I’ve met so many people over the last 3 years, since my diagnosis of Acute Promyelocytic Leukemia. So many people with their own stories – whether they be as patients, survivors, caregivers, medical professionals – some of which are patients also. I’ve come to realize that everyone has their own way of celebrating their wins and acknowledging their challenges. It seems some like to remember and even celebrate their diagnosis anniversary, remission anniversary, the date they finished chemo and the date they were declared ‘cured’. While I must admit I was disappointed I didn’t get to ring a bell the day of my last IV treatment, the fact of the matter is, just because I was finished with IV treatment and in remission didn’t mean I was done. Not even by a long shot.
I’ve spent a lot of time thinking about how others treat their journey and how I feel most comfortable celebrating or acknowledging what I’ve been though. I don’t think I’ll ever forget the day I was diagnosed. It was pretty traumatic. If you’re interested, I’ve explained that horrific day in my last article, How Complacency Almost Cost Me My Life, and in my written story which can be found in Survivor Stories. I’ve passed that anniversary already and I must say, it wasn’t a day I felt like celebrating. In, fact, it was mostly just painful and caused significant anxiety. Nope, I don’t think I’ll be celebrating that particular day any year soon. The silver lining is, it reenergized me in terms of my advocacy interests and reminded me how strong and resilient I really am. It gave me the opportunity to relive that experience and process feelings that I didn’t have a chance to feel at the time, while I was fighting for my life. In reflection, I found it fascinating that my brain simply shut off most of my emotions to focus on what needed to be done – survive.
I learned that I was in full remission in March 5, 2018. Of all the anniversaries I’ve learned that people celebrate, this is the one that is most meaningful to me (so far). Getting that news meant, I won the battle and could take a deep breath. But it didn’t mean I had won the war.
What does remission really mean?
The medical definition of remission varies a little bit depending on who you ask but it can basically be summed up to this; The lessening or disappearance of the signs and symptoms of cancer. In partial remission, signs and symptoms have lessened. In complete remission, all signs and symptoms of cancer have disappeared. However, it is very important to note that just because all signs and symptoms are gone, does not mean it is gone! This is a very common misconception with cancer. I’ve been asked many times over why I still need to take drugs, or even why I hadn’t gone back to work yet. These along with example after example, confirms that there is a significant lack of understanding out there. I myself knew nothing about cancer, cancer treatment or even some of the basic language that describes an individuals medical status before my ticket just about got punched. I did everything I could to avoid sickness. It made me uncomfortable…I didn’t know what to say…what to do…and so I avoided it like the plague. Here’s the thing, Canadian Cancer Society predicts that 1 in 2 Canadians will be diagnosed with cancer during their lifetime so we better get comfortable with it, and quick! Like it or not, ignore it or don’t, with rates like that you WILL encounter this disease so you might as well be prepared.
What did achieving remission technically mean for me?
I started treatment in early December 2017. After very intensive treatment as an inpatient, due to my very poor condition at diagnosis, it took us about 6 weeks to achieve cellular remission. That means that the cancer was > 99% undetectable at the time of my second bone marrow biopsy in January 2018. Here’s the kicker, 1% can represent about 1 billion cancer cells. The second test conducted with the sample from a bone marrow biopsy is at the molecular level. Meaning, the state of the genetic markers that caused someones body to start producing cancer cells in the first place. Unfortunately, during the second biopsy, they weren’t able to get a conclusive result of the molecular component. On March 5, 2018, after my second round of treatment, and my third bone marrow biopsy, results confirmed cellular remission AND molecular remission.
It meant that I was winning BUT there was still so much work to be done. It meant, I could sigh that little bit of relief and then get ready for another 30 days of IV treatment with Arsenic Trioxide and ATRA, that would continue to pummel my body. It meant that after I made it through that last 30 days of IV treatment, I would get a small reprieve – just long enough to get a glimpse of what life would be like when I was actually finished treatment. And that four weeks later, we would start poisoning my body again for maintenance therapy for a continuous two years. You see, I was required to take a mix of medications for two years that would continue to kill my blood cells weekly and force the genetic markers I mentioned to stay off. But I was alive and there was a significantly greater expectation that I would stay that way for a while.
What my 1 year remissiversary meant to me was, I battled like Gerrard Butler in 300. I have persevered like Michael in all of the Halloween movies…and even looked like him in the early days but have come out the other side not quite as hot as Jamie Lee Curtis in True Lies but so much better than Michael in Halloween, so I’ll take it. It marks a period of immense triumph and I could celebrate a little bit. I still celebrate the fact that I made it through the most gruelling years of my life and have started a new one fresh and healthier than the last. I celebrate knowing that my chances of relapse have dropped to something amazing like 2%. I can celebrate who I have become as a person since starting this journey and who my family is together – which is so much stronger and loving than it used to be. I can take away the lessons I’ve learned and refocus my energy on being a better person for me, my family and my communities – all of them. I can acknowledge that life is no longer defined by the expectations of others, the expectations of society or the unreal expectations I’ve always had of myself and I can live beyond the box I worked so hard to maintain for ‘self-preservation’. I can proudly say without care of judgement that I am strong, I am resilient, I take nothing for granted which allows me to live a grateful life. I am present for myself and my family. I am still anxious but I don’t have heart palpitations anymore unless an Oncologist appointment is coming up. That is progress and I no longer expect myself to be perfect – so it’s ok if I still feel some anxiety.
I can be hopeful that I am getting my life back…or better yet, am on track to living one better than I was before I got sick. I got to marry the love of my life (last summer), one step closer to watching my kids graduate from university. I am a new me, and I like her better. While I could have let this experience tear me down, make me bitter towards the world for all it’s injustice, or really for no reason at all, I decide every day to make the best of my situation and be confident in my continuous overall improvement. That is not to say that there aren’t moments or days of weakness because I assure you – and I’m sure my family would attest to this – not every day is great, good or even fair. Some of them suck…a lot. But again, we all have moments and days, and maybe we can all just be a little kinder to ourselves too.
I choose to be positive, optimistic, progressive and to be more kind to myself and others around me because I am acutely aware that life is too short to be anything less than everything you want it to be.
How I live my life is my choice. I choose to live my best life.
Until next time, keep up the good fight. You’ve got this!
4 thoughts on “What Does Remission Really Mean (To Me)?”
Love it, keep the great words coming!
Naguib S. Kerba CFP CFDS Fellow of FPSCC
Vice-President Bellwether Investment Management
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We celebrate along side you.
Sending lots of love and kisses.
A beautiful philosophy from a cancer patient. Thank you for your really helpful article.
Gene Castle, Washington County, PA, 82 years of age, dealing with multiple myeloma and cardiac amyloidosis contracted from exposure to Agent Orange in Vietnam. I am now 100% disabled as a result. My oncologist just informed me that I am now in remission and, after almost 2 years of weekly chemo treatments, am now receiving a maintenance dose of chemo every 4 weeks. My diseases are not curable, but are treatable. It could be worse. I count my blessings. The people treating me are saints and angels.
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Thank you for your kind words, Gene. That’s quite a lot to manage. Congratulations on achieving remission!