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Archive for May, 2009|Monthly archive page

6 Month Bronch Results

In Uncategorized on May 24, 2009 at 3:59 am

Tuesday was 6 month bronchoscopy/lung biopsy.  Aside from thinking they might have “popped my lung” it went great! They hadn’t collapsed it after all, which is a relief. I always sign the release saying I understand the risks of the procedure: one in every hundred may collapse.

ANYHOW, the pathology results greeted me on the answering machine when I got home from my (AWESOME) bruce-trail ride on Friday: NO REJECTION! Yes!!!! Good to hear, because you can’t always “feel” rejection at first. Also, my CMV count was ZERO again this week, so the i.v. treament has been staved off, for now.  My white cells are… well, they increased a bit, though still lower than “normal”.

Assorted stuff:

*Heard a Cuban band in Little Italy on that really hot night this week: it felt like being on vacation in another city.

*CBC have kindly spun Lickin’ Good Fried a couple times this week! Oh, & we are playing the Toronto Jazz Festival (ironically,  yehaw!) on  July 5th. Nice!

*Tom took his first swim at the folks today, and we all washed our cars in the driveway making it a family affair. Jennifer even pulled the dent out of Tom’s Monte Carlo with a toilet plunger! I kid you not.

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SUMMER’S nearly HERE!

In Uncategorized on May 18, 2009 at 4:39 am

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Taken before an excellent trail riding adventure!

It’s great to feel the summer sneaking up on us. The yard has turned into a jungle of perennials and now, thanks to Tom’s hard work, some great annuals.  Apparently transplanted people should stay away from earth, and gardening, so I watch from a healthy distance and give feedback if asked. Tom has a green thumb, it’s true! And presently the first of the summer fireworks can be heard on the wind coming from Ontario Place. Willie Nelson is playing loudly on the stereo to drown out the frightening pops and bangs for fearful Henry.

This week I got back onto the trails at the farm… I have NOT been on them since November 3rd… the day before transplant. It seemed as though nothing and yet everything had changed since the last time I rode through there. “Lungs,” I said as we entered the woods, “meet my favorite playground!”  And we took a walking tour and smelled things, and heard the drone of the woodpecker, and shied at little blue flowers, and perked at the sight of squirrels, and stopped to lick the dirt in pony’s peculiar ritual spot. But anyhow, we showed the new lungs around!

Following that success, Tom and I went on a GREAT ride — did I say GREAT?!?!?! — back to the first side-road, via the woods, the lane ways and the fields… Wow.  Okay, GREAT isn’t a suitable adjective: MARVELOUS maybe? AMAZING even?  Here is a list of some of the things we smelled/heard/saw;

*HUNDREDS of pale pink and white trilliums in the woods. *Hundreds* I’ve never seen more!

*two wild turkeys

*Gold finches

*Indigo bunting, Scarlet tanengers (or something of the such!)

*red winged black birds

*Killdeers and their days old babies!

*Canada geese and goslings

*The sounds of a woodpecker calling

*Red tailed hawk

*a cedar grove which smelled DIVINE

*Oh, the sweet smell of the waving grass fields we rounded, and grass on Gypsy’s breath

*So many smells of the forest, and all unadulterated by oxygen hosing.  YESSSS!!!!!

The horses were so well behaved and both heaved great relaxed sighs of breath as we got deeper into the wilds.  In one oustanding stroke of luck we chanced upon a field, formerly a corn field, that had been totally cleared and was totally flat and dry and inviting: like a giant racetrack.  It’s like putting drugs in front of a junkie: neither of us could contain our innate lust for life: we both urged our horses up into a brisk trot and did a lap. After the first delighted springy lap Gypsy heaved a great sigh of relaxation, and, put on the gears for a second great lap, this time her frame lowering and lengthening as she really got into her “super trot” which covers an impressive ammount of ground and had Tom’s horse cantering to keep up. There were other daliences into the wooded paradise with it’s trilliums and ferns and maples, and then another return to “the perfect” field where we took a canter.  You could just feel the horses glee and their body language thankfully opening up after months of cramped indoor quarters. Me, I was just so thrilled at the experience: to be able to go and go and go so QUICKLY and only have to stop — wait, I didn’t have to stop! It was only to let pony take a break really! That’s when we noticed the indigo bunting and had to pinch myself to make sure this was “real life”.  A liesurely stroll back to the barn, some apples and mints, and a nice roll in her paddock left Gypsy looking mighty happy as we drove away.  To have the love of my life beside me on his horse only made this day the more wonderful. So grateful.

For this week was not without struggle.  While my CMV status has come back negative, there is still talk of treating me with EIGHT WEEKS of I.V. anti virals… Yes… But first we had to get my white count up, which had dropped precariously low. This meant several days of injections which gave me the most horrendous bone pain… well, my bones were busy making blood cells… but it hurt like the dickens and I’m glad I still had some pain killers left from the transplant surgery.   This all was happening at the same time as some bad news.  I spoke in last week’s blog about Jason having been very sick. It is with heavy heart that I must report to you that he passed away this week, after a very brave battle. He was transplanted in July of 2008. I am still in shock and disbelief that this has happened.  As one wise person said to me this week, “Ah, you’re experiencing now the Yin and Yang of transplant….”  It makes me scared. It makes me so sad for his family. It makes me even more determined to live a good and full life!!! It’s probably why I let Gypsy canter up that last hill home: live life full throttle where applicable!

Live life fully, yes, but also to pass the word on about transplant, yes? For those of you who were not able to hear my interview on CBC’s Metro Morning (and subsequent rerun on Here and Now) I’ll include the ten minute piece here. I’d like to thank Matt Galloway, host, for getting me to do this: it’s taken 32 years for it to feel right!  My ONLY concern is that now people with CF have been writing to me and expressing their desire to meet or come to my shows. And this simply makes me uncomfortable. I just can’t take the risks of being in social distance with other CF people due to contagian risks for Cepacia (that nasty contractable strain of CF via the air/droplets). Not sure how I can spread the word about transplant and stave off personal meetings with CFers. This is somewhat weighing on my mind. I *do* want to tell people “transplant works”, but how to do it cleanly! Well, the radio was good for starters! Click to hear it.

So, I have my 6 month Bronchoscopy this week. That’s the lung biopsy they do to check if you are having any rejection, and this is a routine check.  Can’t say as that doesn’t make me nervous, but it’s part of life now.  Jennifer is vising from Montreal, and Tom is smoking a roast on the bbq tomorrow… There are still traces of my first rhubarb/strawberry pie of the season in the kitchen.  I rode an ex-racehorse, a fancy warmblood, and my Gypsy this week… what will I do NEXT week?! Until then…




Mother’s Day!

In Uncategorized on May 11, 2009 at 2:45 am

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Mom riding M'Lady

Today I finally got to give Mom the  wagon wheel we’ve been driving around in my trunk. It looks great in her beloved garden and I’m so glad she loves it! Her pool is open now & so the garden is the focus again. She’s amazing and deserves nice things!

I spent the day at the farm, riding both Gypsy, and another mare named Matty fun.  Then Tom  arrived and we rode together, side by side. It’s almost sickeningly cute. I love my cowboy! (Although the only thing we herded today were  a family of Canada geese and goslings.)

Speaking of animals, Henry got a $260 ticket from a by-law enforcement officer for being off leash in our local park… the same park the police had personally encouraged off-leash behavior in an effort to quell local “criminals” from dealing drugs out of our park.  Tom got really mad, since he’s put a lot of effort into that park over the years, picking up needles, trash and human feces over the years. To get a ticket for having a 14 year old dog off the leash in that same park while he innocently sniffed around …. well, Tom was livid.

But, we take it with a dose of reality. Recently, an acquaintance through the CF transplant program has been very sick. Lots of prayers going out his way (he was transplanted in July/08)… So, you never know when the other shoe might drop, or you might become really ill again… in the grand scheme of things a ticket for on off-leash dog is pretty miniscule.

I begin my 6 month assessment in the morning, CT scans, (everything scans really!), over the next seven days… I hope the Doctor who specializes in CMV will not decide to put me on i.v. therapy, but the fact remains that my cell count hasn’t dropped in two weeks on the oral therapy.  I coughed up two blobs of phlegm this week.  I was horrified!!! It’s set off a stream of “mucous”/illness dreams that are troubling.  But, aside from feeling tired, I’ve seemed stable. The fatigue might just be because I’ve had an incredibly busy week, with our 45rpm record launch, a party with horse friends, riding lessons, hospital appointments, and this television show that I’m involved in taking up my time.

Perhaps the most monumental thing this week was my official professional “coming out”. Yes, after 32 years of avoidance, I appeared on the CBC radio’s Metro Morning with Matt Galloway to openly discuss transplant.  It was emotional and honest.  And I had lots of positive feedback from people who heard it who were in equal measures touched, and inspired. One person at a time is a great way to convert organ donors, but province-wide radio is an AMAZING way to reach LOTS of people all at once!!!  I know so many nice people waiting for lungs… I just want them all to get their needs met. I used to sell booze for a living. That was my old singer M.O.  My new M.O. is quite different, no?

And so, it’s Mother’s day. Connie Pangman did an awesome job taking care of me. I get emotional just thinking of it.  And then there’s some other Mother out there, doubtless she is sad today because she lost a child in November, but my donor’s Mom… if you’re out there: you’re kinda’ responsible for a huge part of me now. So, a big hug to you. I love you too!

May 4th, 2009. Six Month “Lungiversary”

In Uncategorized on May 5, 2009 at 1:23 am

picture-12Today is the six month anniversary of my lung transplant! I’ve been thinking of it all day. I finally began drafting a thank you letter to my donor’s family, which I intended on doing once I was back to singing and riding again fully… but how does one start that letter, “hi, we’ve never met, but you changed me life?!”  I am just so grateful for their gift, and also aware that they are probably grieving this anniversary.  I want to mail this letter soon in hopes that their sadness might be comforted by reading of the happiness that I’m experiencing because of the selfless and thoughtful wishes of their loved one. “Six month Assessment” and broncoscopy happen over the next couple weeks, but today I had routine blood-work, and then took Henry for a walk in the sunshine to look at the blossoms in the neighborhood, inhaling the smell with fresh lungs. Very special. Very grateful.

May Day!

In Uncategorized on May 1, 2009 at 11:52 pm

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May day! May day! It’s the first of May, and we need you to consider becoming an organ donor!  RECYCLE!  Talk to your family and let them know your wishes. If you’ve read my blog you’ll know how it can change lives. These ads for Lung Mart are popping up around Toronto lately: “if organs and tissue were this easy to find, we wouldn’t need donors.” Pretty freaky ads, but they provoke discussion, which is what we need! I encourage you all to visit their interactive web page at RecycleMe.org.

I’ll be out in the media soon too. Wow. I’ll actually be COMING OUT about my health! To do this has *always* scared me and I managed to keep my health a pretty good trade secret for over a decade. Frankly I wanted people to associate my name with  SINGING and not with an illness.   I never found spreading the idea of a jazz singer coughing up blood between tunes was very romantic (not like the blind man playing the blues).  But now is not the time for Secrets. Now is the time to spread the word. Mid-performance  I told a room-full of folks at Hugh’s room about my transplant. It was a packed house. How could I, in good conscience, NOT tell 125 captive audience members the miracle of transplant? Of course I drove the message home with a big loud song.  A *lot* of people came up after the show to express their amazement and willingness to become donors. Rewarding to say the least. A feel my calling coming on!

At the stable I’m getting my stamina up and have started jumping pretty much full courses of jumps in preparation for showing this summer.  To further press the matter I bought an especial *show* helmet!  On a whim I even took up the offer to ride a large Thoroughbred who was wearing just a halter for steering. The next day I tried the sensational running walk & canter of a Tennessee Walker (from bareback) to broaden my equine palette. I love it!

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Oh, La LA! I’ve been very BUSY with the television show of late, and also gigging. Lickin’ Good Fried release our 45 rpm record THIS SATURDAY NIGHT @ the Dakota Tavern in Toronto.  8pm show,  then we go again from 10pm – 1am. I’m VERY excited!!! We just picked up the vinyl tonight…. (and don’t worry, for those of you with no turntable, we will provide you with an MP3 for your purchase! For $5 you get the 45 PLUS two MP3 digital downloads of the singles.)  Performing has rarely been this fun to me as lately. I am *loving* what I do again without the bad lungs to overcome. I am *loving* this band. I am *loving* being there in the moment and pray it goes on and on.

Health wise, my CMV level is still a bit higher than they’d like despite about ten days pill  treatment. I go in soon to see if  I will need i.v. therapy to curb it.  (Guess that’s why they encouraged me to hold onto the iv access in my arm.) Hopefully it remedies itself before coming to that. I pray! IVs are something I have enjoyed being without.

Finally, check out the current Hot Docs festival for a film called 65 Red Roses about one  Cystic woman’s journey to lung transplant. It was on the cover of this week’s NOW magazine and got critics pick.  The article can also be found on-line.