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.

I have lost a whole month of my life that I can never retrieve no matter how I try. A month fraught with worry and levels of anxiety that cannot be described. Try as I might, no matter how I rationalize and intellectualize the need for constant follow up testing and that this is now and will be a fact of life for the remainder of my life, the same extreme worry precedes the testing and lasts until I see my Oncologist for the results. This last set of tests ended up provoking and even higher level of anxiety because of a 2 minute phone call from a secretary at my Oncologist's office. First and foremost, let me explain the events of the last 2 weeks.

My Oncologists, Dr. Armenio and Dr. Al Malki ordered a PET scan to be performed as it was 6 months since my last one. The standard of care for Malignant Melanoma calls for PET Scans twice a year. The insurance company denied this request. Because of this denial, the Physicians ordered 2 MRIs, one of the pelvis and one of the abdomen, both with and without contrast. Being a migraine sufferer, I had experienced several MRIs over the last 15 years but they were all of the head, not necessitating being placed full body into the MRI machine. I am not now nor have I ever been claustrophobic, but for the approximately 3 hours needed to perform both studies, I had to keep saying my Rosary just to calm myself enough to complete the studies. Words cannot describe the strength of will that it took to complete these tests. I have faced each test and procedure with as much bravery as I could, but I have to admit that these tests just about put me over the edge. Trying to understand why this was so difficult, I started to look back over the last 7 months to find an answer to my anxiety. It occurred to me after realizing just how much has been done that I was indeed at the end of my rope. Only after putting it all on paper did I realize just how much this poor aging body has been through. In 7 months I have had 4 surgeries, 4 MRIs with contrast, a PET scan, 3 ultra sounds because of a DVT (deep vein thrombosis), treatment for 12 weeks because of this clot, 2 CT scans with contrast, both ingested and IV push, visits with the medical Oncologist, surgical Oncologist, Dermatologist and my Internal Medicine every few weeks, blood tests almost every week and 2 months of horrendously toxic chemotherapy with Interferon. Just re-reading this diatribe gives me shivers and a new sense of wonder as to what one body can sustain without permanent damage. So, when I received a telephone call from the secretary at my Oncologist's office stating that the newest MRI results had been received and after reviewing them, the Doctor wanted to make sure that I had an appointment to come to the office to discuss the results.

Being an RN who has been in private practice for over 32 years, I knew what that meant. It meant there was something seen in the MRI that needed to be addressed. Little did I know at the time that both MRIs revealed positive findings. My follow up appointment with Dr. Armenio was not until a week from this above mentioned discussion with the secretary. It was the worst week thus far in this truly amazing medical journey. There were days that all I could do was go to work and throw myself into the duties of our very busy practice, then once at home, didn't even have the physical or mental energy to speak. I didn't share this with my family or my husband as I didn't want them to suffer with worry like I was. Of course, they knew by seeing me that there was something terribly wrong. I vowed to discuss this issue of waiting for over a week for any test results with Dr. Armenio.

The day of my visit came and the positive findings were discussed with the need for further testing. I expressed the absolutely unacceptable waiting time for the results of these tests and we came to a mutually agreed upon conclusion. If I couldn't be seen the day after a test was performed, one of the physicians would call me with the results. I am quite able to take any news in a phone call, what I can not nor will never do again is to agonize for over a week over results that could have been given to me so much sooner. Again, both of my Oncologists requested a PET Scan to further investigate whether the positive findings were directly related to the Melanoma. The first request was denied by the insurance company. The second request, in the form of an appeal of the first denial was again denied, necessitating a peer to peer review, which was also denied. This whole process took almost 2 weeks, so my anxiety and apprehension about these findings actually took on a life of it's own. The only option was to have a CT scan of the abdomen and CT scan of the pelvis both with and without contrast. This was booked for the day before I was to again see Dr. Armenio. I was in a state of torment unlike anything I had ever experienced. Even when I received the initial diagnosis, my acceptance of this devastating news was controlled and without angst. Of course, if I had any idea of what was to transpire in 7 short months, this probably would not have been the case. So, not only do patients worry and obsess about tests and their results, but add to that the struggle with insurance companies to approve the much needed studies, just makes this whole struggle a psychotic folly. And when you take into consideration that a PET scan in this area costs about $5,200.00 and the 2 MRIs and the 2 CT scans cost approximately $9, 500.00, it makes it just that much more unbelievable as to the lack of basic common sense to have denied the first PET Scan. Not only would I have been spared the physical torture and the multiple doses of toxic contrast, it would have saved half of the final cost.

The next day came and my visit with Dr. Armenio produced the best news I have ever heard. Yes, there were positive findings, but they were unrelated to the Melanoma and were not emergent. I took a deep breath for the first time in a month. After hugging Dr. Armenio, I departed to again return to work. During this drive as I was praying and thanking God, I realized that if I am to keep my sanity, I would have to find a way to face the frequent testing and waiting in a new and more constructive way. I shared with Dr. Armenio that the Melanoma wouldn't kill me, and he finished the sentence for me “the anxiety will kill me”. He stated that although he treats all kinds of cancer, it is only his Melanoma patients that experience this degree of fear and anxiety. Contemplating this statement, for me at least, I can understand exactly why that is. When I was diagnosed, my surgical Oncologist explained my specific pathology report and the importance of the mitotic rate. The mitotic rate is the frequency with with the cancer cells divide and multiply. A mitotic rate of 4 is bad news, my mitotic rate was 16. Compound that fact with the surgical Oncologist's need to send a second specimen of the lesion to Sloane Kettering Hospital in New York because he had never seen a mitotic rate that high without there being metastasis. All of these facts have turned a very level headed, even keeled kind of gal like me into a mushy lump of worry with each new test. I am always waiting for the next bad news. This must and will change.

It will now be my challenge to find a way to not only live with this disease but to embrace each new test as an opportunity to prove each and every time that,with the Grace of God, I continue to be healthy. The reality of the situation truly puts new light on the important events and needs of everyday life and how to prioritize. I look at everyday life with new eyes and a new awareness of what is important and what is truly not worth a second thought. And more and more subjects fall into the category of not worth a second thought.

It is with the good news of NED (no evidence of disease) that my husband and I decided to celebrate with a beautiful dinner at a gorgeous local restaurant. We shared our relief and our shared feelings of blessings for the opportunity to continue our fairytale romance. We will not give up without a fight, not ever.

It has been almost three weeks of concern since my last 2 MRIs. A PET Scan was requested by my Oncologist Dr. Armenio. This was requested because of the high mitotic rate of the primary lesion. A mitotic rate of 4 is of concern, my pathology registered a mitotic rate of 16. A PET Scan shows hot spots and unusual activity within the body regarding lymph node and tissue changes. My insurance company, which is Blue Cross Blue Shield of Rhode Island denied this request, making it necessary to complete the 2 MRIs.

MRIs are a wonderful diagnostic tool but they show incidental findings that although need further investigation, should not add to the worry and invade every waking hour.

The price of a PET scan in this area runs between $5,100 and $5,600. The price of the 2 MRIs is almost exactly the same price.

So now when there is something seen in the MRI that needs further studies, Dr. Armenio again requests a PET Scan. The first request is denied. An appeal was initiated and this was also denied. Dr. Al Malki, who is a Fellow also following me, insisted on a peer to peer review of this denial. The peer to peer review was conducted with Dr. Robert Lawrence White who is the assistant medical director of Radiational Oncology with Blue Cross and Blue Shield of Rhode Island. This again was denied.

So almost three weeks later, we are still in the authorization stage, now for a CT Scan with contrast. The Physicians were trying to stay away from any further contrast as the 2 MRIs were performed with contrast.

This has been an amazing journey. When it is put in print it seems almost impossible that all of this has transpired in just 7 months. The saga is as follows: 4 surgical procedures each leaving scars that measure between 3 – 8 inches in length, 4 MRIs with contrast, 1 PET scan, 3 Ultra Sounds because of a DVT (deep vein thrombosis) causes by the PICC line and 2 months of staggering doses of Interferon which proved to be liver toxic.

My question to Dr. Robert Lawrence White is, “do you think this has been fun? Do you think that I enjoy all of this medical invasion of my aging body?” “If this were your family member, would your decision be the same? I think NOT!!!”

I loath every one of these tests. I tolerate them with as much courage as I can muster. All while keeping up with a very challenging full time position as a Registered Nurse in private practice. All the while trying to soothe my husband's and family's worries and concerns.

I intend to continue to live the best life I can for as long as I can with this dreaded disease of Malignant Melanoma, but never even dreamed that I would have to fight the insurance company to achieve this goal.

It has been a tortuous several days since my last MRI. I had two last week. Both with and without contrast, one of the pelvis and one of the abdomen. Part of this torture has been created by my own fear of recurrence but also exacerbatd by the Physician's office.

I received a phone call on Friday from the Physician's office stating that they had received the results of the MRI and the doctor wanted to make sure that I had an appointment to discuss the results. Now, on the surface, this statement may mean just that, an inquiry regarding whether I have an appointment. But those of you who have been where I am now, know that my mind has been in overdrive. This proves that a little bit of knowledge can be a very bad thing and ignorance is indeed bliss.

It has prompted deep thought to resolve this issue. I will have a discussion with my Physician regarding this issue so that there is no repeat of this torture. From now on, I will not wait for results! I know, being a member of the healthcare system myself that phone results are frowned upon. That said, I will not allow myself to be mentally tortured like this. I can handle anything, including bad news, but what I can't handle is the unknown.

Cancer patients in general live a life from test to test, from result to result. Those of us who work in the healthcare field MUST be cognizant of the patient's stress level and act accordingly. My results, from my mouth to God's ears, may be totally fine, but the stress these past several days has elicited is unacceptable.

I have 2 more days before I see my Physician....they will be long days in which I will talk to myself constantly to remain positive, but I will never allow this to happen again.

PLEASE!!!! DON'T LET THIS BE YOUR REALITY....SEE A DERMATOLOGIST AT LEAST ONCE A YEAR AND USE SUNSCREEN....THIS SCHEDULE SUCKS

After a wonderful 5 days in West Palm Beach, seeing gorgeous flowers and birds and the greenest of green, it is back to reality and back to the constant medical tests and follow up visits that are now a way of life for me. 

This winter in New England has been brutal with the coldest of cold temperatures and constant snow and ice. The degree of dismal can't be compared. The 5 days in Florida was a way to refresh and renew the spirit and to make new my resolution to stay healthy myself and to teach others how to stay safe in the sun.

The renewal began with an MRI with and without contrast of the pelvis. 

This test is accomplished after being strapped onto this narrow table and secured in place. An IV is started to be used halfway through the procedure to inject contrast dye to better visualize the area in question.

After being secured on the table with the IV in place, you are moved into the middle of the MRI machine. The fit is so tight that you couldn't move an inch if you tried. Because the machine is so noisy with different degrees of piercing sounds, ear plugs or headphones are a must. Once the pre-contrast views are taken, the contrast dye is injected IV and the same views are again filmed. There is a warm sensation throughout the body and a perfume taste in the mouth. Some patients experience nausea, I didn't thank God. The whole process took 1 hour and 15 minutes in this bullet like tomb.

Two days later, another MRI was done, with and without contrast, this time of the abdomen and the liver. This was done because of the liver toxicity and complications due to the Interferon. The same procedure was done a second time, identical to the first. I was curious as to why these tests couldn't be performed at the same time, the pelvis and abdomen pre-contrast, then injecting the contrast, and then the pelvis and abdomen post-contrast. I was told that the direction of the machine would not be correct or optimal for one of the tests necessitating the 2 separate days of testing.

The week was rounded off with a visit to the PCP and more blood work. You have to understand that my visits to physicians pre-melanoma diagnosis were only as absolutely necessary. I would have to be half dead to see a physician. The fact that I am an RN in private practice always served me well in times of illness as the physicians in our practice are always generous with their medical attention. So, the multiple tests and visits to many physicians on a regular basis now is a huge adjustment to make. 

It will be a long week waiting for the results of the MRIs. As much as I try to stay positive, I still find myself in a very dark place from time to time, always praying that melanoma doesn't show it's ugly face again, and praying for the strength if it does.

All plans and preparations have been completed for a well needed and hopefully well deserved few days in the warm sun. Time to rest and reflect and get mentally ready for the tasks that are to come right after our return.


A new round of testing will begin. MRI to the abdomen and MRI to the pelvis with and without contrast and further blood tests.  I am starting now to surround myself with positivity and healing light. Each new round of testing elicits tension and fear.


But for the next 5 days, we will be in paradise...West Palm Beach...

How it all began

At 61 years old I am blessed to be a Mother, a Grandmother, have a Twin Sister and a Brother, Nieces and Nephews. Life is indeed good. I sit here today contemplating the need to tell a story. It is a story of how we must live in the present. None of us are promised tomorrow. At a point in life where I was my happiest, my life took a horrible detour. I will not let this detour define me. But I feel the need to tell the story to educate and hopefully prevent even just one person from having to experience my last 6 months of treatment for Stage III Malignant Melanoma.

This is my story.

I was a woman living the dream. At 60 years old, I had just married my soul mate. 

Previously, I had married very young at 18 years old. We had 3 wonderful children. After 20 years and insurmountable difficulties we divorced. My first husband passed away young from lung cancer 10 years after our divorce. 

I had been involved in a long term relationship after my divorce that lasted almost 20 years. It had been over many years before I finally decided to move out, move on and make a new life for myself. 

From 18 years old through 60 there was a lot of living going on. I received my Nursing Degree and started a career that I love to this day. The days and years passed quickly with the whirl of raising a family and working and everyday life. It is during this time span that I taught myself all sorts of fun things to do in my spare time. I taught myself to knit, crochet, needle point, counted cross stitch, petite point, embroidery, chainmaille, wire wrapping and beaded jewelry making. These hobbies always helped me through tough times. I could submerge myself into another time and place while I was focused on the duties at hand. It is also during this time span that I became an avid, even voracious reader. I found that I could actually transport myself into the novel to become an observer as well as a reader. During this time I discovered all sorts of new interests that also included baking and cooking. I became the family baker and would provide trays and trays of different baked delights, loving how these desserts were enjoyed by all. 

After leaving my long term relationship, I purchased a home in the same neighborhood that I had raised my children. It was truly like going home. I lived there for three years alone, intent on personal healing from a life of relationship difficulties. Thinking that being alone was far superior to a bad relationship was my mantra for these three years. My middle child, now an adult, kept encouraging me to go out and meet people, that I was too young to live my life alone. My response to these encouragements was always the same "I'M ALL DONE". 

Well, I was proved wrong. I met my husband in March of 2012 and we were married in November, just 8 months after our first date, on the weekend of Thanksgiving. It was a whirlwind romance and he is indeed a wonderful man. I never thought that it was my destiny to experience such a wonderful life with a man that is truly a gentleman. He wined and dined me, we danced and traveled and when he asked me to marry him there was no hesitation in my response. The answer was a resounding YES.

Our Wedding day was truly magical. We were married in our local Catholic Church, the service officiated by my Husband's cousin who is a Catholic Priest. The reception was an absolute blast that went off without a hitch.

We traveled frequently and this was such a joy to both of us but especially me. I really never traveled with the duties of career and family. 

We had just returned from one of our favorite places, Rockmere Lodge in Ogunquit Maine, when I noticed that a freckle that I had had all of my life appeared to look different. We were getting ready to again leave on vacation for a week on Martha's Vineyard, when I thought it might be a good idea to have this freckle looked at. I am a natural redhead with fair skin and literally millions of freckles.

One of the Physicians that I work with looked at it (location just above my right knee) and thought it a good idea to biopsy the site. In my wildest dreams, I never expected the diagnosis I received, expecting instead a diagnosis of actinic keratosis. The pathology report came in one day before we left for the Vineyard, MALIGNANT MELANOMA. It was an aggressive form of the disease as determined by pathology, with a high mitosis rate. The mitosis rate is how fast the cancer cells divide and multiply. A mitosis rate of 4 is normal, mine was 16.  

This diagnosis was 7 months after our fairytale wedding. To be honest, the gravity of the situation took a couple of months to truly hit me. As a Registered Nurse, in private practice for 32 years, I have dealt with the devastation of a cancer diagnosis. I often wondered if the bad news were ever to be given to me, how I would deal with it, having seen the devastation of surgery, radiation, and chemotherapy endured by my patients. The truth of the matter is that thankfully, the magnitude of the situation didn't sink in for a while, allowing me the time to make the necessary medical appointment and decisions that needed to be made quickly. 

My first thoughts were, "Oh Lord, how do I tell my children, my family and my loving husband of only 7 months". I delayed telling my children until I could process the information and get some input from medical experts and my team of physicians that will now follow me for the rest of my life. But I now had to tell my amazing husband of just 7 months, who had lost his first wife tragically at a very young age, that again, he would face a personal struggle that neither of us wanted for him. I, however, made a grave error in telling him that I understood that he didn't sign on for a ride like he would soon face and that I understood if he felt the need to leave and get on with his life...oh my God, was he angry. My husband is a happy, easy going guy. This was truly the first time I saw him angry. So with his decision to stick with me I prepared to tell my children.

I contacted the three of them, who all live close by. I called a family meeting with just my children, without their spouses or children, as I thought it would be difficult enough to relate the information needed for them to understand the situation without any distractions. They had no idea what the true nature of the meeting would be. In their discussion with each other before arriving at the family home, they surmised that we would be telling them that we were relocating to Florida because they know that the older I get the more I can't tolerate the hard New England winters.

My three children were all born within a 2 1/2 year time span. They have always for the most part been very close and brought up exactly the same way. Yet, their perceptions and reactions were so very different. Two of them accepted what I told them at face value without speculation. But there is always one in the crowd that makes you pay your dues. One of them realized that what I was telling them was only the tip of the iceberg and was deeply disturbed right from the beginning. 

I was totally honest with them. I shared with them what little I knew at the time regarding the staging of my disease, the aggressive nature of it and as to what might come after the first surgery. I had already been to a surgical Oncologist and was booked for surgical removal of the lesion itself and harvesting of lymph nodes to determine if the disease had spread. Honestly, I didn't even know what I was about to face. As a health care provider, most would assume that we have a better handle on all things medical even if it pertains to ourselves. This couldn't be farther from the truth.

Giving them a timeline of what I already knew would take place, I also gave them the "what ifs" of what was to come if the staging came back bad. They were told that if the staging was early, only surgical intervention would be needed. But if the staging suggested advanced disease, well then, I would be very sick with the treatment options available for Malignant Melanoma. Sincerely, in my heart, I didn't believe that staging would be bad and that surgery would be the end of the saga. They all left the family home in differing degrees of acceptance, confusion and deep concern. I wish I could have avoided telling them such awful news, as they had lost their dad a few years earlier to lung cancer. They are amazing people and all three of them took leaves of absence from work and took care of their dad until his death. So to again bring up the subject of cancer and the future pain and suffering they would witness just about killed me.

This discussion took place 2 weeks before the scheduled surgery. That night we planned a family dinner to include the whole family, to take place the Sunday before surgery. I am known for my family meals. My grandchildren who are now grown into adults themselves, still text me and ask for a "Memere meal".  I am known to them as Memere, the french version of Grandma. 

We had a wonderful family gathering that Sunday and toasted to a healthy future but my heart was heavy with what the future had in store. 

Tuesday, August 19th, Dr. Steven Katz, my surgical Oncologist performed a wide excision of the lesion itself just at the level of the right knee and harvested lymph nodes in the right groin to check for the progression of the disease. I will share pictures of the leg incision but leave to your imagination the 3 inch incision in the right groin.

The size of the removed lesion was about 9mm which is smaller than a pencil eraser. The actual size of the incised area was 8 inches by 4 inches and very deep into the tissue of the lower thigh. The very large resection was needed because of the aggressive nature of the lesion and it's mitotic rate. 

Waiting for the final pathology and staging of the disease was torturous. It took almost 3 weeks for the final analysis. Unknown to me at the time, my Doctor had forwarded the specimen not only to our local hospital for pathology but when he received the results, didn't trust the results and forwarded a sample to Sloane Kettering Hospital for the foremost Melanoma authority to examine and analyze. Both sample pathologies were the same. Staging was as follows : Clark III 2b N0 M0. Although there was nodal activity, there didn't seem to be metastasis to the lymph nodes which was quite a relief, but because of the stage and the aggressive nature of the pathology, chemotherapy was suggested by my surgeon. He, however, deferred to the decision of the Medical Oncologist, Dr. Vincent Armenio, whom I had, as of yet, not seen. An appointment was made for the next week to see Dr. Armenio. During this visit, the extent of the disease, the prognosis and the treatment options were discussed. At the time, I was so devastated with the diagnosis and the prospects of a much shorter life than I expected, I was open to any suggestions by my health care team. Dr. Armenio suggested chemotherapy in the form of Interferon 2b via PICC line. 

All arrangements were made for the initiation of the therapy which was delayed for one week as my husband and I were getting ready to go on our first cruise. This is a vacation with family and friends that I had looked so forward to and didn't want to cancel. We both thought it would be a good way to rest and get ready for what was to come. How wrong we were.

The cruise was awesome and came and went too quickly. We had fun and rested but all the while anticipating the medical journey ahead.

We returned from the cruise on Saturday and Chemotherapy would begin on Monday. Again, being a nurse for over 32 years did not get me ready for the horror that would soon begin. 

On Monday morning, I had an appointment at Roger Williams General Hospital Radiology Department for the insertion of the PICC line. As an RN, I knew what a PICC line was and how it was inserted, what I didn't know was what it would feel like. Let's just say that I shouldn't have chosen to go to this appointment alone. I perceived it as the same as a little bigger IV insertion...so very wrong. 

After the insertion of the PICC line, I drove myself to the first Chemo treatment at the Roger Williams Cancer Center. Before the treatment was started, I met with the Pharmacist who educated me about Interferon and it's side effects and expected outcomes. I put up a good front but after what I had just been through with the insertion of the PICC line, I could just about keep my mind focused on his words. Now, came the time to start the infusion. In all the literature that I had read, the side effect profile, if experienced, would happen approximately  3 - 6 hours after infusion of the drug.  Again, how wrong that was. I was given pre-meds of Zofran and Prednisone and then given the Interferon. Keep in mind that I had driven myself to these appointments. 

As an aside, I am fiercely independent and up to this point, refused help of any kind. I was determined to do this myself without burdening anyone else including my family and my husband. That was one of the stupidest things I have ever done.

I wasn't out of the Cancer Center's parking lot when I knew I was in deep trouble. I was so weak and so violently sick I didn't know how I would make it home. The Center is only 12 miles from my home but it was the longest 12 miles of my life. I am a fervent believer in God and his Angels and I prayed loudly all the way home to deliver me home in one piece without killing myself or God forbid someone else. Upon thankfully reaching my home, I started vomiting violently for the next 9 hours. When my husband arrived home from work he found me sobbing and vomiting uncontrollably. I truly didn't know how I would live through the treatment. Interferon is given every day for a month and then 3 times a week for the remainder of a year. That would be a very long time to be so very ill. And I had intended to work right through my treatment. I had two stipulations for my Oncologist when I agreed to Chemotherapy. I refused to leave work and I refused to give up date night with my husband. That shows just how clueless I really was.

The next morning, still exhausted from a night of vomiting and sobbing, I again returned to the Cancer Center, this time in the company of my husband who refused to let me go alone. I asked to speak to the pharmacist who had spoken to me the day before. I shared with him what had happened the day before and that I feared I wouldn't live to see the end of the month if it continued in this manner. He consulted Dr. Armenio who in turn ordered a pre-medication cocktail which included Zofran, Prednisone, Benadryl, Emend and Reglan prior to the infusion of the Interferon. 

The cocktail worked and was given to me every day prior to the Interferon. I never vomited again while on Interferon.

While going through Chemo, although the vomiting was controlled, you feel so very ill that words cannot describe the experience. I can show you, though, in pictures the difference just a week makes from pre-chemo to one week into chemo.

These photos were taken exactly one week apart. I almost didn't recognize myself in the second photo. The consequence paid for the treatment of this devastating disease was a detachment from the true body and spirit. I can only equate it with a loss of myself. The essence that is Me was gone. I thought at the time that I would never recover that original person that I was. I felt she was gone forever, only to be replaced with a much weaker, feeble version of who I was. My delusion of continuing a near normal life during chemo was long gone. 

For the month that I received Interferon daily by infusion, I was unable to work, cook, read, do any crafts, I couldn't even hold the tools for these crafts. I existed as an empty vessel without worth or direction. It is at this point, as many others have experienced, that once broken to the base and the depth of despair, that the climb back to the living takes place. My husband and I got through this horrible time because of the generosity of my family and friends. My twin sister and my friend Marie cooked for us for the month. Each one would deliver or have my husband pick up a week's worth of meals. My brother would come to deliver goodies and words of encouragement. My daughter-in-law would bring over healthy food options to keep up my strength during my weakest moments. My best friend would come to visit a few times a week with frozen treats to sooth my very sore mouth (one of the side effects of chemo). Cards and flowers kept streaming in from so many friends and co-workers that it was almost embarrassing.

I had to learn a great lesson in humility, humanity and the acceptance of help. This was a bitter lesson indeed. As a fiercely independent woman, I prided myself in always being able to handle any situation despite the difficulty. Having to say that I was unable to keep up my duties as a wife, mother, nurse etc. was killing me. 

I work with an amazing group of people. The Doctors in the practice were extremely supportive. The girls, from the medical secretaries to all my Sistas in Nursing were just wonderful. During my daily chemo they would send me text messages of encouragement and actually designed a tee shirt which they all bought and wore and took pictures to show me their love and support. They are truly amazing.

My family sent daily messages and jokes and photos, all with the hope that it would lighten my worry and pain. Before I started chemo, my middle son sent me a video of a message that he wanted me to live by. It has become my theme song that I have played everyday since he sent it to me. It is Sara Bareilles "Brave". 

In reality, the month of daily chemo passed quickly. During the therapy, I noticed that my eyelashes appeared to be unusually long. When I asked the Pharmacist what this was all about, he told me that it was rare but it was a side affect of Interferon. I thought to myself, "well, at least I'm not loosing my hair". Now, I have to take a minute to explain something. I was born with very thick, quick growing deep red hair. This has been my trademark since I was a little girl. Being a twin also led to me responding to many different names besides my own such as Twinny, Joan (my twin's name) or Big Red (I am quite tall at 5' 9" at my tallest). So, when I heard of the rare but not too intolerable side effect of my eyelash growth, I thought that maybe I just might escape this experience with the joy of not using mascara ever again. Again, how wrong I was, as I'll explain later.

About 2 weeks after the end of my daily infusions of Interferon and starting the 3 times a week injections of Interferon which I was able to do myself because of my profession, my mother passed away. She was 84 and very frail. Unfortunately, for the last 3 months of her life, I was unable to see her. I had kept my diagnosis from her thinking that at her age she didn't need this heartache. Then during chemo my white blood count tanked into the toilet and I was instructed to stay away from visiting or being anywhere that I could catch something. Because of her failing health and chronic problems with GI symptoms, I couldn't take the chance of catching something. If I had only known that I wouldn't see her again, my decision would have been different. 

It was about this time that more complications due to the Chemo started to show their ugly faces. I started to loose handfuls and brushfuls and tubfuls of hair. Each brush stroke filled with hair to the point that I would have to clean the brush out after each stroke. This process continued for 2 months until it eventually slowed and stopped. I hadn't lost all of my hair but 2/3rds of it. And as I am reminded constantly by my family and friends, the amount I have left is what normal people have as their full amount of hair, so I shouldn't worry. 

I have always prided myself in being a rational person and in control at all times. I never expected to grieve over the loss of my hair. I have endured by now multiple surgeries, chemo, debilitating weakness and fatigue and nothing threw me for a loop like the loss of my hair. Even knowing that studies showed that the hair would eventually return to pre-chemo status, I continued to mourn the loss of it. I am very lucky that the new growth has quickly started and that you can no longer see my scalp for the new growth. The psyche is a truly amazing and puzzling  and an illogical animal.

I was fitted for a wig that was as close to my color and style as possible. In my position at work, I see many patients on a daily basis and didn't want to have to explain my hair loss if it got any worse, but vowed I would only wear it if absolutely necessary. As it turns out, the hair loss ceased and I have not worn the wig. But with my Niece's wedding looming near, I didn't want to take the chance of being without hair for that very special occasion.

It was also at this same time that I developed two, more troubling side effects from the chemo. The first was a swelling in the right arm from the shoulder down to my fingertips. The arm was red and swollen and ached. I actually almost omitted telling my physician during my visit as we had so many other things to discuss. But upon moving it and experiencing pain I mentioned it to him. The look on his face revealed that it was a good thing I had mentioned it. I was sent back to the hospital for an UltraSound of the arm with proved that I had a DVT in the arm after the removal of the PICC line. The clot extended from the bottom of the clavicle in the chest to the under arm area. This started a 4 month treatment of Lovonox injections followed by Xerelto to try to dissolve the blood clot. I could do no lifting or exercise that might dislodge the clot. My first reaction was "What Next". I was soon to find out.

At the same time that the DVT was diagnosed, I was feeling really awful. I couldn't put my finger on it and attributed it to just the consequence of Chemo. But being thorough, my Doctor had some blood work done along with the Ultra Sound. He called me the next day to tell me to stop the injections of interferon until I could come in to see him and discuss the matter. 

I saw him 2 days later to learn that my Liver was in a toxic state and if we didn't stop the Interferon it could lead to permanent liver damage. Although I quickly and happily stopped the Interferon, I will always wonder if I made the right decision. In further research, I have learned that Interferon will only decrease the recurrence rate by 7%. I live in hope that the 2 months I did take Interferon was enough to give my body the head start it needed to conquer this dreaded disease.

At this same time, I returned to work. I have to admit that is was the most challenging time yet. I vowed that I would get back to as normal a life as possible. In my heart, I never thought that I would feel like my old self again. My patients were so thrilled to have me back and most were so shocked to hear why I had been out. The girls I worked with didn't want to tell them of my diagnosis and left that to my discretion upon my return. 

Days turned into weeks and the fatigue was debilitating. My Internist explained the process to me and made me understand that the Interferon and the doseage I had received were massive and it would take time to feel better. She pleaded with me to take time off, which I would not do. So I struggled through each day. Returning home, I would do the best I could to make dinner and then would go straight to bed. Around month 2 of being off of Interferon, I noticed that I was staying up a little longer after dinner was prepared and the clean up was done. I felt well enough to resume date night with my husband and looked forward to it all week. Month 3 after stopping interferon, I could finally say that I felt almost like my old self. My patients were remarking that I looked very well and was smiling again with the same love of life that I had before beginning the remarkable medical journey. It is always the small things that make the biggest impression. I was leaving our local market after doing the weekly food shopping when I got a flashback of my first attempt at picking up a few groceries by myself after chemo. I was still very very weak and didn't know if I could do it without my husband with me. He came with me everywhere because of my fear of collapsing due to weakness. I did achieve this task, albeit very slowly. As I remembered this achievement, I remarked to myself what a difference a couple of months made. I was walking to my car with a full basket of groceries at a very quick pace, without any fatigue or weakness at all. 

One month passed before my appointment with a Dermatologist. Up to this point we had addressed the pressing medical matters at hand and had delayed the appointment with the Dermatologist until I could tolerate further treatment. On my first appointment with Dr. Lori DellaTorre, a full body exam was performed. Approximately 30 areas were treated with liquid nitrogen to freeze off areas in question and two other areas were biopsied. One week later I received a call from Dr. DellaTorre telling me of the positive diagnosis of Basal Cell Carcinoma in both of the biopsies. One location was the left upper arm and the other was located on the middle left back area. I was again scheduled for surgery to perform wide excisions of both areas. The week before Christmas of 2013, surgery number 2 and 3 were performed. I have included a picture of the left arm but not of the back as I couldn't take a picture of the back excision without exposing too much of myself. But it is the same size as the left arm excision. 

Again, the wait for the final pathology was a long one. This time, the pathology revealed clear margins and for the first time in over 7 months I could actually say that I was cancer free.

So, although the original diagnosis was Stage III Malignant Melanoma, the additional treat of Basal Cell Carcinoma was just the icing on the cake. As I later found out, they can live hand in hand under the right conditions. Those conditions being redhead, fair skinned with a history of very bad sunburns. Which brings me to the original reason for this long story. 

When I was young, the medical world did not know the correlation between Melanoma, Basal Cell Carcinoma and the sun. We weren't advised to slather on the sunscreen. We didn't know the damage the sun could cause.

As a redhead, I always dreamed of having a golden tan. I attempted to achieve this goal my whole life. A family member had advised me of the "baby oil and iodine trick". I tried this trick when I was 16 and spent the better part of a week in bed on my belly because I was so severely burned. 

But now we know better. And I am paying the price for my genetics and the sun. This story is my attempt to educate others to the dangers of the sun and to tanning booths. The latter should be outlawed. 

After my medical journey, most of my family has been seen by a dermatologist. A niece has needed surgical removal of a basal cell carcinoma and my middle son has had a basal cell carcinoma removed from his face. The bottom line in this story is awareness and vigilant sunscreen use. 

My journey could have been prevented in many different ways:

1. the use of sunscreen.
2. staying out of the direct and strongest sun of the day
3. regular check ups with a dermatologist

If my melanoma had been detected earlier, I wouldn't have had to endure chemo. It would have been surgically removed at an earlier stage without the need for further treatment. All of my caucasian friends and family need to be followed by a Dermatologist at least once a year for a full body examination. We all need to take responsibility to spread the word of the need for regular check ups and the use of suncreen 50 SPF.