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MS updates!!!

Back out of the rabbit hole... strange old world

It is hard to describe. There is a heavy anxiety about going back out into the real world tomorrow. It has been a few months of straight head down focus on Allison, her illness and this crazy rollercoaster we have been riding. The short of it, is that Allison is doing great. Her numbers are coming up (WBC, Platelets, Hemoglobin etc) which is all a sign that things are moving forward as hoped. She is eating and although not putting back on weight yet, she has stopped losing weight and that is good. We are on the way back...

But how do I get back?

I know it might sound silly, however breaking the “Groundhog Day” routine that I have established here in Ottawa seems more difficult than I had imagined. Tomorrow will be the first morning that I won’t get up and drive to my fave bagel shop and then to the hospital for the day. Almost a month has passed since this routine began. Wake, drive, park, go into hospital, help Allison with her daily living, monitor drugs, track effects, monitor pain, track ups and downs, feed, wash, repeat. And I have done this willingly and without reluctance, as weird as it sounds I’ve enjoyed this process and managed to deal with most of the negative with more grace than I’d imagined. Only recently am I starting to see how much mental and emotional energy this requires.

And now...

Allison’s aunt and cousin have arrived. Tomorrow morning I wake and get on the first of eight flights that I will take over the next five days. I will play shows with the Watchmen starting with the Toronto benefit tomorrow night.

I have put on several multi band shows before. As many as 30 bands in a night - and they have all run without a hitch. I guess it is my mental state combined with the social bubble I’ve been living in, but I can’t seem to get my head around everything. All the bands are set, the backline is ordered, the crew are arranged, my gear is all set - but damn I am out of sorts.

Allison gets released from the hospital on Thursday to return to the apartment. There will still be much monitoring with daily and then weekly into monthly visits. Part of me feels like I’ve just run a marathon but don’t get to cross the finish line. I know Allison is in good hands - I guess I’m just conditioned to be the one carrying the weight.

This week I leave my wife in the capable hands of others while I get back into the world to come out and play music for and with you all. Baby steps for her and baby steps for me. Love you all and look forward to seeing you on the road.

Breakthrough Day

Breakthrough day!!! Day Ten Post Transplant - It was expected that somewhere around day 12 to 14 we would see some numbers begin to show for Allison’s White Blood Cell and Neutrophil count. Up to this point Allison’s body is in a state of continuing damage (chemo and other therapies) with no cells to help heal. 

Well today Allison’s count started sprouting up. WBC at 1.3 and Neutrophils at 1.1. These are low numbers, but it does indicate that the transplant has taken hold and is starting to work. From here Allison’s body can begin repairing itself. Long road still ahead. We are not out of the woods, but at least we have the map and a compass.

Hour by Hour, Day by Day

So we are at day 8 - post transplant. The effects of the chemotherapy are still developing and during this time it is extra tough on Allison as she has no immune system to help heal the damage that is happening. 

She has developed significant sores in her mouth and on her tongue and throat. No longer able to talk she has resorted to using a white board to communicate. It is quiet in here. If it wasn’t for the circumstances I’d be tempted to make a husband and wife silence joke - but no, instead I’ll just leave it as a vague reference. 

If I’m not looking at her she knocks on the board - nothing annoying there. Lol. 

We are keeping in good spirits and taking things day by day. We have stopped asking what to expect and how long things will last. It has sunk in that during this time it really is “hour by hour and day by day.” With no immune system there exist many possible turns in the road. Allison is getting some Immuno-Globulin ( sp?) currently and later today is up for another platelet transfusion. 

There is no way to know what the next 100 days will bring. We have to move with the punches so to speak. Luckily our sense of humour is granting us a good armour.

For those who know Allison well, you know that she likes colours and brightness. For her day count I created some kindergarten style numbers. Hard to tell but they are sparkly! Close but not good enough. So Allison ordered on Amazon a package of number flashcards to 100.

Our neurologist, Dr.Rush has been absolutely incredible.  Last week she arrived early in the morning with three tubs of Sorbet for Allison.  Comfort food is a huge bonus when in this state.  As well, yesterday she brought one of her prized graduates by to meet Allison and give some words of encouragement.  Two years after her transplant she is as alive as ever.  Living a busy life full of helping out others going through the same experience.  The main message which Allison is holding on to is that although we are not sure how much of the current MS damage can be healed - this transplant puts us in a position where we are no longer living in fear of attacks and further damage.

Today Allison got up for the first few steps.  Lots of work to do this but as they say - baby steps!!!

Post Transplant Video - Click for video

 

Pills for the Pills and more pills for the other pills...

We got pills for the pills and more pills for the other pills…. and so it goes here in Room 5216 (don’t drop in, they wont let you through the gate).

 

 

After several weeks of tampering with Allison’s immune system here is where we stand.  She has been in bed in the hospital now for 14 days and during this time her mobility has been almost nil.  Her immune system today is at zero.  Doctors believe we should start platelet and blood transfusions in the next day or so.  Now is the time for constant monitoring and managing the side effects of all the treatment.  This part of the process is expected to continue for another 8 weeks.  The long laundry list of possible complications is an area which we avoid dwelling on.

 

Chemo Round One - Check

Filgrastim to stimulate Bone Marrow to produce stem cells - Check

Harvesting of Stem Cells - Check

Anti-Seizure Treatment - Check

Chemo Round Two-Five - Check

Chemo Round Six-Nine - Check

ATG antibody treatment - Check

Stem Cell Transplant - Check

 

Assortment of side effects range from headaches, body pain, nerve pain, nausea, stomach issues, double vision, loss of mobility, loss of appetite, water retention, drowsiness and disorientation and a few other things I may have missed.

 

Today is what they refer to as Day Three.  Allison had her transplant on Tuesday which although the high point in the process, it was also a little anti-climactic. 

 

Here is the FB post from day of transplant:

 

So the transplant is complete! We had been told by the doctors that for all the preparation we would find this part a little less exciting than it should be.

     

Two small bags of Allison’s cells arrived in a cryogenic container. They were thawed and administered via IV. Took less than an hour.

 

The one exciting things it that the hospital made the full transition to being paperless this past weekend. It has been interesting to watch the staff adjust to the new computer systems that they now wheel from room to room. Allison’s transplant today was the first on the new system and there was more hubub about the computer integration than the process itself. That added an extra dose of special.

 

All is calmed down here and Allison will rest for the afternoon while her stem cells flow through her body looking for their place in her system.

Settled in for a nice stay in a hospital bed...

Well folks, 

It would be a lie to say we don't have anything to report , however there have been no firetrucks or ambulances in our lives in the last four days.  Allison has settled into the hospital for 8 to 10+ days.  During this time she is receiving a 4 day course of chemo (Busalfin), a day break and then another 4 day course of chemo (Cyclo).  There is also some enzyme treatments which I am not fully up to speed with yet, but when I know I'll share with y'all. For now all I can say is that is is an ATG antibody (grown in rabbits) to clear t cells.

 

The days are long.  Early start and late end with many hours of sitting with Allison to help get through the time.  In all fairness, it is not so bad.  We have a tv and Netflix so we can waste time if we want to. I also am working a bit on some new songs I have been writing and we are keeping our heads down and getting through.

Today the hospital Physiotherapist dropped in to get Allison some exercises for this time when she is laid up and tied to several tubes. This is a good thing as being in bed 24 hours a day can be exhausting and fatiguing - exercise will help for sure.

Here are some words I poached from one of Allison’s recent “close friends” group post.

Hi ladies, I woke up this morning feeling much better. I am settling into the hospital, the nurses here are fantastic. I started my first day of chemo yesterday and it went well. No nausea I just had a headache at night but they were able to give me something and it was gone by the morning. 

The PICC line is wonderful basically it is two permanent tubes that can be used to get blood and put in fluids, chemo etc. without having to be stabbed continuously considering I need bloodwork daily. 

I don’t have any exciting photos to share of me so I will share more of the girls from Cassidy's Prom last week. I must admit I had a bit of a crying meltdown on Friday not being there with her but I know I’m going through this so that I have a long healthy future with them. Yes I’m going to be the proud mom and share lots of photos.

Also I should mention that a visit from good friend Neil last week flew totally under the radar.  Seeing good friends is important and I appreciate him making the drive to spend some time with us.  The visit went sort of like this: lunch, guitar show, dinner, drinks, sleep, hangover, breakfast and goodbye.  Fun times...

  

911- all okay now...

Update. 911 (all is ok now)...

It is 3:09 am and I should be sleeping. I should be sleeping because I need to be up at 6am to take Allison to the hospital to have her PICC line out in place. I should be in bed because it is the middle of the night. Allison should be sleeping soundly beside me, but alas. I just followed the ambulance with my wife inside across town to Ottawa General. 


Allison is stable right now and I am waiting to talk to a doctor. Allison is scheduled to be admitted to hospital for 8-10 days starting Saturday. It appears she may be checking in a little early.

So what’s going on. According to Dr.Ken ( me with my pure speculation / sort of) Allison started a new anti seizure medication on Saturday night. They use this as a proactive defence against the small possibility of seizures during Allison’s chemo. Apparently one of the chemo therapies works inside the brain and crosses easily through the blood brain barrier. This high dose working in this way can trigger seizures in some patients. 

By Tuesday Allison was experiencing some severe negative reactions (dizziness, fatigue, muscle spasticity issues, loss of mobility) so we went to the hospital and they decided to change her meds up. On Thursday (second day new meds) Allison has a bad day. Pretty dark and depressed with a good dose of pain and discomfort. Went to bed around 9pm and at 2:30 woke to go to the bathroom and that’s when things got weird. 


She began slurring and not really making sense. Adding to this the different size pupils, trouble catching her breath, clammy skin, and her feeling like she was falling even though she was sitting still. 

I quickly called 911 and waited for the ambulance folk to arrive. We got her vitals and her blood pressure was pretty low. They decided to take her to hospital and I packed a bag and followed. 
So I sit here st 3:19 and wait. More to come..

It is now 6:15. My alarm just went off to start the day and get Allison to the hospital for 7am. But we are here already. Allison is in bed resting and I am sitting in a chair next to here bed. I think the plan is to get her PICC in as planned and then admit her into hospital a day early. I won’t know for another hour or so - until then ... sit, stare, browse twitter, sit some more ...

Allison returned to the room around 9am. PICC line was in successfully and she was feeling much better. By mid morning a member of the team (hematologist) arrived and cleared Allison for. One of the expected blips in the road and he was confident all will be fine until tomorrow when she gets admitted for 8 days of chemo. 

What a ride!!! 12:19 in the early afternoon and I am heading to bed. Allison is comfortable on the couch. You can tell by the smile in the pic of us leaving the hospital that she is feeling a thousand times better.

.

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.

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