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!

Hey Allies: Time to Help!

A lot of times, people who want to be allies to to the metastatic community ask “How can I help?” Beyond listening and being emotionally supportive, I don’t always have a specific thing I can ask them to do–but today I do! And it’s suuuuuper easy to do. You can do it in your pajamas. You can do it at work. You can do it sitting on the toilet while scrolling on your smart phone. (Don’t lie, everyone does it. This is why they invented Clorox wipes.)

Here’s what you do: Go to this webpage. Put in your info in the right hand sidebar. Click “Sign Now.” Then share it with your friends and family and ask them to do the same.

What is this thing I’m having you sign? It’s a White House petition. It works a lot like a change.org petition, except, if you hit 100,000 signatures, the White House promises to respond, unlike a change.org petition, which nobody is obligated to do anything with, no matter how many signatures you get.

Why did I start this petition? Here’s the situation: you may have been reading about the Cancer Moonshot that the President announced in his State of the Union speech this year. It’s an exciting time in cancer research–we now have the tools available to really make significant progress in preventing cancer deaths, and the Moonshot can help make that happen faster. Saving 5 years in research time could mean saving 200,000 lives in the US just in breast cancer alone, let alone across all cancer types, let alone across the world. 

I’m a big supporter of the Moonshot. A lot of its goals are really important and have the potential to be game changers for cancer patients, including metastatic patients. But there’s one key piece that I think is missing: there’s no specific goal on understanding metastasis. About 90% of all cancer deaths, across organs of origin, are caused by metastatic disease, and in breast cancer, that figure is almost 100%. Understanding the metastatic process–how cancer spreads, and how to stop it–is vital in ending cancer deaths. 

But currently, very little research money is being spent on understanding metastasis. In breast cancer, it’s only 7% of research dollars. This kind of underfunded research area, one key to preventing cancer deaths, is just the sort of thing the Moonshot should be working on. It should be bringing focus to areas that desperately need better research–and it’s doing that for childhood cancer, for epidemiology, and other important topics. I just firmly believe that metastasis research should be one of those topics.

So, my petition asks that metastasis research be added as a specific goal of the Moonshot. I’m not asking for money (although shifting funds from early stage cancers to those that cause most cancer deaths would also be delightful!), and I’m not asking to remove any of the other important goals the Moonshot has identified. I’m just asking for metastasis research to be added, because I believe adding it will save lives. 

If you tend to agree with me, please sign the petition, and share it as widely as possible and ask your family and friends to sign it too. Everyone has been touched by cancer in some way, and many of us have had family or friends pass away from a metastatic cancer–my grandmother died of metastatic melanoma–and so I hope we can all come together around the issue of metastasis research, so that less of us have to lose a loved one to cancer.

An Anniversary

I’m flying home from the Living Beyond Breast Cancer Thriving Together Conference as I write this, and I’m terrified to check in on social media. This time last year, I was crying because a truly beautiful person with metastatic breast cancer, Seporah Raizer, had just died of our disease, and I realized that she was one of the 113 Americans we had been honoring with our very first die-in. I certainly wasn’t the only one who sat in an airport bar that day crying my eyes out that such an incredible voice had been silenced forever, that someone who should have had so much life to live, had no more life in her body. 
It was hard enough leaving Philly and the new friends I had made that weekend–friends doesn’t feel like an adequate word to describe the relationships we’d developed, but I haven’t found the right word to express that feeling–and I sat in an airport bathroom and bawled my eyes out because I was terrified I might never see some of them again, that they might not live long enough to be with us in Philly the next year. We had all hugged each other tightly and said “I’ll see you next year” but it didn’t take away my terror wondering who would be gone when the following spring came.

Now, a year later, we know who we have lost. Maria, who I can’t think about without my heart breaking all over again. Ishuan, whose beautiful children will have to live without their mother. Holley, who inspired us to share our truth about our disease and gave us a voice.

We honored them this year, and the more than 40,000 other Americans, and the 522,000 people worldwide, who lives were stolen by this awful disease. We walked in a candlelight procession through the streets of Philadelphia to Independence Hall, and we stood near the Liberty Bell in the cold damp air, and rang our own chimes 113 times. It felt like an eternity, and with each peal, I wished that they would stop–that somehow that number would be smaller. Just one less ring, I thought. Imagine what that would mean to a family grieving the loss of that loved one. Just one less ring.

We spoke our truth, and raised our candles, and we held each other close, knowing exactly how we all felt at that moment. The profoundness of our loss, and the fear in these people we have grown to love so deeply, was written in tears on our faces and echoed in our voices.

And then, we packed our things and in ones and twos and small groups, we hugged again and again so tightly, just as we did last year, saying “I’ll see you next year” and hoped that we meant it. And we boarded our planes and climbed in our cars and cried, in grief and in fear, and tried to allow hope to keep us going, as we drifted away from the city of brotherly love.