Our BT Blog Buddies

Name: Deirdre Kohler

Type of Brain Tumour: Oligoastrocytoma

Grade of Brain Tumour: 2- 3

Bio: In May 2006, at the age of 30 and shortly after the birth of my 3rd child, I found out I had a low grade tumour in the left Temporal Lobe. I have seizures occasionally. The seizures are mostly complex partial. My symptoms are dizziness, inability to speak, vision disturbance and sometimes stomach cramps. In 2008, 2 years after diagnosis, I had brain surgery. My tumour was 7cmx5cmx4cm, I had headaches and couldn’t get out of bed. The doctor gave me 6 months to live if I didn’t have the surgery. After the surgery I was diagnosed with a grade 2 – 3 oligoastrocytoma. In January 2009 I had radiation and 6 months of chemo. The tumour has shrunk and remains stable. It seems to have shifted to be a grade 2. So far I am feeling good and have managed to pick my life back up. I started painting for the first time in 2006 after my diagnosis. I have had 2 exhibitions and sold quite a lot of paintings. (www.kohlerprojects.co.za) You never know how much your life can change – even for the good – when you are diagnosed with a tumour.

Blog name: Blog of a brain tumour and life

Blog link: http://kohlerprojects.blogspot.com

Name: Colin Messick

Type of Brain Tumour: Glioblastoma Multiforme

Grade of Brain Tumour: 4

Bio: Diagnosed on 31st July 2009 with a Glioblastoma Multiforme, Colin and his brother, Eric, now have a blog where they post about anything from Chemotherapy to ways people can help keep Colin's spirits up.

Blog name: Colin's Brain Cancer Blog

Blog link: http://colinsbraincancer.com/

Name: Jackie Ng

Type of Brain Tumour: Meningioma

Bio: Hi. i m into my 11th anniversary after Craniotomy meningioma and i maintained a blog about before and after my experience with this benign brain tumour .

Blog name: Jackie's Journey

Blog link: http://www.jackie-nak.blogspot.com/

Name: Russell

Type of Brain Tumor: GBM – Glioblastoma Multiforme

Grade of Brain Tumor: IV

Bio: I am a husband, a father, and a lawyer and I have brain cancer. Cancer can’t kill me. I was a police officer and firefighter for several years until seizures presented too many problems for that hazardous line of work and practice law full-time. I learned I had an oligodendroglioma in late 2004 and that it had mutated to a GBM in late 2007.

Blog name: RW Brain Tumor

Blog link: http://rwbraintumor.blogspot.com/

Laurie (left)

Name: Laurie Barram

Type of Brain Tumour: Oligodendroglioma

Grade of Brain Tumour: 2

Bio: In 1990 I had a Grand Mal epiliptic Seizure in my sleep. I started to take Dilantin but had another one twelve months later. The seizures slowly became more frequent throughout 1991 and 1992 and the Dilantin dose was steadily increased. In 1993 we decided to repeat all the earlier tests in an effort to find out why the epiepsy was getting worse. That time the result of an MRI scan stated “...an atypical low grade cystic Glial or neuronal tumour such as a ganglioglioma could not be excluded.” The tumour was in my right Frontal Lobe and I had surgery to remove it. The pathology testing reported that it was a benign low grade (WHO 2) astrocytoma. I had annual scans for five years. and there was no sign of recurrance so my neurologist announced that I was "cured". Thinking I had put it all behing me, I got on with my life, bushwalking, rockclimbing and doing all the outdoor things I love. Unfortunately, I had another seizure in my sleep in November 2006 and an MRI scan revealed that the tumour had grown back in the good brain tissue below the previous site. I had a second craniotomy and this time the pathology result described it as a grade 2 oligodendroglioma. A followup scan in January 2009 showed indications of a further recurrance, we waited a few months and further MRI scans showed a definite regrowth below the previous occurance and this time it was touching the Corpus Callosum. My surgeon told me that if it invaded that structure, it would become inopperable. So I had my third craniotomy in May 2009. This time we followed up the surgery with combined chemo and radiation therapy in an attempt to mop any remaining tumour cells. While in some ways I am thankful that I am fighting a low grade tumour, the second recurrance has certainly caused me to adjust my thinking about how best to live with this thing and I have found that I have not bounced back as quickly as I did after the first two craniotomies.

Blog name: Oligo-Lucky

Blog link: www.oligo-lucky.blogspot.com

Name: Chris Gulker

Type of Brain Tumour: Glioma

Grade of Brain Tumour: Grade 3

Bio: Chris Gulker has been an established company and startup executive, advisor, and investor, an advocate for open source software, a senior editor at NewsForge, columnist for London’s Independent, an Apple Computer publishing markets director, Adobe Acrobat Product Manager and founder of sfgate.com, www.examiner.com and www.gulker.com, published since 1995. Chris was diagnosed with a grade 3 Glioma in 2006.

Blog name: www.gulker.com

Blog link:

Name: Jane

Type of Brain Tumour: Low-grade glioma

Grade of Brain Tumour: 2

Bio: After being diagnosed with a low-grade brain tumour in Dec 2008 my life has changed dramatically in a lot of ways, some expected and some that have surprised me! Just wanna share some of these bits. It's up to you if you wanna have a peak at my blog

Blog Name: That's Life...

Blog Link: http://janeshann.blogspot.com/

Name: Jim Goeke-Morey

Blog: http://golfballinmybrain.blogspot.com/

Short Bio: 39 years old, married for 12 years, with 3 beautiful daughters, Junior High history teacher living in suburban Washington, DC, USA. In early summer of 2009, I started getting episodes of tingling and numbness on my right side with ringing in my right ear. It lasted no more than 60 seconds and no more than twice a day. It never got worse but never faded.  My doctor had me see a neurologist who ordered an MRI. This revealed a golf ball size tumor in my left temporal lobe. In September, I had a craniotomy that removed 70% of the tumor. I recently began chemotherapy and radiation treatment at the National Institute of Health in Bethesda, Maryland. I feel strong and am supported by a beautiful, amazing, wife and wonderful daughters, family and friends. Ironically, I had surgery to repair a ruptured achilles tendon just five days before the craniotomy. I extremely anxious to get back to cycling and running!

Name: Mark Miller

Blog name: Blogging in B Minor

Blog link: www.markmillermusic.org/blog

Short Bio: See http://www.markmillermusic.org/blog/about/

Name: Ewan

Grade of Brain Tumour: Grade 3

Blog name: Oligo crazy if I don't go crazy tonight

Blog link: http://community.macmillan.org.uk/blogs/oligo_crazy_if_i_dont_go_crazy_tonight/default.aspx

Short Bio: See HERE

Name: Chris Bradley

Name: Donna Bentley

Type of brain tumour: Recurrent Glioblastoma Multiforme

Grade of brain tumour: IV

Short bio:  Married to Julian; British - moved to Australia in 2000; First tumour: July 2005; Second tumour: October 2008; Third tumour: September 2009; Fourth tumour: October 2009; Still fighting; Using avastin every 2 weeks - very expensive!

Blog Name: TransitionbyDonna

Name: Andrea Garramone

Type of brain tumour: anaplastic astrocytoma.

Treatment: Awake craniotomy 11/24, currently undergoing radiation treatment NOT CHEMO

Age: 28

Location: dallas, tx usa

Name of blog: "We're going to make this cancer sorry it messed with me!!!"

http://tumorrific.blogspot.com/

Purpose: I wanted to write a blog about the feelings and not just treatment let the people know it is normal.  Also: bring brain cancer awareness UP!!!