So Where Have I Been Hiding? -- November 5, 2015

Over the last six years I have really enjoyed writing this blog and it seems like a few of you have actually enjoyed reading my thoughts. I find it a bit humorous that I have found some small success with my writing because I was never thought of as a great English student. I was always a math guy and English was something I had to take if I wanted to graduate to the next thing. About the only teacher that I ever had that thought I was a good English student was Sister Mary Immaculata who was my eighth grade teacher. For some reason she thought I was special, even having me sing in front of the class a few times.

The rest of my education included more English that I had to suffer through including reading The Odyssey and several Shakespeare creations where I couldn’t even understand the language. After graduating from college, I never wrote anything of significance until a soon-to-be friend of mine asked me to write an article or two for his new website, UDPride.com.  I had been a fan of the University of Dayton sports teams for a number of years and had penned a few thoughts on a listserv that was utilized for UD fans to share their thoughts with other fans.

Chris “Notre Dame Fan” Rieman had started UDPride.com and was writing every article himself along with doing everything else associated with being a webmaster.  He asked a few of us if we would like to put some words down and see if anyone cared. It generally doesn’t take me too long to throw out 1,000 words (which Julia, an internet expert, thinks is too long) so I thought why not? One thing led to another and I was soon writing more than one article a week including extensive interviews with players, coaches, administrators and even a Basketball Hall of Fame coach, Don Donoher.

I had more fun with those interviews than I could ever imagine. The Donoher interview was one that looked like it wouldn’t even come off but eventually he relented and said he could spend a little time with me. That “little time” turned into four hours in his living room where he took me through his life’s triumphs and tragedies including the death of his son. When I finished writing the article it totaled over 10,000 words and I was off and running.

When I got sick in 2009, I didn’t know what to do. I had cancer and the internet told me that I would likely be dead in 27 months.  I did my best to stay positive but it wasn’t easy coming from parents that had both died of cancer. I knew that I would eventually contract some type of cancer but I certainly didn’t feel it would happen like this and this soon. I was lucky enough to have a few friends at the time that seemed interested in my well being and Julia thought I could keep them informed by writing a blog.

Shortly after I was diagnosed, I started putting together my thoughts. Since I didn’t start it on day one, I had to go back and write the first two weeks at one time. I was very clinical and matter of fact. Julia read the first draft and basically said this was not me. This is not who I am and not how I write.  She made me go back and make it more like who I am. The goal was to be real and funny where I could be but still make it informative. Hopefully I have hit the mark in the hundred or so entries I have written.

I slowed down quite a bit last year only writing three blogs. The driving force behind that was I was doing so well, I didn’t have much to report and seemed to have lost the edge on what to write if I wasn’t writing about being sick. I wrote an article in November about Brittany Maynard and her choice to choose the time and means of her death.

Then I got sick again.

This time, I didn’t know what was wrong. I had been fighting something that the doctors could not solve. I had daily headaches, a low grade fever, low energy level and the feeling of having the flu. It started in early December and I thought I would kick it quickly, but it just kept hanging on and on. I went to my family physician and he prescribed a Z-Pack. I took that and nothing happened. Two weeks later, I made a return trip and he prescribed a steroid and different antibiotic. Ten days later, no change.

During this time I was popping both Tylenol and Excedrin like they were M&M’s. Understand that because of my damaged kidneys I shouldn’t be taking either of them. I would wake up with a headache, fight that all day and begin to see a fever late in the afternoon. Both of these forbidden medicines were getting me through but I knew I was rolling the dice with my kidneys.

The thing that was starting to dig at me was the headaches. Since I gave up iced tea and artificial sweeteners six years ago (two more things that were not good for my kidneys) I rarely had a headache and now I had multiple every day. After a while you start thinking the worst. Was there something growing in my brain? People that have transplants have a significantly greater chance of secondary cancers, including brain cancer.

I continued to stay positive but after weeks of no improvement, your brain starts to wander and occasionally the negative thoughts start to force their way in. Despite the lack of progress, I decided to try my doctor one more time. This time they started mentioning things like meningitis and Valley Fever. (Valley Fever, or Coccidioidomycosis, is caused by fungi only found in the soil in specific areas and can be stirred into the air by anything that disrupts the soil, such as farming, construction and wind. The fungi can then be breathed into the lungs and cause the disease to spread.) I thought they were grabbing at straws but what the heck, I can do another blood test and x-ray. The results of the x-ray was available later that day and it was negative for Valley Fever and I moved off that possibility. I had several of the symptoms but missed several too. I went to a company function during the weekend of my birthday and I had several suppliers tell me how bad I was looking. You know things are bad when people tell you how bad you look despite the fact it is your birthday.

A week later, I get a call from the doctor’s office and I did, indeed, have Valley Fever. I not only had it, I had a very significant case of it. I was put on a regimen of Fluconazole which fights the disease but has side effects that mimic Valley Fever. I was told I would be on the “cure” for six to twelve months. After several weeks, my blood work improved but I still felt miserable. I really had no choice but to continue with the routine. After five months on Fluconazole, it started damaging my kidneys. We experimented with going on and off the medicine and it became clear that it was the culprit. Luckily I was far enough along that I could stop the medicine. It was now July before I started feeling better.

Over the last couple of weeks I have had a return visit to all of my doctors, Infectious Disease, Multiple Myeloma and kidneys.  Thankfully everything is looking good.  The Valley Fever is not improving but it isn’t getting worse either.  As a result I will be able to stay off of any medication and hope that my body does a better job of eradicating the fungi than the side effects of the anti-fungals.  The MM is almost undetectable. One of the two readings was a little out of normal range but the ratio is excellent. My kidneys are back to their normal mediocrity but that is OK by me.

As a result of what was happening earlier this year, I had not been in a writing mood. Lucky (or unlucky) for you, I am back and have a few blogs in mind talking about my summer, just like elementary school. Hopefully my writing will be as good as Sister Immaculata envisioned.

Forty Years Is a Long Time -- September 13, 2015

It is funny the things you remember in life and the things that sit in the background. Some things are fuzzy and other things are crystal clear as if there is a photograph somewhere in your brain to remember what things looked like at the moment something happened. They don’t always seem to fit into what you think the priorities should be. 

It was forty years ago that I received the call from my Dad that I needed to come to Dayton from Columbus because my Mother was nearing the end. I know I received the call but I remember nothing about it. Yet, the scene in the hospital will be forever etched into my mind. After we arrived at Good Samaritan Hospital, we were met there by our neighbor and friend Dr. George Markus.  He spoke to us briefly and insisted that we not enter the room. It would be better if we didn’t see her this way before her death.  This moment is the photograph in my mind.  Sitting there in the waiting room waiting for the final notification.  After being at my Dad’s side in his last moments, I understand why it was suggested that we not be in the room, but in retrospect, I wish I had been more insistent that I wanted to be with her.

You may have noticed that I referred to my parents and Mother and Dad.  I was never to call her mom. That is what I called my grandmother, my Mother’s mother. In her mind, being called Mom would make her feel old.  She always looked older than she was because of her early gray hair, actually being asked several times if I were her grandchild. As a result, she was always “Mother.”

She did not have an easy life. She only attended 10 years of school because she needed to work.  She had more health issues than you could count. She always joked that she was the fifth child and was made with left over parts. In addition, she suffered a nervous breakdown and went to Florida for some time with my Aunt Edna to get her life back together. She went through times where she considered suicide.  Yet through it all she had a love for me that was never ending.

My parents were married for 18 ½ years when I was born. It was always “18 ½” as if the ½ made it more officially a long time.  They had tried for years to have children with my Mother having three operations in the 1940’s to help her conceive.  Finally in 1944, they gave up when the doctor told her she would never have children.  They had thought of adopting but my grandfather had forbidden them from adopting. Not sure about all of the details, but it was made clear that he would not accept the child as his grandchild. They were a couple that loved children, having a hand in helping raising my two cousins, Nancy and Jeannie when their parents divorced and my Aunt Ethel and the two girls moved in. They just would never have their own.

Then the miracle happened. My Mother was pregnant. It wasn’t that she had miscarriages in the past, she had never been pregnant. It was late spring 1952 and their world changed. He would soon be 40 and she would be 38. They were finally going to be parents. Six months into the pregnancy, my Mother started bleeding. She was immediately told to go to bed and stay there for the next three months. One thing my Mother was not, was someone that liked to stay inactive. She always had to be doing something. That had to be one of the most difficult times in her life.

There was always the hope that there would be additional children but that just was not to be.  In my Mother’s eyes, I was perfect and I was enough. Little Johnnie did no wrong. I actually was a pretty good kid, but in my Mother’s eyes I could have been a juvenile delinquent and she wouldn’t have believed it was my fault. Because I was this special gift, she was extremely conservative with everything about me. I have no memory of having a baby sitter that wasn’t a relative. I would stay at the neighbor’s house after school or with my parent’s partners in business but that was as close as it got.

I was going to receive a bicycle from my aunt and uncle when I was 12 but they were told to take it back.  We lived in a park like area with very little traffic but the thought was I was sure to die if I actually wondered out in the street. Finally, at Christmas when I was in the eighth grade I actually received that bicycle. Do you know how hard it is to learn how to ride a bike when you are 13? And it is a lot farther to drop when you are taller than four feet.

When I entered high school, my mother decided that they would sell their portion of the grocery store they shared ownership in.  Since she never felt comfortable driving, we only had one car and she was home every day when I came home and a snack was always ready.  For breakfast, I would have whatever I wanted.  Since she only slept about 2-3 hours every night, she was always awake when I got up.  When I started working in the summers, she would make me two hamburgers and French fries for breakfast.  (Please keep your spoiled only child brat comments to yourself.)

I have a standing comment that I have with people that meet my wife, Julia (not sure how that happened name wise), that everyone loves her. She can walk into a room of strangers and an hour later walk out with 10 new Facebook friends. That is the way my Mother was. Everyone loved her. She could not do enough for you. If you needed something, she would do it. If she could help in any way, she was first in line. My Julia is the same way. They say you marry your Mother, maybe I did.

It has been 40 years since I have heard her voice.  I miss her and who she was. I think I was a pretty good son, but I wish I could have been there with her more as she was fighting her losing battle against cancer.  I have a million questions for God when it is my time, but before I see Him, I want to see her and ask her how I did.