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.