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):

CAM00182#1

CAM00233#1

CAM00255#1

CAM00288

 

CAM00308

CAM00289

CAM00290

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. 😉

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:

joan-lunden-people-magazine-cover

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

images-3

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.

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 ♥

Surgery and date set!

Image

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!

 

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…

 

Since the final chemo: Graydon’s birthday, more appointments, feeling low

CAM00171 three cats on daybed

More and more time spent sleeping, but I never sleep alone: three bed buddies on the daybed, from left, Angel, Dixie and Princess.

I’ve hit a low spot in my cancer side trip, which I think is directly linked with the end of chemo. No matter how lousy the poison makes you feel, at least you know cells are being killed (the good with the bad, but the bad are what counts). I think I’ve sustained my fighting spirit because I felt I was fighting. Now I feel like I’m waiting for cancer to come creeping back.

The whole mood thing started on the last day. My last chemo coincided with Graydon’s birthday, and my sister Heidi’s. Graydon came to the hospital to meet me for the end of my infusion. Then I got up from the bed, gathered my things, put on my sweater and went to get my jacket. I realized I didn’t have my toque, my favourite—a soft sand-coloured organic alpaca cap hand knit by my friend Annie—so I went back to my room. It wasn’t there, and with incredible speed and efficiency, the bed had already been stripped. I was confused. I wore it there, I wore it throughout the infusion, yet it wasn’t there. I emptied my bag and my purse, I looked in my pockets (knowing full well it wasn’t there), under the bed. The nurses and Graydon looked between the mattress and the bed frame, and we all went through the laundry hamper. I checked the lost and found box, ridiculous since it had only been missing 20 minutes. No cap. I was almost in tears as the nurses said they would keep looking and call me when they found it. They said to pick out one of the donated caps to wear home. Graydon was meeting me so that I could take him shopping for his birthday gift, and that was going to be a fun time—losing my cap and having to wear a red and blue and beige one that didn’t fit was effectively putting a damper on the shopping trip. We shopped, picked out a chain befitting a 21st birthday, and were walking down Queen Street to the car when Graydon looked behind me and said, “Mum, what’s this?” and reached down to the back hem of my coat and pulled up my alpaca cap! I could not believe it! We figured out that the cap must have been on top of my sweater on the bed and I picked up the sweater and put it on with the cap inside. I felt elated. We went out for birthday dinner (which we never do, for financial and immuno-supressed reasons) and the rest of the night went smoothly.

The next day I saw the surgeon and the reconstructive surgeon, and that’s when emotional overload began..

Since last chemo on April 8, I have:

  • Seen Drs. Simpson and Musgrave, and I am definitely more confused than ever about surgery.
  • Had my MRI on the 12th, to check on how good my response to chemo was.
  • Seen Dr. Zirckle re: laryngeal spasms and vocal cords, prescribed Losec, pharmacist says contraindicated with my other meds, I need an ECG, so will followup later.
  • Seen Dr. Fyles at PMH, told me about additional enlarged node not in the axilla, and has requested a pelvic ultrasound before mastectomy. He has also referred me to Psychiatry at PMH.
  • Had my genetic counselling at Mount Sinai, and blood taken for analysis. They are expediting the results so I should have them in two weeks to aid in my final decision about surgery (and if it’s positive for BRCA1 or BRCA2, I’ll have my ovaries removed as well).

So, that’s it for now. I have tried a few things to lift my mood, which I’ll write on later.

Seventh chemo: my dad is the patient this time

Illustrators can make even chemo look good: Using gold nanoparticles, Rice University chemists have created tiny spheres that literally bristle with molecules of the anti-cancer drug Taxol. Credit: Eugene Zubarev/Rice University

Illustrators can make even chemo look good: Using gold nanoparticles, Rice University chemists have created tiny spheres that literally bristle with molecules of the anti-cancer drug Taxol. Credit: Eugene Zubarev/Rice University

I have been fairly absent from my little blog lately—thinking, dwelling, dealing, bargaining, spinning—none of it too productive.The seventh chemotherapy, of my beloved paclitaxel, came and went with the same old complaints of bone pain, tingling fingers and toes now, nails getting yucky underneath, oily-tasting food (the post about my tongue no longer being coated in Vaseline was jumping the gun, or I didn’t knock enough wood, pr something, because everything is back to tasting like oil, or fire or acid, or all three in the worst cases.

I worked in my biweekly pizza lunch volunteer gig at Luka’s school, some little grade-parent duties, bowling night for Graydon (we make it a family affair), appointments for Graydon, and got my big sleeps in before Luka and I went to London to be with my dad immediately following a big surgery: a below-the-knee amputation. I am a firm believer and practiser of having an advocate/companion at the side of the sick person in the hospital. That person has to be ready to be a personal support worker, gofer, quality control supervisor, record keeper, social convenor, you name it. Luka and I stayed in London two nights, staying at the hospital over three days (only three hours on the day of the operation), and brought my homemade almond roca in boxes so that four different shifts of nursing staff got the goodies—everyone likes a treat during their workday, and nurses moreso than many workers because their compassion is tested every minute. My dad’s nurses were excellent and super-super smart, assessing my dad’s pain, which was considerable and complex, and calling his team for different meds. That’s a team approach!

Dad came through his surgery with flying colours and is now back in Stratford, and I’m planning to get down there again as soon as possible.