One inescapable truth of my life is that I have survived leukemia. Twice, actually. I was originally diagnosed in 2001 when I was in my late twenties. Then I was treated with the standard regimen of high-dose chemotherapy in hospital followed by three years of what is politely called “maintenance treatment.” In 2009, however, I relapsed and underwent more treatment, and radiation, followed by a stem cell transplant.
There are so many issues wrapped up in my life as a cancer patient and “survivor” (this term being one of those contentious issues for me). But what I want to talk about here is the challenge of keeping track of the events, information and experiences of having cancer, and looping friends and family in to the information you want to share. Specifically, I want to talk about two related services – Evernote and Postach.io – that, I think, hold a lot of promise for making what can be an overwhelming time a lot easier.
Making sense of a barrage of information
Evernote wasn’t around when I was first diagnosed and, while I have been an Evernote user since 2008, I wasn’t comfortable enough with it when I was diagnosed for the second time in 2009 to make it my go-to tool for keeping track of my treatments and their effects. Looking back, though, I can imagine how liberating it would have been to have every piece of paper – from drug information and test results, to information about procedures and aftercare – available at any time. Getting that much information given to you all at once can be overwhelming at the best of times. When you are sick, feeling weak and exhausted and suffering the effects of toxic treatments, it’s hard to keep track of even basic details.
During my treatments, daily blood test results were a part of every day conversation. On my ward each room had a whiteboard where the nurse would record these results in a grid. I could see the numbers fall as the chemo did its work, and track the bounce of my hemoglobin, or the recovery of my platelets, after a transfusion. As an inpatient, I at least had some tools and supports for keeping track of my treatment.
When I left hospital, however, so much of what had been on that whiteboard faded from memory. Sure, some of it was jotted down, and the last time I was in hospital I even took a picture of the whiteboard. But all of it was scattered here and there, in one person’s notebook or another. And I couldn’t just search for it. You can’t do that on paper.
When I talk to people about my experience, and they ask about what could have been better, a lot of what I talk about has to do with information – making it easier for patients to keep track of everything they need to know. And while, in an ideal world, the health care system would provide the tools for that, and that kind of communication, not many of us live in an ideal world. Evernote, on the other hand, is here now. It’s easy to use, flexible, and available anywhere. I wish I had a tool like that when I needed it.
Keeping friends and family in the loop
Communicating with friends and family is another thing that can be a challenge when you are seriously ill. When you are sick, it’s very easy to lose touch. It can be very difficult to muster the energy or focus to write a letter, craft an email…or even pick up the phone. And when you have something like cancer, and that diagnosis is all people know, they often fear the worst.
When I was sick in 2001 we didn’t really have a solution to this problem. Sure, come Christmas, we got everyone caught up with a Christmas letter. In the meantime, however, there was this awkward silence. Many people were curious how I was doing, and wanted to offer their support, but weren’t sure what contact would be appropriate. Some, who could, visited. Others, however, sat quietly by and worried.
In 2009 I used Facebook Groups to provide updates to a group of friends and family. In the moment that worked well: Everyone could read about my progress and post comments. I could post information and respond to comments as time and energy permitted. Everyone got to follow the trials, tribulations and joys – including the birth of our second son one month before my transplant.
But Facebook, being Facebook, is not the place you want to entrust content that is important to you. Somewhere along the line, as Facebook changed – multiple times – it’s approach to groups and sharing, it was no longer possible to access all the posts and comments from that period.
Last year a new service called Postach.io appeared. Started by Input Logic, a small Canadian “digital products agency,” Postach.io is a blogging platform that lets you turn your notes in Evernote into blog posts, simply by adding a “published” tag. And, as a Postach.io premium user, I can create multiple blogs, pulled from different notebooks in Evernote, and even password protect each blog, so I can share it with just the people I choose. Now that I have Evernote and Postach.io, I have all the tools to remember everything from these challenging times, but also to share – with everyone, or with a just select few.
As I knock on wood, let me just say that I am not suggesting I want the opportunity to use these tools in the context of illness; I’ve had enough of that. I’m just saying that, if you should find yourself in that unfortunate place, I think Evernote and Postach.io are great tools for making a painful time more bearable.
Surviving by telling your story…for yourself, and others
So far, I have talked mostly about managing during the time of actively being sick, when you’re undergoing treatment, or fighting side effects and late effects, all while trying to keep track of everything that’s going on, and keep your loved ones informed. A part of the cancer patient journey that gets much less attention is the part often labelled “survivorship.” It is during this time that, from the perspective of many friends and family – and certainly from the perspective of most employers – you’re “cured.” You should be back to your old self and earning your keep.
It is because of these expectations, and the fact that they are so divergent from reality, that “survivorship” can be, in many ways, the hardest part of having cancer. And one of the hardest parts of survivorship, for me anyways, has been making sense of the world after cancer. Not only am I not quite physically the same person as I was before, and not as physically capable, but the world, and what is important to me, looks very different than before cancer. Despite reassurances, and despite any statistics for a particular cancer, the reality for many cancer patients is that the threat of a relapse or a new cancer – euphemistically, a secondary malignancy – is always lurking, haunting their thoughts and dreams of the future.
I was in remission for seven and half years. Being a relatively young guy, I think I still held on to a kind of naive invincibility; after the first few years in remission it never really occurred to me that I might find myself fighting cancer again. But when I found myself, at age thirty six, sitting in the emergency room, surrounded by a team of neurologists – my wife, five months pregnant sitting beside me – hearing words like “abnormal cells," “admitted tonight,” and “I’m very sorry,” I couldn’t ignore reality any longer. I was reminded of the lesson many who face illness learn the hard way: Never take anything, or any time you may have, for granted.
In the face of such uncertainty, I have found it helpful to engage with others – other cancer survivors, and others working in the health system to improve care for cancer patients. There are many groups and organizations that want to hear the stories of patients, that want to understand the patient perspective. I myself have been involved in the Province of Manitoba’s [In Sixty] project, participated as a patient representative at the recent [Ca-PRI Network] conference in Winnipeg, and at a consultation for a [Canadian Partnership Against Cancer] research project. I am also a member of a young adult cancer support group where I hope to provide some perspective to those younger and less experienced in the “cancer journey” than me.
Being involved with these groups has be very satisfying and rewarding. The one thing they have in common, however, is that they expect me to participate and share my story in a particular way, bounded by the limits set by the group. This is where blogging comes in. In a blog post, I can share my story, or whatever portions of it I want, in any form, at any length, targetted to any audience I desire. Rather than preparing to fit my story into a specific time slot on a given day, I could tell my story episodically, over the course of many months or years. Or maybe I want to talk about what I am experiencing right now, and report how my experience and perspective changes over time. Most of all, I can say what I want, how I want, without any concern for the imposed “tone” of a given forum. I can say “life sucks,” without being told to try to be positive. Or I can write about every little detail of an experience, without being asked to be more concise. In short, I can tell my story how it was meant to be told, how I want to tell it.
Postach.io makes sharing stories simple
So telling your story is a great idea, but isn’t blogging just another headache you don’t need when you’ve got so much else on your plate? I know I have spent far more time that I would like sorting through blogging options, trying to get templates just right, and trying to keep track of posts, and drafts of posts, in interfaces that weren’t meant for organizing content. While I am probably more interested in technology than the average cancer patient, what I really want to do is write, and have the technology fade into the background.
Which is where Postach.io comes in. If you decide to use Evernote to keep track of all your notes, bits of paper and lists related to your treatment and recovery (and I’d recommend [giving it a try] since it’s free, after all), why not also use it to jot down your thoughts and ideas. And if one of those ideas turns out to be something you want to share, just sign up to Postach.io, tag your note “published,” and you’ve got a blog post. The best part is that everything you need is in Evernote, so you get all the benefits provided by that platform – including powerful search, related notes views, and cross-platform and cross-device syncing – and the peace of mind of knowing that you will never be without any your information.
Recently, Postach.io has gone one step further, and now allows you to also publish notes from Dropbox written using HTML or [Markdown]. So if, down the line, you find yourself wanting to try a different writing tool, you can combine notes written there with the notes written in Evernote and they will all appear on your blog. As a matter of fact, if all goes well, I will be publishing this note to Dropbox from [Ulysses], a MacOS writing app that I’ve been trying and enjoying. I use it for some of my longer-form writing efforts, and may use it more for blogging. We’ll see. At least I have some choice.
Taking a load off my mind
Everyone has their own struggles after cancer and its toxic treatments. For me, other than having to completely redefine my life, my biggest challenge has been with changes to my cognitive abilities. Everything, it seems, is just harder – from remembering, to focusing and concentrating. While I have been slow to fully embrace Evernote, given I have been using it since 2008, I am finding I am increasingly depending on it as an extremely reliable place to keep everything I need to remember, or anything I might want to look at again. I scan kids’ report cards, save bank statements, jot down ideas for new projects and save pdfs of journal articles or other research I’m interested in.
A while back I scanned most of the paper from my binder of medical information and, just today, I came across a chart note my doctor had made in November 2001, which I had forgotten I had a copy of, about an unfortunate series of biopsies I had been subjected to. Knowing that I will be able to search for anything I dump into Evernote takes a huge weight off my mind.
Now that Postach.io has come along, one more aspect of my life has been simplified. Instead of having to manage my blog posts in Wordpress or some other blog platform, I can manage my blog posting right along side everything else I’m working on. And being able to move content from my blog to other notebooks in Evernote, and vice-versa, makes it much easier to keep track of ideas I’ve jotted down, separate from post drafts I’m working on, separate from completed, published posts.
Some people might be concerned about keeping so much of their lives in a service such as Evernote, and it is something to think about. I myself have gone back and forth on it. In the end, given where I am at in my life, and how desperately I yearn for simplicity, I have decided that the benefits Evernote and Postach.io provide far outweigh the risks. Your mileage may vary.
So if you’re struggling with managing your life with cancer, you can certainly use the various paper lists and diaries that are sometimes provided by clinics and in hospital. But if you are already using technology – your tablet, phone, or laptop – to do a lot of your work, I would encourage you to check out Evernote and Postach.io, as two simple, easy to use tools to simplify life with, or after, cancer.