Survivors

Fast froward a couple of years, I am 26 turning 27 in two weeks, a wife, and a mom to a 18 month old beautiful little girl. We we’re planning our move to Massachusetts. Everything was great. I had an appointment with my dermatologist, even though I thought I could never get skin cancer every year when I went in for my psoriasis I got a full body skin check (thank god), and there was this mole on my forearm that looked “off”. I can’t really explain what made me want this mole off, but my gut was telling me something was different about it. It was a mole that had always been there, but didn’t look right anymore. Small in size, slightly discolored, but stuck out to me.

Twenty-four hours later, while I am making dinner for my family, I get the phone call. YOU HAVE MELANOMA!!!! I couldn’t breathe, I couldn’t move, I couldn’t speak, all I could do was stare at my daughter with fear of not being here to live a full life with her. My thought, oh my god am I going to die? Remember, the only reference I had to melanoma was my mom’s friend dying from it. I wanted to yell and curse at my doctor, tell him you told me everything was going to be okay, but I didn’t and couldn’t because I already knew it my gut that it was something, I knew all along. My results read that I had stage 1 melanoma. On March 17th 2010, I went in for my WLE. All the margins were clear. Every time I say my Stage to someone or think of what stage I am, the only thing that I can think is; if I didn’t push, if I didn’t insist on getting this mole removed what stage would I be right now, would I even be here?

On March 19, 1986, I was diagnosed with malignant melanoma and given less than a year to live. The diagnosis was shocking and terrible. For weeks afterwards, I felt as if I had lost touch with my life and my surroundings. Whenever I allowed myself to feel anything, I was overwhelmed with fear and sadness.

Nevertheless, I refused to give up. Since chemotherapy wasn’t expected to prolong my life, I began exploring whatever experimental programs Western Medicine had to offer. These programs included interferon, interleukin 2, and a bone marrow transplant. Then my brother introduced me to macrobiotics. With his help, I started looking at a macrobiotic diet and lifestyle.

I knew nothing about macrobiotics prior to my consultation with a senior counselor, but it seemed promising. I started a healing diet in May1986 and watched the quality of my blood change dramatically in six weeks! I continued on a strict diet for two years after that and my cancer went into remission.

I would never wish my experience on anyone else. For me it has been a huge eye-opener and maybe even a blessing in disguise. Fortunately I was able to catch my cancer soon enough where it had not spread to my lymph nodes or anywhere else. I was also very fortunate in having a doctor that truly cared. Dr. Redmond went out of his way to make sure I understood what was going on and has never hesitated to remove any spot that bothers me at all. He was also the one that put together the bill we tried to pass last year. For me, knowing I had a doctor that was so passionate about fighting this disease gave me the peace of mind that I was in very good hands.

Currently I am attending school for nursing and working at a hospital as a Nursing Assistant. I see critical cancer patients quite often, and every time I see them I can’t help but think: why aren’t we preventing these cancer’s that could so easily be prevented? I try to constantly remind myself of how fortunate I have been. Although the Melanoma is gone now, it has changed my life forever. Everyday I check for new spots, and everyday I worry that it will come back.

Senior year of high school is supposed to be fun and exciting as you start to explore colleges and plan out your future. That excitement soon turned into fear when an innocent trip to the dermatologist turned into my family’s worst nightmare, hearing a word we had hoped we would never hear again “melanoma”.

Luckily, my melanoma was found extremely early. I had a surgical procedure called a WLE and learned that my margins were clear.  I knew I was in good hands since I was at the same hospital my Nana was treated at years ago. Melanoma is the fastest growing and spreading type of skin cancer and I knew if I had waited to get that mole removed, I would be dealing with a different situation down the road. I learned that I caught mine at its earliest and most treatable form.  The melanoma cells are on the outer layer of the skin and had not yet spread.  This is why early detection of melanoma is so important.

Looking back now, I wish I had never sat in the sun for hours and hours without sun block on.  Even though I am lucky that my melanoma was caught at an early stage, I know I will I now constantly carry sunscreen around with me as it is now a part of my everyday routine no matter what the weather is.

Many stage 4 melanoma patients are seeing all their tumors disappear in a new treatment being pioneered at the U.S. National Institutes of Health in Bethesda, Maryland — called adoptive cell transfer (ACT).  It’s a huge step forward for us melanoma survivors who previously had so few options that could lead to anything near a “cure”.

Second: this ACT treatment is showing better results than any other melanoma therapy out there (except for surgery).  Response rates are near 70%.  NIH is seeing total remissions in at least 25% of the patients.  So, the research is still attempting to answer why it works for many patients, but not all patients.

Third, since it’s still experimental, most insurance plans do not cover it entirely.  TIL is being done currently in only three places on Earth: NIH in Maryland, MD Anderson Cancer Center in Houston, Texas, and a hospital in Israel.

Fourth, for the time being, patients with brain mets cannot be candidates for ACT/TIL (unless their mets are so small). The chemo that takes down your immune system also temporarily damages your platelets (clotting factor) subjecting the brain met patients to potential strokes.  However, I met two NIH patients whose melanoma brain mets disappeared after the TIL treatment.  Those beautiful TIL cells do get through the blood/brain barrier!