#HAWMC2013 Day 26, Advocacy, Bucket List, bucketlist, California, Cancer, ColoRectal Cancer, Conditions and Diseases, Elizabeth Whittington, Fight Colorectal Cancer, Gastrointestinal, Health, Pain Free Pass, Pat Steer, SLO Farmer's Markets, Tamoxifen, Tom Cruise, United States, vacation from cancer
A creature of habit, I count on certain rituals to know that all is well in my world. Breakfast, always the same, is a poached egg, toast, berries of some sort, an orange, and coffee from a favorite cup. When I wave goodbye to my love, in return he will blow a kiss, flash a peace sign, and watch from the window until I disappear from view. Predictably perfect. Let the day begin.
Phoenix is beautiful in April with hot days and cool nights. Already, I am thinking of vacation and our annual escape to another place, where one set of routines is temporarily traded for another. Long days, devoid of oppressive heat and work, with freeways abandoned by snowbirds for cooler climes, and air-conditioned cars and offices faking a chill. On the central California coast, the living is easier. Summer living happens without us even knowing what time it is. Days begin when we decide, with idle conversations over real food at Good Tides and a scan of the local newspaper for news about people we don’t even know. The only schedule of any import is that of the local Farmer’s Markets so my husband can make his annual pilgrimage to Atascadero for his favorite avocados. On a late afternoon, you will find me sprawled on a beach ostensibly reading a book I’ve been meaning to read since 1997, but in fact staring far beyond the words and out towards the horizon, delighted by the realization that the shimmer atop rocks the color of coal is rising from the glistening pelts of six seals basking in the sun at low tide.
Last summer was my first with cancer, thus qualifying it as some sort of milestone. Ensconced by a bay in a Bed and Breakfast the decor of which reminded us of a little house, indeed on a prairie, we fell asleep by the fire every evening and woke to a view of grey water that inspired the kinds of daydreams that made our summer-time pass too quickly. For the most part, cancer was absent. You couldn’t have paid me to think about it during that magical moment with those shimmering seals.
Still, there were reminders that I could always count on cancer to be there when I wasn’t looking for it. I panicked one evening, when I realized I had forgotten to refill the Tamoxifen before leaving home. No need. We found a CVS pharmacist who kept the wheels turning. I remember being a bit sad that the people who worked there would no longer think of me as just another nameless vacationer looking for sunscreen or the best place to buy fireworks, but as another bloody cancer patient whose most personal information was at their fingertips. I remember the kind young pharmacist who wondered if I had any questions about the medication. She could not have known how that my brain was and is still teeming with questions about the Tamoxifen and what I thought it was doing to me. But, I was on vacation. She knew it. Thus, with empathy and efficiency, she had the prescription filled in less than fifteen minutes. I wonder if it was because she understood, perhaps better than I, cancer does not take a vacation.
There is something I want to tell you on Day 26 of this month of writing challenges. Today, I am supposed to be writing about a day when I wish I could have used a pain-free pass. I simply cannot do it. I know no pain. I am here. I am happy. I am much loved. My natural habitat is in some realm realm between great joy and uncertainty but I am still here.
How I wish I could use a pain-free pass for someone I never knew.
Leaning back against a rock on Morro Bay Strand one day last summer, idly scrolling through favorite blogs and my Twitter feed, minimally distracted by short bursts of news about Tom Cruise’s diovrce or the unfolding events in Syria, I noticed from Elizabeth Whittington, this:“What a loss. Heartfelt condolences to u all @FightCRC: It is with great sadness we report Pat Steer passed away yesterday.”
On the sandy edges of California, I may as well have found a message in a bottle. I did not know Elizabeth Whittington, nor did I know Pat Steer or what was represented by the acronym CRC. That changed. By the time the amber evening rolled in, bringing with it a cool mist and throngs of people intent on capturing forever a beautiful sunset, I was deep in thought about Pat Steer. Retracing my steps through the day’s Tweets, I rediscovered Elizabeth Whittington’s condolences. On I ventured, to Pat’s blog where I found a woman who had been a dog trainer, a writer, and a cook who loved exploring in Syracuse always on a quest for culinary novelties. Pat had been diagnosed with Stage IV rectal cancer in 2004, and she had stopped active treatment on March 28 2012.
On May 7, 2012, she wrote a guest post No More Room in the Bucket for the Fight ColoRectal Cancer website. It was a poignant response to her friend, Janet, who wondered if there were perhaps some unfinished business, some loose ends, or bucket list items that Pat would like to fulfill. I imagine Janet was hoping for something grand, but Pat’s wish was for a pass of sorts, a pain-free pass that would grant her enough strength and mobility to go upstairs and do a load of laundry by herself. Strength and mobility.
Pat had no formal bucket list; she had long-term goals that were not written down but fulfilled nonetheless – paying off credit card debt and a mortgage, retiring from corporate life at 55, training her dogs, experiencing the vastness of North America by train. Following her diagnosis, I learned that she traveled to New York for consultations and treatments, and subsequently took advantage of the Amtrak points she earned. From coast to coast on sleeper train, she savored America and Canada, visiting relatives sprinkled in various states along the way. For Pat, it was leisurely travel, idyllic, and allowed her to build upon dreams of future destinations and how to get there.
In 2011, she was all set for another cross-country trip to Denver for the English Cocker Spaniel Club of America national specialty. Amtrak prohibits dogs, so Pat abandoned the idea of a train and decided to drive in her Jeep. Everything was coming together perfectly for a dream trip, until one of those New York city consultations revealed an inoperable recurrence of her stage IV rectal cancer. There were tumors in her lung and in her lower spine. Her oncologist confirmed metastatic cancer in her spine and hipbones. A weekly chemotherapy regimen abruptly ended those carefully thought out plans for a six week cross-country road trip. How Pat cursed chemo for ruining her summer vacation, but she found consolation in learning that the tumors were shrinking. Her strength was returning, so much so that she felt strong enough to travel to New York for treatments. Her routines of writing and lunches with friends were once again part of her life. And, she had all those Amtrak rewards to use later.
The ironies of cancer are beyond cruel. Throughout Pat’s treatment and in her advocacy work, she always cautioned other patients to be prepared for the speed at which things can change in Stage 1V colorectal cancer. With a living will and an advanced directive, Pat was “officially” prepared. Her family knew her wishes. But Pat was wholly unprepared for the rapidity of cancer’s final, painful assaults on her body. In No More Room in the Bucket she wrote that it took not even one month for her “to morph from full-time functional adult who could drive herself around to full-time cancer patient who is mostly bedridden.
I was done
Pain control became paramount, and in consultation with her team, she chose to stop treatment. She blogged about it at Life out Loud: Surviving Cancer Living Life where I discovered she had been held aloft, as I have, by virtual connections and the sheer kindness of online friends, including a woman she had never met who created a virtual tour of Seville, Spain for her, complete with well-wishes from Spanish waiters.
Summer is already in the air again in Phoenix, and I have begun to prepare mentally for a break away from the city and into the cool fog of California. Tonight, I am thinking of Pat Steer and her bucket list; Pat Steer who wanted so little.
As you consider the gift of just one day without pain, consider Pat Steer. I never knew her, but I will always remember her.
There is no more room in the bucket for big dreams like cross-country train trips. I feel a pang watching tv shows set in NYC, knowing that I’ll likely never visit my favorite city again. It aches to see puppies and kittens and know I’ll never own another one. I’ve never tasted foie gras, or truffles, or uni. I never got to visit the Food Network. I’ll never meet my friend Shawn in person or visit her in Seville, Spain.
And perhaps the hardest thing – I ran out of health and activity before I ran out of treatment options. My body quit on me before my brain has … In the greatest cancer race, hanging on until the next new thing becomes available, I didn’t quite make it to the finish line after eight years of trying.
Simple things are my goals now – and simple things are what I miss most. I miss spontaneous restaurant lunches with my friends. I miss being able to shop for fresh food every other day. I miss being strong enough to walk outside. I miss my dog, Madison, who I sent back to Virginia to be with her co-owner because I’m no longer healthy enough to care for her.
It’s frustrating to have to ask someone else to do laundry because I can’t safely climb the stairs to get it done. Knowing that I may never be independently mobile again – that’s what I miss the most in this phase of non-treatment. More strength and mobility – that’s what’s on my bucket list these days.
That and, well, I decided that at the very least, I could take care of a little desktop aquarium and a betta. Petsmart is delivering the aquarium, filter, gravel and betta food tomorrow. A friend has already agreed to pick out my new fish…and maybe my sister and brother-in-law will take the tank when the time comes. Until then, it’s a small goal that I can reach, one that will remind me every day of brightness, and color, and movement – even when I can’t always accomplish those things.”
Rest in Peace, Pat Steer