No, I don’t need “two little crutches” that’s just the bingo lingo for 77 and it’s been 77 days since my transplant!! It’s also been some time since I blogged, so here goes.
Christmas in Moscow. There was no traditional fare and no special hospital menu items but I did have
my sister Nicole arrive on Christmas Eve so we spent the day wearing Christmas beanies and FaceTiming home.
On December 25th, Dr Fedorenko also gave me the special gift of a spinal infusion and along with having my neckline removed. Woot!! Those things aren’t something that everyone wishes for, but it was a very welcome gift along with a proper long shower.
The man is a genius with the spinal infusion (Methotrexate + Dexmethasone) and if I had to score my discomfort on a scale of 1 – 10, it’d be a 1. Seriously, it was over and done with in under 10 minutes and it was more uncomfortable having to lie on my stomach for an hour.
It also turns out that I’m the first person in the WORLD to have the protocol I did as directed by Dr. Fedorenko – the key difference being the 2nd spinal infusion. It (and I) will be written up etc…
Isolation lasted for 9 days , previously in 2014 it was 12 days.
I can’t tell you how many times I brushed my teeth (with a soft tooth brush) when I was allowed access to my stuff again. The mouthwash served its purpose and it was like Chernobyl when one gargled but there’s something about a brush and toothpaste to feel human again.
The final step in the treatment process was an infusion of Rituximab, it took around 7 hours. Zzzzzzz.
Nicole kept me company and content with a steady supply of ice-cream and snacks.
I was the last patient to leave the ward on December 29, 2017.
Sad, excited, nervous and amazed at what I’d done in the prior 30 days.
Departure was a breeze, it’s almost worth considering wheelchair assist even if you don’t need it – it makes things so much faster and easier zipping through the airport and going straight to the front of the line at immigration and customs. #kidding #notkidding
We arrived safely home on December 30th after a largely uneventful flight, which is what one wants on any flight.
A full fridge, my own bed and my dog.
Unsteady and weak AF at first, but I’ve been fine on my own with a visitor most days.
When I say unsteady and weak, I managed to trip a couple of times which hurt my pride more than anything else and I resigned myself to the purchase and use of a rollator around home. I’m still using it but am confident it’s a temporary measure.
I’m getting stronger, and symptomatic improvement isn’t yet evident but Dr Fedorenko explained that I need to be patient particularly considering the aggressive regimen I’ve been through. Ugh.
Patience is the greatest thing HSCT will teach you.
I obviously didn’t learn it first time ’round.
I’m having weekly physiotherapy sessions which pretty much started as soon as I got home + I’m doing 2 x 30 minute PT sessions. It was suggested by Dr Fedorenko that I’m better doing such activity for shorter periods but more frequently so this plan is currently working well for me.
I’ve visit my haematologist regularly and my levels are good for this stage in recovery.
I’m not driving yet and so have been pretty much housebound, so I’m grateful to those who’ve made time to visit or take me out. While I’m sure I could physically drive, I probably couldn’t do much when I got to any given destination. So, it’s a good thing that I’m a bit of a homebody, don’t mind my own company and have embraced online grocery delivery and have my physiotherapist and trainer visit me at home.
In summary… I’m good, feeling well and getting stronger.
What’s next? More rest and recovery, and a whole lot of slow and steady.
I will win this race.
Hugs ‘n love,