June 4, 2019 -- Happy Rebirthday to Me

When we are young, everything seems bigger and better. I am always amazed at how easily young children are amused.  For those under 6 months, all you need to do is make a funny face or noise and they think you are the funniest person in the world. When we would take Justin to get his JC Penney’s monthly picture taken (he was the first, so this was a requirement, with Jason at number two, not so much) he would literally explode with laughter when they would shake a little stuffed animal off camera.

As we get a little older, we are still easily excited, but it typically takes more than a stuffed animal.  When Justin was four, we bought him a Mr. Microphone for Christmas. For those that don’t remember, this was a handheld microphone that would attach to a boom box or some other radio and act as a mic/amplifier combination. He opened it up and let out a rather loud “Wow!”, like he had just been given a million dollars. After 5 seconds he turned to me and asked, “What is this?”

It used to be easy to get excited, but as we age, it seems to get a little tougher. Dates during the year also seem to have a little less significance. When I was young, there were certain days that were just special.  There were days that stood out, even if they didn’t include presents, the last day of school, the Fourth of July and maybe even Thanksgiving because Grandma would make her special biscuits.  Of course, there were the big days that did include presents. Easter was good because of the Easter baskets, Halloween because of the mega candy bars that we used to receive, not the crappy miniatures that everyone gives out today.

The second biggest day of the entire kid year was Christmas and the excitement leading up to it. The world has changed, and we start thinking about Christmas the day after Labor Day as Hobby Lobby puts up all of their trees trying to get you to bite on the new gadgets.  In the old days, you would make a trip to the corner pop-up Christmas tree lot to get that perfect tree about a week before Christmas. Then a couple days to decorate it and you were in business.

Christmas was great because there was a nice buildup with the Christmas music and the Charlie Brown and Rudolph the Reindeer specials on TV.  However, despite all of that, there was still one day that was even more special, your birthday. It was a day you had to share with no one. It was your day.  My birthday has always been my day. January 16^th has always been special to me. 

Now I must admit that the level of excitement has waned over the years. When I was young, there was literally a countdown to the big day. It wasn’t like we did anything special on that day. Unlike today where there is so much pressure to have some monster party for your kids, I don’t even remember having a kid birthday party growing up.  It really wasn’t that important to me. I knew it was my day and all I needed was a cake and a few presents from my parents.

My birthday celebrations have not changed a great deal over the years, but certainly the level of importance has declined. Yes, I get a little excited deep inside when it is my birthday, but the cake and presents are not nearly as important. I am lucky enough to have both of my children close and the four of us will go out for dinner and that is enough for me.

However, my life changed a great deal just a couple weeks past my birthday 10 years ago. My trip to the doctor for my annual checkup started a chain of events that would change my life like no other event.

When you hear that you have incurable cancer, all the things that seemed so important are viewed completely different. We kid ourselves from the time we can actually reason that there is plenty of time to do whatever you need to do. There is still that chance to make the world a better place, to do that one thing that people will remember you for. When you hear those words, an imaginary clock starts ticking in your head and you begin to wonder how long it will continue with you feeling like yourself.

Within four months I had already received two different chemotherapies and radiation.  I had moved to a second oncologist at the Mayo Clinic and I was about to undergo a stem cell transplant. The hope was the transplant would restart my bone marrow and give me a few more years. On June 2^nd, 2009, I was given a significant amount of chemo to essentially rid my body of the cancer the best it could. On June 4^th, I was given my own stem cells back. The next week and a half was an adventure with my temperature spiking to 104 degrees and me literally forgetting two days even happened. All of those familiar chemo consequences happened, nausea, diarrhea, vomiting, lack of appetite and what hair I had left falling out. Needless to say, it was not the all-expense paid two-week vacation that everyone likes to talk about.

So you see, June 4th is my rebirthday. Despite the prognosis at the time and many ups and downs in the last 10 years I am celebrating my 10^th re-birthday (I might have actually coined that years ago. Feel free to use it if you like.  I also created the word elegation, but that is a whole ‘nuther story.)  There have been times in those 10 years I wasn’t sure things were going in the right direction as I am now on my 10^th different chemotherapy. Some have worked, most have not. In the end, they have all petered out at some point.

The medicine I am on now was kind of a last-ditch effort before another stem cell transplant. A second typically doesn’t last very long and doing one in your mid sixties is not nearly as much fun as one in your mid-fifties. However, a medicine that was designed for lymphoma and leukemia is working wonderfully for me. I have never been better. I have been using Venclexta (Ironically created by the company that split from Abbott Labs where I worked for 30 years.) for 14 months and have no sign of the cancer in my blood.  The longest anyone at the Mayo has successfully utilized this drug before it lost its effectiveness is 30 months.  I now have a goal. I love to be challenged.

I want to thank all of you that have put up with my writings for the last decade. Maybe I can get lucky and more drugs can become available and maybe even a cure one day. Then what will I have to write about?

January 23, 2019--Living on Borrowed Time

We all borrow things. It can be anything from a neighbor’s wheel barrow, your sister’s recipe or going to the bank for a mortgage.  Most of us couldn’t get along without being able to borrow something on a regular basis. Just about everything can be borrowed at some point in time. However, time is not one of those things.

We wake up every morning thinking that we have an almost endless amount of time available to us. That is unless we have an assignment due that day or the trash gets picked up at 6:30 in the morning and you can’t afford to miss that pick up another week. Time is usually our friend but there are times when it is not.

It was exactly 10 years ago today that I found out that I did not have an endless amount of time available to me. It was 10:30 in the morning when I got a call from my brand new doctor that unless I got to the closest emergency room as soon as possible, I might be looking at only a handful of hours to live.

It seems that my kidneys had pretty much stopped working and my bloodstream had become poisoned by a potentially lethal amount of potassium. I didn’t know it at the time, but if you flood your system with potassium, you can very quickly have a heart attack. Although my dad had heart issues, I never had given it a second thought about my heart and its ability to continue beating.

That all changed very quickly after I got to the hospital and they drew some blood and found that I had enough potassium in my body to power a fertilizer plant should a little chloride be added.  Very quickly I was hooked up to a heart monitor with about ten wires attached to my body.  They said a baked potato at lunch would have done me in.

It seems that my heart was hanging in there pretty well so I was able to escape the telemetry unit in a day but was required to stay over the weekend to have a kidney biopsy completed on the following Monday.  It was that night that I was told that I likely had Multiple Myeloma. Within minutes I was on my laptop and searching the internet for information about this disease I had never heard of.

It didn’t take long to realize that I likely had cancer and was at an advanced stage.  I knew my kidneys were bad but little did I know that I had dozens of soft spots on my bones from the advance of the disease. If unchecked I had very little time. Even with the methods that were available at the time the average life expectancy was 27 months.

At the time, I was desperate for a solution, so much that I was willing to make a deal with God. Sounds crazy but I just wasn’t ready to die. God and I had a conversation and I asked Him to give me ten years.  I would be willing to give up anything longer than that just to be able to last that long. It seems that he heard me and gave me my ten years.

Apparently, he is willing to give me even longer. After ten years of trying different chemotherapies, we have found something that is working. Certainly no guarantee that it will continue to work but I have been on Venetoclax since March with Amazing results.  After nine other chemotherapies that had mixed results and being told by my doctor that I was running out of options, things fell into place.

In the ten years of this journey filled with winding roads and hills and valleys, I have had my good days and my bad days.  Most everyone I know sees the happy, confident me. Trust me, there have been days of tears and self-doubt. I have faced a blood test virtually every month wondering if this would be the one that shows a rapid decline. Even after 10 months of great results, I still wonder every month if this will be the one that begins to go sideways.

Yet, so far, so good. I remain healthy and hoping for more.  It has all been through the grace of God, great doctors, amazing medicine and the friendship of many.  I have had prayers from so many people in so many countries and so many religions I can no longer count. 

My journey on borrowed time has been amazing and I want to thank you all for caring. Maybe God will forget our bargain and give me another ten.