Chemo nails

This post is out of order as far as my treatment goes: my fingernails were at their worst in March and April. They are back to their original state now. My toenails have not fared so well—I lost five of them, and while three of the little ones have entirely grown back, my two big toes are nailless, or rather, half-nailed (my control of the English language is not at its best now either, hmmm). I have a referral to chiropody to check out what’s going on there, but I digress.

I have always loved painting my nails, from Grade 7 on (prior to Grade 7, we had to line up at the back door of St. Aloyisus School, hands held out in front, palms down, so Mother Anacleta Miles could inspect our nails and their nakedness—even a hint of colourless nail polish meant you were sent home). It’s a tiny bit of prettiness, along with wearing rings, that I came to enjoy even more when working on a keyboard all day long (particularly because I never took typing at school, and still have to look at the keyboard to type, which means I really do see my nails a lot).

So when cancer was making me feel like I was out of control of just about everything, and I was spending a lot of time at home, I did my nails. One of the side effects of chemo is damage to nails, both finger and toe. As my nails got uglier to look at, I did then more often. It is even recommended to use colourless polish to keep nails strong. Two of the chemos that do the most damage are Taxol and Doxorubicin, both of which I took. Beau-Reil lines are lines that go across each nail, marking each high dose chemo like the rings of a tree, while koilonychia is the spooning of the nail. They turn yellow, crack, break, even pop or tear right off.

I took pics of my nails on their way to luckiness. I’ve been carrying those photos on my phone, and when I needed to make space on the phone, I found them. Hence, this post. Here goes (check out the middle finger—it was the first nail on each hand to go):

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After four of my eight rounds of chemo, this is what my nails looked like. Yech! But once the chemo drugs cleared out of my system, the nails that I lost grew back, and the ones that just broke and got gross grew out. I still have some lingering neuropathy in three fingertips on my right hand, but that’s it.

The jury is still out on the toenails, though. Fingernails grow three times faster than toenails, but the complete lack of nail growth on the tootsies has me happy that sandal weather is long gone. 😉

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pink, pink, pink, PINK, PINK, PINK, pink, pink, pink

I did not see this, I saw it on xxx blog (vvv), and maybe found the original at http://www.luvimages.com/image/campbells_pink_label_soup_cans-5975.html

I did not see this display in a store—I’ve been avoiding stores like the pink plague this month. I saw it on Stephanie Gilman’s blog Pass Me Another Cupcake blog (http://passmeanothercupcake.com/2014/09/29/one-of-those-days/), and maybe found the original (http://www.luvimages.com/image/campbells_pink_label_soup_cans5975.html).

This photo totally explains why I’ve stayed out of the grocery stores this month. Pink packaging runs amok in October. Pink soup, pink juice, pink milk, pink M&Ms (pink outside package, pink M&Ms inside the bag), pink toilet paper, pink curling irons and blow dryers, pink Kitchen Aid mixers for heaven’s sake!!! Please send me one. And a big bag of those M&Ms.

I’ve been trying to write a posting on October, you know,

 

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But I am so conflicted I can’t really get anything out on paper. Or here either.

I knew October would suck for me. I discovered my lumps last October. I feel as though I have let my pink sistahs down—I never painted a pink ribbon on my nails, or dyed my hair pink before it fell out, or wore pink to chemo days. I don’t have a magnetic pink ribbon on my car, or one hanging from my rearview mirror. I don’t call myself a cancer warrior, and I haven’t signed up for a cancer run or walk. I discussed with my psychiatrist (new experience for me, an actual real psychiatrist just for me) how I haven’t gone to any group sessions, have done no bonding with any other breast cancer women, or men for that matter.

What I have found is some excellent writing by other bloggers who have breast cancer, and over the rest of this month I will be reposting some of their posts.

As for me and the avoidance of stores this month? I have Thanksgiving dinner dishes to prepare, and there is not enough in the fridge to cobble anything together, save a pearl onion, olive, anchovy, pickle and fish sauce stew, and I don’t think there’ll be any takers for THAT one!

So it’s off to the shops later today. Maybe I’ll wear my wig. And I won’t be wearing pink.

MRI reveals adrenal adenoma: NO BIG DEAL!!!

What the CT scan showed, and the MRI detailed, was simply an adrenal adenoma, a noncancerous tumour.

YAY!!!

Join me and Spidey in a dance of cancer freedom!

Yes, this is what I did once I got out on Queen Street in front of St. Mike's. I was ecstatic! I love this gif, thanks to http://gifvault.com/dancing-gif-111.html/dancing-gif-111

Yes, this is what I did once I got out on Queen Street in front of St. Mike’s. I was ecstatic! I love this gif, thanks to http://gifvault.com/dancing-gif-111.html/dancing-gif-111

I have spent so much time and energy convincing myself and Tessa that I would be told I needed a biopsy this afternoon that when Dr. Brezden told me I was clear and could now go home and celebrate, I didn’t know how to respond. I was in a daze of sorts. I wandered out right past the desk with my blood req in hand and they called me back to set up the next appointment. They thought it was pretty funny that I had forgotten the drill already. They set me right up with a printout of upcoming visits to St. Mike’s: I have a plastic surgery app’t, mammogram, and checkup with my cancer surgeon in November, and see my oncologist on December 18, exactly one year from my sentinel node surgery.

From the hospital I went to my place of work, picked up a fellow editor friend, drove to her house and this happened:

Only when Diana opened the bubbly, she did it like a pro, with a pop and no loss of champagne. Pic from http://www.huffingtonpost.com/richard-jennings/holiday-champagne-buyers_b_4325064.html

Only when Diana opened the bubbly, she did it like a pro, with a pop and no loss of champagne. Pic from http://www.huffingtonpost.com/richard-jennings/holiday-champagne-buyers_b_4325064.html

And then this happened:

Hmmmmm, this was tasty. Made me wish I had a driver so I could have indulged more. This pic courtesy of http://www.matfenhall.com

Hmmmmm, this was tasty. Made me wish I had a driver so I could have indulged more. This pic courtesy of http://www.matfenhall.com

So, this is the confirmation that there is no discernible cancer in my body now, after chemo, surgery and radiation. Thank you to the many doctors and nurses who have taken care of me, and thank you to my family members and friends for their prayers and positive vibes and healing thoughts. It looks like everything worked.

I should sleep very well tonight!

Thank you all ♥

Enjoying cPR

 

Some girls celebrate with a mani-pedi, others with a new pair of shoes—this girl celebrates with silky gravad lax. Image courtesy Donald Russell: http://www.donaldrussell.com/ultimate-gravadlax-salmon-f104.html

Some girls celebrate with a mani-pedi, others with a new pair of shoes—this girl celebrates with silky gravad lax. Image courtesy Donald Russell: http://www.donaldrussell.com/ultimate-gravadlax-salmon-f104.html

 

Feeling just like King Julien

I’m still basking in the glow of my cPR (complete Pathological Response), and trying to spread the love back to everyone who sent their prayers and positive vibes my way through the first six months of this unwelcome side trip in my life. I wanted to do some kind of celebration, maybe a real party, but that would involve all kinds of planning and energy that I don’t have, so after the pathology appointment Tessa, my man and I headed for the St. Lawrence Market. When I was an editor at Toronto Life magazine and later at WHERE, the market was one block away, and I would be there at least twice a week, usually more. I love that place, but since working at CAMH, getting there is a virtual impossibility during the week, and I’m happy to stay out of the downtown on the weekends, so going there was a huge treat. On the list of the celebratory purchases were a full pound of Domenic’s house-cured gravad lax with lemon zest and dill, St. Urbain bagels (Montreal style, baked right there), Jelly Belly’s (my fave), Callebaut milk chocolate chips (not for baking, just for precision portion controlled eating) and other little treats. We ate the gravad lax right from the butcher paper as we were driving home—and there was still plenty left for a vodka toast when we got there (yes, I have read the articles, I had barely a third of an ounce, thank you). We said we would properly celebrate when things return to the new normal anxiety-wise.

 

Shaking off that anxiety angst

I’m working on it, although I haven’t had a chance to really catch up on all the quality sleep I missed while twisting in the how-much-cancer-is-left?? wind. Luka was still on his Ottawa school trip this morning, and I had no appointments to get to, so I planned a good, long lie-in. Unfortunately the message was not relayed to my brain, which pinged awake at 6:40 and would not shut off.

But I didn’t have an endless loop of what-if-it-spread-past-the-original-five-nodes-and-the-chemo-doesn’t-work thoughts. Instead, my mind just wandered around: should we try to visit my dad this Sunday? Will my breasts take a two-hour drive each way? Maybe some tensor bandages and the sports bra together? What would he like for a present? Normal thoughts. What a relief! (I just read that over, and I crack myself up. Asking yourself if your breasts can stand a two-hour drive is a normal thought?)

 

Radiation planning

The morning after the good news appointment I was at Princess Margaret  Hospital for 9:30 to sign consents for radiation. I was in an excellent mood, feeling very positive, on time. I met my second-in-charge radiation oncologist and my radiation tech, of course had to whip off everything above the waist—what else is new? I’m surprised my pharmacist and dentist don’t ask the same thing—and when the doctor started to explain radiation, I asked if it was OK if I recorded our conversation. Either Tessa or my man has accompanied me to particularly info-packed appointments, and if I take notes I have them as a back-up should I forget something. Plus, as treatment goes on, I have found it difficult to actually grasp some concepts, so recording seemed like the best plan. My sisters and I often record doctor visits with our parents so we can share info with the other siblings. But my new doctor said no. I blinked. I explained that I was alone, that I was very anxious (hadn’t been up to this point), that chemobrain was making me stupid, that note-taking was physically laborious and required too much concentration to be able to keep up. She said she would talk veeeeerrryyyyyy sloooowwwwwwllyyyyy, and I lost it. I started shaking and tears literally bounced out of my eyes and down the front of my stupid hospital gown. She handed me a box of tissues and asked if I would like to take a moment. Yes, I’ll have a moment in early 2001, after Luka was born but before Graydon got leukaemia, when Tessa was dancing and my marriage was still intact. That would be nice. I choke-sobbed for a minute or two, then splashed my face and opened the door and took notes I can’t even read.

I will have 25 doses of radiation, five doses a week, to my right breast, axilla, and because my cancer is metastatic, the internal mammary lymph nodes and supraclavicular lymph nodes too. It can’t start until my plastic surgeon, Dr. Musgrave, gives the word that my healing is sufficient. I see her on the 18th, and then radiation mapping on the 26th, and then we see when I start. Radiation should start four to six weeks after surgery, so I should be on track.

 

Dining like a queen

This afternoon the lovely lady from Presidential Gourmet arrived and delivered dinners four and five: rainbow trout and a quinoa and grilled vegetable salad, and a baked pasta with garlic bread. I cannot say thank you enough to the Good Food Fairy who has made it possible to have delicious, healthy dinners five nights in a row—no planning, no grocerying, no prep and virtually no cleanup. It is incredible, and appreciated by all of us. And it couldn’t have come at a better time: I have just enough energy to really enjoy the spoiling!!

Surgery and date set!

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This is a long post, so apologies in advance. I spoke to the surgeons’ assistant yesterday, and I have my surgery date—May 22, next Thursday, six days from now. On Tuesday of this week I spent almost seven hours at St. Mike’s and saw my surgeon, the director of the breast centre, my plastic surgeon and my oncologist. I went in absolutely wired because I didn’t have a plan. For 16 weeks of chemo, I thought I was getting a lumpectomy, then was told no, bilateral mastectomy 110%. That started five weeks of agony, anxiety, terrible dreams, depression, crying and frenzied research online, on triple negative breast cancer forums, on breast cancer forums, anywhere I could find info. After a week I was just reading and rereading the same articles. I couldn’t absorb any more.

There isn’t much out there for women triple negative breast cancer with no primary tumour. No primary site for breast cancer is rare—statistics from a 2012 multi-centre study in the journal Cancer looked at 770,030 breast cancer patients, and 750 had no primary site. Of the 750 they studied, there was no distinction of patients with triple negative breast cancer, so that study means nothing to my situation. Triple negative is 15% of all diagnosed breast cancers. That’s the biggest problem—the subset of triple negative with no primary is infinitesimally small, so there are no studies. 

No primary tumour means there’s no target for surgery or radiation. The emotional response is bilateral mastectomy—get them the hell off me. When I finally got my diagnosis of TNBC (triple negative breast cancer), chemo was started immediately. No one asked me “What do you think of paclitaxel? How does some cyclophosphamide sound? Would you like to schedule that every three weeks, or does dose-dense suit you better?” No, my onc said this is the drill, the pharmacist sat with me and explained, the dietician told me what foods to avoid. That was fine by me.

Then after chemo was finished, it was “Ah, here are your options, it’s your decision.”

What? My decision? I don’t want this decision. Some women do want it, but I don’t. I want the people who went to medical school and specialized and read journals and go to conferences and Tumour Board every week and see 30 women a day with breast cancer to make this freaking decision for me.

But no one wants to take the risk. Triple negative means there are no markers on the cancer cells, so none of the targeted cancer treatments that work on 85% of breast cancers work. The standard of care is three chemo drugs, which I had, and thank God and all things good, I had a very good clinical response. After chemo and before radiation (a must because of the metastases in my lymph nodes) however, there is no standard of care when you don’t have a primary tumour/site. That’s why all my frenzied reading. Of course I’m only trying to catch up to what my onc and surgeons already know. And the docs gave me four surgical options and a non-surgical (yeah, sure, let’s do nothing and see how that works), but the plastic surgeon customized a fifth option, which I’m going with. 

I thought I was wasting the plastic surgeon’s  time seeing her for a second appointment when, after five weeks, I still couldn’t face a bilateral or even unilateral mastectomy, but knew I could never walk away with these large, dense breasts intact, harbouring God knows what. But I sat with her—Dr. Melinda Musgrave—and my boyfriend, who has been with me at every single specialist appointment, and half of my chemos, and she went through my most recent MRI, the two additional ultrasounds that my oncology radiologist at Princess Margaret Hospital wanted to rule out a different non-breast cancer (all clear, still sticking with the breast cancer diagnosis), and she went over all the options that I had been offered, and then said, “or, we could do this.”

I’m thinking of it as mastectomy-lite. Breast-conserving surgery on both sides, taking my sizeable natural breasts to a demure C or D cup. Everything that gets cut out goes to pathology. Maybe they’ll find my primary. Maybe they’ll find markers that make me not triple negative. Maybe they’ll find DCIS. My oncologist says depending on what they find, I may still proceed to the bilateral mastectomy, but at least I’ll know I explored my options. The surgeon will remove lymph nodes (called an ALND—axillary lymph node dissection) from levels one and two in my right armpit—the ones that alerted me to this great experience in the first place. Those will be analyzed in pathology too. The number of lymph nodes with cancer is the best predictor of survival. The one he removed in the sentinel node excision had cancer, so then I wait and see. My right breast will get radiation, as will the armpit.

So, surgery is in six days. Not long enough to get my house—and groceries, meals, laundry, school stuff, etc—organized. Please cross your fingers and say a prayer or send me all the good vibes you can. Thank you!

 

What’s with this sleeping thing???

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When I read about the side effects of chemo, I saw sleepiness and exhaustion. I experienced both of them, always together—I overdid things, I got exhausted, felt sleepy, slept.

I haven’t had chemo now for four weeks, and while some of the side effects—heartburn, bone pain, mouth sores—are a thing of the past, other wonderful side effects thrive: baldness and hairlessness, rotting finger- and toenails, papery skin, sadness and hopelessness, and the exhaustion.

I have figured out the formula for my exhaustion (excuse me if I’ve already shared it here—I’ve written so little lately, I think most of it is in my head), and this past Monday is a perfect case in point. I got up at 7:30, got Luka to his bus on time, woke Graydon, and we were on the road by 8:50 for a series of meetings that both of us attended. They finished by noon, then we headed for St. Joe’s where Graydon had a follow-up appointment with infectious diseases at 1. I remained in the car because I got an upper respiratory infection from his pneumonia hospital stay and I’m still suffering from it. By 2:30 he still hadn’t seen the doctor, and I had to go to Luka’s school to sign a permission paper by 3:00, so I took off, signed the paper, returned to St. Joe’s and picked up Graydon. We then went to Shoppers Drugmart. Around this time I wondered why I was feeling so sick and realized I had had no food since the night before—duh—and there was nothing fast and easy to eat at home, so I drove across the parking lot for Pizza Pizza’s walk-in special. Luka was thrilled with the after-school snack, and I felt satiated. I then proceeded to clean the kitchen, make a real dinner, clean up after, etc., etc., and bed by 11.

Tuesday, the next day, I slept through the alarm and four of its repeats. I got Luka up, went downstairs, fell asleep on the daybed, got up, pulled his lunch from the fridge, went up to wake him again, and fell asleep on the bed. I told him I couldn’t drive him if he was late, that he would have to take the city bus and subway, and his lunch was downstairs. And then I slept until he came home at 3:30. I slept from 3:45 until 6. Then I slept from 8:30 until midnight, and 12:15 to 7:30 a.m. today.

So on Monday, I spent seven hours outside the house running around. On Tuesday, I spent 13 extra hours sleeping.

When I was on active chemo, I scheduled “out” days, when I had appointments or places to go and things to do, and “in” days, when I would sleep off the time I spent “out” the previous day. That was a one-to-one ratio: out of the house for three hours, sleep through the afternoon the next day, two, maybe three hours. It was complicated by the fact I had an reactive airway disease (really bad, never-ending cough, runny, gummy eyes, really sore throat) from November to end of March, but it was still predictable that I would have to over-sleep amounts of time equal to time spent running around.

For the last couple of weeks, it has been looking like a one-to-two ratio: out of the house for one hour, catch-up sleep for two hours.

Is this the cumulative effect of eight rounds of dose-dense chemo? Add in some depression and a lot of uncertainty (anxiety), plus another infection? Hiding from the world? I don’t know. But I’m sure I’ll sleep on it.

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

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/

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!

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/

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…