Confessions. So many confessions!

I have a confession to make: I've been trying to write a memoir about my life with cancer.  My second confession is that said memoir isn't very good. As a writer, a reader, a parent, a friend, a daughter, a patient - my failures thus far are frustrating and annoying me to no end. I had such big plans! An ambitious scope and agenda! An excellent, fancy title and all sorts of intellectual discussion about that title and why it matters. But I had an epiphany yesterday, as I sat down to write yet again and wound up confounded: I need to stop trying so hard. I envisioned this project as a Project, a Statement, a Masterpiece.  And these expectations have lead to some cringe-worthy and overblown results. Ugh.

The good news is that writers get to keep writing, and none other than Stephen King himself has given me permission! He told me, "you can, you should, and if you're brave enough to start, you will.  Writing is magic, as much the water of life as any other creative art. The water is free. So drink. Drink and be filled up."  (Spoiler Alert: He'll tell you the exact same thing if you read his book, On Writing: A Memoir of the Craft. It's on page 270 of the Tenth Anniversary Edition.)  So I'm starting anew. I'm done with writing and on to writing.  Maybe I'll even make myself honest and keep you all updated on my progress.  What do you think?   

While all of this soul-searching and intellectual brinksmanship with myself has been going on, real life has also been happening, of course.  On the cancer front,  I've now completed four cycles of Lonsurf, which honestly has been a bit of a surprise.  I was skeptical of its efficacy. But now, two scans into this treatment regimen, I honestly can tell you that my disease looks stable (as of December 14, 2017). Even better, this latest scan even called out several spots as reduced in size (not by a whole lot, but still - any reduction is an excellent reduction in advanced cancer world)! 

This brings me to my third and final confession: my husband and I both were invited to join Taiho Pharmaceuticals's Patient Advisory Board. We accepted that invitation and flew to NYC for a meeting in early December.  Taiho is the company that makes Lonsurf. Of course, I don't take Lonsurf because they offered to fly us to NYC and put us up in a fancy hotel in Times Square during the holiday season! It's the other way around: they put out a call asking for patients who had or were taking the drug in order to discuss the benefits and challenges of using it. They also asked for feedback on their patient education and a set of marketing materials for the company.  I'm aware that I now run the risk of sounding like a shill for Big Pharma, but let me tell you about my trip before you make up your mind.  I was skeptical of attending the meeting myself, both because I lacked huge enthusiasm for their drug and because I didn't want to be seen as having conflicts of interest.  But I'm really glad we went, because Taiho's approach is a unique one and it has potential, in my opinion, to challenge the industry standards of care. 

Americans are known for being big and bold - and when you stop to think about it (which I have, since my academic training is in US foreign relations and international affairs), that characterization rings true pretty consistently, whether we're invading countries, creating international institutions...or treating cancer.  We like the new! The aggressive! The category killers! Which definitely has its appeal and I am ALL IN for innovation - but we also pay little heed, oftentimes, to the consequences of that approach. In colon cancer chemotherapy, that means we've adopted FOLFOX, which combines a platinum-based chemotherapy (oxalyplatin) with two other drugs that have been around for a while (leucovorin calcium, or folinic acid, and fluorouracil, which is also known as 5-fu). Platinum based drugs are extremely powerful, but they're also very toxic and have Rough (that capital "r" is no typo) side effect profiles, as anyone who has taken oxalyplatin can tell you: the usual suspects (nausea, digestive issues, fatigue, low blood counts) that follow most cancer drugs are there in spades, but there's also progressive and sometimes permanent peripheral neuropathy (tingling in your hands and feet), sensitivity to hot and (especially) to cold, jaw pain, throat sensitivity, mouth sores...the list is long and painful. (I experienced some special kind of side effect hell when I realized that oxalyplatin made my eyes burn and hurt whenever I cried - has this happened to anyone else?) In addition, the drugs are so strong and so poisonous that FOLFOX has to be taken via a port infusion - it can harm the veins in your arms if you use a regular IV, according to one of my infusion nurses.  But we figure that all of these issues are worth it, because FOLFOX is so powerful; we'll be able to kick our cancer to the curb.  

Not all countries - or cancer patients - take this approach. Throughout much of Europe, for instance, the first line therapy isn't FOLFOX, but FOLFIRI (switch out the oxyalplatin for irinotecan, which is not platinum-based). Don't get me wrong: irinotecan isn't a walk in the park, and aside from the usual chemo side effects (its nickname is, after all "I run to the can"),  some people also lose their hair on this one, which is a total bummer that I'll talk about some other day. But when it comes to both sheer day to day physical ability and long term toxicity, it's definitely better than oxalyplatin. That said, both require a long day in the infusion chair (plus a take-home pack that lasts an extra 48 hours, which means you have to carry a fanny pack full of chemo around with your for a couple of days and then schlep back to the hospital to be de-accessed unless you or your caregiver learn to do it) every two weeks. It's just not fun. But it's a bit of a different approach, to use FOLFIRI first. 

Apparently, in Japan, the approach differs even more. They shy away from infusions as much as possible!  Many cancer medications are designed to be taken orally, and to strike a balance between efficacy and toxicity, so that the quality of life is a good one even while undergoing treatment. This is Taiho's approach as well - which should come as no surprise, since it's a Japanese company. Lonsurf does have a minimal list of side effects - for me, I'm really nauseous and get headaches, but it's sort of like having a "I drank one glass of wine too many" hangovers rather than the "omg, I'm NEVER drinking again" hangovers that you got in your 20s and then were forced to replicate, minus the fun night that preceded such horror shows, when you took FOLFOX.  In other words, the quality of life while taking Lonsurf is pretty good. A solid B - maybe even a B+ on the off-days!  Which reminds me: the weird dosing schedule for Lonsurf (you take several pills twice a day on days 1-5, skip days 6 & 7, take more on days 8 - 12, then off for about two weeks)? It's to help keep the side effects to a minimum.  What a novel idea! Considering the patient as more than a collection of data points, but as a human being who also has feelings and needs relief! With FOLFOX, you take that drug unless your bloodwork fails to meet the required criteria. With Lonsurf, there are days off built right in.

I'm not head over heels in love with Lonsurf, just to clarify. And I still think that the first line therapy that I took, and that many of us with CRC take, is justifiable and used for the right reasons: it's extremely powerful. But I'm also looking forward to the day - which is coming, I have NO DOUBT that it will arrive sooner rather than later, thanks to the extraordinary work being done in targeted drugs and immunotherapies - when, thanks for the health industry and the cancer patient/survivor community can look back and say, "Wow. I'm so glad those days of having to use such toxic drugs are OVER!" In the meantime, as we wait and watch the revolution underway, I'm glad that Lonsurf - which itself is new, approved several years after my own diagnosis came along - is working for me for now. And I'm thankful that Taiho enabled our trip to New York. After much consideration, we brought the kids along so they could finally meet NYC. It was, aside from a long weekend in Santa Fe this summer, the first actual family vacation - rather than trip to visit relatives - that we've ever taken! So, f- you, cancer, for robbing us of the ability and resources to take family vacations. And thank you (I guess?!) too, for creating the opportunity for one.  

Happy Holidays!