Oxaliplatin:The Good, The Bad, And The Ugly

I am currently taking a chemo drug called Oxaliplatin (gotta love the names they give these drugs). According to the various sites on the web state that Oxaliplatin is a platinum-compound chemotherapy drug that acts as an alkylating agent. It stops the growth of cancer cells, which causes the cells to die. That’s a very good thing.
Unfortunately it also comes with the bad and ugly side of chemo treatments.

Possible side effects

numbness and tingling in hands and/or feet due to nerve irritation
numbness of lips
abdominal pain
mouth sores
tiredness (fatigue)
increase in lab results suggesting changes in liver function (Your doctor will discuss the significance of this finding with you, if any.)

Less common
trouble walking
low white blood cell count with increased risk of infection
low platelet count with increased risk of bleeding
trouble swallowing or breathing
poor tolerance to cold temperatures
loss of appetite
dehydration (too much water loss, causing thirst, low urine output, dry mouth)
allergic reaction with rash, itching, flushed face, swelling lips or tongue, or sudden cough*
abnormal blood tests which suggest that the drug is affecting the liver (Your doctor will discuss the importance of this finding, if any.)

scarring or fibrosis of the lungs
vision problems, including blindness, which go away after treatment
kidney damage (may be permanent)
reduced liver function or liver damage
death due to allergic reaction, lung damage, bleeding in the brain, or other cause

Now the doctors will tell you that the side effects affect people differently. With me, the worst have been the sensitivity to cold, the tingle and numbness in my finger tips, fatigue, abdominal pain, and constipation. I have come off relatively good considering, even though to those of you not experiencing this it may sound horrible.

In two weeks I will hit my 6 month mark on being on the Oxaliplatin. This is significant because studies show that after 6 months, the Oxaliplatin basically becomes more detrimental than helpful. The side effects can get significantly worse and the effectiveness of the drug on the cancer cells lessens. Therefore the recommendation is that after 6 months, the patient is taken off the Oxaliplatin. Good news for me in that my side effects will go down considerably. Hopefully it will have done it’s job while I was taking it. I will still be taking my other chemo indefinitely but I haven’t experienced many side effects from those yet.

So for now, I’m looking at this as a win, and that’s a good thing.

In bad times and good, I have never lost my sense of zest for life. –Walt Disney

If you do your best each and every day, good things are sure to come your way. –Tiana (Princess and the Frog)


“Follow That Dream”

When you get a life threatening disease, you begin to put your life in perspective. Have I made any kind of difference in this world. Did I do anything that made a difference in anyone else’s life. As a Christian this one should be paramount in our lives. Would I even be missed by the world if I were to leave this world. Not my family, I realize I will be slightly missed by those I love, hehe. I’m talking about the rest of the world.
Now like everyone else, I have had dreams of what it would be like to be able to do something that I love. When I was much younger I wanted to be an actor. I did plays in my younger days in high school and at The Greenville Little Theater. I then transitioned into running spotlights for the theater which wound up leading to other spotlight jobs like for the Pablo Cruise concert and several beauty pageants including the Miss SC Pageant one year. Lot of fun. I thought that might be the path I wanted to follow for awhile but alas, that was not to be.
I also wanted to be a rock star. I began taking guitar lessons. I wrote lyrics/poems and sang my songs into a tape recorder that I had. I eventually I realized that I wasn’t that fond or very good at playing the guitar and even less talented in the singing department. And since I couldn’t read or write music, that only left my sappy poems. Of course you may want to reconsider your lyric writing when you start having titles like “She’s Not Bad, Just Slightly Trashy”.
Finally as I grew older and slightly wiser, I took up photography. That was and still is something I immensely enjoy doing. I began taking photos of every church or sporting event I went too. I actually began making some money doing some side jobs. I decided to try and start my own business doing what I loved. Funny thing happened. When it began to be a job, the fun got sucked right out of it for me. I began dreading having to go to a shoot, especially weddings. They scare me to death! That business didn’t last very long. Now I only do pics for myself and family events and my love of photography has been restored.
Another thing I have always wanted to do is write a book. I have always loved to write. I used to write short stories, mainly horror, I was a big Stephen King fan so I naturally leaned that way in my writings. I look back on some of those little stories and they weren’t half bad. A little amateurish of course, but not too awful. I started writing a book titled “The Nightmare Chronicles” which was going to be a collection of horror short stories. I wrote a couple of stories but as it is with most endeavors I set out on, I never finished the job. It’s a problem I have. I have trouble following all the way through on a project.
Now since my illness, I’ve been wondering what I could with this “extra” time I have since I have not been able to work. The thoughts of writing an earth shattering novel has crossed my mind but my attention span for that may not work out. I have began writing this blog which has been very therapeutic as well as very helpful with my writing. Most writers will tell you that the key to writing is to write….everyday….something. I also am writing a movie review blog. Just something to keep me busy. But that is not enough. Suddenly I find that I want to write all of the time. Therefore, I have begun writing, of all things, a children’s book.
Now there may not be much things about children that I can write from any kind of experience that I may have gleaned from my few years as being a grandfather (or G-daddy as I am known by my grandchildren.)
Writers say you should write about what you know. I could write a book about living with cancer, and that may happen sometime later down the road after I have beaten this disease. But for now, I will write stories about my grandson’s and their adventures. I have the first story written. I will have to find me an illustrator as my artistic skills are far below those needed for such a task.
Now is this why I have been stricken with this disease? Something to finally get me to do what I was always meant to do? I don’t have those answers. I just hope to finish what I’ve started….for once. If I do finish, will it change the world? Doubtful. But if it inspires or helps anyone else to go out and find their true calling, then maybe everything was worth it. Don’t let something like cancer force you to slow down and re-evaluate your life.

“Keep your dream alive. Dreaming is still how the strong survive. “–Oliver and Company

“All our dreams can come true if we have the courage to pursue them.” -Walt Disney

“I’ve got to follow that dream wherever that dream may lead.” -Elvis Presley

“The Heart of the Matter”

When I first learned I had cancer, it was like a dagger through my heart. My wife Brenda was there beside me. I can only imagine how she felt. I’m trying to make light of the situation so as to keep her from losing it but in reality that’s how I deal with things anyway. Throughout that first terrible week, Brenda was there with me through all the bad news and never showed how bad it was affecting her, at least not to me. When I began my chemo and the sickness and side effects began taking their toll on me, she was there with me the entire time. She got permission to work from home, which I will be eternally grateful for the generosity and compassion that Legendary Homes has shown during this time. My wife has been there for me at my lowest and most humbling points during this illness. She does everything without complaint or consideration for herself. When you promise to have and to hold, from this day forward, for better, for worse, in sickness or in health, you hope to never have to put those words to the test. She has lived those words and my love for her grows stronger everyday. She makes me stronger. She makes me a better person and I love her very much and she knows this because I tell her everyday several times a day, just as she does to me. She is the love of my life and I would never want to live without her.

This Valentine’s Day couples will show their affection by going out to dinner, buying flowers, going to see a romantic movie (we will be seeing the new Die Hard movie. That’s just how we roll.), and maybe buying a heart shaped box of chocolates. I hope that every couple would do these things more often than just this one day that is dedicated to the affairs of the heart.

My illness has shown me that everyday is precious and nothing should be taken for granted. The Cancer may take my colon and my liver but it will never be able to get my heart. That was taken years ago by the most incredible woman I’ve ever known. I love you Brenda. Happy Valentines Day!

With you here, I know that life is much more fun. –Pooh

Sometimes the things that you’re looking for, you can’t see with your eyes. You have to see them with your heart. –Peter Pan (Disney Dreams)

Invisible Voices

I sometimes hear voices. Not all of the time. And they never say much more than my name. They will sometimes wake me from a dream and on some occasions, I will hear them while I am fully awake. Now don’t worry. They never tell me to go kill my neighbors dog or anything like that. They are very succinct in what they say. They can be a woman’s voice or a man’s and in at least one instant a young child’s voice. And the only thing they say is “Scott”. I will wake up and look around for who is speaking, knowing full well that there is no one there. But the voices seem so clear and sound as if they are right beside me. A couple of times I have heard them while I was awake and my wife in the next room. I’ve asked her on a couple of occasions if she had said something to me and of course the answer was no. I’m not sure which of the many medications I’m taking is causing my invisible voices, but it is another interesting side effect that I am dealing with.

Recently I’ve been having vivid hallucinations of people. At least with these I know that I am asleep, or rather, the space in between consciousness where your eyes are closed and you hear things going on around you but you have begun the process of slipping off to Neverland. These people never seem to be harmful. It’s almost as if they are just stopping by to chat. Sometimes it is people I know but mostly faces that I never recall ever meeting. I’ve always had a very vivid and imaginative dream life. Someday perhaps I will write a blog or book or something about that. These drugs have definitely taken my subconscious life into a whole new level of strangeness.

I’m pretty sure I don’t need someone putting me in a little white jacket and putting me in a padded room just yet. I might be able to get some good writing material out of this side effect. Although it is 3:51 a.m. When I’m writing this. Insomnia……another side effect. One of the many reasons cancer sucks.

Most everyone’s mad here. You may have noticed that I’m not all there myself. –Cheshire Cat (Alice in Wonderland)

Plastic is the “New” Silver

One of the little side effects of one of the drugs I am taking is that silverware and pretty much anything metal leaves a metallic taste in my mouth which sometimes affects the way things taste. Because of this I don’t drink anything from a can and I use plastic ware. Not a big deal at home, however it can be annoying having to always ask for a plastic fork whenever I go out for a meal. To their credit so far, every restaurant but one has been more than accommodating.

Everyone who knows me knows that I am a big Walt Disney World fan and usually I gush about how wonderful they are at most everything. At a recent visit to one of our favorite eating establishments there, “Via Napoli”, I requested plastic instead of silver because of my condition. The waiter went to the back and when he returned he informed me that the manager said that they could not accommodate me due to the fact that they did not have any plastic at all. Now “Via Napoli” is a great restaurant and I love the food but it is not a 5 star establishment. Plus it is inside the Epcot resort at Disney World. I would think that they are probably one the biggest users of plastic utensils in the world. My daughter wound up leaving the restaurant and walking down to the next eating establishment and getting a plastic fork and knife for me.

This is the only restaurant that this has happened in. I still love “Via Napoli” and I will go back again, but it seems odd that any major restaurant wouldn’t plan for people with a special request such as mine. I’m pretty sure I’m not the first one to make such a request and I won’t be the last. So for future reference for anyone planning to open or who currently owns their own restaurant, consider having a supply of plastic ware on hand for those of us who are metal intolerant. And it may not be a bad idea for those of us with this condition to carry an extra set with us.

I plan on sending a letter to Disney and the manager of Via Napoli to encourage them to consider the metal challenged like myself, but I’ll do it in a magically Disney type way. 🙂

The trip to Disney itself was an overall success. It was my first one since I started my chemo treatments so I was a little apprehensive about it. I was able to move around the parks all day without the aid of any wheelchair or scooter (I will have to be in pretty bad shape before I do that). Plus I was with four boys under the age of 5. Not what you would call a stress free vacation for my first post chemo trip to the Kingdom but it showed me that I was able to do things that I previously had not been doing for the past three months. I did take plenty of breaks however because I am still kinda weak and I have not yet been able to get rid of the shakiness in my hands. Still, I was at Disney and everything seems better when I’m there, especially when I’m with family.

“You’re braver than you believe, stronger than you seem, and smarter than you think.” Christopher Robin