Saturday, January 7, 2012

I Wish it was ”Just Skin Cancer” (A continuation of Jessica’s story “I Won’t Get Cancer, I’m too Young”)

I Wish it was ”Just Skin Cancer”

(A continuation of Jessica’s story “I Won’t Get Cancer, I’m too Young”)

Written on December 29, 2011

By: Jessica (Vega) Rogowicz

My story last left off a few days before my surgery for my second diagnosis of melanoma. I am a middle school math teacher and am lucky enough to have the summer months off work. My second diagnosis was on July 26, 2011. My summer officially ended on that day. I didn’t want beautiful, sunny days anymore. I wanted all gloomy and rainy days. Anytime I was outside, I felt like I needed to get indoors as quickly as possible. I felt like a prisoner. On rainy days, I felt free. I felt like I could walk outside and not wonder how badly I was damaging my skin. Melanoma, once again, put me in a constant state of paranoia.

Unfortunately, my surgery was not scheduled until August 24, 2011. This was supposed to be my first day back at work. I had almost a month to sit around and wonder where this was going to take me and if this would be more severe than the first diagnosis. The uncertainty and waiting was the worst part. I love having my summers off work and having the time to relax and enjoy friends and family. After July 26th, I just wanted it to be over as quickly as possible.

The day before surgery I had to go the hospital for an MRI to find where the sentinel lymph node was located. Basically, a tiny amount of a tracer, either a radioactive tracer (radioisotope) or a blue dye, is injected into the tumor site. The lymph nodes were marked with a permanent marker and removed the next day during my surgery. The sentinel lymph nodes are the first place that the cancer would have spread to. If cancer was found in the sentinel nodes, then I would need more treatment than just this surgery.

My parents and husband came to the surgery with me. I felt so guilty for putting three people I love dearly through so much stress. I had a deep area removed from the back of my right leg where the melanoma was found. I had two lymph nodes removed from my groin. They removed the sentinel lymph node where the cancer would have first spread. Depending on the outcome, that would determine if I would need further surgery, chemotherapy, and/or radiation. Luckily, the hours following my surgery, I wasn’t in much pain. I was instructed to “take it easy” and stay off my feet as much as possible. The area where the lymph nodes were removed was the sorest. If it didn’t heal properly, I would have needed a drain tube inserted to avoid infection.

I remember pulling into my driveway after arriving home from the hospital and seeing two bouquets of flowers in front of my driveway. It was yet another reminder of the love and support that I have from my family and friends. I received so many calls, cards, and visits from friends and family who were supporting me all the way.

In the days following my surgery, I was in a lot of pain. I had difficulty sleeping, standing, laying, and sitting. I could not get comfortable. The physical pain was a constant reminder of the cancer. The sentinel nodes were sent for a biopsy and I wouldn’t have the results for at least a week. I cried every single day. I knew the chances were unlikely that it spread because it was stage 1A, but I didn’t want to necessarily count on it and take my health for granted anymore than I already have in my life.

A week later, I was back to work. I was supposed to take at least a full week off work, but I was stubborn and didn’t want to start the school year off by missing so many days. I was very sore at the end of each day and basically slept the rest of the evening after work. I slept because of the physical pain, but also because I was extremely depressed. Never in a million years did I think I could get cancer in my 20s, let along twice in my 20s.

Luckily, I received the call from Dr. Edington that the cancer hadn’t spread and it was caught early. Even though I got the good news, I still cried every day. It was such a traumatizing experience. I think the physical pain I was in after the good news was just a constant reminder that I had cancer…twice. It wasn’t until a month or so after surgery that I started feeling like my old self again and stopped crying everyday. My husband has been there for me through everything and has supported me the whole way, but he was so lost as to what to do when I would cry all the time. He didn’t understand how I could get good news and be cured, yet still cry. Without going through cancer treatment, it’s very difficult to understand. It’s hard for me to put into words why I was crying. I guess because I was beginning to realize that this is going to be a lifelong battle. For the four years in between my first and second diagnosis, I was careful. I wore sunscreen, haven’t been sunburned, etc., but the cancer still returned.

So where could I put all this negative energy? I have been through so much since my first diagnosis and needed an outlet for everything I had gone through. As I stated in “I Won’t Get Cancer, I’m Too Young,” I decided to Direct Miles Against Melanoma 5k in Pittsburgh, PA, where I live. The 5k is a lot of work, but it was my way of turning a negative experience into something positive and meaningful.

I had the honor of meeting Amalyn Martin, the founder of Miles Against Melanoma. She invited me to be part of a public service announcement that was filming for melanoma awareness. My husband and I went to St. Louis for a long weekend trip. I had a great time filming the public service announcement and spending the weekend with Amalyn. We saw the St. Louis Arch and did some sightseeing. We also had the chance to meet and have dinner with Stephanie Leibengood, Mrs. Kansas 2010. Overall, it was such an amazing experience and I have made lifelong friends with those I met in St. Louis, MO. Amalyn Martin has been one of my biggest supporters from hundreds of miles away. The whole experience with getting involved with Miles Against Melanoma 5k PA has completely changed my life for the better.

Facebook seems to get a lot of negative publicity, but it has helped me to connect with so many who have personally been affected by melanoma. Shortly after returning from St. Louis, Rachael Burbank contacted me through Facebook. Rachael is the best friend of Glenna Kohl of Cape Cod, Massachusetts. Glenna was a beautiful girl who lost her life to melanoma in 2008 at the age of 26. Her story was featured in Cosmopolitan in 2009. The article was titled, “A Death by Suntan at Age 26.” I remember reading this article in the magazine. I always felt like I was the only one who was going through skin cancer at a young age. I saved the magazine and that story really touched my heart. Rachael contacted me to ask if I would be interested in being a keynote speaker as a melanoma survivor at the 3rd Annual Angel’s Masquerade Ball. The ball is a fundraiser for Glenna’s Fund. The proceeds are used to purchase umbrellas for the lifeguard chairs on the beach where Glenna was a lifeguard for many years. Fortunately, my husband and I were able to attend the ball. It was a complete honor to be asked to attend and speak at the event. During the long weekend, we were able to fit in some sightseeing in Boston, Plymouth, and Salem as well. My raffle ticket was drawn to win a print of a painting of Glenna walking on the beach. I now have the painting framed and hanging in my livingroom and I will always treasure it. I like to think that was Glenna’s way of telling us that she was there with us and she knew how much it meant to me to be at that event honoring her life. My speech went well and I hope it really encouraged the 250+ people who were in attendance to realize that it’s “not just skin cancer.” While I was giving my speech, you could hear a pin drop. I hope that was a good sign. Maybe I was too graphic or it was too depressing, but my goal was to help spread awareness, so call me Debbie Downer if need be.

The weekend after I returned from Massachusetts, I was celebrating my 29th birthday. I found out on my birthday on November 2, 2011, that my husband I were expecting our first child! We wanted a baby for so long and tried for a long time to have one. God has a mysterious way of working. I needed to take care of my health issues before it was time to be a mommy. Excited does not even begin to describe how we felt. I am just finishing up my first trimester. I try to not live in fear of dying and I don’t like to constantly focus on cancer. I would be lying if I said that from time to time, I am scared that I won’t live to see my children grow up. I hope I never have to battle melanoma again, but if I do, I will fight to stay alive and will do all that I can do to prevent any further sun damage to my skin. It will be an extremely busy summer with planning the 5k and being due three weeks later with our first baby, but it will be a summer full of wonderful emotions.

I went to another follow-up appointment with my oncologist last week. There are three spots that he wants to monitor. He marked them so that my husband can keep an eye on them, since two of them are on my back. I was relieved that nothing had to be removed, but I was reminded yet again that it’s not like having a broken leg in which your doctor appointments will eventually end. I will see an oncologist and a dermatologist every 3 to 4 months for the rest of my life. This will be a lifelong battle. But I’m alive, so I can’t complain.

And that brings to me to 2012. The planning of MAM5kPA is going great. I get a little overwhelmed at times, but it is all worth it. Our long version of the public service announcement is complete. I have watched it several times and it brings tears to my eyes each time. I know that June 16, 2012, the day of the 5k race, will be an extremely emotional day for me. It definitely won’t stop there. I will continue to do my part to raise awareness and keep Miles Against Melanoma in the Pittsburgh area. Hopefully it will grow more and more each year.

I want people to know that it’s not “just skin cancer.” If you go to any search engine and type in “melanoma,” the description usually starts off with, “Melanoma is the most deadly type of skin cancer.” By telling a skin cancer patient, “It’s just skin cancer,” you are basically telling them that it’s nothing to worry about. There are so many people that have lost loved ones to skin cancer. Remember, cancer is cancer. I am extremely grateful that my skin cancer was caught in its early stages, but no one should ever take for granted that skin cancer can destroy your organs and overall health just as much as any other cancer. It’s a cancer that could have taken my life and have taken the lives of many.

I hate to compliment melanoma in any manner, but it has made me a better person. It has helped me mature more as an adult, value my health, and treasure my time with my family and friends. I will continue to fight for my health, teach my own children the ways to stay safe in the sun, and educate others to realize that no, it’s not just skin cancer.

Jessica (Vega) Rogowicz

Thursday, January 5, 2012

Be Thankful It's "Just" Skin Cancer

Throughout my experiences with melanoma, I have unfortunately heard the phrase, "be thankful it's just skin cancer" many times.  Hearing this from friends and even strangers made me realize that people are still so uneducated about the dangers of skin cancer.  CANCER IS CANCER.  I strongly believe that people have different reactions based on the type of cancer you are diagnosed with.  I have found that when I tell someone, "I had cancer."  They usually ask what kind.  Then when I say that I had melanoma skin cancer, they say, "Oh okay."  What, is that not a real cancer? It seems as though I would get a more concerned response if I told someone that I was recovering from strep throat.   Unfortunately, many won't believe that skin cancer is just as scary as any other type of cancer until they get a devastating call from a doctor.  I am personally doing everything I can possibly do to prevent those calls and help educate others that IT'S NOT JUST SKIN CANCER. 

If you type the word "melanoma" into any search engine, the first phrase that will pop up on most sites is, "Melanoma is the most deadly form of skin cancer."  Unfortunately, I didn't know this until I was diagnosed. 

I don't claim to be an expert on any cancer, but I have tried to educate myself and others to the best of my ability level on melanoma.  The key with melanoma and many types of cancers is early detection.  If it is not caught in the early stages, it can be fatal.  So no, I am not "thankful" that it's just skin cancer. 

Of course I am the "tanning nazi."  I don't care what people think of me, but when you mention using a tanning bed in my presence, I guarantee I will proceed to lecture you and show you my scars.  When someone mentions tanning, every once in a while, someone else would step in and say, "Don't say that around Jess, she'll yell at you!"  You got that right.  Why wouldn't I? The scars, physical and emotional pain, stress, and tears that melanoma has caused me in the past five years will be a memory that will run through my head every single day for the rest of my life.  My only way of dealing with the negativity is to help to educate others.  Should I take personal offense when close friends go tanning despite seeing all that I have gone through? I have shared these thoughts with Chelsea Price, a fellow melanoma survivor, and I still struggle with these feelings all the time.   Was what I went through not enough to make you stop damaging your skin? Are my scars fake? Am I that good of an actress that my daily tears were not genuine for eight weeks as I was going through my second battle with melanoma?

Please educate yourselves and realize that no, it's not just skin cancer.  Yes, I am thankful that my cancer was caught in the early stages, but I will never discredit the harm that skin cancer can do to someone's health.  When talking with someone who has battled cancer, please be aware of how you approach the situation because it is ABSOLUTELY TRAUMATIZING to be diagnosed with cancer, even if it's "just" skin cancer. 

Our public service announcement was completed last night.  Each day, I read posts on Facebook from fellow melanoma warriors and how much they are experiencing because of this ugly disease.  After reflecting how many lives are affected each day by melanoma, these thoughts just came to mind and probably caused me a little trouble sleeping.  I hate you, melanoma. 

Here is a link to the Miles Against Melanoma PSA.  Those featured in the film has each been personally effected by melanoma.  My name is misspelled, but it will be fixed shortly.  Each of us is affiliated with Miles Against Melanoma in some manner.  Stephanie directs the one in Kansas City, Amalyn directs the one in St. Louis, and I direct the one in Pittsburgh, PA.

Sunday, September 4, 2011

I Won't Get Cancer, I'm Too Young

I wrote this story on August 22, 2011.  I have had my surgery since then.  In my next blog, I will continue this story...

I Won’t Get Cancer, I’m Too Young

By: Jessica (Vega) Rogowicz

            I am 28 years old and have recently been diagnosed with melanoma skin cancer for the second time in my life.  Here is my story…

            Since I was 6 years old, my family vacationed at Ocean City, MD.  I would wear sunscreen, but had countless sunburns in my life.  In high school, I would go to the tanning salon occasionally, mostly for prom and other dances.  During college, I really liked the way I looked when I was tan, so I started tanning on a regular basis.  I went twice a week for about two years.  I went to a salon that offered a variety of beds.   There were beds with 42, 54, and 60 bulbs.  I wanted the best tan, so on top of my monthly package, I paid extra for the beds with 60 bulbs. 

            My dad had basal cell carcinoma on his nose.  He had it removed, and he is fine. My parents warned me about the dangers of tanning beds.  I cared more about what I looked like though.  I decided that I would continue tanning and would stop “when I got to the risky age of getting cancer…like in my 50s.”   I could continue going tanning and wouldn’t damage my skin for many years, or so I thought.  I figured that even if I got skin cancer, it would be similar to my dad’s basal cell—I would get it removed and then I would be fine.   I had no clue that skin cancer could spread and that it can be deadly. 

            Over the years, I developed freckles and many moles.  During the summer of 2007, I decided that I would get a mole on my knee removed.  It was raised and sometimes I would knick it when shaving.  I happened to notice a darker mole on my back that seemed new and awfully dark in comparison with my other moles.  I’m a teacher and since I have off during the summer, I decided it couldn’t hurt to go get it removed while I had the extra time.  No big deal. 

            I had both moles removed by my primary care physician, Dr. Fackovec.  I remember him telling me that he was going to send me to a plastic surgeon, Dr. Stofman, to take a deeper incision.  I wasn’t worried, because even if it was skin cancer, skin cancer is a “pretend cancer” that people don’t die from.  I remember receiving a call from Dr. Stofman a few weeks later and him telling me just to keep an eye on those areas and make sure the moles don’t grow back or the scarring doesn’t change.  Once again, it was no big deal.  I hate to admit it, but I still went tanning.  Why stop? After all, I didn’t have cancer.  I thought all of the testing was over…just had some moles removed, as I have in the past, and have always been fine.  October 31, 2007 changed my life forever. 

            I vividly remember getting the call that the mole on my back was melanoma.  It was Halloween Day 2007, three days shy of my 25th birthday.  I was in my classroom at the end of the day and I noticed that I had a voicemail on my cell phone from my plastic surgeon’s nurse.  I thought, “That’s strange.  Wonder why the doctor needs to talk to me, all of the tests came back fine.”  When I called Dr. Stofman I remember him telling me that I have melanoma.  He went on to say that he was referring me to Dr. Edington who works through Magee Women’s Hospital.  I remember responding to everything he said with, “Okay.”  I couldn’t ask or say anything else because if I did, I would start crying.  I got off the phone and started hysterically crying.  I called my husband, who was my boyfriend at the time, and told him that I had melanoma.  For some reason, I didn’t fear that I had cancer and still didn’t think that someone could die from skin cancer, but at the same time, it was horrifying getting that call.  In my head, “Oncologists are cancer doctors.  Why do I have to see one of those?  Why can’t my plastic surgeon just remove the cancer?” 

            I was diagnosed on October 31, 2007.  My surgery was scheduled for November 28, 2007.  My cancer was still in the early stages and it was slow-growing.  I understood that they had to treat patients with more severe cases first.  The month of waiting was torturous.  For the first few weeks after my diagnosis, for whatever reason, I didn’t do any research online.  Looking back, my life was a fog.  Two weeks after being diagnosed, my grandmother passed away.  My family and I were dealing with me having cancer and now the loss of my grandmother.  I still had no idea that melanoma can be deadly.  My family, boyfriend, and friends knew it could be fatal, but they wanted to keep my spirits up.  I remember my sister crying to me on the phone asking, “You’re not going to die are you?”  I’m the big sister, so I had to be strong and pretend like I was fearless. 

            I had a lymph node removed and had a deeper and wider incision taken out of my back.  I have a scar that is about 6 inches long and about ½ inch wide.  The mole that was removed was no bigger than a pencil eraser.  I had a tube in my back to drain fluids to avoid infection. I didn’t leave the house for three days.  My husband asked if I wanted to go to a basketball game.  That was the first time I left the house since surgery.  I still had my drain tube in and was still a little sore.  Before the basketball game, he took me to the elementary school where we had first met and he proposed to me.  

Just to recap, I was diagnosed on October 31st, my grandmother passed away on November 14th, had surgery on November 28th, and got engaged December 1st.  My life was a roller coaster, but luckily things were looking up.  I was newly engaged and at my follow-up appointment I found out that the lymph node showed no signs of cancer.  It was all gone!

I had instructions to stay out of the sun and wear sunscreen everyday, even in the winter.  If I did vacation at the beach, I had to stay under an umbrella.  I also had to be checked by my oncologist every three months. 

Since then, I stayed under the umbrellas at the beach.  But I vacationed in Las Vegas, Florida, Ocean City, Mexico, and other sunny places.  I like to think that I kept in mind that I had cancer and tried to be careful, but I also didn’t live in a bubble.  I have to admit, if I was just walking my dogs for a few minutes or was running outside for maybe a half hour, I wouldn’t wear sunscreen.

During the summer of 2011, I was at the beach for a few days while my family was vacationing there.  I noticed a dark, asymmetrical mole on the back of my right leg.  I had a bad feeling about it, but I have also had bad feelings about moles in the past few years that turned out to be nothing.  I already had a check-up scheduled so I would ask my oncologist about it. 

Dr. Edington thought it looked “weird enough” to remove.  He sent it for testing and two weeks later, on July 26, 2011, I got the call that it was melanoma again.  I started hysterically crying to his nurse, Rhea.  I remember saying, “This is my second time with melanoma. I’m only 28.  I’m too young to be going through this!” 

A few days before my second diagnosis, I decided to take on the task of organizing the 1st Miles Against Melanoma 5k in Pennsylvania ( Amalyn Martin is the founder of Miles Against Melanoma, a non-profit organization to raise melanoma awareness.  The money raised from the race is donated to melanoma research.  She is from Missouri, which is where the first Miles Against Melanoma 5k was held.  She is an inspiration to us all.  With her help and assistance, many of us are doing our part to spread the word about melanoma awareness in cities across the United States.  I’m amazed at the amount of support that I have received from family, friends, and complete strangers. 

My surgery is coming up in a few days.  They will perform the same procedure that they did in 2007.  This melanoma is in stage 1A.  My last melanoma was also in stage 1.  I know they caught it early and the chances that it has spread are unlikely at this time, but I know that this will be a lifelong battle.  Wearing sunscreen will be a part of my daily life.  It took being diagnosed with melanoma for me to stop tanning.  I still enjoy outdoor activities and sometimes I can’t avoid the sun, but when I am in the sun, I’ll do my best to protect myself.  Unfortunately, I still have a few friends who use tanning salons.  It annoys me because they have no idea how scary it is to get the call that you have cancer. 

I didn’t write this story to get sympathy or have people feel bad for me.  I hate to complain about having cancer because I know that in comparison to what others are going through, I’m very lucky.  I feel healthy, never had to go through chemotherapy or radiation (knock on wood), have a great support system, and can basically live my day-to-day life as a healthy person.  I want to live to grow old with my husband and family.  I want to be here to say to my great-great-grandchildren, “When I was your age…”  I don’t want my parents to lose a child.  I want to be going to the mall and out to lunch with my sister when I’m 80 years old.  I’m hoping that I haven’t damaged my skin to the point that it cuts my life short. 

            No matter how much money you have or how much you are loved, anyone can get melanoma.  Cancer can’t always be cured.  You can’t just write out a check to fix this problem or ask your parents to bail you out of this situation.  With my story, I am hoping to spread melanoma awareness and want others to learn from my careless mistakes. 

Feel free to contact me

~Jessica (Vega) Rogowicz


 spray tan (July 2011 in Ocean City, MD)

My natural skintone (December 2010 in NYC)

A mix of the Carribbean Sun and tanning salon (August 2006 in Punta Cana)

Thank you, Chelsea

Chelsea, a 24 year old melanoma survivor, has inspired me to start blogging my experience with melanoma.  I'm hoping this blog will help to educate those who think that melanoma is "just skin cancer" and serve as a way to get out what I'm feeling when I have a lot on my mind.  It's definitely scary going through two battles of cancer when you are 28 years old.  Who knows, maybe one day my own children will read my blogs and make safe decisions about sun exposure and tanning devices.  Overall, it's a success if it serves as therapy for me, and more importantly as a way to educate about melanoma awareness. 

Hopefully, I will live a very long and healthy life.  I am in the process of taking on one of the greatest, most rewarding tasks of my life--Miles Against Melanoma 5k PA.  I'm taking my experience with melanoma and turning it into something positive by fundraising for melanoma research and spreading melanoma awareness.  If I'm alive and well, then I can do anything, even organize a 5k race. :-)