"Hopeful, Yet Cautious Period of Time Without Cancer" and Vegan Hootenanny!

Artwork by Earthy

I have not been on Cancerployment for some time, because I felt funny about it.

I did not realise the ... temporality I had inadvertently created with this blog. (Can I say "temporality" without sounding like I am bringing back First year Philosophy Class?)

Cancerployment was all about being sick. And suddenly, I wasn't anymore.

I really hesitate to use the word "remission." I am very wary of it and I have serious reservations about using it now. When you have been diagnosed with cancer five times in your young life, you begin to resent the term a little bit. I thought that I was in remission four times. The sense of betrayal I felt after each remission turned into all-too-brief periods of false security was profound. In other words, just as I never liked to feel led on by the opposite sex, and hesitated to use the term "boyfriend" -- basically until an "I love you" ... I do not wish to feel led on by my health. I won't say "remission" just yet. I am holding out for long-term commitment. An "I love you" from my body.

At any rate, my body has been clear of signs of the disease for about a year and a half now. I will call this a "Hopeful, Yet Cautious Period of Time Without Cancer." And although I may have to return here again in the future, I do not want to write about scans and follow-ups and complete blood cultures right now. That does not mean that I have stopped writing about cancer; it just means that I have changed how I want to write about cancer. For now.

I am in the nascent stage of finishing the construction on a new blog. Cancerployment is a diary of my illness; Vegan Hootenanny! is a diary of my journey towards wellness:

www.veganhootenanny.com

I have some entries ready for posting, but the design process is holding me back a bit. It took me awhile to figure out hosting and Wordpress; good thing that Earthy was around to provide some help, as web design totally eludes me.

Anyhow, please visit Vegan Hootenanny! when you can. I decided on that title for a few reasons. A "hootenanny" is a word with several definitions. It is a yolkley colloquialism for "party." Some use it to describe a "jam session" in music. I wanted to evoke a folksy feel, but also use it to describe what I plan to do: equal parts veggie party and equal parts jam sessions. Vegan Hootenanny! will be equal parts vegan recipe blog (with a focus on cancer prevention and chemo-friendly foods) and equal parts wellness / lifestyle chronicles and tips.

Those of you who know me well know that I am vegan food junkie, self-taught cook, and frequent recipe poster. With the prodding of my mother, I figured that it was about time that I start recording some recipes. (I have also just become the proud owner of a Canon Rebel digital SLR, so I can finally engage in higher-quality food photography.)

I am currently part-way through my studies towards becoming an RHN (Registered Holistic Nutritionist). My experiences during chemo, and especially with in-hospital dietitians and doctors who did not understand my lifestyle and nutritional needs inspired me to study in this field. It is my hope that I can provide nutritional support for other

cancer patients who have perhaps experienced the deficiencies and appetite suppression that I did during treatment.

I have also become a member of The Patients' Association of Canada (PAC), an organization that I feel is very important. PAC is an independent organization that exists to strengthen the voices of patients in Canada and improve their health care experiences. I am excited to write about my experiences and offer nutritional support and resources for the website.

Finally, Earthy and I have relocated from our Downtown Toronto condo to a rural address in Ymir, BC, just outside of artsy Nelson. We purchased five acres of land on Wildhorse Creek Road, a beautiful rural area nestled in the mountainous Kootenays. We are currently living in a trailer on the land, while we build our own timber-frame eco house. (Earthy currently works for The Building Tree, a resource and retail centre selling eco-friendly building supplies and offering sustainable design tips. We're lucky that he has this knowledge base and these resources.) We have an outdoor sink and a teeny tiny trailer kitchen. We are also learning to grown our own vegetables (we have started a small organic garden) in hopes of living almost completely sustainably. This is a huge lifestyle change for me, and one I am excited about, as I continue my wellness journey towards maintaining a cancer-free existence. I will continue to write about this, as I also continue to create recipes in my teeny-tiny trailer kitchen with veggies from our new garden.

I hope that you will join me for some vegetable party goodness. You know, I feel that I can say "hootenanny" because I actually own a hoe now. You bring the fiddle, and I will bring the Vitamix*.

Health, happiness, and green juice,

Laura

*When I can afford one. Five hundred dollars plus! Ouch!

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.