Survivors Guilt: The Precipice of Self Sabotage

Essentially, the survival rate of Acute Promyelotic Leukemia, assuming you make it through diagnosis and Induction (the first phase of treatment), is somewhere between 80-90% chance of full recovery.  While I have not been able to find a conclusive study that specifies the rate of early death prior to diagnosis, I was able to find one study by the American Society of Hematology’s website Blood Journal,  that predicts ‘an early death rate of ∼ 5%-10% within the first month of starting ATRA, mainly from intracranial bleeding’.

When I received the conclusive diagnosis that indeed, what I was suffering from was Acute Promyelotic Leukemia, I was told, the same.  Almost verbatim.  Over the next 4 months of treatment, I was told by a number of medical professionals that, ‘Of all the leukemias to have, this is the one you want to have!’.  I think the intention of such a comment was to make me feel comforted.  However, the mind of a newly diagnosed leukemia patient, fighting for their life is a complex one.  Initially, I didn’t really have any thoughts specific to this information.  I just kind of figured it was what it was.  I couldn’t give my leukemia back and I didn’t get to exchange it for another one anyway soooo, there wasn’t a ton of value in such a statement to me.  However, over the weeks and then months, it crept into my thoughts fairly regularly and eventually I noticed I felt guilty.

I can remember sitting in Outpatient Day Services receiving treatment during Consolidation, the second phase of treatment, and speaking to a man who had another blood cancer (not APL).  He told me his story, like so many did, about his fight.  How he refused to accept the standard protocol offered by his oncologist.  Instead, he cut toxins out of his life and started juicing.  He also started using medical marijuana which he swore up and down is what helped him achieve and stay in remission for 6 months.  His wife didn’t like him using medical marijuana though and pressured him to stop using it.  Within weeks of stopping, he relapsed and was forced to agree to the recommended protocol.  If I were to guess, he was likely about 50 years old and he bawled without control.  It was one of the saddest moments of all the time I’ve spent in the hospital.  It was also an epiphany for me.  I felt guilty.

I recalled all the times I had been told how lucky I was to have APL, and here I was sitting across from this man eating my Tim Horton’s soup, which tasted great, drinking my tea knowing that within the next couple weeks, he likely wouldn’t be able to eat anything.  He would likely have nausea and his food would taste bad.  Maybe he would even have mucositis.  He would probably lose his hair and who knows how long that would go on for.  What I did know was, although I had experienced nausea, I didn’t anymore and although I had experienced mucositis, I didn’t anymore and I could taste everything properly.  My hair had fallen out but would grow back soon, and I would likely never experience those things again.  How lucky was I?

Today was a challenging day.  We increased my dose of the maintenance drugs this week.  My stomach feels a little unsettled.  I’ve been having chest pains for 5 days and strange headaches again.  I had to stop walking outside in the mornings because it’s too hot and I’ve been experiencing tightness in my chest.  I did manage to walk around the local mall for an hour though and that is better than nothing.  Better than many others in my position could manage.  Am I lucky?  Yes, I am.  I am alive.  Does my ‘luck’ discount my experience?  No, it does not.  Do I feel sorry for myself sometimes?  Yes, I do and that’s ok.  The fact of the matter is, I just about died…twice.  I almost didn’t make it to diagnosis.  Then, I just about became that ~ 5-10% statistic when my heart rate dropped dangerously low while receiving Idarubicin.  Yet, there I was sitting in the hospital being pumped with Arsenic Trioxide to combat my disease and I felt guilty that the man sitting across from me was about to go through another terrible battle.

At the end of the day, everyone’s personal experience is their own.  No one is the same, diseases are different, protocols are different, starting health is different and mind frame is different and associating luck with any disease is unfair.  While we can not change the words uttered by others, we can change how receive them.  Having compassion is a beautiful thing but it doesn’t have to come at a cost to you, yourself.

Until next time, you’re doing great.  You’ve got this!

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