An Unexpected Trip

“If you boil it down, just because someone else does the wrong thing we are not exempt from doing what’s right.”
― E.A. Bucchianeri, Brushstrokes of a Gadfly

The past can hurt, but the way I see it, you can either run from it, or learn from it. –Rafiki (The Lion King)

Nothing about my latest trip to Philly went as expected. Probably not surprising to anyone who has followed my journey so far. We were planning on flying to Philly on that Monday arriving in the afternoon and starting my third round of chemo on Tuesday. I woke up Sunday morning and feeling ok other than my stomach still hurting. I got up and went to the bathroom and that’s when I discovered that there was blood all over my stomach. It appeared my wound was bleeding. More than a little scary. My wife cleaned me up as best she could and covered the wound with some gauze. We immediately decided we would not go to the emergency room here in Greenville. After all, the Greenville doctors are the ones who butchered me in the first place. My wife and sisters began to look for a flight out Sunday night. Unfortunately there was none to be found. We found a flight out of Charlotte very early Monday morning.

More scared than in pain, we flew to Philly and arrived early Monday morning. The center took me in and began doing blood work and giving me pain and nausea medicine through the IV. The tests showed no infection. I had no fever and wasn’t ill, just in pain. I had several doctors look at my wound. A lady from the surgical team checked me out and determined that the bleeding was coming from the wound from two spots, both of which were now open. I had two holes in my stomach from the incision that was made on April 9th.

Now the way the doc determined this was by sticking her finger and other things in the holes in my wound. She then cleaned out both wounds and put a bandage on me. That poking and prodding was some of the worst pain I’ve ever felt. I am convinced that all surgeons have a sadistic streak in them. They must go to a special school to learn there trade. Maybe something like “The School for Sadistic Surgeons”. No matter how much I squirmed and yelled, she hardly acknowledged me. I realize it had to be done but really, that was some painful stuff. The doc said I wouldn’t need surgery or antibiotics, we would have to clean the wound daily (aargh).

So after two and a half days in the center’s hospital, we were sent home on a late flight to Greenville on Wednesday night. No chemo was done so we will be heading back for that on Tuesday. Brenda cleans my wound daily and thankfully the pain gets a little less each day (but it still hurts like a booger). I have been walking a lot better and I was able to make to the first annual “Does This Cancer Make My Colon Look Fat” golf benefit for me and Brenda. I will be posting more about this next time. I feel like I’m getting better even if I’m not. And I don’t look too bad for someone who has inoperable stage IV colon cancer. It’s like what Billy Crystal’s “Fernando” character used to say on Saturday Night Live, “To look good, is to feel good”.

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Back to Philly

“Why worry? If you’ve done the very best you can, worrying won’t make it any better”. –Walt Disney

“A day may come when the courage of men fails…..but it is not this day!”
Aragorn

“Like Sands through an hourglass, these are the days of our lives.”

My second trip to Philly did not go as well as I had hoped. On my first day of my 2nd chemo treatment in Philly, I was told by my oncologist that the blood work that the center had done on me prior to my seeing him, showed that all of my levels for my liver had gotten worse. In other words, the cancer in my liver was worse than it was on my last visit. Not a good sign. He also said that I was 0.4 away from having Jaundice. His exact quote after that was “I’m going to give you chemo anyway”. Now there is two things about these statements. One is that once you are considered jaundiced they will stop the chemo and no one else will treat me because it would be unethical due to the fact that the chemo didn’t work and there is nothing else anyone can do for me. Two is that the quote I attributed to him tells me he considered not giving me treatment number two. I am dangerously close to the point of no return.

Other than that the week went pretty much as expected (chemo, lack of appetite) until Thursday. Now surprisingly my anxiety level has ramped up since my diagnosis. Go figure, right? I take a drug called Ativan to help ease my anxiety. That particular morning I wasn’t feeling well. Probably partly because I was a little stressed because the previous evening I saw some blood in my colostomy bag (yeah, I’ve got one of those too. Cancer is so much fun). Even though everything was fine the next two times I checked, the damage was already done to my fragile psyche. So that morning I barely ate, hardly drank anything, and decided to take an Ativan before leaving for one last visit to the cancer center for the week. I wasn’t feeling well on the bus ride and just as we approached the entrance to the center I informed my wife that I felt as if I was either going to vomit or pass out. Guess which one I chose? That’s right kiddies, I chose the latter and was out before Brenda could answer me.

Apparently I was out for about 5 minutes. I have blacked out before but never for that long a period. Now this posed an interesting problem for the people at the cancer center as well as myself. We were seated about 6 rows back and I was sitting in the window seat. There was no easy way to get me off the bus as I was being uncooperative by being unconscious and not able to remove myself. I came two a couple of times and went back out. Scary moment for me but probably scarier for my wife. I remember opening my eyes at one point and seeing Brenda. She was telling someone that they would have to carry me off. I passed out again. The next time I awoke, I felt someone grabbing me under my arms and jerking me up and then someone else grabbing my legs. They carried me to the back of the bus and put me in a wheelchair and rolled me onto the platform and lowered me down. There must have been about 20 staff members out there. By this time I was pretty much awake but still unable to move or even keep my eyes opened. I heard someone keep telling me to open my eyes. They took me to their ICU and put me on a bed in a huge room. They pulled all of my clothes off (a pretty humiliating thing. I’m sure the 10 or so medical personnel got the worse end of that deal however) and began hooking things up to me and drawing out blood. They wound up doing an EKG, ultrasound, x-rays and I don’t know what else. All of this was done within a couple of hours and they told us the results of the tests within that same time frame. If we were back home in SC we would be in the hallway of the ER still waiting for a room after 8 hours. The tests all came back clear. What they determined was that the chemo had dehydrated me. That plus my high anxiety level and the Ativan I had taken had caused my blood pressure to dramatically drop. By this time I was feeling like my old self again. They loaded me up with fluids and kept me overnight just to be on the safe side.

The next day we were released. As I began walking towards the lobby to wait on our ride to the airport, I began to hurt around my right shoulder and in my stomach around my wound from my surgery. We determined that when I was lifted out, I must have pulled a muscle in those two areas. We made home. The pain in my shoulder eventually went away. I am still having issues with my stomach wound as I have off and on ever since my surgery. They may look a little deeper into that problem my next trip to Philly.

We’ve been home a week now and everything has been pretty good. My appetite is good, I’m drinking plenty of fluids, and I have been able to get out a few times. We will be going back to Philly for my third treatment on Monday. Here’s hoping for better news. It would be nice to hear some once in a while.

It’s A Disney Life For Me

I can’t help myself. I like good food, ok? –Remy (Ratatouille)

You know the thing about good food? It brings folks together from all walks of life. –James (Princess and the Frog)

“All the world is made of faith, and trust, and pixie dust.”
― J.M. Barrie, Peter Pan

It doesn’t take long once you know me to know that I am a HUGE Disney fan! I like everything Disney but my true passion is for the Walt Disney World theme park. I have been going there since they opened in October of 1971. I’ve gone there almost every single year and many times more than once a year. My wife and I have an annual pass so we try to get there as many times as we can afford. We have been twice since my cancer diagnosis, once in January and our latest trip that took place over a 12 day period just a couple of weeks ago in June.

Most of my peeps don’t understand my obsession with a certain theme park. Some have asked me, “There’s a several parks closer. What’s the difference?” We’ll, comparing Disney World to say a Carowinds, Six Flags, or Dollywood is like comparing cube steak to filet mignon. Cube steak is fine if that’s all you eat, but once you get a taste of the filet, you realize what you’ve been missing. (Not that there is anything wrong with the other parks or cube steak for that manner, but I think you catch my drift.)

After our sobering news from Philly about my condition, my wife decided we needed a trip to Disney. So she booked it for 12 days at Disney’s Boardwalk Resort beginning the day after we arrived home from Philly after my first chemo treatment there. I was feeling less than wonderful so I was a little apprehensive about the trip. I tend to have a tough time wanting anything to eat or drink after my treatments and that is the two most important things I need to do. We arrived home from Philly on a Tuesday evening and flew out for Orlando on a Wednesday morning. Now to say I hate flying and everything that goes with it is a vast understatement and here I am flying two days in a row while not feeling too spiffy.

We make it to Orlando without incident, and a good friend drove us to our hotel. We brought a wheelchair with us knowing that my lack of stamina would not allow me to walk the huge distances at WDW. It didn’t help me get on any rides any quicker, but we were always the first ones on the bus. My daughter and two grandsons (3 and a half and 8 months) were with us. Now some will say it is the magic of Disney, which may be a little true, but I believe it was more of God knowing what I needed and when I needed it, because I began eating and drinking right away. The entire 12 days I was there I ate well. By well I mean generously, not nutritionally. Still a big win.

We had a great time for two days and then the trip got even better as my mom, step-dad, dad, step-mom, niece, and all 5 of my siblings all came down for the weekend. The first time we have all been at Disney together in about 10 years. We had a great time posing for pics and experiencing Star Wars weekends at the Studios, Epcot, and the Magic Kingdom. Our entire trip was truly “Magical”.

The only setback I had was the area around my incision began to hurt again around Sunday. We believe it may have been aggravated by riding in the wheelchair too long. Still, all in all it was a great trip. We wound out leaving on a Sunday. We then flew to Philly on Monday. More flying. Geesh! My wife has come to the conclusion that we should go to Disney after every treatment. I would like it but I’m afraid our bank account couldn’t handle it.

I realize that this is a bit of a deviation from my usual blogs. Don’t worry. I’ll get back to the doom and gloom later. Right now though, I’m feeling good. Thank you God for giving me a happy place to go to.

The Philadelphia Story

In my last post, I told you how my daughter found out about The Cancer Treatment Centers of America and had set me up for a consultation. We read good things about the place so we decided to give it a try.

They impressed me and Brenda from the start. The Center paid for our airline tickets and picked us up at the airport. They set us up at The Radisson. The following day I began a non-stop array of meetings, tests, x-rays, scans, and consultations. You meet a lot of people and everyone seems to be truly concerned with your condition. They treat the mind, body, and soul. The staff there are the most helpful and caring people I’ve ever seen. I even had a nurse share her faith with me. You won’t find that in most places.

The founder of The Centers had a mother who had cancer. He was not happy with the way she was treated and after she died, he decided to start a place that would treat every patient as if they were their mother. Any patient you talk to sings the praises of the doctors and staff. They have a chapel, a cafeteria, a workout center, and a piano player in the lobby.

By the end of the third day of the evaluation, I was pretty much worn out. My oncologist, Dr. Patel, went over all of the test results from the previous 3 days. Most were pretty good. I did find out that my heart has a defect in it but it was nothing to worry about. No one from Greenville ever mentioned this after doing the same scans. Dr. Patel then began to detail the cancer and where it is. This is where the results took a drastic turn for the worst. The scan showed that the cancer in my liver had considerably increased. It is so bad that even my doctor said that he didn’t see how it had not started affecting me yet. I know why. I serve a Big God who hears prayers and I have a lot of people praying for me. And I thank you all for that. There is no part of my liver that is not touched by the cancer cells. Then he informed me that the cancer apparently has spread to my pelvis. Great. This was a new development. On the bright side (and when I say this I can’t help but think of a Monty Python movie) the cancer appears to no longer be in the colon. I guess they removed it all during the surgery (not that any one in Greenville bothered to say that).

Dr. Patel’s recommendation was that I begin the second line of chemo immediately due to the fact that I have a very small window to work with. I was told that if jaundice sets in, no one will treat me due to it being an ethical situation. Even the Cancer Center will stop treating me. Apparently jaundice means there is no return, end of ball game, sayonara, adios amigos. So we stayed an extra four days and began my new regiment of chemo. It went fairly well so we decided to take a vacation to Walt Disney World. That wound up being a very good thing because as soon as I got there I began to eat. The magic of Disney, eh? We stayed there for 12 days with my daughter and two grandsons. My mom, step-dad, dad, step-mom, 4 sisters, brother, and my niece came down for the weekend. It was a great time and well needed.

Today I am back in Philly for round two. I feel better, not because of the treatment or even the doctors and staff here, but because of the stories some of you, my friends, have told me of how much my ordeal has affected the way you now live your life. If this horrible disease has managed to help any one in any way through me, then I am very humbled and maybe all this is worth it. Maybe wether I live or die is not the issue but rather how I use this time to affect others and possibly give them something to truly live for. Appreciate the life you’re given every day. Give thanks every day. I know I do.

“If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.” Winnie the Pooh

A laugh can be a very powerful thing. Sometimes in life, it’s the only weapon we’ve got. –Roger (Who Framed Roger Rabbit)

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

Notes From the Abyss

Hello. I hope you haven’t missed me too much. I’ve been away for awhile because frankly, I haven’t felt well enough to hardly read anything let alone write. I’m feeling better for the moment and I feel like writing so let me catch you up on what’s been happening.

As you can tell from the title of this blog today, things have not been all sunshine and rainbows. It began several weeks ago when I was admitted to the hospital for surgery. As they were wheeling me away to surgery, Brenda said they could literally see my abdomen swelling by the minute. When I came out of surgery, they had cut away a large potion of my colon. They said it was the size of a child, hence the title of my blog, “Does this cancer make my colon look fat.”
I guess it did. They took out the tumor, part of the colon, and about 19 pollups. They didn’t get everything out of the colon. I have a nice set of stitch marks from the staples they put in. I also now where a colostomy bag. What joy. I spent a couple of weeks in recovery before the GHS let me go.

A couple of weeks later I was back in the hospital over a bleeding problem I was having. Our Dr. Looked at it for 5 minutes and told me to come back if it still bleeding in a couple of days. That lasted until that night when I was rushed to the ER. Seems I had a slight tear on my colon that the doc neglected to check. After a couple of stitches, the on call surgeon was done. One night stay for observation and I thought I was on my way to recovery.

After I got home I found I had no appetite at all and everything made me nauseous. The nausea began to be a major problem because I couldn’t make myself eat or drink. My weight crept down while my dehydration began to creep in. By the end of the second week out of the hospital, I had reached the point of vomiting every few minutes. So…….back to the hospital we go. This time they did a cat scan . Then they hooked me up to an IV for the fluids and they kept shoving pain meds in me as well as nausea medicine and yet I was still sick after for days of this. We made the decision to leave. When the staff heard that they suddenly began appearing. The doctor finally showed up and said they would really like to run some tests. Hello!!!! I had been here four days and now you want to check me out! Too late. My wife and I had it with GHS. The doc said he wouldn’t release me. We would leave AMA which meant insurance would not pay for the stay. After he left, Brenda called our insurance and explained the situation and our insurance person said we shouldn’t worry, they would cover it. (Thank you Cobra).

Since I left the hospital I have began to get my appetite back, we’ve been able to manage my nausea, and I have began walking without my cane more and more. So much for the doctors. My wife swears she will never use GHS again. It seemed as if no one person knew what the other was doing. They very nearly gave me a drug I’m allergic to and one that was never needed.

And the my wonderful daughter started searching and contacting hospitals and the particular cancer center in Philly is one of the best and they have agreed to see me this week. So we will be flying up this week for a few days and we will see what they have for me. I didn’t want to go but my daughter and wife guilted me into it. I think it will be a good thing though. If they can’t fix me, then no one can.

Now while all this was going on, the darkness can settle in to you pretty quick.I am a Christian. I have been saved. I believe in the healing powers of Christ. But when you are in the depths of being poked, and prodded,tested, and all those wonderful needles, you can get discouraged verily easily. I’ve now prayed many a night asking God to heal me from this disease. I have many, many faithful friends who do the same. But many times I’ve felt very alone, as if God doesn’t care.
Sometimes I don’t know what to believe. I know everyone says God works on His own time, but mine is running out…..and I’m very tired. We’ll see how things go in Philly.

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

Common
nausea
vomiting
numbness and tingling in hands and/or feet due to nerve irritation
numbness of lips
diarrhea
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*
infection
abnormal blood tests which suggest that the drug is affecting the liver (Your doctor will discuss the importance of this finding, if any.)

Rare
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