Chemo N°4

My bloodwork review with my oncologist takes place the day before chemo day. I pop down to the lab, get my blood drawn from my port now, not my arm, and the results are ready within the hour so my doc can say yes, chemo is on! My blood was underperforming on June 17, and she explained to me that my levels were dipping below the levels liked for chemo.

Alarm bells! I want that poison, and I want it on time, every three weeks. She studied my results more, and came back with a trick, to reduce one of the components, paclitaxel (Taxol) by 10%, and then chemo would run as scheduled the next day. Sounded good to me.

Yes, this is me wearing my fave chemo shirt. That day in particular I was having hair, or complete lack thereof, issues, so no head. Very juvenile, I know, but hey, if this crap sandwich isn’t enough of an excuse to be juvenile once in a while, what is?

Chemo N°4 went off without a hitch, 10% lighter on the one component, 6.5 hours, Patty came up from Stratford to drive me there and back—she has been my rock for these chemo days—and then it’s wait for the side effects. Wearing my terribly apropos shirt, of course…

How am I physically?

I know a post ago I said that I was going to try writing more often and see if that helps with my outlook, and it’s been a slow start (better than a no start, I tell the dog). So tonight I’m going to give my state of the physical address.

My right hand with lymphedema, in need of major massage to force all that fluid back up my arm, over and across the right shoulder and down into the neck area where lots of lymph nodes are hanging out, looking for work, I hope.

When my hand is like this, it hurts a lot!

So, how am I physically?

I am managing my hand, arm and trunk lymphedema with twice daily self-massage. Graydon and Tessa each came to an instructional session at Princess Margaret’s Survivorship Program for the decongestive massage and filmed it each time. Pam was the therapist both times, and she was amazingly patient and accommodating about filming. I have found that it really helps to have the video when I do the massage myself, both for pacing and remembering to do all the parts of the massage routine. I am taking a second session of Lebed Method Healthy Steps exercise classes at Toronto General Hospital, designed for opening up and promoting lymphatic drainage through the whole body, which I need to keep the swelling down in my right fingers, hand, arm and trunk, and reroute that fluid to other lymph nodes. I try to do a modified (shortened) version every day at home—the days I do it I feel better in the arm and chest. I need to do aerobic exercise, but am having a hard time keeping that up five times a week.

The fatigue continues, and is the most frustrating thing I face on a daily basis. I didn’t “believe” in fatigue before, now I believe it but I hate it. Fatigue usually lifts a few months after radiation, but I’m five months out from radiation and still bagged. After seeing my psychiatrist last week, and running two more errands, I slept from 4 p.m. to 10 a.m. the next day. 18 hours. On days I have to get out and do stuff, I need to drink a large coffee every hour or so until I am done, then it’s water. If I don’t drink coffee, by 10:30 or 11 a.m., whether I have exercised or not, I need to sleep. That sleep can be two hours or six, and if there isn’t a huge reason to get up, I can nap all evening and then sleep all night, punctuated by my mind waking up to rattle through bad thoughts for 10 minutes or two hours. If I can will myself back to sleep, great. If not, I lie there with a body that can’t get up.

I have breast surgery coming up. The right side has continued to shrink thanks to the radiation, the gift that keeps on giving. The plastic surgeon left my right breast a fair bit larger than the left after my surgery, because radiation hardens and shrinks the breast tissue. That way, depending on the shrinkage, the two breasts might end up close in size. No luck in my case. They are now at least two cup sizes different, which means no bra can possibly fit. And the difference is definitely noticeable by more people than just me. I have thought about going with a prosthesis, but there are enough other things that need to be fixed and rejigged that surgery is planned. I’ve had the surgical consult, reviewed expectations, procedures, recovery. Now I wait for an appointment to sign my consent papers, and then I’ll be scheduled. I don’t want surgery, but this damned cancer has screwed me over enough already, I don’t need to see more evidence of it every time I look at myself.

Miscellaneous items: My hair is coming in like I always thought it would if it was ever short—curly at first, now wavy, just as thick as before, texture still silky. So, except for the natural dirty, dirty dishwater blond colour, it’s not so bad. I still want my long, blond highlighted coif, so I am not trimming it in any way—just keep it growing! My right breast hurts all the time inside. On the outside, there is no sensation, and I still have no sensation under my arm and around to the back. That makes the massage feel really freaky—my left hand knows what it’s doing, but my right arm can’t report back. Weird. My toe nails are not growing back. This will start panicking me soon, because I go barefoot from May to October, and those toes look like photos in a medical journal. I can’t even paint them, because there are no nails! Fingernails are much better, as in I have nails on all ten digits, but they don’t adhere to the nail bed very well yet, so lift up a lot, have bubbles and ridges in the nails themselves, and peel and split a lot. But, I can paint them, so it’s OK.

 

Triple negative celeb cover: Joan Lunden on People

Even before the October pinkwashing began, our latest celebrity triple negative breast cancer patient was spreading her personal battle with TNBC on every newsstand with her People magazine cover. I was already dipping out of going to WalMart, Targé and malls of any kind (I’m completely creeped out by all the breast cancer pink on everything) when this appeared:

It’s a far cry from this crazy hair day cover:

I was all over Joan Lunden’s story in June when she revealed that she had been diagnosed with triple negative breast cancer. With only 15 to 20 per cent of women with breast cancer being diagnosed with triple negative, and with all the articles and stories and reports saying the prognosis for TNBC is poor, I latched on to her story. I checked her website, read her blog, etc. This cover was about her not waiting for her hair to fall out, but shaving her head. Yuk. I did that too. Either way, we were both still bald., and I still hate how I look.

But Joan was out and about all October, appearing with the WWE, Susan G. Komen, on the Today Show as a guest host for the first week of October (video of her and hundreds of breast cancer patients/survivors/warriors), so triple negative is getting some press, finally.

It’s hard to be vain when you look like this: Another post devoted to my hair

Finally, enough hair to show up in a photo!

I finished my chemotherapy on April 8 with four rounds of Paclitaxel. I took this photo last night, June 26, and there’s enough to show up on a photo! My onc said that many women actually shave their heads for a while when their hair starts to grow back because it comes in unevenly or patchy. I intended to shave mine too, particularly when I gave Luka permission to shave out a Bat-Signal centred on the back of my head, maybe like this one:

Unfortunately, Luka and I were too ambitious, because you actually need a decent growth to do a fade like this. Mine was a washout. The good thing was, even though Luka cut loose with the shaver, after a few weeks you could barely see the shape, so I plunged ahead and did not do an all-over shave.

Now I just have to wait, and wait, and wait…

 

To eyebrow, or not to eyebrow?

Way back in February Tessa and I attended a Look Good, Feel Better seminar. I was pretty successful at getting my skin cleansed and toned and moisturized and made-up, all except for the eyebrows. From that day:

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.

So, here I am, parked outside of a hospital, with barely any eyebrows left, but what I thought were artfully feathery-pencilled-in fauxbrows. When I checked in the mirror for a last look before exiting the car, the right one didn’t look so good. I tried adding a bit more, and the curse was cast. A little more was too much, so I had to add a bit more to the left side. That proved to be too much, so I wiped it all off. I drew the dots, filled them in and it looked like I was trying to channel Jean Harlow from Bombshell. I supply a poster image:

I scrubbed off both fauxbrows to start all over. By the time I thought I was happy with the right side and started the left again, I saw Jean staring back at me. I wiped off the left side once more, then took this picture, hoping to get a more objective look from a photo than from my visor mirror. I did. It was a disaster! I removed both sides, fluffed the bangs from my wig well over my forehead and into my eyes and vowed not to attempt eyebrows again, but wait for them to grow back.

They’re starting! And I have peach fuzz, and some horrible little eyelashes, but anything will be better than the lizard/alien eyes I have had for the last two months or so. Yay!

 

Bye bye eyebrows: Look Good, Feel Better brush-up needed, fast!

 

She has a strong face, and can carry this off. I cannot. I’ll be looking for a lighter presentation. Thank you to http://affordablebeautiful.blogspot.ca/2012/12/how-i-do-my-eyebrows.html

Back on Feb 1 or 2, when I first warily then enthusiastically attended a Look Good, Feel Better seminar at Princess Margaret Hospital, I had full eyebrows. I don’t pluck them, because I am a-scared of the pain and a-scared of the responsibility of making them the same on each side, seeing a “Oh, a little more off here. No, now wait, then three more from this side. Now that looks odd. Maybe a few from under this side…” scenario, so I never went there. I’ve had my eyebrows tweezed once by Paul Venoit (a god in makeup artistry) and twice by a lovely Scandinavian woman on Bloor Street, and that’s it. I’ve always let Nature take its course, but now cancer is taking its course, and it isn’t pretty.

 

If I had these brows, it would be Botox next to keep my forehead in line! Thank you Alphablonde, but I need a less incredulous look: http://www.lovelyish.com/2009/09/09/how-to-cover-your-eyebrows-and-draw-on-dramatic-ones/

Brows were covered in the Look Better, Feel Better seminar. It had to do with lining up the corner of your eye with where your brow should start, then establishing another sight line to do the arch, etc. At the seminar, and I now quote myself from the February 2 post: “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.”

 

Then I thought this decent-looking young guy might have the answer—eyebrows with a message. I counted out the letters of my message, and I’ll have 10 letters and 10 letters—perfectly symmetrical.. Right eye: CHEMO STOLE Left eye: MY EYEBROWS.
Thank you to http://gothorsomething.blogspot.ca/2013/11/crazy-eyebrows.html for the idea!

Well, that time has come. I now really look like a chemo patient, with blond eyebrows in the first place, and now not too many of them left.

 

Now, these are the brows I’m shooting for nothing shocking, nothing too wild, just beautiful. Thank you Zinnia at http://www.stylecraze.com/articles/how-to-get-perfect-arched-eyebrows/

Graydon’s girlfriend has a girlfriend who is a professional makeup artist, and she is doing makeovers at a Shoppers Drug Mart, so maybe, if I have the energy, we’ll head on over and I will get some eyebrows added… I might take a couple of fine Sharpies from Curry’s the art store, in my shade, and see if I can talk her into that. Then I won’t have to recreate them for a while…

 

Bald me

Graydon and I were coming back from an appointment Monday morning when we decided to use our Timmy’s rims to get coffees (large latte, yay!). I had taken my cap off while driving, and because we’d been at a meeting, I had used some of my “Look good, feel better” mad makeup skills and looked more presentable than usual. We were discussing my eyebrows and how I know they have thinned considerably, Graydon saying they haven’t thinned, and that all of us have weird eyebrows, when I pulled up to the window.

The woman there looked at me and said, “I love your look!” My look. Waaa? I do not have a look. I touched my hair, oops, no hair! and realized what she meant. No hat, I’m bald. “Ha! Really? I was just saying to my son, I think my eyebrows are falling out too.” “Falling out?,” she asks? “Oh, I’m sorry, I’m on chemotherapy—my hair came out.” “Oh my, I see, well I love your look! You are beautiful! You don’t need hair, girl!” I laughed, said thank you, she said again I was beautiful, and that I was laughing and must be beautiful inside too, and I should love and love every day because every day was a gift.

All of this at a Tim’s drive through.

I thanked her for the kind words, told her she was beautiful, and off we went.

In honour of her, here’s a second bald photo, finally. Can’t say I love it, but at least I can accept it now.

 

Guest blogger: Tessa

Seriously, how does my mom rock being bald like this? I think that before she started chemo we were just scared. We didn’t know how she would be and of course we assumed the worst because with cancer everything seems to be the worst. So we imagined how bad it could get, how different she would look, how we would totally lose the mom we were used to… But now that she’s almost finished chemo she’s still mom. Look at her, she’s gorgeous. Yes, she was sleepy but not every day. She felt sick, her hands and feet were awful and red burning and uncomfortable, and it was bad, but not the worst. I guess most things in life are luck-of-the-draw. We got unlucky with cancer but we could have had it way worse, and a lot of people do. I know that a big part of why cancer seems so much less scary now is because of how strong my mom is. Everyone says it but I don’t think a lot of people understand that strong isn’t having something bad happen and saying “it’ll all be good”. It’s waking up at three in the morning when your daughter sleepwalks to invite her to sleep in your bed in case she ends up sleeping through her alarm the next day. It’s making dinner, it’s telling your kids that you will really be okay and live til you’re eighty, and it’s taking off your hat in the movie theatre when you have no hair, because it doesn’t matter.

If I had any other mother I wouldn’t get out of bed in the morning, but her strength is contagious. It’s there every day, just look at her.

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.

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?