Sunday morning. I've been home for a few days now and am adjusting to my new abilities around the house. I manage to spend the days on the main level where the kitchen is and nights after supper I head up the 14 stairs (feels like 1400) to bed. I get around during the day on the main floor using my walker and wheelchair. It's frustrating not being able to just stand up and walk into the kitchen and grab a banana. Well, I can do it it just requires a little more logistical planning than it used to.
The feeling in my legs and my "ability" to walk is very hard to describe. I do have feeling in my legs but they just don't work properly or go where I tell them to. Proprioception is the issue I'm dealing with (so I'm told). I can move my legs but can't tell exactly where my feet are or the position of my joints. That means I have to look down at my feet as I move to see where they are in relation to the rest of my body. It's the weirdest sensation to become used to given only a few short weeks ago I could walk perfectly normally (we were cross country skiing in Banff 4 weeks ago!).
The pain related to the surgery and numb legs has improved dramatically. I have very little pain now and what I do have is related to tightness and muscle spasms in my back near the incision site. Working on my sitting posture should help this out over the days and weeks to come. An intensive physical therapy regimen will also help (thanks Heather!) There is also a hope that more feeling will return to my legs over time as the swelling and inflammation and pressure on the dura around the spinal cord decreases. In a perfect world that feeling would return completely and it would be life as usual but I'm not sure that is a realistic expectation, more a hope.
I see Dr Lupichuck tomorrow at the hospital and hope to get a few more answers and ideas from her about where to proceed from here. I'm still due for a comprehensive chest-abdomen-pelvis ct scan sometime soon to see how the disease is doing in those regions. Perhaps radiation will be an option and perhaps chemo will also be an option. I do know that at this stage that quality of life is paramount. An intensive course of radiation/chemotherapy would be tough to take at this stage.
So, that is where I sit on this Sunday morning. Not much feeling in my lower body but a nice cup of coffee in my hand and a web of supportive family and friends to help me through these hard days.
7 comments:
Just letting you know that we're thinking about you all and keep checking in to see how you're doing
Love to everyone
Emma and family
Always thinking about you and Penny, and the kids of course. Stay strong!
Dwayne
Love you all… N,A & H xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Glad you made at home. You have been in our hearts since this whole thing began...
R & M Harris
I don’t pretend to know much about the world or how things work. I do know that you and Penny are extremely strong people, with or without cancer. I suppose that given such extreme adversity, some people would react differently. But what bothers me the most is just how unnecessary this all seems. You guys didn’t need any of this to demonstrate how strong and amazing you are.
We also other friends of ours that recently found out that their 11 year-old daughter has an aggressive brain tumor. In one week she went from absolutely normal to suddenly having blurred vision, to brain surgery and a terminal diagnosis of two months. That was just before Christmas, and over four months in, the tumor has shrunk with cautious optimism.
We’re all human so I suppose the natural question is why. But where do you go with that? I’m a closet Buddhist, and their first teaching is that life sucks. Their second is life sucks and freedom comes from not judging your situation.
But I don’t know, this situation sucks beyond anything I can even think of. I don’t even know how you would apply Buddhist principals to anything of this suck magnitude.
What I do know is that I think of you guys often, and I’m happy and honoured to read your postings. You demonstrate your strength and fortitude every day. This situation sucks beyond belief, but know that that there is also a layer of incredible inspiration visible to those around you. Thank you.
Greg
Well said Greg. You are all in my thoughts and prayers. I read your blog often and am ever hopeful you will kick Cancer's ass!! You show incredible strength and courage, I am in awe. You have an army of support and love, remember that. You came into my life when Andrew came to Brite Studios, you have all stayed in my thoughts and prayers, you are so loved.
Love Wendy
Dan
My words cannot convey the admiration and respect I have for you and your family as you battle. I am in awe of your strength and determination. Sending healing and supportive vibes your way.
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