Tom Clarke
In early July of 2007, after a normal day at work, I began noticing that I seemed to be more tired at the end of the day than usual. I didn't think much about it because I had been putting in a lot of hours and figured that was probably the reason. As the week progressed, the fatigue began to increase and I was beginning to feel weak as well.  On Friday, July 6, 2007 I got home from work and started upstairs to my room but by the time I reached the top of the stairs, I was completely out of breath. I called my daughter Ashli, who was in nursing school at the time, and told her what was happening. She was a little concerned so she came to the house to observe me. It didn't take long for her to figure out
that something was wrong and that I needed to see a doctor ASAP. The next morning I went to an urgent care facility to get some tests done. After x-rays and a visit from the doctor, he came to the conclusion that it was pneumonia and prescribed some medications.

The following Monday I was feeling even worse and made an appointment with my GP to get her opinion. She agreed somewhat with the urgent care's assesment but suggested that I pay close attention to see if I felt any better. On Friday morning I felt even worse so I called my doctor again. She had me come to her office and took some blood samples. She sent me home and said she would call me with the results. At 2pm on Friday, July 13, my doctor called me back and told me to pack some clothes and head to the hospital immediately.  She wouldn't tell me why, just get here fast.  I packed my things and headed out. When I arrived, they already had a room waiting for me. After changing into one of those fancy hospital gowns, I sat and waited with my daughter for some specialist to arrive and when he did, my world changed forever.

LEUKEMIA he said, and my heart just sunk. I'd heard of it but had no idea what it was or what it could do to you. I looked at my daughter and the tears started flowing. My first question to the doctor was "am I going to die?" and he did very little to raise my hopes. He left the room and there I was, face to face with my daughter and trying to reassure her and myself that it was going to be ok. I failed miserably.

The very next day I began chemotherapy and remained in the hospital for a month. There was very little discomfort but I remember being terribly bored. After my 30 days there I headed home. I returned to the oncologist's office for weekly blood tests and consultation and I was feeling pretty good. That continued until January of 2008. The leukemia had returned and I was told that I needed a bone marrow transplant in order to survive. Since the hospital I was treated at didn't do transplants, I was sent to the University of Nebraska Hospital for a day of testing. While I was there they informed me that I would need someone to come stay with me for 100 days while I was undergoing treatment.  Since that wasn't even remotely possible, I begged my insurance company to find a closer location. They gave me some sort of special exemption and I was allowed to have my transplant at the University of Kansas Medical Center.  A location that was only 20 minutes from my home, victory! 

The attempt to find a donor was going at a snails pace. I resumed outpatient chemotherapy while I waited for a match to be found.  Finally, in September of 2008 a donor was found. A male from Europe was all I was told. The doctors began preparing for the procedure and then came to a screaching halt. I had come down with a cold and the transplant couldn't be started if I was sick. Since there was only a 2 week window for my donor to contribute, I began to worry, a lot. Finally, on October 1, 2008, I received my marrow transplant. It was the absolute most terrible procedure I've ever experienced. My entire body was shaking, I was sweating, freezing and vomiting all at the same time. I don't remember anything from that day until 2 or 3 days later. At that point I remember trying to get out of bed to use the restroom and fell right on my face. I had no idea that I was that weak. I yelled for a nurse and one finally came but that was the end of my freedom for the next couple weeks. They put an aide in my room 24/7 and set an alarm on my bed so that I couldn't get out of it. I had to be the absolute worst patient ever. I bitched and moaned about everything.

Finally, after 40+ days, I was allowed to go home.  I was so sick and so weak that I couldn't do anything for myself. My daughter and son in law were my caregivers and they were awesome. I put them through hell but they hung in there. God blessed me with an incredible family. After several months of daily trips to the doctors office and recouperating at their home, I was feeling pretty good. I had regained some strength, I was exercising daily and life was pretty good.

In late June of 2008 things were pretty much back to normal. I had pep in my step and a song in my heart, life was good. Then it happened. I went for a routine visit to my oncologists office and he decided it was time to take me off the evil steroid, prednisone. I remember coming home and my son in law commenting about all the energy I had and that I looked so much better than I had in months. That was on a Thursday afternoon. By Saturday evening I couldn't walk, couldn't breathe and I was in shock. It turned out that prednisone has to be tapered out of your system and it takes months to achieve zero milligrams per day. The doctor had taken me off of it cold turkey and my body was beginning to shut down. I was in very serious condition. An ambulance was called and I don't remember anything until I woke up in the ICU. I spent almost 3 weeks in ICU before being sent down to the bone marrow transplant wing. I was still unable to walk and I was on 25 liters of oxygen 24/7 for several days.

On July 21, 2009, my oldest daughter's birthday, I received the news that no one ever wants to hear. I was told by my Oncologist, Cardiologist and Pulmonologist that I only had a week to live and I wouldn't be leaving the hospital. I called my family and friends and started preparing to die. I don't remember much until early the next week. The doctors just stopped talking about death, like they were ignoring it. Finally, I started pushing myself to get out of bed and kidnaped  a nurse to help me try to walk. I had to use a walker and pull a tank of oxygen and I was only able to take a few steps before sitting down but I was on my feet!  The next few days were a real challenge. I spent hours trying to walk farther and farther. Finally, after a week or so, I made it from one end of the hall to the other, a huge victory for me.

July 28,2009 is a day I'll never forget. My Oncologist stopped in my room and told me that for some crazy reason, which he couldn't explain, my condition was beginning to improve a tiny bit but there was no mention of a change in my prognosis. On July 30th, my Oncologist came in with some news that totally freaked me out. He said that there was a chance that my death was not imminent but that if I survived, I'd be on oxygen for the remainder of my life and would have to have assistance walking. On July 31st, I was released from the hospital and headed home.

When I returned home, I weighed 105 pounds less than when I left. I was so sick that I had to be carried upstairs to my room and I was pretty much confined there for weeks. After I started feeling stronger I began pushing myself to exercise again but at a much slower pace than I ever had before. I was still on oxygen and using a walker at this point but I had convinced myself that it was just temporary despite what my doctors had said. In just a few short weeks, I had reduced my oxygen intake to 5 liters and only needed a cane to walk. Things were beginning to look up.

In the Fall of 2009 I reached my first milestone. I was able to stop the oxygen and I was walking a little without any assistance. I kept pushing myself harder and harder trying to get to a point where I could throw away the cane for good and I finally did it by the end of September.  On the first Friday of October, I was able to walk in The Leukemia and Lymphoma Society Light the Night Walk for blood cancer survivors and caregivers. With the assistance of some great friends and a backpack full of oxygen, I was able to walk 1.5 of the 2 mile course. I was extatic.

In the Spring of 2010, I was completely free of oxygen and needed no assistance to walk. I began walking on the high school track nearby for a few weeks and then eventually was able to start walking on the streets. By the end of 2010, I was walking 3 miles per day and feeling on top of the world. 

In early 2011, I turned it up a notch. With the support of the girls at the LLS office, I started raising money by walking for pennies. I raised funds for the LLS by getting people to sponsor me for 1 penny per mile that I walked that Summer. I had a goal in mind of 1000 miles by the end of September so I could collect $10 each from all my sponsors. All my friends and family thought I was nuts and there was no way I could walk that far. I almost proved them wrong. In late September, I broke my hip from all the walking. The doctors said the bone fragments looked like sand and there was no way I should have been able to walk as far as I did. When it happened, I was walking 10 miles per day and made it to 923 miles before my hip gave out. Short of my goal but a huge victory anyway.  For someone who was supposed to die, never be able to walk without help and would require oxygen for the rest of my life, I think I did ok.

The past couple of years have been somewhat trying. A few bouts of pneumonia, some lung issues, major weight gain due to the steroids and gall bladder surgery to top it off. I may be down but I'm not out yet. I plan to be walking long distances again by the end of the year and look forward to hitting my 1000 mile goal in 2014.

That's a little about me and it's why I work year round to raise money for cancer research. God gave me a second and third chance at life and there's no way I'm going to screw it up. Donate to the LLS and help people like me get the medical assistance we need to survive.

Thank You,

Tom Clarke