Happy New Fear!

Ah, January 2nd!  This is normally the time of year when relaxation is at the top of my agenda.  The buzz and bustle of holiday commitments has subsided, leaving in their wake plenty of time for rejuvenation, reflection and rest.  A New Year promises hope, love and joy, but this year, for me, it rings in another emotion loud and clear, fear.  I’ve wanted to tackle this aspect of post-cancer life in the past, but never knew quite how or when to approach it.  I’ve been open about my experience with breast cancer from the get-go; in fact, that was my objective, to narrate my story in a raw and unedited format.  But I admittedly held back sharing this aspect until now, perhaps out of humility, or more likely, out of fear.  I feared fear.  But when my oncologist ordered a follow-up CT scan for December 31st, I took it as a sign that it was time to delve in to this unpopular yet prevalent phenomenon that we cancer patients refer to as the dreaded, scanxiety.

Before I tell you about the scan, I should fill you in on what has happened since September.  At my last post, I was about to have a bilingual salpingo oophorectomy (ovary and fallopian tube removal) to cut my production of estrogen and send me into forced menopause.  The surgery was laparoscopic and was really quite easy.  Oddly, I was more nervous for this than I had been for my mastectomy, but I think it was because this was (1) my choice and (2) taking out “inside” vs. “outside” women’s parts. In actuality, the surgery was a breeze.  Recovery went really well, about 5 days of moderate pain, 10 days of very uncomfortable moving about and a total of 6 weeks before I was fully mobile and able to resume normal activities.  As with my mastectomy, my biggest challenge was keeping my toddler from head-butting my torso.  

The site healed well, and I now have a series of 3 connect-the-dot scars (the fourth concealed in my belly-button) to add to my growing collection of torso scars.  I was catapulted into menopause immediately, before I even left the hospital, as my estrogen levels plummeted without warning.  If you’ve ever given birth you are familiar with the Day 5-7 postpartum hormone crash, which I always referred to as “crazy day”.  It was the day where you had fits of inconsolable crying immediately followed by outcries of joy, then fits of anger.  A real treat for our partners.  Well post-oophorectomy me had a heightened (!) version of this, but thankfully for my partner, he was on the other side of town; I was in recovery and under the care of a nurse whom I’m sure is happy he’ll never see me again.  After a few uncomfortable exchanges, I was actually transferred to a female nurse whom he briefed in French to “watch out for as I was emotional”.  Emotional me replied to him (in French) that yes, I’m very emotional, I can no longer have children.  His jaw dropped and I was treated very nicely after that by his replacement.  I was angry at myself after saying that.  Then I cried, and was overjoyed.

Precisely twelve hours after my surgery I received a call from my disability insurance, wanting to know if I was ready to start my return-to-work program.  These folks don’t waste any time!  As I was drugged up on pain medication, I waited til week’s end to return the call, and finally sorted out that I would start a 4-week cognitive hardening program in October.  The program was fine and I believe did some good, placing me in a mock office environment and having me do light duties on a computer.  Kind of like dusting off an old bicycle and putting a bit of air in the tires.  What the program did not (nor could not) do was assess the state of the bike, if it needed any repairs, and if it was safe to ride.  Sure, it looked fine in the shop, but how would it fare on the road?

I climbed back on the bike on December 1st.  I’ve worked my way up from 8 hours the first week to about double that this week and the expectation is that I will be doing full-time hours by the end of January.  I’m petering out at about the 5-hour mark, and that is with brief, hourly breaks.  I’m taking it one day at a time.  There is a lot of retraining of the brain to be done, a lot of sorting out how to function in a work environment with my new set of post-treatment challenges, and of course the careful management of my unrelenting fatigue which has severely affected my quality of life.  Before I returned to work I started having some new symptoms, some of which may be attributed to stress, change in routine, menopause, or the fact that I am off Tamoxifen and now on an aromatase inhibitor, Arimidex.  They could also be late-effects of the chemo and radiation.  In any case, my oncologist thought they warranted inquiry, and so that brings us to yesterday’s CT scan.

This was not my first follow-up scan, nor my most critical.  It is, however, the one which is weighing most heavily on my heart.  I suppose it was bound to happen - one can only be incessantly optimistic for so long - but I am quite peeved that my brain chose this particular time to pull an all-out freakfest.  I mean come on, it’s the New Year!

Let me first quash your worries - there is absolutely nothing of significance to report.  No serious or tell-tale symptoms of recurrence, no dramatic changes in my health.  I have simply noticed some new symptoms that I’ve never before experienced, and as it is the first time they have surfaced, my team is being prudent and investigating thoroughly to rule things out.  Things being metastases.  Aside from annual mammography, there is no set regimen for follow-up post-treatment.  No regular MRIs or CT scans.  No fancy bloodwork.  You are followed up closely by your cancer team, but the onus is on you to report any unusual symptoms.  So what are the possible symptoms of recurrence you ask?  It depends on which part of the body you are talking about. Breast cancer typically metastasizes to one of four places:  lungs, liver, bones or brain.  That’s a lot of ground to cover, as each carries with it a whole bevy of symptoms to self-monitor.  It is indeed exhausting worrying if every headache, bone ache, tummy ache or new cough is a symptom of recurrence, but it is more exhausting trying not to worry about these things, and convincing yourself that they are all normal changes everyone experiences.  There is a fine line to draw between being the overly-burdensome patient and the one who doesn’t wish to be a burden at all and gets left in the dust.

So where does that leave me?  Well as any person who has lived through cancer treatment knows, sitting here in limbo between waiting for the scan and awaiting the results is well, pure hell.  Even if you think it’s nothing, even if you know worrying doesn’t help at all, you simply can do nothing else.  All the time.  For, unlike the fear that came at initial diagnosis, this is not the fear of the unknown now, it is the fear of the known.  You know exactly what comes after a diagnosis.  The effects of chemo and radiation, though physically gone from your appearance, are forever etched in your soul.  

So I found myself the morning of New Year’s Eve en route to my CT scan and rife with scanxiety.  I was drifting dangerously close to its black hole, waiting to safely cruise by or be sucked into its vastness.  This was no fun, and certainly no way to ring in the New Year.  But then I got to thinking...

The only way I have found to ease my anxiety is to immerse myself in my life without cancer.  To do the things I love that make me who I am and remind me of who I want to be.  So as I wound myself through the hospital corridors towards the radiology department, I came up with the idea to photo-document my day.  This way, I could combine two of my passions, photography and writing, and share them with my you via my blog, hence bringing in my third passion, creating community.  I hope you enjoy this little window into my New Year’s Eve as much as I enjoyed making it.  Cheers, love, health and sanity to you all.  And remember, it is perfectly ok to have a bad day and to let it show.  We should all be remembered by who we were, not by who we wanted everyone to believe we were.

En route to radiology

Horrid pre-abdominal CT cocktail - I can't Barium it!

All I could think was, mmm...donuts!