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.

Grey Undertones and Silver Linings

We are well into November now. T.S. Eliot had it wrong: November is truly the "cruellest month." Rain and then snow. Rain and snow. Sunset at 4:30. Nothing but potatoes and squash in my organic bin every week.  General gloominess. Naked trees. Toxic agents administered intravenously. Anyone who took a survey course in English Lit could tell you that Eliot was bemoaning April's cruel capriciousness (and refuting the opening lines from Chaucer's The Canterbury Tales):

April is the cruellest month, breeding

Lilacs out of the dead land, mixing

Memory and desire, stirring

Dull roots with spring rain.

Whatever. Give me April any day. (At least by April - deity or stars willing - I will be nearly done with this nonsense!)  

I spent the first half of this month feeling pretty much like a "dull root." It took me awhile to get back on here. Surgery wasn't so bad. It's nothing compared to thoracic surgery and was definitely the easiest surgery I have had yet - even if it was, in a sense, the most dramatic of the six. My gyne oncologist was able to excise laparoscopically this time (also known as "belly button surgery"), so, with the exception of a two-inch incision along the bikini line, which is barely visible, I only have three other very, very tiny cuts: one in my belly button, and one on either side. The plan was to attempt a laparoscopy, but there was a chance that she'd have to make a larger cut again, if there was too much scar tissue from my last surgery. Thankfully, there weren't too many adhesions, so it worked out ok. There's a world of difference between a laparoscopy and a large-incision abdominal surgery in terms of recovery time and post-op pain, so that was a relief, at least.

Unfortunately, however, I didn't have the smoothest recovery anyway. My bladder was bruised or knicked in the process, as I had - pardon the absence of euphemism - bloody urine that was not clearing up. To my disappointment and dismay, I got sent home with the catheter. What an indignity! I argued and pleaded with them to let me go home sans accessory. But the residents couldn't scan me to check for a bladder injury, as I have an anaphalactic reaction to CT contrast dye, and so I had to go home with the ol' pee pee purse until my bladder healed itself. Fantastic. Like I don't already feel like I am ninety years old. Bladders are amazingly resilient, but having an injured bladder that leaks urine into your abdominal cavity is a tad dangerous.  So I relented.  Anyway, my feminist sisters, I know that we all talk about the injustice of having to pee sitting down, complain about the awkward squat 'n pee we must do when camping ... yeah, yeah, yeah ... I peed standing up for eight solid days, and it totally was not worth it.

(How did I go from Modern British Literature to peeing?!  This is my worst post yet.)

Morphine. I would like to write about morphine. It's overrated. People who have never had surgery before dream about it like it is the nirvana of nirvanas. Yes, it mostly takes away the pain, and makes you very spacey, but you always pay for it when you get discharged. At least I always do. I thought this surgery was going to be a breeze, but I spent the entire week following discharge lying on the couch, unable to lift my head, and devoting all of my focus to keeping ice chips and flat ginger ale down. I couldn't even take any of the painkillers that had been prescribed for me, because I was having enough trouble with the nausea as it was. Oh, to be a 97-lber pumped full of narcotics. It's never really the high you are looking for.

November did, however, bring a glimmer of hope amidst all of the gloominess in the form of Barack Obama's history victory.  Thankfully, the U.S. Election was unfolding while I lay chained to the couch. I was so grateful for the wonderful distraction!  I think that, in sum total, I must have watched at least 60 cumulative hours of CNN. I now know so much about voter demographics, Obama's siblings, swing states, Sarah Palin's three-piece suits ... I really could tell you anything.

Though I am not American, Obama's victory inspired me - as it did many Canadians. Of course; "Obama Fever" is spreading faster than the avian flu on a crowded subway car. "Laura, can we turn off CNN?" Earthy asked me the other week while a correspondent was speculating for an hour's slot over what breed of dog Sasha and Malia might possibly select in January, "I can't take any more 'celebrity Obama.' "

At any rate, I think that I can speak for most in saying that we were all pretty disillusioned up here following our own very recent, highly unnecessary Federal Election. And I know that I am not alone in quietly wishing that we could do a leader swap.

Obama's win of the presidency was also a win for cancer patients

across America.  In a speech that he gave a month prior to the election (and also in a campaign ad entitled 'Mother'), Obama voiced his concern about healthcare, deeming it a very personal issue, as he remembered his mother Ann's brave battle with ovarian and uterine cancer and how she spent the last moments of her life more concerned about how she was going to pay her medical bills than how she was going to fight the disease.

Now, I have read some pretty shocking criticisms of this campaign ad. Some accused Obama of using the memory of his dead mother to win votes.  Others accused him of being a "bad son" for not being with Ann Dunham at the time of her death - a son who could have easily afforded to pay for his mother's medical bills because he was "a lawyer who went to Harvard." Whatever your political stance or your opinion of Barack Obama, his central message is this: healthcare should be a right, not a privilege. Having cancer is frightening and difficult enough; filing for bankruptcy because your cells failed on you is a double indignity that no one person should suffer.  As a person who depends heavily upon the healthcare system, I feel very, very strongly about this. Having cancer just plain sucks, but I feel very fortunate to live in a country that offers quality healthcare that is available and equal to everyone.  I am a patient at one of the world's top cancer care facilities, and I have never, ever had to wait long for a scan or a surgery.  I never have to worry about whether I can afford to visit my family doctor.  I can have as many MRIs or CTs as necessary, and I was given surgery less than a week after diagnosis.  This probably sounds like a rant, and I certainly am rambling, but it's the honest truth.  Our system may not be perfect, but it has not failed me.  I guess that is the silver lining.  

Thank you, oh thank you, Tommy Douglas and Lester B. Pearson.

As a final thought, and random digression, I have been thinking about what to do while I am chained to an IV as an inpatient for treatment next week.  I went through all of my ipod lists today, and came across my "just-get-through-this-song."  It's "Pass in Time," by Beth Orton, the British folktronica goddess of Chemical Brothers collaboration fame.  I forgot about how this song got me through radiation.  I hope that you find it as inspiring as I do.

Live Through This / And You Won't Look Back.

Surgery tomorrow.

Very nervous.

I didn't have much time to digest this new surgery date, which is ironic, because I am on a two-day pre-op fast and have nothing in my tum to digest.  (Though tums always find something from last Wednesday to bring back up as soon as pain meds start.)

Also ironic: I gave up eggs this year, and now I am losing mine.

And "synovial" comes from the Latin "synovium," which means "with eggs."

I am pretty mournful about losing these little eggies.  I also want to apologise to them for not having frozen a few for a rainy day.  I had no idea a thunderstorm was coming.

I'm sorry, little guys.  I am kicking myself so hard it hurts.

My fertility specialist, Dr. Kind Eyes, says that I can get little donor eggies and still be the mum I wanted to be, just through a different process.  He said he'd be honoured to help me do that. Very nice man, that Kind Eyes.

I tried everything, though.  I Googled, I ran all over the place, I was frantic.  There was one experimental possibility, but our beloved government has just passed legislation against it. Thanks.

Then I Googled other things and scared myself.  Google can be dangerous.  Don't do it.

I just realised something ... Easter is ruined for me.  No more Easter candy, please.

'Bye 'bye for a few days or less or more ... 

F-T With No Vacation

This time, I wasn't going to tell anyone at all.

I was going to disappear for six months, run away, go into temporary hermitage, a la J. D. Salinger. I'd deal with this quietly, privately, glamourously, a la Jackie Kennedy Onassis. I'd hire the woman who voice-overs all of the healthy cereal commercials in a zen-like voice to record my voice mail message: "Laura is away on a spiritual retreat. She will return to her offices of Life Administration in six months, upon which time she promises to return your call. Have a great day. Om shantih shantih shantih ..." Beep!

When you're a young, otherwise healthy woman in your twenties who's been dealt the cancer card five times during the course of just four and a half years, well ... it gets tiring. And although I have had three other recurrences since my primary tumour was diagnosed in 2004, I guess I never really felt like I had cancer until now. Cancer had certainly interrupted my life, and the five surgeries (those two lung mets especially) and intense radiation course (hello chronic fatigue and rad burn) I had were definitely no walk in the park. But spirit somewhat broken and crippling fear of recurrences aside, I was always able to recover in due time, adjust to a new scar, put my hiking shoes back on, and get on with it. This time I do not feel so lucky. Even though I was technically a four-time cancer Survivor, I feel as though every part of my life until now has been "BC" (Before Cancer), and I am now about to enter "AD" (After Diagnosis).

Why? Because every other diagnosis until now had felt like a blip. "BAM! [Sound of truck hitting me] You have malignant synovial sarcoma in your neck. We'll take it out, follow-up with post-op radiation, and you will be fine." Then: "BAM! You have a secondary lesion in your lung. We'll take it out, keep a close eye on you, and you should be fine." ... Then two more BAMs, but they still felt like blips, because I knew the cancer would be out, I'd heal, and go on otherwise unchanged. It was like my military service. I'd cry, scream, get myself together, and live through the fear, anaesthesia, pain, blood transfusion, barfing, and healing process. I'd learned the drill, and eventually, I knew more or less what to expect.

But I don't know what to expect from AD. I don't know the drill. And what I thought was just a series of blips has turned into more of a blip blip ba do bah blah blah blah blam. In spite of my devotion to healthy living, twelve years of vegetarianism followed by a strictly organic vegan diet, a very active lifestyle, a lifetime of not smoking, and a family history that does not include cancer ... I have cancer for the fifth time. This time it is on my (remaining) right ovary. It has engulfed my right ovary (I had such high hopes for that little gal!), as my gyne oncologist put it, and thereby destroying my fertility in the most dramatic of fashions. AD is pretty bad. I feel like the Sabine Woman statue outside of the Uffizi (only instead of marble Adonises, I am being engorged by ugly, green little synovial cell monsters who refused to die). It is violently robbing me of my fertility (and I was going to be such a cool freakin' organic hippie earth mum), my freedom for the next six months, and that last shred of naive optimism I cherished so very much. A life-altering surgery and subsequent adjuvant chemo were two things I had always feared a little bit, but never imagined I'd actually have to endure in the near future.

Fig.1 Anarchist Green Little Synovial Cell Monster

Because I'm healthy, god damn it! I take such good care of myself. I eat organic kale and friggin' seeds, and clean the floors with vinegar, for crying out loud! I'm angry and shit-scared! Why is my life always being put on hold while all of my friends are moving forward with theirs? This isn't supposed to happen! Because I feel like this:

Top of the Mountain Girl isn't supposed to have cancer.

1 in 2.3 men and 1 in 2.6 women will experience cancer in his and her lifetimes. Regardless, I don't know how or why I got such a rare kind of cancer which accounts for just under 1% of all cancers -- and an even more rare form of that cancer, at that ... a subtype which represents just 8% of that very cancer. The odds of my having this cancer in the first place are so mind bogglingly low that it makes my brain hurt. On top of it all, my particular case of synovial is behaving in ways my oncologists have never seen before, baffling them to the point of making me a subject in their weekly Tumour Review Board. They have no model to follow when it comes to me, and none of them have ever seen nor heard of synovial metastasising to the ovary before. Great. I always wanted to be special, but not in this way.

But this is the card that has been dealt, and I have decided that I cannot ignore it any longer: cancer is a full-time job. Whether one is post-diagnosis, pre-op, post-treatment, or in 'remission,' the reality is, cancer is with you for life. I can count on my amazing, rock star, top-notch oncologists at Princess Margaret Hospital to rid my body of these physical malignancies the best they can, but one cannot ignore the emotional malignancies cancer creates. Cancer kicks you in the ass and knocks you down, and it can hit you when you least expect it. I call mine my "stalker," or perhaps, "some secret assassin / waiting to strike at you," as W.H. Auden put it, is the best image. In order to deal with cancer you need an army of soldiers around you, and that is what I intend to gather during my newfound, full-time cancerployment: veggies, raw food, organic cookbooks, wellness guides, friends, family, art ... this keyboard. I need it all.

Last Tuesday, I wanted to crawl into something that looked like this:

But I know that I can't. And I know that I might be in "Spiritual Retreat"-default to zen message 50% of the time, but I'm not sure anymore that isolating oneself is the healthiest idea. Having cancer is isolating enough. Being part of a demographic (15-39) that accounts for little-to-no attention in the corporate cancer world as well as in the realm of clinical trials -- a demographic that has not seen its survival rate improve by even 1% throughout the past thirty years -- is alienating and frightening. And it sure is freaking lonely in those patient waiting rooms, where I am often the youngest person there by at least thirty years. I don't have much in common with the eighty-year-old man with prostate cancer sitting beside me in the onco room reading Reader's Digest.

Cancerployment is my way of understanding and chronicling what I am going through, and also of providing my friends and family with a way of keeping track of me. It's also a humble offering to anyone else out there who is young, going through cancer, and feeling as frustrated and isolated as I often do. I felt totally alone until I discovered Kris Carr and her "CrazySexyCancer" movement (Google her). Reading something from another young cancer Survivor's perspective is more than helpful. It's freeing.

So, I started this blog. My EMSBF (earthy manliness supportive boyfriend) would like to take credit for the idea, because of the following 'phone conversation we had today:

EMSBF: What are you doing right now?
ME: Oh, just some writing.
EMSBF: What kind of writing?
ME: Kind of like, a blog ... you know, about this stuff. I think it would be helpful.
EMSBF: Did I have that idea?
ME: Huh?
EMSBF: Did I suggest that you do that?
ME: No. I mean ... do you want to take credit for the idea?
EMSBF: Yes. You know, I probably did. I might have. Say it was my idea.

EMSBF and me

Lastly, this is for Earthy, who's stuck by me through it all, and held my hand when I was scared.