First day out of bandages in 8 1/2 weeks

Not my hands on the keyboard, but a pic from 3M showing the coban bandaging I have been in lately

Not my hands on the keyboard, but a pic from 3M showing the coban bandaging I have been in lately

Aaaaahhhhhhhh. After self-bandaging from July 28 twice a day, every day and every night, and the new therapist-applied coban bandaging, today is the first day I have been able to return to a compression sleeve. I can bend my arm! Touch the side of my face and neck with my right hand! Eat with a fork in my right hand and not lose half the food!

The reason why I’m back in a compression sleeve is because my skin is degrading under the coban bandages so I need to wear something breathable while I apply Polysporin and clean the areas and keep them from getting infected. As soon as the skin heals, or starts to, I’ll be back in the bandages (which ones I don’t know yet).

For this period of CDT (complete decongestive therapy) I have seen three different therapists—an osteopath, a massage therapist (Lucy) and a physiotherapist (Lisa). Lucy and Lisa both practice at Toronto Physiotherapy, the first place I went with my lymphedema after diagnosis and an assessment at Princess Margaret’s Lymphedema Clinic.  My first therapist at Toronto Physiotherapy, last fall, was Lindsay (weirdly alliterative, yes?), the director there. I have had six professional drainage massages since this flare-up began, and blown my health coverage reimbursement for the year. Now I’ll have to cut into my spa budget or wine-cellar allowance to pay for massages (I wish!).

The difference in my arm between what I can do and what a trained therapist can do is night and day. They do 135 hours of training for certification in lymphatic drainage massage; I received 80 minutes. It is ridiculous that this condition doesn’t qualify for OHIP-covered services. My one-handed effort at this type of massage is ludicrous. I’ve been doing it for 10 months, and I don’t think I’m going to get any better at it. I talk to my therapists, question them, get my kids to videotape the sessions, watch every YouTube video on lymphatic massage, and still, my left hand reaching across my body is a poor substitute for a trained therapist.

Complain, complain.

The sleeve I’m in today allows my skin to breathe so the degradation will stop. But as that happens, I can almost feel my arm filling back up with this gross fluid. It’s one of those “damned if you do, damned if you don’t” situations—in the bandages I can exercise my arm and hand and force the fluid up the arm, but my skin gets gross and blistered and red; let the skin heal and my arm swells back up. It sucks.

Complain, complain, again.

But right now I can bring a spoon up to my face and eat with my right hand, brush my teeth with my right hand, and I actually attempted eye liner today. So I am enjoying myself!

 

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Pathology appointment in less than 24 hours

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You guys better be finding no cancer in those lymph nodes!!!

Like it says in my very imaginative and teasing title, tomorrow is pathology report day. I am experiencing an abnormally high level of anxiety over this. To be honest, I am going freaking crazy. Swooping from “I am going to beat this!” to “I am going to die.” I have resisted the urge to troll for any more journal articles after the last one that outlined the time between distant metastases and death for triple negative patients. I feel like I am wallowing in my misfortune, and then I think, “misfortune?” It’s my freaking life that’s being threatened!!

This is a useless post. I have slept and rested (depressed) for days, and now I feel like I have to do a million things. Laundry for Luka’s class trip (leaves tomorrow), strategizing contents of garage in the wake of the Yard Sale for the Cure that Tessa and my sister Heidi held the day after I came home from my surgery, organizing my room (forget it), replying to emails, getting the lawn mower blades sharpened (if I wasn’t so torqued I would never have agreed to the usurious $40 the sharpener man charged), blabbing to my neighbour Tracy all kinds of stuff (she is very nice and patient), and more. I have not taken any ativan today, and I don’t even know why. Maybe the same reason I didn’t demand more pain killers post-surgery when mine ran out? Suffer, girl, suffer?

I am taking ativan now and will try to peace out. Please cross your fingers.

My tongue is no longer wrapped in Vaseline!

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Here is a rant I’ve been meaning to have, but haven’t because it seems very petty in light of cancer and chemo and blisters and pain. I had mouth sores that killed, and moved out to the corners of my mouth, which was both painful and pretty, and I did complain about them.

The most annoying, disappointing and frustrating side effect of my chemos has been the fact that I cannot taste anything. That is apart from foods tasting too spicy and hot when in reality they weren’t hot at all according to everyone else at the table. When food didn’t taste too hot, it tasted like my mouth and tongue were covered in Vaseline. Like no flavour could get through, no matter how good it smelled, or looked, or even when I made it myself, and seasoned it just right just like I would always season it—it tasted like NOTHING. And I behaved like Einstein’s definition of insanity: “doing the same thing over and over again and expecting different results.” I made my special spareribs with secret molasses orange sauce, roasted garlic mashed Yukon potatoes,  roasted marinated peppers, even my beautiful cookies, and nothing tasted like it was supposed to. Nothing tasted like anything!

But now, after another rollicking week of not being able to taste anything the way it is supposed to be tasted, I had THE FIRST THING THAT TASTED NORMAL SINCE THE BEGINNING OF JANUARY!!!

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!st prize for a food tasting like what it is supposed to taste like goes to half a toasted everything bagel with Philadelphia herb and garlic cream cheese!

Now of course I’m not going to eat anything for hours in hours, in case this was a fluke. I want to luxuriate in a taste that tastes the way it is supposed to taste!

I am made of poison

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So this is the shirt design that I wish I could order from TopatoCo, but apparently it was a circa 2007 T-shirt, so I am out of luck.

It is the shirt I would have worn today, when I had to peel back my Annie-made toque to show the manager at the Goodwill shop (Graydon is shopping for picture frames to showcase his artwork and others’) that I am on chemo and in dire need of a bathroom, employee or not—it was a desperate move, and I’d rather have flashed a cool T-shirt than a bald head, but my need was great.

She caved, and I made it there with seconds to spare—when they said Taxol doesn’t cause nausea, they did not know me.

Yesterday I got up at 7 a.m., got Luka on the school bus, slept right through to 3:20 p.m. (with coughing, of course, but not getting up) when he got home, then slept three more times before bedtime.

Today, my insides are tortured, my ankles, knees and hips feel like they are made of brittle sponge toffee, both palms, most fingers and soles of both feet are sloughing off skin like I’m an anaconda, I have fresh/dried blood all over the place because the slightest scratch or bump opens up a cut, and my mouth is rejecting everything but water and yogurt. I’m really, really unpleasant on the inside and the outside. Taxol sucks.

How feeling crummy led to feeling grateful…

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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.

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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!

calendula creme pic 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!

Virgin: Really? A girl in a tree?

Female with feline capabilities, plus opposable claws!

Hey! My boss has a great post over at  Laggylife’s Blog, so pop over and read it first, then come back. I started a comment for her post, but it got tooooo large, so I migrated it here!

GO! Then come back!

Virgin is a very clever marketer, but as Laggy says, marketing and advertising are all about the bucks for companies such as this, and nothing about social responsibility. I’ll bet the conversation at the table went something like this:

“Uh, doesn’t that make this girl a stalker?”

“Yeah! You wish!”

“She can stalk me anytime.”

“But stalking is a serious thing—look at John Lennon and Rebecca Schaeffer.”

“Rebecca who?”

“Guys stalk, not chicks. A chick who stalks is hot.”

“Yeah, she can stalk me anytime.”

The ads are clever, but kinda sick and scary. Your tongue must be firmly planted in your cheek to enjoy them. The adverts will definitely win awards, and the creative types will wave them around as they endorse the use of “crazy” people and behaviours to sell their shit. I’m sure Virgin’s creative thinks it’s OK because men usually are the stalkers, and women are the stalkees (although there is a fair amount of male-on-male stalking, but there is always a victim), so hey!

“These ads are cool!”

“It’s a blow for women’s rights and feminism!”

“Chicks should thank us!”

There are stats on the Stalking Resource Center, although from ’98, that put the percentage of male stalkers at 87 per cent.

But what dude doesn’t have a fantasy that a hot chick just wants his body so badly she’ll follow him anywhere? Ask Paul Sheldon or maybe Dan Gallagher, Tom Sanders, Dave, or even Michael. Girl-on-boy stalking is fun!

Innovations in Clinical Neuroscience has an excellent article on the subject: These Boots are Made for Stalking: Characteristics of Female Stalkers.

My takeaways from this?

  1. Dating is hell, but it’s even more hellish a hell that before social networking.
  2. Stalking is creepy. Will she boil a bunny next?
  3. I get unlimited text, talk and data for $45 a month from Wind. Duh.

There are too many alternate realities for me

So, thank you Ms Laggy for a jumping-off point this fine sunny Monday noon.You might want to post the addresses and names you got at Virgin—I’ll fire something over, and I do still write long-hand too!

さようなら

sayonara


Monday rant, #5

Taberon Kaiju, Tokidoki Version, is Italian designer Simone Legno’s contribution to the Kaiju For Grown Ups project. My oldest son, Graydon, is fascinated by these. I’ve chosen this one as my rant visual.
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The weekend is over and it’s time to detoxify for the week ahead! My rant this week is all about my car, a 2000 Saturn, a car I have never loved, or really even cared for, and he knew it.

Day 1: the car is running rough when I start it up. Graydon put $10 worth of mystery gas in the night before, mystery because he told me later it could have been diesel. Could it have been? Don’t the nozzles not work when you try to put the wrong gas in? I put in $32 of gold gas, or platinum, or whatever, hoping to reverse the effect of the mystery gas. Halfway to work the car is still rough. I thought, would would my ex have done with the car if this happened? Gun it. So I did, and overshot my exit, and gunned it some more, until I had to get off the highway. When I slowed, it was worse than before, so I hobbled into a Canadian Tire. FOUR AND A QUARTER HOURS LATER, they finally took it into the garage. An hour later, the news: “timing chain, broken, damage in the engine, estimate tomorrow.”

Day 2: $4,500. Cry.

Day 3: rent a car. Talk to brother-in-law Jim, who knows cars. Get one if not two more estimates.

Day 4: estimate might be $3,600, if I’m lucky. HAHAHAHAHA. When I left work at 8, I couldn’t find the key to the rental car. I spent 1.5 hours tramping the building and retracing my steps out to where I went for lunch (of course, I never go out for lunch, but I do on Friday because I will be declaring bankruptcy anyway), 7-11, Tim’s and an adjoining building to my building. No key. Went home in cab. $32.

Day 5: Saturday. Girlfriend with mechanic significant other visit Canadian Tire and examine estimate. He can do it for less. I trust him. They are going through town, and stop at the office garage to see if they can find the key. No dice. I dragged Tessa and Graydon to the office, tore office apart, retraced steps for 2 hours. No key. Had to get towed to dealership to have new key cut. Towing cost: don’t even know yet. Dealership closed. Lot locked. Leave car nearby.

Day 6: no car Sunday.

Day 7: called dealership at 7:30 a.m. Monday. They can’t proceed without OK from rental agency. Speak to rental agency at 7:45. They’ll clear it up an have key cut and call when ready. I called at 11:45 a.m. Rental agency is unable to reach dealership–he left a message. HOLY #%#$%!@^#$&@%^. I get through on the first try. Lloyd, a kindred spirit on the other end of the phone, says he’ll do it. I get over there right quick, he cuts the key, I pay, I have to climb in the passenger side and over the gearshift because I am parked in. I stick the key in and—no engine. Blinky lights. I remove the manual, find the console drawing, see I need immediate servicing. I try to be mindful of my blood pressure. I call the rental agency and I tell them I have reached the end of my rope. They deliver another car. I get to my dentist appointment 15 minutes late to find out yes, I need a crown and a post on that broken tooth. Arrrrrghhhh. Get Saturn towed to my driveway. Order engine (costs less than the repair).

Day 8: work

Day 9: engine arrives. Miracle mechanic starts.

Day 10: mechanic still going. Temperature is not so bad for working outdoors.

Day 11: mechanic is finished! Car goes! Praise be! Write cheque!

Day 12: car back to rental agency.

That’s my Monday rant. Now I can start the week afresh.

Have a rant? Please, feel free to share!