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 coping. Show all posts
Showing posts with label coping. Show all posts
Tuesday, August 28, 2012
Thursday, March 29, 2012
Negotiating With The Big Man
Several times along the course of my breast cancer journey, I've had to plead, cry, and negotiate with The Big Man, and this time when I mention The Big Man, I'm talking about God. I'm happy to say that, while there have been times when His answers to my prayers have been difficult to understand, I can say confidently that He has heard and granted my wishes time and time again. I realize that making it seven years with Stage IV Her2+ breast cancer is a miracle in itself. My presence here today is living, breathing proof of God's answered prayers. And yet, even though The Big Man Upstairs continues to answer my prayers, I always want more.
This week, I received tumor marker test results and found that my tumor markers are rising, again.
I was never a patient who hung her hat on tumor markers. I wanted always to look at the bigger picture and didn't want a weekly or monthly reminder of my battle. Instead, for six years, I was happy with making a plan and sticking to it for three months at a time. I was happy that every three months I could steel myself for the unknown. I lived every three months happily and trying to maintain as much normalcy as I could. Then, once every three months, four times a year, I would hold hands with My Big Man, ask Mom to fly into town for support. Together we could look cancer square in the face, get my scan results, and come up with a new gameplan.
This year, though, my world turned upside down in October. My doctor told me the cancer had control of my body, and what was once a cancer contained in my liver had blossomed into spots in my lungs, bones, and throughout my lymph nodes. I started contemplating death, and not death someday, but death soon. I started contemplating leaving my job that gave me so much strength, support, camraderie, a sense of normalcy, a sense of accomplishment, and a sense of purpose. I changed all of my passwords and wrote them down for easy access. I finally sorted through our file folders and organized paperwork, threw out seven year old documents and bills, and cleaned house in case Big Man had to take over the running of the household. I actually wrote down and printed out and put in a folder labeled "Legal Documents" instructions in the case of my death. I imagined my funeral. I read Bible passages. I listened to hymns. I cried, but I also felt a sense of control and peace.
And then my tumor markers started falling. The Taxol and Herceptin combo started working, and week after week I started taking notice of my tumor markers for the first time. By December, my tumor markers fell from 965 to only 75. I started rooting for my tumor markers. I started getting hope and inspiration from those test results. I realize now I also started hanging my hopes on that test result. Now that my tumor markers are rising, I'm not finding hope in my day-to-day accomplishments as much as before. Rather than making my three month leases on life count, I'm getting dejected with every passing blood test. The cancer is suddenly taking over my mind and my mood.
My whole family, also, has started asking, "Did you get results yet? What are your markers doing? What does this mean?" My family shares my pain when the results are poor. And now, without intending that, we are sad and defeated by the cancer on a weekly and monthly basis rather than every three months. Cancer is controlling more of our lives.
The doctors do not react to every test result. We do not make major treatment decisions based on a handful of bad blood tests because it takes a long time for trends on a cellular and blood level to actually translate into changes at the tumor level. It takes a long time for tumor markers to add up to actual, measurable tumor growth. So we were, in essence, getting very upset and worked up about results that were not going to impact my day-to-day treatment decisions in the slightest. These tumor markers were fabulous tools for encouragement when things were going our way, but now they are simply a hindrance.
This last week, my tumor markers rose to 312. I am upset. I am scared. My mind is wandering to sad, dark places. My Big Man and I cuddled together in silence after the results came back. Until Big Man broke that silence by stroking my bald head, looking down at my face resting on his chest and saying "You can't go anywhere. It's as simple as that. You aren't allowed to leave me. I can't handle that. So there."
And I decided to make the same "So there" statement. I will not allow these tumor marker tests to rule my life. I will not speak of them again on this blog. Instead, I will only get upset and nervous and scared every three months at scan time. Scans are coming up again on April 11th, so I suppose this is an easy promise to make for now. We will see in April and May if I can regain control and perspective. Can I go back to focusing on the bigger picture? I have made three month long goals for myself and my family before. I am going to make these same sort of goals now.
In October, I had a negotiation with God. I asked, and prayed, and begged that he please let me live to see my baby niece born.
My sister-in-law is due on April 6th. God has granted me that wish. God has answered my prayers. I am sure that on April 6th, as I watch a new, perfect life emerge before my eyes and as I become an Aunt for the first time, I'm sure I will have another negotiation with God. I'm sure I will pray that he let me see this beautiful child grow up. I know I will pray that He gives me the chance to share in her life. I want her to know me. I want her to love me. I want to hear her say my name. I want to see My Big Man hold her. I want to see my Big Man fall in love with her. I want to see my Big Man turn to me with a smile and imagine me as the Mommy.
Instead, I should simply sit back and enjoy that one day. I have to take a deep breath and remember my favorite excerpt from Matthew 6:
Surely life is more than food, and the body more than clothing!
…Can any of you, however much you worry, add one single cubit to your span of life?
And why worry about clothing?
Think of the flowers growing in the fields; they never have to work or spin;
Yet I assure you that not even Solomon in all his royal robes was clothed like one of these.
Now if that is how God clothes the wild flowers growing in the field…
Will he not much more look after you, you who have so little faith?
Your heavenly Father knows you need them all.
Set your hearts on his kingdom first…
So do not worry about tomorrow: tomorrow will take care of itself.
Each day has enough trouble of its own. “
This week, I received tumor marker test results and found that my tumor markers are rising, again.
I was never a patient who hung her hat on tumor markers. I wanted always to look at the bigger picture and didn't want a weekly or monthly reminder of my battle. Instead, for six years, I was happy with making a plan and sticking to it for three months at a time. I was happy that every three months I could steel myself for the unknown. I lived every three months happily and trying to maintain as much normalcy as I could. Then, once every three months, four times a year, I would hold hands with My Big Man, ask Mom to fly into town for support. Together we could look cancer square in the face, get my scan results, and come up with a new gameplan.
This year, though, my world turned upside down in October. My doctor told me the cancer had control of my body, and what was once a cancer contained in my liver had blossomed into spots in my lungs, bones, and throughout my lymph nodes. I started contemplating death, and not death someday, but death soon. I started contemplating leaving my job that gave me so much strength, support, camraderie, a sense of normalcy, a sense of accomplishment, and a sense of purpose. I changed all of my passwords and wrote them down for easy access. I finally sorted through our file folders and organized paperwork, threw out seven year old documents and bills, and cleaned house in case Big Man had to take over the running of the household. I actually wrote down and printed out and put in a folder labeled "Legal Documents" instructions in the case of my death. I imagined my funeral. I read Bible passages. I listened to hymns. I cried, but I also felt a sense of control and peace.
And then my tumor markers started falling. The Taxol and Herceptin combo started working, and week after week I started taking notice of my tumor markers for the first time. By December, my tumor markers fell from 965 to only 75. I started rooting for my tumor markers. I started getting hope and inspiration from those test results. I realize now I also started hanging my hopes on that test result. Now that my tumor markers are rising, I'm not finding hope in my day-to-day accomplishments as much as before. Rather than making my three month leases on life count, I'm getting dejected with every passing blood test. The cancer is suddenly taking over my mind and my mood.
My whole family, also, has started asking, "Did you get results yet? What are your markers doing? What does this mean?" My family shares my pain when the results are poor. And now, without intending that, we are sad and defeated by the cancer on a weekly and monthly basis rather than every three months. Cancer is controlling more of our lives.
The doctors do not react to every test result. We do not make major treatment decisions based on a handful of bad blood tests because it takes a long time for trends on a cellular and blood level to actually translate into changes at the tumor level. It takes a long time for tumor markers to add up to actual, measurable tumor growth. So we were, in essence, getting very upset and worked up about results that were not going to impact my day-to-day treatment decisions in the slightest. These tumor markers were fabulous tools for encouragement when things were going our way, but now they are simply a hindrance.
This last week, my tumor markers rose to 312. I am upset. I am scared. My mind is wandering to sad, dark places. My Big Man and I cuddled together in silence after the results came back. Until Big Man broke that silence by stroking my bald head, looking down at my face resting on his chest and saying "You can't go anywhere. It's as simple as that. You aren't allowed to leave me. I can't handle that. So there."
And I decided to make the same "So there" statement. I will not allow these tumor marker tests to rule my life. I will not speak of them again on this blog. Instead, I will only get upset and nervous and scared every three months at scan time. Scans are coming up again on April 11th, so I suppose this is an easy promise to make for now. We will see in April and May if I can regain control and perspective. Can I go back to focusing on the bigger picture? I have made three month long goals for myself and my family before. I am going to make these same sort of goals now.
In October, I had a negotiation with God. I asked, and prayed, and begged that he please let me live to see my baby niece born.
My sister-in-law is due on April 6th. God has granted me that wish. God has answered my prayers. I am sure that on April 6th, as I watch a new, perfect life emerge before my eyes and as I become an Aunt for the first time, I'm sure I will have another negotiation with God. I'm sure I will pray that he let me see this beautiful child grow up. I know I will pray that He gives me the chance to share in her life. I want her to know me. I want her to love me. I want to hear her say my name. I want to see My Big Man hold her. I want to see my Big Man fall in love with her. I want to see my Big Man turn to me with a smile and imagine me as the Mommy.
Instead, I should simply sit back and enjoy that one day. I have to take a deep breath and remember my favorite excerpt from Matthew 6:
“That is why I am telling you not to worry about your life
And what you are to eat, nor about your body and what you are to wear. Surely life is more than food, and the body more than clothing!
…Can any of you, however much you worry, add one single cubit to your span of life?
And why worry about clothing?
Think of the flowers growing in the fields; they never have to work or spin;
Yet I assure you that not even Solomon in all his royal robes was clothed like one of these.
Now if that is how God clothes the wild flowers growing in the field…
Will he not much more look after you, you who have so little faith?
So do not worry;
Do not say, “What are we to eat? What are we to drink? What are we to wear?” Your heavenly Father knows you need them all.
Set your hearts on his kingdom first…
So do not worry about tomorrow: tomorrow will take care of itself.
Each day has enough trouble of its own. “
Friday, November 25, 2011
My Blog of Thanks Giving
Happy Thanksgiving, readers!
I hope you are all snuggled up on the couch, catching up on sleep, reading a book, or enjoying a football game! For me, Thanksgiving took on a whole new importance after my cancer diagnosis. Prior to cancer, Thanksgiving for me was simply the dress rehearsal for Christmas. Now, after cancer, Thanksgiving is my favorite holiday. I so appreciate this one day a year when I can sit back, surrounded by my loved ones who know me and my struggle best, and count my proverbial blessings.
Every year, my family goes around the dinner table and proposes a toast to his or her greatest blessing. Prior to cancer I always came up with something, but it was never anything that truly stirred my heart. Post-cancer, I was giving thanks for just about everything- from my health care insurance, to my co-workers who covered for me on sick days, to the plumber who cleaned a whole head's worth of my hair out of our shower drain. Everything, even the most inconsequential, took on a new importance post-cancer.
This year, for a moment back in October, that happiness, that ability to give thanks and mean it, even for the small stuff, the ability to count my blessings was taken away from me. I had trouble finding things to be thankful for when I was facing constant, aching back pain from my bone metastasis. It was hard to be thankful when my hair was falling out in huge clumps every time I took a shower. It was hard to be thankful when the Taxol started giving me daily nosebleeds. It was really hard to be thankful when, not only was I self conscious about my newly sheared head, but I also started breaking out in a hot red rash all over my face and bald head from the steroids. It was hard to be thankful when I missed a best college friend's wedding because I didn't have enough energy after chemo to make the cross country trip. But most of all, it was hard to give thanks for even the most constant blessing - my family and friends - when I looked around the room, remembered the terrible news my doctor had given, and imagined future Thanksgivings without me at the table.
I was running the risk of becoming jaded. I didn't like jaded Bridget. Jaded Bridget was not in line with my sunny personality. Had cancer finally won on every front? Had it taken away not only my health, my good looks, my physical ability to provide for my family, but even my happy personality?
I didn't know how to deal with this. I was having nightmares about visiting the pearly gates and being denied admission - very vivid dreams where I would be grilled by a scary looking judge about every piece of nasty gossip I had spread and every lie I'd ever told. I was petrified by and obsessed with the thought that we might have a vengeful God on our hands.
One Sunday afternoon, Big Man came home from a weekend away with friends. He asked me what I had done all weekend long in his absence and I did what so many wives would do. I lied. Did I tell him I sat on the couch all weekend and read that trashy chick lit novel I'd been meaning to get to since summer? Did I tell him I let the dog sleep in bed with me because I wanted some company while I ate popcorn and watched "Princess Bride" for the 50th time? No, I told Big Man that I spent the weekend at the grocery store, walking the dog, and "running errands" because Big Man wouldn't even know what errands exactly needed running. That beautiful fall Sunday evening, I fell asleep in our crisply cold room and woke up in a sweat at 4am from that same nightmare. Vengeful God had condemned me to an eternity in hell for lying to my husband about the dog sleeping and the book reading.
October was a tough month for me.
But then, without warning, hope and joy started peeking through in the most unexpected of places when I wasn't even looking for it. Hope found me in the bathroom when I lost my hair.
The first time I went through chemo and lost my hair six years ago, I visited a fancy salon to have my head shaved. They took me into a private back room, and some woman I've never seen before or since shaved me in about 5 minutes. This time around, I was much more matter-of-fact about the whole hair loss. I was prepared. I had done this before.
One morning, I woke up and I couldn't take the itching anymore. (Chemo kills your hair follicles so they itch and the hair shaving actually comes as a bit of a welcome relief.) I woke up Big Man. Without even a word of protest, even though it was only 7am on a Saturday morning, Big Man got up. He and I walked hand-in-hand to Walgreen's. We purchased a pair of clippers, I stuck my head into the sink, and my husband shaved off all my hair. He cried a bit, which made me cry. I thanked him profusely, which made him cry. But in the end, a moment I had dreaded actually gave me hope. I will cherish that memory forever. After seven years together, shaving my head in the bathroom sink was certainly our most intimate moment. We were a scared young couple looking ahead toward an uncertain future, but at least we were doing it together. He had my back. He would take care of me. "In sickness and in health" we had told each other when I still had hair and boobs. Big Man proved he meant those vows when he shaved my head last month, slowly, carefully, and whispering soft words of comfort when I cried.
I also found hope that I was afraid to share with all of you. I'm still so afraid to share this news with you because I'm afraid next week the tide will turn. My heart and hope might be crushed again, and only God knows when. When this good news changes, I will be forced to explain the change to all of you, and then all of you will be crushed right along with me. I'm also so afraid that, by sharing my hope here with all of you, I might be jinxing it! I always prided myself on being factual, logical, grounded.... now I fear cancer is making me all religious and superstitious!
But I can't keep the news to myself any longer. If I jinx myself, so be it!
Taxol gave me hope. The most unexpected drug has given me hope for a future. Taxol was a drug that was given to buy me more time. It was meant to keep the "cancer at bay" and "minimize the pain from my metastasis." After years of enrolling in clinical trials and taking the latest, greatest, best, most touted new medicines, Taxol, first discovered back in 1967, has turned out to be "The Drug" that I was hoping for! At least for now....
When I last got scans back at the beginning of October, my tumor markers were extremely high. The most important tumor marker in my blood that my doctors look at each week is called CA 27-29 and it is a tumor marker that breast cancer cells leave behind in patient's blood. Normally, in a healthy person, CA 27-29 counts range between 0-38. My CA 27-29 count was 965! This critically high tumor marker number is what prompted all the discussion about getting my affairs in order and it's what prompted getting a CT scan earlier than expected, which is what uncovered the tumors in my lungs and bones.
Well ladies and gentlemen, I am happy to tell you that my blood work this past month has been steadily dropping! The first few weeks of Taxol, they didn't take any tumor marker bloodwork. They wanted my body to get used to my new drug before trying to measure its efficacy. November 2nd was the big day. November 2nd, I went in with Big Man and Mom to meet with my doctor to find out the results of my first tumor marker test on Taxol. I was petrified! I was so scared that the Taxol wouldn't have had an effect and we would be one more drug closer to death.
I was prepared to give you all an update on my hair loss and impending doom on November 2nd when, to my surprise, I was told my tumor markers had dropped from 965 to 587. I was shocked, I was thrilled, I was completely unprepared for this foreign thing we call "Good News." However, I was still afraid. I realized then that I was afraid to hope. Cancer had left me jaded and afraid of hope.
Unable to share the news for fear of a jinx, I simply stayed silent. I stayed off the radar. As unused to good news as I had become, I continued planning as if the good news hadn't happened. I still want to schedule a meeting with my priest, but I no longer had nightmares about the pearly gates.
Then, at my appointment on November 16th, my markers fell to 300!
Then, at this week's appointment, my marker fell to 234!
I feel a little bit like I'm watching a Thanksgiving football game, and my team just got a first down. Improbable as it might be, we got another first down, and then another. The TD is now within my sites. I'm allowing myself to dream. I'm allowing myself to set goals. If I could get down below 100... 38 could be attainable. 38 means normal. How I would love to be normal! I'm right there in field goal range of normal. I can taste it.
November has allowed me to hope.
Back in October, my doctor told Big Man and me to go on a trip. We should take a trip so that we could take quality time away together while I was still feeling good, today. My bone pain was manageable with Advil, today. We needed to take advantage of our time together because we were together, today. So we did, we booked a trip to Europe at Christmas and we're so excited! But our excitement was also tinged with sadness. What was this trip? People take honeymoons. People now take "Babymoons." What was this a "Goodbye-moon?"
Now with this good news, that trip has taken on such a more fun and exciting feel. What other good news might we celebrate come Christmas? Maybe we could finally be like other couples and truly leave our worries at home? Maybe in the New Year we could start imagining a new home in our future? A home where we had the room to host more than 6 people for Thanksgiving dinner? A home of our very own, not an 800 sq foot condo? A home that we could decorate as we see fit for the Christmas holiday? A home that we could call our forever home? A home with space for an office AND a nursery? A nursery.
At chemo on November 23rd, instead of blogging as I should have, or answering emails as I should have, I allowed myself to google adoption resources in Massachusetts. I bookmarked the Massachusetts Department of Children and Families. If I get those tumor markers down to 38, down to the normal patient range, I'm going to allow myself to call their 800 number and start asking questions. Then maybe in 2013, when we're in our new forever home, I could actually schedule a home study. Hey, a girl can hope can't she?
I may be bald and covered in acne. I might not recognize myself in the mirror. I may have daily nosebleeds. I may have to sleep 13 hours every night, but at least I have hope. Those are just inconveniences. I wouldn't even elevate them to the level of "side effects." They are a mere nuisance, and they are a small price to pay for hope.
I realize as I'm writing this that I am getting all excited about just one month's worth of results. I know this is a marathon and not a sprint. I know that things can turn on a dime. But this Thanksgiving, I'm so Thankful for hope. I'm so Thankful for just one more day; just one more year. I don't want to get too greedy. I don't want to get ahead of myself. But I do want to take a moment and enjoy that future so many people take for granted. Thanks, God.
I hope you are all snuggled up on the couch, catching up on sleep, reading a book, or enjoying a football game! For me, Thanksgiving took on a whole new importance after my cancer diagnosis. Prior to cancer, Thanksgiving for me was simply the dress rehearsal for Christmas. Now, after cancer, Thanksgiving is my favorite holiday. I so appreciate this one day a year when I can sit back, surrounded by my loved ones who know me and my struggle best, and count my proverbial blessings.
Every year, my family goes around the dinner table and proposes a toast to his or her greatest blessing. Prior to cancer I always came up with something, but it was never anything that truly stirred my heart. Post-cancer, I was giving thanks for just about everything- from my health care insurance, to my co-workers who covered for me on sick days, to the plumber who cleaned a whole head's worth of my hair out of our shower drain. Everything, even the most inconsequential, took on a new importance post-cancer.
This year, for a moment back in October, that happiness, that ability to give thanks and mean it, even for the small stuff, the ability to count my blessings was taken away from me. I had trouble finding things to be thankful for when I was facing constant, aching back pain from my bone metastasis. It was hard to be thankful when my hair was falling out in huge clumps every time I took a shower. It was hard to be thankful when the Taxol started giving me daily nosebleeds. It was really hard to be thankful when, not only was I self conscious about my newly sheared head, but I also started breaking out in a hot red rash all over my face and bald head from the steroids. It was hard to be thankful when I missed a best college friend's wedding because I didn't have enough energy after chemo to make the cross country trip. But most of all, it was hard to give thanks for even the most constant blessing - my family and friends - when I looked around the room, remembered the terrible news my doctor had given, and imagined future Thanksgivings without me at the table.
I was running the risk of becoming jaded. I didn't like jaded Bridget. Jaded Bridget was not in line with my sunny personality. Had cancer finally won on every front? Had it taken away not only my health, my good looks, my physical ability to provide for my family, but even my happy personality?
I didn't know how to deal with this. I was having nightmares about visiting the pearly gates and being denied admission - very vivid dreams where I would be grilled by a scary looking judge about every piece of nasty gossip I had spread and every lie I'd ever told. I was petrified by and obsessed with the thought that we might have a vengeful God on our hands.
One Sunday afternoon, Big Man came home from a weekend away with friends. He asked me what I had done all weekend long in his absence and I did what so many wives would do. I lied. Did I tell him I sat on the couch all weekend and read that trashy chick lit novel I'd been meaning to get to since summer? Did I tell him I let the dog sleep in bed with me because I wanted some company while I ate popcorn and watched "Princess Bride" for the 50th time? No, I told Big Man that I spent the weekend at the grocery store, walking the dog, and "running errands" because Big Man wouldn't even know what errands exactly needed running. That beautiful fall Sunday evening, I fell asleep in our crisply cold room and woke up in a sweat at 4am from that same nightmare. Vengeful God had condemned me to an eternity in hell for lying to my husband about the dog sleeping and the book reading.
October was a tough month for me.
But then, without warning, hope and joy started peeking through in the most unexpected of places when I wasn't even looking for it. Hope found me in the bathroom when I lost my hair.
The first time I went through chemo and lost my hair six years ago, I visited a fancy salon to have my head shaved. They took me into a private back room, and some woman I've never seen before or since shaved me in about 5 minutes. This time around, I was much more matter-of-fact about the whole hair loss. I was prepared. I had done this before.
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| Me in my wig the night after Big Man shaved my hair. That's one good-looking wig & he's one good-looking hubby! |
I also found hope that I was afraid to share with all of you. I'm still so afraid to share this news with you because I'm afraid next week the tide will turn. My heart and hope might be crushed again, and only God knows when. When this good news changes, I will be forced to explain the change to all of you, and then all of you will be crushed right along with me. I'm also so afraid that, by sharing my hope here with all of you, I might be jinxing it! I always prided myself on being factual, logical, grounded.... now I fear cancer is making me all religious and superstitious!
But I can't keep the news to myself any longer. If I jinx myself, so be it!
Taxol gave me hope. The most unexpected drug has given me hope for a future. Taxol was a drug that was given to buy me more time. It was meant to keep the "cancer at bay" and "minimize the pain from my metastasis." After years of enrolling in clinical trials and taking the latest, greatest, best, most touted new medicines, Taxol, first discovered back in 1967, has turned out to be "The Drug" that I was hoping for! At least for now....
When I last got scans back at the beginning of October, my tumor markers were extremely high. The most important tumor marker in my blood that my doctors look at each week is called CA 27-29 and it is a tumor marker that breast cancer cells leave behind in patient's blood. Normally, in a healthy person, CA 27-29 counts range between 0-38. My CA 27-29 count was 965! This critically high tumor marker number is what prompted all the discussion about getting my affairs in order and it's what prompted getting a CT scan earlier than expected, which is what uncovered the tumors in my lungs and bones.
Well ladies and gentlemen, I am happy to tell you that my blood work this past month has been steadily dropping! The first few weeks of Taxol, they didn't take any tumor marker bloodwork. They wanted my body to get used to my new drug before trying to measure its efficacy. November 2nd was the big day. November 2nd, I went in with Big Man and Mom to meet with my doctor to find out the results of my first tumor marker test on Taxol. I was petrified! I was so scared that the Taxol wouldn't have had an effect and we would be one more drug closer to death.
I was prepared to give you all an update on my hair loss and impending doom on November 2nd when, to my surprise, I was told my tumor markers had dropped from 965 to 587. I was shocked, I was thrilled, I was completely unprepared for this foreign thing we call "Good News." However, I was still afraid. I realized then that I was afraid to hope. Cancer had left me jaded and afraid of hope.
Unable to share the news for fear of a jinx, I simply stayed silent. I stayed off the radar. As unused to good news as I had become, I continued planning as if the good news hadn't happened. I still want to schedule a meeting with my priest, but I no longer had nightmares about the pearly gates.
Then, at my appointment on November 16th, my markers fell to 300!
Then, at this week's appointment, my marker fell to 234!
I feel a little bit like I'm watching a Thanksgiving football game, and my team just got a first down. Improbable as it might be, we got another first down, and then another. The TD is now within my sites. I'm allowing myself to dream. I'm allowing myself to set goals. If I could get down below 100... 38 could be attainable. 38 means normal. How I would love to be normal! I'm right there in field goal range of normal. I can taste it.
November has allowed me to hope.
Back in October, my doctor told Big Man and me to go on a trip. We should take a trip so that we could take quality time away together while I was still feeling good, today. My bone pain was manageable with Advil, today. We needed to take advantage of our time together because we were together, today. So we did, we booked a trip to Europe at Christmas and we're so excited! But our excitement was also tinged with sadness. What was this trip? People take honeymoons. People now take "Babymoons." What was this a "Goodbye-moon?"
Now with this good news, that trip has taken on such a more fun and exciting feel. What other good news might we celebrate come Christmas? Maybe we could finally be like other couples and truly leave our worries at home? Maybe in the New Year we could start imagining a new home in our future? A home where we had the room to host more than 6 people for Thanksgiving dinner? A home of our very own, not an 800 sq foot condo? A home that we could decorate as we see fit for the Christmas holiday? A home that we could call our forever home? A home with space for an office AND a nursery? A nursery.
At chemo on November 23rd, instead of blogging as I should have, or answering emails as I should have, I allowed myself to google adoption resources in Massachusetts. I bookmarked the Massachusetts Department of Children and Families. If I get those tumor markers down to 38, down to the normal patient range, I'm going to allow myself to call their 800 number and start asking questions. Then maybe in 2013, when we're in our new forever home, I could actually schedule a home study. Hey, a girl can hope can't she?
I may be bald and covered in acne. I might not recognize myself in the mirror. I may have daily nosebleeds. I may have to sleep 13 hours every night, but at least I have hope. Those are just inconveniences. I wouldn't even elevate them to the level of "side effects." They are a mere nuisance, and they are a small price to pay for hope.
I realize as I'm writing this that I am getting all excited about just one month's worth of results. I know this is a marathon and not a sprint. I know that things can turn on a dime. But this Thanksgiving, I'm so Thankful for hope. I'm so Thankful for just one more day; just one more year. I don't want to get too greedy. I don't want to get ahead of myself. But I do want to take a moment and enjoy that future so many people take for granted. Thanks, God.
Friday, October 7, 2011
The Importance of October
October is here again and the newspapers are full of opinion pieces about the commercialization of breast cancer. People are arguing, yet again, that we are "pink washed" and that this Breast Cancer Awareness Month takes away from other cancer research.
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
Friday, September 16, 2011
What to Expect When You're Recurring
It seems these days all of my friends either have a new bundle of joy or are expecting a new baby. That's what happens. First comes a slew of weddings, and then the babies follow! In contrast, with my crazy cancer roller coaster, it's looking more and more like Daisy is the closest the Big Man and I will get to having a baby for the foreseeable future. A puppy that can go into her crate for 4 hours while I'm away at chemo is about all the responsibility I can take on right at this moment.
So...instead of the What to Expect When you're Expecting that all my friends now seem to own...I've decided to introduce to the world an alternative: What to Expect When You're Recurring: Tips from one metastatic cancer patient to another!
It's hard to believe, but I've now been on my latest Gemzar/Herceptin drug cocktail for almost 2 months. I've learned that it takes two full months to get into the swing of any new cancer journey. Most chemo drugs, for whatever mysterious reason, seem to be given in "cycles" that typically are 3 weeks in duration. I have now had 2 full cycles, so I am a bit more knowledgeable about this latest drug. In doing the math, this regimen is my 8th chemo cocktail. In 6 years, I've been on 15 different drugs by my count, all of which have been added, subtracted, tweaked, shaken and not stirred to create a special little cocktail that is just my own. It's been a whirlwind of changes and through it all I've learned a lot about how to deal with these cancer obstacles practically and with a little touch of grace. This latest cocktail has confirmed my previous observations, so allow me to share my hardearned tips and tricks with all of you here.
If you don't have cancer, I hope you never have to reference this list of tips. Alternatively, if someone you love is staring cancer in the face, or if you are dealing with this scary journey first hand, I hope my experience can shed some light on what happens after the doctor tells you "it's back." If any of you have any additional tips that I should add, please make good use of the comments section!
1) Life Goes On:
In the immediate aftermath of a cancer recurrence, you are going to be a ball of emotions, and rightfully so! I believe you run the gamut: from fear to anger to self-doubt to worry about your loved ones, and finally, to acceptance. You will reach acceptance. And once you've reached acceptance, you will find that life really goes on. The dog still needs to go out each morning. The house gets dirty. Dinner needs to be made. Laundry needs doing. The kids have to get to school and soccer practice. Things break. You will find solace in these day to day activities, and you will find their constancy both helpful and eery.
I was reminded of this last month. I had gotten one infusion of Herceptin and Gemzar, and was gearing up for infusion number 2, when it came to my attention that our water heater was leaking. The water heater didn't get the memo that I really couldn't deal with a plumber right at this moment in time. I simply couldn't believe it. After 15 years and countless condo owners, our water heater chose this moment to start dripping. Luckily, it was only a drip. Nothing was exploding yet, so I put on my big girl pants and decided to deal with it immediately before the situation got any worse.
Well, the situation got worse. It turns out we have to have our whole second bedroom built-in closet ripped out in order to get the water heaters out of our back door. I have to enlist carpenters, painters, plumbers, and delivery men. I have taken phone calls from contractors from the chemo chair, and I've at times wanted to both laugh and cry and come clean to my plumber that I really can't deal with him right now because I have just had a recurrence! But I don't. I don't want to make him feel uncomfortable. So instead, I pick up the phone, I collect dozens of estimates, I navigate the politics of my condo association, and I get out my checkbook.
Stuff like this happens all the time. The week after my double mastectomy, a water main broke right outside of our building and threatened to flood our condo and suck my car right into the sink hole that I had inadvertently parked on. Electricity goes out. Holidays and long standing travel plans are disrupted by your cancer recurrence. Try not to cry. Try instead to find some solace in the rhythms of everyday life. Take out all your frustration from your diagnosis on your trash men who missed your weekly pick up. Make a To Do list while you're sitting in the chemo chair. After that initial onslaught of tears, the day to day stresses actually help.
2) Clear your Calendar for Two Months:
As I implied earlier, it takes a good two cycles of a drug, a full two months, to really know how you will feel and what your good days will be. You will have good days. But every week will now be a 3 or 4 day week instead of the usual 7. Or you might miss one week or two weeks entirely every month. Your "month" will now be two weeks long. You're going to have to get used to stuffing a month or a week's worth of activity in 3 or 4 days. Until you know what you can handle, clear the books. Pull the cancer card. Cancel everything. After month two, you'll find you are ready to start piling things back on. Time and time again I've wondered how long it will take to get used to a drug regimen. 8 regimens into this journey, I've finally found the magic number, 2 months.
This two month schedule is also a good rule of thumb for most surgeries that I've had, barring any major complications.
3) Accept Help
For those first 2 months, embrace help. You can rely on the kindness of strangers, or you can pay someone. Landscapers and cleaning ladies are your best friends. Most grocery stores have some kind of delivery service these days (www.peapod.com) and swallow your pride and have your dry cleaners pick up and drop off all the laundry. There is no sweeter feeling than coming home from chemo, opening the front door to the smell of pine sol, looking out the window at your freshly mowed lawn, and climbing into your newly laundered and folded pj's and taking a good 12 hour rest! Embrace the help!
4) Embrace Drugs
Every chemo cocktail comes with its own set of side effects. Sadly, the usual way to deal with these side effects is with more drugs. I've struggled to come to terms with the sick, twisted logic of taking drugs to combat the side effects of other drugs. It seems like a real catch 22 to me, especially since my poor liver has cancer in it and also has to digest all of these crazy cocktails, but I have finally come to realization that a life in pain or a life of nausea is no life at all. I live a much fuller life when I throw up my arms and embrace the drugs my doctor recommends.
So far, I love my Gemzar/Herceptin cocktail, but at first, before I embraced drugs, I didn't love it at all. I was running fevers. I had night sweats and chills. I had awful stomach pains and bloating. I wasn't eating. Now my doctors have added some steroids to the IV drip I get every week to combat the stomach pain and inflammation. I also take some prescription pills to combat the night sweats, and I pop Tylenols before, during, and after my infusions each week to keep the fevers from even developing. I feel like a total crackhead. I still feel sorry for my liver, but I'm not rolling around in pain every night. I'm able to get a good night's rest, which leaves me ready for each morning. I am living a full life on this chemo, and that to me is the definition of a chemo cocktail worth loving!
I have, however, drawn a line in the sand with this rule. I hate painkillers. I don't like the way they make me feel. Prescription painkillers scare me and leave me exhausted in bed and not feeling like my perky self. I try to combat pain with Tylenol. I've decided in the past that, if the chemo pain is bad enough to warrant prescription painkillers on a regular basis, I'm going to have to say no to that particular regimen. That is my personal limit. You are going to have to discover your personal limits through trial and error. Be open and honest with your doctor and nurses. No side effect is too small to ignore. Speak up, and chances are good that together your team can come up with a good plan for living a full and happy drugged up life.
5) Stop Embracing Help at Some Point
Eventually, you are going to find that changing out of the PJs and taking a trip to the store is a good thing. Having a pile of laundry and a needy child or dog is the only thing that's going to force you to get out of bed. Chemo makes you want to sleep. Your blood counts are going to be all over the place, and your body deals with that side effect by getting tired. By all means, give your body a rest, but it isn't healthy to live in bed either. So, by month 2, by the time you know your schedule, you should start cutting back on all the assistance a bit. That said, I still embrace the cleaning lady. Her help every other week allows me to focus on other tasks that I've always been meaning to get to. If she can vaccuum and dust, I can finally get around to cleaning out my fridge!
6) Don't Over Commit
Even after the 2 month window, you still need to listen to your body and stick to a strict sleeping/resting schedule. For me, I get Gemzar/Herceptin every Wednesday. I have timed the infusion for 5pm. The infusion department is open until 8pm everyday so I can get a full day of work in before heading to the doctor around 4. I'm home by 8pm. It is understood that Big Man is responsible for preparing dinner/ordering take out every Wednesday. I am asleep by 8:30. A full 12 hours is more than enough for me before I get back to work on Thursday morning.
That said, Thursdays I try to keep my schedule at work pretty light. Thursdays are an answer email, keep the lid on things kind of day. I try not to lead any major conference calls or meetings. I'm simply not in a good spot and probably wouldn't be sealing any major deals on Thursdays. Instead I try to close out projects Monday through Wednesday.
I've noticed I am ready to take on the world on Fridays, but I get pretty tired again by Friday evening. I think that might be my blood counts dropping or something, so I leave weekend plans for Saturdays.
You will find your own schedule. That's what the 2 month window is for, but make sure once you know your schedule that you stick to it. I have found it is better to underpromise and overdeliver with cancer. Otherwise, you will be letting people down. I hate having to cancel long standing plans. I hate dropping the ball. I have dropped too many balls in these past six years, so instead, I stick to my schedule.
7) Don't Bring Friends to Chemo
This rule is a tough one for many people to understand. Allow me to explain. At chemo, various people come in and out to check on you. You might end up chatting with your doctor about your menstrual cycle, menopause, constipation, nausea, any number of embarrassing side effects. Your doctor might want to do a physical exam that requires your friend leave the room. You might get sick to your stomach while stuck in your chemo chair and need a bucket. Long story short, your chemo visits are a down and dirty affair. Through trial and error, I have found it is best to limit visitors to your most intimate circle of friends and family. Don't have more than one visitor per appointment because, frankly, the doctor's clinic rooms are small and chairs at chemo are a precious commodity. If your doctor comes to speak with you and you have a posse of 10 standing around, it's just an awkward and graceless affair. It's best to keep the friends at bay and ask them to help in other ways. "Keeping you company" at chemo is simply not the best use of their time. Instead, I bring my to do list with me and start checking things off. Chemo is your chance to keep up with your emails. I have written many a thank you note for a gift while sitting in the chemo chair. Bring a good magazine, a good book, or a good movie. Don't bring a posse of good friends!
8) Enjoy Your Next Three Months!
Any doctor worth his salt is going to tell you that we can't know if a drug regimen is working unless you've given it time to work. When you first receive news of a recurrence and you go onto a new cocktail, you're going to immediately look for signs of effectiveness. Are your tumor markers going down? Are you still jaundiced? Is the pain improving? If you have a palpable lump, has it decreased in size?
These are all great questions to ask and your desire to know is understandable. I'm sorry to say, though, that you need to simply hurry up and wait. Give your body the time it needs to navigate this new drug. Give the drug the time it needs to work. In most cases, you won't receive any news or know if anything is working for 3 months, until your next set of scans. There are sometimes exceptions to this 3 month rule, but that's the general time frame.
This delay might stress you out, but I'm begging you to take advantage of this time. Once you know your new chemo routine, plan some trips. Take a look at your life, take a look at what in your life you want to improve or things on that bucket list you'd like to check off. Get started living. You can live a lot of life in 3 months.
Big Man and I did this together after my most recent setback. I realized that, while most of my peers were having babies and going back to graduate school, I needed to set more attainable goals for my next chunk of free time. I couldn't get a law degree in 3 months, and I didn't want to start something and then have to stop it and disappoint myself if this Gemzar fails to work. So instead, I signed up for tennis lessons. I set a goal of 50 more good pages in my manuscript, rather than set a goal of finishing the whole thing, and I signed Daisy up for obedience classes. My goal is to get Daisy on board as a "therapy dog" to help sick kids in hospitals or people stuck in nursing homes. These are all short term goals that can easily be attained in the 3 months God has given me.
This last tip goes for all of you, dear Readers. What will you do with the next three months of your lives? Think long and hard. Make it a good goal, and see if you can't find a goal that you'll actually finish in three months!
So many of our lifelong goals are long term and focused on a point way in the future. Try to find a goal that can actually be started AND finished in the next three months! It feels really good to accomplish something, and we so often don't get that satisfaction in our busy, multi-tasking world!
So...instead of the What to Expect When you're Expecting that all my friends now seem to own...I've decided to introduce to the world an alternative: What to Expect When You're Recurring: Tips from one metastatic cancer patient to another!
It's hard to believe, but I've now been on my latest Gemzar/Herceptin drug cocktail for almost 2 months. I've learned that it takes two full months to get into the swing of any new cancer journey. Most chemo drugs, for whatever mysterious reason, seem to be given in "cycles" that typically are 3 weeks in duration. I have now had 2 full cycles, so I am a bit more knowledgeable about this latest drug. In doing the math, this regimen is my 8th chemo cocktail. In 6 years, I've been on 15 different drugs by my count, all of which have been added, subtracted, tweaked, shaken and not stirred to create a special little cocktail that is just my own. It's been a whirlwind of changes and through it all I've learned a lot about how to deal with these cancer obstacles practically and with a little touch of grace. This latest cocktail has confirmed my previous observations, so allow me to share my hardearned tips and tricks with all of you here.
If you don't have cancer, I hope you never have to reference this list of tips. Alternatively, if someone you love is staring cancer in the face, or if you are dealing with this scary journey first hand, I hope my experience can shed some light on what happens after the doctor tells you "it's back." If any of you have any additional tips that I should add, please make good use of the comments section!
What to Expect When You're Recurring
1) Life Goes On:
In the immediate aftermath of a cancer recurrence, you are going to be a ball of emotions, and rightfully so! I believe you run the gamut: from fear to anger to self-doubt to worry about your loved ones, and finally, to acceptance. You will reach acceptance. And once you've reached acceptance, you will find that life really goes on. The dog still needs to go out each morning. The house gets dirty. Dinner needs to be made. Laundry needs doing. The kids have to get to school and soccer practice. Things break. You will find solace in these day to day activities, and you will find their constancy both helpful and eery.
I was reminded of this last month. I had gotten one infusion of Herceptin and Gemzar, and was gearing up for infusion number 2, when it came to my attention that our water heater was leaking. The water heater didn't get the memo that I really couldn't deal with a plumber right at this moment in time. I simply couldn't believe it. After 15 years and countless condo owners, our water heater chose this moment to start dripping. Luckily, it was only a drip. Nothing was exploding yet, so I put on my big girl pants and decided to deal with it immediately before the situation got any worse.
Well, the situation got worse. It turns out we have to have our whole second bedroom built-in closet ripped out in order to get the water heaters out of our back door. I have to enlist carpenters, painters, plumbers, and delivery men. I have taken phone calls from contractors from the chemo chair, and I've at times wanted to both laugh and cry and come clean to my plumber that I really can't deal with him right now because I have just had a recurrence! But I don't. I don't want to make him feel uncomfortable. So instead, I pick up the phone, I collect dozens of estimates, I navigate the politics of my condo association, and I get out my checkbook.
Stuff like this happens all the time. The week after my double mastectomy, a water main broke right outside of our building and threatened to flood our condo and suck my car right into the sink hole that I had inadvertently parked on. Electricity goes out. Holidays and long standing travel plans are disrupted by your cancer recurrence. Try not to cry. Try instead to find some solace in the rhythms of everyday life. Take out all your frustration from your diagnosis on your trash men who missed your weekly pick up. Make a To Do list while you're sitting in the chemo chair. After that initial onslaught of tears, the day to day stresses actually help.
2) Clear your Calendar for Two Months:
As I implied earlier, it takes a good two cycles of a drug, a full two months, to really know how you will feel and what your good days will be. You will have good days. But every week will now be a 3 or 4 day week instead of the usual 7. Or you might miss one week or two weeks entirely every month. Your "month" will now be two weeks long. You're going to have to get used to stuffing a month or a week's worth of activity in 3 or 4 days. Until you know what you can handle, clear the books. Pull the cancer card. Cancel everything. After month two, you'll find you are ready to start piling things back on. Time and time again I've wondered how long it will take to get used to a drug regimen. 8 regimens into this journey, I've finally found the magic number, 2 months.
This two month schedule is also a good rule of thumb for most surgeries that I've had, barring any major complications.
3) Accept Help
For those first 2 months, embrace help. You can rely on the kindness of strangers, or you can pay someone. Landscapers and cleaning ladies are your best friends. Most grocery stores have some kind of delivery service these days (www.peapod.com) and swallow your pride and have your dry cleaners pick up and drop off all the laundry. There is no sweeter feeling than coming home from chemo, opening the front door to the smell of pine sol, looking out the window at your freshly mowed lawn, and climbing into your newly laundered and folded pj's and taking a good 12 hour rest! Embrace the help!
4) Embrace Drugs
Every chemo cocktail comes with its own set of side effects. Sadly, the usual way to deal with these side effects is with more drugs. I've struggled to come to terms with the sick, twisted logic of taking drugs to combat the side effects of other drugs. It seems like a real catch 22 to me, especially since my poor liver has cancer in it and also has to digest all of these crazy cocktails, but I have finally come to realization that a life in pain or a life of nausea is no life at all. I live a much fuller life when I throw up my arms and embrace the drugs my doctor recommends.
So far, I love my Gemzar/Herceptin cocktail, but at first, before I embraced drugs, I didn't love it at all. I was running fevers. I had night sweats and chills. I had awful stomach pains and bloating. I wasn't eating. Now my doctors have added some steroids to the IV drip I get every week to combat the stomach pain and inflammation. I also take some prescription pills to combat the night sweats, and I pop Tylenols before, during, and after my infusions each week to keep the fevers from even developing. I feel like a total crackhead. I still feel sorry for my liver, but I'm not rolling around in pain every night. I'm able to get a good night's rest, which leaves me ready for each morning. I am living a full life on this chemo, and that to me is the definition of a chemo cocktail worth loving!
I have, however, drawn a line in the sand with this rule. I hate painkillers. I don't like the way they make me feel. Prescription painkillers scare me and leave me exhausted in bed and not feeling like my perky self. I try to combat pain with Tylenol. I've decided in the past that, if the chemo pain is bad enough to warrant prescription painkillers on a regular basis, I'm going to have to say no to that particular regimen. That is my personal limit. You are going to have to discover your personal limits through trial and error. Be open and honest with your doctor and nurses. No side effect is too small to ignore. Speak up, and chances are good that together your team can come up with a good plan for living a full and happy drugged up life.
5) Stop Embracing Help at Some Point
Eventually, you are going to find that changing out of the PJs and taking a trip to the store is a good thing. Having a pile of laundry and a needy child or dog is the only thing that's going to force you to get out of bed. Chemo makes you want to sleep. Your blood counts are going to be all over the place, and your body deals with that side effect by getting tired. By all means, give your body a rest, but it isn't healthy to live in bed either. So, by month 2, by the time you know your schedule, you should start cutting back on all the assistance a bit. That said, I still embrace the cleaning lady. Her help every other week allows me to focus on other tasks that I've always been meaning to get to. If she can vaccuum and dust, I can finally get around to cleaning out my fridge!
6) Don't Over Commit
Even after the 2 month window, you still need to listen to your body and stick to a strict sleeping/resting schedule. For me, I get Gemzar/Herceptin every Wednesday. I have timed the infusion for 5pm. The infusion department is open until 8pm everyday so I can get a full day of work in before heading to the doctor around 4. I'm home by 8pm. It is understood that Big Man is responsible for preparing dinner/ordering take out every Wednesday. I am asleep by 8:30. A full 12 hours is more than enough for me before I get back to work on Thursday morning.
That said, Thursdays I try to keep my schedule at work pretty light. Thursdays are an answer email, keep the lid on things kind of day. I try not to lead any major conference calls or meetings. I'm simply not in a good spot and probably wouldn't be sealing any major deals on Thursdays. Instead I try to close out projects Monday through Wednesday.
I've noticed I am ready to take on the world on Fridays, but I get pretty tired again by Friday evening. I think that might be my blood counts dropping or something, so I leave weekend plans for Saturdays.
You will find your own schedule. That's what the 2 month window is for, but make sure once you know your schedule that you stick to it. I have found it is better to underpromise and overdeliver with cancer. Otherwise, you will be letting people down. I hate having to cancel long standing plans. I hate dropping the ball. I have dropped too many balls in these past six years, so instead, I stick to my schedule.
7) Don't Bring Friends to Chemo
This rule is a tough one for many people to understand. Allow me to explain. At chemo, various people come in and out to check on you. You might end up chatting with your doctor about your menstrual cycle, menopause, constipation, nausea, any number of embarrassing side effects. Your doctor might want to do a physical exam that requires your friend leave the room. You might get sick to your stomach while stuck in your chemo chair and need a bucket. Long story short, your chemo visits are a down and dirty affair. Through trial and error, I have found it is best to limit visitors to your most intimate circle of friends and family. Don't have more than one visitor per appointment because, frankly, the doctor's clinic rooms are small and chairs at chemo are a precious commodity. If your doctor comes to speak with you and you have a posse of 10 standing around, it's just an awkward and graceless affair. It's best to keep the friends at bay and ask them to help in other ways. "Keeping you company" at chemo is simply not the best use of their time. Instead, I bring my to do list with me and start checking things off. Chemo is your chance to keep up with your emails. I have written many a thank you note for a gift while sitting in the chemo chair. Bring a good magazine, a good book, or a good movie. Don't bring a posse of good friends!
8) Enjoy Your Next Three Months!
Any doctor worth his salt is going to tell you that we can't know if a drug regimen is working unless you've given it time to work. When you first receive news of a recurrence and you go onto a new cocktail, you're going to immediately look for signs of effectiveness. Are your tumor markers going down? Are you still jaundiced? Is the pain improving? If you have a palpable lump, has it decreased in size?
These are all great questions to ask and your desire to know is understandable. I'm sorry to say, though, that you need to simply hurry up and wait. Give your body the time it needs to navigate this new drug. Give the drug the time it needs to work. In most cases, you won't receive any news or know if anything is working for 3 months, until your next set of scans. There are sometimes exceptions to this 3 month rule, but that's the general time frame.
This delay might stress you out, but I'm begging you to take advantage of this time. Once you know your new chemo routine, plan some trips. Take a look at your life, take a look at what in your life you want to improve or things on that bucket list you'd like to check off. Get started living. You can live a lot of life in 3 months.
 |
| Daisy and Me....enjoying our cocktail.. and enjoying our Next Three Months! |
This last tip goes for all of you, dear Readers. What will you do with the next three months of your lives? Think long and hard. Make it a good goal, and see if you can't find a goal that you'll actually finish in three months!
So many of our lifelong goals are long term and focused on a point way in the future. Try to find a goal that can actually be started AND finished in the next three months! It feels really good to accomplish something, and we so often don't get that satisfaction in our busy, multi-tasking world!
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"
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?
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