A Day for Ray: Malignant Brain Cancer Takes a Back Seat to a Rock Band, Food, Balloons, Laughs and, Most of All, Love.
Judging by their smiles, Ray and Bobbi, shown above, obviously do not know how to let Ray's malignant brain tumor rule their lives. Shouldn't someone tell the couple, gently of course, that one just does not put on a happy face when one has such a deadly disease?
Or maybe, just maybe, they have something to teach us. Read on ...
For some time, Ray had been saying that he “didn’t feel right.” He complained of headaches. He had trouble reading and driving. Then he sideswiped another car and caused a minor accident. Finally, he went for a PET scan and other tests.
The verdict earlier this summer could hardly have been more serious: malignant brain cancer, specifically glioblastoma in the parietal area of the brain, behind the right ear. This was the same cancer that the late U.S. Senator Edward Kennedy had.
Unlimited money and some of the world’s best medical and surgical brains could not save Senator Kennedy. He died just over a year ago.
Fully aware of what he was up against, Ray could not just cave to the cancer. With Bobbi’s full support and love, he chose life. At the Dana Farber Cancer Center in Boston, he and Bobbi told his doctors as much.
Doctors said that for Ray to have any hope of surviving, the cancer had to come out. Ray and Bobbi gave the go-ahead for the surgery. In the first week of June, Ray had the surgery at Baystate Medical Center in Springfield. He went in on a Wednesday and was out of the hospital that Friday.
In the recovery room, Ray woke up to singing “Gypsies, Tramps, and Thieves.” He had been listening to Cher singing that song on his IPod. Coming out of surgery singing? Talk about spirit! Talk about will to live!
The surgery had removed 90% of the tumor. More of the tumor could have been removed, but doctors were afraid that might be too intrusive. They feared that his cognitive abilities could be impaired or that he could be left paralyzed.
Surgery was followed by extensive chemotherapy and radiation. Ray is now finished with the radiation, but will be on chemo for the rest of his life. He takes the chemo at home in pill form.
When Barbara and I heard the news from Bobbi’s Aunt Joanie, we were shocked, felt helpless, and were not sure how to respond to such awful news. Ray and Bobbi, a cousin to Barbara, are longtime dear friends. “Malignant brain cancer,” Barbara said. “You don’t know what to say.”
We didn’t want to call. Talking on the telephone about this terrible brain cancer didn’t set right with us: too remote and impersonal. We decided to express our support through cards, three of them over several weeks. The first was entitled “The Oak Tree” and, in verse, told of how a mighty wind failed to fell one oak tree “while other trees fell all around.”
The verse went on:
“The weary wind gave up and spoke,
How can you still be standing, Oak?”
The oak replies, “... with thanks to you,
I’m stronger than I ever knew.”
The card, and Barbara and I in a personal note, were suggesting to Ray and Bobbi that they can be just as strong as this oak tree. Several cards with personal notes followed in the hope that Ray and Bobbi would find some encouragement and strength in them.
As if malignant brain cancer were not enough for Ray and Bobbi to contend with, money reared its ugly, dollar-signed face. No longer able to work at his well-paying job at Cox Communications, Ray’s income was no more. In addition, Bobbi has gastrointestinal problems that recently became so severe that she had to leave her work at Mass Mutual and go on disability.
Two paychecks gone. Bills go on.
Actually, the bills have gone up. When Bobbi went to a pharmacy to pick up prescriptions, the tab was over $10,000. “What?” a stunned Bobbie asked. She followed with a piece of her mind. She is fighting such outrageous charges.
To help Ray and Bobbie financially, Cox Communications where Ray had worked for many years, organized a fundraiser, A Day for Ray, at the Elks Lodge, 250 Whitney Ave. in Holyoke, Mass. With Cox providing food and raffle prizes along with other businesses, the fundraiser was held on August 29, 2010 from 12 pm to 5 pm.
A sure measure of how much Ray and Bobbi are loved, the place was packed. Barbara and I arrived with no little trepidation. The last time we had seen Ray and Bobbi was in April before he was diagnosed. We had not talked to them since. We didn’t know what to expect. We were nervous.
We needn’t have worried.
What’s this? Balloons? People laughing? Smiles everywhere? Is that a rock band setting up? It is! Why, it looks like... feels like a ... a... a... PARTY!
Ray, newly bald and neck swollen, sat smiling at a table holding court. He was surrounded by people hugging him and kissing him and joshing with him, while many others waited in line to do the same. Barbara and I were among them.
When Barbara got to Ray, she gave him a big hug and said, “This is the big hug I have been waiting to give you. And how are you doing?”
“OK,” he said, not smiling, in fact, somberly.
It was my turn. In a split second, I decided to bet the pot. I put my arm on Ray’s shoulder, stuck my face in his, and, pointing at his bald head, said, “I see you’ve finally done something about that disgusting head of hair of yours. You’ve gone bald like me. Congratulations.”
He laughed. And it was a real laugh, too. Yes!
Later, Bobbi told me that Ray doesn’t like rehashing the cancer. It’s there. He knows it. And he’s dealing with it. Everybody in that crowded room seemed to sense it.
Of the many conversations that Barbara and I had during the five hours we were there, the word “cancer” was hardly mentioned. There were no glum faces, only happy ones. What was this, mass denial?
From where I sat, not in the least. People were merely telling malignant brain cancer to take a walk for these few hours. It was a spontaneous and joyous affirmation of life, love, family, and friends.
The hall was full of mini reunions with tight hugs and teary eyes. When little Calista and Arianna first saw their grandma Joanie, they lit up and ran into her arms.
Joanie and her twin sister Helen may have been born together on the same day, but life led them to make lives in Massachusetts and Illinois respectively. But today they were together and enjoyed every second of it, as is so obvious in this photo of them.
No, this Sunday was not about cancer. It was about people. It was not about dying. It was about living. As Ray said to me, “I’m not going anywhere.”
One other thing. As Barbara and I were getting ready to head out to the fundraiser, she asked if I was going to take my camera.
“I don’t think so,” I said. “I don’t think it would be appropriate. I don’t want to stick a camera in people’s faces when the occasion is about terminal brain cancer.”
“Maybe you should bring it,” Barbara said.
I did. When I walked into that large space, the second thing I noticed (the first being all the happy faces) was that everybody was snapping pictures. Out came my camera. And here are some of the scenes that caught my eye.
Mom JoAnn and stepdad Roy with Laura, 13. Laura and I have taken to kidding each other. She asked me if I would buy her a drink and I got it (not the drink, the joke). I told her I didn't like being around old people and she got it.
|Look at them Go!|
In the years to come -- and may they be many -- may this account and these photos recall a joyous day with family and friends. May they tell you over and over how much you are loved and that you have family and friends who will always be there for you.
From all of us...
P.P.S. When Ray and Bobbi went into Dana Farber this week, a smiling nurse practitioner greeted them. "I have some good news,"she said. "The tumor has shrunk." She told them that the 10% of the tumor remaining after the surgery was now 30% smaller. "You may be breaking new ground here," I said to Ray. He smiled but his face quickly turned into a portrait of resolve. "This is going to be a happy ending," he said firmly.
Note: Ray died December 8, 2011