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.

Dr. Indran Krishnan and Georgia Governor Nathan Deal

Indran Krishnan, MD, FRCP (London), FRCP(C), FACP, FACG is fighting colorectal cancer on many fronts. As a gastroenterologist, he personally screens people every week. As an associate professor at Emory University, he trains the next generation of physicians. As an advocate, he serves on Fight Colorectal Cancer’s Board of Directors, and was a founding member of the Georgia Colon Cancer Coalition. In the first 4 months of 2012, Indran stepped up his efforts by:

• Meeting with Georgia Governor Nathan Deal and members of the Georgia legislature to introduce them to Fight Colorectal Cancer and spread the word about screening;
• Attending this year’s Call-on Congress, our annual advocacy training and lobby day;

• Participating in a CVS Caremark webinar to speak about colorectal cancer awareness and the role of pharmacists as advocates for early detection and prevention of colorectal cancer;
• Providing the keynote speech at a “Closing Out March, Colorectal Cancer Awareness Month” ceremony sponsored by Given Imaging; and
• Answering questions about screening via Talk About Health. We thought you might enjoy reading Indran’s responses:

1. At the time of colon cancer screening what questions should a patient ask a physician?
2. Would you share what colon cancer screening is and what it entails?
3. How is it determined if someone is at high risk for colon cancer?
4. If my primary care physician suspects colon cancer, what are the next steps?
5. Is there any link between IBS (irritable bowel syndrome) and colon cancer?
6. Are there any new promising treatments or medications for men with IBS (irritable bowel syndrome)?
7. How do you decide what colon cancer screening option should be used for a particular patient?
8. If polyps are found during a colonoscopy, should I be worried? What are the next steps?

Lesa Fontaine with Georgia Governor Nathan Deal

Since President Clinton issued the first Presidential Proclamation recognizing March as Colorectal Cancer Awareness Month over a decade ago, each year in March advocates request that their state and city officials issue proclamations acknowledging March as Colorectal Cancer Awareness Month.

This year was no different – except for the fact that we had more states and cities than ever proclaim March Colorectal Cancer Awareness Month and it was all thanks to Fight Colorectal Cancer advocates.

Seventeen states and four cities and counties issued proclamations – and each one was accomplished because at least one advocate stepped forward and took the lead.

We would like to take this opportunity to thank every person who pushed for a proclamation this year. They are:

2012 STATE PROCLAMATIONS 

• Alabama – Thanks to advocate Lisa Borden!
• Arizona – Thanks to advocates Liz Dennis!
• Georgia – Thanks to advocate Lesa Fontaine (pictured above)!
• Idaho – Thanks to advocate Frank Luzzo!
• Illinois - Thanks to advocate Jennifer Olson!
• Iowa – Thanks to advocate Jeanna Jones!
• Massachusetts - Thanks to advocates Amy Robert and Evelyn Reyes!
• Minnesota - Thanks to advocate Kathryn Finn-Blume!
• Missouri - Thanks to advocate Ginny Goddard!
• New Jersey - Thanks to advocate David Dubin!
• North Carolina – Thanks to advocate John Lloyd!
• Ohio – Thanks to advocate Rene Elefteriou! 
• Pennsylvania – Thanks to advocate Patti Hollenback!
• South Carolina - Thanks to advocate Jo-Ellen DeLuca!
• Texas - Thanks to advocate Brienne Fisher!
• Virginia - Thanks to advocate Cindy Robinson!
• West Virginia - Thanks to advocate Pam Seijo!

2012 CITY/COUNTY PROCLAMATIONS

• Cincinnati, Ohio – Thanks to advocate Ed Murphy!
• Davis, California – Thanks to advocates Barbara and Doug Wilson!
• DeKalb County, Georgia – Thanks to advocate Lesa Fontaine (seen here with the County Commissioners)
• Gadsden, Alabama – Thanks to advocate Lisa Borden!

If your state or city is not listed above, plan to make a request in mid-winter 2013!

For the past ten years, NIH budgets have been essentially flat.  Factoring in rising research costs, flat funding means a loss of nearly $6 billion dollars in purchasing power.

AACR is calling on its members and the advocacy community to work even harder with Congress to invest in medical research.  The AACR board of directors said,

Therefore, the AACR announced this morning that it plans to redouble its efforts to engage with Congress to make research funding a higher national priority, raise public awareness of the importance of continued investment in cancer research, and call on its 34,000 members and broader advocacy community constituencies to join together to help better explain and illustrate the value of cancer research and biomedical science to the economic health and well-being of this nation.

AACR President Judy E. Garber, MD, MPH said,

We already see the effects on our most precious resource, young investigators. This is potentially disastrous, as we are relying on them to ensure the continuing pipeline of new discoveries that will have ever greater impact on the welfare of patients and the public health.

AACR is holding its 2012 annual meeting in Chicago this week – Accelerating Science: Concept to Clinic.

We ring the bell to bring attention that colorectal cancer is the number two cancer killer in America. We need awareness that colorectal cancer can be prevented, treated, and beaten. We are issuing a call to action to increase funding for research, better access to colorectal screening, and the very best treatment for every American who is diagnosed with colon or rectal cancer.

On stage with Carlea was: Ben Basloe, Todd Jones, Josh Young, Rose Hausmann, Joanne Kimmel, Dana Rye, Katelyn Sherry and David Dubin.

We need you to continue to add your voice and urge your Representative to support H.R. 4120! Simply submit an Action Alert.

H.R. 4120, the Removing Barriers to Colorectal Cancer Screening Act of 2012, will fix a regulation that requires Medicare beneficiaries to pay coinsurance when their screening colonoscopy involves the removal of a polyp. The current policy can cost patients $100 to $300 and serve as a deterrent to screening.

We need cosponsors for this legislation if it is to pass into law & YOU can help!

Fight Colorectal Cancer advocates from around the country took the fight against the disease to Capitol Hill Wednesday to ask lawmakers for their support for legislation that will fund cancer research and screening programs.

Advocates held more than 85 meetings on Capitol Hill, capping two days of training sessions during Fight Colorectal Cancer’s 6th annual Call-on Congress Conference, held March 5 – 7. Sessions held by cancer experts, researchers and Fight Colorectal Cancer staff armed advocates with statistics, talking points and information about key legislation to combat colorectal cancer.  More than 60 advocates, who traveled from 22 states, participated in the conference and were encouraged to share their personal stories of battling the disease.

Liz Dennis, a survivor of stage III colorectal cancer, traveled to Washington, DC, from Arizona to share her personal story about colorectal cancer, and to ask her lawmakers to commit to funding for screening programs and research so that fewer people have the same experience. “I never want to go through that battle again,” she said. “And I have lost too many friends to this disease. I am here because I am determined to see a cure for colorectal cancer in my lifetime.”

Representative Charlie Dent

Fight Colorectal Cancer also spotlighted advocates who have advanced progress and stood on the front lines of the fight against the disease.

Surrounded by cancer patients, survivors and family members, Rep. Charlie Dent (PA-15) was recognized as Fight Colorectal Cancer’s 2012 Congressional Champion.  Fight Colorectal Cancer Board Chair Nancy Roach, President Carlea Bauman and Pennsylvania’s 15th district resident Mary Diacont presented Rep. Dent with the award. Mary lost her daughter to colorectal cancer when she was just 18 years old.

Rep. Dent has championed two key pieces of colorectal cancer legislation, including the Fight Colorectal Cancer Stamp Act (H.R. 893) and the Removing Barriers to Colorectal Cancer Screening Act of 2012 (H.R. 4120).

“Fight Colorectal Cancer is grateful to have an ally in Rep. Dent who recognizes that a strong public-private partnership is critical to combat this preventable disease, which kills 50,000 Americans every year,” said Fight Colorectal Cancer President Carlea Bauman.

Pam Seijo

Fight Colorectal Cancer also awarded cancer survivor Pam Seijo, of West Virginia, with the Volunteer Advocate Award to honor her commitment as a mentor and an advocate. Pam, an 11-year survivor, has attended every Call-on Congress since the inaugural event in 2007. She has also served as the chair of Fight Colorectal Cancer’s Grassroots Action Committee and has mentored countless patients and family members into becoming passionate advocates for the cause. She has been involved in colorectal cancer advocacy for so long that she and her elected officials are on a first-name basis.

Pat Steer

Pat Steer from central New York was awarded the Andrew Giusti Memorial Award. The award is given out annually in memory of Andy Giusti, a former Board member, scientist and colorectal cancer patient to honor advocates who work in the research environment “for activism on behalf of colorectal cancer patients and for focusing, like Andy did, on pushing for great science that will translate to patient benefit as quickly as possible.” Pat, a stage IV survivor, was a consumer reviewer for the Department of Defense’s Congressionally Directed Medical Research Program in 2011 (CDMRP). The CDMRP funds research for colorectal cancer, among other cancers.

Fight Colorectal Cancer’s annual Call-on Congress Conference brings together renowned cancer researchers, experts and federal agencies to discuss emerging research and treatment and the political landscape for colorectal cancer legislation.

As the conference ends, advocates said the training sessions and seminars have given them tools to return home, inspired and empowered to continue fighting colorectal cancer.

Erica and Ethan Lee of Sacramento, Calif., participate in Call-on Congress training sessions.

Training sessions with Fight Colorectal Cancer staff gave advocates a real world view of the policy and legislative landscape for colorectal cancer. They were given information about key legislation, statistics and talking points for their meetings with lawmakers that will occur on Wednesday.

“It’s so exciting to be here in Washington and on Capitol Hill to see how it all works,” said Erica Lee, an advocate from California who is attending the conference. “It’s easy to complain about ‘politicians in Washington, DC,’ but here I’m part of the solution.” Erica recently lost her mother, Diane, to colorectal cancer.

Advocates can also access a virtual toolbox of outreach strategies, via the Fight Colorectal Cancer website under the Policy and Advocacy tab. Anyone interested in proposed legislation that Fight Colorectal Cancer supports can also find information in the Action Center.

Speakers included Dr. Jon Chung, a postdoctoral fellow at the Johns Hopkins University School of Medicine in the Department of Radiation Oncology & Molecular Radiation Sciences. He is also Fight Colorectal Cancer’s 2011 Lisa Fund Research Grant recipient. Dr. Chung addressed the challenges young researchers have in getting their work funded as research budgets shrink, and the threat it poses to emerging research and drug development.

His remarks were followed by Dr. John Marshall, the clinical director of oncology at Georgetown University Hospital and a global leader in the research and development of drugs for colon cancer and other gastrointestinal cancers. In a difficult budget climate, Dr. Marshall addressed the challenges to sustain adequate levels of funding for cancer research programs.

At the end of their training, advocates received their Capitol Hill meeting schedules, and the groups that were assigned to attend meetings together rehearsed their talking points.

“I’m nervous, I’m excited. I can’t wait for tomorrow to get here. On the other hand, I’m glad I have some time to let all this information sink in,” said Erica. “It’s been a long day, but invigorating.”

Follow updates from Call-on Congress at FightColorectalCancer.org, Facebook, and Twitter (hashtag #ConC2012).

Representative Payne announced last month that he had been diagnosed with colon cancer but expected to make a full recovery. However, last week he took a sudden turn for the worse and was flown home to New Jersey where he was placed in hospice care at St. Barnabas Medical Center in Livingston. He was 77.

The first black member of Congress from New Jersey, Representative Payne served the 10th Congressional District for 23 years. He was planning to run for a twelfth term this year, vowing to run again only last month.

A strong champion for human rights in Africa, militants fired mortar shell at his plane as it left Mogadishu in 2009. He was the author of the Sudan Peace Act, which condemned genocide and helped bring famine relief to civilians starving in the Sudan.

He was also a tireless advocate for education, saying in 1991,

Education and training get you jobs. Jobs get you your housing, health care and other needs. It’s really the key to all the social problems of the district.

President Obama has ordered flags at the White House lowered to half staff. Governor Christie has ordered all flags in New Jersey lowered as well.

Fight Colorectal Cancer mourns the loss of Congressman Donald Payne and the nearly 140 Americans who will die of colon or rectal cancer today.

Washington, DC – Fight Colorectal Cancer hosts their 6th Annual Call-on Congress beginning today, in Washington, DC.

More than 60 advocates, including colorectal cancer survivors, caregivers, physicians and researchers, are gathering in the nation’s capital this week to hear from experts about current research and cancer control programs and to take part in advocacy activities on Capitol Hill.

“Our volunteers are activists who are bringing the fight against colorectal cancer to Washington to get more attention and more funding for this disease,” said Fight Colorectal Cancer President Carlea Bauman. “By speaking up and demanding change, they are making a difference in the fight against colorectal cancer.”

Advocates arrive in Washington today for the start of Call-on Congress

Tomorrow, advocates will receive training on how to have effective meetings with their legislators. On Wednesday, March 7th, the advocates will participate in more than 80 meetings in Congress to ask for support for the following pieces of legislation:

• Medicare Cost Sharing for Screening Colonoscopy.  This legislation will amend current law to waive coinsurance for colorectal cancer screening colonoscopy by correcting the coinsurance gap that exists under current Medicare policy.  Although colorectal cancer screening is covered by Medicare, beneficiaries may still be liable for coinsurance  if a polyp is detected and removed, because the screening can be reclassified as a diagnostic procedure.

Fight Colorectal Cancer asks Congress to support legislation that waives coinsurance for screening colonoscopy that also involves removal of polyps during the same encounter.

• Funding for the Centers for Disease Control and Prevention’s (CDC) Colorectal Cancer Control Program. Currently the program provides funding to 25 states and four tribal organizations for colorectal cancer screening targeted at low-income men and women, aged 50-64,who are uninsured or underinsured.  The CDC has set a goal in 2012 of screening 66 percent of adults aged 50-75 and a long-term screening goal of 88 percent by the year 2020.  Reaching these goals requires a commitment from Congress.

Fight Colorectal Cancer asks Congress to fund the Colorectal Cancer Control program at $70 million in the next fiscal year, which will allow the program to be expanded nationally. 

• Funding for Colorectal Cancer Research.  Advocates will ask members of Congress to demonstrate their commitment to colorectal cancer research by taking two important actions:

Support an increase in funding to the Department of Defense’s Peer Reviewed Cancer Research Program (PRCRP). Funding for the PRCRP was cut 29 percent  last year.

Fight Colorectal Cancer asks Congress to provide $16 million in FY 2013 for the PRCRP to restore funding to FY 2011 levels.

Support increased funding for the National Cancer Institute (NCI). The NCI is one of 27 institutes at the National Institutes of Health and leads a national effort to eliminate the suffering and death from cancer.

Fight Colorectal Cancer asks Congress to fund the NIH at $32.7 billion in FY2013, which will provide NCI with $5.36 billion in funding.

Follow updates from Call-on Congress at FightColorectalCancer.org, Facebook, and Twitter (hashtag #ConC2012).

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