Wednesday, May 13, 2015

Shhhh what's that sound?

Is it the sound of a freight train coming? You betcha!  That far off rumble you're hearing in the distance is the sound of a wellness freight train coming this way with a full payload of brain cancer healing! I know this because it's my brain, and my brain is my mind, and is my very soul. And deep down in my soul I can feel that rumble coming my way.

I know that Randy posted yesterday quoting the MRI report as "may be marginally improved from before." Even though it's a teeny weeny change, the report showed some movement in a positive direction.

Randy probably posted the statistics of how many people die per year from Glioblastoma (GBM); it's a shocking number. Randy probably also told you all that Glios are the most serious and deadliest type of brain tumors.  They have the ability to double in size in two weeks. In fact, during my stay at UCLA last fall where I was being fed with toxic food (chocolate pudding, and other sugary, and starchy stuff), and given boatloads of much needed steroids (to heal from the brain biopsy), my tumors did indeed triple in size!  But since I was released back into the wild from the hospital, and have been more in control of my diet and cancer, my scans have been mostly stable since then.

Randy's probably already posted about this too, but I do not have one but at least four distinct areas of tumor- they're all part of the same thing.  It's like a gob of melted cheese that oozed down into other areas of my brain all stringy and gooey. And the location of some of them are in sensitive areas that make them inoperable.

I'm not tolerating the full dose of the chemo treatments, which comes in cycles.  I'm about to start cycle 6.  The goal for UCLA is at least 12 cycles. At the dosage I'm on, I don't know if it's doing anything to move the needle at all.  But believe me, I'm throwing everything else I can at at it!

You've seen the pictures of my arrays being placed on my head for the Optune device - which hopefully is having a positive effect.  I'm on a very strict Ketogenic diet (thanks to Jen and Tim for helping here), and that could be helping as well.  I've added Turmeric supplements, Green Tea, and am about to incorporate a ProBiotic. I meditate, I do Physical Therapy, Speech Therapy, and continue to live my life with gusto and LOVE!

Any or all of this could be working synergistically, and some of these self-guided treatments (oncologist approved, of course) are new.  So that's the long story as to why I hear that distant rumble of that freight train coming!

Tuesday, May 12, 2015

A site update and some good news

First, the news that I know many of you are anticipating.  Jen's latest MRI scan was stable!  The report read "Essentially stable examination.  The peripherally enhancing lesions in the left frontal and temporal lobes may be marginally improved from before.  No progressive T2/FLAIR hyperintense signal abnormality."  We are obviously happy for a stable scan, but more excited by the possibility that there may even be marginal improvement.  The reports are usually conservative in nature, but to Jen's, mine and the doctor's eyes we all saw some areas of very slight improvement.  This is especially exciting considering the low dose of chemo Jen is on.

Meanwhile, Jen's platelets will hopefully continue to do well on this low dose.  They are currently falling and are lower than they were in the previous cycle at this point, but they are still high enough to resume chemo if they do not fall much further.  If her platelets hold, Jen will be resuming chemo this Sunday.

I have updated the site as well (a little later than I had wanted to) to reflect that May is Brain Cancer Awareness Month.  Please check out the links and get informed.  More than 69,000 Americans will be diagnosed with a primary brain tumor this year.  There are more than 120 kinds of brain tumors and Glioblastoma is not only the most common (affecting 40% of those with brain cancer), it is also the most deadly.

My family has safely returned to their homes back east.  We really enjoyed having my parents and brother out for a visit.  This was the first time Jen or I had seen them since this whole journey began.