Monday, August 16, 2010

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.

4 comments:

Unknown said...

Thanks for sharing your story with us Mike.

Mike S.

Michael said...

Mike - it provides me with a spot to keep friends and family informed. I get all sorts of questions from concerned people and this provides a good forum for responding. I also hope that some day this blog will be an inspiration for other people suffering with MDS. People like me need to understand what the road is like. One of the hardest things is the unknown. What is it like to have a bone marrow sample taken? What does my diagnosis mean? What are my treatment options? What are the first 100 days like after the transplant? What is the likelihood that I will find a bone marrow donor that is a good match? What happens if I can't find an good match? What does it mean to "fight" the disease?

Take care brother. Say hi to Michelle and tell her that before our next fantasy draft I expect her to go through sensitivity training. Ha!

Patrick Shamblin said...

Hey Michael, thanks for sharing this.

For a bone marrow donor, do you have to be the same blood type?

Michael said...

Hey Patrick,

You do not have to be the same blood type, but you do have to be a genetic match. There are certain genetic characteristics that need to match.

My hope is to actually get friends, family, church members, and community folks involved in a drive to get people on the national registry.

I may not be able to do anything for myself, but I really want to help others that have similar diseases.

Thanks so much for dropping in brother.