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MS updates!!!

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.

Settled in on the 12th floor...

We pulled away from home today and I pressed play on the car stereo. The album “Doolittle” by the Pixies got us the first 45 minutes down the highway. Allison was pretty upset. If things go as planned she will not be home to see Cassidy graduate or help her pack to go off to university. As parents we have done a pretty good job of being there for our girls as they have grown up. Not that we feel that both kids in university means we are done our parenting job, however we always thought we’d be there for all the milestones before they headed out on their own. 

Both girls have been home the last week or so. Caitlyn has been going the extra mile to come home from Peterborough and spend time with mom and I before we head to Ottawa. The community has been super supportive. We have neighbours and friends who will be taking care of the yard and staying with Cassidy. Food is being brought by the house and there is no shortage of love and support. 

I had a great weekend myself. Friday night I met up with some of my favourite people for drinks and a social hour and on Saturday the band played in Toronto at one of the last shows for some time. Great to see friends and share what’s going on with everything.

On Sunday my older sister Paula, and her family came for an Easter visit.  This gave me an excuse to indulge in another of my favourite things...cooking turkey dinner.  Lucky for me I remembered to pick up a few bottles of Newfoundland Savoury last time I was home.  Mmmmmm... 

Last weeks trip to Ottawa was pretty much a whirlwind. The meeting with the team at the hospital helped us to understand the first 12 days or so of the treatment. I am not a scientist and am sure the doctors involved understand the complex terminology. For the purpose of this blog I will keep things simple - as I understand them. This first part is a dose of chemo followed by a treatment to stimulate the growth of Allison’s bone marrow. This can be quite painful as the marrow creates pressure from inside the bones. Once her system floods with stem cells they harvest the cells, clean them, removing any damaged or compromised cells. These clean and pure stem cells are then frozen. At this point we have a break of time where we monitor Allison to see and treat any effects of her first round of chemo and the treatment for stimulated marrow growth. More details to follow as it happens. 

We are settled into Ottawa now. High above the ground on the 12th floor of a 14 storey apartment building. I have been messing with the thermostat all day. Even with the cool air on it is still 81 degrees here and I have to open the window to remove the claustrophobic air.  Folks in the business office are extremely helpful. Only took five trips to the car to unload everything. 

Here we go folks. Welcome along. Cheers. 

Sometimes it’s hairy around here

Emotion alert!  From time to time I will simply mention my state of mind. These are not cries for help or need for pity or hugs. Just a simple state of mind. 

I’ve been so concerned in comforting Allison that she will be ok when missing the dogs that I am just now recognizing that I am going to miss the dogs myself. The weight of everything is crushing. For two days I have simply been angry.  Waking up mad, brooding all day and going to bed the same. I’m sure it is just part of the process. Onwards. Tomorrow is another day. 

The moon looks almost full out of the 9th floor window of our apartment in Ottawa. I can hear the cars below. Haven’t heard city noise since I moved back to the country 19 years ago. We are here for tonight and tomorrow for our pre-transplant meeting. 8:30 AM. Not bad for Allison who is used to such hours. Not so much for me. Eyes will be held open with sugar and caffeine.  We are both excited for this appointment. This is where they will tell us what to expect over the first half of the procedure. Lots of questions will be answered tomorrow.

 

Today we stopped by www.caralynswigs.com to get started on Allison’s hairless preparation. We picked a wig which suited her and set a date for Allison to come back between chemo phase #1 and stem cell harvesting. This follow-up appointment is to ‘shave’ her head before the hair decides to fall out in clumps. There are so many scary and uncomfortable parts to this trip but taken slowly they are manageable. Allison was at first very emotional about losing her hair but quickly warmed up to the idea as she considered the big picture. 

 On a side note. I have been reading through all the messages that continue to roll in. As a family we have read through them and they are all so incredibly important. You have all given us such great stories and words of encouragement. I hope you will feel comfortable enough to continue leaving messages as this blog grows. 

 

Thanks

Getting through the list and commentary on treatments...

So we are down to eight days till departure.  We have accomplished so much in the last two weeks.  Uprooting our lives is not easy, but we are getting there.  Allison is done with school for at least 16 months and I have scratched most of my schedule clear for the next 6 months and will assess in the fall where things might go regarding touring and shows.  

Lots of little details; winter tires removed from cars, arrangements made for our daughters while we are away, taxes, runs to Costco, yard maintenance and spring clean is organized, wig fitting, sorted a portable studio for the apartment, OSAP, arranged PSW for Ottawa, set up food delivery, followed up with therapists and naturopath, booked flights for a few Watchmen shows, arranged gear to be in cities when it is needed, Will and Power of Attorney, dentist, new eye glasses, sorted out Cassidy’s prom and grad, dogs to vet, updated heart worm, flea and tick and so many other details… and we have not started packing yet…

 

We just finished up a meeting with a representative from DoTERRA who dropped off a bunch of smelly stuff for Allison. As well they have a great antibacterial soap and a hand spray for me to carry with me during my travels over the next few months.

Do we believe Aromatherapy?  Do we believe in Naturopathic medicine?  Hell ya!  Now that being said, we have allowed room in our lives for science based medicine and nature based medicine.  Over the last four years we have tried so many different options.  From the science of chemotherapy to energy healers who sat quietly by the bed while Allison slept.  In all honesty I don’t understand a lot of this but we have remained open.  

I can say from my point of view and with some insight into Allison’s journey: 

Medicine is science and tends to work.  

Meditation and mindfulness works.  

Food works.  

Positivity works.  

Exercise is great.  

I hate needles but acupuncture.

Music has healing powers.

Tapping is working for Allison.

Osteopath is very helpful.

Cannibis is an incredible medicine.

Massage feels great and seems to work.

Chiropractors fix immediate problems.

Cupping is interesting and had a great effect for my back.

Aquatherapy is good exercise.

Yoga is all around amazing.

Any people out there looking for a great naturopathic doctor we recommend Teri Jaklin at the Watertown Clinic in Burlington, Ontario.  She is a naturopathic doctor who has MS and is very insightful and helpful with maintaining a healthy body and mind while navigating the world of MS.  http://www.terijaklin.com 

Stay tuned more to come…

 

Thank You All...Go Fund Me goal Reached...

Wow!!! I cannot believe that we reached the Go Fund Me goal of $20,000.  Thank You, Thank You, Thank You…  

When Allison and I began processing this procedure and what was involved, we knew that we were going to need some help financially.  It is one of those strange times where you know you need help, you also know the stress of unexpected major life expenses and the toll it can take.  I personally have been involved with many fundraisers over the years.  From large corporate causes to barn/house fire local events I have contributed and never really given it a second thought.

When you are on the other end it is incredible.  Tough at first to let people know that you are in need, but once you do - wow they step up. The Go Fund Me was one part of a few different fundraising initiatives that are happening. The folks at Allison’s school and church (St.Mary’s) have tied in with the High School Band (CDHS) to organize a Spaghetti Dinner here in Campbellford (Thursday April 25th). As well the local music scene and friends have stepped up to have 6 bands playing at the Legion (Saturday May 10th) as a show of support.  Sideways (local Bar) has added to the mix with a show this weekend featuring Durty Curty and they are helping out as well.  Wow! 

We are super appreciative and as we get closer we realize how much this support has made a huge difference on our positive state of mind.  Thanks to you, we were able to pay the first 6 month lease on the apartment and did not need to stress about.  The number of required items that we never expected is vast.  From Chemo scarves and a wig for Allison to an air purifying system, thermometers, water filtration systems, tens machine for pain and so much more.  We cannot say what a relief it has been to be able to secure these items without the stress of where the money is coming from and when and if it runs out.  

We are ten days away from our move.  Twelve days away from the start of treatment.  The loose ends that we are tucking away before it all begins have been made easier with your help.  Knowing you are there for us, the messages, letters, phone calls and visits to make sure everything is okay - absolutely amazing.  

Thank You All So Much…..

Lists of lists of other lists...

Friday was a big day of outside the house preparations. The girls and I had a fairly substantial list of things to get to prepare Allison’s “Chemo Bag.”  A first for me but it makes sense. Repeated trips to hospital followed by multiple hours of sitting and waiting - and not comfortably we are informed. 

Chemo Bag includes such items as:

Books,Magazines, Lip balm, Water mister for face, Water bottle, Nail conditioner (with nutrients and more), A stuffed animal, Blanket, Candy, Cards, Headphone, iPhone charger etc. 

 

It was good to get out of the house for a bit. We went for sushi at Hockey Sushi on Landsdowne and I think it is important for the girls to be a part of this process without it being overwhelming or invasive on their own lives. They seem to be taking everything in stride but then again they are teenagers and are quite adept at hiding feelings. 

Speaking of feelings...  My wife thrives on organizing, scheduling, preparing and list making. I have a much more “go with the flow” attitude.  Over the last 25 years I have learned to live with Allison’s need to organize and she has adapted to my disorganized chaos. Together is works. 

But wow!  She is really on fire with the lists recently. For the last ten days or so I have fallen asleep while she is still talking about what has to be done, the most efficient way to do it and as well alternate outcomes or prospective issues. I open my eyes in the morning and there she is, ready to go and ... it picks up right where it left off. We each have ways of coping.  I compartmentalize, play music and use distraction. Allison uses organization. It can be quite funny to see. 

All joking aside.  We are getting more and more used to what is happening in our lives. We are hopeful and excited. I will get into it more in a later post but I have to say that the support we are feeling has been incredible. Friends and family have been offering such great support and the folks in Campbellford have been exceptionally gracious. I have been approached while out in the community by so many folks (many of whom I have not met before) who offer good thoughts and share stories of how Allison (through teaching) or I (through music and community involvement) have been a part of their life.  After twenty years it is really feeling like the family has settled into the realm of being considered locals. It is a nice feeling. 

Ok off to tackle more lists and listen to Allison fill my mind with how to approach each and every detail. Sometimes I think she forgets I am deaf in my right ear. Depending on how I’m sitting it can work in my favour. Lol. Cheers. 

Stem Cell Bone Marrow Transplant for my wife Allison Edwards

Ok, so here we go. We have let the proverbial cat out of the bag this week and brought our friends, family and folks we know from my music world up to speed on the status of Allison's MS.  I have been a fan of social media since the early 90's message boards.  I have some friends whom I have never met in real life but have had lasting relationships for decades through this virtual reality we call the internet.  I have shared every aspect of my music career and as well have let you in on what is happening in my personal life (within reason).  During this next year my family and I will be going through something brand new for us.  The Stem Cell Bone Marrow transplant that my wife is about to undergo brings a lot of fear and hope both in waves depending on the hour.  It is important for me to clear a lot of my schedule from touring during this time.  This is tough as the new record is being received very well and the band is sounding pretty darn good I must admit.  However, I will still be picking up as many shows as is possible but the focus right now is the treatment and well being of my wife.  

 

So here we go... Welcome aboard and feel free to comment and interact.

Cheers

Ken

13 days before we told anybody anything...

There was a period of almost two weeks between us meeting with the doctors when we were being considered for the Stem Cell Bone Marow Transplant and the time we found out we were accepted to the treatment.  During this time I kept some notes in my phone messages.  Here is how that all went down...

To Hell and Back 

Day one was a Friday and it rained on and off through the entire drive to Ottawa from Campbellford.  My driver side wiper had a strange bend in it and when it came back across the window it made a horrid grinding sound on the glass. I have to remember to replace it. 

The three hour drive to Ottawa takes a lot of effort for my wife - especially on days when we make the return trip. I expect she will almost need to be carried from the car back to bed when we return later tonight. She has MS and her fatigue makes long trips especially hard to deal with.

We met today with a ‘fellow’ neurologist and as well with Dr.Atkins who is at the forefront of treatment for severe aggressive MS patients using stem cell transplants. This option terrifies us, but at the same time with Allison’s MS being as aggressive as it is, there seems like there is little choice. 

We spent the day listening to the doctors information and trying to focus our questions in a somewhat manageable fashion. In a nutshell the Stem Cell Bone Marrow Transplant takes us on a six month journey followed by a possible 12-18 months of complications and recovery. We will have to address relocating to ottawa for the time and as well with Cassidy (our youngest daughter) not in university yet there are several logistical concerns. As we leave the hospital our minds are scrambled and we are both exhausted.

We stopped at a new Vietnamese restaurant we found in Nepean and drove home. Tired and wasted after a long day. The freshness of the food was much needed.

Day Two. 

Had breakfast with Neil (close friend) and discussed the next year or so. He is incredibly supportive and will be a great help in keeping the lawn mowed and as well he will be a huge support for me during this process. Afterwards, I called my dad and filled him in. We have a somewhat distant relationship and I got what I expected from the conversation. Following this, I called my surrogate mom (Faigie) for a conversation filled with high and low emotions. She is hopeful and happy we are getting the treatment but also worried about complications and outcome. Further conversations with my sister and Joey from the band have left me feeling a bit better. Joey is supportive of a band fundraiser and this will take a lot of stress off of the family here. 

Speaking the words and expressing my thoughts and fears is a great thing. I have always believed that thoughts in your mind become different when we use language to convey them. A thought can reek havoc for days weeks or years, but as soon as you use language to put it on paper or vocalize it - something changes. Positive thoughts become brighter and somehow fears and anxieties can become weaker and easier to deal with. Tired now. Almost time to make some dinner. Allison’s PSW is here and is making Allison some breakfast for the week. 

Day Three

Day three was Irish Green Day or St.Paddy’s as it is commonly known. Woke up after a bad night of sleeping and passed some time making pancakes before heading out the local pub to jam a couple of hours of fiddle tunes. Music is the one thing that clears my mind so I find I’m playing guitar a lot. 

Day Four

Day four is a Monday. Slept terrible on Sunday night. Nightmares of wars and battles and not being able to protect my family while trying to stay alive. Telling I guess.  Classic textbook behaviour. 

Today, we had to go into Peterborough for some appointments and to pick up our eldest daughter. Allison was having a bad morning and I have to admit I was dragging my tired ass out of bed, brushing my teeth and heading out the door to accompany her. This was followed by sleeps in the parking lot during her appointments and then came home to find myself sleeping that afternoon away. 

I am not sure what is wrong but my left eye hurts intensely. My head hurts and I am more tired that I can remember. Coping mechanism I guess. We told the kids before dinner and they reacted emotionally, but well. They are big science nerds so they understood the process more than I did at first. It’s 10 pm now and we are all sitting on the bed in our house having family time like we have done for years. Laughing in nice. Head hurts. I hope I can sleep tonight. 

Day Five

Day five is Tuesday. We have not heard anything back from the team in Ottawa and do not expect to for another few weeks. I have to drive Caitlyn back to Peterborough and then head into Toronto for a lecture at Seneca College. The traffic makes me mad, the drivers make me mad, the campus makes me mad, the instructions to the room are misleading and incorrect. I should be better at managing this but I feel like exploding with rage. I’m trying deep breathing. I’m trying to control myself. I feel so lost... 

I usually work on things that are happening in the future. Booking shows, flights hotels and such. It keeps me busy with my days and when I am playing music I am in the moment. I feel so much like i am floating in space with all of this uncertainty and loose timeframe of 6 months to 2 years worth no start date set yet. FUCK. There is so little in my control. Feel like I am crawling out of my skin and nothing has even started yet. This is going to be a long hard road.  

Day 11. 

I sit and wait in the hospital waiting room as Allison goes in for her EKG. This is one of two tests that have to come clear for her to finalize her position in the stem cell transplant program. We have moved away from fear. There are hundreds of details about this procedure and what can go wrong. Dealing with the possibility of all of them is overwhelming. We have learned to take our journey with MS one day at a time and we must extend this to the procedure as well. Now that we have moved past the mountain of fear we can see how exciting the future may be. 

For the first time in many years we have hope. Not hope for a recovery, but hope for a future as we once had long ago before MS came to live with us. The next few years will be tough. But we will get through knowing that there is a better end on the way. I think we had forgotten a bit about living. We have gotten caught up in the day to day issues of feeding, waking, sleeping. Bed. Couch. Kitchen. Repeat. Now we have a chance at something more. Of course now that we are excited for this we also have the trepidation that something might stop us from completing this process. Again hopeful and a little scared. 

We have officially told the people closest to us. Our family friends and doctors. All show extreme support. A lot of them ask about me. I know they mean well but it annoys me for some reason. All the “oh my ken you are gonna be ok during such a hard time?” Make sure you have a therapist. Make sure you are taking care of yourself. It simply annoys me. I’ll be fine. I say that now just as an intention. In all honestly it feels like a huge battle. As well our lives have been turned so upside down by this disease I don’t know what it will be like to be somewhat free of it.

Day 13

Today I posted on FB about what we are about to face and the response has been emotional. Hundreds of people reaching out and offering support. The outpouring of love is incredible. Friends I had lost touch with for years and years have extended best wishes. Tonight at the pub a bunch of people came out and offered support for what was about to happen. 

I am sad for what is happening to my wife. I am sad for her fears and pain. Last night she called out to me and I had to hold her to calm her down. She was shaking and crying and obsessing with dates and details. 

Today was a different story.  We spoke with the scheduling nurse and she went through the dates and details which allowed us to get a map in our heads. This proved to be a huge relief. But still. scared and hopeful. 

 

The Original FaceBook Message...

If I had a Time Machine I would have gone back a week and started this blog from the inception of our new reality.  However, this I cannot do but... Last week I posted this on FB as the 'coming out' message...

MS SUCKS!!! I have been holding my breath for some time. Today I am trying to catch my breath. Anxiety, fear and hope for a positive future are all running around in my mind.

As most of you know, my wife Allison was diagnosed with MS almost four years ago. The first year was spent dealing with understanding the disease and learning, through therapy, to deal with the stresses and realities of living with Multiple Sclerosis. 

Two years ago, my wife’s relapses became more frequent. We entered into a second phase of treatment which included chemotherapy, but were not seeing much in the way of positive results. Slowly my wife became weaker and more disabled as we moved from needing assistance while walking, to a cane, a crutch, two crutches, a walker and for any stretch of distance (a mall or groceries) a wheelchair. The nerve pain that my wife deals with daily would cripple me if I had it for a hour. The fatigue, pain and exhaustion has left her bed/couch bound for the better part of the last 18 months. 

Our lives slipped into this regular day to day routine with no indication of getting better. Downward seems to be the expected reality. Allison loves teaching and has tried her best to maintain a few days a week when possible, but that has been very difficult. I have changed my touring schedule several times to accommodate being home where I am needed. This is our life. This is our normal… until ten days ago… 

Our neurologist in Ottawa recommended us to the team who has been having success with the Stem Cell Bone Marrow Transplant. We just found out today that it is official. We have to relocate to Ottawa for 6 months up to a year, while she has this treatment. There are terrifying details that come with this procedure. There are only 8 a year done and we feel like we have won the most horrific lottery in the world. We are so excited and scared for this procedure, but for the first time in a while we have hope of reigning in this beast of a disease and in a few years we are encouraged that we will be able to look back on this time and know that we did the right thing. 

The next year is going to be some of the hardest times we have ever faced. We have a great medical team behind us and the wonderful support of friends and family. 

During this time I will be less active with tour dates. I had hoped with the successful response to “A Good Dog Is Lost” to be touring a lot more this year, but it appears it is not in the cards. I will be doing Watchmen and solo shows as much as I can, however priority is getting through this time and being there for Allison and the girls. 

For friends who have been there for me this last 2 years I want to thank you for your support and generous ability to listen to me confide during some of my darkest times. You know who you are…

Wish us luck.

Ken and Allison

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