CancerCompass message board discussion started by Mazzo on 9/26/2007 http://www.cancercompass.com/message-board/message/all,16533,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ The long run If you are browsing these pages, I am certain you carry tons of uncertainty and sorrow in your feelings. It is not unlikely that you also develop some repulse by the constant afflictive tone undergoing every word you read about this disease, a tone that constantly undermine our strength, leaving us even weaker to face what is usually a flush of though decisions, doubts and pain.Maybe this is the main reason I kept myself from write in all these forums for such a longtime. However for me these are though times, and they demand though talk.I sincerely had no intention to offer cheap advice. Most of my experience may not apply to everyone. Despite the common nature of this disease, we are all blessed with singularity, making us unique in our beings and above all, in our decisions to manage life.All journeys begun with a tale and this is mine.In 2004 I found out the person I would like to share my life with. My girl in fact was a long time college sweet heart I did not meet for a decade, and despite the years, the flames were there.One year before she was diagnosed with GBM IV, undergone surgery, radio and chemo (Temodar), the whole package you are all familiar to. Despite the odds, I decide to not betray my own feelings, and without second thoughts, started our own life together. I was not naïve regarding the disease. Ironically at that time, I found myself working with radiotherapy devices, and cancer was somehow I daily issue in my professional life.If you already made the counting she is a four year survival, completing five in November.There are no days that were not lived fully and intensely. More than one time, we kept ourselves planning vacations to the very next day. Putting ourselves on the places we dream of, and best of all, living life in every small thing completely. It may sound desperately, I disagree, it was only right.No wonder we got to a point physicians elected her case as an astonishing out-of-the-curve. In 2006 they decided to stop the chemo rounds, afraid of causing some chemo resistance in those remaining cells. This event also brought us to another decision. After consulting each of the doctors involved about their opinion, and also fighting our on demons, we decided it was time to fulfill our dreams with a child.Despite chemotherapy – and after a cautiously wait for its effects to wash out – fertility was not a problem, and in the end of 2006 we found ourselves marveled in front of a two lined home pregnancy test.In fell lines, it is obvious that it is not only joy. Fears were all over us. The remission nightmares mixed with all the parenthood related anxiety, were terrifying.In a dark twist of fate, during the 27th week of pregnancy, one MRI brought dreadful news. It was back.Controlling its evolution in a two week interval, we went as close as possible to a reasonable due date, for a schedule c section. Our daughter born remarkably healthy, after a 35 week pregnancy, and went home after the usual three days stay at the hospital.The very next week we went trough surgery. The tumor was completely removed, and the motor deficits she carried, could be considered mild compared to an expected full paralysis of the right-side. For weeks she struggled in daily physiotherapy sessions to regain her walking abilities and it pay out quickly with her achieving the one goal she promised to herself while in bed at hospital: be able to walk and carry our child in her own arms.It all may sound astonishing, but as I said initially, these are though times.Two months after resection, the tumor is back according to the MRI. There are no other signals of neural damage, despite those remaining from the surgery. Temodar cycles are back, and up to now another round of radiotherapy is out of question due to the lesions it may cause.Summoning, black days.Even in my sleep deprived thoughts, watching the gigantic amount of medicines falling from our shelves strangely sharing the space with baby care manuals, I can assure. There is no reason to change a thing for this disease. It will of course perform a monster alteration in your way of life, but there is no reason to let it alter your being. I choose more than ever to help my girl to find grace in every little moment, despite the blues of uncertainty. Uncertainty itself is more painful than fading away. The tricky task is to catch the moment, hold it tight so it can always be yours. It will end surely. As pain will. And when both ceased, you will have to choose which one you will remember the most. Sincerely, Mazzo Mazzo Wed, 26 Sep 2007 00:00:00 GMT