A Bike Ride...Shall We?

                            

I sit her updating my blog, not even knowing how Im going to get all thats in my head to my fingers to the keyboard. Im all over the place. Totally overwhelmed and not very in control like my typical Virgo self. My mind is constantly running, you have to do this and you have to do that. The fear is causing the mind to run that much faster. The fear of letting my body, my loved ones, fellow survivors, and ultimately my life down is taking over. But not in a motivating type of way, more in a woah Im buried way too deep so why not allow myself to fall a little deeper kinda way. The self criticism and perfection bullshit is so overwhelming that it is preventing me from doing what I need to do for my self.....which in turn causes that much more self criticism and destruction. I thought back and remembered how on the ball I was, both emotionally and physically I was ready to do whatever I needed to keep this cancer at bay. Now it wasn't the case. I think about it but Im not doing it.  I spiraled out of control and was beating myself up every time I took a step backwards. The harder I was on myself the harder it was to stay on track. Actually I did the exact opposite. Ate toxic foods and beat myself up so much emotionally. Instead of affirmations it became negative thinking and putting myself down. Instead of cucumbers and celery it became pizza and sweets. Knowing I was stronger than this, I beat myself up that much more and the vicious cycle continued.

It dawned on me, quite a ways back, that Im just sick and tired of having to deal with all that cancer brings for the past six years and Im tired. Actually Im exhausted. In the beginning it was a new challenge...I hopped on the journey like it was a new bicycle I was learning to ride. Once I became educated on diet and emotional effects on cancer I weaved in and out of every natural aspect there was on the cancer path. I felt so invigorated and healthy that peddling that bike became addicting and second nature. My skin was glowing, my hair was shiny and I felt as beautiful and healthy as ever. I think of my many health and emotional challenges as hills on my bike ride journey, with that ultimate goal of finishing the course and getting the medal of "optimum health and happiness." As hard as they were I peddled steady and slow, sweating profusely but I got up those "hills." The hills came more frequently and as much as I sighed when I saw them I continued to do my steady peddle upward. Even if I had to get off the bike for a minute, breathe and get back on I made it up the hill. My face was blotchy and red, my hair was wet and in knots and my muscles were trembling from being overexerted. Other hills that popped out of no where, even though not as large as some of the hills I endured, were dreaded. Despite biking a hill 10x larger before like a champ, this moderately sized hill didn't even seem approachable. Self criticism came into play, "Lisa, you biked hills much bigger then this. what are you becoming weak? you giving up? You will never get the medal" The more hills the more I said I cant, yet I continued to peddle slowly and get myself up what seemed the never ending hills. The emotional stress and being so hard on myself can be thought of the weather on my bike course taking a turn for the worst. Rain, wind, lightning and complete darkness took over the course. Its cold, my body hurts, im weak and I cant look at one more damn hill and I don't give a damn about that medal. I decide to turn around and go down hill and forget about the medal.

After all, its easier to go downhill, right? As I turned around on the course, I felt a sense of relief. Nothing to be overwhelmed about anymore. Who cares about the medal. Ill just hope for the best and hope that this path takes me to the right place. I went down hill and the wheels spun out of control. I felt like I had no control over the bike. Steering the bike was my only sense of control. My leg movements were as if I had no muscles at all and they were just limbs being wound up like a jack in the box.  As much as I tried to keep on course the bike had a mind of its own as it went down hill the speed of the bike got that much faster causing zero control. It hit a large rock and I went flying. Muddy, soaked, cold, and with ripped clothes I laid there and looked down to a bloody broken limb and wished I never turned around and went "down hill." This is a hell of a lot worse then trembling muscles. My body hurts even more and the weakness is now more heightened . All that effort that I put in staying the course, hill after hill, I gave up to have a far more worse  experience. Where do I go from here? Sit here and feel sorry for myself or tend to my broken limb, take in the beauty on the course and get back on my bike and go uphill? Good news is that Im very familiar with the course and enjoy the feeling and benefits of going up hill much more. Im pretty bruised up but I surely plan on getting on that very first trail again. Im going to take it slow and rather than bombard myself with every little aspect of getting the medal, I will start with only a few strategies and add as I ride. Also, I realized (hello Im a therapist and an analyzer to the fullest) that affirmations rather then criticisms will get me a lot further and not make me want to throw in the towel and quit again. I mean after all I should give myself some credit, this month is year six and I put in a hell of an effort. Im still here with a stage IV melanoma diagnosis, thats pretty good and I for sure know its not luck. Its pure science. Nutrition, emotional and stress management and unloading anything toxic is critical to reverse cancer. 

So as I forewarned at the start of this post, I am all over the place and have been for quite sometime. Not doing what I KNOW I need to in order to shrink and keep these tumors away. I continue to not be a fan of conventional drugs and cancer treatment. The zelboraf did reduce many of my tumors but with horrible side effects. I reduced the dose and with no surprise, the tumors started getting larger again. I don't really trust the drug and my gut doesn't feel very good about it all. However, If the tumors continue to get bigger and cause me pain or the inability to eat, that would be problematic. So here I am for everyone to read, that I will embark on the journey that makes me feel amazing and kills cancer cells. That is the trail of lots of juicing, greens, veggies, nuts grains and berries. I will take all my supplements, including my mistletoe injections, biweekly vitamin infusions and at least five scoops of cellect daily to start. To not overwhelm myself I will add the other strategies of gaining   optimum health and wellness slowly, week by week. I will not focus on how easy the bike ride used to be. I will live in the now and start with just getting back on my bike, keeping in mind that invigorating feeling of my skin glowing and the wind blowing through my hair.


It is Michael Burkhardt, an inspirational and incredible fellow cancer warrior and friend, who recently lost his battle, that motivates me to get back on track and take nothing for granted. With his beautiful wife, Eden, and their two adorable twin boys, Gavin and Reid, beside him, it was eight years that Michael endured brain cancer and he did it with humor and dignity. A cute little boy from the neighborhood, known for his red hair and freckles. One of the many children amongst the neighborhood kids. Graduated and was good friends with my oldest brother. My mother very good friends with Michael's mother. Michael and I re-connecting years later over cancer bullshit. We offered each other pointers, tips and encouragement. We often vented via text about how much cancer sucks and we wish we can get on with our lives.  This summer our lives so parallel....both in lots of pain, pretty much unable to do much of anything but yet both still positive and with the will to fight. On my roughest days, despite going through his own horrid stuff, he always took the time to write me..... Always took the time to think of others...

      "Hey! The pain was better, then got far worse. I am good and out of it now." In and out of consciousness. How are you? Have you been home or still at the hospital? I thought my mom said you were home. Hope so. Has your pain been managed well-hows the recovery been? You're a rockstar-been thinking about you and our crazy stories running sort of parallel lately..."

" Wow Lisa, what you've been going through sounds brutal. We all take so much for granted, until we're sick or hurting and all we want is our health back. It's so true when it comes to things like what you're going through. Whats a little back pain when your shoulder has been torturing you. People eat like shit, drink, smoke cigs, etc as if their health will always be there. It all changes when your ife is threatenend...."

         "Hi Lisa-I just gave my mom the news of my MRI yesterday and she told me you were getting    one  today and why. Im so sorry you have been in such pain and have been through so much lately. I hope today reveals the best news possible for you and that anything that follows is as speedy and painless recovery as possible. sending lots of love to my fellow warrior..."

"I hope you feel better and im always available if you want to shoot the shit or just vent with someone who's with you through our shit. Lots of love."

 There is such a thing as a cancer connection. When someone in your social network, whether indirectly or directly, has cancer along with you, there is an instant connection and a bond. Mike and I had that. I knew he was not feeling well and his cancer was progressing, but I was in complete denial that he would leave us. Hearing that news last week was that kick to the stomach when you are already hurled up on the floor in pain. Hit way too close to home. Stirred up way too much for me. Seeing the hundreds and hundreds of people waiting online for hours in the pouring rain to pay their respects for Michael was so moving it left me with goosebumps. It was uplifting and just showed how much he was loved and what a big footprint he left not only in my life but in this world. 

So thanks to Michael Burkhardt, I am motivated to get biking up that hill again. I leave you with his beautiful words....

"If you and your loved ones have their health, very little else actually matters. Its hard to fully appreciate that until your life has been threatened. Be good to yourselves. You have only one body, one vessel, to carry your soul for a lifetime." - Michael Burkhardt

Please support Michael's beautiful family in anyway you can.
http://www.youcaring.com/medical-fundraiser/michael-eden-burkhardt-love-and-support-fund/124285


I will post again soon and will be sure to share my strategies that I use long my bike ride. Life is short people, don't take what you have right in front of you for granted. Its so easy to be negative, think about all the positive in your life. There is always someone worse off and you never know what tomorrow will bring. 

  Much Peace and Love, 

     Lisa

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 about...do 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."

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

 



BEER TASTING PARTY
GOOD*TIMES

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.

http://ccmac.org/

http://www.run-li.com/2011/

Much Love,

LiSa

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,

Lisa

Thankful is an Understatement

 

 
Its crazy how much can happen in two weeks time.  The very day of my last blog post, I went to my niece Liliana's first birthday. She and Alexia looked adorable in their pink poofy party dresses. Are you kidding me? This blown up picture of Lily is way too cute. Frog centerpieces and frog fondant cake? adorable.  Oooh I could make a cake like that! Cute idea. I wish Mike could be here to hang out but I understand he has to work. Wow, I feel weird...very hyper. Maybe I had too much coffee this morning. All these kids are adorable....wow these families are really growing. Where is my mom? I'll leave her be...she is always chit chatting. Ok, what the hell is going on? I have a pounding headache that I now can feel in my chest. I'll sit with my cousins. Guys I feel really weird....pounding headache. Just breathe said Brianna. Im trying but this headache is like nothing I ever felt before. Where is Kevin? He should be here any minute.  Should I pick him up? It will probably be faster for him to just walk here. I don't feel well to drive. Wow I am so hyper. My father came over to snap a pic I told him what was going on and that I was going down. Dad, I think Im going to faint.  He took me right outside to get me in the car to take me home. Oh, good!! Kevin! Let me lean on your shoulder for a minute. Kev, I feel really weird....something is wrong. Dad, pull up....I have to throw up..don't want people to see. Something is wrong dad....shit a tumor on the brain. No Lisa, don't say that its probably just a virus. Holy shit....is this what people experience when they get migraines? This is terrible. I feel bad if people actually experience these.   Oh no my dad is missing his granddaughter's first birthday. Not okay. He must go back right now. Anthony and Brianna could stay with me. Holy shit I have to throw up. My poor cousins, they must be freaken out. Thank God they are here. This is bad...what is happening. Jeez, the light is killing my eyes. Oh no I need to throw up again. I cant even talk. I'm just going to sit here with my eyes closed. Poor Brianna and Anthony.  I want to talk with them but cant even think straight. Door opening......who is it? Yes! Mike is home. That is so comforting. Babe, I really don't feel well. Really sick. Maybe I have a virus....my dad said he had this last week. Ok I can sleep. Just stay calm and keep your eyes closed.  Pain killer didn't help the pain. Holy shit what is happening? I never experienced pain at this intensity before. I think I need to go to the ER. No I don't feel like waiting there. It will pass. Wow its 6am already. Mike has to go to work. I love when he tucks me in with more blankets and kisses my forehead before he leaves. Comforting....we will get through this. Thank God my parents are here. I need to get my ass to the ER. My parents will update Mike.  I'm not changing. Who cares.....slippers will be just fine. Woah, there are so many lights and my eyes hurt. My poor parents. I hate pain meds but please give me something. I need relief. Yes triage person, history of melanoma... that's correct. Doctor will be in shortly. Were taking you for some tests. 

Brain MRI shows tumor on right side of brain. It hemorrhaged. Its good its on the right side of the brain. Doesn't deal with coordination.  It has to come out. Ill need surgery.  Mom, did you call Mike? Let him know. We are transferring you to Northshore Manhassett. You will be admitted. Okay, good I can request Dr Beg. He will tell me the right place to go.  Let me text Erica and let her know I wont be in work for a little while. Okay the pain is better. Holy shit I need brain surgery. What surgeon is best? Shit, Stephie had so many complications with her brain surgery. Im scared. Mom, contact Mike B please. I want to go to NYC hospital. Dad, we need to research. Oh boy this is really happening. Just another bump in the road Li, you will get through this.  Ok, I need to take a lot of cellect and supplements from Switzerland. Tumeric is good for inflammation. I'll take a lot before surgery. Mom, please call Fred and Dr Rau to inform them. Dr Rau will let me know what to do after surgery to minimize side effects. Does this have something to do with myofascia release treatment? Is this related to my shoulder pain? Mom, please call and schedule a vitamin infusion for every day next week. Lets replenish the good stuff.

We decided on NY Columbia Presbyterian Cornell Weill. With some minor transportation coordination issues, I finally was transferred to Cornell Weill by ambulance on Tuesday. My mom by my side is so comforting. Ugh she must be so worried. Despite it being a holiday, I was fortunate enough for my surgery to be scheduled on Wednesday. I'm so incredibly thankful for my quite extensive clan of family and friends. I feel the love and positive vibes. I really do. Like going through my body like electricity. We have to pray to Madonna Del Stella and Padre Pio. They will comfort me.  It makes it easier in time of crisis when you have unconditional love and support. I appreciate the visits and that sense of comfort having those people who care about me around. Grandma is so with me... I feel her presence and she will get me through this. 

Tears....F@*k! How did this happen. I was doing so good and such a good path...felt like things were reversing and getting better. I'm angry. This shouldn't be happening. Not with cellect, not with Switzerland, not with all the good I have been doing for my body. People are going to have their comments. See that holistic stuff doesn't work. Who cares Lisa. Bottom line is you know you feel better and will be okay.  Tears rolling down cheek. Don't worry Lisa. We love you. You will get through this. Stop tearing Lisa you have to be strong for everyone. You cry they cry. Oh boy! everyone looks so worried. Don't worry everyone i will be okay. Ugh. Now Thanksgiving is ruined... I'm here.. Last year I was in Switzerland, now in the hospital for surgery. Wow we have a lot to be thankful for. Yes, I can do Black Friday shopping. Mike bought the IPAD. Shopping on morphine....dangerous. Mike is it okay if I shop? Sure Li, its fine. Thanks babe.

Seriously this is the neurological resident? He looks like an elf of some sort."You have a brain tumor." Probably related to the melanoma. Its on a good side. We will cut the bone take it out and then staple the incision closed. We will shave a little piece of your hair and the incision will be right here in an "s" shape. No!! my hair!!! Shit! How much hair? Okay not the end of the world. I look good in hats. I'll blossom style it for awhile. Ok obviously cuter hats then Blossom. Fedora...yeah.

We are going to insert Brachytherapy in your brain once we get the tumor out. Brachy..what? They are radiation beads that will stay in forever. The radiation frequency will diminish in three months time. Very calmly I said I'm not getting that. My dad said we will look into it. I said absolutely not getting radiation pellets inserted in my head for life. Nothing about that sounds okay or my speed. Oh good Mike agrees. Elf man said he will have to see if its okay with Dr Schwartz. Made it clear that it was not an option for radiation pellets to go in my head. My body. My decision.

Tomorrow morning is the surgery. Mom is here with me and Mike will come back in the morning with my dad. I have to wash my hair. Oh no! When will be the next time i could get a blow out? Wow Im out  of it. I guess the pain meds. I hate how my mother cant sleep well here. Surgery was postponed till 4pm. Oh great. Mike and dad will come in a little. Hour later nurse says I need to get a brain MRI then right into surgery. Make up your mind people. Buzzzzz!! No my hair!! Tears. Mom is it bad? No Li its only a little. Oh shit this is really happening. Ok Lisa, after this MRI you will go into OR. Just sign this....says craniotomy on left side with placement of brachytherapy. Very calmly....no thats not correct. I already explained to Dr. Schwartz and elf man that I am not getting bracytherapy and the surgery is on the right side. Come on people. This is serious. Focus.... think before you speak. Okay I will cross it out. No please go fill out a new form correctly. Then I will sign. .

Five hours later, pain is unbearable. Im cold. Cant breathe. Is there a tube around my neck? What the hell is going on I should feel no pain. This is horrific. Where are my parents and mike? Excuse me I cant breathe and I feel a knife going through my brain. You just had brain surgery. No shit but I should not be feeling such intense pain. We are going to try and find your family. Where are they? Please find them quick. Cover me. I'm cold. Can i please have some water. Oh thank god!! Mike. Please can I have a drink. Ice chips with mango coconut water? This is the best thing Ive eaten in awhile. I can live off this. Pain is unbearable. Please get nurse. I need something.

There is a wave in my head. Oh no! please tell me that I don't have fluid on the brain. Why do I feel like a wave is going back and forth in my head. Its okay that's normal. They washed your head and probably got water in your ears. This is a very strange feeling. Ugh this pain. Its 150 on a scale from 1 to 10. We gave you everything. Okay we will get the pain doctors. Hurry please. Stabbing  pain that  is way too unbearable. Morphine pump is going to be administered. I hate it but I need to manage the pain. Okay this is getting better. Headache is getting better. Try and sleep. More ice chips with mango water please. This wave is getting old. This head wrap is too tight. I don't care I'm pulling off. Please Mike loosen it. They wont even know. That's why I have this pain. Thank you!!! That is so much better. They had it wrapped it so freaken tight.

Wave is gone. Pain is tolerable. Its Thanksgiving and I have so many people here who love me. I feel pretty good. I don't feel like I had brain surgery. Makeup is on, all washed up, walking around by myself, feel really good. Thanks to my aunts and mom in law some Thanksgiving dinner in the hospital. Stuffed mushrooms and pastina. Yum. I'm doing so well they could move me out of ICU into stepdown. Pain is not bad anymore. Stop using the morphine pump....you don't need it....poison for the body. Washed up, leggings on, makeup on, leopard scarf. jewelry on and comfy blazer. I feel good and want to go home. But you had brain surgery three days ago. That's okay. I feel great and want to go home. We will check with Dr Schwartz. Thank you.

Emily and Dave!! I am so fortunate for my amazing friends. Ugh I feel bad that they took the trip here before the long trek back to Boston. But Emilina is so comforting. Happy to just have them here. Pretty flowers. They are always on the road....don't know how they do it. But truly thankful to have them here. Thank goodness this brain saga didnt happen when we were visiting them last week. Spleen surgery was when we were visiting them in Boston.

Good news! Friday night and I'm going home. Not only am I going home but I feel so good. Like nothing happened. I passed all Mike's OT tests.....I can text, walk, I have strength, I know where I am and am totally with it. Yes, home it is!! Cant wait for my own bed and just to be with Mike and cuddly Marli. So now what? Nothing really. We will take off the head wrap.  Oh no!! so nerve racking. Don't worry Dr. Schwartz does a great job. You wont be able to tell. Mike I don't want you to see. Li, don't be silly. Okay here goes. Snip Snip. That's it? You cant even tell. My hair covers it. whew! Yay! Lets take a picture. Why is everything going so smoothly? We will get you an MRI and then you can leave. Take these three medications, follow up with local oncologists and get staples removed in ten days. Wow I can go back to work on Monday then. Lets pack up this room....wow we accumulated a lot over a week. Ugh that MRI was so loud and annoying. All looks good. Brains clear. You can go home. Do you want a wheel chair? No. That's silly....I'm totally fine to walk. I'm not one for this whole patient thing.

Home sweet home. Wow its spotless. Not surprising...that's Mike.  I love our home. So cozy. Just where I want to be. I know I have to rest but I love visitors. Everyone is so kind. I have such good people in my life. Lucky girl for sure. Marli!!!!! Oh no she is sick. Maybe she ate too much. She probably is out of sorts and missed us. Dogs sense things.

The weekend was for sure busy with company, delicious food, get well gifts, puzzling, banangrams, lots of texting, movies, Dexter and Homeland and relaxing.

I'm okay to go back to work. I feel fine. I will take one more day to relax but getting restless and antsy. We have an audit coming up and i want to be up to date. I want to check in with the boys. It will be good to get back. I'm so appreciative for my supportive co-workers. Wow, we have been through a lot together. Erica, has helped me so much. Truly appreciative.

Fred called. Believes it is related to myofascia release treatment releasing the pathway causing hemorrhage. Cornell Weill called...the tumor is related to melanoma. No shit people! They suggest chemo and radiation. Very calmy said okay but no thank you. No pathology report is in yet. So how do you know its related to melanoma and why are you suggesting deadly treatments?  Please just send me my pathology report when it gets in. I will not be following up at Cornell Weill. I will continue my own path. Thank you for your time and assistance though. Switzerland is ready and scheduled for mid February.

By Tuesday it settled in.....something strange happened. This was meant to happen. Its like a demon was lifted.  Just like my spleen filled with dead cancer had to come out, this blocked energy in my head had to be released. I feel so bizarrely amazing. Its not like I'm doped up on pain meds either. Ive been taking 1/2 a pain killer a day for shoulder pain, which is nothing .My emotions cant tolerate anymore than that. They make you sad and cry. Not worth it.  

Euphoria?  A state of intense happiness and self-confidence. That is what I'm feeling. I feel so free, clear headed, loved, confidant, stress free, and like I didn't undergo any surgery at all. I have no pain on my head and sleep on the incision side like there is nothing there. I have been so productive, wired, clear, and like I can do anything and everything that I want. Not foggy and out of it like I was for some months now. Something was released. I went back to work on Tuesday and had the most productive work week that I had in a really long time. Writing paperwork was nothing. I was like a machine. Tasks have been so easy and manageable. I put up Christmas Thursday before work all by myself. The house looks adorable. I just love Chirstmas and decorating. I know its crazy.  I feel vulnerable in a way by even writing this.... But something spiritual went on these past two weeks and all that went on was just another part of the healing -one -step closer- to- remission- process. Im at peace, relaxed, and just plain old focused. Thank you for all those positive vibes, prayers and good thoughts. I truly believe that it is that supportive pack like energy and love that is bludgering my cancer to death.

Not sure how long euphoric feeling will last but I'm going to enjoy it when it's here.


So much love and thanks.

Love Always,

LiSa