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.
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 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 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 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.
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.
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.