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 breast cancer. Show all posts
Showing posts with label breast cancer. Show all posts
Tuesday, August 28, 2012
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.
 |
| 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.
 |
| 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, June 7, 2011
OPP....Other People's Problems
It is hard to believe that we are already on our way into summer. I'm excited to share with all of you the news that my summer is shaping up to be my best summer in two years!
Why you may ask?
Well, as you all certainly know by now, my every happiness hinges on....
Scans!
Last week I received my latest scan results. These particular scan results were crucial as it was my first set of scans since starting the latest Tykerb/Xeloda regimen way back in January. And...
my cancer has shrunk!
As a refresher, back in January I got the worst Christmas present ever, the cancer equivalent of a bag full of coal. I was told that scans had shown new cancer in the lymph nodes in my abdomen. Well fast forward 6 months and those very same pesky spots in my abdominal lymph nodes were cut in half by my Tykerb/Xeloda!!
Everyone raise a glass to Daisy's Mommy!
These past six months have been mentally tough because I've been struggling with the new drug side effects while also not even knowing if the drugs were working! Over the past few months, the blood work I would get regularly was showing conflicting news. One week the tumor markers in my blood work would go down, the next they would go back up, the following week one tumor marker would go down and another go up. Until scan time, I was really driving blind. These were difficult pills to swallow not knowing their efficacy! (pun intended)
Now that I know these drugs will work for me, I can more graciously and confidently endure any and all side effects. Bring it on! I can handle it with a smile!
But more importantly, with this fantastic news, I am set free. I am finally able to focus on what matters most in this world- other people. The Bridget Show has taken a hiatus.There are so many beautiful things happening to my friends and family: marriages, babies, houses, jobs. There are also so many tragedies that I'm hearing about. There is so much cancer in this world. Others need my attention now while I can spare it.
I am sick and tired of the Bridget Show. For six years now I've been hogging the spotlight. I've been taking away some of the joy from so many joyous occasions. My friends feel sometimes that they can't complain to me about the trials of their own lives since I have "The Big C" on my plate. In reality, I would give any amount of money to NOT be the center of attention and to lose myself in the stories of others.
These past few weeks have been glorious. I feel as though I've come out of hiding. For the first time in ages I am planning ahead. I am planning life. Things many of you might take for granted seem so brave and liberating for me, like the freedom to book a non-refundable flight to visit Mommy four months from now.
I'm calling friends in high and low places and making plans for visits. I am gossiping, offering advice, listening, and truly being able to listen. My mind is not elsewhere. I am not preoccupied with my own fears.
To that end, I have taken the big scary step of beginning that memoir I've always threatened. I have 50 pages now and I love where it's going. Writing this blog is so very different from taking all of you along on a journey through my past, encouraging the reader to feel what I feel, taste what I taste, see what I see. This blog skims the surface. I share news and thoughts with you. In my memoir, I want you to actually sit in the doctor's waiting room with me. It's different writing and it's difficult emotionally to write, but it is exhiliarating. I realize now I never could have gotten these words on the page, I never could have looked back at the pain of my many diagnoses if all of my energy was focused on the latest set of bad news. This tiny little scan, the words "stable" have set me free. I can't wait to reach my full potential!
To kick off my memoir writing, I enrolled in a memoir writing class at night after work once a week. That class has again opened my eyes to the joys of hearing other people's stories. The woman fighting brain tumors, families with dirty little secrets, thrilling travel-logues, every one of my classmates is more eloquent than the next and every one has a story to tell. Each week we share 10 or 20 pages of our work and we offer critique. We tell our colleagues to "dig deeper here", or "I love this character", "hurry up", "slow down" - it is a beautiful creative experience.
At this class, I have learned yet again the lifelong lesson that every one has a story. Every one of us has a burden that she must carry, and so many of us carry these burdens silently. We put on a wig. We take the cell phone call from our sick mother from a bathroom stall. We tell little white lies to our children. We come to work everyday when life at home is imploding.
I want to carry that knowledge with me everyday in every interaction, and I hope you will keep that in your minds as well. Give the bagger at the grocery store an extra smile, allow the car at the stop sign to turn in front of you, hold the door open, choose your words carefully in every interaction, don't let your hot head or busy schedule cause you to raise your voice or cut corners, because you never know what sort of news the person next to you received today.
I am so thrilled to finally have the wherewithal to listen. Over the years, cancer has turned my heart to stone. My mind and my heart have been slowly numbed over the years. It happened gradually. As cancer dealt me blow, after blow, after blow, I retreated further and further into my own brain and into my own close circle of family and friends. I had room for their feelings and needs, but couldn't quite open myself up to sharing in strangers' pain and stories. If I felt all of your pain while also dealing with my own tragedy, I wouldn't be able to go on. The cold hard reality of life would be too much to bear. These scans have thawed me out and freed me a bit from that prison of my own mind, my own fears and worries.
At my writing workshop, I've seen firsthand that the whole world has been built on sharing stories. The greatest stories of all time, from Hercules to Robin Hood, even all of Shakespeare's great works, were all passed down orally over generations. A story shared can create an overnight sensation in a community, or it can ruin someone in an instant.
This summer I will, of course, still share my journey when it is appropriate or necessary, but I'm done complaining about my side effects for the rest of this summer. This summer, these next few months in between scans are a gift. I want to take advantage of this time to turn my focus outward. I want to share other stories of survival.
I don't need to celebrate this scan with wine and an expensive dinner, or an extravagent purchase. I can celebrate this win in my own fight by focusing on and shining a light upon the plight of my friends and neighbors. After all:
"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. ~Albert Pike"
Why you may ask?
Well, as you all certainly know by now, my every happiness hinges on....
Scans!
Last week I received my latest scan results. These particular scan results were crucial as it was my first set of scans since starting the latest Tykerb/Xeloda regimen way back in January. And...
my cancer has shrunk!
As a refresher, back in January I got the worst Christmas present ever, the cancer equivalent of a bag full of coal. I was told that scans had shown new cancer in the lymph nodes in my abdomen. Well fast forward 6 months and those very same pesky spots in my abdominal lymph nodes were cut in half by my Tykerb/Xeloda!!
 |
Gratuitous Big Man and Little Daisy Shot |
These past six months have been mentally tough because I've been struggling with the new drug side effects while also not even knowing if the drugs were working! Over the past few months, the blood work I would get regularly was showing conflicting news. One week the tumor markers in my blood work would go down, the next they would go back up, the following week one tumor marker would go down and another go up. Until scan time, I was really driving blind. These were difficult pills to swallow not knowing their efficacy! (pun intended)
Now that I know these drugs will work for me, I can more graciously and confidently endure any and all side effects. Bring it on! I can handle it with a smile!
But more importantly, with this fantastic news, I am set free. I am finally able to focus on what matters most in this world- other people. The Bridget Show has taken a hiatus.There are so many beautiful things happening to my friends and family: marriages, babies, houses, jobs. There are also so many tragedies that I'm hearing about. There is so much cancer in this world. Others need my attention now while I can spare it.
I am sick and tired of the Bridget Show. For six years now I've been hogging the spotlight. I've been taking away some of the joy from so many joyous occasions. My friends feel sometimes that they can't complain to me about the trials of their own lives since I have "The Big C" on my plate. In reality, I would give any amount of money to NOT be the center of attention and to lose myself in the stories of others.
These past few weeks have been glorious. I feel as though I've come out of hiding. For the first time in ages I am planning ahead. I am planning life. Things many of you might take for granted seem so brave and liberating for me, like the freedom to book a non-refundable flight to visit Mommy four months from now.
I'm calling friends in high and low places and making plans for visits. I am gossiping, offering advice, listening, and truly being able to listen. My mind is not elsewhere. I am not preoccupied with my own fears.
To that end, I have taken the big scary step of beginning that memoir I've always threatened. I have 50 pages now and I love where it's going. Writing this blog is so very different from taking all of you along on a journey through my past, encouraging the reader to feel what I feel, taste what I taste, see what I see. This blog skims the surface. I share news and thoughts with you. In my memoir, I want you to actually sit in the doctor's waiting room with me. It's different writing and it's difficult emotionally to write, but it is exhiliarating. I realize now I never could have gotten these words on the page, I never could have looked back at the pain of my many diagnoses if all of my energy was focused on the latest set of bad news. This tiny little scan, the words "stable" have set me free. I can't wait to reach my full potential!
To kick off my memoir writing, I enrolled in a memoir writing class at night after work once a week. That class has again opened my eyes to the joys of hearing other people's stories. The woman fighting brain tumors, families with dirty little secrets, thrilling travel-logues, every one of my classmates is more eloquent than the next and every one has a story to tell. Each week we share 10 or 20 pages of our work and we offer critique. We tell our colleagues to "dig deeper here", or "I love this character", "hurry up", "slow down" - it is a beautiful creative experience.
At this class, I have learned yet again the lifelong lesson that every one has a story. Every one of us has a burden that she must carry, and so many of us carry these burdens silently. We put on a wig. We take the cell phone call from our sick mother from a bathroom stall. We tell little white lies to our children. We come to work everyday when life at home is imploding.
I want to carry that knowledge with me everyday in every interaction, and I hope you will keep that in your minds as well. Give the bagger at the grocery store an extra smile, allow the car at the stop sign to turn in front of you, hold the door open, choose your words carefully in every interaction, don't let your hot head or busy schedule cause you to raise your voice or cut corners, because you never know what sort of news the person next to you received today.
I am so thrilled to finally have the wherewithal to listen. Over the years, cancer has turned my heart to stone. My mind and my heart have been slowly numbed over the years. It happened gradually. As cancer dealt me blow, after blow, after blow, I retreated further and further into my own brain and into my own close circle of family and friends. I had room for their feelings and needs, but couldn't quite open myself up to sharing in strangers' pain and stories. If I felt all of your pain while also dealing with my own tragedy, I wouldn't be able to go on. The cold hard reality of life would be too much to bear. These scans have thawed me out and freed me a bit from that prison of my own mind, my own fears and worries.
At my writing workshop, I've seen firsthand that the whole world has been built on sharing stories. The greatest stories of all time, from Hercules to Robin Hood, even all of Shakespeare's great works, were all passed down orally over generations. A story shared can create an overnight sensation in a community, or it can ruin someone in an instant.
This summer I will, of course, still share my journey when it is appropriate or necessary, but I'm done complaining about my side effects for the rest of this summer. This summer, these next few months in between scans are a gift. I want to take advantage of this time to turn my focus outward. I want to share other stories of survival.
I don't need to celebrate this scan with wine and an expensive dinner, or an extravagent purchase. I can celebrate this win in my own fight by focusing on and shining a light upon the plight of my friends and neighbors. After all:
"What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal. ~Albert Pike"
Thursday, May 12, 2011
Call for Nominations
I am finding it hard these days to put Miss Daisy down long enough to write a blog, but for a good and worthy cause, I can find the time to write! I am reaching out to you, my blogger community, today with a very special request that is close to my heart.
Some of you may know, many of you may not know, but in my free time I get a lot of joy from speaking to high school and college students about breast self awareness and my breast cancer journey. I never heard a story like mine before my diagnosis and if I had, I know I would have done things differently. This work, as well as my work with the Susan G. Komen 3-Day for the Cure, has gotten me some incredible recognition over the years, everything from days at Fenway Park to cute clothes and pink coffee mugs to some very humbling awards.
The one award and recognition that has meant the most has come from the incredible Val Skinner Foundation. In 2009, I was honored as a LIFE hero. LIFE stands for LPGA Pros in the Fight to Eradicate Breast Cancer. Every year the organization hosts a golf outing and luncheon where they raise money for the Val Skinner Foundation’s Young Women’s Initiative. This event was a memory I will cherish forever. The LPGA Pros don’t just lend their name, time, and money to this non-profit, these ladies truly give their hearts and souls to the fight. We cried together, we laughed together, we exchanged so many hugs, and I still keep in touch with this incredible group of committed individuals.
To make the event even more memorable, not only was I honored, but during the awards ceremony the organization makes a point of interviewing and honoring the LIFE Heroes’ friends, family, and caregivers. Big Man was interviewed, Mommy was interviewed. It was so touching to see my story and to hear my loved one’s thoughts on my journey and my strength. That wasn’t something I had ever heard before. The event is noted as the biggest single-day golf event fundraiser for breast cancer initiatives, and when I was honored in 2009 it raised $500,000 for breast cancer programs. Since its inception in 2000, LIFE has raised more than $7 million for the fight for against breast cancer!
 |
| Daisy and her LIFE Hero |
To make the event even more memorable, not only was I honored, but during the awards ceremony the organization makes a point of interviewing and honoring the LIFE Heroes’ friends, family, and caregivers. Big Man was interviewed, Mommy was interviewed. It was so touching to see my story and to hear my loved one’s thoughts on my journey and my strength. That wasn’t something I had ever heard before. The event is noted as the biggest single-day golf event fundraiser for breast cancer initiatives, and when I was honored in 2009 it raised $500,000 for breast cancer programs. Since its inception in 2000, LIFE has raised more than $7 million for the fight for against breast cancer!
The money that the Val Skinner Foundation raises is being used for a cause that is so close to my heart - fighting breast cancer and preventing breast cancer in young women. Held at Sebonack Golf Club in Southampton NY June 27th the LIFE Event benefits Susan G. Komen for the Cure® and the Cancer Institute of New Jersey (CINJ). Val Skinner founded LIFE after the loss of her friend and fellow LPGA golfer, Heather Farr, who died of breast cancer in 1993 at the age of 28. The Val Skinner Foundation is the founding sponsor of Komen On the Go™, a mobile breast health education initiative. Bright pink Komen On the Go™ vehicles teach Americans everywhere- at community festivals, public universities, and neighborhood centers - about breast health and empower participants to share information with friends and join the breast cancer movement. In its seven year history, Komen on the Go™ has visited 597 sites with a total audience of 17.5 million people!
The Val Skinner Foundation also opened the LIFE Center in 2002 at the Cancer Institute of New Jersey (CINJ). Young women at risk who visit the LIFE Center at CINJ and its six satellite locations in New Jersey area hospitals are counseled on available medical options to manage their risk and are provided with a management plan tailored to their unique level of risk. In 2008 the LIFE Centers launched a program called BioCONECT, which stands for biology of cancer, on-line education, connecting teens. This science curriculum uses breast cancer as the context and is designed to be integrated into high school biology courses. Through hands-on experiments, role-plays, games and cooperative learning activities, the BioCONECT curriculum provides teachers with innovative methods to address state and national science education standards (improves science skills) while increasing breast cancer awareness.
No other group that I have encountered has ever been more focused on educating and empowering young people to take control of their health. Not a day goes by when I don’t wish I had been more empowered and fought for a mammogram as soon as I felt a lump. I get choked up and excited when I think about the work this event makes possible! What a beautiful tribute to Heather Farr! I can only hope to be half as honored if I should ever lose my battle!
No other group that I have encountered has ever been more focused on educating and empowering young people to take control of their health. Not a day goes by when I don’t wish I had been more empowered and fought for a mammogram as soon as I felt a lump. I get choked up and excited when I think about the work this event makes possible! What a beautiful tribute to Heather Farr! I can only hope to be half as honored if I should ever lose my battle!
Now, this is where all of you come in. Each year, the event honors LIFE Heroes, individuals who have demonstrated courage in the face of breast cancer and purpose in the fight against the disease. Do you know of any young woman who has shown inspirational bravery during her fight? Would you like to honor that special young breast cancer survivor with a special award? If so, I’d love your nominations! I want to share this inspirational day with one of my blog readers. Everyday I receive touching emails and comments from all of you. All of you have stories just as powerful as mine. Everyone of you has faced a battle. All of you are incredibly strong. I am humbled to know you, if only virtually. So please, consider nominating a loved one or even nominate yourself! To submit a nomination, send a one page letter (subject:LIFE Hero) to life4yw@aol.com telling us about the young woman and why she represents a LIFE Hero. Please submit your nominations by Thursday May 19th.
For more information about the LIFE Event or Val Skinner Foundation call 866-882-LIFE or visit www.valskinnerfoundation.org. Please submit a nomination letter! I am so proud of all of you and I want to share your stories with the world and shout them from the roof tops. Together we can cure this!
Friday, March 25, 2011
This is not your fault
I know I often put on a brave face here on this blog, but I'm going to be honest for a moment. This Xeloda and Tykerb drug combo is no joke, my friends. I am struggling these days with feeling old - much older than my 27 years. My Xeloda- Tykerb combo is doing some serious damage to my feet. There is nothing quite like literally hobbling around the house to make one feel like a 90 year-old.
Every girl will agree, a great pair of pumps can make even the most tired girl stand taller, look thinner, and feel beautiful. Sadly, I can't even get my aching, throbbing, red, peeling feet into a pair of flats let alone a pair of pumps! I've taken to watching E! news obsessively for hours. I stare enviously at the beautiful starlets in Christian Louboutins on the red carpet. You never see Angelina Jolie hobbling, or wincing in pain, or even stumbling in her heels. I want to throw my slippers at the tv when the latest hot young thing from Hollywood says "Oh yes, I'm wearing Dior and Jimmy Choo!" You know what? I'm wearing Target Fuzzy Socks, thank you very much.
I think I might buy myself a pair of fabulous pumps as motivation for getting better. How much is too much to spend on shoes? Anyone have a pair of Jimmy Choos they want to lend me? I promise I won't actually wear them, I can't actually wear them, but I will put them in front of my bathroom mirror for a daily dose of motivation. I want to get my old acne-free, pump-wearing self back. Like an alcoholic going to sit in a bar on a Friday night, or a woman on a diet heading to the ice cream store, my nightly dates with E! news are not healthy. Looking at The Beautiful People only makes me feel older. Even though the weather is getting more springlike, I'm still a slave to my very unfashionable UGGs; the sheepskin interior is heaven for my peeling feet. Oh, the joys of breast cancer! Thank you, breast cancer, for making me feel like a slob.
The drug insert that comes with my chemo pills mentions this side effect. They gave it a medical name to make it sound more tame and manageable. They call it "hand/foot syndrome." I haven't yet hit the "hand" part of the syndrome, thank god, but the fire in my feet is making me feel "elderly".
For six years of this battle, I have managed to keep my self-esteem up. I always felt like a young lady. I always felt my age and rarely had self-esteem issues. Even after losing both my breasts and my hair, I always had my spunk, but these past two months have been hard. Between the acne-rash on my face and these burning feet, I fear I am losing my sense of self. Remember that I am a walker. I walk the Susan G. Komen 3-Day for the Cure every year. I also coach other 3-Day walkers and help motivate them to walk 60 miles. I walked 120 miles in back-to-back events, just three days after getting out of the chemo chair. I may not be able to run around the block, but walking was something I was always able to do. It gave me hope. It empowered me in the midst of my treatment. I love walking. What will I do if I can not walk?
From a practical perspective, we live in the city and I walk everywhere: to the library, to church, to the coffee shop, to the grocery store, to the theater, out to dinner. You don't want to move your car in downtown Boston if you can help it! Now, I can't walk from my bed to the kitchen without pain.
This venting of my Xeloda frustrations was going to serve as a very selfish blog post, but last night, as I was folding laundry and Big Man was grading his students' essays, the old husband gave me another topic to discuss. I tried to stand on my tip toes to reach the fabric softener that is stored in a cute little basket on top of our machines. This is an action I have taken millions of times before without even noting it or thinking of it. This time though, the fire in my feet wouldn't let me accomplish my task. Cancer intervened. I couldn't reach. My toes screamed in pain every time they touched the ground.
I asked the Big Man for help and he did what husbands do everyday...he criticized. He expressed an opinion. An unkind, unsolicited opinion. The very worst kind of opinion: a husband's opinion.
The Big Man asked me in a frustrated voice, "Bridget, have you even been USING that Burt's Bees foot cream?"
Yes, as a matter of fact, I have been, thankyouverymuch. I cover my feet and I put them in socks every morning and every night before bed. The smell of the" healing" coconut oil follows me everywhere I go.
I told him as much and Big Jerk replied, "Well, have you been re-applying? I mean, clearly, you haven't been putting it on often enough. You know, you can't just put it on once and expect it to make a difference."
I'm not trying to throw Big Man under the bus here. Well OK, maybe I am, but more than that, I'm trying to make a universal point by sharing this story. The implication that I might be doing something wrong, that I was doing something to cause this pain in my feet, that this side effect was somehow under my control. Well, that implication made me want to throw the fabric softener bottle, open, right into Big Man's handsome, smug face.
Nothing I can do will make this hand-foot syndrome better. The creams I am putting on will help me to cope, but only going off the drug will heal me completely, and going off these drugs is not an option for me right now. Nothing I did caused the hand and foot syndrome. The drugs caused this. I have learned throughout this cancer journey that I will do my very best, anything less is unacceptable, but I will not beat myself up or feel like a failure for being unable to walk to the kitchen. I'm feeling so sick these days that I'm going to be generous and gentle with myself.
My point is: Remember, people, guilt will get you nowhere. None of this is your fault. Let that thought go. Fight that.
That has been the hardest thought to get out of my head since the moment I was diagnosed. My very first thought was, and still is, "What did I do to deserve this? How could I have prevented this? What do I need to do to fix this?"
I put my UGG boots on earlier this week and hobbled my way to the Boston Public Library to pick up the book The Emperor of Maladies. It talks about why cancer is so darn difficult to cure. Cancer is truly the Emperor, the King, of all illnesses. Did you know breast cancer was first mentioned in ancient Egyptian times? And do you know what they did in ancient Egypt to "cure" breast cancer? Well, they cut off the breast and they treated with a potion of herbs.
We've come a long way, baby! That doesn't sound anything at all like what I'm doing!
My point is, cancer is insanely complicated. We need to respect that and to give ourselves a well-deserved break. After decades of research, we are still unable to find the cause, the smoking gun. Instead of a smoking gun situation, cancer develops in a Murphy's Law type of environment. You may have had a genetic predisposition for developing cancer, but that alone is not a cause. You had something in your body that made you prone to it and then Murphy's Law kicked in. You were exposed to something in your environment, or your immune system was compromised, and your body lost its ability to keep the Stage 0 cancer at bay. Somehow, somewhere, something happened that turned those benign, pre-cancerous things into cancer, but that alone was not a cause. It was an unlucky coincidence, a tragic confluence of events. If you had always exercised and followed a vegan diet, you might have decreased your chances of developing cancer, you might have minimized your risk, but the cancer might have developed anyway.
There is no single moment in time that we can point to and say, "That right there, that did it."
So let that question go. Let the guilt go.
You did not cause your cancer.
The side effects of the drugs you are taking are not your fault.
Don't apologize as you lay across the toilet for the inconvenience that you are causing your family.
Don't play into the Big Man's blame game. He is only expressing his own frustration and sadness.
By all means, do your best in this fight. Bring your A Game. Do all that you can, but stop beating yourself up about this. Eat well, not because you want to cure your cancer or because you think that eating well is going to keep you safe from all the scary things that life throws at you. Eat well because eating well makes you feel better. Exercise because it makes you feel good. Slow down and stop stressing because that is a good thing to do.
When I was first diagnosed, I started eating tons of fish. I stopped drinking. I cut out caffeine. I drove my poor father crazy. He turned to my mother after one particularly fish and veggie laden meal and said, "Enough with the salmon with mango salsa and broccoli rabe. Can't I just get a steak and some potatoes?"
It worked for a time. I never felt better and the scans showed that the cancer kept shrinking, and shrinking, and shrinking. Then one day, about 10 months after I started treatment, the scan showed growth. I didn't stop eating well. I cook from scratch at home six nights a week and we eat as much broccoli and spinach and sweet potatoes and anti-oxident rich foods as I can find recipes, but I continued eating well because I felt better when I choose well, not because I thought it would cure me.
The same is true with yoga. About four years ago I was in the best shape of my life. I discovered yoga and I loved it - still do. I was training for two 3-Day events, and when I wasn't walking I was at yoga class. I felt strong and I felt for sure I would beat this disease because I was "in the best shape of my life." And then one day, I got a phone call. They saw a new spot.
I'm not saying that this is hopeless. I most certainly am not asking you to stop exercising or eating right, but I am asking you all to change your perspective and your focus. In this very modern society in which we live, we believe that everything is within our grasp. Everything is under our control. It is very scary to think that maybe, perhaps, we have less control over our lives than we would like to think.
I saw a news report this morning that said going to church increases your risk for cardiovascular disease. How ridiculous a news report! Enough! Enough! Enough! Who was paid to investigate that? Why are we spending money on this wasteful research? Our news reports are so full of mixed messages! Instead of focusing on the cause, can we please focus on the cure?
I'm doing my best. I can do better. But I did not cause this. Can you make that your mantra?
Yes, I should have boozed less in college, but I can't turn back time. Agonizing over every decision I made will only waste precious time. Instead, I'm looking toward the future. I'm looking toward next Tuesday, which is the day I finish this Xeloda regimen and get a glorious week off from the painful drugs. That week I can't wait to head to yoga, take a long walk, and maybe wear a pair of pumps.
I beg all of you to do the same: stop feeling guilty, stop beating yourself up. Learn to give it up to God, and focus on doing your very best.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
I think I might buy myself a pair of fabulous pumps as motivation for getting better. How much is too much to spend on shoes? Anyone have a pair of Jimmy Choos they want to lend me? I promise I won't actually wear them, I can't actually wear them, but I will put them in front of my bathroom mirror for a daily dose of motivation. I want to get my old acne-free, pump-wearing self back. Like an alcoholic going to sit in a bar on a Friday night, or a woman on a diet heading to the ice cream store, my nightly dates with E! news are not healthy. Looking at The Beautiful People only makes me feel older. Even though the weather is getting more springlike, I'm still a slave to my very unfashionable UGGs; the sheepskin interior is heaven for my peeling feet. Oh, the joys of breast cancer! Thank you, breast cancer, for making me feel like a slob.
The drug insert that comes with my chemo pills mentions this side effect. They gave it a medical name to make it sound more tame and manageable. They call it "hand/foot syndrome." I haven't yet hit the "hand" part of the syndrome, thank god, but the fire in my feet is making me feel "elderly".
For six years of this battle, I have managed to keep my self-esteem up. I always felt like a young lady. I always felt my age and rarely had self-esteem issues. Even after losing both my breasts and my hair, I always had my spunk, but these past two months have been hard. Between the acne-rash on my face and these burning feet, I fear I am losing my sense of self. Remember that I am a walker. I walk the Susan G. Komen 3-Day for the Cure every year. I also coach other 3-Day walkers and help motivate them to walk 60 miles. I walked 120 miles in back-to-back events, just three days after getting out of the chemo chair. I may not be able to run around the block, but walking was something I was always able to do. It gave me hope. It empowered me in the midst of my treatment. I love walking. What will I do if I can not walk?
From a practical perspective, we live in the city and I walk everywhere: to the library, to church, to the coffee shop, to the grocery store, to the theater, out to dinner. You don't want to move your car in downtown Boston if you can help it! Now, I can't walk from my bed to the kitchen without pain.
This venting of my Xeloda frustrations was going to serve as a very selfish blog post, but last night, as I was folding laundry and Big Man was grading his students' essays, the old husband gave me another topic to discuss. I tried to stand on my tip toes to reach the fabric softener that is stored in a cute little basket on top of our machines. This is an action I have taken millions of times before without even noting it or thinking of it. This time though, the fire in my feet wouldn't let me accomplish my task. Cancer intervened. I couldn't reach. My toes screamed in pain every time they touched the ground.
I asked the Big Man for help and he did what husbands do everyday...he criticized. He expressed an opinion. An unkind, unsolicited opinion. The very worst kind of opinion: a husband's opinion.
The Big Man asked me in a frustrated voice, "Bridget, have you even been USING that Burt's Bees foot cream?"
Yes, as a matter of fact, I have been, thankyouverymuch. I cover my feet and I put them in socks every morning and every night before bed. The smell of the" healing" coconut oil follows me everywhere I go.
I told him as much and Big Jerk replied, "Well, have you been re-applying? I mean, clearly, you haven't been putting it on often enough. You know, you can't just put it on once and expect it to make a difference."
I'm not trying to throw Big Man under the bus here. Well OK, maybe I am, but more than that, I'm trying to make a universal point by sharing this story. The implication that I might be doing something wrong, that I was doing something to cause this pain in my feet, that this side effect was somehow under my control. Well, that implication made me want to throw the fabric softener bottle, open, right into Big Man's handsome, smug face.
Nothing I can do will make this hand-foot syndrome better. The creams I am putting on will help me to cope, but only going off the drug will heal me completely, and going off these drugs is not an option for me right now. Nothing I did caused the hand and foot syndrome. The drugs caused this. I have learned throughout this cancer journey that I will do my very best, anything less is unacceptable, but I will not beat myself up or feel like a failure for being unable to walk to the kitchen. I'm feeling so sick these days that I'm going to be generous and gentle with myself.
My point is: Remember, people, guilt will get you nowhere. None of this is your fault. Let that thought go. Fight that.
That has been the hardest thought to get out of my head since the moment I was diagnosed. My very first thought was, and still is, "What did I do to deserve this? How could I have prevented this? What do I need to do to fix this?"
I put my UGG boots on earlier this week and hobbled my way to the Boston Public Library to pick up the book The Emperor of Maladies. It talks about why cancer is so darn difficult to cure. Cancer is truly the Emperor, the King, of all illnesses. Did you know breast cancer was first mentioned in ancient Egyptian times? And do you know what they did in ancient Egypt to "cure" breast cancer? Well, they cut off the breast and they treated with a potion of herbs.
We've come a long way, baby! That doesn't sound anything at all like what I'm doing!
My point is, cancer is insanely complicated. We need to respect that and to give ourselves a well-deserved break. After decades of research, we are still unable to find the cause, the smoking gun. Instead of a smoking gun situation, cancer develops in a Murphy's Law type of environment. You may have had a genetic predisposition for developing cancer, but that alone is not a cause. You had something in your body that made you prone to it and then Murphy's Law kicked in. You were exposed to something in your environment, or your immune system was compromised, and your body lost its ability to keep the Stage 0 cancer at bay. Somehow, somewhere, something happened that turned those benign, pre-cancerous things into cancer, but that alone was not a cause. It was an unlucky coincidence, a tragic confluence of events. If you had always exercised and followed a vegan diet, you might have decreased your chances of developing cancer, you might have minimized your risk, but the cancer might have developed anyway.
There is no single moment in time that we can point to and say, "That right there, that did it."
So let that question go. Let the guilt go.
You did not cause your cancer.
The side effects of the drugs you are taking are not your fault.
Don't apologize as you lay across the toilet for the inconvenience that you are causing your family.
Don't play into the Big Man's blame game. He is only expressing his own frustration and sadness.
By all means, do your best in this fight. Bring your A Game. Do all that you can, but stop beating yourself up about this. Eat well, not because you want to cure your cancer or because you think that eating well is going to keep you safe from all the scary things that life throws at you. Eat well because eating well makes you feel better. Exercise because it makes you feel good. Slow down and stop stressing because that is a good thing to do.
When I was first diagnosed, I started eating tons of fish. I stopped drinking. I cut out caffeine. I drove my poor father crazy. He turned to my mother after one particularly fish and veggie laden meal and said, "Enough with the salmon with mango salsa and broccoli rabe. Can't I just get a steak and some potatoes?"
It worked for a time. I never felt better and the scans showed that the cancer kept shrinking, and shrinking, and shrinking. Then one day, about 10 months after I started treatment, the scan showed growth. I didn't stop eating well. I cook from scratch at home six nights a week and we eat as much broccoli and spinach and sweet potatoes and anti-oxident rich foods as I can find recipes, but I continued eating well because I felt better when I choose well, not because I thought it would cure me.
I'm not saying that this is hopeless. I most certainly am not asking you to stop exercising or eating right, but I am asking you all to change your perspective and your focus. In this very modern society in which we live, we believe that everything is within our grasp. Everything is under our control. It is very scary to think that maybe, perhaps, we have less control over our lives than we would like to think.
I saw a news report this morning that said going to church increases your risk for cardiovascular disease. How ridiculous a news report! Enough! Enough! Enough! Who was paid to investigate that? Why are we spending money on this wasteful research? Our news reports are so full of mixed messages! Instead of focusing on the cause, can we please focus on the cure?
I'm doing my best. I can do better. But I did not cause this. Can you make that your mantra?
Yes, I should have boozed less in college, but I can't turn back time. Agonizing over every decision I made will only waste precious time. Instead, I'm looking toward the future. I'm looking toward next Tuesday, which is the day I finish this Xeloda regimen and get a glorious week off from the painful drugs. That week I can't wait to head to yoga, take a long walk, and maybe wear a pair of pumps.
I beg all of you to do the same: stop feeling guilty, stop beating yourself up. Learn to give it up to God, and focus on doing your very best.
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.
--Reinhold Niebuhr
Tuesday, February 1, 2011
Cancer-Meltdown
So the Spence household has had a crazy couple of weeks, but the last three or four days have felt really normal! Last we spoke, I was digesting some awful, awful news and facing some new chemo treatments. First off, thank you so much for the incredible outpouring of support everyone shared via email and comments. To hear so many of you who have had Xeloda experience, it was just what the Big Man and I needed to hear. Entering this new chapter was so much less scary. Thank you!
With all of my readers and supporters by my side, I wasn't afraid of a single thing... until....
Saturday January 15th, I was one week into my new Tykerb regimen. The Good Doctor started me on Tykerb alone because I have my Swap Surgery scheduled in February. My swap surgery, for my non-cancer friends, is my final reconstructive surgery. My plastic surgeon opens up my old mastectomy scars, removes my tissue expanders, and puts in my permanent implants. While it may seem crazy to have a surgery in the midst of new chemo, the expanders are uncomfortable and I have been asking to have them removed for about five months now. Nothing is standing in between me and Swap Surgery. Come hell or high water, these things are coming out February 9th! The doctors wanted to hold off on giving me the full dose of my treatment until about a week after surgery because we don't want to compromise the ol' immune system.
So the point is, on Saturday January 15th, I am not afraid or worried at all. I have my biggest pair of Big Girl Pants on and I am being a brave little girl. Life is good. For now, I only have to take 5 pills a day as opposed to 11. The 5 I have to take aren't even chemo, they are "targetted therapy." Thousands of women have handled this very same regimen with no problem. I have the support of my family, friends, and blogger buddies. This whole Stage IV cancer thing is a bummer, but really its a cake walk. I was getting ready to blog about just how easy this whole new cancer chapter was shaping up to be.
It was Saturday night and I was in the bathroom preparing for a nice dinner out with the hubby and my in-laws. Earlier that week was when I first noticed a little breakout on my face. Not attractive. I looked like a prime candidate for one of those Proactive commercials.
By Friday, the breakout had extended to my fake chest. Not attractive, but still not cause for alarm. I had maybe 15 small zits. Nothing that a heavy dose of foundation and a turtleneck couldn't remedy.
But that Saturday evening, January 15th, the rash started growing a rash of it's very own. I had hives on my back. I had hives on my bottom. I had hives on my scalp.
I itched. And when I itched my itch, the itch hurt. When the itch hurt I put on this soothing ointment my doctor prescribed. But to put on the ointment, I had to look in the mirror, and every time I looked in the mirror, I didn't see the allergic reaction for what it was. Instead, I saw Cancer staring me right in the face. I saw Cancer all over me like "stink on a skunk," as my grandmother would say.
My mind was going crazy focusing on these hives and on this cancer. For once I felt truly "stricken" with cancer.
I had it in my mind that the only thing that would make the itching stop was a nice, warm bath. I had visions of Mommy drawing an oatmeal bath when my baby brother and I both had chicken pox the same week. The vision of a homemade remedy empowered me. If I could just draw a bath, this whole rash situation would clear right up. Oatmeal would easily conquer a powerful chemo drug! I had my oatmeal in hand and was ready to take a long bath before my in-laws arrived. The Oatmeal would fix everything just in time for their arrival. I had two hours. Plenty of time.
I had visions of me opening the door wearing my best cashmere turtleneck sweater and a smile. I would hide the rash on my face with multiple layers of perfectly applied foundation. I would hand them a nice glass of Cabernet. I would have white wine and beer chilled. A tray of fine cheese would be waiting on the coffee table. Candles would be burning. Jazz music would be playing in the background. Our Christmas decorations were still up. "Please, come in! Yes, mother-in-law, see how well your son chose? I am taking care of him. Cancer? What do you mean cancer? Cancer hasn't got me down! No way, no how. I'm taking care of him ya see? He isn't a caregiver! Who needs a caregiver?" I was going to be like a duck when I opened the door for the in-laws, calm on top but paddling like the dickens underneath.
And then, I turned on the bath and found to my dismay....
We were out of hot water.
No big deal, perhaps a slightly chilly bath would be just fine for my hives.
No, an ice cold bath actually makes the hives worse. It turned on every nerve in my entire body.
That was when the crazy came out.
In an attempt to "help" in my time of need, the Big Man had apparently thrown in a load of laundry and had also loaded the dishwasher inadvertently draining our condo of hot water. In a normal state, I would thank the Big Man for helping me clean up before his parents' arrival. I should have just shrugged my shoulders at the inconvenience of not being able to prep appropriately for their arrival, but I was not in a normal state of mind. The hives were talking here.
In one of those blind rages that happen when you are frustrated and need to lash out, you can only lash out at the people you love the most because those are the people who won't ever leave you. I flew into a rage and cursed the Big Man and his helpfulness.
How dare he do the laundry!
How thoughtless of him to reload the dishwasher!
Doesn't he know that I run the show around here?
Doesn't he know I need a tub full of warm water!
Now it will be an hour before the water's warm again, and his parents are coming.
Your parents are coming!
What am I going to do?
IT ITCHES!
The wheels came off. I cried. I screamed. I threw some pillows around. I may have thrown other things, I can't remember.
My in-laws did come, God love them, in the middle of this whole fiasco. I was running around in my robe (the only piece of clothing that didn't itch) and screaming bloody murder about:
our stupid water heater needs to be replaced. Maybe tonight. You think a plumber can come tonight?
Why on earth did we buy this hole in the wall condo in the first place? Huh?
YOU, Big Man, YOU were the one who first came to the stupid Open House.
YOU were the one who found this condo and it's stupid broken water heater.
We never should have bought this place.
What a waste!
Nice job you house-buying, laundry and dish-cleaning, worthless excuse for a husband!
YOU!
Needless to say, I looked not at all like a duck, I was nowhere close to looking like Martha Stewart. Jazz was not playing in the background. Cheese was not out on the coffee table. Frankly, if I had greeted the in-laws at the door with a glass of wine, it would have made me look even worse! With a glass of wine in my hand, they could have confused my hive-induced rage with the ravings of a drunk!
I looked not at all like a duck. I looked not at all like Martha Stewart. I looked instead like one of those Real Housewives. The ones who scream nonsense obscenenities at anything that moves for no real clear reason.
It was an ugly day in the Spence household, and I'm not talking about the zits on my face.
It was a good thing the in-laws showed up when they did. Even though I wanted to crawl into the hardwood floor and die of embarrassment right then and there, their arrival calmed me down long enough to catch my breath and allowed the Big Family to actually talk through the situation in a somewhat civilized manner.
Big Man suggested I call the doctor to see if we couldn't stop taking the Tykerb and get some stronger treatment for the hives. I refused. No way in hell was I going to call my doctor! What a crazy idea! It was a Saturday afternoon and Dr. P is a married woman with three little girls at home. How could the Big Man not realize this? I monopolize her time enough during the week. No way was I interrupting what was surely a beautiful Saturday with the family. I was going to wait this out until 9am on Monday!
I was being such a typical woman, or maybe I was just being exactly like my mother? My mother never wants to bother anyone. It is one of her most admirable, but also most infuriating qualities. Why are we so reluctant to ask for help? Are we confusing this trait with actual strength? In this case, my "strength" was more like stupidity.
Big Man ended up paging the doctor. He ripped the phone out of my shaking, hive covered hands and paged her.
Turns out, Dr. P was at the hospital doing rounds anyway. She said it was a pleasure to hear from me because she was wondering how I had been doing on the new treatment. When she heard about the hives arrival, she was mad I hadn't called sooner because apparently they "get worse before they get better." I was in for a long week. She told me to stop the Tykerb immediately. She faxed a strong antibiotic order to my pharmacy. She told me not to take a bath, I would only make the hives worse. So much for my oatmeal bath that had started this whole rampage.
To say I had a tail between my hive covered legs is an understatement.
Big Man had never been prouder of himself! Big Man was right, I was wrong. You heard it here first. I'm saying it publicly. He can save this blog post and refer to it forty years from now if the Real Housewives-style crazy ever makes another appearance in his house.
Two weeks worth of antibiotics later, the antibiotics are working wonders. I can take the Tykerb now and I don't break out anymore. I am feeling much more confident about this treatment plan.
More importantly,my face is my own again. I am no longer ashamed to leave the house, although I'm still wearing cashmere turtlenecks (but only because it's winter in Boston.) I no longer think of cancer every time I catch a glimpse of my reflection.
The wheels are back on. The train that is Bridget Kicking Cancer Butt shall continue
Although, I will never live down the in-law embarrassment and I promise my in-laws a more civilized visit next time (and every time thereafter).
Last night was our typical Sunday dinner of roast chicken and "60 Minutes," Big Man poured himself a glass of wine and smiled at me as I was sitting down to the dinner table. He said, "You look pretty. You look like yourself. We're so lucky. I'm so lucky. I love you, Little"
Wow, what a difference a week makes!
And even bigger wow:
Wow, I'm a lucky woman!
Please, kind reader, tell me: Has anyone else had a Cancer-meltdown? I hope I'm not the only person who has allowed Cancer to make her a little ugly to the ones she loves, if only for a moment?
With all of my readers and supporters by my side, I wasn't afraid of a single thing... until....
Saturday January 15th, I was one week into my new Tykerb regimen. The Good Doctor started me on Tykerb alone because I have my Swap Surgery scheduled in February. My swap surgery, for my non-cancer friends, is my final reconstructive surgery. My plastic surgeon opens up my old mastectomy scars, removes my tissue expanders, and puts in my permanent implants. While it may seem crazy to have a surgery in the midst of new chemo, the expanders are uncomfortable and I have been asking to have them removed for about five months now. Nothing is standing in between me and Swap Surgery. Come hell or high water, these things are coming out February 9th! The doctors wanted to hold off on giving me the full dose of my treatment until about a week after surgery because we don't want to compromise the ol' immune system.
So the point is, on Saturday January 15th, I am not afraid or worried at all. I have my biggest pair of Big Girl Pants on and I am being a brave little girl. Life is good. For now, I only have to take 5 pills a day as opposed to 11. The 5 I have to take aren't even chemo, they are "targetted therapy." Thousands of women have handled this very same regimen with no problem. I have the support of my family, friends, and blogger buddies. This whole Stage IV cancer thing is a bummer, but really its a cake walk. I was getting ready to blog about just how easy this whole new cancer chapter was shaping up to be.
It was Saturday night and I was in the bathroom preparing for a nice dinner out with the hubby and my in-laws. Earlier that week was when I first noticed a little breakout on my face. Not attractive. I looked like a prime candidate for one of those Proactive commercials.
By Friday, the breakout had extended to my fake chest. Not attractive, but still not cause for alarm. I had maybe 15 small zits. Nothing that a heavy dose of foundation and a turtleneck couldn't remedy.
But that Saturday evening, January 15th, the rash started growing a rash of it's very own. I had hives on my back. I had hives on my bottom. I had hives on my scalp.
I itched. And when I itched my itch, the itch hurt. When the itch hurt I put on this soothing ointment my doctor prescribed. But to put on the ointment, I had to look in the mirror, and every time I looked in the mirror, I didn't see the allergic reaction for what it was. Instead, I saw Cancer staring me right in the face. I saw Cancer all over me like "stink on a skunk," as my grandmother would say.
My mind was going crazy focusing on these hives and on this cancer. For once I felt truly "stricken" with cancer.
I had it in my mind that the only thing that would make the itching stop was a nice, warm bath. I had visions of Mommy drawing an oatmeal bath when my baby brother and I both had chicken pox the same week. The vision of a homemade remedy empowered me. If I could just draw a bath, this whole rash situation would clear right up. Oatmeal would easily conquer a powerful chemo drug! I had my oatmeal in hand and was ready to take a long bath before my in-laws arrived. The Oatmeal would fix everything just in time for their arrival. I had two hours. Plenty of time.
I had visions of me opening the door wearing my best cashmere turtleneck sweater and a smile. I would hide the rash on my face with multiple layers of perfectly applied foundation. I would hand them a nice glass of Cabernet. I would have white wine and beer chilled. A tray of fine cheese would be waiting on the coffee table. Candles would be burning. Jazz music would be playing in the background. Our Christmas decorations were still up. "Please, come in! Yes, mother-in-law, see how well your son chose? I am taking care of him. Cancer? What do you mean cancer? Cancer hasn't got me down! No way, no how. I'm taking care of him ya see? He isn't a caregiver! Who needs a caregiver?" I was going to be like a duck when I opened the door for the in-laws, calm on top but paddling like the dickens underneath.
And then, I turned on the bath and found to my dismay....
We were out of hot water.
No big deal, perhaps a slightly chilly bath would be just fine for my hives.
No, an ice cold bath actually makes the hives worse. It turned on every nerve in my entire body.
That was when the crazy came out.
In an attempt to "help" in my time of need, the Big Man had apparently thrown in a load of laundry and had also loaded the dishwasher inadvertently draining our condo of hot water. In a normal state, I would thank the Big Man for helping me clean up before his parents' arrival. I should have just shrugged my shoulders at the inconvenience of not being able to prep appropriately for their arrival, but I was not in a normal state of mind. The hives were talking here.
In one of those blind rages that happen when you are frustrated and need to lash out, you can only lash out at the people you love the most because those are the people who won't ever leave you. I flew into a rage and cursed the Big Man and his helpfulness.
How dare he do the laundry!
How thoughtless of him to reload the dishwasher!
Doesn't he know that I run the show around here?
Doesn't he know I need a tub full of warm water!
Now it will be an hour before the water's warm again, and his parents are coming.
Your parents are coming!
What am I going to do?
IT ITCHES!
The wheels came off. I cried. I screamed. I threw some pillows around. I may have thrown other things, I can't remember.
My in-laws did come, God love them, in the middle of this whole fiasco. I was running around in my robe (the only piece of clothing that didn't itch) and screaming bloody murder about:
our stupid water heater needs to be replaced. Maybe tonight. You think a plumber can come tonight?
Why on earth did we buy this hole in the wall condo in the first place? Huh?
YOU, Big Man, YOU were the one who first came to the stupid Open House.
YOU were the one who found this condo and it's stupid broken water heater.
We never should have bought this place.
What a waste!
Nice job you house-buying, laundry and dish-cleaning, worthless excuse for a husband!
YOU!
 |
| It was a Kelly Bensimon in the Virgin Islands kind of a night! |
I looked not at all like a duck. I looked not at all like Martha Stewart. I looked instead like one of those Real Housewives. The ones who scream nonsense obscenenities at anything that moves for no real clear reason.
It was an ugly day in the Spence household, and I'm not talking about the zits on my face.
It was a good thing the in-laws showed up when they did. Even though I wanted to crawl into the hardwood floor and die of embarrassment right then and there, their arrival calmed me down long enough to catch my breath and allowed the Big Family to actually talk through the situation in a somewhat civilized manner.
Big Man suggested I call the doctor to see if we couldn't stop taking the Tykerb and get some stronger treatment for the hives. I refused. No way in hell was I going to call my doctor! What a crazy idea! It was a Saturday afternoon and Dr. P is a married woman with three little girls at home. How could the Big Man not realize this? I monopolize her time enough during the week. No way was I interrupting what was surely a beautiful Saturday with the family. I was going to wait this out until 9am on Monday!
I was being such a typical woman, or maybe I was just being exactly like my mother? My mother never wants to bother anyone. It is one of her most admirable, but also most infuriating qualities. Why are we so reluctant to ask for help? Are we confusing this trait with actual strength? In this case, my "strength" was more like stupidity.
Big Man ended up paging the doctor. He ripped the phone out of my shaking, hive covered hands and paged her.
Turns out, Dr. P was at the hospital doing rounds anyway. She said it was a pleasure to hear from me because she was wondering how I had been doing on the new treatment. When she heard about the hives arrival, she was mad I hadn't called sooner because apparently they "get worse before they get better." I was in for a long week. She told me to stop the Tykerb immediately. She faxed a strong antibiotic order to my pharmacy. She told me not to take a bath, I would only make the hives worse. So much for my oatmeal bath that had started this whole rampage.
To say I had a tail between my hive covered legs is an understatement.
Big Man had never been prouder of himself! Big Man was right, I was wrong. You heard it here first. I'm saying it publicly. He can save this blog post and refer to it forty years from now if the Real Housewives-style crazy ever makes another appearance in his house.
Two weeks worth of antibiotics later, the antibiotics are working wonders. I can take the Tykerb now and I don't break out anymore. I am feeling much more confident about this treatment plan.
More importantly,my face is my own again. I am no longer ashamed to leave the house, although I'm still wearing cashmere turtlenecks (but only because it's winter in Boston.) I no longer think of cancer every time I catch a glimpse of my reflection.
The wheels are back on. The train that is Bridget Kicking Cancer Butt shall continue
Although, I will never live down the in-law embarrassment and I promise my in-laws a more civilized visit next time (and every time thereafter).
Last night was our typical Sunday dinner of roast chicken and "60 Minutes," Big Man poured himself a glass of wine and smiled at me as I was sitting down to the dinner table. He said, "You look pretty. You look like yourself. We're so lucky. I'm so lucky. I love you, Little"
Wow, what a difference a week makes!
And even bigger wow:
Wow, I'm a lucky woman!
Please, kind reader, tell me: Has anyone else had a Cancer-meltdown? I hope I'm not the only person who has allowed Cancer to make her a little ugly to the ones she loves, if only for a moment?
Sunday, January 9, 2011
Scan Results
I knew something was wrong when my doctor came in and noticed my haircut. She was thrilled with the cut, but seemed uncomfortable gushing. She wanted to set a tone for the meeting and my smiling face and desire to be young, happy, and looking forward to a new year was something she was about to crush.
"We have good news and bad news."
My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.
My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.
The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.
This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.
I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.
My doctor paused to let this news sink in before weighing in with her opinion.
"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"
I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.
But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?
Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?
Just like with a bad breakup I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.
And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"
Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda.
In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.
My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.
Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.
How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.
If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.
Regardless of cancer's intentions, I am adamant that I will continue to live the life I have made for myself. I will witness my best friend walking down the aisle. I will visit the beach with Mamma and Company this summer. I will write a book. Big Man and I are season ticket holders to our local theater and I am seeing every single show and having a pre-theater dinner to boot, even if I do feel a little 'funny.' Big Man and I want to take a trip to Wimbledon some summer soon, he's a tennis player whose never been to London, one of my favorite cities in the world that I can't wait to share with the man I love.
Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.
As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."
I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.
Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.
This cancer might scare me, but I am going to stand my ground.
The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.
I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.
My strength and fortitude, my gift of gab. Big Man's ability to make me laugh when I feel instead like crying, Big Man's kind eyes and even kinder heart. Those are the gifts we symbolically received at our baptisms. Those very qualities that get us through cancer and help us to actually grow with it. We don't remember baptism, but our souls remember.
God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.
So, here we go, carrying on!
"We have good news and bad news."
My stomach sank, not to my toes, but all the way down the nine floors into the hospital lobby. Mamma grabbed my hand and clutched so hard it hurt, but I didn't dare pull away.
My latest scans showed that the tumors in my liver were stable. Not shrinking, but we were given the gift of stable. That was the good news.
The bad news was two-fold. The scans picked up on a new tumor: a dark spot in a lymph node in my abdomen, behind my liver, next to the celiac artery. Also, my tumor markers had increased markedly. Tumor markers, for my readers in the non-cancer world, are substances that cancer cells produce that can be measured in a blood test. When there is an increase in these substances in my blood, it is an indication of increased cancer cells in my body.
This new tumor and my tumor marker levels meant that I had stopped responding to the TDM1. I was removed from the clinical trial. I can no longer receive my precious silver bullet. Somewhere in the distance as I stared blankly out the 9th floor window, I heard a heavy door slamming shut. I could see my "case" being added to the clinical trial outcomes. My seven months before "disease progression," dragging down the drug's success. My performance dragging down every other patients' average.
I pictured somewhere, perhaps in another room in this very hospital, another metastatic patient was hugging her husband with joy, not fear, as she learned that there is a newly open spot on the TDM1 clinical trial. I probably know this patient. A dark part of me was struggling with my burning jealousy.
My doctor paused to let this news sink in before weighing in with her opinion.
"Bridget, we are disappointed. We are very disappointed. I know everyone in this room hoped that you would be on TDM1 longer, but you have to realize that, from a clinical perspective, this trial was a success. You are in a better place vis a vis your liver now than you were in May. Your liver lesions shrunk 22%. This is a success, and tumors in your lymph nodes, while hearing that is certainly scary, those are not vital organs. Better the lymph node than the liver or another vital organ. We are disappointed, but I am not worried about you. OK?"
I know my doctor is right. I find comfort in her words, and I relish her confidence. My doctor has confidence in me and in my chances.
But I also struggle with other facts. With every drug that is taken away, with every drug removed from my "arsenal," I get closer to running out. I am scared. I am angry at myself for not doing better. Was it something I ate? Too much red meat? Too much red wine? Too much stress? Late nights? Not enough exercise?
Over the past few days, as I have digested this news, I have felt like a spurned lover. I am recovering from a horrible break up. I thought TDM1 was "The One." I had visions of babies and suburban homes and years of happiness. When I was sent home on Wednesday without my scheduled infusion, I cried. I felt hit in the gut. I felt like a woman feels when she stares desperately at the phone and begs it to ring. When she picks up to make sure there's a dial tone. When she calls and hangs up without leaving a message and then yells at herself. Why can't I have him? I miss him! He was perfect! It all seemed to be going so well! What happened?
Just like with a bad breakup I have to learn, "It's not you, it's me." There was nothing I could have done to prevent this. My cancer simply figured out TDM1's weakness too quickly. It found a detour to continue along its path of destruction. My cancer has some sort of as-yet undiscovered personality trait that makes TDM1 less than ideal.
And, just like my single girlfriends everywhere, I have to take a deep breath and say, "On to the next!"
Although I've been on 11 different drugs since 2005, and that might not seem "early" in the cancer journey, my doctor assures me I was actually able to grab a spot on this TDM1 clinical trial a little "earlier" than the other patients. Unlike many members of the trial who had exhausted all other standard therapies, I still have, according to Doc, many standard therapies still available to try. So now, we will try a standard therapy first approved by the FDA in 2007, the targeted therapy Tykerb with the chemotherapy Xeloda.
In 2007, a clinical trial found that Tykerb plus Xeloda given to HER2+ metastatic patients who had progressed on other treatment regimens, gave patients 27 weeks without disease progression versus 18 weeks for Xeloda alone. While 8 months without another progression is certainly not a cure, some patients on Xeloda and Tykerb did see their cancers disappear and have been on the drug for several years. The 8 months is an average. We are entering an age of individualized treatment for breast cancer, my treatment over the last six years has certainly been individualized, and I am hoping to be one of those 'no evidence of disease' recipients of this drug cocktail. I am hoping that this combo will be "The One" for me.
My new drug regimen is all pills. I no longer have to visit the infusion room, which is fantastic, but also feels a little funny. I've gone to infusion every three weeks for the past six years. I feel like my nurses should have some sort of going away party. I know every receptionist, nurse, and clinical assistant. I know their kids' names. I know their upcoming wedding dates. Infusion was a social occasion for me, and those nurses answered a lot of my questions and laid to rest a lot of my concerns. They brought me warm blankets and sandwiches and drinks. They took care of me. They were caregivers. Missing infusion also feels a little like a break up. I know that this could be a great thing; it will just take some getting used to.
Instead of monthly infusions, I will be taking 11 pills every day. Talk about picking your poison! I've already started taking the Tykerb and I'm feeling....funny. I have problems with nausea and I just don't feel quite right, but I figure I can handle funny. We shall see what the Xeloda brings.
How am I doing? I am still digesting this news. I am torn. I have dual personalities here. I feel yet again like I am trying desperately to hold onto my life, grasping at straws, and I am concerned about the continued bad news we've been receiving over the past two years, but cancer can wreak havoc on my body, but it cannot take my soul.
If I've learned nothing in this cancer journey, I've learned that every cancer has a personality. My cancer has multiple personalities: when it dies, it dies quickly, but when it grows, it grows just as fast. This beast struck fear in my heart this week. In just nine weeks the news turned from "shrinking, shrinking, shrinking!" to growing. For cancer to turn on a dime, for a whole new tumor to appear in nine weeks....
This beast doesn't just die and stay dead. It has got a hold on my body and it will not go quietly into that dark night.
 |
| We have more dancing in the kitchen to do! |
Let me be clear, though. We do not have a bucket list! I don't like the phrase bucket list. I might be aware and prepared for death, but I am certainly not racing toward the finish line while checking things off. Instead, I see the plans I've made as physical evidence of my fight. The battlefield is at the tissue level down in my belly, but I find symbolism from my actions every day.
As I'm swallowing the last five pills of my day, I smile with the realization that this is a physical act. "Take That!" I smile picturing the cancer cells running for the hills as the pill slowly dissolves. Like roaches scattering when you turn on a light. In the same way, if I were to get on a plane for London tomorrow, I would look out the window and say, "Not today, Cancer. Today, I am living!" After getting home from a fantastic party or double date, I think to myself as I kiss Big Man goodnight, "I am alive today."
I feel like, when the end comes, I'll know it. I have seen my grandmothers grow old. Dying from cancer is not like falling over from a heart attack or getting hit by a bus. It is a slow progression like the progression of old age. You slow down. Your plans get a little smaller and closer to home.
Hiking in the White Mountains this summer, crossing the finish line of the 3-Day this fall, planning babies and houses with Big Man at Christmas, yoga classes, dramatic hair cuts, I have very broad and ever broadening horizons. I have big plans.
This cancer might scare me, but I am going to stand my ground.
The Big Man and I went to church together today and left at peace with this news. At peace, but still clinging to one another. We can't seem to hold each other close enough, even while in church. Brushing elbows turns into me slipping my arm through his elbow and Big Man pulling me close. Brushing fingers turns into hand holding. One hand turns to both hands intertwined.
I laid my head on Big Man's shoulder today as Father John talked about the Feast of the Baptism of Our Lord. Father John argued that, while the babies who are welcomed into our church every weekend will certainly not remember their baptism, baptism is the most important sacrament. Symbolically, it is during baptism when God enters our world and makes His mark on our souls. We are His adopted children. He does not give us our eye or hair color, but He has given us all of our best qualities.
 |
| God gave me the Big Man |
God didn't give me cancer, but He gave me the tools I need to beat it and to carry on.
So, here we go, carrying on!
Wednesday, October 27, 2010
Victory!
I hope my blog silence hasn't led you to believe that I dropped dead during my 60 mile walk! Far from it, in fact. The Big Man and I walked every step together. We crossed the finish hand in hand. We are victorious!
I am not sure how to sum up our 3-Day for the Cure weekend in a way that will do it justice. All I can say is that, over the course of those 60 miles, Alex and I fell in love all over again.
You see, the Big Man and I had only been dating about six months before my diagnosis back in 2005. We were still getting to know one another and then this huge cancer thing was thrown into our laps. Over the past six years, we have done a little dance when it comes to my cancer. I want him to be involved, but I also want to be independent. We want to communicate about complicated emotional issues and we don't quite know how. He wants to get involved and help, but at the end of the day, this cancer journey is mine.
The most difficult step to learn in this cancer dance has been that my man wants to make it all better and take the pain away. We are learning that is impossible. Every day is a new chapter in our relationship. Every day is a learning experience. It can be beautiful, but it is so hard.
The 2010 Susan G. Komen DC 3-Day for the Cure was the high point of our relationship, the culmination of all our hard work. We embarked on the journey still doing our little "figuring this all out" dance, but we left totally in sync. It could have gone either way. I was so nervous that he would hate the walk or wouldn't get the emotion behind it. I should have had more faith in my man's heart. I should have had more faith in how he understands my struggle and appreciated more that he is dealing with a struggle all his own. He may not come to every appointment because there are simply too many, but he feels deeply every ache, pain and every set back.
Each day we were both pleasantly surprised at how much we enjoyed walking and talking together and we were shocked that we could laugh until we cried and come up with brand new nicknames for one another. Our team, The Million Dollar Babies, was perfect. The perfect amount of support and encouragement and comic relief, and it was a large team so that we could have our own private journey as a couple, but we were never ever alone.
As we walked across the finish, Alex looked at me and smiled and said, "Congratulations, Little One." Next to the words, "I Do," that was the sweetest phrase I've ever heard. Alex was proud of me. I was proud of him. We were both in incredible pain!
When we left the 3-Day Sunday night we were no longer those two people traveling the same difficult road. Instead, we left as one person looking forward confidently toward the future.
They say a picture is worth a thousand words, so, without further ado:
The Big Man and Big Girl 3-Day for the Cure journey
music courtesy of Ingrid Michaelson: "Soldier." Everybody. 2009.
I am not sure how to sum up our 3-Day for the Cure weekend in a way that will do it justice. All I can say is that, over the course of those 60 miles, Alex and I fell in love all over again.
You see, the Big Man and I had only been dating about six months before my diagnosis back in 2005. We were still getting to know one another and then this huge cancer thing was thrown into our laps. Over the past six years, we have done a little dance when it comes to my cancer. I want him to be involved, but I also want to be independent. We want to communicate about complicated emotional issues and we don't quite know how. He wants to get involved and help, but at the end of the day, this cancer journey is mine.
The most difficult step to learn in this cancer dance has been that my man wants to make it all better and take the pain away. We are learning that is impossible. Every day is a new chapter in our relationship. Every day is a learning experience. It can be beautiful, but it is so hard.
The 2010 Susan G. Komen DC 3-Day for the Cure was the high point of our relationship, the culmination of all our hard work. We embarked on the journey still doing our little "figuring this all out" dance, but we left totally in sync. It could have gone either way. I was so nervous that he would hate the walk or wouldn't get the emotion behind it. I should have had more faith in my man's heart. I should have had more faith in how he understands my struggle and appreciated more that he is dealing with a struggle all his own. He may not come to every appointment because there are simply too many, but he feels deeply every ache, pain and every set back.
Each day we were both pleasantly surprised at how much we enjoyed walking and talking together and we were shocked that we could laugh until we cried and come up with brand new nicknames for one another. Our team, The Million Dollar Babies, was perfect. The perfect amount of support and encouragement and comic relief, and it was a large team so that we could have our own private journey as a couple, but we were never ever alone.
As we walked across the finish, Alex looked at me and smiled and said, "Congratulations, Little One." Next to the words, "I Do," that was the sweetest phrase I've ever heard. Alex was proud of me. I was proud of him. We were both in incredible pain!
When we left the 3-Day Sunday night we were no longer those two people traveling the same difficult road. Instead, we left as one person looking forward confidently toward the future.
They say a picture is worth a thousand words, so, without further ado:
The Big Man and Big Girl 3-Day for the Cure journey
music courtesy of Ingrid Michaelson: "Soldier." Everybody. 2009.
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