The Right Word

Last year, when I was trying to discover a way to describe my peripheral neuropathy, I struggled for 9 months or more with terms such as "tingling", "numbness", "stabbing" and "burning". While I was outside one evening looking at the constellations in the sky, I noticed that my feet were getting cold--as well as my hands. It hit me then. The feeling you get when your feet begin to freeze because you have been standing in the snow too long. That is the exact condition that I felt in my feet with the neuropathy!! Your feet hurt and burn and tingle...yet, they are also numb!

So it is when trying to figure out what I could use to describe the extreme lack of energy that I have experienced with this new round of Chemo. "Tired" doesn't do justice. I felt an over-whelming tiredness during my First round of Chemo drugs: Carbo/Taxol. My joints hurt and I felt as if I had an unending case of the Flu. A really, really bad case of the Flu ! I was tired all of the time but it wasn't debilitating, wasn't keeping me from going for long walks or running errands or visiting friends. I was simply worn-out most of the time.

The Second Chemotherapy, Alimta, had a decidedly different story. I was tired all of the time. When I did too much physical activity, I reached the edge of collapse. I learned to pace myself. I began each day with case of fatigue. I would eat a boiled egg and drink a glass of grapefruit juice, take my folic acid and a B12 capsule (the nurse would also give me a whopping shot of B12 before each treatment) and a small little pill of Folic Acid. I would drink a cup of coffee and go out to greet the day. I am certain that the boiled egg gave me 4-5 hours of stamina. I learned fairly quickly through experience and, also, searching the Internet that increasing activity would run me over--run me down like a bad car battery. I asked my oncologist and he said that the Alimta worked by shutting down my metabolism whenever my cells began requesting nutrients. So, I was able to dodge collapse and deal with the energy highs and lows.

Along comes this Third Chemo...I had read where the Taxotere would cause Fatigue. Well, isn't that what the Alimta did? I figured that I could deal with that--but, No! This was different. I had already been able to start back to work (driving a shuttle/car a couple of days per week) and I asked my Dr. if I would be able to continue doing it. "Probably not," he said. "You will be very tired."
"I was tired with the Alimta," I begged.
"This is different. Your blood counts will change. They will have to be monitored closely," he explained. "You will be very tired."
A bit flippantly I shot back, "Well, I don't see how it could be worse than the Alimta!"

Wrong! This so, so much worse. In fact, I have spent whole days in bed. Sometimes I get up and have a boiled egg, grapefruit juice---the whole regimen, then shuffle to my laptop to check my email only to find that I can barely log in and open the first message. If I manage to open an email I am never able to respond to it. I turn off the computer (not even logging-out most times) and wade through the tiredness back to the living room where I plop down in my chair and turn on the TV. I change the channel 3 times with no luck finding any substance worth viewing, turn off the TV and go back to bed. Ad infinitum.

"Energy" is a term I was using often. Energy--where is it? Energy--how can I get some? Energy--I need it!! I didn't even have the energy to search for ways to increase mine. I couldn't go to the computer for help. I couldn't describe the dilemma either. I could only state that I was out of energy, but I knew that I wasn't! I had energy, motivation, goals, direction. What was I experiencing? It wasn't Tiredness (as in First Chemo). It wasn't Fatigue (as in Second Chemo). What the heck was it.

I consulted the Oracle: MyOncologist. He nodded his head...knowingly...with a slight smile...an understanding. "I see you are experiencing a lot of Weakness. It is the Chemotherapy. Most people cannot tolerate it for very long."

Eureka !  Weakness ! I was never so happy in my life so as to be thought of as a Weak Person! Hallelujah!  I am Weak. I am Weak! Hear me roar (well, not roar but I can mouth the word with a determined look of glee and fire). Weakness is exactly the word that described the condition my condition was in. I didn't feel tired or on the verge of collapse. I just couldn't do what I wanted to do, which was Anything!  So, problem solved yet no solution. My blood levels were still in the normal range but they were teetering to their upper and lower limits and there was nothing to do about it.

I had a Birthday Party to attend last Saturday and I fixed myself some liver and onions with yams on Friday. Liver has B12 and iron and yams usually enhance the redness of my hair--though I have lost my hair again this time around.

I made it to the party and twisted balloons for a time until I felt my legs turning to wood and my feet feeling like fire. I walked around the birthday-cake table, all the while the children were encircling me and following me while tugging at my coat and hollering, "Make me a Dog", "Giraffe", "Sword", "Flower"! I would make a balloon, joke with the child, ask their names, walk around the table, honk my clown horn and then make more balloons. I had a lot of fun.

When I got home, I re-heated some liver sans yams in the microwave and sat down for some TV. After awhile, I got up to put my plate in the sink and found that I could hardly walk. My wife asked if I was going to take off my clown make-up. "After awhile," I said, though I knowingly was thinking that I might leave it on all week because I was afraid I would be to weak to ever clown again and I wanted to have my make-up still on should a situation come up where I could run out and do some more clowning. I alternated watching TV and struggling out of my chair to grab some Jelly Beans for several hours before I finally gave in and removed the clown face.

My left leg was swollen and my feet were burning and I stayed up all nite wondering if I would be able to get back out of bed should I decided to go there. Well, I did and I did and last nite I took a short walk on the sidewalk out front. I walked about 20 yards and then gave up. But, when I got back inside, my lungs felt full and clear and the stiffness in my legs was leaving and my feet felt looser, more relaxed. I am making myself a promise to take increasingly walks every day. I told my wife she would have to walk with me so that I would be assured of making it back home. I am hoping that this will be a solution to easing myself through this round of Chemo. I know that I will be weaker and weaker. The walking should keep my muscles fluid and my lungs busy and clear, though. I am very optimistic that I can wade through this weakness until the Oncologist stops the treatment.

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

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 !