Almost 3 Months Post Transplant

I’m posting this a second time (apologies) because my server had some migration issues and wiped this post completely off my site, along with the lovely comments (thank you for those) made by some of you. Ahhh! Technology!

It’s difficult to believe that almost three months have passed since my stem cell transplant. On a scale of 1 to 10 (10 being the best), I’d say that most days I feel that I’m at a 9.0 or 9.5 in terms of strength and energy.

On July 17th I had my central venous access device (central line) removed. After having it in for three months, that was definitely a milestone in this process. The removal was not a pleasant process. It required five shots of lidocaine in my chest and a lot of what-felt-like sawing and cutting of the skin that had grown around the “cuff” that was keeping the line in place. I’ll have a scar at the site, but I’m trying to minimize that with vitamin E cream. And, at my age, what’s a little scar here or there if you get the chance to live many (I hope) more years?

Aside from still not being a huge fan of food (some foods and smells are just too reminiscent of the hospital) and having only stubble on my head where there should be hair, life has taken on a bit of normalcy. I’m exercising, walking/hiking, riding my bike . . . we even went camping for a few days in our Westfalia. We celebrated our 31st anniversary with our “kids,” from left to right, Marisa, Angelique, and Joel (Ang’s partner). We missed you, Ruairi. (He’s Marisa’s partner.)

Medication-wise, I’m now on a three-month course of a sulfa drug, which prevents me from contracting pneumocystis pneumonia, an extremely serious type of pneumonia caused by a yeast-like fungus. Apparently, stem cell transplant patients (all individuals with low immunity) are at a higher risk of contracting pneumocystis pneumonia. The sulfa drug caused me a great deal of nausea in the beginning, so I had to start taking anti-nausea medication again to combat that. So, you take drugs to prevent something, and then you have to take more drugs to deal with the side effects of those drugs. And those drugs that you’re taking to deal with the side effects of other drugs come with their own set of side effects. Anyway, I’ve started weaning myself off the anti-nausea meds now that my body is accustomed to the sulfa drug.

I have more treatment ahead of me (two more rounds of chemotherapy, which will start later this month), and I’ll have to start on a vaccination program soon (the stem cell transplant wiped out every vaccine I’ve ever had in my life), but in the meantime I’m trying to enjoy these lovely summer/fall days as much as possible. We’ve been back to our condo in Radium a few times (most recently with my dear friend Kathy from Toronto), and it’s always a joy to be in the mountains. We’ve even been stand-up paddle boarding, and I love being out on the water.

Paul and I are working on 2024 Misión Claridad. In October, he’ll head to Cuenca, Ecuador with 13 others to perform free cataract surgery and give free eye exams and eyeglasses. I’m so sad that I can’t go this time, but having no immunity means it’s too risky for me to travel yet. I’ll be with the team in spirit. Next year I’ll be back. I do miss Ecuador.

I miss a lot of things. But, I’m nearing the end of this year of treatment and getting better and counting on doing more of the things I love. Once I have some vaccines behind me, I’ll feel a bit safer in terms of getting out in the world. Sure, I think about my mortality a lot. I know that this year of treatment won’t cure me, and it breaks my heart to think that I won’t live as long as I perhaps thought I would. I won’t pretend that I don’t sink into sadness at times, but I’ve decided to focus on living a good life and doing good for others.