I’ve been dreading this. Both for the last few days and for the last fifteen months. It’s back.
I rocked up to NYU this last Friday, cameras rolling, dripping with both excitement and apprehension. This time, though – the apprehension wasn’t about my scans. Friday was supposed to be my last day of treatment, and I was riddled with a thousand conflicting emotions. I had spent my therapy session the previous day trying to make sense of it… of exactly what moving forward meant. It was time to put the role of ‘cancer patient’ in my spring cleaning boxes and try ‘cancer survivor’ on for size. With my recent weight loss, I thought it might even look good on me.
The weight loss… I wrote quite a bit in my last blog about the weird appetite stuff I’d been dealing with – looking at a gorgeous plate of food and filling with repulsion. And then there was the low energy, the slight sadness that permeated my every thought, the general lacklusterness of everything. I was sleeping ten plus hours per night, trying desperately to identify the foods that actually appealed to me (trader joe’s frozen tamales, sourdough toast, granola bars and sauteed haricot vert…)
I attributed the emotional part of it to a brand of depression that I think often accompanies a transition from being a ‘sick’ person to being a ‘well’ person. It’s a very real thing that is grossly under-addressed, and very hard for anyone who hasn’t gone through it to grasp. The people around you think (and say) – that you should be doing friggin’ cartwheels, fist pumps, popping corks. It’s a hard adjustment, especially when you have been coping with an illness that threatened your life. These kinds of diagnoses force you to ask yourself some really hard questions. They change you.
As for the physical part, the appetite stuff and the lethargy – I chalked that up to irony. I had been told that side effects of my immunotherapy drugs could manifest for as long as a year after I ceased treatment. And I was still adjusting to the new dose of my thyroid meds. I just figured it was my disease’s final ‘fuck you’ to the universe that had awarded me good health.
Turns out, there was a different explanation for it all. I’ve written a whole bunch about ‘scanxiety’ – how living scan to scan is akin to living between parentheses, and how I always go into my scan results appointment with extremely cautious optimism. This appointment was the first one since I started treatment that I went into without fear. I was too caught up in the significance of the final infusion and what ‘scenes’ we were going to shoot that day that the scan results scarcely crossed my mind. I had a present in my bag for Melissa. A journal I had found and bought for myself, and then gone back to the store to buy a few for some women who have been on this journey with me. The cover of the journal bears one sentence, over and over and over again: She saw every ending as a new beginning.
Melissa came into the room and I initiated one of our normal catch-up chats. She rolled her chair up to me and puts both hands on my arms.
“We need to talk about your scan results.”
The rest of the conversation is a blur of ugly words and choking tears and half baked questions and ambivalent answers, punctuated by my constant text messages to my sister, who was due in the next hour to join me for my infusion, ‘COME NOW.’ ‘PLZ HURRY.’ ‘TAKE TAXI.’
Basically, what I learned in the next hour was that the PET CT showed four new tumors. They are all quite a bit larger than the tumors that presented last winter, and because my last scans, three months ago, were clean, this means that they grew very fast – that they are aggressive. To top it off, my red blood count was so low that I would need an immediate transfusion.
The past few days have been a complete shit-show whirlwind of painful conversations, a blood transfusion , an endoscopic biopsy (to determine whether or not these tumors are, in fact, metastases of my melanoma), a lot of tears, a lot of numbness, and a lot of hugs and messages of love and support from the people I’ve begun to share this with.
Part of me doesn’t even want to post this publicly now and open the floodgates. The outpouring of support that I know will follow is something that I thank my lucky stars for, but also something that I know will be overwhelming. I’ve shared this news, over the past four days, with a fistful of people whose eyes I needed to see and whose voices I needed to hear, people I felt needed to hear this news directly from me. I haven’t covered nearly everyone, though, so if you’re reading this and are someone with whom I share a love bond, and you’re learning about this for the first time, I apologize. But you get it, right?
In the interest of reserving all of my strength and focus for facing this battle, I will likely not answer my phone, respond to texts or emails or facebook messages just now. I will, however, do my best to be diligent about posting regular blogs with information and updates. On that note, here is what I know so far…
I have four tumors, two in my stomach and two in my small intestine. The largest is slightly smaller than a golf ball. They are ulcerated, bleeding. This is still considered a low burden of disease, and can potentially be resolved through treatment.
I was given three pints of blood on Saturday, and I actually feel a little less lethargic, probably because (Ariel and I decided) the first pint of blood was from superman, the second from Oprah and the third from Lucy’s friend, Harold. I will be having a brain MRI this Thursday to make sure there are no brain metastases. Fingers crossed is the understatement of the millennium.
Dr. Wilson has decided that the best course of action is targeted therapy. Way back when I first got my stage III diagnosis, I tested positive for a gene mutation called BRAFv600. When I progressed to stage four and started my journey at NYU fifteen months ago, BRAF inhibitors (aka targeted therapy) was one potential treatment course. At the time, I was under the impression that we chose the immunotherapy combo because it was the only one that could actually wipe out the tumors. In my understanding, the targeted therapy could potentially stop the tumor growth but would not reverse it. This is not the case.
Today, Melissa explained to me that we chose the immunotherapy over the targeted therapy because my tumors were so small, and in spots where they wouldn’t immediately impede my functioning. We had the luxury of time, and immunotherapy drugs take a little while to work. The data that had come back at that point had shown that the immunotherapy combo gave me the best odds at both a complete and durable response (meaning the tumors had the potential to disappear and stay gone). Because many patients develop resistance to BRAF inhibitors, my doctor didn’t want to give it to me then because she wanted to save this in her pocket for this exact possibility.
Targeted therapy works fast. With bleeding tumors wreaking havoc in my GI tract, we need shit to work fast. Now, they’re combining a BRAF inhibitor with a MEK inhibitor, which data has shown has reduced the chance of becoming resistant to the therapy. I have yet to research the numbers. In fact, I have yet to wrap my brain around the science of this treatment course. I’m hoping that my fluency in immunotherapy will make learning the language of targeted therapy a little less challenging. Once I get the vocab down, I’ll try to disseminate the info in a few snappy metaphors for y’all.
These new drugs (dabrafenib and trametinib) will be self administered in pill form. They have already been ordered, and the moment after the biopsy results confirm what my oncology team are already sure of (that’s it’s still melanoma), I’ll be washing down the first dose with some water. Of course, there are the potential side effects… but let’s hold off for now on those. In fact, let’s hold off on those altogether. Then again, if side effects mean the drugs are working…I’ll take some aches and pains and yucky skin rashes.
So at least there’s some kind of plan. I’ve been an emotional disaster for the past four days. Mostly because the ‘not having a plan’ thing makes you go to dark, dark places. People have tried to tell me not to, but here’s the thing… when you get told that despite being on the best of the best treatment there is, new ugly big oozing tumors have cropped up in your major organs, you think about death. You lie awake worrying about all the things you may leave unfinished or you cry yourself to sleep pining for the things you may never get to do. These are things I have needed to – not make peace with, per se, but at least make sense of. Now that there’s a plan, I can intellectualize it, look at data and numbers and envision myself in the ‘good’ percentages. I can see some light.
I’m not going to say it’s all going to be ok. And, just for the record, this is something you should never, never say to a cancer patient. Because it’s not ok. In the words of Marsellus Wallace, ‘I’m pretty fucking far from ok.’ This was not supposed to happen. I am so, so angry and scared and sad. And a million other emotions that don’t have names. But I’m gonna fight like a fucking beast against this disease. With my brain, with my heart, with my spirit, and with an army of awesome people behind me and a badass oncology team leading the way.
You’ll be hearing from me soon. Until then, put sunscreen on your children (and yourselves) and go have that funky mole checked by your dermatologist… please!!!