Donna Piunt is a melanoma warrior, survivor, and awareness advocate. She has dedicated her life to encouraging and educating others about the importance of sun safety, and the seriousness of skin cancer and melanoma. She has participated in (and created her own!) advocacy and awareness campaigns to benefit others, and we have been blessed to support her efforts and are so honored to share her story!
Here is Donna’s Story.
How did you discover you had Melanoma? What type or stage do you have?
My melanoma journey began about 6 months prior to being diagnosed on November 21, 2011 with Stage 2b Nodular Melanoma. I had noticed a mole on my upper left thigh that seemed to change abruptly, and over time it began to itch and bleed periodically. I honestly did not understand the specifics of melanoma. I remember goggling skin cancer but at that time my mole didn’t fit the ABCDE’s guidelines because my mole was symmetrical, one color, and with even borders. So I thought no need to have it checked. I began to get nervous when I noticed the mole was increasingly itchy and was evolving in size and shape. It appeared to be scaly with uneven borders. When I went to my family doctor and had the mole shaved the Physician Assistant stated that she didn’t like the black spot she saw under the mole but no need to worry. If you don’t hear from me in a week call the office for the pathology results. Four days later I heard the words, “I am so sorry you have malignant melanoma”. Hearing those horrifying words has forever changed my life.
What has been the primary cancer treatment facility involved in your care? What have your treatments been like?
When my pathology report came back as malignant melanoma, I underwent numerous blood tests, chest Xray, CT scan and was referred to Fox Chase Cancer Center in Philadelphia to see Dr Jeffrey Farma a surgical oncologist that specialized in melanoma. While awaiting my first appointment with Dr Jeffrey Farma I researched my diagnosis and even staged my own cancer with the information that I had been told by Physician Assistant. However, to my surprise and shock I had under staged my cancer and was so upset upon hearing the news that I was stage 2b I felt as if Dr Farma was speaking a foreign language. Who did I think I was kidding by staging my own cancer!!! I underwent a wide excision and sentinel lymph node mapping biopsy of left upper leg that left a 7 inch scar which I call one of my battle scars:) I am so grateful that Dr Farma insisted that I see a dermatologist for a full body skin check up because I had two moles that were moderate to severe dysplastic nevi that needed wide excisions. Pathology came back that the cancer had spread to one of my lymph nodes so after hearing my options I opted to have all the lymph nodes removed from inguinal region. Because it had spread my stage advanced to Stage 3b and I was advised by medical oncologist Dr Anthony Olzsanski that I would have to undergo a form of chemo. After I was given two different drug treatment options I researched both of the treatments before my next appointment and after careful review of my prior medical history my doctor and I decided that Interferon alpha 2 b was my best course of treatment. I underwent one month of 5 day a week of IV Interferon at Fox Chase Cancer Center and due to the long commute I was transferred to my local Pottstown Memorial Regional Cancer Center Dr Jeffrey Stevens medical oncologist for the remaining 11 months of reduced dose of Interferon injections of 3 days a week. From the first treatment I experienced varying degrees of flu like symptoms that range from high fevers, nausea, body aches, vertigo and bad headaches. During my second phase of my treatment I persevered through with the use of humor by comparing my side effects with riding various amusement park rides. In spite of my perseverance I was only able to withstand 9 months of the injections before my body became toxic and physically collapsed. I spent two hospital stays and was transferred to a nursing home as a wheelchair bound resident for intense rehabilitation of PT and OT that lasted two months. After a year long struggle with severe fatigue and physical therapy I can walk without the use of walker or cane. I continue to see one of my oncologists every 3 months with CT scans and blood work every six months. Every 3 months I see Dr Carol Cola my dermatologist to have a full body skin check up.
What would you say has been the most impactful experience from your diagnosis and treatment?
The most impactful experience from my melanoma diagnosis and treatment was turning a negative into a positive by creating my blog The Cancer SPOT. The Cancer SPOT’s mission is to raise awareness, inspire, and humor my fellow warriors. Sharing my journey through my page has provided the opportunity to connect with so many amazing inspiring fellow melanoma warriors throughout the country to share experiences as well as to encourage one another through diagnosis, treatment, tests, and surgeries which has provided the most amazing support system that has been invaluable. Furthermore, my page has provided many wonderful opportunities to raise awareness and pay it forward for my fellow melanoma warriors.
What organizations have been the most helpful to you?
American Cancer Society has been such an incredible blessing for awarding hotel accommodations at the AstraZenca Hope Lodge for myself and a caregiver during my month long IV Interferon treatment at Fox Chase Cancer Center in Philadelphia. While recovering from treatment I was unable to drive for a period of time and was privileged to take part in the Road to Recovery program where I was assigned a volunteer to drive me to my doctor appointments. Since I am so grateful for the ACS blessings I have taken part in Relay For Life for the last four years. This year I was asked and humbly accepted to be Grand Marshal for 2016 for Relay For Life at my home town of Pottstown.
After my body had physically collapsed from Interferon treatment and a patient in the nursing home, I applied to Tina’s Place a retreat for Stage 3 & 4 melanoma patients and to my surprise I received email stating that I was awarded a week’s stay and would be the very first guest to stay at the cottage on Barnes Lake in Columbiaville, Michigan. My husband and I were so incredibly blessed after spending a week at Tina’s Place. Therefore, when I was asked to serve on their Advisory board I humbly accepted to pay it forward for future melanoma guests.
Fox Chase Cancer Center has been not only my major treatment facility but has been a great resource to getting involved with the Cancer Support Community Greater Philadelphia volunteer positions of serving as Melanoma patient representative for Advisory Council for Cancer Experience Registry: Melanoma which lead to being a guest speaker on Frankly Speaking About Cancer on a online radio show, and most recently taking part in a video/photo shoot project for the Frankly Speaking About Cancer® education programs for Cancer Experience Registry™.
What has been your biggest challenge since your diagnosis?
I feel that my greatest challenge is getting people to understand the seriousness of melanoma and that melanoma is not “just skin cancer” it is deadly!!! I can not begin to tell you how many times I have heard people say, ‘oh you have skin cancer that’s curable’. Melanoma diagnosis is so misunderstood and down played by many people that I encounter on a daily basis. Even though, I am so thankful to be celebrating no evidence of disease that could change in a heart beat. Currently there is no cure for melanoma. Melanoma is referred to by oncologists as nasty beast that is always lurking. Even after my diagnosis and treatment some of my close family and friends refuse to go to the dermatologist for a skin check up which I find very upsetting.
And your greatest source of strength?
Throughout my diagnosis and treatment I have found my greatest source of strength from my loving family and friends prayers, acts of kindness, and encouraging cards!!!! I am feel so blessed by the support of fellow melanoma warriors within our melanoma community that continues to offer encouraging words, acts of kindness, and ongoing prayer support through biopsies and tests.
Earlier this month you launched a campaign titled “Hand the Hoodie” to help raise pediatric melanoma awareness. Can you tell us about this campaign? What inspired its inception? How can people get involved and show their support?
I created Hand The Hoodie campaign for Pediatric Melanoma warriors to take part in by placing their hand print on the hoodie with their first name, age, stage, and State. After each warrior hands the hoodie they will take photo wearing the hoodie and post photo on their social media sites using the #HandTheHoodie and they will mail the hoodie kit to the next young warrior on the mailing list to raise pediatric awareness. Thinking back to when I began my journey while undergoing treatment I connected with fellow warriors online within our melanoma community and watched as many fellow warriors of all ages earned their wings due to melanoma which greatly saddened me. Each time another warrior was battling the beast I felt so helpless and desired to do something to offer encouragement and support. After hearing about baby Addison being born with melanoma in utero from Stage 4 melanoma mother Brianna I began following Addison’s Army Against Melanoma. When Addison earned her wings at the age of 2 I was so devastated. As time passed more and more children were diagnosed with melanoma. I felt increasingly helpless and desired to do something. Taking part in a fellow warrior Julie Frampton’s “Pass The Parasol” campaign inspired me to begin researching a sun safe product to use to raise pediatric awareness and that’s when I discovered UV Skinz. I felt their lime punch hoodie would be the perfect fit for the Hand The Hoodie Campaign. Everyone is encouraged to get involved in the campaign by tagging their friends, liking, sharing, and purchasing children’s hoodies throughout the year long campaign on their social media sites to raise pediatric melanoma awareness.
Do you believe tanning or sunbathing was a factor in your developing melanoma?
I grew up in a time when the use of sunscreen importance was not yet known. I spent my days playing outside and swimming in our back yard pool with no sunscreen and our only sun protection was to wear a t-shirt to cover our shoulders. Growing up my family only took a few day trips to the beach but each time the car ride home was miserable due to having sun poisoning. All my life I remember getting sunburned, even while wearing sunscreen, so when our family was planning a trip to Florida I took the advice of a friend and purchased a tanning membership card of twenty tans to “get a base tan” so that I would not get sun poisoning while on vacation. It was the biggest mistake of my life!! I now know that tanning before the age of 35 increases your risk of developing melanoma by 75%. I hope that through my melanoma advocacy I can encourage young teens to never use a tanning bed and to practice sun safe habits daily.
How has your melanoma diagnosis changed your life?
My life has completely changed since my melanoma diagnosis. I have become an advocate to raise melanoma awareness, fundraiser, and volunteer in a number of organizations as my way to pay it forward for all the blessings I have received through my journey. I live my life to the fullest and count every day a gift!!! It has been 29 months since my last treatment and I am so thankful to be celebrating over 3 years of no evidence of disease. In order to build my strength I began swimming 32 Laps Against Melanoma and dedicate them to encourage an inspiring fellow warrior that is battling melanoma. I am now on a melanoma mission of swimming 32 “Laps Against Melanoma” and quest to take part in a melanoma walk in every state within the United States.
Is there a quote, song, or book that helps or inspires you that you would like to share with our readers?
Through my melanoma journey I coined my own two phases, “Melanoma, you can’t have ME”!!! “Rockem Sockem, Melanoma you are going DOWN”!!! I have read a number of great inspiring and humorous books. There are three that I would highly recommend that I found that I could easily identify with their melanoma story: “Pale Girls Speaks“ has very special meaning because Hillary Fogelson sent me an autographed copy while I was a patient in Nursing home which provided the laughter that I needed to encourage me during a frustrating 2 month period. “Lemons Really Do Make Lemonade” by Sally Welsh is an encouraging quick read referred to as a melanoma patient’s survival guide which I received from my oldest daughter Michelle during treatment. Lastly I received Stephanie Bowen’s ”My Journey with Melanoma” which was very inspiring journal made up of diaries to her daughter written just in case melanoma would take her. She apologizes for not doing some of the things that she thought she should have done with her daughter.
What advice would you give someone who thinks skin cancer won’t happen to them?
I tell my family, friends, and even total strangers to get a skin check up, don’t think that it can’t happen to you!! Never never use tanning beds EVER!!! Love your skin by wearing sunscreen, lip balm, a wide brim hat, sunglasses, and protective SPF clothing. I personally carry my UVA & UVB 98% Belle The Brelli on all my travels. I don’t leave home without my sun safe accessories!!