Monday, October 28, 2013

This Too Shall Pass

Well here I am, months and months later, attempting to jot down some of my thoughts. The darkness that took over the last five months or so subconsciously left me avoidant and with serious writers block. Perhaps I didn’t want to burden, or should I say worry, people with the fact that my life was slipping away. Perhaps I like to write when I know there is a happy ending and I am able to not only offer fellow warriors hope but to ensure family, friends, and those that support me indirectly that I WILL be okay. So Im here to attempt to update the best I can but most importantly I want to calm those thoughts of “what happened to Lisa?", “Is she alive?”, “Why has she not posted an update?"

Lots happened since my last post about mushroom treatment. First off, whether or not it was an anti-cancerous effect, the mushroom liquid drops caused a serious inflammatory response. Due to this my right arm, which has given me difficulty since the beginning of the journey, was extremely painful. Since it has always been an issue I was dealing with, I figured that the tumor in the bone was responding to the treatment and hurting because of the inflammatory response that normally occurs before the tumors die. My arm became triple in size and a useless limb just hanging off the side of my body. The pain was so horrific that I had no choice to take pain killers in order to get through the day. In order to sleep I had to sit up or kneel on the coach with my face down. I went to several doctors and it was pretty much a consensus that I needed a very invasive shoulder replacement. As much as I tried to avoid it I no longer had a choice because the tumor broke through the bone and I was walking around with a broken and very painful limb for more than two months. The choice were amputation, (yup amputation! )or a shoulder replacement. I was told that I would probably not get much use out of the arm but at least the surgery, where they would replace my humerous bone with a metal prostetic would avoid the loss of the limb all together. So in June I had the shoulder replacement and all went well and the pain was better. Luckily two nerves that the doctor didn't think could be salvaged, which would result in very little movement, were able to be saved...a better prognosis for more mobility.

I still needed the pain killers though and stayed on the pain management regimen from the hospital... Which in hindsight was too much. I don't know if it was the anticipation of what the pain would be like after such a very serious invasive surgery or if I was just accustomed to doing anything to keep the horrid pain that I was use to from having a broken bone for so long, at bay. I took myself off the pain killers and I had at least a month or two of serious withdrawal symptoms. I felt like a junkie....depression, chills, shakes, fever, sweating, no appetite, a crave for sugary foods and body aches so bad I felt like I was hit by a mack truck. My once clean and non toxic body was flooded with the toxicity of opiates. I overcame it but it took a lot of mental power. Dealing with the withdrawal symptoms are worse then dealing with the pain of broken limbs or the aftermath of surgery.

Not right away but about 6-8 weeks after I started mushroom treatment, a lymph node or a tumor (different opinion wherever I went) in my stomach was acting up like crazy. First it was just unbearable pain, then it was the inability to eat due to the pain, and breathing was quite a task because of the way this relentless thorn was pushing into my diaphragm. Due to lack of oxygen I couldn't really walk or do much of anything without feeling winded. This put me in the hospital on various occasions. I lost 25 lbs in a month and half. I was frail, weak, and losing muscle by the hour from laying around as much as I was. The worst part of it all was I could not get down Cellect or ANY of my supplements. Mechanically, due to my inflamed gut, I couldn't keep anything down. The more I tried, the more I vomited. I eventually stopped trying. Eating healthy went out the window....anything too fibrous was unable to be digested and the nausea was so bad that very basic foods such as toast , crackers, and carbs became my diet. Even that had to be forced just to be sure I was getting some calories. I had no desire to eat and if it was up to me would have gone without eating in order to avoid the unbearable pain that would follow. The only thing that helped the stomach pain and allowed me to eat the little I did, was acupuncture. Within a month, bumps and lumps were popping up all over my skin. Like a creature of some sort.... visible and palpable lumps between my muscle and skin ... all over my back and stomach. Shit... This was bad.

So here I was at a completely vulnerable state, feeling like a stereotypical cancer patient for the first time...sick, weak, unable to take care of myself, bumps and lumps messing with my emotional state and body image, dwindling away to nothing, not able to do my holistic regimen that kept me alive the past five years, and not knowing if this was it...the end.

On a personal level I was dealing with a lot emotionally. So many things on so many levels. Its no secret that emotional stress feeds cancer. I needed to get better control over my emotions, something I used to do so well but I know was slipping. Throughout my cancer journey I worked full time. Fortunately, my place of employment and supervisor were always understanding of my journey and provided me with the flexibility where I was able to still get my treatment in with maintaining a full time job. I was able to perform my job and provide the kids I work with, with what they needed. It came to a point where I just couldn't give them what they needed. I was able to get to work but when you are in pain and your own life is at risk its hard to provide other people with emotional support and therapy. I only had so much energy and if it was used all on appointments and work, then what about the attention and energy that my husband and our household needed? If I didn't work I could rest during the day , be more of a help around the house, prepare food and be more energetic and present for quality time with Mike. I had to make a difficult decision, that I always toyed with and thought I stop working and not contribute to our household income? Do I provide another loss in these kids lives, who have been through such trauma and hardships? How do I leave my caseload and work to my supervisor and very dear friend to cover after all she has done for me over the years?

It no longer was a hard decision. It was the only decision. I had to focus on saving my life, both emotionally and physically. I stopped working sometime in September and initially it was lots of sleeping, like all day .....then I slowly incorporated all the appointments in my schedule. Unable to drive due to severe weakness my mother or father transported me to all my appointments. I averaged a blood transfusion once a month due to the severe anemia. it was unclear where I was losing blood from but the weakness and heart palpitations signaled when I was due for a fill up.

I always knew and believed that this very dark time would be a distant memory but I just didn't know how I was going to climb out of this very very deep hole that I was stuck in. I had to get out. My clutch...holistic medicine...what I have been preaching about and deep down know what has not only kept me alive but WILL get me to remission, was at this moment not an option. Was it depression or hopelessness that was subconsciously keeping me from my holistic regimen or was this really a mechanical issue due to these stupid lymph nodes/tumors in my stomach? Usually so strong and ready to do whatever I have to do was messing with my head. Was I given up or stuck at an impasse of finding the next treatment method?

At a loss to be able to keep down Cellect and holistic supplements, it was time to have some trust in conventional means. Always up on conventional melanoma treatments, I began to think which one would be the best to look into. Anti-pd1 or Braf mutation drug...Zelboraf. A very long thought process kept short, I chose to start with the drug that targets the Braf mutation (that about half of people with melanoma have). The drug is known to reduce or get rid of tumors. Seems like a no brainer, right? The downside is that in a majority of instances after months to a year the body builds a resistance and the tumors come back and most of the time with a vengeance. It's a tease and hopefulness to be followed with tragedy. But what if it did get rid of the tumors and I can take all my supplements, eat more of an alkaline based diet, and most importantly take Cellect again? After all it's obvious and quite clear that the holistic method is my friend and answer to my cancer. The progression of disease after my inability to do my holistic regimen was living proof that it was effective and my key to survival.

So here is my strategy... Take zelboraf pills, allow the tumors to shrink and bombard my body with the good stuff.... Juices, veggies, Cellect, meditation, and exercise.

So far I'm two weeks into the zelboraf pills and the tumors went down and some even disappeared. This in itself did wonders for my overall morale. I can eat with fairly no problems and went from barely eating to having a very good appetite. I am no longer nauseous and gasping for air. I have more oxygen and can walk further distances without feeling that I'm going to faint. I can drive myself around. Im off all pain medication other than a Motrin once or twice a day.

I can take supplements with no problem. There was some mental work with getting back into Cellect. With my emotions still being an issue there seemed to be some self sabotaging. "I'll start tomorrow" but never did it. Well today I took Cellect ( with a touch of nausea but was able to keep it down). Feeling better was all a result of taking zelboraf. The fear of resistance, what the pill is notorious for, for sure haunts me. My strategy makes complete sense though and I have a pretty good feeling about it.

Lets be honest I'm still stuck in that hole but I'm slowly making my way out where I can see light and don't feel like I'm suffocating to death. Physically I feel a hell of a lot better... It's the emotions that I have to work on. With reiki, meditation and spirituality my emotions will hopefully soon be at a better place. I no longer fear for my life and I maintain optimism that my life plan will pan out just as my heart always wanted it to. Life is not easy and boy does it have it's ups and downs. But there is always something to be happy about. Whether it is the beautiful fall foliage, fun loving memories, a breath taking sunset or recognizing that there is always a person dealing with a more tragic circumstance....there is always something to be optimistic about. As my grandmother and number one angel always said, "this too shall pass." Hopefully sooner than later but I know ..... "this too shall pass."

Saturday, March 23, 2013

A Little shrooms won't hurt....or will it?


I know I know…..I’ve been quite the blog update slacker. I know some people have been looking for an update and curious how things are in the world of Lisa. It means a lot and I appreciate your care and concern. My trip to Switzerland was of course emotional as it’s always a reminder that I am dealing with cancer. Not to mention I was not with Mike for Valentine’s day which obviously sucked. My mother is nothing but amazing and I love spending time with her. We downloaded a scrabble app and since we are both scrabble lovers we enjoyed passing some time with mother daughter scrabble. It was a constant light flurry the entire two weeks which was beautiful but not great to venture out in. Overall, it was successful as I got some good news regarding blood levels, tumors being benign and improvements in thermography and other tests. In regard to the tumors being benign, I have several bumps that have been worrying me but an ultrasound as well as other blood levels indicated that these were fibromas and not cancerous. I have a lot of lymph congestion causing the toxins and crap to have a difficult time getting out of my body. My tumor marker for S100 melanoma went up to 2.60 which definitely is not ideal. It could be much higher but ideally it needs to be 0.00. However, tumor markers are tricky as they are affected by lots of different variables such as inflammation, injury or surgery. Between my arm and my brain I’ve recently had all three.  Being that my fourth cancerversary was this past February, I showed some frustration and “okay, what the hell is taking so long” attitude toward Dr. Rau. All this money, supplementation, and effort….cure me already!!! If it was just that easy….

He understood my frustration and comforted me reminding me how strong my attitude is and that is important to keep that up. Which I do indeed, I was born a fighter and always had strength to overcome obstacles but hello? I am human and have my when the f**k is this going to be over days. So given my frustration and the klinik’s recent peeked interest with a mushroom treatment, Dr. Rau thought it would be worth a shot to put me on a new treatment to just add to the cancer killing regimen.  

So, I managed to bypass taking shrooms in my younger years but here I am at 30 experimenting with the poisonous white fungi. Yup, I said poisonous!!!! .Amanita Phalloides also known as the death cap mushroom resembles your average white edible mushroom yet it is rated amongst the most dangerous poisons found naturally. The substance has the potential to kill any cell in the body, both cancerous or healthy. So…..why am I taking this you wonder?

Chemist and immunologist in Germany have discovered a way to combine the toxic mushroom with an antibody. The antibody acts as a “cab” and transports the toxic mushroom to kill foreign organisms and cancer cells, yet overlooks the healthy cells. So the amanita basically latches onto a cancer cell protein called EpCam and very accurately kills the cancer within that cell. This is very well a death cap mushroom if taken alone however when it is combined with the antibody it leaves the healthy cancer cells alone and just targets the cancer cells.

Much research on amanita phalloides has been done in Germany and it has been found to be successful with colon, breast, and pancreatic cancer as well as Leukemia. Of course many of these studies were in petri dishes and on lab rats but it is being used more and more over in Europe, specifically Germany and Switzerland. Since it is an accumulating treatment, after six to eight weeks of placing ten drops of amanita four times a day on your tongue, they suspect flu like symptoms and just feeling crappy. These symptoms are supposed to indicate if the treatment is working… So I’m at week 5 and I will see what the next couple of weeks bring. Thus far I can’t pinpoint any side effects from the amanita. I just envision it burning away at any cancer cells in my body.

Funny story....My aunt struck conversation with this woman that she sees at the diner every so often and the woman mentioned that her father had stage IV melanomoma, was very sick and had tumors in his organs about 17 years ago. She said that something made him go on this mushroom treatment and after feeling pretty crappy for some time, tumors went away and he didnt have an issue with the melanoma again and 17 years later is still fine. Now that to me is a sign. I believe in all these types of little signs I get along the way. We have to believe and have faith.
Life goes on…..despite all the cancer bullshit….things have been going well. Mike’s birthday was a couple of weeks ago and we had a beer tasting party. I just LOVE themed parties with all the decorating and menu planning. Even better is having everyone together and enjoying the fun moments life has to offer. And this past week, my first nephew was born…. Dana and Anthony now have little boy, Anthony Amato Jr!!!!! Babies bring such joy to life and having another little one around is going to be nothing but exciting.
Did you ever?! Baby AJ



Thank you so much for the continued support. I know life goes on and gets crazy but I know some of you think of me here and there and believe me I feel that energy. For those of you who have been there for me throughout it all with calls, texts, and emails I truly appreciate it. The support really makes the fight that much easier and reminds you to not give up.

May are the activities to support melanoma. On May 5th we are running a 10k (6 miles) to support healing cancer biologically and on May 19th there is a 5k WALK  (3 miles) to support the fight against melanoma. Both are at Eisenhower Park in East Meadow.  The more people the more support. Let me know if you are interested.

Much Love,


Monday, January 21, 2013

Peeling the onion


2013. January. Time flies. The month of January and with February approaching usually is bittersweet for me. I can’t help but recall and visualize the initial “you have melanoma” moment and all that followed after it. Lymph node dissection…Dr Beg…caring bridge…learning who in
my life is really there for me…radiation…..grueling interferon…endless research…constant doctor appointments…lymphedema….huge arm wrap for a week plus to alleviate the fluid ...lymphedema treatments…arm sleeves daily….long sleeve shirts in the summers…loss of an insane amount of hair….weakness…sadness…frozen shoulder…physical therapy 3+ times a
week….hip pain…limping...”your cancer metastasized, now stage IV”…stomach pains …emergency splenectemy… Ipilimumab trial weeks before our  wedding… colitis …weakness… Hippocrates in Florida …cellect…trips to Paracelsus in Switzerland …  Dr. Rau…tumors melting away… tumors dying off and needing to be surgically removed….black salve ….insane pain…surviving the torment cancer has on your relationships…tears…learning all natural and holistic…self awareness…H wave machine…importance of breathing…daily enemas…green juices…eating all raw and organic…vitamin infusions three times a week… mistletoe shots…medicinal drinks, drops and pills every morning, afternoon and night…finding a balance between extreme diet vs. and “mostly healthy but okay to indulge” diet… weakness… pure exhaustion…extreme arm pain due to tumor in bone marrow…horrid headaches and vomiting… emergency craniotomy…feeling of euphoria…radio frequency ablation to arm tumor…incredible pain…incredible relief…
a completely different Lisa.

Thinking about all that I wrote above and even writing it made me realize just how much pure craziness and triumph I experienced. Coming to four years of being diagnosed with stage IV melanoma, I could happily say that it is no longer bittersweet for me. Being a survivor and feeling better than I ever have since I was diagnosed makes me completely ecstatic. I could easily dwell on the past and the “poor me” mentality but thats just not me… there is nothing I am bitter or angry about. Not only have I grown into a healthier, more appreciative, knowledgeable, down to earth person but so have Mike and my parents. There is nothing we take for granted. Sometimes I think people misunderstand the severity of stage IV melanoma. I should have been dead years ago if I was an average statistic. Its not dramatic antics, it’s the real deal. Melanoma at such a late stage rarely equals surviving, never mind feeling and looking better now then you did at he start of the diagnosis. It usually has a much more grim ending. If it wasn’t for cellect, the holistic remedies, unconditional love and my amazing ability to think positive I would NOT be here today. I’m so incredibly thankful for being blessed with being guided to the holistic path. Somehow, somewhere along the line the universe did anything against its power to turn me away from being blasted with chemo and other “cell killing” drugs.

I have been doing my best at reversing my biological chemistry and killing off those cancer cells for four years now….and I still have my work cut out for me. Its a life long journey. Which Im fortunate for, at least I will always be mindful of being healthy which will naturally lead to good things. If you look at my history…..the cancer initially stemmed in one lymph node…..after the “immune system killing” drug interferon and radiation, it spread like wildfire. I don’t think that is a coincidence that the cancer spread after being blasted with artificial unnatural immune system killing drugs.  After some time on cellect and other holistic means, some tumors melted away others got bigger. Those that got bigger were dying believe it or not. As cancer dies, it causes the tissue to expand and become inflamed; resulting in the pain I had in my stomach and head. The inflammation caused symptoms which resulted in emergency surgeries. Both the pathology results of my splenectemy and my craniotomy were necrotic aka DEAD cancer cells. WOW, I just realized in my last stream of consciousness like post, I never shared that the brain tumor was dead. As you could imagine this news made that euphoric feeling that more pronounced. 

Speaking of necrotic….several days before Christmas, I went to Mt Sinai for a procedure called radio active frequency for my shoulder. Basically I had such severe pain because the tumor in my bone marrow was getting larger resulting in my bone fracturing. Hellllloooo?!!! Bones breaking in general is painful. Them breaking slowly is hell!! It was an “in and out” four hour procedure where they stuck a probe into the tumor, guided by an scan of some sort, and pulsed it with radio active frequency. We chose this procedure because it had success in limiting pain and had a chance of killing the tumor. Well it wound up not being an in and out procedure for me. I was put under anesthesia, and similar to my brain surgery, woke up in such intense horrific horrible pain that was way too unbearable. Even the doctor and the anesthiologist were hurting seeing me in so much pain. It was so bad I had to be admitted for an unexpected night at the hospital for pain management. I was out the next day but prescribed with pain killers which I needed for the days following. However, the pain was worth every second. The tumor was dead and basically liquid that needed an outlet to be released. So that little pin hole in my skin where they stuck the probe oozed to the point where the huge bump on my shoulder went down 90%, resulting in a significant relief of my pain and reduction of the inflammation, therefore the tumor size. Lets just say no more pain killers and better arm movement.

Cancer is not something that just pops up one day….it brews in a body secretly for years. Once we have symptoms it pretty much has taken over. Of course it is best to be proactive and live a healthy and non toxic life but once you are diagnosed with cancer you have to bring your A game. It’s like peeling an onion….it takes many different strategies (layers) to get to the core of complete health and happiness. Nutritional replenishing, diet, support system, breathing, managing stress, meditation, spirituality/faith, exercise, power of love and touch, dealing with deep seeded emotional issues, power of positive thought and acceptance of self are my personal layers to deal with any sickness. In order to be completely healthy all of these layers, perhaps one by one or several at a time, need to be satisfied or “peeled back” to get to the core of the onion… HEALTH!

I love the feeling of loving life, having so much to smile and be thankful for. I completed my course of being a holistic health coach. I look forward to helping others who are struggling with an illness learn just how invigorating and life transforming some simple changes could be. Other than continuing to take care of myself and of course, my husband, I don’t have many other plans as of right now. I am currently in Florida with Mike and our besties, Em and Dave, and next month my mama and I are headed to Switzerland for a rejuvenating and healing trip at Paracelsus.

Its amazing how if you relax and take a seat on the ride of life, the universe will just take you just where you want to be.

Happy and Healthy 2013!! Wishing you Optimism, Smiles, and Success!!

Much love and xoxo’s,