Fight of a Lifetime

I would like the Honourable George Smitherman, the Minister of Health and Long-Term Care for Ontario, to answer a few questions which are critical to cancer patients in this province.

Why Mr. Smitherman, does Ontario rank 9th out of 10 provinces in providing cancer patients access to new intravenous cancer drugs that can prolong and/or save their lives?

Why Mr. Smitherman, when Ontario is second in the country in the number of scanning facilities, is it at the absolute bottom of the list for number of funded medical diagnostic imaging scans?

Why Mr. Smitherman, does Ontario fund 4, from a list of 24 newer cancer drugs, when B.C. fully funds 20 of those drugs? (Other than those 4 drugs, Ontario provides ten other cancer drugs, only if the patient satisfies 31 different restrictions on eligibility or pays for the drug.)
 
Why Mr. Smitherman, does Ontario, with 5 medical diagnostic imaging facilities, only fund 6 scans per hundred thousand people, when Quebec, with 7 medical diagnostic imaging facilities, funds 209 scans per hundred thousand people?

Why Mr. Smitherman, does an Ontario cancer patient have restricted access to PET Scans, a critically important medical tool and the standard for cancer patients in the USA, when Quebec cancer patients have a higher level of access to the scans?

Why Mr. Smitherman, does an Ontario cancer patient have restricted access to newer life-saving drug therapies, when a B.C. cancer patient has a much higher level of access to the same drugs?

Why Mr. Smitherman?


Facts and statistics from:
Report Card on Cancer in Canada 2006
Cancer Advocacy Coalition of Canada Cancer Statistics 2007
Canadian Cancer Society

Ray died peacefully at home on January 7th, 2007 with his wife and best friend Terri, and his faithful dog Tucker by his side. Greatly loved and greatly missed by his step-daughter Jaime Lynn and husband Scott, his step-son Christopher and girlfriend Laura, his parents Jerry and Kay Buckley, and his half-sister Kristine Gratton.

Ray was the proud Papa of three precious grandchildren, Caitlynd, Joshua and Lacy. He will be especially missed by Caitlynd, who named him Papa and wrapped his heart around her heart forever.

Beloved son-in-law of Doug and Joan McPherson. Brother-in-law of Wendy McPherson, Vicki and David Stokes, Brent and Kori McPherson. Uncle to Aaron, Cori, Micheal, Megan, Nicki, Jeremy and Laura. Nephew of Rosemond Mullins, Al & Jeri Casetti, Barney & June Casetti, Pete & Audrey Casetti, and Rose Garlow. Ray will also be sadly missed by the many cousins he dearly loved.

The absence of Ray's laughter, his beautiful smile, his wonderful hugs and his quick wit, will leave a void of deep sadness in the countless lives of those who loved him. One day however, that sorrow will turn into joyful memories they will always carry in their hearts.

Ray was a member of Fox Glen Golf Club. His passion for golf could not be dampened by cancer. He played the best golf of his life last summer, scoring his personal best and winning the most tournaments he's ever won in a single season. Over the course of his illness, the management, staff and members of Fox Glen Golf Club truly became a second family to him.

Ray was adopted into the hearts of a new family last year, the compassionate and absolutely fabulous staff at the Windsor Regional Cancer Centre. Dr. Sindu Kanjeekal, who Ray fondly called 'doc', went above and beyond the call of duty until the very end.

Ray died exactly the way he prayed he would die. God answered Ray's prayer in full - and then some. He passed away at home, in his recliner, in his sleep, and more than appropriately, on football Sunday.

In expression of sympathy, memorial donations can be made to the Windsor and Essex Cancer Centre Foundation.

Ray's Funeral was held on Thursday January 11th, 2007 at Heritage Park Alliance Church in Windsor, Ontario. Officiated by Pastor Garth Leno. Family and friends gathered after the funeral at Fox Glen Golf Club.

You can leave a message for Terri and her family in Ray's online Condolence Book

 

A lot changes in a very short amount of time with stage IV Colon Cancer. In September, we were excited that Ray was able to start taking the cancer fighting drug Avastin (bevacizumab) and a little apprehensive about the change in his chemotherapy from FOLFIRI (5-FU and leucovorin with irinotecan) to FOLFOX (5-FU and leucovorin with oxaliplatin). The reason for our apprehension was the nerve damage caused by Oxaliplatin. For Ray, the Oxaliplatin caused a "pins and needles" feeling in his fingers when he touched something cold, and in his mouth and throat when he drank something cold. The sensitivity lasted for three or four days after his chemotherapy infusion. Thankfully, it was more of an annoyance than anything else. Fatigue caused by the Oxaliplatin was a bigger factor. It became greater and lasted longer with each treatment.

On December 15th Ray woke up in excruciating pain. I rushed him to the Windsor Regional Cancer Centre . His oncologist Dr. Kanjeekal did an immediate ultrasound followed by a CT Scan. The results revealed that Ray's cancer had grown. The chemo/Avastin treatments were not working. It was a devastating blow to both of us. Ray was given a morphine patch plus Dilaudid pills to manage the pain. Dr. Kanjeekal made the decision to switch Ray's chemo from FOLFOX to Xeloda (capecitabine) - an oral chemotherapy drug taken for 14 days then a 7 day break - and continue with Avastin. She also made an appointment for Ray at the Princess Margaret Hospital in Toronto on January 15th to see if he is eligible for any clinical trials they're running. The fact that Dr. Kanjeekal did not take away all our hope that day and did not give up on Ray that day, truly saved us from complete emotional destruction that day.

The last two weeks have been Ray's toughest battle to date, and each day the battle gets tougher. He had to have the strength of his pain medication doubled and he's had a dramatic loss of weight. I understand now, why some people give up the fight. Ray has been at that point a couple of times, but each time I've watched him pick himself up emotionally and keep on fighting. He absolutely amazes me.

We don't know what will happen from day to day now. We do know, however, that our love for one another is greater than we ever dreamed possible, and that each and every moment we have together is worth more than any amount of money could buy.

Terri McPherson Buckley

terri@wisehearts.com

 

 

Ray and I have tried not to let cancer be the main focus of our life. It was fairly easy to do during the summer when he had few side effects from his chemotherapy treatments. He was feeling strong and energetic and except for the two days every two weeks that he was hooked up to the 5FU pump, cancer lived in the background of our life. Now that he is on a more aggressive regimen of FOLFOX and Avastin, cancer is very much in the present and always at hand.

 

The Oxaliplatin chemo, one of the chemo drugs in his FOLFOX combo, causes neuropathy – nerve damage. It shows up as a ‘pins & needles’ feeling in his fingers when he touches something cold, and in his lips, mouth and throat when he drinks something cold. In the beginning, the neuropathy went away a few days after his treatment. Ray had is fourth FOLFOX/Avastin treatment last week and the neuropathy is still present today. It lasts a little longer each time he receives a treatment.

 

Avastin side effects have been fairly mild. He’s had a couple of nosebleeds and one week he had flu-like symptoms for a few days. This was a little scary because his temperature dropped down to 93 degrees F. I never saw a body temperature that low before. I actually thought the thermometer was broken and bought a new one. When the new thermometer gave the same reading, I called the cancer clinic. An oncology nurse called me back said it sounded like he picked up a flu bug. I was told to give him some Tylenol and keep an eye on his temperature. After he took the Tylenol, Ray fell asleep for a few hours. When he woke up he was running a fever of 100 degrees F. I was told to bring him to the hospital if it went over 101 F. It never did. A short time later his temperature spiked, he broke out in a sweat, then he started shivering with chills. He slept for another hour or so, then felt better until the next day when the process repeated over again. Since that time, I have come across people who took, or are taking, Avastin and had the exact same reaction.

 

I have found that you cannot rely on the cancer clinic and medical staff alone for answers. Other patients and caregivers are an invaluable resource. There are always others who are walking a little further ahead on the road you’re traveling. Their knowledge, suggestions, little tricks for easing chemo side effects, or just their understanding, becomes part of the safety net that keeps you from feeling like you’re falling off the edge of the world.

 

Terri McPherson Buckley

terri@wisehearts.com

 

Now that Ray and I are 5 months into his battle against Stage IV Colon Cancer, my heart breaks each time I hear from someone who just received the same diagnosis, or has a loved one who just received the same diagnosis. They are desperate for information, wanting to know who to turn to, and where to look, and wanting to know what all these new words really mean.

Being thrust into the world of colon cancer feels like someone plucked you out of your life and dropped you into a land where everyone speaks a foreign language. Even the most caring and considerate oncologist cannot give you all the information you want and need, along with detailed explanations, at your first appointment. 

Explaining Stage IV Colon Cancer is relatively easy. You understand, when the doctor tells you there is a primary tumor, one tumor that started the whole ordeal and that it is located in the colon. You hear the dreaded word 'metastatic' and understand it means cancer that has spread to distant organs. (Ray cannot stand to have that word used in his presence. It was the first 'cancer word' he had to learn.) You understand, most of us for the first time, that the cancer in the liver, the lymph nodes, and/or wherever else it has spread, is all colon cancer.

Hearing the prognosis is another matter altogether. Suddenly, the life you had planned to live, your future, your hopes and dreams, are gone. You are left with a very short window in which to live out your life. By the time the doctor gets to the treatment part, your brain is already on information overload and your heart is about to burst from the pain of it all.

Even the simplest of terms send questions screaming through your brain. Chemo? What exactly IS chemo? There are different kinds of chemo? We have chemo options? What are our options?

The first time Ray's oncologist wrote down the different chemo treatment options, she went through each one, telling us the names of the drugs and how they were administered - some in IV form, some in pill form, some with a combination of both. We had never heard the names of the drugs before. How could Ray choose an option when neither of us had any idea, what any of the options meant? Ray asked her, "If you were in my position, which option would you choose for yourself". That was how he chose his course of treatment.

I spent the better part of each day researching colon cancer, researching treatment options, and trying to put it into terms I could understand, and in turn, explain to Ray and to our family and friends. Now, we're proactive. We ask informed questions and make informed decisions.

Getting to this point however, has been a fear-filled and arduous journey. We're still fearful of the road ahead. To date, there is no cure for Stage IV Colon Cancer. But there is a ton of research money in this field and the longer Ray is alive, there is a chance that a cure, or a life-extending drug will come down the pipeline.

Until then, we will remain diligent and up to date on everything related to Stage IV Colon Cancer.

Terri McPherson Buckley

Email:  terri@wisehearts.com

At the age of 40, my husband Ray asked our family doctor to book him in for a colonoscopy. He'd watched a special on colon cancer and wanted to have the test, basically, for peace of mind. He was told that screening doesn't begin until the age of 50, unless there is a history of colon cancer in your family or if you have a history of polyps in the colon. Neither applied to Ray. Today, at the age of 45, Ray has Stage IV Colon Cancer. Ray's story is chronicled at: www.raybuckley.com

This Blog was created to share our experiences and provide information, support and encouragement for others who find themselves in the unfamiliar and very scary world of cancer. Initially, I am going to address the frustration that we, and all Ontario families who need access to new cancer fighting drugs are facing. Time is not a luxury for families in cancer crisis. As this Blog evolves, I hope it will be a source of light for those who are walking in the dark wilderness of colon cancer. Where you are now, we once were.     

After the initial shock wore off, we had to do an incredible amount of research to understand what a diagnosis of colon cancer meant, to understand the options presented to us, and to find out what resources were available. Battling cancer is more than battling a disease.

The Ontario Health Care system does not provide equal coverage for everyone. Those who can afford it, have access to a new cancer fighting drug - Avastin. It was specifically approved by Health Canada for the treatment of first-line advanced colorectal cancer. The majority of people can't afford the drug. In Ontario, the cost of Avastin is $2,200.00 every two weeks. The Windsor Regional Cancer Clinic applied for a break on the price of the drug for my husband through a new Avastin Assistance Program. They applied for one other person before my husband and that person received a $600.00 price reduction per treatment from Hoffman La-Roche, the distributor of Avastin. We are waiting to hear if Ray will get also get a price break.

Currently, Ontario doctors have recommended Avastin to 3,000 of their patients. The drug is taken in conjunction with standard chemotherapy for colon cancer. (FOLFIRI in my husband's case.)  Avastin, when it works, stops the progression of cancer 71% longer than chemotherapy alone. Ontario's Minister of Health and Long-Term Care, George Smitherman, says it is not a cure and it is too expensive for coverage by Ontario's Health Insurance Plan. If you don't dig very deeply, you may think he has a valid point. The truth, however, is just below the surface of his words.

Ontario's Ministry of Health does some mathematical hyperbole to defend their decision. They say that covering 3,000 people for Avastin would add 120 million dollars to the provincial health costs. Barry Stein, president of the Colorectal Cancer Association of Canada, takes issue with the province's model for evaluating these treatments. In an interview with the Ottawa Sun on March 26th of this year, Stein said, "While treatments average $2,000 each and must be given every two weeks, these people have advanced diseases. So while 100 people may qualify in the beginning, that's not how many will be on the treatment. For some it won't work and they'll end it early. Others will die. There are others for whom the treatment works quite well. With the treatment and tumour shrinkage, surgery is able to go ahead. " My husband Ray falls into the last category. You can imagine our frustration.

Some very interesting information is coming to light as I research the Health Care System here in Canada. Avastin is not currently covered under the Veterans Affairs Canada Health Plan. The provinces of British Columbia and Newfoundland cover it through their provincial health insurance plan. Quebec has coverage if an oncologist requests the drug for a patient - they have found a workaround to get their patients covered for Avastin.

Interestingly enough, I found that the Public Service Health Care Plan added Avastin to its coverage. Which means, if you are a member of parliament or work for a government agency or corporation, if you are a federal judge or work for the RCMP, you can get Avastin and do not have to pay for it.

Hmmm.... the Canadian government doesn't approve the coverage of Avastin for its Veterans, the Ontario government doesn't approve the coverage of Avastin for its citizens, yet, the people making the decisions about who will not be covered, are they themselves covered for the drug. I wonder if they would decide differently if their own coverage had to be the exact same coverage they dictate to others?

The Ontario Government collected 2.5 Billion dollars last year through its new Health Care Tax. Where did all that new-found money go?