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.

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.

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.

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.

Me in my wig the night after Big Man shaved my hair.
That's one good-looking wig & he's one good-looking hubby!
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.

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?