Brain Tumor Support
My Story May 27th, 2009
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Injection today. All of the standard labwork came back fine so the vaccine was sent overnight as usual. This really provides us with a lot of hope for us.
Among a number of emails I received, one really stood out. A mother emailed me to say that her family has been on this journey for 13 years since their daugther was 22 yeard old. They are at the hospital today for more treatment. So a prayer goes out to her and her family and friends that all goes smoothly and they are left with comfort and peace knowing it’s another step in fighting and getting out in front of this disease.
For me and I think I can speak for my wife (to some extent anyway), I think this is the essence of living with a brain tumor and how it involves the entire family in different ways. Support is certainly important – a key component of living life with a brain tumor. Closing off to the world never accomplishes anything.
From the family perspective, I just can’t do what I used to be able to do – climb ladders, blow through a list of items I want to get done. I get tired. I don’t feel how I used to feel. It’s different. I enjoy life though. It’s an adjustment for everyone. Even after everything we’ve walked through, there’s a continual need to adapt. My family can’t really know what it feels like just like I can’t really understand how my wife feels watching this unfold, trying to understand why I can’t be up for outings or errands in the afternoons, etc.
The more understanding, compassion and reciprocation that can be continued – realizing the better or for “worse” part of most of our vows and those limitiations, the better we do. Let’s face it though – this is a complex situation! This is but one part of it but coming together, organizing your treatment plan, being your own advocate and not taking a doctor’s first recommendation as the defacto answer. All of it comes and came together for us. But there are times when it can unravel and does. We all stumble but it’s a matter of continuing.
Was that a tangent? I think her email just inspired me and reminded me, again, of all the people in all kinds of circumstances face this – and many for a long period of time.
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Hi Mark,
I have been following your story and I am thankful that your posting your journey. My husband has a grade 3 and is experiencing the fatigue, weakness on his left side due to the tumor on his motor strip. He starts physical therapy next week losing mobility is hard. I have a couple questions if you don’t mind I might of missed it in your blog. The gamma knife have you had radiation before and how long ago? The valcyte is that part of your trial or did they decide to add it? Are you taking supplements if so could you share. You mentioned you did not want to take steroids have you thought about boswellia it is a natural drug that helps with swelling ben williams talks about it. We will pray for you and your family I know the rollercoaster your on stay strong.
Cindy
Cindy,
Back in April of last year, I did a post on supplements. The post is here:
http://www.markmillermusic.org/blog/2008/04/28/supplements/
ALso, under the Library tab, there is a lot of information about diet, etc. As far as gamma knife and radiation, yes I had 5 weeks of IMRT radiation to 60Gy with concurrent Temodar followed by 8 months of Temodar. Gamma Knife was a one shot of about 20Gy to hopefully hit nodule growth from the recurrence.
Everyone here really prays for each other and learns a lot for the experience shared so I’m glad you posted yours publicly.
If anyone has other questions let me know.
Mark
hi! im julia chan from philippines (if you know where it is) some where in southeast asia, and i kinda surfed by your website and got intrigued of your story.. you remind me so much of a famous local artist who most filipinos idolized for his songs and his love for my country. he was also like you a songwritter and a singer/rapper but unfortunately he died of leukemia but he stood straight, shared his stories, battled with pain and tried to fight his disease like you.
im actually not a tumor survivor or a severe disease survivor but i am a girl who also fights and keeps my hopes up when my world is not in shape. i believe that the last thing a person should lose is his hopes and its admiring to see that despite your condition your keeping your hopes up, not only for yourself but also for your wife and your 2 lovely kids.
keep it up. maybe your tumor is hard to cure but i know God is there, for him to keep you strong and give you more days or maybe more years for you to spend it with your family.
i’ll pray for you mark..