bullet points

i’m not much in the mood for writing at the moment. but i know that i must, because i know that my last post scared the bejezus out of a lot of people, and there were still so many unanswered questions.  many, many things that have transpired in the four days (man, feels like four weeks) since i last posted.  i’m about to do an unprecedented thing here… straight up bullet points.

– biopsy results: melanoma. no surprises here. i have to admit to having felt relieved, for the simple fact that having another kind of cancer on top of the kind of cancer i’ve already been dealing with for five years just seemed like too much work. i’ve become fluent in melanoma, and not really interested in learning a whole new language. that said, melanoma sucks a fat one.

-mri results: no metastases in my brain. woot! had been also having pretty regular headaches along with all the other symptoms, so i was sweatin’ these results. i will take all the good news i can get right now.

-treatment: drug combo in the ‘targeted therapy’ family, which i qualify for because i carry the BRAF gene mutation. the drugs are called tafinlar (aka. dabrafenib) + mekinist (aka. trametinib), and i take them in pill form twice per day. i have already taken four doses. the good news is these drugs, if i respond to them (which i fkn better), can work very quickly… like within days. i’m hoping that the fact that i had no stomachache today for the first time in a week or two is a good sign. the not-so-good news is that, based on what i’ve read, a lot of people develop a resistance to these drugs after a while, meaning they stop working. that said, once we get these muh-fuggin tumors to stop growing, we can always switch back to the immuotherapy combo that i responded so well to last year.

treatment cost: holy shit. all of these drugs are sooooooo expensive. my new treatment costs about $20,000 per month. it is so sad and wrong how many thousands of people with melanoma are dying without a fighting chance because they don’t have access to the most effective treatments out there. i am in an extremely fortunate minority. and i feel that having government subsidized health insurance literally saving my life grants me the right to hop up on my soapbox for a moment and say…. please, please don’t vote trump or cruz into office this year. you will pretty much be killing me off.

side effects: oh, there’s a giant list that varying percentages of patients experience.  high fevers are the potential doozy. on that list are also warts and hair loss. not super psyched about the idea of those. i got off pretty light with the immunotherapy side effects, so…. (not gonna say it. at 41, i still believe in jinxes).

-lifestyle: not really all that compromised as of yet. just started a new part-time teaching job and i super love it, and hoping the side effects don’t compromise my ability to work. doing lots and lots of yoga to keep me both energized and balanced.  the one really tricky thing is being on three different types of medication that i can’t take at the same time, all of which i need to take on an empty stomach (just when strangely, ironically, my enjoyment of food has come back). hmmmmph….

-the feely stuff: actually, i feel good. i feel positive. i feel like me. i just have a new trajectory to adjust to.  i did cry through most of a ninety minute yoga class yesterday. but i needed to cry and it was really cathartic.  i have a lot of awesome people in my life and they (you) have all stepped up. so thanks.  the odds are stacked against me, but i believe in science, i believe in progress and i believe that i have lot of unfinished business. on the way to my last doctor’s appointment, i came up out of penn station and was greeted by a masssssive billboard bearing nyu’s new campaign logo: #inourlifetime.  i’m keeping faith that it’s gonna happen #inmylifetime.

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8 Responses to bullet points

  1. Thank you so much for the update. All my love ❤

    Liked by 1 person

  2. Joanne Cosenza says:

    Hi Jen, Thanks for the update. You are strong and I know you will kick its ass. Much love and hugs to you .

    Liked by 1 person

  3. mmwm says:

    I didn’t know how to respond to your previous post, except with Oh shit no, so I didn’t, still don’t know what to say. Just reminded of Liza (Levin)’s rollercoaster image, the hopes/fears rollercoaster, good news/bad news roller coaster, and her life continuing in the midst of it all, until it didn’t, which is the true, non-illusions case for all of us. I hope you don’t get warts.

    Liked by 1 person

  4. Sandra Porter says:

    Even though we haven’t met in person, because you are part of Dana’s ‘framily’, we feel like you’re part of ours too. ( Second cousin once removed perhaps?)
    Much positive energy being sent your way.

    Liked by 1 person

  5. Cindy Senzon says:

    I love you so incredibly much. You are so strong, You have always been my hero. I am here for you

    Like

  6. lydia8835 says:

    Jen, you are truly amazing. I’m proud to not only know you but also have a strong spiritual connection.
    Your writing talent is inspiring and you certainly live lessons that are so profitable for others to follow.
    Burt and I are rooting for you and sending all good energy your way.
    Just know that somewhere in South Florida there is a little old couple praying their butts off.
    All our love,
    Lydia and Burt

    Like

  7. Jen, you are in my thoughts and prayers. I haven’t been to yoga for the past week because I am having terrible allergies/asthma/bronchitis. It’s clearing up now but I still don’t feel strong enough to go back yet. I often cry in yoga class – it is very cathartic. I hope to see you soon in yoga. May you have a complete and speedy recovery.

    Liked by 1 person

  8. Sadie Mullin says:

    Jen was on to Conor and he thought I knew from facebook. Told me to add you which I will do. We travelled to Vietnam after the wedding and I did not check emails. You can still beat this, stay positive. Best wishes and blessings. Sadie

    Liked by 1 person

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