Winter Forecast

                                                                 24 November 2013

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

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

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

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

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

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

Life is good....Life is an Adventure !!!

Reflections

I have often wondered how the Lung Cancer will end my Life...I don't have a bad cough and I don't have trouble breathing. Most of my problems seem to emerge from the Chemo and Radiation treatments. Fatigue and pain.

The past few weeks I have been really, really tired and I have a lot of muscular pain. I have to eat constantly to maintain my weight. I take one or two naps each day and wake-up with a lot of soreness. It is as if I am sleeping on a concrete cot with another slab of concrete covering me. Soreness.

I have asked a few Doctors and nurses how a person dies with this disease and they just don't know. The standard reply is that "everybody is different"; however, the actual passing is not understood. I believe the body just gives out. From all of the treatment? Or, is it the cancer that is growing and spreading and the body just can't fight anymore and so gives out?

I do know that when I lie down at night (usually at 4 am), I can expect to wake up once or twice during the night because I am in pain or because I have had some acid reflux and find it hard to breathe because my esophagus is burning and I am coughing. I drink some water and then some tea and walk around for a bit. It wears me out. Then I go back to bed and when I awake again I am still tired and in pain. The pain medication helps a little bit, but I don't take it that much unless my feet are really hurting and I want to go for a walk. Of course, I take it in the evening and also when I go to bed.

I think that some night I will just lie down and not wake up. I used to think it would be a coughing fit or a sleep apnea...I don't think that anymore because those things always woke me up and I dealt with them. No, I think that some night I will fall asleep and my body will just say, "I can't go anymore."

I'm worried. I trust in the Lord. I have never prayed for a Healing. I have prayed for strength and patience and understanding. I have prayed for others. I have prayed that I will be well enough to return to work. I have prayed that I will have the strength to go Clowning!

I enjoy Life and the Lord always gives me the opportunity to Smile and the strength to endure. I am not afraid of death, though I don't look forward to it! But, I know that it is a fact of Life and if it wasn't the Cancer, it would be something else. I just don't think about it that much. Except for the last few days. Because I am starting to lose interest in things, in moments. I try to find things to be interested in...I look for new music, shows, people...nothing. I go out and go to the park and try to reflect on Nature...nothing. When this first started I went to the park a lot. I went visiting a lot. It was always an adventure. It was always a Joy. But, now, it seems to be a task. I need to eat and rest and gain some weight. I don't want to rest. But, then again, it is a chore to move.

I keep thinking that I will wake up some day and the tide will have turned. That I will have begun to gain weight and get my energy and my interest back. I keep waiting. Patiently.

I think I will try to take the next week off and just rest and go for an short walk each evening. I have so much to do....but, I just can't do it...

Well, I just had to put down these thoughts because I know that this Cancer journey is full of unknowns and people that blog about it are useful to those who have a desire to understand...to try to see how to cope...to try to get a handle on what might be coming next.

I know that when I first started Chemo in January of 2012, that I thought it was the biggest battle of my life and the hardest. I remember how miserable I felt and yet I was able to stick on my Red Clown Nose and go out and Laugh with the world and share smiles. I want to do that again...

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

Fantasy Football

So, I have been playing Fantasy Football...this week my benched players out-scored my starters...

Not Complaining

                                              Parade of Planes, New Carlisle October 2013

I learned a new word today: Catabolic. It is, apparently, what I am experiencing. When the actual muscle tissue in the body endures lengthened stretches of the catabolic state, it eats away at itself in an attempt to find a source of stored energy.

For the past few weeks I have been working with a thera-band and some grippers in an attempt to build back my arm, shoulder, hand and back muscles. When I looked in the mirror shortly after my radiation treatments, I was literally skin and bones. So, I began trying short and light exercises to try to build back my upper body strength and muscles. I also have been trying short (100-200 yard) walks. I think my peripheral neuropathy in my feet is slowly going away because I get screaming pain at the ends of my toes and the bottom and sides of my feet now and then. When I go for walks I am tired when I begin and tired when I end. But, not more tired. And, I am not out of breath. With the neuropathy, though, my toes are constantly clenching because I can't feel my feet bending normally. It is a balancing act. I walk like an intoxicated person! But, it gets smoother now and then so I think it is getting better.

The muscle thing, on the other hand is different. I noticed that, along with bouts of fatigue, that my muscles were constantly sore and achy. It never went away, even if I rested for a couple of days. I am up and down several times a night with the pain in my muscles and feet.

My appetite has fallen off a bit but I was eating an egg every morning and a meal at night along with some snacks. I noticed, however, that I wasn't able to eat as much and I had to force myself to eat.

So, today when I saw my Radiation Oncologist and Nutritionist, I expressed this to them. That is when they told me about the Catabolic state and they said I was wasting away. That I needed to eat, eat and eat and stop exercising. Short walks are fine, but limit the physical activity until I have gained enough weight to come out of the Catabolism. It will be hard.

Also, I got the results of my PET scan that I had on the 21st and I wanted to cry. The chemos and radiation hit their targets with good results, but the Cancer has fought back and re-appeared in my neck and both of my lungs. I'll talk to my main Oncologist about this next week. I am on Tarceva and it should be helping...

I trust in the Lord and am not ready to throw in the towel. This is just another chapter. I need to slow down and gain weight. I need to rest and limit my Clowning to just one or two things for the rest of the year. I need to win this battle (or die trying?)...we'll see what transpires...eat, eat and eat and rest and rest and walk and smile !

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

Normal May Not Be Normal

So, I started feeling more normal a couple of weeks ago. Trying to shake off the fatigue and dealing with the peripheral neuropathy. I am trying to take short walks. It is like learning to walk again. It will be awhile before the neuropathy goes away--so I am told. My weight is down to 142 lbs. Before I was diagnosed (December 2011) I was at 180 lbs. All during Chemo, I maintained a weight of 160. As soon as I started Radiation, the nutritionist said that I had to get more than 3000 calories per day. I had been eating for energy and avoiding fats and artificial stuff. Now I had to eat everything! I was able to maintain 150 during Radiation.
Okay. On August 16th I put on a performance at a local nursing home and, after I left, I had a slight mishap while attempting to carry all of my stuff (props, balloons, camera, action)...suffered a badly twisted ankle and learned that I had chronic Stupidity!
My ankle is starting to feel stronger but still hurts....and, along comes a really, really bad sore throat !
I am emerging from a life or death battle with Cancer and winning....and, starting to feel normal...and, now am experiencing Normal Maladies !!  What a Clown !!!

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

6 weeks of Rad

I just finished 6 weeks of Radiation treatments. I can't believe it has been so long since I have updated this blog...well, actually, I can. I used to spend evenings on the computer browsing the news and finding interesting new information on Mars Exploration; going on Facebook to see what was on everyone's minds; reading blogs from around the world. Lately I have neglected the computer altogether it seems. I didn't even miss it. Where did the time go? Where did my energy and motivation go?

                                               Careful and JoughJough sign out of Rads

Early into the treatments I told my Radiation Oncologist that I thought that I was finally getting over the extreme fatigue that I had experienced with all of the Chemos. I told him that I was just starting to obtain some normalcy. He advised me to enjoy it while I could because the Radiation was going to hit me like a sledge-hammer. That bad? Could be...but, he thought that I had such a positive attitude and that I was following all of the advice and methods to prevent side-effects, that maybe mine wouldn't be so bad. In truth, I didn't get a sore throat or much acid reflux. I didn't develop a cough--well, just a little, but not much. And, I didn't have trouble swallowing.

I did experience extreme weakness. At first I found out that when I had an overwhelming tiredness I could lie down for just 20 minutes and it would go away. I discovered that sitting for a time would really wear me out...how? I would try to go outside and walk for 10 minutes. I would go and visit somebody. But, the weakness was debilitating. I didn't want to lie down because it made me feel lazy and I had too much to do. I would log onto the computer and attempt to check my email but it would tire me out. I might read one message and then give up. It was depressing so I stopped even trying to use the computer on most days.

I was still interested in everything and curious about the outside world. But, it was too much energy trying to keep up.

I found myself going to bed earlier in the evening. I am a night owl so this was not like me. I would lie down at 9pm or 10pm....get up again, sometimes, at 3am and try to do something. Couldn't. So, I would lie back down.

Except for weekends, I was up every morning at 9am...my ride (thanks to all of the wonderful Church people that volunteered to take me to my treatments!) would pick me up at 11am and I would arrive at my treatment at 11:45. I was usually home by 1:15pm.  Most days I would go and visit Gary and Susan but I wouldn't stay for long. I would want to go to the park or the store or visit the nursing home, but I just couldn't find the energy.

Added to this lack of energy, the dietician said that I needed to gain weight and to pack on the calories by eating every two hours. I dropped about 9 pounds right off the bat and I knew when I looked in the mirror that I was a skeleton!

During Chemo I had been eating mainly for energy so, I ate a lot of protein and eschewed pasta and breads and anything that didn't taste right. Now, I had to eat everything in sight. I began snacking on peanut butter and jelly sandwiches, drinking Boost, eating Macaroni and cheese, potatatoes. Eating was also wearing me out. I gained 2 1/2 pounds one week and 2 ounces the next week. Through all of my Chemo I had maintained a constant weight. By the end of my Radiation treatments I had lost 5 lbs. Not bad...but it was a lot of work and it drained me.

They said that the weakness may continue for another month. I still have trouble with my feet from the Chemos. My nails are bothering me on my hands. I don't know where the Chemo side effects delineate from the Radiation ones. I have notes all over the house with "things to do" and it overwhelms me to look at them even. I am going to finish a few things and then I am going to throw out all of the notes and straighten out my room and start fresh.

I worry about depression but don't know how I could be depressed because I am an optimist and I love life...but, I worry about all that I have to get done and I worry that the cancer might return and hit me in the brain...I worry about where the cancer will pop-up next....I never worried about that before but I just don't feel right, somehow. And, I don't have the strength to distract myself.

I should be overjoyed that I have endured 16 months of straight Chemo and 6 weeks of Radiation. I should be thankful and happy that I have had the best Dr.'s and technicians and medical staff. I should be relieved to know that we have this Cancer on the run. I should thank the Good Lord above for holding me every night and walking with me every day...

Tomorrow is another day...I'll be able to do more....I'll feel better....

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

Tired of Fatigue

                                         Caricature by Russ Hogle aka Cartoona Matata


Now that I am finished with my Chemo it is possible that some of the side-effects will begin to subside. People have noticed recently that I am walking different--almost limping. That is because of the peripheral neuropathy. My feet hurt mainly on the soles. Wearing socks makes it feel like I am walking on glass. I have several pairs of shoes and vary them in an attempt to find the right ones for walking. It is different every day. Some shoes work sometimes and, at other times, they don't. Since it has been warming-up outside, I tried my sandals. They felt great! I may start wearing them although my toes look like my fingers in that they look like they have been smashed by a hammer. The nails are brown and bruised and they FEEL like they have been smashed. In fact, the only reason I take my painkiller is to be able to tolerate and to be able to walk. I usually wait until the pain becomes unbearable. Sometimes the interval between medication is 2-3 hours and sometimes I can go up to 7 hours.

I haven't lost any weight but my muscle mass is gone. Originally I approached all of this as an athlete would prepare for a game or event. I would go for long walks and I would exercise a lot by doing sit-ups and push ups and isometric exercises. But, since the Chemo would attack fast-growing cells or shut down my metabolism if I did too much, I had to severely limit my activity. I am currently trying basic yoga. I was at the Radiation Oncologist for a CT to determine where the radiation would be targeted and I had to hold my arms over my head. I noticed that my muscles were really tight. So, I believe that by doing some Yoga will help me to get my body more limber.

As to the Fatigue...well, that is another problem. The effects of the Radiation treatments will be some fatigue !  And, I have been extremely Fatigued, Tired, Worn-out, etc. for 16 months now ! I have had B-12 shots, I take folic acid and extra B-complex supplements, I eat liver and onions and spinach and kippers and boiled eggs and sardines. I take short rests/naps and try to take it easy. But, I usually end-up trying to do too much or forgetting to take a break. I try to fight through the Fatigue. Not a good strategy. The last few nights, when I am going to bed, I have been so worn-out that it seems that if I go to sleep that I will stop breathing. I lie down and listen to my mp3 player (podcasts and OTR). As soon as I began to relax my lungs and heart seem to interpret this as the time to shut off. I have to get back up and move around. I then go play with Tinkerbelle the Cat and drink some juice or SoBe and sit for a while. I am so conscious of this over-whelming fatigue that it has become an obsession with no solution.

I had a burst of energy yesterday afternoon for the first time in a long time. So, maybe the fatigue is beginning to go away...but, the Radiation may bring it back. I'll just have to see. It will be a bummer but I have come this far and I won't let it get me. I just need to remind myself to take breaks and lie down (which does help) and then try some yoga.

I will be having 30 treatments of radiation over 6 weeks. Starting Monday the 3rd of June.

Saturday there is a Parade in Troy and if I can get a ride I would like to participate...even if it is on the sidelines.

Last week I went to the Circus and had a swell time and am preparing a post to talk about it...

I may be stumbling...but, Life is Good, Life is an Adventure !!!!