December 14, 2014

It has been a whirlwind few weeks starting with the Thanksgiving holiday. Thanksgiving is my all time favorite holiday…I love everything about it. I love the cooking, baking and getting the house ready to entertain my family and close friends. This year was especially wonderful.  It seems that lately I have been comparing all of this year’s joys and accomplishments to last year at this time. I truly lost a whole year of my life. So, after just existing last year and not participating in any family functions, this year I took back my life.

Thanksgiving was a complete success and I was so happy to have hosted it again. Last year was one of the few years of not hosting  Thanksgiving in the past 44 years. The Thanksgiving weekend continued with hustle and bustle. My Norm and I attended a wonderful concert by Mannheim Steamroller, one of my favorites. We went out for dinner on Saturday night with 2 of my favorite people, my brother and his lovely wife. Sunday was spent decorating the Christmas tree and the little weeping cherry tree outside. I know that to most people who will read this will not see anything outstanding about this very busy weekend. To me, it was a sheer miracle.  To once again be able to accomplish this full weekend without having to take to my bed was nothing short of miraculous.  This is all achieved while still keeping up with a very demanding full time career and taking care of an eight room house.

Since Thanksgiving it has been non-stop hustle and bustle. We have attended wonderful concerts by Celtic Thunder and Linda Eder. There have been company Christmas parties and birthday parties. I have been so grateful to be able to participate in all of these.

My focus of thought and reflection shifted on Wednesday of this week. While on facebook, one of my melanoma support friends shared the newest study on the efficacy of high dose Interferon therapy. This was the only option offered to me when I was diagnosed 17 months ago. The wide range of emotions after reading the findings was dramatic. First I must share that when my Physicians discussed my options, Interferon was the only option after extensive surgical excision and removal of lymph nodes. The findings of the “mature” data of this very long study revealed that high dose Interferon therapy did not improve survival from this dreaded beast and only delayed recurrence in those that would have been genetically predisposed to recur by a mere 6-9 months. To say that I was devastated is an understatement that cannot be put into words.

As most of you know, I have had 5 wide excisions and SLNB in a time span of 10 months. I got through all of these without a problem and without any disruption of my life as a whole. I continued to work full time and to perform the duties needed to keep up a big house and a happy husband. That is, until starting the Interferon.  Let me share with you what Interferon stole from me. It stole away my independence. It stole my health. It stole my strength. It stole my hair. It stole my balance. It stole my memory. It stole my thyroid and almost stole my liver. Now to find out that I did it for nothing is almost more than I can bear.  We all make decisions according to the recommendations of our Physicians. These recommendations are based on the latest technology available at the time and the staging of the disease. My Physicians gave me their best recommendations at the time with the information available.

Some of the precious human functions that Interferon stole have been restored to some level. Some have returned fully and some will never return. My hair has been restored to its full pre-interferon state. My liver function has returned to pre-interferon status thank God.  My memory loss will be permanent as will the death of my thyroid and my balance. This was never so more apparent than during my office Christmas party. Those who know me well know how much I love to dance. Pre-interferon I would spend a wonderful night like our Christmas party dancing the night away. My pre-Interferon schedule included 3-4 nights a week taking Zumba classes. Interferon has robbed me of the ability to dance due to its greedy taking of my balance. This problem is worsened when I am fatigued. So, walking like a drunk when I don’t drink can be embarrassing and dangerous.  And some of you that read this discourse might remark that it is a small price to pay for continued NED. I would agree 100 percent if it weren’t for the new knowledge of allowing such a toxic treatment for absolutely no gain.

So, yet again, there is new information to assimilate and to own and to move on. I will never waste precious time by thinking of the “what ifs”, but like any other losses, this will take time to process, to own and to successfully mourn. The one and only “what if” I have engaged in was to realize that if I had just allowed the surgeries and not the interferon, my life would not have changed to any degree. This is the issue that I am grappling with. Did I inadvertently cause my degree of health loss by misinformation.  And my biggest regret is submitting my precious husband and my family through an absolutely nightmare of a year.

The “new” me is different than the “old” me. But I will be forever grateful for the chance to experience the wonders of life, the beauty of the seasons, the love of family and friends albeit a little less than the person I was.