cyclone mel

I’m just gonna cut to the chase and acknowledge that I spoke too soon.  I don’t know who the radiologist at the local hospital is (actually I do, because I have a copy of her CT scan report) or what she was thinking when she read my scans, but my tumors are NOT gone. According to my team at NYU, they are all still present… when Melissa showed me the scans even I, a layman, could see them.  The good news is that they do appear to be slightly smaller, and my hemoglobin levels reflect that they are no longer bleeding. The bad news is that the fevers and all of the gnarly side effects that dominated my last blog post are, in all likelihood, the result of the new cancer drugs I was on.

After my allergic reaction to Cephalexin (the oral antibiotic), I was put on a high dose of Prednisone (a strong steroid) as well as another oral antibiotic (just to safeguard against the possibility of any lingering infection).  Upon my second visit to NYU, my bloodwork showed that my liver levels were elevated to three times what they should be, so Melissa upped my Prednisone dose to 120mg per day (where the normal dose is 20-30mg). And for the next three days I was, for all intents and purposes, superhuman. For the first time in what seemed like so, so long, I felt purely joyful, motivated, inspired and yes, more than a little frantic. My mom equated me to one of those ‘chatty cathy’ dolls where you pull the string and it starts spewing out random phrases… except the string was so long that I didn’t stop spewing until I took a Restoril to knock me out.

By Monday, my liver levels were back down in the normal-ish range, and Melissa decided it was time to re-start the Dabrafinib/Trametinib combo (the targeted therapy cancer drugs) and start to taper off the Prednisone.  The plan was that, at the first sign of fevers or other side effects, I’d temporarily come off the drugs, use the steroids to control the adverse effects, then start the drugs again. Dr. Wilson reassured me that people have had and maintained positive responses from these drugs even when they are taken intermittently to manage side effects.

Tuesday morning, I set my alarm for 8am, so that I could take my first dose, go back to sleep for an hour, and then wake up to start my day. I was super excited for the day, as Lucy (my partner in crime for the cancer documentary) was in NY and would be interviewing me on camera at a sweet theater space on the lower east side.  At 8:45, I awoke to what I can only describe as akin to swimming in a pool of fire ants. It was an all consuming internal burning itch that was quickly spreading through my mouth and down my throat, which felt like it was closing up. After a few frantic texts back and forth with Melissa, I took Benadryl and jumped into an oatmeal bath to alleviate the itch.  By the time I got out of the bath, the itch had subsided and my breathing was normal.  I was to continue my day as planned, with the exception of the fact that I would NOT take my cancer meds again that night. Only Benadryl every six hours, my last dose of antibiotics and tylenol if need be for headaches/fevers that might crop up.

My interview with Lucy lasted several hours, and it was the first time I was being properly interviewed on camera (as opposed to just ‘documenting’ myself) since my recent melanoma recurrence. The interviews I’ve done so far were all in the wake of my ‘complete response,’ when the cancer was technically ‘in the past.’ Being probed while in the thick of it forced me to evaluate a ton of ideas both on an intellectual and emotional level. It was extremely cathartic and enlightening, and it made my resolve to fight that much stronger.

By the time we wrapped at 7pm, I felt a fever coming on, but I was hankering for some xiaolongbao. I wandered around chinatown, increasingly feverish and dizzy, trying to rack my brain to remember if I actually took tylenol or not. I realized I hadn’t, popped two, ditched the dumpling idea and boarded a subway in the throes of a full-out panic attack. Fortunately, by the time I boarded my homeward bound LIRR train, I was finally feeling somewhat ‘normal’ again. Sleep came easily last night.  As scared as I am of the notion that, as of this moment, I am not on any kind of cancer meds, it is SUCH a relief to know that for the next few days there will (hopefully) be no side effects. Just feeling human and ‘well’ today makes it a good day.

People have told me, time and again, that I need to remain optimistic, and while before I explained to these people that my attitude can best be described as ‘guarded optimism,’ that’s not entirely accurate. I’d say, now, that I’m hopefully pessimistic. The hope is there, and it is born of my understanding of and faith in the very real progress that is being made, in leaps and bounds, in melanoma treatment. I know that even if my body continues to reject ‘promising’ treatments, as it clearly has with the BRAF/MEK inhibitors, there are other things to try to keep the melanoma from growing, from taking over.

As for the pessimism… well, it’s melanoma. And I know now, more than ever, just how fierce a competitor this disease is – just how determined these little ninja fuckers are to keep attacking me, over and over again. I’m tired – sooooo tired – of allowing myself to believe that I have won the battle, letting my guard down even for a brief moment, only to hear the alarms sound again and having to arm myself with new, unfamiliar weapons, many of which could potentially backfire.

You have cancer. You don’t have cancer. You have cancer. You don’t have cancer. This has been my world for the last five years.   Many people, including myself, have equated this with a roller coaster. And though I’ve always cringed at how cliche a metaphor it is, it’s pretty spot-on. The thing is, whenever I’ve actually imagined the roller coaster, I’ve envisioned the rickety wooden Coney Island Cyclone, with simple ups and downs. In fact, it much more resembles one of those monsters at Great Adventure with drops so steep and sudden that your stomach pitches into your throat… twists so violent that your rib cage winds up bruised… upside down flips that result in chunks of regurgitated funnel cake in your hair. It’s the kind of roller coaster that, when it finally stops, you think, “Shit. I ain’t never riding that fuckin’ thing again!”

Trouble is, this roller coaster just won’t stop… I can’t get off. The only  thing I can do is pull the restraints on tight and hold on for dear life.  So it is that, with white knuckles and a clenched jaw, I will lurch forward into this Friday’s doctor’s appointment to evaluate with Melissa what my treatment options are now – desperately hoping that we can find something, anything, that can, at the very least, slow this fucking roller coaster down so I can catch my breath.

I am so. over. cancer.

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7 Responses to cyclone mel

  1. mmwm says:

    Yeah, I hate roller coasters myself and wouldn’t wish for anyone to be on one (even a little Coney Island one) for even a few minutes, much less five years, though some people seem to like the sense of adventure. Not me. Give me a sedate and slow merry-go-round anytime. But my friend Liza Levin used the term for her own up and down cancer journey, and I think it’s appropriate in the way that you describe above. When I use that term for how I imagine the cancer world (or the world of other chronic/serious diseases, or other really hard life situations), and for how I experience it as the mate of someone with cancer, I mean that the journey is nauseating, it whips you back and forth, you’re not in control of much that happens, your stomach drops on the descents — which are often unexpected and come just after you’ve even that lovely funnel cake, you’re beat up, bruised, breathless, exhausted when it aaaalllmmmmost comes to a stop … and then the ride continues, and continues, and it sucks.

    I’m sorry that the tumours are not gone, glad they are not bleeding, sorry for the fevers and itching and panic, glad for the moments of feeling normal and good.

    Liked by 1 person

  2. Cha Cha says:

    No comments could express my reaction to what you’re going through. So I’m only going to say I’ll take that ride with you and hold your hand when you’re scared. Rejoice when you’re happy and cry with you when you’re sad. No one needs to go through it alone. And even when you’re not in the mood to talk about it I’m with you.

    Liked by 1 person

  3. Sadie Mullin says:

    Jen you are on some awful ride. Hopefully you get to press the red button soon. Sending you tons of healing Angels to guide you way. Xx

    Liked by 1 person

  4. aliceteacake says:

    I’m sending you love, hope and some pit stops to catch a breath ❤

    Liked by 1 person

  5. Rita Rios says:

    Jen I just wish I could pull the plug. Stop the ride and go back in years. So sorry for all your pain and suffering. I continue to pray for your health. Love you always❤️Rita

    Like

  6. Rita Rios says:

    Jen I just wish I could pull the plug. Stop the ride and go back in time. I’m so sorry for your pain and suffering. I continue to pray for your recovery. Love you always❤️Rita

    Liked by 1 person

  7. Hilary says:

    We are all there riding with you in some way….some of us are screaming in the back, while others of us are hollerin at your side….as many others are trying to keep it together in the middle . Hugs babe

    Liked by 1 person

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