Not Complaining

                                              Parade of Planes, New Carlisle October 2013

I learned a new word today: Catabolic. It is, apparently, what I am experiencing. When the actual muscle tissue in the body endures lengthened stretches of the catabolic state, it eats away at itself in an attempt to find a source of stored energy.

For the past few weeks I have been working with a thera-band and some grippers in an attempt to build back my arm, shoulder, hand and back muscles. When I looked in the mirror shortly after my radiation treatments, I was literally skin and bones. So, I began trying short and light exercises to try to build back my upper body strength and muscles. I also have been trying short (100-200 yard) walks. I think my peripheral neuropathy in my feet is slowly going away because I get screaming pain at the ends of my toes and the bottom and sides of my feet now and then. When I go for walks I am tired when I begin and tired when I end. But, not more tired. And, I am not out of breath. With the neuropathy, though, my toes are constantly clenching because I can't feel my feet bending normally. It is a balancing act. I walk like an intoxicated person! But, it gets smoother now and then so I think it is getting better.

The muscle thing, on the other hand is different. I noticed that, along with bouts of fatigue, that my muscles were constantly sore and achy. It never went away, even if I rested for a couple of days. I am up and down several times a night with the pain in my muscles and feet.

My appetite has fallen off a bit but I was eating an egg every morning and a meal at night along with some snacks. I noticed, however, that I wasn't able to eat as much and I had to force myself to eat.

So, today when I saw my Radiation Oncologist and Nutritionist, I expressed this to them. That is when they told me about the Catabolic state and they said I was wasting away. That I needed to eat, eat and eat and stop exercising. Short walks are fine, but limit the physical activity until I have gained enough weight to come out of the Catabolism. It will be hard.

Also, I got the results of my PET scan that I had on the 21st and I wanted to cry. The chemos and radiation hit their targets with good results, but the Cancer has fought back and re-appeared in my neck and both of my lungs. I'll talk to my main Oncologist about this next week. I am on Tarceva and it should be helping...

I trust in the Lord and am not ready to throw in the towel. This is just another chapter. I need to slow down and gain weight. I need to rest and limit my Clowning to just one or two things for the rest of the year. I need to win this battle (or die trying?)...we'll see what transpires...eat, eat and eat and rest and rest and walk and smile !

Life is Good...Life is an Adventure !!!

Normal May Not Be Normal

So, I started feeling more normal a couple of weeks ago. Trying to shake off the fatigue and dealing with the peripheral neuropathy. I am trying to take short walks. It is like learning to walk again. It will be awhile before the neuropathy goes away--so I am told. My weight is down to 142 lbs. Before I was diagnosed (December 2011) I was at 180 lbs. All during Chemo, I maintained a weight of 160. As soon as I started Radiation, the nutritionist said that I had to get more than 3000 calories per day. I had been eating for energy and avoiding fats and artificial stuff. Now I had to eat everything! I was able to maintain 150 during Radiation.
Okay. On August 16th I put on a performance at a local nursing home and, after I left, I had a slight mishap while attempting to carry all of my stuff (props, balloons, camera, action)...suffered a badly twisted ankle and learned that I had chronic Stupidity!
My ankle is starting to feel stronger but still hurts....and, along comes a really, really bad sore throat !
I am emerging from a life or death battle with Cancer and winning....and, starting to feel normal...and, now am experiencing Normal Maladies !!  What a Clown !!!

Life is Good ... Life is an Adventure !!

6 weeks of Rad

I just finished 6 weeks of Radiation treatments. I can't believe it has been so long since I have updated this blog...well, actually, I can. I used to spend evenings on the computer browsing the news and finding interesting new information on Mars Exploration; going on Facebook to see what was on everyone's minds; reading blogs from around the world. Lately I have neglected the computer altogether it seems. I didn't even miss it. Where did the time go? Where did my energy and motivation go?

                                               Careful and JoughJough sign out of Rads

Early into the treatments I told my Radiation Oncologist that I thought that I was finally getting over the extreme fatigue that I had experienced with all of the Chemos. I told him that I was just starting to obtain some normalcy. He advised me to enjoy it while I could because the Radiation was going to hit me like a sledge-hammer. That bad? Could be...but, he thought that I had such a positive attitude and that I was following all of the advice and methods to prevent side-effects, that maybe mine wouldn't be so bad. In truth, I didn't get a sore throat or much acid reflux. I didn't develop a cough--well, just a little, but not much. And, I didn't have trouble swallowing.

I did experience extreme weakness. At first I found out that when I had an overwhelming tiredness I could lie down for just 20 minutes and it would go away. I discovered that sitting for a time would really wear me out...how? I would try to go outside and walk for 10 minutes. I would go and visit somebody. But, the weakness was debilitating. I didn't want to lie down because it made me feel lazy and I had too much to do. I would log onto the computer and attempt to check my email but it would tire me out. I might read one message and then give up. It was depressing so I stopped even trying to use the computer on most days.

I was still interested in everything and curious about the outside world. But, it was too much energy trying to keep up.

I found myself going to bed earlier in the evening. I am a night owl so this was not like me. I would lie down at 9pm or 10pm....get up again, sometimes, at 3am and try to do something. Couldn't. So, I would lie back down.

Except for weekends, I was up every morning at 9am...my ride (thanks to all of the wonderful Church people that volunteered to take me to my treatments!) would pick me up at 11am and I would arrive at my treatment at 11:45. I was usually home by 1:15pm.  Most days I would go and visit Gary and Susan but I wouldn't stay for long. I would want to go to the park or the store or visit the nursing home, but I just couldn't find the energy.

Added to this lack of energy, the dietician said that I needed to gain weight and to pack on the calories by eating every two hours. I dropped about 9 pounds right off the bat and I knew when I looked in the mirror that I was a skeleton!

During Chemo I had been eating mainly for energy so, I ate a lot of protein and eschewed pasta and breads and anything that didn't taste right. Now, I had to eat everything in sight. I began snacking on peanut butter and jelly sandwiches, drinking Boost, eating Macaroni and cheese, potatatoes. Eating was also wearing me out. I gained 2 1/2 pounds one week and 2 ounces the next week. Through all of my Chemo I had maintained a constant weight. By the end of my Radiation treatments I had lost 5 lbs. Not bad...but it was a lot of work and it drained me.

They said that the weakness may continue for another month. I still have trouble with my feet from the Chemos. My nails are bothering me on my hands. I don't know where the Chemo side effects delineate from the Radiation ones. I have notes all over the house with "things to do" and it overwhelms me to look at them even. I am going to finish a few things and then I am going to throw out all of the notes and straighten out my room and start fresh.

I worry about depression but don't know how I could be depressed because I am an optimist and I love life...but, I worry about all that I have to get done and I worry that the cancer might return and hit me in the brain...I worry about where the cancer will pop-up next....I never worried about that before but I just don't feel right, somehow. And, I don't have the strength to distract myself.

I should be overjoyed that I have endured 16 months of straight Chemo and 6 weeks of Radiation. I should be thankful and happy that I have had the best Dr.'s and technicians and medical staff. I should be relieved to know that we have this Cancer on the run. I should thank the Good Lord above for holding me every night and walking with me every day...

Tomorrow is another day...I'll be able to do more....I'll feel better....

Life is Good...Life is an Adventure !!

Tired of Fatigue

                                         Caricature by Russ Hogle aka Cartoona Matata


Now that I am finished with my Chemo it is possible that some of the side-effects will begin to subside. People have noticed recently that I am walking different--almost limping. That is because of the peripheral neuropathy. My feet hurt mainly on the soles. Wearing socks makes it feel like I am walking on glass. I have several pairs of shoes and vary them in an attempt to find the right ones for walking. It is different every day. Some shoes work sometimes and, at other times, they don't. Since it has been warming-up outside, I tried my sandals. They felt great! I may start wearing them although my toes look like my fingers in that they look like they have been smashed by a hammer. The nails are brown and bruised and they FEEL like they have been smashed. In fact, the only reason I take my painkiller is to be able to tolerate and to be able to walk. I usually wait until the pain becomes unbearable. Sometimes the interval between medication is 2-3 hours and sometimes I can go up to 7 hours.

I haven't lost any weight but my muscle mass is gone. Originally I approached all of this as an athlete would prepare for a game or event. I would go for long walks and I would exercise a lot by doing sit-ups and push ups and isometric exercises. But, since the Chemo would attack fast-growing cells or shut down my metabolism if I did too much, I had to severely limit my activity. I am currently trying basic yoga. I was at the Radiation Oncologist for a CT to determine where the radiation would be targeted and I had to hold my arms over my head. I noticed that my muscles were really tight. So, I believe that by doing some Yoga will help me to get my body more limber.

As to the Fatigue...well, that is another problem. The effects of the Radiation treatments will be some fatigue !  And, I have been extremely Fatigued, Tired, Worn-out, etc. for 16 months now ! I have had B-12 shots, I take folic acid and extra B-complex supplements, I eat liver and onions and spinach and kippers and boiled eggs and sardines. I take short rests/naps and try to take it easy. But, I usually end-up trying to do too much or forgetting to take a break. I try to fight through the Fatigue. Not a good strategy. The last few nights, when I am going to bed, I have been so worn-out that it seems that if I go to sleep that I will stop breathing. I lie down and listen to my mp3 player (podcasts and OTR). As soon as I began to relax my lungs and heart seem to interpret this as the time to shut off. I have to get back up and move around. I then go play with Tinkerbelle the Cat and drink some juice or SoBe and sit for a while. I am so conscious of this over-whelming fatigue that it has become an obsession with no solution.

I had a burst of energy yesterday afternoon for the first time in a long time. So, maybe the fatigue is beginning to go away...but, the Radiation may bring it back. I'll just have to see. It will be a bummer but I have come this far and I won't let it get me. I just need to remind myself to take breaks and lie down (which does help) and then try some yoga.

I will be having 30 treatments of radiation over 6 weeks. Starting Monday the 3rd of June.

Saturday there is a Parade in Troy and if I can get a ride I would like to participate...even if it is on the sidelines.

Last week I went to the Circus and had a swell time and am preparing a post to talk about it...

I may be stumbling...but, Life is Good, Life is an Adventure !!!!

Final Taxotere

When I last saw my Oncologist he said that I had enough Chemo and that I did really well. He wanted me to start on Radiation. I told him that my Medicare would kick-in by June and could we wait for it. He replied that I should then have at least one more Chemo to hold me over. Since the last Chemo was so brutal, I asked if I could have one more week of near-normalcy and he agreed. So, I had my last Chemo yesterday, 10 May 2013.

Since the Taxotere seems to build-up in my system, I know that the next 2 or 3 weeks will be tough. Last time I had a hard time getting the motivation to write in my blog. That is why I am trying to get through this now.
I have found that wearing my Yoga Toes helps greatly with my peripheral neuropathy in my feet. But, just like diet and exercise I sometimes forget or slack-off until I find that I need to wear them again. I try to wear them every other day. And, I drink a lot of SoBe Lifewater and grapefruit juice. I used to buy other fruit juices but they are putting artificial sweeteners in everything these days! I enjoy a soda pop now and again but they mainly taste too sweet and not enough carbonation. However, I do like Jarrito's Mandarin soda! I also have a bowl of Frozen Yogurt every evening because it seems to keep me from getting acid reflux. I know that if I don't eat a bowl for two or three nights that I get an upset stomach or acid reflux.
The past two weeks, as I have been out and about, I am always astonished to hear people tell me how positive I have been and how well I am doing. Especially when I feel so tired and my hands and feet hurt so much. But, I accept their observation. And, most of them follow it up with how the power of Prayer works so well. I mention that because I have prayed to the Lord to let my Clowning be a ministry. A ministry of Love and Smiles and a testament to the Lord's plan for all of us. But, I have told the Lord that I am not comfortable in initiating a witnessing. He has heard my prayers. When I am visiting businesses and nursing homes and shut-ins and elderly, it is they that begin talking about the Lord. He opens the door for me to give my testimony and listen to theirs. The Lord is great and he answers prayers.
From the very beginning I was never scared. At first I experienced a sadness that it might be my last Summer or my last Christmas. But, I put it out of my mind and told the Lord that I would accept his plan for me and go wherever he needed me--whether it was Heaven or here on Earth.
I prayed for those that were going through this Cancer thing and for the people that had loved ones that were going through it. I prayed for Strength and Comfort and Peace and Healing for them. I prayed that they would trust in the Lord. And, I prayed for Blessings for everyone that was experiencing heartaches and difficulties and doubts. I prayed for our Leaders in the World that they would make the right decisions to end suffering and Wars. That they would lead with compassion and forgiveness and understanding.
I wear a button that says, "Almost Famous". This is an admonition that I am just a servant. When I am Clowning, I bring smiles and humility. I am the Stumble-bum, the ne'er-do-well, the Clown who tries to get it right. I stay on "Almost Famous" or "Nearly Famous" or "Soon to be Famous". I stand on the edge, knowing that to keep something beyond reach will keep me moving in the right direction.
There are so many things that I want and need to do. I can't wait for my energy level to come back up so that I can accomplish more. My mantra everyday, though, is to at least accomplish one or two things because it keeps me feeling that I am still able to do some things. My priorities, then, are if I can't do everything, at least I should do a few things!

I am so thankful that I have my friends and family and my wife and Clown buddies and church family and Facebook friends to share with. And, I pray that I can be there when they reach out to me.
I am going to try to get a lot of clowning and errands done this weekend. And, the next two weeks I will see how this Chemo treats me. I always think that I will be able to work around the side-effects or get use to them...never seems to happen. But, I will come out the other side feeling stronger and I believe that this summer will hold a plethora of opportunities for clowning and activity!
Life is Good...Life is an Adventure !!!

Fighting Back to Normalcy

I saw my Oncologist on the 11th of April to see if I was able to handle another Chemo and, to also get the results of my most recent PET scan. Good News !!! The tumors in my neck and left lung show no uptake...which means that they are not active. And, they are shrinking. There are still some nodes in both lungs that are insignificant and the doc said they didn't appear to be cancerous. He felt that I should continue with 2 or 3 more treatments and he was also going to talk to a radiologist to see if I could benefit from some radiation to finish off the tumor sites.
Originally, when I was first diagnosed--December 2011,  after 3 biopsies (2 needle and 1 w/scalpel) there was not enough tissue samples to give a specific call on the type of cancer with which I was being  taunted. He had not wanted to try radiation at that time because if it was a certain breed of cell the radiation would have caused it to explode and spread. Now he has enough information that he can be safe with some radiation.

I had the Chemo on the 15th and everything went well. I usually am tired for 4 or 5 days afterward and then start returning to normal. I wonder if this Chemo builds up in my system though. I guess it must because I was Really Tired and Weak. I usually go out visiting during the day and try to clown around some. This time, however, I found that after being out and about for half an hour--I need to get back home and lie down. Also, there was a stomach virus that roared through the local nursing home that I like to visit and I stayed away from there. Thanks to a resident who texted me with the warning to stay away !  I have also been lax in that I have been clowning in crowds and with a compromised immune system I guess I have just been lucky. This round I had decided to be a little smarter and just visit people one at a time and one day at a time.
But, the Chemo really got to me. Aside from being very weak, on about the 3rd day I awoke in severe pain in my legs and shoulders and back and neck. This kept up for several days and really wore me out. I usually take my pain meds as needed--or every 6-7 hours. However, the only relief I got was taking them every two hours in the evening times. And, every 3-4 hours during the day. I found myself going to bed more often than usual because I was so weak and in so much pain. Although I still can't get comfortable and wake every night out of a ridiculous nightmare (not scary, just grippingly and startlingly bizarre!) It just usually signals that I am in pain and need to get up.
My hands look and feel like they have been slammed in a car door. The nails have turned brown and the skin is peeling from the knuckles. And, when I try to twist some balloons I get cuts. The literature on the Taxotere says to refrain from shaving because a razor cut could become infected. However, I only get a few stray whiskers every few days, so I use an electric razor maybe once a week.
My hair fell out after the first Chemo and it has grown back to a "peach" fuzz...but no further ! My lower legs and feet swell ever so often but as long as I elevate them and use Arnica gel and wear ankle socks, the swelling doesn't last long. Walking in socks is painful---the threads feel like wire or glass, so when I am walking around I go barefoot (inside the house). I have also noticed that I can't walk very far and it is really difficult to walk in the first place. I have noticed that my toes are curling under and maybe that is the problem with my ambulation.
My appetite is still good and my weight has remained at 160 lbs. since I was first diagnosed in Dec 2011 ! But, my taste buds change up now and again. I still rely on SoBe lifewater and Grapefruit juice (not from concentrate) and eat an egg every morning. I eat liver and onions once or twice a week for the iron and B12. I eat a lot of spinach and beets. I don't seem to like lettuce anymore. Other vegetables don't taste good to me..except canned, diced tomatoes with green peppers that I put on my spinach and eggs (when I microwave the egg---I usually eat boiled eggs). I still enjoy frozen fish fillets. And, salmon--as long as I know where the salmon came from. I'm losing my taste for snicker bars and spearmint lifesavers. I still like cinnamon rolls and tangerines. I like Kona coffee with a teaspoon of Ovaltine. I eat bratwurst now and again if I can find the right mustard (always a challenge!).
When I approached my Doctor about my various complaints, he assured me that they were the result of the Chemo. That is comforting in a way. It means that after the Chemo that they should go away. A lot of the complaints that I have would normally be classified as having to do with aging...but not mine, ha. So, I guess I am missing out on the growing old creaks and aches.
I still try to accomplish some small tasks every day. I think that it is vitally important to stay active and try to do constructive tasks. If one just gets up and eats and decides it is too painful or hard to do anything and then goes back to bed--well, your body will just get weaker and your self-worth will slide and you become a great candidate for depression. I would rather attempt something and find that I am unable to finish it than to not try at all.
Speaking of which...I am working on a new hat:

All in all I am winning this battle---with the help of excellent Medical staff and a wise and caring oncologist. My friends and family along with their caring and prayers have helped immensely. My Church is always there for me--even when I can't attend as regularly as I would like.
I can see the light at the end of the tunnel and I am making sure to put graffiti on the walls of the tunnel and continue to dance along the tracks of said tunnel !!!
Life is Good....Life is an Adventure !!!!!!!!!!!!!

The Time I Snuck a Cigarette

I had my 3rd Taxotere on Tuesday, 19march2013...everything went fine and my blood levels are still pretty normal. I have a PET can scheduled for the 2nd of April to see if this new treatment is effective. The only side effects so far are some feet swelling(fluid retention) and painful neuropathy in my toes and extreme weakness that comes and goes. But, enough of that...I have decided to take a break from relating my problems or victories for this blog installment. Instead, I think I will lighten it up a little with a story from about 30 years ago. The only time I have snuck a cigarette:

I was working out of a Day Labor office and they had sent a group of us workers to a warehouse in the suburbs that had been leased to a major Department store. They were getting their Spring fashions into the warehouse and we were assigned to unpack them from the cartons and hang them on racks, sorting them by size. I was working in the area of Women's dresses and suits. It was easy work and a nice environment. Unlike most of the jobs that the agency sent us to work at.

Well, 2 hours or so into the work, I found it necessary to go to the bathroom. For some odd reason, the restrooms were in the middle of the warehouse, free-standing like one would see at a park. Not out,on the edge of the building, but in the middle of the floor. I ducked into the Men's room and was immediately met with a wall of cigarette smoke. "It's OK!" someone said, rather loudly. For a minute I thought they must be smoking pot. No, it was only cigarettes. There were, of course, signs forbidding smoking. I was a smoker so I thought, "This is cool, I can have a smoke while I am in here."

I had never snuck a cigarette before, not even in High School (I don't think I even smoked back then). This was a forbidden desire and I didn't warm to it right off. In fact, I thought it was rather juvenile. I was in my mid-30's, as were most of these characters and it seemed decidedly stupid and silly. Well, I took a leak and then noticed someone exiting a stall. The temptation got to me and I ducked into it thinking that if the fools by the sinks got busted that I would be safe because I would be locked in a stall with a toilet bowl to toss my cig into.

The minute I closed the door the stench hit me. The toilet was stopped up. Oh well, the cigarette would mask the smell and the methane would mask my smoke, I reasoned. I lit up and decided to sit down to have a relaxing time. I noticed toilet seat covers and decided this would be good since the seat was most likely contaminated with who knows what. I spread it over the seat and decided to sit right down. I had smoked maybe half of my cigarette when I heard someone say, "I think it's a boss!"
I took a long, quick drag and tried to toss the cig in the toilet while I was still sitting. Not a good idea...that toilet seat cover was highly flammable and the escaping methane from the stopped-up toilet probably contributed to the conflagration! My jeans began to burn and I quickly beat the fire out while I was still sitting. I jumped up and grabbed the toilet seat cover and threw it in the toilet and flushed it---knowing that I would have to run because it was going to flow over.

Luckily, there was no boss that had come in, but the other guys gave me a weird look when they saw my smoking jeans. I just said, "Always stand up before you throw your cigarette in the toilet...". They chuckled, I splashed some water on my jeans and washed my hands and went back to work, wondering why I hadn't just waited another half an hour for break time and gone outside for a smoke. It sure wasn't fun sneaking a smoke and I don't see the forbidden adrenaline rush fascination for doing something that sophomoric. So, I have never been tempted to do it again.

But, a year later, while I was in the large Public Library downtown I decided to roll a Bugler cigarette in the middle of the lobby and a security guard rushed up to me and demanded that I put it out. Some quick thinking on my part got me out of that one....I'll tell you about it and another similar incident in my next blog--if you'll let me!

Hey, Life is Good....Life is an Adventure !!!