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.

Paul laughs at me when I say, “I’ll help cut tomatoes, but with a butter knife.” He usually shoos me out of the kitchen, saying that’s more like “tearing” a tomato. I’m so glad he likes to cook. If not for him, I think I’d starve. And not only because I can’t help much in the kitchen yet, but also because food is a necessity these days, not a joy. I eat because I have to, not because I enjoy it.

So, I’ve been home for just over a week. Has it been easy? Has it been getting any easier? No! I can see that the road to recovery is going to be a hard one. There is nausea. There was one night of intense vomiting. And there is intense exhaustion, which I find the hardest to cope with. Apparently, this exhaustion is “normal”—but how can anything be considered “normal” on this journey? It’s an exhaustion I’ve never known. It forces me to lie down in the middle of the day or early evening. It makes everything an effort.

The only time I’m not exhausted is between 2 am and 4 am, when I wake up and can’t go back to sleep. I’ve been reading, painting, writing … sometimes just walking through the house. I’m not sure what exactly is causing this insomnia, but for someone who has always been a good sleeper, it’s frustrating. I yawn. I feel sleepy. But, the minute I crawl back into bed, I’m wide awake again. Did my two and half weeks in the hospital mess up my sleep? Are the rest periods I have to take during the day making it impossible for me to sleep through the night? I have to hope that this will pass.

In the meantime, summer is a joy, and I do love our backyard with its flowers and small garden.

A bit of a heatwave is coming in a few days, with 35 degrees C expected on Wednesday. It’s our 31st wedding anniversary on July 8th, and I owe so much to Paul, who has stood by me through this treatment and been the absolute best shoulder to cry on. Life is marching on, and I’m determined to get past this post-hospital period and enjoy a long remission from this disease.

I’m also looking forward to posting about things not related to my cancer journey. Soon!

Now, here I am 15 days post transplant, and I feel as if time has slipped away. Some of those days were foggy bedridden days of nausea and bad dreams; others were days of half lucidity. Seems that I’m following the typical trajectory of the stem cell transplant process. Here’s what I can remember of this ride, based on notes I made along the way.

Day -2: Admission Day
It was a day of education sessions, visits from nurses and the transplant ward physician and the pharmacist and the clinical trials nurse . . . I’ve lost track of all the information that was thrown at me. It had me in tears. That day, I often wondered if this was all worth it. At times I wanted to say, “I’ll pass. This is going to be too hard. I’ll take my chances.” I know that this is what the previous five months have been leading up to, but they don’t tell you the hard stuff until you’re here in the hospital. I just wanted to run away! In the evening, it was hydration time—a litre of fluid through my central line, in preparation for the delivery of the high-dose chemotherapy the next day. Then more tears. Then bed.

Day -1: High-Dose Chemotherapy Day
This was an exhausting day. Starting at 10 am, there was more hydration, consisting of another litre of fluid, followed by Melphalan (high-dose chemotherapy) diluted in another litre of fluid, and then another litre of fluid. The fluid was to protect my kidneys from the toxic effects of Melphalan. Then Lasix (a diuretic) to help me pass all that fluid and reduce the risk of fluid overload. I spent a good chunk of the day in the bathroom, with my IV pole. During this approximately-6-hour process, I had to suck on ice chips continually to prevent mouth sores, one of the side effects of Melphalan. This added seven large cups of liquid to my already fluid-filled body.

Melphalan is an extremely strong chemotherapy drug that attacks dividing cells in the body. Cancer cells, like the cancerous plasma cells in my bone marrow, divide rapidly, so the Melphalan targets these cells. But, unfortunately, it also attacks healthy cells that are dividing. That brings a host of side effects, such as nausea, vomiting, and diarrhea, all of which would eventually come, not that day, but a few days later.

Day 0: Stem Cell Transplant Day
This was, surprisingly, far easier than the Melphalan day. Canadian Blood Services, which had been safekeeping my stem cells in some sort of freezer, I presume, delivered my stem cells in the morning.

My stem cell transplant was scheduled for 1 pm, so at noon I started to receive Benadryl to prevent a reaction to the preservative in the stem cells. I declined the Ativan; I dislike taking so many drugs. Ha!!! When you’re on this treatment regime, it’s nothing but drugs. (Prior to my diagnosis, all I took regularly was Vitamin D, the sunshine vitamin.)

Frozen at -190.7 degrees Celsius, my two bags of stem cells were taken out of the canister and put in a warm bath to thaw. Infusion time was about 10 minutes per bag. I felt nothing except drowsiness from the Benadryl. I had a long afternoon nap.

Days 1 to 11 Post Transplant
Wow! Some okay days. Some horrendous days. The side effects of the Melphalan struck hard, the main ones being nausea and diarrhea. The anti-nausea meds became a four-times-a-day routine. Talk of what my bowel movements look like became routine. I lost my appetite. I came to dread the meal trays coming from the hospital kitchen because nothing smelled good or looked appealing. I tried Ensure (a meal replacement drink) only to vomit it up an hour later. These were days that I stayed in bed, feeling as if I was never going to climb out of the misery. On Day 7, I gave up making notes in my journal because the days were all the same—bad.

Days 12 to 15 Post Transplant
The fog lifted on the afternoon of Day 12. No nausea. Minimal diarrhea. Some energy. I feel like I’m getting close to being myself again. My appetite has come back, although I’m having a tough time with the hospital food. I dread the supper meal trays. Even the smells are enough to trigger my gag reflex. I’m not a picky eater, so it’s discouraging for me to be having such issues with food. Thanks to Paul, who spends his days with me, we’re bringing in outside food (it’s allowed) for supper, so I can eat again. We go with something that I can think about without gagging. So far, it’s working.

So, what’s happening to my body? Well, the chemotherapy took my blood counts to super-low levels. The job of my transplanted stem cells is to create new healthy blood cells. The process is called engraftment. The cells that are the most closely monitored are my white blood cells, my neutrophils, and my platelets. The former prevent infection; the latter prevent bleeding. They are all on the move in the upward directions, so engraftment is indeed happening.

Every morning at 5 am, my nurse wakes me up to draw blood, so that by 8 am the results are in. My platelets are the determining factor. Once they hit a certain level, I can be discharged. In the meantime, there is talk of a day pass that will allow me to get out of the hospital for a day, and I’d gladly take that for now. I would love to go home and sit in my backyard. It’s Canada Day weekend, and summer is calling me!

A few years ago, I decided that it was time to blog. That didn’t go well; I only wrote two posts. Seems that the time wasn’t quite right back then. I’m giving this another go; the time might be right this time. I’ve removed those first posts from way back and am starting fresh. Here goes.

Those of you who know me well know that my husband (Paul) and I devote a great deal of time to doing international volunteer work. We’ve been carrying out projects in Ecuador for many years. In the fall of 2022, after months of planning, we launched Misión Claridad, an ophthalmology and optometry mission to Ecuador. We took a team of eye professionals to the city of Cuenca to perform free cataract surgery and provide free eye exams and eyeglasses. In the fall of 2023, we went again, and we’re now planning a third mission for the fall of this year (2024).

In the health zone where Cuenca is located, cataract surgery is currently only performed in private clinics, at a cost of approximately $2500 USD per eye. It’s out of the reach of many individuals. So is an eye exam. So is a pair of glasses. I’ll write more about how we’re working to turn this around. We’re also working on a new project, to address another health issue in Ecuador. More about that later.

I’m personally on another mission this year—an unexpected, unplanned mission. In December of 2023, I was diagnosed with multiple myeloma. It’s a cancer of the blood, more specifically of the plasma cells (a type of white blood cell), which live in the bone marrow. Multiple myeloma is not curable, but it’s treatable. With aggressive chemotherapy followed by a stem cell transplant, I’ll hopefully go into remission for 7 to 10 years before I need more treatment. I’ll be fighting this cancer for the rest of my life, however long or short it will be. My oncology team likes to point out that multiple myeloma is not a life-threatening illness, but a life-limiting one. I know there are no guarantees, but I have hope that I’ll live to reach my eighties.

Did I have symptoms? No. A routine blood test, part of my annual physical, revealed abnormal blood counts in certain components of my blood. My GP told me that it was beyond his scope of expertise, and I’m oh so grateful that he referred me to an internal medicine specialist, who took his time explaining to me what was going on and subsequently referred me to an oncologist who specializes in hematological cancers.

So, while working on our Ecuador missions, which give me (us) such a deep sense of purpose, I’m also on a mission to get through what amounts to almost a full year of treatment. I’ve had four rounds of chemotherapy, which has been manageable and hasn’t made my hair fall out. I’ve had a central venous catheter (CVC, also called a central line) placed in my superior vena cava (the large vein that goes to my heart). The day that the CVC was surgically placed may well have been the hardest day for me physically so far. Every day has been an emotional challenge.

Through the CVC (mine has three lumens, which are the tubes that hang out of the body) I’ve had my stem cells harvested through a process called apheresis. Tomorrow I’ll be admitted to the hospital for what will be the hardest part of the treatment—the stem cell transplant. First, through my central line, which I’ve come to accept as necessary but hate nonetheless, I’ll receive high-dose chemotherapy. My oncology team says this chemotherapy drug will be a nine out of ten in terms of strength and toxicity. (Today, Paul shaved my head, since my hair was destined to fall out within the week anyway.) After the high-dose chemotherapy, I’ll receive my harvested stem cells. I’m told that I can expect to be in the hospital for 2 weeks minimum, longer if necessary. At times, I’ll be in total isolation. At other times, family and close friends can visit. (I haven’t spent the night in a hospital since I gave birth to our younger daughter, 28 years ago.) When I come out of the hospital, I’ll have to live in a virtual bubble for 3 months as my transplanted stem cells differentiate into the healthy blood cells I need, and I start to regain immunity. Then I’ll need more treatment, and then … well, I’ll save that for future posts.

Am I scared? Absolutely. Sleep, which has never been an issue for me, is now eluding me or is plagued by dreams of being in the hospital. There are risks with all of this, and while I’ve come to accept them, I’ve also come to accept that this is my only shot at living the life I want to live for several (hopefully many) more years. I do love life, and I have so much more to do before I leave.

There, I’ve put it out there. I’ve moved past the denial and the anger and the “Why me?” I’ve come to accept that I simply have to forge ahead. And really, many people in the world are faced with challenges much harder than what I’m going through.

In closing this first blog post that speaks to and about my new reality, I have this advice for you. Live life to the fullest. Don’t put off until tomorrow what you can do today. Be a force for good in the world; give back. And most importantly, remember that it’s the people (not the things) in your life that matter the most.

And sure, I’ll be posting more about my cancer journey, but I’ll be posting about other topics as well, because life is about more than this cancer.