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...