sh*t just got real

while i was in my doctor’s appointment today, i had my phone out, voice recording the doctor for obvious reasons (although i’m pretty confident that my sister, ariel’s notes are more than thorough). text messages kept popping up to the tune of, ‘have you seen the doctor yet?’… ‘what happened with the doctor?’… ‘any news?’

now, these messages were from some of my nearest and dearest. there is not one minute that goes by that i’m not grateful for the large number of people that ‘nearest and dearest’ applies to.  i’m not a people collector on a superficial level – i have a huge, tight-knit extended family and have been fortunate to meet and maintain bonds with a good lot of beautiful individuals on my journey. the only negative thing about any of this is the fact that it spreads me thin, and i’ve always been very self conscious that this makes me seem flaky.

and so i want to reiterate now that one of the reasons i started this blog is to keep all of the wonderful people in my life informed of everything i’m going through, every step of the way, without having to have twenty different variations of the same conversation every day… without having to spend my time, time that now is more precious than ever, talking about cancer. of course, there are going to be times when i need to talk about it, and that will come out as it needs to. but i really hope that the people who love me are not going to be insulted when i say to them… ‘it went well today, read the blog if you want the details.’

so, what happened with the doctor?

i met ariel, my rock star of a sister, just before noon at NYU’s cancer clinic. we registered with the hospital, then headed up to the business office, as i had to pay for this consultation out of pocket.  the hmo that will be managing my medicaid won’t kick in until february first, and my doctor doesn’t take straight medicaid as of yet (she’s new to the practice). fortunately, both the hospital and other doctors in her clinic do take straight medicaid, which means that, going forward, almost everything will be covered. we finally made it up to the doctor’s office, where a photo of my palm was taken. on subsequent visits to NYU, a scan of my palm will be used to identify me. how cool is that? it’s like, the future.

when melissa wilson finally walked into my exam room, i knew that i liked her immediately. she told me that she would be typing while she collected my history, and apologized for the fact that her eyes would be trained on the computer. the fact that she acknowledged that, the necessary lack of eye contact, in and of itself, was comforting.

both during the interview and the physical exam that followed, she was thorough and i found her very easy to talk to. the dialogue flowed naturally and we laughed about quirks. about woman things. about human things. and then it came time to get down to business. dr. wilson told me that she would explain the progression of my disease as if i knew nothing about melanoma. and then outline my treatment options.

despite the fact that i know a good bit about melanoma at this point, a few misconceptions were cleared up and i did learn a few new tidbits. as she spoke, dr. wilson used a blank piece of printer paper to write key words and draw simple illustrations as she went, much in the way i would use the white board in my own vocabulary lessons. I’m a very visual learner, and so i was able to follow, process and retain much of the LOADS of information that was being delivered.

i’m not going to go into the details of what melanoma is or how it works but, as i’ve explained to many people who are surprised by the fact that skin cancer is so deadly, melanoma is like the ninja of cancers. and once it sneaks its way into the bloodstream or lymphatic system, it can find its way to any part of the body. as i mentioned in my last entry… this past year has seen more long term results in melanoma treatment than, well, ever. there’s a reason that, before, when you looked up prognoses – stage three shows the stats for the five, ten and fifteen year survival rates, while stage four often only shows the survival rates for five years. are there people out there who were diagnosed with stage four melanoma more than ten years ago? yeah. but not many. in fact, one of the things i learned today is that, until now, the average life expectancy for someone with distant metastasis is a year. this was the first time during the appointment that tears escaped me.

dr. wilson began to outline my treatment options. she wrote the number 1, circled it, and then wrote the word immunotherapy, followed by the drug name Ipilimumab, at which i cringed. this had been one of the two options I had been offered in korea, and I had read about this form of treatment and its potential side effects. however, according to dr. wilson, the more severe adverse effects only manifest in a small percentage of patients, and many go through the treatment feeling ‘normal.’ she then wrote ‘PD-1‘ on the paper, at which i did the opposite of cringe. when i first got my most recent biopsy results, my godmother took to the interwebs to find me a cure, and sent me links to articles about this very newly FDA approved (like, last month) drug that was getting unprecedented results. basically, dr. wilson said that the PD-1 inhibitors are not available as a first line (Plan A) treatment. Patients are only eligible for this course of treatment if they failed to respond to both immunotheherapy and targeted therapy (which i’ll get to in a moment).

but, buuuuuuuut. this is where dr. wilson shimmied in her chair a little, started speaking in a slightly more animated tone. i knew she had been leading up to something, because when she had first taken out the paper to start outlining the treatment, i saw her have an epiphany… it was a subtle lightbulb over the head followed by pursed lips followed by a nod that wasn’t directed at me… it was a very quick thing that likely wouldn’t have been visible to someone who is less obsessed with recognizing behavioral cues. but i knew that, just before beginning, something significant had dawned on her and here it was. she proceeded to write the words ‘clinical trial’ on the page and then put a box around the words, adorned with a star.

in the next few weeks, NYU will be starting – not exactly a clinical trial, since both drugs are approved – what is called an EAP, or an early access program, where ipilimumab and a PD-1 inhibitor will be used together as a first line treatment. the immunotherapy will basically activate all the T-Cells in my body to go attack the cancer cells, and the PD-1 inhibitors will basically turn off the little voice in the cancer cells that say ‘no, please don’t attack me.’

essentially, this EAP will give patients access to this new drug before exhausting other options. the only things that could keep me from being enrolled in this EAP are if i have any mets in my brain (my scans last week showed none, but i will be having an MRI wednesday to confirm these results) or if the start date of the EAP is pushed back due to technical/bureaucratic hiccups. although the possibility of getting this shiny new course of treatment is super promising, the downside is that any side effects could be amplified.

according to my doc, the burden of my disease is low right now, meaning it hasn’t spread to too many places and it’s not effecting my normal functioning at the moment (ie, i’m not going to die tomorrow). as such, she feels that waiting a few weeks would be worth the potential long term benefits of enrolling in the EAP. and she outlined the other treatment options, such as targeted therapy, which is comprised of inhibitors that specifically treat people with the BRAF mutation, which i mentioned in my last blog entry. i’m not going to get too deep into that now, but i’ll say that there are some really valid reasons not to use this as first line treatment.  so, for now, the plan is to try to get into the EAP, and if i don’t, i’ll start immunotherapy immediately.

both of these treatments will entail me spending one day every few weeks at the hospital getting the drugs intravenously. the immunotherapy is a four month course of therapy, and (i may or may not remember this correctly) – continuation on the drug for ‘maintenance’ afterward is not yet FDA approved (meaning insurance wouldn’t cover it). if i do wind up in the EAP, i’ll continue to get infused with the PD-1 inhibitors every two weeks for the foreseeable future.  of course, there’s no telling how i will respond to the drugs. the drugs themselves could wind up doing more harm than good, and i was warned that certain symptoms and side effects would result in me being pulled from the drugs immediately and a new, different course of treatment would need to be planned.

so now, i have some picture of what my life will be like going forward. i am locked down in new york, which is what it is –  i could think of worse places to be glued to. i will be able to have some semblance of a routine, of a life. and i suppose i’ll fill that life with things that keep me mentally engaged and people that keep me well fed, emotionally speaking. so, i have to sacrifice some of my independence. i’ll deal. i’m in a beautiful, comfortable home where me and my dog are welcome and very loved.

when i got home today, my mom asked if i wanted to get another opinion at sloan kettering and i said absolutely not. i mean, these are the drugs that are available and, based on what i knew going into the appointment today, this is the most aggressive, up to date treatment that there is. dr. wilson (and the rest of the staff in the practice) treated me with respect, didn’t condescend to me for one second, was brutally honest and gave me a few really big hugs as i made my way out. the team there made me feel like i just got inducted into a secret society… so no, i don’t feel the need to explore other options. i landed just where i needed to.

as awesome as the doctor visit went, it all still sucks. like, it really really sucks. today was the first day it seemed real. like, i have this disease that could kill me… and pretty quickly. when dr. wilson finished explaining the treatment plan, and after i had agreed to let her lead the way, it was time for me to ask questions. i looked her in the eye and i said, ‘you know what question i’m going to ask. everyone asks the same question, right?’ she nodded. she knew. but she let me phrase it how i needed to, and so i asked, ‘is there the possibility that i’ll have a somewhat normal life, one that lasts a while?’  she said that if i had asked her that question two years ago, she would have said no. but to me, today, based on all she knows, all that’s dramatically changed in the realm of melanoma treatment, she was able to say yes… there is that possibility. i’ll take it.


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8 Responses to sh*t just got real

  1. Jess Steele says:

    Thank god for possibilities. I love you, Jen. Don’t spread yourself too thin. We are cheering from the sidelines and just this blog – this glance in our direction – is all we need. I’m so happy your first appointment went well. It sounded phenomenally successful. Thinking of you and so happy your family is by your side, xoxox


  2. liza levin says:

    like me……you are belted in the roller coaster………try to enjoy the ride……wonderfu meeting you! ronnie liza levin

    Liked by 1 person

  3. sclazarus says:

    I know you will out run the ninja. I’ve got you in my heart and mind in a pink bubble surrounded with sparkles. xoxo


  4. Hilaryful says:

    Xoxoxox hope is our greatest power!


  5. Debbie Smith (schneider) says:

    Jen… I m so sorry for what you are going through. You are in my thoughts and prayers.


  6. Lori Schneider says:

    Take that answer and hold onto it, let it lead you through this nightmare. when you get scared asked the question again and hear the same answer, when you feel you can;t fight anymore ask again. this is you team and let them lead you through this. That feeling you go from your doctor, that trust is so critical in this fight. This team even though you are surrounded by love and support this team is the realty of the fight. Matt and i knew right away when we met Penelope’s team that we were in the right place and you have to hold onto to that. There will be many moments of laughter with this team, I can promise you that, there will be moments of normalcy when you are learning about their life just as much as they are learning about you and then their will be the moments of the science and the art and the trust that you have in their skill. Penelope’s Dr’s always said “it is a little bit of science, a little bit of an art”. We think of you always and when you are ready we would love to see you xoxoxo


    I know its hard but dont fret the list of side effects etc.

    Marcy Westerling


  8. Stephen Reed says:

    Jen, I was shocked to read your recent Facebook updates. Our thoughts are with you. Steve, Vicky and baby Eric. Fighting!!!


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