bravestredhead

Alex…the bravest redhead

In Uncategorized on November 5, 2008 at 7:36 am

The bravest redhead, photo by V. Lions

Hi All,

If you are reading this, chances are you are one of our friends who have known of Alex’s valiant and lifelong battle with Cystic Fibrosis. You’ve also made your way here because you’ve been apprised of the fact that Alex has finally received the lifesaving gift of new lungs from a very special donor. Over the next few days, weeks, and months I (and before long Alex) will be keeping you up-to-date with Alex’s recovery and life post-transplant. As I am sitting here writing these words Alex is in the ICU ward of Toronto General Hospital. I know that she would much rather be at home typing these words to you if she could. And in truth, she’d probably do a much better job of it. But for now, let me be the one who speaks for the bravest redhead, the love of my life, my beautiful wife, Alex.

Bestest,

(Colonel) Tom Parker

Life In A Pandemic Post Transplant

In Uncategorized on March 31, 2020 at 8:53 pm

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By now we are all feeling stress from, disruption from, and both alarm and concern about the COVID 19 virus sweeping the globe.

With “social distincing” and “stay home” recommendations by government, as well as hand washing and “germ” hygene being taught to the public at large, I feel like I have a good grasp of these skills from my lifelong attempt to avoid colds and flu. This is not to say that I am infallable. A few years ago I had the swine flu (or was it the bird flu? I was so febrile I can’t remember.) It was awful.

So now I wait it out. I wait. I’ve done that before! In my life surrounding transplant, the notion of “time” has always beeen weird. We count the days waiting for transplant, and we always count survival post transplant in months. How many months will I be held back from life? It is a necessary evil that I stay home so that I can have a life free from the virus. It is what it is.

I take strict isolation very seriously, and I’m old hat at it! Aside from gigs, and riding the horses, I practice social distance for most cold and flu seasons. In fact April is annually when I start to relax and go out in public more, but not this year. This “bear” is staying in hibernation! For someone like myself with an immune system that is weakened by anti rejection/ immune suppression medications, I am at further risk. Also, my lungs are in the age group most affected by this virus. Oh, and it’s a breathing virus and there’s no way I want to ever be on a ventilator again! And that goes for you too!

We are all in this together: don’t go out if you don’t *have* to. You might be a carrier and not know it. Staying home means working from home if you can (if you weren’t laid off), eating at home, not seeing friends in person but using the telephone (or video conferencing) in the place of coffee dates of happy hour.

Sadly for me it means no horses. Those of you who have followed the blog know that even with an oxygen tank, I was still riding up until the day before my transplants. Not riding, for me, is very weird and we had to quit cold turkey. We are entrusting our farm family to look after our horses and they send us pictures and text messages with reports. It’s a relief, but a big big change in our lives. Basically horses and music define me…. so now is a time to prioritize health. For now, midnight walks with Tom on deserted city streets replace rides on my pony.

I’ve easily filled the days with music, and am hatching several on-line projects, one a remote recording session project, lots of practicing, and of course I can keep recording my radio show Swing Set (available Fridays at 6pm EST on http://www.jazzcast.ca), and rehearsing/learning new songs. Between that and sanitizing all the groceries as they come in the house, I’m busy!

I’ve spent a fair amount of time canceling gigs, up to and including a tour in Alberta later this year. You have to understand that for musicians, not having an audience is very worrysome. Many musicians live on the edge, financially. An undetermined time with zero work is a big worry, as I’m sure it is to lots of people who’ve been laid off. I can still sell albums or do live concerts (of a sort) from my home, but I worry about my sidemen and I’m trying to think outside the box and come up with some revenue stream there. I spoke to the Toronto Star about music in time of pandemic.

Luckily, we have the internet, and Tom and I did our first “live stream” internet concert last weekend to mark what would have been our monthly performance at the Cameron House. It really did help us to a) have a goal (we each had to practise for), b) take a shower and get dressed up, which helped us to feel a quasi sense of “normalcy” and c) we had so many viewers and comments that it enlivened us to see in real-time we were reaching so many, and that it brought joy to everyone. It was also good to see Tom come alive again. He is a more social animal than me, and so he’s struggled from time to time without having his friends to see and let off steam with. You can see his home haircut and the concert which is archived here. 

If you want some further internet entertainment, I just finished making a mini documentary about our transplant story along with my wonderful and well spoken Mother that Trillium Gift of Life published just prior to COVID-19. It’s an important health story that I’m glad to have helped with. Please share it, here’s the link.

Remember, stay home, wash your hards, don’t touch your face, keep your chin up, be kind to yourself and check on others on the phone or by email. Read a book. Listen to music. Follow legit news sources such as the CBC and try to limit screen time to shock news outlets. This too shall pass. We just have to stay positive in the meantime.

Love Alex.

PS a huge thank you to front line workers, hospital staff and essential service providers! TGH have taken the big step in putting all lung transplants on pause temporarily. Let’s flatten this curve NOW so we can all get back to life.

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Twenties Times!

In Uncategorized on January 20, 2020 at 9:14 pm

IMG_2939.jpgWow, it is now the year 2020! This makes me happy for all sorts of reasons. I love the music of the (nineteen) twenties, so I’m loving some of the filmic and musical revivals of that fertile era of songwriting, and style! The Art Deco style. The flapperette. The vamp.

One of the other reasons I’m glad to see the 20s is that I can look back on the last decade as the one wherein I didn’t cough. For so much of my life I rattled off intimidating sounding coughs all day. Right before my transplant, my life was winnowed down to mere survivalism, trying to staunch the flow of endless physical losses. Eleven years ago I got the gift of life.  New lungs. Since that time, I’ve barely coughed at all.  This is a miracle.

The 2010s were the decade when I could finally breath easy life into my artistic ideas (without the niggling interjection of exlosive coughs.) I toured more than ever, and made many recordings. And let me point out the (not so?) obvious: it’s way easier to sing when I’m not coughing all the time! It’s also much easier to do everything, and I try and not take a day for granted. Although, I suppose getting caught up in the minutia of daily living is also an honour I am glad to experience, along with the wondeful things like recording new music, singing the main stage in Montreal, or traveling to Italy (all of which I did in 2019.)

As we head into the 2020s there is good news for CF patients as more gene therapies become available to hopefully prevent the loss in lung function that precipitates the need for lung transplant. (Obvously transplant is a very last treatment option, because outcomes are never assured.) A new medication called Orkambi is making headlines: it’s a patch for the misfiring gene that 90% of CF patients carry at least one copy of. It essentially halts the coughing. No more phlegm. No. More. Cough. I almost wept when I heard this news and what it means for patients struggling today to breathe with Cystic Fibrosis. And, it needs be said, I flipping love scientists!!!

Now we await it’s use in Canada. The FDA has already approved it in the states. Come on Canada — don’t drag your feet here. People with CF lung disease need you to pass this ASAP! For myself, since my lungs don’t have CF genes anymore it won’t impact my lungs. However, it could help my other CF symptoms, liver, spleen, pancreas, etc. (Betcha didn’t know CF was not just a lung disease.)

For me, today, I’m happily dancing the Charleston in joyous abandon, knowing tomorrow the anvil of rejection (or transplant related illness) may fall on my head. If we could avoid the need for transplant, I think we should. Come on Canada! Pass & fund this medication!!!!Screen Shot 2019-11-11 at 2.03.01 PM.png

Love,

Alex

Check out our new music video by clicking this link!

Both Alex’s singles went to #1 on the iTunes Jazz Singles Chart in Canada, thanks to organ donation, and of course our fans ; )