Prose for POEMS

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 June 17 is the first anniversary of my stem cell transplant - my first birthday, if you will. I thought I would do something a little different with my blog to mark the occasion. Instead of giving you an update (things are pretty great right now), I'm going to look back over the last six years with a slideshow.  I've included the good, the bad, and the ugly (I’m not at my best in many of the following photos) in order to give a little snapshot (see what I did there?) of what life has been like adapting to this crazy illness called POEMS. It is also meant as a testament to perseverance, a positive attitude, the unwavering support of family and friends (human and four-legged), medicine, and physiotherapy. It hasn't always been easy but has absolutely been worth it. In the midst of all the chaos I have had some really great times and met some fantastic people. I'm doing things now that I never imagined a few years ago. I hope that a few years from now I'll be able to...

I'm celebrating a pretty major milestone this week, something that has been a long time coming. Nope, not the dog walking - that's so two weeks ago. I had my portacath removed! For those of you who don't know what that is, I'll explain... A portacath (port) is a central line that is surgically placed in your chest for infusions. Scott called it my usb plug. If you need a lot of infusions (chemo, IVIG, etc) and have crappy veins like I did, a port is a great thing. However, it is not without risk and hassle. Mine was 'installed' for IVIG back when they thought I had CIDP and needed endless infusions. I kept it as backup for the stem cell transplant and have been waiting to get it out since. You may recall that my first port got an infection and nearly killed me in 2018 (I wrote about it here ). A port needs to be used or at least flushed every 28 days, so you can never really forget about it. Needless to say, I was over the moon when I finally got the call two we...

Yesterday I accomplished a major milestone. No, I didn't run or jump or even try snowshoeing. I didn't knit anything or write with a pen, on paper. I also didn't suddenly lose 15 pounds or wake up with normal hair. I purged my shoes. You know, my heels, sandals, ankle boots, loafers, chucks, and hiking boots. Shoes. Shoes that I haven't worn in six years but have held on to in the completely unlikely and implausible chance that I'll break free of the neuropathy, numbness and semi-paralysis. That all changed, unexpectedly, late yesterday morning. Yesterday, being Saturday, involves completing at least some of the mundane chores around the house, like cleaning. The basement was this week's mission. I started by putting about a year's worth of empty laundry detergent bottles into a recycling bag. While standing by the washer I looked over and saw the dusty rack holding my precious old shoes and thought: It's time.  I went back upstairs and grabbed 2 garbage...

 I had my three-month check-up last week and figured I should write a corresponding three-month blog update. I'm not going to spend time writing about the check-up though because THERE IS NOTHING TO REPORT. That's right, for the first time in years I had an appointment that really didn't need to happen. Everything is as it should be, which is just great.  I'll start with a belated Happy New Year! I hope you and your families had a nice and relaxing holiday. We had the best Christmas we've had in years. Scott and I (and Barney, of course) spent a couple of weeks just hanging out, eating, avoiding emails, and enjoying each other's company. We also spent a fair bit of time with my parents and their dogs. I was spoiled rotten, which was very nice;)  Life is falling into a relatively boring and stable routine and I wouldn't have it any other way. Well, I'd love my full mobility, energy, career, and hairstyle back, but let's not get carried away. I spend m...

 It's been 136 days since my transplant and I just got my report card, so to speak. I'm thrilled to announce that everything is looking good! For the first time in over 5 years I do not need to go to the hospital for regular treatments (other than physiotherapy). I'm still healing and recovering and not about to climb any mountains, but for once everything is looking up. It can take up to a year to determine how much improvement I will see - Stay tuned! Part of me is waiting for a shoe to drop - I'm just not really used to positive medical news (haha). So, what is life like 4 months after a stem cell transplant, in the middle of a pandemic? Not terribly exciting but that's OK. I'm cooking and baking up a storm some days and recovering from said storm on others. I discovered the Great Baking Shows (Canadian and British) while recovering and am now a little obsessed. I'm getting back into physiotherapy and trying to get out walking as much as possible. This al...

It's been over a month since my stem cell transplant so I guess it's time to try to sum it all up for a blog post. First of all I'm happy to say that I survived. It was an experience that I don't particularly care to repeat (even though I may have to in a few years) but now that I'm on the other end it wasn't too scary. Here's what happened... The day before the actual transplant I got a high dose of chemotherapy. The dose is so high that the stem cell transplant is actually necessary to reboot your immune system. In fact, most, if not all, of the unpleasantness to follow is a result of the chemotherapy. The transplant itself was remarkably quick and simple. I was in a room with a bed, a nurse, a doctor and a technician. They defrosted my frozen stem cells (looked like an ordinary bag of blood) and then hung it from a hook on the ceiling. The bag was attached to my central line (a kind of permanent IV in my chest) and then gravity-fed into me. It felt we...