And Then, Cancer
There are certain words that you don’t exactly relish hearing from your husband’s mouth.
Like: “WHAT THE FUCK?!” as he’s staring at your naked lower half while you change clothes beside the bed in the morning.
A quick glance down revealed the source of his outburst. On the outside of my upper right thigh: a massive bruise. I had no idea where it came from. It was deep purple, blue, and huge (approximately four inches wide and two tall). I’m clumsy, always have been, so it isn’t outside the total realm of possibility that I bumped it and promptly ignored it. But you would think that I would have felt that one pretty good.
I didn’t think too much of it for the rest of the day. I checked on it periodically, but the next morning when I looked again I wondered if it had actually gotten bigger. I am usually one to dismiss concerns and just wait for them to go away, but this, coupled with the fact that I just didn’t feel right, was perplexing. I wanted to just talk to someone else about it, and so even though we were housesitting in Washington, by force of habit and comfort I called Alberta Health Link. A nurse patiently took me through a list of questions but at that point just advised me to keep an eye on it. At his insistence, I drew around it with a Sharpie so I could monitor any growth.
Later that night as I was crawling into bed I noticed what felt like canker sores on the inside of my mouth. I’ve had them before – a long while ago – so this wasn’t a crazy surprise but it suddenly seemed like five of them that just appeared in a matter of minutes. I was tired, I rolled over, honestly thought about just ignoring them and checking in the morning, but I forced myself out of bed to go and see.
They were not canker sores, but instead blood blisters that had formed on the inside of my cheeks. I returned to bed and we also found a rash of small red dots all over my lower legs. At 10:30pm I called Alberta Health Link again, told a new nurse all of my symptoms and she told me to immediately get to emergency.
I burst into tears at the urgency of her voice. I yelled at Pete to search for a nearby emergency room as I dressed quickly.
The waiting room at the Harrison Medical Center in Silverdale was packed but I didn’t have to wait long after seeing the triage nurse. Some of the others waiting sneered as I appeared to cut in line, but I could never blame them. Other than these odd and unnoticeable symptoms (which Pete and I had already surmised from online searches meant a significant drop in my platelets), I looked and felt fine. And that would be what would perplex the doctors for a couple of days.
The emergency room doctor had ordered blood tests before he even came to see me and the results were immediately alarming. In a normal human, platelet levels are usually 150,000 – 400,000 per cubic millimetre. Mine were at 10,000. By the time I was transferred to a nearby facility in Bremerton in order to receive a platelet transfusion, they had dropped to 7,000. Because platelets are responsible for blood clotting, all of those symptoms that quickly showed up were little forms of internal bleeding. If I had ignored them, any number of things could have taken my life immediately. A spontaneous brain bleed. A paper cut that would refuse to stop bleeding. (You might imagine the heavy cycle of “what ifs” that run through my head regularly.)
I was never allowed to really settle once I was fully admitted into Bremerton. Pete barely dozed beside me on a chair while nurse after doctor after nurse came in to regularly check my vitals, pull blood, and ask me a million questions a million different ways. My main doctor arrived mid-morning (a Canadian!) and I was also seen by a hematologist a little while later. Both of them assured me of the same thing: that I had ITP: an autoimmune disease characterized by a low platelet count. The reason for such a solid declaration was that everything else about me was so normal: my blood cell counts, the regular functioning of my organs, everything. (I had high blood pressure too, but POLITICS.)
ITP itself doesn’t have a known cause; however, it also can be symptomatic of a couple of dozen of other things, and so they were continuing tests to rule all other things out. More blood given, more platelets taken in, and I sent Pete home for the night so we both could get some sleep. In the morning, he was just on the drive back when the hematologist stopped back in to give me news.
I sat on the bed alone, still feeling fine (if only a little tired), while she apologized for the next word out of her mouth: leukemia. Only after taking a look at a smear of my blood could she see the presence of blast cells.
I’m honestly not sure what happened next. I know my hands flew to my face and I was crying; I don’t remember what else she said, and I don’t remember how long it took Pete to arrive afterwards. I do remember him sitting on the bed calmly as my other doctor arrived later to talk about it again. I remember feeling both confused and grateful for his calm while I buried my head in his shoulder and sobbed. I remember apologizing to him the minute we were alone – apologizing for messing up this beautiful life that we have.
He rejected the apology, of course – this is not something I have brought on myself. There is no known cause; my final diagnosis of APML is quite rare. I read an article the other day that said there were only ten cases of it in Australia last year. Somehow, it just found me.
I just wanted to get home. Yes, they tried to get me to stay (upselling: that’s capitalism in medicine!) but while I was well enough to get on a plane, that is all I wanted. They pumped me full of platelets and allowed me to fly out the next day. My mom and brother-in-law met us at the airport and took me straight to the hospital where a bed was kept waiting for me since the night before. I’ve since been surrounded by my sister, my father, dear friends and other family members from near and far.
It seems so surreal to be back in Calgary, the city I’ve had a rocky relationship with for most of my adult life, asking her to embrace and heal me.
Fortunately, my prognosis is very good. As everyone has said, if I had to pick a leukemia, then I made a good choice. The scariest factors are early death if it goes undetected or untreated, of which I am lucky to have found it early and treatment began within a few days. Now I just have to be super careful about staying healthy (all things considered) so as not to risk infection or bleeding of any sort.
Little bruises continue to pop up on my body in random places. I get my blood checked every twelve hours (down from every six hours, as everything is moving in the right direction and/or stabilizing), and my vitals every four or even more often. The site of my bone marrow biopsy is still bruised and a bit sore, as if someone punched me there really hard. I have a purple tube running in a hole in my right bicep through an artery near my heart for easy delivery of drugs and pulling of blood. I think I’ve had five platelet transfusions so far. I get a little cocktail cup full of pills every morning with everything from high blood pressure meds to vitamins to continuous birth control pills so that I don’t menstruate at all. I am putting on weight thanks to the steroids I am on. Every other day I take a massive needle of heavy chemicals and on day nine of my treatment, actual arsenic will be used. I try to get up and walk as much as possible and I have breathing and other exercises I need to do. Sometimes my vision is a bit blurred and I tire easily. I have to cover the toilet with an absorbent pad when I flush so that the toxins that emerge from my body don’t affect my visitors.
(If this is your first stop on this blog, and I suspect for some of you it might be, then welcome to my world of over-sharing.)
My protocol could vary yet depending on what happens, but the expectation is that I will be in the hospital for 36 days of treatment to start with, and then potentially grounded for a year to receive treatment five days a week. So far, so very good, my body is reacting to everything as it should and my side effects are actually not even the worst. I honestly keep waiting for that time to come – for my hair to fall out and for nausea to overtake me – and my doctor says that I could potentially see none of that. Or, it could all start tomorrow. For now, I am taking advantage of what energy I do have, getting outside when they let me, and enjoying my family. Everyone is very optimistic – albeit cautiously – but all I can say is that I feel very very fortunate that it was caught early and that the outlook is so positive.
A Few Additional Thoughts
So yeah, this blog post may be a bit of a mess of random thoughts, but that is basically how I feel in both my brain and body. It’s been just over one week since my diagnosis, and maybe some clarity worthy of memes will even come in time, but for now I just want to answer some regular questions and share initial reflection.
— I’ve had many people ask about my thoughts on American vs. Canadian health care now that I have experienced both. I reasonably can’t give any big insight given my limited experience with either at such a critical level, but all I can say is this: I have felt very, very well taken care of on both sides of the border. Everyone I dealt with in Washington was compassionate, thoughtful, and thorough. The same continues in Alberta. I feel very comfortable with all of my doctors and nurses and am confident that I am getting the best care possible.
There is the matter of cost, though. Pete and I are always diligent about buying travel insurance and so far our provider seems to be on our side, but I am always wary of the existence of some bullshit excuse that will prevent them from paying (I will write more about insurance later once it is settled). I expect (with no real basis for my assumption), that the bill will run in the tens of thousands considering the tests I had done and the specialists I saw. My travel insurance, on the other hand, for a couple of months in the US was less than $300 for both of us. A worthy investment.
The minute I stepped into the hospital in Calgary, everything is covered for me. I am going to be admitted for at least 36 straight days, and then probably on an outpatient program for up to a year (where I will be visiting the hospital five days a week). There is a small bit of additional insurance that Pete and I are purchasing to help cover the cost of some prescriptions, but the expensive chemo treatments will all be covered. Thank you, Tommy Douglas. I feel extremely lucky to have been born in this country for many reasons – and socialized healthcare is definitely one of the most significant.
— So, um, this is kind of a travel blog, eh? This piece of the internet has been our home for almost six years, and that won’t change. More than ever, people need to broaden their own borders. Travel brings empathy, knowledge, inspiration, escape, and more. Sadly, for the next year or so, we won’t be able to personally bring any of that to you. But we want it to be waiting for us when we get back (we are already making “Survivor Trip” plans)!
We’re not exactly sure what will happen in the meantime, but we have ideas. We would like to open it up to other writers with a similar aesthetic of storytelling. We have some other stories of our own from the past that we will try to work in as well. Pete and I will most definitely continue to have a place here, until we can call it our own once again. There’s a lot to figure out.
— The support. THE SUPPORT. I cry at least a dozen times a day, and only sometimes because I enter a wee “woe is me” phase. Mostly it is from the incoming waves of love that just overwhelm. From homemade food to bags of my favourite potato chips to pictures to random notes to being added to prayer circles to games to books to socks to offers of beds for my family to everything and anything. I have never felt so uplifted. I am in awe. I am moved. I feel selfish.
I feel like I am the recipient of so much, too much, and the world right now needs a good dose of the intense love I feel. I will not get political here but all I will say is that I have so many dear friends around the world who are reeling and heartbroken because of recent events. I am, too. And yet at the same time I feel guilty of being the recipient of so much love when so many people need it, like I am hoarding it all to myself. But I promise to turn every little bit of kindness I have received back out into the world in a positive way as soon as I can. In the meantime, please be kind and loving to each other as well.
— And finally… You guys, this is why Pete and I do what we do. This is the scenario that spurred us into action – the desire to fill our days full of living in case our days aren’t many. We’ve personally seen it happen before. And while I firmly believe that this will not be my end, having the words “life-threatening condition” attached to my name does cause me to pause.
But I feel good. And I’m living the life I am supposed to. And I’m so in love. And I’m currently crying tears of pure happiness and gratitude.