A Good Day

My sinuses flared up over the week end, so I did not have chemo yesterday. However, I felt much better today and had my third treatment. So far, I have not felt anything, my hair is still as it was, and my right side continues to work normally.

I have even been able to do some work around the house. Unfortunately, I have just created more work for myself. Plumbing SHOULD be easy! For me, it hardly ever is. I can start a job the SHOULD last only an hour and spend days at it.

But mostly, the day has been good.

1. I have had the opportunity to post to all my boards and have some significant impact on at least two of them.

2. Elizabeth and Earl arrived around 9pm. We had a wonderful time talking. It is so good to be back in the family.

3. I called Jenny to get her new address and we had a very good conversation. She is doing well. Emma is with her this week so they are having fun.

The Brain Is A Fascinating Organ

The brain is a fascinating organ. Parts of it control almost every part of our lives. For example, right hand dexterity. Let’s take a simple task: taking a drink of coffee from a mug. Since I am not an expert (yet), I may not know all that the names of all the parts of the brain… nor which part controls what. However, I have learned a little.

When the surgeon removed a 2in wide, 2in long, and 4in deep section from the top left side of my brain due to cancer, I could hardly raise I right arm. The section removed is called the "pre-motor strip."

Back to the cup of coffee…. As I began to re-train my brain, I noticed how many steps are involved in what, up till then, I assumed was a simple task. First, part of your brain has to decide that you want a drink. Maybe it received a signal from the part of the brain that interprets smells… which intern connects with your memory… childhood memories of smelling coffee roasting at the nearby coffee processing factory are mine. Or maybe it was a signal from our stomach says: “I’m empty”. There are hundreds of other signals and memories that might trigger your brain to say: “I want a drink of coffee.” That, my friends, is just Step 1!

You have decided to take a drink of coffee. That decision sets off a second string of events. The part of the brain that decided to take a drink must issue orders to the part of the brain that controls the muscles in your arm and hand. Guess what? Those orders do not go directly to the appropriate muscles control center. They are passed along by the pre-motor strip!!!! (Read above). And the order is not simply to “Pick up the cup.” It is very complex: What muscles do I need use? How do I hold the cup? (by the handle and by wrapping fingers around the mug?) How firmly do I need to hold it? How far do I need to extend my arm to get the cup? Where is my mouth? How much force do I need to apply to raise said cup to my mouth? This is only part of Step 2.

Now, damage or remove the pre-motor strip!

Your frontal lobe (with input from various other parts of the brain) makes the decisions and issues the orders to take a drink of coffee, but nothing happens. In frustration, you try to make it happen by thinking harder, but nothing happens. However, over the next few days, your brain relearns and you are able to do Step 2 at least semi correctly.

Ok, you have the cup in your hand. You are still learning how to get the coffee to your mouth without spilling it in your lap, but each day you are improving. You have even re-mastered the art of halting the cup a fraction of an inch from your month so that the area right above your upper lip and front of our nose can send a signal to your brain about the coffee’s temperature. Your brain issues new orders to proceed and you take a drink. You have successfully completed Step 3.

But wait. You are not finished yet. The cup is still in your mouth. Similar to Step 1, various parts of the brain are involved in the decision that you have had enough. And as in Step 2, the brain issues orders to lower the cup. All of these sub-steps form Step 4.

At about the time you get the cup down onto the hospital’s beside table, someone comes in: Maybe a friend, maybe a family member, or, if you are really lucky, maybe your doctor, :lol:. You talk for a while and forget that what used to be an order your brain issued to your hand without you hardly noticing it, did not get through: “Let go of the cup, dummy!!!” Letting gravity have its way, you allow your arm to drop onto the bed… cup still firmly in your hand but with hot coffee on your lap.  

Step 5: “Let go of the cup, dummy!!!”   :lol:

I Choose To Believe

This has been a wonderful day! It actually started last night. I stayed up until after 4am reading information about Christine Anderson.  I am so impressed! I understand her music, lyrics, and spirituality so much better now. I also caught up on my other forums. Leo has fixed the Cancer Forum. The night before, a group of individuals took over the Forum making it useless to us who need it. At the same time, I “discovered” (I already knew about it so it was more like re-discovery), KCRW out of Santa Monica College in California. It is a wonderful place to listen to new and less pop music… including a lot of music from Brazilian artists. When I got up at 11am, I felt like a new man! I felt so refreshed… the meaning of Life was rejuvenated. I certainly do not understand what happened.

This afternoon, I had my first significant IM conversation with A-J (an English Aimee fan) in several weeks. It was nice to talk to her.

The downer for today was hearing that Senator McCarthy died yesterday. His death, no, memories of his life, prompted me to write a significant entry for my “Politics as Usual” blog. It may just be a pip dream, but I feel like becoming involved in politics… specifically, starting a new party, the Liberal Democratic Party.

I have had my seizure medication or I might suspect that I am feeling the way I am because I did not take my meds and am therefore more alert. It is always possible that this is just one of my “manic” spells. Nevertheless, for now, I will choose to believe.

Therapy

Physical therapy is really helping me return to normal! I am doing more than what the therapist is instructing me to do. Because I am having so much trouble with dexterity, I am using this typing as therapy. I am a member of several forums. That keeps me busy most of the day and way into the night.

I have also purchased a children’s writing tablet and am re-learning how to write. Using a pencil is the most difficult and tiring thing I do! It drains me of so much energy.

I have become a music fan also. Aimee Mann has interested me since I first saw were on an episode of “The West Wing” this spring. She has a deep, probably mezzo, voice. Her music tends toward the rock classification, although she is classified as an alternative rock singer. Aimee has been around since the 80s although I do not remember her from back then. She writes her own songs and her lyrics are out of this world! She touches my soul! Aimee likes to look at the dark side of the human condition. Song like That’s How I Knew This Story Would Break My Heart do break my heart. Aimee’s songs have been very meaningful to me at this time in my life.

Just this week, I have discovered another awesome singer/songsmith: Christine Anderson. Christine is much younger than Aimee. Christine was a professional model until recently when something happened… I do not know what… that changed her life. I do not know how to classify her song… probably alternative rock also. She is an outstanding pianist. Her themes are deeply personal but less dark than Aimee’s. She also speaks more about God and spirituality. Christine is an extremely creative composer.

I am re-discovering my own spirituality through music!

I Am Fine

It has been awhile since I last posted a message and this will be short. Surgery went fine and I am recovering well. I will return to me regular posting as soon as I am able.

Thursdays - Daydreams

Thursdays are usually days of expectation. It is not the weekend, but it is close enough that final plans are usually in the works for the weekend. Tomorrow, I will be making my “last” preparations for my upcoming surgery. I have to make sure things around the house are in order so that Dad can take care of himself. I have to make sure bills are paid, letters are sent, money is deposited, cash is on hand, gasoline tanks are full…

Thursdays are so close to the weekend… but not yet there, so they are “dream days”… days I spend daydreaming about the weekend ahead. Dreaming about what I will do, how it will be, who will be with me.

I have been in a long “Thursday” spell in my life. I have spent too much time letting the fear and anticipation of the not knowing rule my life. Anticipating what is to come, sometimes I forget to enjoy the Now. Yes, sometimes it is fun, even helpful, to daydream about “the weekend.” However, when daydreams interfere with the Now, the weekend can be a nightmare.

Wednesday is "Hump Day"

Wednesday is “hump day”… half way between the first of the week and the weekend. My hump day came sometime right before I divorced C. I came to a peaceful conclusion that I needed to leave or go crazy. We had grown so far apart. I had become more liberal and C more conservative in the years of our marriage. I still love and admire C tremendously. However, I know now that we just had come to a point where our lives would be better if we were separated.

Shortly after my divorce, I married J. For 18 months, our life was wonderful. We had problems… significant problems. I did not live near my children and she did not live near her daughter. We did have fights, but we worked through most of them. Everything seemed to be heading to a beautiful weekend.

Tuesdays are productive days

Tuesdays are productive days. After getting awakened on Mondays, I find that I am usually very active and creative on Tuesday.

On THAT Tuesday, I had an appointment with a neurologist who promptly told me I could not go back to work. She also scheduled an appointment for me to go to a neurosurgeon for the following week. On that Tuesday, I took care of paperwork and finances. I wrote my Living Will. I went to work and filled out the sickness leave of absence forms. I was running on adrenaline. My mind was racing: What did I need to do prior to surgery? How was I going to pay for it all since I could not work?

It was also a day to notify people. I made two email lists: One of family members, the other of friends. I mailed a notice to each list telling them what was happening to me. I made sure my bills had been paid or at least where already scheduled automatically to me paid. I started a list of things I wanted my health care surrogate to know and to do.

Tuesday was a productive day.

I Hate Mondays

I hate Mondays! After a weekend off from work, I just don’t want to get up and go to work. Especially that Monday. I awoke having one of my spells. That in and of itself was unusual. However what as worse was that I did not have just one. I had multiple spells. They came in about 15 minute intervals. They were the same as always… loss of ability to speak. I took my morning medication but continued to have spells. At the time, dad was in a nursing home recovering from his own problems, so I was alone. Later in the day, with no end of spells, I took additional medication. At least I did not have any more spells while I was asleep. So I slept through the night. But the next morning, the spells continued. By then, I knew I had to go to the ER.

I hate Mondays!

A Day of Rest - Day Seven

While 2003-2005 were anything but restful, they were years I did not worry about my cancer. They were years of rest. I adjusted to the new course of my life and I rebuilt bridges to my kids.

As 2005 began, I gave in to the conclusion that I would live with my father for the rest of his or my life and care for him. I accepted the fact that even though I was overly qualified for my menial, hourly job, I would make this job work.

I was heavily in dept but I was paying it off. I could even see how it would be possible for me to increase the amount of my back child support and alimony I. By my projections, I January of 2006 I would be paying over the required amount and thus be paying some on what my children and ex wife are due.

This spring, I cleaned the flower beds around father’s home and planted new flowers. On one side, I planted Azaleas. On the back side, I planted roses and some bulbs. I still need to finish the front and the other side. I took over lawn care rather than paying someone to do that for us.

Within the house, I made an effort to find better way to use my small space. I like to cook, so I began to experiment with new dishes. Blackened Salmon and Blackened Chicken are my favorite dishes.

My father has done some stained glass window work in the past. Occasionally, I helped him. Since my decision to remain here, I have taken that form of art as mine. I am still a beginner. Although it is a source of great stress, I do enjoy it. I have already made one. It was an 8.5” by 11” chalice. I gave it to my pastor.

Man and Woman - Day Six

During all of these years, my wife was extremely supportive of me. I do not think I would have survived if it were not for her presence with me. And yet I was growing further and further apart from her. My beliefs and values were changing. I will not try to explain what happened. It would require me to violate her privacy. However, in 2001 our differences were too great for me to continue to live with her. Maybe in the middle of a midlife crisis, or maybe at the bottom of one of my depression cycles, I left her and filled for a divorce.

However, I reached out to another woman for help. From the beginning, she and I clicked. I believed we had the same dreams, the same world outlook, and the same values. We married in 2002, probably not the smartest thing I have ever done. However, for the first year we had an absolutely wonderful time together. We had problems but were able to work through most of them. However some problems were just too big. Again, out of respect for her privacy, I will not say much about those. However, so of the stress came from the fact that, in order to be with her, I had to move 400 miles away from my children. They never accepted her or my divorce from their mother. It was too fast for them. It was too soon for me. My career and that of my second wife took a nose dive. The financial strain resulted in the two of us moving to where I now live… I live with my father. She divorced me in 2004. We have gone our on ways to try to find our own paths through life.

All the Animals - Day Five

Those 11 years were not all bad. It was during that time that I became involved in Scouting. It began one day when my son brought home a flier from school inviting parents and boys to attend a recruiting meeting that evening. Although I was not a Boy Scout, I always wanted to be. I lived in a community that did not have scouting, but my father had a Boy Scout Handbook from when he was a child. I read it and memorized the Pledge, Motto, Slogan, and Laws. I went on hikes with my friends. I learned as much as I could about the natural world around me and how to survive in it. However, on that afternoon in early fall when my son brought me the flier, I was not sure I wanted to get involved. My son talked about going camping, shooting a bow and arrow, and hiking with so much excitement that I gave in to his request.

That night went well and my son joined Pack 18 as a Tiger Scout. Unfortunately, that is as far as it went. For several months all that we did was go to the monthly Pack meetings. Finally, I volunteered to lead the Tigers… and the Bobcats… and then Bear… and then Webelos… and somewhere in there I also became Pack Committee Chairman. I eventually became Packmaster. I did this in great part because I wanted my son to have a good, fun, and healthy experience in scouting. However, it was just as good an experience of me as it was for my son or for all the boys I influenced during those years.

Day and Night - Day Four

As my chemotherapy continued, I became sicker. My red blood cell count dropped below 2 M/uL. I felt very weak. I had several transfusions and took medication to try to increase my red blood cells. Who can tell whether or not it did any good? I assume my condition would have gotten worse without that help. But I remained weak. I could not walk very far without getting out of breath.

Of more concern was the drop in white blood cell count to bellow 1 M/uL. That made me vulnerable to infections. During those times, I could only do office work. Even then, I did get flu and bronchial type infections that lead me to be hospitalized twice.

After 13 months of chemo with MRI reports saying that there was no more detectable growth, my oncologist recommended discontinuing the chemo in light of the impact that it was having on my blood cells. In January of 1994, I left the hospital free of chemotherapy. I had an MRI every two months for the next year. Then every six months for two years. Finally, the number was dropped to only one MRI per year. This continued until 2003. Each time the result was the same… no visible growth.

When I was first diagnosed, only 1 person in 10 survived past 10 years. I had made it! I could now officially start telling people that I was CURED!

The Dry Land - Day Three

After diagnosis, I talked with a medical oncologist about chemotherapy and to a radiation oncologist about radiotherapy. Radiotherapy would likely have the same results as surgery… loss of ability to speak and loss of the use of my right arm. So after many conversations and a lot of reading in the hospital library, I made the decision to start only chemotherapy. If after a month or two, the chemo had not shown enough effect I re-visit my choices.

My chemotherapy involved three rather standard agents: CCNU, Procrit, and Vincristine. Since this combination is so toxic, I would take my chemo in six week cycles. On the first day of the cycle, I would take one dose of CCNU, get an injection of Vincristine, and start a 14 days of Procrit. After that, I would not take any medications until the end of the six week period. In other words, I would give my body four weeks to recover. I would then start my next cycle.

The first cycle was not bad. I remember experiencing nausea only during the first night. In fact, nausea was never a major problem. The most significant problem was the decrease in my red and white blood cell counts. I was fortunate to have an understanding employer who let me work my own schedule. That was a very dry period for me. I remember that when I turned 40… at the end of chemo… I told someone that I really did not mind being 40, what I minded was the feeling that I should really only be 39. I had lost a year.

Seperation of the Waters - Day Two

The “Second Day” was filled with trying to identify the growth in my brain and to gain control over my “spells.”

At first, all that the doctors could speculate was that I had a tumor or a cancer. The days that followed were filled with tests. My first MRI was quite an experience. I was told by friends who had MRI that what they did was just keep their eyes closed. That way they could pretend they were not in a shoulder-wide tube. I tried that technique, but it did not work. I felt as if I was in a tomb. I had to open my eyes. I was pleased to find that rather than a black tomb, I was in a heavenly white chamber. That helped. However, I still experienced some Closter phobia. The only thing that kept me in there was the knowledge that if I really wanted to, I could crawl out of there. For my 2nd MRI, I asked for some medication. My doctor gave me two pills to take. They helped a lot! For my 3rd MRI, I only took one of the pills. For my 4th and subsequent MRIs I have not taken anything.

The MRI result gave further assurance to the doctors that I had a cancer. Within a week, I had a biopsy with the result showing that I had an Astrocytoma Grade II. I had given the neurosurgeon authority to totally excise the tumor/cancer. However, when he actually saw the growth, he opted for only a biopsy. As he said to me later: “If I had removed enough margin to be sure I took out all of the cancer, you would not be able to speak and probably not be able to use your right arm.” He recommended chemotherapy with close MRI follow-up.

At the same time, my neurologist struggled to eliminate my “spells”. He never named what it was I was having. He did not call them seizures. But he medicated me as if they were seizures. I first started taking Dilantin. Even at the highest dosage recommended, Dilantin did not eliminate my “spells”. He finally added Phenobarbital and the combination of Dilantin and Phenobarbital worked. As long as I took my medication, I did not have any “spells”. However, when I did not take my medication, I would have a “spell” within 24 hours.

The Beginning - Day One

On November 7, 1992 in started having a very peculiar type of “seizures.” From one moment to the next, I could not speak. If I tried, all that would come out was a stammering “uuuuuh” sound. I also could not make my right arm do anything but go up and down. They only lasted anywhere from 15 to 45 seconds. I was soon diagnosed with a primary brain cancer called and Astrocytoma Grade II, one of several types of gliomas. This blog is the story of that experience and a continuing journal of my current struggles.