Laurie's Story
I read statistics; that say I have a 6% chance to live at stage 4 with Melanoma. I was never good at Math anyway…I am still here after 6 years. Although… I had a pretty hard fight on my hands, now as I look back; I feel my experience with melanoma has been a gift of sorts. My life has been so different because of it.
I am baffled: why am I still here??? There are several reasons in “my” mind as to why. I’m lucky. Just plain lucky. Lucky enough: to have positive energy in my life. From family and friends who have been there for me, lucky to have, had a team of Doctors that are "aware" of Melanoma, Doctors who have listened and been open to “other” Doctors whom are willing to share their, knowledge. Who knows what tomorrow holds for me.
How it started
And to think it all started like this: walking down the hall in my Mom's house, in my bathing suit on my way to use the bathroom. I had been ‘‘lying out'' in the sun in her back-yard with my sister, Pam. Moma was sitting in her chair probably watching TV or crocheting something for someone. She mentioned this ''ugly, moley thing'' on my back and told me that I needed to have it checked. Of course, I couldn't see it, so I was not concerned at all. Back then, I had never heard of skin cancer much less Melanoma. So, back out into the sun I went without giving it another thought. Slathered on the baby oil, and laid back in the warm sun.
Several months later, having forgotten about the ''ugly moley thing,'' I remember sitting in my GYN's office. It was a small practice and my doctor is female. I liked her a lot and trusted her. I think I was in for my annual physical. She had these new ''gowns'' if you want to call them that! They were short to the waist, and I remember commenting on how she must have bought them for half-price. While she was listening to me breathe, she lifted up the paper gown and said something like, ''Oh boy!'' She asked me if I knew about this Melanoma on my back. Of course, I was not concerned because... that's right... I didn't know what a Melanoma was. That's where it all happened! That's when my skin cancer education started.
That same afternoon I was sitting in a surgeon's office waiting to have a biopsy. It seemed like a dream then and it still does today. The normal biopsy procedure was done and I went back to work with a little piece of gauze on my back covering the black stitches. I was 24-years-old. No fears or concerns, just thinking about the scar!
It's Malignant Melanoma
A couple of days later...I got the call. It was in the middle of the day. I was working as a receptionist in a hair salon. Everyone was hustling around doing their thing; hair dryers blowing loud in the background and everything was just fine, until...I answered the phone. My surgeon, Dr. Becker, was on the line telling me that he wanted to see my husband and me in his office at our earliest convenience. He said, ''Your biopsy came back as malignant Melanoma.'' It was a 0.8 thickness, which could have already traveled into my blood stream. I am trying to recall my feelings. All I remember is I felt numb. I don't remember telling Ron (my ex-husband) anything. But I do remember telling my bosses, Chad and Doug, that I had cancer. One of the hairdressers, Billie (a female), came over and just held me. I remember being more upset that my doctor told me over the phone than I was fearful of having cancer.
That was the first day on the journey that I have been traveling now for 23 years. Weeks later, the mole was removed by a wide incision, which was two inches in diameter around the mole. And if you’ve ever seen a wide incision scar you know they are ugly…huge gapping ugly. The good news was that there wasn't any more Melanoma to be found. The bad news was it left a ten-inch scar across my back. Thinking that it may have traveled through my blood stream, I had a total dissection (removal) of all the lymph nodes in my left groin. The agony was prolonged in waiting to see if the Melanoma had metastasized (spread) to any other place in my body. Fortunately, it had not. At 24-years-old, I thought I was invincible and did not understand the seriousness of Melanoma.
I proceeded to thank God for my miracle and came home to heal after that surgery and actually, I healed very well. I can only say what I know is true for me. I was very secure in the fact that the cancer was removed and had not spread to my blood stream, and went on with my life. Before I realized it, 16 years went by. A lot changes in someone’s life during 16 years: I had grown older, my little boy grew up, I got a divorce, I lost my father and I remarried and was living happily ever after.
the lump
Until, one morning I had a pain under my arm and felt a lump. So, I went to the ER and had it checked. I told the doctor my history (only after she asked) and was advised to go back to my surgeon and have him take a look at it. So, I did. Dr. Becker performed a fine-needle biopsy and it came back negative. It was great news once again.
However, the lump never went down.
Dr. Becker told me that he was getting ready to retire and if I wanted to go ahead and remove it anyway, “let’s do it now.” So, we did. I still didn’t worry about having melanoma again. Actually, it never crossed my mind! I was very confident that the “lump” would be removed and I would go on about my life once more.
OK. Lesson number one: If you know you've had melanoma once, it can return. It’s not a rule, but it most certainly can happen. I obviously didn't know that then.
Feeling very sick upon waking up from surgery, my sweet Dr. Becker was standing over me telling me he was so sorry because he found melanoma there and had to remove all of my lymph nodes. I can't even imagine the look on my husband’s face when Dr. Becker had to go out into the waiting room and tell him “it” was back. However, I do remember I felt numb ... again. Now, I had Stage III melanoma.
Stage III
We went home. I rested, cried, told my son and called my family. The nightmare had returned and another chapter in my life was just beginning. We needed help; we had to find an oncologist. We first saw a wonderful oncologist, Dr. Maples, at Mayo Clinic Jacksonville. We traveled out of state and received several opinions from other doctors. But Dr. Maples is the one for me. He is the best. We called everyone we knew with cancer or they called us after we got the word out. I never thought of keeping it a secret. Some people do. I told anybody that I felt needed to know and anyone else that would listen. I didn’t mind talking about it or listening to other people’s stories, etc. It seems the more people I told, the more energy I felt. I guess I liked the attention too. What-ever…
I was talking with an acquaintance who told me that she that she had a friend with melanoma who didn’t want anyone to know. I couldn’t believe it! The more people who know you have cancer, the more support you will have. It’s very important to have the support of family and friends. Again I’m lucky in that aspect too. I get a big smile on my face and shake my head in amazement when I think about the way people can come together in a time of need. Is this a great world we live in or what?
For the first few months I had Stage III melanoma, it felt like I was waiting for the other shoe to drop. Well, one year later it did. (Guess I should have practiced that power of positive thinking earlier).
Stage IV
One year to the month, actually in July of 1999, the shoe dropped with a loud thud. I just returned from a vacation in Jamaica where I played in the sun like a fool for a week. I was really aware of the heat, but stayed out there any way. I wore sunscreen and stayed in the shade a little, but not enough. I played golf at the famous Tryall Golf Club in Jamaica and splashed around in the pool. I had a blast. I don’t know why I didn’t protect myself from the sunrays more? Maybe I just decided to give it a rest for the week. To eat, drink and be me, I’m not sure. I did NOT get sunburned, yet I think the UV rays affected me more than I realized.
We returned home feeling tranquil and rested. Except, I started having stomach pains after our return; they would come and go for weeks. Maybe it was the odd piece of fruit I had eaten on the golf course that one of the caddies handed to me. He told me the locals make a soup out of it, so I felt it was harmless. It tasted good!
Fortunately for me, I had my three-month check up scheduled around the same time and described my pains to Dr. Maples. I told him it was a feeling like cramps or indigestion. Dr. Maples thought maybe I should try something over-the-counter for gas or heartburn, which I did for a week or so. It didn’t help and it was a pesky pain. I know my body and it didn’t feel right to me. So, I called Dr. Maples again and he suggested having an esophagogastroduodenoscopy (easy for him to say) procedure, where they stick a long tube down your throat. It has a camera on the tip of it and can see all the way through to the stomach area and beyond. There was a 2-3 mm flat, slightly pigmented area just beyond the duodenal bulb, which was biopsied; however, James R. Spivey, M.D., (who was a new liver transplant doctor) completed the procedure. He indicated that the lesion “was not highly suspicious for metastatic disease.”
So much for that indication, I received a phone call from my doctor that evening. He told me it was Melanoma. Not the strange Jamaican fruit (darn!). I hung up the phone and looked at my husband in shock. We were having drinks and listening to some great music on our back porch. We knew “it” was back, and I would be heading back to Mayo soon for more testing. But for the moment we forgot about “it,” got up and proceeded to practice our shagging. That’s a dance (for those of you that were thinking other wise). It was raining, but we couldn’t be bothered. My husband just held me and we laughed at ourselves and at the rain. Who cared?
The next week I did a PET scan, which is a scan to see where and if there was additional melanoma. Two areas showed up; one in my neck, and the other in my abdominal region. The neck area was identified as arthritis, but the abdominal area was melanoma. After talking with several specialists we knew the best course of action would be to remove the melanoma surgically. Therefore, off to the surgeon’s office we went. Dr. Jack Fulmer, M.D., was awesome. I liked him right off the bat and we scheduled my surgery for July 9, 1999. He told me he would make the incision from just underneath my bra line downward to my pelvis. No… I did not like hearing that, I already had a major scar on my back and wasn’t too happy about a new one on my tummy. Dr. Fulmer was very perceptive about my concerns and told me he would use the thinnest catgut he could find. I loved him from that moment on.
Matter of fact, I wrote him a little note that he would see before he cut me on my tummy telling him “he was my new best friend.” I also asked if he could repair my earlobe during the surgery (it was ripped a little, after years of wearing long earrings) and he laughed at me. He told me it was a very dirty surgery and that he could do it another time. Oh well!
The report came back, eight separate polypoid lesions involving approximately two feet of the mild ileum, which were resected or sewn back together. Pathology demonstrated metastatic melanoma in seven polyps. I was told I was very lucky that melanoma wasn’t found any other places. Now, five years later, I know just how lucky I was. My hospital stay was pleasant for me. I loved the attention remember?
The scar healed beautifully and I did too. I’m not sure why some people go into a panic mode when they find out they have a 98% of getting this melanoma again? For some reason I don’t. It’s not my nature I suppose. I just went along on the ride.
Treatment Options
At this point we needed to plan a course of action pertaining to further treatment for the melanoma because we KNOW that it had traveled from one place to another (metastasized) and we need to try and stop it. We reviewed several options with other physicians. The option of considering a bio-chemotherapy program was reviewed, along with many other treatment plans that where out there then. Dr. Maples talked with us and told us there were no absolute right or wrong answers in this setting and that argument for and against each of the different treatments could be made. They are all very toxic. It took one week to decide what I needed and wanted to do. I called Dr. Maples and told him that I wanted the most aggressive treatment, and that would be the bio- chemotherapy. - A program of cisplatin, Velban, DTIC, interleukin-2, and interferon alpha would be my drugs of choice. Plenty of risks and side effects, but I felt like I could do it. I would start my first bio-chemotherapy treatment on August 2.
BioChemo
I needed to prepare for the chemo. And of course losing my hair was at the top of the preparations list … so I called my friend Jan. It turned out to be one of the most hilarious days I’ve spent with her, you know how when you think you’re dying you get all emotional… of course she might have thought that this could be my last haircut…we decided to cut my hair real spiky short and to color it really blonde. It was so cool. … I’ll never forget that day. I was ready for the drugs… bring them on!!!!
I tolerated the first treatment reasonably well. I experienced nausea and vomiting during the week of treatment and for a few days after I returned from the hospital. I had a decrease in appetite for a few weeks and lost weight, which was fine as far as I was concerned. Fevers, chills and sweats were an on going problem. In between treatments I would feel almost normal again. We would go out for dinner and even dancing on the weekend before I started it all over again. This all was so much fun that I did it for 4 months. Five-to-six days in the hospital and then home for three weeks, then back in again.
I finished the fourth bio-chemo treatment in November. A course of observation was planned and I’ve been tested from head-to-toe ever since. My husband and I started a new file - my Insurance file. The bills started pouring in and we were a bit overwhelmed. When I realized the costs involved with treating Cancer, I was very worried that I would be a little more of a high maintenance wife than he had planned. But I tell him this “I’m worth every penny.” I’m sure if he knew then…what he knows now, he might have bolted in the other direction.
Why me?
Yes, melanoma has changed my way of life. I wonder, why me? Why do I sound so positive? I’m assuming that being the youngest of five children, I have a peacekeeper mentality and perhaps that is the reason. Maybe I’m meant to give hope to others. Maybe I will never know.
Throughout my 22-year battle with melanoma I have had countless thoughts about life and death. I think about how I'm living and fulfilling my days. Am I doing something important in my life? Have I done something important? What will I be remembered for? All of these questions pop into my mind frequently. They were even more prevalent while I was going through chemo-treatments and thought I wouldn't live for another month, much less over six years! So, I have had many hours to think about my life. If someone were to ask my advice for someone who has cancer, it would be simple; to live not just exist, to love, forgive and forget, to laugh and to cry, and to do all with a passion. Emotion is a wonderful healer.
Update
It's now Sept 2007 and I am having my semi annual scans and exams this week. My Dr. has ordered blood work, chest x-ray, EKG, CT of the chest, abdomen and pelvis and a bone mineral analysis. I will see him on the 18th of this month for the results. I have no reason to believe the melanoma has returned. So... at that time I can say I have NED 8 years and expect to have many more. Who knows!