The Endgame

I went to see my Doctor this past Thursday to get the results of my PET scan. I had read that when people finish their Chemo treatments, they sometimes experience depression because of the lack of attention that they had been getting during Chemo...of course, I have had such great, ongoing support from my family and friends, my church, the Clown community, the Medical community, Facebook and, of course, the Lord ! My only concern after my last Chemo was that I wanted to be able to regain my energy level.
I remember how I had to sleep in a recliner for 12 weeks or more, beginning in December of last year and how I couldn't wait to be able to lie down, to roll over and stretch out and to sleep longer than 3 or four hours ! And, the Chemo wreaked havoc on my body and energy. I tried to exercise and rebuild my muscle tone and body mass. The Chemo had other ideas. It targets normal cells as well as cancer cells. So, when you are trying to get some muscle tone, the Chemo attacks you. I would be walking around the house and it would feel like I was stepping on a tack now and again. If I did stretching exercises and resistance exercises, I would experience stabbing pains in my side, my stomach, my arms, my chest. I knew what they were. The Pac-Man Chemo undoing the work I had been trying to do to rebuild my body. It was a delicate dance.
I weathered the Chemo pretty well. And, although my doses of pain medication fluctuated wildly, I didn't overdo it or depend on it. After a Chemo treatment I might have to take my pain meds every 2-3 hours for a week to feel better. And, then I would go back to every 5 hours for a time. Then to every 3 hours (which seemed to be best for me). Lately, I have been going 5-7 hours between medication. Occasionally I have to go back to every 3 hours. They say that it is not good to chase pain...and, that is true. If I go 7 hours without a pill, it takes a while to get back to being pain free. The pain is mostly in my neck from the biopsy. It feels like a hand has grabbed the side of my neck and is trying to twist a part of it out. And, that makes my shoulder throb. But, I have been trying to see how long I can go without the pain medication--with mixed results.
So, back to the Dr. visit...I went there feeling very upbeat. The friends that gave me the ride were going to let me accompany them to see their sister who is in rehab from a double knee replacement. She is also a long-time friend of mine.
When I got to the Dr. they ushered me into the lab for a blood test, which surprised me. I hadn't expected it. But, I always joke and clown with the ladies in the lab and did so this time. I gave the woman who stuck my finger a clown sticker and a clown nose. She remarked that she had seen the pictures that I had sent to the office, thanking the Dr. and staff for their fine treatment of me and their compassion and professionalism.

 Then, I went into the Dr's office. He said that the PET scan showed me to be cancer-free...
(from the report): "Many of the lung lesions are no longer present and the ones that were present have benign uptake values...No definite new lesions are identified."
He did say, however, that my type of cancer was shown to come back and to present itself in different ways or areas. So, he was going to start me on a new treatment regimen with a drug called Alimta. I would need to take B-12 shots and take folic acid and another drug to prevent skin rash. He wanted to start me on it right away. He asked me if I wanted to think about it. I did, but I told him that I would tentatively start on July 21st. The office then set me up an appointment for a few hours later to get the B-12. I was in shock. And, riding with someone else. I told them I didn't feel like walking home, that it was 20 miles away and that I would call them later.
I left the office totally bummed out...mostly out of consternation. I should have talked more to the Doctor, but I was in shock. I was looking forward to regaining a normal life...to regaining my energy levels. I asked him how long I would need the treatments. He indicated (unspokenly) that it was undetermined. He did say, however, that I would be on the treatments indefinitely unless he decided to stop them.
I went to visit my friend and then came home. I told a few people of the new development. Some responses were, "If you are healed, why go for more treatments?" And, of course, I read how some people forgo treatments and live a long time. And, some people do well with the treatments, some don't. It is an energy killer so that is why they give you folic acid and B-12 and steroids. Also, I read that this type of treatment needs to be started right away after a typical Chemo regimen.
The studies I read said that it increases a person's lifespan by 2-3 months over someone that had a placebo. Some people have been taking it for several years. Some couldn't tolerate it.
I have decided to start with it. It might mean going back to feeling the roller-coaster effects that I had with the other Chemo. I trust in the Lord's healing and the medical treatments. I accept my healing. But, I also feel that if the cancer is going to try to come knocking on my door again that I should make it difficult for it to enter. I also feel that, by undergoing this further treatment, more can be learned so that other patients will have better knowledge. I will try the stuff and stop it if it becomes too much for me. I won't look for an easy way out, though. If I have to go through another year of difficulty in order to gain more time, I am all for it.
I have been praying unceasingly. Not for me, but for others. For people with problems...for people without problems. For blessings for all. For wisdom and fairness and compassion from the Leaders of this world. For an end of suffering for those in War Zones. For lots of things. But, I have told the Lord that he has the promise of where he needs me...Heaven or Earth (or Mars).
On Sunday, I plan to participate in a softball tournament. My friend, Gary, has always coached teams and has entered his family and friends and neighbors in this tournament. He has called the team, Fenton's Follies Featuring Careful the Clown ! That means that I get to clown and I will surely get to bat at least once !

On the 3rd, I plan to be at the Fairborn Block Party to do some Walk-Around clowning. Then, on the 4th, I plan to participate in the Fairborn Parade.
Next weekend, the 6th and 7th, I plan to be at the Dayton Airshow with the Mars Society. I have been there several years and sometimes I twist Alien Swords and Princess Wand balloons. I talk with the attendees about Mars Exploration. The Mars Society always has an excellent exhibit.
So, I have a lot planned between now and the New Treatment on the 21st. After that? Who knows...with the Grace of God I will be able to get back to some gainful employment. I look forward to the day when I can be Clowning with Gusto! (Gusto is not another clown...). I have billed myself as Almost Famous..and then, Nearly Famous. I have joked that I am unsure as to whether I am eligible to attend a Cancer Survivor event. I would like to forget that this whole thing ever happened!
One thing is certain, however--Life is Good, Life is an Adventure !

Energy Outlook

"When you are in the valley, keep your goal firmly in view and you will get the renewed energy to continue the climb." -Denis Waitley (an American motivational speaker and writer, consultant and best-selling author).
I am finished with Chemo for now. And, as I mentioned previously, I was apprehensive about this week because I usually have a falling energy level as a Chemo session approaches. But, guess what? My energy level has remained normal. Of course, normal is relative. If I am clowning, I am energized. When I try to go for a walk my energy level drops rapidly. Yesterday I tried to clean some weeds from the driveway and I did pretty well without overdoing it. My wife brought me some water and I worked on the weeds for probably twenty minutes. Afterward I sat down and was very tired. Not dangerously tired, but worn-out to be sure. I was proud of myself and happy that I may be able to help a lot more around the house.
I had a PET scan last Tuesday and will get the results next Thursday (the 28th, June). I have done well with the Chemo and have received and accepted the Healing from the Lord.
My feet and legs pain me and the feet tingle quite a bit. The Chemo is the cause of that. I have had a few instances of a kind of apnea while awake and will ask my Doctor about it.

 I went to a Dance recital that one of our Clowns (Mickey) was in (along with his daughter, Scooter) on the 15th of June. He had requested the participation of as many clowns as our Alley could muster to greet the attendees and pass some stickers out to them. There was a good showing of Clowns. The group that I went with, Buttons and Mr. Buttons and Good Grief, stayed for the first 15 presentations and then we left at the first intermission. I became engrossed in the performances and twice I noticed that I had stopped breathing. It is an odd and curious feeling. The automatic breathing that we are born with just seemed to turn off! When this happens, there is nothing that you can do. I experienced it earlier this year and found that it is impossible to will yourself to breathe! You just have to wait and see if it starts back up...I know that it sounds terrifying, but it is not. I grew up with severe asthma and when you can't get enough air into your lungs and they are in spasms and you are also coughing--THAT is a panic! This apnea is just an awareness that you are not breathing and it seems as if your lungs are paralyzed along with your chest so nothing can be done about it. You just wait and hope that it restarts itself!
Anyway, I am glad that I haven't been experiencing the fatigue that I usually get in the 3rd week after Chemo. And, I pray that it holds so that I can gradually (gradually!) begin enjoying normal activities.
I have a new look. I am going to be wearing a white, former military dress coat and a small orange top hat. And, my good friend, Susan has made me two over-sized neck ties and a glittery, colorful bow-tie! I am making some medals for the coat and plan to sew them on this weekend. I have already made some epaulets for the coat and affixed them. Below is a picture of the beginning of the new look:

The 4th of July Parade and Block Party is approaching fast and I am looking forward to it! The Block Party has been moved to the community park this year because of downtown construction projects. So, I will find myself a nice shade tree and park myself and twist some balloons. I love to do Walk-a-round Clowning, but I will see how it goes. As far as the Parade, I will find someone's vehicle to ride atop and then walk every now and then--as needed!
Get your info about the Parade and Block Party----------HERE
If you are in the area, come on by and make sure to look me up ! I'll make an Alien Sword, Princess Wand or Hammerhead Shark for you ! (out of balloons, mind you).
Life is Good...Life is an Adventure !!!

When I'm 64

Today is my Birthday and I feel pretty good...considering. I always thought that when I reached my 60's (I'm 64 as of today) that I would write the books down that I have been carrying around in my head all of these years. I would get back to my oil painting and I would knuckle-down and work hard until I hit 80 ! I never dreamed that I would become a clown. It has certainly defined me, though.
This year my clowning entered the realm of Doppler shifts...I was clowning in Parades and at birthday parties and block parties and at charity events. I enjoyed visiting patients in Hospitals and I loved going to Nursing Homes. But, that was Last Year !
The big Doppler Effect smacked me in January of this year. The Doppler Effect, you will remember if you took Physics in high school or University (I never did) was named after an Austrian physicist, Christian Doppler in 1842 and had to do with the frequency of waves (light and sound). If a fire truck comes roaring down the street you will hear a change in the siren as it approaches and then races by and down the road.
That pretty much typifies my clowning this year. I couldn't schedule any events or appearances because I never knew how I would be feeling. There was no order in my clowning. So, whenever I felt half-way energized I would staple my nose on and grab my hat and stickers and go around town visiting friends and businesses and passing out stickers and a clown nose or two. Just to cheer people up. Because it cheered me up! It made me feel like I still could be an asset to society. It became a lifestyle instead of an avocation or professional appearance. I was the Town Clown ! I didn't busk. I didn't stand on street corners and twist balloon animals. I simply made my rounds and let people know that somebody wanted to see them smile!
So that has been the first half of this year. I wonder what the second half will portend? I haven't been in any parades yet. The first opportunity will come on July 4th. I am really looking forward to it. On the 3rd of July is a block party that I would like to appear at also. I don't have any more Chemo Treatments. So, it should be a safe bet that I will be feeling enough energy to be involved in these happenings!
Last week was a disaster. I had planned on visiting a friend in the hospital. I had made a date to participate in the Relay for Life, locally. And, I had arranged a ride to go to a Street Fair in a happening town about 15 miles away. Missed them all!
Since the Chemo chemicals have apparently gobbled-up all of the apparent cancer cells, they decided to go after my normal cells. I always experience a mild Peripheral neuropathy in my toes and fingers. This time it spread about my entire hands and feet. When I would go to wash my hands, even though I was using tepid water, it felt scalding. And the bottoms of my feet felt like I was walking on hot coals. Add to that the knee pains and all of the other stabbing pains and I was having a hard time getting around in the house--let alone trying to go anywhere. Usually it only lasts 3 days after a Chemo. This time it lasted 8 days.
Yesterday I got out and about for a while and I am feeling fairly well right now.
I still consider myself blessed. My oncologist, Dr. Safa, and my surgeon, Dr. Zeller, have been very positive and caring towards me. I have read several cancer blogs where they mentioned that their Doctor told them to start planning their funeral or that the treatment was not going to work. My doctors have never mentioned a prognosis, either. Other than to tell me that I had responded very well to the Chemo. I remember telling my doctors that I had read that Stage IV would yield only another 8 to 12 months of life. And, if I made it to 5 years that only 4% of patients got that far. They looked at me like I was sorely mistaken and counter-productive. They said that the only thing for certain was that I would enjoy many good years ! So, I am blessed to have such skillful and compassionate medical people in my corner. And, even when I wanted to arrange a payment plan for their services, they told me to not worry about it and to go about getting better and better.

from my donations site

I am blessed by the Lord. And, the church that I attend. The church has graciously gotten me to my appointments when my wife had to work or had a job interview. It means a lot when you meet people who are so giving and caring. That is one of the main reasons that I have to get better. I need to get back to the Nursing Homes and hospitals. I need to be attentive and available when someone that is having a hard time needs some help--that I can offer some assistance. In the world of the Caring Clown, or Hospital Clown, it is not necessary to be a rowdy clown or a clown that is seeking laughter. Sometimes it is merely being there to listen and to share some smiles.
Clowning is an art form. It is entertainment. But, for me, it is a lifestyle. It is part of my nature to recognize the foibles and feelings and failings. Then to turn them around to a positive experience so that we can all smile at the fact that bad times can turn into good times!
Life is Good, Life is an Adventure...!  And, I am anxious to tie on my big shoes and go pass out some smiles !!!

Rain or Shine !

Unchartered Territory

Friday, June 1st 2012 was my last Chemo Treatment. Went to Church Saturday nite. On Sunday, I was up at noon and went to visit my good friends Susan and Gary. I stayed for a couple of hours and then, feeling tired, headed home. Usually the side effects really kick in on a Monday, but they are a day early...probably due to a relief that it is the last of the treatments, probably the build-up of some stress as to what to expect next.
My side effects have been fairly predictable and I still consider myself fortunate that they are not as bad as some people must experience. I find that my feelings in regard to the side effects are consternation, curiosity, some frustration in not being able to do things I would like to do. Since I lost my eye lashes, it seems it is hard to enjoy TV. After they grow back in I will see if my vision improves and I imagine that I will need an eye examination. I tried eye drops and they only work for a few minutes.

I have slept a lot today, Sunday...it is Monday 227am now and I am ready to go back to bed. My knees were hurting and my feet, but I use Eucalyptus/Spearmint body lotion (Bath and Body works) and that always brings relief. The bitter taste in my mouth keeps me from enjoying much food but I had some potatoes, ice cream and romain lettuce with black olives and olive oil dressing. It didn't taste very good but I imagine that it was a nourishment. And the Sobe Yumberry Pomagrante Life Water with seltzer water whet my whistle.
I see my surgeon tomorrow afternoon and will ask him about how long it will be before I start feeling energized. Of course, I am having a PET scan soon and another oncology appointment that will set the course for the rest of the summer, I'm sure.
These past six months have been tedious--not treacherous; have been a blur and a bummer. But, they have enlightened me as to how I can deal with a dillema like this cancer. Our bodies break down as we age and we expect some bumps in the road. But, when cancer rears it's ugly head, the numbness, realization, fear and major uncertainty can really knock you back.
I remember the first time I saw my oncologist and expected him to say that the Lung Cancer was advanced but in early stages and it could be treated with positive results. I had just read the Stages of Lung Cancer and when he said that I had Stage IV, it knocked me for a loop! I really didn't want to know anymore about it...didn't want to research it or find out more. I just began the treatments and wondered about it. Then I read some cancer blogs and learned courage.
A couple of weeks ago I read a brochure that was telling about how cancer survival rates had improved and it listed the different types of cancer and their survival rate increases since the 70's. My cancer was 4% surviving for 5 years....then I listened to a podcast about lung cancer and some new diagnoses techniques and treatments and they thought they could get it to 15% for 5 years. Not real good odds at all.
And, the main thing that I hear over and over again is that everyone is different and results vary, etc.
I am not discouraged. I am not fearful. I am not steeling myself for a major battle. I am just biding some time until I can get enough energy to Clown again and to study this cancer thing so that I can share information for others. I am waiting, patiently, for a return to enough normality that I can help others. My trust in the Lord and the fine support of everyone has assuredly seen me through this. I only hope that I can dedicate my time to do the same thing that people have done for me. Knowing that you are not alone and that people care enough to ask if you are doing OK is a major help.
So, now that my treatments are over, I have a new vista opening up: How much can I do? and When?

                                           My shoes are waiting for the First Parade !!!
Life is Good...Life is an Adventure !

Online fundraiser

I've put up an online fund-raising site for medical expenses...

                                                                           Donations...gofundme  

Last of the Chemo !

Friday, June 1st was my 6th and final Chemo. From previous experiences, I know that I will start Monday with the side effects of roving pains and diminishing energy levels. I have found that starting the day with a boiled egg gives me enough energy to go visiting for a few hours. I usually get a bitter taste in my mouth and the things that have always tasted good---don't taste good anymore, e.g. cinnamon rolls, ham loaf, hamburgers, pizza, toast and jam, etc. I eat romaine lettuce with paul newman olive oil dressing and pickled beets and parmesan cheese. I have soup and I eat baby food: turkey and rice, sweet potatoes and oatmeal and fruit.
As for liquids, I used to drink Sunny Delight because it was the only orange juice that didn't give me acid indigestion. But, I found that it contained the artificial sweetner, sucralose, so I stopped buying it. I stopped buying fruit juices because half the time they contained sucralose or else they were from concentrate and had a lot of artificial flavoring and colors and preservatives. I stopped drinking Gatorade because they began adding sucralose ! I used to buy an occasional 5-hour energy drink but, they too, added sucralose! Bummer !
I bought Grapefruit juice because it was all natural and NOT from concentrate. It used to be very tart and bitter, but I discovered that because of the change in my taste buds, that it actually tasted sweet and full and I actually could feel it nourishing my body ! And, I discovered SOBE Lifewater which comes in a lot of flavors and has a variety of herbs and vitamins. I like yumberry and dragon berry and ginseng. This is a good value and good nutrition and tastes great. It works for me !
I also discovered that if I drank bottled water it would go down into my lungs on the 3rd sip ! But, I can drink a carbonated drink or one of the above drinks (grapefruit, SOBE) and they don't go down the "wrong pipe". Drinking the occasional Dr. Pepper or Coke or ginger ale, etc., tasted great and went down happy and smooth ! Screw you, Mayor Bloombird and your addled, megalomanical ideas on what people should be eating and drinking---your thought process is as twisted as Caligula's...
And, a Vitamin D supplement, I took on numerous advice(s), kept me from getting a cold or infection.
I also took a Vitamin E supplement in the form of Fish Oil.
I am on a regimen of pain killers and had to watch out for constipation. Louis Armstrong used to promote Swiss Kriss (I found this via my brother) and it works great ! I shared it with several deserving friends and they thanked me profusely...because it worked great for them as nothing else compared!
I experienced some apprehension as I readied myself for my last Chemo (I know, this segue is skewed). It is because of the waning of energy the days before a Chemo. 3 weeks from now, when I no longer have treatments and my energy begins to fade...well, what will happen? And, the joint pains and worries about finances and work and life, etc. Will they become magnified?
But, I faced the day and thanks to the new tie that my good friend, Susan F (nee E) made for me, I set out for the regimen. Thanks also to Donna for the ride to the treatment. And, thanks also to my dear wife for coming to take me home afterward.

The staff at the hospital, where I take my medicine, are excellent and are very professional and happy. I need to remind myself to do something special for them (along with finding the means to pay their bills !).
I, of course, slept through the treatment. It started at 8am, and although it usually lasts until 4pm, this time it was over by 230pm. I awoke at 1pm and the nurse was changing my med. Then I went back to sleep and re-awoke at 215pm and she said I was finished !
After I got out of bed and put on my shoes and gathered my belongings, I made sure the two nurses had clown noses and stickers and chocolate candy. Then I asked one of the nurses to hold my video camera and film me as I tested my motor skills. I tried to juggle some clown noses. As jugglers are well aware, lightweight objects don't juggle well. But, I tried anyway and met with no success. I did find, however, that I could bend down to pick up the noses without getting dizzy. Then I tried throwing my hat in the air in hopes that it would return to the top of my head. I am want to do that from time to time. It is a great crowd pleaser---no matter the outcome, because it is a ClownThing ! Reviewing the video, I see that it worked far better than I thought it would!
I have learned from these Chemo treatments that if you have good and varied support groups. If you have a good Spiritual foundation or maniacal philosophy (I have the Spiritual foundation, thankyou). And, if you have a dedicated and experienced and positive Medical Team. And, you maintain a positive and uplifting attitude. If you carry a Smile with you and share it Whole-heartedly. If you make sure to engage in moderate exercise: short 100 yard walks, Tai chi, stretches, yoga breathing-responses, etc.; and, the use of Eucalyptus Spearmint body lotion for joint pain and aromatherapy. And, if you begin to experience Chemo-brain (very real)--then, decide that the only priority is not remembering things but just going forward and seizing the day (carping the diem). If you decide that life is for living! Having a fatalistic attitude is counter-poductive! Dream your dreams and forget about your problems. Don't focus on "fighting" but rather, use this health set-back as a learning experience. Put on a smile-- learn all about yourself and others. Don't draw-up a bucket list. Every move you make from now on is a bucket list. As you wake every morning, know that everything you experience during the day is special and inspiring and educational and take advantage of that ! In other words, as you witness the Sun rise in the morning, don't say to yourself, "This could be my last..."  Instead, say to yourself, "That Sun-rising is really beautiful...I should go visit someone and tell them about it !"  Then, get moving. You never know what Life has in store for you unless you let it show it to you and then share it with others !

Life is Good...Life is an Adventure !

Here is how I left my last Chemo:

                      short video:                   The Off-duty Clown Returns !