getting through it

Woman holding a pink paper smiley face - fotolia

Dashing through the snow
In a one horse open sleigh
O’er the fields we go
Laughing all the way.

You probably recognize that verse from Jingle Bells — But it’s those last two lines, O’er the fields we go, Laughing all the way, that have always been for me a powerful image for having fun and living life to the max. Even in areas of the country where we don’t get much snow, we do a lot of dashing through our daily lives. And if we’re not laughing all the way, we’re missing opportunities for finding joy in our journey.

So in October of 2003, when the executive director of Florida Hospices and Palliative Care asked me to present a keynote at the state volunteer symposium, I knew what the title would be. She wanted it to be something about humor and the importance of finding humor while working with hospice — both for the patients and the caregivers. I suggested, “Laughing all the way” for the title and she agreed. Then I began thinking about humor — reading books and articles about humor research, looking for funny stories, and finding ways to bring humor into our lives. Little did I know then how significant that title would become during the months ahead.

Just two weeks after I agreed to do the speech, I went for my annual, routine mammogram at Mayo Clinic in JAX. That led to additional magnifications, but that didn’t worry me. I always needed additional magnifications because of fibrocystic mastitis and calcifications. Then they said they needed to do an ultrasound — no big deal. And then there was an area of concern and I needed to have a needle biopsy. Whoathat was different. The radiologist said I could get the results from my primary care physician in St. Augustine in a couple of days.

So I just went on with my life assuming everything was OK. It always had been before. Coming back into town on a Friday afternoon, I stopped by my doctor’s office to get the biopsy results. The receptionist said my doctor had been called away on an emergency and asked if I’d like to see another doctor. “No thank you, I just want to get the biopsy results.”

She asked me to sit down. A few minutes later a nurse called my name and said, “Dr. Soandso will see you now.” I figured that wasn’t good news. If the results had been negative, she would have just told me.

The nurse led me back into his office, and he motioned for me to sit down while he read through some papers on his desk. Now I know you can’t graduate from med school when you’re sixteen years old, but honest to goodness that’s exactly what he looked like.

Without ever looking at me, he began struggling to tell me I had breast cancer. First of all he read the pathology report to me. Words like 1 centimeter, stage 1, ductal, estrogen positive. What the heck did that mean? It was like hearing a foreign language—is 1 cm. big or little, is stage 1 good or bad, what’s ductal, I thought all women were estrogen positive—did you want to be negative? While I was trying to figure all that out, he said he would schedule me for a couple of pre-operative tests that he knew my doctor would order. Preoperative—does that mean I’m going to have an operation? He asked if I had any questions and I asked if I was going to have surgery. He said it would depend. On what?

He still had not looked at me. He said he wanted to refer me to the Breast Clinic at Mayo and I agreed. Silence… I just let him flounder around for a while longer, but began to feel sorry for him and his discomfort. I was the one with breast cancer and I felt sorry for him! Finally I came to his rescue by saying, “I guess this is not a total surprise. The radiologist who did the ultrasound told me that it did not look like normal breast tissue.”

He seemed relieved. As I stood to leave, he continued to avoid looking at my eyes and then he said the first compassionate thing he’d said since I arrived, “I’m sorry I ruined your weekend.”

That was too much. I leaned across his desk so that he couldn’t help but look into my face and said, “My weekend? Excuse me, but I think there’s a lot more involved here than my weekend!” And then I started laughing, and laughed all the way to my car, probably to keep from crying.

The following week, my husband Wilton and I went to the Mayo Breast Clinic in Jacksonville — and almost every doctor there examined me. Dr Edith Perez, head of the breast clinic; her physician’s assistant, an oncologist, an oncology radiologist, etc. My husband was with me every step of the way. In each office I’d put on a robe, go into a waiting room, lie down on the table, open up the robe, get examined, take off the robe, get dressed, go to the next appointment, and repeat all of the above. They asked if I would agree to be part of the Akron study that was trying to determine if MRI’s were a better diagnostic tool. I’d get an MRI done for free and so I agreed.

We went to get some lunch before seeing the final doctor — the surgeon. As we left the Mayo cafeteria, Wilton announced in a very loud voice, “If there’s anybody here who hasn’t seen Diane’s breasts, the final viewing will be in about 15 minutes.” Nobody stepped up.

The surgeon explained my options and we decided on a lumpectomy with follow up radiation. He asked if I would agree to be part of another study. This one was to implant radioactive isotopes in the tumor area to guide his knife during surgery. That would reduce the size of the incision, which sounded good to me. He scheduled surgery for the following week — and we left, exhausted.

I went back the following day to have the MRI — and that’s when they discovered a tumor in my other breast. Back to the surgeon who said it was almost a mirror image of the first tumor and would need the same surgery. “Fine, at least I’ll stay balanced,” I said.

So he had to reschedule the surgery at St. Luke’s hospital since this one would take longer. The last time I had surgery was when I had my tonsils out at age 5 — when they promised all the ice cream I wanted, slapped a mask over my face and told me to breathe deep — so I was pretty apprehensive about the whole thing.

They installed the radioactive pellets and a guy from the Health Physics Department came with a Geiger counter and confirmed that I was indeed radioactive. When I woke up after 4 ½ hours of surgery, the surgeon said things looked good and he’d call me with the final tumor pathology in a few days. Then he said we could go. Go where? I couldn’t stand up, but finally they poured me into a wheel chair and Wilton went for the car. I was in a total fogbank. Anesthesia brain is a strange thing — almost like having an out of body experience. I floated through the next 2 days, until the surgeon called and said, “Diane, I’ve got some good news and some bad news.” WHAT? “The good news is the cancer is not in your lymph nodes—and that really is good news — and the bad news is we didn’t get clear margins.” What does that mean? I thought clear margins were ones you hadn’t written in yet. He said, “We didn’t get it all and will have to do more surgery.”

“Why don’t you just put in a zipper, and then you can go in and out as much as you need to?” I snipped.

The surgeon was not amused. So I was scheduled to go back the following week for more surgery.

About this time I noticed that people who knew me started talking to me in a new way. They’d take my hand and in a quiet voice say, “How are you doing? How are you feeling?” I know they were trying to express concern but I wanted to say, “Hey, it’s me, Diane — the same old person — and cancer did not change the way I hear or talk.”

The best card I got was from my good friend Jeannine. On the front of the card a doctor’s shingle said, “Dr. I. M. Cuttin — Special today—breast reconstruction” and inside it said “Three for the price of two.”

After the second surgery I had to heal for a month before starting 6 weeks of radiation therapy. About 2 weeks into the radiation, I was beginning to get really red — but not as bad as near the end, when I looked like I’d been in a nuclear blast. One of the nurses suggested that I go to a health food store to get fresh aloe with no preservatives and slather that all over the affected area after every treatment.

And that’s what I had done one day and was sitting at my computer with a thin white t-shirt covering the whole, slimy mess. I thought I heard a voice coming from outside “Diane, Diane, Diane.” But nobody would be calling me from outside — Wilton was working downstairs in his office. I must be imagining it.

Then the telephone rang and I heard a lot of heavy breathing. I thought it was an obscene call and almost hung up, but heard a vaguely familiar voice gasping, “I’ve broken my leg — come out to the backyard.”

I ran out the door and there was my husband lying on the ground, writhing in pain. I yelled, “I’m calling 911.”

He managed to say, “No, just get the car over here and take me to the emergency room.”

So I ran inside, got the keys, threw on a jacket, and backed the car across the yard. I managed to get him into the car, although he passed out from the pain. At that point I just had to drag him face down into the back seat and took off for Flagler hospital.

Actually getting him into the emergency room was a nightmare and I’ll never do it again — always call 911! I pulled up at the entrance, ran inside and said, “I need help getting my husband out of the car.”

The receptionist said, “There’s the wheelchair.”

“I can’t get him out of the car — he’s lying face down in the back seat,” I screamed.

“Well, I’m no bigger than you are, I can’t help — and by the way, you’re going to have to move your car — you’re blocking the entrance to the emergency room.”

“But this is an emergency and I need help!”

Two other people waiting for treatment volunteered to help or I’d still be there. The three of us managed to get Wilton into the wheelchair. The woman pushed the chair while the man tried to steady my husband’s foot which was free balling around—held on only by his skin, and I moved the car.

When our name was called at last, I said, “I need help getting him back into the treatment room.” The guy who had helped me get him into the emergency room said, “Lady I’ll be glad to push the chair, but I’m not touching that foot again.”

Finally we got back to the treatment room and I realized I was burning up — a major hot flash because I no longer took hormone replacement therapy, which I’m convinced was what caused me to get breast cancer in the first place. But I couldn’t even take off my jacket because all I had on was that thin white t-shirt soaked in aloe, which wasn’t so fresh any more.

So Wilton had broken both bones in his ankle and had to have extensive surgery to put it back together again with plates and screws, which required staying in the hospital several days. Meanwhile I was driving back and forth to Jacksonville every day for radiation. Once he got home, instead of taking care of me, I was taking care of him — getting him down the stairs to his office every morning and icing his ankle down. Oh, did I mention that our house was for sale? So I had to clean up the house in case someone might come to look at it and then drive 45 miles to Mayo for my treatment…every day! Lying on the radiation table was actually pretty nice — some of the best rest I got all day. The radiation technicians always doubled over with laughter as I told them all I had done to get there each morning. So many funny things that happened that I can’t even remember them all.

And now I’m years away from all of that and no longer taking the follow-up medication that made my joints ache and caused intense hot flashes. I have frequent check ups — and humor still abounds. I know breast cancer is a really serious matter, but being diagnosed with it offers countless opportunities to discover humor while dealing with adversity. Finding the humor was certainly important in getting me through all of it and it gave me a lot of good material for that keynote.

Humorous things happen around us all the time, if we just take the time to recognize them and laugh at them. I wonder if I would have seen it all if I hadn’t been preparing for that speech. But here’s the thing I learned: I would have gone through all those same events — no matter what — and it was so much easier and a lot more fun—laughing all the way.

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Diane Rooks

Diane Rooks

Diane loves telling stories to audiences of all ages and teaching people about storytelling. She's been involved in storytelling and public speaking for many years and uses those skills to create programs and stories to help people navigate changes in their live. Her storytelling path changed direction following the death of her son when she realized that stories were the key to her own healing process. She grew stronger by remembering and telling stories of her son, which kept him present in her daily life. Selected milestones on her journey: Masters Degree in Storytelling - East Tennessee State UniversityAuthor of Spinning Gold out of Straw - How Stories Heal and the new CD/audiocassette - "Selected Stories from Spinning Gold out of Straw"Frequent teller on WFCF-FM Treasury of TalesLiving history performer for St. Augustine Lighthouse and Museum and St. Augustine Historic Preservation BoardStorytelling World special advisor and contributorHealing Story Alliance secretary and resource coordinatorPerformer in dozens of festivals including Atlanta Storytelling Festival, Florida Folk Festival, Gamble Rogers Festival, Cracker Festival, Stephen Foster Festival, Caladium Festival, Florida Citrus Festival - and othersPresenter at the national conference of The Compassionate Friends, an international organization for bereaved parentsMember of National Storytelling Network, Southern Order of Storytellers, Florida Storytellers Association, and Tale Tellers of St. Augustine.Former board member of FSA and Tale TellersState representative and judge for the National Storytelling Youth OlympicsCertified bereavement facilitator - American Academy of BereavementFacilitator of local chapter of The Compassionate Friends organizationKeynote speaker -- Community Hospice of NE FloridaContributor to Sandspun -- Florida Tales by Florida TellersTeacher for school students developing stories from historyTeacher and coach for performers at World Golf VillageCultural exchange student at University of Edinburgh, ScotlandPerformer for ElderhostelStoryteller for Camp Healing Powers - a bereaved children's campDiane is a native of Atlanta, Georgia and holds an AB from Georgia State University in Psychology and Information Systems and an M.Ed. from ETSU. In addition to her deceased son, she has two daughters and six grandchildren. She and her husband, Wilton Rooks, live on Lake Lanier, near Atlanta, and enjoy sailing and traveling.