A Cancer-y Few Weeks

It’s been a long time since I’ve been able to write my feelings, check in with folks, or really do anything besides go to work, go home, and go to sleep. My new job has been truly wonderful, and I’m so happy. But I’m tired, y’all. To be honest, things have been pretty cancer-y lately.

Here are some updates: I had brain radiation again on October 6. My radiologist said it went very well and that I’m very good at keeping still for over an hour. Yay me. They treated four small tumors. We’ll see in December with another MRI how that treatment went, but all is expected to go well just like last time. More little spots may turn up, but this zapping thing works pretty well on them.

Since radiation, I’ve been feeling very fatigued. I’ve been sick to my stomach much of the time. I have a very weird and fickle appetite. And things have generally been a little bit off. So it wasn’t a huge surprise to me when the results of my PET scan this week showed that my BRAF inhibitor treatment (the stuff that’s been doing such a great job taking care of the cancer in the rest of my body) has stopped working as well. Rather than continued shrinkage, most of the cancer in my body has remained the same. Most importantly, the cancer in my liver is getting worse.

So, it’s that time — I’m going to switch to immunotherapy treatment.

I’ve been excited and confident about this new, promising treatment from the very beginning, so I feel great about starting this. I won’t have to take so many pills. I won’t get horrible fevers anymore. And everything in the universe has been telling me that this treatment is going to be great for me. This keeps me smiling through the pains in my abdomen and the beginnings of my radiation hair loss. I have a really great option that so many haven’t had.

When my tumors were shrinking, I almost had a sense of things getting back to normal. Cancer was more of an annoyance that interfered with my life by way of appointments during work hours and planning my meal times around my meds. But after my second radiation and this last scan, the fear has creeped back. It was always there, lurking in the background, but now it’s ever-present in my conscious mind again. Yes, I fear death from this disease. I remain positive, and I have such strong conviction that this new treatment will work for me. So many things that I can’t quite explain logically make me feel very certain of this. But the fear is still there. Hard to avoid it, given all the scary things broadcast about cancer everywhere you turn. But the thing is, cancer has angered me. I watched other kinds of cancer take two of my very favorite people in the world. And here it is, come for me. And that isn’t OK. Cancer can’t do this to my parents. It can’t do this to my family that has been through the hard parts of this before and who have been there praying and supporting with everything they have. So I’m pretty pissed off that it thinks this is an acceptable time to be messing with us. And I’m not someone you want to piss off. So cancer, LEAVE MY FAMILY ALONE. And leave my body alone. I’m exhausted, and you’ve overstayed your un-welcome.


A Piece of Cake

I had an MRI on Thursday, and I got some really good news and some not as good news.

The tumor in my brain that was treated with radiation responded wonderfully to the treatment. It is smaller and no longer an active tumor. I am so thankful for this great success.

But, the MRI showed two other spots that now need to be treated. One was so so so small on my last scan that they couldn’t even say it was melanoma, but now it’s a little bigger (still teeny tiny) and discernible, so it needs to be addressed. There is a second spot they did not see on either previous scan that’s technically too small to know what it is for sure (just like this other one was before), but they’re assuming it should be treated as well.

I told the doctors that the first radiation treatment was a piece of cake. My radiologist said that since I responded so well to spot radiation the first time, and since we’re on top of catching these things when they’re tiny, the next treatment should be just as effective and easy. And then he gave me an actual piece of birthday cake. Thank God for cake.

Yes, this disrupts my life a little bit again. But really only a little bit. The thing about living in New York City is that you get a fresh dose of perspective about every five minutes. My mom and I went straight from my appointment to Luzzo’s to stuff our faces with my favorite pizza. I cried a little bit, and I laughed a lot. On our way back to the subway station, it was raining, and I offhandedly said, “oh, man, these tennis shoes aren’t great for the rain. Look, my toes are already soaked.” A minute later we came upon a man sitting on the street in the downpour, homeless and holding a sign asking for help. He wasn’t wearing any shoes.

My life is unbelievably easy. I found out I have the tiniest bit of new cancer, and people gave me pizza and cake. I’ll be just fine.

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I Love to Laugh

I honestly think it’s the thing I like most, to laugh. It cures a multitude of ills. – Audrey Hepburn

Funny people are always my favorite people. I love comedies, and I love laughing. Growing up I laughed easily at everything. Even things that weren’t really that funny, I’d burst into a fit of giggles and not be able to stop. I was a great ego boost for my comedian friends, I’m sure.

We all get more serious as we grow up, and we laugh less, I think. I want to seek out more laughter. I have no doubt it is good for the soul and the body. At my wellness group, we have talked about the healing power of laughter. Indeed, Cancer Treatment Centers of America points to growing research suggesting that laughter may have therapeutic value for cancer patients. There’s even laughter therapy and laughter yoga for cancer. All of this is right up my alley because laughter is decidedly positive.

So, I’m taking recommendations. Funny books, movies, shows, stand up – I’m open. Tell me what makes you laugh.

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Yesterday I had coffee with an amazing writer with a very similar melanoma story. I was so fortunate to be able to meet and talk with this person, and she made me feel incredibly supported and positive. I was actually holding back tears of joy on my way home, feeling so immensely lucky that I have kind, generous people lifting me up, even someone who had just met me. And, in particular, the value of being able to talk to someone who understands what I’m going through, who has very much “been there,” is immeasurable. I go to a weekly wellness group at Gilda’s Club and talk with a wonderful group of women, all dealing with cancer, and the ways in which we can support each other just by sharing and understanding this experience is so special and meaningful.

Sometimes when I think about this, I feel twinges of regret. Having more of an understanding of what it is like to go through this, I feel like when my aunt Mona was going through it, I didn’t do as much as I could have. I could have made her feel more supported. I could have talked to her more about it. I could have called more. I could have just checked in and talked about mundane things. I could have asked her more about what she was going through and how it felt. Sometimes I wasn’t sure what the right thing to say would be, so I stayed silent. That was such a mistake. I wish I had told her every day that I loved her, was in awe of her, and was there for her, whatever she needed. I wish I had been warmer.

I know not to dwell on what I cannot change. And I know that she knows. What I take from it is that I want as few regrets as possible. And that means being more emotionally expressive, being more loving, and making sure people know just how much I care. And I will work to do that, because nothing could be more worthwhile.

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Thanks RBG

My love for the Notorious RBG is no secret. Besides her legacy and general wonderfulness, I admire her tenacity and perseverance. She has overcome several incidents of cancer-related adversity, and it has only strengthened her resolve to work hard and do what is right. I recently came across this quote that resonates so much with me right now:

“So often in life the things you regard as an impediment turn out to be great, good fortune.” – Ruth Bader Ginsburg

Thank you, RBG, for reminding me of the great strength we have to turn our difficulties into opportunities.

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My Team

This morning I got to see my doctor and care team before they ran a Melanoma Research Fund 5K right outside my window.

My care team

I have the best people imaginable taking care of me. I’m fortunate to have a doctor who is both brilliant and compassionate. My nurse is always on top of everything and very helpful and kind. When I have an appointment, everyone goes out of their way to make me feel like I matter. And they’re the kind of people who do a melanoma run on the weekend. They’re pretty great.

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My Cancer is Shrinking

Yesterday I got the results of my PET scan, and in the words of my doctor, the scan was “excellent.”

I have had decrease in size and/or decrease in melanoma activity everywhere. When going through my scan with me, my doctor showed me the decrease in activity in my pulmonary tumor in particular and said the difference since June was “huge.”

My pills are working. And now I have concrete evidence that shows I’m getting so much better. This is the best news I could have hoped for.

To celebrate, my mom and I went to Serendipity and I got a caramel hot fudge sundae as big as my face:


Thank you so much everybody for all your prayers and support. It’s meant so much and gotten me so far.

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My Performance

I’ve always been a performer, ever since I was little. I craved attention, still do. Dancing, singing, putting on a show — it just came naturally. But not just onstage. I’m a performer in everyday life. It’s not on purpose exactly. I think we all do this to some extent, but I know mine is quite a lot. My family and close friends could probably tell you that they can see the switch flip when I’m “on.” I’m at least self-aware about this.

It’s not that I’m being fake. I’m just presenting as being in my best state. It is subconsciously done. I don’t even think about what I’m doing — when it’s time, I’m just on.

Part of this must come from my desire to manifest positivity, which I think is of utmost importance. It makes me feel happier and more in control. But the rest of it, I have no idea. I think most people have a fear of vulnerability, so that may play into it. But it honestly comes so naturally that really don’t know why it’s my go-to. I certainly don’t feel like I have to act like I feel good all the time (so save me the lecture). I just do.

To be clear: I am good. I am emotionally doing pretty well, and a lot of the time I do feel good. But some of the time I physically do not. Especially lately, I sometimes feel very fatigued. But when I’m on, I don’t act like I’m tired. By all appearances, I’m normal. And I just go.

I don’t know the point exactly of sharing this; I suppose it’s just an observation. I’m unclear on the “why” (and sometimes on the “how,” to be honest), but I know that it’s what I do, and it probably won’t change significantly. Maybe I want people to know that I do get tired and I do have bad days, and you may not see it. But I’m sure that’s true for a lot of people. And we’re just going. And whatever way we choose to handle it, that’s OK.

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Pills, Pills, Pills

On a normal day, I take at least 8 pills. Four in the morning, four at night. Inhibitors (for the cancer), a steroid, and my regular anti-depressant and birth control. I’m prescribed numerous other pills to take on an as needed basis, including pain meds and manna from heaven that comes in the form of a tiny dissolving pill called Zofran. Thank you God for the sweet relief of Zofran. Plus, since five of the lovely little daily pills tend to bring on fevers from time to time, I’m also getting very well acquainted with Advil and Tylenol.

I used to be bad at remembering to take pills. Now I’m very good at remembering. These pills take up so much of my head space — how are you going to forget to take meds that you pray every day are saving your life?

It might seem like a pain to have to take so much medication per day. But I am so, so happy to take these pills. These $18,000-per-month pills that cost me the most minute fraction of that because I’m fortunate enough to have good insurance. I’m even happy when I start to get joint pain that makes it hard to bend my knees or use my feet. I’m OK with being tired. As much as the fevers can knock me out sometimes, I’m even fine with those. Hooray for side effects! OK, maybe on Saturday when I was curled up in bed shivering and sobbing from fever chills and actually crawled to my shower just to try to get warm … maybe at that moment I wasn’t cheering for the fevers. But these are things I can handle. When it comes down to it, I’m just glad the medicine is doing something inside me.

Today they’ll put me back in a big machine to see just what that “something inside me” has been. And tomorrow I’ll know if my doctor thinks these drugs are working well enough to keep going or if he thinks we should switch to immunotherapy treatment. I don’t really know how I’m supposed to feel going into this PET scan other than that I really hope my tumors have shrunk. That’s the best I can hope for, so there it is. It feels weird to vocalize, like maybe you don’t say that right beforehand so you don’t jinx it or ask too much or something — but that’s what I want. I want to be getting better.