"In hospital. Day 2. The thing is beeping. The bathroom stinks"
I took a note in my phone on Friday, and I'm sorry, but my suffering is a little funny now that I'm feeling better...
I'm home today after 3 days at Brigham, sparked by me spiking a fever and generally feeling like I was dying. I won't recount the whole horror of Thursday but let's just say it involved me curled up in the fetal position shivering violently, slash sweating profusely, and yakking for the first time since I was 12. Had a little thing called neutropenia - ever heard of it? Don't bother, just know it's terrible.
It went from the nurse saying, "Oh, you don't feel well and have a little fever? Well, it might just be the chemo...this regimen is rough..." (and me hearing this, wishing I could throw myself off a cliff) to - an hour later, after getting my blood work back - getting rushed to a private room and later getting admitted to the hospital across the street.
After a strange night where I was woken up by nurses for vitals every couple hours, in the morning I found myself with a mask around my face and blankets up to my chin as they wheeled me in for a cat scan. If I haven't allowed myself to feel like a sickly sad sack individual to this point - congratulations you disgusting disease - mission accomplished.
Great news is that after three horrific days, I'm home on antibiotics and feel like a million bucks - better than I have in a month - and I'm insanely grateful for how I feel. When this is all said and done, I'll appreciate every settled stomach, every eyelash, every regular bowel movement, every goddamn strand of hair on my head, every run I'll have the strength to endure, each breath I can take without heart-pounding anxiety, and any thought centering around something other than this horror show, that will be behind me.
I know I have about 4 more weeks of feeling terrible. They say there's no way around it, to a degree; how I've tolerated it so far, weekly, is about how I'll tolerate it each time, only it's cumulative so mayyybe a little worse. Hopefully I don't pick up an infection like this last time and feel especially, dangerously terrible, and I can get through his time. But I feel almost angry now, indignant, like - you know what, I will get through this, because if I can endure those last three days I can endure anything. F*CK you.
Happy Breast Cancer Awareness Month, I guess.
PS: On a related note, someone posted about this and I feel the need to chime in - this mess isn't pink, by the way. It's more of a puke green or yellow or brown. Mustard if you will.
I'm well aware and you're well "aware" but make sure you're aware of the reality. Feel yourself up, get felt, up, and demand mammograms earlier if you have a strong family history and are worried and want a peace of mind. I feel like they've almost tinseled the whole breast cancer thing in pink to the point that people either think it's the "good one to have" (no, no it's not) or that we'll all be fine and dandy (no, not necessarily, we won't) and all this "fighting" and "battle cries" and "warriors" kind of turns people off at this point. And I cringe at that words too. We're just dealing with what we're faced with. Not always with a fighting spirit or dignity. Not always.
PPS: I'm also forever grateful for Mike who posted up beside me in what looked like an airplane bed for 3 days, watching Man in High Castle with me and likely trying not to vomit at the state of my gastrointestinal system, and to my best friends B + H for stopping by with pizza and pumpkin cinnamon buns, respectively, and distracting me from everything for an hour or two. I love you.
So I'm 80 apparently and I finally got Snapchat and it got me through 7 hours at Dana-Farber yesterday and also!! Since that little fuzz on my head will be gone in a few days due to the resumption of chemo, here's an absurdly filtered photo with glorious eye lashes (that I don't currently have) and a last look at that blessed half inch of hair.
More? Welcome to creepy town.
It dawned on me that I’m coming up on 6 months since calling the doctor about a little tiny bump, setting off this shitstorm of events that led me to now.
I wish I had a milestone moment, or at least some happy little wisecrack to share, and I wanted to - I keep wanting to - but it wouldn’t be genuine, and so what’s the point of pretending. I notice I'm getting fewer "I read your blog it's so funny!" Or even, "I read your blog!" And this is understandably due to the Eeyore-inspired posts I've been shooting off into the ether about my mom getting her head cut open and my boob getting a little teeny chunk cut out of it (both of which were successful, yay!) along with the dumpster of emotions that have been coursing through my hormone-altered body.
But the bottom line is that I'm still adjusting and it's not necessarily easier. Actually - it's harder. I take all the complaints from the first 3 months of treatment back, because these last two weeks make those early days look as easy as making Miss Savage cry in 7th grade. (I.e.=REALLY EASY). Poor lady.
Six months in, battling a cold on a Sunday, I am officially in bed, on Day 9 of my first AC dose, sick and idle and binge-watching Bloodline. And as I watch it, and as the screen goes dark between scenes, I catch my reflection. It looks like a floating baby bobble head. Six months in. Six months! And my breath still catches and I frown at myself and I'm taken aback by how alien I look. Again and again and again I do this, in mirrors and other reflective surfaces. Again and again and again.
Plus I worry, worry, worry. Will I ever calm the fuck down? Will I forget? Will this whole thing be a trauma, like the pain of childbirth, forgotten and inaccessible, so I won't really remember how brutal some days were?
I suppose you could look at how I'm handling all of this, six months in, as a regression, surely you’d think so if you listened to me in my darkest moments talking to my therapist about my despair and my hopelessness, as my back is spasming from the Neulasta shot and my stomach feels like it’s in my throat and my hormones are haywire - but that’s not the case exactly. I haven’t regressed. I’m just in the thick of it right now. The thickest thick. And it’s hard to accept that, when I've got six months behind me. For me at least. I want to be “almost done.” I want to be on the other side.
So here I go, again, ending a post with sort of a positive spin on things, praying the poison I get tomorrow doesn't lay me out like the first one did. But even if it does? Guess what motherfuckers - it's 2 down 2 to go. HALF DONE.
That's a milestone.
Before my first treatment the other day at Dana-Farber, Mike and I walked over from Brigham where I'd had an echocardiogram, a test to make sure my heart could withstand the beating from one of the new drugs.
Before entering the Dana building, my legs just didn't want to move forward. I was overcome with sadness. I broke down bawling and said to Mike, "I'm finally feeling good. I'm finally feeling healthy. And now it's just going to all go away again." We had to sit down on a bench. I couldn't even see through my tears.
And now, a few days later, I wish I could say it wasn't as bad as I'd thought. I wish I could say I'm toughing through it, but it's been hard. I've felt disgusting and tired and achy, all the things I was worried I would feel.
The first treatment round of treatment, in May, was easier. I had uncertainties and worry, but eclipsing those feelings were hope and resolve. The sun was shining and days were long...the doses weren't as harsh or high dose.
This new stuff, man. This new stuff, it makes me feel like I’m arrested in a hangover coma, but without the assurance that it will pass or that a tylenol or a nap will help.
And it makes me angry. What a wicked shitbox of shit we have to go through. A couple people have said to me, since I was diagnosed, something along the lines of, "Hey, at least it's breast cancer and they can treat that - at least it's a 'good' kind of cancer." And I see how in some ways it's viewed as such - all that money and attention and pink vomit thrown all over it - but in reality, it's far from over or cured. The fact is the cases are getting younger and the cases aren’t slowing and chemo is still oftentimes the only sick, disgusting answer to it. Sometimes -- and I know there have been advances and everything -- but sometimes I just think the most they’ve figured out is how to alleviate the side effects of the treatment itself. They know what to prescribe to cut the awfulness. And it's still pretty awful. But there’s still no cure, there’s no total eradication. Still.
Even though these drugs are saving my life I hate them so much. It makes me ill to imagine them inside me. I can see it in my red-tinged pee in the toilet, and I can feel it in random neck pains and back pains.
My friends mucked through the leftover wet rain on Sunday to walk in pink shirts and I’m forever grateful and forever guilty that I was too sick to even muster the energy to meet them afterwards. I despise feeling this way. Truly. I hate that I had to leave my cousin’s wedding at 8pm. I hate that I can’t enjoy things like I used to. I hate that I look around and I feel so different and weird and everyone who looks at me looks at me differently no matter how much they say they don’t. They’re waiting for my puffy chemo face, they’re waiting for sickness to set in, for it to be manifested somehow, and I hide under my wig and line my lashless eyes and refuse to show how sick I feel if I can help it. I just refuse. Call me weak or vain or for not “showing the truth.” I don’t care.
They say tomorrow, or maybe the next day "after days 3-5," I will start to feel better. I know there are far worse things in life and that I'm lucky in so many other ways: Mike, Lily, our new home, my job, my family, and my unbelievable friends. I have remember to cling to those things, as they are life. They are life.