Positivity, or pity?

This meme has been circling my facebook newsfeed lately.

I hate it. So much. I want to find the person who made this meme, and kick them in the pants.

How utterly and completely self absorbed. I don’t care if it’s true or not (I don’t think it is, I’ll come back to that later). Firstly, if you truly possess the heart you are claiming here, you will do unto others without expecting any particular treatment in return. Otherwise, you’re just trading favours, which is perfectly fine but doesn't qualify you to post this inflated opinion of yourself.

Second (secondly?), as someone very wise (PS, it was Alli E.) pointed out to me, we are so outraged when others wrong us, but how regularly do we make amends when we are the offenders? You have likely disappointed someone, knowingly or otherwise. We all have. That’s ok, just don’t pretend like it’s inconceivable.

I spend a lot of time in the company of other cancer patients and boy, let me tell you, we have a lot of options for things to complain about (like that time I sharted in my pants because chemo scrapes my gut like sandpaper and turns my insides to liquid!). We all gripe and groan to each other, because we all get it; it’s cathartic. There’s nothing wrong with venting/complaining/whatever from time to time, but I’ve noticed that there are two types of people: those who gripe with humour and those without. Complaining with humour helps me to see the silliness of it all, and to laugh at myself. Others laugh with me, sympathize/empathize with me, and I feel better for the sharing and the empathy. I find it also helps me to accept what is happening as fact, and move on to dealing with it. You are cultivating positivity in your life by finding the humour in situations you can’t control. Whenever I’ve just flat out complained, like this meme does, it cultivates pity, and implies that I somehow deserve less hardship or mistreatment than others. All of my friends will rush to sympathize about how horrible things in my life are, or how so-and-so doesn't appreciate/understand/whatever me. I try to feel better, but the crappy circumstance that made me complain haven’t changed, and I am certainly no closer to accepting or dealing with the hardship in a productive way. Maybe those who cultivate pity on a regular basis feel better after this, but I certainly don’t, and I bet they don’t really either.

So back to why I don’t think the  meme is true in the first place: I believe that for the most part, people DO respond in kind to generosity, but only if that generosity was selflessly given. If there was something in it for you, then why would that person be selflessly generous in return? I’m not saying there don`t exist black hole humans that suck energy and kindness without giving any back. They exist, I just don’t think they’re so rampant that this meme is even remotely representative. This meme is unfounded validation for your self pity.

Well, I’ve had rather enough of it. Here I am, busting my ass to cultivate positvity in a situation that (I’m going to go ahead and say) is probably worse than whatever prompted you to share that meme. Being positive is hard. Sometimes I need help, and even still I’m not always successful (Nick recently talked me down from a night-sweat-induced rage / nervous breakdown, and the other day I nearly yelled in frustration at some old people in a tai chi class...they were really slow...). But here you are, projectile vomiting all your negativity in public spaces where I have to see it and consequently deal with it! Stop it. Or keep it to yourself, you’re not helping the world. At all. In the words of that very wise person, “quitty with dat pity”.

Cultivate positivity in your life, or pity. The choice is yours and, despite the implications of this meme, has nothing whatever to do with the choices of others.

I am...

Lately, I’ve started being able to feel my tumor. I gather that the liver itself does not have pain sensors, but that the membrane around it does (I certainly felt it during the biopsy…), and it’s starting rub against my ribs. I can see it now, too.

We’ve entered a new level of terror, here. But as of this particular moment, I’m not feeling afraid, so that can wait for another time.

During a workout this week I realized that it is becoming uncomfortable to use my core muscles because it makes the thing rub more. Soon, I will likely struggle to participate in CrossFit in the way I am accustomed to, and perhaps even at all. This realization made me panic in a much different way; feeling my tumor makes me more aware of my mortality, in general, but now I’m realizing that I don’t have to die to have things I love taken away from me. If you follow my posts, you know how important continuing CrossFit is to my mental state. What if I can’t go anymore? So much of my identity is intrinsically linked to Jen, the CrossFitter, and what I my body is capable of that it couldn’t do before I defined myself as a CrossFitter..

Except it isn’t capable of those things anymore. So, who am I, now?

In talking with coach Jen, she sees this from time to time; a person discovers CrossFit, becomes incredibly engaged in the community, is incredibly motivated, sets and meets some goals, and generally improves everything in their lives. But as with any sport, injuries can happen. Now suddenly life itself seems overturned. They often feel like they can’t work out while injured, and so they stop coming to the gym and withdraw from the community. If they haven’t got anything else in their lives to focus that energy, they become demotivated and even depressed.

How best to avoid that fate?

I’ve reinvented my own identity before. Not in the way that a Disney child star repackages their adult image for others, but the way that I see myself. As a kid, I defined myself only academically; I was the smart kid who was good at math. When I started CrossFit, making changes to my diet and lifestyle and building muscle, suddenly there were things other than math that I could do: I could deadlift 275 pounds, squat 200, do a strict pullup. I started to define myself as an athlete, or at least someone who was fit enough to be one, if I chose.

But what I can do has changed. If the ability to do those lifts is no longer part of my identity, is it time to repackage my self-image again? My current “job” is Cancer Patient, and while my cancer experience will always be a part of my identity, I refuse to define myself in that way.

As Dr. Jordan reminded me when I had a meltdown in her office, I can still scale movements and weights even further than I already have (if the zoomers can do it, I’m not sure what I’m whining about….), and there are plenty of other activities I can enjoy to keep moving (I’ve recently started attending Tai Chi. Love it. That’s another post). As I talked it over with coach Jen the next day, it occurred to me that what I am hasn’t changed, just what I can do. This is perhaps obvious on the surface, but what it means is that I don’t need to redefine who I am, I just need to start using adjectives more creatively.

We do this all the time when we write resumes for a career change, massaging the standing description of ourselves to match the job description. For instance, what I do currently is work as a fish population biologist. What I am, though, is a good problem solver (I do lots of maths), and that would still be the case in any job. I can’t lift as much anymore, but I am not suddenly unfit or unhealthy (cancer notwithstanding). I can’t do intense workouts, but I can still be the person who comes in anyway (sorry about the outfit there) to do arm circles from the bench and say hullo to everyone. So as I redefine myself again I’m thinking a little differently this time, and defining myself not by the things I can do in the gym, but by my commitment to be there as often as I can, to keep moving as much as I can, and to continue living all aspects of this healthy lifestyle that I’ve built for myself (nutrition, spiritual/mental wellness, etc.), not just the physical fitness part.

That said, I sure as hell intend to deadlift 300 pounds some day :)

Dropping the bomb

On Wednesday I found out that the chemo I’ve been on has stopped working in dramatic fashion; the tumors in my liver haven’t just stopped shrinking, they’re growing again, and are headed back to where we started in the Fall. My Oncologist believes that my cancer has mutated at least once, possibly twice. My cervical tumor was obliterated by the first drug combo (cisplatin/etoposide) but the liver spots didn’t change at all, suggesting possible mutation. The second combo did nothing whatsoever (cyclophosphamide, vincristine, doxrubicin). The third combo, that I’ve been on since September, was working really well for four rounds, but has since stopped. It appears to have cleared up the first mutation, making all sorts of space for the second mutation, which is now resistant to 9 chemo drugs and making its presence known..

My cancer is highly evolved, although not in a very intelligent sense or else it would realize that if I’m dead, it’s dead. Not thinking this through very well, are you cancer…..

So, I’m currently waiting for a call from Princess Margaret’s clinical trial group. My Oncologist believes I can get into a clinical trial for an immunological therapy; one of the newfangled treatments that are in vogue these days. If I understand correctly, the treatment would inject protein antibodies that target receptors on the tumor and basically act as a beacon that direct the immune system to the tumor, which otherwise knows how to hide. I think it will be something like this. There are other similar treatments where you inject a virus that has been trained to “know” your tumor (I think...something like that…) This would be a phase one trial, meaning they are still establishing safe dose limits, dose schedules, and side effects, which is obviously less than ideal. In this scenario, I might either get too small a dose, or too large. If I can’t get into this trial, I do not know what I will do next; this weekend is for research.

Tonight I went for a workout, and I had a terrific meltdown afterward that I had half expected. If I’m honest, I went deliberately to trigger those post workout meltdowns that I know to be so cathartic.

I made a bit of a scene. There was sobbing, a lot of screaming and, because I took rather a long time and finished the workout last, rather a lot of witnesses who were obliged to stand there awkwardly waiting for me finish. I didn’t notice a single one of them. When I became aware of the rest of the room again, there was someone sitting next to me, with a hand to hold (which was precisely the appropriate response, by the way)...my gym family is pretty great.

I was expecting the meltdown. I welcomed it, and the calm that follows a good sob. I wasn’t prepared for the reaction of others when I shared the bad news. As a consequence I’ve adopted the self-preservation technique of dropping the bomb: “My chemo isn’t working anymore, it’s growing again..” and then I run away like a child. I can’t handle watching them realize what the words mean….that my oncologist’s “cupboard” of options is getting bare.

But, I have an oncologist who hasn’t given up on me and seems determined to succeed. I’ve got my fingers crossed for the immunotherapy, which would be badass; I haven’t given up on science just yet. I haven’t given up on myself either, in case you were worried :)

I don't want nouns, I want verbs

I trotted around doing my Christmas shopping this year, more or less just like I have done any other year. It might not have been that way.

I got really good news recently that the experimental chemo I'm on is working; the tumors are shrinking. I've had two scans since starting this line and both have shown progress in the right direction. The large ones are obviously smaller, and the smaller ones are "mostly cleared up" according to my oncologist, who was so excited at our last visit that he told us the news was good in the hallway en route to the room!

There are seven of us now, taking what I've started referring to as the "Texas Cocktail" for short (the drugs are bevacizumab, paclitaxel, and topotecan....it's a mouthful....). The name comes from the fact that our SCCC tumor registry, and the doctors trying to do some proper science on SCCC, are at the MD Anderson Cancer Center in Texas. Two of the women women, both of whom had metastases to various organs and random body cavities, have since had clear scans. Metastases automatically means both of them were stage 4. At least one of them was told she had 6 months to live two months ago, and that is clearly not the case now.

If you've been following along (or you know that the bean shaped thing in the picture is my liver and therefore I have metastases), that means that I am also stage 4. I never heard the words "Stage 4" or "6 months", it's not my doctor's style. I don't really say it out loud, and honestly I don't really think about it too much, but I know it, and have known it since my surgery was first cancelled in April over some "slightly larger" spots. But they're shrinking now, and I expect them to continue to do so and, if they would be so kind, disappear all together.

Not everyone with SCCC has had good news recently. I know what it's like. Leaves a person wondering how best to maximize their time.

I've been thinking about this on some level for a while. I actually started a list of places I want to go / things I want to do, and people I want to go there / do them with, when I was first diagnosed. I started thinking about it again recently when I watched a movie called In Time (yes, I watched it on Netflix just because it had Justin Timberlake......), about a future society where the currency is literally time. When you go to work, time is added to your life. When you purchase something, it is removed. It costs two hours of life to ride the bus. The rich are immortal, the poor might have to walk to work if prices go up, or risk dying before they are paid. The movie was obviously commenting on wealth disparities in society, but I got something different out of it (the movie itself was mediocre, I'm bothering to mention it because the concept is neat). What I kept seeing while I watched the movie was how the perceived value of time differed between characters. This was demonstrated predictably in the movie, with the rich folks being bored with life because they never take any risks that might cause them to die accidentally before using their immortality. The rich accumulate lifespan for the sake of it, and so the poor boy teaches the rich girl how to have fun yaaay.

Cliche aside, I'm attempting to apply the principles to how I choose to spend time (and money that goes towards time-spending activities) more consciously.

So, I officially request of my friends and family who ever might think to send me a gift. Please don't send me nouns, I would prefer verbs*. That is, I want time with you.

Whether it's a trip to a play, a weekend roadtrip, or just a visit with coffee and some crochet, I don't want things, I want do DO fun things WITH people I care about. So, make a date. Invite me to a concert, for a walk, or to keep you company while you clean your room. If I don't feel well enough, I promise to say so. Keep trying, I'll say yes eventually.

* If you already got me a noun, it's wonderful and I'll love it don't worry :P

Thanks Coach

A couple of weeks ago I saw an ad on facebook to nominate your coach for some sweet prizes. "I'm going to nominate Jen Boss," I thought, "she's the best coach!" So I put a little reminder in my calendar on the deadline, because my memory is a sieve (I blame the chemo) and I can't even make it from where I'm standing to the notepad before I forget what it was I was going to write down. I even made a little virtual postit in google keep, which I have started using because it works nicely on my phone, so I can carry it in my pocket and hopefully avoid the forgetful distance between myself and the physical notepad.

So the due date comes along and the little virtual postit pops up in the morning, and I sit down to write 250 words over my oatmeal (yes, I've been eating oatmeal, sorry paleo world but it soothes my poor intestines). I finish a mighty fine 250 words and decide I need to run some errands, I'll read it over and find a picture to send in with it after lunch.

So errands and lunch go by and I come back to my 250 words to submit them but, of course, because it's now the due date and sometimes things don't submit properly on the due date....well I failed to nominate my coach, and that's all there is to it.

Fortunately, Alli is a teacher and therefore much more organized and much less forgetful and certainly less procrastinate-full and actually submitted a nomination on time so, please go vote for my awesome coach :)  VOTE HERE

Here's what I wrote and failed to submit because I am lame:

Just over one year ago I was diagnosed with a very rare, very aggressive form of cervical cancer (Small Cell Neuroendocrine). The moment I announced my diagnosis, coach Jen Boss began organizing a fundraiser and she hasn’t stopped organizing them since. All told, with Jen’s help (and a super supportive community) we have raised over $12,000 for my treatments and for my cervical cancer research Foundation, Love the Snatch.

Jen has also been integral in helping me deal with the loss of strength from chemotherapy, and the ensuing emotional distress when I could no longer do air squats unassisted. Whenever I have a strength-related meltdown, Jen is ready with substitutes that are manageable at my current level, but will still help maintain strength without making me feel depressed in the process! Jen’s substitutes are more creative than your average coach and have included such inventions as the rope climb machine (battle rope over the rig with plate attached; hoist the plate up to the bar and back!

I’ve been treating this fight like a long WOD, and just like in a real WOD, Jen is coaching me through it. With her help, I am retraining my new radiated body, maintaining as much strength as possible, and not just surviving treatment, but coming out stronger at the end. I would love to have this opportunity to give back to someone that has influenced my life so positively.

I am thankful for...

I find the sound of dropping barbells soothing. The symphony of grunting people working hard to move heavy weight makes me smile, and I live for the ruckus that indicates someone has bested their own record. Effort is noisy, I like it that way. The crossfit gym is my normal, my sanctuary, and the one place that I can rely on to make me forget for a time that I am a Cancer Patient, and remind me that the title does not have come at the exclusion of normal life. People often say how great it is just that I make it there to exercise at all. But I have come to associate the sounds of the gym with a powerful feeling of knowledge of my own strength, and trust in my body’s ability to heal itself and overcome. It would take restraints to keep me from accessing that feeling first hand; I can’t imagine a scenario where not going would even be an option.

On September 6, 2014, my cancerversary passed by. It has now been an entire year since my diagnosis. Given the enormity of what has transpired in this last year, perhaps it is a bit odd that I find myself sitting here reflecting on how incredibly fortunate I am. But then again, maybe it’s an entirely appropriate thing to be doing….

The moment I announced my diagnosis, my CrossFit Altitude family was planning a fundraiser. I hadn’t even thought about needing money, when the JY Pi fundraiser was already happening. People I didn’t even know showed up for a workout, donated generously, and by the end of the day I was standing there with nearly $5000 stuffed into an envelope. Hoping I would never need it, I put the money into a fund and, together with my cousin, started a foundation called Love the Snatch to continue raising funds for cervical cancer research. Since then, many generous box owners have given me space to sell Love the Snatch t-shirts, many supportive crossfitters have bought them, and some amazing Masters athletes have donated during the first Masters Only Fun Competition at CrossFit Altitude, raising almost $10,000 more over the next few months for our foundation.

As it turns out, I have chemo resistant metastases, and am in need of money after all to afford experimental treatments that are not covered by OHIP. So, on Sept 27^th, 2014, exactly one year (less one day) after JY Pi, I found myself the slightly uncomfortable center of attention once more as the Ontario CrossFit community (and my awesome family, "common law" family, and work colleagues) came together again for the 2^nd Masters Only Fun Competition and Fundraiser for Love the Snatch. People donated their time and money even more generously than before, and after competition registration, BBQs, raffles, and silent auctions, in only a few hours I was left with SEVEN THOUSAND DOLLARS in a Rubbermaid bin.  The alarming thought is that this would only cover ONE chemo treatment if not for my private insurance, which covers 80%. As it is, I am fortunate that the funds raised will cover the chemo co-pay, some additional complimentary therapy, and even provide a small buffer should I be required to travel in future for trials.

If you’ve read my blog, you know I’m a rather verbose person. As coach Jen addressed the event volunteers, competitors and spectators to tell them about me and the reason we had come together, I could think of absolutely nothing to say that would even come close to describing what it means to someone fighting for their lives, to anyone for that matter, to feel so wholly and completely loved by everyone around you.

Before the JY Pi fundraiser, the O’Quinns had some of those rubber “cause” bracelets made up in teal and white for cervical cancer, with the clever phrase that has since become the slogan for Love the Snatch: “kicking cancer, one snatch at a time”. I’ve worn that bracelet every day for the last year as a reminder.

When I see that bracelet, I think about all of you who have made me soup, given me a ride, offered a ride, or even just suggested your favourite Netflix show. I remember all of the encouraging stories you’ve told about your loved ones who have survived, and your conviction that I will do the same. I think about how CrossFit Games competitor Michele Letendre won a local competition and then gave me half of her winnings. In the last year I have lost most of my strength, but when I see my little rubber bracelet I recall what strength feels like; it channels my own feeling of strength, collects all of your well wishes en route, and culminates in what I can only describe as confidence. I wear my bracelet to remind myself, not that I am a Cancer Patient, but that some day, I won’t be one anymore.

So there you have it. I owe you all for not only about $12,000, but also for the confidence that I will survive. A certainty, I believe, which is necessary for actually accomplishing that goal.

I’m a very independent person. I don’t like needing help, and I don’t accept it easily. How can I possibly ever adequately express my gratitude, much less repay you all, when I feel as though I quite literally owe you all my life? I can’t. Instead, I shall endeavour to give you your money’s worth by not dying. And perhaps make you a bowl of soup next time you find yourself in need J

Health Update: science fails, provincial drug coverage, and melting butt muscles

It has been pointed out that I haven't done any sort of update in some time. I haven't got anything insightful or interesting to say but for anyone who hasn't talked to me directly and cares to be in the know, here it is.

Everything since April

This past April I had finished my chemo and radiation, and was scheduled to have a hysterectomy, which was to be the final step in my treatment. When I went for my pre-op blood work, my creatinine was inexplicably high and I was sent for an ultrasound to check my kidney function.  My kidneys turned out to be totally normal but while I was there, the tech asked me if I would hang around for some extra imaging; they had ultrasound vendors there that day and she wanted to scan me on all machines for comparison. Being more agreeable than the 85 year old man the next curtain over who really had to pee, I stayed in the name of science. Seeing as how my kidney was normal and boring, she decided to scan my liver to check out the spots we'd been monitoring.

Even though the liver spots had been stable throughout my chemo, now they were bigger. The universe did me a solid that day because without that high creatinine, and the aptly timed ultrasound vendor, I would not have had my liver spots checked until after surgery, and goodness knows what state I would be in.

So, I had another CT scan, which revealed 6 total spots (formerly only 2), and I was referred to a liver surgeon who determined it wasn't possible to just cut them out (since it was likely that they would miss some that were not visible on the CT). I had a biopsy (a strange procedure where you are required to hold your breath while they stab you so that your liver doesn't move....) to confirm that it was indeed the same cancer (SCCC), which it was.

After a referral to a new oncologist with experience dealing with matastases and non-reproductive parts, I got started on a new chemo regimen. In the meantime, I signed up to have my tumor sent to Princess Margaret in Toronto to have my DNA sequenced. This is a relatively new thing where they look for the mutation that caused your cancer and if they can find one, sometimes there is a targeted therapy for that mutation.

The last couple of weeks

Last week I found out that my chemo wasn't working. Yesterday I found out that they could not find an "actionable" mutation. Ballsack.

So my last ditch effort (well, not last, but the last thing that I have any confidence in presently) is to try a chemo cocktail that has worked for a few women in my support group with my rare breed of cancer.

Unfortunately, this chemo is not covered in Ontario by OHIP. Our province/country is very good at covering the costs of cancer treatment, for the most part. The issue is that it approves coverage for drugs for which there is evidence of curing the disease. Unfortunately, lots of drugs only have evidence of extending life (for a matter of months rather than years), especially newer drugs, and these drugs are not covered. In addition, it matters what type of cancer you're talking about, and sometimes even what drug combo; I can't go try a chemo that worked for someone with breast cancer without some evidence that it will work for my type as well. This is an extra problem for someone like me with a rare type, where there are no trials to accumulate said evidence because A) the funding isn't there, and B) it is difficult to get enough of us in once place at once time to actually conduct a trial. While a sample size of 3 is sufficient evidence for me to want to try this chemo, it's hardly scientific.

Incidentally, that is one reason we started Love the Snatch Foundation, to raise money for a fund at MD Anderson, the only place that is trying to do research that might end up saving my life.

So, my oncologist is arranging for me to have this promising cocktail at a private clinic, which bothers me on principle (two-tiered medical system and such), but I have no choice if I want to try them. Fortunately, I think my private insurance is going to cover 80% of the cost, which is AMAZING. This still leaves ~$1000 per cycle for me to cover (I have no idea how many cycles will be necessary), but that's a heck of a lot better than no coverage at all.

In other news, I am also looking into cannibis oil, which is an extract from the marijuana leaf and is taken orally in pill form (not smoked, nor eaten in brownies :). There is science for anti-cancer effects (not just treatment for nausea) out of Italy and Spain. We never see it here in North America, but I suspect this has more to do with the drug culture than with its efficacy. Regardless, it is a rather easy thing to do with relatively little risk (I'd rather be high than poisoned by chemo, thanks very much), and I'd feel silly not trying it if it turned out to work and, ironically, I can claim it on my taxes. I am presently obtaining my license to possess and get it ready made as I do not relish the notion of brewing the stuff on my back porch....

Edit: So, apparently cannibis oil is still illegal in Canada. I can get my medical cannibis note all filled out by my doctor, but the new licensed distributors are only allowed to sell me the dried weed. So, what health canada is telling me, is that I have to either smoke it or vaporize it, I can't legally extract the good bits and put them in a pill, which could be tested to know it's exact contents in order to maintain a constant dose (and in order to get a sufficiently large dose to have therapeutic effects and not just solve my nausea). Awesome. This article sums up the current situation nicely.

In OTHER other news, I'm still keeping up with my crossfit! Although my butt muscles have ceased to function properly and my ass has visibly disintegrated. My pants are embarrassingly baggy, I can hardly squat my own self, nevermind a bar, and sometimes when I'm walking around my legs randomly buckle under me. My arms have remained relatively less affected so I'm currently working under the assumption that pelvic radiation has affected things somehow, although the effects seem to be somewhat delayed as I did not notice debilitating weakness for several months.

After bursting into tears in the middle of the gym when I couldn't get back up from a squat, coach Jen has taken it upon herself to find me interesting, effective, and less depressing alternatives. Every workout now contains a heavy sled push, sprinkled with whatever torture device Jen devises for that day. This week, it was a rope climb machine, which was much safer than actually climbing (since I never know these days what my body is going to manage), but most definitely just as effective for the upper body and core, if not more so.

I look like an eyeless flukeworm here but, you get the picture :)