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 !!!!

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 !!!

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 !!!

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 !!!

Here I Go Again

I have begun a new treatment of a Cancer Preventive drug called Alimta. You can read more about it here:  ALIMTA

This drug will maintain the effect of my initial Chemo treatments and help to keep the cancer from re-appearing in another form. I believe in my soul that the Lord has healed me... and, I know from the previous medical treatments that my Doctors have been doing everything they can and that the PET scans and blood tests and CAT scans show that my Cancer has been checked and knocked out.
There is a possibility that the cancer can creep back into my body however, and I have chosen to continue with this new treatment in hopes that it will help others that are faced with this choice. If it works, of if it helps to extend my life and add some knowledge for future patients and future studies then it is a good thing. If I had chosen not to do this treatment and lived another 5 years...who knows...if I take this treatment and live another 5 years, they will be able to tell if it was the result of the treatment or if the treatment was negligible...and, that would be good knowledge for the drug company and for the future patient.
The infusion last only about 15 minutes, but they again filled me with premeds and gave me a B-12 shot. All of the premeds and the B-12 seemed to be to help with my energy levels...I wasn't given these with my other Chemo drugs and they really wore me out...so, this stuff must be powerful ! When I got home, I had been stuck about 3-4 places !  Anyway, no ill effects and I went for a walk afterwards and then ate an egg and drank some ginger ale. I grabbed some SOBE water(Hooray for SOBE, I need to write them), the only good stuff I can find, along with Grapefruit juice--NOT from concentrate-- that is all natural and does not ruin the experience with a lot of sugar or Sucralose...I can't believe they sneak that stuff into SunnyDlite orange juice, local home-made Mehaffies Apple Pies, Five-hour energy drink, Fuze, etc.
I know they must get a good price cut, but if their customers perceive (wrongfully or rightfully) that sucralose and aspartame cause medical problems and they lose a lot of good customers, then was it worth it...there are a lot of Dummies and Gamblers in the business world and they realize their idiotic mistakes much too late...think with your heart and head, not with you wallets and your crotch !
So, so far I am feeling pretty good. My last chemos kicked into high gear 3 days later and lasted a week or more with bad energy and roving pains...but manageable. I fully plan to kick back hard at this treatment...I am going to look for work and try to get off disability...it doesn't pay the bills and I don't want anything holding me back from enjoying life...even if I can work part-time, I should be able to afford extra ice-cream and balloons and what-not...
Anyway, the treatment today actually lasted from 8am to Noon because of the premeds and watching for reactions and getting blood results. the nurse was surprised that I was Stage IV Lung Cancer and looking and doing so well !  And, all of the nurses had to laugh when I read them that a side effect of Alimta might be that my hair would fall out....It was just starting to GROW-BACK !!!!
  Oh well...

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