What doesn’t kill you…

01Jun14

Four years of screening later…  I am still here.  My mom is not.

I’m stumbling back to this blog to write because I don’t really know where else to go.  I first started this blog when I had just found out my mother had been diagnosed with breast cancer, and it was hereditary.  Not having many people to confide in personally, I did the second best thing and confided anonymously to the world.  But while December 2009 may look like a very productive blogging period, it was a highly unproductive period of my life.  I still feel a bit guilty about the contract work I put secondary to my obsession on BRCA2 germline mutations and PubMed.  However, I don’t feel guilty for not writing here in the meantime.  I spent that time getting a new job, gaining permanent residence, taking up a running hobby, and spending time with my mom.

I was never in denial about my risk factors these last years but I did find a way to put my anxiety on it aside.  As my last posts indicated, I got enrolled in the local hereditary breast cancer screening program.  I was eligible for MRI testing after all, and have had MRI and mammogram screens about once a year.  I have managed to never get worked up over waiting for results.  I also have found the MRI—which many fret about—to be a good test of patience, and somewhat fascinating.  I know the machine well enough now to get excited when it really starts knocking and clanging as it is strangely rhythmic; and it also indicates I am almost free to move again.

Actually, I probably became too complacent with screening.  At every appointment, the nurse and doctors continued to gently ask if I was ready for testing yet. I stuck by the position that I didn’t want to jeopardize my immigration application in any way.  My decision was respected but it was also frequently mentioned in passing that there was no known case of such genetic discrimination in Canada.  My medical exam for immigration was earlier this year and, sure enough, there was no point where genetic risk factors for cancer could have even come up.  Good news though: I do now know that I don’t have syphilis or tuberculosis.

I got a rude awakening in my last screening appointment earlier this month.  It was for a mammogram and I was proud of myself for managing its rescheduling (and not letting it be one of those phone calls that I “forget” about).  But the day I showed up, the doctor apologized for the clinic messing up the appointment: “You had your mammogram six months ago, right?  So we should have scheduled you for an MRI.  I don’t know why they put you down for another mammogram.”  I sat dumbfounded.  I know the screening schedule is supposed to be alternating between the two tests every six months.  But I hadn’t been keeping track of my appointments at all.  I had just been following the reminder cards without a second thought.  So much for advocating for my health and taking charge.  I went home early that day promising to myself to be more engaged.

However, I did call to setup my genetic testing appointment shortly after I got my permanent resident application approved a couple months ago.  This also happened right around the time my mom told me that her cancer had stopped responding to treatment.   Suddenly I felt rushed, as I remembered that my mom had also been waiting patiently for me to get tested.  And with her news, I realized she might not get that chance.  I asked for the nearest possible appointment to do testing.  I asked if maybe I could skip the counselling since I had technically done it before.  I got a date three months out, and gave up on trying to move it forward.

The truth is, I was terribly torn up about disclosing the results to my mother.  She told me a couple years ago that she was initially upset when I didn’t immediately get tested back in early 2010, but she felt better about it as she knew I was still being proactive.  I understood why she was interest in knowing the results.  But I also knew there was only one answer she could possible want to hear: that I am negative.  Each year that I put off testing and her cancer progressed, I felt more conflicted.  Most recently, I had been thinking that I would tell her I was negative no matter what the results.

But time ran out.  Mom passed away last weekend.

I write that so matter-of-factly, but tears are still streaming down my face.  I know they are going to continue for a while.  Even though she did her best to find acceptance at the end, even though everyone worked so hard to give her the dignity she deserved, even though we had the chance to say our goodbyes… it just doesn’t lessen the grief.

And sometimes it doesn’t just rain, it pours.  Next week is my third funeral this year.  It’s hard growing up, and I know we all have to face these pains.   But sometimes, BRCA just makes it harder.

Curse it though, I am going through with the testing this coming month.   It’s never going to get easier anyways.

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3 Responses to “What doesn’t kill you…”

  1. 1 Marie

    I am so sorry to hear about your Mom’s passing. It’s been two years since my mother died and it still hurts every day. I wish I had some words which could ease the pain for you at this sad and lonely time, but I will have to fall back on the cliche, that time will ease some of the pain for you – but never erase it entirely. This post on my blog has helped me feel a little less alone in my grief and I offer it to you today in the hopes that it may help you too.

    http://journeyingbeyondbreastcancer.com/2012/01/31/the-motherless-daughters-club/

    Take care x

    • Marie, thanks for your comforting words and the link. Was exactly what I needed this last weekend.

  2. 3 Rob

    Just wanted to say thank you for writing this blog. I am a BRCA2 positive male with an infant daughter. I will not know whether she has the gene until she is 18 and only if she decides to get tested. It is helpful to me reading your blog and your thoughts as I am sure my daughter will have some of these thoughts when she grows up. Hopefully I am around and hopefully science/medicine makes good progress by then.


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