This summer has officially been the hardest season of my cancer journey. After seven years battling, I thought I had seen it all. I thought I could handle anything thrown at me in that doctor's office with grace and power. I thought I had already dealt with and learned how to overcome disappointment and setbacks. I was wrong.
Cancer has taught me several new lessons this summer. Learning has been painful, isolating, discouraging....heartbreaking.
My niece, Annabelle, was born with a full head of beautiful brown hair, brilliant blue eyes, and charmingly fat cheeks on April 5th. I was there to greet her, which was so special! You won't see pictures of baby Annabelle on this blog as she isn't my baby to share with the world, but I must say, she's the most gorgeous baby I've ever seen. I may be biased though.
On April 6th, I spent the sweetest morning ever in Annabelle's hospital room, smelling baby smells, listening to coos and cries, and meeting this new life that magically appeared and completely changed our family dynamic forever. I left the hospital, checked my cell phone and saw a message from my doctor. Cancer has an unpleasant habit of injecting itself right into the middle of every major life milestone - engagements, weddings, babies, holidays. Scan results were back and my cancer was growing, quickly. Change would be needed. Could I get to the hospital at 7am on Monday. Flights home were moved up, Annabelle visits were cut short. I didn't tell the glowing new parents about this news though. This needed to be their weekend. Cancer might ruin my day, but it sure as hell wasn't going to ruin their's!
The plan on Monday was to enroll in a clinical trial. Unfortunately, no clinical trial seats were available. Dr. P thought a trial might open up at the end of the month. For now, she was putting me on an FDA approved drug, Navelbene, that I had been on before. It had been several years before and I had stopped taking the Navelbene early. We didn't think my cancer had ever grown on it. The cancer hadn't shrunk on Navelebene, but it had stayed stable and the side effects were minimal. This seemed to be a good "place holder" for a month while a clinical trial seat opened up. I wouldn't use up any previously unused FDA approved drugs, we would keep all new drugs in my "arsenal" should we need them in the future, but I wouldn't leave the cancer untreated.
A month went by and no new trial opened up. That was heartbreak number 1.
Everyday I waited by the phone holding my breath, distracted and stressed out and snippy with the husband, hoping beyond hope that this was the day we would get the call. This was the day a trial seat would open. I can only imagine this must be what organ transplant patients go through. I hate it. I never want to experience that kind of long term anticipation and constant disappointment as each day's sun sets again.
Two months go by, a trial seat opens! This trial, however, is not ideal. It is a phase 1 trial of a type of drug called a "protein kinase inhibitor" I had taken a protein kinase inhibitor in a clinical trial setting before and had a very violent reaction. My platelet count fell dangerously low and I was breaking out into bruises all over my body. Just sitting on the couch watching tv, I would stand up and my whole back would be covered in bruises. It was scary. I didn't want those side effects again, but beggars can't be choosers and not all protein kinase inhibitors are created equal, so I jumped in with a smile and both feet!
Enrolling in a clinical trial is harder than getting into Harvard. The patient must first go through a "drying out period." No other chemo drugs for a month. You have to swallow your fear, put all your eggs in this clinical trial basket, and hope your cancer doesn't grow for the next month chemo-free. You then spend the next month going through test after test after test- bone scans, brain scans, lung tests, blood work, blood work, and more blood work. I was at the hospital for days on end getting different tests. Each test was more stressful than the next.
Finally the big day is here. Somehow we've made it to July, I've barely blinked or had time to wrap my head around this, and I'm still not being treated with any drugs! I am sitting in my gorgeous peach hospital gown, freezing cold in the AC, excited to start my new lifesaving clinical trial. The doctor comes in to review the last round of blood work and perform the last exam before that priceless drug can enter my bloodstream. As she is going through the blood work, we get to the last page of like 6 pages of results. She suddenly stops, "hmmmmmm"s, looks at me, looks back at the computer screen, frowns. Turns out, my liver function has dropped over the past month of no chemo because the cancer in my liver has grown. One little liver output - billirubin - that rarely changes and we rarely look at has gone up drastically. My billirubin has disqualified me from the clinical trial.
I struggle not to cry. I struggle not to scream. I struggle not to strangle Dr. P right there in the exam room.
She quickly calls in reinforcements and starts looking through her email and on the clinical trials website for another option. All options require my billirubin to be lower. I am officially a clinical trial reject. I can't enroll in anything. It is back onto drugs that are designed, not to kill, but to (hopefully) keep things stable.
After all this waiting, all this hoping, all this sitting by the phone.
I can't handle it. I shut down. The disappointment is too much. I am sick and tired of being cancer girl. I am paralyzed. Every time I think about my cancer now, I cry. I break down. I am shedding tears on my keyboard now as we speak. I have reached my limit. My Big Girl Pants can only stretch so far. A girl can only handle so much. I can handle no more.
I don't call my friends. I stop my blog. I don't want to talk about how I'm doing. I'm not doing well.
I throw myself into work - where I am anonymous. Where I am judged, not by my liver output, but instead by things that are within my control. I flourish at work. Work makes me calm. Work makes me normal.
I throw myself into caring for my husband, who is struggling perhaps even more than I. He can't make this better. The drugs do not keep things stable. My tumor markers rise from 200 to 500 to 600 to 6,000 to 8,000. Big Man can only watch as I lose my appetite and get skinnier and skinnier. I struggle to catch my breath when I walk the dog because the lesions in my lungs are getting larger. I wake up in the middle of the night with excruciating pain in my side from my enlarged and painful liver. Every day I feel new swollen glands, in my neck, in my belly, in my groin. The cancer is in control. I can't get on a trial, what can I do? I can bake him birthday cake. I can cook him 5 course dinners. We can watch movies together and go out to long silent dinners together and just spend time clinging to one another.
But this life is not good. A life revolving around work and caring for the home is good, but is not enough. We need friends, we need to come out from the shadows and share. We can't keep this news to ourselves forever.
I am starting to call friends. I am keeping engagements. I am trying.
Last week, even though I was getting over a major chemo-induced bout with Thrush, which is a horrible virus I don't recommend any of you contract if you can help it, I insisted upon keeping a long standing Annabelle visit. It was hard traveling when I wasn't 100%. It was also scary to travel when every single person around me seemed to be coughing and sneezing and touching things nearby. I hate traveling with cancer, but I realize now that I can't keep doing what I'm doing or I'm going to keep getting what I've got. I am sad. I cry a lot. I am missing fun summer things. I have to move forward.
I am so glad I traveled. The latest chemo drug we are trying to get my cancer under control is making me lose my hair again. I only have about 3 months worth of hair growth, but it is hard won and has done a lot to boost my self esteem. My hair is starting to fall out again. Hair is everywhere. Taking showers is depressing. The last of my eyelashes fell out on Sunday.
But when you get a spit-filled, toothless grin from your niece at 7am as she greets you in her crib smelling all baby-ish, when she looks at you, and recognizes you, and knows that "this girl is fun! I know you! It's time to have fun today...." That 4 month old grin wipes away all the pain and sadness and hair loss. When you are showered with 4 month old Annabelle smile, you feel like the most gorgeous girl in the world - hair loss be damned.
I want to have more of those lifetime moments. I want to have more moments of belly laughter around a dinner table with friends. I want to have more late nights of card games with my sister in law. I want more Annabelle smiles. Even if I feel sick, there are things I can do and should do. I was able to make that trip home. I want to plan more of them. Even though I'm crying over the keyboard, I am perfectly capable of sharing with all of you, and I know that you will lift me up, and somehow magically make me feel better as you always do with your support and love.
So here I am, this is my coming out party. Things are going well these days. This has been hard. But I am moving forward, and I am insisting on focusing on and planning more wonderful, happy lifetime moments. I am hopeful that this latest drug regimen - Herceptin, Docetaxol, and Perjeta - is THE drug regimen that stops all of these painful cancer-induced side effects. I am hopeful that I will start to feel like myself again, even if I am my bald self. I am hopeful that I will have many more Annabelle visits and that I can watch her start to sit up on her own and crawl, which she is dying to do!
I am going to start living life again.
Thanks for being patient with me as I struggle with this. I care about all of you very much.
Showing posts with label death. Show all posts
Showing posts with label death. Show all posts
Tuesday, August 28, 2012
Thursday, March 29, 2012
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:
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?
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. “
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. “
Friday, November 25, 2011
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.
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.
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.
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| Me in my wig the night after Big Man shaved my hair. That's one good-looking wig & he's one good-looking hubby! |
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.
Friday, October 7, 2011
The Importance of October
October is here again and the newspapers are full of opinion pieces about the commercialization of breast cancer. People are arguing, yet again, that we are "pink washed" and that this Breast Cancer Awareness Month takes away from other cancer research.
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
Friday, August 5, 2011
A Huge Blow
I have to ask for your forgiveness, kind readers. I admit, I have been hiding and I have been procrastinating. Both of these qualities are unusual for me. I am usually very forthright, open, and a take the bull by the horns kinda gal, but, please allow me to explain my silence.
A couple of months ago, I celebrated stable scan results and looked forward to a quiet summer. I promised all of you blog readers that I was going to celebrate my summer of stability by focusing on others and ending the Bridget Show.
The reason I have been hiding is because the Bridget Show has come to the forefront again- way sooner than expected.
I desperately want to be normal, quiet, and not the center of attention or the focus of pity, so I didn't want to share my news with you blog readers until I absolutely had to share it. I wanted to put off this post for as long as necessary. I wanted to put off the questions of "How are you doing" and "what can we do to help?" etc, etc for as long as possible. At the same time, I also couldn't in good conscience lie to all of you. I couldn't write about other people's stories, or cover topics like cancer and fertility or cancer and careers, and pretend my world was quiet and perfect, when in fact my whole world was falling apart. So I chose the middle ground. I didn't lie, but I didn't come clean. I chose silence.
Please accept my apology. Today, I'm coming clean.
The cancer has grown. The Tykerb/Xeloda regimen has failed.
It all started with my stable scan results. At the same time that the doctors look at my CT scan, they also take blood work and keep an eye on my "tumor markers." Tumor markers are like trails of trash that my cancer leaves behind in my bloodstream as it grows and travels. When my tumor markers decline, it is a sign that my therapy is working. When they increase, it is a signal that my treatment is failing. That said, tumor markers are unreliable, so we don't jump to 'all hands on deck' after just one bad blood test. Instead, like playing the stock market, we follow the tumor markers' trends and we make decisions based on trends after looking at weeks and weeks of data points.
So, the same day that my CT scan results showed stability, my blood work showed increased tumor markers. Because we focus on tumor marker trends, my doctors played down the blood work and focused instead on the stability seen on the scan. However, after we saw a second large jump in my tumor markers the next visit, the doctors started preparing me for bad news. After a third jump, the doctors said, let's be safe and scan you early.
After the second appointment, when concerns were first raised, I felt a knot in the pit of my stomach. My doctors had never before focused much on tumor markers. My subconscious was telling me that this was not good. I wanted to hide. I wanted so desperately for my life to be normal and wonderful and perfect. I wanted so badly to enjoy the blissful summer I had planned.
I couldn't bring myself to blog. Sharing the news made it real- I was admitting to something I couldn't yet admit to myself. Like I said before, I took the easy approach and I disappeared- from blogs, from Twitter, from Facebook, from email returning, even from some phone calls. I apologize, friends.
Instead of blogging or emailing with all of you, I threw myself into home and work. I cooked for Big Man like he was a family of 4. I made mango salsas and elaborate skewers of meat and fancy veggies. Like Izzy on Grey's Anatomy, I baked- cookies, and brownies, and cakes- oh my! I walked the dog 4 times a day for long walks through new neighborhoods. I stared at her perfect, cute little face. I stayed up late and stared at the Big Man while he was sleeping (creepy! but also romantic) and I imagined what our kids would look like. I didn't want to fall asleep each night. I stayed awake later and later. I didn't want to go to bed because I didn't want the party to end. Every day that passed was one day closer to the bad news that the butterflies in my stomach knew was coming.
I also threw myself into work. For those who don't know, I am a coach as well as a 5 time walker for the Susan G. Komen 3-Day for the Cure. A few months ago, I moved into a new position at the 3-Day- I no longer worked nationally with every event, I now am the chief cook and bottle washer here in Boston. That really is my title "Boston's chief cook and bottle washer!" I threw myself into the new job working weekends and nights, and loving it! The Boston 3-Day for the Cure was July 22-24th, otherwise known as the hottest weekend in 100 years or something. I relished the busy-ness and the heat and the challenge. I wasn't winning in my own cancer battle, but I sure as hell could work my tail off and save someone else. I also relished the fact that, at work, I knew what was expected of me. I could handle work. I could control work. There were SOPs and checklists and deadlines. There is no SOP for metastatic breast cancer. I couldn't control my tumor markers.
I loved hiding.
So this brings us to a couple weeks ago. On Sunday July 24th, I celebrated with the 1,800 walkers and 350 crew as they crossed the finish line of the 2011 Boston 3-Day. I hugged my survivor friends. I cried with them. I laughed with them. I took pleasure in hearing other people's stories instead of sharing mine. I looked fabulous. I felt fabulous. I was a success. Life was good.
The next day, on July 25th, life got tough. At 7am, I lay alone in the tunnel of a CT scanner, praying because my life depended on it.
This unexpected, early scan showed that in just 2 months my cancer had grown in both my liver and my lymphnodes. In my abdominal lymphnodes, the cancer used to be about 1mm. The cancer was now more than 2cm. In my liver, my tumor previously was 1cm. My liver tumor was now 2.6cm. In just two months, my tumor markers went from 40 to 120.
Allow me to explain those that these tumors, my cancer, is all still very small and very manageable. This is not a "get your affairs in order" situation. I don't want everyone to freak out or misread me. I still plan on celebrating my 30th birthday in two years and throwing the most fabulous Birthday Bash the world has ever seen, but there is also no doubt the cancer is growing. We need to take action and stop it.
There are two things that make me angry about this situation. First of all, the trials and tribulations of Tykerb and Xeloda were all for naught. That regimen never really worked for me. I was on them for only 4 months. I suffered with hives, painful and peeling feet and hands, and acne on my face that made young children run and hide. All of that was for nothing. That said, the Tykerb and Xeloda probably did slow down my cancer's growth. The cancer grew, but it took 4 months for us to notice anything. I guess I'll take that, but I'm not happy about it.
Secondly, I feel like we are getting down to the wire. I just keep taking hit, after hit, after hit, and its getting to me mentally. These past 2 years it seems as though nothing has worked! I've had some victories, but I have had more losses than victories. My "arsenal" of drugs has now dwindled to 4. There are 4 more standard therapies available to me if this cancer keeps growing. That does not make me happy. I need 84 years worth of drugs if I am to grow old with Big Man as I have planned. When I counted the remaining number of drugs with my doctor, I gulped and clutched Mommy's hand desperately. In the past I have felt scared, disappointed and worried, but I've never felt desperation before.
I am starting a new chemo called Gemzar. I am going to take it in combination with my BFF, the drug Herceptin. The big bummer is that Gemzar is given through IV over several hours...every week. No more fantastic trips to Paris or Milan for me. I might have to miss a few friends' weddings. Every single week I have to show up like a good little girl and get my drugs. Cancer will be an even more frequent intruder in m life. I will spend even more time at the hospital instead of out living like every other 28 year old. Unfair!
Gemzar causes flulike symptoms. After my first treatment a few days ago, I ran a fever, and had chills and muscle aches. It's pretty daunting to imagine suffering through a flu every single week for the foreseeable future.
My doctor says in most patients the flulike symptoms diminish over time. I won't run a fever or have chills, I'll just be achy. Let's hope that diminishing happens sooner rather than later. After all, I have a full plate. I have to take over the world and cure cancer, remember?
The realities of entering this next, scarier phase in my fight against breast cancer are particularly daunting. All of the most exciting and talked about supposed "cures," all of the hottest and latest drugs, well, I've taken them. They haven't worked. Now I am on to "standard therapy." I am hoping and praying that Gemzar gives me stability, but after 3 failed regimens in one year, I just don't know if I can say that I am kicking cancer's ass. Cancer seems to be kicking mine these days. On the internet I found a synopsis of the results of clinical trials of this Gemzar and Herceptin regimen, the median time to progression for patients (meaning the median amount of time that these drugs gave patients' the stability that I so desperately want) was 5 months. The median survival time for patients receiving this regimen....10 months. I want more than 10 months! I am not ready to die in this calendar year. I have to assume those statistics will not be mine, but they still are staring me in the face. They still haunt me every night as I try to fall asleep.
My doctor is my biggest fan. It makes me choke up just thinking about her. She's wonderful. She tells me she has seen some patients who were on this drug for several years. She's confident of my future and she scoffs when I mention that I am doubting my hope of a 30th birthday. She says the results of this regimen vary greatly by individual. She also reassured me because I'm in great shape and I'm so very young.
With her confidence in my back pocket, I am entering this new chapter with my Big Girl Pants on tight. She's right, I can handle this. She wouldn't give it to me if she didn't think it would help. So, even though I am scared and worried and disappointed, I have to put on my Big Girl Pants and focus on hope. I suppose that is what faith really is, believing in something when it seems impossible. True faith isn't believing in something when the chances of it happening are good. True faith is continuing to believe even if that seems crazy, especially when it seems crazy. I'm choosing to believe. I am going to continue to believe in my future. I will continue to believe that Big Man and I could one day have babies. I will continue to believe that we will grow old together. I will continue to believe in it, and I can't wait for that to happen!
Today though, I ask you for some favors. I ask you for prayers, but not pity, and I ask you for research dollars, passion, and activism, but not gifts or cards. We need to cure this and I can't do it alone. We need to cure this SOON.
Even though I hoped and prayed and hid from reality for the past two months, I now must admit: the Bridget Show continues. I just hope that this past year of my blogging has opened your eyes to the roller coaster that is Life With Breast Cancer. I hope that my blog has made you understand why the world needs more pink. I hope you realize that, contrary to popular opinion, this battle for a cure is far from over.
Every 69 seconds someone in the world dies from breast cancer.
That needs to end....now. I don't want to add my life to that statistic, but I can't help but wonder, when will my 69 seconds come around?
A couple of months ago, I celebrated stable scan results and looked forward to a quiet summer. I promised all of you blog readers that I was going to celebrate my summer of stability by focusing on others and ending the Bridget Show.
The reason I have been hiding is because the Bridget Show has come to the forefront again- way sooner than expected.
I desperately want to be normal, quiet, and not the center of attention or the focus of pity, so I didn't want to share my news with you blog readers until I absolutely had to share it. I wanted to put off this post for as long as necessary. I wanted to put off the questions of "How are you doing" and "what can we do to help?" etc, etc for as long as possible. At the same time, I also couldn't in good conscience lie to all of you. I couldn't write about other people's stories, or cover topics like cancer and fertility or cancer and careers, and pretend my world was quiet and perfect, when in fact my whole world was falling apart. So I chose the middle ground. I didn't lie, but I didn't come clean. I chose silence.
Please accept my apology. Today, I'm coming clean.
The cancer has grown. The Tykerb/Xeloda regimen has failed.
It all started with my stable scan results. At the same time that the doctors look at my CT scan, they also take blood work and keep an eye on my "tumor markers." Tumor markers are like trails of trash that my cancer leaves behind in my bloodstream as it grows and travels. When my tumor markers decline, it is a sign that my therapy is working. When they increase, it is a signal that my treatment is failing. That said, tumor markers are unreliable, so we don't jump to 'all hands on deck' after just one bad blood test. Instead, like playing the stock market, we follow the tumor markers' trends and we make decisions based on trends after looking at weeks and weeks of data points.
So, the same day that my CT scan results showed stability, my blood work showed increased tumor markers. Because we focus on tumor marker trends, my doctors played down the blood work and focused instead on the stability seen on the scan. However, after we saw a second large jump in my tumor markers the next visit, the doctors started preparing me for bad news. After a third jump, the doctors said, let's be safe and scan you early.
After the second appointment, when concerns were first raised, I felt a knot in the pit of my stomach. My doctors had never before focused much on tumor markers. My subconscious was telling me that this was not good. I wanted to hide. I wanted so desperately for my life to be normal and wonderful and perfect. I wanted so badly to enjoy the blissful summer I had planned.
I couldn't bring myself to blog. Sharing the news made it real- I was admitting to something I couldn't yet admit to myself. Like I said before, I took the easy approach and I disappeared- from blogs, from Twitter, from Facebook, from email returning, even from some phone calls. I apologize, friends.
Instead of blogging or emailing with all of you, I threw myself into home and work. I cooked for Big Man like he was a family of 4. I made mango salsas and elaborate skewers of meat and fancy veggies. Like Izzy on Grey's Anatomy, I baked- cookies, and brownies, and cakes- oh my! I walked the dog 4 times a day for long walks through new neighborhoods. I stared at her perfect, cute little face. I stayed up late and stared at the Big Man while he was sleeping (creepy! but also romantic) and I imagined what our kids would look like. I didn't want to fall asleep each night. I stayed awake later and later. I didn't want to go to bed because I didn't want the party to end. Every day that passed was one day closer to the bad news that the butterflies in my stomach knew was coming.
I also threw myself into work. For those who don't know, I am a coach as well as a 5 time walker for the Susan G. Komen 3-Day for the Cure. A few months ago, I moved into a new position at the 3-Day- I no longer worked nationally with every event, I now am the chief cook and bottle washer here in Boston. That really is my title "Boston's chief cook and bottle washer!" I threw myself into the new job working weekends and nights, and loving it! The Boston 3-Day for the Cure was July 22-24th, otherwise known as the hottest weekend in 100 years or something. I relished the busy-ness and the heat and the challenge. I wasn't winning in my own cancer battle, but I sure as hell could work my tail off and save someone else. I also relished the fact that, at work, I knew what was expected of me. I could handle work. I could control work. There were SOPs and checklists and deadlines. There is no SOP for metastatic breast cancer. I couldn't control my tumor markers.
I loved hiding.
 |
| Me as 3-Day coach with my blogger buddy Dusty Showers- Big Man, be afraid, be very afraid! |
The next day, on July 25th, life got tough. At 7am, I lay alone in the tunnel of a CT scanner, praying because my life depended on it.
This unexpected, early scan showed that in just 2 months my cancer had grown in both my liver and my lymphnodes. In my abdominal lymphnodes, the cancer used to be about 1mm. The cancer was now more than 2cm. In my liver, my tumor previously was 1cm. My liver tumor was now 2.6cm. In just two months, my tumor markers went from 40 to 120.
Allow me to explain those that these tumors, my cancer, is all still very small and very manageable. This is not a "get your affairs in order" situation. I don't want everyone to freak out or misread me. I still plan on celebrating my 30th birthday in two years and throwing the most fabulous Birthday Bash the world has ever seen, but there is also no doubt the cancer is growing. We need to take action and stop it.
There are two things that make me angry about this situation. First of all, the trials and tribulations of Tykerb and Xeloda were all for naught. That regimen never really worked for me. I was on them for only 4 months. I suffered with hives, painful and peeling feet and hands, and acne on my face that made young children run and hide. All of that was for nothing. That said, the Tykerb and Xeloda probably did slow down my cancer's growth. The cancer grew, but it took 4 months for us to notice anything. I guess I'll take that, but I'm not happy about it.
Secondly, I feel like we are getting down to the wire. I just keep taking hit, after hit, after hit, and its getting to me mentally. These past 2 years it seems as though nothing has worked! I've had some victories, but I have had more losses than victories. My "arsenal" of drugs has now dwindled to 4. There are 4 more standard therapies available to me if this cancer keeps growing. That does not make me happy. I need 84 years worth of drugs if I am to grow old with Big Man as I have planned. When I counted the remaining number of drugs with my doctor, I gulped and clutched Mommy's hand desperately. In the past I have felt scared, disappointed and worried, but I've never felt desperation before.
I am starting a new chemo called Gemzar. I am going to take it in combination with my BFF, the drug Herceptin. The big bummer is that Gemzar is given through IV over several hours...every week. No more fantastic trips to Paris or Milan for me. I might have to miss a few friends' weddings. Every single week I have to show up like a good little girl and get my drugs. Cancer will be an even more frequent intruder in m life. I will spend even more time at the hospital instead of out living like every other 28 year old. Unfair!
Gemzar causes flulike symptoms. After my first treatment a few days ago, I ran a fever, and had chills and muscle aches. It's pretty daunting to imagine suffering through a flu every single week for the foreseeable future.
My doctor says in most patients the flulike symptoms diminish over time. I won't run a fever or have chills, I'll just be achy. Let's hope that diminishing happens sooner rather than later. After all, I have a full plate. I have to take over the world and cure cancer, remember?
The realities of entering this next, scarier phase in my fight against breast cancer are particularly daunting. All of the most exciting and talked about supposed "cures," all of the hottest and latest drugs, well, I've taken them. They haven't worked. Now I am on to "standard therapy." I am hoping and praying that Gemzar gives me stability, but after 3 failed regimens in one year, I just don't know if I can say that I am kicking cancer's ass. Cancer seems to be kicking mine these days. On the internet I found a synopsis of the results of clinical trials of this Gemzar and Herceptin regimen, the median time to progression for patients (meaning the median amount of time that these drugs gave patients' the stability that I so desperately want) was 5 months. The median survival time for patients receiving this regimen....10 months. I want more than 10 months! I am not ready to die in this calendar year. I have to assume those statistics will not be mine, but they still are staring me in the face. They still haunt me every night as I try to fall asleep.
My doctor is my biggest fan. It makes me choke up just thinking about her. She's wonderful. She tells me she has seen some patients who were on this drug for several years. She's confident of my future and she scoffs when I mention that I am doubting my hope of a 30th birthday. She says the results of this regimen vary greatly by individual. She also reassured me because I'm in great shape and I'm so very young.
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| My favorite poster from this year's Boston 3-Day This is going to become my mantra! |
Today though, I ask you for some favors. I ask you for prayers, but not pity, and I ask you for research dollars, passion, and activism, but not gifts or cards. We need to cure this and I can't do it alone. We need to cure this SOON.
Even though I hoped and prayed and hid from reality for the past two months, I now must admit: the Bridget Show continues. I just hope that this past year of my blogging has opened your eyes to the roller coaster that is Life With Breast Cancer. I hope that my blog has made you understand why the world needs more pink. I hope you realize that, contrary to popular opinion, this battle for a cure is far from over.
Every 69 seconds someone in the world dies from breast cancer.
That needs to end....now. I don't want to add my life to that statistic, but I can't help but wonder, when will my 69 seconds come around?
Tuesday, December 7, 2010
The Dreaded D-Word
For those of you not receiving Google alerts for all news cancer, as I am, you may or may not have heard that Elizabeth Edwards has stopped treatment for her metastatic breast cancer and is preparing to die. Mrs. Edwards is a beacon of hope in the metastatic breast cancer world, so this news will certainly come as a huge blow to my metastatic friends. Losing Mrs. Edwards brings to light the one thing which we would all love to forget: we're dying here. We are living fully, but we're living while dying. This breast cancer can kill us.
I think it is safe to say that once you receive the diagnosis of metastatic, once you review the statistics, once you realize the cancer is in a vital organ, you have imagined the conversation with your doctor that Elizabeth Edwards had this week: "We do have more drugs to give you, but they won't help you. Too much has happened. This is the end of your story. Let's get you comfortable."
Right now, in my own metastatic breast cancer journey, my treatment is working and my doctors' outlook is positive, but losing Mrs. Edwards brings to the forefront that fear that I like to forget on the good days.
With this news, I figure this is as good a time as any to broach that huge topic that we've not yet discussed here on this blog. Let's talk about Death.
I am not afraid to die. Not at all. Not even a little bit. I can confidently say, I am ready. Whenever that day comes, whether it's today or 40 years down the road, I will not be scared.
I will not be scared for myself anyway. I am worried about my Big Man and my Mommy and my family and friends. I am scared and sad for them because I lost my father. My dad died two years ago, very suddenly, of a heart attack on his way home from work. My father died on Father's Day. He was 59.
I know all too well the huge hole that is ripped into the very fabric of your being when you lose someone. I know all too well the pain that will never get better. Losing a wife, losing a husband, losing a parent, a sibling, losing a child, that pain never goes away. Every day you think about it, but every day you learn to live with it. You don't move on, you just continue moving. Life goes on, you must go on, but you must go on with this huge sadness. You learn to live, but you are never, ever the same. I am so incredibly sad that my Big Man might have to carry that burden one day. I want to carry that instead. I want him to go first. I love him so much, I don't want him to experience a single moment of pain in his entire life. I want to take his pain away.
I feel so deeply for Elizabeth Edwards' young, beautiful children. My heart is breaking for them. I hope she is holding them close today.
But I also don't want Mrs. Edwards' death to just be something sad that we read about. This moment needs to be more than that. I believe we need to change the way we talk about death and dying. Anyone with a diagnosis as serious as cancer should have a holistic approach to her care and should consider and have plans in place for end of life care. Just as someone has a team of doctors prepared to help them fight the disease, I also have plans in place to help me die with dignity and hope. I have met with my parish priest. I wish this same preparation for every cancer survivor. I firmly believe that knowledge is power. The earlier you talk to me about death, the longer I have to get ready for it. I believe that an introduction to hospice care and regular discussions about 'what if' scenarios are vital for any patient facing a life threatening illness, no matter your prognosis.
If done correctly, slowly, and in an open way, we can take away the fear and the dark cloud that surrounds hospice, death, and dying. Patients will be better prepared to make important end of life decisions. Your judgment might be clouded in the midst of this devastating news. Isn't it better to have ample time to consider these things? Some patients say, "I want to be kept alive as long as possible. Do everything you can." in the heat of the moment and in disbelief of the news, but if given time and space to consider this decision, they might come to a different conclusion.
I also think that having these last moments together will help my loved ones after I am gone to remember those final weeks and months fondly. There should be laughter in there. There will be tears too, but I also want laughter and good memories. I want final wonderful conversations. I don't want my final moments to be all about me in bed exhausted. I want the Big Man, Mommy, Brothers, and my Girls to remember this time with just some tinge of fondness and peace.
I want to be clear here, I don't want to die. I want to grow old with the Big Man, and I plan to! Growing old with my hubby is my deepest desire. I feel that desire deep down in my bones and in the deepest part of my heart, but I also think that how you leave this world is just as important as how you came into it. For some reason though, no one wants to talk about death. I think if we started a conversation about it, it wouldn't be nearly as scary as you all expect. I want my death to be somewhat beautiful. Even if cancer rages through my body and leaves me a shell of my normal self, my soul will still be there. My character will shine through. The way I look into your eyes, the way I hold your hand, and the way I choose to die. All of this will tell you that my soul lives on, even after I take my last breath. My soul will be here.
Expectant mothers spend months planning for the big day- c-section vs. natural childbirth, even 'water birth', midwife vs. obstetrician, blue, pink, purple or green nursery, crib or basinette, boy vs. girl, jack vs. john, abigail vs. sophia? Women also spend every moment starting in pre-school planning our wedding day. Beach vs. church, band vs. dj, the dress! Men, you do it too. You plan becoming professional athletes or firefighters. We plan so much of our lives. I don't understand why we don't also plan our last days together, what could be more important?
Whenever it happens, be it tomorrow, when I'm 31, 81 or 101, I want my funeral to be a great send off. If I spent months planning my wedding, why wouldn't I do the same for my funeral? My wedding day was the best day of my life full of euphoric joy and the overwhelming feeling that, for just that one moment, all was right in the world. My personality and the Big Man's personality shone through on that day. We had very personal touches throughout. Why settle for a sub-par funeral? I want fabulousness. I want my funeral to reflect my personality. I want it to be comforting to my friends and family. I want to send a little message of comfort. I want people to realize that I'm still here. Even after I'm gone, I'll still be there. This is my Great Goodbye. How can you not take some time to plan that? It is so incredibly important.
And so, I've spent a lot of time in thought about how I want to live my life, but also how I want to leave it. I have read the Bible to find appropriate readings that offer hope and comfort and my perspective on the life I've led. I've found hymns that I love that bring me comfort and that make me cry.
But even more than the process of dying, I'm also not afraid of death itself. I am not afraid of the unknown. I have a deep belief in God and I deeply believe that my father is still with me, on some level that I can not comprehend. How can I have this deep faith and belief? Especially since my life has been so very difficult, I of all people have every reason not to believe. I have every reason to get angry with God and turn from all of that "hocus pocus." I have this deep faith for three reasons: I have experienced moments when I know deeply that my father is still with me, I have been humbled by my own power through this journey, and I have found that certain people enter my life at exactly the right moment and I believe those people are my little angels. My fight has also, as I mentioned on Thanksgiving, humbled me to the sheer hugeness and beauty of this world. How can one not believe in God when you see a baby being born?
I believe that people are scared of death because we don't know what happens afterward. I was scared to death at the beginning of this journey about the fear of recurrence. But then one day my cancer returned, and you know what? I handled it. I dealt. The scariest thing happened and it wasn't so scary after all. It was devestating, but with the right little angels by my side, I got through. I deeply believe that death will be the same way. It is something beyond my comprehension, which is why it is scary. If you can not imagine something or understand something it is immediately scary. But if I can handle this crazy life I've been given, I can certainly handle death with beauty and grace.
And so, Mrs. Edwards, I feel deeply for you today. I hope that your family has the time they need and deserve with you. I hope you have those important conversations with your little ones. I am glad you are at home, but I am so sorry that your family has to face this. I hope your faith brings you peace and hope in the midst of this sorrow. I hope for you what I hope for myself, I hope you find peace and love in these coming weeks, and not suffering. I know you will face this with the same dignity and grace that you have faced all of your life's trials. You have, throughout your life facing unimaginable tragedy, always been a lady. You will always be a model for me.
I think it is safe to say that once you receive the diagnosis of metastatic, once you review the statistics, once you realize the cancer is in a vital organ, you have imagined the conversation with your doctor that Elizabeth Edwards had this week: "We do have more drugs to give you, but they won't help you. Too much has happened. This is the end of your story. Let's get you comfortable."
Right now, in my own metastatic breast cancer journey, my treatment is working and my doctors' outlook is positive, but losing Mrs. Edwards brings to the forefront that fear that I like to forget on the good days.
With this news, I figure this is as good a time as any to broach that huge topic that we've not yet discussed here on this blog. Let's talk about Death.
I am not afraid to die. Not at all. Not even a little bit. I can confidently say, I am ready. Whenever that day comes, whether it's today or 40 years down the road, I will not be scared.
I will not be scared for myself anyway. I am worried about my Big Man and my Mommy and my family and friends. I am scared and sad for them because I lost my father. My dad died two years ago, very suddenly, of a heart attack on his way home from work. My father died on Father's Day. He was 59.
 |
| My Dad with all four kids. At the beach, celebrating my second birthday. I'm the half naked child with the amazing bowl cut August 1985, Ocean City, Maryland |
I feel so deeply for Elizabeth Edwards' young, beautiful children. My heart is breaking for them. I hope she is holding them close today.
But I also don't want Mrs. Edwards' death to just be something sad that we read about. This moment needs to be more than that. I believe we need to change the way we talk about death and dying. Anyone with a diagnosis as serious as cancer should have a holistic approach to her care and should consider and have plans in place for end of life care. Just as someone has a team of doctors prepared to help them fight the disease, I also have plans in place to help me die with dignity and hope. I have met with my parish priest. I wish this same preparation for every cancer survivor. I firmly believe that knowledge is power. The earlier you talk to me about death, the longer I have to get ready for it. I believe that an introduction to hospice care and regular discussions about 'what if' scenarios are vital for any patient facing a life threatening illness, no matter your prognosis.
If done correctly, slowly, and in an open way, we can take away the fear and the dark cloud that surrounds hospice, death, and dying. Patients will be better prepared to make important end of life decisions. Your judgment might be clouded in the midst of this devastating news. Isn't it better to have ample time to consider these things? Some patients say, "I want to be kept alive as long as possible. Do everything you can." in the heat of the moment and in disbelief of the news, but if given time and space to consider this decision, they might come to a different conclusion.
I was saddened as I read the news stories about Elizabeth Edwards. A source says she has a matter of weeks, not months. I am a firm believer in, the earlier the better. I would like to be given months of notice. Give me as much time as possible with my family to prepare for this. I don't want my death to be all about me in a hospital bed. I want to have a few final walks hand-in-hand with the Big Man to a coffee shop. I want to sit in the sun on a beach. I want to ride rollercoasters and bumper cars. I want to play epic board games with all of my brothers and my sister-in-laws late into the night. I want wine and cheese and hugs and kisses with my best friends. I want to watch a sunrise. I want to have a last amazing dinner out- a real last meal. Not a last meal in a hospital bed, but a real last meal at a fancy restaurant in a beautiful dress that takes hours and is multiple courses long. I want to have dessert. I want to have everything on the menu that looks good! I want to order that really expensive bottle of wine.
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| My Dad in his element: On Vacation with a cup of coffee and a paper |
I didn't have those final conversations with my dad. I didn't have the chance to ask him some questions. He didn't have the time to tell me things. I didn't give him hugs and kisses knowing it would be one of the last times I could have that. I want that for my loved ones. That chance.
I realize I am doing all of this now. I am already living every day like its my last, but there is something sadly beautiful about having these moments knowing that it is really and truly the last moment. I want that knowledge. Even though I'm living with cancer now, there is always hope on some level. There is always disbelief. That won't be me. I am not Elizabeth Edwards. Until you have The Conversation with your doctor, it doesn't become real. I want the reality of that for a couple of months before the actual end so I can have really good conversations and memories.
I also think that having these last moments together will help my loved ones after I am gone to remember those final weeks and months fondly. There should be laughter in there. There will be tears too, but I also want laughter and good memories. I want final wonderful conversations. I don't want my final moments to be all about me in bed exhausted. I want the Big Man, Mommy, Brothers, and my Girls to remember this time with just some tinge of fondness and peace.
I want to be clear here, I don't want to die. I want to grow old with the Big Man, and I plan to! Growing old with my hubby is my deepest desire. I feel that desire deep down in my bones and in the deepest part of my heart, but I also think that how you leave this world is just as important as how you came into it. For some reason though, no one wants to talk about death. I think if we started a conversation about it, it wouldn't be nearly as scary as you all expect. I want my death to be somewhat beautiful. Even if cancer rages through my body and leaves me a shell of my normal self, my soul will still be there. My character will shine through. The way I look into your eyes, the way I hold your hand, and the way I choose to die. All of this will tell you that my soul lives on, even after I take my last breath. My soul will be here.
Expectant mothers spend months planning for the big day- c-section vs. natural childbirth, even 'water birth', midwife vs. obstetrician, blue, pink, purple or green nursery, crib or basinette, boy vs. girl, jack vs. john, abigail vs. sophia? Women also spend every moment starting in pre-school planning our wedding day. Beach vs. church, band vs. dj, the dress! Men, you do it too. You plan becoming professional athletes or firefighters. We plan so much of our lives. I don't understand why we don't also plan our last days together, what could be more important?
Whenever it happens, be it tomorrow, when I'm 31, 81 or 101, I want my funeral to be a great send off. If I spent months planning my wedding, why wouldn't I do the same for my funeral? My wedding day was the best day of my life full of euphoric joy and the overwhelming feeling that, for just that one moment, all was right in the world. My personality and the Big Man's personality shone through on that day. We had very personal touches throughout. Why settle for a sub-par funeral? I want fabulousness. I want my funeral to reflect my personality. I want it to be comforting to my friends and family. I want to send a little message of comfort. I want people to realize that I'm still here. Even after I'm gone, I'll still be there. This is my Great Goodbye. How can you not take some time to plan that? It is so incredibly important.
And so, I've spent a lot of time in thought about how I want to live my life, but also how I want to leave it. I have read the Bible to find appropriate readings that offer hope and comfort and my perspective on the life I've led. I've found hymns that I love that bring me comfort and that make me cry.
But even more than the process of dying, I'm also not afraid of death itself. I am not afraid of the unknown. I have a deep belief in God and I deeply believe that my father is still with me, on some level that I can not comprehend. How can I have this deep faith and belief? Especially since my life has been so very difficult, I of all people have every reason not to believe. I have every reason to get angry with God and turn from all of that "hocus pocus." I have this deep faith for three reasons: I have experienced moments when I know deeply that my father is still with me, I have been humbled by my own power through this journey, and I have found that certain people enter my life at exactly the right moment and I believe those people are my little angels. My fight has also, as I mentioned on Thanksgiving, humbled me to the sheer hugeness and beauty of this world. How can one not believe in God when you see a baby being born?
I believe that people are scared of death because we don't know what happens afterward. I was scared to death at the beginning of this journey about the fear of recurrence. But then one day my cancer returned, and you know what? I handled it. I dealt. The scariest thing happened and it wasn't so scary after all. It was devestating, but with the right little angels by my side, I got through. I deeply believe that death will be the same way. It is something beyond my comprehension, which is why it is scary. If you can not imagine something or understand something it is immediately scary. But if I can handle this crazy life I've been given, I can certainly handle death with beauty and grace.
And so, Mrs. Edwards, I feel deeply for you today. I hope that your family has the time they need and deserve with you. I hope you have those important conversations with your little ones. I am glad you are at home, but I am so sorry that your family has to face this. I hope your faith brings you peace and hope in the midst of this sorrow. I hope for you what I hope for myself, I hope you find peace and love in these coming weeks, and not suffering. I know you will face this with the same dignity and grace that you have faced all of your life's trials. You have, throughout your life facing unimaginable tragedy, always been a lady. You will always be a model for me.
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