13 minute read
WOMAN WHO INSPIRES
DANCE WITH ME
When I first was diagnosed with cancer, little did I know that it would lead me to my life’s purpose. I have a cancer that’s considered to be rare but is truly just misunderstood and, sadly, misdiagnosed. It is neuroendocrine cancer also known as carcinoid or NET. My particular affliction is Recurrent Paraganglioma Syndrome. Paraganglioma and it’s kissing cousin Pheochromocytoma are slow growing but deadly. Many people receive their diagnosis on the autopsy table. This includes President Dwight David Eisenhower. We are losing beautiful people around the globe to this monster and I really want to call attention to it. The attention it deserves. The attention it needs!
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The first time I was diagnosed was when I was 21 years old. I had been misdiagnosed so often and for so long that I was at fourth stage or end stage. It was 1988 and my incredible saintlike doctor, Dr. Paul Dutcher at the U of R, wouldn’t give up. He sent my scans and reports to doctors all over the world. There were only two doctors who agreed to take me on. One in Switzerland and one in Los Angeles. I chose Dr. Brackmann of the House Ear Institute in Los Angeles. He wanted to try an experiment but hadn’t found a willing guinea pig because the process would most certainly cause death if it failed. I knew my time was at hand so I thought, no matter what, this would be a good decision. If I lived - hooray! If not, they’d learn how to help the next person with such an advanced case. So in August of 1988 I was 22 and I made medical history. The
BY MELINDA FINN
tumor had enveloped my carotid and vertebral arteries as well my jugular vein on the left side. The experiment was to see if the jugular and carotid, and vertebral if necessary, could be removed sacrificed surgically on one side. All humans have a structure in the back of our incredible heads called The Circle of Willis. The hypothesis was that if the jugular and carotid were removed from one side, The Circle of Willis would take over for the impaired side leaving the patient to live instead of succumb to the disease. The plan worked and Dr. Brackmann wrote about four times in The Journal of the American Medical Association and took the film of the surgery around the globe to teach other surgeons his technique.
I’m very proud that I made that decision. Every time I hear that somebody has had an embolization or a carotid artery or jugular vein - or both - removed, it makes me very happy indeed! That being said, all these years later, I’m hearing similar stories to mine. People are still being misdiagnosed and given the run around. This isn’t the doctors’ fault. The medical community hasn’t been educated and trained to treat this disorder. It’s left me feeling like all the suffering and pain I went through all those years ago hasn’t brought us any further. We still have people being misdiagnosed. Being treated for symptoms and not looking for the cause. And, tragically, passing away before it’s discovered. I myself am fighting my third battle with it and have undergone just about every kind of treatment or therapy available to get rid of the dread cancer. I’ve been a patient advocate and have tried to support and be there for as many people as I can. At this moment, I’m not allowed to work in a cancer center because I have cancer. I understand that policy but I dearly want to help others. That includes patients and their caregivers. Caregivers are suffering too and need help coping. Ive always given my personal phone number and email so people can have access to me if they are in need. I’ve taught journal writing workshops and facilitated groups at the Gilda’s Club of Northern Jersey. I was elected to the Wilmot Center’s PFAC, which stands for Patients and Families Advisory Council. It is my life’s mission to help others dealing with this nasty thing we call cancer. I will always make myself available to anyone who needs that help. Always.
Some time ago, I came up with what I call the 3 R’s of cancer. They are as follows:
RECOGNIZE
- Don’t deny your feelings and emotions. Own them. Acknowledge them. Don’t be intimidated by those who say that nobody should say “Why me?” because that’s ridiculous. We’re human and of course we’re going to wonder and react with emotions such as that.
RESPECT
- Respect what all those emotions are there for. They are an alert system to get you prepared for battle. And thank God were equipped with these reactions. They’re preparing us to take on a serious threat!
RELEASE
- you must find a way to release these so called negative emotions. They only become negative when they’ve out served their purpose and we keep them buried within us. We have to let them go so we have all the positive strength we need to take those challenges on. There are just as many ways to release or let go of these reactions as there are people. It doesn’t matter how you do it - meditate, scream, write in a journal, go kickboxing or running - whatever you need to do! Do not bottle it up or it will join cancer’s team and leave yours. We are trying to spread the word about this nasty demon and we need all the help we can get!
MELINDA FINN
A FRESH START
BY SAMANTHA LAPOINTE I PHOTOS BY
My father was never in the picture and I never understood why. My mom would tell me that it was because he wasn’t a good person. She shielded me from him for good reason, and I would quickly learn for myself just why.
When I was 10 years old, after my father got out of prison (for what seemed to be the 500th time), I begged my mom to let me spend my summer break at his house. She hesitantly agreed to let me go stay with him and his wife at the time, against her better judgement. I was there for about a month, and one day my stepmother and stepsister went out somewhere. It was just my father and I at home. I remember very clearly a man knocking on the door. My father let him in and I watched as they exchanged something. Drugs? Money? To this day I’m still not one hundred percent sure exactly what it was. But, after the exchange I remember my father allowing this man to take me into my father’s room and rape me.
At 10 years old my innocence was stolen from me by the hands of my father. He allowed this to happen to me. I wasn’t sure what was happening, but I knew it was wrong. I just cried. Then when my stepmom got home, I asked her to bring me back home to my mom’s house. I never told my mom what had really happened that day. I just told her that I just wanted to come home. Throughout junior high and high school, I looked for love in all the wrong places and often got hurt. School was never my strong suit. At the age of 17 I convinced my mom to let me drop out of high school. She told me that If I was going to drop out I was going to work and also get my G.E.D. I worked two full-time jobs, and tried taking G.E.D. classes.
The G.E.D. classes weren’t for me. So, at 18 years old my mom signed me up for Job Corps. I went to Job Corps in February of 2005 and I began my trade of Culinary Arts, and took my G.E.D. classes there. It’s at Job Corps, where I met my eldest son’s father. That had quickly proved to be a toxic relationship, but before I knew it, I found out I was pregnant with my son Alex.
Eight months after starting at Job Corps, in October of 2005, I graduated with my Culinary Arts degrees, my G.E.D. and even got my drivers license. I came back home, and began working to save up for my new baby. My son’s father graduated and moved to my hometown too. I then had my son at just 19 years old. While that seemed great at the time, I learned that it was all about to change.
We got our own apartment, and then things began to get even more toxic with my son’s father than I previously thought they even were. He began to cheat on me with multiple women, and then became extremely physically and mentally abusive. We eventually got evicted from our apartment as a result of the police being called so frequently from the abuse. While he found himself a new apartment, my mother wouldn’t let me come back home. So I ended up in a shelter with my son. I was there for 4 months.
In the 4 months that I was in the shelter with my son, I began talking to my youngest son’s father. He knew a homeless shelter was no place to have a child, so he asked me to move to New Jersey to be with him. My mom caught wind of this and did what any other supportive parent would do [insert sarcasm here], she took me to court for custody of my son and tried to paint an
and tried to paint an awful picture of me as a mother. The judge saw right through her bogus claims, and ruled in my favor. I moved to New Jersey and began working immediately. Then after about 6 months, I found out that I was pregnant with my youngest son, Angel. We moved into a bigger apartment, and I was working at a job that I hated. At the time, this job was all that I could find. The area that we moved to was predominantly Spanish populated. While I spoke Spanish, it wasn’t perfect, so I couldn’t find any jobs to hire me. So I decided to enroll in Beauty School. Angel has severe Asthma, and would constantly get bronchitis and pneumonia, as a result of the air pollution from the city. So, I would have to miss a lot of school and stay with him in the hospital for weeks at a time, while his Father worked. I began to get behind in school, and would often have to stay late and go to classes on the weekends, to make up for the hours I was missing. I was 14 days away from graduation, when my son’s Father dropped the bomb on me, that he wanted to seperate. I didn’t have enough money saved to cover another month of rent, so I had to move back home to my Mom’s in NY. A while after I moved back, We could tell there was something going on with my son Alex, but we couldn’t figure out what it was. He would throw himself down screaming uncontrollably, and was unable to use his words at the age of 3, to tell us what was wrong. He was also extremely hyper. My Mom got fed up with it, so in the middle of the night, she told me to get my kids and get out of her house (to put it nicely). I went back to the shelter, this time with 2 kids, instead of just 1. I worked my butt off, and saved as much as I could. After about 6 months, I was able to get me and my kids our own apartment. It was really rough starting out. I had nothing for my apartment, no couch, no beds, nothing. But little by little, everything seemed to be falling into place. I was able to get everything I needed for my apartment, and also a car! By this time, it was time for Alex to start school, and the doctor suggested having him evaluated by the child study team at school. He was diagnosed with Autism and ADHD at the age of 4. I got him into the proper programs for him in school, and on some medications that would help him to be able to function better, and he started doing much better. At the age of 13, I took Alex to his pediatrician to get some bloodwork done, because I could tell there was something else wrong with him. He was diagnosed with type-1 diabetes. I beat myself up over this for so long, until the doctor said to me one day. “You know this isn’t your fault right? Alex was born with this, but it doesn’t always present itself until later in life. There is nothing you could have done to prevent this.” I’m often still found questioning myself on that. But I try to not let it get the best of me, and I just thank God that we’re getting his diabetes under control, and managing it better now. I began going to college full-time, on top of working 2 full-time jobs, as a single mother. I was studying Spanish and general studies. While I loved knowing that I was doing something, no one in my immediate family had ever done, it became increasingly overwhelming. I never imagined working, going to school and taking care of 2 kids on my own would be such a daunting task. I finished my first year, and had to take some time away from college. I barely ever got to see my kids, and my mental state was really suffering. So I had to make that sacrifice. I guess it wasn’t a huge loss. My Spanish is pretty great now. So I don’t know why I felt the need to go to college for it. One day when I brought my boys into the barbershop to get their hair cut, I met Alex, My (Now) ex-husband. The relationship was great, until it wasn’t. After about 6 months, it began to get very toxic. We stuck it out and managed to hold on to things for about 5 years, and ultimately decided to divorce. We seperated and I moved into a new home with my boys, and bought myself a brand new car! In addition to everything Alex was already going through, Angel had now been diagnosed with ADHD & O.D.D. He has severe anger issues at times, as well. When Angel was 8 years old, he lost his very Best friend in a house fire. This hit our whole family very hard. They were extremely close, like Brothers even. Angel began to spiral down after the loss. Angel gave me the scare of a lifetime one day while I was driving. He pulled up his sleeves to show me that he had cut his arms all up. When I saw this, I nearly crashed my car. I immediately got Angel to the ER, where he was admitted for a 24-hour psychiatric hold. Then transferred to a children’s Psychiatric hospital on Thanksgiving day. I had Thanksgiving dinner in there with my son that year. He was in that hospital for 1 month,
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