Like The First Time All Over Again…

Canada Live taping, Photo by South Paw Productions

CBC Radio has now posted the recording they made of our Lula Lounge show. (Click here to download “Bury Me With the Bottle”)

And can I say, it’s really the first time I’ve heard my recorded voice since the transplant; was able to stand back from it and really hear it, hear what it sounds like to you all.  (It usually sounds different in my own head!)

In any event, I just have to say it was like hearing myself for the first time ever.  Wow.  Crazy.  The last time I heard myself on recording there was an awful lot of phlegm & wheezing and popping that we had to edit out. The CD we made has many little edits on my vocals to dodge out the phlegm, as I was very very sick when we made that recording.

But a live recording is different and you can’t hide anything live. But, my friends, there was no mucous to hide, no sickness to bury: just lots of lung power, and a clear, bright, strong voice.

I heard it! I replayed it, just like I did when I was five and first heard my voice played back on a tape recorder. I was saying to myself, “holy crap! That’s ME? THAT’S ME!!!!”  I almost had a moment: it was just so pure and clean. Simple. Like it always ought to be. And there, through the speakers, came the sound of my new lungs. My. New. Lungs. Holy cow. They work so beautifully for making music.  I mean, I’ve felt it, I know it, but to hear it — actually HEAR it? Wow. Now the only faults in my singing aren’t born of illness, but just born of goofing lyrics or just plain singing lazy. But there’s no more CF ravaged lungs! So simple. Just the way lungs were meant to sound.

And it only took a lung transplant to get me there.

Amazing.

Wow.

I’m just in awe all over again.

I’ll shut up now.

The entire concert is available on-line for download, and will air on CBC Radio Two this spring.  Lickin’ Good Fried on Concerts On Demand.

Canada Live taping, LGF, photo by South Paw Productions

In The News

Apart from the ultimate gift of my anonymous donor, who is the man responsible for my transplant? Why, it’s Dr. Shaf Keshavjee, and he was in the Sunday paper…

Read all about him here.

I’ve often marveled that for me, a “good day at the office” means entertaining some people in song (not to trivialize it, but pretty much everyone can sing).  For Dr. Keshavjee, on the other hand, a “good day at the office” is when he saves someones  life… Wow. I mean. Wow. Here’s a photo of the mighty man who has changed the lives of so many, and who’s poked around inside of yours truly putting me back together again;

In other news,  I’m excited to be able to share with you the Horse Canada article from December about Gypsy’s roll in this transplant story! Dr. K & Gypsy were both on “team transplant”, though from very different worlds…

Click here to read “Gypsy’s Gift: The Moon and More”

And lastly, friends, every day is so precious (even if you can’t smell the coffee percolating!)…. I rode around the woods on my horse again: something my health did not allow for the past several winters.  I was awed by the perfection of it. I guess it reminds me to remind you all to sign your donor card, (if you haven’t already) and tell your family about your wishes to make a difference and save a life.

One in a Million…

Once again I’ve been told by  Doctor that I’m “one in a million”… and that STINKS, or in MY case it DOESN’T stink. In fact, nothing has smelled or tasted to me since I had a cold in December. The cold knocked out my sense of smell: the way a cold sometimes does. I thought it was going to last a few days, but though the cold is long gone, it’s been two months since I tasted a damned thing.  I can suck a lemon, I can eat jerk chicken or anchovies.  I can’t smell or taste a damned thing. Meals appeal to me on a strictly visual, textural, or in my case memoral way.

The ear nose throat Doctor today voiced his un-hopeful opinion that the nerves have been damaged, by the virus. “I’m afraid it’s not good.” he said, and added that he’s not holding his breath that I will ever smell.  He says of the millions of people who catch a cold, he only sees about five a year with my complaint. Which makes me — you guessed it– one in a million.

WHY IS IT ALWAYS ME?  (I can hear strains of Frank Sinatra’s classic “everything happens to me…” as I write this.)

While some of you may say, “what have you got to complain about, you got lungs!”  I have to say this:

Smell and taste is an essential human sense.  We were in an antique store on the weekend and Tom had to tell me, “it’s a good thing we left: it smelled musty in there and I was worried you shouldn’t breath in that air.”  Then there was the time I was burning some food (& nearly the house down), and had NO IDEA until the smoke alarm went off.  Then there is when we eat out & I can’t tell how sweet something is and I improperly dose myself with insulin (remember, transplant has turned me Diabetic)…. these are serious things that the sense of smell/taste are there to help with. Without them,  I am more vulnerable: I could melt all my spatulas on the stove top and never know! Moreover I can damage my kidneys (already under stress from anti rejection medications) by letting my blood sugars get too high.

It’s no joke.

Sure, I won’t be smelling skunks, or Henry’s farts, or puke ever again…. but take a moment and think of all the wonderful things I won’t be smelling: fresh cut grass, spring, baking bread.  I really have to wipe a tear away about the food smells and tastes though. My whole adult life eating was a chore, because of my failing lungs, eating thousands of calories a day was the norm, and I hated it: it was like force feeding.  Since transplant I have miraculously had an appetite again (I’m active enough to warrant one again). It’s fair to say I began to LOVE food.  I had taken up cooking, was well on the road to becoming a “foodie”….

Now, for my sense of smell and taste, “the rest is silence….”  Snuffed out. That’s it. Sorry.  But at least you can breath.

Yeah, I know. I KNOW.  But it just goes to show: I am always that ONE in a million patient who gets the weird side effect, the crazy infections, needs a lung transplant because of a rare genetic disease. Catches a run of the mill virus and can never taste anything forever more. Ever.  (I wonder if the transplant medication is to blame? As you know, it has weakened my bodies ability to fight illness…)

I asked, deseperatly, “isn’t there any medication we could try?” The Doc informed me that I’m already on it — prednisone– for transplant.  There is nothing left to treat this with. (Indeed, if anyone has any experiences with a similar phenomenon, please let me know, even annecdotal stories of recovery would help.)

I think I am slightly in a) denial, b) mourning.

Basically this Doctor just told me he doesn’t hold out much hope of me ever tasting anything ever again. What? No Christmas pudding? No  sweet berries? No juicy roast? No… nothing?

That stinks.

First Week

Beaumont & Tom from my perspective

Tom has now been a horse owner for a week, but even yesterday it was still sinking in. While were were out on a snow ride I heard this little voice from behind me say, almost in disbelief, “Alex…. I  have a HORSE!”  It’s great to see Tom bonding with the big grey.  He looked fantastic in the ring on Friday, and was a doll in the woods on the weekend. Versatile and handsome!

Personalitywise he and Gypsy seem to get along, though he’s somewhat cool around her, if not aloof… at first his indifference to her forward pony advances drove her mad, but now she’s keeping her distance from him: she’s just letting him have his space. But they walk together nicely as a team, which is good, owing to their size differences. They seem to know that we are all a unit.

I have been busily working away at singing.  I am going to press on another run of Live In Montreal, which is always a good thing, to sell out an album. I’ve been working equal measures at both jazz and country gigs.  We played to a very packed crowd at the Dovercourt house for a special swing dance on the weekend which had the best dancers in our country and even some from the US of A.  Spontaneous cutting contests were happening, and some of my favorite leads were there: it fairly killed me to have to turn them down, but alas, the lindy hop has a twist in it that my knee just isn’t ready for.

The DAKOTA Sunday night shows have been chugging along: it’s really a great way to spend Sunday dinner: tasty food, and good live country music? You can’t go wrong!  I am SOOO  keen to have my blog readers come out to the Dakota shows and to shake hands in person: I’d love to meet you all, after reading your comments for so long! (249 Ossington, Toronto)

We’ve also begun a series at the Reservoir Lounge with my jazz band The Alleycats. We will be playing the FIRST TUESDAY of every month, from 7-9pm (Doors at 6:30), $5, Wellington Street East at Church.  AS I mentioned in a previous post: this is one of my absolute favorite swing rooms to play.

That’s all for now!

BEAUMONT ARRIVES

On valentines day, after months of searching, Tom finally got to welcome home his new horse: everyone, meet BEAUMONT!

Beaumont, first day!

Tom is like a kid at Christmas: it was so wonderful getting to see him standing there as the horse came off the trailor at our boarding stable.  Beaumont backed off calmly, curiously looking around, and was swiftly handed over to Tom: a momentous moment that had my heart singing! As he led him into the stable he gave one tiny whinny: sort of like a big truck with a little horn!

He swiftly commenced to settling in. He sure can eat. He got a stall right across the aisle from Gypsy, and so she could see all the curfuffle and had her ears pricked at all the goings on.  A parade of keen and enthusiastic friends came by saying things like. “oh! he’s adorable! Look at his beautiful tail! Holy cow, look at his feet!”  Through all of it he happily munched, and curiously looked around.  Eventually he wanted to get a more in depth look, and so Tom gingerly walked him around the aisles, which is really when he made the first meaningful nose-to-nose contact with Gypsy, who was beSIDE herself with excitment to meet him.  She did a couple of her patented girly squeals and he was very tolerant of her!

Meeting each other!

Next Tom let the horse run around the arena for a stretch, and following that came a play session. After only a couple hours of bonding time, the 8 year old Percheron/Thoroughbred gelding was following around my husband LIKE A DOG! No lead line, no hands.

Clearly they will be great friends 🙂

As an aside, I had wanted to buy myself a similar such horse just before my health began to decline, in the mid-2000s. I wanted a horse I might take hunting, but I wisely backed down from the idea when I considered my possible near-future. To be clear, THIS IS TOM’S HORSE, although I will ride it a couple days a week (I’m the “exercise rider”!)  However this acquisition, this step, this bookmark in our lives is very celebratory: it speaks of having come through the rough times, and while there may still be roughness ahead, this wonderful new thing seems like the most wonderful reward I can imagine for Tom: with any luck, a little  piece of pure happiness.

SQUEEEE!!!!!

Busy Girl!

Hi folks, you’ll pardon my absence: In the past seven days I’ve had five gigs, spent 12 hours on stage, been riding lots, and had been giving 6 ivs a day.  PLEASE VISIT THE NEW www.alexpangman.com & read on below for details of my recent history:

Tonight I found myself in a strange time warp.

I was booked to play the Reservoir Lounge, a place I have not worked in years…not since before the city went non-smoking and I let go of my residency there to the betterment of my health.

History has happened since then.  Couples have met there, fallen out of love, danced, dined, wined, drank, scrapped, and through it all, The Reservoir, like some curious island rock stands through time, unchanging to the naked eye!

Well, standing on stage there tonight was like standing in a strange time continuem.  The room itself is unchanged. The piano, still slightly out of tune, shiny and black, just waiting for my drink to slide off of.

And so there I sang.  In a room in which I have sung before,  albeit with different lungs.   A room in which I have hoped, flirted, despaired, and hoped some more. A stage on which I sung myelf hoarse from diseased lungs. And a stage that I now sang from with beautiful lungs, renewed. Sure, a few of the songs were the same, but the woman, the woman herself on stage was so much different.

Or was she? I’ve certainly entered the second phase of  a female vocalists vocal sound. Gone is  the girlish trill –I miss it, but do not resent the new deeper, more knowing voice that replaces it. And while my spirit is broadened, it is still in essence no different.  (Though, perhaps it feel more joyous  with the love of a good man behind me.  Family, love, gifts.)

Time…. it swoops in when you’re not looking.  Does it change you?  Who can say.  Doesn’t time change everything? For as I sang tonight: same room, same band, same woman, parts of me *are* different.  The faces in the audience like a parade of faces from years past, and some new ones, mimicked what I was feeling inside.  This strange confluence of old and new. New. New lungs! New beginning in a familiar room.

I liked it.  And as I sang –not once stopping to cough– I thought, “I love nothing more than singing here, right now, in this moment!” I fairly beemed! Some danced, some chatted, some listened reverently, some went out on a limb. It was perfect.  I loved the musicians, the music, everything. I thought, “I just love this more than anything!”

But then, I think that very same thing when I play with my country band. I think it when I ride my horse or spend time with my husband.

I pray that health never again removes me from the Reservoir, or from any such place I enjoy visiting. I hope ill health never again removes me from my life, and loves… and if it does, well then, I had today! I HAD TODAY.

******

Well,  now it’s tomorrow night now and I’m still reflecting on how great last night was, seeing everyone, being there — on stage — singing. Clearly. Easily. What a tremendous gift.

I rode my horse today, another tremendous gift: bareback crunching along through the snow, but warm on my toaster pony! This winter and this transplant have provided me the pleasure of returning to winter snow riding. With my knee injury, however, skating and skiing will have to wait.

And then, at home tonight I pulled Tom’s clarinet from the closet, put it together, and then, my friends, I BLEW ON IT! The dog was horrified, I was horrified! It was awful! But after a few minutes of sqwacking I was able to play a scale. Holy cow: I PLAYED THE CLARINET! I could feel the back pressure filling up my lungs, could actually feel their walls, (something my surgeon said was fine).  Finally, that recurring dream I have of pulling out the “licorice stick” has come to fruition. Now, if only I could play more than a scale!

It’s been a few weeks and people keep asking “where have you been! Why no post?”  The answer is that I’ve been busy as hell with
a) finding Tom a horse (or “horse shopping” as I like to say. Another beast being examined for possible purchase soon)
b) lots of gigging/singing
c) giving myself a whopping six iv infusions a day for a chest infection which came as a result of my December cold.

But I’m feeling good. Lots of energy to ride and sing and do it all.  My oxygen saturation at the clinic today was ONE HUNDRED PERCENT!

The knee is coming along also despite the tears in it which I can blame on my newfound dependance on prednisone to prevent rejection.

Oh, and I had the extreme pleasure of singing for the Lung Association‘s event “Breathe” which was a wonderful evening of music and health care workers (doctors, researchers, nurses etc etc).  My band played, and then I gave a brief talk about my story. I kept meeting Doctors who along the way have seen me inside and out.  It BLEW MY MIND that both my CF Doctor (pre transplant) AND my post transplant Doctors were all at the gig.  That they get to finally HEAR the vocal chords & lungs they’ve so often SEEN on bronchoscopies! One man even came up to me and said, “I haven’t seen you since you were flat on your back in the ICU post transplant!”  (My immediate thought was that I probably sound better without all those tubes down my throat)  Anyhow, it was a great night of music, surrounded by supporters of lung health, the public, doctors, nurses, etc.  I laughed that the event was sponsored by a drug company.  I’ve been sponsored by the drug companies for years! Or is it the other way around?! Hahahaha!

And wonders of wonders, Trillium Gift of Life announced that 2009 was the BANNER YEAR in ONTARIO for organ and tissue donation! THE BEST YEAR OF THE DECADE!!! It was a good one, with lots of publicity from the Sick Kids baby-heart story, to Natalia’s near-run transplant miracle covered by the Star & CBC, and the efforts of yours truly. All those  articles might seem like drops in the bucket, but it only takes one person signing their consent for it to be worthwhile. Don’t forget that I’ve long hidden from the glare of the media with my health story, so to know that Transplant numbers were way up this year makes me feel happy. As if “coming out of the CF closet” had some positive outcome.

And, on that note, congrats to both Garry and my wonderful mentor Amy who both got their transplants this year !!!!  This is Amy’s second time around, and she was a great support to me post transplant: I sent her a Lickin’ Good Fried t-shirt for when she’s up and at’ em again.  Such news always gives me goosebumps. It proves to me that miracles CAN and DO happen, and we can make them happen!

Please do try and make it down to one of our many gigs,  a list of which is viewable on our NEWLY RE-LAUNCED www.alexpangman.com

*ps: Of note; Alex & Her Alleycats play  FIRST TUESDAYS of the month @ the Reservoir, 7-9 pm $5

*pps; Of ONGOING note, Lickin’ Good Fried have had our Sunday run @ the Dakota extended. We are now the on-going Sunday night supper band! 7-9pm, $pwyc