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Sunday, August 17, 2008

My Cancer Survivor Story About to be Published

Blogger's Note: One of the items on my calendar for several months now has been participation with a Canadian group of cancer survivors who have collaborated on a book that tells their collective experiences with cancer.

My story is to be included in their book that is due to be released in a special book launching to take place on August 23rd as part of the Ottawa, ON, Canada, celebration of Dancing in the Street. Celebrate Life. Celebrate Survival. Here is my chapter of the book. Sometime in the next 30 days or so I will have copies of the book to share with family and friends.
Glendora, CA
Non-Hodgkin’s lymphoma

Living with any serious disease can be a test. If you or a loved one has been there, perhaps you can identify with my story. We all hear the mind-numbing statistics: one in four people will have some form of cancer in a lifetime; one in three families will see a loved one live, perhaps die with cancer. (Source: American Cancer Society)

Still, such data seems sterile and unlikely, until the day cancer hits home.

For me, cancer came home when I contracted one of the most aggressive forms of non-Hodgkin’s lymphoma (NHL) in March 2006. The day began like every other workday. Rising to shower and shave, I discovered a lump under my right arm, a growth about the size of a golf ball, also about as hard. What’s this? I finished showering and getting ready for work while contemplating: What now? This was only days before my wife Dee Dee and I planned to begin a Florida trip to visit family and attend my 40th high school reunion (the first I have attended since graduation). Because there was no pain from the site of the lump, I decided to wait until our trip was over to check the matter with my doctor (and my wife).

Upon returning to our California home a week later, another week passed before my doctor’s appointment. Still silent with my wife about the discovery, I returned home that Thursday evening, finally sharing that I had seen the doctor that day about a mystery growth under my arm. Astonished that I had been so stoic and silent about the matter, Dee Dee, quizzed me for answers I did not have and wouldn’t have for some time. I was glib. She was puzzled.

The next step was a scheduled appointment with a thoracic surgeon for a biopsy. By now, we were certain this was not just an infection because other growths had appeared. When the biopsy was completed and diagnosis confirmed, the cancer reality was ours to live: mantle cell lymphoma (MCL - aggressive blastoid type).

This is a chapter of our lives still being written over time. The book is incomplete. Initially, we had an HMO referral to an oncology group that just did not connect with us in the proper way. Our second referral was much better and that is where our treatment began in April 2006.

Originally, the oncologist scheduled eight sessions of chemotherapy. After six sessions, I was in remission. He advised me to call his office in six months to schedule an appointment to develop a maintenance plan. Unfortunately, ten weeks later the cancer returned. When we were referred at that time to another specialist (thanks to our point of service (POS) option in our HMO plan), we began a third cycle that started to employ some weekend inpatient treatment in addition to the continuing outpatient therapy. By then (and we knew this was likely to happen), referral came to a major national cancer treatment center in the area to start the therapy that would lead to the stem cell transplant. Because we never obtained lasting remission from some 16 different chemo treatments, our only viable option that offered hope of a cure for MCL was a stem cell transplant.

The unrelated donor stem cell transplant (MUD SCT) was completed on August 22, 2007. On the 44th day post transplant, results of a PET scan were negative (cancer gone!) and we also received the DNA test results -- the SCT was successful. My blood type, DNA, and immune system had been transformed to that of my 23-year-old anonymous donor somewhere in an overseas location. Presidential hopeful Barack Obama tells of weird and unexpected genetic connections in his heritage. My stem experience attests to the homogeny of the world’s gene pool. My own two brothers were not matches. A total stranger was.

Looking back over my two-year survivorship to date, I remember one day, when we arrived at the hospital outpatient clinic for a chemotherapy appointment, the registration line was particularly long (maybe 50 people). Falling in line behind me was a middle-age woman with her husband and from her first comment I overheard, I could tell that this was their first visit. She remarked: “Look at all these people; how sad!” I couldn’t help but respond to her: “This is not sad at all. All of these people have this place to come for care, treatment and a possible cure! What would they do without this hospital?”

Just prior to our stem cell transplant procedure and hospitalization, our physician and medical care team informed us that we had a 10%, possibly 20% chance of success with this treatment. This evaluation largely came from the fact that the lymphoma was so aggressive. Since the beginning of chemotherapy (April 2006), the longest period of remission had been ten weeks (after the first treatment). We found that most of the succeeding treatments would bring shorter-term remissions; some none at all. The greatest risk complication from the stem cell transplant procedure was graft versus host disease (GVHD) which can be fatal.

Meanwhile, until Nov. 30, 2007, I was restricted to home confinement for the first 100 days of recovery. Nearly 250 days post-transplant to date, recovery has been steady but slow with some skin rash (GVH), but on Feb. 25, 2008, I returned to work on a part-time basis. The partner and wife that I was so reluctant to share those first signs of the disease (because of some silly male trait that tries to foolishly protect loved ones from harm and bad news), has been my most constant support. She has tended to every possible need that I have had while still keeping her composure and outward strength. She was and is my best supporter and advocate. I know this has been a real struggle for her; often difficult. But she has persevered in an amazing way. Undaunted she is because of her faith and the confidence that we, together, witnessed in the care, knowledge, skills and service of our many care givers, our loving family, and a strong community of faith.

In the mind of every cancer survivor is the question: What if cancer returns? Knowing that life affords no guarantees, there is no element of surprise here, but possibly disappointment. We have survived one round; we know this is a marathon, not a sprint. We can survive others, although there is virtually no likelihood a second stem cell transplant would be done.

Research continues on the discovery of a lymphoma vaccine and perhaps that will be available in the near future. We have been asked about lessons learned during this cancer journey. The question prompts us to share: If possible, we would not, in the future, take a course that would have us see so many specialists on our way to the best care destination we could have found. To those who are fortunate enough to have employment-based health insurance: look seriously at the point of service option (POS), if available. This affords the most flexibility and peace of mind when care providers may need to be changed. For the rest of our life, we hope to stay in the care of the physicians and hospital where we had the stem cell transplant performed. This is one of the best, if not the best, cancer treatment facilities in the world: City of Hope in Duarte, California.

Today, I am an unabashed advocate for this life-saving facility; also for the imperative that we all should keep no secrets and live each day to share with family, loved ones and friends the best that faith and hope can offer. Building such values in others is a certain way to fortify same in ourselves. My cancer story has led me to adopt: “Consider what’s important, not just what’s urgent.” But then, of course, that is no improvement upon the classic Rotary consideration: First, is it the truth?
@ltaLINK to This SOURCE (web)
Consider What's Important,
Not Just What's Urgent

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