the other shoe

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!!!

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26 Responses to the other shoe

  1. Erik Schmollinger says:

    The worst news in maybe your best post ever. Be strong, Jen.

    Liked by 1 person

  2. Joshua Weaver says:

    Goddamn it, lady.
    *sigh*
    This fucking sucks.
    Love from across the world ♥

    Liked by 1 person

  3. Joanne says:

    Hi Jen, you are going to kick this . Stay strong. My thoughts and Prayers are with you always.

    Liked by 1 person

  4. Lori says:

    Fuck cancer!!! You are so strong and you got this! I am so sorry this nightmare is part of your journey. We are here when you need an old time laugh, hug, or company! We share this fight with you and please know you are not alone and every feeling, thought, question, sadness, anger, frustration, fear is okay and is all part of the cancer warrior journey. Much love always!

    Liked by 1 person

  5. Cindy says:

    I knew what it took.to post that blog. I love u and I am . here for you.

    Liked by 1 person

  6. Hilary says:

    Omg….I am so sorry I couldn’t take your call the other day…ughhhhh…..I don’t even know what to say…to feel….or how to breathe just yet. I love you….oh how I love you….

    Liked by 1 person

  7. sclazarus says:

    Harness the power of the Oprah blood, yes! There is love and light all around you, Jen. xoxoxo

    Liked by 1 person

  8. Anna Allen says:

    You are a champion, Jen, and you’re not going to let this damn cancer do you in. We are all praying for you. May God shine His light on you, beautiful warrior!

    Liked by 1 person

  9. Elana says:

    Thank you for taking the time to share, Jen. I’ll be thinking about you, sending good vibes. Sometimes to move forward we have to take two steps back. I’m really bad with metaphors or catch phrases, but you know what I mean. I think you are still so strong, at least from the bad ass way that you can illuminate the darkness through your craftiness of words on paper/screen. I’m sending love to you as a leaf, floating north east, to land on your shoulder and give you a hug.

    Liked by 1 person

  10. chacha says:

    As I choke on my heart, because it’s in my mouth and the tears for all that you still have to face, my faith goes to your enormous spirit and bravery. They can’t keep a good Leo down. We won’t have it. I love you.

    Liked by 1 person

  11. You are so amazing, Jen. The amount of strength you have is of a true superhero. FUCK CANCER!

    Liked by 1 person

  12. reneehome@live..com says:

    I hate that 4 letter word! Sending good vibes to you. Thinking of you.

    Liked by 1 person

  13. Daphne says:

    My stomach dropped when I saw your description of this post. You are so strong, and even though the moments seem overwhelming, the fact that you manage to share your voice and spirit throughout this ordeal is incredible. You are a fierce, creating force. Hugs and words and love might be too much to handle, but I give you a smile of support.

    Liked by 1 person

  14. Judith lamberti says:

    All I can do in send you prayers and wish you beat this dam demon!!

    Liked by 1 person

  15. Lucy says:

    What a week, and what a post. I think and love you nonstop and hope you feel how much support we want to be on this hardest of journeys you are handling with such grace ah but how I wish it was easier for you! Sending so much love. Wish I was closer. Everyone in Nyc please give Jen an extra special long distance hug to my favourite writer and favourite girl xxxx

    Liked by 1 person

  16. David Alderman says:

    Positive vibes being sent to you. You are the strongest persn I know, and the is the truth. You got this…i’m 100% certain:) We all love you!

    Liked by 1 person

  17. Aunt Roni says:

    My Beautiful Jen, I’m so sad to hear this news. I’m at a loss for words but not for all the love and prayers I send you. Love You

    Liked by 1 person

  18. Libby Senzon says:

    i love you Jen ! and i understand every feeling you have !! I`m here for you always !! AuntLib

    Liked by 1 person

  19. Sending you lots and lots of positive healing energy from Oregon! Love you Jen!!! Thank you for sharing your story. XXXXOOOO

    Liked by 1 person

  20. Ahmad mansour aka (chef oscar ) says:

    You are my best person I ever met be strong girl we all love you jen and we miss you here in Korea

    Liked by 1 person

  21. Anna says:

    Jen, Paul and I are so sorry to hear this news. I can only imagine how you must be feeling right now, and I think it’s really great that you have decided to share this journey with all of us. The fact that you have cutting edge resources and people working on your case gives us the highest hopes of your full recovery. I hope you know how much we all love you! Xxxxoooo
    Anna

    Liked by 1 person

  22. Mario says:

    Love you,
    Mario

    Liked by 1 person

  23. Laura McLuckie says:

    Fuck Cancer!!! Jen, really sorry to be reading this news. Sending you all the love and support from my little corner. You are badass, and if anyone can get it tae fuck its you~ Lang may yer lums reek ♥ xoxoxo

    Liked by 1 person

  24. lucy says:

    message from the wondrous Harold, he of the blood donation from the third bag of blood:

    “I spoke with Oprah and Superman. They agreed that sharing our blood with you was only the beginning. You’ve also got our hearts, our love and our prayers. (Supe says he doesn’t really “pray” per se but he does meditate so you got that going for you.)

    Just because we don’t know each other doesn’t mean we’re not connected, Jen. We are. We all are. Love to you.

    Harold”

    Like

  25. Sadie Mullin says:

    Jen, I am so sorry you have had a relapse. Keep strong. I will keep you in my prayers and my St Anthony candle. I had not checked my emails since Easter Sunday as Conor”s sister Laura was getting married inThailand. Sending you healing Angels xx

    Liked by 1 person

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