Home is Good

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.

Home

I'm home. It's great but no miracle solution to this terrible numbness and inability to function properly. The feeling is coming back SLOWLY maybe, but I'm still severely mobility restricted. If you saw me try to get around the house and perform rudimentary daily tasks you'd be sad at the sheer lack of ability. I can only just get to the bathroom myself, get in and out of bed myself and get around the house by wheel chair or walker or cane. It's supremely sad. Now layer on the fact that I still have some advanced cancer and it doesn't seem to be letting up and you have one dude and his family in a fairly crappy psychological place. So thank you to all of those who have visited, looked after kids, brought meals, offered support and information and just generally been awesome friends.

Home Tomorrow

Like the title says, I'm headed home tomorrow sometime. It's Andrew's birthday tomorrow it was my mums today and Penny's dad Jim's Thursday. Let the celebrating begin! More specifics on my condition to come.

A Long Day at the Hospital

I've written two other blog posts today but haven't posted either. One had details about all the doctors and services I had to see today, and the other was a dark, grammatically challenged dissertation on how cancer has negatively affected my family's life. In reality what I want to post is somewhere in between the two. You know a touch of practiced fact mixed in with some assaulting commentary on the reality of a terminal cancer diagnosis. I'm not sure I'll ever get close.

Today I talked with neurosurgery: "everything went went perfectly - you are ready for discharge today", Occupational therapy: "we'll order you the supplies and devices you need for home - you are ready for discharge tomorrow", Physiotherapy: "to go home you need to be able to get in and out of bed, get in and out of your house, get in and out of the shower, and use the bathroom - there will be a test tomorrow and then you are ready for discharge" and outpatient care: "let us know what you need when you get home and we can help you out as needed". I still need to ditch my pain medication pump and get onto oral pain meds before I'm discharged which means I could be here until Wednesday but we'll see what tomorrow holds.

I also got to spend the day with my awesome wife. It's times like these you really know you married the right person. Thanks for today Penny. I love you more than you know.

Thanks also to our friends who have reached out to support us in every way possible. You are the best.

A beautiful sight!

The pictures are pretty low-res but they get the point across. I can get on my feet with the help of a walker. I can move around a bit. I have to watch my feet closely as though they are disobedient 2/12 year old twins who may stray from their given instructions at any time. At this point I'm just just I'm up.

Feeling Ok

I had a little back surgery yesterday and it went well. I'm now pretty high with the amount of morphine they're giving me but it sure helps with the pain. I still have lots of numbness and tingling in my legs but that might get better in the coming days. I'm thinking today will be about moving around some more. I keep falling asleep while I'm typing.... Goodbye for now.

Dan's Spinal Surgery

Sorry to not give the full story, but the short notes are... Dan's tumor in his spine has been pinching his spinal cord. In the last week he went from having tingling toes to numbness from his mid chest down. By Monday he was struggling to walk and had fallen a few times. An ER visit and an MRI later confirmed the tumor was the cause. Dan went in for surgery first thing this morning to have a portion of his T7 and T8 vertebrae, and as much of the tumor as possible removed. We are hopeful that his feeling and muscle use will return. Obviously it's been a hard week for The Tutts. Making decisions no one wants to make. We greatly appreciate all the support and love that everyone has sent. It is truly what carries us through this horror.

I've just been updated that Dan is out and in recovery. We will of course keep you posted.

Penny.

Getaway

A couple of weekends ago Penny and I were able to get out of town for a couple of nights in Banff at the Banff Springs. Neither of us had ever stayed there so it was a really unique experience. Without the kids around (thanks mum and dad for taking care of them!) we were able to have a relaxing time. We lingered in bed, visited the spa (had my first pedicure!), swam, went xc skiing, ate well and generally had a great time. Unfortunately the one thing that we didn't do well was sleep. Foreign bed + back pain from those annoying metastases on my spine = no sleep. Not having kids around or a particularly difficult schedule meant we could take things slowly and were able to adapt.

A particular highlight of the trip was the food. We indulged on both nights in some fine dining and our lunch selections provided a robust gastronomic experience as well. Actually, our evening meals fell quite at opposite ends of the spectrum. The first night we had italian on site in the hotel and we definitely overindulged. Multiple generous courses made the walk back to the room more of a challenge than it ought to have been. Learning from our lesson the second night, we ventured into town and split a fantastic burger at the Banff Avenue Brewing Company and indulged in a couple of 4$ pints (A far cry from the $12 Guinness I had at hotel earlier that day!). Our best find for lunch was root beer beef tenderloin bites and fresh flatbread at the bar in the hotel overlooking the mountains. Fantastic.

Despite our lack of sleep we made it out on the trails for an enjoyable morning of cross country skiing. The weather had been bitterly cold but we managed to thread the needle and on that morning it was a balmy -13 or so when we set out and a near-tropical -5 by the time we got back. Very reasonable weather for skiing compared to the -25 the day before. We did a simple trip up one side of the Spray River and back down the other. It had been so long since we'd been out skiing together and we really enjoyed that time on the snow.

I took my camera out (of course!) so here are some shots from the weekend.

Dear Banff Springs Hotel

I've been with you only a few hours and I can tell 2 nights will not be enough. I look forward another rendezvous in the near future.