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An Unexpected Journey



Preamble ramble

This is a big post for me, which is why it took so long to materialize.  I can’t recall if I’ve ever commented on my writing process, but I typically pour out my posts in one fell swoop as soon as a theme enters my head.  It has never taken a great deal of effort or time to record my thoughts, and I look forward to the moment inspiration strikes, always late-evening, well after the sun and our kids have gone to bed. 

I’d intended to do a post-rads update in February, sort of a “and that’s a wrap” summary of my active treatment phases.  I eagerly awaited the moment when my mind would open up and release its inner goings on.  Much to my dismay, February came and went and inspiration was nowhere in sight.  I felt a multitude of words pressing on my brain, itching to escape, but a cloud as thick as mud kept pushing them back in.  I knew something was amiss as my passion for writing had never before felt like work.  This is when I recognized that one of two things was happening: either my mind was playing tricks on me, or my mind was playing tricks on me.  I decided it was the latter, and that I had entered a new level of cognitive impairment which I have dubbed, “Chemo Brain II:  Back to get ya!”

I decided not to let it get me down.  I can’t change it so why fight it?  Accepting that you are not your former self can be reassuring once you realize that it is only a temporary state.  I put it in my (new) mind to keep sight of this jewel of wisdom and to take it out and look at it whenever I began to feel disconnected.  With this newfound hope I decided I should simply write now and make sense of it later, and return to regularly scheduled programming once Ellen’s brain returns.  And so, my friends, here goes…

Cancerversary

Hard to believe that one year ago today I came home with a breast cancer diagnosis, held my daughter (then two weeks) in my arms, and shed many tears over all the things we would not share.  Even harder to believe how mistaken I was and how differently the year would play out for both of us.  It is amazing having her as my personal timekeeper, her birth month being my cancerversary, as it reminds me that I have changed and grown perhaps as much as she in the past year.  She surprised me with her resilience, independence and ability to thrive under less-than-perfect conditions, and I, awestruck, followed in her footsteps.
My rock
The end of active treatment in January signalled a turning point in my journey, though not the one I had anticipated.  My final dose of radiation brought with it a heightened promise of return to normalcy.  I would no longer have a constant flurry of medical appointments, and could look forward to spending more time with my family.  I planned to reacquaint myself with my old hobbies of writing and photography, and to join an exercise class of some sort.  Logic dictated that I should feel a sense of calm, relief and contentment at having completed treatment.  Although I did experience an initial “hoorah” (I got to ring an end of rads bell), it was soon followed with the “now what?” factor.  I’d heard about this and honestly didn’t understand it until I was right smack in the middle of it, but I actually missed treatment once it was over.  At the time I found it difficult to explain to others why I wasn’t overjoyed after radiation, but I will give it a go here.  When you are having chemo there is structure.  You know what is coming.  You have some bad days, some recovery days, and a cycle of change and then it starts again.  You are kicking cancer to the curb.  Same goes for surgery, be gone, foul tumour!  And radiation?  Daily zap, come and get it!  And then…crickets.  Faced with survivorship, I didn’t know where to go from here and there didn’t seem to be any plan.  I can tell you that this is a planner’s worst nightmare! 

The absence of structure only further compounded my cognitive impairment, and it became difficult to concentrate on daily tasks.  I decided help was needed, so I reached out to a social worker at the Cancer Centre who helped immensely in identifying my concerns, setting goals and establishing a plan to reach them.  I can’t go on enough about how helpful she has been, not only for her insight and resourcefulness, but simply for being the “clear mind” behind my voice.  If you have access to a psycho-social oncology program, make use of it.  There are so many ways in which they can make this ride easier.

Now that I’ve shared my latest conundrum, I’ll move on to bigger and better things.  The post-treatment wrap up.

Side Effects Post-Radiation

Physical
As predicted, two weeks post end of rads my skin was at its darkest, and then slowly started to fade and return to its previous tone.  I was fortunate that it healed so quickly and completely.  Radiation in the end was as expected, a walk in the park compared to chemo.  I only wish I had opted to use coconut oil sooner instead of sticking with the prescribed regimen of Glaxal Base lotion.  Coconut oil brought instant and chemical-free moisture to the site and was so much more effective for me.  Plus, it didn’t hurt to smell like a tropical island!  The range of motion in my affected arm was back to normal thanks to physiotherapy and staying active, and I began toting Imogen around the house in small bursts.  My hair which had been gradually sprouting began to grow in nicely, albeit, wavy, and I soon found myself at my first hair cut since the big shave off of May 2012.  Nelson transformed it in to a sleek croppy do, making me instantly feel all Anne Hathaway / Nathalie Portman- esque.  I like it so much that I may just keep it this length for a while.  

5 months post end of chemo
Energy levels had been on the decline, and by one month post rads dipped to an all-time low then plateaued.  By mid-February fatigue was in full force although my days were injected with outbursts of energy followed by sudden, staggering dips.  I call upon the image of a balloon being inflated using one of those zippity-quick air pumps, then every few pumps it breaks free, flies around the room at breakneck speed, covering a lot of ground in very little time, then collapses in a heap on the ground.  This pattern has not wavered, and has become my, yes wait for it... new normal. 

Another side effect that lasted for about one month post rads was sudden insomnia.  I’ve never had trouble sleeping, even throughout chemo, but this was full-blown insomnia and it wasn’t going anywhere!  It let up soon after I joined a Hooping class, no joke!  Exercise is our friend.  Now I'm getting lots of sleep.
 
Initially I found these physical ups and downs hard to manage, but it is becoming easier - the trick is to have to-do lists on hand for when those bursts of brightness occur, then to be very efficient at getting things done before you fizzle.  And of course you need down time, often at a moment's notice.  This can be tricky to swing when the kids are awake, but let's just say we have significantly expanded our childrens' DVD collection.  Thank you Letter Factory and Franklin!  I would feel like a bad parent were it not for having hand-sculpted the coolest little toboggan slide in our back yard this week.  It really does rock, especially with those sledoos (plastic seats with a handle).  Relatedly, did you know that Crazy Carpets are now called Wacky Carpets?  Crazy!  I mean...wacky! 


Train of thought?  Please return to the station.  You're getting away from me...


Cognitive
Not to belabour this point, but I do feel it is important to share that I often feel as though I am not myself, that chemo has affected my mind on some level.  For the past several months my memory has been on the decline, with short-term memory being hit the hardest.  I also regularly forget common, every day words and end up referring to "the room with the fridge" or "those things you wear on your hands".  It takes a great deal of effort and focus to get tasks done, and I sometimes wonder if I am capable of making decisions, exercising sound judgement, and being in control.  The decision-making impairment I found particularly unfortunate when I was trying to decide whether or not to start endocrine (anti-estrogen) therapy.  . 

 

Tamoxifen or not Tamoxifen?
That was the question.  From the get-go I was told my cancer treatment would involve four phases:  chemo, mastectomy, radiation and endocrine therapy.  I dealt with the first three in turn and kind of pushed the last one to the back of my mind as I already knew how I felt about taking medication.  I don’t take anything for headaches as I tend to relieve them by either eating or drinking.  I delivered my second and third child without an epidural (after taking an epidural with my first and seeing how it worked against us), and am a proponent of alternative or complimentary therapies (chiropractic, naturopathic) in combination with proper nutrition and exercise.   So asking me to start taking a pill a day, every day for 5 years is asking a lot, particularly one that is considered carcinogenic.  Yes, the pill used to reduce breast cancer recurrence, with time, is known to double or quadruple one's risk of endometrial cancer, which is why it is not prescribed for greater than 5 years.  This did not sit well with me.


The other side effects of Tamoxifen (increased memory impairment, hot flashes, bone and muscle pain, to name a few), are ones I can live with because well, Tamoxifen saves lives.  So in the end, I finally bit the bullet and decided to start on the drug in February.  It's been about 7 weeks and I have noticed a further decline in memory, likely due to the double whammy effect of chemo-induced memory loss. I had a lot of bone pain initially, especially upon waking, almost as if my vertebrae were fused together.  This dissipated once I got up and moved around.  I still have a great deal of muscle stiffness every morning which puts me behind by about an hour (picture an 80-year-old Ellen slowly climbing out of bed).  I've been playing around with time of day and taking it in the morning seems to fare better than bedtime for me.  Aside from that, I am a veritable sauna from sunrise to sunset as Tamoxifen is great for hot flashes (also a lingering chemo side effect)!  Consequently, I have mastered the layered look.  All in all I’d say side effects are (so far) minimal, and I try not to over think / over dramatize the whole endometrial cancer thing.    

Now what? 
I asked my oncologist that very question and she advised that my visits will be every three months.  I’m to report any unusual pain, worsening headaches, pretty much anything that might hint at being anything, and aside from that, I will have annual mammograms much like everyone else.  I was surprised, no, shocked to hear that there are no regular MRIs done – I would have thought since I was node-positive that they would be monitoring for metastasis.  But I guess the assumption here is that chemo and surgery and radiation worked, so there is no metastasis.  I will have an MRI in April to check a spot that was found in my right breast back in October.  It was too small to confirm back then and everyone thinks it is nothing.

I’ve taken to creating my own action plan, and I’m not holding back any stops.  I am in the middle of a naturopathic assessment, undergoing regular chiropractic care and had the absolutely most amazing massage at Haley Rehab by a RMT trained in giving massage to cancer patients post lymph node removal.  I was crushed to learn I should no longer go for regular massages (it could cause a flare up of lymphedema) but thrilled to have found this RMT!

The last step of my recovery plan involves just that – recovery.  Reflecting on my treatment year, I realized that I had gone full force and not missed a beat, and caring for my young family of three I didn’t pay much attention to my own recovery.  With this in mind, and with side effects in full force, I made the decision to put my health first and not return to work immediately following maternity leave.  When I do return to work I will be refreshed, energetic, focused and ready to dive in!  Plus I’ll be rockin another kick’ass haircut, no doubt! (think Charlize Theron @ the Oscars…a girl can dream!)
How YOU doin?
Blessings Report
Now then, I could fill an entire post with my 2013 blessings to date, but here are some that made my heart melt:
 
Imogen turned 1!   

She is my angel and I can’t believe she still sleeps 11.5 hrs/night 

My cancer pen pals 
You know who you are.  You are the coolest and funniest people I know! 

Head coverings, be gone!   
Can’t tell you how great it feels to go bare-headed 

End of active treatment 
...no really, I am truly happy about this.  Seriously. 

12 months of maternity leave
We Canadians really have nothing at all to grumble about.   

Post-treatment recovery time 
What a blessing.  I will cherish each day I’m given. 

Babies, babies, everywhere babies 
So many of my dear friends welcoming wee ones into the world this year. 

Chiropractors and Naturopaths and Physiotherapists and Massage Therapists and Social Workers, oh my!

The Eating Right Program by Dr. Joel Villeneuve 
On a waiting list for this amazing cooking program…fingers crossed, my husband may actually get some time out of the kitchen. 

Cottage Dreams Program 
We have been accepted and are waiting to be matched with a free cottage rental! 

I Updated my Blog! 
I wonder if anyone will be able to understand it? 

Spring has sprung! - oops, how did that get on the list? (we had snow again today)


Comments

  1. Wonderful writing again Ellen, and glad to see you are consentrating on looking after yourself as well as your family. That can be so hard sometimes, taking the time to make sure your own needs are taken care of too. All the best and the energy, short term memory will all return to normal I'm sure.

    ReplyDelete
  2. As usual - well said! Not sure why you are worried about your decision-making ability - Your decision to develop and implement your post-rad recovery plan (and esp NOT returning to work just yet) is bang-on! You are one remarkable lady! Lee

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