Here I am again, unable to sleep, the usual culprit my back raging out... I've gotten pretty good at figuring out how to mitigate the crazy stabbing/radiating pain that I think I wrote about last time. This, coming from the Hodgkin's getting into my spine and eroding away at the bone as well as being in the soft tissue surrounding where nerves are present. Needless to say, my spine is weakened in this area and has become so sensitive that I've finally discovered why the pain mostly occurred at night when I was in bed. It has everything to do with keeping my digestive system working properly and avoiding eating late or eating heavy foods that are hard to digest like red meat. The problem is with the actual "weight" of my stomach or bowels (gross but true I'm afraid). So, simply, if I have a stomach or intestines that are full of food or digesting/digested food, the extra weight that adds to my organs or innerds if you will causes the pressure on some affected nerve in my middle spinal area when I'm lying flat. I've had a lot of time to think about this and through process of elimination, have come up with theory...
So, with that figured out, and some adjustments in how I eat, I figured I hopefully wouldn't have to deal with that horrible experience for a while or -- in a dream world -- forever...
Then, on the tail end of my respite in Delray, somehow I discovered pysiattica. Not sure if that's how you spell it but the spell check doesn't even recognize it so screw it! Anyway, I felt a twinge when I was still here in Detroit and as the days went by the twinge turned into constant pain until I was totally hunched over and barely able to walk. I then drove all the way up here somehow, thankfully with my buddy, 1200 miles that couldn't have helped the situation. When I got back here, I was pretty much crippled. The pain was constant and strong, 7 mostly with 10's spiked in there if I happened to move wrong. Conveniently, my good buddy Derek who I golf with in the summer is an ace chiropractor and after three sessions has me almost standing upright and on my way to walking without pain. Unfortunately, the pain that runs all the way down my leg is acting up tonight and keeping me up, ugh...
Brings me to the title of this post... I hate to sound ungrateful but sometimes (well, most of the time actually) the grind of the daily pain and other undesirable after effects from heavy treatment become too much to handle. It's hard to stay positive all the time or even most of the time lately. Chronic pain and fatigue will do that to you over time. It was funny, a person that has been out of my life ever since my relapse made a comment to me in a somewhat heated conversation (over misinformation she had received regarding a trip to one of my chemo sessions gone bad) at my sisters' first rehab center. She told me that I've really changed since I've had cancer... Being in complete shock of the ignorance of the statement, I didn't even know what to say back in response. I mean, how do you NOT change even just being diagnosed let alone going through treatment after treatment always feeling like crap only to find out that will continue for as long as I live (to keep me alive). I find it increasingly difficult to cope with the daily pounding, seemingly with a new flavor every month it seems and most times dealing with a few things at the same time...
I'm sure this sounds like I'm complaining and to be honest, I guess I am. It feels better to complain sometimes and by doing it this way, I don't have to worry about bumming out the person or people that happen to ask me lately how I'm doing. It's kinda hard to b.s. someone when you're hunched over trying walk!
I receive comfort by thinking that this too shall pass... The cynic in me asks though, "so what's next"?!
With all of this bitching and moaning out of my system hopefully, I can say there is one thing that makes me forget about all of my garbage and that is a visit to my sister who somehow carries on without the use of her right side, ability to speak and without the ability to control other essential functions. You know this is true that no matter how bad you think you have it, there is always someone out there that is worse off. When I see her and spend time with her and see how she struggles with the most basic things, I feel almost normal. It's actually harder watching her go through what she goes through than dealing with my stuff.
I'm hoping that with spring on its way, things will get better for everybody that has been struggling like Rich and my Mom who've been Nicoles caregivers and cheerleaders like they've always been despite dealing with their pre existing conditions and the infections that this nasty flu season brought down on so many. I also wanted to give a shout out to my friend Bekah who is having problems getting her bone marrow to cooperate after so many treatments for her Hodgkin's as well. Hoping there is something to reverse this trend or hoping time off from treatment will allow her counts to start going back up where they need to be.
Lots of hoping in there... Nothing wrong with hope right?
Here's to a healing spring,
Chris
3 comments:
Chris, sending you positive thoughts from Hartford, Ct!
--Virginia (mom of adult son who had HL)
Oh Chris I honestly don't know how "the warriors" of this obscenity especially of "refactory"Hodgkins carry on - I think of Hillary St Pierre every day..... I read her fathers words how she had been given the OK 13 times and thirteen times it returned...
I saw what it did emotionally to my son the two times he was told he was "cured" only for "it " to invade again.. I am not sure how even though he was a strong strong young man and a fighter - how much more of the pain ( physical and emotional) and treatments he could have taken..... you are an inspiration and also very human- and yes that obscenity has consequences just like my grief has consequeneces - Cancer by being a part of this family changed me and my family - we are not who we were and never will be again- the process changed me the loss of my son has changed me - I am accused of not moving forward - wallowing in the pain of my grief - but what they don't understand is that cancer adds another dimension to who we are.... me in the pain of the loss it caused ...and it is a real pain one that eats at you causing you to have to think about taking a breath.... I hope a hope for you Chris and admire your courage - you are tested daily I wish I had the right words to ease but I don't but there are so many who understand and would give you strength if we can....
Hi chris
Its msdelila from the forum. I occassionally lurk around at the hodge blogs. I just want to say I'm sorry about the back pain and i want to send you some positive vibes your way. I hope you will be able to find a remedy for your back issues. Are you doing any more trials? You smiled in your pic with your friends at the pub :) Even after all the crap you have to go through.
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