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.