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.