Runaway Train

Exactly 2 weeks ago, I rang the bell (well, triangle, really) at the Ottawa Hospital's General Campus Cancer Centre to signify the end of my radiation treatment.  When I started radiation, I couldn't wait to be done.  It was a grind. Even though the treatments were quick and on-time, I felt like a burden asking people to drive me and wait around in their cars because the parking lot was almost always full.  I felt very lucky to have had so many volunteer drivers and enjoyed time with 13 different people over the course of the 15 day treatment. I was also lucky that I had minimal side effects while undergoing the treatment and wondered, maybe a little too arrogantly, if I would breeze through without any side effects (more on that later).  I was truly elated and relieved when I rang the bell and walked out, but the feeling didn't last.      

   Runaway train never going back
    Wrong way on a one-way track
    Seems like I should be getting somewhere
    Somehow I'm neither here nor there

It's hard to explain to someone who hasn't been through the mind-fuck that is a cancer diagnosis - it comes with so much anxiety and fear, so many unanswered questions and 3am thoughts that you fight not to put into words.  But, when you are in the middle of a treatment stage, be it surgery or radiation, you feel driven by a sense of direction and supported by the care team, by others who have walked in the same path, by well-meaning friends and neighbours who can understand, at least academically, what you are going through.  When a stage in treatment ends, it's just over.  And much of the support disappears.  And the expectation is that things will get back to "normal". Or, at least, it feels that way.  

It reminded me of my introduction to full-time parenting.  I say "full-time" because as you likely know, Faith was a preemie, born a full 2 months earlier than expected.  Her first 28 days were spent in the Neonatal Intensive Care Unit (NICU) where every movement, heartbeat, breath and body temperature was tracked and charted.  24 hours, around the clock.  7 days a week for 4 weeks. Nurses monitored her urine output and bowel habits, blood oxygen levels, and a whole bunch of other things that felt both over-whelming and reassuring at the same time.  At the end of her stay, when she was slowly putting on weight, and relatively healthy, she was discharged and it was the most wonderful and also the scariest day I ever experienced.  Weighing only 3.5 pounds when she came home, too small for a car seat, the nurses just handed her to us in a borrowed car-bed and wished us well.  Going from the "safe" and monitored environment of a NICU to our home, felt like we'd jumped out of an airplane and on the way down were checking our parachutes...

Ok so maybe that's a little over-dramatic, but you probably get what I mean.  Leaving the NICU was a bit like walking out of the Cancer Centre after the end of radiation and I was struck with a sense of "now what"?  Again, I was given best wishes to go live my life by the nurses and radiation techs but I wondered, how do I go back to my old life, pick up the pieces and the parts that have been on-hold?  How do I stop waiting for the next part, scan, test, milestone? So many people were excited for me to be done, heck, I was excited for me to be done radiation.  But after a few days, it felt like I was still waiting for something, though I wasn't sure what. I felt like people wondered why I wasn't back at work already, why I wasn't back to "myself", now that the cancer was out and the radiation was behind me.

    Can you help me remember how to smile?
    Make it somehow all seem worthwhile
    How on earth did I get so jaded?
    Life's mysteries seem so faded

   I can go where no one else can go
    I know what no one else knows
    Here I am, just drowning in the rain
    With a ticket for a runaway train

I didn't have to wait long for the side effects of radiation to appear as the red skin first appeared before day 11 of my treatment.  At its worst, the radiation burns were a cross between a bad sunburn and a prickly heat rash.  They made hot showers impossible (and I really hate cold dips!) and wearing a bra very uncomfortable.  I limited my time in a bra to the gym and felt like a hippie at every other time!  Putting cream on my skin became a bit of a part-time job but it seemed to help as I didn't get any blisters or other complications to my skin from the radiation.  The post-radiation fatigue has also hit and with it, I've been taking/needing a mid afternoon nap.  If you know me well, you know that I DON'T nap, both out of fear of impacting my sacred night sleep, and also because I usually can't shut my brain down during the day.  But multiple times over the past 2 weeks, I have crashed between 3 and 5pm and then headed to bed by 10pm, as per usual.  I'll meet with the radiation oncologist in March and he will be the one to follow me with scans over the next 5 years.  The first mammogram will be 6 months after the end of radiation and then every year for the foreseeable future.  

Speaking of foreseeable future, for the next 5 years, I will be taking medications as directed by my medical oncologist, starting with Tamoxifen.  I've delayed starting it to get over the side effects from radiation and will start in the next few days.  Tamoxifen is a drug that binds to estrogen in the body so that it can't be used to feed breast tumours.  It doesn't reduce the estrogen in the body (being in menopause and now off HRT has already done that) but will help make it unusable.  The side effects could be nothing (here's hoping) to some pretty extreme ones but the most likely ones are eye problems, hot flashes, severe joint pain and fatigue. 

Since the day of my diagnosis, I'd been looking forward to this time, when I could put cancer behind me, so what am I waiting for?  Its hard to say but I'm realizing that I still have a lot of work to do to get there.  A number of years ago the federal government had a campaign related to mental wellness in the workplace and produce pins with different logos on them, to let people know how they were feeling without saying a word.  I didn't feel, at the time, like I needed anything like that but now I see the value in having a button that says "not myself today".  I may look the same on the outside as I did a year ago, before any of this started, but I do not feel like myself.  Or at least not how I used to feel.  

I know that cancer is not going to define the rest of my life, but it has impacted it and changed me.  And Faith's life as well.  She's still in the waiting mode to have radiation and will start a preparation diet on Monday to reduce the level of iodine in her body and make the radiation more effective at targetting thyroid cancer cells.  I am still struck by the unfairness of it all - that she has to face this life-altering disease at her age.  So while her teacher friends are enjoying their first March break on paid holiday, she will be back in Ottawa, with 5 medical appointments in 7 days to prep, blast and record the impacts on her body of the radiation.  She has to do all of this alone to limit the exposure of radiation by others.  My heart aches for the loneliness and isolation she is sure to feel, at her being robbed of normality, even as I am grateful that this relatively simple treatment option is available to her. 

    And everything seems cut and dry
    Day and night
    Earth and sky
   Somehow I just don't believe it  (Lyrics from Runaway Train, Soul Asylum)

It's taken me a long time to write this post - much longer than usual.  And I was just struck by something as I was doing my final proof-read...that maybe what I am waiting for in order to really start feeling like myself and that I can move on is to end this process with Faith.  We have been going through the steps in sequence, almost at the same time.  For those of you familiar with fiscal years, I have started to refer to this current fiscal year as the cancer year - Q1 (April -June 2004) was Faith's diagnosis, Q2 (July - Sept 2024) was my diagnosis, Q3 (Oct- Dec 2024) was both of our surgeries and recoveries), and Q4 is radiation.  Maybe once she has completed her radiation, I will feel like celebrating. The fiscal year ends on March 31 2025, with probably the most significant date being about 2 weeks before, St Paddy's Day.  This day is significant not because of my Irish roots but because it is the day of Faith's PET scan, which will hopefully bring the kind of news that we have been hoping to hear since the beginning of this nightmare. 

May the luck of all the Irish, in my family and all of yours, be with her on that day.