Monday, September 7, 2015

A New Adventure in Learning

Today, I begin a new adventure in exploring, learning and sharing. Since my journey with the black beast began, I have received life saving (at least I hope so) medications and treatments and surgeries to make the beast retreat and hopefully never return. However, I live in the real world and know he can show his ugly face at anytime.

During these last 2 years my body has been filled with the most offensive toxic sludge that a body could absorb without dying from the treatment. I refused, at every new curve in the road to recovery, to give in to the black beast or to let him define me. Even though I felt like death itself, I got up, I got dressed and I got on with life, only missing once month of work while receiving daily doses of IV Interferon.





As is true for all conventional medicine, they are all toxic to the body. That said, they have beneficial side effects to warrant their use. For example, HCTZ (Hydrochlorothiazide) rids the body of fluid. It is, however, not selective in this action. So along with the fluid, essential electrolytes that the body cannot live without are also eliminated. All of this action, just by what it does, lowers blood pressure and helps control edema (swelling). The beneficial side effects of this drug, for some patients, can warrant the risk of their use. Education is essential to every patient to know the risks, the benefits and how to minimize the depletion of these life saving electrolytes. This is but one example of the multitude to toxic side effects that conventional medication can produce. Have you ever listened to a TV commercial about the drug of the month and decided after hearing all of the possible side effects, that maybe you would think twice about using it…. I know I have.

I live between two very separate and very valid thought processes. As most of you know, I am a member of the established conventional healthcare industry. I believe in it with my heart and soul, being the first to suggest a medication to a patient that I think might be beneficial. But, after becoming a patient during a life altering, life threatening disease and subsequent treatment, I have opened my mind to the possibility that maybe there exists a path that would make conventional medicine more tolerable. My interest in herbal remedies was piqued many years ago while reading a Nursing publication that spoke about studies of the use of the spice Tumeric as an herbal relief for arthritic pain and the pain and fatigue associated with EBV (Epstein Barr Virus) also considered by many as Chronic Fatigue Syndrome. This little tidbit of information was stored in the recesses of my mind and surfaced from time to time when new information regarding this herb and many more started to flood the media.  

I do not embark on this new path lightly. I have studied the alternatives that are available, for the last 6 months. This new investigation began as a last ditch effort for my own healing purposes. After 11 surgeries consisting of 5 wide lesion excision, all at least 6 inches long, and 6 deep cryosurgical procedures (deep freezing after anesthesia), my body’s healing abilities were non-existent.  During this search, at a time when I had open, oozing wounds, an opportunity arose to try an herbal mixture with a base of shea butter to aide in healing.  The herb that was infused in the shea butter was cannabis. After just 7 days, a wound that resisted healing for 8 weeks was now on it’s way to a full healing.

 




The above pictures are the day of surgery, 8 weeks after surgery, 5 days after starting cannabis cream and finally, 2 weeks after beginning cannabis cream and totally healed.

During this time, my Dermatologist noticed 5 areas on my face that were highly suspicious for being BCC (basal cell carcinoma). Unfortunately, the treatment for the black beast opens the door and turns on the light switch for BCC and SCC (squamous cell carcinoma) to flourish. And I’ve had them all. My Doctor wanted me to use a highly toxic cream to remove them from my face. Now, again, those of you that already know me, know that I work in a very busy medical practice, tending to hundreds of patients a week. And I am also sure that most of you have seen the vivid horrible results of using this cream. Recently, a picture of a girl who used it went viral on social media to raise awareness of the dangers of the sun.  My resounding response to this suggested treatment was NO WAY.  The resulting appearance devastation was one factor in my negative response, cemented by the possibility of local lesion infection. Being highly analytical, I thought that maybe, if the Shea butter herbal mixture could perform so spectacularly on an open wound, maybe it could help heal the lesions on my face.  I shared this thought with my Doctor and she agreed to postpone intervention until we could analyze the result of using this cream for a period of time. As previously stated, I have 5 areas on my face ranging from pea sized to quarter sized lesions. The most problematic being the quarter sized lesion on my right cheek. It was very red, very tender to touch and down right ugly. So, I started using this Shea butter cream on my face once a day.  After application I would vigorously massage the cream into the lesion. As I sit here writing this journal, I am now 5 months into using the cream. It has not cured these areas or made them disappear, however, the quarter- sized area on my right cheek has decreased in size. It is now half the size of a dime and no longer red and angry.  

I use this as an example of my own isolated experience, as my own reality. I am not suggesting that conventional treatment is out of the question. But if I can postpone invasive surgical procedures for as long as possible, I feel I have achieved my goal.

It is with this lone experience and it’s surprising result that initiated my quest for learning more about what herbs, the gifts of the earth, could offer. After purchasing at least 10 books by different authors to see if there was a common knowledge base and common thought process, I started to identify similar stories and similar techniques by all of the renowned herbalists that I studied. To be sure, as is true in any quest for knowledge, there are central facts that hold fast and then there are fringe ideas that to most would make a conventional thinker shake her head. Even the fringe ideas can merit examination in the full spectrum of investigation. Although foreign to most of our conventional educational base, the powers of earth’s gifts in theory and in essence must be considered.

At this point, definitions of the available herbal preparations would be helpful to the reader.  A tincture is an alcohol based liquid derived from steeping herbs in the alcohol for an extended period of time. There are many different ratios for this formula. Most however are made with 100 proof vodka. These combinations are achieved mathematically via W/V (weight by volume) calculations. Dried herbs are made with a 1:4 W/V and fresh herbs are made with a 1:2 W/V.

To the lay -person this might seem like an insurmountable task. It just so happens though that I have been actively working with W/V formulas for the last 35 years. All of the allergy medications that I make for my patients and use to test my patients are achieved using the W/V methodology.  So this portion of my investigation was actually a relief and relatively easy to achieve. Herbal oil is achieved by steeping herbs in organic oils for a set period of time. The oils used can be olive oil, almond oil or coconut oil.  This is usually a 1:1 W/V meaning equal amounts of herbs and oil. Each herb used in oil will treat a very specific symptom. Herbal remedies do not strive to cure a disease but instead treat the symptoms caused by a disease to allow the body to heal itself. As with oils, creams can also be infused with herbs and applied to the skin for surface treatment.



After investing a substantial amount of money on books and after careful reading and note taking, I decided to enter the next level of investigation. I happened on what felt like a vivid sign that maybe my investigation was meant to be. While vacationing on Martha’s Vineyard, as we do often while enjoying the beauty of the island, we were also enjoying the goods and crafts at a local farmers market. It was a gorgeous day and happily we tried foods and bought flowers and hand made goods by the local artisans. A lovely woman from the island manned the last display I visited. She was selling herbal tinctures, oils and selling books. I quickly scooped up the books as she was closing her booth for the day. When I turned the books over to read about the nationally renowned author, I realized that the lovely woman was the author of the books and the maker of the tinctures and oils. She graciously signed the books and I departed without buying any of the tinctures or oils as she had already packed them in anticipation of her departure.

This happened on the first day of a week long vacation which gave me 7 days to study in depth the contents of her books and her knowledge of the plants that she harvests on the Vineyard.  After leaving the island, I was wishing that I had purchased some of her tinctures and oils and luckily noticed that she had a website.

Again, for those of you who don’t know me, I am a realist at heart and somewhat of a doubting Thomas. I need things to be proven to me before I will throw myself head first into an endeavor.  That said, I strongly felt that this was something that I wanted and yes, needed to explore. If by any stretch of the imagination it could provide the knowledge and information useful in alleviating just one side effect of the toxins still residing in my body, I would invest my time and resources to take it to the next level of investigation.  So, I purchased 2 dropper vials of tincture, one to aid in better sleep and one for the reduction of stress. I also ordered a tin of herbal tea to be used at night as a calmative.  Each dropper vial contained 2 ounces of tincture and the container of tea was a combination of herbs and dried flowers that weighed 1.75 ounces. The cost of these three products was $92.00. I include the cost to give one piece of evidence that helped me to decide to produce these products myself.

2 weeks after placing my Internet order for the tinctures and tea it arrived safe and sound. To say that I was anxious to try it is a huge understatement. So after dinner and the cleanup were completed I made a cup of tea with the herbal mixture and followed the directions on the bottle of tincture for more restful sleep.  As any other post menopausal woman, from time to time I suffer from insomnia and to me this would be the easiest symptom to be able to evaluate the efficacy of the nighttime tincture. Again, I had no pre-conceived conclusions regarding the strength and efficacy of this tincture.

I continued to read as I do most evenings until about a half hour after I had taken the tincture in a small amount of water, when my eyes started to be very heavy. I thought to myself that it was all in my head. Well, it was not in my head. I was very drowsy and knew that I needed to go to bed. I slept through the night and awoke well rested. Thinking that this was either a placebo effect or just my force of will, I tried it again the next night. Yep, that’s right, 30 minutes after taking the tincture I needed to go to bed. I have only taken this tincture a few times since, when I felt I needed it, but each and every time it worked the exact same way.  The tea mixture is delicious and also works well as a calmative after a busy day.

After having the exact same response to the tincture with each use, I thought that this might be a viable remedy and a basis for further study. I started to research herbs and their actions and indications and developed a list of the most beneficial products for the symptoms I was studying, narrowing the list down to 23 herbs.  I placed an order for these herbs from Mountain Rose Herbal website where all of their products are certified organic. This was a substantial expense but I knew that if I wanted to grow in my herbal journey that it was necessary. To give you a rough idea of the cost, it is as follows: herbs were approximately $300.00, the ball jars were $22.00 and the vodka was $16.99 per bottle, I purchased 10 bottles. So approximately $500.00 paid for all the supplies and herbs etc. So, ok…. let’s play with math for a moment. Keep in mind that the 2 bottles of tincture and the loose tea cost $92.00.





To make the tincture with the price of the herb and the price of the alcohol using the most expensive herb and the least expensive herb I came to the average price per half ounce, which is usually the amount, used in herbal mixtures. The average cost per half ounce is $0.87.  When you compare the price of a 2ounce vial of tincture, which averages $30.00, the effort to make your own is well worth the time taken. Not to mention, I have a great need to control the ingredients and the process of production. In doing it myself I know that the jars have been sterilized, that the alcohol is 100 proof and that aseptic technique has been maintained throughout the preparation at every step.  It took approximately 6 hours to make the herbal mixtures, this included clean up time.  These 23 herbal tinctures will be combined depending on their specific actions to treat a whole host of symptoms from headaches to muscle soreness, fatigue, insomnia, arthritic pain and focus of thought. Again, this will be done slowly and the dose will be started very low and increased in very small amounts until the effective dose is achieved. I have purchased these individual herbs with the health and wellness of my family in mind. I have taken meticulous notes and have written a journal that chronicles the supplies, suppliers, the herb’s name both scientific and popular name. I have noted each herb’s use and conditions it could benefit. I have also been very selective as to what I would delve into. Having a very good sense of what I am comfortable doing and uncomfortable with, I will not cross my internal line. So I have stayed away from anything that affects the heart or blood pressure. I still believe that conventional medications must be used for these.

While being introspective, I find that I regret that I am now 63. Not because I miss my youth because I don’t.  The advancing years brings to reality the finite time left to learn and expand my knowledge base. If I long for youth, it is merely to have the opportunity and the time necessary to examine the miracles of the body and the bounty of Mother Earth.

I will keep you posted on the tinctures completion, which will be approximately around Halloween. And will report the efficacy of this endeavor. This is undertaken with the hope that if it is worthwhile for the family, that with my notes, this art will endure after I have left this earth.








Thursday, August 20, 2015

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

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

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

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

I WILL NEVER QUIT !!!!

Sunday, December 14, 2014

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.

Friday, November 21, 2014

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.

Monday, June 23, 2014

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.