Blogging in B Minor

Just a real quick post - and I can’t believe I didn’t post this when it happened!  If you didn’t know about it, the National Brain Tumor Foundation, an organization that I volunteer through to assist other newly diagnosed brain tumor survivors who are in need of support, merged with the Brain Tumor Society, another first class organization.  The two organizations combined bring together the best of research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals.  This merge was completed several months ago and the you can access their web site by visiting braintumor.org.

One of the great services on the site itself is a message board.  Register to use them.  You can network with other survivors.  This helps you - you are not unique.  Many feel alone in the beginning, I know I did.  After all, there are only 20,000 primary brain tumors diagnosed in the US annually - primary of course meaning it’s not a met. 

Take a look - a great resource.

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Tags:  Brain Tumor Research , My Story , National Brain Tumor Society , Resources (Brain Tumor) , Support

I’ve posted info about Dr. Friedman at Duke before. He’s a Neuro-Oncologist who is known to be aggressive and advocates the use of therapies in addition to the “standard of care”. I recently posted a link to his slides that were presented in December at a NBTF teleconference (available in my resource library) and several posts down from here you can find a single slide embedded in a post that diagrams the Duke “standard of care” for a malignant glioma.

I came across the article below by Rebecca Tuhus-Dubrow that is focused not only on Friedman and the state of brain tumor treatment approaches but also, most poignantly, on her brother who was diagnosed with a GBM. I think the article is a worthwhile read - it’s well-balanced and if you take a look at the slides Friedman presented in December and can slog through the technical aspects of the content, you’ll see that there is a lot of value to what is being discussed here.

I have said before it’s overwhelming for anyone newly diagnosed to wade through this strange new land - you are whisked into this overwhelming tidal wave of choices. However, with some strong guidance and a steady course, the right path can be achieved and I truly believe that.

For me personally, I’m at a point where I have stability and with a grade III oligoastrocytoma I’m going to maintain status quo with my week on/week off Temodar regimen and 60 day scans. However, if we see any enhancement, any changes whatsoever, there are options including avastin, tarceva and other clinical trials that I could have access to that I have discussed with my team here at the Sutter Neuroscience Institute and have also discussed with the team at the UCSF Brain Tumor Center. I stay plugged in.

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Tags:  Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , chemotherapy , Duke University , Oncologist , Resources (Brain Tumor) , Uncategorized

Here is a 50 minute video presented by the Central New Jersey Brain Tumor Support Group.  These are brain tumor survivors who deal with the same circumstances we do if you too are facing a brain tumor diagnosis.  They share their stories and these are very positive stories - people who are facing grade 3 and 4 brain tumors who are getting along well.  I would encourage you to watch this.

It is amazing if you haven’t ever been around other survivors or formed relationships with others how there is this common zeal for life.  We have a different perspective, now.  I have talked about this before.  It’s not that I didn’t appreciate life before - I just look at life differently and I live every day more fully.  Put simply, when your life is placed in jeapardy and could be taken from you, your perspective is rearranged for you a little bit.  And, in my view, that’s not exactly a bad thing.  There is positive in all of this.

It’s about looking forward.  You can’t get stuck and stay in one place - be stagnant and dwell on the diagnosis for example.  Ever try to sit on a bike without going forward?  Doesn’t work - it falls over.  We have to move forward.  The survivors on this video are all moving forward.  Check it out.

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Tags:  Brain Tumor , Brain Tumor Resources , Faith , GBM , glioma , inspiration , Resources (Brain Tumor) , tumor

The North American Brain Tumor Coalition (NABTC) is an advocacy group dedicated to educating policy makers and lobbying for increased research into brain tumor treatments. The overarching strategy of the coalition is to improve the quality of life and overall prognosis of brain tumor patients.

I mentioned in a recent post that there are various ways I have found to “give back” and get involved. I have found that by giving back and getting involved it not only helps other people who are heading down the same road I have been walking but helps me tremendously. Likewise, I have found people who are further down the road than I and they help me. This fellowship is important and it applies to caregivers as well.

The ways in which I get involved have different ways of impacting me which of course makes total sense. Some of the relationships I have formed have been life changing. I have email-only relationships with people that I pray for and keep in touch with that are special to me. I have other contact with people that may be brief but significant. Obviously one of the ways I have been involved and tried to give is with this blog. Blogging about my journey, based on emails I have received, has given some people hope and strength. It also helps me tremendously. My album River of Faith, although a piece of songwriting about the beginnings of my journey/trial as a brain tumor survivor, has touched other people which humbles me. Volunteering and connecting with brain tumor survivors seeking support through the National Brain Tumor Foundation is another way I am involving myself.

I know that for all us - I mean ALL of us - brain tumor survivors and everyone touched by the diagnosis of a brain tumor, this is frightening. It’s a dark world in the beginning but people shine light over it. You are not alone and I feel that God has been with me through this and He’s in the middle of this. For me, he has placed me in this place for a reason and perhaps my testimony is being used to help others. Whatever the case, I’m involved. I took care and continue to take care of my business. God is #1, my family is #2 and everything else falls someplace down below that. I am my own advocate and you have to be. I did my research and continue to do my research as necessary. Am I missing things.? No doubt about it. However, I feel I have done a thorough job. I have enough binders of material full of my independent research and have read enough books to feel very well versed on the subject of primary brain tumors. My point is that once I got past the learning curve (which I crammed by the way because I was so fearful regarding my cognitive abilities and mental acuity after the surgery) I moved on. I wanted to be involved - which takes me to the NABTC.

This coalition is the only of its kind so far as I can tell. There are a number of ways to be involved. You can become an advocate which really requires the most effort but it boils down to how much you want to put into it - an understanding of the issues, writing letters and getting involved with your Representative and Senator to help shape health care and advocate brain tumor research funding. Or, you can just be informed - just understand and help by spreading the word - attend webcasts, sign up for the newsletters from the NABTC, etc. Advocacy is important in the world. For us, it started when we were diagnosed with a brain tumor. We all immediately had to start being our own advocate - striving for the best care medical science has to offer. Once you know that you have that and if you are in a position to do so, helping further the cause is a great way to help us collectively as well as future generations, children and adults alike, ultimately overcome this disease.

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Tags:  Blog , Brain Tumor , Brain Tumor Research , Brain Tumor Resources , brain tumor survivor , Christian Music , God , My Music , Resources (Brain Tumor) , songwriting

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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Tags:  books , Brain Tumor , Brain Tumor Research , Brain Tumor Resources , Faith , My Story , Resources (Brain Tumor) , seizure

I wanted to take a minute and post some information related to some books I’ve picked up over the past months that have really been invaluble to me in researching my condition. I did a lot of research in picking and choosing the books I wanted to dedicate time towards and these have been excellent. For those that are visiting my site for purposes of gaining knowledge regarding brain tumors, I hope you’ll find this information helpful. The first book listed by Dr. Peter Black is outstanding. Dr. Black is one of the Neurosurgeons that reviewed my film as a second opinion and he was right on the mark in telling me that I should proceed with surgery. This led to the diagnosis of a grade 3 oligoastrocytoma when others had thought I had a low grade glioma.

• Living With A Brain Tumor: Dr. Peter Black’s Guide to Taking Control of Your Treatment by Dr. Peter Black - Dr. Peter Black is a renowned neurosurgeon. As the Chair of the Harvard Medical School of Neurosurgery and several Boston area hospitals, he has credentials that speak for themselves. I was fortunate enough to have him personally review my case and films. His book is invaluable and I would highly recommend it to anyone diagnosed with a primary brain tumor.
• Brain Tumors: Leaving the Garden of Eden–A Survival Guide to Diagnosis, Learning the Basics, Getting Organized, and Finding Your Medical Team by Paul M. Zeltzer - This book is invaluble. It provides you with information that is relevant but for those that are not as organized as most, it will equip you with techniques to organize your case, allowing you to be more effective in managing your care and being your own advocate which is essential.
• Brain Tumors - Finding the Ark by Paul M. Zeltzer (Companion to the above the above book) - you need to obtain this book that is the companion to the above book. It is a continuation and provides more detail.
• Coping With Chemotherapy and Radiation Therapy by Daniel Cukier - a good primer regarding the topic at hand.
• Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won’t Tell You About by Ben Williams - Don’t let the “name” of this book frighten you. You don’t have to have a “terminal” diagnosis to benefit from this. Ben Williams is a GBM survivor of 15 years - a dx that typically only affords a 1-2 survival rate. He has an amazing story and this book outlines what he did. His story is amazing and the techniques he used are a reminder to all of us that anything is possible.
• Navigating Through a Strange Land - A Book For Brain Tumor Patients by Tricia Roloff. This is a book of testimonitals from patients, caregivers and doctors. For me, it helped identify the feelings I was going through.

If anyone who is reading this has other recommendations in terms of reading materials I would love to hear from you. I would also be happy to add them to this post in addition to obtaining them myself. I am a big researcher - knowledge is power so please contact me.

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Regards,

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Tags:  books , Brain Tumor , Brain Tumor Resources , cancer , chemotherapy , GBM , oligoastrocytoma , Oncologist , Resources (Brain Tumor) , tumor