Never Give Up Hope

Part I: It Came From Nowhere

2004 began as a tough year. John, my fishing-buddy was diagnosed with a severe type of brain Cancer in February. I was devastated to learn that he was not expected to survive. It wasn’t fair. He was just finishing work on his beautiful new lake home in Wisconsin. I was able to visit him at the lake for the fishing opener in May. We talked about his brain cancer quite a bit. He showed me his chemo and spoke about feeling tired much of the time. Looking at him, he seemed just fine, but I could tell he needed more rest than he had before.

At the same time, my mother was just beginning her second year in a nursing home with dementia. Her short-term memory had been slipping for quite a while. She could recognize us and have a conversation, but she would forget where she was and spent much of the time confused. In March she had a bad fall and ended-up at the hospital with broken bones in her leg and hip. She was back in the nursing home after a short time, but passed away just a few days before her 84th birthday. During her eulogy, I spoke of the love she had for her family and how tough it was to see her struggle. At that time, I had no idea that I would soon face my own memory problems.

I was working in the training department for the same company as my friend John. I had been there for about seven years. Most of the time, I enjoyed the job and got to travel throughout the entire country. Then our department became “right-sized”, which meant the staff was cut in half and the workload and stress level doubled. I was pretty busy at home too. I had started work on a new tool shed in June and looked forward to a Wyoming vacation in late July.

It was while I was working on the shed that I started to feel a strange sensation in my right arm. It was hard to describe. I couldn’t seem to hammer straight and I was bending a lot of nails. I nearly had the shed framed-up when I was wondering if I had developed carpal-tunnel syndrome. I figured that my vacation was coming just in time and my arm would be fine after some rest. We flew from home in Minnesota out to Jackson Hole, Wyoming and Yellowstone. It has been my favorite place, since I was young. My wife Claudia, my daughter Katie and son Jamie had all grown to love the area. My dad took his vacation at the same time, so we did a lot of things together during the trip. When we got home, the kids said it was their best vacation ever.

Fully rested and back to work, I quickly noticed that my typing and handwriting were becoming difficult. I had tough time writing on the flip chart during my seminars. I had to resort to an old trainer’s trick of choosing a “volunteer” to write on the chart for me. However I sensed there was something more seriously wrong.

I left work one morning and drove to my local clinic to talk to a doctor about the issues with my right arm. He had me move my fingers and so on. He couldn’t tell me what was wrong, but had some blood drawn and made an appointment for a CT scan at another clinic ten miles away. He wanted to make sure there was nothing wrong with my brain. I called work to tell them that I may be gone for a couple hours. I really didn’t expect any problem.

When the scan was completed, the nurse led me to a waiting room and told me that the doctor would call me there. After about five minutes, she returned and announced that the radiologist had told her not to let me drive home. Now I was scared. I called work and told them what was going on. I knew that Claudia had our daughter out for her driver’s test, so I left a message for them. The phone in my waiting room rang shortly after I hung-up. The doctor was speaking to me and asked if I were sitting down. He said I had a growth in my brain. He didn’t know what it was, but he was going to set me up to see a neurosurgeon the next day. When I asked about driving home, he told me I could drive since I had been driving on my vacation. However he also said that I shouldn’t let anybody know that he told me that.

I think a lot of people would have panicked or gone into some kind of mild shock. I heard a little voice inside me say that this is my destiny. I wasn’t sure what that meant, but for some reason I stayed calm and drove home to tell my wife the news. When I arrived home, she came out the front door to ask me what was wrong. At that point, I hugged her, began sobbing and told her that there was a growth in my brain. I kept saying that I was sorry. It was starting to dawn on me that our lives were about to change.

Claudia and I showed up at the hospital the next afternoon to meet the neurosurgeon. He seemed like a NICE guy and had my scans on his computer. On my images, there was a blob about an inch in diameter on the left side of my brain. He started to explain what he thought it could be. He named about a half-dozen types of tumors and I had never heard of before. Then he added that it could also be Glioblastoma Multiforme. He admitted that it’s a long ugly name for an ugly type of Tumor and that most patients only survive for six to twelve months. He said that it is the one I definitely don’t want. He added that he wasn’t sure what it was, but knew that needed to come out. We scheduled surgery for the following week. I was placed on anti- Seizure medication and told not to drive.

I don’t remember much about the week before my surgery. Claudia’s birthday was approaching, so we went shopping for a new bike. We also took the kids to the Minnesota Renaissance Festival on that Sunday. On Monday, I had to go in for a mapping MRI. This procedure allows the surgeon to find the best path to the tumor. I remember how they had to shave small patches of hair off my head and glue on these things that looked like mint Lifesavers. When I went to bed that night, I fell to my knees and prayed harder than I ever had in my life.

My Craniotomy was scheduled very early the next morning. I had read the little book they gave me and had a rough idea of what to expect. The nurse told me that when I woke-up from it, they would ask me to rate my pain on a one-to-ten scale. They started to wheel me down a hall and the next thing I knew, I was waking up in the recovery room. I rated my pain at only a three and I couldn’t believe my surgery was over. I was wheeled up to Intensive Care and had no idea how much time had passed or what my outcome was. I heard Claudia’s voice as she entered the room. She approached me and asked if I had been told anything. When I told her that I hadn’t, she put her head down on me and said, “you have the bad one’. We both cried. My dad entered the room and put his head down near mine as well. Within hours, most of my family members were there to express their sadness. Poor Claudia had the tough task of telling Katie and Jamie the bad news.

Part II. The Battle Begins

I was in the hospital for six days. I had many visits, cards, flowers and so on. A priest visited to administer Last Rights. My neurosurgeon and his nurse visited each morning on their rounds. I had a tough time pinning the surgeon down for information. He always seemed to be in such a hurry. When I asked about work, he asked me what I was thinking. I said that if I only have less than a year to live, I’d prefer not to spend it at work. I added that it sounds like all we can do is to hope for a miracle, and he said that was about all we could do. One thing I’ll always remember is that my radiation doctor also stopped by to introduce himself. He told me something that nobody else had to that point, “these things can be beat”. He went on to say that they would treat the tumor aggressively and that they have new drugs and treatments that are very promising.

To my surprise, I was up and walking a bit the very next day. I was on an IV, plus painkillers, anti-seizure medication and steroids so I was not quite feeling like myself. I also had a persistent noise in my head that sounded like static. I was scheduled each day for physical, speech and occupational therapies. It was very tiring. My balance was difficult, but I noticed improvement each day. My speech was off a bit as I had a hard time putting my thoughts into words. It was when they started to test my short-term memory that noticed more trouble. I also struggled with math and problem solving. It was very frustrating.

During my first week home, I tried to catch up on my rest and build up some strength. We had several visitors and many people brought food along for our family. I was recovering fairly well. The things that bothered me the most were loud noises, background noise and a sore throat from the tube inserted during surgery. We also quickly learned that we were going to have to learn how to manage the number of guests and well-wishers. This wasn’t too hard to do and I believe most people appreciated our honesty when we had to hold them back a bit. I just felt tired and overwhelmed. In all, I still feel touched by all the support and love shown by my family and friends. To top it all off, my brother in law, Tom picked up where I left off in building my tool shed.

Three weeks after my surgery, I decided that I was going to attend the home opener for the University of Minnesota football team. My sister Sue, her husband Wayne, my nephew Mike and I had ordered season tickets earlier in the year. My surgeon said I could go, but suggested that I bring earplugs because the domed stadium was pretty loud and the noise would really bother me much more than normal. On the way downtown, I thought I was going to be sick and toss my cookies inside my brother-in-law’s new car. Somehow, I held it back and started the walk toward the stadium. Suddenly, I heard a loud whistle right behind me along with voices shouting, “Make way for the band!” Sure enough, all 300 members of the University of Minnesota marching band were ten yards behind me. They broke into the Minnesota Rouser. Drummers were drumming, trumpets blowing and tubas were bringing up the rear. I was trapped up against a wall and of course, my earplugs were in my pocket. All I could do was cover my ears and hope I would live through it all. By halftime, we were laughing about the whole thing. I was surprised that I was able to make it to the end of the third quarter before we headed home with a fifty-point lead.

My radiation therapy was to begin a couple weeks later. First, I went in for an appointment with my neurosurgeon. I was expecting to have my stitches taken out, but I was told that my incision was healing slowly and that it would be a couple more weeks. We did get a look at my latest MRI. Twenty percent of the tumor was removed during surgery. This left an irregular-shaped tumor about three and a half centimeters long. The surgeon said he was reluctant to remove any more than that because it was located too close to an area that controls much of my motor skills. I am so glad he made that decision. Moving forward, the plan was to have me go through seven weeks of radiation and to start Chemotherapy.

I met my Oncologist at an appointment a few days later. He seemed like a very nice man. His plan was to start my chemo with a light dose of a fairly new drug called Temodar. The thing I liked the best was that I would take it by mouth and not by IV. I just hate needles. Then, he asked Claudia and I if we really felt we knew what I was up against. We knew that my tumor was the worst type of brain cancer, but that was about it. He said that first of all, we need to have our affairs in order, to make sure that we have a basic will, a living, power of attorney and so on. He added that I could have a seizure that could kill me at any time and that I should consider psychological help for myself and maybe even the kids, as many people find that helpful. He said I should hope for the best, but to expect the worst. Another thing he said was to avoid reading about my condition on the internet. He claimed that it is full of outdated information and statistics that probably don’t apply to me. He finished with, “you are not a statistic.” You can only imagine how difficult this was to hear. As tough as it was, we still appreciate his frankness and the compassionate way he spoke to us.

My radiation therapy began with a process called simulation, which is part of the planning phase. One step was for them to make the mask that would hold my head still during treatment. It felt like I was having spaghetti poured all over my face. My treatments began the following Monday. One thing that really struck me was the number of patients in the waiting room. They all had different types of cancer. It seemed like I had entered a whole new world. One thing I was so impressed with was the radiation therapists. They must have handpicked all of them based on their kind demeanor. They were a true bunch of professionals.

Usually, Claudia drove me to my radiation treatments, but my dad, my brother and two sisters also took turns on occasion. I knew I was blessed to have such a great family. Two weeks into radiation, I was sitting out on our deck when I had to scratch my head. When I finished, I had a handful of hair. I knew this would happen but it still didn’t seem real. I decided to go with the flow, so I had Claudia shave the rest of my head.

I finally had my stitches taken out three weeks later. Still, my incision wasn’t healing properly. I slept with my head elevated as directed, but woke up each morning with pink stains on my pillow. My neurosurgeon decided to stitch me up a second time. This meant that my radiation would have to be suspended for about five days. Again, I had to be put under anesthesia and told to rate my pain from one to ten when I awoke. The next thing I knew, I was awake with the most pain I had ever felt in my life. When the nurse asked me to rate it, I told her it was eleven. She showed me how to use the morphine pump and despite the pain and my confusion, I learned very quickly. The radiation resumed a few days later. I still remember therapists wiping-up the fluid that continued to leak out of my head while I was lying down with my mask on. There were also a couple nights at home when fluid built up under my scalp. Occasionally, it came gushing out of my wound and soaked my pillow. We started different bandaging methods to try and prevent this from occurring.

My friend John called me while I was recovering from this second surgery. He had been told of my illness. It turned out that his tumor was also a glioblastoma. We found that so ironic. He also told me that his chemo wasn’t working and that they were about to try a different type of treatment. We both wanted to get together as soon as we could. He said that one of his goals was to fish together at the Wisconsin opener the following spring.

Part III: Setbacks

Throughout my journey to this point, one of my biggest complaints was the steroid medication. It kept me from sleeping and made me gain almost twenty-five pounds because I would eat everything I could get my hands onto. It also gave me a buzz that made me feel like I was very anxious or in a panic. However the worst part was how they made me so emotional. Two minutes after I would arrive at the dinner table, I would start crying. I would look at my wife and two kids and think that soon they were going to have to go on without me and that I would have to say good-bye to them. It was more than I could bear. I had to leave the table nearly every night until I could pull myself together. I knew that it was tough on my family. Dinnertime was supposed to be our time together and I felt like I was ruining it for everyone. I spoke to my surgeon who reduced my dose.

After seven weeks of radiation were over, the plan called for me to rest four weeks and build up my strength again before I began to tackle the full strength doses of Temodar. On one of those mornings during that time off, I heard the phone ring. Claudia was talking to my boss. She came back down the hall and told me that my friend John had passed away from his brain cancer. His funeral was to be that evening. John had always been a mentor for me in many ways. Now, he was not going to be able to help guide me through our common journey. I was going to have to make this one without his help. Claudia was able to take the evening off for John’s funeral. I knew that John was a popular guy, so there were hundreds of people in attendance. The priest spoke of John’s love of fishing and for his family. I couldn’t help but think that if my funeral may be coming up, I wanted it to be just like John’s.

After that event, it seemed pretty nice to know that I had a couple weeks off. The last few days of radiation had really worn me down. We got the results of another MRI. This one looked as if the tumor had been beat-up a little, but it was still roughly the same size. I still thought that the higher dose chemo would do the trick once I was able to start it. A couple weeks later, we went to a brunch buffet. I was having a hard time holding my plate steady and was spilling food all over as I tried to use my fork. I felt very embarrassed. A couple nights later, Claudia and I were pulling into the garage after a shopping trip. As I got out of the car I became very dizzy, lost my balance and fell against our other car. We told the neurosurgeon about it at an appointment the next day. He remarked that I didn’t seem like myself and sent me right out for another MRI. This one showed that the tumor had grown and that there was a lot of scar tissue that had to be removed. I had to increase the steroids and schedule another craniotomy for a few days later.

You know that you’ve been under the knife way too often when most of the people recognize you in the surgical operating room. In some ways it was nice to know what to expect, but in other ways I feared that I was pushing my odds. Like before, the surgical team introduced themselves and told me their roles. I asked if they could do something to make it easier on my throat this time and was told they might have a lubricant. The next thing I knew, it was lights out.

I woke up and immediately reached for my head. All I could feel were bandages and a nurse asked me not to touch them. Before she could say another thing, I told her my pain was a five, so I got to pump away with the morphine. I spent the rest of the day in Intensive Care and then was wheeled up to my room. This time they waited a day before I had to get up on my feet. Once I took a few steps, I could tell that it would not be as easy to walk as it had before. My balance and stamina were a real struggle. My surgeon and his nurse stopped in on their morning rounds to take a look at my head. He rolled away the bandage and suddenly put me in a headlock. He grabbed onto the adhesive cap that covered my scalp and began to pull it off. I can’t describe the shock and pain of that thing being yanked off. I imagined that my stitches were coming out with it. He apologized and said it was something he had to do. He also said I should expect to be there for about eight days and that therapy sessions would begin once again the next day. It was three weeks prior to Christmas.

The speech therapy went fairly well. I had some problems with stuttering. It was like my brain couldn’t catch up with what I really wanted to say. My occupational therapy focused on daily tasks like stepping into a bathtub. They also judged my reaction time. From there, they focused on my short–term memory. I struggled with that and found myself very frustrated. I was realizing that I had deficits that I never had before. I kept thinking of my mother and how her memory loss had affected her. Physical therapy was next. My right arm had never regained all it’s feeling and now my right leg wasn’t going exactly where I wanted it to go. I had to go slowly on the stairs. On the way back to my room, I passed by some patients in a swimming pool. They had recently become amputees. I admired their courage and told myself that if they can get by, I should be able to do the same.

After a week in the hospital, the doctors were still monitoring my blood. It turned out that I had developed some type of staphe infection, most likely through my incision. They started me on some antibiotics through my IV. As it turned out, the infection was more serious than anyone had thought. It was decided that they would install a PICC line in my arm. It would run up into my chest and end near my heart. I’ll be honest, I was in some type of fog and I couldn’t really understand what was going on. All I knew was that I was scared. It was finally explained to me that I would have this thing for at least six weeks. It would also mean they could take my blood samples and do IVs without any needles. I was all for that part.

Claudia came to see me every day. Several times, she brought Katie and Jamie along. After a week went by, I wanted to get home in the worst way. One night, I could hardly hold back the tears when it became time for them to leave. I still consider it one of the worst moments of my whole ordeal. I was so sad. This had gone on long enough. I continued to work as hard as I could during my therapy sessions. My theory was that I would be released much sooner if I did well. I asked the nurses to walk me down the halls while I held onto the handrail or tried to walk alone. I was ready to bust out of this place. My neurosurgeon stopped in one morning and I thought that this would be the day I would get out of there. He said he was very concerned that my incision still showed no sign of healing. He also said he had a good friend who is a plastic surgeon and he wanted to set me up for surgery as soon as we could. I didn’t believe what I was hearing, but I also knew that I had no other choice.

I stayed up late that night, as I still couldn’t sleep. I decided to practice my handwriting. I began by writing down my feelings, hoping that God would help give me the strength to help me get through all this. Moments later, a night nurse entered my room. I had not seen her before. She looked at what I was writing and went back to shut the door. She came back in with me and sat down. She asked me if I read the Bible. I had to admit that I hadn’t done too much of it outside of church. She went to the drawer by my bed and pulled out a Bible and asked me if we could read it together. She told me that I could boil the whole thing down to one passage: “For God loved the world so much that he gave his only son, so that everyone who believes in him may not die, but have eternal life.” John 3:16. Of course I had heard if before, but it suddenly took on a whole new meaning. She held my hands and we prayed that I would survive my cancer and be able to finish raising my children. I wrote down the passage and still keep it in my wallet. I remember looking out my window later that night and saying that I don’t know why, but I truly believe that I am going to beat this thing. After all, I have a Guardian Angel looking after me.

The plastic surgeon came in to meet me two days later. He used a napkin to demonstrate how he would lift my scalp, fold it over and sew it shut. He would also insert a shunt in the back of my neck so the fluids would drain from beneath my scalp into a bag. I was just happy to get some detailed information. The next thing I knew, I was back onto the operating table. I woke up and rated my pain at a six.

The day finally arrived when I was able to go home. It had been thirteen days in the hospital. Twenty-three days in all. Christmas was only a week away. Since I still had the PICC line in my arm for another five weeks, a home-nurse came over to show Claudia how to set it up and give me my infusions. I needed them twice a day and they each lasted ninety minutes. Claudia became very good at it. The drugs were delivered to our house each week and the home-nurse stopped by each Friday to change my bandages and take my blood samples.

We also had an Occupational Therapist stop by a few times to give me some memory work and make suggestions for any household needs. We ended-up buying a shower chair that came in very handy. A Physical Therapist also came by about every other day for the next three weeks. She helped me with my balance and strengthening. She also helped me manage the stairway. I still remember how tired I was the first time up the steps. She left me with several sheets of exercises that I had to work on several times per day. It wasn’t easy, but I could tell I was making some progress.

In the middle of February, we had an appointment with the Doctor of Infectious Diseases. I thought I would finally get to end the daily infusions and start with the full doses of Temodar. This was not to be. She had me stay on the drip for another three weeks. I was getting increasingly anxious about my tumor. It had been three months past the time I had planned to get started with the chemo and I still hadn’t been able to do so. I went in for another MRI and found out that the tumor was now just over seven centimeters in size. That is larger than the size of an egg. I also found out that my neurosurgeon was leaving for another hospital. I had mixed feelings about that. I couldn’t ask for a more talented surgeon, but his communication style needed some work in my opinion.

Finally, I was cleared to start my chemotherapy treatments. I would go for five days with Temodar, and then take 23 days off. The five days made me very tired. I remember walking around the block with my sister Sue. I remarked how I swear I could feel things moving around in my head. We both agreed that it was the chemo doing its job.

Three weeks later, I was back at the hospital to meet my new Neurosurgeon. He introduced himself and acknowledged that I had been through quite a bit in the past seven months. He said he had studied my case and recommended that I go in for another craniotomy and have some chemo wafers placed in my brain. He made a case that it would give me faster results, and even if we only stopped it in its tracks, that it would be a victory. He offered to set up surgery for later that week, and said that time was probably growing short for me. I couldn’t believe what I was hearing. We went back to our car and before we made it across the parking lot, I told myself that there was no way I was going to wait all this time and then change my plan. I only had a week left before I would get the results of an MRI after a full dose of chemo. No surgery for me, at least for now.

We went down to the University of Minnesota to get a second opinion about my case. Several people had recommended a particular neurosurgeon to us. He said that it would be very risky to have a third craniotomy. The chances for another bad infection increase quite a bit the third time. He mentioned other procedures and clinical studies we could look into. My sister Sue was also with us. She mentioned how she had read about some long-term survivors whose GBM tumors had gone away after treatment. He recited the statistics I was already aware of: Over half of GBM patients are gone within a year, eighty percent after two years and only one to two percent of them survive five years. He said those tumors never go away.

A few days later, I had an appointment with a family doctor just for a routine exam. He also acknowledged that I had been through a lot. He said I’d been poked and prodded quite a bit already and that he thought we should just talk for a while. He said that as we all know, it’s a very large, aggressive tumor in my brain and he was surprised that I could even nod, talk to him and follow our conversation. He thought that it was time that Claudia and I talk about what is most important to us. He felt there soon could come a time where we will soon have to make certain decisions about the length of my life versus the quality of my life. As I look back, I agree this was the appropriate information to share with us. It was also very sobering. However I still felt very hopeful.

Part IV: The Miracle

During the following week, I had my MRI and was back in my Oncologist’s office to see the results. I still remember a passage on the radiologist’s report, “No substantial change in the size of the tumor, and possibly even a slight decrease.” It felt so wonderful to finally hear some good news. I was actually looking forward to my next meeting with the neurosurgeon who recommended the third craniotomy. Not that I would gloat or anything. Actually, the appointment with him went well. He said that he was glad that I had such a favorable response to the Temodar. I especially remember him congratulating me and saying I may become one of their long-term survivors. I knew I had a long way to go, but it sure was nice to hear. He also said I wouldn’t need to come back unless I had problems.

It was back to my Oncologist’s office four weeks later to see another MRI. This one showed that my tumor was reduced by half and now down to four centimeters. He said this is great news, but that we shouldn’t expect to see it decrease any more than that. He thought it was almost unheard of.

Another four weeks went by and we were almost into the month of May. I was tapering down on the steroids. I still had all the water weight that I had gained and I also had the uncomfortable feeling in my head for a while after I would take them. The good news was that I wasn’t as emotional and was feeling better everyday. I told him that all my joints felt very stiff and sore. He said that the steroids had masked much of that pain for all those months and that I was going to have to “tough it out”. I tried not to laugh. Another four weeks went by and I had another MRI. My Oncologist showed us the scans on the computer. There was only a small speck on the screen. He pointed to what looked like a large open area and said this was where the tumor bed had been, but now it looked like there was little sign of my brain tumor at all.

One month later, it was gone.

I remember staring at screen in amazement. My Oncologist referred to me as the miracle man. I asked him if this meant that I didn’t have brain cancer anymore. He said that it meant that there was no visible sign of cancer, but there could still be some microscopic threads of it remaining. He told me that just a few months earlier he remembered seeing me and thought to himself that I probably only had two months to live. I thought back to the day when they first spotted my tumor on a CT scan. I remember how it didn’t sink in right away. I think I had the same reaction this particular day. However it didn’t take very long before I was calling and e-mailing everyone I knew with the great news.

The next order of business was to take another trip out to Wyoming. We had another great time and were all so thankful that we could still be together. After that, we continued my monthly appointments and MRIs. The plan was to continue with Temodar until I had been on the full dose for one year. We would re-evaluate at that point. Before I knew it, August arrived and I had survived a year.

In March of 2006, my Oncologist recommended that I stay on the full dose of Temodar for a second year. The difference being that I would start a new course every six weeks instead of every four. In August of 2006, I became a two-year survivor. During March of 2007, we reduced my frequency down to every eight weeks. I had my blood checked at that point and an MRI every sixteen weeks. There has not been any sign of re-growth. My next goal is to become a three-year survivor.

Part V: Reflections

Now I know why they refer to cancer as a journey. There have certainly been high points and low ones. The thing I am most thankful for is that I didn’t have to make it alone. Claudia, Katie and Jamie remain very strong and give me their full support. Claudia’s parents and family, my dad, my entire family and some great friends have all done so much. Their love and support have helped me pass several milestones: Katie’s high school graduation, my 50th birthday and our silver wedding anniversary. I am also very thankful for all the care I received at the hospital.

I continue to get well. I went to our local Courage Center in December, 2006 to participate in their driver’s assessment program for people with brain injuries or impairment. After depending on other people to drive me around for two years, I was able to do it on my own once again.

I think of my friend John very often. I wonder why his journey went by so fast while I am still walking through mine. I know he is happy that I get to spend a lot of time out on the lake.

I still get to witness God’s miracles. On my mother’s birthday, I was taking a walk and thinking about her. I looked up into the sky just as a hawk circled above me and called out. I knew it was my mom still keeping watch over me.

I want to make something positive happen from my experience. Each Friday, I work as a volunteer in Radiation Therapy. Most of the staff that treated me is still there. I tell them I am living proof that they all do wonderful work. I get the opportunity to talk with other glioblastoma patients as well as many other cancer patients. I share my experience with them and try to offer them hope. I firmly believe that maintaining hope is one of the key things to making it through a journey like this. Another important thing is to surround yourself with people you love and remind yourself and others to appreciate each day you have. Miracles are all around us.

Update: November, 2008

I’ve never questioned why I had to be one of those people that had to endure GBM, but I’ve often wondered why I was chosen to survive it. After all, the odds were not in my favor, or so I’ve been told. I feel that I am finally learning the answers as to why God let me survive. He is answering my prayer to help finish raising our children, and is using me to let others know that people can survive this illness. I feel privileged to be a survivor and I want to do my best to encourage other people with GBM. I wish I had a secret that I could share with everyone faced with the challenge, but I really don’t. I still believe that hope and prayer and a supporting family are every bit as important as a good neurosurgeon or oncologist.

As I write this, it is early November, 2008. I’m well over four years into my journey now. I have still have an MRI every sixteen weeks. My most recent one came back with no changes once again. I continue to take Temodar every eight weeks, however I just reduced the course to three days instead of five. I was struggling with anticipatory Nausea and vomiting (ANV) on the fourth and fifth days, but I believe that will no longer be an issue. My hope is to stay on Temodar for another year before I discontinue it. Other than that, things are still going well. I feel even better than I did a year ago. I continue to volunteer in Radiation Therapy at the Cancer Center. I try my best to cope with my remaining deficits. I still have problems with short-term memory. My right arm and leg still slow me down a bit. It’s also hard to concentrate for more than ten minutes without feeling some fatigue. When I am tired, I just have to go to a quiet place where I can rest and recharge my batteries for a few moments. My writing and typing is very slow compared to the way it used to before my illness, but I just expect it to be that way. I just have to think most things through just a bit more than I used to. In short, I learned that I needed to reinvent myself and sometimes it can be very frustrating. However I remind myself that I am a very lucky person in so many ways.

If you are a new patient or know somebody who is, never give up hope. Miracles are around us everyday and quite often they will surprise you, along with all the experts! Please feel free to contact me if you’d like. I’m happy to share my experience, answer questions and offer encouragement.

December 16, 2008

Hello again. I’m almost four and a half years into my journey now. One of my favorite movies is Monty Python and the Holy Grail. It’s a crazy movie, but my favorite line is: “I’m not dead yet!” Well, neither am I. My MRIs continue to show no signs of tumor regrowth. I still feel anxious every time I have to wait for that news, but when I get it, I feel so thankful. It sometimes seems like glioblastoma is just a bad memory. Of course it is more than that, so I still spend time every day learning what I can about it and trying to help other patients and their families understand that there is hope.

I had an interesting day last May when Senator Ted Kennedy was diagnosed with his brain cancer. A television reporter from our local FOX News affiliate read my story and brought her news crew out to my home to film a local angle to the breaking news. I was able to share my experience and let people know that despite what they may hear about brain tumors, everyone has hope. I guess that was my two minutes of fame.

I still volunteer each week at the Park Nicollet Methodist Hospital Cancer Center. I recently met a new patient who has GBM. I’m told that after our conversation, his outlook became much more positive and that he had renewed hope. I used to head-up some fairly large and lengthy projects during my working career. But none of them ever gave me the satisfaction of giving hope to a person that was recently given some very tough news. I don’t give false hope. I simply share my experience and tell them the same thing that my radiation doctor told me over four years earlier. That “these things can be beat.” Now, I’m living proof that he was right.

Several people have written to me via www.virtualtrials.com. This website posted my story in June of 2007. Many of the people who write were recently diagnosed, or know someone who recently diagnosed with GBM. I always write back, and in some cases still stay in touch. I also recently shared my story with a new website in England called www.btbuddies.org.uk. Please feel free to contact me through either website if you ever have any comments or questions. I find it encouraging see how many people are doing remarkably well and are already years into their journey. Of course, some are also struggling. My point is that every patient is unique and any one of them can make it through some dark days and write their own survivor story someday.

Thanks again for being an important part of my journey. Stay positive and let me know if you have any thoughts or questions.

May 30, 2009

I didn’t expect to update my story so soon, but I have some good news to share. In late January, I went in for my routine MRI and oncology appointment. Once again, there was no sign of any tumor. My Oncologist went on to say that my blood work continued to good as well. He also said that I could skip the blood draws from now on. He knows how I don’t like them. Then he said that he felt completely comfortable taking me off my chemo and wondered if I felt the same way. He said that I was currently taking such a small dose that it was probably more of a psychological thing for both of us. I quickly agreed. I knew I wasn’t cured, but asked what my status was:

He said that I am cancer-free.

I know I had tears in my eyes and I’m pretty sure he had at least one as well. Claudia and I shared a big hug. We asked if I could go back on Temodar should the tumor ever come back. He felt that it would probably be the best thing to try if that happened. In the meantime I would have an MRI every three months.

Well, three months passed and my next MRI in late April looked as good as ever. We decided that we would stretch things out for four months. This means that when I have my next MRI in late August, I will be a five-year survivor. Believe me, I do not take that for granted. I remember being told that my chances of surviving five years were one to two percent. However I also remember being told to ignore those statistics. I give people the same advice. I believe that new advances are changing those statistics and that ultimately there will be a cure for all brain tumors.

I remember when I felt I had reached my darkest moment, I asked God to let me see my children grow up. My daughter Katie just graduated from college and my son Jamie is seventeen years old and an inch taller than me at six-feet, three inches. They are almost there. I am so blessed.

Never give up hope!

Your BT Buddy

Tom