancer, Thanksgiving for me was simply the dress rehearsal for Christmas. Now, after cancer, Thanksgiving is my favorite holiday. I so appreciate this one day a year when I can sit back, surrounded by my loved ones who know me and my struggle best, and count my proverbial blessings.

Every year, my family goes around the dinner table and proposes a toast to his or her greatest blessing. Prior to cancer I always came up with something, but it was never anything that truly stirred my heart. Post-cancer, I was giving thanks for just about everything- from my health care insurance, to my co-workers who covered for me on sick days, to the plumber who cleaned a whole head's worth of my hair out of our shower drain. Everything, even the most inconsequential, took on a new importance post-cancer.

This year, for a moment back in October, that happiness, that ability to give thanks and mean it, even for the small stuff, the ability to count my blessings was taken away from me. I had trouble finding things to be thankful for when I was facing constant, aching back pain from my bone metastasis. It was hard to be thankful when my hair was falling out in huge clumps every time I took a shower. It was hard to be thankful when the Taxol started giving me daily nosebleeds. It was really hard to be thankful when, not only was I self conscious about my newly sheared head, but I also started breaking out in a hot red rash all over my face and bald head from the steroids. It was hard to be thankful when I missed a best college friend's wedding because I didn't have enough energy after chemo to make the cross country trip. But most of all, it was hard to give thanks for even the most constant blessing - my family and friends - when I looked around the room, remembered the terrible news my doctor had given, and imagined future Thanksgivings without me at the table.

I was running the risk of becoming jaded. I didn't like jaded Bridget. Jaded Bridget was not in line with my sunny personality. Had cancer finally won on every front? Had it taken away not only my health, my good looks, my physical ability to provide for my family, but even my happy personality?

I didn't know how to deal with this. I was having nightmares about visiting the pearly gates and being denied admission - very vivid dreams where I would be grilled by a scary looking judge about every piece of nasty gossip I had spread and every lie I'd ever told. I was petrified by and obsessed with the thought that we might have a vengeful God on our hands.

One Sunday afternoon, Big Man came home from a weekend away with friends. He asked me what I had done all weekend long in his absence and I did what so many wives would do. I lied. Did I tell him I sat on the couch all weekend and read that trashy chick lit novel I'd been meaning to get to since summer? Did I tell him I let the dog sleep in bed with me because I wanted some company while I ate popcorn and watched "Princess Bride" for the 50th time? No, I told Big Man that I spent the weekend at the grocery store, walking the dog, and "running errands" because Big Man wouldn't even know what errands exactly needed running. That beautiful fall Sunday evening, I fell asleep in our crisply cold room and woke up in a sweat at 4am from that same nightmare. Vengeful God had condemned me to an eternity in hell for lying to my husband about the dog sleeping and the book reading.

October was a tough month for me.

But then, without warning, hope and joy started peeking through in the most unexpected of places when I wasn't even looking for it.  Hope found me in the bathroom when I lost my hair.

The first time I went through chemo and lost my hair six years ago, I visited a fancy salon to have my head shaved. They took me into a private back room, and some woman I've never seen before or since shaved me in about 5 minutes. This time around, I was much more matter-of-fact about the whole hair loss. I was prepared. I had done this before.

Me in my wig the night after Big Man shaved my hair.
That's one good-looking wig & he's one good-looking hubby!

One morning, I woke up and I couldn't take the itching anymore. (Chemo kills your hair follicles so they itch and the hair shaving actually comes as a bit of a welcome relief.) I woke up Big Man. Without even a word of protest, even though it was only 7am on a Saturday morning, Big Man got up. He and I walked hand-in-hand to Walgreen's. We purchased a pair of clippers, I stuck my head into the sink, and my husband shaved off all my hair. He cried a bit, which made me cry. I thanked him profusely, which made him cry.  But in the end, a moment I had dreaded actually gave me hope. I will cherish that memory forever. After seven years together, shaving my head in the bathroom sink was certainly our most intimate moment. We were a scared young couple looking ahead toward an uncertain future, but at least we were doing it together. He had my back. He would take care of me. "In sickness and in health" we had told each other when I still had hair and boobs. Big Man proved he meant those vows when he shaved my head last month, slowly, carefully, and whispering soft words of comfort when I cried.

I also found hope that I was afraid to share with all of you. I'm still so afraid to share this news with you because I'm afraid next week the tide will turn. My heart and hope might be crushed again, and only God knows when. When this good news changes, I will be forced to explain the change to all of you, and then all of you will be crushed right along with me. I'm also so afraid that, by sharing my hope here with all of you, I might be jinxing it! I always prided myself on being factual, logical, grounded.... now I fear cancer is making me all religious and superstitious!

But I can't keep the news to myself any longer. If I jinx myself, so be it!

Taxol gave me hope. The most unexpected drug has given me hope for a future. Taxol was a drug that was given to buy me more time. It was meant to keep the "cancer at bay" and "minimize the pain from my metastasis." After years of enrolling in clinical trials and taking the latest, greatest, best, most touted new medicines, Taxol, first discovered back in 1967, has turned out to be "The Drug" that I was hoping for! At least for now....

When I last got scans back at the beginning of October, my tumor markers were extremely high. The most important tumor marker in my blood that my doctors look at each week is called CA 27-29 and it is a tumor marker that breast cancer cells leave behind in patient's blood. Normally, in a healthy person, CA 27-29 counts range between 0-38. My CA 27-29 count was 965! This critically high tumor marker number is what prompted all the discussion about getting my affairs in order and it's what prompted getting a CT scan earlier than expected, which is what uncovered the tumors in my lungs and bones.

Well ladies and gentlemen, I am happy to tell you that my blood work this past month has been steadily dropping! The first few weeks of Taxol, they didn't take any tumor marker bloodwork. They wanted my body to get used to my new drug before trying to measure its efficacy. November 2nd was the big day. November 2nd, I went in with Big Man and Mom to meet with my doctor to find out the results of my first tumor marker test on Taxol. I was petrified! I was so scared that the Taxol wouldn't have had an effect and we would be one more drug closer to death.

I was prepared to give you all an update on my hair loss and impending doom on November 2nd when, to my surprise, I was told my tumor markers had dropped from 965 to 587. I was shocked, I was thrilled,  I was completely unprepared for this foreign thing we call "Good News." However, I was still afraid. I realized then that I was afraid to hope. Cancer had left me jaded and afraid of hope.

Unable to share the news for fear of a jinx, I simply stayed silent. I stayed off the radar. As unused to good news as I had become, I continued planning as if the good news hadn't happened. I still want to schedule a meeting with my priest, but I no longer had nightmares about the pearly gates.

Then, at my appointment on November 16th, my markers fell to 300!

Then, at this week's appointment, my marker fell to 234!

I feel a little bit like I'm watching a Thanksgiving football game, and my team just got a first down. Improbable as it might be, we got another first down, and then another. The TD is now within my sites. I'm allowing myself to dream. I'm allowing myself to set goals. If I could get down below 100... 38 could be attainable. 38 means normal. How I would love to be normal! I'm right there in field goal range of normal. I can taste it.

November has allowed me to hope.

Back in October, my doctor told Big Man and me to go on a trip. We should take a trip so that we could take quality time away together while I was still feeling good, today. My bone pain was manageable with Advil, today. We needed to take advantage of our time together because we were together, today. So we did, we booked a trip to Europe at Christmas and we're so excited! But our excitement was also tinged with sadness. What was this trip? People take honeymoons. People now take "Babymoons." What was this a "Goodbye-moon?"

 Now with this good news, that trip has taken on such a more fun and exciting feel. What other good news might we celebrate come Christmas? Maybe we could finally be like other couples and truly leave our worries at home? Maybe in the New Year we could start imagining a new home in our future? A home where we had the room to host more than 6 people for Thanksgiving dinner? A home of our very own, not an 800 sq foot condo? A home that we could decorate as we see fit for the Christmas holiday? A home that we could call our forever home? A home with space for an office AND a nursery? A nursery.

At chemo on November 23rd, instead of blogging as I should have, or answering emails as I should have, I allowed myself to google adoption resources in Massachusetts. I bookmarked the Massachusetts Department of Children and Families. If I get those tumor markers down to 38, down to the normal patient range, I'm going to allow myself to call their 800 number and start asking questions. Then maybe in 2013, when we're in our new forever home, I could actually schedule a home study. Hey, a girl can hope can't she?

I may be bald and covered in acne. I might not recognize myself in the mirror. I may have daily nosebleeds. I may have to sleep 13 hours every night, but at least I have hope. Those are just inconveniences. I wouldn't even elevate them to the level of "side effects." They are a mere nuisance, and they are a small price to pay for hope.

I realize as I'm writing this that I am getting all excited about just one month's worth of results. I know this is a marathon and not a sprint. I know that things can turn on a dime. But this Thanksgiving, I'm so Thankful for hope. I'm so Thankful for just one more day; just one more year. I don't want to get too greedy. I don't want to get ahead of myself. But I do want to take a moment and enjoy that future so many people take for granted. Thanks, God.

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!