Winter Forecast

                                                                 24 November 2013

It has come to this...I am barely able to dress myself anymore. The pain along my shoulders and upper body is relentless. The doctor gave me muscle relaxants because it felt as if my muscles around my shoulder blades wouldn't release. But, I looked in the mirror and felt with my hand that there is nothing there but bone. I suppose there are tendons and muscles holding the bones together. I don't know. All I know is that I cannot sit for long because my body pulls me forward in a fold at the bottom of my rib cage. I try to straighten-up to no avail. I can stand or lie down.

I am trying to eat a lot. I haven't weighed myself lately because I don't want to know anymore. My painkillers have no effect on the pain. The pain is just a nuisance, though. As long as I remain still the pain is not too bad. It is only when I move.

I don't have trouble breathing and I don't have a cough. I don't have trouble swallowing. My appetite is fine but I get full real easily. I try to eat every 2 hours and drink a protein drink (Boost or a generic). The only problem is the pain and, when I walk a short distance, my heart complains by bouncing around in my chest. But, my heart is strong and I will continue to take short walks.

I see my Onc again in a couple of weeks and then we will make some decisions. I doubt that I am strong enough for more Chemo. Maybe the current medicine I am taking will begin to work or maybe the Cancer is just too aggressive.  Anyway, I won't give up and I trust in the Lord and his plan.

I have one more clown gig that I am looking forward to doing. It will involve very little effort if I prepare for it well !

Re-reading this post, it seems depressing...it is not. I am just relating how I am doing. It seems that I am confined to the indoors more and more what with my strength and the cold of Winter. I will make it through the Winter, I know. I will call upon my inner strength and the Favor of the Lord. I will pray in earnest for the well-being of others. I will Praise the Lord and ask Him to bless my family and friends. I will ask for the strength to endure and Trust in His Love. 

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 !!!

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 !!!

The Right Word

Last year, when I was trying to discover a way to describe my peripheral neuropathy, I struggled for 9 months or more with terms such as "tingling", "numbness", "stabbing" and "burning". While I was outside one evening looking at the constellations in the sky, I noticed that my feet were getting cold--as well as my hands. It hit me then. The feeling you get when your feet begin to freeze because you have been standing in the snow too long. That is the exact condition that I felt in my feet with the neuropathy!! Your feet hurt and burn and tingle...yet, they are also numb!

So it is when trying to figure out what I could use to describe the extreme lack of energy that I have experienced with this new round of Chemo. "Tired" doesn't do justice. I felt an over-whelming tiredness during my First round of Chemo drugs: Carbo/Taxol. My joints hurt and I felt as if I had an unending case of the Flu. A really, really bad case of the Flu ! I was tired all of the time but it wasn't debilitating, wasn't keeping me from going for long walks or running errands or visiting friends. I was simply worn-out most of the time.

The Second Chemotherapy, Alimta, had a decidedly different story. I was tired all of the time. When I did too much physical activity, I reached the edge of collapse. I learned to pace myself. I began each day with case of fatigue. I would eat a boiled egg and drink a glass of grapefruit juice, take my folic acid and a B12 capsule (the nurse would also give me a whopping shot of B12 before each treatment) and a small little pill of Folic Acid. I would drink a cup of coffee and go out to greet the day. I am certain that the boiled egg gave me 4-5 hours of stamina. I learned fairly quickly through experience and, also, searching the Internet that increasing activity would run me over--run me down like a bad car battery. I asked my oncologist and he said that the Alimta worked by shutting down my metabolism whenever my cells began requesting nutrients. So, I was able to dodge collapse and deal with the energy highs and lows.

Along comes this Third Chemo...I had read where the Taxotere would cause Fatigue. Well, isn't that what the Alimta did? I figured that I could deal with that--but, No! This was different. I had already been able to start back to work (driving a shuttle/car a couple of days per week) and I asked my Dr. if I would be able to continue doing it. "Probably not," he said. "You will be very tired."
"I was tired with the Alimta," I begged.
"This is different. Your blood counts will change. They will have to be monitored closely," he explained. "You will be very tired."
A bit flippantly I shot back, "Well, I don't see how it could be worse than the Alimta!"

Wrong! This so, so much worse. In fact, I have spent whole days in bed. Sometimes I get up and have a boiled egg, grapefruit juice---the whole regimen, then shuffle to my laptop to check my email only to find that I can barely log in and open the first message. If I manage to open an email I am never able to respond to it. I turn off the computer (not even logging-out most times) and wade through the tiredness back to the living room where I plop down in my chair and turn on the TV. I change the channel 3 times with no luck finding any substance worth viewing, turn off the TV and go back to bed. Ad infinitum.

"Energy" is a term I was using often. Energy--where is it? Energy--how can I get some? Energy--I need it!! I didn't even have the energy to search for ways to increase mine. I couldn't go to the computer for help. I couldn't describe the dilemma either. I could only state that I was out of energy, but I knew that I wasn't! I had energy, motivation, goals, direction. What was I experiencing? It wasn't Tiredness (as in First Chemo). It wasn't Fatigue (as in Second Chemo). What the heck was it.

I consulted the Oracle: MyOncologist. He nodded his head...knowingly...with a slight smile...an understanding. "I see you are experiencing a lot of Weakness. It is the Chemotherapy. Most people cannot tolerate it for very long."

Eureka !  Weakness ! I was never so happy in my life so as to be thought of as a Weak Person! Hallelujah!  I am Weak. I am Weak! Hear me roar (well, not roar but I can mouth the word with a determined look of glee and fire). Weakness is exactly the word that described the condition my condition was in. I didn't feel tired or on the verge of collapse. I just couldn't do what I wanted to do, which was Anything!  So, problem solved yet no solution. My blood levels were still in the normal range but they were teetering to their upper and lower limits and there was nothing to do about it.

I had a Birthday Party to attend last Saturday and I fixed myself some liver and onions with yams on Friday. Liver has B12 and iron and yams usually enhance the redness of my hair--though I have lost my hair again this time around.

I made it to the party and twisted balloons for a time until I felt my legs turning to wood and my feet feeling like fire. I walked around the birthday-cake table, all the while the children were encircling me and following me while tugging at my coat and hollering, "Make me a Dog", "Giraffe", "Sword", "Flower"! I would make a balloon, joke with the child, ask their names, walk around the table, honk my clown horn and then make more balloons. I had a lot of fun.

When I got home, I re-heated some liver sans yams in the microwave and sat down for some TV. After awhile, I got up to put my plate in the sink and found that I could hardly walk. My wife asked if I was going to take off my clown make-up. "After awhile," I said, though I knowingly was thinking that I might leave it on all week because I was afraid I would be to weak to ever clown again and I wanted to have my make-up still on should a situation come up where I could run out and do some more clowning. I alternated watching TV and struggling out of my chair to grab some Jelly Beans for several hours before I finally gave in and removed the clown face.

My left leg was swollen and my feet were burning and I stayed up all nite wondering if I would be able to get back out of bed should I decided to go there. Well, I did and I did and last nite I took a short walk on the sidewalk out front. I walked about 20 yards and then gave up. But, when I got back inside, my lungs felt full and clear and the stiffness in my legs was leaving and my feet felt looser, more relaxed. I am making myself a promise to take increasingly walks every day. I told my wife she would have to walk with me so that I would be assured of making it back home. I am hoping that this will be a solution to easing myself through this round of Chemo. I know that I will be weaker and weaker. The walking should keep my muscles fluid and my lungs busy and clear, though. I am very optimistic that I can wade through this weakness until the Oncologist stops the treatment.

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

My Giddity-up and Go Went Somewhere

I have been trying so hard to update this blog. Usually, I cook it up in my mind for a few days. I have so many ideas running through my mind that I want to share. Sometimes I write and re-write the blog in my mind so much that I end up throwing out everything and starting fresh. However, for the past few weeks, I haven't had the energy to do much more than think, "I need to work on my blog...". In fact, I usually spend my evenings checking my email accounts and reading blogs and traveling the Internet. I spend 2-3 hours on Facebook. Not so much this month, though. I have been coming to the computer and opening an email account and I read a message or two and am exhausted. So, I try Facebook and read a few posts and want to join in the fun and am too exhausted. I was doing fairly well after my first Docetaxel (as generic or under the trade name Taxotere)treatment. I was really worried about it because it seemed to have some difficult and treacherous side-effects. And, my oncologist said that it would make me tired...TIRED ?!!! The Alimta that I had been receiving was a killer when it came to energy levels. I had learned to deal with it though because it collapsed me if I did too much physical activity. I learned to pace myself and was able to keep a modicum of energy level. I knew what I could and couldn't do and I knew how far I could push it. This Taxotere has drained me and I haven't figured it out completely. The doctor said that the fatigue would be caused by changes in my blood levels, mainly. The past two lab tests, though, show my blood to behaving normally. The various readings show well within their limits. My oxygen level is good. My weight is steady. My appetite is still very good. I don't feel stressed, a little discouraged and scared maybe, but the main thing that is defeating me is the desire to do things. Simple things. Make some phone calls. Watch TV. Surf the Net. Anything. I get motivated to do something and the moment passes before I can act. Anyway, this is only my second treatment and I am sure my strength will return soon enough. I have already lost my hair. Which is not a bad thing because my little orange hat looks good on my bald head. Of course, my brown felt derby slips down over my eyes! I may have to stuff it with newspaper! So, I was really looking forward to TechFest this year: The event was held on the 16th and 17th of February at Sinclair College in downtown Dayton. The Mars Society had a booth and display at the event. I always work with them. I have been there every year since 2006. Except for last year. I was so disappointed that I had to miss last year...but I was sick.... So, I was "Over the Rainbow" when I knew that I could attend this year. It was cold out, in the 20's F. I drove down to Dayton and the parking garage was full. I drove around downtown for a half an hour looking for a metered space. Finally found on about a block from the Building. I had my balloons with me and my dog, JoJo. "Is that a real dog?" "Of course it is!" "No it isn't!!!" "Well, it is a hamster that I have disguised as a dog so that he won't be eaten by a cat or varmint!" The moment I got inside and to the Mars Society booth and started to make some Alien balloons, a line formed and I was busy for the next 2 1/2 hours! I really wanted to visit with the other members of the Mars Society (and, I did get a few moments) but everyone wanted a balloon ! I had to leave earlier than I wanted because a lady had called me a week before to see if I could do a birthday party. It was for two children, a boy of 1 year and a girl that was turning 7. I decided to do it because I had done parties for the families before and was also interested in knowing if I could accomplish 2 gigs on one day--given my delicate condition, ha ! I left TechFest at about 230pm and drove home to eat a bite and change into my Clown uniform. The birthday party was in Springfield at 5pm. I got there and stayed until about 730pm. It was a great time. I came home and was feeling a little tired, but was confident that I would be able to make TechFest again on Sunday. Not so...when I woke up on Sunday, my hands and feet were swollen. My skin must have gotten brittle from all of my Chemos because I had myriad cuts on my hands. I ate some breakfast and tried to get ready for the Dayton event again. It soon became obvious that my feet and hands were not going to cooperate so I had to give up. Really bummed me out. And, the energy level was low and stayed low until now...I have some energy because of the recent (Monday the 25th) treatment. I get steroids the day before, the day of and the day after the treatment. It gives me a false energy. More a nervousness or agitation than anything else. I will see what the coming days will bring. It is cold out, well it is Winter, and if the weather warms a bit I will do some walking. I am confident that my Giddity-up will revisit me soon. If not, I will just have to find a way to soldier through it! And, the Lord will strengthen me, I know. Praise God ! Life is Good...Life is an Adventure !!!

A New Chemo

I had my first treatment today (Friday, February 1, 2013) with Docetaxel (Taxotere). 
I was apprehensive about this initial treatment, but everything turned-out fine. This 
particular drug builds up in your system so the next few weeks should be interesting. I 
imagine it will be much the same as my initial Chemos last year--in that I will lose my hair,the Chemo-brain will return, and
the peripheral neuropathy will increase; I will have flu-like symptoms. This particular drug
also wreaks havoc with your blood counts and I will be fatigued and extremely vulnerable to
infections and pneumonia. I will just have to tough it out. 
I worked Thursday night and stayed over at the Hotel instead of going home because my wife was out of town and I rarely hear alarm clocks!  In the morning, when my boss came in for his work shift, we retired to the break room for some intercessory prayer. My treatment lasted for 5 hours and I was alert and calm throughout!

Hopefully I will be doing TechFest in Downtown Dayton at Sinclair College on the 16th and 17th of February. I will be with the The Mars Society (Ohio Chapter)...

Here is an Invitational video from TechFest2013:



I will be answering questions about Human Mars Exploration, but I will also be making some Alien Sword Balloons and Alien Princess Wand Balloons. Luckily, there are other members of the Ohio Chapter of the Mars Society that will be doing most of the talking and explaining !!  Over 3000 people come through TechFest during the weekend and most of them want a balloon! The Wright State biology department is usually across from us and they will let you hold a Tarantula or Madagascar Millipede !  There are many, many hands-on exhibits and I love to walk around and look at them. Darth Vader and his team are usually there to provide Security for the event,also.

So, everything is going pretty well, although I had to quit my job. I went back to work in November of last year and was really enjoying it. But, I am not sure how bad the side effects from this new Chemo will be. I will return to work as soon as I can, My job involved a fair amount of driving and I don't want to put people on the road in jeopardy.

 Life is Good, Life is an Adventure !!!!  Clown around and Go to Mars !!!

Here I Go Again...

I know it is a hackneyed phrase, but I had Good News and Bad News last week. The Bad News is that the Chemo failed to stop the Cancer from returning. The Good News is that I have responded well to a combo-chemo of Carbo/Taxol in the past and may have to go back onto a regimen of that particular treatment.

I had a PET scan on the 3rd of January and then an Alimta treatment on the 4th (see the awesome pictorial above). Then, last week I visited my Oncologist for the results of the PET scan and also to elect a new Oncologist. My Dr. is moving to another territory. He will be sorely missed. The new Dr. is one that I am also familiar with, however, and I know that he is a very professional and capable Medical person.

Anyway, my current physician noted that the chemo had failed and that I had several tumors. He looked very serious. Then, he had an "Aha" moment and he smiled. "They have come back to the exact same places!"  He then pointed to the fact that the previous round of treatments that began in January of 2012 were effective in defeating said tumors. So, he felt that everything would be fine.

I have read that 40% of Lung Cancers return in the area of the brain. I also have heard of it mutating and invading the liver, pancreas or other organs. And, of course it could have spread to the bones or even been more pervasive. So, I guess he is right to be optimistic when he saw that it only came back as a Doppelganger. It returned to the original scene of the grime. I was sure I wasn't out of the woods, just yet. I was looking for signs that it may have gone somewhere else. To come back and try to set-up housekeeping in the same locale was foolhardy on Big C's part....or was it? Is it a feint? A parry? A clever ruse in order to invade another part of my Clown?  We will see. And...we will be vigilant...

I concurred with the Doctor, but that didn't stop the tears from welling in my eyes. Or the utter realization that what had made most of last year a blurry memory would now repeat itself for 2013. And, I had just started back to work and had begun to feel normal....aside from the incessant fatigue, that is.

I have printed out the first four months of last years blog and am going to study them to see what I did right and how I handled the various side-effects. I sort of remember the Chemo-brain and how I had to carry a memo-pad about with me to let me know where I was going and what I was doing. I remember starting the year taking 2-mile walks and by April I could only walk 50 yards. I remember how elated I was when I was able to walk the entire Parade route in Fairborn for the 4th of July. And, I remember the sporadic stabbing sensations as the Chemo hunted fast-dividing cells and destroyed them (normal and suspicious ones). I remember changing my diet and how a boiled egg in the morning gave me energy for the day. I remember how long the Chemo took-- 5-7 hours. And, I remember my "every-chance-I-got Clowning" and my unwavering Trust in the Lord.

I feel I am back to Square One. It is exasperating but do-able.

I was starting to plan ahead and I will continue to do so. I was hoping to change this blog back to things of Mars and Clowning. I will. But, I will continue to log my experience with this disease so that others can see what they might encounter themselves or with a loved one. I have been following some other blogs and forums and it is helpful to know what to expect and to find inspiration from other people's battles.

It has taken me some time to write this and already I am tired. Hopefully I can write some good Mars stuff this week and some crazy Clown things....of course, I will be working, so I will need to stay focused and prioritize and get my procrastination asundered....(don't worry, Spell-check, I meant to use that word!)

Life IS Good....Life IS an adventure !!!

Looking to the Future, finally...

Finished another Alimta Chemo on Friday, November 2nd. A friend from the church, Bill, drove me down to Kettering. It only took 1 and 1/2 hours! The first time I had an Alimta treatment it took 4-5 hours, but each time has gotten shorter. They give me a B12 shot and 2 premeds: one of nausea and a steroid for a potential rash side-effect. And, then the Alimta.
I have begun to feel a lot more "normal" and am looking forward to getting back to Mars exploration and more Clowning. I am hoping to start Careful's Funiversity Clown Classes...maybe in March of 2013 (see how far out I am feeling able to plan!). That way, when the classes finish, the graduates should have some Parades to go to and some gigs to attend since the weather will be nice.
My protege, Vanngo, is doing very well and should be able to become an Adjunct Professor! She clowns from the Heart and, I just discovered that a cousin and her played Circus pretend games growing-up so she has that experience!

Also, her husband, Gary, whom I have dubbed Grateful, has a long history of Softball coaching. So, our Funiversity will be able to have a Softball team and will be entering tournaments. I was on one of his teams this past August and it was a lot of fun !!!

On another note, a friend that I have recently had to have the pleasure of being re-acquainted with, Mary (and her husband, Rick), may also be able to join the Funiversity as Head of the Music Dept.
She is an excellent and experienced piano musician and would be a nice addition for the Clowns. We all know that Clowns need music for Entrances, Dancing, Kazoo Marching bands, a Chorus, etc. !

More about all of that later...I want to tell you about my peripheral neuropathy. It has been getting better. I used to feel like I was walking on broken glass and my feet felt weird. My hands were very sensitive to water. If I would wash my hands with anything but cold water, it felt like they were being scalded. I never could quite come up with a good description for the way my feet felt until recently when it hit me that they felt like when you are out in really cold weather and snow and your feet feel frozen, numb, tingly and stabbing. That is how my feet feel. I can't feel my feet to put on my shoes, yet they hurt in a stabbing, tingly way. I have been using Eucalyptus Spearmint Lotion as needed and I use Yoga Toes 2-3 times a week. The Yoga Toes make my feet more flexible. As we get older, our feet seem to gnarl up and get stiff, but these Yoga Toes stretch and space the toes so that they relax more and become flexible. Even after my neuropathy goes away, I am going to continue using these products because they really help keep my feet healthy and feeling fine.
And, I am still using SoBe Lifewater because it has no sugar and no artificial sugar and just the right viscosity for me. It also has some vitamins and natural juices. I was always looking for fruit juices--not from concentrate, but most of the juices you buy at the grocery have more sugar than sodas and a lot of them are now containing aspartame or sucralose. And, most are made from concentrate. So, I buy fresh fruit or look for Grapefruit juice or Apple juice that is NOT from concentrate. It is always hard to find, though, so my staple is SoBe !
In the morning I am going to go up to the church a wrap caramel candy for their annual Candy Sale. When I first was diagnosed with Stage IV cancer, I prayed to the Lord to use me here on Earth or in Heaven---wherever he need me. I have surmised that he wants me to do my Clown Ministry here on Earth for a time and, now that I am feeling better, I want to help out at the Church as much as possible. They have provided me with transportation all year to my doctor appts and Chemos when my wife was unable to take me.
So, this feeling of "Normal" makes me a little leery, but I trust in the Lord and I have a lot of support from family, friends, clowns and the church. I will just keep putting one foot in front of the other and soldier on !
Life is Good...Life is an Adventure !!!

No Complaints

The Chemo last Friday went well. The shortest duration yet. Only an hour and a half. And, aside from the B-12 shot, they only had to stick me once. My veins have held together really well through all of the Chemos this year ! I am fortunate that I don't need a port. Usually I come home with 3 stick sites in my right arm and one or two in my left. The Chemo can really take a toll on a person's veins. The staff at the hospital has been really good, though, so my veins are fine and they are able to get a good one right off the bat!
I talked to my Oncologist last Thursday and told him of the extreme irritability that I had been experiencing from the steroids. He allowed me to cut the doses in half. I was taking 2 tabs before Chemo Day and two after. And, they injected me with some the day of the Chemo. I usually began to feel angry at any little thing a day or two after the treatment. This time  I have not had that side effect. So, that is well. The steroid is to prevent a rash.
I have been feeling pretty normal and have more tiredness than fatigue. As I have mentioned previously, Alimta causes extreme fatigue. I am learning to pace myself and I obtained a book from the Library that lists the best practices for dealing with fatigue:

Limit your activities; do only those things that are most important to you.
Take several short naps or breaks during the day.
Try taking short walks or exercising lightly.
Maintain good nutrition; try to eat a well-balanced diet.
Ask for help when you need it.   
(Lung Cancer, A Guide to Diagnosis and Treatment. c. 2012 by Walter J. Scott, M.D., Addicus Books, Inc., Omaha NE)

Last week I was able to participate in the Heritage of Flight Festival. I was in the Parade on Saturday and, also, clowned around and twisted balloons afterward and on Sunday. A new clown that I am mentoring, Vanngo, joined with me in all of the activities. We also clowned around last Saturday (the 20th): We went to a shopping center and vended balloons, stopped by a restHome and visited with some good friends, then went to Church where we were informally dubbed Fools for the Lord. The sermon was about Noah and how he must have been ridiculed by his neighbors when God commanded him to build the Ark! I consider a large portion of my Clowning a Clown Ministry--as I visit hospital patients, nursing home patients and shut-ins. And, the smiles I elicit when I am out and about are my witness to the Love that the Lord shows to us each and every day! In fact, the Pastor at my Church has asked me to speak about my Cancer experience in Church this Sunday. There will be some other speakers also.

 

Vanngo has the potential to become a very viable Clown! She has been doing very well and when I offer Clown Classes (hopefully) after the first of next year, I am hoping she will be an Adjunct Professor! She hopes so too, as I don't think she could afford the classes and shouldn't have to take out a debilitating Student Loan in order to attend! We plan to go out Clowning around tomorrow (today, Wednesday) and are going to try to have a regular route on Saturdays of balloon sales, social visits and Church...

 

 

 

I have been feeling fairly normal since this last Chemo. I haven't had extreme fatigue, but I have been pacing myself. I have been feeling an overall tiredness, but I have been motivated. I have felt groggy and foggy, but I have cut down my coffee intake to one cup of coffee per day--and I mix whole beans with decaf coffee. And, halving the steroid intake reduces my wiredness.

 

I hope to feel well and confident enough to find a part-time job. I could use the money and the activity/self-esteem. I would also like to be able to afford and procure a Canine Companion by Christmas, our beloved dog, Matty, having passed away just last Fall.

 

There is still not enough hours in the day to accomplish all that I want to accomplish...but, I feel that I am doing a lot better and feeling a lot more normal. It is coming along in bursts and burps. Soon enough I may be able to have a more ordered Life again !

 

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

3rd Alimta Treatment

I had my 3rd Chemo with Alimta Friday the 31st of August. I take Dexamethasone, a potent steroid to counteract a side effect, namely a rash, the day before and the day after the Chemo. The nurse also injected a dose of it before the Chemo. I told her that after Chemo I usually am awake for 24-30 hours. She said that I was lucky. Lucky? Yes, she added, most people are up for 3 or 4 days! Mercy!
I also told her that I was thinking of asking my Oncologist about stopping treatment for awhile. She noted that he probably wouldn't okay it unless I was having problems. My blood counts are very good and I am tolerating it well, so he would probably want me to stay on it. I am afraid that if I made the decision unilaterally that it might be harder to get back on it...or, God forbid, the cancer come roaring back and I would be having to play a lot of "catch-up"! So, I will discuss this with my Doctor, I trust him and he is always honest and very helpful to me. I will abide by his advice.
I got to Chemo at 8am and was out of there by 1030am. A man from my church, Bill, gave me a ride and stayed in the room with me. He got a kick out of me entertaining the nurses and staff as I entered the Ward. I made a napkin rose, balloon, gave out stickers, showed off my all-day oreo and JoJou the mouse and gave out over-sized ten-dollar bills.  Oh yes, and I gave them all kisses---Hersey Kisses!

When I left Chemo, I went to visit Gary and Susan for awhile. Susan was off with Linda working on my new Clown outfit. I visited Gary for awhile and then went home and got something to eat and visited with my wife. Then, about 530pm I went to Polo's Taco Stand and took some balloons with me. I was in clown character but there weren't any customers. I visited with Polo for awhile and then, as I was leaving, 2 families pulled up. I gave a little girl a yo-yo balloon and some stickers and I gave a boy and girl with the other family an alien sword and princess wand. I made a napkin rose for the father and told him to give it to his "esposo". He thanked me and said that he would be calling me soon to do a birthday party for his daughter in a couple of weeks!
After I left the Taco Stand I headed to a new business in town called Penny Lane Art Gallery and Coffee Shop. Susan and Linda were going to be there and also a blues singer named Doug Hart. When I got there, he was just starting his set. I went to sit with Linda and Susan and a friend of theirs, also named Susan. We all went to High School together. I didn't want to detract from the singer, but I very surreptitiously approached a young couple and gave away a yo-yo balloon and over-sized ten dollar bill and took their pictures with my Polaroid sticker camera. Then, Susan pointed out that their were a couple of kids behind our table, so I showed them JoJou the Mouse and they told me that it wasn't real. I told them it was and I stuck to my story. Then I made an alien sword and princess wand for them and took their pictures with my sticker camera.

I also gave a yo-yo balloon and ten dollar bill to an older couple at another table. Bruce E was at the Cafe and we sat and visited and listened to Doug Hart play several more songs. He was very good.
It was getting to be about 8pm so I decided to get Home. I had something to eat, i.e. two sausages, spinach, fritos a SoBe, graham crackers and a chocolate bar (Hamlet with peanuts). Then, my wife and I watched some Hannity and then Inspector Lewis on PBS (that we taped a few nights ago).
We watched the 700 club earlier in the day and a segment was about a young man that was a magician and contracted Acute Leukemia and it was really "blowing-up" his body. He called on the Lord to show himself and do something. Remember, this guy was a magician. He didn't ask for a healing, per se, he asked the Lord to show him his might, a miracle. The doctors had told him that his condition was rare and only 9 million people might be considered for a match for a bone marrow translplant. They later said they found only 16 matches and could only contact 10 of them !  Then, when they were able to convince just one of them to participate, he had the transplant. The doctors then called his wife out of the room and told her that it might not work and that he would go downhill very fast. Well, it worked! Praise the Lord !
I am going to go to Church tonite (Saturday) and I would like to go Sunday morning, but I know from experience that my Chemo usually kicks in with a lot of fatigue on Sunday near the afternoon so I don't usually manage it. But, I always try. I just am so thankful that the Lord has been through all of this with me and given me the strength and truth to manage it.
When you surrender your soul to the Lord and trust him, he will bring you blessings and Love beyond all understanding.
Life is Good...Life is an Adventure !!!

To Chemo or Not?

I will be having my next Chemo with Alimta this Friday, August 31st. I may have one more, I don't know...this past year has been a roller coaster of pain, fatigue and some normalcy. With Alimta, I have about 10 days of feeling normal. I have extreme fatigue for a few days after the treatment and then again for a week before the next one. I don't know how bad the cancer would be---probably pretty bad, but the Chemo really takes a toll on me. I am growing weary of it.
After reading other blogs and the forums, I have found that a lot of people dis-continue the treatments for a time.
I trust in the Lord and know that he has brought me healing. I also trust that he will give me guidance and wisdom for my decision. He has a plan for me whether it is on this Earth or in Heaven.
I have begun to get depressed and even pondered the idea to quit Clowning. Something that I don't want to do. I need to focus on finding another job to start paying my medical bills and to get back on my feet financially. It is hard to live month to month on fifty dollars. I tried to sell balloons, but that is not how I clown. It takes the fun out of it when you are clowning just to make some bucks and not to spread some smiles. I am sure that I spread smiles while I am selling balloons and I do have fun. At the end of the day if I have only sold 3 balloons and clowned for 5 hours then I feel like I am a failed businessman and not a successful clown. I would rather just be a successful clown. So, I will put clowning on the back-burner and go to work and when I find some free time, I will go back to Clowning.

Our Clown Alley had our meeting this last Tuesday at the Boss Clown's church. It is a huge church with a children's area that is themed to look like a movie theater. We had the meeting and then watched some videos of Red Skelton and Carol Burnett. It was great fun! And, we had popcorn and pink lemonade!

There is a parade this Monday, Labor Day, at the Kettering Holiday at Home celebration. I haven't decided yet whether I will participate or not. I love parades...but...coming on the heels of my Chemo and my worrisome mind, I don't feel like I would be able to give it my all. And, far be it from me to let down my clown buddies or my legion of fans...I just don't feel like I could cope with it mentally or physically.
I have been praying for direction and understanding. What will be, will be.
Tomorrow is another day...
Life is Good...Life is an Adventure !

SoBe lifewater

Well, this Alimta is not too bad...a lot of fatigue for a few days. But, otherwise, it doesn't mess with me like the other Chemo did. I had a few stabbing pains in my stomach from exercising too much. My shoulders have gotten really thin and I tried doing some sit-ups and push-ups. When my body tries to repair or strengthen tissue it signals the Chemo that something is suspicious and it attacks the process right away. They are tweaking drugs all of the time to try to keep them from targeting normal cells but I would imagine that it is very difficult to distinguish between fast-dividing/growing normal cells and cancer cells!
All year long I have been trying different things to get me through this. I have mentioned the Bath and Body Works product of Eucalyptus-Spearmint body lotion that helps with aching joints and peripheral neuropathy. And, the Swiss Kriss that is great for constipation and is all natural. Also, the Chemo changes your sense of taste and meat doesn't always taste very good so I have tried different fish and have also become a regular boiled-egg consumer. Beets and spinach and lettuce and tomatoes and olives taste fine. I don't drink milk anymore. I was constantly hunting for fruit juice that was not from concentrate. I know, buy fruit and make your own...I do that now and again.
Most of the juices and liquids and products that I have purchased in years past are now becoming infused with artificial sweeteners, so I have to spend a lot of time reading labels!
Early on I discovered SoBe Lifewater!
I had gone to a couple of Birthday parties and when someone offered me a bottle of water I was able to take about 3 sips and then I would choke if I drank more! It seemed that the water was just too thin. Carbonated drinks didn't have that effect, but there is way too much sugar in sodas and the sweetness is way too sweet for my taste buds! I tried SoBe and found it to be just the right viscosity and sweetness.

I like the Yumberry Pomegrante and fuji apple and dragonberry. I like all of them, in fact, but I find myself leaning towards the Yumberry most of the time...probably because of the name!
I started Chemo not knowing what to expect and it took several treatments before I was able to become accustomed to all of the side effects and how to deal with them. I read forums and blogs and talked to the Doctors and other people. A lot of the time I got an answer, "Well, everyone is different..." I do know that there are some commonalities though: constipation, hydration, fatigue and weird pains!
That is why I decided to keep this blog updated every step of the way. So that other people can know what to expect and how I am able to cope !
So, the lesson for today is if you want to stay hydrated and you want something that won't choke you and tastes just right and doesn't contain artificial sweeteners and a lot of other garbage -- grab yourself a bottle of SoBe and see if it works for you like it does for me ! This is unsolicited, but if I find a product that I think highly of, then I am going to shout it to the World !
Life is Good...Life is an Adventure !!!

2nd Round of Chemo--Alimta

Well, I had my second round of Alimta on Friday. It went well and faster, too. Last time it took 4 hours but this time it was only 2 hours ! That's an improvement. I looked at my blog from the 1st Alimta and I couldn't get any sleep for a couple of days. This time, I have laid down twice for a couple of hours and couldn't sleep--so I guess that is normal.The lack of sleep is because of the steroids they give me before and after the treatment that is to prevent a rash. I had a rash for several days before this last treatment. On my shoulder and then my back. The medicine apparently works right up until the next treatment.
I also felt like my head was warm, like a fever, but I checked and I didn't have a fever. I started feeling flu-like symptoms but they didn't last long. The extreme fatigue hasn't set in yet, but I imagine that it will by tomorrow evening. I will have to pace myself and watch out for it. It usually lasts for 4-5 days, I think. And then I feel pretty normal.

A woman from the church, Brenda, gave me a ride to my Oncologist on Thursday and then took me to my Chemo on Friday. I am so blessed to belong to a church that can help me with transportation when I need it. My wife has an irratic work schedule so she is not always available.
While I was receiving my Chemo, Marty the Clown stopped by and brought me a really cool shirt...clown shirt...one that squeaks...check it out:

                                      --------> click for video New Shirt

My next Chemo will be on August 31. I need to start looking for some part-time work. I wasn't able to work during my first round of Chemo this year (6 months) because it really laid me low. And, although I kept a good attitude, I know that it was in the back of my mind that things could go horribly wrong...that it could get away from me. I never got depressed, but I came close a few times. Cancer is a strong determinant of how you think about your life. I just kept praying for others and telling God that I was ready to go where ever he had a plan for me. Whether it was to stay on this Earth or to be in Heaven...or to Go to Mars !  Anyway, I made it through the first 6 months of this year and, originally, I thought I might not make it through the Summer. Now, I am hoping to make it to Christmas. According to my Doctors, I have responded well to the Chemo so far and have a good chance of going 4 or 5 more years. But, I will leave that to the Lord. I won't quit, I won't back down, but I will accept whatever comes my way...
I have been fortunate to enjoy a lot of Clowning so far this year. Most of it Volunteer or simply going out and sharing the Smiles. While I am looking for work, I will continue looking for Clown gigs and also volunteer wherever I am needed to do some clowning.
Life is Good...Life is an Adventure !!!!

Motivation

A good friend from our church came by yesterday to shave my head. My hair was getting to the point  where it was just a few wisps and I was tired of shedding. I was wearing bandannas and hats, not to hide my hair loss, but to keep it from falling out all over the house and making a mess. After she shaved it I gave it a cursory look and then we headed to an appointment with my neck surgeon. I took my dog, JoJo, who looks like a wig on an invisible dog leash. I tell people that it is what I have done with the hair that I have lost. Some people believe me, some think JoJo is a real dog and most have a good laugh. I also tell them that it is actually my hamster that I have to disguise as a dog so the cats don't attack him. 

The waiting room at my surgeon's office was fairly occupied and I had a good time sharing some smiles with the patients and staff. It seems that the clowning that I am doing nowadays is at Dr. appointments and chemo treatments ! I doubt that I could handle an hour or two gig, so these little forays into my own traveling circus are satisfying to me and to those wonderful people that I encounter along the way. One would think that people would react like: "What is that guy doing dressed up like that and clowning around?  Is he sick? Is he in denial. Doesn't he take his condition seriously?"  I have excellent Doctors and medical care and their staff is so professional. I have my Clown to share and I believe that it brings just as much healing to those around me as it does to me. I always thought my Clown would be curmudgeonly or poignant. I find, though, that Careful is getting happier, though. I can keep him in check...he is bordering on buffoonery, but he is just one, happy, carefree Clown for now !

The surgeon is, like my oncologist, very attentitive--spends plenty of time talking with me and answering my questions. I don't always have a lot of questions, but through the conversations I find my way in seeking answers. He seems to think that I am responding well with my chemo (as does my oncologist). He said it is good that my cancer has not spread and that I have a good appetite and that I don't have problems with swallowing or breathing. I asked him what it was doing to me. He explained what is known about cancer and what wasn't. He said the chemo was roaming throughout my body destroying anything suspicious that it could find. He gave me a fairly good prognosis. In that, I mean, when I first found out that I was advanced and at Stage 4 and had read a little bit about it I learned that the prognosis was between 8 months and 1 year. But, my Doctors seem to think that if I responding so well to the chemo that I would have several years to work with this. What shape and what energy level I will have, I don't know. I feel so fatigued and when I want to be motivated and useful, my body tries to fight me. 

I am just starting to feel the pain and side effects (minimal) from the chemo. They are annoying and are a lot of joint pain and uncomfortable. I feel like walking around and my knees hurt and I tire easily. But, I move around anyway. I try to sit or lie down to rest and can for about 3 hours until the pain medicine wears off and I have to get back up. I try to watch TV but it doesn't hold much interest for me. My wife and I watched a couple of movies last nite...one was too gory so we turned it off...the second was mediocre and I fell asleep...ha.  We have good conversations and eat well. Her sister is very caring and brought us over some great food on Sunday. Sloppy Joes, banana pudding, pasta salad, potato salad...great stuff !

Today is supposed to be full of sun and fairly warm. I hope to be able to walk down to the park. I'm sure I can get there...will be a challenge coming back. I still try to walk everyday. I don't try to push it, but I don't try to slack off either !  It feels like I am caught between trying to do a lot and trying not to do too much. I think I will coast a little this week and see what I am able to do. Last time I had my chemo, the joint pain and other side effects only lasted for 3 days. I am aware that there is also a cumulative amount but I guess I'll just have to find that out. 

Anyway, Life is Good and Life is an Adventure !!

Bad Hair Day

Well, it has finally started to happen...I got up this morning and bathed and combed and brushed my hair and everything was hunky-dory. Since I had a Dr appt this morning , I began to get dressed and after putting on my shoes I ran my fingers through my hair (as I am want to do) and, behold, I had a handful of hair. I tried my other hand to see if that would achieve the same dastardley result---more hair. My wife came in the room and I said, "Watch this, I'm losing my hair". I repeated the procedure for her benefit. I have a nice, sporty red/white wig that I guess I will be wearing for the time being. No, I did not wear it to see the Dr. I wanted him to concentrate on my appt.
He said that my neck mass looked very promising and that I should be having 5-6 chemo treatments. He also said that if the neck mass disappeared then it was likely that the tumor in my left lung would be gone too. That sounded like good news. We'll see....I trust him and I trust in the Lord.  He said that since I hadn't had nausea from my first chemo that it would be unlikely that I would experience it in subsequent treatments. He did say that I would continue to have the peripheral neuropathy )tingling and numbness in my fingertips for awhile...also, the pains associated with the chemo and the cancer. He said I was doing well. He asked about my appetite and I told him that I had a good time with food.
So, for now, things are looking cool. I think my walking exercises and breathing exercises help. Of course prayers and friends and family and Clowns are in my arsenal too !!!
Life is good...and, what an adventure !!!