Yesterday was a little celebratory for me. First, I blew my best lung function in months…. I was wonderfully amazed to see the number! I feel as though the inhaled antibiotic has really helped. It must have done. Sure, it takes almost two hours daily to administer, but I’d gladly pay that price to be able to do what I did next: I went directly to the stable, I jumped onto the horse, and while I knew my exercise tolerance was improving of late, I really tested in yesterday. All summer I was able to get a certain distance, come early September that distance improved a little, and yesterday I blew my summer record right out of the water! I trotted continually around the really big hayfield ALL THE WAY without stopping! I could have gone farther, but I was starting to breath a little hard and the horse was starting to feel silly. In any event, can I just explain that to just go and go and go and NOT have to stop to catch my breath, was SUCH A GIFT! There I was on Sept 28th, in a t-shirt in 22 degree weather on a polite and fun horse under a blue sky in a green hayfield with a new set of lungs, just BEING A RIDER! Going and going. The sense of freedom was intense. With each stretch of the loop I kept saying, “holy cow, I’m not even breathing hard yet!” To add to my thrilling week, we filmed a music video the day before which was extremely fun to the max. I will let you all know when it hits the air!
Archive for September, 2011|Monthly archive page
I had the honour of being asked to speak at the Sarnia Organ Donor Awareness group’s Jazz in the Village concert last weekend. I was to speak about my transplant story, to encapsulate it in 5 or 10 minutes. (& you know how long-winded I can be!) I determined to keep it up beat mostly, focusing on the heros, the lives changed, the miracles worked, without undermining the seriousness of it all. I told people about http://www.beadonor.ca also and how important it is to talk to your families about your wishes to become and organ donor, or as I put it that day, to be someone’s hero. Anyhow, the “SODA” festival has been raising funds for eight years now, to aid in relocating families to Toronto’s hospital district, or to pay their fuel charges back and forth, and even sometimes their rent while they convalesce. It’s a really thoughtful and obviously lovingly run volunteer organization.
Happily my inlaws came along and brought some friends: always good to see the inlaws, especially since mom-in-law had a brush with cancer this summer. An hour or so after my talk my band the Allecyats performed our jazz show to a standing ovation. (Which is great considering we followed Order of Canada Guido Basso’s crackerjack band.) It was a lot of fun, and even more meaningful to do it for that crowd, & of course for family. After the show Tom and I went to a really neat Trattoria where the Italian Mama chose our meals for us. She spoiled us, and then we rolled outta’ there and headed to the charity casino. I lost $15 on the I Love Lucy Slot (all I got was a bucket of water over my head in a Lucy Clip they played!)…. Tom however won $50 on the Jack Daniels slot. Perfect. Next morning we drove to the farm and had lovely rides on our lovely mounts way back in the bush. As my husband just said, “time flies when you’re totally insane!”
Since I finished my iv last week I’ve been pleasantly suprised with my increased exercise tolerance on the horse. The inhaled anti biotic is a bit of a drag (takes two hours a day!!! That’s two hours I’m tied to the computer and unable to use the phone to conduct business) but I try and make the most of things. I have five painting commissions on the go that I’ve been prepping for with lots of photography sessions at the farm, and, oh ya, had a tube down my nose for 24 hours on Monday and ate a radio active sandwich for breakfast for some wacko test. Like Tom says… our lives are totally insane! All this and prepping for the music video shoot on TUESDAY!!!
One of the many things I did want to do this summer was spend more time on a dock. Any dock. My most reflective times in life it seems (when I’m not blogging that is…) come when I’m sitting on a dock. My family used to go every year to the same cottage on Mary Lake, Muskoka. I’d look out at Rocky Island & the big rock there that the daredevils would jump from. Every year I’d go back and stare at that island rock. I’d think how much my life was changing, and how that rock had, basically, stayed the same. It was a time for annual reflection.
Well, we no longer rent there, but I did get to another lake last weekend, this time Crozier lake near Baysville. Belly full of Webers cheese burgers, (yes, I ordered two… ) we ferried all my IVs and meds in a floating cooler on a boat across the lake to Manfred’s Island. (I figured my cooler had to float in case of disaster!) We arrived to the island to learn they’d gotten a dog since our last visit. It was so lovely to have doggie energy around again (and no, we have no immediate plans for another dog) We stayed in an amazingly beautifully rustic and cool old log cabin with friends, complete with pot bellied stove and deer-head over the fireplace. We sat on the dock, we talked, I waded in, Tom leaped in, & there was a dog to stand at the end of the dock and “lifeguard” as the people swam…. just like Henry used to. So while life has changed considerably, it’s in many ways the same… up to and excluding the fact that now I wasn’t staring at an island from the mainland, but quite the opposite.
Here I go reflecting. So, the last time I was on this island was a couple summer’s pre transplant. I was scared to swim because I was afraid of losing my breath and sinking. That’s when Manfred gave me a wetsuit: bless him. Last time the outhouse seemed a thousand miles from the log cabin… this time, it was a quick trot (not literally) through the woods. Last time the water took away my breath, this time it was all laughs. So, no Rocky Island, but with the water, and the loons, and the star gazing, the same reflections. This time I hung my iv from a cedar tree on “the sunset dock”. I have new lungs and I’m trying my best to fix them.
Come Monday I learned that we will be stopping the iv therapy because the bacteria is gone. I will stay on inhaled pro-actively so they don’t return. I will pray that numbers continue to increase with the vanishing summer heat and humidity, and with the wonderful TOBI inhalant newly added to my arsenal.
I took part in the Patsy Cline birthday celebration last week. It’s a wonderful night with a great band, and great singers. I got to go on last (after one of my childhood singing idols from Prairie Oyster). It was hunky dory hillbilly fun (and quite the fashion show). Patsy Cline was the perfect marriage of country girl, and popular music star….. which reflects my own musical interests, only Patsy had way bigger lungs! What an honour to be able to take part in the celebration… Incidentally, I sang one of the same songs that I sang my last summer pre-transplant. I like to think I sang it better this time around : )
Last but not least, I have been in the studio tinkering on the new recording project, and we are in the midst of planning to make a music video for one of the songs from 33. Unreal. Seize the day!
Which begs the question, WHEN DO I SLEEP?!?!? (No need to worry, I get a solid 7.5 hours a night folks ; )
… so this chest infection has been a thorn in my side all summer, and I’m just wanting to be my best. Irregardless (or was it?!) we booked a trip to California the last week of August. This was as much for Tom, as for me, so we all went: us and the i.v! And I’m glad that we took it all, the entire liquid pharmacy of drugs, to America. Security was not too much of a hassle, were sympathetic even, and I’d much rather do my iv hanging the bags from a fig tree in San Francisco than from the wall in Toronto. So I did! I’m pretty self reliant as patients go (practically an RN, I’d say; ) Our days were: get up to give IV, get out and see the city, and the sights, come back to hotel for mid afternoon to crash/nap and give mid-day iv, and then maybe dinner and a band or a couple drinks and then home for my midnight iv. It was a really good recipe actually!
In San Francisco we loved walking around the Mission district with the tall palms, the tacos, the whole bit. We had a Victorian B & B there and that’s where I hung my iv on the fig tree on our balcony. Not too shabby! San Fran is famously hilly and foggy, so except one exceptionally steep hill in a really foggy mist I managed the hills without needing to slow down and so we walked lots, which felt great! We even saw the Picasso exhibit that had me in awe (art-school drop out that I am!). I tried swing dancing to a great band. It was good stuff! I mean, it was good stuff because we ATE so WELL and so CONSTANTLY! (sometimes a $10 meal, and sometimes hoity toity fancy chmancy dining) What a great town for eats! And treats: we did a lot of shopping to replace the empty space in my return bags that had housed the iv supplies and the meds we took down. Downtown we stayed at Hotel Vertigo, where parts of the Hitchcock film were made. We used it as our base for vintage shopping, driving around the steeps streets, eating (did I mentioned we both gained a few?), and bar hopping. Our last stop was two nights out in wine country where we rode bikes round the vineyard at sunset, attended a polo match, and went on a three + hour (fairly rigorous) horseback riding excursion in a National park that was awe inspiring. The views were AMAZING: The tall redwoods, the ferns in the tropical seeming forests, the berries, & the cliff views, from the backs of lovely horses.
It was a grand GRAND time. And I’m so glad I didn’t stay at home and mope.
Now September is here, and I’m wearing socks a lot more as it’s suddenly cooler in Ontario (very San Franciscan, actually!). I had a meeting with the Docs and we are starting a new inhaled drug which should help to further improve matters. Imagine my SHOCK at the pharmacy when I read the bill for $200, 000! Needless to say it was a very gross overestimation. When I regained consciousness the account was set a-right and I took home my “liquid gold” inhalations which I’ve just started. Fingers crossed it seals the deal. (And thank God for our coverage). So far we have really made inroads in decreasing signs of the infection. Only thing is, these bugs are smart, and my immune system is purposefully smothered to prevent rejection and so…. infections can take a long time to heal. Patience was never my virtue.
But somehow I’ve arrived at the ripe old age of 35. I turned this staggeringly human number on Labour Day. (A day which my Mother well knows the meaning of ; ) To Tom it was just another day among many happy days we share. I think it was more my Mother and myself who were most sentimental. I am now squarely in my “mid thirties”. For a kid who wasn’t supposed to be here, never supposed to see grey hair and fine lines, this is a miracle. I finally put my heals up at a cottage over the long weekend, and celebrated by –GASP– reading a BOOK! (Oh, now I know I’m slowing down, chuckle.)
Happy September folks… and don’t stay at home and mope, unless you’ve got a good book on the go ; )