Tutt Family Fundraiser

There are a huge number of people that have been working their butts off to pull off an amazing night for the kids and I. October will be over before we know it. The fundraiser is set for Saturday, October 25th. Ticket sales have been slower than expected and if you're anything like me, you maybe were leaving things until the date was closer.... But we could really use your support. Please if you are planning on attending (and I really hope you are) buy your tickets!

Please visit tuttfamily.ca for information, and to buy tickets!

I'll take a moment right now to thank everyone involved in putting this event together. It's going to be a great night.

Love of Fall

Terry Fox Run

Well I'm sure there are many of you out there wondering how these Tutts are doing. We're doing pretty good. Summer was great, the kids and I spent time on the coast with Dan's Mom and Dad (Nicky and Bruce) and there isn't one bad thing to say about the weather we had. Gorgeous!

The kids have settled into school really well. Carly in grade 4 and Andrew in grade 1. Big adjustment for Andrew but he was more than ready and is doing great, just like his big sister. Bradley continues to grow and change always testing the limits and making everyone smile around him. Early in the summer he finally gave up crawling for RUNNING.... and there's been no stopping him.

Bradley in the Rain

I think about Dan almost every minute. Most of the time I just smile at a memory or my angry.. "where did you put that Dan!" moment. Sometimes I cry, because I miss him so much it hurts to even take a breath. I am reminded of how hard the end was for him and I'm so glad that's over for him, and us. I feel how how much work and stress life was for us. I see it now. We didn't know it then. I feel sad that he never got to know the after.... the calm our house has. Amongst the tears there is a lot of laughter again, something I know he would love. I honestly never knew how funny my daughter was. I couldn't hear or see it before. He knew. I love, as I always did, seeing Dan in the kids. 

I love to talk about him. I think people understand that. I love a memory shared, or a joke at his expense or mine, it makes me feel good. It's the only closeness to him I get anymore. This is such an incredibly hard journey for everyone, not just me and the kids. I think actually we were more prepared than the rest of you. I started my grieving with Dan. We grieved his death together for months and months before he died. Thank God I had him to help me through some of it. 

I love fall. The colours, the crisp air, the calmer winds. Dan took amazing photos this time of year. Like the one that boarders this blog. Gorgeous blue sky with bright yellow aspen leaves. I miss him.

Celebration of Life

Just wanted to let you all know that a service will be held for Dan on Saturday, June 14 at 4:00pm
This will take place at the Edenbrook Memorial Gardens and Funeral home.
17th Avenue at Lower Springbank Road SW Calgary, AB
Everyone is welcome. There will be food and drinks. Dan loved to socialize over drinks and food. Please come celebrate and remember with us.

In lieu of flowers please visit tuttfamily.ca
There is a donation website set up for trust funds and financial support for Carly, Andrew and Bradley.

Daniel William Tutt

Tuesday January 18, 1977 5:30pm - 

Tuesday May 27, 2014 11:07am 

He's gone, and nothing will ever be the same again. 

We love you Dan, we miss you already, and none of us will ever forget you. 

Birthday Sorbet

Rosedale Hospice

Well many of you were aware from Dan's last post that things have changed drastically. What you may not realize is seeing Dan at home we all saw this coming. He is so positive with his outlook on everything, including this horrible final chapter his is enduring. He asked me about that last post of his. He had written it, feeling very down and lost that day. I encouraged him to post it, as I think you all need to know both sides of this journey he and all of us are on.

Dan was moved today to the Rosedale Hospice. It's such a beautiful spot with very caring people all around. It was hard on all of us in my home right now. Bruce and Nicky (Dan's parents), and Carly Andrew and Bradley who were all home, to watch him leave his home for the final time.

Dan's liver seems to be the biggest problem and with its failure to clean up the blood, there's a lot of junk getting to his brain. He very muddled and confused which is very hard to watch. His short term memory is shot! The only blessing there is he really isn't too aware all the time of what's going on. But then he's saying he is going to just run down 3 flights of stairs and grab himself some whip cream for his pie, or zip out to the camera store... saying to me "I just want to look!" He hasn't even walked with a walker in weeks. Funny, sad, hard to watch. They all come to mind.

I will try to keep everyone posted, as you all have been so good at keeping us in your thoughts and/or prayers. What an amazing out pore of support we have had. You all fill us up with love and food and encouragement each day, thank you.

It's my birthday tomorrow, and all I want is to spend the day with Dan, my best friend, my love, my husband, the father of my children and my life. It all branches from him.

I just hunted for a picture of Dan and I. This is from October 2007 when Dan ran a marathon.

Why isn't there more pictures of JUST Dan and I?

A Mirror of a Good Day

Today was a nightmare all around. I'm having trouble with everything: eating, sleeping, transitioning, using the bathroom, walking and just about everything I need to function as a human being. It's been demoralizing to say the least and I'm ready for all this shit to end.

A Good Day Comes To A Close

I hope to send lots of posts to the blog with updates like this one. I had a great day today. So many visitors and I'm tired like you wouldn't believe but it was all fun. I fell asleep often and I'm sure I was snoring at a couple of points but it was all worth it. I didn't make it outside due to the weather however there is always tomorrow when it WILL shine sun. OK, I'm off to sleep now.

On Getting Outside and Back Again

These past few days in the Tutt household have been good. We've managed to get outside onto the deck as well as to take advantage of some of the outpatient palliative care services including nursing, social resources and physiotherapy. As I've posted before, the getting outside part seems to be particularly helpful in fostering those optimistic thoughts that I desperately need right now. It has been a chore re-learning how to transfer between bed-wheelchair-chair-toilet. It's incredibly frustrating re-learning something you were proficient at just a few weeks ago.

Over the upcoming weekend we have lots of visits scheduled with friends and family. It's great to feel that support and we are totally looking forward to seeing everyone here (in moderation). Hopefully this will also provide opportunities for more outside deck visits.

On a somewhat related note, I'm finding it hard to type these days. I still have some peripheral numbness in my fingers from chemo long ago but I also have to prick a finger 4 times per day to check my blood sugars. I suppose I can't blame poor grammar on that, but I will gladly use the excuse  for any posts that seem incomplete or simple.

Here are a few pictures from the past few days:

My Wake Up Today

What a great wake up I had today. All three kids jumped me in bed. Carly and Andrew were bright eyed and excited and ready for school and Bradley, although up earlier than usual was snappy and smiley and cooing "hayadad, hayadad" in an excited fashion. I had a great sleep and am sporting some sun-tanned knees from sitting outside yesterday. I hope to repeat the experience today sans burn. It's fair to say that so far, today is a good day.

Mothers Day!

Here's what Mothers day looked like for us: I had a decent day with more activity than ever. Brunch was the first order of business with both families turning up for a sizable spread. It's rare to have all of us in one place so that meal this morning was special.

Following brunch I made it upstairs for the first time in a few days to have a shower. We had a couple of mishaps on the way but no permanent damage was done and now I'm clean and happy. With the good weather, all the cousins played outside with the exception of Brad who spent time going in and out and playing at toys. We also welcomed many visitors and I even made it out on the deck again for some sun.

All in all a good great day.

Out-Of-Towners

A portion of the regular cast of characters hanging out with the out-of-towners last night.

Something is Right

Something is right. I woke up this morning feeling great. I mean I still can't feel my legs and I have some pain and I'm still a sickly shade of yellow BUT something is right and it feels great.

Last night was my first night in the rental hospital bed we have set up here so perhaps that has something to do with it or maybe it's something else? But either way, lets just say,
something is right.

Got outside today

I also got to try out my new bed. We rented a hospital bed that fits really nicely on the main floor so I don't have to use the stairs. Of course it's not the ideal situation but it allows for flexibility on sleeping arrangements.

Home Now

I'm home now after a trying week in Hospital. My pain is mostly under control but this ship needs more than just that to keep on course or get on course or whatever crappy analogy you want to use. It's overwhelmed and out of its depth trying to manage all this cancer. But home is a magical place where it all seems a little better. Hopefully I can stay a while amongst my fellow muggles here and recharge before the next battle.

Some Pictures

Unit 47 - Palliative Care

Finally feeling a little like writing an update after a few days of feeling like hell.

I'm in the hospital and have been for a week or so. It seems my body is dealing with an overwhelming onslaught of crap from my cancer. There has been lots of spread to areas that are not good (is any area good?) which means pain and lots of other unwanted symptoms. I seem to have some of those in control while others not so much. I'm dealing with diabetes and pain and liver stress and tumours in the liver and lungs and brain and pancreas and on top of my kidney. Some of theses things are causing problems but some are not but the picture they all paint is not a good one. The plan is to get home on a pass maybe this weekend and then get home on a more permanent basis early next week. History has taught me that this is just a plan and plans will change so I suppose this goes more in the "hope" category.

The kids came up last night for a visit and to hang out on the unit. They were here for 3 or 4 hours and had a blast. The recreation/family education person Tracy helped do some teaching with them on the palliative end of things while doing crafts and painting toes and playing games. It was a great time for them and a learning experience for all.

So thats where things are at as of today. A turn for the worse is the phrase you're looking for. I'm on a beautiful unit here and am still enjoying the good times hanging out with my family and friends here. It's tiring at times but good. Sorry as always for so many non replies via text or email but thanks to all of you. I will update again as I can.

Trying

I'm trying to find the energy to write an update but it just isn't happening. I'm tired and in pain and immobile. What else can I say. Cancer sucks.
Dan

South Calgary Health Campus

I had a couple of good outings today. Well, if you can consider going for a CT scan a good outing. Nancy gave me a ride down to the South Calgary Health Campus for yet another zap with radiation to see the status of things going on inside this dude.

That new South Calgary hospital is sure a great spot. Everything from the parkade (huge, underground, well signed) to the hallways (wide, bright well signed), to the washrooms (bright, well equipped for people of all needs) to the treatment areas (big and bright) are well thought out and designed with purpose. My favourite part though was all the seating in the hallways, booths and tables and comfy chairs. I managed to get a good picture of Nancy hanging out having a coffee after the scan. I'll put some results up after I get them sometime next week.

Warm Weather = Trip Outside

Today has been great. The weather here in Calgary has been fantabulous (think 19 degrees and sunny!) so I ventured outside for a walk, twice. I made it to the end of my block and around the corner both times which is way farther than I've made it in the past. Actually since my surgery the only walking I've done has been inside the house or the hospital so today's effort was vastly superior to anything attempted in the past. My mum took a picture so there is some proof that this actually happened...

Slower Than You Might Prefer

stealing my walker

peek-a-boo!

The Incision (those stickers are fentanyl patches)

Standing up without holding onto anything. Next up: walking

That seems to be the theme of the week around here. Slower than you might prefer. We started the week with a long but respectable list of things to accomplish and, sitting here on Saturday afternoon, I seem to have ticked off a bare few items. On the plus side, my mobility has improved, though only a little bit. I'm not dancing and running but getting up and around is easier and my confidence is improving. It's still a supreme effort to go up and down stairs, get to the bathroom and stand up long enough to do anything in the kitchen. Relying on other people to fetch and carry is also supremely frustrating.

On the medical front, I did get to see Dr. Lupichuck but the meeting resolved little. We agreed to book a chest-abdomen-pelvis CT scan ASAP (as of yesterday pm still not done) which should direct us in the next course of treatment. Now the earliest that can be done is Monday.

I am booked to see home care on Monday afternoon. They are the ones that come to inspect your home to see what additional apparatus I might need to make day-to-day living a little easier. Things like handles in the bathroom, raised toilet seat, seat in the shower. Since I've been home more than a week already I've had time to figure lots of those things out on my own. Perhaps though she might be able to show me the best options or the least expensive options because it feels like we are running at this thing blind some days.

I am also on a wait list to see a specialty physiotherapy clinic that deals in nerve pain. I haven't heard a peep from them yet about an assessment and again hopefully that happens at the beginning of the coming week. Luckily my physio friend Heather is looking out for me and has me doing lots of exercises already to maintain some tone in my legs so that when the feeling comes back I can go straight back to my ultra marathon training.

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.

An Afternoon and Evening in Banff

On Thursday we headed out to the Banff Springs for the day to enjoy a little tobogganing and warm weather (-1C!) after a few weeks of deep freeze. We met up with the Carters and had a good time sliding, then headed off to the hot springs for a dip. We followed that up with a really nice supper at the Old Spaghetti factory (awesomely kid friendly). Bradley was a angel given that he missed his afternoon nap and we didn't get home until about 9:45. Banff is so close but we don't often make the trip. We'll have to do this kind of thing more often. Here are a few pictures...