Member Profiles

Andre

Hello, my name is Andre and I have been a member of the Boston Cured Cancer Club for Laryngectomees (BCCCL) since the
summer of 2008. At this writing, I actually haven’t missed a meeting! I first learned of the group through my
surgeon who arranged for me to meet with a member of the group just prior to my surgery. It was through this meeting
with Maureen, a very dedicated and just recently, dearly departed outreach worker, that my wife Ginny and I could see
that life would truly go on after my surgery. Along with a nurse practitioner at Dana Faber Cancer Institute in
Boston, Maureen shared some of her journey as a laryngectomee. It was as if Maureen had shone a flashlight into the
darkness of the unknown. Ginny and I left that meeting with the assurance that it was going to be OK.

As a life-long non-smoker, my family, (wife Ginny, son Peter, daughter Elizabeth and son-in-law Michael), were totally
shocked when I was diagnosed in February, 2008 with a very rare form of cancer in the larynx cartilage. A
tracheostomy to secure my airway, which was 75% blocked by the tumor, was followed five weeks later by a total
laryngectomy at Brigham and Women’s Hospital in Boston. I also received seven weeks of follow-up radiation at
Dana Faber. My prognosis is great. Early in my recovery, for about a month, I communicated by using a pen and pad
of paper, as well as a text to voice computer program which Michael was instrumental in putting together. I then
used an electro-larynx until my September tracheal-esophageal puncture (TEP) allowed me to transition to
tracheal-esophageal speech. I eventually learned how to use a hands free valve with tracheal-esophageal speech.

I work as an electrical design engineer in southeastern Massachusetts. I returned to work full-time within 6 months
of my laryngectomy. Although my adjustment to life as a laryngectomee has been challenging, I am ever so grateful
to be alive and to be a part of all the simple, little things,that make life so special. Sharing a meal with family
and friends on my screened porch overlooking Ginny’s garden and a small patch of woods in my back yard, helping
Elizabeth and Michael with home projects, visiting Peter in New York City or walking a Cape Cod beach at sunrise
or sunset with Ginny have always been a sources of great happiness. Since becoming a laryngectomee, these moments
are all that more precious.

Maureen, my outreach visitor from the BCCCL, was right. Life does go on. It may change, but it can still be
wonderful. Ginny and I are very grateful to be members of the BCCCL. It is so inspirational and affirming to
meet with others who have experienced a laryngectomy. It is also very gratifying to be able to offer support to
a new member.

During the early days and weeks of my diagnosis, surgeries, radiation and recovery, Ginny came across the acronym:
H.O.P.E. = Holding Onto Positive Expectations. When uncertainty and fear would start to overshadow a situation,
we would remind each other to hope for the best….to hold onto positive expectations! During my adjustment to the
whole process, I would often be heard saying, “Just gotta keep moving forward!” And so we did and now truly enjoy
sharing precious moments of simple pleasures.

 

Bob

We are pleased to introduce Bob and his wife, Marie. Bob had his laryngectomy at Brigham and Women’s Hospital in
Boston in February, 2004. In September of that year, Bob joined The Boston Cured Cancer Club for Laryngectomees and
found a wealth of support, particularly with using his electrolarynx. His Nu-Vois III Digital electrolarynx serves
him very well as his electronic voice is very clear. A retired Cambridge firefighter, it is not unusual for Bob to
be accompanied by not only his wife, Marie, but by his sister, Pat and four of his lovely daughters: Linda, Debbie,
Carol, and Sandra. We even get to see his grandchildren sometimes! We’re all familiar with the expression, “Love
makes the world go round”. That certainly seems to be the case with Bob’s family!

 

Martha

BCCC Profile: Martha from Vermont

Esophageal cancer survivor since March 2000. (Dartmouth-Hitchcock Medical Center)

Tracheostomee since August 2002. (Dana Farber Cancer Institute)

Laryngectomee since March 2006 (elective surgery for esophageal reconstruction), (MEEI)

Member of BCCC since 2002. Currently on the BCCC Hospital Visitation Committee.

Type of communication device: Upon laryngectomy, AL for 4 months, TEP since July 2006.

Occupation; medical coder for emergency department of acute care access hospital in north central Vermont.

Interests: reading, movies, cooking, gardening, travel, my two beagles, beagle rescue volunteering.

“Words of Wisdom”: Never underestimate yourself. Never lose hope. Never lose your sense of humor.

My story:

I was diagnosed with Stage IV throat cancer in November of 1999, I was 39 years old. It was unknown if my
cancer could be successfully eradicated. In addition, due to complications during a day procedure
(placement of a gastric feeding tube) prior to my treatments I contracted necrotizing fasciitis. This bacterial
infection has a fatality rate in the high 90’s. I was not expected to survive it. After 5 weeks of unconsciousness,
and 6 weeks on life support, my 40th birthday present was to walk again for the first time in over a month, it was
a challenge, and I required weeks of physical therapy due to the amount of atrophy my body experienced. The
next 12 weeks were consumed with daily radiation treatments and weekly chemotherapy infusions. About half way
through the treatments I lost the ability to eat due to the radiation damage to my throat. In March of 2000 I was
told my cancer was gone, but that I would never eat again. I returned home after 4 months at Dartmouth-Hitchcock
only to spend 9 more months in bed, connected to a feeding pump. I refused to accept the condition that my
treatments left me in. I had more than one doctor tell me I would never eat again in my search to find someone
who could help me. I spent 6 ½ years searching, 6 ½ years with a feeding tube, 6 ½ years unable to eat. This was
emotional and psychological torture, every day, for years that I thought would never end.

Two years after my cancer treatments I began having difficulty breathing. The radiation damage continued compromising
my trachea. At 41 years old I could not climb a flight of stairs. And I had a tracheostomy performed at Dana Farber
to alleviate my breathing problems.

Then, one fabulous day in late August of 2005 I had the great fortune of meeting Dr. Daniel Deschler of MEEI. Just
a few months later he performed a 10 ½ hour surgery to reconstruct an esophagus with a tissue graft from my left
forearm. This surgery required the removal of my vocal cords. It was March 27, 2006. One month later I was
eating again for the first time in 6 ½ years. The very first thing I ate was a 6 inch tall chocolate mousse cake.
I will never forget it.

During those difficult years I often joined the BCCC meetings on the first Sunday of the month at MEEI, this was
the only place I ever felt I belonged. I met Maureen Buzzell of the BCCC at Dana Farber after my tracheostomy was
performed, she welcomed me into the group and in doing so gave me a new “family” and a tremendous amount of support
from all of the members. My relationship with this group has lasted 8 wonderful years.

Living alone, in my small house, with my two dogs, on 10 acres of land, in the mountains of north central Vermont, I
regained the ability to work after 3 years of struggling with my recovery (2000 – 2003), and dealt with the loss of a
15 year career in the stock market. In 2006, with the ability to eat, came a healthier body (no longer on canned
formula), a new social life, and the ability to date… Post laryngectomy, I met my current life partner – I never
thought anyone would be interested in a woman with a hole in her neck. Boy was I wrong!

I am now in a wonderful relationship, am very successful in my new career, am taking classes, am traveling, and
eating everything in sight!

 

Please get in touch with the BCCC support group and share your story with us. We look forward to meeting you.