I've come this far...

Back when I was diagnosed with NSCLC Stage IV in January, 2012 I briefly entertained the thought that it would be my last summer and that it would be a safe bet that I might not live to see another Christmas...but, I quickly told myself to stop thinking about such backward, negative things. I have made it this far and so be it.

                                     My good friend, Santa...I'll put in a good word for you!

I went back to Work a few weeks ago! I am working 2-3 days a week and it is going pretty good. They are very accommodating. I don't use my condition to slack-off, and they keep an eye on me to make sure that I don't over-do things or falter. It mainly involves light janitorial duties and driving a shuttle (car or van---not a spaceship!).
The other morning my car wouldn't start when my shift was over so I had to get a jump. On the way home I dropped the car off at the local mechanic which is just 3 or 4 blocks from my house/domicile. I decided I would walk home even though I had just finished an 8 hour shift. One thing I neglected to factor in, though, was that I had a hill to climb. So, I started up the hill and halfway into my trek, my legs gave out. It felt as if I had just finished a 26 mile marathon. I wasn't out of breath. My legs just felt overly tired and ready to buckle. I continued on and when I reached the top of the hill where it was level ground, I felt better. I could see a park bench (there is a park on the way) and I decided to try to make a landing on it. I felt that if I were to collapse that, even though it was 27 degrees Fahrenheit and  a lot of frost on the ground, the landing would be a bit softer than sidewalk concrete.
My phone began to ring. I soldiered on. Made it to the park bench and rested a few minutes before calling my wife (who had been ringing me). I told about my predicament and let her know that I would continue my journey as soon as I recovered well enough.
My chemo, the Alimta, works in the manner of starving cells that ask for nutrients. The Hill was over the limit of my apportioned energy. I waited 20 minutes, drank a bottle of SoBe Lifewater,  and, then continued my way home, knowing that should I collapse that it was rush-hour and, this being a small community, that someone would notice me and come to the rescue.
I made it home.
I had experienced the effects of the Alimta before when I was raking leaves, trimming trees, painting the house or climbing on the roof to clean the gutters. I had learned to pace myself. Of course, climbing the hill was a foolish learning experience. As I said, I wasn't out of breath and my heart rate did not go up. It is just that Fatigue sets in rapidly and the recovery time is lengthy.
Aside from that incident, I am doing pretty well. I have a severe, irritating pain in my neck that concerns me but I am not worried---just snappy and agitated. I have a PET scan scheduled for the 27th of December to see if any cancer has come back. The pain is in the same place at the crook of my neck and collar bone/shoulder that I had the neck tumor. And the lung tumor radiated pain to the same place and also to my shoulder. But, this may be a pinched nerve from driving so much. I have been trying to analyze my driving habits to see if I can prevent it. I seem to be able to move my neck fairly normally, but, occasionally I get a sharp stabbing pain that jerks me low. And, the pain is also a chronic, sharp nuisance consistently. My pain medication helps, but I try not to take any until the pain is absolutely, overwhelmingly an activity stopper. Even then, the medication only brings the pain down to a dull roar.
I say that it doesn't worry me--because it doesn't. It just makes me angry that I can't enjoy my normalcy!  The only thing that I am on guard about at this point is the cancer coming back and spreading to the brain. I don't care if it returns and spreads to the liver or kidneys or bone or somewheres (sic) else...I just don't want it after my brain because I need my mind to enjoy a good book or podcast or sight gag !
Anyway, Christmas is coming up and I need to start on my cards and shopping. No procrastinating!
I have some clown gigs coming up this week and, of course, work. It's nice to be back in the swing of things. Back in the thick of it. I want to devote more time to some Mars stuff, too. Tech Fest is coming up in February and I also want to give some presentations at the Library. So much to do. I will pace myself...
Also, I am attending a Bible Study about Intercessory prayer...we are involved with a book called, of course, Intercessory Prayer by Dutch Sheets. It is an extremely interesting, insightful and inspiring read. Prayer is a very important part of my life and always has been. And, Intercessory prayer is so important. Too often we might be overly concerned with our own problems and neglect some other areas. Praying for goodwill and blessings for others...praying for understanding and guidance...praying the right path and the right knowledge. I have always felt that constant dialogue with God and communication leads to more satisfying prayers. This Bible study sheds light on mediation and meetings and representation. It is an opportunity to be aware of, not just the theological attitude of prayer, but also the understanding that prayer is such a spiritual journey.
Monday I will be clowning around for the Rotary Springfield Christmas banquet for 140 children with multiple disabilities. I have been attending for 5 or 6 years and it is a wonderful time. Several clowns from our Alley will be there and we really have a lot of fun!
Life is Good...Life is an Adventure !!!

Twisting...balloons !

Went to the Holiday Open House at Wright State University for A Special Wish Foundation, Dayton, Ohio. Vanngo went with me, her sister, Linda drove her there. Our clown alley, Giggles and Grins, provides clowns for the annual event. Alto did a Magic Show and I saw Mickey, Sparklelee, and Lullabelle doing face-painting. Zilcho was twisting balloons. Plucky, Tindy Ducks and a few more clowns were wandering about. It was an awesome time. A Special Wish is a great organization and does a lot of events and grants many special wishes through the year. You can learn more about it here:  A Special Wish .

Vanngo did a very good job of handing Yo-You balloons to the children and blowing a loud horn and announcing the arrival of a "Princess" whenever I made a Princess Wand balloon for one of the girls. I also made hats and alien swords and dogs.

                                                       Vanngo and Careful

                                                     Alvin and the Chipmunks

                                                                    3 Clowns

I have been doing pretty good, feeling more normal. I am still tired a lot and get fatigued, but I am learning to pace myself. One thing though, I have been practicing driving a car again--after a year of no driving, and have noticed that when I do a lot of physical activity (I have been attempting to exercise more), even though I pace myself so as not to be fatigued to the point of collapse, I end-up with sore muscles that take several days to go away. It used to be that I could chalk that up to the age process. It seems more likely to be a combo of aging and chemo.

I made myself some liver and onions yesterday. I prepared the meal the way my mother used to make it. Caramelize the onions with butter and sugar and then lightly flour the liver and fry it in some butter. It came out really tasty. I hope the iron and nutrients that the liver and onions provide will help repair my sore joints and muscles. Although, the mechanism of the Alimta is to starve the cells that ask for nutrients.

I have noticed that I have lost several inches from my waistline. I haven't weighed myself lately, but my last visit to the Oncologist showed that I weighed 161 which has held steady since February. I weighed 180+ going into this whole ordeal, had a robust belly which I could do without. So, getting down to 160 or so is not a bad thing. I graduated High School weighing 158 ! Of course, I fear I may be losing some muscle mass. I will have to ask the Doctor how my body is supposed to repair and replenish itself when the order of the Chemo is to deny it !

So, everything is going smoothly. My next event is in December. Our alley provides clowns for a Rotary Christmas Banquet for Special Needs children in Springfield. It is also a fine time and a lot of fun!

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 !!!

Another Chemo

I had another treatment on Friday, 21sept2012...I was thinking that it was the 3rd one, but looking at a previous post, I see that it is the 4th, I guess. I should count them. Maybe not. It went really well. It only took a couple of hours from the time that I arrived. Afterwards, I went home and then decided to go out and about to visit some friends. Worked in the yard some and climbed up on the roof with a roofer to see if their was any damage from storms earlier in the summer. I was trying to use some energy in order to wear down the effects of the steroids. It seemed to work. I was able to get a nap in the evening and some real sleep later on.
Usually, after the Alimta treatment and administration of the steroids, I am awake for 30 hours. Of course, doing it the way that I did this time gave me some rest up front. Problem is, it has made my sleeping sketchy for the rest of the weekend. It is Tuesday morning and I have been sleeping off and on in bits of 2 hours and 5 hours.
On Saturday, I got a call from a man that I had met at the Taco stand several weeks ago. He wanted me to do a Birthday Party for his daughter. Sunday. I was aware that it was upcoming, though I didn't have a specific date, so I was able to do it. It was only one block away and there were about 40 adults and 25 kids. It was a fun time!
I wore the new Outfit that was designed and put together by Susan and her sister, Linda:

I didn't feel tired after clowning, but I have decided to take it easy for the next few days because I feel a little bit shaky. Always before, I have tried to do everything normal and ended up last time with a longer-than-usual amount of fatigue. Both the Dr. and nurses have told me that I have to pace myself. If I were working, I would probably have a better idea of that concept. Since my time is only realized by the different interests and tasks that I assign for myself each day, it is easy to get distracted and to sometimes do more than I should. I am going to try to formulate a schedule to follow each day and week to better utilize my time and to be able discern what I can and can't do...what helps and what wears me down. I would like to take one day a week to work on music, one for programming and computer interests, one for genealogy, one for Mars, etc.
I am so disorganized that I just make little lists of things that I need to do and want to do and then I try to do them all at once. I get some things done, but if I organized my time better, I am sure that I would get a lot more accomplished! I have been meaning to practice my juggling, too. So many things, but I know that if I just adhered to a schedule that I could get some real satisfaction of completing tasks. I think that I got into a mode of thinking that I needed to get a lot of things done because I didn't know how much time I had...ha..
Well, Life is Good...Life is an Adventure !    And, Trust in the Lord !

Still Clowning

I was invited to the summer picnic at AmVets Post 148 last Saturday. It was the second or third time that I had the pleasure of clowning at their event. It was great fun and I had the chance to wear my new clown outfit.

The E-Girls, Susan and Linda, have been hard at work making me this outfit. It has been a labor of Love ! I love the color orange, so it was a nice surprise. The first time that I tried it on and looked in the mirror, it made me smile and laugh. I am used to being a Tramp/hobo/misfit character. Some clowns have even said that I am a bit of an Auguste. But, this new outfit seems to change my character's personality a wee bit. It makes me somewhat sillier. With my other outfits that are a hodgepodge of tuxedo or bright sportcoats, I feel gruff. I enjoy arguing with the children. I have an "invisible dog" leash with a wig attached to it and the kids are always wondering if it is a real dog or not. So, that is always a point of contention. And, I have a mouse and a monkey in a blanket and they always want to know if they are real... Also, whenever a child requests a spaceship balloon or dinosaur or penguin, etc., I like to tell them that when I was attending the Klown Kollege of Komedy Knowledge that I wasn't feeling well the day they had the balloon classes and never learned how to make the different balloon animals and sculptures! Then, I proceed to make an Alien Sword or Princess Wand and try to force it on them. If they continue to insist on a particular balloon, though, I go ahead and make it! It's just that a part of my character entertains through interaction and a lot of the kids like to be vocal and silly. So, the banter is a big part of my act.

When I wore the new outfit, I wondered how it would manifest itself in my entertainment. It did make me a lot more playful and silly. I will be watching to see how my character evolves as I wear the new outfit. Since I look for every opportunity to clown around, I usually am wearing some clownish clothes and a hat and my red nose. I will save the new outfit for "official" gigs, I guess.

I was at the picnic for nearly two hours and all was fun and it didn't seem to tire me out. However, these past few days since my Chemo have been full of fatigue. I think that the Alimta must prevent my body from replenishing itself with energy, protein, carbos and calories if I have exerted myself with too much strenuous activity. If I am re-arranging things around the house or trying to do some repairs or painting there comes a point (usually after 20 to 45 minutes) when I just can't do any more. When I have exerted myself and used-up some energy, I am completely done! The only thing I can do is lie down for a few hours and let my body replenish itself gradually. It is frustrating, for sure.

Then, Monday nite I had problems with my allergies (ragweed, etc.) and when I went to bed I awoke a few hours later and was drowning. My system was manufacturing so much phlegm in reaction to the allergies and it was pouring into my lungs and I couldn't catch a breath. I got up and had some warm liquids and coughed and coughed and blew my nose constantly for an hour in a feeble attempt to breathe. I thought I was going to have to wake my wife and have her take me to the ER. In the end, I sat in my recliner and drank warm liquids and finally fell asleep for awhile.

I have asked the Drs. and looked for answers online to see how this all will end. I don't think about Cancer anymore...haven't for quite some time. My overwhelming thoughts are taken over by the effects of the Chemo and the extreme fatigue that it proffers. But, when I have an episode like the allergies or when I felt that I was getting a cold and worried that it would turn into pneumonia, I think of Death. We all have to die sometime and it could happen in an accident or a heart attack without warning...I know all that. It is just that when you have a diagnosis of Stage IV cancer, you know that your time is limited and you wonder it the end will be with a lot of cancer pain or eating away or organs failing--or what?  I surmise that my time will end somewhat peacefully due to pneumonia or an inability to breathe due to allergies and lung congestion. I guess I should talk to my oncologist to see if there is a way to prevent that!

Anyway, I am glad I was able to clown around at the picnic and it didn't tire me out ! I really want to do more if I can find a way to circumvent this energy-draining thing. If I can just get to a point where I know which days I will be normal and energized. I know that the first few days (this time it has been a lot longer, maybe I need to stop trying so hard!) are rough but I usually get back to normal by the second week.

Well, 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 !!!