Here is the second essay by Ed Steger, the author of Living with Head and Neck Cancer

December 13 2010 – My Cancerversary

4 years ago today my doctor suggested palliative care as a treatment option. Well, I’m still here. Some days that surprises even me. I’m 3 years and 2 months with no evidence of disease (NED) and my current status as of last December moved from NED to “clinical remission.”

My sister sent me a book in early December titled, “The Emperor of All Maladies.” It is a biography of cancer written by a cancer physician and researcher at Columbia University. It was published last month and was named as one of the 10 best books of 2010 by the New York Times Book Review Magazine yesterday. This blog entry reflects on information covered in that book; it is not a book review, but more about what I took away from it.

The book crystallized a concern which has been nagging at me for some time. The concern is that I am not cured and never will be. Cancer is a series of cell aberrations; it is not just one aberrant cell event. That is why one might hear the term precancerous; it is a cell (or group of cells) which are heading toward becoming cancer, but haven’t fully matured. Some precancerous cells never mature, others do. Triggers for moving cells from one stage to another are becoming better understood due to genetic and genome research, but a single cell can lie dormant for decades just waiting for its trigger.

Recent studies support the hypothesis that some cancers are caused by cancer stem cells. By eliminating the body of all known active cancer cells via treatment and entering into a state of remission, cancer stem cells can still remain in one’s body. These unaffected and remaining cells can begin producing new aberrant cells leading to a relapse at any time. This insight, as well as others, is changing the way researchers view the “war on cancer” from one of curing it to one of treating it as a life long chronic illness. Although I am in remission, for me, this war is far from over and I relive it frequently.

The book also reinforced hope for the future by providing a much deeper understanding into the world of targeted cancer drug therapies. I’ve been on Tarceva, a targeted chemotherapy drug, for over 3 years. Two new, potentially more effective, targeted therapy drugs are in the pipeline: OncoVEXGM (about to launch a phase III trial) and REOLYSIN (currently in a phase III trial). Both of these drugs are for head and neck cancer (note, these specific drugs were not mentioned in the book, but I’ve been following their progress elsewhere).

Without complaining (why me), I’ve tried in this blog over the years to provide insight to the reader that explains why cancer is an atrocious disease and at times how cancer patients and survivors feel. There is an excerpt in the book which resonated with me that may help one not touched directly by this disease understand how patients experience cancer. It was written in an essay titled A View from the Front Line, by Maggie Jencks.

Maggie was diagnosed with breast cancer in 1988. She was treated with a lumpectomy and then a mastectomy. For several years she considered herself cured, but five years later she relapsed with metastatic breast cancer to her organs and bones. Aggressive chemotherapy failed and she died in 1995. Her analogy to cancer begins with her being awoken up mid-flight on a jumbo jet and thrown out with a parachute into a foreign landscape without a map. Here’s her essay…

“There you are, the future patient, quietly progressing with other passengers toward a distant destination when, astonishingly (why me?) a large hole opens in the floor next to you. People in white coats appear, help you into your parachute and – no time to think – out you go.

You descend. You hit the ground… But where is the enemy? What is the enemy? What is it up to? … No road. No compass. No map. No training. Is there something you should know and don’t?

The white coats are far far away, strapping others into their parachutes. Occasionally they wave but, even if you ask them, they don’t know the answers. They are up there in the Jumbo, involved with parachutes, not map-making.”

Although written over 15 years ago, the image, for me, still captures the desolation and desperation of many cancer patients. Oncology researchers, obsessed with radical and aggressive therapies, were devising newer parachutes, but with no systemic maps of the quagmire to guide patients and doctors. This is less true today than in the mid 1990s, but more progress is beneficial.

I realize this is a long blog entry, but I would be remiss in not sharing with you some further highlights from the book. Here they are in no particular order.

• The profession of oncology got its start based on the observation of the effects of mustard gas in WW I. This seems highly ironic.
• Ether, the first anesthetic, was not in use until the late 1800s. Mastectomies have been documented back to 500 B.C. I think back to all those poor women.
• If we don’t kill the tumor, we kill the patient. This short simple statement reflects why cancer doctors and researchers take such an aggressive treatment approach. You may have to read it a few times to get its full meaning.
• The pap smear was named after George Papanicolaous, a Greek cytologist at Cornell University. He began human trials in the late 1920s. It wasn’t until 30 years later that his earlier discovery began to become a mainstream cancer prevention procedure. For most of his career, he was ridiculed and ignored by his peers as discovering a useless procedure. The ironies in the book abound.
• The cancer genome project is in progress and is focused on mapping every cancer gene in every type of cancer. When complete it is estimated to be 10,000 times the size of the human genome project.
• We are winning the war on cancer; it just so happens to be a very long and complicated march.

I’ll stop my highlights here, but there were dozens of others such as the effect politics, fund raising, the tobacco industry, dedicated researchers / physicians, care providers, patients, other diseases (e.g., polio and HIV) and cancer advocates have shaped where we are today in the war on cancer.

I’d like to take this opportunity to thank my friends, family, physicians, and researchers for their continued support and effort.  It feels good to be celebrating my Cancerversary today.

~ and effort.  It feels good to be celebrating my Cancerversary today.

Cancer Essays by Dorothy Sauber is an interesting website I discovered two nights ago.  The header of the site describes her as a “writer – artist – teacher – mother – citizen”.  Her bio explains that  “She was a voracious reader and disciplined writer. When diagnosed with stage IV non-small cell lung cancer, Dorothy responded by creating a series of 16 essays that explored the many facets of living with a terminal disease. Within these writings one can find the essence of Dorothy’s rich life including her humor, family, philosophy, friends, and her endless generosity. After her death her sons and several friends organized, edited, designed and published Cancer Essays: Not the Book I Was Planning to Write.”

The reader has several options:  purchase a hardcore copy of the book; download individual essays; or, read each essay on the site.  I offer the following essay as an introduction and strongly suggest that you read the remainder.  A valuable contribution to personal literature on cancer.

I met the authors, Jay and Sue Shotel, earlier in the year at a Bone Marrow Transplant Survivor’s conference outside Boston.  They were attending in order to promote the book they wrote, It’s Good to now a Miracle:  Dani’s Story – One Family’s Struggle with Leukemia.  Dani is their adult daughter who was diagnosed with AML – acute myelogenous leukemia in 2002. The BMT survivor meeting was the perfect venue for showcasing this family memoir.

That audience – candidates for and survivors of peripheral blood stem cell and bone marrow transplant procedures, along with their respective families and caregivers – are the ones who will most benefit from reading this instructive and enlightening book.  If read with the proper perspective, the book may be among the most important reading for those blood cancer patients considering the transplant option.  Survivors and others will identify with the arduous and scary process.

The Shotels decided to keep a daily journal in order to keep track and be able to understand the new world of medical procedure that they were about to enter.  Most of the volume is told through the perspective of Sue, Dani’s mother.  Periodically Dani’s offers a patient’s counterpoint.  The diary-style conveys both strengths and weaknesses to the narrative.

From a purely literary standpoint, the repetitive descriptions of daily symptoms, like nausea and bowel movements, tend to bog down the pace of the narrative.  I mention this point perhaps only because I am an old English major.  But the Shotels were not writing for English majors. Their writing success was to recreate as faithfully as possible the family’s experience with leukemia and transplant.  The repetitive, grinding tedium of dealing with the dozens of symptoms and side effects of the process is thus meaningful as the process of marrow transplant and recovery/rebirth is a long and often tiring one.

The details are all there.  The strength of this is the learning opportunity it allows readers.  The educational aspect is given great advantage here by adding boxed explanations of new terms as they occur in the storyline – a type of blood test, a new drug, a medical definition.  And all of these are collated at the end in a glossary.

The proper perspective for the reader involves what to do with these details.  This is a singular story of a person of a certain age with a particular disease who elects for transplant at one of the more famous transplant centers in the United States.  Therefore, readers should avoid comparing their own experience, whether in the past or in the future, detail for detail, with Dani’s.  There will be different drugs, different catheters, different protocols, different resources, medical and social, available for any given patient.  I plan to write a post on factors to consider when making a transplant or other cancer-related decision.

Dani’s Story brilliantly conveys a truthful sense of the transplant experience.  It will be important reading for anyone considering or planning a peripheral blood stem cell or bone marrow transplant. Another group that will find this a useful read is the community of young adult cancer survivors.  The utility of the book is also fortified by a number of appendices devoted to fundraising, bone marrow drives for new donors, running a website, medical and disability insurance, the appeals process, as well as a list of supportive organizations.

Order direct from Amazon through Being Cancer Network link below:
It’s Good to Know a Miracle: Dani’s Story: One Family’s Struggle with Leukemia

Sophie's 5!

I have received a number of books recently that I hope to review in the coming months.  Since we have added so many new blogs since last year and have new readers, I am considering another shot at our Cancer Book Club.  I know people were participating but it was hard to determine how many and how consistently readers checked in.  Comments were consistent but few in number.  We did have good participation from most of the authors, even the actor Evan Handler.

I may try to think of different formats.  Last year we did a book a month, dividing it into four sections with a discussion each Monday.  I may try just one monthly discussion.  I might also investigate a forum mechanism.  Another idea would be a follow-up interview with the writer based on my questions as well as questions from Being Cancer Network readers.  I will be re-posting the Book Club page under the “Community” heading.  Take a look and let me know what everyone thinks.

In the meantime, these are some of the titles that have arrived in my mailbox:

~ Home Before Dark: a family portrait of cancer and healing by David, Kate, Michael and Sam Treadway.  This is a story of a psychologist and his physician wife, and how they and their adult children deal with his diagnosis of non-Hodgkin’s lymphoma.

~ From Incurable to Incredible: cancer survivors who beat the odds by blogger Tami Boehmer.  Tami is a two-time breast cancer survivor.  The book tracks the stories of twenty-seven survivors with different types of cancers.

~ Breastless in the City: a young woman’s story of love, loss, and breast cancer by Cathy Bueti, another cancer blogger.  The subtitle pretty well sums it up.

~ Stand By Her: a breast cancer guide for men by John Anderson.

~ Cancer Healing Odyssey: the remarkable story of Sun Hee’s ongoing recovery from stage IV ovarian cancer by Sarto Schickel.  A Korean woman, her American husband and their story of conventional plus alternative healing approaches to a dire diagnosis.

~ Killing Cancer: the remarkable anticancer effects of antidepressants by Julian Lieb, MD