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.

Deb

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.

Ann

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.

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?

Victory!

I hope my blog silence hasn't led you to believe that I dropped dead during my 60 mile walk! Far from it, in fact. The Big Man and I walked every step together. We crossed the finish hand in hand. We are victorious!

I am not sure how to sum up our 3-Day for the Cure weekend in a way that will do it justice. All I can say is that, over the course of those 60 miles, Alex and I fell in love all over again.

You see, the Big Man and I had only been dating about six months before my diagnosis back in 2005. We were still getting to know one another and then this huge cancer thing was thrown into our laps. Over the past six years, we have done a little dance when it comes to my cancer. I want him to be involved, but I also want to be independent. We want to communicate about complicated emotional issues and we don't quite know how. He wants to get involved and help, but at the end of the day, this cancer journey is mine.

The most difficult step to learn in this cancer dance has been that my man wants to make it all better and take the pain away. We are learning that is impossible. Every day is a new chapter in our relationship. Every day is a learning experience. It can be beautiful, but it is so hard.

The 2010 Susan G. Komen DC 3-Day for the Cure was the high point of our relationship, the culmination of all our hard work. We embarked on the journey still doing our little "figuring this all out" dance, but we left totally in sync. It could have gone either way. I was so nervous that he would hate the walk or wouldn't get the emotion behind it. I should have had more faith in my man's heart. I should have had more faith in how he understands my struggle and appreciated more that he is dealing with a struggle all his own. He may not come to every appointment because there are simply too many, but he feels deeply every ache, pain and every set back.

Each day we were both pleasantly surprised at how much we enjoyed walking and talking together and we were shocked that we could laugh until we cried and come up with brand new nicknames for one another. Our team, The Million Dollar Babies, was perfect. The perfect amount of support and encouragement and comic relief, and it was a large team so that we could have our own private journey as a couple, but we were never ever alone.

As we walked across the finish, Alex looked at me and smiled and said, "Congratulations, Little One." Next to the words, "I Do," that was the sweetest phrase I've ever heard. Alex was proud of me. I was proud of him. We were both in incredible pain!

When we left the 3-Day Sunday night we were no longer those two people traveling the same difficult road. Instead, we left as one person looking forward confidently toward the future.

They say a picture is worth a thousand words, so, without further ado:


The Big Man and Big Girl 3-Day for the Cure journey



music courtesy of Ingrid Michaelson: "Soldier." Everybody. 2009.

Susan G. Komen 3-Day for the Cure

October has begun. The one month of the year when the entire world seems to join me on the crusade to which I dedicate every waking moment all year round.

I love and loathe October all at the same time. I love all of the pink everywhere I turn. I get joy from seeing pink toilet paper, although I don't buy it because the Big Man has forbidden me from bringing any more pink into the house. When I came home with a pink laptop, he drew a line!



My friend and fellow fighter Courtney
She lost her battle at only 25 years old

 Some detractors complain that companies use the pink color to increase sales without actually making any real commitment to the fight against breast cancer. Others argue that selling pink items gives individuals the idea that fighting breast cancer is easily done. These arguments don't bother me too much because I recognize that the world is made up all kinds of people.

As they say, it takes a village.

Not everyone will want to walk, run, or advocate. Very few people will write a letter to a senator or congressman. Very few people will write a check. Even fewer people will actually volunteer their time. But everyone can buy pet food, razor blades, chocolate and jewelry. I don't fault the shoppers for their lack of commitment. Perhaps they are lucky enough to have never been touched by cancer. Or, consider perhaps that they have been touched, but are so emotionally exhausted by the trauma that all they can bear to commit is an anonymous purchase thrown in with all the other week's groceries.

That is OK.

You choose your level of commitment, I've chosen mine.

To the detractors who say that some companies don't donate the sales from pink items, I say: yes! That is an issue that needs to be policed,  but regardless of the tiny amount or even complete lack of a donation, the pink toilet paper does raise awareness. It does get people talking, it does make a consumer pause, and it does make people aware. It also might be the first step in a longer journey. Perhaps the exhausted survivor starts by throwing pink razor blades into her cart. The next year she throws razor blades and goes out of her way to fly with an airline that supports Susan G. Komen for the Cure. This year, she takes it a step further and buys Nancy Brinker's new book "Promise Me." Then she is inspired. Next year, she runs a race. The year after that, she registers for the 3-Day and raises thousands of dollars.  All it took was one pink razor blade and time.

And so, I love October with all of its pinkness and overwhelming, hectic pace. I relish this rare moment when everyone rallies behind me, this entire month when I see people in front and people behind me in line at the grocery store all with pink items in their cart.



 Just as the Christmas season overflows with songs, family, and good cheer, I feel like October is ripe with opportunities for support, education, and hope. No matter male or female, young or old; no matter race, creed, socioeconomic status, or connection to the cause, for four short weeks every year, everyone is behind me in my fight.

My major problem with October is October 31st, when everyone stops rallying behind me while breast cancer keeps killing.

That is where the Susan G. Komen 3-Day for the Cure comes in. That is where I get my fix of support and hope year round. Although the event is truly a sacred experience for me, and although Big Man and I have prepared all year for our journey, I have waited months to talk about my 3-Day for the Cure experience here because I worry that I will not do it justice. But today I will try.

2008 San Diego 3-Day Survivor Circle with Saralyn and Jennifer

I walk in the Komen 3-Day for the Cure every year. Even though I am a seasoned participant, and although some people dismiss it as just another fundraising event, I get deeply excited about the journey every year. I feel the kind of anticipation and nervousness that a small child feels on Christmas Eve waiting for Santa's arrival. My tummy does flip flops and feels like it jumped right up into my throat. My heart pounds fast enough to flutter my shirt-front. I have to abstain from coffee all week for fear of serious over-stimulation. I think about and dream about little else.

This one event has given me more hope than any scan result.

On the 3-Day for the Cure you are transported. Transported to a world where the cure is already a reality: a world without death, a world with only hope and love. You are transported from a place of helplessness to a place full of power. From a place of illness to a place of immense strength. From a place of disappointment, to a place of success. Surrounded by the sound of thousands of determined feet, you can't help but feel carried. When you cry, and you will cry, there are thousands of shoulders available for comfort.

Everyone has a story, one is sadder than the next, and you are no longer alone. I also think the sheer length of the walk, three days and 60 miles, makes every interaction more poignant. Like a summer love where two days can feel like two years, friendships formed along the 3-Day for the Cure feel like lifelong bonds after only a few minutes.

And the finish line!

Thousands of women and men line up shoulder to shoulder in their matching victory shirts and form a tunnel through which you are literally carried. When you cross the finish line, bandaged and broken. When you hobble across the finish and think, surely, I can not move another step. Instead of collapsing, you are greeted by thousands of high fives, deafening cheers, and are rained on by your fellow walker's tears of joy and sorrow. You are lifted up. Your limp is transformed into a confident stride. By being part of something bigger, you feel as though you could easily walk another 60.

If so many people can feel so strongly, can unite and create something so beautiful, no matter how dark the diagnosis, we must win. We will win. Alone, we can do nothing, but together, we can do anything.

The Susan G. Komen 3-Day for the Cure weekend is one of the only times I have ever cried during my journey. I clearly remember the times I have cried outside of the 3-Day. Given my personality, they have been few and far between. I am not overly optimistic or fighting to keep from crying, I simply put my head down and continue to live.

I think this cancer diagnosis is so scary and so overwhelming, that my mind goes numb. My mind only allows me to see one step ahead, one day ahead, one small goal ahead. My mind prevents me from comprehending the full enormity of my situation. But on the 3-Day for the Cure, my mind is confronted by "shock and awe" and for a few precious days I let down my guard. I stop fighting and allow myself to be carried.

Big Man, mom and I will be walking 60 miles this weekend. This is Big Man's first. I get emotional just thinking about him there. I got him a t-shirt: "I wear pink for my wife." I have bought myself some sparkly pink Big Girl pants. We are ready!

I know I sound crazy, but I am looking forward to Opening Ceremonies and walking onto that route hand-in-hand with Alex just as much as I looked forward to seeing him at the end of the aisle on our wedding day.

Many of you non-walkers or non-crew probably think I am insane, but let me try one last time to explain. When you face death, you take stock of your life. You say, "What have I accomplished?"

This is my accomplishment. The $2,500 I have raised this year, the $8,000 I have raised over the past several years, the thousands of miles I have walked are my "last words." On my 3-Day, I am standing up and saying, "I was here. Today, I made a difference. Because of today, I am leaving this world better than I found it." The 3-Day for the Cure is my legacy.

If you live in the VA, MD, or DC area, come out and cheer on the Big Man and me this weekend! Visit one of the Cheering Stations or Closing Ceremonies listed here. If you live far away, register for your own 3-Day for the Cure or make a donation to our team, the Million Dollar Babies!

At the very least, get out there and buy some pink toilet paper, pink razor blades, pink Payless slippers, or a pink plane ticket!

But please, while you may start there, don't you dare stop there.

I thank you.

Inspiration

Ok Everyone,

As if scan time wasn't inspiration enough for me, I just received word of a 28 year old beautiful young spirit who was diagnosed with Stage 4 breast cancer. Allison is getting married on May 8th.

What is going on with this world????

I know my scans will be good. Let's send all the good vibes we have gotten from dancing and loving life Allison's way. http://www.facebook.com/group.php?gid=401096972787&ref=nf

Also, if you have not yet gotten involved in the fight against breast cancer, either with a Susan G. Komen Race for the Cure, a 3-Day for the Cure,  or as my younger cousin at Dennison University did a "Bench Press for the Cure", get involved now. To do so, visit www.Komen.org. It can be as big or as little as you would like but this is an issue that affects us all. We all have mothers. We all have grandmothers. We all have aunts. We all have sisters. We all have daughters. Enough is enough now.