MESOTHELIOMA SURVIVORS & FIGHTERS
Thousands of people are living with malignant mesothelioma and fighting the disease as best they can. These are just a few their stories.
BELLE MCGUCKIN OF MANITOBA, CANADA, 1999
The Symptoms and Diagnosis
In July of 1998, I had a heavy, bronchial-type cough. My doctor said if the cough did not go away completely to come back and see him. At that time, he gave me a chest x-ray, which showed a pleural thickening on my right lung. I was sent to a respirologist who in turn sent me to a thoracic surgeon for an open chest biopsy. It was three months from when I first went to my G.P. with the cough to when I was diagnosed on Oct. 23rd with metastatic mesothelioma.
I was told many times how I don’t fit the profile –generally men in there 60s and 70s who’ve worked in asbestos-related industries. But I had it and I was told there was nothing that could be done as mesothelioma is always incurable and fatal.
Belle’s Reaction
Many of us wonder what we’d do if told we had a terminal disease. It had crossed my mind in the past especially when I’d heard of people I know who had been given such devastating news. Of course, I couldn’t imagine what they’d be going through – but now I can.
My first reaction was disbelief. I told the surgeon, "How can you tell me I’m going to die? I don’t feel sick." To which he responded, "You soon will." And there were tears. I think it was harder on my family than it was on me. I guess they felt helpless and full of despair.
The first three days after diagnosis were the worst. I cried constantly. I didn’t eat. Then on the third day I received my first ray of hope.
Finding Hope and Help
My sister and two friends had started cruising the Internet looking for information on mesothelioma. One of the women found the Mesothelioma Web. After a 20 minute conversation the clouds started to clear away.
I became encouraged to pursue a cure or treatment. I was told that there are survivors of this disease and people who were living with it. I was advised to look into the various research that is going on.
This conversation gave me what nobody else had – HOPE –and I was buoyed. I was also hungry, all of a sudden, and I tucked into a big meal of steak and onions, potatoes, peas and carrots.
From then on, I wanted as much information as I could get – the latest up-to-date information. Not having a computer, I relied totally on my sister, Malveen, and the two friends, Judith and Rosemary. They found all sorts of information and I spent a part of each day sifting through papers, contacting doctors, researchers, and others diagnosed with the disease.
The more knowledgeable I became, the more empowered I felt. Of course, there were still plenty of tears and days when I felt that I was never going to find an answer.
Choosing a Physician
Finally, after researching, I decided the doctor I wanted to try and cure me was Dr. David Sugarbaker, chief of Thoracic Surgery at Brigham and Women’s Hospital in Boston. I spoke to him on the phone at the end of November. He told me of a new protocol he had recently started and invited me to come to Boston for an assessment , and to see if I fit the criteria for this trial. My appointment was for Jan. 5, 1999 – approximately 2 ½ months from diagnosis.
I was very nervous while sitting in the waiting room that Tuesday. I knew I fit most of the criteria. My heart was strong; my blood was good; all my other organs were normal; I had no chronic diseases or ailments – but I didn’t know if I was in Stage I or if I was beyond, which would make me ineligible for that particular trial.
Miracles Happen
Then a miracle happened. One of Dr. Sugarbaker’s staff came to tell me that a man that was to be operated on Thursday couldn’t because his disease had progressed too far. Others on the waiting list couldn’t get to Boston on time for this operating room opening. So they were offering the spot to me! Dr. Sugarbaker had looked over my reports, MRI, etc. and I fit! I felt like I’d won the lottery. I met with the doctor and spent the rest of the day doing all the hospital pre-op necessities.
The operation is called an extra-pleural pneumonectomy followed by an intraoperative heated wash. My pleura, lung, diaphragm, and pericardium were removed. Then I was washed out for an hour with a drug call Cisplatin that was heated up to 4 degrees above body temperature. A new pericardium and diaphragm were reconstructed with gortex before I was sewn up 5 ½ hours later.
Recovering
This was a very heavy operation and there is a long recovery period. I know I’m not out of the woods yet – that there may be microscopic mesothelioma cells that weren’t eliminated and have started to divide and reproduce.
But can anyone be sure that something similar is not happening in their body or that when they leave the house this morning that they will come back tonight?
What I do know is that my prognosis is infinitely better than it was at the beginning, which was 0%. Every week I notice myself becoming stronger. My stamina is increasing. To look at me you’d never know I had major surgery. The 14 ½" incision is fading. A doctor told me I’d be able to wear a bikini. That’s great news because I’ve never worn one before! Dr. Sugarbaker told me that I’ll be able to continue scuba diving but, "wait six months."
Perspective
I feel a very lucky and truly blessed woman. The road was made much easier with the strength of my family. My friends, community, total strangers and new friends helped or encouraged me.
I found knowledge was a big factor in dealing with my disease. But HOPE was the biggest inspiration!
