Yucky news from my oncologist: serious post

Matroyshka dolls: layer upon layer of the face we prepare to meet the faces that we meet… (http://step2loveblog.com/?p=1265)

Matroyshka dolls: layer upon layer of the face we prepare to meet the faces that we meet… (http://step2loveblog.com/?p=1265)

When I got my diagnosis of triple negative breast cancer with no primary site, I had two things to worry about: a cancer that was only 15% of all breast cancers, very aggressive and with very limited treatment options (one option); no primary site, so nowhere to target with removal or radiation. When the surgeon said “remove the whole breast,” my oncologist said “we think it’s in the tail of the breast, so a lumpectomy should work.” I was happy with the oncologist’s opinion, and put all thoughts of a mastectomy out of my mind.

Last Tuesday, chemo #7, I had a big appointment with my oncologist. She’d been away for the previous week at the the 9th European Breast Cancer Conference 2014 in Glasgow Scotland. We started with a question of mine:

“With no primary site, and five lymph nodes with cancer, do I have metastatic cancer?”


I was shocked.

“But I thought that was just called regional spread?”

“It’s the same thing.”

Wow. All of a sudden I was one of the women I’d been feeling so much compassion for. When I saw “metastatic” on a blog, or article, I actually thought to myself, “I’m doing everything I can. I won’t go metastatic.” So my appointment started off poorly, and was about to get a lot worse.

Without a blow-by-blow accounting, the gist of it was that my doctor had reconsidered, and was now recommending a bilateral—both sides—mastectomy, and recommending it “110%.” This triple negative cancer is aggressive, and we want to get rid of it once and for all, and with no primary, the safest thing to do is remove all breast tissue. You can consider reconstructive surgery, and it can be done immediately. It will require a number of revisions, since it is a work in progress when you use your own tissue, as opposed to saline implants. They will be large scars. It’s no walk in the park….”

I have been quietly freaking out for four days with this news. When I was trying to think of a visual to accompany this post, I thought of Russian matroschka dolls. The outside one, the largest, protects the others. Inside is the next one, slightly smaller, but still protecting the rest, and so on. The larger one is the me everyone sees. The next, the one that acquaintances see, the next, the one that, say, the neighbours see, then the me the kids’ teachers see, and so on, through the me my friends see, my relatives, my sisters, my children, my man, down to the tiny, unprotected and raw me. And that is how I feel. This diagnosis, not an estrogen-positive breast cancer, Stage III with a tumour on the mammogram that can be measured and staged, but a vicious. aggressive cancer with a tumour lurking somewhere out of sight. I feel so alone.

There is no doubt that I will undergo the operation. I understand the rationale. I don’t want my breasts if they harbour a cancer that can strike back again in six months or a year or two. I want the bast chance to escape this cancer, and if this is the way, so be it.

But the thought of the surgery, or surgeries, since there will be three, makes my stomach heave and my heart jump and my throat close. I feel my shoulders burn and my arms shake. I’ve had many things happen in my life that people have said “I don’t know how you do it.” Well, this time, I don’t know how I will.



My tongue is no longer wrapped in Vaseline!


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!!!


!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!

Between sixth and seventh chemos

Weeks Image to Image.

Nothing much to report. First week, lots of pain (got drugs), nails getting yuckier—thank God the seasons that bare toes are de rigueur are not right now, because mine would freak you out—shedding skin, nails warping up and looking like they’ll be leaving their comfy beds soon. I don’t now what to do except ask the onc next visit. Fingernails I am keeping polished with nail hardener and colour, hoping that they don’t turn red and pop off! I’m still getting nausea, so taking those meds, which happen to be old-school anti-psychotics, I was hoping for some fine inner peace from those, in addition to the anti-nausea properties.

Lots of sleep.

I took Luka and two of his friends, plus Graydon, bowling on Friday after school. The three guys played fun games, good-natured competition, or really, the competition must have been within themselves, because I couldn’t see any.

Three months away from work, and as I sat there, with the country crooners twanging the length of the place, I felt like I was playing hooky. Friday afternoon, 3:30, sitting between tables of dudes drinking back pitchers of beer, clapping and whoop-whooping it up with every good throw, it defs had that feeling of making up a story to skip the office.

And I don’t have to.

I gave myself a needle!

This is exactly what my Neulasta shot looks like. Price tag: $2,850.00, and I will have had eight of them by the time I have my last on April 9th. I borrowed the pic from an interesting blog about a 21-year-old Swathmore senior diagnosed with brain cancer, who is now two years with clear scans (http://orionsneurologicaladventure.blogspot.ca/2011/03/half-way-through-chemotherapy.html).

This is the Neulasta shot that I get 24 hours after the end of each chemo. Only now I can say that this is the shot that I GIVE MYSELF—yes, I gave myself a needle for the first time in my life. Not a big deal to people with diabetes, to my son Graydon, who had to self-inject six days a week for two years after his 30 months of chemo for childhood leukemia left him with no growth hormone, no big deal to many people, but to me, a huge deal. The weather last Wednesday was a one-day snow event, and people from the Golden Horseshoe were told to stay off the roads, so that’s what I told my man—stay home, I’ll get Graydon to give me my needle. As the hour for injection came closer, I realized I couldn’t let Graydon do it without at least observing the shot first—there is no cartridge, like his injections had, and this one requires a little pull-back on the plunger (or whatever it’s called) to make sure there is no blood return. I had to do it myself. I took two Ativans, washed my hands with very warm water, and did it. I counted to 10 very slowly as I pushed the plunger in, then rubbed the site for a minute afterwards, then decided maybe I could be a nurse after all. Now I have to learn how to keep my finger on a pulsing vein—aaaraaagghhh! Never!

My logo/gravatar

My Aunt Karen has been reading my blog and thought a comment or two might have gone astray because she saw another woman—and I thought maybe she saw my gravatar. Then I realized I couldn’t put a pic of my gravatar in my reply, so here is a post all about it. Is this what you saw, Karen?

My sister Juli designed this logo for my cookie-making business—My Beautiful Cookies—in 2001. I had a website designed, a magazine cover featuring my cookies pulling in business, and all systems were a go when Graydon, then 8, was diagnosed with leukaemia. I cancelled the orders for cookies that I had already taken—thank God I hadn’t cashed any deposit cheques—and that was the end of that. But, I still make the cookies (see post for Feb. 18 and Feb. 26), and I use this extremely cute illustration for my gravatar. Thank you Juli!!!

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 am made of poison


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.