On Beauty

Lilith (Dante Gabriel Rossetti, 1867)

In Ways of Seeing, John Berger argues that "the relationship between what we see and what we know is never settled."  Berger was referring to visual art -- specifically, oil painting -- but let me regardless take that completely out of context and apply it to a woman's self image during chemotherapy. I have heard and repeated to myself such things as "cancer cannot take away your beauty" many times ... I have been tempted to write it on my bathroom mirror in bright, red lipstick. I want to believe it. But most times, it is hard to think that it is true.

My vanity could not endure the gradual loss of my eyelashes. They're still there -- albeit, unostentatious wisps of their former selves -- but I think that the thinning of my once long, dark lashes has hit me the hardest. Alright: I'm vain. I should be more upset about pain, nausea, and loss of appetite -- fear of the future, but I am most mourning my eyelashes. I have always hated my Slavic nose, always thought I had problem hair, wished I had a less boyish figure ... but I have always been narcissistic about those eyelashes. I inherited them from my dad; they were fabulously long, dark, and thick, and I would like to boast that I have never once bought mascara. I will miss them, oh how I will miss them. I'm not a religious girl, but I'd like to say a prayer for them. I will compose haikus for them. Wherever they are.

It's rather difficult to feel "beautiful," much less "feminine," through chemotherapy. Sure; nothing can take away one's inner beauty -- I'd agree with that -- but it's almost impossible to admire the image in the mirror when you hardly recognise it. I avoid mirrors at all costs. I have not been clothes shopping in ages. And it's hard now for me to care much about acting -- an at times superficial industry so dependent upon appearance. Of course, there is spring. It's appropriate that I am going through most of this during winter months. Once the snow has melted and the crocuses have started to peek out, hopefully, I'll start to bloom again too ... cheesy as that sounds to me.

On an unrelated note, the magical sea horse needles have helped quite a bit. I am almost two weeks out of treatment, and so far, no infections, though I did have two terrible days of some pretty bad bone pain. My oncologist hinted yesterday that I might possibly be able to get away with just two more rounds of chemo instead of the planned three. Could it be true? Just one fewer round makes such a difference to me. Fingers crossed that I can hold onto what is left of my precious eyelashes until then. Damn you, chemo! You can take away my beauty, but not my eyelashes!

The First Virtue in a Soldier ...

... Is endurance of fatigue; courage is only the second virtue.

-- Napoleon Bonaparte

...

Yeah, whatever. What did he know?

...

I am ...

So tired; 

I weigh the pros and cons of getting up to go pee.

I would like my red blood cells back, please.

C'est Difficile, la C. Difficile

So. Somehow, I contracted c. difficile. And all I have to say is that it was tres difficile.

"We haven't had a case of c. diff on this floor in a very long time," said the specialist from the Infectious Diseases Department who came to see me.

It kind of made me feel a bit like the dirty whore of the 18th Floor ... sullying the erstwhile clean and infectious disease-free hallways. I was immediately put in isolation, my parents dressed in gowns and latex gloves. My old room had to be scrubbed clean from top to bottom, and the two roommates I'd had had to be notified and tested. I'm a dirty harlot.

Man. Talk about being put in the corner. I felt like no one wanted to be my friend and I had some sort of contagious disease. Well, I guess I did.

How on earth did I get this? I thought that only elderly people in regional hospitals that had bad sanitation records got this. C. diff almost always only occurs among the immuno-compromised (which is why it is normally a hospital outbreak), and apparently, the culprit can be too many antibiotics. I had been put on four oral antibiotics, plus I'd had a few bags of intravenous antibiotics in the two weeks prior to my treatment, so my guess is that is what happened.

Argh! How many more weird things can I get? I hear that polio is making a comeback; maybe I will get that next. Can you think of any other quirky afflictions I might acquire? This is what happens when your body falls apart on you. Chemotherapy is a bad, bad poison. The silver lining is that they cancelled my chemo for that day, so I got away with three days of chemo instead of four. Ha. Suckers. Fooled them.

In other news, I got my second shot of magical sea horses today. (I don't even want to get into the drama at the pharmacy and the fiery hoops and magical loopholes that my parents, doctors, and social worker had to go through to get me those ten astronomically expensive needles.) So far, my bones are not screaming. Fingers crossed.

I feel a bit like a limp rag doll, so many things hurt, I'm down to 92 lbs., or perhaps less now after my stint as an infectious disease strumpet ... but I am watching My So-Called Life on DVD, and getting all nostalgic for 1994. I'm missing my grunge phase (all those high-waisted vintage jeans and over-sized flannel shirts ... where did I put them?). Feeling like I need more Lemonheads and Juliana Hatfield in my life. Re-mourning Nirvana. Remembering what it was like to like the not-so-smart, smoker guys who often skipped class, just because they were hot. 'Tis magical.

(Thanks, Kate)

After Great Pain, The Magical Sea Horses Come

Lately, I keep thinking about this otherwise-untitled Emily Dickinson poem, which begins: "After great pain, a formal feeling comes --" but I keep mistakenly remembering it as "After great illness, a formal feeling comes -- " because I guess I can't help but try to relate it to my present situation and mental state. She was most likely referring to emotional pain, but perhaps Emily did mean to allude to physical pain; she was rather sickly herself, and eventually succumbed to kidney failure in her fifties. Everyone she loved seem to up and die on her. Most of her poetry is about death.

The poem continues like this:

The Nerves sit, ceremonious like Tombs -- 

The stiff Heart questions was it He, that bore, 

And Yesterday, or Centuries before?

The Feet, mechanical, go round --

Of Ground, or Air, or Ought -- 

A Wooden way

Regardless grown,

A Quartz contentment, like a stone -- 

This is the Hour of Lead -- 

Remembered, if outlived,

As Freezing persons, recollect the Snow -- 

First -- Chill -- then Stupor -- then the letting go --

Regardless of whether Dickinson was writing about unrequited love, the death of a parent, or the pain of seclusion, the speaker has endured a recent trauma that registers high on the Richter scale; she is shaken, cracked, broken, and and no longer walks through life with the same body. The tone is funereal, and recalls caskets and headstones; her nerves are like "Tombs," her heart is "stiff," her feet are "mechanical."

Somber stuff ... and why did I get so dark all of a sudden? ... But sometimes I wonder if Dickinson was secretly going through a few rounds of chemotherapy when she wrote this poem. I feel so divorced from my body. I feel like this body is not mine. It is weak and tired. It catches infection after infection. It is fragile. It doesn't feel very feminine anymore. It can't go on the subway, or to the movies, or sit on a plane. It doesn't want to go for a run or even a long walk. It naps as often as a two-year-old. It currently cannot stomach vegetables. It needs so many damn pills all the time. But I am unable to break down or cry about it anymore. I feel very "formal." As though I am watching this happen to someone else.

My body truly fell apart on Christmas Day. A few hours after dinner, I started to feel relatively awful. Then it just all went downhill from there. Three infections, a horrible case of thrush, a fever, subsequent stay in the Emergency Room and blood transfusion later, I was sitting in my oncologist's exam room, awaiting the OK for my next round to start.

"We can't go on this way," Dr. Nicemanwiththemeandrugs said, and so I knew that my white blood cell count was too low for four more days of toxic chemicals. "Two things: Number one, you can't start today. Number Two: we have to do something about this."

That "something" we are going to do is called "Neupogen," and apparently it is a very, very expensive drug that is not available to everyone, and only given to patients in extenuating circumstances. My oncologist has to write a letter of request to the Ministry of Health and I have to fill out a Trillum application in order to get this drug. It is so expensive that it prompted my dear friend Joan to ask, "Why the eff is it so expensive? Is it made out of magical sea horses or something?!"

And the answer to that is yes.

Neupogen is a magical sea horse needle that I will have to give myself for ten days after each round of chemotherapy. It is used to treat "neutropenia," which is basically the hematological disorder also known as "low neutrophils," a type of white blood cell which fights bacterial infection. Chemotherapy does a number on the bone marrow; it slays away the white blood cells, along with the red blood cells and the platelets. If you don't have white blood cells, your body is unable to fight off infection. In extreme cases, such as the ones emergency room doctors sometimes use as examples in order to scare patients who just want to go home into staying in the hospital longer, this can result in death. That is a very crappy situation. Enter magical sea horse needle. Neupogen stimulates the rapid production of the white blood cells. Hopefully, this will mean fewer infections and a lot less of the hellishness for me. Hopefully also, it will mean more eating. I miss eating. I am so sick of doctors getting on my case to do more eating. Earthy is counting my calories, and it makes me feel like it's 1992 (seriously, who has counted calories since the Nineties?), and kind of also makes me feel like I am in trouble all the time. We argue about how many calories my applesauce has. I want to eat! I hate Boost! It's disgusting, and it only comes in three flavours!

Could Neupogen be the answer to my hopes and dreams of getting through this alive? I have heard that one of the possible side effects of this magical needle is "horrible bone pain," (Oh, fantastic! When can I get it?) but my fingers are crossed for bone pain-less magical sea horse wonderfulness.

I hope so. Next week, you might find me lighting candles and playing "Let's Get it On," and waiting for my white blood cells to procreate.

No more ceremonious tomb-like nerves, no!

They Have Egg All Over Their Faces

I am currently sitting in the patient / visitor lounge, avec IV pole. I felt a little better today, so I thought I'd go for a walk and check email and such.

Feeling very frustrated. They think I have an eating disorder. I get why; I have dropped a few pounds off my already small frame. I'm down to 42.8kg or 94lbs, which is low for me, but considering that I was already quite thin, it's not shocking. "Wouldn't someone who had an eating disorder own a scale?!" I shot back to the dietitian when she asked me how often I weigh myself. They seem to be mistaking what chemo is doing to my body for a body image complex. I want to scream. It's not my fault that I feel too nauseated to eat half the time, and the rest of the time, I have mouth ulcers that make it difficult to chew or swallow. And when I do feel ok, I am pounding the food back like nobody's business. I dream of food. Seriously. I am so bored, and lying here most of the time looking forward to my next meal. And now I have a dietitian, and two doctors probing into my childhood and my adolescent relationship with food. They have the wrong girl.

What's more, they are poopooing all over my vegan diet. They're doing everything to convince me to let eggs and dairy back into my world. I told the dietitan that I am quite lactose intolerant, so she was willing to drop the dairy pushing, but is still on the egg train. I said I would consider it.

This is discrimination!

Chemo Diary #1

I wish I'd had a more clever title for this one, but I'm so damn tired and my brain is mush. I am embarrassingly behind in my blogging, and had to play a lot of catch up. I am behind for two reasons: 1.) Blogspot needs some improvement. It is incredibly hard to post pictures successfully on this thing. I get frustrated and save to draft and then get too tired to come back. 2.) I am so, so tired. Did I mention that I am tired? I have to nap every day. I can't figure out if I am five years old or ninety years old. I had a week from hell, and it was only round one. Tomorrow I start round two. Tomorrow and tomorrow and tomorrow ... ugh. I don't want to go back there. I really miss my old life.

I feel kind of Debbie Downer about all of this right now because I am just not sure about all of this chemo business. It is hard for me to drag my sorry bum over to Princess Margaret for another week of inpatient fun for two reasons (the third I will leave out ... the third being "It makes me feel like shit and I don't wanna have it"). First of all, I don't even have cancer right now. I know, I know; shocking. I am having chemo, so you all thought I was a cancer patient, right? Nope. They took the cancer out. It is gone. I am having what is called adjuvant chemo, better known as "just in case chemo." Chemotherapy destroys all of the rapidly-dividing cells. Cancer cells are rapidly-dividing cells. Oh wait. So are the cells in your mouth, the cells that create hair ... shit. Anyway, the hope is that a course of adjuvant chemo will destroy any potiential rogue cells wandering around in my blood stream. The hope.

The second reason behind my Negative Nelly-ism is that the role of adjuvant chemotherapy in synovial sarcoma remains very controversial. In other words, synovial sarcoma doesn't seem to be terribly chemosensitive. There is little evidence that it makes much a difference in preventing further recurrences at all. This is why my oncologists have held off on it until now. What was the point of putting my body through hell, my heart at risk, lowering my immune system, killing my fertility if it wasn't going to make a difference? That was the philosophy before. Then I had a fourth recurrence. My get out of chemo jail free card ran out. So now I am having six inpatient rounds of doxorubicin and ifosfamide, the standard protocol for soft-tissue sarcomas. So basically, I am having "shot in the dark" chemo. Well, that is how I feel about it anyway.

So there it is ... I don't have cancer, yet I am having chemo. There is no proof that the chemo will make a difference, yet I am having chemo. I have spent the past two weeks battling nausea, fatigue, infection, and mouth ulcers so bad I could not eat or talk. My appetite has gone from non-existent to very selective. I can't go anywhere because I might get sick. If someone I know has even a sniffle, they cannot be around me. I am shedding faster than my dog. Everyone around me is throwing engagement parties, going to auditions, dancing at the bars; I am spending the week at my parents', where my mum takes my temperature every two hours. I am so tired that all I can manage to read is magazines, and I have seen the same Friends episodes twice in one week. And this is round one. You can understand my unwillingless to go back to the short term stay unit at PMH tomorrow. But I have to. For some reason.

Maybe, maybe, maybe ... something's gotta give? Miracle chemo?

Anyhow. Here are some snapshots from round one.

Evil Ifosfomide

The "Red Devil," aka Doxorubicin
Day One: waiting for the Ifosfomide to make me sleepy and barfy.Day Two: with my nurse, Mylene. Not feeling so fancy anymore, so I ditched the scarf.
Runny tomato sauce with a few chickpeas. This is supposed to be food.

The Language of my Cells

Biphasic Synovial Sarcoma cells

A few years ago, I came across a book entitled The Language of Cells: Life as Seen Under a Microscope, by Canadian pathologist Spencer Nadler. Dr. Nadler wrote this collection of essays after having worked as a surgical pathologist in California for over twenty five years. One day, he crossed the intangible barrier between pathologist and patient and suddenly each histopathology plate became much more than just a landscape of cells. In each essay, he writes about the "language" of the cells under the microscope, and how, in getting to know each patient, he also became acquainted with "the connections between cells to a larger self."

I've thought about this idea many times over the past few months, as I have had cells on the brain a lot lately ... division and mutation ... mixed signals ... chromosomal translocation ... What freakin' language are my cells speaking anyway? Why have they failed on me so many times? Why does any one cell decide to go rogue? Dr. Nadler compares breast cancer cells to hula hoops ... are there any pareidolic (my brother taught me that word yesterday) images in my histopathology plate? It just looks like a psychedelic poster to me. What do my cells say about me? What is their connection to my larger self?

I've concluded that I can obsess over my cells until I am blue in the face, but there's no one answer to any of these questions. None of my oncologists have an answer to my repeated question of "Why did I get cancer?" The unfortunate truth is, no one really knows what causes most cancers. Sure, we can speculate that my grandfather got lung cancer because he smoked a pack a day and worked in a factory. And a woman who has inherited the BRCA1 gene is at a much higher risk of developing breast and / or ovarian cancer. If you eat few vegetables and have a meat-based diet rich in processed foods and saturated fats and you brush your teeth with trans fats -- sure, you're at a much higher risk for developing stomach or colon cancer. And if you live next to a nuclear power plant, well, maybe you should think about moving. But beyond all of these no-brainers, we still do not know what causes cancer. There are approximately zero ideas out there as to what causes my cancer, synovial sarcoma. Molecular genetics are a factor in that synovial sarcoma has a characteristic chromosomal translocation of t(X;18). I am no scientist, and a couple of Italian researchers explain it better than I ever could, in the ESUN Synvial Sarcoma article:

SS are characterized as a group by the presence of a specific translocation t(X;18), that fuses the SYT gene from chromosome 18 with SSX1 (about 2/3 of cases), SSX2 (about 1/3 of cases) or SSX4 (rare cases) gene from X chromosome. As a consequence of the translocation, a fusion transcript is formed at mRNA level, detectable by PCR tecniques. Cases with both SYT/SSX1 and SYT/SSX2 fusion transcripts have been described. SYT/SSX1 is reported significantly associated with biphasic SS. The association between SYT/SSX1 with reduced metastasis-free survival in localized tumors was not confirmed in all series, and the prognostic relevance of the fusion gene typing is still uncertain (Mancuso 2000, Mezzelani 2001).

But while it is clear that cancer is a genetic disease, it is a total fallacy that cancer is, thus, an inherited disease. The chromosomal translocation involved in synovial sarcoma is a diagnostic tool, and not a cause. The reality is, most cancers are completely random, sporadic, unanticipated. That is a scary notion, so no one actually wants to believe this. I think that is why, when I tell people (I mean "people"; not my smart friends) that I had / have cancer, I usually get the following responses:

"Do you smoke?" (Because mets to the lung only seem fathomable if you are a chain-smoker.)
No!

"Oh ... it runs in your family, right?"
No!

"What is your diet like?"
Strictly organic and vegan ... (And in my head: Probably better than yours, jerk!)

And my favourite ...

"So, now that you have cancer, are you going to eat better?"
What. I am going to choke you now.

It's hard to deal with comments like this, but you learn how to keep the sarcastic retorts to a minimum. What's more difficult is just accepting the randomness of this all. I got cancer, and I didn't do anything do deserve it. And there is nothing I can do to change it.

Last month, I spent a good hour and a half talking to my radiation oncologist, Dr. Incredibly Kind Irish Man. Since my treatment plan has switched to chemo, he is no longer my main oncologist, but I ran into him in the waiting room prior to my first round, and he asked if there was anything he could do, and if he could see me, just to see how I was doing with all of this. This man is such a rarity; he's one of the top researchers in this field and incredibly busy, yet he still takes the time to see how I am doing now and then. He has always called me at home to check in. He has been the bearer of bad news many times but he also takes the time to make sure that I am ok. I am not sure that that is part of his job description. But anyway, I asked him the dreaded "Why did I get this?" yet again, and he spent a good hour talking to me about molecular genetics. A lot of it went over my head, but I appreciate it when highly intelligent people mistake me for another highly intelligent person, and talk to me as such. We talked about the 18th chromosome. I asked him about anti-angiogenesis agents (ok, so how I really said it was, "Why can't we figure out some way to block the blood supply ... you know, cos malignant tumours are vascular ... why can't you guys cut them off at the source? Why? Why?"). We talked about my many recurrences and he told me something I have heard many, many times ("Your particular case of synovial is behaving in mysterious ways."). Then he said something that is now really stuck in my brain: "You know ... we often ask why people get cancer. But given how easy it is for one cell to receive a mixed message ... I think the question is why don't more people get cancer?"

Good question. Scary question.

So maybe my cells are simultaneously speaking Zulu and English while most people's are unilingual ... I need to stick something akin to l'Academie on those bastards.