Well, that was short-lived

My dance with NED is over already. Here’s what happened: I was on 4000 mg of Xeloda a day, and the side effects started to build up on me. My fatigue was bad, like, not getting out of bed most days. You can judge how bad my fatigue is by how messy the house is–The Hubs has his hands full working full time and keeping the kids alive, so cleaning is pretty low on the priority list these days–and let’s just say there were so many toys scattered around, there was nowhere to sit in our living room. In addition to the pretty extreme fatigue, I was starting to get neuropathy in my hands and feet, another known side effect of Xeloda. 

So, we reduced my dose to 3500 mg a day, and then 3000, with a one week break thrown in too. And then I felt much better. The neuropathy was gone, and I actually made dinner a couple of times. I picked up the living room, too, and helped The Hubs move furniture onto our new deck. It was indeed a golden age. 

Except, then I had my regularly scheduled PET last Monday. I got the results Friday, and one of the spots in my liver and the spot on my humerus lit up a little bit. Let me explain a bit about PET scans: they give you this radioactive stuff, and they look at your body in general and see how much it lights up on the scan, and then cancerous spots light up brighter, and they measuring the difference. My two spots aren’t THAT much brighter, but enough to say they’re growing.

So, #bestdocever (who you can now follow on Twitter at @drmarzbani!) gave me some options. Option 1: keep on with the lower dose I’m on and see how it goes. Neither of us thought that was a good idea–we both would expect more progression with that plan. Option 2: increase my Xeloda dose back to 4000 mg a day and live with the side effects, and scan again in 2 months instead of 3, to see how it’s working. Option 3: switch to Affinitor and keep Xeloda in our back pocket for later. I asked #bestdocever what he thought was the best plan, and he said Option 2 or 3, but he couldn’t really say which was better. He did promise that if the fatigue got bad, he’d give me a transfusion as soon as I felt crappy, and he’d definitely transfuse me before the ASCO conference the first weekend of June. (He also agreed to come to the conference, HOORAY! So, those of you stalking us will be able to find us in the sea of people at ASCO!)

I went with Option 2, because I feel like this: I want to stick with each drug as long as possible. I had such an amazing reaction to the high dose of Xeloda that I feel like it’s the right thing to do to go back on the high dose and see what happens. So far, the extreme fatigue hasn’t returned and neither has the neuropathy, but I’m only a couple of days into the higher dose, so we’ll see how it goes. I was very tempted by Affinitor because its side effect profile doesn’t include the level of fatigue that comes with Xeloda, which is, after all, chemotherapy. But if the high dose of Xeloda works to beat back those two tumors, or at least keep them in check, then I’m going to ride that train until it crashes. And if not, then I’ll switch to Affinitor.

NED is indeed a fickle one. He passes in and out of our lives, and this is a reminder that NED is not someone you can count on. I was shocked when he walked into my life, but I’m not shocked that he’s gone again. I’m also not freaked out at the moment. I know there are a lot more treatments I can try–there’s still a lot more IV chemos for me, and hopefully some new immunotherapy drugs will come along too. I told my Facebook friends not to panic, and I want to say the same to all of you. Keep calm and Xeloda on!

Bacon and bourbon cured my cancer

That headline is a lie, of course. My cancer will never be cured. But apparently it CAN be beaten back so much that I have NO EVIDENCE OF DISEASE!!! ALL CAPS FREAK OUT!!!

I had a PET scan on Monday with results due at an appointment with #bestdocever on Friday. Then Holley Kitchen died on Tuesday. If you missed her video that went viral, go watch it. She had such a beautiful spirit, and it gutted me when she died, leaving behind two boys, the youngest a 4 year old…just like The Girl. So, I texted #bestdocever and said “Holley Kitchen died today, her youngest is 4. Tell me that won’t be me.” And he texted back, “Naw, I have good news for you on Friday.” 

So, Friday comes around, and I go to the appointment. And we talk about my conversation with Joan Lunden, and the meeting I had the day before at The Hutch with other breast cancer advocates, and he gives me my check up and asks about my side effects from Xeloda, which at this point are fatigue (my constant companion) and looking tanned and freckled. So, pretty minimal.

Then #bestdocever says “I guess we should talk about your PET report. You know, unless you don’t want to.” And I said, “Well, you said it was good news.” And he said, “It’s OK.” And I was like, “Oh. So, just sort of good news, then.” And he said, “I’m kidding, it’s amazing.”

And we went through the report section by section, and each one said things like “metastatic lesions resolved” and “no longer any pathological FDG uptake.” In fact, my bone tumors aren’t just dead, the bones appear to be healing. And he carefully went through the liver section of the report, and said that he’d spoken in detail with the radiologist because he wanted to say I was NED, but wanted to make sure the spots on my liver really aren’t cancerous anymore. And the radiologist assured him that they weren’t. At this point the word “NED” was swimming in my brain…and as we got to the end of the report, I said, “So I’m NED?” And he said “Yep, you’re NED.”

As I was leaving, I told #bestdocever I was especially surprised about my liver because I’d been on a cruise the week before and frankly, I drank a lot, way more than usual. And he wisecracked, “Well that bourbon must be working, keep it up.” I also ate a lot of bacon. So I’m going with the theory that eating a lot of bacon and drinking a lot of bourbon will cure cancer. It’s as good a theory as black salve, drinking breast milk, or eating a lot of curry, amiright?

I honestly never thought I’d get there. #bestdocever had said at the start of this shitshow that NED was his goal for me, but I really didn’t think it would happen, especially after all that progression last spring. I’m still in shock. I knew Xeloda is a drug that people can have exceptional responses to, but I never believed I’d have THIS exceptional of a response. I feel like I’ve climbed back up the cliff a bit. It’s both thrilling and terrifying. But mostly thrilling. And it’s the first time since I was diagnosed that I’ve truly seen The Hubs happy, which makes my heart sing.

How long do I get to dance with NED? There’s no way to know. NED means my cancer is too small to see on a scan, but it doesn’t mean it’s totally gone. Someday it’ll come roaring back. But not today. Not today. Today we dance.