Wow...it has been 8 months since I last wrote...why do I do it,  do you ask...I think mostly I write things down now for my children and grandchildren...maybe it is in the hope that they never forget me and maybe to show them that despite the tough battle, everyday life still happens. So, a lot of living takes place after a diagnosis of stage III cancer, but that everyday life has a huge black shadow that is quietly waiting and patiently tailing every move I make. Trying never to let it over shadow me, nevertheless it remains my constant companion.

With the news that President Carter is now one of our elite group of warriors, it brings to mind the all too recent, seemingly insurmountable battles that I have waged to get back to the rolls of the living. Those rolls are easily taken for granted by most but never by a warrior. Everything we warriors do from the mundane to the glorious is a sweet victory.  Nothing and I mean absolutely nothing is taken for granted. There is gratitude for everything I experience from the beauty of nature to the miraculous medical procedures that have extended my life.

Still, 2 years after starting this amazing, painful, slow, sometimes frustrating health journey, there is no finish line in sight. It is this thought that saddens me when I hear of a new member of our Warrior team. There is never an "ok, surgery is complete and now I can get on with my life". The intrusive tests, constant biopsies, long weeks of healing and never ending oncology appointments must be woven into a very busy life and career.  I try to accomplish this with as much grace as I can muster but I have to admit to feeling that I am just not able to do all that is required. But I NEVER quit.

And maybe that is the legacy I want to leave for my dear children and grandchildren. Their mother will never quit trying to stay with them for as long as she can. My promise to them is to keep up the good fight,  as my father would have so eloquently said. I am not ready to be their guardian angel just yet.

I WILL NEVER QUIT !!!!

So Much More than Melanoma Survivor: December 14, 2014It has been a whirlwind few week...

So Much More than Melanoma Survivor: December 14, 2014
It has been a whirlwind few week...: December 14, 2014 It has been a whirlwind few weeks starting with the Thanksgiving holiday. Thanksgiving is my all time favorite holida...

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.

So Much More than Melanoma Survivor: It has been quite a while since I've added to this...

So Much More than Melanoma Survivor: It has been quite a while since I've added to this...: It has been quite a while since I've added to this blog...alot has transpired in the 5 months of silence, some good and some not so good...

It has been quite a while since I've added to this blog...alot has transpired in the 5 months of silence, some good and some not so good but the closer we get to Thanksgiving, I feel the need to share.

In a crazy way I am thankful for my diagnosis. I know this sounds like I have joined the crazy side of life but if it weren't for my diagnosis my family would not have taken the initiative to go to a dermatologist. Since my diagnosis, two family members have had surgery to remove lesions. One family member has had a displastic lesion removed and another family member has had 3 surgeries in the last couple of months to remove basal cell cancers. This is the one and only bright side of an awful diagnosis. If my dear loved ones are followed closely, even if something bad is diagnosed, it will be small and manageable. For this I am extremely grateful.

It has been a very busy week, working alone all week. As most of you know I am a Clinical Nurse Specialist in the field of ENT, so I see lots of patients everyday. But being alone this week has given me time to reflect on this past year and how far I have come from last year at this time. Last year at this time I was forced to discontinue Interferon because of severe liver complications. This year I can truly say that I am almost back to my pre-diagnosis self. To be honest, I never thought that I could ever come close to feeling like myself again. I usually possess unlimited energy which was gone for a very long time. Sure, I worked full time and continued to keep my home and take care of my husband but I had no energy to enjoy any of the pastimes I have always loved. Thank God this is slowly resolving.

It has been a challenging several months also as I have had another wide excision for yet another basal cell cancer and 4 more biopsies. One of the lingering side effects of Interferon is delayed healing of wounds. The wide excision took a full 10 weeks to heal. It is a very ugly scar but I truly don't worry about that. To me they are all badges and battle wounds that I don't hide anymore. Many times, my scars have initiated inquiries by my patients and I then have the opportunity to teach them about sun facts and the importance of sunscreen.

These last few months have also been filled with wonderful opportunities to travel. We have been to Ogunquit, Maine, Martha's Vineyard and the Bahamas and with each trip I have felt stronger and stronger. This has been such a blessing as my husbands loves to travel. He has been my rock and my motivation to push myself to do as much as possible. 

We had to say goodbye to my constant companion and protector, my most loyal sidekick, Buddy. This was so hard to do. He was my shadow during chemo. He would stay right by my side as soon as I would get home. He was such a wonderful pet and he had quite a personality. My patients loved to hear my "Buddy" stories, so much so that he had his own facebook page under the name Buddy Collette. When he died he took a piece of my heart with him. I will miss him forever.

Our anniversary is coming up. My Norm and I were married 2 years ago on the Saturday after Thanksgiving. This has always been my favorite holiday and knew that when he asked me to marry him, it would have to be near Thanksgiving. Last year, on our first anniversary, I was too ill to celebrate, so my Norm is making sure that this year we have a couple of weeks worth of celebrations, from special dinners to a Christmas Concert by Manheim Steamroller and finally he will be taking me to see Celtic Thunder, also one of my favorites. Life is indeed good. And we are truly blessed.

So the main purpose of this post is to emphasize that there can be a good life after a devastating diagnosis. Mind you, this is not without it's challenges and normal life never returns. The new routine must include multiple Doctor's visits, multiple invasive tests and the countless hours of worries waiting for test results. Having said that, there is nothing sweeter than doing the most mundane tasks knowing that you can do them. Just being able to get up each morning and face a busy day is a blessing the depth of which there are no words.

Wishing you all a very Happy Thanksgiving and a Blessed Christmas Holiday.

The human body is an amazing machine…we all have the same body organs and systems and yet we are as individual and unique as snowflakes. God made each one of us different and amazing. This is so very evident when speaking about what chemo, in my case, Interferon can do to the body. There are those that sail through the therapy with nary a side effect. I admire these people for their ability to adapt to the harshest of situations.

I have always been extremely tolerant to medications and surgeries and therapies. The one exception so far is Interferon. Right from the very beginning my body reacted as if it were under attack by a lethal enemy. From severe and persistent vomiting, to debilitating body pain and ultimately a destruction of my white blood cells, platelets and sending my liver into a toxic state, with the “splendid” side affect of turning on the switch to allow multiple basal cell cancers to grow rapidly.

Because of this, Interferon chemotherapy was discontinued. I will always question whether this was the right decision as the mitotic rate of the cancer was 15 which is very aggressive. I was not, however, willing to compromise and ultimately loose my liver to decrease my chance of recurrence by a mere 7%.

Thinking that once the Interferon was discontinued, I could get back to my pre-illness state. This is so far from the truth as to be labeled science fiction. My final dose of Interferon was on Halloween of 2013. The holidays came and went without any improvement of my symptoms of severe fatigue. I could make it through a busy workday but upon arriving home, struggled with the duties of a wife. Making dinner was quite a challenge and some days my husband wouldn’t even allow me to attempt it. He is not a cook, God love him, but is always so willing to go out in any weather to get anything that I might feel like eating.

The months were filled with so many different doctors appointments that I had a calendar just for this purpose. Multiple biopsies, multiple surgical resections to remove the prolific basal cell cancers, countless MRI’s and CT scans filled a very busy schedule. But low and behold, the fatigue started to lift. It was as if a curtain was being slowly raised to reveal a more alert and a renewed energy. Now, don’t think that my energy level was anywhere near normal. It certainly was not, but to complete a day’s work and be able to make dinner and clean up and actually stay up for a couple of hours was such a joy. I thought that finally I had turned a corner.

We had planned a trip to Florida as an escape from our horrible New England winter. This was planned in March. We did go on this trip but it was very taxing and depleted my newly renewed energy. Thinking that it was probably too soon to have attempted this trip, I just got back to my everyday living and working and the duties of home. This new wrinkle of resumed fatigue seemed to be getting worse and worse. I tried resuming an exercise regime of walking 3 – 4 times a week, 2 to 3 miles each time. Sometimes I could complete this and sometimes I would feel near collapse. To add to my concern, despite the fact that I was participating in as much exercise as I possibly could, and my eating habits had not changed one bit, I started to notice a slight gain in weight. This continued for a couple of months until at last I went to my primary care Physician. By the time I saw Dr. Greenier, I was in a bad way. I felt absolutely horrible, lacking any energy at all and feeling helpless to understand why. I had lost 2/3rds of my hair after the Interferon therapy, but was seeing some baby hair growing back, just to start loosing all my eyelashes. Clearly, there was something amiss. Dr. Greenier did blood work and sure enough, yet one more gift of the Interferon therapy, my thyroid was dead. This was causing the severe fatigue, weight gain, irritability and the loss of eyelashes and eyebrows.

I think that the only reason that I have been able to endure all of these setbacks is because my husband, my rock, my encouragement has never wavered. He has never lost his smile or his positive attitude. He repeatedly tells anyone who will listen that “life is indeed good”.

So treatment for my dead thyroid began 2 weeks ago and there is hope for renewed energy. My husband introduced me to Ogunquit, Maine during our courtship and it has been a favorite destination of ours ever since. We have made dear friends of the Innkeepers at Rockmere Lodge. My husband takes me there every year. We have just returned from this serene and magical place with a renewed peace of spirit and restored hope for a healthier summer.

One more challenge faced and conquered due to faith and hope and the cherished love and acceptance of my husband and family. LIFE IS INDEED GOOD.

Another week, another dilemma. The most recent visit with the Dermatologist resulted in 8 areas being frozen off and one area on the left leg being biopsied. Just received the call from the Dermatologist I was expecting and ready for. The biopsy is again positive. Since the Interferon therapy I have had 4 basal cell carcinomas surgically removed. Basal Cell lesions seem to live very comfortably right along with their big bad brother Melanoma. This one is also basal cell carcinoma. It seems to be one of the "wonderful" side effects of Interferon. Now it is time again to decide whether to have the lesion surgically removed or watch it carefully for any further growth. The biopsy margins were not clear, but I have had 4 surgeries in 8 months and frankly can't even contemplate the thoughts of another.

Although I know that this will be a life long ordeal, the difference between knowing this and accepting this is worlds apart. I have spent the last couple of weeks trying to retrain my mind to think and not anticipate. This is a herculean task. Anxiety tends to walk the same path as the melanoma medical regime. From constant testing and Doctors appointments to the fatigue and worry, even an educated mind can get caught up in the "what ifs".

Dealing with the constant change in body image is a struggle even at my age. The increasingly numerous scars, the changes in body shape due to lymphedema and the inability to exercise all contribute to the multi-faceted complexities of this dreaded disease.

So, the saga will continue and I am grateful for the opportunity to contemplate the saga. I could have easily been on the other end of this dreaded disease named Melanoma with no options and no time. I have been blessed with the option of treatment and hope for a future, never taking for granted my life journey.

Whatever path this saga takes me down, I pray for the strength to cope with dignity and grace through the maze that defines medical technology and the life of a cancer survivor.