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 hair. Show all posts
Showing posts with label hair. Show all posts
Tuesday, August 28, 2012
Friday, November 25, 2011
My Blog of Thanks Giving
Happy Thanksgiving, readers!
I hope you are all snuggled up on the couch, catching up on sleep, reading a book, or enjoying a football game! For me, Thanksgiving took on a whole new importance after my cancer diagnosis. Prior to cancer, Thanksgiving for me was simply the dress rehearsal for Christmas. Now, after cancer, Thanksgiving is my favorite holiday. I so appreciate this one day a year when I can sit back, surrounded by my loved ones who know me and my struggle best, and count my proverbial blessings.
Every year, my family goes around the dinner table and proposes a toast to his or her greatest blessing. Prior to cancer I always came up with something, but it was never anything that truly stirred my heart. Post-cancer, I was giving thanks for just about everything- from my health care insurance, to my co-workers who covered for me on sick days, to the plumber who cleaned a whole head's worth of my hair out of our shower drain. Everything, even the most inconsequential, took on a new importance post-cancer.
This year, for a moment back in October, that happiness, that ability to give thanks and mean it, even for the small stuff, the ability to count my blessings was taken away from me. I had trouble finding things to be thankful for when I was facing constant, aching back pain from my bone metastasis. It was hard to be thankful when my hair was falling out in huge clumps every time I took a shower. It was hard to be thankful when the Taxol started giving me daily nosebleeds. It was really hard to be thankful when, not only was I self conscious about my newly sheared head, but I also started breaking out in a hot red rash all over my face and bald head from the steroids. It was hard to be thankful when I missed a best college friend's wedding because I didn't have enough energy after chemo to make the cross country trip. But most of all, it was hard to give thanks for even the most constant blessing - my family and friends - when I looked around the room, remembered the terrible news my doctor had given, and imagined future Thanksgivings without me at the table.
I was running the risk of becoming jaded. I didn't like jaded Bridget. Jaded Bridget was not in line with my sunny personality. Had cancer finally won on every front? Had it taken away not only my health, my good looks, my physical ability to provide for my family, but even my happy personality?
I didn't know how to deal with this. I was having nightmares about visiting the pearly gates and being denied admission - very vivid dreams where I would be grilled by a scary looking judge about every piece of nasty gossip I had spread and every lie I'd ever told. I was petrified by and obsessed with the thought that we might have a vengeful God on our hands.
One Sunday afternoon, Big Man came home from a weekend away with friends. He asked me what I had done all weekend long in his absence and I did what so many wives would do. I lied. Did I tell him I sat on the couch all weekend and read that trashy chick lit novel I'd been meaning to get to since summer? Did I tell him I let the dog sleep in bed with me because I wanted some company while I ate popcorn and watched "Princess Bride" for the 50th time? No, I told Big Man that I spent the weekend at the grocery store, walking the dog, and "running errands" because Big Man wouldn't even know what errands exactly needed running. That beautiful fall Sunday evening, I fell asleep in our crisply cold room and woke up in a sweat at 4am from that same nightmare. Vengeful God had condemned me to an eternity in hell for lying to my husband about the dog sleeping and the book reading.
October was a tough month for me.
But then, without warning, hope and joy started peeking through in the most unexpected of places when I wasn't even looking for it. Hope found me in the bathroom when I lost my hair.
The first time I went through chemo and lost my hair six years ago, I visited a fancy salon to have my head shaved. They took me into a private back room, and some woman I've never seen before or since shaved me in about 5 minutes. This time around, I was much more matter-of-fact about the whole hair loss. I was prepared. I had done this before.
One morning, I woke up and I couldn't take the itching anymore. (Chemo kills your hair follicles so they itch and the hair shaving actually comes as a bit of a welcome relief.) I woke up Big Man. Without even a word of protest, even though it was only 7am on a Saturday morning, Big Man got up. He and I walked hand-in-hand to Walgreen's. We purchased a pair of clippers, I stuck my head into the sink, and my husband shaved off all my hair. He cried a bit, which made me cry. I thanked him profusely, which made him cry. But in the end, a moment I had dreaded actually gave me hope. I will cherish that memory forever. After seven years together, shaving my head in the bathroom sink was certainly our most intimate moment. We were a scared young couple looking ahead toward an uncertain future, but at least we were doing it together. He had my back. He would take care of me. "In sickness and in health" we had told each other when I still had hair and boobs. Big Man proved he meant those vows when he shaved my head last month, slowly, carefully, and whispering soft words of comfort when I cried.
I also found hope that I was afraid to share with all of you. I'm still so afraid to share this news with you because I'm afraid next week the tide will turn. My heart and hope might be crushed again, and only God knows when. When this good news changes, I will be forced to explain the change to all of you, and then all of you will be crushed right along with me. I'm also so afraid that, by sharing my hope here with all of you, I might be jinxing it! I always prided myself on being factual, logical, grounded.... now I fear cancer is making me all religious and superstitious!
But I can't keep the news to myself any longer. If I jinx myself, so be it!
Taxol gave me hope. The most unexpected drug has given me hope for a future. Taxol was a drug that was given to buy me more time. It was meant to keep the "cancer at bay" and "minimize the pain from my metastasis." After years of enrolling in clinical trials and taking the latest, greatest, best, most touted new medicines, Taxol, first discovered back in 1967, has turned out to be "The Drug" that I was hoping for! At least for now....
When I last got scans back at the beginning of October, my tumor markers were extremely high. The most important tumor marker in my blood that my doctors look at each week is called CA 27-29 and it is a tumor marker that breast cancer cells leave behind in patient's blood. Normally, in a healthy person, CA 27-29 counts range between 0-38. My CA 27-29 count was 965! This critically high tumor marker number is what prompted all the discussion about getting my affairs in order and it's what prompted getting a CT scan earlier than expected, which is what uncovered the tumors in my lungs and bones.
Well ladies and gentlemen, I am happy to tell you that my blood work this past month has been steadily dropping! The first few weeks of Taxol, they didn't take any tumor marker bloodwork. They wanted my body to get used to my new drug before trying to measure its efficacy. November 2nd was the big day. November 2nd, I went in with Big Man and Mom to meet with my doctor to find out the results of my first tumor marker test on Taxol. I was petrified! I was so scared that the Taxol wouldn't have had an effect and we would be one more drug closer to death.
I was prepared to give you all an update on my hair loss and impending doom on November 2nd when, to my surprise, I was told my tumor markers had dropped from 965 to 587. I was shocked, I was thrilled, I was completely unprepared for this foreign thing we call "Good News." However, I was still afraid. I realized then that I was afraid to hope. Cancer had left me jaded and afraid of hope.
Unable to share the news for fear of a jinx, I simply stayed silent. I stayed off the radar. As unused to good news as I had become, I continued planning as if the good news hadn't happened. I still want to schedule a meeting with my priest, but I no longer had nightmares about the pearly gates.
Then, at my appointment on November 16th, my markers fell to 300!
Then, at this week's appointment, my marker fell to 234!
I feel a little bit like I'm watching a Thanksgiving football game, and my team just got a first down. Improbable as it might be, we got another first down, and then another. The TD is now within my sites. I'm allowing myself to dream. I'm allowing myself to set goals. If I could get down below 100... 38 could be attainable. 38 means normal. How I would love to be normal! I'm right there in field goal range of normal. I can taste it.
November has allowed me to hope.
Back in October, my doctor told Big Man and me to go on a trip. We should take a trip so that we could take quality time away together while I was still feeling good, today. My bone pain was manageable with Advil, today. We needed to take advantage of our time together because we were together, today. So we did, we booked a trip to Europe at Christmas and we're so excited! But our excitement was also tinged with sadness. What was this trip? People take honeymoons. People now take "Babymoons." What was this a "Goodbye-moon?"
Now with this good news, that trip has taken on such a more fun and exciting feel. What other good news might we celebrate come Christmas? Maybe we could finally be like other couples and truly leave our worries at home? Maybe in the New Year we could start imagining a new home in our future? A home where we had the room to host more than 6 people for Thanksgiving dinner? A home of our very own, not an 800 sq foot condo? A home that we could decorate as we see fit for the Christmas holiday? A home that we could call our forever home? A home with space for an office AND a nursery? A nursery.
At chemo on November 23rd, instead of blogging as I should have, or answering emails as I should have, I allowed myself to google adoption resources in Massachusetts. I bookmarked the Massachusetts Department of Children and Families. If I get those tumor markers down to 38, down to the normal patient range, I'm going to allow myself to call their 800 number and start asking questions. Then maybe in 2013, when we're in our new forever home, I could actually schedule a home study. Hey, a girl can hope can't she?
I may be bald and covered in acne. I might not recognize myself in the mirror. I may have daily nosebleeds. I may have to sleep 13 hours every night, but at least I have hope. Those are just inconveniences. I wouldn't even elevate them to the level of "side effects." They are a mere nuisance, and they are a small price to pay for hope.
I realize as I'm writing this that I am getting all excited about just one month's worth of results. I know this is a marathon and not a sprint. I know that things can turn on a dime. But this Thanksgiving, I'm so Thankful for hope. I'm so Thankful for just one more day; just one more year. I don't want to get too greedy. I don't want to get ahead of myself. But I do want to take a moment and enjoy that future so many people take for granted. Thanks, God.
I hope you are all snuggled up on the couch, catching up on sleep, reading a book, or enjoying a football game! For me, Thanksgiving took on a whole new importance after my cancer diagnosis. Prior to cancer, Thanksgiving for me was simply the dress rehearsal for Christmas. Now, after cancer, Thanksgiving is my favorite holiday. I so appreciate this one day a year when I can sit back, surrounded by my loved ones who know me and my struggle best, and count my proverbial blessings.
Every year, my family goes around the dinner table and proposes a toast to his or her greatest blessing. Prior to cancer I always came up with something, but it was never anything that truly stirred my heart. Post-cancer, I was giving thanks for just about everything- from my health care insurance, to my co-workers who covered for me on sick days, to the plumber who cleaned a whole head's worth of my hair out of our shower drain. Everything, even the most inconsequential, took on a new importance post-cancer.
This year, for a moment back in October, that happiness, that ability to give thanks and mean it, even for the small stuff, the ability to count my blessings was taken away from me. I had trouble finding things to be thankful for when I was facing constant, aching back pain from my bone metastasis. It was hard to be thankful when my hair was falling out in huge clumps every time I took a shower. It was hard to be thankful when the Taxol started giving me daily nosebleeds. It was really hard to be thankful when, not only was I self conscious about my newly sheared head, but I also started breaking out in a hot red rash all over my face and bald head from the steroids. It was hard to be thankful when I missed a best college friend's wedding because I didn't have enough energy after chemo to make the cross country trip. But most of all, it was hard to give thanks for even the most constant blessing - my family and friends - when I looked around the room, remembered the terrible news my doctor had given, and imagined future Thanksgivings without me at the table.
I was running the risk of becoming jaded. I didn't like jaded Bridget. Jaded Bridget was not in line with my sunny personality. Had cancer finally won on every front? Had it taken away not only my health, my good looks, my physical ability to provide for my family, but even my happy personality?
I didn't know how to deal with this. I was having nightmares about visiting the pearly gates and being denied admission - very vivid dreams where I would be grilled by a scary looking judge about every piece of nasty gossip I had spread and every lie I'd ever told. I was petrified by and obsessed with the thought that we might have a vengeful God on our hands.
One Sunday afternoon, Big Man came home from a weekend away with friends. He asked me what I had done all weekend long in his absence and I did what so many wives would do. I lied. Did I tell him I sat on the couch all weekend and read that trashy chick lit novel I'd been meaning to get to since summer? Did I tell him I let the dog sleep in bed with me because I wanted some company while I ate popcorn and watched "Princess Bride" for the 50th time? No, I told Big Man that I spent the weekend at the grocery store, walking the dog, and "running errands" because Big Man wouldn't even know what errands exactly needed running. That beautiful fall Sunday evening, I fell asleep in our crisply cold room and woke up in a sweat at 4am from that same nightmare. Vengeful God had condemned me to an eternity in hell for lying to my husband about the dog sleeping and the book reading.
October was a tough month for me.
But then, without warning, hope and joy started peeking through in the most unexpected of places when I wasn't even looking for it. Hope found me in the bathroom when I lost my hair.
The first time I went through chemo and lost my hair six years ago, I visited a fancy salon to have my head shaved. They took me into a private back room, and some woman I've never seen before or since shaved me in about 5 minutes. This time around, I was much more matter-of-fact about the whole hair loss. I was prepared. I had done this before.
 |
| Me in my wig the night after Big Man shaved my hair. That's one good-looking wig & he's one good-looking hubby! |
I also found hope that I was afraid to share with all of you. I'm still so afraid to share this news with you because I'm afraid next week the tide will turn. My heart and hope might be crushed again, and only God knows when. When this good news changes, I will be forced to explain the change to all of you, and then all of you will be crushed right along with me. I'm also so afraid that, by sharing my hope here with all of you, I might be jinxing it! I always prided myself on being factual, logical, grounded.... now I fear cancer is making me all religious and superstitious!
But I can't keep the news to myself any longer. If I jinx myself, so be it!
Taxol gave me hope. The most unexpected drug has given me hope for a future. Taxol was a drug that was given to buy me more time. It was meant to keep the "cancer at bay" and "minimize the pain from my metastasis." After years of enrolling in clinical trials and taking the latest, greatest, best, most touted new medicines, Taxol, first discovered back in 1967, has turned out to be "The Drug" that I was hoping for! At least for now....
When I last got scans back at the beginning of October, my tumor markers were extremely high. The most important tumor marker in my blood that my doctors look at each week is called CA 27-29 and it is a tumor marker that breast cancer cells leave behind in patient's blood. Normally, in a healthy person, CA 27-29 counts range between 0-38. My CA 27-29 count was 965! This critically high tumor marker number is what prompted all the discussion about getting my affairs in order and it's what prompted getting a CT scan earlier than expected, which is what uncovered the tumors in my lungs and bones.
Well ladies and gentlemen, I am happy to tell you that my blood work this past month has been steadily dropping! The first few weeks of Taxol, they didn't take any tumor marker bloodwork. They wanted my body to get used to my new drug before trying to measure its efficacy. November 2nd was the big day. November 2nd, I went in with Big Man and Mom to meet with my doctor to find out the results of my first tumor marker test on Taxol. I was petrified! I was so scared that the Taxol wouldn't have had an effect and we would be one more drug closer to death.
I was prepared to give you all an update on my hair loss and impending doom on November 2nd when, to my surprise, I was told my tumor markers had dropped from 965 to 587. I was shocked, I was thrilled, I was completely unprepared for this foreign thing we call "Good News." However, I was still afraid. I realized then that I was afraid to hope. Cancer had left me jaded and afraid of hope.
Unable to share the news for fear of a jinx, I simply stayed silent. I stayed off the radar. As unused to good news as I had become, I continued planning as if the good news hadn't happened. I still want to schedule a meeting with my priest, but I no longer had nightmares about the pearly gates.
Then, at my appointment on November 16th, my markers fell to 300!
Then, at this week's appointment, my marker fell to 234!
I feel a little bit like I'm watching a Thanksgiving football game, and my team just got a first down. Improbable as it might be, we got another first down, and then another. The TD is now within my sites. I'm allowing myself to dream. I'm allowing myself to set goals. If I could get down below 100... 38 could be attainable. 38 means normal. How I would love to be normal! I'm right there in field goal range of normal. I can taste it.
November has allowed me to hope.
Back in October, my doctor told Big Man and me to go on a trip. We should take a trip so that we could take quality time away together while I was still feeling good, today. My bone pain was manageable with Advil, today. We needed to take advantage of our time together because we were together, today. So we did, we booked a trip to Europe at Christmas and we're so excited! But our excitement was also tinged with sadness. What was this trip? People take honeymoons. People now take "Babymoons." What was this a "Goodbye-moon?"
Now with this good news, that trip has taken on such a more fun and exciting feel. What other good news might we celebrate come Christmas? Maybe we could finally be like other couples and truly leave our worries at home? Maybe in the New Year we could start imagining a new home in our future? A home where we had the room to host more than 6 people for Thanksgiving dinner? A home of our very own, not an 800 sq foot condo? A home that we could decorate as we see fit for the Christmas holiday? A home that we could call our forever home? A home with space for an office AND a nursery? A nursery.
At chemo on November 23rd, instead of blogging as I should have, or answering emails as I should have, I allowed myself to google adoption resources in Massachusetts. I bookmarked the Massachusetts Department of Children and Families. If I get those tumor markers down to 38, down to the normal patient range, I'm going to allow myself to call their 800 number and start asking questions. Then maybe in 2013, when we're in our new forever home, I could actually schedule a home study. Hey, a girl can hope can't she?
I may be bald and covered in acne. I might not recognize myself in the mirror. I may have daily nosebleeds. I may have to sleep 13 hours every night, but at least I have hope. Those are just inconveniences. I wouldn't even elevate them to the level of "side effects." They are a mere nuisance, and they are a small price to pay for hope.
I realize as I'm writing this that I am getting all excited about just one month's worth of results. I know this is a marathon and not a sprint. I know that things can turn on a dime. But this Thanksgiving, I'm so Thankful for hope. I'm so Thankful for just one more day; just one more year. I don't want to get too greedy. I don't want to get ahead of myself. But I do want to take a moment and enjoy that future so many people take for granted. Thanks, God.
Friday, October 7, 2011
The Importance of October
October is here again and the newspapers are full of opinion pieces about the commercialization of breast cancer. People are arguing, yet again, that we are "pink washed" and that this Breast Cancer Awareness Month takes away from other cancer research.
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
This couldn't be further from the truth. I have been on dozens of drugs that are actively used to treat a plethora of solid tumor cancers like lung, prostate, pancreatic, GI, and liver. Dollars raised for cancer research - any kind of cancer research- are a good thing, period.
It just so happens that pink is a pretty color. Pink resonates with a large segment of the population. Marketing and PR skills, so often used for bad in our country, are finally dedicated to a noble cause. Everyone needs to stop talking, stop criticizing, stop complaining, and simply take action. Stop wasting your breath throwing stones at what is meant to be a positive effort, get off your soapbox, and start taking action for that cancer or cause that stirs your soul. People are dying while we debate the value of the color pink. People are dying- remember that.
There isn't enough pink in this world. Every time someone dies from this terrible, painful, scary disease, another pink ribbon needs to be born. That is why I re-branded my blog for October. Do you like?
As if I needed a reminder, as if I needed another fire lit under my bottom, October 2011 commenced in the Spence household with a harsh reminder of the urgent need for a cure.
Last week, my routine weekly bloodwork showed a sharp increase in my tumor markers. The Good Doctor was concerned; she ordered CT scans. On October 3rd, 2011, I found myself in my familiar CT tunnel fighting back tears.
Here we go again.
My cancer is getting more and more aggressive. The Good Doctor delivered terrible news this week. Instead of two small tumors in my liver, I am now facing a much greater hurdle. There are now "several more" spots in my liver, and the old existing spots have tripled in size. From 7mm to 26mm and 32mm respectively. They also now see spots in both my lungs, and evidence of cancer in my bones. I have small spots in both hip bones and in my low back.
I am scared.
I am looking forward to going to church this weekend. I need consolation and some advice that only prayer can provide. I don't know how to enter this new chapter gracefully. My doctor tells me we are no longer in control. The cancer is in control. We are now the underdog. We now have to fight to regain control.
Don't get me wrong: I plan to fight. I have been screaming at the ceiling. I am only 28. I have only just begun. I have so many hopes and wishes and plans. I want more time. I'm not ready. At the same time, I also don't want to be brave anymore. I don't want to put on a smile and get on with everyday life when I have to fight so hard for every precious moment. I just want to curl up with my loved ones and be cared for. I am tired and I want to stop fighting.
But I can't. There's too much at stake to stop fighting. If breast cancer takes me down, then I'm going to go down swinging.
This October, I'm going to lose my hair for the second time. My wig has been brought out of storage and visited the hairdresser for an update. It stands at the ready in my walk-in closet. It's scaring the dog. She barks at it.
I'll be celebrating breast cancer awareness month with an electric razor and a mirror. How will you be spending your breast cancer awareness month?
Sunday, January 2, 2011
Here's To New Beginnings
Happy New Year, kind readers!
I hope all of you are returning from vacations well rested and ready for 2011. I spent the last two weeks with the Big Man's Family. I completed several good books, enjoyed time by the fire, and kissed the Big Man at midnight.
And yet, it didn't feel like the holidays.
This was my first Christmas away from my family. While the Big Man and I dated, we managed to share Christmas and New Years. The Big Man's aunts and uncles live about an hour away from my family, so I managed to make appearances while still getting a good fix of my own family and enjoying my own childhood traditions. Now that we are married, we are learning to split holidays.
Christmas 2010 was wonderful in that I fully ensconced myself in the Big Man and his traditions. I learned so much about my husband around Aunt M and Uncle E's Christmas Tree.
In my family, we open one gift on Christmas Eve and the rest on Christmas morning. Also in my family, perhaps because we are such a huge Catholic family and each family consists of three, four, or even five children, we really don't exchange gifts with aunts and uncles and cousins. It would get enormous. We do only the immediate family gift exchange.
In contrast, in the Big Man family everyone is recognized with something thoughtful and small, which is really lovely, and makes the gift giving long and drawn out and so sweet. Also, in the Big Man family, all gifts are exchanged on Christmas Eve. There is something wonderful about this tradition.
I find something hopelessly romantic about opening gifts on Christmas Eve in front of a roaring fire, and Christmas Day was spent in simple conversation and a large meal, which was just the relaxation I needed after some busy months at work.
But, while I enjoyed the Big Man Christmas of 2010, this Christmas without my family made me feel like I was stranded on that "Island of Misfit Toys" from Rudolph the Red Nose Reindeer.
I was craving my childhood. I was missing my traditions. I vividly remember the excitement of all four of us waiting on the stairs on Christmas morning as my mother took a picture of all the kids. Mom always insisted on taking a picture every Christmas morning. We were prohibited from venturing downstairs into the toy-laden living room until "The Picture" was taken and until my Dad got his mug of iced tea (neither mom nor dad drank coffee, just iced tea). Dad was painfully slow, wrapping himself in his flannel LL Bean robe and slippers. Sometimes he even made us wait to go downstairs while he took a shower and shaved! I don't know why we didn't dare disobey. We had power in numbers. Four should have easily trumped two. But year after year, even when we were all in college or even graduated college, we all would wake up, stay in our pajamas an pile, in the same age-appropriate order, onto the oriental-carpeted winding staircase and smile for mom's camera.
The digital age actually slowed down the present-opening moment, rather than expediting the process. With a digital camera, Mom could see how miserable her picture was. She could see yawning, closed eyes, particularly bad bedhead. She kept insisting on a second, third or fourth take. And yet, that wait on the stairs was the best emotion of the holiday. More than the elation of the gift-opening and gift-giving, that moment of anticipation was the best part of Christmas morning.
At the same time as my homesickness, holiday 2010 I also had, for the very first time, a so, so very deep desire for my own children. I felt my biological clock ticking for the first time. I felt like I had been hit in the gut as I looked at Big Man holding his newest baby cousin, just seven months old. He was holding the child like a sack of potatoes. He looked petrified and thrilled all at the same time. He had a blissful look on his face and was laughing with his parents, who I could also see were watching this scene with their own desire for a first grandchild. I watched Big Man enjoying his Christmas traditions, I missed my own Christmas traditions, and I wanted deeply to create Christmas traditions of our own for our own little ones. I wanted to see the joys of Santa and Christmas and the first big blizzard of the season through the eyes of our children.
I felt this Christmas like I am stranded between child and adult; stranded on the Island of Misfit Toys.
I don't yet feel fully comfortable in the adult world. Even though I have experienced so much that should make me an adult, even though I am an almost-thirty married woman. Perhaps because my world is a scary one, I still often feel like a child. I deeply and often need my mother and I mourn the loss of my childhood.
The name of this blog, "My Big Girl Pants," actually came out of this feeling. I feel like a child fighting a very adult fight. Whenever I would embark on a scary cancer chapter- be it surgery, chemo, or radiation, scans, results, and recurrences- my mom would hold my hand, stroke my hair, rub my back. I would say to her, "Mom, I can't do it. I don't want to go. I don't want to hurt. I don't want to do this anymore. Why can't this be over?" and she would tell me, "Bridget, you've got to be a big girl again today. You've been through so much, but you've always been my brave one. Did you put on your big girl pants this morning?" We would giggle. Mom would reassure me that she knew I could handle it. At the same time as enjoying the familiar feel of my mother's love, support, and reassurances, I also put on a brave face, planted my feet, stared death in the face, and said, "Bring It."
I am not a fully independent, married woman. A normal, independent, grown woman would look at her husband and say, "Let's make a baby!" The "woman" that I am has been told by her doctors, and realizes herself, that she needs to wait until she has two years of quiet. I need two years recurrence free to have a child or to consider adoption. Two years may seem like a flash in the pan, but I have not had, in my six years of fighting this disease, two straight years without a recurrence. If you ask me, two years is a goal of Everest proportions.
I feel like my life is not totally my own. It might also be exacerbated by the fact that I had scans on December 29th and get the results on January 5th. I'm used to scan-time, but its just too close to the holidays, the timing is so symbolic. I feel powerless to run my own life sometimes.
And so, this Christmas and New Year, instead of feeling content and full of familial joy and anticipation for the future, I mourned the loss of my childhood and I felt like I was living in a no-man's land. Both young and old, both healthy and sick, excited for the future and dubious of its possibilities.
But through all of this self-doubt, another feeling, a very powerful feeling peeped through. I was still very much in love.When Big Man and I returned to our hotel room from Aunt M and Uncle E's, I couldn't help but be swept up in his warmth and joy and hopes for the future. We stayed up way too late talking about our plans for babies and houses and Christmas trees. We talked about exotic warm weather vacations far away from the threat of a Nor'easters. We talked about visions of me in an apron holding a beautiful roast turkey hosting our very own holiday rather than packing up and sitting in the airport. When I look in his eyes, I see the future and I feel so sure of all of it.
As Christmas wound down, I realized I needed, for Big Man's sake, to face the New Year with his same anticipation and hope.
How could I turn my fears upside down? How could I again find the power to face my fear, plant my feet and say, "Bring It!"? I needed confidence. I was far away from my mom and I needed the confidence that she so often brings me.
I lost my hair six years ago while in my first round of chemo. That dreaded pink chemo cocktail took every last whisp of hair and also took my eyelashes and eyebrows. The hair grew back and I was thrilled to find that the short 'do suited me. I am a small person and my tiny little head looked good with short hair. The short "pixie" cut actually brought out my large blue eyes. People commented. My proudest cancer moment came in the airport after picking up the Big Man who was visiting for the weekend when a woman at the baggage claim said she loved my hair and asked for my hairdresser's name. I didn't know what to say. I didn't have a hairdresser. I hadn't had a hairdresser for the past six months of baldness. I gave her the name of my wig-lady.
For the past five years, even though short hair suits me, I have kept my hair long. I have never, ever considered cutting it any shorter than my chin. That would bring back too many memories of baldness. That would bring back that painful memory of sitting in the back room of a salon watching my shocked, pale, tired face in the mirror as a strange woman shaved my head.
So, to celebrate 2011, I stared my fears and memories in the face and I cut my hair. My hair that proudly fell to my mid-chest, the hair that brushed up against my fake breasts. My hair that had some very hip Kim Kardashian like bangs. That hair that I spent hours blow drying, straightening and hairspraying. I cut it. I cut it all.
I feel like an adult, a grown-up woman. I love my hair. I can air dry it and then put in some product. I don't look like a cancer patient as I had feared. I look like a hip, newly married woman who is choosing not to have kids yet because she's busy taking over the world.
So that's how I'm starting 2011. I'm starting fresh. Even though I am scared to death because I had scans on December 29th and get the results on January 5th, even though I feel like cancer is keeping me from living the life I want sometimes, I am looking forward to the future.
I can't wait for 2011! I hope that all of you feel the same.
Here's a toast to new hair and to new beginnings!
I hope all of you are returning from vacations well rested and ready for 2011. I spent the last two weeks with the Big Man's Family. I completed several good books, enjoyed time by the fire, and kissed the Big Man at midnight.
And yet, it didn't feel like the holidays.
This was my first Christmas away from my family. While the Big Man and I dated, we managed to share Christmas and New Years. The Big Man's aunts and uncles live about an hour away from my family, so I managed to make appearances while still getting a good fix of my own family and enjoying my own childhood traditions. Now that we are married, we are learning to split holidays.
Christmas 2010 was wonderful in that I fully ensconced myself in the Big Man and his traditions. I learned so much about my husband around Aunt M and Uncle E's Christmas Tree.
In my family, we open one gift on Christmas Eve and the rest on Christmas morning. Also in my family, perhaps because we are such a huge Catholic family and each family consists of three, four, or even five children, we really don't exchange gifts with aunts and uncles and cousins. It would get enormous. We do only the immediate family gift exchange.
In contrast, in the Big Man family everyone is recognized with something thoughtful and small, which is really lovely, and makes the gift giving long and drawn out and so sweet. Also, in the Big Man family, all gifts are exchanged on Christmas Eve. There is something wonderful about this tradition.
I find something hopelessly romantic about opening gifts on Christmas Eve in front of a roaring fire, and Christmas Day was spent in simple conversation and a large meal, which was just the relaxation I needed after some busy months at work.
But, while I enjoyed the Big Man Christmas of 2010, this Christmas without my family made me feel like I was stranded on that "Island of Misfit Toys" from Rudolph the Red Nose Reindeer.
I was craving my childhood. I was missing my traditions. I vividly remember the excitement of all four of us waiting on the stairs on Christmas morning as my mother took a picture of all the kids. Mom always insisted on taking a picture every Christmas morning. We were prohibited from venturing downstairs into the toy-laden living room until "The Picture" was taken and until my Dad got his mug of iced tea (neither mom nor dad drank coffee, just iced tea). Dad was painfully slow, wrapping himself in his flannel LL Bean robe and slippers. Sometimes he even made us wait to go downstairs while he took a shower and shaved! I don't know why we didn't dare disobey. We had power in numbers. Four should have easily trumped two. But year after year, even when we were all in college or even graduated college, we all would wake up, stay in our pajamas an pile, in the same age-appropriate order, onto the oriental-carpeted winding staircase and smile for mom's camera.
The digital age actually slowed down the present-opening moment, rather than expediting the process. With a digital camera, Mom could see how miserable her picture was. She could see yawning, closed eyes, particularly bad bedhead. She kept insisting on a second, third or fourth take. And yet, that wait on the stairs was the best emotion of the holiday. More than the elation of the gift-opening and gift-giving, that moment of anticipation was the best part of Christmas morning.
At the same time as my homesickness, holiday 2010 I also had, for the very first time, a so, so very deep desire for my own children. I felt my biological clock ticking for the first time. I felt like I had been hit in the gut as I looked at Big Man holding his newest baby cousin, just seven months old. He was holding the child like a sack of potatoes. He looked petrified and thrilled all at the same time. He had a blissful look on his face and was laughing with his parents, who I could also see were watching this scene with their own desire for a first grandchild. I watched Big Man enjoying his Christmas traditions, I missed my own Christmas traditions, and I wanted deeply to create Christmas traditions of our own for our own little ones. I wanted to see the joys of Santa and Christmas and the first big blizzard of the season through the eyes of our children.
I felt this Christmas like I am stranded between child and adult; stranded on the Island of Misfit Toys.
I don't yet feel fully comfortable in the adult world. Even though I have experienced so much that should make me an adult, even though I am an almost-thirty married woman. Perhaps because my world is a scary one, I still often feel like a child. I deeply and often need my mother and I mourn the loss of my childhood.
The name of this blog, "My Big Girl Pants," actually came out of this feeling. I feel like a child fighting a very adult fight. Whenever I would embark on a scary cancer chapter- be it surgery, chemo, or radiation, scans, results, and recurrences- my mom would hold my hand, stroke my hair, rub my back. I would say to her, "Mom, I can't do it. I don't want to go. I don't want to hurt. I don't want to do this anymore. Why can't this be over?" and she would tell me, "Bridget, you've got to be a big girl again today. You've been through so much, but you've always been my brave one. Did you put on your big girl pants this morning?" We would giggle. Mom would reassure me that she knew I could handle it. At the same time as enjoying the familiar feel of my mother's love, support, and reassurances, I also put on a brave face, planted my feet, stared death in the face, and said, "Bring It."
I am not a fully independent, married woman. A normal, independent, grown woman would look at her husband and say, "Let's make a baby!" The "woman" that I am has been told by her doctors, and realizes herself, that she needs to wait until she has two years of quiet. I need two years recurrence free to have a child or to consider adoption. Two years may seem like a flash in the pan, but I have not had, in my six years of fighting this disease, two straight years without a recurrence. If you ask me, two years is a goal of Everest proportions.
I feel like my life is not totally my own. It might also be exacerbated by the fact that I had scans on December 29th and get the results on January 5th. I'm used to scan-time, but its just too close to the holidays, the timing is so symbolic. I feel powerless to run my own life sometimes.
And so, this Christmas and New Year, instead of feeling content and full of familial joy and anticipation for the future, I mourned the loss of my childhood and I felt like I was living in a no-man's land. Both young and old, both healthy and sick, excited for the future and dubious of its possibilities.
But through all of this self-doubt, another feeling, a very powerful feeling peeped through. I was still very much in love.When Big Man and I returned to our hotel room from Aunt M and Uncle E's, I couldn't help but be swept up in his warmth and joy and hopes for the future. We stayed up way too late talking about our plans for babies and houses and Christmas trees. We talked about exotic warm weather vacations far away from the threat of a Nor'easters. We talked about visions of me in an apron holding a beautiful roast turkey hosting our very own holiday rather than packing up and sitting in the airport. When I look in his eyes, I see the future and I feel so sure of all of it.
As Christmas wound down, I realized I needed, for Big Man's sake, to face the New Year with his same anticipation and hope.
How could I turn my fears upside down? How could I again find the power to face my fear, plant my feet and say, "Bring It!"? I needed confidence. I was far away from my mom and I needed the confidence that she so often brings me.
I lost my hair six years ago while in my first round of chemo. That dreaded pink chemo cocktail took every last whisp of hair and also took my eyelashes and eyebrows. The hair grew back and I was thrilled to find that the short 'do suited me. I am a small person and my tiny little head looked good with short hair. The short "pixie" cut actually brought out my large blue eyes. People commented. My proudest cancer moment came in the airport after picking up the Big Man who was visiting for the weekend when a woman at the baggage claim said she loved my hair and asked for my hairdresser's name. I didn't know what to say. I didn't have a hairdresser. I hadn't had a hairdresser for the past six months of baldness. I gave her the name of my wig-lady.
For the past five years, even though short hair suits me, I have kept my hair long. I have never, ever considered cutting it any shorter than my chin. That would bring back too many memories of baldness. That would bring back that painful memory of sitting in the back room of a salon watching my shocked, pale, tired face in the mirror as a strange woman shaved my head.
So, to celebrate 2011, I stared my fears and memories in the face and I cut my hair. My hair that proudly fell to my mid-chest, the hair that brushed up against my fake breasts. My hair that had some very hip Kim Kardashian like bangs. That hair that I spent hours blow drying, straightening and hairspraying. I cut it. I cut it all.
 |
| New Year's Eve 2011 |
I feel like an adult, a grown-up woman. I love my hair. I can air dry it and then put in some product. I don't look like a cancer patient as I had feared. I look like a hip, newly married woman who is choosing not to have kids yet because she's busy taking over the world.
So that's how I'm starting 2011. I'm starting fresh. Even though I am scared to death because I had scans on December 29th and get the results on January 5th, even though I feel like cancer is keeping me from living the life I want sometimes, I am looking forward to the future.
I can't wait for 2011! I hope that all of you feel the same.
Here's a toast to new hair and to new beginnings!
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