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:
- the use of sunscreen.
- staying out of the direct and strongest sun of the day
- 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.
No comments:
Post a Comment