I Cold Not Ask For More!

This week my wife and I celebrated our second wedding anniversary! Holly and I got married on the anniversary of our first date. Holly is everything that is good in life and just thinking about her always makes me smile.  Her eyes sparkle and when she smiles, it brightens up a room. Holly is the kindest and most caring person that I have ever met. She thinks of others before she thinks of herself and I truly believe that she is an Angel that God put on this Earth to save me.

I know many people say these same things about their "significant other" but in my case its true.When I met my wife I was in a terrible place. I was physically sick with Kidney Cancer and severe abdomen issues, as well as mentally drained and down trotted from dealing with a nasty ex-wife and other issues that had led me to hit rock bottom. I could barely afford to buy food and didn't know where my next dime was going to come from. It was a shitty situation.

 By showering me with compassion, affection, and unconditional love, Holly transformed me into a totally new person. She gave me the gifts of love and confidence. For the first time in a long time, I actually believed in myself and I became the type of person that not only she could be proud of but I could be proud of. She makes me want to be the best husband and father that anyone is capable of being.

The strength of our relationship is what helped me beat cancer for the second time in 2013 and my operation last month, as well as my on going recovery. As I have stated in my previous posts, there are many people going through the same battles I am and I urge you to find that person or people who give you the psychological toughness to keep fighting. It can be your significant other, your child(ren), a parent, or best friend. But by God, please find that person. It makes all the difference in the World.

The love my wife and I have for each other is the type of love we all have dreamed about finding. It just took 42 years for our paths to cross. I am the luckiest man in the world because I get to go to sleep and wake up with Holly every day for the rest of my life... and I could not ask for more! 

Keep Moving Forward

It's been about a month since my last blog post. In that post, I detailed my experience from Operation #5, my massive open wound, my psychological and physical struggles in the hospital. Today, I am still in the middle of my recovery. There are good days and bad days but I always keep in mind what John McEnroe said in his book, "You need to keep moving forward" whether its on the tennis court or in life.  I always keep repeating in my mind, "Keep Moving Forward".

At the end of November, the Wound Doctor from Florida Hospital approved me getting a "wound vac". This device would be connected to my abdomen (carried in a male pocket book) and it's purpose is to speed up the drainage from your wound so healthy tissue can form at a faster pace. This device was mostly a miracle machine, but also a curse. With this device, my wound shrunk by 75% over a three week period! The staff that works at the wound care section of the hospital had never seen anything like it. The bad, my skin took a beating. The itching and rashes, which lead to skin fungus was not pleasant. What was worse was the sloppy nurse in the wound care section of the hospital who caused my skin to blister because she didn't know how to properly put the film on! Of course, I had the comical situations of forgetting that I was attached to the device, for example, when I went to the bathroom in the middle of night and the device would go flying off of my night stand.

As my wound is in the process of healing, so is my skin, nerves, muscle, and tissues up and down my abdomen Over the last week, this has caused extreme pain up and down my abdomen, which radiates to my back. When I visited my surgeon, Dr. Mahan, he reminds me that as bad as this recovery has been for me, the alternative would have been at least 15 times worse. He went on to explain that if I did not have the operation when I did, my intestines would have failed  or burst and the infection would have spread in my body, and I would most likely be fighting for my life.

The bottom line is that I do have a longer road to recovery than I would like, and there will most likely be set backs, but I must always remember, "keep moving forward"!

The Toughest Battle

Operation # 5 took place on October 29th. There were signs leading up to the operation that this was going to be a battle. The low beams on our Mazda 3 that we were leaving for the kids to use in case we needed a favor needed to be fixed. We took it to a mechanic on the way to the hospital and after going to two places, someone was able to help us with only a half an hour to spare before we needed to be at the hospital. The second sign was in pre-op where I had a brand new nurse who did not know how to start an IV. With my wife and I in a silent panic, an experienced nurse finally came in. It was now off to the OR and all I kept thinking as "just wake up, whatever happens, the love that Holly and I have for each other will overcome anything".

The next thing I saw was my Angel walking into my room with a beautiful ornament and bracelet that would give me inspiration and I would need that inspiration because I would be staying for 8 of the longest days and nights of my life. Holly told me that the operation took over 5 hours and that no one had told her what was going on until the end. My condition was worse than anyone had thought. A portion of my intestines had failed due to the fact that the scar tissue had so badly overtaken them and stuck them to the medical mesh from previous operations and my abdomen wall. The first few nights were as expected, a lot of pain and thanking god for my morphine pump. In my mind, I was hoping to go home by Monday or Tuesday the latest. It already sucked that I was missing Evan's second Halloween.

One of Dr. Mahan's colleagues noticed that I was having excess drainage from the stables in my abdomen. He immediately cut one of the stables and had it packed with gauze. The next day, they had to cut open all of stables and I had an infected open wound that was 19 cm long and 3 cm deep and 4 cm wide. It not only that now I was under the care of the infectious wound doctors as well as Mahan, but the wound looked like the State of Florida and it was disgusting. I was now pumped with antibiotics, had my wounds redressed every 8 hours. I was in a terrible frame of mind with all of the medication, mostly lousy nursing care, I knew that I mentally needed to keep it together if I was going to make it to my goal of making it home. When I was loosing it, I quickly switched my thoughts to my wife and children. The true test came my last night in the hospital.

As the day went on I kept fidgeting. I could not lie still anymore. 8 nights of sleeping on my back or the lack of  sleeping with hot and cold sweats, nightmares of not waking up if I fell asleep were enough. It was like a whole army of ants made it in my pants! About 45 minutes before Holly came to visit with Evan and Alyssa, they finally gave me a Xanax. Ten minutes before they came, I was back to normal. However, after their visit, the anxiety got worse and I was wrongly given a large dose of Benadryl. I react poorly Benadryl and I thought they were going to need to put me in a straight jacket. The only thing that kept me partially sane was Holly and the thought of going home.

I received a double dose of Xanax and I was fine. Later that night, Dr. Mahan came to visit. I told him that I needed to go home tomorrow. I said I looked into it and that I could have a home nurse come and redress my bandages daily and that unless I was going to walk outside and drop dead from air hitting my well bandaged wound, I was out of there. I knew if I stayed there any longer I would get another infection from being in the hospital for so long or I would be in the psych ward.

 Dr. Mahan is agreed. He has amazing patient care and he saved my life. He told me the infection was already present in my digestive tract due to the failing of my intestines and if I had not gotten the operation and infection taken care of, my intestines would have failed within a few weeks and the infection could have lead to worse.  Two weeks after being released, I have made strides, but still have some way to go. My wound has healed enough so I can have a wound vac installed which will heal my wound in a month versus three. Dr. Mahan expects a full recovery and said that I could now hold Evan, which will be great therapy for me, Evan, and it will give Holly some much needed help.

This experience has taught me that I have wonderful children, with each child helping out in their own way. Coming and visiting me in the hospital cheered me up so much! Caitlin and Brandon driving me the week after to appointments since Holly had no sick days left. Caitlin watching Evan on a school night when my operation went longer than expected, and Alyssa. She spoke to me every day telling me how much she missed me and most of all the help she gave with Evan was amazing and so helpful to her Mom and I.  My parents, who called everyday to make sure I was okay and giving me advice on what to ask the doctors since I was so out of it. They have a lot on their plate with my Grandmother, but they always find a way to let you know they care. Finally, the love of my life and the angel that God sent me, Holly, showing me that our love has no bounds and is ever lasting.

Operation #5

I went for a second opinion to a local surgeon with a great reputation for being aggressive in handling abdomen complications from scar tissue build up, hernias, etc. My wife deserves all the credit for finding Dr. Mahan. The first thing Dr. Mahan noticed was that I had abdomen swelling, so he wanted me to get another CT Scan. However, instead of saying "let's see what we see on the scan.", he told us that he expected to see nothing on the scan because scar tissue can't really be detected on scans. A few days after my appointment, my pain go so bad that Dr. Mahan's nurse was able to move up and get me a stat appointment for my scan and got me in to see the Doctor within a days time. By the way, Angela is an excellent nurse who recognizes the importance of treating the patient like a person.

During my second appointment, Dr. Mahan did not hesitate to confirm that nothing was on my scan but that in one week, my abdomen looked more swollen than from when he saw me the week before. Dr. Mahan told me that it was time for Operation #5. Not that I want to be under the knife again but at this point, I have exhausted all other means of finding out what is wrong and Dr. Mahan is the first person to tell my wife and I that he could help us. Most important, he said it with confidence and no hesitation.

I know this is the right decision, but I have a fear of the unknown. The other four operations, I knew for the most part what they would find, a mass, hernias, another mass, hernia intertwined with my bowl, but I won't know what he found until I wake up. I also have a fear of not waking up. Of missing out on the next forty years with my wife after it took me until I was almost 43 to find her. Or watching my kids graduate from high school, college, weddings, teaching my 15 month old Evan about how great it is to be a Mets and Jets fan, and most importantly an American.

I know my fears are natural but by writing this blog post, they won't consume me. I know that I will be watched over by my angel, Holly and what ever challenges that we might face we will meet them and live a long and happy life together. After all, I'm hanging out with her for the rest of my life.

Felling Hopeless

Over the last few weeks, the scar tissue build up and whatever is going on in my abdomen has been getting worse. Along with the arthritis pain on both sides of my neck, which radiates through the back of my head like it's consistently being struck by lightning, it has been hard to be "normal" or at least act like my normal self. I am scheduled to go to Shands in a week but my wife, rightfully so, urged me to go back and see my primary physician, who told me during my last visit, that if my pain level got worse, or if there were any new symptoms before my Shands, visit to come back.

 My Primary Doctor is normally great when it comes to navigating my issues and referring me to the right specialists, so when she said to come back if needed, I figured she had some idea of Plan B if I showed up. The other day, I was scheduled to be her first appointment so I could get back to my new job right away. After going over the reasons why I was there with the nurse; adding to the never ending list my pissing issues. I was placed in a room where I sat and waited for 50 minutes! I was the first appointment mind you!! The Doctor finally came in, all hurried and asked why I was there and what she could do for me. I was a little shocked because I was waiting for her to start the conversation with, "Keith this is my Plan B since you are a mess." Why in the hell did she tell me to come back in two weeks if there was no Plan B!!

I did everything I could to not loose my cool. I left her office very frustrated and it sent me back into the mind set that there will never be a solution or a well thought out plan in order to help me get through a week without unbearable pain and I will be able to function without noticeable side effects of the medication I am on. Of course the next day I went to the pain doctor and saw the PA. I told her that I felt worse, mainly from the arthritis in my neck. She renewed my paid medication and looked at me like I had told her I felt "status quo". I understand more and more everyday why people with chronic pain feel hopeless.

Status Quo

I had my monthly visit to my Pain Doctor last week and on this particular visit I was seeing his PA. She is a very nice lady and I was giving her an update on how I have been feeling over the last month along with how I was functioning in my daily routines (work,being the #1 Dad & Husband) with the medications I was on. I reminded her that I was going to be going to Shands in Gainesville on September 22 in order to see what the next steps could be in dealing with my internal abdomen/scar tissue issues. I told her that there are days I feel fine with the medication and levels that I take and then there are some days that just suck and it feels like someone is trying to shove a baseball through my mid section, but I need to keep focused because kids need to eat, infants rocked to sleep, and bills need to be paid. She said, "OK, our goal is to keep you 'status quo' until the end of September".  What does it say about your life when a key person whom you rely on's goal is to keep you "status quo"?

I didn't know what to make of that statement. Has all of the effort I have been putting in over the last few years in my goal to live a normal life gone for not?  Sometimes I feel that certain medical personnel just want to write you more prescriptions to keep you on a constant high and do not care about the emotional or physical consequences it has on their patients. Are they putting any effort into finding a solution to my issues or is it I will pretend to care for 5 minutes, write your scripts, send you on your way, and most important,bill your insurance company?

Sometimes I feel that I am all alone on an island when it comes to dealing with medical professionals. They don't get that I don't want to spend my life on disability and that I want to have a productive life. I want them to realize that it takes all of my effort to ignore the constant pain that I feel through out the upper half of my body and go forward in accomplishing my tasks for the day. If I am going to be successful in my "Battle to Be Normal" then I need my medical team to be on the same page as me and sorry "status quo" will not suffice!  I'm not going to "settle" and I will keep fighting!

It's Hard to Stay Positive..But It's A Must

I was "surfing" the web yesterday and I went to an old client's website in order to see what they were up to and how one of my former colleagues, Linda, was doing.  Linda is a very nice woman who was working as the lone Project Manager in the Company. She was always positive, friendly, and could handle a ton of work.  During the last couple of months of my engagement, Linda was diagnosed with Osteosarcoma of the face or Bone Cancer. I could see that she tried to put her emotions on the "back burner" while she was making arrangements to go see a specialist in South Florida.

Before Linda left for her leave, she asked me for advice on how to deal with all the aspects of having cancer. I remember telling her that it was okay to be angry, sad, and that it will get frustrating even when loved ones and friends are just trying to help. The most important thing and the hardest thing to do is to stay positive and to never give up (fighting). After my engagement at the client ended, I lost touch with how Linda was progressing. I checked in with a former colleague once or twice and always asked how Linda was feeling. That  is why I took it real hard yesterday when I saw the link on the client's website to Linda's "Go Fund Me" page and read about the struggles she has endured. I don't know if it was because I have been feeling like crap the past few days but just reading about all her facial surgeries and the post operative issues she has been having made me wonder why do nice and caring people like Linda have to go through this. I have my lovely and strong wife to help me in my fight but who is there for Linda and the others, without a strong spouse, struggling with the "aftermath" on a daily basis?

But then I re-read the updates and I realized Linda is not alone. She has a great support system of family and friends from her Church, who were nice enough to start her "Go Fund Me" site. Please keep Linda and all of the brave people young and old fighting their Cancer Battles on a daily basis in your prayers. If you would like to help Linda, please visit:http://www.gofundme.com/op5oa0.

For all those fighting, Stay Positive, It's a Must!!!!

Orlando Loves Scott

I was saddened to hear of the passing of Scott McKenzie. Scott was a long time morning radio host here in Orlando on the station that plays mainly music from the 80's and 90's. I personally didn't know Scott, never met him, but when I moved to Orlando in 2003, I enjoyed listening to him and his show most mornings. He wasn't one of those rude, obnoxious, over the top morning jocks that are just looking to get ratings. He was someone that made you feel like you you were having a nice fun conversation (with him) while you were driving to work and once the conversation was finished you walked away in a great mood.

I remember the first time I heard Scott mention that he had cancer on the radio a few years ago. He was out for a period of time receiving treatment and he had come back and was thanking his listeners for all of their love and support. He still had that friendly voice but underneath that tone you can tell he was a caring determined individual. Here was a middle aged man fighting his battle with cancer while I was involved with the "Battle After". It was inspiring how he pulled off this morning show every day and kept leaving his listeners "walking away" a great mood as they started their day.

I was working mainly from home up until a few weeks ago, so during my morning commute to my new place of employment, I would flip the radio between stations and when I was listening to Mix 105,1, I just thought Scott was on summer vacation. That's what made yesterday's news so shocking as I had no idea he was coming to the end of his fight. I listened to the beautiful tribute to Scott on my way to work this morning and I read his "Goodbye Post" from last Friday. It was moving, tearful, unselfish, and inspiring. I strongly recommend reading his post at http://mix1051.cbslocal.com/2015/08/07/scott-mckenzie-cancer-update-the-on-and-off-buttons/.

May you Rest In Peace Scott and you didn't loose your battle because you left your listeners "walking away forever"in a great mood. #OrlandoLovesScott

Enjoy the Good Days

We spend so much time feeling bad and battling day in and day out to function in life that every once in a while there is a period of time that you actually feel good for a change. It may be a day or two, or even a few weeks, but all of a sudden you feel normal, in fact you feel great! The pain is gone, the side effects from all the medication you are taking doesn't bother you and you are happy.  You are knocking out your tasks at work, doing activities with your children, being intimate with your wife and you forget there is or ever was an issue with your health.

Well my friends, enjoy it! Don't over analyze and waste precious time as to trying to figure out "why" you feel better physically and what caused you to feel better physically because unfortunately those days of continuously feeling physically better end. It's a roller coaster with good days and bad days so why torment ourselves with over analysis! Don't start playing doctor and screwing around with your medication and spending hours on the web searching for the meaning of this "Miracle".

The biggest asset we have in this battle is our brains; control over how we think and how we think can effect how we feel. So when the physically challenging days come rushing back, stay positive! Tell your children how much you love them and kiss your wife and tell her how beautiful she is because if you do those things every day, then every day is a Good Day!

Happy Birthday Evan Lincoln!!

One year ago today one of the biggest and the greatest milestones of my life occurred. My son was born at 7:30 in the morning. My wife and I decided to name him Evan Lincoln. Evan means "By God's Grace" or "a Gift from God",and Lincoln after the greatest American who ever lived. Evan means so much to us because we didn't think he would come into our lives.

My wife and I wanted to have a child together since we met. I have three wonderful children from a previous marriage and Holly has a rambunctious daughter from a previous marriage.  Before my last cancer operation, Holly made me promise that I would come back to her, i.e. wake up from the operation. Her love and support brought me through. However, months went by and still no baby.

Holly was checked out and was fine, so we chalked up our difficulty getting pregnant to all of my operations. Just when we got to the point where we decided to look into adoption God gave us a gift and nine months later he was here and for the last 365 days and for every day hereafter I will thank God for this gracious gift.

Self Worth - The Thrill of Working

During the Journey To Normalcy, we need not forget to celebrate when good things happen such as the unconditional love of your spouse, the laughter of children, and the excitement of starting a new job. We get so busy dealing with our physical health, we need to cherish and appreciate being able to go to work, contributing to our family income, and building a career.

You have such a great feeling of self worth when you get a job and someone believes that you have what it takes to help their company grow. They view your scars (physical and psychological) as an asset and not a detriment or a "Scarlet Letter". After all, this is what you have been fighting for, to be "normal".

Cancer and for some dealing with the physical issues once the tumors are gone naturally consume you, but you can't forget to live and enjoy life and enjoy what you do for a living. Take your experiences and use them as a positive. Employers will like that you look at things differently being a cancer survivor.  Cancer doesn't define you, it is not the only thing about you, so live your life to the fullest and build your career or start a new one. The possibilities are endless.

Dr.John Pharmasists or Medical Doctor?

One of the many things that sucks about dealing with the physical issues of having numerous abdominal surgeries is the different medications that I need to take. It is hard to find the right balance of medications to control the unbearable pain and be able to function so you can be a loving father and husband, and work so you can provide for your family. In order to achieve this I also take medication to counter act the side effects of the three different pain medications. So, is it fair that my Pharmasist, who calls himself Dr. John makes me feel guilty every time I pick up my medication?

John works for a well known national chain and somehow has transformed his Pharmasist license into a medical degree. I have heard him tell customers that he won't give them their medicine because he doesn't want to loose his license. Several times he has made me wait 24 hours for my medication stating that it was the law. Maybe he is correct but he doesn't need to make patients feel worse than they already do. Every time I go to the pharmacy, I pray he is off because I don't want to pretend to be his friend or feel like I owe him an update on my condition just so he won't hold back the medication that I need to function in life.

The major pharmacy chain that Dr. John works for needs to teach their Pharmasists how to treat their customers with compassion and kindness. He needs to learn that most of his customers or at least this one would rather not be on these strong medications. We're not drugs addicts, we are loving and caring human beings that just want to enjoy life. Dr. John, if your first thought when meeting your customer is protecting your license, then maybe you should go into a different field.

You Are My Sunshine!

When I met my lovely wife, she had two pugs named Sunshine and Angel. Sunshine was tan and always seemed old and grumpy. She snored so loud that I didn't know how anyone could sleep in the same house with her. The only time Sunshine got off her dog bed was to go to the bathroom or eat.

When my mass came back and my health was getting worse in March and April 2013, my relationship with Sunshine changed. She could somehow sense that I was in bad shape. I spent most of my days on the couch and Sunshine would start sitting and lying next to me. Sunshine watched over me and she greatly moved me and filled my heart with warmth, courage, and positivity.

Over the last couple of years, Sunshine became my dog. She became more active and playful. She was a happy 14 year old pug. Unfortunately, time caught up with Sunshine and she became sick with a terrible cough and she could barely walk. Our beloved Sunshine passed away this week. I know she is in heaven and out of pain. I will always cherish my brief time with her and how she comforted me in my time of need.

Why Medical Marijuana Should Be Legalized in Florida

I grew up in a sheltered environment in a Long Island middle class suburb in the 1980's. The town I lived in was predominantly white with Christian and Jewish white collar families. It was understood that you went to college right upon graduation to obtain a good professional job, and that pot was bad for you. This was the height of the Nancy Reagan, "Say No to Drugs Campaign ". If someone smoked cigarettes, let alone pot, you were considered a derelict or a "dirt bag ".

My first year of college was the first time I was exposed to pot. One of my hall mates was known as the campus dealer and would invite me in for a hit. I would always pass thinking my brain would explode or I'd turn into Cheech Marion if I got near the stuff. Needless to say, I surrounded myself with like minded people and thought the only exception to my way of thinking was if someone was terminally ill with cancer, even though I did not understand why pain medication would not suffice for them. I was young, altruistic, and naïve.

When I met my wife at the end of 2012, I was at the lowest point in my life. I had three operations related, to cancer and had a mass on the lower left lobe of my horseshoe shaped kidney. Scar tissue covered my abdomen and intestines, which caused me great pain. She opened my eyes to the fact that a doctor had me hooked on Colonipin and helped me get through the painful three week withdrawal from this drug that was not helping me but slowly killing me.

Two months later, I had a third cancer operation where my mass was successfully removed but the scar tissue was not. It was too high risk to do both procedures at once. After seeing me suffer through taking medications for pain and other medications to help offset the side effects of those medications for pain, my wife asked me if I would be opposed to trying marijuana, if it became legal for medical treatment, in order to see if it would help. Of course my old prejudices came back, but after suffering a few weeks more I told her “what do I have to loose”? I decided that I should do some research on the subject as I was afraid of the example it would set for my children, not to mention I didn't want to eat all of the Doritos in Orlando.

After reading and watching many news reports on the topic, I voted for the legalization of medical marijana in the State of Florida in the past election and very disappointed it did not pass with the required number of votes. I was coming to the realization that I would have to try and deal with the FDA approved pill cocktail that my doctors prescribed for me. On Sunday, June 7, I watched a Dateline special on NBC about children and adults who suffer from various horrible debilitating diseases. I saw their families fighting for the right to give thier loved ones medical marijana in their respective States. 

It got me thinking, "Why not Florida?" There are 23 States that have approved the use of it for medical purposes, so why not the Sunshine State or the entire country? After all, science is based on facts, or so we were taught in school. The science is the same for the 27 states that have not approved of its use for medical treatment as the ones who did. Many Americans suffer from from illnesses and the aftermath of illnesses like myself, some much more than me. As Thedore Roosevelt said, "In any given moment of decision, the best thing you can do is the right thing, the next best thing you can do is the wrong thing, and the worst thing you can do is nothing."  Well, legalizing medical marijana for the suffering is the best thing we can do

Why Can't I Feel Normal???

I first got diagnosed with renal cell cancer in 2007. It was a shock that I will never forget. I went numb throughout my whole body. When I met my surgeon, Dr. Phillp Spiess form Moffit Cancer Center in Tampa, he said that he would remove the mass from my left kidney, cutting through my abdomen, and I should make a clean recovery and there was less than a 10% chance a mass would come back. Little did I know that this was only the beginning of my long road of dealing with the aftermath of having a Stage 2 carcenoma.

A year after my operation, I developed several hernias along the surgical incsion line, from my rib cage to right below my belly button. Fun right? Operation #2 commenced and a year later, Operation #3 after the repair failed. The thing is that all of the slicing and dicing did not cure the unbearable pain that I felt.  What is worse than the physical pain is the psychological pain. You go doctor to doctor, CT-Scan after CT-Scan and all they could say was that I had scar tissue built up, but that shouldn't cause you this much physical pain. I was lost and depressed.

After a while, I felt people got sick of hearing about my issues. I felt like a "Debbie Downer".  Hell, if it was cancer or I was going through chemo or radiation, then I had a "legitimate" reason to feel the way I felt. I had never been so alone in my life. All my pain walked down a one way street and I was living in the dark cave of forgotten patients, who just want to be treated like a human, not a victum, not a number, not a lottery ticket to bill insurance, and not a fraud. When I reached rock bottom mentally, God gave me a gift, an angel to guide me, to believe in me, most of all to love me.

Fast forward to 2015 and two years removed from a 4th operation to remove a second mass on my kidney. Happily married to that beautiful angel and we had a boy, we named him Evan. Life can be mean and knock you down, but God has been gracious. I am still running the same race. When will it end?!? The cancer may be gone, but my fight to be "normal" continues...and I am determined to win.