Sunday 19 April 2015

"Hey JY, How are you?"

Time for a health update!

As most of you know, the "Texas Cocktail" chemo I was on stopped working around Christmas time. This was the chemo combo that a doctor in Texas at MD Anderson was testing out, with some success, on the SCCC patients under his care. I managed to convince them to give it to me here, by paying for it myself (thankfully with help from my private insurance and fundraising from all of you). Side note, I was one of less than 10 women trying this out, and our data will be used to help initiate a clinical trial with this combination that will hopefully lead to an official protocol for women with recurrent or metastatic SCCC, and this is a really big deal because there isn't a protocol, currently. Some of the Love the Snatch money we have raised will be donated to further this research. I'm stoked to be participating in science!

Unfortunately, my scan in January showed that it was no longer working, and the tumors had grown back to size. My oncologist speculates that there were, in fact, two mutations in my liver, and that the chemo worked really well on one but not the other, which, finding itself no longer in competition, redoubled its multiplication efforts.

So, I now have several large tumors (Tuna and the newly named Mackerel were 10cm each one month ago), and uncountable smaller ones. I have, depending on who looks at the scan, approximately 15-40% healthy liver tissue remaining, and it's shrinking fast.

I am running out of time. That is not a melodramatic statement.

I recently tried a clinical trial at Princess Margaret in Toronto for a targeted molecular therapy (some of the cool "personalized cancer care" you've probably heard about in the news). Specifically a PLK4 inhibitor, for the med nerds. This was a shot in the dark, because my molecular profiling did not reveal any "actionable mutations" (these therapies are much more effective if they match the drug to your mutation).

Upside, there were zero side effects, and I was able to participate in the 2015 CrossFit Games Open. I posted videos here. I was SO glad to be able to participate in my 5th Open, what an privilege. I'll have to talk more about that some other time.

Open WOD 15.1 at CrossFit Reebok Firepower,
surprised myself  with a 75 lb clean and jerk!
"Superstar" pose with my bombsquad, who came all decked
out in their LTS gear to support me <3




Downside, the drug did absolutely nothing (for me anyway) and I had to quit the trial.

Since then, I have been searching for another trial, and watching in dismay as my physical capacity drains away. The last Open WOD was 24 minutes of titanic struggle, and while it was incredibly good for my mental and emotional state, it did absolutely nothing for my physical fitness. The workout didn't hurt at the time, but I spent the next 4 days feeling as though I had the flu (body aches, incredible fatigue....). I cannot do that again; my body cannot recover.

Aside: I've taken up Tai Chi in the meantime, and I LOVE IT. Honestly, so much better than yoga for me. I've NEVER been able to quiet my mind during the meditation period at the end of yoga. But Tai Chi is moving meditation, and I find myself so focused on the movement that for the first time, my mind was completely silent. Check out your local Taoist Tai Chi club, they are all over the world and unlimited classes are available for a low monthly cost. There are clubs all over the world. It's a wonderful compliment to crossfit, and I plan to continue forever. Also great for anyone who wants to get active but doesn't feel capable of "typical" exercise. It has a focus on health and recovery and is great for balance, body awareness, mobility.....anything.

So, I haven't found an appropriate trial with an opening just yet. HOWEVER, I have found someone to do a procedure called Bland Embolization next Wednesday. He will insert plastic beads into liver arteries, blocking the blood flow to one half of the liver. This will starve the tumors of blood and usually shrinks the tumors temporarily. If successful, they do the other side. Normal cancers take 6-8 months to start growing back again. We aren't sure what will happen with mine, but at the very least we hope this will relieve some symptoms and buy me some time to find my immunotherapy or viral therapy trial.

So, now you're up to date! Thank you all once again for continued support, and I will do my best to keep up with facebook updates and trial news.

As an aside, here's a laundry list of what my body is up to lately. If you're the sort to go "ew, TMI" (I may mention poop!), then please skip it. But I'm writing it down anyway, not as a list of complaints (well, maybe a bit), but because I want everyone to realize the seriousness of things and how quickly they are progressing. Also, I admit to being a little tired of having to answer inquiries of "how are you" by either lying, and saying I'm fine, or else explaining the reality, which I'm never sure they wish to actually hear. It's incredibly awkward. Word to the wise: if you have a friend struggling with something, DO NOT ask them conversationally how they are doing (I've never understood this practice anyway, I think the habit of asking "how are you" instead of saying "hello" and asking a question of actual interest, is really, really stupid.). If you actually want to know how I'm doing, and all the gory details, ask away. Fair warning: it is now rare that I can honestly answer "I'm fine", and I'm tired of pretending, so I will tell you the truth, or if I don't feel like talking about it, I will shrug and say nothing. Please don't be offended, sometimes talking about it is perfectly fine and matter of fact, but sometimes it makes me sad.

What JY's body is up to.

  • My liver is enormous. My liver no longer hides behind my ribcage where it ought to be; it takes of most of my abdomen. I appear 5-6 months pregnant, except not in the right place.
  • Making room for my liver means my stomach is uncomfortably stretched, except without all the handy pregnancy hormones to relax my body, and it's stretching faster than a pregnant person.
  • The stretching in my stomach is painful, and pulls on all of my back muscles. I rely on massage, heating pads, and ibuprofen to sleep and get through the day.
  • Chronic pain blows chunks. It changes me. I am weepy and not pleasant to be around when I haven't taken something or had a recent massage.
  • My gut has given up digestion almost entirely (the liver is so important. Look it up, it does all sorts of incredible things and I had no idea).  I have had diarrhea intermittently (mostly on) for a few weeks now, and my butt hurts. If I actually have solid movements, they re-open unhealed spots, but the not-so solid ones have stomach acid or something and they sting. I probably have hemorrhoids (yes, I have cream that helps from when my butt cracked during radiation).
  • I can tell what colour of juice I was drinking, often within an hour or two. This is less alarming with carrot juice, and sometimes panic inducing with beet juice, if I forget what I had.
  • I need 9-10 hours of sleep to be functional. I need extra if I want to do something active. 
  • I tried a light workout this week. Since the Open, I've gone from being able to complete 15.5 scaled (27-21-15-9 calories on the rower, 45 lb thrusters) in 24 minutes, to doing 7 minutes of box step ups and pushups to a wall. The next day I was barely able to go for a walk that involved some hills. I cried about it.

Wednesday 25 February 2015

Climbing From the Dark Place

People tell me I’m brave, that I inspire them. I’ve always found it a bit uncomfortable to hear, and many cancer patients** would agree (I’ve even seen it listed on the internet under “things not to say to a cancer patient”): brave people choose to tackle scary things. I didn’t have a choice.


**For those who don’t know me, I’ve been dealing with Small Cell Carcinoma of the Cervix (SCCC) with metastases to the liver, since September 2013. Stage 4. “Incurable” (by all currently proven methods of treatment, and a few unproven ones as well…..I’m the person they test new drugs on, now).


CrossFit Games athlete, Michele Letendre, once wrote about feeling this same discomfort having others call her inspirational simply for being a strong athlete (she is so much more than just strong, but that is another writing). Simply put, we both felt unworthy of admiration.


Last night I watched the new CrossFit 2014 documentary. Unexpectedly, and certainly unwittingly, parts of it gave a glimpse into my cancer experience. Those parts resonated so profoundly with me, and on such a personal level, that I felt immediately compelled to write. What came out happened to be a letter to Michele, continuing our ongoing conversation on the subject of inspiration [Michele has given permission for me to repost the letter here].


Michele,

I watched the new CrossFit documentary that was posted today, and found some unexpected insight. In it, there is a segment where Camille has heard there will be sled sprints, and so she excitedly pulls out a sled to try it out. But she is trying on a dirt/gravel surface, and her excitement is quickly diminished as she realizes the challenge. She becomes easily frustrated, angry, and nearly tearful. But Dave urges her to try again, this time without breaking, and on the third attempt she calms down, focuses on the task, and figures out how to get it done.

As I watched this, rather unexpectedly, I saw myself. In that clip, she visits what she calls the dark place. I know it well. Each time I receive bad news, and begin to doubt that I will survive, I experience the same frustration, anger, upset and, finally, resolve; to take the challenge in stride and tackle the problem anew. 

Camille says throughout the film that to win, you must be willing to go with her to the dark place.

That is true, but I do not think she is giving herself enough credit. Anyone can be willing - or at least think they are willing -  to go to the dark place. It is spending time there, without quitting, and then finding your way through and out of the dark place, that sets apart a champion or, in my case, a survivor.

The dark place is scary, partly because of the physical challenge and the pain you know will be waiting there. But worse than that, is the terror-inducing self-doubt that lives there. Doubt that your body is capable. Fear that even all of your capabilities, all of your efforts, and those of people who support you, (and all cumulative scientific knowledge), will not be sufficient to win.

There are, of course, obvious differences between the dark places of a cancer patient and an athlete. The most obvious being that if you lose the CrossFit Games, the world will not end for you. If I lose, it will. But the fact that I am facing a greater fear does not make an athlete’s fear any less real. And besides, I have the advantage of not being given a choice; cancer has happened to me, and therefore I must deal with it. You would do the same. This is why cancer patients tend to feel uncomfortable with being called “brave”. We feel that courage requires there to be a choice in the matter. You, on the other hand, see your fears, and choose to approach them willingly. That is what I admire.

You might claim that you have not exhibited such courage, but I have seen you do it. When you stood waiting for the start of that last event [of the 2014 Canada East Regional, when you were 1 point out of a spot to the Games (at 8:17:00 in this footage)], I could see that you had been to your dark place and come out the other end to the place of resolve. When you picked up the bar without pausing, you trusted your body, your training, and yourself, and left the dark place behind. The feeling I imagine you had standing there waiting, is the feeling I have each time I say “fuck the odds” and trust that I will find a way to conquer my own self doubt, and this disease.

After watching the film I am more comfortable with being called “brave”, if it inspires others to have agency in their own lives. I believe that we both mistakenly thought that people were inspired by the weights we lift (yours, because they are enormous, and mine, because I can lift them at all). But I see now that what they find truly inspiring is that they recognize that we have been to a dark place, found it terribly frightening, and told it to fuck off, anyway. Many believe that, if put in a similar situation, they would become stuck in the dark place, as Camille did on legless two years ago, rather than push through with resolve, as she did in her third attempt at the sled. 

The first step out of darkness is the hardest, and takes a great deal of trust. While the dark place is certainly terribly unpleasant, once there, it is far, far easier to stay than it is to purposely leave. It is far more difficult to trust yourself sufficiently to take that first step, and carry on taking steps, with the belief that your body will do what is necessary.  

It is easy to fall into the dark place accidentally, but it requires courage to go there willingly, and even more courage, sprinkled with a healthy dollop of support, to come out of it.
Jen 


Screen captures from the documentary, CrossFit 2014.


Camille, on the Dark Place in the CrossFit 2014 documentary: 
13:00 - Rich and Camille on mental toughness, and being willing
31:30 - on miserable training days
42:50 - on self doubt
53:00 - 59:00 - Sled practice
59:00 - on mentally preparing for pain 
1:08:00 - the sled event
1:27:00 - Legless (the dark place)
1:31:30 - Worth it!

Michele with laser focus in the last event of the 2014 Canada East Regional. She had to beat Christine Andali to reclaim her spot to the games. https://www.youtube.com/watch?v=Iu7dqWyC0rY at 8:17:00

Monday 9 February 2015

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.

Saturday 31 January 2015

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 :)

Friday 16 January 2015

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 :)