Blogging in B Minor

Anyone who is brain tumor survivor has been on a winding, bumpy road – and this putting it mildly for many of us. I was reflecting on what I have learned so far after having a seizure followed by the discovery of an abnormality in my brain. This led to a diagnosis followed by my craniotomy, a grade 3 oligoastrocytoma, IMRT radiation and concurrent chemotherapy followed by monthly cycles of chemotherapy.

I have learned a number of very important lessons and principles:

1. Purpose - There is a reason this is happening. It’s not about “why me”. It’s about “why not me” and that this is an opportunity for me to turn this into a positive. I look at life ever so slightly different today. This blog helps me give back to other survivors who are on this journey. My kids and my wife – I cherish the small things in life – the simple things. I ratcheted down my expectations and for me this was wonderful. My career and everything else that sometimes took center-stage is not center-stage. I am a lot more judicious in terms of how and where I spend my time.
2. Paralysis of Analysis - I don’t over-analyize my condition. In the beginning, I did a ton of research and it was absolutely necessary. I encourage everyone – and I mean everyone to do research. There are several books that I read that changed me. One is by Dr. Peter Black at Harvard. I was fortunate enough to have him review my case – along with Dr. Mitchel Berger at UCSF who both agreed with surgery followed by Temodar. His book Living with a Brain Tumor is excellent. There are other books I think everyone should avail themselves to. There is a post on my blog that lists the books I read from cover to cover if you wish to look. My personal recommendation though, at least for me, was not to order so many books that I was innundated with material. I was already innundated with professional opinions. The natural tendency, particulary for those of us who are problem-solvers, is to dive in and learn as much as possible. I did. I think you need to know enough to be your own advocate and have intelligent discussions with all of the professionals and if put something on the table that is questionable – you can ask the questions.
3. Get Organized – It was extremely important for me to get organized. I created a binder. The front of the binder has CD holders – the plastic pages that hold 6 CDs to a page (to hold MRI CDs), a few sheets of business card holders (and a page for family contacts in case health care professionals had the binder) and tabs for the following: surgical history, prescription history/information, pathology reports, MRI reports, dictations (ask your doctor for these – they are usually available 5-7 days after your visits!), seizure logs, chemo/radiation calendar & schedule, diet documentation and research docs. I ended up moving all the research docs to a separate binder (printouts from internet research) as it got to be a lot. The point here is you are organized and have everything in one place. I had to go to the ER once for a significant seizure. I had my wife bring the binder. Instead of her having to recall everything, she just handed them the binder. Nice! Same thing later – it’s all up date, all of MRI scans are in there, medication I’m taking, surgery reports – it’s all there. Get organized. This is more important than any college class, a thesis – anything that we’ve ever done in our lives so it obviously deserves the hours or days it takes to make spin like a top.
4. Address the Feelings / Get Professional Help - For me, I went and saw someone (a PhD) to just talk about what I was/am going through. This was key. It’s not that anyone is going crazy here. This is a heap of trauma to be thrown on anyone’s lap. Do what you need to do to deal with it! I went through the emotions. It’s not easy but it’s necessary to deal with that component. I had hard days and hard nights in the beginning. Having all of this laid out for you is difficult and for me, if I just stuffed it down, played the tough guy – whatever you want to call it or whatever tactic you want to employ, it would just come back later. So, I dealt with it. Do I still have some difficult times – sure – but I am equipped to deal with them because I’ve addressed this and those times are fewer and further between and I still have this outlet.  I’m living life.
5. Don’t Turn Down Help! I think all of us, at some level, don’t like to “burden” people. People offer help and many of us say we’re “ok” and “don’t worry about it.” I know my wife and I are like that. Well, when this was all going on and friends and family wanted to help out, we started taking them up on it! It’s important and it really really helped. We were actually in a position where we couldn’t say no. For those of you who have read the blog back in late June and July of 2007, my craniotomy was followed by Rachael’s emergency c-section delivery of Keegan 2 weeks later. Yes, we needed help!
6. Stay in Today – I’ve posted about this and this is key for me. As a brain tumor survivor it’s so easy to become mired in tomorrow. This is dangerous ground for me because then I start clouding my head with the uncertainty of my condition, etc. The fact is, for every one of us in the world, we don’t know what tomorrow holds. I could pass away from something besides my brain tumor for all I know! So, it makes no sense to worry about tomorrow. Someone once told me that if I’m living in yesterday I’m regretful, if I’m living in tomorrow I’m anxious but if I’m living in today life must be ok and certainly I’m present to experience life in the moment. Sounds good to me!
7. Statistics are Meaningless – Anyone who shoves stats in my face – well, I don’t pay attention to them. As I mentioned in a post or two, I looked at stats purely from the standpoint of doing some estate planning which is the responsible thing for any father of two / husband to do. Other than that – who cares. Living life today – that’s the name of the game.
8. Get Involved! Build a blog and share your story (CarePages is a place you can do this and you don’t have to know anything about web design), get in touch with the National Brain Tumor Foundation – they have ways to get involved. There are a series of walks scheduled – one is in San Francisco. Volunteer. Giving back makes you feel good and takes the focus off of yourself.

There is a lot more that I have learned and I am sure you have learned a lot as well. I just thought I would throw some things up here that have really helped me since this all started for me back in December of 2006.

Best,

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