[Our dear friend and advocate Pat Steer passed away on July 17, 2012. This was the last blog post she wrote for us.]
My friend Janet asked me last week if there were still things I wished I could do, any unfinished things on my bucket list. I thought for a minute before I said, “No.”
I’m sure Janet expected something like a wish to visit the Grand Canyon or take that cross-country sleeper train trip I’d always promised myself. What I really wanted to say, the first thing that came to mind: “I want to be strong enough to go upstairs and do a load of laundry.” Inconsequential as it seems, climbing the stairs to do laundry is where my head went when asked about my bucket list.
I never had a formal bucket list; instead, I created long-term goals. Despite all the goal-maker’s advice, mine were never written down, and were flexible, but I did get to most of them. I didn’t make yearly resolutions; I made training goals for my dogs. I set goals to pay off credit cards and become debt-free (and did it). I set a goal to pay off my condo in 10 years (and did it).
When I was in my late 30s, I put myself on course to retire at 55. I missed that one by a year – on purpose. Courtesy of a layoff, I was able to leave corporate life at the end of 2010, a month after I turned 55. So I guess I did retire, even though my official payout date was a year later at 56, when severance ended.
And eight years ago, when I started traveling to New York City for cancer consults and then treatments, I joined Amtrak rewards to earn travel points and make my many train trips pay off. I thought I’d save money on a few free tickets, but since Amtrak rewards don’t expire, I just let the points pile up until I had over 18,000.
In my head, I created the ideal train trip – east to west coast by sleeper train, taking my time to see parts of the U.S. and Canada that I’ve never visited. I would see relatives in the upper penninsula of Michigan, take in the Canadian rockies from a double-decker train car, enjoy a leisurely hop on/hop off trip down the Pacific coast, and then hang a left and cross the desert and Sierras to visit my uncle in Tuscon. I’d angle back up to see the Grand Canyon, and then cut back across the country through St. Louis and Chicago to come back home. I built a couple wish-list routes.
In 2011, I altered my dream train trip a bit, and plotted out a cross-country road trip from Syracuse to Colorado. The English Cocker Spaniel Club of America national specialty was in Denver in April. Self-employed, I had the time. Collecting good checks, I had the money. Driving a two-year-old Jeep, I had a car in great condition for the trip. I’d have to go by car because Amtrak still doesn’t allow dogs, but I could live with that modification. It was the perfect year to go.
Perfect – until my February checkup, when my NYC doc discovered an inoperable recurrence of my stage IV rectal cancer. This time, I had lung tumors and disturbing, painful tumors in my lower spine. My local onc confirmed the bone mets in my spine and additional mets in my hipbones. I was put on a custom weekly chemo regimen with pain control as job #1. No more six week cross-country road trip – I needed the weekly treatments.
“Chemo,” I cursed, “can really mess up a summer vacation.” But realizing that there would always be tomorrow, I gave up the national specialty trip and pushed through chemo from April through November. I felt better, too – not better enough to drive to Colorado, but good enough to travel to NYC three times for more treatments, to continue writing, to go to lunch with my friends, and to earn my dog Madison’s Rally Excellent title. The tumors were shrinking. I could always use those Amtrak rewards another time. I hoped.
Throughout my treatment, I’ve always warned other patients to be prepared. Things can change very fast when you have stage IV colorectal cancer. And I was prepared – I thought – in the important ways like a health care proxy and a will and advanced care statement. I’d signed the papers to donate my body to a local hospital for research. I know that my brothers and sisters know what I want at the end of my life.
What I wasn’t prepared for was the speed of the timeline when it actually hit me.
On Nov. 20, 2011, I showed Madison at the Salt City dog show circuit, where she placed first three out of four days in Rally Excellent and earned her RE. I delivered Madi to the kennel after her class, went home and packed for a quick trip to NYC. I was supposed to have a one-day radio-frequency ablation procedure on two lung mets. Two weeks later, on Dec. 7, after a collapsed lung, sepsis, and chemo port removal, I came home – wobbly, weak, and needing another week of home-delivered IV antibiotics.
I never made it to my family’s various Christmas parties. My pain level, which had escalated in the hospital, was at several percocets a day by Jan. 6 when the first of two attempts at a new port was placed. I did six weeks of chemo, two with an open port incision. I drove myself to my chemo appointments, but cancelled most other outings. I felt like crap, although the pain was getting more controllable.
Then, the CT at my January 23 checkup in NYC showed that my right kidney – the only kidney I have that’s truly functional – was seriously compromised. The scan was so scary that my onc wanted to immediately admit me to Memorial Sloan Kettering (MSKCC) to have a kidney stent placed. I managed to get her to let me consult with my MSKCC urologist uptown, who reassured me that while I needed to watch it, the kidney issues could resolve on their own and I wasn’t in immediate danger. Instead of a hospital admission, I took the 3:45 train home to Syracuse, with a list of things to watch and report.
New port attempt #2 was February 21. After the second port was placed, I finally started feeling like my old self. I was finally able to walk every day, went back to having impromptu lunches with friends, and put the final details on my annual lobbying trip to Washington, D.C. with Fight Colorectal Cancer. On March 5, I flew to the capital, saw lots of old friends and made some new ones, conferenced and lobbied for three days. I started to feel sick the morning I flew home.
On March 15, I was too weak for my scheduled chemo treatment. My onc’s nurse practitioner and a consulting onc admitted me to the hospital with a potentially blocked kidney. March 16, a local urologist and nephrologist placed a nephrostomy tube to unblock it. March 22 I drove myself home, again very weak and mostly inactive, but absolutely desperate to be out of that hospital.
My chemo (Erbitux and 5FU) was really only controlling the pain from my bone mets, and keeping a light check on some of the lung tumors. On March 28, my local oncologist and I agreed that I was too weak and my working, but stented, right kidney at too much risk to try to continue chemo.
I was done.
I asked if it was time to consult with hospice, and both Kathy, the NP, and Jeff, my onc, agreed. Meantime, we decided that pain control was job #1 again – and I moved from active treatment to best supportive (palliative) care.
I have active disease in my lungs, spine and hips and in a soft tissue tumor external to my spine. And I was stopping treatment – with active disease.
Two weeks ago, I recognized I was too weak (and too medicated) to drive to a doctor’s appointment, and cancelled it. For the last three weeks, for all practical purposes I’ve been what most performance scores consider bedridden. I can get up to use the washroom, clean up. I can get myself something to eat if it doesn’t take too long to make it – I have a 15 minute limit before I need to lay down again. Sometimes if the pain is running high and the pain meds haven’t kicked in yet, I can’t make 15 minutes.
Looking back, it took less than a month – March 15 to April 6, when I cancelled that first doctor’s appointment – for me to morph from full-time functional adult who could drive herself around to full-time cancer patient who is mostly bedridden.
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 health and activity before I ran out of treatment options. My body quit on me before my brain has. I’m not strong enough to meet even the compassionate release criteria for the newest drug for colorectal cancer. My ECOG activity score is around a 4. My kidney function is too impaired. 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 sobering to realize that if I want to sort through my files, someone has to move the cabinet closer to my daybed because I can neither move it nor carry the loose files back and forth. It’s overwhelming to realize that if I want to open my daybed, I need help. 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.
Our guest blogger, Pat Steer is a stage IV rectal cancer patient who was diagnosed in 2004. She stopped active treatment on March 28, and is focused on living the time she has left as well as she can. You can read her blog Life Out Loud: Surviving Cancer and Living Life.