Failed quadruple bypass, 19 stents, 27 hospitalizations, and still swinging at the pitches!
Past writings titled The Tin Man’s Heart – unedited
It’s strange how a seemingly regular day on the calendar can suddenly turn into one never forgotten. July 23, 2011, is such a date for me. Only 50-years old and never saw it coming. It literally has changed my life forever. My chest was cut and stretched open and fate rested in the surgeons’ hands. The last thing I remembered was undergoing a heart catheterization procedure in the cardiac laboratory. Which involved the passing of a thin flexible tube into the left side of my heart, inserted first in the groin area. In general, the procedure is done to get information about the heart or its blood vessels or to provide treatment in certain types of heart conditions.
It was discovered I have severe multivessel coronary artery disease, predominantly in my left anterior descending circumflex, and right coronary artery. Because of this surgeons were consulted for emergency heart bypass grafting. The cardiologist left an intra aortic balloon inside my heart, allowing blood flow to it before the operation. My family waited patiently in the waiting room for news.
I remember being wheeled into another room and told not to worry, that’s it. I woke up seeing my wife, Bobbi, looking down at me. In the eighteen-year’s we’ve been together I’ve never witnessed seeing on her face the expression she had. We’ve been through a lot of different experiences together but nothing like this. She’s never seen me in a hospital bed before.
“How are you feeling?” she asked. Her hand rested on my arm and I could tell she’d been crying.
“I’m not sure. What happened?” I replied. Every thing was a blur.
“You just came out of heart surgery Mike. Dr. Riveron performed Bypass Surgery on you.”
“A vein was taken from your leg and connected to five different parts of your heart. You’re going to be okay.”
Bobbi knew the procedure well. Ironically, she helped in hundreds of them in the past. She was a surgical nurse in the same cardiac unit that performed the surgery. What a strange experience this must have been to her. She never expected, in a million years, that her own husband would someday be a patient. She knew everyone that helped save my life. Doctor Riveron was one of the best surgeons in the Midwest. She worked with him often. The hospital, Aspirus, was ranked in the top fifty in the nation for their cardiac care.
“How did it go?” I asked. I was in the ICU (intensive care unit) and my body felt like it wasn’t my own. I tried to move slowly but the pain quickly proved to be the boss. The room was dark except for the light coming in the door and the medical equipment hooked up to me flashed all sorts of colors. Wires, tubes, electronic devices stuck and glued on, and in me.
“It went well. Yours was a bypass graft times five. Usually Dr. Riveron does bypass times three or four.” she replied.
“Oh… what does that mean?”
“It means he did his best and felt more than three veins grafted to your heart would help.” She described.
I knew it was important to put on a brave front, even if unsure what the future would bring. I was determined to show everyone this challenge was nothing. The medication made me drowsy, but I felt I needed to immediately set the tone of things. Inside, well… I have to admit, I was scared. Which was a foreign feeling. Life held so many challenges, in my early years, resulting in my pushing that particular feeling down deep.
“I’m going to be okay babe. We’ll get through this.” I said to her.
With that, she smiled and squeezed my hand. Told her I loved her and again expressed that we’d get through it ok.
When she left that night, I questioned whether this was true. I felt like a bus hit me. My chest was stitched together with wires and the inside of my leg, where the vein was taken, was bruised purple and blue from the ankle to groin. I was able to stand and started to walk short distances around the unit, pulling an oxygen cart and IV’s along with me.
I had difficulty closing my eyes the first couple of nights, sometimes unsure if something would go wrong and I’d wake up. Thoughts and feelings went through my brain like never before. Could this lead to my death unexpectedly? I think the odds of this happening were higher had nothing been done Thousands in America went through the procedure and continued to live somewhat of a normal life. However, something just did not feel right. Didn’t know what it was but had a feeling that there was more to come. I thought how the surgery made things better and the time to have been worried is by not having anything done. It must have been a critical call by the doctors to rush me in ASAP.
The situation was out of my hands. I believe in God, though organized religion not so much, and said prayers asking that things would be okay. I felt bad for our three children and four grandchildren. We’re a close family and didn’t like having them worry about me. How do you tell them not to worry after such a serious operation? Thoughts of some thing going wrong and the thought of dying wouldn’t leave me. I tried to be brave and show everyone I wasn’t worried. The grandchildren believed me, our kids questioned it, and Bobbi knew far too much to be convinced. She knew things could turn south at anytime. Everything felt surreal, like it happening to someone else.
As the days past I grew stronger and was soon released to go home. Things ‘looked’ good I was told.
Today is July 28, 2011 and I’m home sweet home. Still absorbing everything that took place. Sure feels good being home, sleeping in our bed. Have talked with relatives and assured them things were all right. Still feel rough, get around slowly, sleeping a lot, and drinking the protein shakes Bobbi sends my way. Don’t have much of an appetite. Take pills in the morning, and in the evening. Leg is still purple and blue, about 24-inches by 10 in size. Chest has metal like bread ties bonding it together (under the skin), leaving about a 10-inch incision.
I feel grateful being alive. You can either feel sorry for yourself, or grateful for being a survivor. I’ve always believed in the later whenever facing a challenge. Bad and uncomfortable things take place in every person’s life. What they do with it helps shape and define their character. I look at little things as a challenge to do myself, without assistance. Worry of our financial future is difficult not to think about. Before this we struggled, like millions of people, and lived modest and simple. I’m a freelance photographer and made a lot of short documentaries, using citizen journalism, featuring the city we live in (Wausau, WI). It helped bring national and international attention our community. We use to have a small family business, a tattoo studio, which we sold in 2006. The recession that hit our country made the hustle to keep the doors open too much. The government said the collapse took place in 2009. But we felt the effects in 2006 and made the transition. I enjoyed teaching others the art but the whole experience became frustrating.
Not sure why I’m journaling this experience, hoping it’ll someday help another. It helps me put into focus, and organize, thoughts and feelings. Have used writing this way throughout my life.
Time to get some rest and spend time with Bobbi. She took off work for a bit and we just want to relax and watch movies on TV. Feeling pretty rough and my left elbow is throbbing for some reason.
Never made it to the first session of cardiac rehab. On July 30th an ambulance rushed me to the emergency room. I remember hearing sirens and the thoughts of me possibly dying returned. Was this leading to the end of my life? Everything was out of my control. The sirens were loud.
I was rushed back into the cardiac lab and another catheterization procedure discovered two of the veins grafted to my heart ‘occluded’, meaning closed. I also went into ventricular fibrillation, and had to be shocked to stabilize my heart. The next day off to surgery again for a GI bleed. The body has about ten ‘units’ of blood in it. I needed 5 to survive. Again, I put on a brave face and tried to assure everyone that I would be okay. I really started to question it. Would things really be OK? That was a lot of blood. No wonder my leg had such a large bruise on it. Bobbi’s the one who brought it to every ones attention saying I looked pale.
What was going on? Why did the grafts close? I was told that it was very unusual .Was I going to be all right this time? How do I position my thinking around all this information? Was this ordeal over with and I could resume my plans for rehab?
Bobbi visited each day, all day long, and stayed by my side. I tried to put a joking tone on the events but she knew, once again, the battle was far from over. How much trauma could a person’s heart endure? She knew, being a cardiac nurse, that it was an extremely unusual circumstance.
She knew all the nurses on the unit, having worked at the hospital over thirty years. She recognized them by first names and tried to put on a brave face as well. She explained to everyone that I dealt with Aspergers, which helped a lot. I didn’t like to be touched and feeling of being boxed into a corner, hate loud noises. For that I simply kept earplugs. When my senses become overwhelmed it scatters my thinking. It caused a lot of problems in my early years, lots of state institutions. But have received a lot of therapy through out the past couple years and have better awareness on the triggers. Everyone was very understanding and explained to me what was to take place beforehand. They understood the need for me to have my door closed and lights low. Bobbi helped the staff out as much as she could. Things like measuring outputs and walks in the halls. She brought to everyone’s attention that I was extremely pale and needed to be given blood.
Day five I was allowed return home again. The next day Bobbi and I went to cardiac rehab and set up appointments to return to the hospital three times a week. I met my ‘coach’ Tammi Smith, and talked an hour on what to expect. Arrangements to come in when it wasn’t so busy were made. They too were very understanding about meeting my needs in not being around a lot of people at one time.
Just when we thought we were out of the woods I returned to the emergency room with labored breathing and chest pain. The date was August 9th. Once again, it was back to the Catheterization Unit. A total of five mesh stents were inserted into various parts of my heart. Intervening in the LAD might be entertained later, as it did not appear that the left internal mammary artery was providing much flow.
I was stabilized and becoming very discouraged. Once, while people were surrounding my bed, it became a little too much. I became angry over everything and had a moment of rage and chased everyone away. I was fed up and tired of all of it; too much going on that I didn’t fully understand, constant noise and a flurry of activity. I knew it wasn’t their fault and people were doing the best they could. Yet, why so many problems?
Again, closing my eyes to sleep brought back concerns on whether I would wake up. These types of thoughts are difficult to describe. When Bobbi or family was around it forced me to remain positive and strong. But, it was getting harder and more difficult each time. Losing consciousness, on a cold metal table, was not how I wanted my life to end. I had struggled through too many situations in my life to have it end now. I had to recover from everything that was taking place.
The impact this had on my family was hard to comprehend. I think, more than my concern on pulling through for myself, was how they were being affected. The back and forth, each time with something new taking place, was leaving them in limbo too. How were they to position their thinking to everything taking place? This was the third hospitalization in six weeks. On August 10th I was cleared to go home and continue rehab.
I recall getting up early Saturday morning, on July 23, 2011, not knowing that this would be the day that would change my life, as I knew, it forever. Mike and I had just returned from vacation around Lake Michigan. We spent time visiting with my two sisters Lori and Chrissy. Although it was great seeing them, I remember flashbacks of seeing Mike struggling. It appeared as if he was getting short of breath with any amount of energy expended. It was extremely hot, although I was wet from the heat, sweat poured off him. I remember spending time in the car with him the air conditioning blasting cold air to cool him down. Should we go to the emergency room I thought? He insisted he was all right and I trusted him that this was the case. Now, looking back at things, it was far from the truth. When he took some suitcases upstairs, he returned short of breath with chest arm and jaw pain. I convinced him to get in the car and go to the hospital. He did not argue the point, and this is when I knew something was truly out of sorts. The month before he had an abnormal stress echo test, (before we left on our trip) and was scheduled to have an appointment with the cardiologist later the next month, so we weren’t overly concerned. I, being a cardiac surgical nurse, see appointments with cardiologists made all of the time. They would have told us if something were urgent. Right? Was this denial on our part? Mike was young and strong as a bull. The trip to the emergency room sent him straight to the Cath lab. I thought maybe he’d need a few stents and we‘d return home later the next day. I must have been way too optimistic and knew things were not going to be that simple when I saw Dr. Riveron running down the stairs towards me. He kept repeating he was sorry. Sorry about what I thought? I worked with Dr. Riveron for years, and knew things couldn’t be good. I remember sitting alone in the waiting room, after he left to do Mike’s surgery, and began to cry. This could not be happening to my family, I remember feeling scared and called my son Sean and close friend Diane. Both soon arrived. I also contacted our son Adam and daughter Shay. Phone calls nobody wants to make. How do you share news like this without it becoming emotional?
I remember Mike being wheeled out on a bed saying don’t worry babe, it’ll be all right. I’ve been in hundreds of Open Heart cases over the years, yet this time things were different. The five-hour surgery seemed to take forever. I knew what each page on my pager would be. First call was the start of surgery; second call starting grafts, third call grafts done. I was startled when Karla came into the ICU waiting room. What’s wrong I asked? She told me not to be alarmed (a coworker) and was just visiting to reassure me.
Mike’s surgery was completed at 7:30 P.M. I had to wait an hour before seeing him, which felt like an eternity. Dr. Riveron said he did bypass x5. That was quite a few in cardiac surgery I remember walking into the CICU unit where he had IVs Central lines and a breathing tube. His hands were restrained to the bed. I undid his wrist restraints, knowing if he awoke seeing this, it would’ve caused trouble, and stayed by his side. About an hour after he returned to his room the breathing tube came out and he woke up. What happened he asked? I reassured him that he was going to be okay, hoping this to be true. I stayed at the hospital until around midnight. We were both exhausted and I knew if I had stayed, he would not rest.
I got in the car and drove home by myself. My mind was a blur, what just took place? I had never dreamed that a profession worked in for years would be knocking on my own doorstep. We’ll get through this I thought, people have heart surgery everyday and go on to live long healthy lives.
I awoke early after a restless nights sleep, I wasn’t used to sleeping alone. I hated leaving him alone in the hospital. He has Aspergers and was not used to having strangers surrounding him. I knew this time would be difficult and I wanted to take care of him any way I could. The hospital surroundings were not strange to me, as I had spent half of my life working in them, but in 19-years I can only remember Mike visiting it once or twice when CC (granddaughter) was sick. Here he was in a strange place, with strange people pulling tugging and probing him every 30 minutes. It must have been his personal hell. We were in the hospital for four days and anxious to go home. I remember him having intense chest and arm pain, before we left. Was this normal? I had only experienced Bypass surgery from the operating room side so I really didn’t know. Everyone kept saying he was young so his surgical pain was more intense. Mike was not a complainer so I questioned this.
I recall walking into the bedroom on Sunday morning to him looking white as a ghost, he was sweaty, cool to the touch and having pain. What was taking place? I followed the ambulance and remember praying, no pleading to God that he wouldn’t die. The emergency room called Dr. Johnkoski, who was on call at the time. The tests they ran were negative but he wanted to keep him overnight for observation.
I left the hospital about 9:30 P.M. I felt confident he was doing well and told him that I’d return in the morning. He called me shortly after I got home to say goodnight. About an hour later, the phone rang once from the hospital, I picked it up and there was no one on the line. What prompted me to call his room I have no idea. When I called, a strange voice answered the phone, Dr. Jabour. Why was he suddenly in Mike’s room, answering the phone. Dr. Jabour said they were taking him immediately back to the Cath lab. I hung the phone up, put on clothes, and raced to the hospital. What on earth could be going on?
My concern overtook my sense of panic, and I remember running down the dark and empty halls, seeing nothing but white coats and a bed being wheeled out in the hall. Dr. Jabour explained to me that Mike’s enzymes were elevated. This wasn’t good. What was going on! I helped wheel the bed into the Cath lab entrance. I wanted to be strong for him, but deep down I knew this couldn’t be good.
I sat, once again, in the waiting room of the Heart Institute feeling helpless. His life, again, in jeopardy. How much pain can one person endure? Again, he told me not to worry, a strong man, putting on a brave face for me. Yet, I knew he was hurting inside and out.
I remember looking at the schedule board. The board read which room he was in, procedure start, and procedure end. What was taking place in there? Why after x5 bypass, was he returning to Cath lab? A million unanswered questions, all beginning and ending with why. While on the table, he went into v -fib and had to be shocked to be stabilized
Several of his grafts had closed. Why? The surgeon, Dr. Riveron, was one of the best in the field. The doctors can do their best, but the final say on outcomes, I believe, are from above. Blood tests were ordered but everything returned with unanswered results in why.
I tried to help the nurses out the best I could, without being in the way. Most I knew by name.
We had to get through this. I wasn’t ready to lose the man I loved. Some assume people with Aspergers feel little empathy for others. Maybe, in his youth, this was the case, but as he grew older, the opposite seemed to be the fact. What was important to him was hearing things in a soft voice. Had he not had enough hardships in his life before this? I didn’t understand how he could continue to remain as positive as he was. His concern for the people he loved was more important than the pain and experience he was going through.
It’s difficult to describe the emotions felt when I returned to work. Walking into the room where he had Bypass surgery seemed surreal. I have a new outlook with patients and what their futures hold. I had always tried my best to calm them, but now I knew. What did our future hold? I knew, no matter what, that I would be his rock and try to comfort him the best I could.
Each trip to the hospital reminded me of another experience, that to this day, brings tears to my eyes. When my father was ill, our family stood vigil until he passed away. Being a nurse, I was able to help in special ways. It was a difficult task but it was also a gift. He died with dignity and had a chance to say good-bye. I had to get pass these thoughts when hearing the hospital doors hiss open on these trips. I had to remain strong but shed tears when alone. Without the support from family and friends, I have no idea how I’d get through this. Was I now witnessing another love being lost? I pray not.
Back to the emergency room and the Catheterization Unit on September 12th. Two more mesh stents were positioned into my heart. I now had seven. When is this ever going to end? Tammi, my rehab instructor, stopped in to visit and was surprised so many incidents were taking place. I have very few friends, having a difficult time connecting with others, yet she quickly became one to our family. She was concerned and felt sad that I had to go through so much.
The things important in my life right now are numbers on a treadmill and figuring out how to afford all the new medications. I still believe attitude and positive thinking is critical to recovery.
November 1, 2011
Have now been home a month and doing as well as can be expected. I return to the hospital 3-times a week for the ‘rehab’. Now that some time has passed, with no serious and reoccurring complications, it’s a real adjustment getting back into the routine of things.
What I’m most thankful for is the opportunity to be able to do the simple things again. The first few rehab sessions I had no idea how I was going to get through. Like most challenges in life, each step is first a small one. On one machine, I thought I was doing well only to learn I wasn’t going fast enough to turn it on! Four minutes was tops and I had to quit. Now, it’s the first machine I jump on and don’t stop for 30 minutes. So there is progress. The therapist’s, in the program, are super encouraging and I look forward to their cheerfulness each session.
Anyone dealing with a health challenge needs to know that the smallest effort will at first seem impossible but perseverance soon turns into accomplishments. Before this situation, I could rarely sit still longer than 5-minutes. At first, it took me five minutes to walk across a room. It’s changed my perception on just about everything. I look at life a little different.
I had two choices, to sit back and get caught up in things being ‘too hard’ or make small challenges into bigger ones. I also had to learn what balance meant. Things have always been full speed ahead and I knew no other way. When it came to cardiac rehab, it did not work that way. It’s more about conditioning and good steady work. It was hard to understand that at first. I thought the harder I pushed the sooner things would be back to normal.
I think when we push ourselves, instead of being happy with where we are at, things get complicated. I was living too far into the future before. Always having something planned and never really being content with the day that was in front of me. We put so many expectations on ourselves to work hard to get ahead, that we seem to get caught up in things that we have no real control over.
A new diet has improved things. Lots of salad, fish, and lean meats. Learning to eat at regular times, instead of just a meal at night, was difficult to adjust to. Medications need to constantly be monitored and adjusted. I have to improve on eating on a more regular basis. Use to eat once a day and be done with it. After an experience like this, it’s hard not to think about mortality and the life we live. We all know that an end will come; some see it coming and others have no clue that the morning they wake-up to will be their last. How does a person feel when the ‘other side’ is a possibility? Did they live the life they wanted? Did they give back to the world more than they took? Did they make a difference in anyone’s life?
I asked these things of myself. Did I have regrets? Sure, plenty. I could have been a kinder person to some. In my youth, I cared only about survival. Life didn’t start out easy. I was born in Beloit, Wisconsin in 1960. I don’t remember much of the town, though it haunted me for half my life. It was about 90 miles from Milwaukee and Chicago. In fact, the state-line went right through the town. My parents divorced when I was three and somehow or another the family unit was minus a mother. Not sure what took place being so young of course.
I could write that my childhood was great, went to the prom, graduated, and then married. That would be a lie though. Truth told it was a total nightmare. Dad soon remarried and the family grew. The only day it felt great to be alive was on Christmas Day. My Dad was a very active alcoholic and things were far from normal… whatever normal is. That was a day where my siblings and I were in a safe zone. There would be no yelling, degrading, punching, or throwing any of us around. That was the way life was. Didn’t know any better and assumed every house in the neighborhood was the same way. I have two older sisters, Charlee and Bonnie (who died at 40 some) and an older brother Wayne. My father remarried a woman named Rhonda that brought a stepbrother my age, Tim, and later a half brother Joel. In today’s standards a large family.
When I think back to the earliest pieces of the puzzle (one that took years putting together). At 9-years-old, 1969, social services in Beloit, requested an “evaluation” be done on me at a state mental institution in Madison, Wisconsin. Mendota everyone called it. Why? What was going on I remember thinking. Apparently I was disruptive in a few different elementary schools, which lead to getting kicked out for good. Fighting on the playground, not going with the flow in classrooms. A teacher later told me I once jumped on the cafeteria table and kicked away meals.
Why? What was going on inside me? My thinking made sense to me, I felt like I short-circuited at times. The move to the state hospital I’ll never forget. Locked behind huge unit doors and long hallways. The sounds were like none I ever heard. Some of the kids were lost in their own worlds. Some threw their arms about, one smashing his helmeted head against the wall. Staff dressed in white and simply gave orders to do this or that. I remember once being tackled to the hard tile floor and being restrained while and seeing a hyper dermic needle in some ones hand. Into my rump it went and the next thing I knew I was waking up in my room. A room made of stone, with tall ceilings free of furniture.
I didn’t plan on writing about all this, wanting to stick to the cardio. But at the same time wanted to bring to light that some people are just different. We are all hardwired in someway. How we perceive and respond to certain things. We’re all different. Some socialize well and others have a difficult time with it. I learned years later, which I looked only as another label, of having high-functioning Aspergers Syndrome. As I grew older and my life more stable I was able to travel back and see why that was indeed my challenge. Seventeen years of institutions followed that one trip to Mendota.
Things mellowed out when I settled down the best way I knew how and Bobbi’s been by my side throughout it. She helps me sort through a lot of things. She’s my ‘communicator’ in a way. I She’s the first person I ever trusted, beside a social worker who’ve I’ve stayed friends with now going on 40 years. He knew the worst of the worse; she knew the best of the best. Each had a tough job!
I drove motorcycles way too fast, and pushed the envelope with everything. I drank to much and stayed out to late. It made sense to me, but not to society. I learned through the school of hard knocks not to fight the lawman. As a grew into adulthood I had real issues to decide. Was I going to allow others to make all the decisions in my life or was I going to get with the program and accept the way things were and be done with all the foolishness? I had two children depending on me, before I met Bobbi, and their lives depended on it. Today life is the most simplest its ever been. Been sober 15 years. I drank because it helped me deal with life better. The problem was that one was not enough and soon knew no stop. I owe a lot to my family, counselors and many professionals. They helped me make sense of the insensible. I had to learn what my triggers were and what caused disruption. A lot of people with mental health challenges turn to booze and drugs. It’s relief and an escape from reality. Once you cross the centerline there is no going back.
I’ve been glad that when these heart issues hit that I’d taken time to learn and feel the good things life has in it. The love of a good woman made me a better person. It’s true that love can change anything. I’m glad that I’ve gone back into my past and try to make right the wrongs. Mentoring with high-risked teens did both of us good. I asked for the most difficult. I appreciated the time spent helping others help themselves. I knew what hard times were and wanted to help another not see them. Seeing a kid, I once helped, graduate, and make better decisions made it worth the time. To see another human being beat the odds, no matter at what, is exciting. We all make mistakes but the important thing in life, is we get back up, dust off our pants, and get on with life.
It’s not like the experience has me looking at life as bluebirds and happiness, it’s nothing like that. It’s more of an awareness of different things. I knew I pushed the limit when it came to taking better care of my health. We just never think the statistics include us. I thought I was in good shape and ate right, but in reality I wasn’t and didn’t. We are good at rationalizing things and consuming what we want and not always what we need. That is to be human but it does come with a price. No matter how many times we hear something is bad for us we don’t really know until that moment of truth is upon us. When we have to fight with all our will to simply get back to where we once were, what our normal was.
This experience is also a blessing in many ways. It did me good to have little control I needed my lens on life focused a little more. Some things don’t seem as important or pressing as they once did. That’s been a gift in a lot of different ways.
People have asked me what going into ventricular fibrillation (losing consciousness), and needing to be shocked back into the world, felt like. At first, I didn’t know how to respond without tearing up and becoming clearly moved. It is a memory I’ll never forget. I don’t remember the fade-away, or the loss of consciousness. It was not like I knew things were flat lining.
What I do remember is being disturbed from where I wanted to be, I heard my name, in different ways and sounds, bringing me back to reality. Where I wanted to stay was where my thoughts or spirit ventured to. Our grandson, Aiden, who is just 5-years-old, and I were sitting under this amazing, huge Oak tree. He was watching me whittle an old stick. The leaves on the tree were changing the most beautiful colors I’ve ever seen. Colors blended together more brilliant than a color wheel. I remember hearing voices shouting my name, in broken pieces, and Aiden telling me not to worry, that we would finish the stick later. When I woke-up, and saw the huge light over my head, reality of what just happened was explained to me in a fog. Bobbi explained it later in ICU. It also explained the 3-inch square pads stuck to each side of me. I thought at first people were arguing around me, but in fact, they were loudly saying my name, bringing me back.
Did I visit ‘the other side’ or was it my brain blue screening. I’ll never know. It was a strange experience because Aiden and I are connected at the hip .He marches to his own drum and we seem to connect in some way because of it. When he was a baby, crying like there was no end, I’d pick him up and he’d slowly calm down.
The experience was comforting. If dying is as peaceful as the place I visited then it’s not to be feared. Maybe it was just a waiting room to the unknown. What makes life great is the freedom to believe what we wish to believe.
None of us have a clue what tomorrow will hold, or for that matter even the next 5-minutes. It really gets down to what we do with the moment. I feel more connected with family and the few real friends we break bread with (share meals).
November 29, 2011
Have you ever had news told to you accidentally, with the person then realizing they weren’t suppose to be the messenger? Phone call from the hospital wanted to have verification of information for a heart procedure on Friday. Nobody had mentioned anything to me about it. Bobbi was planning on telling me when she came home from work. The hospital wanted to get the paperwork completed sooner. The lady who called realized I hadn’t been told yet and didn’t know how to respond. It was uncomfortable for both of us. Flashbacks returned to a summer not so long ago. The doctor’s wanted me to under go another procedure. That’s the last place I wanted to return to.
I still didn’t have a ‘main’ cardiologist, because everything had been a result of emergency room visits. A lot of good doctors and practitioners are involved from Aspirus Cardio Vascular Association. I seemed to communicate best with cardiologist Dr. Murdock. He explained to me what had taken place after another catheterization procedure. Things were more complicated than I had believed. I thought there was a problem in one area, but in fact stenosis was found in three of the bypassed arteries.
Three more stents were placed and two separate angioplasties were performed. Angioplasty is where a small balloon like device is used to expand the artery, stretching it. Dr. Murdock also discovered there was stenosis taking place.
I felt a lot better. For the first time in awhile I saw my feet turn pink when standing. The pain, which never really dissipated after surgery, had subsided. It was a relief. Everyday my pain was controlled with small nitro pills and patches.
I’m now home and getting ready to go outside and deal with a cold snowstorm that dumped about 6 inches of snow. Dressing in three layers and go-slow. Bobbi’s concerned about it but I explained that I needed to do these things. It, like any other chore it needed to get dealt with. No matter how I fee I’m not going to sit back and watch my wife tackle everything. I used to dread the cold Wisconsin winters but this year I will see it in a new and different light. Family and friends will mean more. None of us have a clue what tomorrow will hold, not even the next 5-minutes. It really gets down to what we do with the moment. I’m positioning my thinking into enjoying this holiday season and moving forward. Each procedure seems to knock the wind out of me a little more. The stenting is considered a non-invasive surgical procedure, compared to open-heart surgery, but it does knock you down a notch or two. Just have to keep on keeping on. Looking at life, since this has all taken place is different. The simple things have always caught my eye, but now they have been magnified.
Three times a week, without fail, cardiac rehab continues. The first part is getting hooked up to heart monitor wires. A sitting blood pressure is taken and then 5-minutes of warm up exercise on a treadmill. Speed is then increased for the next 30-minutes. A five-minute cool down and then weights. Everything is monitored and goes by numbers. At first, I strived to achieve 60-minutes instead of forty.
There are days when it feels like my chest is on fire. If I don’t match the numbers from the past session I feel defeated and discouraged. In the last couple of weeks, the going has been toughest. Sometimes, after only a few minutes, I have to stop and take medicine. I refuse to let a machine beat me and get back on. Discouragement is human but to quit, give up, is not an option. Exercise is the medicine needed for collateral flow. Collateral flow means life. Finding the right balance has been the difficult part. Someday the numbers are good, others not so good. The heart isn’t connected to what or how we want it to work, it’s a force of its own.
Wanted this journal to feature a quick recovery and a fast rebound back into life. I’ve lost track of the number of trips to the hospital and procedures. We are hoping for the best but know life changes fast and often. You just have to keep pushing ahead and trust the medical professionals. Have learned so much these last few months. Keeping your mind open is a plus. Daughter-in-law Jennie studies and practices holistic health and surprisingly it helped in keeping stress low and improved attitude. If a person believes something will help then go for it. What did I have to lose in trying it in conjunction with conventional medicine? Have tried meditation with good results.
Throughout all of it, Bobbi and I haven’t lost our sense of humor or belief that things are going to be okay. All of us have personal battles to fight and overcome. There are days when you want to quit, and simply give up. You have to realize that those moments will pass. We laugh a lot and try to find the silver lining in everything.
This year Santa brought me gifts early, mainly the gift of life. I feel like we’ve finally have turned the corner on things. You have to believe and have faith. The year 2011 turned life upside-down for a while. The New Year will be the opposite.
Watching Mike go through this experience, and reading his writing about it, has me reflect on so much. We’ve been through a lot these last 18-years. This battle has become one against two. We are going to tackle whatever the future brings as we have everything else, as a team.
It’s been a tough ride. There are good days and bad. Mike makes it clear, that none will beat us. I’d like to think we’ve turned a corner… but I know too much of the things that can go wrong. Each day is a gift. The holidays are soon upon us and a cold winter is knocking at our door. I’ve woken in the middle of night in panic. Sleep only knows four to five hours each day. Sometimes I wake-up and immediately know he’s not in bed. Where is he? Is he using the bathroom? Why hasn’t he returned yet? I don’t hear anything?
There’s been a few times where I’ve gotten up to see him sitting alone in the living room. No television on, just sitting in the dark thinking. I inquire if he’s all right and he assures me he is. He’d be deep in thought, not really looking anywhere. What was he thinking? Before all this, he had a premonition that he’d pass away within 5-years. I hoped not but knew that could be the case. He didn’t want to, but just had a feeling something would take place. He lived a hard life, and his body carried the scars. I knew he could beat this, he was given a second chance. First surgery, then stents, even V-fib in the cath lab. He took his second chance at life serious. We focused on one thing at a time. A small walk down a hall became a longer one the next time. He always said he had to go further than the last walk taken.
I worried about rehabilitation at the hospital. It would either go well, or end, in disaster. I could see him saying he could do everything himself, without needing anybody’s help. I knew this not to be true. Before this he ate once a day and kept moving a mile a minute. When he put his mind to something it was best to just stay out of the way and watch things happen. He’s beaten the odds many times in life. I’ve watched him open a small successful family business like some would start a fire with two sticks. What impressed me was his never forgetting where he’d been and always trying to help other’s believe anything was possible. In his early years, he poured it on and burned it out. He’s never had a drink during our entire marriage. Before that, he knew no fear and tempted life. Heart disease ran in his family. He worked hard but played hard as well. Over the years, I’ve witnessed a mellowness about him. He gives credit to our kids and relationship. It’s like he see’s things in a different way than most. In his youth, if someone locked horns with him, there was trouble. As he grew into a man I saw the horns come down, he’s much wiser with when to lock them… if that makes any sense. I’ve always felt safe and unafraid of anything when around him. Seeing him give back, to a life that kicked him in the teeth when young, made me a better person.
He’s embraced rehab and takes it very serious. Each visit had to go better than the last. If he walked 1-mile one day, it had to be 1.1 mile the next. It worries me. He still doesn’t eat meals when he should, or drink lots of fluids as suggested. His life was a set of patterns and changing them didn’t come easy. I know I’ve driven him crazy at times bugging him to eat more and often. It’s been interesting the relationships that have evolved with people at rehab. He’ll come home and say so and so told him something cool, and he was going to try that!
He’s never once whined about his circumstances. He knows he didn’t take his health seriously. He thought he did, and for the last several years has, but knows his heart has been on a wild ride. This experience really woke him up to a lot of things. Mortality and the possibility of life ending, sooner than later, bring focus and clarity.
What he shared about fading away on the Cath table didn’t surprise me. It interested me… I know we go to a different place when experiencing this. Watching my father pass taught me this. Words can’t describe it. Mike’s close to all our children, the grandchildren too. A very protective and giving person has emerged over the years. When he learned to take a step back from our adult children’s lives a lot improved. I know they thought he was tough and unbending with certain things, but loved them. He knew he had to let their wings take them into their own lives. He tried to teach them, from failure, that life is tough and to position their sails in the right direction.
With the grandchildren, it is different. He knows how hard life will treat them in the future, and wants them to simply enjoy their innocence and youth. I’ve never seen such patience from him than when he is interacting with them. He engulfed them with his protection and I think each knew and felt it. With Ike and Zach, (then 7 and 10-years-old) he gave safe rides on our old Harley. When alone he’d drive it like a bat out of hell, but with me, or the kids, it was the complete opposite. Avoiding busy roads and letting the sound of the pipes become the fun. Each took his hand of trust, leery of the loud engine. They returned with smiles a mile wide. He even taught me how to ride and feel the wind under my own twist of the throttle. With Cinneidi, our now 11-year-old granddaughter, it was different as well. Each took a few years in figuring the other out. When he realized that he was treating her like one of the boys, and apologized, it was only then that she responded. With Aiden, whose now 7years-old, it’s been unique. Nobody climbed all over Mike or grabbed at his face, or hung off him like a little monkey, yet Aiden paid it no attention. Mike just shakes his head and accepts it.
He said, many times before that there was no bucket list on his agenda, I believe him. We’re homebodies, not going out much. Now that were older, it’s really enjoyed! We exchange notes to each other most days. I’ve learned that these notes are how he communicates best. On my Facebook account he’ll often leave messages, intertwined with picture, saying something he wants me to know. I’m learning a lot from what he’s shared with these writings. With most, he has clumsy communication. With the people that break through it becomes easier. He doesn’t connect like most people do to others. I don’t know if it’s his Aspergers or simply not wanting to connect. Tattoos stain his skin, most days they remain covered. He shares that many were put on just to keep others away: A built in defense mechanism.
Have seen him struggle with many mental things these last couple of months. The only extended family member he’s close with is his sister, Charlee. My family is completely different. We are very close and I think his seeing this, and their accepting him, taught him a lot.
We are going to get through this. I’ve been studying on stem cells and how they work. I know this is on the cutting edge of medical science and wish more was known. At work I was surrounded by the best minds in cardiac I knew I had to keep asking questions, like a puzzle, until it made sense.
December 6, 2011
This holiday season has a different feel to it. There has been a moment or two when I wasn’t sure if I’d live long enough to see it. Have been home from the hospital, again, for about 10-days. The last procedure was a rough one. After it was over there was dried blood on my lips. Usually a half hour procedure, mine was close to two hours. The cardiologist, Dr. Murdock, did his best in opening more blocked vessels. The results were successful. The left side of my heart is now getting good ‘flow’. It was frustrating being back, but we had faith in Dr. Murdock’s skills.
The first couple of sessions at rehab have been encouraging. We’re taking things a little slower this time around. What had been 5-7 miles in distance is now back to 1 mile. I try to ignore the numbers because it opens the door to frustrations. I try to take each session serious and get the most from it. During the drive to the hospital, I try to get in the right mindset. Each visit is different than the last. I’ve left some feeling good, others exhausted and close to tears. Once, when walking back to the car, I became sick and vomited. I had pushed things too hard. That was my mindset at the time. I looked at it like an NFL workout. No pain, no gain. I was wrong. It took awhile, and having some equipment turned off by staff, for that to sink in.
I have a new respect for people going through rehabilitation, and the professionals who work with them. I’m not one for making new ‘friends’, but the staff at the hospital have slowly become ones. Chad, Dave, Mckenzie, Evan, and my case manager Tammi, are inspiring in unique ways. The encouragement they give, to everyone, is something I’ve never seen before. Witnessing people come in, with the belief they ‘can’t’ do something, changed to ‘can’, and is powerful. I think back to my first session thinking I was working hard, when in fact I hadn’t even turned the equipment on (plus I was peddling backwards…Lol).
Have I wanted to ‘give-up’ and quit at times? Yes, without a doubt. The last thing I wanted was to be walking on a machine that didn’t go anywhere. During one particular grueling session, I heard some soft music melody come across the ceiling speakers. Every time a baby is born it would play. It reminded me how precious life really was. One side of the building there was a newborn, the other people doing what they had to do to keep living. The dynamics were interesting. I remember walking to the window, a few feet from my bed, looking down and seeing the rehab unit. There were many things taking place in that building at one time.
The psychological parts of trying to stay positive haven’t always been easy. There are good days and then nights that are the opposite. I still believe that one of the tools in living a good life is trying to keep a sense of humor.
I’ve thought a lot about this holiday season and question whether it will be my last. That’s a strange feeling. There have been too many complications and battles not to think about it. I try not to.. I believe there will be many more. A person has to believe and have faith right?
This one-year journal is the real deal about recovery. Some paths take different routes. It’s not about dying or doom and gloom. It’s also not in measuring success at the end of the day by how much you got done. What matters in life is the good that was done.
You never know what the heart will do. With Mike, it is a personal battle he is waging, and determined to win. I’m not sure what the winter will bring. A couple of storms so far but that’s about it. Each day doesn’t have enough hours in it. Simply keeping track of all the medications, refills, and times of day, is a blur. The holidays have never felt like this before. It’s difficult describing. I’m very worried on the outcome. All the hope and will on earth isn’t going to stop dying from taking place. We never think it’s at our doorstep until it becomes a reality. How much trauma can one person’s heart take?
The kindness of others knows no boundary. I see my husband in a different way. It is true you see how tough another is when the going gets choppy. I see him losing weight and the paleness of his skin. However, then I see him prepare for rehab hours before the time. He doesn’t talk about it much. He’s accepted that each day is never a known script. It hasn’t stopped him much from doing things he’s determined to do, that’s for sure. He grows weaker after each procedure. That’s the frustrating part. Seeing him fighting to be strong, and then watching each hit slamming him. Sometimes he sleeps 14-18 hours a day. It’s difficult to watch. Then, from out of nowhere he gets strength to forge forward.
The hospital has a small chapel in it. Beautiful stained glass greets people. It helped me be strong and aware of how little control we have over certain things. I really had to let go and let God. All the research comes back with the same information. The most promising science centered on the use of stem cells. Were we really at the point of no return? The change of seasons brought only more complications. We would get through this… right?
Mike has shared how this has brought a different perception to certain things. I would definitely agree. We are taking things a day at a time. This Christmas season feels like no other.
January 3, 2012
“I think we should go in and have things checked out.” Bobbi said to me, two days before Christmas.
“What? No way, it isn’t happening. Why?” I replied.
“Because your walking a little unbalanced and forgetting words in the middle of your speech. I also noticed your taking your Nitroglycerin more often. I think it’s smart to have things checked out.”
This was not the news I wanted to hear. The last place I wanted to be, this close to Christmas, was in the hospital. Enough already. Yet, I knew, she knew what she was talking about. I was trying not to have her notice the things she mentioned, but the spill she saw me take outside, I couldn’t blame on a little ice. I rationalized everything as stress from the holidays and simply needing to get back on course again.
I was also aware that I wasn’t holding the best poker hand. Hard to argue, holding only a pair of threes. I knew she was right but didn’t want to spend Christmas lying in a hospital bed. What choice did I have? Ignore what the professionals are suggesting, get a few tests, and hopefully everything will show to be aright.
“If CVA (Cardio Vascular Associations) says I should head to the ER I’ll go.”
We were soon in the car and headed for the hospital. Bobbi made the call and everyone thought it was the right move. My last visit (2-weeks ago) to the Doctor went well, but there was concern about possible blockage in my neck. A test was ordered but it was still a week a way. One medication was doubled and another stopped.
I knew the routine well. As soon as I arrived it was into a gown, hooked up to monitors, needles piercing my skin, and chest x-ray done upon arrival. Four or five people, all-working at once, overloaded my senses. Five, out of the last seven trips, resulted in surgery and I was burnt out from all of it. This couldn’t be happening again.
The decision was made to check me in and have more tests. The concern of a possible stroke had to be confirmed or eliminated. A nurse, who introduced herself as Mary, was assigned to my room.
“If you need anything please don’t hesitate to use the button on your bed.” Her voice was calming and she genuinely seemed concerned about my needs. The hospital wing was super busy, trying to get as many people as possible home for Christmas.
That night a CAT scan was given and the next morning an MRI and ultrasound on my neck was performed. The CAT came back looking good but we waited patently on the other test results.
Bobbi was prepared to spend the night. When I protested she replied that it was Xmas Eve and we’d spend it together no matter what. I didn’t know what to say. I knew if the role were reversed that I’d be doing the same thing. Hopefully, the tests would come back looking good and we’d go home.
The day lasted forever. Waiting and not knowing drove us crazy. What if there was a blood clot? What if the blockage in the neck required surgery? So many ‘what ifs’, at this point nothing could come as a surprise.
We spent the day watching football games and talking. Mary, the nurse who was on duty the day before, was assigned my room again. It was comforting knowing this. The day was not as busy as the night before and we had a chance to share with each other a little about our families. She insisted that if we needed anything not to be shy about using the call button. It was nice to introduce her to our kids and grandkids when they made a surprise visit later in the evening. Their visit really picked up my spirits.
I didn’t think anything was seriously wrong but had been wrong about those feelings before. I put on a brave front, and we tried to make the best of the situation. I kept the hospital door closed and the drapes shut. Only a small light across the room eliminated the monitor and bed. I sure hoped the tests would come back good. Watching the people you love worry is a gut wrenching experience.
Bobbi and I talked about the good things that took place in 2011. We celebrated Christmas early, when our daughter, Shay, flew in from Baltimore for a visit. We talked about how proud we were of our kids and how fortunate we were to have family to go through these difficult times with us.
A really nice surprise came when Sean and Jennie showed up with Aiden and Cinneidi for a visit. We always spent Xmas Eve together and they were determined to keep the tradition alive. I tried to put off having visitors but think it bothered them. It wasn’t that we didn’t want them involved; it was out of love and not wanting them to worry. Having people care and love me has always been clumsy. Not that I feel I’m unlovable, but I try to put other peoples feelings before mine and had a confidence I’d get through all of this. It meant a lot to see them. This family has taught me a lot about family and love; through good times and bad. I’ve always had a hard time expressing my emotions but I think they are aware how much the visit meant to me.
After the family left the night continued. At about 7:00pm I started getting angry. The tests were given hours ago and still there was no word on the results. I could see Bobbi begin to worry as the hours passed. Was no news good news or bad news? Mary continued to stop in calm us. Why was this lady named ‘Mary’, on Xmas Eve, so concerned of our well-being? Most the nurses working at Aspirus were nice but there was something different about her.
I was never a ‘button’ pusher’ with calling into the nurses station. If I needed something, I’d just wait until someone came to check on things. The wait became too much and I pushed it. Within 15-seconds the door opened and there was Mary. She probably could tell I was upset by the tone of my voice.
“I don’t mean to be a pest, especially on Christmas Eve, but this is BS. Why haven’t the results come back, telling us at least something? I asked.
“”Mike, your right. I’m an advocate for my patients and this is BS. I promise you I’ll find out what the delay is. There is no reason you should have to spend the holidays here when you could be home for Christmas.” She replied to me. “I’ll see what I can do.”
She did not mess around. We heard her outside the room, on a phone, jacking somebody up. The last words we heard her say were “Don’t you hang-up on me.” They did.
Maybe, at the most, 10-minutes passed and soon a Doctor was at our bedside explaining the situations. Apparently the results were read, but mistakenly faxed to the wrong place. The good news was that all of them came back in good shape. There was blockage in the neck but not enough to risk having a stroke fixing it. We kept waiting for the bad news but it kept getting better. All the blood work looked great and I could leave the hospital immediately. The Doctor thanked me for remaining calm even hugged me and wished us a Merry Christmas.
In no time at all the IV was taken out, monitor wire’s removed and I quickly dressed to go. Things took place fast and it was good news. We weren’t use to that, as mentioned before seven trips resulted in five different surgeries. There would be no surgery and my wife and I would be sleeping in our own bed on Christmas Eve! We thanked Mary for her help. I’ll always be grateful to this amazing nurse and kind woman. We were in our car in seconds and Bobbi was soon working the phone with concerned relatives and family.
The next morning, Christmas, was a special one. One we’ll never forget. We had so many things to be thankful for. I always believed Christmas had an Angel close by in my life. Why did the tests come back with flying colors? Was a clot mysteriously dissolved? Why did a nurse named ‘Mary” play such a role on Xmas Eve? With all the trips to the hospital, the last couple of months, why had we never met? Why did we meet this time?
I’m in no position to answer these questions. All I’m doing is journaling this experience. A lot of things have gone wrong, flip side of the coin, the wrong has been turned into right by amazing doctors and their assistances . I don’t know what the future will hold in the coming months. But I do know that things happen for a reason. This experience has taught me valuable lessons. Just because the mind doesn’t feel stressed, with the holidays, doesn’t mean the body doesn’t respond to it. Even good stress has the heart and body working harder.
A huge thanks goes out to the staff at Aspirus hospital. To all the Doctors, specialists, rehabilitation staff, and super hard working nurses, thank you! I don’t know how I’d ever get through this challenge without the love and concern from my family and true friends. I don’t know what God has in store next year but I’m sure it’ll be interesting. It’s been a long haul, with 2012 sure to bring in more challenges. One challenge will be to attend a heart marathon this spring that the hospital puts on each year.
If the reader of this is battling similar challenges refrain from thinking the worse. Take things slow, keep your eyes open to the things that matter most. They have nothing to do with money or how big a house we live in.
This Wisconsin winter has definitely proven to be a challenge. I feel pride when we finish cleaning up after storms. Bobbi and I hit everything as a team. Looking forward to the New Year and question what it’ll bring.
January 23, 2012
Today is six months exactly since under going emergency Bypass surgery. It seems like a lifetime ago. Life-threating events are certainly life changing. Little did we expect that 2011 would be the kind of year it was. Much is still a blur. In one way, I look at this as my new 6-month birthday. I probably wouldn’t be here, writing this, had I not followed up on Bobbi’s request that I speak to my Doctor about being short of breath. Chances are good there’d would no breathe at all.
It’s been a long haul, at times a real roller coaster ride. For a while, it was one serious situation after another. We often wondered how we would get through it. Everything has changed.
Have been home from the hospital a month and things have stabilized and going well. I have 3-weeks left of rehabilitation I feel grateful for having the opportunity, and place, to heal and learn.
There have been so many different stages of this recovery; understanding, accepting, and doing whatever has to be done. There’s been fear, happiness, pain, desperation, joy, success, failure, all coming into our life at a fast pace.
February 10, 2012
In late January I knew things were going south again. My numbers in rehab slowly decreased and angina increased. Back to the hospital and another catheterization procedure. It was decided that three more mesh stents would be placed in the Left Main area. Now have a total of 13! Also, 12 more weeks of rehab, starting over this week. Feels like I’m never going to complete it.
This last procedure took a lot of energy from me. Where was this battle headed? Were all the medicines, exercise, and diet change, mattering little? Was the disease progressing at a quicker rate than I was prepared to consider?
We are now looking into the possibilities of stem cell regrowth at the University of Wisconsin in Madison Things have been a blur. I understand very little about it. Bobbi’s been studying and writing letters to the University of Wisconsin.
Know that when the going gets tough the tough get going. Haven’t had the energy or time to get back into doing much photography.
February 27, 2012
This weekend was a good one. Saturday, the grandkids, Sunday, kicking back and watching old movies. The ride has been tough but the beat goes on. A large snowstorm is approaching and Bobbi quickly looked at me when hearing the news.
“Your not going to be out dealing with this one I know. Right?” she kind of ordered and then asked.
I understood her concern, but also looked at it as a challenge. It would give me a good read, an indicator, in how well things were going. The last few sessions at rehab have been hard going. I think, I’m trying to push things a little too hard too fast. I want the same numbers I had before. Then I’ll know which way this battle is heading.
On March 14 we meet with Doctor Raval at the University of Wisconsin. Getting records and files transferred has been interesting. CD’s sent through the mail and some electronically, over the computer.
The meeting is to discuss, as written about previously, stem cell research. It’s my understanding that a possible clinical trial is planned concerning my heart complications. A clinical trial using stem cell research. I wonder what this means? A friend of Bobbi’s at the hospital, Boris, helped her track down the latest research. She’s been on a mission to save her husband. I don’t know what to think about any of it. It’s a strange feeling having someone care so much and deeply for you, while at times, you feel like you’re about to slip away. That’s one thing about our marriage; we’ve always had the others back. Through the good times we’ve laughed and the tough times we push on.
We were the most unlikely couple to have met, nonetheless settle down together. Bobbi liked to stay within life’s ‘rules’ and have fun. I tended to ride the edge of them, taking a few bruises along the way. She taught me to slow down and look to the sky. I’ve helped her believe in herself and to live life taking more chances. Not to wonder about things but to do them and feel them. She had to trust in my hand and know things would be all right.
The trip to Madison will be interesting. The last time we visited the city it was loud with protests. This time it is to fight the battle to live. Strange how life works at times.
In the mean time, we’re just keeping things nice and simple. The tears have dried and replaced with laugher and good cheer. I’ll be at the hospital, in a couple hours, to fight the good fight. I’ll be watching the turning numbers on a treadmill, and trying to get them to climb. It seems like this part will never end. Today, it’s what feeds my heart to live.
March 20, 2012
When Tim (a friend of the family) tossed me the key to his new bike, and suggested we take it for a ride, I first refused. With my luck, I’d probably scratch something on it. When he insisted I thought why not? The ride would probably do us some good. As soon as it was fired up, Bobbi swung her leg over the back and we headed east on Highway 29. It did feel good to be part of the warm wind again. The tree of life took a real beating this winter: bending at times, threatening to snap, but holding strong. Like the plants and flowers in Bobbi’s garden, a new positive strong, attitude was beginning to sprout. Record-breaking temperatures across Wisconsin brought up from the soil an early season of green. The birds have started to return and the anticipation to break out the camera was strong. The long ugly scars, which record this journey, were slowly fading in the mirror.
We were each alone with our thoughts. We never talked much on the bike. The noise would often be too loud so we communicated with different touches. If she saw something ahead, and wanted to make sure I’d see it, she’d tap me on the shoulder and point to it. When there was no traffic, I often rested my arm along her leg. It was a familiar feeling, which words can’t easily describe.
Our visit with Doctor Amish Raval, at the University of Wisconsin, went great. What a huge complex of buildings spread out across the campus. It felt strange walking into the hospital. I knew, when we arrived, that it was a destiny resulting from Bobbi’s endless research journey. A journey, which began on a wet July night last year, and now ends in one of these long hallway’s.
Within minutes, a person greeted us and points us the right direction. We arrived 2-hours early, just to make sure we’d be on time. It gave us time to talk in the cafeteria. What were we doing here? Visiting a university of research and medicine, knowing it was a trip that could possibly impact my actual life. I’ve always been a realist, and know when your time comes it comes. Really, what was I doing here? As Meatloaf sang, “There is no Coup De Ville hiding in the bottom of a Cracker Jack box.” What was a ‘stem cell’? I read things in the news about it over the years, some of it controversial.
As soon as we entered the Doctor’s office, I noticed a calming pattern on the ceiling. I worried about communicating accurately with everyone. I did a great job masking my clumsiness but still have a difficult time with it. Sometimes my thoughts race quicker than the ability to form the right words. My concerns were quickly put to rest meeting Dr. Raval. He’s a very kind and soft-spoken man. Before we got into anything, he inquired about how I felt today and if his staff could help with anything right away. This was nice. He then took time explaining everything that was taking place in the clinical trial. It was in it’s third phase and a blind study. Meaning only half of the people involved would receive the real treatment.
First, a mapping of my heart would be performed using a catheterization process. The next involved 5-days of a procedure much like giving plasma. T-cells would be removed from my blood, and then the blood returned to my body. The separated T-cells would then be processed for reinjection directly into my heart muscle, using a special catheter.
After the meeting, there were different written and physical tests. A yellow file, 2-inches thick, contained all the information on the last eight months. Nothing was for sure, and their team had to learn whether or not I’d even be a good candidate for the study. Dr. Raval explained that people would be chosen by how ill they were, the sickest lives helped first. The first two stages looked promising, but there was no guarantee on it working perfectly. What if we were chosen and weren’t part of the half that received the treatment? What then? Was I willing to possibly give my life so that people in the future could live longer? Everything comes with a risk, every hospital procedure dealing with the heart not a sure thing. There were so many things to think and talk about.
We returned to Wausau the next day. Bobbi’s younger sister Lori, and Jim, her husband, visited from Michigan on Friday. Lori and Bobbi are close, as she is with all her family members, so it was nice to see her smile and laugh in that way again. A certain smile that only close families know and feel between them, if that makes any sense. The visit went great and it felt good moving on with life and enjoying the good again. I wished my numbers at rehab would return as strong as they once were, but I’m sure they would in time.
It was a good day and a nice ride. The wind felt good, spring was in the air, with it a came new sense of hope.
March 28, 2011
Little did I anticipate the same highway we headed east on a few weeks back would have an ambulance, with me in it, heading west so soon after. Chest, jaw, and arm pain exploded across my body again. As much as I tried to ‘John Wayne’ it, the issues couldn’t be ignored. I’ve experienced it too many times and knew things weren’t looking good.
On March 23, Dr. Hoffman performed another risky, emergency heart procedure and three more mesh stents were placed into my heart. I now have sixteen.
Dr. Hoffman expanded different arteries to widen the flow of blood where it was needed. It was the most painful experience I’ve ever gone through. I didn’t think such pain existed. Hours after the procedure I laid in the hospital bed hurting and worried. We were in disbelief. The rush of people, all doing different things, went on late into the evening.
When it was over the lights of the monitors blinked and beeped their annoying loud sounds. We were alone in the room, wondering when this nightmare would end. I could feel myself growing weaker. Eventually the pain dissipated and the need to sleep overtook me. I kept the blinds shut and little light as possible overhead.
I was released from the hospital feeling hopeless, though not wanting to show it. Bobbi looked rough. Her eyes were red, stained by tears. As the weight was falling off me the same was with her. It ripped at my soul to witness her pain. What was the point of all this? How would these last three stents added affect the possibility of Madison turning me down as a candidate for their program? I was told that I’d need 60-days of no procedures to qualify. Here we were starting at the beginning again. My plans, in May, to participate in the annual ‘Heart Walk’, which I’ve been using as a motivator, may not be realistic. It’s back to the treadmill, moving as slow as a snail.
What a journey this has turned into. The winds of change continue to blow and, at times, real despair. I have to pull from somewhere the strength to get back on the road and continue. It’s so easy to think so many things have gone wrong, when in reality, so many have gone right. Each situation that developed had the smartest minds working diligently to help. Part of the bypass grafts failed, yet, the one that took, is saving my life. This is a success. Maybe God’s plan was to simply get rid of the ones that may have caused more complications later? They will dissolve into my tissue and the life sustaining one is the strongest needed. The surgeon did nothing wrong, he saved my life. I will always be grateful to him for this. My life has never known a simple or easy path, why should it suddenly have changed now? We fought the battle together and today I’m living because of it.
It would be easy to wonder why so many trips have been taken to the Cath Lab. Why didn’t the need for each stent, all sixteen, get placed into position the first trip. Not three one time, two another, and so forth. This last trip I felt like dying rather than enduring. Pain is still wrenching my body, dulled only by strong medicine. It’s so easy to feel negative and bitter. But, I don’t, I feel fortunate to be alive. What’s been the toughest is seeing the toll it’s played on Bobbi and everyone.
I think of our children and grandchildren a lot. It’s hard not to feel for them. When I watch the grandkids run and play in the yard it can brings a tear to my soul. Wanting them so bad to stay young and unaffected by how brutal and selfish this world has become. On Sunday I had to be close to each, in some fashion, and was. These things make up life’s most precious moments. I’m glad I chased my share of rainbows down to understand these things today.
We had a minor set back, but the journey continues. The last place I thought we’d be is near the starting line again. How much can the human body go through before it calls it a day, or a completed life? Obviously a great deal! They always say it’s not the size of the dog that makes the fight, but the fight in the dog… or something like that. All of us have that extra push, that one last breath, to push one foot in front of the other to go on. When the time comes to shutting the lights off, it will be done. No matter how much man can do in helping the light stay on. I thought, before this, so differently… always thinking about tomorrow, never much on today. When today is all we really have it does set forth a different lens on life.
The body is tattered and the bark scraped. I know I have to take a forty-minute walk today, I know it will hurt. The part I look forward to is holding hands with my wife, each sharing one plug to a headset going into a little MP3 player. Listening together the same song playing. Year’s back I use to cringe from the touch of another. Now, we share the same headset. The touch I feel one with. Bobbi has gone through so much. We always think it’s the toughest on people who are ill, when I believe it’s the ones who love us it’s the toughest on. My own personal beliefs on what’s next have been answered. I don’t fear it because I’ve had a taste of it… and it was good. What families worry about is how they’re going to live without the one they love. That is a much harder road.
At this moment, no lights have been turned off. That’s one thing we all have in common, the moment, and what we’re going to do with it. Soon, it’s time for me, to take a very slow walk, and to share the same headset with the one I love. The one person who has always been able to get close enough to whisper in my ear the same.
Just when you think things could get no worse, they do. On March 29, three more stents were placed in different places in my heart. The count is now 19!
I know the key to things is to think positive. There is a purpose to all this. Don’t always know what it is… but if that saying of ‘what doesn’t kill you, makes you stronger’ is true we should have a break soon. Riding the dragons tail is quite the journey. Enough already, right? Don’t know what to think but know my wheels won’t stop spinning. May hit a little gravel and mud, but every storm does have a dawn. The air will be clear, no longer a medical smell, this too will pass. I have to think forward. Getting back on the horse is tough; nobody has a guarantee it’ll be done with one attempt. I have hope. Each day is a new page in the book titled ‘Life’.
I’d look into the future. Talk is cheap if you don’t pay the price behind it. One of the smartest minds in the Midwest, Dr. Murdock, opened up more arteries. A rough going got better.
The day I was released from the hospital had a few gems in it. Moments that make life what it is, or should be. A letter from our 9-year-old granddaughter, Cinneidi, made my day. Aiden, 6-year-old grandson, also brought me up his favorite stuffed animal “Orange’, the dog, to help me feel better. They were both given and written from their heart. So not only can the heart be broken, it’s things like this, which fix it.
I had promised I’d take Cinneidi to a ‘basket-filling’ party on Sunday, and wanted to keep it. A lady in town is on a mission, each Easter, to give away Easter toys and baskets to kids in the hospital. Sunday was the day different volunteers helped her make the baskets. She worked hard, in helping with donations, across her neighborhood. She loved helping others and made a difference in other’s lives as a result.
So, took one day of good rest and went to the party. Was I going to tell her “Sorry, not this year’, after she looked forward to it for so long? Not a chance. Things went well.
Rehab in 60-minutes. Have no clue what the numbers will be. It’s like getting up, in the ninth round, knocked silly, you do it though, not about to let life beat me now!
Give it your best and hope it does the same.
Always liked the number 19, so now it’s my lucky one.
April 26, 2012
Last year I learned of a ‘Heart Walk’ in town, and some used it to motivate them through their rehab. At the time, it was a long ways off; it would be a piece of cake attending. Never did I think participating in it would mean so much, personally, when it arrived. It happens to concur with my rehab at the hospital ending at the same time. What is usually an 8-12 week program has taken me close to 10-months to complete.
When I think about it, the exercise program at the hospital has played a strong role in my being around to share this. I won’t miss the loud sounds (buffered out with the use of a MP3 player, and the seemingly going nowhere treadmill. But, will miss the people that took a broken chested man and helped him heal and become stronger. Not just physically but in a lot of different aspects. Mentally there were days where my feet showed up but my thoughts were far away.
I notice everything around me, like a bat’s radar at night. When I see people coming in, for their first session, stitches in their bodies still healing, and see the transformation over a period of weeks, it’s amazing. They are coming in after experiencing a game changer in their lives. Some look like they are in shock. I know their thoughts are miles away from exercise. Most have a mate coming in with them the first session.
The staff talks with each person before their work out. They discuss how things are going and ask if there are any problems. At first, it was very clumsy for me. I just wanted to plug in my earplugs, bring my baseball cap down more, and get going on the machines. Some patients talk freely between each other but I’d rarely say anything. Looking like I was busy adjusting the music on the iPod. Truth is I didn’t know what I was doing with the thing. It took me years to simply figure out how to stop our VCR from blinking 12:00. I just knew it had an on and off button. As time went on, and weeks turned into months, the process became a lot easier.
The next step is taking all the tools taught and applying them without the hospitals help. I’m ready for it. There are still good and bad days, but that’s called life. In a couple days I’ll be out of the hospital a month. This is good. The only real scare came when I got up to fast and blacked out, crashing down to the hard floor. I didn’t know where I was when waking up. I just remember coming to and hearing Bobbi shouting my name. It took me a few seconds to mentally backtrack on where I was and what happen. I wasn’t sure if I was waking up from just having a heart attack or if it was something else.
Some of my medications were tweaked because of blood pressure readings of 80 over 63. Other than that, no real issues. When there are I try and respond to them accordingly. Some times, it means taking some small nitro pills or getting more fluids in.
Good news came in the form of an email to Bobbi from the University of Wisconsin. I was still a candidate for an upcoming clinical stem cell study there. Screening was taking place and we’d be contacted in a few weeks. I still don’t know what to think about it. A lot of travel, more procedures into my heart, and no guarantee I’d even be treated with the actual stem cells. In a blind study, only half receive the actual medicine. I thought about the things that could go wrong. Was I willing to give my life so that some day others may be able to live theirs longer, as the result of the study? That is quite the question for one to contemplate and process. More so, when it feels like we’ve turned the corner on things concerning my health. Did I want to risk all of it, with a 50/50 chance of receiving a still in testing procedure? If I could stay healthy for a bit longer I’ll certainly consider it.
Time to get the day started, and get the camera out. Blue skies ahead, and green lights all the way. What more could a person ask for. Glad to be feeling the spring.
May 23, 2012
The goal to move on with life, regardless of what, has kept me busy. The Heart Walk was a success. Bobbi and I started in the front, yet the last couple to finish. People were already in their cars heading home. It was a nice day. Along the way, we took a few breaks just to soak in the sun and talked. The rehab was finally over and it felt like an achievement. Was it really over?
That’s what I’ve had to come to terms with. I couldn’t live concerned about the next beat pumping in my heart. My body has adjusted to everything that took place. It’s been ten months and the bombardment of issues has finally slowed. Plans were to return to photography projects and that too has been successful. Out of the 2,500 pictures taken maybe, 100 were keepers. From that, maybe only 20 will actually be turned into canvas prints. Sure seems like a lot of work to end up with only twenty prints. We just missed taking photos of an Eagle close by, maybe 50-feet above us. No memory card was in the camera.
I think back about battling this silent killer. I understand better why they call it such. It can sneak up from anywhere, the best times in life, and quickly turn it into the worst. I mentally looked at each process as a challenge and not a problem. We get through the mud or lay back in it and whine about the trip. Sometimes pride stops us from letting someone help us, and sometimes shear determination from inside to say something isn’t good enough. Then there are the moments where your thoughts and wishes mean nothing. An illness will attempt to dominate the day. That’s what made this so uncomfortable, besides the impact on our family, is the domination and control. Before this, I never thought that I wouldn’t live to see another morning. It has a commanding presence and when things go wrong they can snowball quickly. I think when we somehow come through it we see everything different. The people in our lives seem to matter the most. It’s a second opportunity to live and do things different. How many people actually get to do that?
Crossing the finish line at the Heart Walk finished the end of hospital rehab, but also the start of continuing the tools learned in it. Eating right, exercise, and a conscious effort to live life wiser is reality today. I think of my youth, when I tempted the odds, and just shake my head; driving the motorcycle too fast, jumping off high rocks into water, (ignoring signs reading ‘death’ may result). I know we only live once and that this whole experience was meant to slow me down and have me see the life in front of me. Not the one, which never seemed to be good enough and always wished to be better. It’s great to have goals but when they are all we think about we’re never okay with how today went. Maybe at times, but it was always onto the next for me. It isn’t like that anymore. I take more time to simply talk and relax more around my friends and family.
Today is 10-months exactly since the bypass surgery. Why my body rejected some of the graphs I don’t think we’ll ever know. Not everything in life goes perfectly. I’ve questioned why so much time has been spent keeping this journal. After experiencing certain events, the need to be an advocate for them becomes focused.
I’d say this is one of these times. Never expected, unplanned, and unsure of where it will go. We are still walking on eggshells. There are good days, and there are bad. The type of disease I have, from what I understand, is both severe multivessel coronary artery disease, and micro vascular. There is no ‘cure’ or reversing the damage. The key to everything is diet, exercise, and medication.
Have adapted well to everything and learning how to live with limitations. I appreciate the quiet evenings relaxing outside.
I’m reminded of the limitations when I get up too quick or sudden pain strikes. A lot of time it catches me off guard. I’m still on a lot of different medications. I keep a little bottle of nitroglycerin tablets close by. Some days it’s not needed, other days 4-5 times it’s used. Life is what it is and I’m grateful living each day in it.
June 15, 2012
I knew, in the back of my mind, that the good going was short-term. Last Wednesday I found myself back in the ER and then quickly readmitted to the hospital. Had finally reached the 60-day requirement for the stem cell trial (64 exactly) and it was a real let down. IV drip, nitro drip, and sacrificing vials of blood again seemed surreal.
Knowing it was too good to be true changed quickly. I was burning through nitro tablets six to seven times a day. Pain followed my every waking moment. I pretended the best I could, from keeping it away from Bobbi and family, but they’ve been through this route too many times.
The next day, on Thursday, it was back to the Cath lab. My groin still felling like hamburger from the last punctures. I was lucky that my cardiologist, Dr. Murdock, was working that day. One thing about the experience was the peace I felt having my bed rolled into the surgical room. The staff there I’m on a first name basis with, and even through there was concern I felt a real peace in the procedure. I didn’t like it but the comfortableness felt reassured me that I had the right people in the room. Kind words of encouragement from them, throughout these last 11-months helped greatly. I don’t know who was more let down by my return, them or I. I have to say hats off to each and every one. They have become family to us. Many just shook their heads and I could tell they were generally concerned. Now what? What was the problem this time? Please no more stents! Nineteen were too many. Enough already. When Dr. Murdock stopped by, before the procedure, I felt calm mixed with the concern. The roughest part were seeing some of these people and once again having to contact family members that thing had turned south. Once again I tried to put on a brave face and mixed humor into the conversation. Told every one I thought I was on an episode of ’punked’.
I knew the puncture into scar tissue would hurt. No matter how much medicine was used, I held my teeth tightly and prepared for it.
The result of the procedure showed that scar tissue had developed along 3 past stints, placed in an important area. The scar tissue blocked blood flow, which caused the unbearable anguish. Dr. Murdock did an Angioplasty.
Angioplasty is the technique of mechanically widening a narrowed or obstructed blood vessel, the latter typically being a result of atherosclerosis. An empty and collapsed balloon on a guide wire, known as a balloon catheter, is passed into the narrowed locations and then inflated to a fixed size using water pressures some 75 to 500 times normal blood pressure (6 to 20 atmospheres). The balloon crushed the scar tissue, opening up the blood vessel for improved flow, and the balloon is then withdrawn.
The operation relieved much of the pain. There were bleeding problems, twice, during the night, but came as no surprise considering how many blood thinners working in my system.
Dr. Murdock then explained that there was an operation, used rarely these days, using radiation to burn away the scar tissue. There were no guarantees how long the procedure he did would last.
While resting in the hospital that night a million thoughts consumed my brain. When would all this end? Would it end with my eventual passing away? Would things suddenly improve and I would go on to live another 20-years? I knew death had no clock and that we’d continue to take things one-day-at-a-time. It was sure difficult to remain positive and draw up from the bottom a new and positive attitude. I had to though, find it somewhere. When the only choice is to find it or be miserable the options weren’t many. Depression set in but I also knew that too had to be reversed.
At the same time a real gratefulness filled me… thankful for Dr. Murdock, thankful for the kind and compassionate people in the Cath lab. I can’t seem to express, or find the right words, to describe the warm feelings I have towards these people. The people at rehab I feel the same towards.
On Friday, the day I was cleared to return home, Bobbi immediately jumped on the Internet to research who and where the radiation treatment was performed. It’s called a ‘brachytherapy’. A strange road it lead to. The University of Wisconsin, in Madison, had one physician who performed the operation. The same doctor who was leading the stem cell trial. We met with him a couple months back, Dr. Raval. What were the odds of this? Of all the doctors in the state it was the one who already had all the files and films of my case? We looked at it as a positive sign. They plan on getting back to us soon about the procedure. Bobbi amazes me. What a wonderful and amazing person my wife is. I’m so fortunate to have met her some twenty years ago. Going through this experience has brought us closer than I thought was possible. It has certainly taken a toll on her. I couldn’t believe how quickly she discovered all the information and made all the necessary calls. I know if things turned south again, in a real bad way that I would have learned what true love was while on this earth. The hardest part in all this is still watching the impact playing on our whole family. One-minute things are looking good and then ‘bam’ back to the beginning. I certainly don’t look forward to the radiation brachytherapy procedure. I can take a good shot, but these arms are getting tired of blocking the punches. You just push on and bear down mentally with it. Life has handed down much worse to some. I feel fortunate in a lot of ways. Nobody ever promised life would easy for anyone. We all have our struggles of some type. That’s why the word ‘believe’ conjures up strength. When you really have no options going forward is all one can do. You’re going to fall, if you do it right. It’s what we do when it happens that counts.
So now that’s where things are sitting. We’ve stopped our contributing to iReports we use to do with CNN news. It’s a program used for citizen journalism. An interesting experience for sure. We met some good people through the program. We used the format of iReporting to lift others up and picked one new stranger or nonprofit organization weekly to help randomly. We involved our entire family in it. Many of the projects were sent on to a lot of different media outlets. We ‘blogged’ these at another website, The Sequoia Project. Our goal was to spend only a year doing different iReports… turned into a bit longer. Some really inspiring people were met along the way. Some pieces were tough to do when the area took some tough shots. Helping tell the story, of a struggling small business, for a year with CNN, floods, tornados, missing loved ones. Even doing these for pieces was important. How many people, sitting at home on a computer, can produce various news stories and later watch a few on TV? Helping others get their messages and actions out was very rewarding.
When this disease commanded attention everything was put on hold. It was a enjoyable experience and hundreds of hours spent volunteering. The city we are from, Wausau, received a lot of national attention in directly, because of the short documentaries picked up by their news department: we always used a pen name, WausauFamily, to keep our identities unknown. A story of shelter for homeless veterans was used on TV and millions learned of it. Maybe it became a beacon of hope to a vet needing a hand up? A warehouse project that recycled electronics, the Good New Project, with proceeds’ helping to build homes for families overseas. A very cool program and a short story lead to their receiving hundreds and thousands of views on world news. These were good accomplishments. Never once charged anyone for anything, which took a good hit to our own financial struggles but was worth it.
July 13, 2012
It’s 2:00am in the morning and I’m sitting alone in our living room. Sleep has not come easy of late. Three days until we travel to the University of Wisconsin, in Madison, for the brachytherapy procedure. This is the thirteen time in the hospital within the last twelve months. In exactly ten days, it will be one-year to the day of the bypass surgery. This next trip to the hospital is the first planned procedure, the rest were emergency ones.
The living room is lite only by the glow of the computer screen. I see the steam rise out of my cup of coffee and think about my wife still asleep in the bedroom a few feet away. What a strong woman she is and continues to be. I know that she’ll soon notice that I’m no longer in bed. The only sounds I’m hearing are car tires going past our home, and the sound of the keyboard after each letter of this is picked at, one finger at a time, shaping the words that shared. The purpose is to leave a trail of some sort, to help others who find they are traveling the same path. Will these keystrokes do this? Why this is important I don’t know. In a way, it’s helped me sort through all the events that’s taken place.
How will this radiation treatment turn out? Alone, with just my thoughts, know it won’t be an easy procedure. I’ve only been out of the hospital 5-weeks since the last. We’re hoping it will be the last before we can possibly consider the stem cell study. The next few days will be spent with the family. The children miles away are constantly in my thoughts. This must be difficult for them. The same for family members close by. I’ve tried my best to put on a brave front, placing their needs in not worrying before my own concerns. I think it’s helped both. Today, when Bobbi goes to work, little Aiden and I will be spending the day together. Later, this weekend, will be spent with everyone. I look forward to this time. In the back of my mind I question whether it’ll be the last time I’ll see them. So many complications have filled the last 12-months. From my body rejecting most of the bypass grafts, to unexpected bleeding and months of rehab. What a ride it’s been. Sometimes the road to better health is easy to travel, and sometimes each step is an unsure one, shaky and unbalanced. I can’t seem to find the right words to describe the appreciation felt towards the many professionals who gave of themselves to help. From nurses, doctors, their assistants, friends and loved ones. My eyes are open to so many new things.
The sun is now lighting the morning sky and a new day is upon us. With this being the last update it too means something. This last year has been spent fixing a broken heart, but at the same time, my heart has been filled with the things that really matter.
The Internet will record and save these words forever. Long after I’m gone I hope they’re read by others who are on unsure footing with a struggle of some sort. That they will be given hope, and renewed faith. Staring mortality in the face does change many things. How we live, how we think, what we think, all are focused a little differently. We do have only one shot at life and won’t live it perfectly. We are going to fall, and we’re going to have illness. What we give of ourselves to others is so more important than what we take. This year has brought so many different things. The tin man has found the heart he strived to find. It may be a little beat up, but it’s found and filled with the right things that give it the life it pumps. It’s not about the ‘things’ and ‘stuff’ we accumulate. It’s about the love we give and let in. It’s about helping others. This is one tough world all of us live in. With all the bad taking place in it there are many good things as well. It’s easy to get lost in the bad. The good is out there; we just have to see it when it’s in front of us… or make it when there isn’t. It’s the small things we do each day that matter the most. It’s about the attitude we leave the house with each day. It’s about finding a smile during the most difficult and worse of times.
July 18, 2012
The brachytherapy procedure took place as planned. The University of Wisconsin was like walking into another world. There were so many people, walking in different directions, at once. We ended up having to visit their ER department one day earlier than our appointment because of severe angina. You’d think a hospital this big would lose some of their people skills. This was far from the truth. We really felt like the staff and different doctors cared for us in a personal way. Dr. Raval showed us the procedure on a CD that recorded what it actually looked like. At first the contrast dye was blocked from entering the heart. After the brachytherapy it showed blood spreading across the whole heart. It was interesting to see.
The procedure lasted about 2-hours. Wish I could share it was pain free but there were moments I’d rather have been fishing! That’s the way life is at times. At least pain lets us know we’re still alive. Now back to rehab and moving along with life. Plan on soon volunteering again in the community and living life as normal as possible. It feels like the treatment worked. Was given before and after pictures of the heart blockage and they are night and day in differences. We’re hoping for the best and taking things day to day. I’m really hoping this will be the last procedure for a very long time!
October 12, 2012
Taking everything one day at a time. Have tried hard to get back to how life was before this disease entered my life. As a photographer I’ve tried to concentrate on this. I feel like every photograph is a bonus one.
Some days are good, and some not. On the rough days a fear of things turning south again, at a fast rate, concern me. I refuse to let it dictate what kind of day it’ll be. I’ve avoided writing on it so I don’t think about things. I do so with hopes that this experience will help others long after I’m gone. I’m so tired of it consuming so much time in my thoughts. I feel like it’s a ticking time bomb, not sure when or if it will go off.
I feel so limited in doing the things I once took for granted. A simple walk, exercising, can sometimes be a huge hurdle. I try to keep a positive spirit but must admit it’s difficult. I feel like I’m pretending that all is well when in reality there is a great deal of pain. Emotions turn quickly. I look at life so differently. The small things matter the most. The time spent with family means the most. I’m so tired of worrying them so stay quiet.
Bobbi and I try to get out of town as often as we can. The process is difficult in remembering to take a long all the medication and making sure there is enough to last the trip. Some days there is a lot of private anguish and worry.
I want to say all is well and getting better but know that they are not. I sleep a lot and tell no one. When I need to take a nitro I get up and do so while no one watches.
What a week. I knew it would be a difficult one during last weekend. Pain started radiating down my left shoulder blade and shooting up to my jaw. At first, I didn’t think much about it. I used nitro pills relieving it and simply put up with it. Bobbi and I had our two grandchildren sleeping over so didn’t want to go into the ER until after we took them home on Sunday. Figured all I’ve gone through these last 15 months it was no big deal. In the back of my mind, I knew, there was some type of problem. I was so tired of trips to the hospital. I’ve been use to swallowing back pain. I could go a few more days doing so. We were having a great time with the kids and they were getting along. The pain reminded me how precious the weekend was. We planned on taking them to see a movie on Saturday night but it had sold out. We decided to catch the Sunday showing. All of us went out for supper and returned as planned the next day.
The pain grew worse on Monday. Figured I’d suck it up until an appointment with CVA on Wednesday. Madison needed a stress echo and if there were problems they’d show up during that test. At noon I learned on TV that Michelle Obama was planning to visit Wausau on Friday. Tickets would be available on Tuesday morning at 9:00. Bobbi is inspired by the First Lady. The things Michelle did for kids health was impressive. I wanted to surprise her with the tickets so arrived an hour early, before the doors opened. While standing in line the pain increased. Again, when this happens I tell myself it’s nothing to be concerned about.
Later on Tuesday I knew there was a difference between regular pain and what was being experienced. I planned on going in, having things checked out, and returning home before Bobbi came home from work. Just in case I left a note on the table saying I was having a check up and would be home soon. Not.
I despise going in. The who routine bothers me. Hoping for the best was fruitless. My body was telling me to not be a fool and to do it. Minutes after arriving I was flat on my back, needles inserted, x-rays taken, and given oxygen. Just as quickly representatives from CVA came in to see me. Even though my numbers looked good (as they always have), they too knew things weren’t normal. The decision was made to have me spend the night and get stabilized before the stress test the next day.
The next day the stress test didn’t turn out too well. It was recommended that I go into the Cath Lab right away! Damn! The first few were no big deal, but this was to be my fifteenth in as many months. Each left me a little more swore than the last. Tried to keep my spirits up and remained friendly to everyone. By this time I knew most by name. I didn’t want anyone to see how much I was hurting. I trusted Lori Erdman, at CVA, a lot. She contacted Dr. Murdock and came back into the room and recommending the trip. She even contacted Madison and spoke with them about the stem cell program and what was exactly needed. I asked Lori what she’d do and she said to have the procedure done.
It’s hard to describe the feeling of lying on a bed and having it pushed down long halls, with Bobbi also helping direct the bed. When it was time to say good-bye I tried to remain joking with her, but seen the fear and tears on her face. It is so hard to see. I figure if I made everyone comfortable that it would help everything. I also think that attitude has kept me going when others may have given up by now.
The procedure showed 90% blockage in the LAD, again. Another angioplasty was done. As soon as they opened things up blood rushed back into the side and bottom of the heart. It was complicated because of all the stents (19). Some stents were inside other ones. I was relieved to learn Lori and Dr. Murdock stayed in touch. I knew all the doctors at CVA were good. But just felt more comfortable with the two of them.
After the procedure it was another night in the hospital. What made the situation stranger was that Bobbi’s Mom was also in the ER miles away. A whole lot was on her mind. A lot was on everyone’s mind and thoughts.
On Thursday I was given the green light to go home and immediately took out the IV’s and disconnected the wires in seconds. The nursing staff just shook their heads. They’d seen it before. Now it’s back to rehab for a couple months, 3 times a week. Something I’m not really pleased about because the last time lasted ten months!
The next day I was suppose to take it easy an try to relax. The first 48-hours were important. Where the procedure took place I couldn’t stop the blood from seeping out. I left the bandage on, thinking that the seal would help it. Instead of taking it easy, I convinced Bobbi that we could still go see the First Lady. The doors opened at 1:15pm and the speech planned at 3:00pm. We arrived at Marathon Park around 11:30. It’s a good thing because the line went on forever. Plus it was misting rain and unpleasant. I have a hard time being around groups of people, so did my best at staying calm. I put in my earplugs to help block out the noise.
It was one long wait! Mrs. Obama didn’t start her speech until after 4:00pm. At times I wasn’t sure I’d make it standing for so many hours after being out of the hospital less than 24-hours. Again, I knew it was important to Bobbi and continued to tell her things were fine and I was enjoying myself. This was probably a once in a lifetime experience for her, and this made it a priority to me.
After the event was over it took about three hours with things feeling better. It was worth it. The look on her face while hearing Michelle talk was worth it. Each of us took a camera and enjoyed taking pictures. In the old days I would have had a pad of paper, keeping notes, for a CNN report. I’ve stopped contributing months earlier. Decided to send just a few pictures to the station with no write-up. I promised a few of the producers I’d cover hard copy news, incase something developed in our area, but that was about it. During the event it was hard to concentrate. My body was telling me to sit down, and that I probably should leave and wait in the car. I wasn’t going to listen to all that. Pain was just weakness coming out and everything was a mindset. Had been through so much I was confident I’d be all right.
When it was over, and we were back home, it felt great. Bobbi called her sisters and learned her Mom was also growing stronger and was stable. This was great news.
Back to the grindstone. Waking up each day unsure how it would end. Hopefully with a pictured sunset signaling the end of it. With winter growing closer the beautiful sunsets wouldn’t be the same. I really thought I was bouncing back from things. Each weekend Bobbi and I went to a new place to visit. Somewhere we’d never been at before. It was fun. I look forward to getting back to it, soon. I refuse to give up and take a poor me attitude. I had so much to be thankful for. I was alive! A little sore at times but everyone had a little pain in their lives. I may have a broken heart but not in the areas it mattered most. It was far from being broken in all the areas that count the most. This experience has brought me closer to everyone I care and love. If the trade-off is this, I’ll take it anytime. What hurts me the most is having these same people worry about me.
I know we are not done with this experience. The little breaks between things is nice. There is such a difference in perception on things. The people we love and call friends mean more knowing that, at anytime, the goodbyes could come unannounced and unspoken. I don’t want to be remembered for the time I was sick. I wanted to be remembered by the good and loving actions Bobbi taught me in how to live each 24-hours. That’s why I keep a lot of things to myself. I may not have control over what happens but I certainly do in what I project and in my attitude. Not all days are good, and it’s a difficult thing to do. But mind over matter is powerful.
November 1, 2012
WOW! What a twenty-four hours. Hard to believe everything that took place. On Saturday night the gums of my teeth, and tongue, started to slowly bleed. When I was discharged on Thursday a new medicine was prescribed. A blood thinner…. go figure, my body rejected it. It was late in the night so packed the spots with pressure. Didn’t really know what to do. Ended up cutting a piece of clean cloth and applying pressure with that. Should have stayed awake to see if it clotted, but fell asleep. Woke up choking on my blood. My whole mouth was black and worse than any Halloween mask. Bobbi made some calls and I was in the car headed to the ER.
Things didn’t go to well. Unfortunate workers had to listen to my thoughts when asking me questions. I was saying what my mind was telling me, and slaying the messenger. I was tired of all of it. People asking me what numbers were what on different things. It gave me flashbacks to the little smiley faces that turned to a frown. Things didn’t go well. Too many people surrounding me to fast. The sound of irritating voices asking me the same questions a million times had me blow a fuse. The more things went south pain then radiated into my chest. An IV of nitro was hung up and things mellowed. When the people arrived for chest x-ray I told them to wheel it on out of there. I wasn’t going to keep getting x-rays and glow in the dark. Months of frustration were doing the talking. Having Aspergers, when certain situations are overwhelming in sensation it’s either fight or flight. Usually know all the triggers and I’m good at not letting things bother me. Bobbi’s soft voice calmed me down and then I felt stupid for having not dealt with things better. When one doctor compared the bleeding to a period not stopping that was it. Knew she meant well.
I was admitted over night and the nitro was slowly cut back. The bleeding subsided and before I knew it I was in a hospital bed trying to figure out how to turn on the TV for football. I had a bunch of sterilized gauze and let the medicine that was used leave my system. This morning everything looked good and I was allowed to come home. That part was kind of funny. The nurse working said it was a go on the discharge but warned me not to take out the IV’s and stuff myself. How true. Bobbi showed up, with some hot coffee, and we waited things out.
Now I’m home and resting. I think the situation freaked Bobbi out more than it did me. I knew that a lot blood had drained to the stomach. Not a good thing but some days suck more than others. The important thing is everything is manageable. CVA knew what decisions had to be made and sided on the side of caution by keeping me in overnight. It was the right call, didn’t expect it. So is life when one thinks about it. We never know what curve balls will come at us, at any time. One minute you could be planning a short trip to the store and the next second everything changes. What we do, and how one responds, is important. There is no manual when it comes to dealing with a disease. Appreciate the good days. I thought a lot about the trips Bobbi and I enjoyed on the weekends walking. Never far but at least doing something. We laugh a lot!
Plans are still to hit rehab, get some music together and get ready to count the numbers on a treadmill, which is OK.
November 7, 2012
Have another stress test, of some type, in a few days. Know it’s not going to look well. The last one a few weeks ago brought on two hospitalizations within one week. The university needs this one for the study to simply begin. I’d like to have everything stabilized. It looks like maybe another round of brachytherapy is in the cards. The top of the LAD continues to shut down. I understand it as a large vein that maybe feeds a quarter of the heart. It has to remain open. My body rejected a bypass there, and there’s a lot of stents attempting to keep that needed flow open. Two stents have stents inside them. Today’s test will be medically induced and not on a treadmill. Bobbi asked me last night if this brought worry to me. I told her that it didn’t. Yet, I have to admit, there is concern. Using the nitro more and breathing heavier, doing regular tasks. Need to get our home ready for winter. Pipes to shut down, lawnmower moved downstairs. No big deal. Each step I’m reminded that this battle is far from over. It was nice catching a break this past summer and fall. Each week we picked a new area of the state to visit. It was a lot of fun. Wausau is the entrance into the great forests of Wisconsin. Put a lot of miles on the car. We managed to visit family in Michigan’s northern UP. We took a lot of photography. The fall brought bright colors of orange and red. A lot of sunsets captured and recorded. The skies show change with the airs crispness. The time we spent together, with each other, friends and family, was well needed. Have to think positive about todays test. Right? Asked Bobbi what the result of simply doing nothing, in the area of concern, and she looked at me funny, though not in a funny way. We shall see. Sure had a lot of worry this past week with living on the east coast and Hurricane Sandy targeting America. She goes to school and lives in Maryland. Too close for comfort.
November 12, 2012
The test went smooth. It was kindly explained what the procedure would detail, and took around 3-hours. First, an IV was placed in my arm and images made on a chair that spun slowly. Then another wait, until the medicine was shot into my veins and blood pressure taken throughout it. I could feel my chest react like it did while exercising. I was soon out of breath and close to gasping for air. Then waited about 45-minutes and had more imaging done with the chair that spun slowly.
I wasn’t sure what it would show. It’s been such a rollercoaster ride that nothing would surprise me. Physically, felt like I’d been in the ring fighting. Sore, wore out, and still a little freaked out from the bleeding problems a week earlier.
The test showed some kind of fancy long word that even Bobbi didn’t understand. What we learned is that I had suffered a heart attack, sometime during the last 6-monthsThere was dead heart muscle, near the bottom of the heart, where the LAD (that’s continues to close) supplies. The lack of flow to the area is killing the muscle.
Bobbi made an appointment to Madison for us to meet Dr. Raval. I’m really unsure what this will fix. He’s a man I trust and we’d really like some answers. The CVA, who I’ve worked with in Wausau for cardiac work, are making the referrer. That’s been a bit frustrating. Four or five doctors, 17 procedures… yet no answers. That’s not a bad thing about them, not even a little. This case has baffled many. It would be nice to have the same doctor each time but during emergencies you get who is working. All, I feel, have done their best. At the same time, how many times can I keep going through this same ordeal? Was I losing the fight? That’s what I want to know. They say my heart is strong. Imagine that! A warriors heart… it makes no sense, considering everything that’s taken place.
Heard from my sister, Charlee, and Shay, each may stop for a visit early in 2013. Trying to not think about it. I can’t explain how much I miss both.
The election is over! Was sore, but Bobbi and I went to the polls and cast our vote. During the night we turned on the TV following on the results. Healthcare was a life and death issue for me. Would I no longer have insurance after the insurance cap, or would there no longer be one?
As people know, the president was re-elected. We’re Independents and never thought our vote really mattered. Bobbi jokingly pressured me to write him and congratulate him on winning. I thought why not, and wrote the letter. I tried to share how this recession was hurting ours, and millions of other Americans families hard. Were we surprised when he personally read the letter and took the time to handwrite a note back thanking us. This brought all kinds of world attention! The Associated Press visited our home and did an interview. Newspapers across the state had stories. I used the experience to show the high-risked teens I mentored with a positive story. It was cool to write the most powerful person in the free world, perhaps the in the universe, and connect in a personal way.
We don’t get caught up in all the political things around us. At night, when the phone kept ringing, from pollsters and special interest groups, we disconnected it. Why can’t each side sit down and get our problems worked out? They’d rather see the fall of it than anything else? Each side should be ashamed with themselves. Glad it’s over and that there’s no healthcare cap for existing conditions.
Three weeks will bring news about what’s next and the stem cell study. Stabilizing the LAD is most important. This has been one long battle. It’s taught me many things. Our main concern and gratefulness are the holidays upon us. Not looking forward to another cold and brutal winter. The photography is nice, at first, but it’s a lot of travel. I’m also determined to run again. Don’t know when, but I will. There have been good days and bad… lately, more bad than good. There is nothing we can’t get through no matter what type of day.
November 24, 2012
What a 2-weeks it’s been. After watching the Bears get whipped on Sunday Night Football, problems resulted in another 4-day hospitalization. It’s become so frustrating and physically draining. The Cath Lab also busted some clotting up, at the bottom of the LAD. The initial contact with the ER was disastrous. Conflict immediately with the attending ER doctor, seconds after he entered the room. Each time I’m hoping it’s the last time I have to deal with that whole process, only to have it repeated unexpectedly weeks later.
The day before Thanksgiving, (on the 21st) Bobbi and I went to see Dr. Raval, at the University of Wisconsin in Madison. The appointment went well. We must talked for two hours. He explained to I have a very aggressive form of heart disease, and my body is slowly rejecting attempts made at combating it. It started when the grafts closed following the bypass surgery, and has continued since. As far as the stem cell study goes everything is temporary on hold. I can’t seem to get ahead of the curve ball on this. The good news is that everything is ‘wide open’ elsewhere.
Bobbi discovered in her research that a certain percentage of people, don’t respond to a type blood thinner I was on for a long time. A gene that only one percent of the population have. It may explain why there have been so many past problems. I think Dr. Murdock and her were on the same page when switching the thinner to another.
We shall see. The holiday season upon us and we’re going to try and lose ourselves in this. What a long year it’s been. I thought this past year would either bring peace and no further complications, or that something bad would transpire and it’d be the end of the line. All of it’s been difficult to wrap the brain around. While talking with my family doctor, Doctor Anderson, he hit the nail on the head with a comment. I was lucky not to have had ‘the big one’, but that this was like dying of a thousand stings. That really stuck with me. That’s what this experience has physically felt like. Just when they pull the stinger out of one area, and suck up the pain, another one decides to stab another stinger in.
Regardless, the determination to squeeze more life… out of life, remains. I know, in the long run, that my time will eventually crossover into the unknown. My soul will know when it’s that time. All I can do is stay in the batters box and swing away at the pitches. Some of them are going to hit me, and have. Yet, I know it also works the opposite way. A mellow and special Thanksgiving was experienced last Thursday. That’s hitting one out of the park in my book. This past weekend the two grandkids, Aiden and Cinneidi, each spent the day with us. That was a lot of fun. Bobbi surprised me with a card that had powerful writing on it. I’ll share it.
“The most beautiful stones have been tossed by the wind and washed by the water and polished to brilliance by life’s strongest storms.”
Little things like these are the important things in life. This past Thanksgiving brought A LOT of thankfulness to things once taken for granted. Yes, there have been a few minor issues in the emergency rooms, but they are some of the worst moments in life taking place during those seconds of time. The team of doctors and their assistances, here at Wausau’s CVA, and at the college in Madison, have all worked hard at keeping me alive. When scientist’s of the heart share with me their un-sureness of things I know a real battles taking place. It is a battle between hope and heart disease in so many ways. Took a few good pitches these past few weeks, got beaned a few times, but life goes on. Life, in itself, being healthy, is a battle. Nobody gets a free ride through it without bruises.
The week started out like a rotten egg but is ending on a positive note. Things on this end were all manageable, and received great news that my mother-in-law was discharged from her hospital stay. She’s the role model of a mother I’ve known and has been fighting a health battle. Things are looking better. Also learned Bobbi’s Uncle also was in the Cath lab and it showed good results. Strange how a week can start out so rough and end up on a good note.
Went into Cardiac Rehab yesterday and talked with Tammy, my coach. We’re going to play things safe and go in once a week for monitoring. Know everything that needs to be done, exercise wise, and have stuck to it rigorously. Everyone wishes they knew what kept shutting down the LAD heart artery. Not sure now if it’s scar tissue or a problem with the blood thinner medication. An Angioplasty was performed over the area again, but has closed three times in the same area. Where it closes provides a large amount of blood flow to the front of the heart.
Can’t let not knowing or understanding something eat at every second of your 24-hours. It’s hard not to do but is a mindset. I’m not naive to think everything is now fine and there will be no further problems. I’m determined to try and live each day simple. It’s really has consumed the last 16 months. Before all this my photography work was really taking off. Then WHAM. There is a lot of guilt falling ill. It strips you of your identity.
Also still feel bad about the last ER trip. It was a serious situation but I could’ve dealt with it better. Just because of having Asperger challenges doesn’t mean it gives me a green light to be rude or say inappropriate things at the wrong time. People were simply trying to help and I dumped my frustration onto their day. The important part is to try and make amends and that’s what I later did.
I wish I could deal with this myself without including anyone. The concern and worry it places on others makes me feel uneasy. I’m use to caring for others and when it’s returned it feels weird. I don’t want our kids and family to worry. I feel confident that I’ll get through anything. Certainly not going to quit and throw the towel in. So many others have things far worse than this. In the end, if it brings my own, it won’t be because it wasn’t an easy fight. I try not to think about it. I know if the worst took place, at anytime, I would have lived a life knowing what living is about. Love and hurt, success and failure, buck list has everything checked off. I’ve lived a good life. There are days I want to quit. They are selfish thoughts. The tough times define and bring out a persons character. Writing all this is going to someday help others wrestling with heart disease. It will help them believe in themselves. Today is a good day and it will be a great weekend. Still sore as heck from the past procedures but so is life. Pain reminds us we are alive. We all have it of some type. I often think about the saying of God never giving us too much that we couldn’t handle.
In the last update I mentioned that when you’re dealing with a disease that sometimes you lose your identity. I was wrong. Have thought about it and would have to say that the experience goes on to help shape the character and person we are. How we deal with the situation helps us fine-tune who we are. We have choices when becoming ill. How does one deal with it? Do we whine or do we suck things up and bite the bullet? I think many stages are a factor. Attitude is the biggest. Not all days are good. Who ever promised life wouldn’t ever hurt or be painful? None of us get out of it alive.
It’s been a long two weeks but time to get back at swinging at the pitches and moving on with life. I have yet a lot to do. Mentally, I have to grow stronger physically over the winter and prepare for a new year. There’s lots of work and living to enjoy. Made it over the latest speed bump in fairly good shape and hoping for some smooth roads for a while.
January 15, 2013
It’s been quite awhile since updating these writings. Trying to not think about what’s taken place the last year and a half. My mind is blank when it comes to writing about it. Each day my chest reminds me that ‘not thinking about it’ means little in actual reality. Getting back to living a regular life has been a challenge. Time is what seems to have slowed down. Projects like shoveling snow, going up and down stairs, take a bit longer. Then I think back to a time when the tasks were impossible to complete. Heart disease definitely makes it’s presence known. What I’ve learned during this time has been important to take in and absorb. How I once looked at life is now a completely different vision. I imagine most going through similar life-changing battles would agree.
I’m amazed when looking back at the whole experience. It felt like that TV character who won’t seem to go down when shot. A good flinch takes the bullet, but continues to move forward, refusing to drop dead. In the end they always die but that’s not the part I want to relate with.
I’ve enjoyed the time spent at home and not in the hospital. This is the longest stretch, since July 2011, of staying out of it. The last couple days of 2012, about 2 months ago, was the last. I knew things weren’t right and Bobbi convinced me to have it checked out. Thank god no Cath procedure! A nuclear imaging test showed minor closure at the bottom of the LAD again. Two past angioplasties in the area provided only temporary relief. At first, the pain hit me like a train. Each breath brought a sharp and piercing awareness that only bags of nitroglycerin took a way. Narcotics did little after 30 minutes. It was a frustrating couple of days. I spent hours with the lights off in my room. Looking out of the window, into the dark night, my thoughts a million miles away. I was tired and fed up with everything. It was not how I wanted to welcome in the New Year.
There is no magic pill or pixie dust that’ll change anything concretely. The right diet, and exercise, is still the key.
The hospital has a program where certain staffs are recognized, by a patient, as a ‘hero’. There was no way we could thank all of the nurse’s who’ve made a difference on the heart unit. Have chased a few doctors out of the room, but never had one issue with the nurses go wrong. All of them made a difference. Over twenty hospitalizations, in as many months, is a lot of trips. Instead of nominating just one Bobbi and I decided to donate to the floor some professional photography prints (Shots of a sunset taken in the midst of the worst of times). It felt good to give back and show that what they do each day really matters. They were present during some of my worst days on earth. Cheerful, compassionate, and caring every single time.
I’d say things are going well and smooth. It’s hard to get ‘out of the head’ the many hallways of thoughts the mind wants to go at times. Some are good because it brings awareness to the important things in life, but others are full of the ‘what if’s’. That’s no good. It’s important to keep your mind, heart, and soul, ready for whatever happens. Mankind can only do so much… when it’s your time it’s un-debatable and uncompromising.
Looking forward to spring and the sights and sounds the next season will soon bring. Life is good.
November 1, 2013
Ten months have passed. A lot has taken place during this time. In early April decided to tackle a 2-month regiment of daily EECP treatments at the hospital. Figured it couldn’t hurt. It started out as a real challenge. Large leg, thigh, and waist cuffs, fill with air with every heart beat and then release it until the next. For sure, some real discouraging days. At the end of the sessions I was glad to have completed it. I wasn’t taking quite so many nitro pills or using 24-hour patches. The spring and summer months Bobbi and I enjoyed home projects and spending a great deal of time outdoors. The camera captured some amazing shots.
Life is pretty good right now. Pain is still a daily issue, during some time of it, but everything is manageable. I think I push things to hard because I believe deep down it’s the way to live. We’re only as limited as we think we are. It frustrates Bobbi at times but I know she understands, and it’s probably what’s keeping me alive. It’s been refreshing not having the word ‘heart’ dominate so many conversations. Bobbi and I managed to take a nice two-week vacation traveling to an island off the coast of Upper Michigan. Only two nights there, but Bobbi had a chance to visit with her family and I’ve always enjoyed that. Each year, since the surgery, there is a lighthouse we travel to along Lake Michigan. It’s the same spot our trip was made short 2-years ago. Now it feels much like a victory spot.
May of 2014
Bobbi and I flew to Baltimore to visit Shay. It was a perfect trip. Stayed in a nice hotel on the Harbor and she showed us where she worked and went to school. She then drove us to see the National Mall in Washington D.C. A lot of walking but I was determined to walk up the steps of the Lincoln Memorial. I was soaked in sweat when reaching the top. The same sweat others felt when fighting for their causes. It meant a lot. The only real speed bump in the way was on our flight home. Another passenger was being too loud and annoying. I tried to deal with it the best I could, asking him politely to keep it down. But that lasted about two seconds. His response that he could give a damn brought out my sometimes worse side in being brutally honest at the worst times. I then told him we’d talk about it when the plane landed. The last thing I wanted was to get booted off the flight.
This morning I dropped Aiden off at school because he slept over last night. His bedtime was at 8:00, after reading to us for about 30 minutes. He is an amazingly smart seven year old. The story was about a king whose city was becoming polluted and how three people in the kingdom helped by recycling and using containers for different things instead of throwing them out. He then explained how the Gulf of Mexico had a huge oil spill, because our cars needed it, and it killing so many animals and fish. It really affected him, showing in the sound of his voice and expressions. He also knew about the cleanup efforts but didn’t like their using chemicals in the water to do it.
This morning, while Bobbi and I started the day at about 4:30am, we heard the little pitter patter of feet upstairs. They were headed our way. He was in a great mood, already laughing about something within minutes. He is so easy to get along with. At 6:00 we drove Bobbi to work and stopped and got donuts for breakfast: still talking and laughing. When we arrived at his school, which began at 8:15, he wondered where everyone was on such a beautiful day. Asked if he could do this more often and jumped out and ran off to the playground.
January 1st, 2016
Finally! Life’s taken on a new normal. Looking back at the last 4 and half years. I’d have to say it was a heck of a fight for a while. There have been a couple overnight stays at the hospital but out the next day. I still tend to push things and refuse to give up on a challenge. That can be my worst enemy. Journaling this has been a good thing. I know there must be a zillion grammar errors! If it helps one person with their struggle, because we all have a mountain to climb, it’ll be worth it on that end too.
Bobbi and I’ve opened a little glass shop, making custom design stain glass panels. It feels good to be involved in something. Not the best profession for a person on blood thinners, but why stop pushing the envelope now. Bobbi’s Mother is a stain glass master, having spent her life making and designing pieces, and got us up and running with it. Have enjoyed teaching Cinneidi and Aiden the craft. Each made their own custom lighthouse panels for their mom Jen for last Christmas. I’ll close these writing’s in a simple way. Thank you for taking the time reading this and live each day like it’s your last. Life’s going to throw all of us some crazy pitches. Step into them and swing away!
June 2016 -We sold our home, Bobbi’s retired and we’ve moved to Upper Michigan. Life continue to change, Twisties cells we’re lining up.
Little did we know of the new battle on our horizon. Cancer.