Thank you, whoever you are!

Tuesday morning as I was trying not to rise to consciousness because that would mean starting to worry about my pathology full-time for another day, Tessa wandered up to my room and said:

“I got a weird call just now.”

“How weird? A breather?”

“NO! Not that kind of weird, a nice weird…”

“So, tell me?”

“No, not til later.”

“What do you mean later? What weird call can wait?”

“This one. It’s kind of about you.”

Then followed wheedling, and strategic questioning, and some reverse psychology, none of which worked. So I had to wait until late afternoon to find out what “weird” was.

Mid-afternoon Tessa cleared the kitchen table where she was working on her philosophy course. Not a big hint. Eventually, a really smiley young woman came to the door with a large black cloth bag. Tessa was grinning ear-to-ear, so was I, but like an idiot, since I still wasn’t clear. The woman said that a friend of mine thought that I could use some help with meals right now, and so had arranged to have FIVE DINNERS, from Presidential Catering, delivered starting that night. How could anyone have know the stress level in my head and house? I haven’t given a care about food for this week, and the kitchen shows it. If it wasn’t for Tessa, no one would be eating anything.

The menu was developed by an oncologist. The ingredients are organic. The chef is five star. We have had salmon in citrus olive oil, baby bok choy, rice, an arugula, tomato and sunflower seed salad with a balsamic vinaigrette, incredible cauliflower soup (we’ve had it hot and cold and both are delicious), quesadillas with fresh salsa, and shepherd’s pie, all incredibly delicious. And two more meals to come.

This is such a thoughtful, insightful gift, and the timing couldn’t be better. The worry over this pathology report has had me in pieces. Even now, there is no energy in me. So, thank you, whoever you are. I completely respect your desire to remain anonymous, and that makes this gift even sweeter, that someone is generous enough to give a gift on this scale, and not want any credit or public acknowledgement. Know then that my appreciation is huge, and I feel very humbled by your kindness and thoughtfulness.

And I’d like to say that if anyone is looking for a caterer, I thought Presidential Gourmet was a large-scale catering firm, but these fresh, delicious, clever meals show they can do anything.

Thank you again. Curiosity may have killed the cat, but I’m bigger and stronger than the cat. But maybe someday you’ll tell me who you are?

Crack out the fireworks: Best possible outcome I could have hoped for!!!

This is what is going on in my backyard tonight. Bring a blanket! Courtesy of Nagoya-info.com http://nagoya-info.com/4249/the-beauty-of-hanabi-in-japan/

 

I am so happy! Even though the surgeon told me my pathology wasn’t available yet, THREE WEEKS after surgery when it should have been ready in seven days, and then he sent his nurse off to find out why, and I stood in the hall afraid I would actually throw up, and his nurse came back and said it was just being signed off and uploaded, and we—Tessa, my man and I—went to sit down and wait, when he finally handed it to me and said, “Here you go. It’s all gone,” I could barely believe it.

“You mean I had a complete pathological response?”

“Yes.”

“So this is the best possible thing?”

“Yes.”

“So this gives me the best prognosis?”

“Yes. There is no cancer in any of the nodes, except for the first one, of course [the one he removed for the diagnosis]. And none in the breast tissue.”

And he handed me the report, which Tessa and my man and I went over line by line, with varying levels of understanding. My oncologist will explain it tome in such detail in a week that she said I will understand every single word of it. For now, it says no evidence of cancer and that’s enough for me!!!

THANK YOU, EVERYONE WHO READS HERE, AND THOSE WHO HAVEN’T YET, FOR SENDING GOOD VIBES, PRAYING, CROSSING FINGERS, KNOCKING WOOD, STABBING CANCER DOLLS WITH SHARP OBJECTS (you know who you are), FOR SUPPORTING ME AND BEING THERE FOR ME. I NEEDED YOU AND YOU CAME THROUGH. THANK YOU!

Here is a beautiful display of Kumano fireworks, the best in the world. Turn off all the lights in the room, go to full screen, and imagine you are in Japan enjoying hanabi.

 

 

 

Hair, and does Luka even notice mine—or lack thereof—anymore?

Last week I got the fourth hand-knitted hat from my friend Annie in the post. It was so cute, and I was so happy, I got Tessa to take a photo of it with my camera, and then I sent an email with the photo to Annie, from my phone. When I didn’t hear anything back for a couple of days, I thought, she is so busy! And then I felt guilty for not being at work myself!

I figured out today that none of the emails I have written on Yahoo on my phone have actually gone out. They say sent on the phone, but there’s no record of them when I check on the account on the computer. HOW IS THAT POSSIBLE?

That is confounding. But what makes me smile is Luka’s reaction to the photo when I showed it to him when he got home. By that time I had taken off the hat, wig, necklace, and changed into hanging-around-the-house clothes.

I handed him my phone with the above photo on it. I said, “Check out the new hat that Annie sent today.” He gave it a good look, and handed back the phone, saying, “That hat looks great! You totally don’t look bald in it!”

I love him.

Sixth chemo: behold my poisoning, and reconnecting with an old friend

Trying to keep this message in mind as chemo progresses. But when I’m not falling asleep sitting up, it’s my nature to try and cram in as many activities as I can. Thank you to the Keep Calm-O-Matic for endless Keep Calms…. (http://www.keepcalm-o-matic.co.uk/p/keep-calm-and-relax-294/)

Complain, complain! I am really hating this paclitaxel. Right now my legs are aching so much I can barely think, or think very effectively. I take over-the-counter Claritin—weird but true, women all over take it and report that it works—for the bone pain from the Neulasta shot, but this is a different pain that the Claritin doesn’t touch. So, I have a couple of yellow pills on board now, and hope to be feeling better (or asleep!) in a little while. [N.B.: did not fall asleep, in fact stayed up until 5:20 a.m. watching episodes of Fringe on Netflix with Luka. Yay March Break and complete irresponsibility for following a sleep schedule]

My sixth chemo was three days ago. It’s March Break, so I thought what a great thing for Luka to do on his holiday: accompany his mum to the medical day care for eight hours or so. Hardly! I left him at home, snoozing, and I went to St. Mike’s for 8:30 a.m. (Tessa had an overnight babysitting job), so I was flying solo. But the flying solo ended when my longtime friend Kelly walked into the exam room. We hadn’t seen each other for an embarrassing length of time, but like the old friends and kindred spirits we are, we picked it up like it was 2004 (that’s when we last worked in the same office, but we’ve remained very good, if often silent, friends). It’s a weird thing to call a friend and say, “Hey! How were your holidays? I got a cancer diagnosis from Santa, yeah, what a drag. What did you get?” So I chickened out from telling friends I’m not in constant contact with, and who’s kidding who? With a single-parent household, full-time job, kids, pets, etc., who can keep in constant contact with friends? And no suggestions to get on Facebook, please. I find it far too Big Brother for my privacy threshold.

This was my second round of Paclitaxel, my sixth chemo.

• The hand-foot syndrome, with its burning, swelling and blistering, seems to be over (bang your knuckles against anything made of wood, please), to be replaced by
• koilonychia, the gross prospect of my nails lifting off the nailbed and possibly falling right off. It’s starting already, with the nails flattening out and foamy-looking guck underneath.
• My white count is double what it should be, but with the steroids and immuno-boosters, and this cough/cold/pink eye/laryngitis thing I’ve had since the end of November, who knows what it is. So I continue to take my temperature every four hours and will know when to head to the hospital (that’s a fever above 38°C or 100.4°F, which I’ve had four times, but it has always retreated after 100.7 so I stayed put. The last thing I want is to go to emerg to get hooked up to IVs unless absolutely necessary.
• Nausea. I’m pretty sure this version of Taxol I’m getting is not supposed to cause any nausea, but I’m getting waves of it, chills, sweats, etc., so I’m taking those meds.
• Exhaustion. I got it. I slept two marathon sleeps between the fifth and sixth chemo: from 10 a.m. Saturday (I’d just driven to Toronto from Stratford at 7:30-9:30 a.m.) to 7 p.m. Sunday (with breaks for coughing, drinking, sleep-eating) and from 5:30 p.m. to 10:30 a.m. the next day. When it hits, there’s nothing I can do to stay awake.
• I’m going to lose my hair!!!

I got crap from my chemo nurse, with Kelly as her witness, that I am “doing too much.” I have to say I was feeling really energized having Kelly there for the day, and of course we were talking nonstop and laughing, and for the first time my nurse put me in a single room with a bed for my chemo instead of one of those chic beige naugahyde lounge chairs, but I could not lie down because I was having too much fun catching up with Kelly. Plus my nurse heard about my driving to Stratford and London and back.

She said that I need to sleep, relax, let my body be sick and heal. She says she sees women like me who keep pushing and don’t listen to their bodies and let their brains lead the way. After six chemos, she said, I have to stop and heal. I am trying to take this to heart as I sit in a basement parking garage waiting for one of the kids to finish an appointment. “Sure, I’ll drive you, and I’ll post to my blog while I wait for you,” I said. Hmmmm, so do I resemble my nurse’s remarks?!?! Yes. As soon as I post this entry, I am going to relax (after a quick trip to Dollarama, Sobey’s for a prescription, and a couple of groceries 😉

How feeling crummy led to feeling grateful…

Even if you feel good, I’ll bet looking at this illustration makes you hurt just a little, somewhere. Thank you to http://criticalscience.com/chronic-pain-psychosocial-interventions.html

I cannot say strongly enough how I hope the next seven and a half weeks of Taxol chemo fly by. If I were to word that hope the way I want to, the keyboard of this computer would light on fire. Taxol SUCKS. Not to complain, but the aches that come with this chemo, mixed with the hand-foot syndrome pain of the last chemos, which is supposed to stop but has not yet, and just general fatigue, is making me too miserable for even me and Clover to bear.

Right now I am hunkered down on the couch under a huge blanket with my feet and hands exposed, waiting for the pain pills to kick in so I can feel human and move without feeling like I’m going to snap a bone or grind a joint to powder. This is supposed to be from day 2 to day 7, and I am using up my pain pills pretty fast. Ug. Now I will try to stop complaining and move on to more appropriate use of my awake time—thanking people.

One thing feeling lousy does is make me realize how ungrateful I have been. Remember the amazing fundraising that Tessa did, and all the people who gave so that I could get a wig of real hair, which I so, so appreciated? Have I written to all of those people to say thank you? No. Did I send a real thank you to my friends at work for the amazing gift basket, stuffed with goodies—real goodies? No. I made cookies and brought them in to the office for everyone, but I’ve done that other years. There are people who sent money who haven’t heard boo from me. I am ashamed, and feeling grinding pain and feeling sorry for yourself because you are bald (and it’s not a good look for you), and your fingers are shiny red and splitting, and skin is hanging off them, and you can’t spell the word “answer” (I’m writing a note to Luka’s teacher, and I can’t spell the word—where does the W go? after the N? after the S? with a silent S at the end? or the R? why is there a W? and I couldn’t think of another word to sub in, then I wrecked the note because I tried the W after the A, and had to throw it out), and your intestinal tract will never work without pills again, and you have to be no more than 20 feet from a bathroom at any time, well, why not just get down on yourself for not thanking people???

So here are just a few of the people I have not thanked properly, outside the wonderful people who contributed to my wig, because those are private thank yous I will be writing.

Zoe, dancer and chef extraordinnaire, who upon hearing that her very good friend Tessa’s mum had cancer, did what every girl worth her salt does, and ran to her kitchen and cranked out three HUGE casseroles: Zoe’s Pasta Bake, Turgetti and Chicken and Cheese. Each one would have fed a family of 10, so we cut them all up and put them separately in freezer bags. They have come in so handy when we want a comfort food but there is no one to cook it and no time even if we did. Thank you Zoe!

Scott, our next door neighbour and godfather to all three of my kids, who has snowblowered out our driveway at least twice (but I think more, for sure), and this morning came over and shovelled the driveway, walk and porch. Thank you very much!

Mara, my friend from work and a very, very talented artiste, who said, upon hearing that my hands and feet were on fire with hand-foot syndrome, “I know what you need for that!” and sent to my house the very next day Thompson’s Calendula Creme, which not only stopped the burning, but kept it at bay longer than the other creams I had collected. Thank you Mara for the fabulous cream, and for the mint tea, protein powder and Aztec chocolate drink, too!

Pam, my longest-time best friend, who came to my rescue with a large infusion of cash, and does not employ big scary guys to come to my house and remind me how generous she is! Thank you Pammy!

Annie, a friend from work and beyond, who knit me my first bald head winter toque, and followed that up with two more, each one sent under separate cover to my house because she understands the special excitement of getting something in the mail when you are home every single boring day of the week.And each one is softer than the last one. Thank you Annie!

And that is it so far. Talk to you all later!

A tisket, a tasket, my friends sent me a HUGE gift basket!

Now, this is a gift basket!

Last Thursday I coughed all night, and that, in combination with steroids for nausea, and non-drowsy Claritin to fight bone pain from the immuno-booster shot, I was unable to get up at 6 to get Luka to his school for the 7 a.m. school bus to Mount St. Louis Moonstone for the school ski trip. It wasn’t hits fault that I was making sandwiches at 3 a.m. because I couldn’t sleep. Or that I then couldn’t get up. What’s a mother to do? I drove him the 131 km to the ski hill, coughing and sipping tea, and found his teachers, then turned around and drove home. Then I had my third daytime nap since the chemo started.

That afternoon, a huge gift basket arrived. I’d talked to Diana, fellow editor and friend, and she’d arranged to have it delivered. Not only did she make those arrangements, but she’s the person who put the basket together, taking up a collection from my friends at work, shopping with the insight of a friend and daily colleague, and then taping and cellophaning and bow-tying. Tessa took photos, so now I will show you all the goodies!

My gift basket on the piano. On the wall, a pencil sketch of me from 1970, showing my somewhat moody disposition that day, and my even-then long hair.

Number one most popular item in the gift basket—this smoothie and slushy maker has been used every single day since it arrived, sometimes twice a day. With mouth sores and my sore throat, this is a godsend. Five Alive, orange juice, cranberry juice (vodka added after), ginger ale and Pepsi have all been turned into slushies. And the protein powder has made its way into everything but the vodka and pop!

Once again, Diana knows me so well. Lavender is one of my favourite scents, the Nighty Night tea helps with my trouble sleeping, and nausea pills? Who on chemo does not need those?

Such a pretty cup, complete with stainless steel diffuser and lid. I am notorious for making cups of tea last forever, so a lid is an excellent thing.

Yes, these teas are as delicious as they look…

L’Occitane is a beautiful store with only beautiful things inside, and Diana knows it. She picked out shea butter hand cream (my skin makes a crocodile look moisturized!), soaps, gels, even the extremely cute makeup bag.

Yes, I’m spending a lot of time on the couch, so this uber-soft throw is perfection. The candles are beeswax, and the soap is lavender.

Hot chocolate and milk chocolate—the best!

So, thank you very, very much to all my friends on the fourth floor at CAMH. Every item in this basket is perfect!

I have 99 problems, but my hair ain’t one!

I might start a list of 99 things on this blog…

Thank you, Jay-Z, for the title of my blog this morning (I hope he sees this, despite preparing for the Grammy’s on Sunday night), albeit with a little change. 

I do have 99 problems, but after my visit to the wig centre yesterday—Continental Hair, Toronto—my hair is not on that list; instead, it is on the top of my list of good things that have happened and are happening to me. The stylist gave me more highlights, all very fine and hyper-natural looking. She then glossed them down a tone or two so there was no chance of brassiness. She feathered some of the weight out, added piecey bits to frame the face under the main, longer hair so as to hide the edge of the wig if I decide to wear it up.

It was an amazingly busy morning there, with Elfi slipping back telling stylists of more and more appointments and assignments, but still, the atmosphere was chill (attitude), warm (how are you? can I get you a coffee). attentive (are you sure you are warm enough?) and like hanging out with a new group of girlfriends. Because many clients leave their hair behind, stylists get to sit and style hair on a wig stand without a client to chat with, and I was in the enviable position (for someone who likes to listen to and tell stories) of having two stylists and Elfi to chat and laugh with. We went through what styling wigs is like, the responsibility they feel to their clients because of the special emotional situation many of them are in with regards to losing their hair, industrial tech music in Germany, ’80s bands, boyfriends, good boyfriends, bad boyfriends, new boyfriends, good people who randomly come in to donate their hair to Continental’s Wigs for Kids program (free wigs and partials for kids under 12 with any medical hair loss), alternate realities, the X-Files, Fringe, how red wine and black pepper heated together and taken at bedtime will help you sweat out a cold, and about 20 more topics. All while they worked away, and while I blogged!

Maybe this will be my last post about my hair.

I cannot say enough about my new hair. Have you noticed?

Blogging while getting my hair washed…

Here’s a new one

I am blogging from the third chair from the left, while getting my hair washed, at Continental Hair. Warm water is cascading down my hair, while I sit and tap away at a laptop. Am I worried about water falling on the keyboard? Hardly. My hair is in the sink four feet to the left of me.

I am here this morning to have highlights put in my new hair, and maybe have a few more bangs cut. I am also going to get my head shaved, because I’m finding that the amount of hair that is falling out is actually freaking me out more than the thought of a bald head. I have reached that tipping point. I do quite like my faux-hawk, but the bald patches are increasing, and if I have to buy another bottle of Drano for the tub I will feel like an environmental terrorist. I will keep my eyes closed, and they’ll put the wig on, so any emotional reaction to being bald can safely be had later tonight in the privacy of my own bathroom.

I’ll post photos of my of my bald head when Tessa takes them, and only if I am not to spooky-looking.

Friends

Last night, my ex-manager and still extremely good friend Leslie Ann came over after work and we had a great visit. Clover barked and went nuts, which he did all over again when James arrived, we had pizza and gabbed and laughed and caught up. I’d like a visit like that every Thursday night, LA. Make a note of it!

Dentalwork on chemo

I have a dentist appointment to have a crown fitted today. When I told my oncologist I had to have a root canal, and I hoped that it wasn’t a problem, she said, “No problem. No dentalwork on chemo!” But I needed the root canal, because the whole two months’ time I was running around having umpteen tests done for my cancer, my mouth and jaw was killing me and I was popping pain relievers rather than going to the dentist. So I raced to a new dentist who saw me the next day, and got me a root canal referral the same day, all the day before chemo started. Today, I go get a crown fitted, because that kind of dentalwork can be done on chemo.

The C5000 Power Port

The day after my surgery (some may call it a procedure, but when you cut through my skin and fat with a scalpel, I call it surgery) this hurt like fire. Two days after, it just felt weird. Last night, Tessa cleaned the two incision sites, as per instructions from the hospital, and applied new dressings. I didn’t look, but she reports the incisions are tiny, clean and there is no bruising. He must be some doctor, because with all the blood and pushing and pulling and shoving and wiggling, I figured I would be one giant bruise. I ran my finger over the dressing, and it feels HUGE. Tessa says it’s riding a little high under my skin. Blech!

Buzz time (and I’m not talking weed)

Looks like it’s time for my buzz cut. Goodbye hair, goodbye friends and reader friends. See you later!

A lifetime on my head, in minutes, on the floor: my wig-fitting haircut

I was born with long curls. I had long, long ringlets at six. In Grade 6, my hair was to my waist. Except for one brief moment of weirdness when someone got me a pixie cut when I was seven, and brought tears to my Dad’s eyes, I have had thick, shiny hair that went from shoulder to mid-back, to jawline, to waist, always long. But, I hasten to make clear, I wasn’t “all about the hair.” I own neither a curling iron, nor straightener. I don’t own a hair dryer. Wash, finger-comb, let nature dry it. If I had lots of energy, I might braid it wet to get waves the next day. Most of the time it was twisted up and back using a sharp pencil, chopstick or clip. Maybe a rubber band. But I love my hair.

My daughter Tessa is much the same way, although she uses a brush and goes for sleek, and can do the most amazing ’40s Victory Rolls do for military balls. Here we are, side by side, each of us 18 at the time. Check the hair.

Me on the left, at 18; Tessa at right, 18 too. Hair is good!

 

I wrote earlier on this blog that on October 21, 2013, Tessa and I took the plunge to lop off our almost-waist-length hair and donate it to Locks of Love, a charity that makes wigs for kids with cancer and other illnesses. My longtime friend and hairstylist extraordinaire, Laura, who works at Distinct Hair Design on Maitland, did it. I loved my new style, and Tessa, hers.

Tessa and I on the day of my pre-going-bald wig-fitting haircut.

But chemo for TNBC (triple negative breast cancer) is aggressive, and my oncologist said I would be bald as a billiard ball by the third treatment, which was four weeks away. I contacted Laura, and she said she would come out to the house to do it. She’d bring Liam, her 6-year-old who loves cats and dogs and crafts and video games (we can keep a kid like that busy for 10 years!), and we’d have a few drinks and get through it, tears or laughs or whatever would come. Tessa was the official before and after photographer.

 

The last photo with my longish hair, with my stand-up friend Laura, the one who wields the shears!

And then this:

 

 

One of the many advantages of Laura doing me the huge favour of coming out to my house is there is no mirror in my kitchen. I couldn’t see what was happening, except on the floor, where piles and piles of hair were amassing. With LEGO Batman Xbox, dog, kids, Tessa and Laura and me talking up a storm, she was finished before I knew it. I went upstairs, trailed by Tessa, who knew of course I would cry as soon as I looked at myself in the bathroom, and wanted to be there for a big hug and comforting.

     I looked in the mirror. I cried. I didn’t recognize myself. I looked like someone who chewed a stick instead of a toothpick after cooking’ up the deer she shot that afternoon. NOT ME! It’s like some people said—the process of losing your hair is the most traumatic thing. I never would have believed it—it’s a side effect in the big push, it’s temporary, it grows back. Doesn’t matter. I still don’t look like me.

      And I can’t find a single pic of me, despite Tessa’s incredible skill with the camera, that I can post here. But when there is one, I will post. Promise.

 

My workplace sends a gift!

When Luka came home from school yesterday, he carried in a huge box (he has a backpack: I do not send him to school with his stuff in a box). It was a plain brown box, making me wonder instantly if someone at this address had ordered something dirty super-private and too big for a padded envelope. Cool!

It turned out to be far more thoughtful and useful than that stupid blow-up Ron Burgundy doll—a gift basket from my office!!!

(While I am playing catch-up to present day with the C ride, doing backfill with content, I’ve been saving the little medical updates that I’m not convinced friends and family actually want to know about. If you don’t want to know, skip this italic section. Even I cannot believe that I already have mouthsores from the chemo—feels like the knife-in-the-throat sensation of untreated strep throat, only over the surface of the inside of my mouth, making toast, bread, crackers, cooked edges of meat, fish, roasted vegetables, rice, blah, blah, blah, torture to eat. I’m doing the warm salt rinses and will move to prescription rinse today, BUT the fact some genius at the office actually chose soup as the theme of this basket is either all-knowing, prescient or very, very lucky.)

Now that the photo is taken, I will dismantle and post a “haul video,” usually teenage to twenty something girls ripping open bags from Victoria’s Secret or H&M or MAC or Forever 21 to inventory their goodies, go to to YouTube, there are thousands. Mine will be a look at the gift basket under the cellophane. And until I can figure out how to bluetooth a video off my phone, you will have to wait in suspense to see the contents of my basket and my in-between pixie cut.

Thank you very, very much to all my friends and colleagues at CAMH, supportive as I discovered this crappy situation, and from e-mails and this gift, supportive still! Thank you, thank you.

A soup-themed gift basket custom-made for someone with mouth sores: how could they have known???