Jim was recently diagnosed with a Grade 4 GBM in December of 2012. In recent months he dropped in to the Chris Elliott Fund offices for consultation on his case, as well as attended our patient conference in September.
We encourage you to read the story he shares today. His experience is one that we like to see: he was referred to an expert upon diagnosis, was provided access to innovative and advance treatment from the start, and he continues to live with hope, love and support from his family and extended support network.
We post our patient stories to further the messages of hope and inspiration we see from patients we work with. We also know that the more information we can continue to share the more we can help patients in their own journey.
If reading this story leaves you with questions about your own treatment or if you are just looking for a different opinion. Please give us a call or email, we are here to help.
September 30, 2013
My name is Jim. I am 55 years old and live in Sammamish, Washington. I have a wife, Laurie, and two adult children, Stacy and Craig. In December 2012, I was diagnosed with a Grade 4 Glioblastoma in my right temporal lobe. This is my story. But the story is incomplete. As I’ve told my family and friends a number of times since being diagnosed, the end of my story hasn’t been written yet!
In 2012 I was being treated by my Primary Care Physician for ongoing stomach problems as well as bouts of occasional dizziness or lightheadedness. I got abdominal MRI’s. I saw a gastroenterologist and a cardiologist. Nobody could find anything that might be causing my health issues. Then late in 2012 I started having some vision problems. I also started getting more forgetful and absent-minded than usual. I would forget why I was going somewhere or not know where I was. I would forget to put my belt and watch on before going to work. Not huge deals, but enough to make me notice. And I was still having the stomach troubles. So back to the doc I went. He said, well, about the only place we haven’t looked is in your head, so I’m sending you for an MRI of your brain. Maybe we’ll find something there. So I set up an MRI appointment for the following Friday afternoon. In the meantime, I also went to see my eye doctor. He confirmed I had some issues with my peripheral vision. During the exam I told him that I was going for an MRI. He was happy to hear that as he was concerned that a stroke could be the cause of my vision problems.
So Friday came and Laurie took me to my MRI appointment. I had the MRI and was getting ready to leave. Now, usually with tests like that they just tell you they’ll send the results to your doctor and he’ll explain them to you. This time, the technician said, the radiologist would like to speak with you and your wife before you leave. Uh-oh! We went into a room and the radiologist told us that he was quite certain that I had a large brain tumor. He told us that I needed to immediately go check myself in to Swedish Cherry Hill. He said it was the best neuroscience facility in the northwest. He would send my images there and said he would call the doctors over there. But he was insistent that I go there immediately.
So off we went. I called our children on our way there and let them know what was going on and they met us there. We found our way to Cherry Hill. I was admitted, then sent for another MRI.
The next morning, Saturday, I met my new brain Surgeon for the first time. Dr Sarah Fouke came to see me. She confirmed that I had a large tumor and told me that it needed to be surgically removed. She explained the surgery as well as the likely follow-on treatments. The Tumor Board reviewed my case on Monday and confirmed Dr Foukes’ diagnosis and treatment plan. The surgery was scheduled for the following Wednesday.
Wednesday came and she successfully removed a very large percentage of the tumor, which she said was about the size of a small lemon. She was very pleased with how much she was able to remove. I spent a few more days in the hospital recovering from the surgery and was discharged to go home on Christmas eve.
Several weeks passed until my first appointment with my new Neuro Oncologist, Dr. John Henson, at The Ivy Center at Swedish Cherry Hill. I immediately liked and felt comfortable with Dr Henson and his wonderful staff. He told me that what I had was a Grade 4 GBM, and that it was basically incurable. He wanted to start me on radiation and chemotherapy with Temodar as soon as possible. He also advised me that I shouldn’t plan on returning to work any time soon.
Laurie and I decided that we needed to just take this thing one step and one day at a time. We would both just do whatever needed to be done. And most importantly, we need to just proceed with life.
Soon Laurie and I started our new daily routine of going to Issaquah Swedish at 9AM each morning for my radiation treatment. The treatments themselves were no big deal. I started the Temodar. We did that for 6 weeks. Then I started a monthly cycle of taking Temodar. Take it for 5 days, then nothing for 23 days, etc. I just started my 7th cycle.
The physical effects of the disease, the treatments, and the chemo drug weren’t and aren’t horrible. Yes, some stomach issues and headaches. I get fatigued more than I used to. But overall, not too bad. I have not had any seizures, either before the diagnosis or since. I consider myself lucky to have fared so well. You certainly see and hear stories of people getting plenty sick while going through it. But hey, why not me be one of the few who get through it ok? I’m a good guy! I deserve it!
Part of proceeding with life meant still going on the already-planned vacation to Hawaii with our good friends in February. We had a great time. Another part was Laurie and I both retiring on August 1st. That’s been the plan for a long time. We decided years ago we wanted to retire at 55. So we turned 55 and retired this summer as planned. Proceed with life!
I will continue the monthly Temodar cycles until January. I’ve been getting MRI’s and seeing Dr Henson every two months. His reports on the MRI’s have always been good. He’s basically seen no new growth or spreading since my surgery. He says that’s the best you can expect. I expect that after my January MRI Dr Henson will decide on the next phase of treatment for me. I have complete confidence in Dr Henson and his prescribed course of treatment for me. I have not sought any second opinions. I have not done a lot of research into clinical trials or alternative treatments. Dr Henson did inform me of two trials I might be interested in. I looked into them and decided not to participate in either.
I still feel pretty good physically for the most part. I don’t feel limited in any way. I’m still playing golf regularly with my buddies. I can mow the lawn and do things around the house/yard. I am still a little forgetful and absent-minded sometimes. I struggle at times with mental tasks. I do sometimes have minor balance issues. And I’m learning that the mental toll can be as great or greater than the physical toll.
And so we proceed with life. We will deal with Brain Tumor issues as they arise. Meanwhile, we’ll continue to plan more vacations and try to figure out what to do with all our time now that we’re retired.
I can’t tell this story without acknowledging the tremendous love and support I’ve received from family, friends, and co-workers. From the time I went into the hospital I have been overwhelmed and humbled by the outpouring of love and support. It feels so good to know that there are so many people out there pulling for me and sharing my positive attitude that I will get through this! And they will do anything they can to help me do it.
I will survive! I will live a long life – for myself, my family, and my friends!
So that’s my story. I plan on updating it annually for many years to come!