We’ve learned the hard way there are people who have no idea that what they say to cancer patients and their support systems is inappropriate. Andrea published a brilliant post about this, I See Dread, People, and I’d like to offer a refresher with five helpful hints of my own.
AT TIME OF DIAGNOSIS: Upon learning about the diagnosis, be supportive and keep your own horror stories about the disease (or any other less than positive stories) to yourself.
HELP: If you offer help, be specific — for example, ask when you can have the kids over for a play date or offer to send a meal over on a specific day (bonus: ask about any food alergies, nutritional needs and dietary restrictions).
DURING TREATMENT: Check in during the treatment process and renew (or offer new) specific offers of help. Make it known you’re thinking about the person and their family.
AT MILESTONES: When a milestone has been achieved, be a part of the moment by celebrating with the person and their family. Something like, “Congratulations!” is a very good start. You can freestyle that by acknowledging the difficult journey it’s been for the person to get to that point and how thrilled you are for the person that they’ve made it to this milestone. “Be there.”
SHOW GENUINE INTEREST: If you know the person has a blog, follow it. It’s a great place to stay up to date and even leave messages of support and positive thoughts at regular intervals. It’s also a great tool to know when help is needed the most. If you know the person has a blog, catch up before you contact them. It shows you care and their health and journey is important to you.
I’m drifting these days. I’m distracted and almost dizzy. My limbs and digits are groggy and stiff.
I’m moving slowly. I’m thinking slowly.
Maybe it’s a side-effect of being drug-free.
Here’s what I did today instead of my 30minute exercise tape:
Yes, there are worse things than baldness!
p.s. Can you match the tresses to the actresses I stole them from?
Today, at 4:00pm, I am officially done my final 21 day chemo cycle.
Soon my vision will be back, my hair will be thick and this winter’s swerve will be no more than a faded string of snapshots, marked most memorably as the beginning of our richer, happier, more consciously lived lives.
Since early December, meal planning has been a mix of Broken Telephone and Pin The Tail On The Donkey.
Mark without the inside scoop on pantry inventory, ingredient subtleties and brand preferences. Me without SMS or cell phone access.
That changed yesterday. I shopped, myself.
Vegetable selection was thrilling.
Chance encounters with neighbours, refreshing.
And dinner was delicious.
I continued to work through the diagnosis, the surgeries and the corresponding recoveries.
I put my head down and powered through the chemo.
Maybe it’s catching up to me now. Or maybe it’s all my recent celebrating, real-life and staying up way past eight.
Whatever the reason, I’m spent.
Procrastination now drags my daily exercise to almost the full day and, due in part to my hole-falling-into experience on Sunday, I’ve had to replace my daily jog with a second leisurely stroll.
But I’m alive.
Now that chemo’s over and Andrea’s nearly completed her full recovery cycle (which means she’s about a week away from being able to be out in public without an elevated risk to her health), we can start thinking about the next stage of her cancer treatment… radiation.
We love Andrea’s radio-oncologist. He’s an incredibly nice and patient man. We experienced a remarkable trait of his during our consult with him last week; even though he may know where we’re going with a particular thought or question, he waits until we’ve finished speaking before responding. He doesn’t jump to conclusions or feel it necessary to cut short our thoughts.
Andrea will have a CT scan in the next few weeks. During that appointment, a technician will mark the two locations at which the radiation treatment will be directed. This ensures the treatment is always directed at the same spot.
Beginning in May, Andrea will have radiation treatments each weekday for six weeks. Despite the frequency and duration, radiation seems much less scary to me than did chemo. There are no meds, and no physically- or emotionally-crippling side effects.
We’ve been told to expect Andrea to feel fatigued over the course of the treatment as her body works to regenerate cells that are being killed off each day (just as it got the regeneration process underway from the previous round). We’ve also been told to expect that Andrea will present sunburn-like skin irritations and discolouration beginning in the treatment area around week four of the program.
After she powers through radiation, Andrea will begin hormone therapy. Given what we’ve been through, that’s not as far off in the future as it sounds.
Since this journey began, I’ve been ruthlessly disciplined:
But yesterday I caught wind of a need to give up dairy:
Dairy too? Come on!
In December, 18 weeks seemed like an eternity. Now it’s April and we increasingly talk about stages — particularly the most scary stages — of our journey in the past tense.
Cancer treatment comes with a lot of stresses, uncertainties and decisions which make any period in the future a scary place to be heading. When I think about my concerns waiting for Andrea’s MRI and then for the results, I’m instantly transported to where my mind was and the feelings I was experiencing at that time. The same is true of her surgery and awaiting the pathology results which we repeated for a second surgery. There was also the cardiac scan and bone scan.
Chemo has always been the beast that scared me the most. Today, chemo will deliver its last strike and in a few weeks we’ll be able to speak about this stage in the past tense.
I think I’ll celebrate with a big ice cream.
At 3:00 this morning, Bayla dragged me in to her bed.
Within fifteen minutes, Phaedra had peed full force at my trying-to-get-back-to-sleep feet.
A brief but loud battle for clean beds ensued. Phaedra went to her crate, Bayla and I to Lucy’s bed and Lucy in to sleep with Mark.
Mark was up for the rest of the night.
It’s so nice that life is getting back to normal.
The last six to eight years have been some of the best of my life — so far.
I’ve been a mom to two fabulous toddlers, preschoolers, school-agers and then awesome eight and ten year old girls.
I’ve made, maintained and enjoyed great friendships, hosted and participated in terrifically silly get-togethers, contributed generously to the world of children’s literature and literacy, thoroughly enjoyed four PABs, two PCTOs, one KidLitCon and the online and offline social media scene, and revelled in a whole slew of creative projects.
I’ve taken risks. I’ve grown. I’ve been more truly me than my crazy twenty-something years allowed.
And all the while, that cancer grew.
So, as the end of chemo inches into sight and I nervously ponder my re-integration, I remind myself that I’m not actually an alien among the healthy.
In fact, aside from the effects of the treatments themselves, I’m physically healthier now than I’ve been in six to eight years.
Ignorance was bliss.
But booting cancer and moving on is bound to be better.
I don’t know why, but that’s it.
For the first time since my first surgery way back in October, I’m throwing in the towel and going right back to bed. No juicing, no supplements, no exercise, no shower.
I know it’s chemo and I’m grateful to be doing as well as I am.
But I’m outa here and I mean it this time.
I don’t need a justification (I’m living it), but if you do, here’s a partial list:
- two days of throbbing aches all over, numbness, disorientation, weepiness and stomach woes – no appetite, limited taste, sore throat, tongue, ears, teeth, head
- two nights of writhing in pain and delirium
- one thawed canal
- one slushy, grey world
- two thread-bare, ten year old boots soaking two already aching feet with icy slush
- one first ever sleeping pill at 3am this morning
- one puffy, quickly aging, eyelash-free face
- one transmuting port-a-cath
- and did I mention our insurance company and broker are both robbing us blind and ruining our lives?
- oh ya, and the police knocked on our door early this morning informing me that I’m due in court April 28 and 29 as a witness against my bully of a “father” as a result of his attempt to break in to our home on April 5, 2009?
Is that a reason? I mean, is that a reason?
Oh, and today’s my half-birthday. Which means it’s six months since this all began. Halfy Birthday to me.
Andrea and I were married on February 6, 1999.
We had a small wedding in one of our favourite restaurants at the time, Le Panaché, with close friends and family who could show up at our door or us at theirs and not have it be a big deal. Include the minister and the two of us and you have an intimate setting with 25 people.
For some reason we’ve generally had a hard time remembering the exact date we got married. That is, we know it was around February 5, 6 or 7. So, our anniversary hasn’t been celebrated on each of those days over the years.
There have been years we were caught off guard by phone calls from family wishing us a happy anniversary. There was the year we celebrated by having Kraft Dinner with one of our daughter’s friends and his mother during a play date.
We celebrated our tenth anniversary in style, though. We had a fantastic dinner at Le Café in the National Arts Centre.
While it may sound like a cop out, I truly believe that if you don’t make your relationship count on a daily basis, there’s no reason to make it count one day each year. We’ve always made our relationship count everyday — this year in particular.
Okay… this year Andrea and her best friend remembered the date and I didn’t. It was two days ago that we all had a good laugh about.
This year we’ll celebrate with Andrea’s brother, David, who is en route right now from Montreal to spend the day with us. Like his other visits, we’ll chat and laugh A LOT and play games with Lucy and Bayla. You could say we’ll be celebrating in style, again. And, we’ll be doing it on the right day.
Recovery from chemo2 has been miles better than chemo1. Correcting my inadvertently doubled steroid prescription allowed me to sleep the nights immediately following my infusion and to skip the hangover that kept me moaning on the couch days 5, 6 and 7 last time round.
Still, late Tuesday afternoon, I fell into a Sudden Valley of self-pity.
Maybe it was the lurking nausea that makes me gasp at smells, repetition and gross thoughts of all kinds; the accumulating isolation and detachment from normal, happy, healthy life; or the banning of all my favourite treats.
Whatever the reason, I fell fairly hard and spent most of two days in a smile-free limbo that included two temper tantrums, relentless grimacing and the frenzied consumption of a family-sized bag of Miss Vickie’s Salt & Vinegar chips.
And then they opened the Rideau Canal Skateway.
No sugar, no caffeine, no alcohol, no germs. Just the swish, swish of strong legs on blades on ice.
And life is good again.