GodWinks When I Needed - Day +11 & +12

Julia here again...

This post isn't intended to push my beliefs on anyone but if you just want to fast-forward to his status, feel free to scroll down.  I just wanted to let you know where my head was today. Faith is a very personal thing and has been a big part of this journey for us. I respect choice and have no agenda in my thoughts. 

Tuesday I felt pretty positive going through the day as John had seemed peaceful and the team seemed very upbeat which I'll give a little more detail below. As the evening went on, something in the air seemed more tense. No one said anything but sometimes you sense little things about a loved one. I had a call from a friend of his on the drive home and I even said as much. As the night continued, I have been trying to accomplish just one thing at the house to prepare for the move and make sure I have clean clothes for the next day. I cleaned out some half boxes and ingredients from the pantry that I didn't plan to move or use in the next 2 weeks. I then sunk into bed without even turning on the TV. One gift I have had since he was moved into ICU, there is someone with him at all times and I have full confidence in that care. I have really been trying to stay true to my prayer to not worry and put this in God and the Mayo's healing hands. John and I only have a partial medical education from all of our favorite medical shows and this situation is well above my doctor's paygrade. 

If you don't know, a GodWink is a term created by Squire Rushnell, author and television executive, in his best-seller When Got Winks He defines it as "An event or personal experience, often identified as coincidence, so astonishing that it could only have come from divine origin." 

My First GodWink of the Day 

After getting a morning update from the bedside nurse it confirmed my fears that things weren't as stable after I left Thursday night, I started spiraling in my own head. That's the worst thing and I tend to go there in the mornings. I was dreading the drive up feeling like it might be a tough day. I just laid in bed in silence for an hour trying to get the courage to start the day. I walked downstairs and noticed the beautiful bouquet from Mother's Day had popped an Easter Lily that I hadn't noticed the day before. Easter lilies are said to represent grace and purity. 

Merriam-Webster defines Grace as:

aunmerited divine assistance given to humans for their regeneration or sanctification

ba virtue coming from God

ca state of sanctification enjoyed through divine assistance

I got the message! Thank you!

GodWink #2 for the Morning

When I got in the car and started to pull out. The radio was on the same channel it has probably been on all week, KLOVE, but I hadn't paid any attention. As I drive back and forth each day, I usually catch up on calls or make mental lists. A talented young woman from our church worship team had recently released her first single. It quickly rose to the top of the Christian charts this month on iTunes and AmazonMusic. I heard Katy's voice and the words really hit me as I was pulling out of the neighborhood. 

In Jesus Name by Katy Nichole

I speak the name of Jesus over you
In your hurting, in your sorrow
I will ask my God to move
I speak the name 'cause it's all that I can do
In desperation, I'll seek Heaven
And pray this for you

I pray for your healing
That circumstances would change
I pray that the fear inside would flee in Jesus name
I pray that a breakthrough would happen today
I pray miracles over your life in Jesus name, in Jesus name

This is a beautiful song. If you want to hear this budding young artist, Katy Nicole, check out her hit. 

If John hadn't chosen "Well Done" by another favorite of ours, The Afters, for his stem cell blessing event the morning of the transplant, this one would have been ideal.

The Update

Day +11

So Day +11 was relatively calm and optimistic. He had Nurse Dena for the 3rd day in a row and she had such an amazing sense of calm. The doctor's rounds were all encouraging and we saw some slight improvements in the white cells and some inflammatory markers which is an indication that he is past the low point of the transplant and his immune system is rebuilding. Also it could be a sign that the plasma apheresis may be helping.

They were reducing the sedation with hopes that he would awaken and have some awareness but said not to worry if it didn't happen immediately.

Dr. Glass-Half-Full mentioned that if John continued to progress, maybe they could get him back to the transplant unit by the weekend but that we were in rather unchartered conditions so not to worry if he wasn't.

They gave him a 2nd plasma replacement treatment - we are so grateful to the 3.5 people who had to donate plasma in order to give him 7 more units today. 

At the end of the visiting hours though the energy in the air just didn't seem the same as I mentioned above.

Day +12

The morning call had prepared me that it wasn't going to be the same day as Tuesday. When I entered the room, it was more obvious. They were continuing to reduce sedation. He looked uncomfortable and even struggling with the vent tubes at times. He needed more frequent suctioning and the activity in the room was more intense. He was responding when I tickled his feel sometimes but no squeezing of hands or wiggling toes yet. 

During rounds the teams seemed more subdued when entering and even Dr. Half-Glass-Full wasn't conveying his normal confidence. The tone was more matter-of-fact. They were talking things like cytokine storm and engraftment syndrome. These are conditions that we have heard with other sorts of treatments or procedures but didn't expect from an auto SCT. They just keep reminding me that his situation is more uncommon and will require "more patience" and "adjustments day to day based on his response." The good thing is his white cells are continuing to multiply. The other good thing is they are able to manage his vitals and his discomfort by hanging a new bag or injecting more sedative into his IV.

He received 7 more units of plasma, a unit of platelets, Albumin, 2 units of Cryo (a new blood product we hadn't encoutered yet and I'm not sure I spelled it correctly) and more new meds to try to calm him and his system down.

The day felt more exhausting but I am grateful for the peaceful way the last hour has been and the GodWinks to remind me that I'm not in charge, I'm just along for the ride.

B Positive - Day +9 and +10

It is Julia again.  I'll get into John's status in a moment but I wanted to share something that is important to John and me. I called this post B Positive after a nurse a few weeks ago entered John's hospital room on a less that good day, looked at the units of blood she was about to hang for him and she said, "You're B Positive. Thanks to you, that is going to be my motto for today." Today I need this reminder as John continues to receive the gift of life.

Today's PSA

I have had so many people reach out during these tough weeks and ask "What can I do for you? Drop off a meal? Help pack (we are moving in about 2 weeks)? Help with repairs at the old or new house? Run errands?" We appreciate the generosity and caring so much and have taken several of you up on the offers. But this is a really tough thing to answer sometimes when your mind is reeling from the situation and you feel like you are just functioning from the hospital to the house and grateful that you have clean towels in the morning. John's diet has been so greatly restricted so it is hard for people to cook for his renal and nutrapenic meal plans and he has now spent almost 5 of the last 7 weeks in hospitals so I eat a lot of cafeteria food and protein shakes. My normal answer is please just pray for his healing and comfort (and I don't ask for prayers lightly. Faith has been a very important component of this 13 year journey.)

I finally have thought of something that most people can do no matter where they live that would mean more than any of you know. Give the gift of life that so many have given John over the last several months. 

Give blood. Give plasma. Register to be a stem cell match. Consider being an organ donor. Volunteer at a local blood drive.

Due to the agressive nature of John's disease state now, his body has struggled to make enough blood cells and platelets to keep him functioning. He has required several transfusions of blood products each week just to live with the hope that his system will be able to do its own thing after the reset of his stem cell transplant. He is getting 6 units of plasma and already had a few units of platelets just this morning. And they are still considering some whole blood later today depending on the next round of labs.

He also has just started on dialysis in the last month and sees so many people at the dialysis center awaiting the hope of a new kidney. Unfortunately when you are on chemo you won't qualify for a kidney transplant so the boys or I can't even give him one. If only more people would consider organ donation people who need these precious organs may have more hope.

Back to "Be Positive" - John's Status

Now what most of you clicked to find out. John has had a very difficult couple of days. As his fever has continued, his rough patch started Friday and we were very prepared for that. We knew to expect fever, nausea, diahrea, chills, lack of appetite, overall yuck! What we weren't prepared for is a change in his mental state. He started by struggling to find words, but still engaging with his care team, watching Ozark and Shark Tank, walking to the rest room, complaining about his Reds, and helping me with decisions of the house. He was answering the phone and texting. Saturday he was struggling more to speak but was aware when spoken to and he would try to answer and follow basic commands. His temps were more difficult to manage and went over 104 and frequentlly in the 103s. His blood pressure was also difficult to control. By evening he was very unaware and had periods of what they called "rigers" where he would shake uncontrollably. In the middle of the night they had called in the ICU Rapid Response team and Neurology several times each resulting in tests and speculation but few answers.

Sunday he was even further away from us and more of a concern. Finally as Jason was just coming up for a visit, John had a major change that resulted in what they thought was him seizing. The teams again descended on his transplant room and quickly whisked him off to the ICU. By the time we got down to the 2nd floor he was sedated to a state of calm and they had kicked his care into a whole new level of impressive. Now anyone who has been to the Mayo knows it is unlike anything you will ever experience. from the low patient ratios to the fridge in the room stocked with your own snacks (unless you are like John - no Doritos or Snickers), milk and homemade cookies delivered each afterrnoon to the most thorough, caring, first-in-class healthcare providers. I won't post photos because I don't know that John would want that, but he was in the command central of ICU with poles, monitors, and close to a dozen professionals all kicking it into gear to figure out what was going on. 

In ICU they have performed even more scans and tests and at least they are ruling out many of the worst things and they are keeping him comfortable and sedated. They have ruled out a stroke, brain tumor, menangitis, many types of infections, fungus, aneurysm, and blood clots. They don't have the answer yet but they are still hopeful that this is something that will reverse with time, assistance of what they call plasma apheresis (replacement) and a careful balance of therapies. He is on a ventilator for now and under the very careful eyes of an amazing care team.

One of the 6 or 7 doctors who have been in to speak with me today said he is a "glass half full" guy, but I prefer to say he took the "B Positive" pill today too. Since they haven't found the culprit of the fevers, unresponsiveness, tremoring and infection, he feels that means that the most difficult maladies to remedy are ruled out and a recovery is just delayed a bit. Now it is finding therapies to help them resolve this mystery which includes removing all of his plasma and giving him clean donor plasma, controlling his vitals, careful eyes and symptom management. They did this today and plan to again tomorrow while continuing to carefully control his system which is only 10 days old and just learning to heal itself.

The Handoff - Day +6 & +7 - 5/13/2022

It's Friday the 13th and it has definitely struck as unlucky for John. Today was the day he handed over the baton and put me in charge of updates until further notice.

We knew this day was coming when he felt less that normal Thursday.

Day +6 was certainly the roughest day since the transplant process started. He had started a fever at 4:00 a.m. and the team was on high alert to start precautions. He was having small fevers throughout the day which were controlled with Tylenol pretty well. He had very little appetite and he didn't even feel like getting up for his normal laps around the nurses' desk. He managed to avoid a transfusion today but was on the verge. He still had enough energy to have short conversations when the phone rang but you could tell he wasn't himself.  

His Day +6 nurse was Russ who said this was the time when they start really watching patients for infection and neutropenia and not to worry. His blood counts had already dropped to a level that warranted antibiotics and they were taking cultures to identify the origin of the fever. He was in great hands; he was at The Mayo.

Day +7 - if you believe in superstition, you know Friday the 13th is the day to expect bad things. I called his night nurse Ebonee at 6:00 a.m. to see how the night had gone. She told me it had been rough and his fever had stayed high through the night, but that is when people generally run higher temps. His hemoglobin and platelets were below the threshold of transfusion and he would get them when they took him across the hall for dialysis at 6:30 a.m..  

I had a busy work morning so I hadn't checked in after the morning call, and I knew he would be away from his room for at least 4 hours. I tried texting him a few times between meetings just to see how he was feeling and had no response.  Finally I had a break at noon and I called. Russ was back on duty and said it had been a really rough morning with his fever over 103 repeatedly. While at dialysis they had to call the Rapid Response team to check him out because his BP was in the 210s. His heart rate was in the 120s and he had uncontrollable shakes and wasn't responding. They weren't too worried that the BP or heartrate were anything more than the response to the temps so they started him with ice packs under his armpits, his chest and back of his neck, continued the Tylenol, ran a lot more tests and added another IV antibiotic. Now you all know what the pros do when you run a fever, ice packs. They also turned the A/C as low as it would go on full blower. When I went in around 3:00 p.m. it was like a meat locker. He was communicating but not much and couldn't remember anything from the morning. He didn't feel like eating anything all day but agreed to let me help him into the chair since he wasn't up for a walk. He told me to turn on the TV and proceeded to zone out. 

I called Russ in and again his fever, BP, and heartrate were all extremely high but nothing was culturing for infection so we got him back into bed and started the ice packs while he shivered. 

Yesterday we had talked about this and he said if he wasn't able to write an update in the next few days that I should let everyone know that this is to be expected. His body is in overdrive trying to recreate his bone marrow. That he is in the best place possible and he has an amazing team watching over him. Most importantly that if you call or text and he doesn't respond, he isn't intentionally ignoring you. He greatly appreciates all of the prayers and thoughts. This may continue for the next couple of days but when he is feeling more clear and able, he will respond. 

If you'd like to understand more about the Stem Cell Transplant and what it does to your body, check out this simplified explanation by the International Myeloma Foundation. 

Thank you, Julia

Waiting for the Phone to Ring (Or the mail to arrive)

 

For those of you that are old enough, receiving snail mail was one of the top moments of the day. You just never knew what was going to be the in the mailbox. More often than not it was mostly junk mail and bills. However, for me, 12-year-old John Churan, the Holy Grail would eventually make its way to the box and I was in heaven for days. Twelve-year-old John was a baseball playing wizard that loved everything about baseball. I collected baseball cards, I played rec baseball, I played pickup baseball whenever there was a chance.

But above all that, I read the Sporting News, the bible of baseball publications cover to cover. Every Thursday during the summer I would literally park myself in a chair behind the front window waiting for the mailman to drive up to our mailbox and drop off the mail. He was generally regular at about 2:20 PM but that sure didn’t stop me from going out at 1:30 and begin the countdown.  When he did get there I wouldn’t walk to the mailbox, it would be a full out sprint. This little newspaper gave me a weeks’ worth of knowledge that I would digest like a rat in NYC and a piece of pizza. Of course, like everything in life, even the Sporting News would disappoint and not have a very good article on my Reds and all that anticipation would come crashing down.

Today I had my little disappointment when it came to today’s running of my schedule.  I receive dialysis three days a week, Monday, Wednesday and Friday.  On Monday they basically took me from a sound sleep at 6:05AM and for the next 4ish hours cleaned my blood and removed 2 ½ liters of fluid. Most people believe that dialysis is just about cleaning the blood, but it has a secondary purpose in removing water as most dialysis patients no longer urinate. On Monday they pulled me into the dialysis unit at early and as a result, didn’t get a chance to get into my routine of taking a shower, put on clean clothes, brush my teeth, etc. As a result, I skipped the shower and felt cruddy all day.  So today I got up at 5:30 cleaned up and sat there waiting for my dialysis trip to get started just like waiting for my Sporting News. Instead, they hooked me up to an IV and gave me a unit of platelets as they were too low at my 4AM blood draw. It wasn’t until noon that I would finally get to my dialysis. I topped that off when I got back to the room with 10 laps around our pod of 10 rooms. I’ll order up some dinner and hope that the knife is sharp enough to cut the meet.

So overall it was a good day. Still feeling pretty good despite fighting diarrhea. We will see what tomorrow brings.

All Is Calm - Day +4 - 5/10/22

Day +3 went by without a whole lot happening. The excitement of the day was the 6:07AM wake up call to go to dialysis. When out of the hospital the trip to the Dialysis Center is no big deal. I’m there with 12 other people we lay there for 4 hours and go home. You have a schedule and can plan things. Not so much at the hospital. It’s their schedule and you must go with the flow. I think I have gotten close to a world record on pills. I ended up taking 31 pills yesterday, it’s like every day I am here they add more pills to the regimen.

Day +4 Today has been slow. This place is so quiet. It is in sharp contrast to when I was in a different hospital a couple weeks ago and we had patients screaming out “Help” among other things all during the day.

Because I know what’s coming in the next several days, I almost want it to get here and get it over with. Its like a tsunami is on the horizon and you have nowhere to go.  When I did this the first time the days in the middle were so bad, I struggled with just about everything. Julia even did a yeoman’s job of doing my blog for me. We’ll see what happens this time.

Mothers are the Best – 5/8/2022

I am going to warn you that this wasn’t an exciting day on the battle to kick cancer’s butt. That was expected at this point in the process. I will soon have days that will bring nausea, diarrhea, fever and just about everything else you’ve ever heard of cancer side effects. One of the biggest complaints about my hospital stay is how often you are awakened at night and then an early wake up call. Last night wasn’t that bad as there were only 3 disruptions where the previous night was 4. There is a 4 AM and a 4 PM drawing of blood. Luckily, I have a PIC line so I don’t have to get stuck. The rest are just the checking of temperature, blood pressure and oxygen in the blood, all simple but still awakening in the middle of the night.

My day today was pretty simple. I met with the nephrologist, and we decided not to have an extra dialysis. If you are on a MWF schedule you would skip Sunday which we agreed to do. Then in the meeting with the oncologist she decided to add another medication to help with the blood pressure. I am now up to about 25 pills daily. I finished off the day with a unit of blood and a unit of platelets. This is a little early for this but because I was so low when we started they had to accelerate the program.

That’s all I have about the transplant, but I couldn’t let Mother’s Day split away without a mention. Like many things in life, we don’t appreciate the best things in out life until they are gone and as I have aged I have come to the conclusion that my mother was easily the biggest influence in my life despite the fact that at times I felt more than a little over protected. It must have worked because I think I turned out alright.

I am sure you all have feelings about your mothers, good, bad, or indifferent. Just take a little time and remember the best of times and thank her for that because there were probably thousands of times they did things for you that you didn’t even know about and sacrifices you never knew about.

I wanted to write a piece on my mother today so I went back to the blog in 2015 when I wrote a blog on her. I am going to place it here again. Don’t feel like you need to read it, but if you have a few minutes please do.

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 as “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 of 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 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 to raise 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 be still. 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 babysitter that wasn’t a relative. I would stay at the neighbor’s house after school or with my parent’s business partners 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 Mother 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 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. Since she never felt comfortable driving, we only had one car and she was home every day when I came home with a snack waiting for me. 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 brat only-child 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.

Happy Mother’s Day!

Day 0 and the Can of Corn - 5/6/2022

Day 0 - Some of you may be wondering why the title of this blog is “It Just Takes an Hour.” When I first discovered that I was sick, all I could think about was what if I had found out I was sick just a few months earlier. I have always stressed the importance of annual physicals. When we moved to Arizona we were completely void of doctors. I started an immediate search for a good family doctor. The only problem was that everybody I asked basically said he or she are “OK.” That wasn’t good enough for me. Nothing is more important than your health and I wasn’t going for OK. So I went about a year without a physical. A year that might have cost me my life.

When I did get a good reference, it came from a guy that I casually met at a New Year’s party. I immediately made an appointment. Twenty-four days later I was in the hospital with kidney failure. I soon found out that I also had cancer. If I had just gone to the doctor earlier, I might have saved my kidneys and made my life easier the last 13 years. So, take that hour and get a physical, it may save your life.

Yesterday was my second Rebirthday. Not only was it a miracle that the extra cells collected from 13 years ago were viable, but also a miracle that I am able to go through the process again to reboot my bone marrow. I could almost say it was Déjà vu but I have already used that title. The day progressed much like thirteen years ago and there were no hiccups. May 6th is officially Day 0 (zero.) It was a good day. Angela, the physician’s assistant for much of my time at the Mayo made a special trip up to bring me a can of cream corn and a balloon celebrating my special day.

You are probably wondering why she left the can of corn. It seems that after you receive your stem cells, the preservative that is added to my own stem cells send out an odor that smells like cream-style corn. Most people pick up the scent but the person receiving the transplant does not. Weird.

Day 1 - has not progressed quite as well. I developed a slight fever which is expected but not this early. My blood pressure was also running a bit high. We will be watching both of those items for the rest of the day. The human body is a complex organism that is a wonder. I sure didn’t understand why my temperature was moving up. Well 3 hours later both blood pressure and the temperature came back to normal lavers. Just hard to explain.

Déjà vu All Over Again - May 3, 2022

Yogi Berra was one of the best baseball players to ever play the game which is proven by his induction into the Baseball Hall of Fame. However, he may be better known for his wonderful quotes. I am sure you have heard some of them in the past, but when you have the time, I suggest you take the time to read all of them. It will bring a smile to your face.

Here are just a few of my favorites: “You can observe a lot just by watching.”, “It ain't over 'til it's over.”, “When you come to a fork in the road take it”, “The future ain't what it used to be.”, and “Nobody comes here anymore, it’s too crowded”.

Yogi Berra Quotes (Author of The Yogi Book ) (goodreads.com)

The reason that I bring up the “Déjà vu all over again” is that I will be reliving a part of my life that many of you lived with me 13 years ago. Thirteen years ago, I discovered that I had Multiple Myeloma, a cancer of the blood plasma in the bone marrow. Over that period, I have done my best to wake up the next morning no matter the cost. Some days have been easier than others especially over the last two years which have become increasingly difficult. I have utilized 15 different chemotherapies during those years in a variety of different combinations. Some have worked, the majority have not. Sadly, there are none left that work on an ongoing basis.

That brings me to today the day before I enter the hospital for my second stem cell transplant. I am not operating under the illusion that there is some miracle waiting for me on the other side of this. It is more like the tv commercials where they say it is a chance to live longer.

So, over the last few months my life has changed drastically. Since Covid, Julia and I have been very careful where we went and what we did. When eating at restaurants we almost always ate outdoors, rarely inside. As a result, we have avoided that virus, however we did not avoid another virus that you may never have heard of, Rotavirus. It is a disease typically afflicting infants and young children. Julia and I both caught it and suffered roughly 10 days of the worst diarrhea we have ever experienced. This was so bad that I spent 3 weeks in the hospital and lost 10 pounds. It basically ruined what was left of my kidneys which were compromised by my MM. Now I will be on dialysis for the rest of my life.

My cancer has also taken off. For years I worried about my light chains which is a cell that normal people never worry about. For all of you out there your number would be 1 or 2. I have fought to keep mine under 20 for years. It is now over 1,400. As a result, we have had to move up the transplant before is does even more dirty work. It is also attacking my bones as I now have about a dozen with some type of lesion on then.

Because they decided to move up the transplant, I have had a zillion tests in the last week or so. The biggie was a bone marrow biopsy. I had that scheduled for earlier this week. This is one of those tests that they want you refrain from eating and drinking because you have the option to have it done under a “twilight” anesthesia. Well, I woke up that morning and my blood pressure was low. I didn’t know it at

the time, but my hemoglobin had also crashed. So, I drank some Gatorade ate seven (for the salt to raise my pressure) potato chips completely forgetting my afternoon biopsy.

A good friend and I always tease each other about being “stupider” and for sure I won this race. When we get to the hospital, I tell them of my egregious act and the world changes. As a result, I will either have to reschedule or go with just a local and the pain associated with it. Because we didn’t have a great deal of time to pull off all these tests, I braved it out and let them do it with just a local. Since I am typing this, I obviously survived. Yet to let you know the highlight of the procedure is an electrical drill and some type of instrument that they pound into the bone with. That put a cap on any dancing for later that day.

So, I am now through all the tests and just need to meet with my oncologist Dr. Bergsagel to finalize everything for tomorrow as I will receive my high-dose chemo to get this all started. As an interesting sidenote, Dr. Bergsagel’s father invented the chemo that will be used tomorrow.

I will be miserable at times during the next two weeks so bear with me as we can only hope for a miracle.

To Have Just One Day -- September 13, 2020

 When we are young, we tend to pick up some of the traits of our parents. Sometimes that is good, sometimes that is not so good. Justin and Jason have been smart enough not to follow in my footsteps and be a fan of the Cleveland Browns. Certainly, when I was young the Browns were good and even world champions in 1964. I learned to love them because of my father. I have been saddled with that for the rest of my life. The boys, on the other hand, have never seen success from the Browns in their lifetimes and as a result have rejected their father’s ideas and been able to avoid the heartbreak that the Browns manage to bring every season.

 I have never been an avid reader unlike my father, but I certainly did pick up his love of science fiction.  For my entire adult life, I moved boxes and boxes of my father’s old science fiction books around with me from house to house. Not sure why I did other than to keep a piece of him with me.  I finally donated those books to a retirement community a couple years ago, but what I didn’t give up was my love for science fiction that my father instilled in me.

 Although I still read some, I derive the majority of my sci-fi pleasure from either television or movies. Because of the current battle with Covid-19 and the need to stay at home, I started watching some of my old favorites. A good deal of what has been written by science fiction writers over the years is possible but there are some things that just are not likely to happen such as time travel. Despite that improbability, I have always found the concept intriguing.

 The ability to go back in time and change things for the better would be amazing. There was a series on television in the early 1990’s called “Quantum Leap.” I won’t even attempt to explain the science behind it, but in the end, the hero of the series, Sam Becket, would travel back in time to fix wrongs. Try to stay with me on this because it becomes a little out there. Sam basically takes over another person’s body with their physical attributes but with his own consciousness. He has a hologram side kick (Al) that helps explain the situations and possible outcomes. Once Sam solves the wrong, he moves on to another time, person and place. Sorry, had to get all of that in so you could understand how it all worked.

 Despite the premise, “Quantum Leap” was a very socially conscious show that very well could have been done today. It touched on issues such as hiring a Down Syndrome individual, racism and sexism. In one of the episodes, Sam is transported back to his younger self where he feels that it is his responsibility to save both his both his brother from dying in Vietnam and his father from a future heart attack.

 In the end, he could do neither.  As he talks to Al, he is extremely agitated as to why he can help other people, but he can’t help his own family. Al does his best to console Sam by reasoning with him, that he was given a special privilege in that he was able to spend time with loved ones that he had lost years ago.  Al told Sam that he would give up all of the success he had had in his own life just to spend one more day with a loved one that had been gone for years.

 Forty-five years ago today, I lost my mother.  What I would give to have another day with her. Just to hear her voice, to tell her all of the things that I should have told her when she was alive. After a while you forget some of the details, but you don’t forget who people really were.  My mother was way too protective but one thing I can tell you, she couldn’t have loved me anymore than she did.

In three weeks, it will be thirty years since I lost my father. I am lucky enough to be able to visit him occasionally because I had the opportunity to video record seven hours of him just talking about his life. This is one of my most prized possessions.

 Sadly, we often do not appreciate what we have when it is there every day. When we lose people, you do your best to remember them, but it is not always easy.  If there is one thing in life that I have learned, it is best to appreciate what you have and take advantage of the opportunity to enjoy those in your life because they may not be around forever.  What I would give for that one more day.

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.

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.