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MS updates!!!

Learning from our children

We were extremely lucky to have both of the girls visit us this weekend. Allison had not seen them since we left and it was good for the family soul for us all to be together. We had some great times and ate some wonderful food.



On Friday night the girls and I went to the movies. I would usually say that I took the girls out for the night as this fits the parent child model. However, upon reflection I have to say that the girls took me out for the night.

I fully admit that during dinner prep and cleanup I was a bit of a jerk. Just being out of sorts and perhaps a bit over sensitive to things. Caitlyn drove to the cinema and made it clear at one point that she “knew how to drive.” At one point Cassidy looked me in the eyes and said “take a deep breath”, I did and then she said “now take another.” I knew at this point that my children were both letting me know my state of mind. Even if I did not.


Day by day I am going through this process with Allison and it is easy to get lost in the journey and as well fight the knowledge that “this is really tough and perhaps I am not doing fine.” Prior to the movies I had to have some words with both of my children. I explained that things here were stressful. I apologized for my behaviour and we switched gears to enjoy the rest of the night.

Learning from our children is a gift that I have been keenly aware of for a long time. How to play. How to relax. How to enjoy things like a child. But now that my girls are young adults it is getting clearer that trying to shield them from “adult” issues is not beneficial for anybody. They are growing up and I can lean on them as they have me in the past. 

This weekend the girls game for a visit and they took me out for a much needed night. Love you both so much.


Yesterday Allison started the next course of pills with a high dose of anti-seizure meds which will continue for a the week ahead leading to the terrifying 8 days of chemotherapy starting this Saturday.  Today her mobility is reacting poorly to the meds and we are reminded that this break has been nice, however there are some bumpy roads ahead.  Hold on folks...

Stem Cell Collection - MS SUCKS in Campbellford and Hair Again!!!

This is a long post.  Last week was incredibly busy and I did keep Social Media Updates flowing but the blogging process takes a little more time and last week was too jam packed full of excitement to get it all out.  Wow where do I start? 

We had been told to come back to the hospital on Wednesday bright and early.  The safe bet was that at this time Allison would be ‘perfect for the harvest.’  (sounded cooler in my head than on paper)  They were right and by mid-morning they were prepping Allison and adjusting levers and buttons on a machine that was ‘somewhat kind of’ but ‘not really anything like’ what I had expected.  Took a while to find a vein, but they did and it all began.

NURSES WEEK… I must take a moment to say a few words about the nurses we have encountered so far.  AMAZING!!! I can’t believe how nice, smart, completely confident, funny and perfect they have all been.  From making us feel welcome and comfortable to the intense medical duties they perform.  I can’t say enough… thanks

8 1/2 hours passed and finally they had collected what they hoped would be enough cells for the transplant, which is to come later down the road.  We packed up and left for the apartment.  We were both completely drained when we returned home.  At just before midnight we received a call from the head transplant nurse informing us that the count was in and they had a fantastic number of cells and we would not have to return for day two of collection.  We slept, hard.

Fundraiser MS SUCKS!!!

On Friday I had the pleasure of returning home to Campbellford to check in on things at the house and as well to attend the MS SUCKS!!! Benefit at the Campbellford Legion Branch 103.  I took the girls out for dinner after soundcheck and had some fine grub at Sideways before heading back to the venue for the night.  So nice to catch up face to face with the kids.  We are so not used to being away from them.

Ok so here is a moment where I need to reach out and say thanks to a whole bunch of people.  This fundraiser took so much work to put together and I had nothing to do with it at all. Thanks to the good folk who contributed their time and energy. 

Ray Kies - The amazing host “Ray On TheRadio”(CKOL) who coordinated all the bands

Barb Begbie - organized all the food to keep people’s bellies full

Sherry Foster - arranged prizes from local businesses and ran the silent auction

Lee Ann Burlie - arranged prizes from local businesses and ran the silent auction

Bill Davenport - arranged Legion and provided backline and band technical ryders

Barry Twohig - stage manager

Dave Hirst - sound production

Legion bartenders

Legion ladies who came in to prepare Nachos for the masses

Family help on kitchen and cleanup duty also 50/50 - Caitlyn and Cassidy Tizzard, Maddy, Faith, Rachael Begbie and extended family.

 

 

 

So nice to get to sing with my daughters...

The Bands:

The Raggedy Andys

The Blue Eyed Dogs

Music For Goats 

The Janet Jeffery Band

Jane Archer and the Reactionaries

Tastes Like Chicken

The Variety Show Players made a last minute appearance

The Legion Branch 103 - Ivan

And to every business (I am awaiting a complete list) who contributed to the evening both Allison and myself are so incredibly appreciative.  Thank you!    

And to all our friends and family who came out to share in this evening of fun times and great music, once again we feel so much a part of this community and are so looking forward to coming back from all of this stronger and better able to contribute back again the way you all have for us.

Wow.   What a night.  The bands and people.  Incredible and I apologize once more for being so weird about not shaking hands or hugging.  Just part of what it is right now… germs and all. 

Hair Again

This one is going to be mostly pictorial… The chemo from when we started is showing its effects.  We knew it was coming.  We ordered a wig.  We had an appointment for a head shaving.  But were we really ready?  Halfway I’d say.  There were some tears but we are doing well and Allison is being so good with me taking pics of these horrible things.  In the moment she grumbles a bit but afterwards is curious to see and I think this documenting is somehow good for us.

This is how it begins...

It just kinda slides off the head...

and then it gets a little thinner...

there is hair everywhere...

time to try on one of the new hats...

a day at the spa... sort of

feeling fresh...

let's get this wig sorted...

feels weird...

a new girl...

first time out in public in weeks...

 

 

 

Where there is smoke... actually not true in this case at all.

The hospital room smells sterile and the hum from machinery remains constant at a low level. White boxes with labels I can’t read and large machines which remind me of 2” Ampex reel to reel tape machines are settled in between the two beds. Tubes, clear bags and monitors remain in the field of vision no matter which direction I turn my head. There is a window, but the curtains are drawn due to the heat and blinding early morning sunlight. 
For fifty years I have had time to imagine what I would be doing on my fiftieth birthday. In all the scenarios the scene pictured above was never considered. But here I am. With my wife Allison in the bed beside my chair. Blood has been drawn and we now have a two hour wait to find out if her stem cells have “burst” out of her bone marrow and into her blood stream. If this is the case, we then hook up to a dialysis type machine and for 6 hours or so her blood will be removed from her body, the stem cells would be collected and then blood sent back through the other arm once again. We are hopeful that the news in a few hours is positive and that we do not need to repeat this process again tomorrow. It would be a great birthday gift to have this go smoothly today. 
Two hours later we are back at our apartment. Allison’s white blood cell count is still non existent so there is no way for them to harvest today. I thought it wise to lay my head down for a pre-noon nap, seeing as I had only five hours sleep and was pretty groggy. Within moments of dozing off I was startled awake by the building fire alarm.  I got some clothes back on Allison. Shoes and a sweater not cooperating at all is I fumbled through the process. 
Once Allison was comfortably settled into her wheelchair we headed into the hallway of the 12th floor.  Around the corner stood two middle aged ladies discussing why the elevator was not working. 
I couldn't stop to take a selfie but this artist rendering pretty much nails it!!!
And then it hit me. Allison can’t walk and we are on the 12th floor. No panic. I wheeled her chair to the door to the stairs and got her on my back. It was not as tough as I had briefly imagined. I guess gravity does a lot of the work, all I had to do was put one foot in front of the other. Not too good for her health, but I appreciated all the weight she has recently lost.  When we got to the ground floor I had worked up a nice layer of sweat. One of the staff brought us a few bottles of water and we waited the ordeal out. The firemen cleared the building but the elevators took a few hours to reset. There was no way I could carry her up 12 flights so we hunkered down for the afternoon in a room on the second floor. 
Let’s see what tomorrow brings eh?
We are still positive and we are still eating healthy.  Allison hair was becoming a bit unmanageable so I took the scissors to it for ease of getting in and out of a ponytail.  Next week she has an appointment to have her head shaved - why bother waiting.

First week impressions...

One week into our Ottawa residency and wow what a trip! This week had some extreme highs and lows as we had anticipated. We quickly overcame the change of housing as Allison had done some crazy preparations in the weeks before leaving home. The apartment is nice. Has a nice open kitchen and a small space for me to set up a mobile recording area (demoing some new tunes which is exciting). We had to grab a bed topper as the mattress was more firm that we are used to. Otherwise most everything was as perfect as it could be. 


It took most of the week and several shopping trips to get the place outfitted with our needs. Can openers, groceries and new light bulbs to replace the Uber bright LED bulbs they provide. So many basics you don't think about when you have been in a home for 20 years.

We worked through a cleaning and maintainable regime and set the white board up with a schedule of meds and needs.


Recap of treatment. Allison had chemo last week. Very intense and had to be checked into the hospital for 24 hours. Process went well with none of the possible side effects. Great news. 
Day one after chemo Allison started her Filgrastim - 2 injections a day to stimulate bone marrow production and increase stem cells in blood stream. This goes on for ten days. 

The day after chemo Allison was crazy mad with energy. She perhaps slept 2 hours on Saturday night as she was wired and planning and writing notes to friends and planning and writing and planning and writing. A bit manic in fact. It was quite funny and we had some much needed laughter during this time.

 

Sunday was equally emotional but with Allison crying in and off throughout the day with no special reason. Allison has always been a crier. I got used to it early on. In fact in the beginning I was so unfamiliar with big displays of tears that it really freaked me out for the first few years. After which I became accustomed to her moments of crying and accepted that it was a part of who she was. Sunday was a crazy day for tears. Nothing in particular but just a general cry for happy, funny or sad.  Those of you who know Allison understand that she is a hand talker.

Monday through Friday was a consistent decline as the pain set in. By the end of the week Allison has given in to the Codeine and accepted it as part of our regime. The codeine mixed with her MS debilitation has left her pretty out of it and immobile. Most of the days now are spent managing pain and helping her from bed to couch to washroom and back again. 
We are aware this is the drill. We are ready for it. It is all leading to a much better place. 

A few words from Allison herself...

Allison has a few close friends (The Ladies) who she shares her thoughts with.  I know this blog is mostly from my perspective but every now and then Allison lets me steal some of her words… here is what she has been chatting about recently…

Every morning I do a meditation/tapping routine and part of what I say is going to be my plan going forward……

My goal is to only do things that fit into one of these areas each day...

“Today I choose faith

I choose joy

I choose laughter

I choose love

Today I choose

What do I want this day to be like?”

 

So I’m going to just focus on things that will improve my health. 

1)Tracking things the hospital needs me to focus on each day (temperature 5x a day, liquid intake, pain, nausea etc. And of course it wouldn’t be a list without urine and BM tracking).

2)Right now I am in chemo/needle symptom control, so doing things like heating pads, meditation, resting, eating well. Today I’m specifically dealing with a nausea and pain. 

3)I have used an essential oil diffuser for a long time and I have recently discovered more and more things I like about essential oil’s, this makes me excited so I’m going to explore this option more.

4)Updating you ladies-Well you are firmly still on my list, I actually smile and laugh out loud when I am talking into my phone. Maybe not a lot of laughing today but I’ll get back there soon. As I said before it’s a therapeutic way of me getting my thoughts down, and why not share them with the ones I love. But of course if this gets too much I’ll back away from this too!

5)My “alternative” treatment team, I work with a therapist, naturopath, essential oil expert (all on line) and here in Ottawa we are working with an amazing nutritionist. This is quite an exciting new discovery, she runs a gluten free, vegan restaurant but also consults and is working individually with us, here is her website-https://simplyrawexpress.com/

I chose to do these alternative things because they most importantly make me feel good but even more it is something that I can do that is within my control. I know the medical (Chemo/transplant) protocols need to be followed and I’m doing nothing that interferes with that only things to compliment it! 

5)mindfulness-only one word that has truly changed my outlook, by the end of our journey through this treatment ladies, you will believe in it too!

And as I have already started doing (which I am pretty proud I finally asked for real help) I will continue to reach out to you all individually when and how you can support me. I already  have some ideas so look out for personalized texts over the next week or so. 

But ladies my hope is very strong and not wavering, I will get through this and my MS will be halted! 

I will leave you with....every night before I go to sleep I visualize my immune system starting from scratch and recreating itself without MS.

 

The Disgusting Six Foot Bubble...

Great news!!! I have not had heartburn in about ten days, which is huge because Tums and Rolaids are not unusual on a almost daily basis.  Again I would like to shed light on the wonders of essential oil - a DoTerra product called Zen Gest came into my life about ten days ago.  I love the scent and have been huffing it like a paint addict in alleyway from some NY City street gang movie set in the the 80’s.  As well I rub a bit on my chest from time to time.  Apparently this Zen Gest is perfectly targeted for heartburn … Then again… I have not had Tim Horton’s in ten days.  Medicine versus poison (figurative language of course - I know they’re watching me ever since my bagel post a few weeks ago).

So this brings me to todays random bits of information which I have been calling a blog.  Allison and I have been working with a naturopath and other food specialists in order to get a better understanding of how to help Allison using food.  Some Neurologist’s would argue, “You can’t heal MS with food.”  And we appreciate both sides of the argument.  We decided long ago (four years or so) to embrace both the Naturopathic/Holistic and the Medical/Pharmacutical side of things.  There have been times when during medical treatments we swayed a little closer to that field of science and in the spaces between would try to maintain good health through other non-medical approaches.

Today we are using both sides to the fullest.  Meal preparation has changed from how we choose food, how we clean, prepare and accept with a positive state of mind (yes mindfulness plays a part here as well).

Cleaning - Now that Allison’s immune system is compromised we have to be careful about all sorts of germs and such.  Simple coughs can become dangerous easily and we have been told to imagine each person walking around in a six foot bubble which is filled with their germs.  That’s kinda gross and pretty darn scary when you're immune system is weakened or gone completely (this is the end goal for Allison’s procedure, to entirely erase the immune system and rebuild it from scratch using her own stem cells).  

Ok Purell, Lysol, antibacterial disinfectant and of course products from DoTerra are in our arsenal.  I personally find myself wiping my hands every three to five minutes when I am standing and cooking or such (I have had a sniffle and have to be careful).  If I am sitting and go to get up I do a complete hand wash and spray of DoTerra (On Guard) or Lysol air spray on the area I was sitting / often even spraying down my clothes.  If I happen to nap on the couch I spray the pillow after use… this goes on and on.  I won’t get into the multi-step procedure we have developed for going to the bathroom.  Regardless, I have never been so clean in all my life.  My teenage punk rock self would laugh and call me crazy, “…its only dirt,” I can hear myself saying.  But for now it is not about me and my unconventional belief in how long you can wear a pair of jeans for before washing.  For now it is about being safe and germ free.

With meal prep I take all items out of bags.  Put bags/packaging in garbage an proceed to wash down the kitchen area where I just had everything.  Then all washable food items get sprayed with a 3% hydrogen peroxide (food grade) spray which I keep on the counter.  Then everything is washed and dried with a clean paper towel.  From there is it a systematic series of events while I cut, cook, and clean in between every step.  

By the way I do have OCD and have been clinically diagnosed and treated for this now for twenty years.  I am finally able to embrace my neurotic behaviour for a good reason.

 

 

Strangeways, Here We Come...

This is gonna be weird. I know it is for me.  I have just been out walking around this strange neighbourhood in Ottawa where I find myself living currently. Weeks away from my 50th birthday in a strange town, walking streets I’ve never been down. Listening to the Smiths for the twentieth time in the last four days. And here is the strange part - I’m loving listening to music. 

I was drawn to music as a teenager as an escape from a life I had little control over, My dad was an alcoholic, my mother a wreck trying to hold it all together. My older sister wanted nothing to do with me as I was an annoying little brother who tagged around everywhere she went. My younger sister was too young to be a real part of my life, aside from the fact that she was a child living under the same roof. I was bullied in school regularly, I was way too tall and skinny for sports, and I guess I was an easy target for teasing.  I grew a thick skin and most people never saw it.

Don’t get me wrong. It was far from all bad. In fact way better than most. Way better than some. There I go again justifying… Regardless, music transported me to a safe place. A place where I could deal with the teenage emotions that were raging around in my somewhat complex life. Music settled it all down. Bands like Pink Floyd, REM, the Smiths, U2, Minor Threat and Husker Du were important artists for me. For years I listened and listened more. The music kept me company on long bus rides around St.John’s.  At home it drowned out the rest of the house.  Then I realized I could play music and be a part of this experience. Then I listened and listened some more. Learned some and learned some more. Started creating and continued creating.  It becalm my life, it became my job, it became my everything… 

Here’s the thing.  Somewhere along the way I stopped listening and getting lost the way I had when I first discovered music. I listened for arrangements, lyrics and production values. I listened for technique and colour. There have been times when I’ve listened and appreciated for a variety of reasons but not the same as what drew me to the music in the first place. I feel inspired and incredibly lucky to remember this special relationship and to find what drew me to music initially. 

Today I am lost once more. Things are messed up - a bit. Not as bad as some. Better than a lot but ... tonight I walked and listened to Morrissey and Marr and the rest of the band and they took me to “that” place. A place I thought I’d forgotten about. A place I haven’t been in a long time. A place that saved me once and all indications lead me to believe that it might be a place that is going to get me through all of this.

Perhaps this remembering will lead to some new material of my own that will be inspired enough to work its way into someone else’s life and give them some comfort.

Community Spaghetti Dinner...

On Thursday night the school where Allison works (St.Mary’s) hosted a fundraiser for the family at our local high school CDHS.  Allison has been teaching in this town for almost 20 years.  She has taught children who are now adults and have kids of their own. 

She has been such a positive influence on so many and they demonstrated this on Thursday.  The CDHS Jazz Band performed and spaghetti was served to all.  Both of our girls went through CDHS and both were involved heavily in the Jazz Band.  It certainly was nice to see the girls getting support from their friends and the school community.  There was a great crowd and we felt the support all the way in Ottawa as people sent us pictures and messages as the evening unfolded. 

pic... above are several students of Allison's from the years gone by who came out for the night...

We cannot find enough words to say thank you to the local community who have rallied around us to help us during this time.  For the event itself we thank all the volunteers, CDHS and St.Mary’s staff, the cooks, cleaners, band, servers, and everybody in between.  Special thanks to Amy-Jo Doherty and Dave Nobel for spearheading the event.

Don't Get Sick, Don't get Sick, DOn't Get sick... oh damn...

Today Allison started her first chemo treatment (Cyclo).  We were all set and ready at the hospital for today; Chemo bag packed, blankets, drinks, lip balm, candy, stuffed animal, books and more.  There is a 4-6 hour infusion followed by monitoring until tomorrow between 11 an 3pm.  The nurses were very pleasant and the rooms nice.  Unfortunately with all the hand washing and disinfecting we have been doing I have developed a sniffle.  I get this a few times a year.  It is not allergies but a short cold which comes in the form of a cough which lasts for about 12-24 hours and a stuffed up nose which hangs around for 3-4 days.  It started on Wednesday and I was not surprised that they did not let me stay on the unit with Allison during this first day in the hospital.  I understand and in fact appreciate the policy, simple virus can be derailing for compromised immune systems and I am fine to stay away. I wish I could be there but this is the cards we have been dealt for today. I know she is in goo hands.

Alison just texted me and she is done with her chemo.  No rash, irritation or Wasabi nose (that's what they call the burning in your sinus that occurs sometimes).  She feels pretty dopey right now and I wish I had more to share on her day but.. I was not there... I can say she is in good spirits and looking forward to coming back to the apartment tomorrow.

We are eating new food and trying to stay healthy.  We met with a company called Simply Raw Express yesterday and started with some juices, salads and soups which will take some getting used to.  I found myself late night munching on a bowl of stuff, really stuff, I am not sure what some of it even was. https://simplyrawexpress.com This too will become a new part of our life.  

 

Never too old to learn a new trick or two...

From Allison... well apparently it only took me 50 years to learn how to apply make up! I attended a Look Good, Feel Better Workshop today. It is a free program run by the Cancer Society. I snuck in, well not really, because I will experience the highs and lows of chemo. 

Anyways they taught us about how to apply wigs, make up, take care of our skin and nails etc. I really enjoyed it and actually applied foundation, blush, concealer, mascara, eyeliner, and lipstick. I have never worn all that in my life. There were tons of cool freebies too! 

Please ignore the crazy amount of gray hair, but figured why dye it because it’s going to be gone soon.

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