Update for November 2003    Last updated 8:00pm Sunday, November 16th

New links on this page: Latest MRI images from November 12, 2003
Growth Chart for Val's acoustic Neuroma tumor
How an AN tumor is measured
Fractionated Stereotactic Radiation (neutral and very thorough article)
Nov 16 Sun

Medical Results

Written by Val

Welcome back to our web site for yet another installment of the continuing saga of Grok, the tumor in Val’s head. As you may remember, last year we left off where Grok was shrunk in half and the prognosis looked good for completely healing after surgery. The tumor was only 20% of its original size and the doctors said I didn’t have to do another MRI scan for 9-12 months. We were all exuberant and confident going into 2003. 

At that time I was inexpressibly grateful to everyone who had helped me on my healing journey during the eight months post-surgery and I was understandably tired from the constant effort and enormous amount of energy I had expended in the process. So I basically kicked back and decided not to worry about it for a while (at least not through the holidays) and I really relaxed and enjoyed myself. Well, the weeks turned into months and I was feeling fine, so I never went back to the same level of intensity or focus that I had last year. I was still doing alternative treatments and supplements, just not at a very intense level.

 Then, sometime around April of this year, I got a little twinge in my left cheek that caught my attention because it reminded me of when Grok was huge and had impinged on my facial nerve, causing tingling and numbness. It occurred to me that maybe the remaining tumor was once again bumping up against the facial nerve (hence the twinge) but then I also remembered that as my brain stem slowly straightened out again, it often tweaked the nerve endings, causing similar sensations. So, since the tumor was certifiably small, I figured the facial tingling was simply the brain stem straightening out some more.

 As the summer progressed I noticed a few more twinges here and there and, again, thought it was just the brain stem returning to normal but just to be sure, I hedged my bets by returning to a more structured program of healing modalities. By fall the facial tingling had increased in duration and severity and I began to suspect that something else was going on. I cranked up my efforts to full throttle and went at it again. By October I knew something must be amiss, so I scheduled my annual MRI early to check it out.

 And that brings us up to the current situation. On Wednesday November 12th I had my MRI scan (see images) and it confirmed what I had suspected but dreaded: the tumor is growing again. The good news is it’s not impinging on the facial nerve as I had thought, but rather it’s the trigeminal nerve that is causing the tingling in my left cheek and lips. While distracting at best, at least it’s not as major as the facial nerve, which controls all motor functions for that side of the face, including being able to blink the eye, smile symmetrically, and chew correctly. Thank goodness for small blessings.

 So how much exactly has Grok grown? Well, it’s three-dimensional and it has grown in mostly two dimensions. Think of it as shaped like a somewhat squished Hershey’s kiss, with the tip pointed upwards. From the tip down to the base has pretty much stayed the same (in the specific way the doctor measured it. (See measurement photos.) while from side to side and front to back it’s spread out more. The side-to-side increase has been about 4 mm, and the front to back about 3 mm, but the real measure is the overall volume. The original tumor was a whopping 41.8 cubic cm; the surgeons estimated they had to leave about 40% of it, which would have been 16-17 cm3, but it was too ragged to measure immediately after surgery. At the last MRI eleven months ago it was 8.2 cm3. This year’s measurement of volume comes out to 13.2 cm3, or an increase of around 63% since then.

 What that means is Grok went from about 20% to about 32% of its size at the time of surgery. It is still a third of what I was carrying around before surgery, but the fact that it’s growing again is not good news. As you may recall, such growth is exponential, meaning that the bigger it gets, the faster it grows. (See graph.) Given the current rate of growth, its size can be extrapolated forward in time to see how long it would take it to reach its original bulk, and the calculation is roughly a year and a half.*  That is, of course, barring intervention of any sort.

 And that is where I am right now. What kind of intervention and how soon do I need to do it?  My doctors have recommended radiation within the next few months and this time I will acquiesce as, to use a famous quote, “I ain’t no fool!”  Having been through brain surgery once and knowing what this tumor can do (yes, it can kill me if left untreated) I am open to any and all modalities that can help me heal.   If that happens to include radiation, as horrific as that seems to me now, then so be it.  I will face this latest development as yet another opportunity to experience what life has to offer me with as much grace and humor as I can muster.  I have a deep faith that in the end I will persevere and live on. What more could anyone do?

 * Assuming a steady growth rate, the same data points can be extrapolated back in time as well to single cell size, giving an estimated time of the beginning of the tumor. See graph.

Philosophical Points

 As I have in the past, I would like to share with you my personal feelings and thoughts on what is happening in my life in the hopes that it may assist anyone else going through a similar life experience. I have found it immensely helpful to read or hear about how other people have handled their own wake-up calls and I have picked up many tips and suggestions on what to do in my own situation. So here’s some food for thought…

 I believe in the body’s innate wisdom and it’s ability to alert us to any imbalances that arise that need our attention. It generally does this through very obvious bodily signals that we can easily sense. For example, we are all familiar with very common body signals such as tension giving us a headache, or anger and resentment tying our stomach in knots, or constant stress resulting in repeated colds and flus. In a nutshell, our thoughts and emotions set off bio-chemical reactions in the body that can alter our internal systems and result in dis-ease. This is well documented in medical research and it even has a name: psychoneuroimmunology. (say that three times fast)

 While most of us can accept the above-mentioned examples as valid, not everyone is willing to take it one step further to see that every medical condition has an emotional (or thought pattern) component to it. Leading edge medical research shows that that is exactly the case and there are now whole books dedicated to correlating various diseases with their associated mental and emotional causes. (For example, see Louise Hay’s book, “You Can Heal Your Life”)

 While some conditions are self-evident, others are not so obvious and each person has to discover for him/herself where the imbalance came from that resulted in that particular dis-ease. In my own case, I am looking at where the imbalance manifested in my body (the brain), what side of the body (left brain, i.e., analytical thinking) and what it is causing me to do as a result (be more right-brain, ie., intuitive). All of these are clues as to some of the underlying causes of why I have a tumor in my left brain. The challenge is to piece together any other clues and intuitive “hits” I get as to where the cause originated, so I can heal that rather than just treat symptoms.

 I think I made a good start at it last year but I haven’t dug deep enough yet to really get at the roots of it all. As any decent psychoneuroimmunologist will tell you, if you don’t get at the causes of this particular manifestation of dis-ease, your body will eventually find another, usually more obvious, way to get your attention. That’s why we call these events “wake-up calls” because they are a clarion call to make some fundamental changes in your life if you want to go on living. In my case, one call is enough for me. I’d hate to see what bigger call my body might invent next time if I don’t “grok" it this time around. :-)

 So folks, that’s where I’m at right now. Once again I send my heartfelt thanks to all those loving friends and family who have been sending me their positive thoughts and prayers and who have been supporting me throughout this incredible journey. Thanks to Joe for researching topics and pictures, and keeping up the website. For those who would like to follow this saga as it continues, I will be writing another entry for Joe to post the first weekend of December after I see my other neurosurgeon. By then I will have more details about all the radiation stuff. For anyone with the curiosity and stomach for it, I will soon be sharing that experience as well.

 To all of you, for all you’ve done for Joe and me, bless your hearts!