Sunday, September 28, 2014

A Year In

In a couple of days, we will officially be one year in to our cancer journey.  September 30th, 2013 was when Wes had his seizure that we thought was a stroke.  We went to the ER and they found a lesion on his brain.  For three days he was in the hospital with a team of doctors trying to figure out why a young healthy man such as Wes would have a stroke.  Only one doctor said "that's a brain tumor"...which of course was confirmed a month later on a follow up MRI...and then in November we got the official diagnosis after the biopsy...but I count September 30 as the beginning of our Cancer Journey.

And Wes is a walking miracle.  He has the most aggressive type of brain cancer there is (Glioblastoma) for which there is no remission and no cure...and so far he is still able to drive, program, work, talk, ...all that normal stuff.  He is himself...with side effects from the chemo.  This is the cancer that has a 14 month median survival rate WITH TREATMENT.

So...all that to say:  Wes is a walking miracle man, and he's doing so well, thank God.  The future is in God's hands, however long He decides to give him.

Me, on the other hand:  I am a wreck.  What if Wes lives for another ten years?  That would be a wondrous and fantastic miracle indeed, but I cannot live with this level of stress for another ten years.  I have been in crisis mode for a year and it is WRECKING ME.  And I don't know how to settle in for a longer journey.  I have gained 30 pounds, I am weak, I am wobbly, I have very little energy, I cry all the time, I am scared and I am grieving.  And from my perspective, this journey SUCKS.   I'm glad Wes is doing OK (he has much less energy than he used to, is tired a lot and struggles in that way, so it means many times nobody in the family has any "get up and go" oomph...dont' get me wrong...things ARE different, even though he is still alive, talking and working.)  But I am a wreck.

I need to figure out how to settle in for the long haul, and not just for a short "oh no he's gonna die in a year" crisis cancer journey.  And quite frankly, I don't know where to start with taking care of myself.   Everything costs money that we don't have in our budget, thanks to that lady that totaled my van last year and the new to our budget car payment that resulted. One big result is that we are now a one car family, and that we gave up our YMCA membership where I was going to the pool.  

I feel like I need to find a balance and I am so off kilter I don't know where to start.

In a perfect world, I could get a professional massage a couple of times a month.
In a perfect world, I would be able to get back into the pool at the YMCA and swim or do movement in the water that would not hurt my hip.
In a perfect world I would be able to find someone to help me figure out how to balance exercise (and what type) to get stronger with fibromyalgia pain so that I don't keep spiraling downward and getting weaker and weaker. (last winter I ended up in the ER from post-exercise fibro pain when I tried to take up lifting weights again starting w/ 1 pound dumbells...so, it's a THING that I just can't push through.)
In a perfect world, I would be getting better pain management help than I do.
In a perfect world, I would tighten down on my eating and give up the sugar again but...SPOONS...dieting takes energy and I have been SOOOOO overwhelmed just the thought of dieting makes me want to cry.  I try for a week here and there...and then fail fail fail.
In a perfect world I would be doing the exercises to help my hip.

In real life, I am drowning.  glurblegrrrblegurble.