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.

Should cancer care focused on quality of life wait until all treatment ends?  Or can it be integrated with medical treatment as soon as someone is diagnosed with a life-threatening illness?

In a study of 150 advanced lung cancer patients, starting palliative care along with standard life-prolonging treatment when patients were first diagnosed not only improved their mood and quality of life, it actually increased the time they lived.

Although patients who received early palliative care received less aggressive treatment at the end of life, they lived almost 3 months longer than patients who didn’t have such early support.

Study Plan

Newly diagnosed lung cancer patients at Massachusetts General Hospital were invited to participate in a randomized clinical trial where they either  received standard medical treatment for their cancer or had early palliative care along with that treatment.

Ten patients (14 percent) in the standard treatment arm who asked for it were able to receive care from the palliative team, but were not switched to the palliative arm of the trial.

Researchers measured quality of life, mood, and survival time in both groups.  They also looked at aggressive care at the end of life and whether patient’s preferences for resuscitation were recorded in the outpatient electronic medical record.

Palliative care was provided by a team of specialists who followed the guidelines of the National Consensus Project for Quality Palliative Care. Such teams are becoming more common in hospitals and some outpatient settings in the United States and are not limited to hospice programs.  More than 80 percent of large hospitals have them.

Multidisciplinary, they include professionals in the fields of medicine, nursing, social work, chaplaincy, counseling, nutrition, and rehabilitation.

The team paid special attention to:

• assessing physical and psychosocial symptoms
• establishing goals for care
• assisting with decision making regarding treatment
• coordinating care on the basis of the individual needs of the patient

Study Results

Quality of Life

• Compared to patients who received only standard cancer care, those who got early palliative care had scores for quality-of-life improve from the initial test to the one 12 weeks later.  Scores for the standard care group went down.
• The percentage of patients with depression was higher in the standard care group, although about 18 percent of patients in both groups got antidepressant medicines.
• Increased anxiety was about the same for both groups.

End-of-Life Care

When end-of-life care was analyzed, 105 (70 percent) of patients in the study had died.  For that group:

• 28 percent of standard care group had their wishes for resuscitation recorded in their charts, compared to 53 percent of those in early palliative care.
• Those in standard care spent a median of 4 days with hospice care, compared to 11 days for the early palliative care group.
• More than half (54 percent) of the standard group had some kind of aggressive care at the end of life, compared to a third (33 percent) of those who received care from the palliative team.

Aggressive care at the end of life was measured by any one of the following criteria:

• Chemotherapy within 14 days of death
• No hospice care
• Admission to hospice 3 days or less before death

Despite less aggressive care at the end of their lives, the early palliative care group lived a median of 11.6 months after their diagnosis, compared to 8.9 months for those who got standard lung cancer care.

Jennifer S. Temel, MD, and her team concluded,

Among patients with metastatic non–small-cell lung cancer, early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.

In an accompanying editorial, Amy S. Kelley, MD, MSHS., and Diane E. Meier, MD discuss the study in light of common beliefs that palliative care is only provided as an alternative to life-prolonging or curative care — “what we do when there is nothing more that we can do.”  They write,

This study is an example of research that shifts a long-held paradigm that has limited access to palliative care to patients who were predictably and clearly dying. The new approach recognizes that life threatening illness, whether it can be cured or controlled, carries with it significant burdens of suffering for patients and their families and that this suffering can be effectively addressed by modern palliative care teams.

The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines define palliative care this way:

Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.

Far from being focused on dying, the Guidelines continue,

Palliative care affirms life by supporting the patient and family’s goals for the future, including their hopes for cure or life-prolongation, as well as their hopes for peace and dignity throughout the course of illness, the dying process, and death.

Healthcare reform legislation, the Affordable Care Act, will establish 15 pilot sites that offer palliative care integrated with treatment paid for by Medicare for people on Medicare. The new law also allows children who are enrolled in Medicaid or the Children’s Health Insurance Program (CHIP) to receive both hospice and curative care.

Some insurance programs will also cover hospice care and treatment at the same time, so ask your insurance plan about hospice coverage even if you want to continue therapy.

SOURCES: Temel et al., New England Journal of Medicine,Volume 363, Number 8, August 19, 2010.

Kelley and Meier, New England Journal of Medicine Editorial, Volume 363, Number 8, August 19,2010

What Does This Mean for Patients?

It is important to realize that this study was done with lung cancer patients, not those with colon or rectal cancer.  Only 150 patients at a single outpatient program were involved in the research.

It was completed in an outpatient program at a large Boston research hospital with access to a palliative care team.  Many outpatient settings might not have a similar team available.

While Medicare and insurance pay for palliative care in hospice programs, reimbursement is not as easily available when palliative care is integrated with chemotherapy or other treatment whose goal is to cure cancer or prolong life.

However, for this group of lung cancer patients aggressive care at the end of life did not help them to live longer which might help patients and families with other advanced cancers make decisions about moving to supportive care only near the end of life.

Dying cancer patients had less fatigue and their physical symptoms improved when they had physical therapy three times a week.

Control group patients who were not included in the PT program had both physical symptoms and quality of life get worse, even over two weeks of observation.

Patients in the study were part of a hospice program in Poland.

The team from the Palliative Medicine Department at the Medical University of Gdańsk in Poland wrote,

Our analysis showed that, on average, after 3 weeks of kinesitherapy, a significant decrease of the intensity of fatigue was observed, while in the control group, it increased after 2 weeks of observation. The obtained results provide evidence that a planned set of exercises decreases cancer-related fatigue effectively.

SOURCE: Buss et al., Supportive Care in Cancer, Volume 18, Number 6, June 2010.

Massage from a trained massage therapist gave pain relief and raised moods for dying cancer patients immediately after each treatment.  However, the effects didn’t last over time.

Researchers compared the effects of simple touch to therapeutic massage for 380 patients in a hospice program.  Randomly, some patients received up to six 30-minutes massages over a three week period.  Other patients were simply touched briefly in ten different places on their body over three minutes. 

Both groups experienced pain relief right after the massage or simple touch treatment.  However, massage was more effective in relieving pain, reducing it about an average 2 points on a 10 point scale.  Touch reduced pain an average 1 point.

Mood improved for massage patients by about one and a half points, compared to one point for simple touch.

However, questionnaires showed no sustained improvement in quality of life or the distress patients felt from their symptoms over time.  Neither group used less pain medicine.

Jean S. Kutner M.D. and her team concluded,

Massage may have immediately beneficial effects on pain and mood among patients with advanced cancer. Given the lack of sustained effects and the observed improvements in both study groups, the potential benefits of attention and simple touch should also be considered in this patient population.

Some funding for the study was provided by the National Institutes of Health and National Center for Complementary and Alternative Medicine.

SOURCE: Kutner et al., Annals of Internal Medicine, Volume 149. Issue 6, September 16, 2008.

Planning for the end of your life is tough.  Whether you’ve just learned you have colorectal cancer or whether you’ve been fighting hard for years, you may not want to think about death.

You may feel that planning is “giving up.”  You may feel that you need to focus only on staying well.  Your family and loved ones may not be comfortable thinking or talking about it.

All of this is understandable.  At the same time, planning can be empowering. There truly are “angels” out there to help you — especially if you’re facing late stage or end-of-life issues. It is not an admission of weakness, loss of hope, or lack of faith in your ability to fight cancer.  It’s simply planning — and chances are you’ll be glad you did it.

• Planning helps you regain a sense of control over life’s rollercoaster — including the ups and downs of cancer. You’ll realize how much excellent help is available for all stages of life, including those at the life’s end.
• Sooner is better.  It’s easier to think and talk about issues when they’re more distant, rather than during a crisis. Getting things taken care of can give a sense of relief, and free up your energy for more immediate challenges.
• Hospitals now require clear directions about your personal wishes and who can make decisions for you when you are admitted to the hospital for any reason.

Like all of your journey with cancer, planning for what you want during treatment and as the end of your life approaches requires a team.  You’ll want to include

• Family members and friends.  Talking over your thoughts and wishes can help clarify your own ideas and let your loved ones know what you need and want. Remember, at least one trusted family member or friend needs to know where you keep legal, financial, and medical directive information.
• Your health care team. especially the doctor who coordinates all your various specialty caregivers.
• An attorney.  You may need help with your will, advance directive or other legal documents.
• A financial planner, if applicable.
• Social workers.  They can talk with both you and your family about your fears, concerns, and needs.
• Hospice staff.   You can talk to hospice about their services and requirements before being enrolling.  If you have several hospice organizations in your community, see if one fits your needs most effectively.
• Insurance professionals.  They can clarify what coverage you have for care and help with paperwork that may be needed after your death; and
• Spiritual support including your clergy.  Some cancer patients are strengthened by planning a funeral or burial place.  Once done, they are free to continue with cancer care.  Pastoral care is also included in hospice services.

Where Can You Go for More Information

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), has excellent resources for key aspects of palliative care including advance planning, assistance for caregivers, living with an advanced illness, and dealing with grief.

Cancer.net covers end-of life care on the patient information site of the American Society of Clinical Oncology including a podcast on palliative care that explains how palliative care supports people throughout life with cancer.

For a more comprehensive look at palliative care, both at the end of life and from the beginning of a life-threatening diagnosis, the National Consensus Project for Quality Palliative Care has published Clinical Practice Guidelines for Quality Palliative Care, available online for downloading.