Last Updated 9/29/2011
(2007)
(2010)
(2011)
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 was 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 CAT 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 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 profile, 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 that I was all there. 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. 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. 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 200 members of the University of Minnesota marching band were ten yards behind me. They broke into the Minnesota Rouser. Drummers drumming, horns blowing and tubas 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 was to begin a couple weeks later. First, I went in for an appointment with my surgeon. 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 began with a process called simulation, where they get the equipment set up and aimed properly. The next 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 nurses. 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. 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 techs 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. It came gushing out of my wound, soaking 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 on. It also gave me a buzz that made me feel like I was 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, but 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 wore 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 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 unit. 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 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 staph 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.
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, as 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 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. 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 plastic 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. 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 roughly 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.
Finally, I was cleared to start my 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 survivors whose GBM tumors had gone away after treatment. He told us that that they 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 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 three and one half 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 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 last February 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 CAT 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 have my blood checked at that point and have an MRI every sixteen weeks. There has not been any sign of re-growth. Two months from now I will 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 so thankful for all the care I received at the hospital.
I continue to get well. I went to our local Courage Center last December 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 am 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 that 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 3/18/2008
Hello again. Thank you to everyone who read my story that was posted on www.virtualtrials.com in June 2007. I’ve really enjoyed hearing from so many people from the US and other countries who wrote to me via that wonderful website. I answer every letter and have talked by phone to several people who made such a request.
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.
I’m over three and a half 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 and a half 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 and offer encouragement.
Update 12/17/2008
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 re-growth. 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 the 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. Many of them know someone who was recently diagnosed, or knows someone who was recently diagnosed with GBM. I always write back, and in some cases still stay in touch. I find it encouraging see how many of them are doing remarkably well and are already into the third year of their journey. Of course, many 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 some day.
Thanks again for being an important part of my journey. Stay positive and let me know if you have any thoughts or questions.
Update: June 1, 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!
Update: 09/26/10
I often get letters asking how things are going for me. I appreciate those concerns and am happy to report that everything seems just fine. I passed the six-year survival mark in August. My oncologist recently moved to a new location, but my new one seems very nice and had good news for me when we went over my latest MRI. She showed Claudia and I some of my old MRI scans and we looked at my newest one. It still shows no changes. The report that used to be three pages long six years ago is now only two paragraphs in length and there are still no areas of concern. I’ve been having an MRI every six months and she gave me the choice of going another six months or stretching things out to once per year. I went with the six-month option, but will most likely shift to the annual MRI next time.
During the summer of ’09, I went in for some neuropsychological testing. It was a long and sometimes frustrating day. I’m used to the fact that my brain works more slowly than before this all began, but I never really had it measured as to how it works in comparison to someone of my education level and so forth. My short-term memory and mental processing speed are in the extremely low range. I can do very little math in my head and I struggled in several cognitive areas. It was no surprise that my right-sided motor skills are compromised and that I have difficulty with learning. The findings of the tests are expected to remain stable.
I know that doesn’t sound good, but on the other hand I’m very used to it because I’ve been dealing with the new me for over six years now. I can handle it! Sure, it frustrates me at times but I still consider myself blessed and lucky in so many ways. I can’t work, but I can still volunteer and be a husband and a dad. I can drive with some limitations and I can still go fishing!
My son Jamie graduated from high school and is attending college now. My daughter Katie works as a tattoo artist and does amazing work. I don’t sport any tattoos, but I’ve wondered what might be an appropriate for me should I ever let her give me one. Any suggestions?
Thanks for reading my story for the first time or just checking in on me. I appreciate your questions and comments and I hope you will remember to never give up hope!
Update 6/21/2011
My experience over the past three months shows how rocky this journey can be. Back when I was working, I had bought private long-term disability insurance through my employer to cover me in case of catastrophic injury or illness. Combined with Social Security, it's provided sixty percent of my former income since my GBM diagnosis in August, 2004. This February, the insurance company called me to request that I undergo a functional capacity exam.
I performed the four-hour exam. It consisted of: Sitting for thirty minutes, bending, stretching, lifting and carrying boxes, walking on a treadmill, etc. I've always been able to do these things with some difficulty since my diagnosis. They also had me write and type, which is slow and difficult for me. It seemed like such an inappropriate test for someone dealing with GBM. Then, the insurance company then wrote to my doctors stating that I am unable to do my former job, but asked what prevents me from working any other job in a sedentary capacity? I wanted to scream, "It's not my back, it's my brain you idiots!" My doctors wrote that I couldn't work in any job based on my education or experience due to severe cognitive deficits. So they've left me alone for now. I've contacted a disability lawyer just in case they ever want to pursue it further. The whole thing was very stressful. What bothers me most is that there is an insurance company out there that apparently thinks I am some kind of deadbeat.
At the end of April, wife Claudia and I traveled to Washington DC to see all the sights and participate in the Race For Hope to benefit the brain tumor community. It's the first trip we've been able to take together in six years. I've participated in other cancer walks, but this one was especially meaningful. We raised over $2,500 and the event raised well over two million dollars. There were about 12,000 participants, including 200 survivors. I'll never forget the feeling I had as the cheers went up for the survivors when we led-off the walk. I carried a list of the names of friends I had made and stayed in touch with over the past few years through www.virtualtrials.com. as well as fellow survivors that I've met in my volunteer position at the cancer center. Unfortunately, some on that list have passed away, while most are still fighting their courageous battles.
Two months prior to all this, an MRI had showed a slight change. I had one two months earlier that showed that the area had increased by only a few millimeters. So we scheduled another MRI in early May, just after the trip. In a cruel twist of fate, I noticed that my right arm and leg seemed to worsen almost as we arrived in DC. I didn't say anything until we got home. I called my oncologist and she moved up my MRI by a couple days.
The results showed that there was a small increase "without evidence of abnormal enhancement or cytotoxic edema involving the left dorsal thalamus and adjacent left posterior medial temporal cortex". It also said that they couldn't rule out tumor. My original tumor was in the left parietal area of my brain and that area still appears stable. We immediately elected to have me go back on Temodar once again due to my prior success with it. They also put me on steroid taper with dexamethasone. I've handled both drugs much better than before and have actually lost some weight. My arm and leg feel much better as well. We made appointments with neurosurgery and radiation oncology so we would have plenty of input.
At my first appointment, the neurosurgeon showed us how he would approach the targeted area. It is deeper into the middle of my brain, but he is confident that I would be left with no new or increased deficits. We also have Novalis radiation available at my hospital, but to my surprise, the radiation oncologist showed us how the MRI images without contrast (dye) show the edema, while the images with contrast don't show anything at all. So we will not use the Novalis stereotactic option for now. We also discussed how the infection I had following my second craniotomy in 2004, may have been a blessing in disguise. The antibiotics used to treat the infection back then, combined with Temodar may also be partly responsible for my seven-centimeter GBM disappearing over a five-month timeframe. I've heard the theory before. It is remindful of the brain tumor vaccine trials going on now.
So, I'm kind of on hold for now. The neurosurgeon thinks he will see me soon, but I will have another MRI in early July and see what affect the steroids and two courses of Temodar have had on me by then. While admittedly anxious, I am comfortable with the plan. I know I am in good hands and I trust that God still has His own plan to keep me around for a while. My next update will not be too long from now. I appreciate your thoughts and prayers, as I will continue mine for my readers and fellow survivors. I will never give up hope!
Update: Sept 29, 2011
Our plan came together as it became apparent that I might not be dealing with another glioblastoma. After watching it stay nearly the same size for another two months, we knew that I was dealing with something different this time. I had resumed Temodar and Dexamethason. The new tumor was slightly over two centimeters in size, but not growing like my previous GBM.
My medical team and I decided to move forward with the needle-biopsy option. My team felt that made the most sense because then we would definitely know what I was dealing with and how best to treat it. I was still a bit reluctant because I was afraid that I would need the biopsy, only to be followed by another craniotomy anyway. Then they said that if the tumor proved to be of a lower-grade, we could treat it with the Novalis stereotactic radiosurgery. The Novalis is located right in the department where I volunteer every Friday. You could say this made the decision a "no-brainer" because I know every one of the doctors, physicists, and radiation therapists and I believe they are the best in the business! I would also be likely to discontinue Temodar once again should everything go as indicated and hoped.
So I discontinued the use of Temodar after a few weeks and prepared for the needle biopsy on July 19th. The neurosurgeon described how he would do a mapping MRI first and take three samples through the needle. I was prepped like my previous surgeries and put to sleep. They drilled a small burr-hole through my skull at my front hairline and accessed the tumor near the center of my brain. They use some type of rotating sheath to obtain three samples while withdrawing only one at a time. That way they didn't have to go in and out three times so gain them. They closed the wound with ten staples.
When I awoke, the neurosurgeon said he obtained three good samples, which he wanted to send down to a friend at the university of Minnesota for the pathology. I had been told that would be in the ICU overnight with an additional day or two in the hospital. To my surprise, my neurosurgeon said I could eat breakfast the next morning in the ICU and go home. I didn't expect this but he said, after all "it's only a needle biopsy". Two days later I was mowing my lawn. Even though I felt wiped out.
A few days later, he called me to confirm that the tumor was a grade II astrocytoma. Definitely not another glioblastoma and that we could treat it with the Novalis radiosurgery as hoped. He said that this is great news for me. I agreed and was very happy to know I wouldn't need another craniotomy or any more chemo.
My radiation oncologist did the planning for the procedure. The physicist did his thing and the radiation therapists made my radiation mask for the procedure the following week. The doctor did a good job answering our questions and explained the possible risks and side effects that were possible. These included minor fatigue and radiation necrosis. He added that it was likely that I would have an MRI every three months for the rest of my life. That way, we would keep close tabs on everything.
A nice thing about the Novalis treatment is that the patient does not need the head-frame, or "halo" affixed to the skull for the procedure. I only needed the customized mask that was a bit different than the mesh one I had worn seven years earlier. My procedure was over in about forty minutes. I didn't feel any pain or discomfort at all. What remains is basically a dead tumor in my brain. I had a bit of fatigue, but showed up the following morning for my weekly volunteer shift. It was neat to be able to claim that I had brain surgery the previous day.
I had to stay on dexamethason for another two months. I had just finished my first month of the taper, so instead of taking it twice per day, I only had to take it once per day. I was scheduled to go off of it completely in early October, five months after starting it. I don't enjoy the sensations or reduced sleep at all, but I'm starting to see the light at the end of the tunnel once again. I passed the seven-year mark for GBM in August and am now close to being a two-month survivor of an astrocytoma as well.
I've mentioned over the years that I've enjoyed hearing from many of you through www.virtualtrials.com. In some cases, I have corresponded with people several different times. As I said before, many have been doing very well.
Unfortunately, two dear friends that I've been acquainted with through this website are no longer with us due to glioblastoma. Anette is a doctor in East Germany and wrote to me about her husband Volker two and a half years ago. They had been recently remarried and lived with their twin daughters. Volker was a wonderful husband and father and was diagnosed with GBM less than a year after their wedding. Anette and I share e-mails frequently. We've sent many e-mails, photos, postcards and even gifts through the mail between Germany and Minnesota last Christmas. She sent me photos from their family travels and it was heartbreaking to see GBM take its toll on such a beautiful family. I've been able to learn a lot about East Germany and I know that I have some good friends there now. Volker fought such a brave battle is greatly missed by his family. Anette and I will stay in touch.
Just recently, I lost another friend after a two-year battle with GBM. A woman named Lorraine wrote to me about her friend Juliet in Cornwall, England. Juliet had recently been diagnosed at the time and the three of us became good friends through www.virtuattrials.com. We shared a lot of our experiences with one another. I learned a lot about Cornwall and Juliet and Lorraine "rang me up" often to chat. We said that when she hit the five-year mark and I was done putting my kids through college we would get together in England to celebrate with some fish & chips. Juliet became a grandmother a year ago and loved her two daughters and husband Mark very much. I plan to stay in touch with Lorraine and Mark as well.
Last winter, Claudia and I booked a trip to Wyoming to visit Jackson Hole and Yellowstone this September. It's been six years since we last visited. We took the trip knowing that travel would be a bit challenging for us. However, we are so thankful that we were able to do it. I am still grateful for every day and I remind myself, and all of you to never give up hope!
Tom
