The Good Bad and Better

This installment is in two parts...the first part is a recount of the past few days and the effects of Chemo. When I started to evolve this blog into my Cancer Blog, it was to show what a person goes through when they are diagnosed and then treated. I didn't know what to expect and found a few blogs online, although I imagine there are hundreds. I had some friends who either went through this or had a loved one go through this and they were very helpful. So, I wanted to document my experience in hopes that it would help someone else out there to get to know what to expect and how I have been dealing with it.

The second part of this installment will be a recap of our Clown Alley's Birthday Party, so skip to Part Two if you don't want to hear about my tribulations of the past few days...

Part One -- I shoulda slowed down

After my last round of Chemo, I felt pretty good. I knew that I had a couple of days before the side effects usually kick in and I got to do some clowning around. I clowned on Saturday for the local Amvets 148 and then went uptown and, basically, handed out stickers and let people take my picture and visited some businesses to share some smiles. I started to get tired so I relaxed Saturday nite and most of Sunday. On Monday I tried to do some walking and socializing and began to feel some joint pain and fatigue. Tuesday brought more fatigue but I was looking forward to the Alley Birthday Party so I picked out an outfit and went to the Gala.

On Wednesday, I waited until I felt fairly strong and then went to visit some friends for awhile. I had driven my car uptown because I am still trying to sell it and planned to walk back home. When it was time to get home I started walking and the joint pain started really acting up. Also, my left foot decided that it didn't want to cooperate so I was afraid I would stumble and fall. I began to lose energy and called my wife to come and get me. I was only two long blocks from home but I didn't feel that I could make it. I stayed in the rest of the nite and tried to eat something and rest.

Thursday I awoke and was doing fine. My wife had to go to the store and I was doing all right when all of a sudden I began getting abdominal cramps. I was super constipated. I spent the next two hours trying to get some relief. I have a bad back, also, so the constipation and cramping aggravated my lower back and hips. I couldn't stand, sit, walk or lie down. I called my wife and asked her to pick me up some Fleet suppositories. I  have never used them so I called some friends and asked about them. When my wife got home I tried one and lay down but couldn't get comfortable. The pain kept getting unbearable. I called Urgent Care here in town and talked to someone who was very nice and helpful. They said to go to the emergency room in Huber Heights if I couldn't get relief. I was panicking and having trouble breathing and was in distress. My wife was able to call my oncologist and talk to him. He told her to pick up some Magnesium Citrate and I was able to talk to him for a few minutes, although I don't remember the conversation. I just remember that he was able to reassure me, which was what I needed. Finally, I was able to lie down--mainly out of exhaustion and surrender. I slept for awhile and when I awoke, the cramps returned and after what seemed like forever I was able to get some relief. I am still exhausted and the joint pain and peripheral neuropathy are present but I am able to sit up. For the next few days I am going to drink a lot of water and eat some clear soup and maybe jello. My appetite has been good but I need to watch out about eating solid foods. The constipation is opiate-induced and although I was doing pretty good, we had bought a ham loaf and I was eating everything that I got hungry for. The last couple of weeks I have had a bitter taste in my mouth and nothing has tasted that good, but I have been trying different foods to see if I get my taste buds back in line.

So, for now, I have some relief and am going to take it easy for awhile. I was supposed to volunteer at the library this past Wednesday, but I knew that I had been pushing it too far. I need to concentrate on more moderate exercise and not do too much for now. I don't want to completely relax, but I have to show some common sense, I guess !

Part Two -- The Party

To socialize with a group of Clowns is a very satisfying and exciting event. I was really looking forward to this year's Party !

Stan the Magic Man was the evening's entertainment. Stan is a retired Sheriff's deputy and he peppers his magic show with inspirational and motivational messages. One bit that I particularly liked was when he asked for a volunteer (Mickey's daughter, Scooter) and showed an oversized box of playing cards and asked her if she liked card tricks. He then proceeded to pull a rope from the box and say, "Sorry, this is a rope trick!"
It was great to see so many clowns. I am pretty tired right now and am going to lie down, but I will post a few pictures and then continue this blog tomorrow...

Zilcho

Sparklelee

Buttons

Feel N Lucky

Folly, Plucky, Micky, Buttons

Until tomorrow...Life is good, Life is an Adventure !

3rd Round of Chemo

The 3rd round went off without a hitch...I started with pre-meds (to counteract side effects) at 9am and finished the chemos at 3pm.  The nurse was great and answered all of my questions. Last time I had a pain in my left wrist for about 10 days. She said that the IV was probably in a "bendy" vein...medical jargon for something. The wrist was never discolored or swollen. It just hurt like I had bumped it on something. So, she tried a vein in my other arm. As the anti-nausea med was coursing through my vein, I felt a strong pain...a sting, burn, a sharp pain. It lasted about a minute or more. And, then she noticed that the vein had "flared". It turned reddish-brown...maybe salmon. She called the supervisor over to show her and to get authority to stick another vein. So she used the other arm and finished the pre-meds without incident. I slept off and on, getting up every hour to have a pee. I asked her about wearing light make-up for some volunteer clowning and such. She said it should be okay, but reminded me to watch the audience and if I see someone coughing or sneezing that I should back it up.  I had forgotten that my immune system is at risk. I still have a fairly strong one and my blood counts are all good, but she said that exposure to sick people could dramatically lower my immune system. I have been trying to be social and go out as much as I can, but I guess I need to exercise a little bit of caution....I need to be Careful, Careful !!!

Considering what most people go through I am pretty blessed. I have pain and a lot of fatigue,but I don't have nausea or shortness of breath or coughing. And, my appetite is fine.

I think that walking everyday and socializing is good, but I have to remember to tone it down until I am finished with my Chemo treatments. I don't want to over-do things and then have the Chemo or the Cancer take advantage of the situation and try to knock me down !  I am blessed with wonderful Doctors and nurses and family and friends. I am blessed with the Church and the prayers and fellowship. I am blessed with all of the Clowns that lead the way with their Laughter and Smiles !!!  And, I trust in the Lord !

Life is good, Life is and Adventure.

Chemo Brain

Well, I finished harvesting the Red Noses from my Red Clown Nose Trees yesterday afternoon. I planted them in November of last year and I thought that they came up pretty well although I was expecting a larger crop. There is a link to a video with some tips and instructions on planting your own. Last year I planted Rubber Chickens (the video for that is also on my YouTube channel) but I thought that I would try Noses this time. What next ? Maybe some of each and then I might try to plant some Assorted Noisemakers. I hear that they produce like wildflowers.

The reason I decided to do the harvesting today is because I felt like I have been in a fog the last few days. This 2nd round of Chemo was manageable but lasted longer with the side effects. The pain wasn't too bad but the fatigue was heavy. Also, I have been having trouble with my eyes. My vision is about 80% with or without glasses. Also, my thinking is foggy and I write myself a lot of notes but I am having unusual memory problems.  Sometimes I get to the end of a sentence or try to remember a name or word and instead of trying to remember or even getting frustrated with being lacking, I just pass it off immediately and carry on. If I am talking about a news item and the person (famous) is hard to picture or vocalize, I just go on with the story and don't worry if anyone knows what I am saying. Same way with missing a word or two. Usually, when you are grasping for a word you pause for the audience to fill in the blank or else you riffle through the pages of your mind for the word or it's equivalent. Also, on my walks or forays to visit friends or businesses, I feel as if I am not quite all there. Like the proverbial "under-water" feeling...

I also had one or two spells of waking up and feeling like I had a burp caught in my upper chest, before the throat and I couldn't get it out and I could not exhale or inhale. I jumped from bed and stumbled a few paces until, finally, I could breathe. That happened once early on, several weeks ago and I was just sitting an d watching TV and noticed that I wasn't breathing and couldn't breathe. It didn't cause a panic---but it caused some major consternation as I had never experienced this before. I know, I am going to alert my Doctor to this. I commonly have burps that just don't want to show themselves. Oh, well...I'll see what the Doc says.

I walk often and it is tiring but also invigorating. It strengthens me. 

So, when I started experiencing this Chemo Brain, I looked it up. I had heard of it from a couple of clown friends who were familiar with it. I walk to fight fatigue and to gain strength and endurance....so, it is only natural that I would come home today and decide to record a video. Keeping active mentally will at least, I hope, let me muddle through this muddle they call Chemo Brain...and I have heard that it passes some time after the Chemo has ended. Well, enjoy my little Gardening video. Life is good and Life is an Adventure !!!

Red Clown Nose Trees video

Alien Thoughts

Most every night I go outside and look at the sky. Although we are away from most light pollution, we still have some and I can only see the major stars, planets and constellations...not the vast sea of stars that one might see in the Rockies of Colorado, say. I can see Mars, Orion, Gemini, Jupiter, Mercury, etc. 

Tonight, as I stepped outside, I startled a rabbit. She scurried across the back yard, under the fence and into the neighbor's back yard. She is out there most nights. I remember when our dog, Matty was still alive, she would play with the rabbits, squirrels and birds. They coexisted.

That led me to think about Aliens in Outer Space (yes, I think of such things) and how we try to portray them as exotic creatures. Some friendly and spiritual and some that are maniacal and threatening. 

After we sent our first probes to Mars and failed to find the little green Martians, we have begun to look for microbes or water or exotic microorganisms. So, it is either Alien human-like beings or Alien amoebas, rotifers or parameciums.

We rarely take into consideration the fact that another planet might have intelligent beings with pets and flowers and wild animals...the total diversity of life that we harbor here on Earth. Will a being on another planet keep animals for eating? Will he keep some as pets? Will they have zoos?

I pondered that briefly as I watched the rabbit steal back into the yard and I thought of Matty. I thought about when the first humans arrive on Mars. I can imagine a Martian explorer stepping out of his habitat after a night on Mars, looking up at the sky and muttering to himself, "I wish my dog was here..."

Pushing Through

I have another wig...found it in the laundry room...don't like the color, though...my friends Suzi and John suggest that I soak it in beet juice for a pretty pink...or lavendar. I need to style it also...or add some accessories.

This past week has been all right. The first chemo gave me side effects for 3 days...mainly flu-like and different pains. This time it was mainly fatigue and has lasted 5 days so far. I visit some friends,Gary and Susan nearly every day and my knee joints have been aching. I haven't walked much because of the cold weather, but Thursday I walked back home from their house (about 1/2 mile). I thought I wouldn't make it because of the fatigue. The knees stopped hurting after the first two blocks and continued to be fine all evening. Walking is a good exercise as it seems to lessen most all of the pains. They bounce back, but the exercise certainly helps. Today I noticed the fatigue abating. I usually keep a list of things to do-- mainly menial, but important, stuff like: phone calls, housework, organizing bills and the messes I have in my rooms--what with all of the clown stuff and books and what-have-you. All week I was only able to do 2 or 3 things while today I felt more energy and made a lot of phone calls and housework, etc.  

I have a place on my left wrist that has been bothering me for several days. I think it is where they had an IV in me. There is no bruising or redness at all and the pain feels like when you bump your wrist bone hard on something. It's a nuisance. My bald head feels cold and sweats a lot. I tried running an electric shaver over it but gave up because I found it too funny for some reason. It seems like I haven't had to shave my face although I have tried. I don't know if I am cutting the whiskers with the razor or just knocking them off !

I am going to get out my bag of lost hair this weekend and fashion a dozen or so moustaches. What fun! Wigs, stick-on mustaches, red noses...I may be turning into Mr. Potato Head !!

It's been pretty windy...too windy...well, it is March !  But, I received a remote-controlled pigeon with flapping wings and great bird chirpings that I haven't been able to play with ! Patience, Pigeon !

I didn't have much of an appetite all week but I have been eating well. At least I don't get nausea.

I have an inflatable saxophone that I need to assemble this week also. I have plenty of sheet music around the house. The saxophone is lime green and I hope to practice with it and be able to perform a 3-4 minute song...jazz/swing/bebop...with a phantom 6-piece combo...I will,of course, post a video.

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 !!

2nd Chemo

My good Clown friend Marty took me to my 2nd Chemo on Friday, March 2nd, 2012...we got to the Hospital at about 8am and they told me  that I wasn't in the computer. They asked us to wait in the lobby...we entertained them first then proceeded to the lobby.  In the Lobby
After about 10 minutes, they came and got us and said that they had found my appointment. They led me to a room and began the therapy. Their were two beds in the room and another patient came in for their therapy.  Marty had a loved one who underwent a lot of Chemo, so he was very helpful and talking about it and then clowning around.
The nurses started pumping the side effect medicines into me and one of them is benadryl, so I promptly went to sleep. I was half-awake though and it was decided that Marty would go home and come back in a few hours. The nurses thought that it would take about 4 hours, so that meant I should be done by 1 or 1:30. I awoke at 2pm and asked the nurses how much longer it would be. They said the one med was almost through and the second would take about 1 to 1and a half hours...making it 3:30pm when I would be done. That is the same amount of time the 1st chemo took and, yet, everyone had told me that it would take a lot less time...go figure. So, I called Marty and left a voice mail asking if he could come by around 4pm; and, if not, I could call someone else.  As I hung up, Marty came walking in.
We had a good time clowning around and I took some Hersey Kisses for the nurses. I took my dog and everyone got a kick out of him, JoJo.
Just happened to remember....I have received a lot of cards...the other day I got one from the TechFest Team !!  I always like to participate in the Tech Fest at Sinclair College in Dayton. I volunteer with the Mars Society and I tie a lot of balloons---Alien Swords, Alien on a Stick...Couldn't make it this year because of my condition...I was really disappointed. So, when I received the nice Get Well Card with some "hopes and prayers", I was touched...to the point of tears...it is little things like this (Big, actually) that really make a person's day !!!  Thankyou, TechFest !!!
I came home and took some anti-nausea medicine and then I went to lie down. My joints were aching but, other than that, I felt fine. It is now 2:20 am and I had a nice Turkey dinner at 11pm and some Moose Tracks ice cream. I feel fine and am ready to go back to bed and listen to Bob and Ray...radio podcasts.
Last time I had chemo, I started to get a lot of random pains 3-4 days later and they lasted 3 days. I'll see what happens this time. The Doctor was pleased with how the treatment was doing so that is a good thing.
My wife finished a class yesterday and got a certificate, so I am proud of her and we will spend some quality time tomorrow and all week.
Life is Good...Life is an Adventure !!!