My Journey Through a Health Crisis (4)

The Roller Coaster Ride

Two weeks ago, testing kits were sent to my brothers and sister to find out if any of them would be a good match for the stem cell transplant. Once they received their kits, they wasted no time getting tested and overnighting the kits back to Denver.

Testing can return preliminary results in as little as three days. What you find out is not whether you have matched anyone, but whether anyone has been eliminated. Apparently they test for six specific characteristics and you want to see a match on all six of them. All of us waited anxiously for news.

Last week Monday (8/26) was a long day. I started my chemotherapy, had blood drawn, and worked a full day. Early that evening we were winding down when the phone rang; it was Pat, a specialist assigned to guide me through the transplant process. We had been anxiously awaiting her call with the test results for my siblings. As it was explained to me, each of my siblings had a 1 in 4 chance of matching. If I understand statistics, that should mean that I have a 75% chance of matching one of them (1/4 + 1/4 + 1/4 = 3/4).

As soon as we knew it was Pat calling, Lisa and I quickly moved into our office, shut the door, and put the phone on speaker. I think my heart started to beat faster and harder as I listened to Pat. Pat gave us unexpected news -- none of my siblings were a match. In fact, my brother Steve was the closest match and he only matched 4 of the 6 criteria. Further, Pat explained that none of us would be a good match for any of the others. I immediately got very quiet as my wife began to ask a series of questions she had written down.

I don't really know how to explain my emotions at the time. In a way I guess I felt a sense of doom. During the last several weeks the majority of the news I heard was negative. Before hearing about the test results, I was hopeful that one of my siblings would be a good match --after all, the odds certainly seemed in my favor. When I heard that none of them matched, I began to wonder if the end result was a foregone conclusion. Luckily, the conversation with Pat was not all bad news.

There are multiple ways of getting bone marrow stem cells. You can get them from a relative, from the umbilical cords of new born babies, or from a donor on the national registry. Pat was good enough to search the list for potential matches prior to calling. She informed us that she had found several candidates and would begin the process of identifying a donor.

After getting off the phone with Pat, I called my parents. As we talked, my mother called my sister Shiela who subsequently called my brothers Steve and Bob. Everyone in the family took the news very hard.

My brother Steve and I exchanged emails the next day. I told Steve that I felt like God was pushing me inch by inch closer to a precipice and as he did he was asking me, "Do you trust me?" My answer, "Yes Lord, I do."

I haven't always been able to express to people the internal state that I am striving for. A young woman I know posted a facebook status that referenced lyrics from a song I really like. The song is called, While I'm Waiting, by John Waller. The song took on entirely new meaning in my current context.

Here is a link to the song if you would like to understand my inner world a little better.

http://www.youtube.com/watch?v=u3b2jw1rjBc&feature=related

I have so much more I want to write, however, I felt like I needed to update all of you who have been waiting for news.

My Journey Through a Health Crisis (3)

Chronology

October 24, 2009 - competed in the Colorado Natural Bodybuilding Championships. My 2009 preparation for the show went well but things seemed a bit off.

January 2010 - in the latter part of the month, I recall really struggling to do cardio that normally would not have been difficult.

March 2010 - struggling to handle spinning class, problems with shortness of breath and lightheadedness during intense weight training

June 19-30 2010 - during the Maui trip I felt lethargic and often lightheaded. I also became intolerant to cold, susceptible to illness, and irritable.

July 1-2 2010 - feeling much better than I felt on our trip to Maui. I am speculating that the environment in Maui was challenging my immune system.

July 12, 2010 - my brother-in-law was admitted into the hospital due to heart attack symptoms. The doctors confirmed that he did indeed have a heart attack and other health issues requiring immediate attention. That event convinced me that it was time to see a doctor myself.

July 15, 2010 - initial visit to family doctor. My doctor found signs of anemia and ordered extensive blood tests.

July 16, 2010 - paid a visit to Quest Diagnostics after an all night fast. I think they took somewhere between 8-10 vials of blood.

July 17, 2010 - I worked out hard in the morning and the got ready to see a movie with Jordan. I showered, took off a CIY wrist band and put on my LiveStrong wrist band. Within two minutes a doctor associated with the lab called and told me I had a very concerning blood test. He asked me how I was feeling, if I felt feverish, or if I had been having problems with bleeding. I replied that I had not. He said that I should rest over the weekend and go to the emergency room if I had any unusual symptoms. He also mentioned that my red blood cell, white blood cell, and platelet counts were all very low.

July 19, 2010 - I got a phone call from my doctor and he explained the possibilities. Most of the possibilities were very frightening. He arranged an appointment with an oncologist immediately.

July 20, 2010 - met with an oncologist, had 10-12 more vials of blood taken, and a bone marrow sample taken. The diagnosis is beginning to look like aplastic anemia, myelodysplastic syndrome, and various forms of leukemia including acute myeloid leukemia; each of these represents a significant risk to my life and will more than likely requires a bone marrow transplant.

July 22, 2010 - probably one of the most miserable days of my life. My doctor told me he would call as soon as he got information regarding my bone marrow test. He didn't call so all sorts of things went through my mind. I wondered if he had really bad news that he needed to tell me face to face. I had spent quite a bit of time researching things and that only made matters worse. I never received a call. I was deeply troubled, very sad, and afraid. I read Psalm 20 several times and prayed. The next day I spoke to a good friend named Andy. Andy listened to what I had to say about the experience. He came back later and said, it reminds me of what Jesus experienced in the Garden of Gethsemane.

‎"Father, if you are willing, take this cup from me; yet not my will, but yours be done." An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.

I remember thinking those same thoughts. God if there is any other way, please take this from me. If not, please give me the strength to endure whatever comes in a manner that honors you and is an example of how one ought to endure difficult trials.

July 23, 2010 -my oncologist tells me that all indications are that I have myelodysplastic syndrome. He educated me on the disease and talked about how we would know how advanced the disease was and how it is categorized. He also talked to me about an article he read in the New Yorker. The article was about people with terminal illnesses that continue treatment when there is no hope. I wasn't exactly clear what message he was trying to send me. I decided that he must have been trying to help me understand the possibilities and prepare myself and my family for the worst case scenarios. I had blood drawn and it was determined that I was severely anemic and required a blood transfusion. My hemoglobin measurement was 6.5 where a normal male my age would have a value between 14 and 18. I was sent to the hospital for typing.

July 24, 2010 - I spent 5 hours in a hospital getting the first blood transfusion of my life. It is my son's birthday and I am really missing being with him. He bought me an excellent book to read and got me some dark chocolate raisinettes to eat. During the 5 hour procedure I read, slept, wrote in my journal, conversed with the nursing staff, and reflected. I recall looking up at the pouch of B- blood dripping into my IV. I was so incredibly thankful for the person who was willing to donate blood to help people like me. I was also convinced that I had to do something to help people suffering from diseases like MDS and Leukemia. I began thinking that I would love to arrange a drive to get people to give blood and be marrow donors on the national registry. I also had a daydream. In my daydream I envisioned myself alone standing in front of an enormous dragon. In my dream I knew I had no hope of winning. I also knew that this wasn't the whole story. My daydream continued and legions of people joined me. Among them were family members, friends, doctors, nurses, anonymous donors, and God. I had an army and with that army I knew I could win the fight. Maybe this sounds odd, but contemplating this brought tears to my eyes. At times throughout the day nurses checked on me and talked with me. By the end of the day I felt like I had made two friends. Both of the nurses said that they would be happy to donate marrow if I needed it.

You know there are times when I wonder, 'where are the good people in this world?' Now I know that they are all around me.

July 29, 2010 - my oncologist calls and leaves a message confirming the diagnosis of myelodysplastic syndrome based on genetics results. He tells me to expect a call from another doctor who specializes in bone marrow transplants. We didn't receive any other calls that day.

July 30, 2010 - my oncologist discusses the disease and explains the likely treatment. I have more blood drawn and the results indicate that I do not need another blood transfusion (hemoglobin at 8.8). I do not receive a phone call from the bone marrow transplant doctors office so I call them myself. No appointment scheduled.

August 2, 2010 - I do not hear about an appointment so I call my oncologist's office. They do what they can to move the process along. Late in the day I finally get a call but I am not scheduled for an appointment.

August 3, 2010 -I finally received a call and an appointment is made for August 11th. You may be reading this and asking, 'why are you telling me all this detail about arranging an appointment with the transplant doctor?' Well it is very simple. The disease I have, myelodysplastic syndrome, can develop into a dangerous form of leukemia known as acute myeloid leukemia. My desire is to move quickly and stay ahead of the disease. The other thing that I want to communicate is the importance of doctors, nurses and staff doing what they say they are going to do. Overall I have been very happy with the care I have received. However, the moments I have suffered the most have correlated to unmet expectations.

August 11, 2010 - I had a three hour appointment with the bone marrow specialist. I was very impressed with the doctor and his staff. I was thoroughly briefed on the disease, treatment, schedule, and the resources available to me and my family. We came to the appointment equipped with the necessary information to send test kits to my siblings -- we didn't want any further delay in getting a donor identified. The test kit essentially is a set of instructions and three vials containing heparin for blood samples.

We also learned that the donor DOES NOT have to have bone marrow taken from their hip. Instead, the donor is given shots that produce the necessary stem cells in abundant quantity. After four days (the donor can continue to work), they can take blood, remove the stem cells, and give them to me intravenously. That sure sounds better to me.

I also understood that they will begin a search for a match on the national bone marrow donor registry as soon as possible.

Last but not least, I was told that I will begin chemotherapy immediately. The chemotherapy drug that I will be given has virtually no side affects in most patients. The product is called Vidaza. Here is an article that explains this drug.

http://www.medicalnewstoday.com/articles/139483.php

August 20, 2010 - I saw my oncologist today and we discussed beginning chemotherapy next week. He would like for me to come in for 7 straight days and receive shots. He prescribed some medicine to help me manage nausea because nausea is a known side effect of Vidaza. Another member of his staff discussed the drug in more detail. She said that most people handle the drug very well. The down side of Vidaza is that initially my blood counts will drop and then hopefully rebound. Given that my counts are already very low, that can be a significant issue. We will have to be very diligent about keeping the house clean and avoiding contact with sick people.

[this post will be updated]

My Journey Through a Health Crisis (2)

Warning Signs in Maui

First Day on Maui

For two years we saved our pennies for Jordan's graduation trip. We wanted the trip to be a special time to enjoy one another and create memories. This trip was very important to me because of something I've learned during my forty-six years. When I graduated from high school my life changed rapidly. I always thought there would be lots of family time ahead; unfortunately that did not happen. As is often the case, new jobs, young families, economics, and distance make it difficult to see everyone as frequently as you would like.

With that in mind, I wanted to make sure our family took advantage of the opportunity to be together in a place that we all loved. I remember thinking that you just don't know what circumstances life will bring, so you take advantage of moments you do have.

During our trip to Hawaii my health seemed to take a turn for the worse. There was nothing in particular that was dramatic, but there were more signs that something was wrong. For example, on the day of our departure I had symptoms that came on quickly and then just as quickly, disappeared. We had made it to the airport, checked our baggage, and arrived at our concourse. Normally, this is the point where I begin to relax and enjoy my travel experience. Instead, I began feeling weak, mildly feverish, and slightly queasy. We stopped at a bakery and got something to eat and within an hour I felt normal again.

Later that day when we arrived at our hotel, I found out that Starbucks coffee, baked goods and fruit were sold on the second floor near the lobby. When I got up the next morning, the first thing on my agenda was to get a newspaper, a cup of coffee, and enjoy some quiet time. As I made my way up a stairway from the first floor to the second my head began to pound and I felt short of breath. Here I was at sea level, an altitude one mile lower than what I am accustomed to, and I am struggling to go up one flight of stairs.

Later that morning all of us went on a quick shopping trip. Eating out in Hawaii is very expensive so we decided to go to a local Safeway and pick up food for snacks, breakfasts, and lunches. We also determined that renting snorkeling equipment was far more expensive than buying a couple sets. So, we hoped to find some reasonably priced gear.

After we picked up everything we needed, we headed back to the hotel. I dropped off Lisa and the kids near the lobby, and they carried the majority of the groceries to our room. I parked the car and then grabbed as much of the remaining groceries as I could. I took a twelve pack of water and two twelve packs of soft drinks. The walk from the parking garage to our room was quite long. To further complicate things, I didn't know exactly where I was going. As I carried my load out of the parking garage, into the hotel, down corridors and up a flight of stairs, the same symptoms I had experienced in the morning returned. About one-half of the distance from the parking garage to our room I had to stop. I rested my load on a railing and stood around for a couple minutes huffing and puffing and staring out at the ocean. Bouncing around in my head were completely disjoint thoughts; 'what is wrong with me' and 'I can't wait to get to the beach.'

We spent some time at the pool and the beach that first day and really enjoyed ourselves. We decided ahead of time not to spend too much time in the sun to avoid getting sunburns. There is nothing worse than wanting to enjoy the ocean and yet not being able to because of a nasty sunburn. So the kids thought that a movie would be a great solution. We drove down the coast a few miles to Lahaina. Once we arrived we purchased our movie tickets and explored the area. After a couple hours, we made our way back to the theater feeling very hot and looking forward to an air conditioned environment.

After only a few minutes in the theater I became uncomfortably cold. By the time the movie was over, some two and half hours later, I was completely miserable. I left the theater in a hurry and couldn't wait to get back out into the hot summer weather. For the rest of the evening I couldn't seem to warm up. At dinner I had to sit in direct sunlight (we had a table overlooking the ocean). After dinner I sat in the car with the heater on while Lisa and the kids shopped. When we returned to our room, I quickly got into bed and covered up. I was still feeling chilled but had an obvious fever. I fell asleep immediately and didn't wake up until late that night. When I did, my pillow was soaking with sweat.


The next event was the most subtle.  Jordan and I had planned from the beginning of the trip to go snorkeling. Jordan and Lisa spoke to our concierge and a particular tour came highly recommended. Our trip took us to the Island of Lanai and was scheduled to have several good stops for snorkeling. Not long after we left the harbor, it became clear that the seas were much higher than normal. As a result, the crew had to find protected coves suitable for our group. On our first stop Jordan and I were very excited to get in the water. When we did it was like being back in that the movie theater. I was cold and my body wasn't acclimating very well. I didn't think much of it. Much like the day at the movie theater I just decided I needed to tough it out. I did not want to ruin the trip for Jordan. After 30 minutes in the water, I was happy to see that Jordan was ready for a break. We got back on the boat, dried off and had something to eat and drink. I couldn't believe what I was thinking.  All I could think was, 'I can't wait until this trip is over.'

Snorkeling Trip With Jordan

After everyone was back on board, we traveled to our next stop. We had something to eat and then the captain called us to the back of the boat. He explained that there was a lava tube connecting the body of water we were in with another on the other side of this arm of lava extending from the shore. It wasn't that deep, nor was it that hard to navigate but you had to know where you were going. Jordan and I were near the back of the group so I could only hear fragments of what the captain was saying. The one thing I did pick up was this. The captain said, 'Know your limits. If you are uncomfortable don't bother with the lava tube.'

I'm a good swimmer and I love being underwater. Even in my bad condition, I can swim 20-25 meters underwater on a single breath. I don't know how to put this other than to say alarms were going off in my head. I believe that our bodies have ways of communicating danger to us. Somehow I feel that my subconscious was passing on a message. Something is wrong. Be careful. You are playing with fire. I took the captain's advice and decided that lava tube was not for me.

Now that I have a diagnosis and understand the symptoms of my disease, everything fits together.

My Journey Through a Health Crisis (1)

A Few Days After Competition

In late January of 2010 I noticed something just didn't seem right. I had competed in the Colorado Natural Bodybuilding Championships in October of 2009 and had done well. I had finally moved up into the light -heavyweight category and ended up placing 3rd in the Open division. It must have been a year for thirds because I placed 3rd in my Masters category and 3rd in the Drug Free for Life Category.

After dieting hard for months, I have never found it easy to stick to a strict diet. Normally that means I do fairly well during the week, and cut loose during the weekend. After two months of that, January came around and so did the extra body fat. I probably went from 6% to 16% body fat during that time. January normally is the time that I begin to work on my conditioning and strength. I work very hard in the gym to put on muscle and focus on eating "clean". Part of my conditioning program involves cardiovascular training. One of my favorite pieces of equipment for cardio is the Cybex Elliptical Trainer.

I remember getting on that machine and setting it up for a nice warm-up. After the warm-up, I increase the resistance and the incline. This particular machine has an incline that ranges 1-10 and resistance ranging from 1-100. Normally I start with the resistance on 25 and the incline on 5. For me that should be nice and easy. I do not recall what day it was, but I do recall how I felt. I had just completed my weight training and I was tired. When I started my cardio, using seemingly easy settings, something just wasn't right. I felt increasingly uncomfortable and then short of breath. I couldn't believe it. I don't think I lasted more than 5 or 10 minutes before I had to get off the machine with my tail between my legs. I was embarrassed. I remember hoping that nobody saw my pathetic effort.

I think I began rationalizing what had happened and had many different angles. My first thought was that I was just having one of those days. When you train hard week after week, your body doesn't always perform at 100%. I also wondered if the added body fat and lack of cardiovascular training had taken a toll on my conditioning. In recent years I noticed that to some degree. The winter months usually included big strength gains and an assortment of minor injuries. It also included a drop off in my cardiovascular fitness, but nothing significant. I wasn't very concerned, but what had just happened certainly got my attention.

March/April 2010

Over the weeks and months to follow, I continued to work on my diet and add cardiovascular training. I think I saw minor improvements but nothing like what I expected. I remember one day thinking, 'I must improve my cardiovascular fitness.' I decided to put on some shorts, and go for a jog. I have multiple paths in my neighborhood. One path is just over a mile. Another path is one and a half miles. The path I rarely take is three miles and has a killer hill. As I left I decided on the moderate lengthened path. At first I felt fairly good. The road out of my neighborhood is downhill for the first half mile. Then the path is relatively level. Eventually there are some minor hills to negotiate but nothing at all that should be difficult. The first half mile went fairly well. I did notice that I was slightly uncomfortable but decided it was simply because I hadn't been running in months. As the path leveled out, I began to suffer. I remember suffering just to make it to the next corner only a quarter of a mile away. I was almost pleased that there was traffic blocking my way so I could recover. The traffic cleared and my determination rekindled. After running about 100 yards up a slight incline strange things began to happen. My legs began to cramp, I started losing coordination, and my left ankle rolled. 'What in the world is going on?', I thought. I wasn't ready to quit though. For the remainder of my trip, I ran 100 yards and walked as long as it took to recover before running again.

I told some friends and a trainer what was going on. I don't think anyone thought anything of it. My next stop was a one hour spinning class. The spinning instructor loves when guys like me come into her class. There are a group of guys at my gym that love to train very hard with weights. We move at a good pace and push ourselves to the limit. Each of us have made excellent gains in strength and size. I was in many ways the leader of the gang. I put together the workout plans, trained multiple people for bodybuilding shows, outlined diets, and tried my best to lead the way in terms of effort and intensity. Jeanie the cycling instructor loves to put the beloved muscle heads in their place. My friend Quinn and I entered the cycling room knowing what was about to happen. Sure enough, Jeanie gave us all we could handle. I watched the clock and suffered through every minute. My pride was the only thing that kept me in that room and I could only endure 30 minutes. Other friends of mine who were regulars in the class tried to encourage me to stay for the rest of the class. I knew I couldn't do it. I simply did not have the strength left. I was shocked.

Over the coming weeks I returned to the class in hopes that I would improve. Jeanie knew I was struggling and lightened up a little on me. It didn't matter. At 30 minutes, I simply could not continue. Not only that, but I couldn't do what she asked the class to do. If she asked us to increase tension, I couldn't do much. If she asked us to increase RPMs I couldn't do much. If she wanted us to do "jumps" for the duration of a song I couldn't keep with it. Nothing was improving despite all my efforts.

Celebrating Graduation - May 2010

May/June 2010

I began to believe that I must have heart disease. All of the machines warn against doing an exercise when you are short of breath and dizzy. On almost every work set I did with weights, I felt short of breath and dizzy. One day really stand outs. We were doing legs and leg training always means suffering.  My buddy Quinn offered an alternative saying, "Why don't we drop the weight today, put 135 lbs on the barbell and do 30 rep sets of deep squats." After 10 reps we change our foot position; close, medium, and then wide. I made it through 20 deeps repetitions and I was done. I racked the weight in desperation and proceeded to lean against a rail as my heart raced and my head spun. 'Something is definitely wrong', I thought.

At that point I decided something had to be done. When I returned from our summer vacation, I would see my family doctor and get back on the road to health. Little did I know that there was a monster growing inside of me.