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.

20 comments:

Patty said...

Oh, Bridget, such wonderful news and a great blog post. I am so happy that the news is good and that you had a chance to have an amazing celebration in Europe. IMHO you should never feel small for fighting the fight you have, or having good results, or any of it. You are so aware of all of the good things that surround you and you don't take them for granted. You work hard for everything you have and have achieved. You fight every day and are an inspiration to all of us. You are also so involved in making a difference in this world and ridding it of breast cancer. Never underestimate or undervalue yourself...you may not be as tall as the Big Man, but your heart and spirit makes up for what you lack in stature. You are amazing. Congratulations!

Ronni said...

Dearest Bridget, you are never far away from my thoughts. I carry you around like the most amazing bouquet of flowers, full of color and beautiful perfumes. Did you know that in Judaism there is a saying "save a life, save the world"? There's lot of commentary about its origins but I subscribe to the thoughts that you never know what one person might be able to accomplish in life or who they might influence to accomplish great things. Every day you are alive is a gift to the rest of us. For anyone to measure the value of your life in dollars, misses the point completely. Do not let them intrude, THEY are the ones who are small. YOU are one of the wonders of the world and we cherish you. We will continue to fight this battle, in our own ways but very much together. Like beautiful flowers, you are the bloom and I'll continue to be the thorn. :-)

Lisa B said...

Hi Bridget - I have been following your blog for a while now - first heard about you from Meredith Cleasby at a "Get Started" meeting in Warwick, Rhode Island a couple of years ago. We have another one of those coming up this week (Thursday) - will you be there? Would love to meet you in person. Anyway - I have never commented here before but I just had to say how thrilled and happy I am for your good news!! I know it must be exhausting to have the extreme highs and lows of that roller coaster you are riding, but I would add that there is a whole little army of people out here who rise and fall with you and we are praying for you and thinking of you and sending our positive energies your way every day. You have touched more people than you know - never feel small!
Lisa Bourbonnais

Anonymous said...

Thanks for writing all that you do. Sharing this experience is beyond valuable. I had the pleasure of meeting you at the Boston 3 Day in 2011. I am a breast cancer survivor and was in the survivor circle carrying the flag labeled 'believe'. I, too, keep a blog as I write and mostly to maintain a journal of all the emotional and physical changes that cancer can cause to a body. My url is 'runningwithhair.blogspot.com'
Please read it if you have a chance! Be well and have fun with the big man! Love, Judy Jacoby

OurRedThread said...

Bridget you don't know me from a hold in the wall but I feel like I know you from your blog. A fellow 3-day'er posted your blog on FB and I have been following your journey and praying for you ever since. You are inspirational. I lost my best friend to breast cancer 4 years ago and the two of you have a similar fight, drive, and determination. You put positivity out into the world and at times when you need it - it comes back to feed you.

As for the dumb political crap going on right now (which drives me nuts by the way - you would think they would have something better to do than sling mud at each other - like actually help to fix and run the country?) but I digress :) You are worth every penny of your "1%" of health care costs or whatever that statistic might be. You are not a statistic - you are an amazing woman putting up a fight against a disease that I (and thousands of my closest 3-day and Avon friends) am dedicated and determined to erradicate. In that future - I will read a post on FB about a woman and her little dog running around in the snow or a great trip to europe with old German men, the Vienna Opera House and Sacre Torte - because she is a funny writer - not for her medical status. Thank you so much for your blog. I truly hope you get as much out of it as you put into it. Big hug Bridget and some head scratches to the pup too :)

Julie said...

You have no idea how happy I was to read this. You have been on my mind recently.

The Get Started attendees who are "your" meetings are so fortunate. You are an inspiration.

(I wish I was as eloquent as Ronni, but I echo her words.)

Anonymous said...

I am so happy to read this post. I had hoped your absence from your blog was because you were busy living life and I am so glad this was right. Do not let the politicians/their ill advised supporters make you feel small. They are small - not you.

Anonymous said...

Happy tears for the good news for you. Hugs, Carrie Cook

Liliana Holtzman said...

Happy, happy news! What a wonderful way to start the year.

I send you hugs and best wishes,
Liliana

Mandy said...

I'm so stinking happy for you, Bridget! This is wonderful news! Yet, I understand the feelings of being torn as another blogger I follow has recently taken a down turn. But your good news makes my hope for her bloom! Bless you!

Jay Furr said...

I'm so happy things are going well for you and that you had a great time in Europe. You're such an inspiration to us all and a great leader.

Anonymous said...

Oh my goodness. I was thrilled to read this post. Ive been checking and a little worried,but what a fabulous post! I spent my junior year in Vienna and have such fond fond memories of the holidays there....Im so pleased you picked it for your big trip with your husband.

Your continued good results and healing are the best news of all. Please don't let a meaningful bunch of statistics concern you. You're worth every penny.

Kristen in Roanoke

Mandi said...

I am so happy to hear that you had such an amazing trip and good news to go with it.

Anonymous said...

Enjoyed your post, Bridget. Please don't ever feel guilty about money spent on cancer patients. Let's not forget that we as a nation spent a trillion dollars on the war in Iraq and that country is as unstable as ever.
Also interesting to hear you are involved with SGK, who traditionally has kept a very low (nonexistent) profile when it comes to metastatic disease. Hope you can exert some influence on them to recognize the needs of us "non-survivors" and the need for research dollars going to the study of metastases.
Hope things continue to look up for you. Keep sharing!
A fellow stageIV patient

Bridget said...

Lisa, I will be in Warwick this week. Can't wait to see you!

To my anonymous stageIV breast cancer reader, I must, with all due respect, contradict you on this often quoted "fact" that Susan G. Komen does not support metastatic breast cancer patients. As someone who has been enrolled in Komen funded clinical trials in the past, that simply cannot be further from the truth!

To support my point, please take a look at this section of Komen's website which details their 2011 research grant projects. http://ww5.komen.org/2011researchgrants.html

I would like to specifically draw your attention to research grants:

4
18
21
29
33
37
41
56
62
64
69
74
75
and 81 all of which directly look into breast cancer metastasis and how to treat and PREVENT it.

Enjoy! This is the Komen funding I am proud of and excited about!

Stacy @bklynstacy said...

Such a beautiful post, so so beautiful. Thank you for writing it. I'm forwarding it to my mother-in-law, who's been Stage IV breast cancer (no history), Terminal, for two years, and she's still living a great, active, joyful life. (Her blog is called Dancing Through Cancer.) Wishing you all the time you can grab for yourself. There's no reason you shouldn't have it. {{{hugs}}}

Sam Jones said...

I have been following along & praying for you on your journey. SO happy for you! Enjoy every single minute of the good moments!

Jenn from WA said...

So happy to hear you had a fantastic holdiay season. You and big man deserve it and more. I think of you at every Getting Started Meeting I volunteer for here in Seattle. Your story of grace under fire and survival at all costs definitely hits home with so many would be 3 day participants.

Bob Williams said...

Bridget,

I didn't get to meet you at the Komen Leadership Conference this past weekend, but just want to thank you so very much for your thoughtful and inspiring comments.

Know that you are in our thoughts and prayers.

Bob Williams
Roanoke, VA

Bob Williams said...

Bridget,

I didn't get to meet you at the Komen Leadership Conference this past weekend, but just want to thank you so very much for your thoughtful and inspiring comments.

Know that you are in our thoughts and prayers.

Bob Williams
Roanoke, VA