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Top News about GreatSwamiThis is from his Facebook today, 1 hour ago!! An update on my health! It has been a most interesting and educational journey to this point. On average - and who after all is average anyway - I feel about a 7 out of 10 much of the time with glimpses of 8's from time to time and the odd trough down to the 6's and 5's when it seems I just run out of any get up and go. But all things considered I am doing exceptionally well - and far better than I imagined myself to be at this stage. Today (Sunday) is day 86 post bone marrow stem cell transplant - I am still on high dosage cyclosporin and just in the process of weaning off the prednisone. I was told I could stop "cold turkey" on Monday but I've been there before with prednisone and like my inner pirate suggests - I shall drop slowly to allow my body to adjust - but not too slowly!) Once I am off the prednisone in a week or so I will probably see the cyclosporin dosages reduced with time. Hopefully these immuno-suppressants are something I can wean off entirely at some point in the not too distant future? So far I have avoided most of the nasty things and have not caught any colds or flu bugs - nor any other real nasties. (I did get my spell with the BK virus but that has faded nicely - thank goodness!) At some point maybe the graft versus host reactions will kick back in as I am off the prednisone and the cyclosporin levels are tapered off - but we shall deal with that when it happens. We have had an absolutely splendid October and early November so far for weather - very mild mostly and great for my not quite daily walks. Our 'staycation' here in Calgary soon ends however and we return to Red Deer on the 19th - this Saturday. (We are in for a cold spell starting Wednesday with snow in the forecast - but being Calgary who knows?) Our hosts return from their 1 1/2 month South African adventure sometime on Wednesday too. It will be good to return home - to see little Taco again after leaving him on the 7th August - and of course get back into the social melee that is our four grandchildren there! I had an after transplant bone marrow aspiration done on Monday last and my CVC line (the chest octopus!) taken out with minor surgery on Wednesday and apart from some bruising - all has healed up very nicely. I have my Monday meeting at the Tom Baker BMT clinic - the stitches over my CVC removal site get taken out - and some labwork done the old fashioned way with a needle - and then I see what the future has in store. It may be a couple more weekly visits, then monthly for a while and then quarterly and finally bi-annually for the next 18 months until after all my vaccinations are redone. It will take perhaps another 6-9 months to fully regain my energy levels (from anecdotal evidence) but who knows - I am doing so much better already than anyone expected! Thanks to all who have helped me in my journey here these past few years - both materially, emotionally and in holding me up spiritually - it has (and continues to) truly made the difference in so many known and unknown ways. My focus now will be to spend the Winter ahead recuperating and being as good a helper for Anne as I can be - and then focusing on all the changes that we will be facing over the next year or two - and even making some "strategic" plans for the coming decade ahead. There are many unknowns for Anne and her spinal arthritic issues and her Parkinsons. We will start with some spinal surgery at some date as yet unknown to fix the neck issues. We will be working with a local physiotherapist to see what can be achieved with targeted exercise and muscle retraining. (Melody - our daughter - has already given us some excellent help here!) I attended a very interesting and informative Parkinson's seminar held at the University of Calgary Campus at the Foothills Hospital site a week ago last Saturday. This was held and presented by some very talented medical professionals specialising in Parkinson's related issues medical, technical and psychological, a representative from the MJFF (Michael J Fox Foundation) was there as well as a large audience of Parkinson's affected folks numbering close to 300. The main takeaway was really one of learning how to adapt and how to to "retrain the brain" - as well as learning mindfulness techniques - to keep the main focus on the ever moving present rather than living in the past or grieving too long over the future. There are some interesting "wearable technologies" coming down the pike - but so far no interesting new pharmaceuticals of much promise other than the standard treatment which has been around for over 50 years now. But every year there will be some new understandings and maybe some breakthrough will come? ...and sooner rather than later. Will update when I have further news to report - but for me my "big medical journey" chapter has almost closed (just some tinkering remaining and some monitoring) - now it is time to begin working on the shape of chapters yet to come - all the while understanding that I too have to remain very mindful of the ever evolving present - and try to make all such future presents count! I can now safely (no potential insurance issues) drive again - and took full advantage a few days ago to take Anne out for a picnic lunch at Gleneagles in Cochrane overlooking the town, the bow river valley and off to those most magnificent Rockies. We of course had to finish the Pic Nic with the famous Mac Kays ice cream - which we enjoyed in a little park down by the rivers edge. Nice! On the way back to our little and beautiful oasis in Edgemont we drove through a new Master Planned lakeside building development called "Harmony" - and we allowed ourselves to dream once more... Hmmmmm! It begins... Thanks again for your support and uplifting thought and prayers. It is of the most fundamental help when traversing such a difficult and sometimes quite frightening terrain. But for me I have been carried through all those most fearful places - and I like to think I have learned much and have become better for having made such a journey. I am still a most lucky man! |
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