Wednesday, July 7, 2010

Sharing her Sister's Story

  Last August a lady named Jenifer from Orange County, California, whom I never met emailed me. She asked me to share the story of her sister, Alison, who succumbed to malignant melanoma - deadliest form of skin cancer. Knowing that completing another edition of my book has been postponed to a TBD date, I decided to archive her email for the future edition.

 Yet, today, after a girl at work asked me to take a look at a mole and determine if she needed to see a dermatologist, I suddenly remembered this email about Alison. Then, I remembered how my friend, Tiffany's husband, who is featured in my book as a two-time skin cancer survivor lost his third and final battle with the disease one year ago.

 It is important to remember that while skin cancer is highly preventable, it does claim lives. Therefore, it is vitally important that we take the proper precautions - and not take for granted the fact that is largely preventable; rather, remember that it's only "preventable" if we protect ourselves. Do not take for granted the importance of proper, year-round sunscreen use, performing self skin exams every month and visiting your dermatologist every year - and especially avoiding tanning beds. There is absolutely no such thing as a safe tan from a tanning bed. Period. Claims that tanning beds are good sources of Vitamin D or catalysts for combating depression are categorically untrue. Feel free to read previous blog posts about all the aforementioned topics, and definitely search the American Academy of Dermatology for official medical information about skin cancer prevention.

 Again, the only way we can stem the tide of this growing epidemic is both through proactive prevention and educating others - especially youth. There is really no reason that someone in the United States should die from melanoma - the deadliest form of skin cancer - every hour, if we are wiser about UV safe/skin health behaviors.

 Perhaps, sharing Jenifer's sister's story will inspire you to be a personal "skin cancer crusader" both in your life and in the lives of those you know and love:

[Note: The following is quoted verbatim as shared in a direct personal email dated 8/4/09, and is printed with permission from the sender.]

"Danielle, 

This is a story about my sister in her own words. Her life was filled with lots of humor and tons of love to give. We will always remember her needs for candy…and lot of it, her love for all things Vanilla and White…..but most of all we will love celebrating HER! She has so much fight and so much ability and so much to share. Alison has fought her fight and is about to go peacefully! Please read and enjoy her story and pass long the news. Thank you! Jenifer.

 I grew up in Orange County. A southern Californian fair- skinned blue eyed blonde, who spent countless hours and days bathing in the warm sun, desiring for that golden tan skin. I spent many summer afternoons lounging at the beach or the pool with my girlfriends, when I wasn't coaching swimming lessons or lifeguarding at the local college pool. I was the head coach for an Irvine swim league and took them from 20th place to 10th. I was living the life as a young adult. I had no worries. I had no fears. I just wanted to be pretty, and of course, tan.

I still remember my father scorning "You'd better put on sun screen", before I would leave the house every morning. I always looked at him as if he was crazy. I swore he was a complete dork! Didn't he understand? I needed to be tan. I wasn't going to be tan with sunscreen.

Years would pass. I graduated from high school at Capo Valley. I kept sun bathing. I continued teaching private swim lessons-1 never wore a hat. I never wore sunscreen like my dad had warned so many times. I always would burn, then burn again, eventually building up a base tan. After the first month I would be able to tan my skin. This process took place every Summer.

I was accepted to Otis Design School in Los Angeles. I wanted to be a fashion designer. I wanted my own clothing line. I received my AA degree from a local community college, Orange Coast and then enrolled at Otis. On summer days, I tanned in my backyard or at the pool.

In 1996,1 had a beautiful baby girl and named her Madison Alexis. She became my everything. I was a single mom and it was just the two of us. I taught her how to swim and we spent many Summer days lounging around the pool or at the beach. Of course I was still sun bathing-1 loved the sun. Madison just loved being outdoors and loved swimming.

One Autumn day, I woke up and suddenly realized I had a mole on the inside of my left calf. Odd, I thought. I have a lot of moles on my body, so I didn't think anything of it. I made an appointment with my family physician to have him look at the mole. I trusted him. He knew me well- he had known my history and could give me advice on what to do. An hour later, the appointment ended. He told me it was just a mole and wasn't anything I needed to worry about. He suggested I have it burnt off, if it was really bothering me. He definitely did not seem concerned. He was in a hurry and left the room. I left the room with a sigh of relief- it was nothing!

Months would pass, which somehow turned into a year. The mole was still there, but this time, it had changed color and size and shape. I swore I thought I just kept cutting it while I was shaving. I thought it had just formed a scab. I would remind myself it was nothing. The doctor even said so. I kept covering it with band-aids.....until one day is started bleeding.

I dropped off my little one at preschool early one day, kissed her goodbye, and drove to the emergency room at Hoag Hospital. I didn't want to take Madison with me, I knew she would be scared. It was 6 am. Now I was scared. I checked myself in and was seen right away by a doctor. He observed the mole and had a puzzled look on his face. The look remained on his face for about 10-15 minutes, until he excused himself from the room. As he returned, with 10 medical books in hand, the doctor and 4 of his fellow doctors, were quickly thumbing through the books anxiously hoping to give me some answers. I heard them say over and over, "No, it sure doesn't look like cancer."

I was feeling relieved. They told me they didn't know for sure, but that they recommend I see a dermatologist. It definitely didn't look cancerous. I was confused. I had never seen a dermatologist before. I always had good skin.

They handed me a piece of paper with the number of a dermatologist near my house, and told me to make an appointment as soon as possible. I left immediately. I swore I was fine.
As soon as the dermatologist's office opened, I called to make an appointment. Luckily, they had an opening the very next Monday. I was in. I was positive everything was going to be fine. It wasn't cancer. It didn't look like cancer. I trusted those doctors, especially my family doctor who I have known since the age of 5.  I was going to be fine.

Madison and I drove to my appointment. We checked in. I was called in immediately. Madison sat behind me and I plopped down on the doctor's chair. The doctor entered the room and within 30 seconds of viewing the mole, he urgently asked me how long I had had it for. I explained to him that I was a super busy, single mom, was going to school, working full time and raising a daughter, etc....."I don't know", I said. "A month. A few months. A year." I had lost track of time. He was not happy. He looked as if he was going to jump out of his skin and strangle me. He said nothing. He quickly disappeared. Fifteen minutes later he returns with 2 nurses, 2 trays covered with doctor tools and supplies, and some kind of machine. I was confused. I was scared. Madison began to cry. The doctor told me to lay back. He warned me not to look up. It all happened so fast. My body became numb.
Madison's cries turned into screams and she began to yell out, "Why is there so much blood everywhere?" and "What are you doing to my mommy?". When the procedure was over and after I calmed my little one down, the doctor again warned me to not look up. I did. In front of me, floating in a little clear tube, was a 3" substance which looked like a leech. I asked the doctor where he found that leech, and he told me, "It's not a leech. We got that from you leg." I wanted to vomit. My daughter looked into my eyes and continued to cry. I was still numb. I was so confused.

The doctor said he would call with lab results within the next three to five days. He was sending the leech out for testing. I wanted to cry. A million things rushed through my head. Was it cancer? Was I going to die? Will I be here for Madison? Will I ever be able to have my own clothing line?

4 days later the phone rang. I still remember how eerie the phone sounded when it rang. It was the doctor's office. They left a message. I needed to return for the results from the biopsy. I couldn't breathe. It was going to be bad news. I just knew it. They would have said something if it was good news.

I returned to the dermatologist's office to discover that I had stage III melanoma. The doctor was afraid it had spread to my lymph nodes since the mole was so big and had grown so deep into my skin tissue. He couldn't believe what I had gone through. They wanted to rush me immediately to John Wayne Cancer Institute to perform a wide excision biopsy, including the blue node biopsy- to see if the tumor had spread. I would probably need a skin graph to cover the enormous wound, which would include the aid of a plastic surgeon. They also discussed chemotherapy, radiation and a multiple of treatments. At that moment, I stopped hearing any words. I wanted to just hold Madison.

I followed the advice of the dermatologist, and after my urgent meetings with the team at John Wayne Cancer Institute, I agreed to have the surgeries performed.

On April 10, 2001, at the age of 27, I was diagnosed with Stage III melanoma. The disease had traveled to my lymph nodes and I had to have seven removed. I had a wide excision biopsy, which meant that they had to remove an inch and a half clearance all around the original 3mm site. I also needed a skin graph- the site was just too big and way too deep to heal by itself. They were afraid the tumor had traveled to my brain or lungs. Numerous tests would reveal- the tumor did not travel outside the lymph nodes. They also told me my survival rate was three to five years.

The wound on my leg was so deep and so big, that a nurse had to come to my house two times a day to bandage and re bandage the wound. I was unable to walk for 30 days. It was hard to take care of my daughter. I was hurting constantly and was struck with fatigue on a daily basis.

After the wound healed, I was referred to an oncologist, near my house, and underwent 30 days of interferon treatment. It was brutal. I had extreme flu symptoms on a daily basis, and couldn't get out of bed for a month. My family came in to help me with Madison. I wouldn't leave the house. My hair fell out. It was a horrible time. They had to take me off interferon after 30 days, because my body could not longer handle it and my white blood cell count kept drastically dropping. My doctor explained that I had received 80% of the treatment and it wasn't necessary to continue. It took four months to recover.

Months went by, and I started getting medical bills bounced back to me. My Health Net Insurance had denied my surgeries, my treatments, my hospital stays, my scans and even the hospice nurses. They had denied almost $200,000.00 in medical bills. I was in a state of panic and confusion. I was a single mom, unable to work. How was I going to pay for all of these bills?

Health Net claimed I had a pre-existing condition. When I filled out my paperwork at registration, they said I didn't check off the box that read: mole.

I was no longer allowed to get Pet Scans, MRI's, X-rays, etc., without having to pay cash. I needed to be scanned every 3 months. I couldn't afford that. My oncologist agreed to see me for regular check ups with no charge. I had to pay for everything else. That was impossible. I still owed $200,000.00 in medical bills.

I tried to get insurance from 9 different health insurance companies, only to receive letters in the mail stating that I was denied. I had no health insurance and lived every single day in fear that my melanoma would re-appear. I became obsessed with Madison being exposed to the sun. I stayed out completely. We put on sun screen every moment we walked outside the door. I wanted her safe. I just wanted to live.

After 4 years, I stopped getting regular check ups and started living my life as a cancer survivor. Again, I had no health insurance, could not afford to get scanned and my oncologist would no longer see me. I owed him close to $50,000.00 in past due invoices. I owed the Imaging Center close to $17,000.00. They would only take me in as a cash patient.

My hair slowly grew back. The symptoms from the interferon finally subsided. My wound healed (there is still a gigantic hole there). My daughter was growing bigger. Hooray-I was still a mommy. I started my own clothing line and lived each day as if I was normal. Of course I was tired, but I kept on going. Of course there were days when I wanted to lay in bed each day, but I was determined to fight this and to fulfill my dreams.

Everything was fine until March, 2008.1 was at my local gym working out, when I suddenly felt dizzy and started seeing little white lights spark in front of me. I thought that I was just exhausted from pushing so hard and because I hadn't eaten anything all morning. Besides I hadn't been inside a gym in over a year. I got down from the Stairmaster and walked into the bathroom to wash my hands. I was looking into the mirror, when I noticed the little white lights again. I felt sleepy, so I walked into the locker room and laid down on the bench. 

I closed my eyes....

I awoke in the emergency room at Harbor UCLA hospital, strapped down on a gurney. I was screaming in a state of panic. I had no idea where I was. I didn't know what year I was in. I didn't remember where I lived, or what my name was. I was confused. After a series of tests, and six hours later, they released me from the hospital and told me to make an appointment with a PCP. They told me they couldn't find anything in my test results. They failed to let me know they were preliminary.

Two days passed, and I was on my way to work. I pulled out of my driveway and onto the freeway, when I suddenly felt funny. I couldn't explain the feeling. I just knew something wasn't right. I turned my car around and checked myself back into the emergency room. Later that afternoon, while I was waiting in the hospital, my boyfriend handed me a piece of paper from the hospital, letting me know that I should come back to the hospital. They had found some suspicious information from the MRI and Pet Scan. I was already there, waiting to be admitted. Nine hours went by. I was still waiting.

I was admitted to the hospital and results would show that I had two tumors in my brain and a clump of tumors in my lungs. My melanoma had returned! They also discovered I had a fungal infection that I needed to fight off first. I stayed in the hospital for nine days. They diagnosed me with Stage IV melanoma and told me the prognosis was not good.

Not good at all.

I underwent four weeks of radiation, followed by the first treatment of chemotherapy, on the advice of my oncologist at Harbor UCLA. The infectious disease specialists prescribed me an oral medication (Noxafil) for my fungal infection. I was also prescribed many medications, followed by medications for my side effects from the primary medications. I was in pain. My hair fell out completely. I was always tired. I could not stop coughing and spitting up. I had an upset stomach every morning. But I kept working. I wasn't about to let this disease eat me. I was determined to fight.

My daughter decided to move in with her father, just recently. She said it was too painful to see me and she didn't feel comfortable sleeping next to me. She was afraid she would catch my melanoma. Hearing this was more painful than any tumor or any treatment. I was also losing my little baby to this terrible disease.
With all of these unanswered questions, and several doctors prescribing many medications in a sea of uncertainty, I decided to get a second opinion. I made the decision to call my surgeon and oncologist who saw me in 2001, hoping they would be able to give me a more definitive short term plan, a long term plan, and guide me more effectively since they were melanoma specialists. I knew I didn't have insurance but was hoping they would see me and help me. I was feeling like a number at Harbor UCLA and was traveling along a road of trial and error. I had had enough. This was my life we were talking about. I wanted my daughter back. I wanted to keep my company.


It's May 2008. I have been seeing my two melanoma doctors, Dr. Leland Foshag (surgeon) and Dr. Stephen O'Day (Chief of Research and Director of Melanoma programs) for 1 month now. I had all of my medical records, charts and scans transferred into their care. I qualified for a clinical trial and am currently into my 12 week program. They call the trial 006. Bristol- Myers, the company who sponsors the trial, has agreed to pay for most of the costs. I will still have to pay for doctor visits (which are $440 each), blood tests ($400-600 each), and trial nurse check ups ($250 each). It is a lot of money. But this is my life we are talking about and somehow the financial thing will have to work itself out.

I am still on seizure medication and am not able to drive for six more months. The DMV was kind enough to send me a letter which stated my driving privileges have been suspended until further notice. I go in for checkups with my clinical trial nurse weekly and my infusions continue every three months. I still work every single day. I strongly believe it is all in your mind. I can lie in bed and let this disease eat me or I can get up, get dressed, look in the mirror and thank God for the two things that drive me."



Thank you, Jenifer, for sharing your sister's story - and for allowing me to share it via this Blog. 

 Alison Bane, the founder of the Olive Jane Company, was like many other young women. She loved life, her daughter, and the outdoors. She had so much going for her; so much to live for, and malignant melanoma cut her life short thus orphaning a little girl. Speaking from experience, losing a mother to cancer forever "scars" a child. Melanoma is the number one killer of women in their 20s and 30s. Please do all you can to protect yourself, and spread the word about proper prevention to others. I have shared other, similar stories about young women who've battled melanoma. Just as breast cancer merits our immediate attention, so does melanoma skin cancer.

 To close this entry, here is a poem Alison wrote about her battle with melanoma.


Fight
I will continue to fight so my daughter will come home.
I will continue to fight so my company will grow.
I will continue to fight so my hair will grow back.
I will continue to fight so I can drive again.
I will continue to fight so I can stop coughing for one day.
I will continue to fight until I beat this disease.

- Alison Bane. 

5 comments:

Judith said...

This disease is very painful so it must be controlled properly and to achieve this goal we must be informed and attend the medical specialist to recommend a medicine we do not eat properly and medicines out of control because we can cause problems for the body.

Sun Advocate said...

It's just great that you inform your visitors about sun protection. I could not imagine being in the sun without some of form of sun protection.


I was not careful in the sun when I was a kid. It's never too late, but sun protection starts at infancy. Nowadays, hopefully the parents have sufficient knowledge and know what to do.


Thank you again.

Have a Sun Safe Day!

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