Mar 122020
 

Cheers to a mostly stable scan. The spots we found in November have “resolved” but there is a new spot in the field of radiation. It is most likely also radiation damage but we will continue to monitor closely, currently it is too small to biopsy. Thank you all for your words of encouragement. It really means a lot!

Mar 092020
 

Four years ago, today, I stood up at work to look outside and my world started spinning… 

While the physical spinning has stopped the metaphorical spinning has started up again.  How come I have made it this far?  Why me? That is the constant question anymore, Why ME!  Back in November we had a shock, two spots, we kept that sort of quiet until the next scan in January.  It appears they are nothing significant BUT it sure does not feel that way.  Last year we met a couple that were just starting their brain tumor journey and they were optimistic, positive, expecting a full return to life, fully believing they were going to beat this thing.  They were just like Jessie and me.  Except they were not.  I found out last week he passed away on the 22nd of February, barley over a year after diagnosis.

I knew no one, zero, not even a hint of a person with a brain tumor until a doctor told me in an emergency room that I had one.  Now in the course of 4 years I have met or learned about 4 others, three of which have passed away after I was diagnosed!!  Heck one guy I had even mountain biked with!!

I cannot speak to everyone in this tumor community but I get the impression we all follow similar patterns where there is this flurry in initial treatment, almost continuous searching for connections and hope, a constant barrage of well wishing and attention from doctors, then if you are lucky enough the calm after the storm and you are largely forgotten and you enjoy that.  Then comes the covert stalking of other tumor survivors to “see” how they are doing.  Secretly hoping, wishing, praying that they are living the normal, progression free life you so long for as well. 

Today on my 4 year anniversary of the discovery, I finally did my follow-up internet stalking and was devastated to find my guiding light, my rock, my compatriot on the East Coast struggling with reoccurrence that happened this summer.  She was the FIRST tumor patient I reached out to.  She has been so open and generous and ACTUALLY did something to help tumor patients while I just continued to live my life and plod along doing next to nothing with the time I have been given.  She has had some of the best care in the world.  She was about 4 months ahead of me.  I have been vicariously living in her successes and now to read how quickly and aggressively it can come back is terrifying.  Jessica Morris, my heart and prayers go out to you!!

So, Wednesday is my next scan.  Where in the past they were just standard procedure, heck I have gotten so used to MRI’s I can fall asleep in them.  This one will be with a heightened sense of awareness.  I cannot get out of my head, when will I stop being a statistical anomaly and become one of the masses. 

What is the magic equation to keep me an outlier?  I want out of this !@$!& dataset!!