Between fourth and fifth chemos

Things have been pretty low the last week, or rather, I have been pretty low. The first week after chemo, I lie low, which this week was spent baking and decorating my fancy cookies for Valentine’s Day for Luka’s Grade 8 class.

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I could see signs of what they call chemobrain in my making of the cookies—funny, because I thought chemobrain was going show up in my writing (one of the many reasons I decided to keep this blog). But in the kitchen, making the cookies I have made anywhere from three to six times a year just for the family, not counting wedding, anniversary, party and commercial orders, I screwed up over and over again. I burned two full trays of cookies (I have NEVER burned two trays in one baking session, ever), made the icing in the wrong order, ran out of red colouring paste, and made more must-eat cookies with poor planning/execution of icing. The poor planning was Icing 101 mistakes—letting icing sit until too set to do wet-on-wet techniques, forgetting what I was actually intending to do with certain designs, and crummy execution—I blamed that on the burning hand-foot syndrome and the fact that holding the icing bags and exerting uniform pressure was difficult. Anyway, making the cookies took far longer than it ever had, but I planned for that by spreading the work over more nights.

On Friday the 14th, I send Luka off to school with his 25 cookies with all his classmates’ names on them, plus bagged cookies for his teachers and his bus driver, and I bagged up and boxed up cookies (that took far longer than it ever has before too—I actually had to write who and how many cookies so I could stop counting and recounting) for my favourite group of people—my coworkers and colleagues at CAMH, and went in with all three kids at 4:30 on the Friday of a long weekend. What seemed poorly timed was actually well-timed, since there wasn’t a full office the visits were easier, and people were very relaxed since it was a long weekend coming up, and I of course had applied my makeup skills from Look Good, Feel Better and donned my utterly fabulous wig, so I looked barely the cancer victim.

The second week knocked me flat. Part of that was my fault, because I had to make a trip to Stratford to take my dad to medical testing and an appointment in London, and did the 450 km within 24 hours. The following day, I had volunteered to work the pizza lunch at Luka’s school, because by the Wednesday of the second week of my chemo schedule I’m usually feeling pretty good. I was feeling good, so I went, and met some really nice parent volunteers, then came home and paid for my activities with a real bout of fatigue.

For the next four days, all I did was sleep and cough and stumble about the house. If I sat for any length of time, I feel asleep. If I stayed standing, I was OK. Problem was, I couldn’t stand for too long. My feet were still burning, despite pills and cream, and my fingers and thumbs had started blistering and peeling, and I was miserable and hurting. Since I couldn’t stand a lot, I sat, and when I sat my head would loll to one side or the other or even back, and I was asleep. Add in hideous dreams and waking myself by screaming out (and terrifying Luka, who is nearby all the time), and it was a bad Wednesday to Sunday, with the exception of birthday lunch for my tireless father-in-law, or ex-father-in-law, which seems ridiculous since my in-laws have remained steadfastly in-laws despite the breakup of their son’s and my marriage nine years ago. That lunch was wonderful, and thank God at a buffet so I could test out my mouth sores on teeny samples of many dishes and figure out what I could actually eat without pain. Brilliant idea. And yes, I ate well!

Suffice it to say, I am glad that was my last of those two chemo drugs because another of the same cocktail would lead to even more intense side effects, and I don’t need that!

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Valentine’s Day cookies

Luka’s friends in Grade 8 have been asking him since Halloween for our fancy cookies, which I missed making at Halloween and Christmas because of lack of interest and concentration on my part for making my beautiful cookies (damn that cancer). Those cookies have been a tradition for my three kids to bring to their classmates for special occasions for 17 years now, and it was very important for me to get my baking act together and make these. One of the girls in his class still has a photo of her cookie from last year on her phone, and made Luka promise that the cookies this year will have each student’s name on them just like last year.
So, without further ado:
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Fourth chemo

Farewell doxorubicin, red devil, red death, I am done with you!

Farewell doxorubicin, red devil, red death, I am done with you!

Wow, the chemotherapy portion of my treatment is half over!

Yesterday I got the last of my doxorubicin-cyclophosphamide cocktail, in the Power Port, which worked like a charm, thank God. It still freaks me out to see something sticking out under my skin over my heart, but the nurse doing the push of the two fat syringes of deep red doxorubicin told me how happy she was the port was working because if the stuff she was slowly injecting into the port, that the previous three times was just injected into the IV in my hand or arm, had leaked into my vein, it would have been a major incident, serious damage to the flesh, plastics would be called. So we are very happy the port worked. It wasn’t until now that I found out doxo’s nicknames: the red devil, or the red death. Hmmm, and that, aside from the side effects I have discovered as they happen,  late effects include leukaemia and heart failure. Yuck. That’s why it’s a good thing not to research this stuff. Just plow ahead.

Doctor Brezden was thrilled that she could barely find my lymph nodes this time. She was actually excited. I felt like a wet blanket because I wanted to talk about post chemo, surgery, mastectomy or no, lumpectomy (pretty hard when there’s no primary site in the first place) or no. I had to wind it back and try to enjoy the good news that my cancer is melting away.

The bad news? I put on four pounds in two weeks! What the hell? I was looking forward to incidental weight loss with this cancer deal.

The next four chemos are paclitaxel, or Taxol, and we discussed the pre-medication I’ll be doing—yay! More steroids! Side effects are much the same, only more and more intense. Neuropathy is expected, or should I say dreaded? I don’t know how that’ll mix it up with the hand-foot syndrome, or maybe it’ll bow out in favour of the neuropathy.  We’ll have to see.

Palmar-Plantar erythrodysesthesia: A new side effect

Last week has been the first time I’ve really felt like I am seriously physically sick with something. Feeling artificial and filled up with drugs is yucky, but I can still make meals, wash dishes, drive the car, do groceries.

Monday morning when I got up at 4 a.m. (which I do every night because that’s when the 12-hour antitussive I’m taking seems to give up the ghost and I erupt in spasms of coughing) my feet felt like they were on fire when I stood up. My fingers hurt like hell. All I could think was that I spent far too many hours standing at the sink washing dishes on Sunday. I went to St. Mike’s for the port procedure, using moisturizer on my hands every time I got a chance. I ended Monday with painkillers for the incision, so my fingers and foot pain weren’t top of mind. Tuesday morning, more pain on the soles of my feet: every step hurt. My fingers felt like they were on fire. I put heavy-duty cream on my feet and covered up with “spa socks” I’d got from my brother last year for Christmas, and never knew what to do with. Then another layer of sock, then knit slippers. My hands I tried cream on, but everything made them burn more.

I couldn’t wash dishes because warm water burned, even inside rubber gloves. I couldn’t do up zips or buttons, carry things, every footfall was painful. I lasted until Wednesday, when I called my oncologist and was told to come to clinic Thursday to see her. Tuesday, Wednesday and Thursday my thumbs and all fingers but my baby fingers looked like mini Oktoberfest sausages after frying and before forking to let out the fat and steam. I cannot describe the hurt. Shoving them into snow made them feel better, but, duh, that’s not exactly very smart.

Was this neuropathy? No, she didn’t think so. It’s likely hand-foot syndrome, or Palmar-Plantar erythrodysthesia, a side effect of one of my chemo drugs—doxorubicin. I’m taking this from http://www.cancer.net, rather than re-word it: “Hand-foot syndrome occurs when chemotherapy affects the growth of skin cells or capillaries (small blood vessels) in the hands and feet. Once the chemotherapy is out of the blood vessels, it damages the surrounding tissues. This can cause symptoms of hand-foot syndrome that range from redness and swelling to difficulty when walking.”

Here are two good links if you want to read more:

http://www.cancer.net/navigating-cancer-care/side-effects/hand-foot-syndrome-or-palmar-plantar-erythrodysesthesia

 http://dermnetnz.org/reactions/hand-foot-syndrome.html

Dr. Brezden was very sympathetic, and gave me cream and an over-the-counter recommendation for benylin, four times a day, to see if that would help. Within  six hours, it started working. Twenty-four hours later the swelling was down, the pain was completely tolerable, and I could put cream on my hands and feet without making it feel worse. So I am home-free now until Day 7 after the fourth chemo, or Feb. 17. Yay!

Power Port v. 2; or, another fun day at St. Mike’s

Cast back a week to my third chemo, and how my newly placed portacath was going to make launching IVs and digging for  blood return a thing of the past. Recall how it didn’t work, and how three nurses tried unsuccessfully to get the damn thing to work.
     In the notes of the procedure, apparently there was a kink in the line, but those kinks usually work themselves out. In my case, of course, it didn’t straighten out, it became useless.
     Today I went in to have it fixed. When radiology called me late Friday afternoon they said “You’re getting a port inserted.” I said no, I already have one. They said, “Then you’re having it removed.” I said no, I need it for chemo. I think it needs a repair. “Oh well, then that must be what we’re doing.”
     I was filled with confidence.
     I told radiology I could not go through that surgery without more and stronger meds. She said, tell them as soon as you’re in. I then called my cancer navigator and asked her to look up my meds from my gastro consult on Dec. 24, which she did.
     While unable to sleep last night (lack of sleep is a recurrent, or chronic, problem with me since before chemo began), I researched portacath insertion meds and made notes. I printed out where someone could find the consult notes in my ER, and what the dose was that I think I need.
     I was at the hospital for the entire day. I advocated for better sedation with two doctors and a nurse. It worked. I got two meds instead of one. I felt a deep calm. My legs were not twitching, my mind was not racing. The doc did his thing, straightened out the catheter wire, got blood return, and pronounced the procedure a success. I slept in recovery for almost three hours. It was like Heaven.
     Then phone calls started coming in—the brakes on my man’s car failed and he shot across six lanes of traffic before picking the biggest snowbank he could see and plowing into it. He extremely shaken, but wasn’t hurt, but he also wasn’t driving me home as we had planned. Tessa had to leave the hospital early today to meet Luka for an appointment at SickKids, but I needed to get my car out of the parking lot. Tessa and Luka came back down to St. Mike’s, and five hours after the procedure I got behind the wheel. I thought that was preferable to having Tessa drive me home (hahahaha! no license). Ten minutes after starting the drive home, the freezing fell out of my chest, and I had no pain pills. Nice…
But there was a surprise at home! A padded envelope from friend and co-worker Annie. She is a knitter, and not a keep-me-hands-busy knitter,, but a committed I-can-make-any-sweater-sock-puppet-hat knitter. Last Friday she sent me a handknit alpaca cap in khaki. Today, it was a seafoan green toque, soft and warm with a very cool button on it. Now that I am entirely bald, and the temps are -18, these toques are not just accessories, they are necessities. Thank you, Annie!

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

thank yuNow, 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.

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.

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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!

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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?

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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.

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Yes, these teas are as delicious as they look…

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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.

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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.

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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!

Look good… feel better

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Wednesday morning Tessa and I arrived at Princess Margaret Hospital’s wig shop for a Look Good… Feel Better seminar. My cancer care navigator at St. Mike’s told me to go to one, the chemo nurses did too. I’d heard about the seminars ages before, saw special sections in the women’s mags about what a great endeavour it was. I understand the logic behind it, in fact, it echoes one of my favourite sayings about dealing with mental health issues—fake it until you make it. If you go through the motions, eventually you will habituate. If you look good, people will see you as healthier, if they see you as healthy, they’ll treat you as healthy, and then you’ll feel more normal and more like the old you.

     Or, like the devil’s advocate in me thinks, You have cancer, you feel like shit, how in God’s name can anyone expect you to cleanse, tone, serum, moisturize, prime, powder, paint, and on and on so you’ll look like a painted doll who still feels like shit?

     Spurred on by the promise of a kit of free potions, lotions and war paint, though, we walked on in. The Look Good Feel Better seminars are sponsored by the Canadian Cosmetic, Toiletry and Fragrance Association (CCTFA) Foundation, formed in 1992, and the seminar leaders and assistants are all volunteers from the cosmetics industry. There were eight of us around the table, each set up with a tabletop mirror, makeup sponges and disposable brushes, and a big pink box. The volunteers opened the boxes and pulled out the contents, very adeptly slicing open packages with box cutters and laying everything out in front of us.

     We all wore name tags. Tessa had to sit at the back of the room (I was very disappointed—I wanted my daughter right there, since she is a pro at makeup, and I haven’t been truly bothered to do real makeup for years and years. I didn’t want to be discovered as a lipbrush-wielding fraud).

     But, like a kid with a tray of fingerpaints in front of her, it didn’t take me long to muck in. The woman leading the seminar was genuine and funny, and she walked us through all the steps of a complete cleansing and makeup, with hands-on instruction and the help of the other volunteers for anyone who asked. I did well until the eyebrows. I have always let nature take its course with my eyebrows (except for two incidents with professionals, one of whom was Paul Venoit, internationally known Canadian makeup artist [why? because he was doing a huge campaign for Rimmel, and I was lucky enough to be in consumer mags at the time, so got a makeover by a real pro]). After putting the eyebrow pencil dots at the right co-ordinates, using the inside of my eye and the outside of the iris to line it all up, the seminar leader came over and told me I had lovely eyebrows and we had to get rid of the dots. But what do I do when the eyebrows go the way of the rest of the hair on my head? Then I’ll be making strategic dots and filling in the rest. Ugh.

     After an hour and three-quarters, we all looked great. A bit bright for before noon on a Wednesday, but we definitely were a more polished and smiling group of women. There was camaraderie around the table, and conversations as we packed up our boxes and exited the room.

     My only regret? Not remembering to take a photo of the looking good, feeling better me! That’ll have to come later.