2nd brain tumor support group meeting

Those of you who have read my blog for a while know that I’ve had rough luck in finding a support group that meets my needs.  (See here or here for a refresher)…so I had kind of taken a hiatus from support groups (online at least) and focused on my blog about reaching out and connecting with others to find and offer support.

However, a few months ago I felt something was lacking in my recovery and I needed to do something else, or different, or find another avenue to connect.  Now, with Cowden’s Syndrome there are only a handful (literally – 1/250,000 persons affected) with CS so finding this connection is a rarity indeed.  HAH.  That’s what I’m finding since last July – who gets it?  Who really gets it?  I get so excited when I connect with another person who has Cowden’s Syndrome as well.  Helps me to not feel alone in this.  I know I’m not alone in this road (select friends and my family) – but sometimes, the weight of both CS and LDD weigh heavy on my shoulders.

So back to the topic at hand.  A few months ago I reached out to my former neuro surgeon to ask him if he has any information on gangliocytomas that I could link here on my blog.  (I asked the geneticist I saw also but she referred me to the neuro surgeon.  Urg.  This kind of stuff frustrates me a bit and goes back to my anxiety about falling through the cracks with my medical team.  Who can give me information on a gangliocytoma if there’s SO LITTLE INFO. out there about them?!)

He didn’t share with me any information on my type of brain tumor but he did refer me to a support group meeting about an hour from my house.  I kicked around the idea, almost didn’t go because it’s late in the evening and I don’t care for driving at night, it’s about 1 hour each way, and I had several excuses…see?  But I decided to go anyway.  🙂

Honestly – I didn’t know what to expect.  But right away – the awkwardness was there because I felt I (at first) didn’t fit in because my tumor is a benign (thankfully) brain tumor and those in the room are dealing with brain cancer, chemo, radiation.  I felt like an odd man out.  I couldn’t relate to anything they said – except for the 13 hour brain surgery that ended up being a craniectomy for me.

But as I sat and listened to their stories…my heart sank.  All kinds of emotions filled me.  I remember a gentleman there who is currently incapacitated.  I don’t recall much from his story except that he has a brain tumor (malignant) in the early 1980’s (I believe).  I think they only way (from what I recall) the medical professionals treated brain cancer then was radiation but ….. think about a 13 hour surgery in 2012 compared to brain surgery in the 1980’s.  I think you can figure out where I’m going with this without me continuing with any more details.

I was so struck by this man.  I don’t remember too much else from that night except him.  And seeing what I saw.  Seeing what brain tumors can do to human life.  I remember feeling rather numb as I drove home that night.  That could have been me.  Who’s to say why Heavenly Father has that man on this road and me on this?  And then why do I fuss and holler about CS when I looked at what I did that night?  (It’s that I have to figure out how I’m going to do this whole Cowden’s and Lhermitte-duclos thing [NOTE: This website is rather cheesy, but I wanted something different than Wikipedia tonight.]  That’s what it is.  Some days, like today – it seems like I have it figured out and in fact, I’ve kind of convinced myself that I’m OK.  Then – other days when I ponder about the last year and 1/2 of my life….I realize that I’m far far far away from “getting this” yet.)

(Granted, I’m writing this from memory from 2 months ago about my first meeting, and then attending my 2nd one last night is bringing all these emotions to the forefront.  My surgery, my recovery, my hospital stays, my medications (steroids, etc), my sheer panic about a CSF leak, etc.)  Even as I’m writing this I can feel my heartbeat rising a bit.

So, I just stopped.  And took a deep breath in.  Held it for a few seconds.  Then let it out slowly.


Why am I on this road?  Who the freak knows.  Why was it benign and not malignant?  Why did it led to my diagnosis of Cowden’s Syndrome?  Well – the WHY doesn’t matter.  I’m thankful for the brain tumor, only because I HAVE to be.  It’s what led to the diagnosis (via Dr. K) of Cowden’s Syndrome.

Sitting in the meeting last night, I felt divided.  (What’s more important?  My brain tumor monitoring or the monitoring I’m going through for CS? – I asked myself this, but I have this conflict going in my mind all the time.)  CS or LDD today?  Which do I choose?  Well…

I “choose” whatever I have to that day.  Meaning – if I have to see my current neurosurgeon or the surgical oncologist then it’s a CS day.  But, if it’s like today where I worked and then went to the chiropractor, went to a local pizza place and came home and worked out…then I choose neither.


5 thoughts on “2nd brain tumor support group meeting

  1. In my experience, taking one day at a time (and don’t forget 😉 ) with a smile on your lips is the best approach. 🙂
    I hope the support group helps you.
    Have a great weekend!

  2. I have never been to a parent support group and it’s been 20 years since Becky ‘acquired’ her brain injury. I think its because I am a private person and I don’t want to share, but it’s also because no-one else had survived the injury to the brain stem that she had. There was very little written about it, and I couldn’t see what these other parents could offer.

    Having said that, if you can find any connection with someone who has gone/going through something similar, then grab it with both hands!!! It can be a lonely road without some company. All the best.


    • Thank you for your thoughtful comment. For what it’s worth, there were several caregivers at this particular meeting – and although my mom wasn’t there it helped me to see the variety (?) or randomness of these beasts called brain tumors. (I understand your potential feeling of alone-ness ~ my brain tumor makes up 1% of brain tumors. How could I relate to them?)

      But I do understand where you’re coming from. I hope you are finding support in some way?

      Best. 🙂

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