Pat Sanders, Editor
Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
A Different Kind of Cancer by Libby Fitzgerald LiJoFitz@aol.com
We are all survivors with our own stories to tell. We have many things in common, but since there are many differences, I was asked to share my story about surviving a different kind of cancer.
As a healthy, active non smoking person with no obvious symptoms or indications, I was the last person who'd ever suspect something was seriously wrong. I'd had an enlarged thyroid for several years, but was under the care of an endocrinologist who prescribed Synthroid and had done a couple of needle biopsies with everything coming back negative, so I wasn't worried.
Back in the fall of 1992 when I had a routine checkup, I mentioned to my doctor that I got easily winded, especially when climbing hilly terrain. I also told him that whenever I coughed, people would comment that it sounded strange. I didn't cough a lot, so it seemed more an oddity than a problem. He did a thorough exam, checking out my heart, which was strong and normal and x-rayed my lungs which were clear and healthy. When listening to my breathing with the stethoscope, he did detect a raspy sound and thought it might be an allergy. As a busy, full time realtor, the last thing I wanted was to get locked into a weekly trip to an allergist, so I decided to ignore it all and go about my normal life.
When things didn't improve, my husband began pressuring me to look into it further. By late spring of 1993, I decided to stop procrastinating and see an allergist. She did all the standard tests and found that I was allergic to nothing. While it was nice to hear, I still needed to get to the bottom of this "annoyance". I then went to a local ENT who used that lovely up-the-nose scope, but when he tried to look further down my throat, he found something constricting my trachea. This called for a CT Scan, which revealed a growth starting in my thyroid and extending into my trachea to the base of the vocal cords. The scans were forwarded to my endocrinologist who couldn't believe that this 'thing' belonged to me.
Apparently, it was in a location that wasn't reachable from an external probing. He then sent me to Columbia Presbyterian Medical Center in NYC to see a head and neck surgeon since this growth obviously had to be removed.
When I met with that surgeon, he ran over the full gamut of possible results with the worst case scenario being the removal of the larynx. I was stunned with that suggestion because my career as a realtor depended on verbal communication, not to mention that I've always been a talkative, sociable person. I pleaded with him to consider that only as a last possible resort. Psychologically, it was inconceivable to me.
Since all pre-op tests came back negative, he seemed fairly confident that it was benign. However, during surgery, when he analyzed a slice of the tumor, it turned out to be a rare, but malignant, type of cancer called Adenoid Cystic Carcinoma (ACC). He removed my thyroid and most of the tumor up to the base of the vocal cords, thus sparing my voice box. However, I ended up with a collapsed lung which necessitated a tracheotomy. (Who knew that this was a practice run?) Once the surgery healed, the doctor felt that the rest could be killed off with radiation and that would probably be the end of that. HAH!!
At this point, it struck me how incredibly important the support of others was to my recovery. My husband was truly amazing, this guy who avoided hospitals and medical 'stuff', helping to clean the area around the trach where I couldn't see, fixing meals, doing laundry for the first time since we were married. My children did the shopping and housework and whatever else was needed. Friends and neighbors pitched in with prayers and meals. Perhaps most amazing of all were the coworkers at my office. Without any request or expectation, they called to inform me that they had filled in a calendar with each of them signing up to drive me to each of my 36 radiation treatments so my husband wouldn't have to rush home after work to do that. The surgery was in August and I was back at work in November. This was a joyful period, where I could go for hikes in the woods or in winter, on cross country skis and not get winded. My old stamina returned, I was busy at work and life was good.
After about 3 years, I noticed the breathlessness starting to return. I had been getting scans done every 6 months but they showed no change. The doctors felt that scar tissue had caused the narrowing of the trachea. Removing it would be a catch-22 because additional surgery to remove the scar tissue would cause new scar tissue. Then the hoarseness started coming more frequently and was interfering with my ability to work.
I won't go into all the details of my frustrations with the medical "experts", but suffice it to say that the nature of this cancer was understood by none of them and it was only with my own stubborn perseverance, determined to seek a solution, that I finally found a surgeon at Mt. Sinai Hospital who learned the true cause of my problems. This insidious cancer was hidden under the scar tissue and had traveled along nerve paths and now fully involved my larynx. Five years after the initial cancer surgery, I had to face the inevitability of being a laryngectomee.
Although it was a shock to learn that I would lose my vocal cords, this compassionate surgeon arranged something that gave me hope and optimism. He had me meet with his SLP who carefully explained what would happen during and after surgery. She then did something I will always remember with extreme gratitude; she called a patient who spoke with a TEP and put me on the phone so I could hear her and ask any question that popped into my mind. Just knowing that a lary could speak with a real voice and be clearly understood was the best thing that could have happened at the time. I was given a booklet explaining what being a lary would involve and encouraged to ask the doctor any questions that might come up. This SLP urged me to contact the American Cancer Society to find a local support group. Because of the slow growth that typifies this cancer, I had a month to get things in order before surgery. I met with the coordinator of the local New Voice Club, plus a delightful, feisty woman who spoke with a Servox.
They were all truly my special angels! Sure, things didn't always go smoothly during recuperation, but just knowing what was possible was the best motivation. A few months after surgery, I discovered WebWhispers, and what a revelation that was!
The surgery took place September 18, 1998. I went back to work 5 months later as "Rita, the Real Estate Robot", speaking with a Servox. One thing we know for sure, every caller recognized my new voice! So many funny incidents happened and so much love and encouragement was given. I had to scale back some aspects of my work, but the bottom line was that I was still able to sell houses and I continue to do so.
I now speak comfortably with a TEP (hands free...YES!!!) and have gotten back to answering the phones at my office as well as doing many other things that fulfill my career. At some point in the future, when I decide to retire, the timing will be my choice and not circumstances that force me. In so many ways, I am very lucky. I've learned that many with this form of cancer have been terribly disfigured, losing ears, nose, eye sockets, palates, tongues, jaws, cheekbones. Many are dealing with constant or frequent pain or have metastasis to lungs, liver and brain, because of being improperly diagnosed for years. It's possible that I'll have some difficulties years down the road, recurrence being the nature of ACC, but for now, I treasure all that life has to offer. I plan to continue doing community outreach, gardening, cooking, traveling, and anything else I choose.
I often forget that I'm not the same as I always was and that in itself is a victory. Right now, I'm about to become a grandmother for the first time. As the title of the movie said, "Life is Beautiful".
A "Hint" from Libby
I use the Tru-Seal disposable housings with adhesive (Skin-Tac "H") and here’s how they work for me. First, I gently clean the area around the stoma with plain soap and water, followed by alcohol. After that dries, I use a protective barrier wipe, either Shield Skin or Skin-Prep. This gives the adhesive a good base and protects the skin from irritation. I then apply a thin coat of adhesive to the area where the baseplate will go and wait about 4-5 minutes. (I use this time to do other grooming things which help the time go faster) I apply a 2nd thin coat and wait another 4-5 minutes. Now, I carefully place the baseplate around the stoma, making sure there are no wrinkles. At this point, I gently but firmly keep pressing the whole baseplate to work the glue in thoroughly. I then pop the hands-free valve in (with HME filter) and it’s done. I’ve also found that waiting about 15 minutes before speaking gives the bonding a better chance. When it’s time to change again, I use adhesive tape remover pads which I pick up at a local medical supply store and that’s that. It should work.
Last year, we opened an American Cancer Society facility, the Joe Lee Griffin Hope Lodge, on the Birmingham Southside, joining 16 Hope Lodges in 13 states in offering this wonderful service. Several more lodges are under consideration or already being constructed in other areas.
Cancer patients who live 50 miles or more from their Birmingham treatment center and require at least an overnight stay for outpatient treatment are eligible to stay at the Lodge, along with their family members, free of charge (although donations are appreciated). These facilities play an important role in reducing the cost, inconvenience, emotional strain, and isolation that accompany a cancer patient's extended stay away from home.
These are non-medical, non-smoking facilities, and no alcoholic beverages are permitted on the property. While facilities vary with the locations, the one in Birmingham has 33 sleeping rooms with private baths. In the common area, there are kitchen, dining, and living areas, in addition to laundry facilities. Patients or their companions are expected to purchase their own food and prepare their own meals, keep the common areas tidy, and their own rooms clean. Residents must be independent and capable of self-care or be accompanied by a person who will assume the responsibility.
Space is allocated on a first-come, first-served basis and there is often a waiting list so it is wise to get your name on the list early if you see the need for treatment. Admission is coordinated by the lodge manager and your referrals must come from the patient's physician or designee who will contact the Hope Lodge staff and initiate the admission process.
Joe Lee Griffin Hope Lodge- Birmingham
Address: 1104 Ireland Way
Birmingham, AL 35205
Phone: (205) 558-7860
Toll-free number: 1-888-513-9933
Fax: (205) 558-7862
Contact Person: Angelia Taylor (email: firstname.lastname@example.org)
For more information and for other locations, check the American Cancer Society web site: http://www.cancer.org/
In left hand column, click on Living with Cancer
Scroll down and click on Programs and Services
Select a Document to View – Select ACS Hope Lodges, then choose
American Cancer Society Hope Lodges (for information)
American Cancer Society Hope Lodges Listing (location of 17 present lodges)
Addresses and telephone numbers for individual lodges are available at that site or you may call 1-800-ACS-2345 for more information. Please check the lodge you are interested in for any variations in the rules.