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Back from the Abyss

Posted Feb 15 2013 7:03pm

Hello everyone.  I was just notified today from someone who follows this that it's been three months since I last wrote, sorry.  It's been a whirlwind of emotions and ups and downs both mentally and physically.  I really haven't had the desire to write not to mention the tools which I'm happy to report have been upgraded to an Asus Transformer tablet and coordinating plug in keyboard which is really sweet!

Anyway, it has been a tough few months to be honest.  Watching Nicole go through what she's had to go through has been difficult to put it mildly.  I'm so unbelievably proud of her for how she's handled everything with grace and and dignity.  She is a very special person and I'm so proud to be her brother.  Progress hasn't been as rapid as we hoped but she is taking baby steps which is ok just as long as they're in the right direction.  I think the latest milestone besides her speech getting somewhat better is that I discovered on a recent visit that she is starting to get feeling back in her leg!  She still can't move it but again, we'll take baby steps going forward all day long...

As for myself, it's kinda been the same story, rollercoaster ride of sorts both mentally and physically.  It's difficult dealing with all my crap but something about watching your only sibling go through much worse is much more painful because you feel absolutely hepless.  I bring her food everytime I see her because I couldn't imagine having to eat what they give her everyday, it's not the best and sometimes not even edible.  My mom understands this and has been spending so much time with her there, taking care of her both emotionally and finacially just makes me wish the other side of her immediate family would contribute a little more in healthy groceries, healthy meals, pajamas/sweats, room decorations, plants, flowers, anything.  Not to mention, my Mom has been working on all of the stuff behind the scenes like her phone calls, going to all her appointments (which is no picnic) and had to sell and purchase a new home (which has to be outfitted for wheelchair, not cheap).  I worry how her and Rich are going to do it with my Mom still going through cancer treatment and Rich with his heart and breathing issues.  They have given up their vacations and have put Nicole first like they've always done, as far as parents go, they both are all stars in my book.

To update on my health for those of you who are interested (thanks Dorrin from Bowling Green), I've been walking a tightrope staying on this trial.  My last scan lit up in my spine but the SUV levels were low so we continued.  This was actually three months ago.  In the time since, I've been dealing with unbelievale chronic fatigue.  It's been difficult to do anything besides sleeping.  For a while there, that's all I did was see my sister and sleep.  I think I had way more energy when I was actually going through the shit (chemo) than I did recently.  Not to mention, that thing that lit up in my back was my t-9 thru t-11 vertebrae which I think are still being eroded by residual or new growing cancer cells (as my latest scan  has also shown but I don't have the official report yet).  The pain, especially at night when I try to sleep, is like being stabbed or shot (I've never been shot nor stabbed so I'm guessing), hot burning bone pain that sometimes, most times, radiates into my abdomen and almost takes my breath away (or makes it hard to breath).  I don't know if the pain is causing spasms or what but when it happens, I know I'm not sleeping that night and going to be a zombie the next day.  So, the next issue is my lack of sleep.  If you don't sleep well at night, it just seems to cause so many problems in just functioning normally, it's almost like your brain doesn't know what to do.  It's hard to think straight after one night of insomnia let alone a string of nights, ugh... 

I have taken a respite though, I'm writing this from Florida which is serving as my retreat from all of this.  I have been feeling much better over the last few days and have slept normally two nights in a row!  Also, a big problem when I'm in Michigan this winter have been nose bleeds.  My platelets have always been low on this trial but when you combine the dry freezing cold weather with that, my nose is always bleeding.  Sometimes I can't leave the house because I can't stop it.  It gets embarrasing not to mention I've been going through a lot of sheets and pillow cases.  Thankfully, it's nice and humid down here and the nosebleeds instantly dissapear! 

So, the plan is to get another week of warmth down here then it's back up north to my home.  I miss my family and my sister.  Nice thing is I have  Chili with me so she keeps me company and keeps me smiling :)

I'm in the process of working on this place down here which has come a long way since I moved in.  Last winter I did the kitchen  (basically resurfaced everything) and this winter I'm going to work on the patio.  I'll post some before and after pics (if my back holds out) as soon as I can.  My energy has been better down here too thankfully.  I've written a bunch in the past on the healing power of the sun and this is just another example :)

Thanks for reading, hope to update sooner next time ;)

Chris

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