Unique Melanomas

My story began in 1989 when I had something that itched on the back of my left thigh. I scratched it and it hurt so, being a nurse I found a mirror and looked. I saw a small 4mm round “packman” looking brown smooth mole… or was it? The area that would be “packman’s” mouth was high toned pink. I knew what it was but was too busy to do anything. I had recently been through a difficult divorce and a move to a new town.

We knew what it was

When I finally saw a surgeon, both he and I knew what it was. He told me he was going to do an elliptical excision and to return in 10 days for removal of my stitches. After 10 agonizing days I returned to have my stitches removed. When my surgeon walked in I still remember his words: Well, I’m afraid we don’t have good news. You have a Clark’s Level 3 melanoma! You will need to have more surgery. I was not surprised, I knew when I saw it what it was.

Ok. My ex-husband was “unable” to help watch our 3 children whom I had full custody of. At the time they were 12, 10 and 6. Thankfully my big sister said she would come from Toledo, Ohio. All went very well. My surgeon did a wide excision with a split thickness skin graph. No further treatment was necessary.

In April of 2007, 18 years later, a bump in my groin had increased in size… but, it would have to wait as my eldest daughter was getting married! I’d flown to and from Florida from Massachusetts for the wedding and had developed a slight “cough”. I finally got the courage to see my NP about the bump!! She said I needed to see a surgeon. I did so and the groin node was removed on July 30th of 2007 and came back melanoma - same leg, 18 years later. I was referred to a specialist in Boston, Dr. Michael Atkins at Beth Israel Deaconess Medical Center. With an appointment the end of August.

My "cough" worsened

My “cough” had worsened causing me to stop by the Emergency Room on my way to work. I was short of breathe and the cough had changed. They put me on oxygen and did a chest x-ray. Guess what? I have blood clots in my lungs!! What next?? Next was a CT scan, a Heparin (blood thinner) infusion and a trip to the Special Procedure department to be given “clot busting drugs”. Then up to the Coronary Care Unit. I had to be flat on my back for 12 hours and couldn’t move my right leg. Eating was interesting!! My newly married daughter and son-in-Law flew up from Florida to help my son get my house ready for my return. Five days later I went home. A new appointment was made in Boston to see Dr. Atkins and the surgeon who would do my needed surgery.

Finally around the end of September I had my surgery: a wide excision of my left groin with removal of 17 pelvic and abdominal lymph nodes and a muscle transfer to cover my groin area. They used one of my quads. The worst part of all this was the first time I was gotten up to a walker and put a toe of my left leg to the floor with minimal weight. It was awful. Eventually I learned to manage walking with my walker and went home after 5 days with to Jackson-Pratt (HP) drains hanging from my upper thigh. I would measure each drain output twice or more a day and return to see my surgeon every 2 weeks until they could be removed. Once the drains were out I could start my radiation!! Yup! I received 54 Gray (or is it Grey?) over the next 17 week days. Aquaphor became my best friend over this period.

That finished, my immunotherapy could begin: Interferon. I had to have a special long term intravenous catheter placed (a PICC line) and would receive my therapy only if my labs were ok. Well, after only 17 infusions I was put on subcutaneously administered Interferon. By May of 2008, I was taken off the Interferon due to my development of Pneumonitis. The cough was back!!

So, after 4 years of my Pulmonologist telling me I would get better, it just takes time… 4 years already? I referred myself to a Pulmonary Specialist at Beth Israel Deaconess. Dr. Zibrak recommended a VATS (video assisted thoracic surgery) of my right lung with biopsies. So, here we go again. This was scheduled and done mid August of 2012 - results were that I have Idiopathic Pulmonary Fibrosis or Chronic Hypersensitivity Pneumonitis.

In September of 2013, my dermatologist spotted and birdied a spot which lead to another surgery for a pre-melanoma. This time a wide excision only. Since then I have moved to Florida from Massachusetts after selling my home. Bought a house with my married family and am on continuous oxygen!!! That’s it!!