Update

On Wednesday, while in the ED for chest pain (more on that later), I received a phonecall from my oncologist. Literally, I just got unhooked from my EKG. I told her I was in the emergency department at strong, and she was sorry to hear that, but then asked, “do you want to talk about your scan now? I mean, will that upset you?” And I said “I don’t know, you tell me!” 
It did not upset me. It’s by far the best lookin’ scan I’ve had since November, when this whole mess began. Prior ct reports have consistently read “innummerable pulmonary nodules ranging from 5mm to 2 cm”; Tuesday’s scan actually had a number, and they are all “itty bitty” according to Dr. Shayne. Like pin prick small. Like wouldn’t-show-up-on-a-PET-scan small. 

I don’t have words to describe how this feels, really. So I’m just trying to soak it up. ๐ŸŒž๐ŸŒบ๐ŸŒป

Thank you to everyone who has walked behind me and beside me through this journey. Every text, every phonecall, every happy surprise visit… your support really means the world to me. ๐Ÿ’•
More on my ED adventure to come….

Scan day/ Happy Birthday, Grandma Jo Ellen Mancari

I had a scan this morning at Strong’s new imaging building, which is really more like a hotel than a medical building. I first walked into a comfortable lobby with high ceilings, an electric fireplace, large tv screens, a set up for assorted coffees and teas. Very quiet, and almost peaceful. Well, as peaceful as a medical facility can be….

I arrived feeling very calm, and very very loved and supported (Thank you to everyone who sent me some love last night/ today!). Interestingly, I am still feeling peaceful, though the waiting (til Thursday) SUCKS. 

The man at the front desk looked familiar to me. After a couple of “what’s-your-date -of-birth?” type-questions, he told me that I looked very familiar. We laughed when we realized that it was from the hospital, as he used to check me in over there. He handed me the usual paperwork that has me answer questions like why are you here?(why not?) what type of scan are you here for? (Ct of chest, abdomen, and pelvis) Why? (Because I have ductal breast cells in my lungs) When was your last menstrual period? (10/25/16, enjoyed at the psych unit at RGH), any chance of pregnancy? (HA!) etc etc. 

A tech came out moments after I began my paperwork and brought me into a room in the back, decked out with a fancy large screen tv mounted on the wall. This is where my port gets accessed?, I thought. Looked more like a room at the Woodcliff. (K not really but you get what I’m sayin’, the place was spiffy). 

After the 20 minute ordeal that is known as power-port accessing, I was free to watch a bit of a cooking show. About 8 minutes into it (they were making savory pastries ๐Ÿ˜-holy butter, batman, tho๐Ÿ™ƒ), I was called in for my scan. I got on the table, and was told that my shorts needed to get a little lower (dumb metal buttons). First, they took pictures without the iv contrast to get a baseline, and then several images with the iv contrast (the kind that causes the warm, flushed feeling all over. I always feel as if I’ve just peed myself), which highlights any potential problems. I’m laying in the machine with my arms over head (flashy ct pose ๐Ÿ’๐Ÿผ), when all of a sudden, I get hit with the sneezes. One after the other, as the machine whirs around me, telling me to breathe and hold my breath…. I sneezed about 10 times. When the tech came back in, I was convinced he was going to say we needed to get more images, because my sneezing messed it all up. Not the case. He came in to tell me I could pull up my pants, and that I was all set! 

Pulling out of the parking lot and onto East river road, a yellow butterfly circled around my moms car. 

Hello to you, too aunt Mary. And hi Janet! And happy birthday, Grandma Jo. ๐Ÿ’•๐Ÿ’๐Ÿ•Š3 angels who are rooting for me on the other sideโœจ

Fat tears

I have not had a good ugly cry in a while. And I have a feeling it will be happening soon. 

Possibly tonight. 
I am exhausted. Since my diagnosis (2016), I have yet to sleep through a single night (minus nights in the hospital after surgery). I wake up multiple times each night, sometimes from hot flashes, sometimes from terrifying dreams where I am literally startled awake, sometimes just to pee. Most nights upon waking, I make my way to the fridge. I eat blueberries (sometimes a whole pint. I’m not kidding), sometimes some almonds, ocassionally dark chocolate (last night. Oops). And then I go back to bed thinking how terrible it was that I ate at 2 in the morning, and what that most be doing to my IGF-1 levels, and how disgusting I am, and how I’ll always be “fat” because I have no “self control”, and on and on. And at 2 or 3 in the morning, I don’t have the clarity of mind to talk myself down from that place. So then I somehow fall back asleep (though not necessarily quickly),  and wake up the following hour. Sometimes I stay in bed after the initial awakening. Sometimes I get up and go to the living room and try to read. But I hear the cupboards taunting me from the room next door. Some nights I feel so terrible about it all that I just cry. 
The real issue here is…. well, there are several. Let’s start with number 1. 

I need to sleep. 

Sleep is very important. We hear it all the time. It’s the bodies chance to repair and restore. If you’re not sleeping, you’re not repairing or restoring. 

When I wake up during the night, I’m often pissed, shaken, sad (and sometimes actually hungry, but most of the time, not really). So I go to the fridge. Because rather than sit with the feelings, I am looking for a distraction, a diversion. So the impulse to consult the refridgerator makes a lot of sense, but the problem is it leads to regret, self loathing, and SHAME (this is problem number 2). 

Typing this out has been difficult for me because I feel a tremendous amount of shame around my night-eating. I feel shame for the “you have cancer and you’re fucking up your hormone levels so if you die soon it will be all your fault” reason (that’s issue number 3). And shame for the “normal” American female reasons (they might be common/ nearly universal, but they’re not healthy). 

The stuff with food and weight still plagues me. In some ways, it’s comforting to have some things carry over from my previous life. In other ways, I’d rather not deal with the food stuff at all and just eat like a normal human being. 

Since I have not had adequate sleep in year, and since I am on drugs that shut down my ovaries and stop my body from making estrogen, and since I can never have children, and since I statistically may not make it to 30, it is really no wonder that I am a fucking moody wench. 

I forget all of this, probably because I’m adjusting to this new life… 

(But fuck statistics, seriously). 

I need to cry. I can feel heavyness resting on my chest, and that needs to be released. Sometimes, I think it’s okay to throw yourself the pity party, as long as you don’t stay in the party hat too long. (Or eat the cake at 3 am) (whatever that means). 
Edit: or, you could puke in a neighbors driveway (not your own, of course) after a run in 85 degree weather. That’s a release, too. ๐Ÿ‘๐Ÿป๐Ÿ’ช๐Ÿผ

My eyes are watering

I was chopping onions for a nice spicy lentil daal for my friend Stephen and I, listening (my back was turned) to some reporter and interviewee on tv discussing the importance of health care proxy, advanced directive, financial planning, “because we just don’t know when a health event will occur”. My impulse was to march over and change the channel because like, not today, please…. I’ve been feeling so happy. But I didn’t. I stayed with it. I cried. (And not just from the onions).

I have been resisting the health care proxy thing since the inception of my terminal diagnosis. 

Fuck “terminal”, that isn’t how I feel. 

But how do I feel? 

For now, we’ll go with confused, sad, angry, happy, pissed, joyful, grateful, devastated, angsty, scared, vibrant, dull, and like I could eat tater tots for days.

I think about death often. As a person who spent much of her 20’s feeling passively suicidal, my thoughts about death are a bit different now (I will post about this next, there’s a draft I’m working on now). Will I fill out my healthcare proxy this week? Probably not. I’ve got some emotional roadblocks that must be worked around/through in order to do that. 

What I will say is this: when I’m on my way out, I know where I want to be, and who I want to be there. 

I want shamanism to be a part of my transition (Dr. Londorf and Dr. Graber). I want acupuncture to help with pain and discomfort (along with allopathic medicine). I want to die at home in my own bed in my own room with my own sounds and smells and familiar sights. I want the overture of Traviata played frequently, along with Berlioz’s “nuit detรฉs”, and Debussy’s “en sourdine”, “Claire de lune”(vocal), and “nuit d’e toiles”, preferably all sung by Elly Ameling. I want good counselors in place for my closest loved ones. 

All of this from chopping onions ๐Ÿ˜‰

Two tears fell into the simmering pan. 
This will be one authentic meal. 

“Meditation” on the clouds

I stormed in the door hot and dripping with  sweat from my slower-than-normal- 3 mile run with my unruly dog, and my unrulier thoughts, and announced in an icy tone to my mother that I was in a terrible mood. She asked what she could do, and I shot back hastily, my voice fraught with teenage angst,  “Nothing, I need my water and I’m going to sit outside.” I unleashed the dog, grabbed my bottle off the counter and the door slammed behind me (was that the wind, or did I just slam it?). I made my way to the back of the house and sat on an area of flatness I found amidst the slopes and slumps of my backyard.  The sky was forboding; a dark and heavy shade of grey tinged with dark blue, and the air had a sudden sharp coolness suggesting rain was in my immediate future. I didn’t care. The cloud straight above me was the darkest cloud in my view. How appropriate, I thought to myself.  I looked to either side of me; the right had lighter shades of grey, like someone smeared grey-blue dyed whipped-cream across that part of sky. I looked to my left and saw a similar picture, though the left looked slightly more defined and less hazy than the right side. I took a deep breath and decided to focus my attention to my breath, and to the clouds. As I breathed and took in the picture to my left, I was surprised to find several patches of cerulean blue amidst the light grey whipped-cream clouds (were these patches there all along?). 

It began to rain. Pour, actually. I was chilled, but a smile made its way to my lips.  I stayed present for a few more breaths before getting up from my place in the grass, thanking the sky for its mercy, and making my way back inside. 

Break the silenceย 

I have thought about blogging nearly a hundred times since my last post, and for one reason or another, it just wouldn’t actually happen. Until now. 

Truthfully, I felt intensely overwhelmed by the idea of updating this thing because so much has happened in a relatively short period of time-the question of where do I start?? would send me reeling so much that start, I would not…

Since my last post, I have gone from not-adjusted to this life as a person with metastatic cancer, to fairly well-adjusted (with some intense moods in between-I mean, I’m still me).

What’s been instrumental in facilitating this shift, you ask? (Maybe you’re not asking, maybe you don’t care at all!). So far, it’s been:

1. Support. 

My mom is incredible. As sturdy and dependable as the ground beneath us, as giving as Shel Silverstein’s tree. We might not always like each other, but I hope she knows how strong my love for her is. I’m lucky to have such a ferocious advocate as my mom and friend. 

My dad always can divert my attention with a lengthy scrabble game or a good pun. He is resourceful and inquisitive and loving. 

My aunts, uncles, and cousins have supported me in different ways through out this experience, whether it’s sharing meals, crafting, going for walks, having meaningful conversation… each relative has shown me they care in their own special way and I am thankful for each of them.

(I believe in earlier on in my experience with cancer, I projected a lot of anger onto those around me who truly weren’t responsible for it. That’s the hard part about a cancer diagnosis: there’s no real place to put the angerno person, no external source, no one to blame… )

The nurses at Pluta cancer center are earth-angels. Boundless compassion and wisdom unmatched. I don’t have enough words so that’s all I’m saying. 

Old faithful friends. Friends that have stuck around and accepted me where I’m at, regardless of how much they’d probably like to slap me when I’m in those particularly crappy locations. I do not have a million friends. But the ones who have shown me their character and their love for me by sticking around (some didn’t, โœŒ๐Ÿป๏ธout, dollfaces) are as precious as the stars โœจ 

New friends. I have met some RIDICULOUS people in the last year. Good ridiculous. The best kind of ridiculous. I am so thankful. 

My dog. Riley is my most adored being on earth. Sorry, turtle doves. It’s just fact. She’s always there for a cuddle or a run. 

2. Integration of mental health and spirituality

I believe I am getting well in all regards, and I think this has to do with incorporating spirituality into my mental health recovery, as opposed to my compartmentalized approaches of the past. I am integrating what I am learning and experiencing with acupuncture, reiki, meditation, reciting the rosary (and other prayers) and other spiritual teachings and practices with concepts like mindfulness, radical acceptance, and other skills from CBT and DBT, and suddenly, the world makes more sense to me. The two worlds of mental health and spirituality seem inextricably linked to me now. Healing is spiritual…. (Almost like how the hell did I never see this before?)

By addressing my mental health, I am also addressing my spirituality, and vice-versa. I am doing a lot of painting lately as a mindfulness practice which makes me feel connected to source and altogether more centered. 


I want to share my latest thoughts on all of this but it’s 10:20 pm and I’m pooped so I’ll save it for another time… 

3. Being off chemotherapy. 

Pretty self explanitory.. chemo is a soul-suck. And a body-suck. It just suck-sucks.
I have so much more to say, but this was as good a start as any. โœจ๐Ÿ’•๐ŸŒž