Skip to main content

Round 4, take two

First, I must excuse my tardiness.  Many of you have been so kindly inquiring and I should have posted last week after my 4th round but I'm not sure what happened. Well actually, I do.  Time seems to have escaped me this cycle and I've been having a hard time remembering things as of late.  Nothing catastrophic, I mean I've not forgotten any of my kids at the grocery store or left the house with the oven turned on, but on several occasions I've forgotten that I started cooking something.  No fires as of yet, but Ellen is no longer allowed to turn on the stove! 

Perhaps less destructive but more self-destructive, I've begun to forget where I'm going when I start a sentence, or what I was about to do when I enter a room.  My catch phrase has become, "what was I doing/saying?".  I know this seems trivial as we all do this.  And if you know me, you are likely thinking, "yup, that's Ellen!"  But I have taken it to an all new level.  It has become a regular occurrence, happening several times a day, and each time I struggle to remember what I was about to say or do.

It is reminiscent of how I felt back in February in my third trimester, trying to express a clear, coherent message while leading a meeting at work (and failing miserably).  Thankfully, I had the luxury of pulling out my "Preggo brain" card back then.  Then, in March, as I ventured in to new motherhood again with round-the-clock feeds, I had trouble forming a thought, much less communicating it.  My "Mommy brain" card came in very useful.  Now that Imogen is 4 months old and sleeping through the night, I can no longer claim preggo or mommy brain.  I wonder if this is the dreaded "Chemo brain" I've heard about coming a knocking?  It would make sense that as chemo affects one's entire organism, the brain, and short-term memory, would be affected too.  I had just never entertained the idea of it happening just yet; it seemed more of an end of chemo or post-chemo thing in my mind.  So if you find yourself waiting for me to turn up at the coffee shop, just smile and go home.  Hmm, if this truly is a short-term memory thing, I predict this blog may become more difficult to write with time.  Undoubtedly, it will become far more humourous to read!

So back to our story.

I left off at the whole Neulasta/Neupogen debate.  It's funny, because it actually became just that, a debate.  My oncologist's nurse called to inform me that she was prescribing Neupogen (1 injection daily for 10 days) to be done for each of the remaining 5 cycles, instead of Neulasta (1 high dose injection per cycle).  This was to start with my upcoming (round 4) AC cycle.  This set off alarm bells.  Why 50 injections vs. 5?  Particularly confusing was that I already had in hand a prescription for Neulasta in preparation for cycle 1 of Taxotere (later this month).  What had changed?  Was the daily low-dose Neupogen better suited to me than the higher-dose Neulasta?  So I called her on this.  Perhaps it was a shot in the dark, but I asked her to reconfirm why we were changing from Neulasta to Neupogen.  I piped in that both drugs were covered under my drug plan, so cost was not an issue.  I was put on hold while she had a lengthy pow-wow with several of her colleagues.  In the end, and after some debate, they conceded to prescribe Neulasta (1 injection per cycle).  She wasn't sure why the original orders were to go with Neupogen, but thought perhaps there had been an assumption that Neulasta was not covered under my drug plan and they were trying to save me some costs (Neulasta is much pricier).  So just like that, I changed the course of my treatment.  It wouldn't have been catastrophic to endure the additional 45 pokes, but it would have made things even more chaotic here at home, what with the baby, kids and daily injections. 

The phone call ended with her telling me, "good for you for staying on top of things and looking out for yourself".  Although it was nice to hear, it only reaffirmed what others have told me.  Do your homework.  Look out for yourself.  And this is the advice I offer to each of you.  Don't be afraid to question things that don't seem right.  I by no means mean to imply that anyone acted wrongly - on the contrary - my cancer team is top notch and I know I am in the best hands possible.  But at the end of the day, I know my own story better than anyone else, and as such, I am my best advocate.  And I don't needle anyone to tell me otherwise! 

Take-two:  Final cycle (4) of Adriamycin/Cyclophosphamide


Here is what went down.  I decided that as I was now a pro at this chemo thing, I could go it alone this time.  Actually, I'm not sure why this hadn't occurred to me sooner - resting back in a bed under warm covers for an hour and a half with no kids calling my name?  Heaven!  I settled in with a magazine, a cup of tea and a huge smile and kicked back.  I seriously looked so relaxed that I actually felt bad for my pod-mates, staring at me (again) with confused looks.  Is she actually enjoying this?  You know what? I think I was.  Fourth round means I am at my half-way point, so bring it on is what I say!

The infusion went really well and I felt great that night and the following day, which unfortunately was totally misleading.  Perhaps it was over-confidence - remember, I was back on the Decadron (steroid anti-nauseal) this round - or maybe it was just chemo being chemo and finally showing me its true colours.  The nausea was kept mostly in check but what came next was so different from the first three rounds.  I had sudden, unexplained weakness.  Not physical or even mental fatigue (as I had anticipated), but straight out can't-get-out-of-bed-and-no-amount-of-sleep-will-change-things weakness.  There was also the I-need-to-sit-down-right-now weakness.  I was eating quite well, far better than last round, and I was able to drink and stay hydrated.  I was also able to sleep through the night and never felt tired.  But I had to will myself to raise my arms.  It was surreal and kind of creepy, actually.  It was the first time I'd felt as though I was not in control of my own body.  I can't say that I liked the feeling much, and was very glad when it passed 3 days later.  This time, I also experienced extreme photosensitivity to the point where I had to wear sunglasses indoors.  I was too cool for me, and poor Imogen wondered who had replaced her Mumma with bug eyes.  It was 5 days before I felt well enough to perform any daily functions, and a full 8 days before I was back to normal.  Yowsers!  All of you mothers out there who know the cardinal rule that "moms don't get sick", well, I'm sure you can see this didn't go down well.  My poor husband!

Recovery

After it became apparent that my new state of uselessness would keep us from camping again, I became stubborn and set out (with success) to book a last-minute chalet rental at the same lake towards the end of the week.  With all three kids in tow, we packed up and headed out of town on day 7 post chemo.  I wasn't sure if this was wise as I was still pretty weak, but as it turns out, beach-side chalets make superb chemo recovery units!  12 hours after arriving I felt better than I've felt in months, and one our second day I had a brainstorm, a true feat for me!  Why am I staying in town in between rounds when I could be enjoying the fresh air, lake and sun with my family?  I'm on maternity leave after all, and the kids are on summer holidays.  So I am now on a mission to find one more last-minute rental for early August (someone please remind me to finish that task) and we have already secured a beautiful cottage at the end of August.  They should really list "fun in the sun" in one of the myriad "cancer coping strategies" brochures I received after diagnosis.  Oh, and my photosensitivity actually disappeared at the beach.  It was truly miraculous! 

And speaking of miracles, you know what's coming...

Blessings Report:

Finding a chalet at the last-minute in an otherwise completely-booked campground
Discovering spicy poutine from Burgers and Shakes.  What a find!
The gorgeous warm summer weather that seems never-ending...
Instead of going to the office, spending early mornings pool-side while the kids take daily swimming lessons
Seeing Jack McGuire perform and remembering long-lost friendships I need to rekindle
Friends like A.S. who requested a handmade quilt from Victoria's Quilts on my behalf (victoriasquiltscanada.com), and the dear folks there who made it
My brother and sister-in-law who drove all the way from Connecticut to drive me to chemo (and to visit)
The Costco deli clerk who bent the rules and accepted a last-minute phone order for a birthday party sandwich platter after my frantic pleas
Yummy homemade piggy and cow cupcakes
Chiropractic care, a godsend
My darling Soraia who turned three today and reminded me what life is all about
My brother Roy who shares her birthday and who will always be 5 years older than me
Realizing that reaching out in times of need is a sign of strength!

Imogen and I looking like twins, taken on Soraia's 3rd birthday


Comments

  1. Ellen - your blog is beautiful, just read all of your posts. Funny. You've got that one down. Once all of this is done and you are back to your healthy start, keep up the blog!!

    Tim and I have now moved to BC and I am teaching yoga and studying energy medicine. There are some great techniques to support chemo and radiation therapy - I'd be happy to direct you to info, teach you a few things or send you info on practitioners in your area if you are interested.

    Maria :)

    ReplyDelete
  2. Hi, Ellen:

    I think I was at the meeting that you're referring to. At least I think I was. *sigh* I chalk it up to my idiot brain. :)

    We miss you dearly and look forward to your return!

    - Phil N

    ReplyDelete
  3. Hey Ellen! You write beautifully and your blog is great. So much change since first meeting you at Meg's house when Salvador was a wee little dude. But you still sound like the sunshiny person I remember. Thanks for sharing all of this -- amazing to read you and to be inspired and moved by your words. Hugs all around!
    Anne-Sophie

    ReplyDelete
  4. Hello Ellen,

    Eu e a Melanie enviamos muita energia positiva, continua com coragem, e continua a escrever, escreves muito bem e podera ser um lindo livro.
    Abraco de Jose Carlos et Melanie
    If you need to rest aferter all this, come and stay with us, we can just go fishing...

    ReplyDelete

Post a Comment

Popular posts from this blog

Faith

We were just a few days into December when my 9-year-old came home from school demanding an explanation as to why our family couldn't have an Elf-on-the-Shelf. Now I'd had this discussion in previous years, but it was clear to me that he wasn't going to let it go so I had to choose my words quickly and carefully. I was reminded of his favourite holiday film, The Polar Express, in which a little boy comes to believe in Santa, and that magic stays with him into adulthood, unlike his friends and sister, for whom the magic disappears. That was it, I had my retort.
"First off, remind me how this elf works. How exactly does he move about?" to which he replied, "First you must name the elf. Then it comes to life and starts doing all of these crazy and fun things at night" - I interrupted, "So you have to name him and believe in him for the magic to work?" "Yes, that's right". I could almost see the finish line. "Oh dear...well here&…

FIVE

Wishes do come true. But only if you make them happen. 
It was late evening on March 21, 2012. I was standing on my front porch, surrounded by the chill night air, and listening to the melting creek bed whispering notes of spring. I had just left the hospital and my MRI and there was nothing to do now but wait, and live in this moment. 
I stared up at our second storey windows. Inside, my children slept soundly, oblivious to the turmoil in their mother's mind. I turned my head to the baby's window. She stirred. There would be no nursing tonight, the MRI's contrast agent coursing through me had nixed that. At 15 days old, she was already getting used to my not being around. I wondered if this was to become a pattern. Would I be there to hear her first words, to see her first steps, and to watch her enter kindergarten? I was angry and determined to do away with most, if not all of these unknowns. I didn't know how I would do it, but I was going to give it my all.
Of course,…

Thankful for another school year

This morning was as glum as they come. While tomorrow we will be celebrating the first of many days of summer ahead, this morning the air was rife with mixed emotions - those of celebration, of sadness, and of impending farewells. It was the last day of school, and no amount of Canada-themed spirit day hype or paraphernalia was going to mask that. 
I couldn't quite wrap my head around my children's thinking, I mean, summer holidays were about to begin! It was only after I left them at school and walked back home that I realized I had forgotten what it's like to be in my kids' shoes on this joyous day. 
I remember the celebratory cheers at the final bell and the rushing out of school to the tune of 'no more homework' and 'swimming pools here we come!" But as I carefully thought back to my fourth grader's face at the breakfast table, I dug deeper and started remembering all of the other bigger thoughts that came with this day. The joy at having found t…