Chapter 20: Trick or treat! Benedict’s getting tricked!

I guess it has been a few weeks since my last update. There isn’t too much to update EXCEPT for one exciting piece of news which most of you have likely seen via facebook or instagram at this point. A few weeks ago I had an x-ray and follow-up with the oncologist and the x-ray showed roughly 40% shrinkage of Benedict compared to an x-ray from August.

We are cautiously excited about that because this is an x-ray we are talking about-meaning it only shows the tumor in 2 dimensions and is not nearly as exact as the 14000 CT scans I’ve had over the past few months. Either way-40 percent is a lot! My hemoglobin and hematocrit are also soaring. No more vampire days for Benedict.

Other labs are good-though in addition to Benedict, my poor liver is taking a beating too. This is “normal” even though my liver numbers would normally raise eyebrows if I were healthy. I’ve been trying hard to be kind to it and not inundate it with quite so many indulgent foods as before. Tasty fall adult beverages are out of the question (my medication package even says so) and I’m sticking strictly to decaf coffee. I really can’t tell a difference, but maybe that’s because I’m resting so much these days.

I also have to keep my stress levels down just so that all of my systems don’t have to work too hard and my body can focus on shrinking tumors and keeping my immune system up to speed. I am still having a little trouble with sleep and wake up very tired. It’s a good thing I was already working really hard on lifestyle and mindset change for this anyway. No stress? No problem!

I went to the BODIES exhibit yesterday because, let’s face it, you haven’t really celebrated Halloween unless you party with dead people. Or maybe it’s because I’m a nerd and my friend Maika–a fellow nerd– had tickets. This was the first time I’ve been around cadavers since 2009 just before I started practicing, and I haven’t been to BODIES since 2006. I could literally spend hours and hours (and maybe days) there, especially now that I have clinical and personal experience that gives me lots of questions to answer. I probably spent a good 20 minutes staring at the lung in all of its various dissections (which are beautiful, by the way) trying to wrap my head around how Benedict has wrapped himself around all of my inner lung workings AND how in the world the surgeon is going to remove him. I may be getting the more painful end of the deal, but let’s just say I’m glad I’m not the surgeon.

I’m also still having some issues with water retention and have also noticed some appreciable weight gain—beyond that of my “normal.” Rumor is this is all a normal side effect of the medication, so I’m enjoying some Lasix (diuretic) as well. There is a direct relationship between being busy/active and how much I swell, but also a direct relationship with activity and how well I feel. Needless to say I walk a fine line with activity. In addition, my hair continues to fall out, but I think (maybe!?!?) it’s also starting to thicken too thanks to some supplements I’ve been taking and some very expensive all natural shampoo I’ve been using. Who knows, I could just be telling myself that to make myself feel better too. We are keeping an eye on my thyroid as my T3 was elevated at last test, and I may have the privilege of going to the endocrinologist if it doesn’t improve in my most recent labs.

Tomorrow I go to see a retina specialist (opthalmologist) because I’ve noticed some vision changes since I started the crizotinib. This is also supposedly “normal” but they want to make sure we’re not frying my retinas (retinae? I don’t know…). My ADPi little-little-little sister Leslie is in opthalmology residency and totally came up with a hypothesis as to what was going on with me, but I can’t for the life of me remember what the term was. I’ll leave that to the physician to decide tomorrow. I’ve certainly had a tour of medical specialties this year. I’m starting to wonder who I haven’t seen–not that I’m eager to add any more names to the list.

In other news-I’m now an aunt of two! My sister gave birth to baby Autumn Joy on Wednesday and they are all doing well. I’m beyond excited to go visit them in Dallas in a few weeks. On the home front, Daniel is in the mountains celebrating his birthday with some Scottish and American friends he met during his bike race(s) in Europe. They are doing a 250 mile mountain bike ride across the north Georgia mountains. We have been enjoying the [finally popping] beautiful Georgia fall colors! We just completed my new favorite TV series of all time-Parks and Recreation. I’m mildly obsessed with Leslie Knope’s character and was really sad when we hit the last episode. Even better–Amy Poehler (the actress formerly known as Leslie) has a great cause called Amy Poehler’s Smart Girls–a website/blog/online community which champions young women who do really awesome and intelligent things. Right up my alley.

On another exciting note—I am so appreciative of the continued outpouring of support from friends and family near and far. For those of you who are still asking how you can help or what you can do-please donate to the Sarcoma Alliance! Benedict is an extremely rare type of sarcoma, which is a rare type of cancer in itself. Because of this, the research and treatment protocols are few and far between. There are also few sarcoma specialists in the world which means many patients go undiagnosed, misdiagnosed, or mismanaged for these rare tumors.

That’s really, really, REALLY not ok, because not only are these tumors rare, but they also metastasize quickly and often have very poor outcomes because they are just so poorly understood. Fortunately for me, divine intervention had me land in the lap of a sarcoma specialist (Dr D’Amato) in Atlanta who just so happens to sit on the Sarcoma Alliance Board of Directors. Don’t listen to what everyone says—sometimes fainting is a good thing. Ok it’s never a good thing, but the turn of events certainly got me into the right hands when I was going downhill pretty fast.

The Sarcoma Alliance not only has great information on their page, but it also provides funding to patients seeking a second opinion who must travel to sarcoma specialty centers—of which there are very few in the US. I have been sporting a sweet Sarcoma Alliance bracelet and also got a pin. There are a few other fun swag items on the Sarcoma Alliance page (link:, or you can make a donation. And for anyone that is wondering-the awareness ribbon color for sarcoma cancers is yellow.

Even more exciting—one charity that benefits the Sarcoma Alliance is called Oceans of Hope (O2H) and is based out of southern California. O2H is a group of athletes who participate in paddleboard competitions all over the world to raise money for the Sarcoma Alliance. I was randomly googling “Sarcoma charity events” one day and ran across O2H and noticed they have a few events all over the US. So I emailed the team director who wrote back and then called me the next day. Turns out they’re having a film screening in LA which will coincide with the APTA Conference at which I’ll be speaking in February. So I’ll get to attend that film screening. And THEN—if I can pull it off (pun completely intended), Daniel and I may return to LA 2 weeks later and participate in a paddleboard race (The Cold Hands Paddle) to coincide with our 7 year anniversary. I just have to learn how to sport a wetsuit and do a little cold water training between now and then. Great excuse to build some strength and get a little more active—two things I desperately need to do anyway.

This is all assuming I will be healthy enough to do all of this in February and March, and/or I won’t be having surgery then. We’re still watching and waiting on Benedict to shrink to a level that makes my surgery much less invasive, so I’m living in a perpetual holding pattern. My next CT scan is in early-mid December, so we will hopefully know a little more then. At a minimum we’ll get a better view at the demise of Benedict. If nothing else, this has been a great exercise in patience and learning that NOTHING is set in stone and I have to be very flexible with plans and commitments. That and I can’t overachieve quite as much as usual in making plans and committing to things in the future. I think there’s a word for that…what is it? I keep forgetting it because I’m not very familiar with it. Oh that’s right—relaxing.

So on that note, I’m going to go enjoy daylight savings (or the lack thereof) and read a book in bed at 7:30 PM. I guess I had a bit more to report than I originally thought. Happy November! It’s the BEST month of the year!

Birthday wishes and the return of a crazy diet in Chapter 21!

One thought on “Chapter 20: Trick or treat! Benedict’s getting tricked!

  1. Hey Julie! I was so glad to read of Benedict’s shrinking act! That’s terrific! I hadn’t checked FB or Instagram, so I had been wondering. I understand what you mean about being a holding pattern…I was once in a similar situation, and looking back I realize it taught me how to live in that mode when necessary–a lot different than my typical control freak behavior. I guess if I were to state it philosophically, it made me see that we tend to think we have more control over things than we actually do…a defense mechanism I suppose. And sometimes you just have to sit back and wait. And do what you can do, of course. Anyway, I’m glad you have some interesting trips to look forward to! Enjoy the holiday season and cool weather. I’ll be sending Benedict shriveling thoughts!
    Ann Lam

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