Wednesday, December 26, 2012

Right Place Right Time

Over the past six years of my cancer journey, I've never, thank god, been at a loss for luck. No doctor thought I'd make it this far, and I know deep down that I have each and every one of you to thank for getting me here. Never was my luck more on display than the morning after I awoke from 8 hour long surgery having a new Pleurx catheter placed in my chest. You made this technology possible, and this technology was keeping the cancer at bay in my heart. You were responsible for draining the cancerous fluid that was compounding in my lungs. You were helping me to take every single breath. With every breath I have each of you to thank.

My doctors needed your help too, and they received it. Each time my cancer was exposed to a new chemo drug, my cancer got smarter. Every time my cancer has gotten smarter, we've needed to find a new drug to combat it. The morning I received my Pleurx catheter, also happened to be the morning when I opened up the "Dana Farber Report" and saw this little news snippet.

"Susan G. Komen for the Cure grants $315,000 to Dr. Lein Chen for research into PI3K pathway." That Monday morning also happened to coincide with a visit from my doctor informing me that I had been selected for a clinical trial, a clinical trial looking into a new drug that would inhibit my cancer's ability to grow along a specific - PI3K pathway. Talk about right place at the right time!

Susan G. Komen was planning to go one step further with me though. Never one to stop in just one place, Komen wants to partner with me to help educate the public about clinical trials. Enrolling in this trial was not an easy decision. My life was put on hold and, while that seems like an obvious choice, it may not be an obvious choice for every patient. What are we fighting for? How long do we fight? How much money do we spend fighting? What does our life living and fighting with cancer look like?

To enroll in this clinical trial, I visited Dana Farber every single day, from 7am until 9pm. Over the ensuing six weeks, my cancer shrunk 12%. But then, two weeks before Thanksgiving, I found myself in an ambulance, headed to the hospital because of problems with my heart and lungs.  My body could no longer handle the clinical trial. I just couldn't do it.

The trial bought me time, and I was able to spend Thanksgiving and Christmas with my family and friends. But now, I face the reality that the battery of treatments can no longer keep my cancer at bay.

So now here we are. We have made it from Halloween, to Thanksgiving, and now we are celebrating Christmas. (The Big Man bought me a gorgeous diamond ring for Christmas!) Even as we celebrate, my year has, yet again, revolved around cancer. But I'm not complaining. I am thanking you. I thank each and every one of you for getting me here. I'm going to ask now for just one more favor.

It is time for me to ask each of you to let me go. It is time to say goodbye.

Over these past six weeks, my ability to breathe has been compromised. Every breath is a struggle. I cough all night and most days. I am exhausted. My mother and brothers have flown in to help.  I'd like to stop working and go enjoy a nice cold drink with my husband on a beach somewhere. I want some time alone with him. Time without doctors appointments and scans, without work, just the two of us. No PI3K pathways. No trials. No hospitals. Just Bridget and her Big Man.

So thank you. Thank you for fighting with me over these past six years. Thank you for hoping with me. Walking every step of the way alongside me. I couldn't have done this without you. I wouldn't still be here if it weren't for each and every one of you and the dollars you have raised in my name.

Please, don't forget about me.

Sunday, October 7, 2012

Matters of the Heart

People call me brave and strong and inspirational. Generally speaking, I don't believe these compliments. I am simply trying my best to live a normal life in the face of great adversity, and there are tens of thousands of other patients and caregivers doing the exact same thing every day all around the world. There are hundreds of my blog readers who are just as brave, strong, and inspirational - they simply choose to battle quietly.

Furthermore, I know that all of you who've not been touched by tragedy, when challenged, would behave much the same as I have done.

That said, this week I do feel awfully brave. I am proud of myself. This week I feel like a grown up. I am wearing my big girl pants.

It all started Labor Day weekend. I was having some girlfriends over for brunch and, like any hostess, was rushing around trying to get things in order. Everything had to be perfect, and I was down to the wire. I was rushing around hiding dog toys, putting away laundry, finishing a quiche, arranging flowers. Running these last minute errands, I was running up and down the stairs a lot, and I noticed I had to sit down and catch my breath after each trip upstairs. I felt weak and short of breath. I thought I was perhaps coming down with a flu.

Over the course of the next several weeks, the breathlessness got worse. Lying in bed at night, I would cough uncontrollably. Coughing would wake me up in the middle of the night and I could hear wheezing in my throat. I sounded like I was 90 years old. My dog looked at me with concern and sniffed my face after my coughing fits. Something was wrong.

Monday, September 17th I was due for my third infusion of this new drug cocktail - Herceptin, Docetaxol, and Pertuzumab, and we were getting wonderful news so far. This drug cocktail was working! Over the course of several weeks my tumor markers had fallen from 1,133 to 387 and from 8,813 to 2,762! I was optimistic and encouraged. I was losing my hair, I was coughing and wheezing and feeling sick, but all of this was totally worth it if it meant I was winning!

I expressed concern about my breathlessness to my doctor in the hopes that she would have some prescription medication she could give me to quell the cough. I had tried Vick's Vapo Rub, I had stood in a steaming shower and had taken eucalyptus baths. I was thinking of investing in a humidifier. Nothing had worked so far.

The cough that I thought was not a big deal, apparently could be a big deal, because the doctor got very serious, cancelled my Monday infusion, and booked me for a series of tests on my heart and lungs instead.
The next morning at 7am, I showed up for an Echo cardiogram (read ultrasound) of my heart. I have had Echos before and always passed with flying colors. I saw this as a precaution and was looking forward to receiving my miracle drug on Wednesday after passing this silly test. I drove myself to the appointment. I don't even think I told Big Man or mom about the appointment because I simply assumed it was a precaution. Boy, was I wrong.

Two hours later, I was in an ambulance being rushed to Brigham and Women's Hospital for emergency heart surgery.

The Echo technician told me I had fluid around my heart, also called a pericardial effusion. The fluid was pressing on my heart, making it difficult for my heart to beat, which explained my breathlessness and general fatigue. I was in a daze, more concerned about what was going to happen to my car that had been left at the Echo location than what was going on in my chest. I was strapped onto a guerney, and reluctantly asked the EMT to pass me my cell phone. I said to the EMT, "I suppose I should call my husband and my mom, huh? This pericardial whatever is going to take probably a few hours to handle, right?"

He looked at me like I had three heads and responded, "Yeah it's going to take at least all day today, ma'am."

"Really, all day? Are you sure? Because I really don't want to have to call in sick to work? I had a really full day."

The EMT looked around the back of the ambulance in the hopes of finding some help dealing with the insane cardiac patient. "Ma'am, you are being rushed to the hospital for emergency heart surgery. I think you need to take a day off work. You should probably call....everyone."

Emergency heart surgery? What in the world? I'm 29! I feel fine, I swear!

It wasn't until I started making phone calls that reality set in. As I spoke to Big Man and said, "You need to come to the Brigham. I have fluid around my heart." That was the moment when my voice cracked and I broke down. The EMT looked relieved.

Big Man fled from work, his boss agreed to dog sit (we love you, Bee!), my mom was booked on the next flight from Baltimore to Boston.

Just when we thought progress was being made in my fight against cancer, it turns out this sneaky beast had gotten right to the heart of the matter. My cancer has metastasized to my heart. Even though the drug cocktail was working on my liver so beautifully, it is possible for a drug to work on one organ and not on another. Doctors called this a "mixed response."I had been afraid of cancer for years, but never before had the fear struck so deeply, and felt so serious. I had cancer in my heart? I didn't even know that was possible!? My heart, the very thing that makes me this small, passionate, headstrong young lady. My heart, that beats so strongly when I get hugs from my husband. My heart that feels like its going to burst when I watch my niece Annabelle waking up from a nap. My heart....the door to my soul, my very essence, that thing that we just assume will always keep beating. My heart has cancer. Wow.

The doctors put a drain into my pericardium - the thin lining around my heart. They drained out 600 millileters of fluid. The young residents were in awe of me, "how were you doing yardwork and taking the dog for a walk with 600 mL around your heart? I'm surprised your still standing! Man, 600mL." The cardiac surgeons were more professional, "You had a 'rather large' pericardial effusion."

To make matters worse, during my heart surgery and the battery of tests before and after surgery, they saw a build up of fluid in the sac around my lungs - that would also need to be drained.

I had two surgeries and spent more than a week inpatient in the hospital. The whole week was a complete blur. I went into the hospital a "relatively" healthy 29 year old who had just spent Labor Day weekend sitting poolside in a bikini. I left the hospital with a clear plastic tube hanging from the right side of my abdomen. A permanent drain that was inserted into the lining of my lungs. It will clear out any more fluid from my heart and lungs that the cancer deposits there. I suppose I should load up on one-piece suits and finally part with those midriff baring cut-off t-shirts I have held onto since college!

I also left the hospital with a new appreciation for how I do NOT want to spend my last few months of life. I want to fight this cancer with all that I have. I want to exhaust every possible clinical trial and FDA approved drug. As long as I can stay in fighting form, I will fight with all the might my impaired little heart can muster, but I do not want to end up saying goodbye to my family from a hospital room, in a strange itchy bed with lots of beeping machines, fluorescent lighting, and no view from the window to speak of, where the only company is coming from Dr. Phil on the small tv screen in the corner. No, I want to say goodbye in the comfort of my own home, the home that I have fought so long and so hard to establish with my Big Man. My home that is full of my smells and my love and my sweat and tears. There is really no place like home.

I am home now and am so happy and content. You all aren't going to be getting rid of me just yet. I am getting comfortable with this Pleurx drain. I can empty it myself now and it doesn't hurt as much as when they first inserted it. More importantly, now that I am actively draining this fluid, I no longer get breathless or cough uncontrollably. I am starting to cook and clean and play with the dog as before. Also, oddly enough, even though my heart and lungs almost gave out on me  last week, my liver is functioning beautifully! I have been accepted into a clinical trial! We just started this week and I'm feeling really optimistic about the sounds of these drugs. More to come on that front as we learn more in the coming weeks, but just know that I am still fighting.

Next weekend is the 2012 Susan G. Komen Washington DC 3-Day. With the support of an incredible organization called Check Your Boobies, a non-profit organization I started working with last year that educates women about breast health in a frank, fun, and fear-free manner, I have reached my $2,300 fundraising goal! My mom, my younger brother, my uncle and cousins, my dear friends from Concord, MA, from Baltimore, MD, and from Florida, we are all walking together on team Million Dollar Babies, and come hell, high water, or even heart surgery, I will be walking with them! I leave this Wednesday evening for the DC walk. I get tired really easily as I am still recovering from the surgery, so I'll probably only walk a little bit each day, but I plan on crossing the starting line Friday and crossing the finish line every single afternoon, hand in hand with my family and friends. I'm still here, still fighting, still loving, laughing, and, above all, I am still living... fully.... with cancer.

As October begins, a new chapter in my cancer journey has also begun. Yet again I am humbled by this disease. Yet again, my journey has gotten even harder, and yet I've come through it and found myself back at home surrounded by love and comfort and I'm feeling good when I wake up in the morning. I don't know how or when this story will end, for a minute there in September I thought my story was over, but because of Pleaurx catheters and good doctors and clinical trials that all of you have made possible, I'm still hopeful. I still have a little more time. I'm not giving up.

I hope none of you give up either. If I can continue to cook dinner, work full time, and strive for a personal best on the Susan G. Komen 3-Day, surely each of you can do something with your day or with this month, or with the rest of this year that will positively impact the fight against cancer.

I can't wait to update you at the end of this month with good clinical trial news, because I know my heart is strong enough to fight the cancer that has taken up residence there. 

Tuesday, August 28, 2012

Moving Forward Past Heartbreak

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.

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:

          “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, February 10, 2012

I Stand With Susan G. Komen

Many of my friends, family, and blog readers have approached me over this past week because anyone who knows me knows I am in love with the work of Susan G. Komen for the Cure; I am a walker, a survivor, and a 3-Day Coach. Last week, when the news broke that Komen for the Cure decided to cease future funding of Planned Parenthood, thousands of women and men hit the internet to object. I will not revisit last week’s media firestorm. Plenty of people have already done more than enough recapping of every twist and turn.

Instead, I will share the reasons why I continue to support Susan G. Komen for the Cure. I will include links to absolutely everything I mention, so that anyone interested in learning more can learn more, and can do so by going directly to the source.

When I was first diagnosed with Stage IV breast cancer in 2005, I went to events put on by various other breast cancer organizations. At those events, I was surrounded by women with gray hair and grandchildren. I came home in tears, and felt so much older than 21 years old. Other organizations left me, a young cancer survivor, feeling so very much alone.

Deb, a 30-something breast cancer survivor, changed all that for me. It wasn’t until Deb, a spunky little gal with flowing brunette hair, a sweet Southern drawl, and two little boys, stopped by my chemo chair one day that I finally realized I wasn’t alone at all. You see, Deb stopped by chemo to drop off literature about her support group called Breast Friends, a support group funded in part by Susan G. Komen’s Maryland Affiliate. Breast Friends was a support group for women under 40 who had been diagnosed with breast cancer. At the time, I didn’t even know there were other women under 40 with breast cancer, and this same wonderful Deb didn’t just offer support. She also offered education. Deb was the first to say, “Bridget, you should tell your story. You should go to schools and tell your story. You could save some lives.” So, you see, Komen gave me support and Komen gave me a voice.

Komen’s impact on my journey didn’t stop there. In the past six years, I have seen 10 different doctors about this cancer, and, while every doctor saw my concerns about having babies and getting married as understandable concerns for someone in her 20s, no doctor actually took those concerns to heart. No doctor, that is, until Dr. Ann Partridge at Dana Farber Cancer Institute. Dr. Partridge, or “The Boss” as she is known around my house, never told me to “worry about that later.” Instead, she helped me take action to preserve my fertility. She offered to plan my chemotherapy around my wedding and honeymoon. She offered me a chemotherapy drug that wouldn’t cause hair loss, so that I’d look my best when I walked down the aisle. She even offered to answer any questions my soon-to-be husband might have about my cancer before the Big Day. Now that’s a doctor! Dr. Partridge is the kind of doctor who thinks about the well being of the patient and the well being of the caregiver.

I am proud to say that Dr. Ann Partridge’s Young Women’s Program was funded by a three-year $1.35 million Susan G. Komen for the Cure grant. Not only that, but in addition to providing this program to lucky Dana Farber patients, this Komen grant allows “The Boss” to implement her Young Women’s Program in hospitals across the country, so that every young woman can get the same stellar, personalized care I’ve received regardless of where she happens to live.
So, as you see, I was supported by Komen, I was empowered by Komen, and I was cared for by Komen. But, have I been cured by Komen?

The Cure
I can honestly say: I wouldn’t be alive today if it weren’t for the research of Susan G. Komen for the Cure.

I have been on 15 different drugs during my six year battle, and every single one has been touched by a Komen for the Cure grant, including Herceptin. Herceptin is a drug that targets my particular type of breast cancer and, in clinical trials, Herceptin has been found to reduce the risk of relapse by almost 50%. Herceptin has been the one constant in my dozens of “chemo cocktails.” Herceptin is in my current cocktail; it’s being used in combination with my friend Taxol. Herceptin is not a cure, but Herceptin is keeping me alive, and Komen gave me Herceptin.

But that’s the past. What about the future? Well, I can tell you that currently, Komen is funding 572 research projects totaling more than $300 million worldwide. In 2009, “The Boss” referred me to a clinical trial led by Dr.Leisha Emens at Johns Hopkins University. Dr. Emens is developing a vaccine that teaches a patient’s immune system to fight her breast cancer on its own, and the trial is having some fantastic results. While I was unable to get the vaccine because my cancer began progressing unexpectedly, I believe this vaccine idea could truly be the future of breast cancer care. Dr.Emens’ trial was funded in 2006 by a $300,000 Komen grant. To learn more about the other exciting clinical research that Susan G. Komen funded last year alone, click here.

I Will Walk
Last Wednesday, when this news first started breaking in the media, I was at the hospital getting chemotherapy. I thought that was pretty ironic…my afternoon was about to get even more ironic! That afternoon in the hospital actually helped me deal with the onslaught of unsettling news stories. Last Wednesday, during a routine blood draw, I found out that the tumor markers in my blood had increased from 75 to 99, a preliminary sign that my chemotherapy regimen might no longer be working. When the whole world began debating and questioning Susan G. Komen’s work, my cancer turned out to be a gift. I needed a reminder, and this news was a poignant reminder. I was able to see that, for me personally, the news about Susan G. Komen mattered, but it didn’t matter enough to sway me from the heart of why I walk.

So what did I do after I learned that my tumor markers rose from 75 to 99 last week? How did I cope with the news? I registered to walk in the 2012 Susan G. Komen Washington, DC 3-Day.

I walk because I have to go to chemotherapy every week, and I don’t want anyone else to have to live that life. I walk because I live with the heavy burdens of fear and doubt every day, like the fear and doubt piercing my heart tonight as I think of my rising tumor markers. I walk because I know that over the past 6 years I have been on 15 different drugs, and all 15 of them were touched by a Susan G. Komen grant. I walk because, while there are other charities out there, no one comes close to funding research the same way Komen does.  I walk because this cause is too important to walk away. I walk because today someone is going to die from breast cancer, and I walk because I don’t want to die from breast cancer.
No other organization has had my back like Komen for the Cure, and now it’s time for me to return the favor. Together, we will move past this. I believe we have already started moving, and I believe we are moving forward. I believe we will come out of this better, wiser, and stronger than before.

I hope each of you will be walking beside me this October, but I understand if that’s not the case, and I respect and support that. I wish all of you all the best. You are important to me, and I thank you for your service to this event and to the fight for a better world.

Monday, January 30, 2012

Counting My Blessings

This past holiday season saw me simply blown away and counting my blesssings. When I left all of you at Thanksgiving, my tumor markers were up at 183. My tumor markers are now down to only 75. I had a scan at the beginning of the month to find out if the cancer was indeed shrinking as much as the tumor markers indicated. I am so thrilled to report that this week I received word that everything - the cancer in my bones, my lungs, my liver, my lymph nodes - everything is shrinking!

The most significant shrinkage was seen in my lymph nodes and my liver. One tumor in a lymph node previously measured 2.2cm X 1.3 cm. That tumor has now shrunk to 1.3cm X 0.7 cm! The tumor in my liver used to measure 4.4 cm X 3.7 cm and now is 3.7 cm X 2.5 cm! Taxol is indeed working. My body is healing. I am still far from cancer free, but there are no shades of gray or mixed messages. I was worried for months that cancer in one part of my body would shrink away, but that cancer somewhere else would stay stable, or worse, even grow. But now, all around I have only good things to celebrate.

That said, my blog has been so helpful and healing for me. It has truly allowed me to come to terms with the realities of my journey. This same time last year, I was also over the moon and enjoying the positive results from the TDM1 clinical trial. I was just as happy and optimistic for the future on New Year's 2011 as I am now on New Year's 2012.

I realize now more than ever how lucky I am to have more time. In October, I didn't think I had much time left. My, how up and down this year has been. All of this positive progress could all change tomorrow, it certainly has before. While it is wonderful and natural to dream of children and a house with a yard, I also should simply enjoy the small blessings I already have in my life.

Please indulge me for a moment while I catalog a few of my most recent blessings:

1) Last week, I watched Daisy experience her first snowfall.

At first she was extremely fearful, sitting down at the door and barking at the falling flakes. Slowly she ventured out onto our patio, but every few brave steps she took, she'd run back between my legs. After an hour or so of sniffing and barking, a light seemed to switch on in her little dog brain. All of a sudden my girl figured out she had nothing to fear. Daisy spent the remainder of the morning  running around outside, bouncing everywhere with puppy joy. She stuffed her face into piles of snow and literally jumped off of our back steps into snow drifts. It was a joyful, puppy-filled day in our house, and by the end of it the house was a mess! I didn't care though. Watching a living thing that is under your care grow, change, and learn is really beautiful. I know she's only a dog, but she's truly remarkable.

2) I love my job, and I'm good at it.

All this month, I have had the pleasure of hosting Susan G. Komen 3-Day Get Started Meetings throughout the Boston area. I get to meet nervous new walkers, and talk people into joining me in the fight for a cure. It has been so exhilarating to hear other people's stories and to share my own. I get a thrill as I watch, first hand rather than online, as eyes get wide in the audience when I share my story. Heads shake and tears fall. Seeing that my struggle can convince an otherwise unmoved attendee to walk 60 miles and raise thousands of dollars has been exciting and humbling all at once. I am excited because I feel I am really making a difference in this world, and it has been humbling because I don't believe I am worthy of the love and support my 3-Day walkers have given.

Last night, I met a woman about a year younger than I whose mom was diagnosed over Christmas with Stage IV breast cancer. After an evening of crying together, I'd like to think she went home hopeful.  I don't think she realized that I also gained so much from hearing her story. I wasn't crying for her. I was crying with her. I know all too well the horrible Christmas her family had this year because of breast cancer. I cried at that 3-Day meeting because, meanwhile, I had the best Christmas of my entire life. It felt so unfair, but I was  thankful to have been reminded of my good fortune.

3) And now, on to Christmas...Christmas in Prague and New Year's in Vienna. There aren't words descriptive enough nor pages long enough to describe my trip with the Big Man to Europe.  The trip was beyond our expectations. We were both full of nerves the night before our departure. This trip was taking a big dent out of our savings - savings we were planning to spend on that house with a yard or on IVF treatments to make that baby of our dreams. We both were nervous that we were spending this money on something silly. We hoped we had made the right decision. From the moment we took off, though, our fears disappeared. The adventure began on the plane as we held hands and toasted Merry Christmas over our in-flight dinner. It was wonderful to leave the world behind and experience a new reality hand-in-hand. No cancer, no appointments, no health insurance paperwork to sift through,  no juggling a hectic schedule- only the thing that matters most...time together as a husband and wife. For one whole week we reconnected. Given all the fear and doubt, all the ups and downs of the past two years that we have tried to face with a smile, we realized that this wasn't money wasted on an extravagance. This was an investment. An investment in our marriage. An investment in making memories. Memories that will carry us through any other bad times to come.

4)My final blessing is one particularly special night from our trip. One night in Vienna, we were wandering the streets in search of a restaurant. I was grumbling because Big Man was walking too far ahead of me and because I was struggling on the cobblestone streets and sidewalks in heels. It was cold and I was cursing the quaint but impractical cobblestones. We had tickets to the Opera and we only had an hour and a half left. Our tummies were empty from a long day of sightseeing, and we were both grumpy and concerned that we would be late for the Opera. We were short with one another. Voices may have been raised.

Finally, we found a restaurant name we recognized from our trusty Rick Steve's Guidebook. We walked out from the cold and into a total time warp. We were in the Vienna of the 1800's.  The restaurant was all dark wood panelling with moose heads on the wall. The waiters wore liederhosen. The food that went by us on a tray was all meat, potatoes, and rich dark sauces. We were seated in a deep booth next to a table full of 90 year old men. The youngest might have been 89. They were all smoking and drinking and toasting and talking loudly in German. For some reason, I didn't mind the smoke. No one else was smoking, only this old table full of regulars who had probably been coming to this restaurant since World War II.

As the men raised a glass for their fifth toast of the evening, I raised mine too, and, opening the Guidebook to its page of commonly used phrases, I wished them a good evening and said I loved Vienna. The whole table turned and started speaking excitedly in German. I looked to Big Man, who shrugged and was laughing at my attempts to communicate. But a smile and a raised glass is universal, and they were patting our backs and trying to include us in their conversation for the rest of the evening.

Our Seats!
After an incredible meal that had Big Man and I making eager grunts to one another over our enormous plates of goulash, we left our WWII  buddies and made our way to the Opera. Big Man no longer walked too fast. He held my hand the whole way. We were full and warm from wine, and we arrived at the Opera right on time. Our seats, which could have been anywhere at all since I had bought them online on a website that was all in German, ended up being in the front row of a balcony box from which we saw everything. Big Man complimented me on my planning abilities. As the first strains from the Marriage of Figaro began, I started crying quietly. I was overwhelmed by the joy of being alive.

After the Opera we went out for Viennese coffee and some of Vienna's famous Sacher Torte. I cried again over the beauty of this  piece of perfect chocolate cake filled with jam. To make a perfect night even more perfect, as we started walking back to our hotel, it started to snow ever so lightly. I think the snow hid my third round of tears.

It is now no longer the holiday season. The Spences are back in America and back to work. We are back to reality. Now, instead of the joy of Christmas season, it is the bitterness of campaign season. This Presidential Campaign has been full of talk about Healthcare reform, an issue that means a lot to me. The debates and discussion in the news  have brought a lot into focus for me.

I know all too well how lucky I am to be responding to Taxol. Even though I'm bald, I'm doing really, really well. I have no complaints today. I do realize that this drug might only work for 3, 4, 6, or 8 months. Is $7,000 a week too much to ask for for only 3 more months of life?

 There have been some news reports lately that have made me feel about this big. Like the one I heard on NPR last week about how the "sickest 1% of patients" are responsible for the "lion's share" of healthcare spending. Recently, news about new and exciting cancer drugs often includes details about just how expensive those drugs are. It seems as though I have to justify the care I'm receiving.

When I heard an audience at a Presidential Debate cheer the prospect of letting a sick man die if he couldn't pay for coverage, I again felt this big. I work full time and can pay for my coverage, thank God. But what other difference is there between myself and that theoretical sick man?

Happy Couple in Prague
Thank you Taxol!
Several breast cancer drugs, most specifically the drug Avastin, have had their FDA approval revoked recently because they didn't improve patients' lifespans long enough in studies.  Yet dozens of women appeared at the FDA hearings to share their stories of miraculous recoveries on these drugs. While I am not on Avastin, a similar FDA rejection of my previous drug TDM1 was also in the news this year.

I am struggling to reconcile my overwhelming feelings of joy and the incredible blessings of my past three months with the energy of the nation to which I returned home. Who gets to decide which is precious enough...three months or six months???

These past three months have been my best three months ever. I feel I am no longer a girl. I am a happily married woman. I am so thankful for how far I've come, and I am thankful for Taxol for giving me that chance. No matter how long this blissful time of shrinking lasts, I'm glad for it, and I would pay any amount of money to receive it.

Time is a blessing. I can never have enough time.