Its been 2.5 weeks since that last poison supplement and I'm feeling about 95% myself. And with this absence of illness and overall weakness -- no longer do I huff and puff from the driver's seat to the front door -- comes overwhelming relief and gratitude, plus this strange background thought - did all that shit really happen?
It is such a drastic improvement that the only glaring, immediate reminder of that horror is the lack of hair on my head. I had a month or so period where it started to grow back, in October, during my surgery recovery. (That's where the Eleven for Halloween came from). But it started falling out again a couple weeks ago, and now there are large qaudrants that are white as snow and smaller ones where small hairs cling like pathetic burrs. I look ridiculous.
I wish I could bask in my newfound wellness, and I am, I really am, but I can't help it - the hair thing. It hasn't bothered me less over time. I'm at this point immensely sick of it.
I look with disgust at my wig collection, cursing them while I urge the hair on my head to grow, grow, grow. And this is a little TMI (but we're beyond that, aren't we?): I don't look for indication of growth on my head. I actually look south. Because I learned from that period in October what the growth indicator is, and that, my friends, is my nether regions. So every morning I take a little looksee down there. Nothing yet.
This next bit is for my fellow sufferers. I mentioned in an earlier post how I'm leery of my wandering mind and how I'll handle anxiety and errant thoughts of doom and gloom. I decided to do something about it to give me some sense of control, and there are 2 organizations I came upon.
The first is through Livestrong. They partner with YMCAs across the country to offer a 12-week long (small) exercise class for those who have gone through cancer treatment. It's an opportunity to regain strength, flexibility, and endurance. And it's perfect for someone like me who needs some guidance, encouragement, and understanding - and mostly structure, to get back in the game. It's free. (There's a big chance I have 80 year old dudes doing hammer curls with me - but more the merrier, and maybe I'll make a friend or two!)
YMCA / Livestrong link
The second organization I reached out to - at my social worker's suggestion - is Bodhi Mind and Spirit, a yoga nonprofit geared specifically toward women who have had breast cancer. They come to your home and offer 1:1 yoga instruction along with mindfulness. This is also free, and by donation. I plan to donate. I know they go as far north as Vermont and serve all of MA.
I greatly appreciate this home yoga concept because a) I'm scared of germs at a yoga studio and b) to be honest I've been incredibly self-conscious and scared of going to a yoga studio in my new town. I can't wear a hat when inserting my forehead on a mat, so I'd meet people bald. I've been planning on embarking on my "let's meet new people" stint when I'm all done with this shit and that's not till spring. I don't want to wait that long to get back into yoga. I know I could grow a pair and suck it up and just meet people and be me!! But guess what? This is not me! Cancer is not me. Fuck cancer. Truly. It's not me.
Anywho, I'll report back on the effectiveness of these programs, both of which start in January - when I'm done with my 6 weeks of radiation (which is 5 days a week). Forgot to mention I'm "mapped" - meaning they know where to point the laser beam on me via tiny tattoo dots on my chest). I love that I forgot to mention that, it means my mind is on other things.
In the meantime - grow grow grow!!
In the beginning of all this I felt a need to capture my thoughts and encapsulate how I was feeling and get it down on paper. But lately I've struggled to write or even reflect. I've been obstructed. To be honest, I've been a complete basketcase.
People kindly say to me, "But you're allowed!" and "Of course you feel this way" and, "I can't even imagine what you're going through..."
(Okay. First. There's advice floating around that I've seen, like 'What say to to sick/grieving people" or whatever. I read once that you're supposed to say just that: "I can't even imagine what you're going through" because you shouldn't presume to know what anyone is going through. Damn though, that makes me feel so lonely. You can't even imagine? My life is that horrible that it's unimaginable? Man. I know people don't mean that per se, but it stings.)
Anyway, back to being a basketcase: I had panic attack (number 3? I can't keep track), yesterday at work. What sparked it? Well, first, news that our company founder died of cancer the day before...and...wait. Let's be more honest. It wasn't just that, it was something benign, something silly that set me off. Per usual.
It was the afternoon, when my general feeling of crappiness/malaise was starting to take over (as this is around the time my fatigue sets in), and a greasy-haired visiting sales rep pressured me to leave my safe little desk space and sit in on a needless training in a conference room full of people. When I arrived there were no chairs. I wandered back and forth at the back of the room, overly conscious of my stupid wig and hat and fending off stares from sales girls from the stores. I don't know any of them, but they likely know about me, the girl with cancer in the stupid hat, creeping around the back of the room pretending to be interested in the swath of pickles that had been sitting out for 6 hours. They had on sweater dresses and their hair was shiny. There was still nowhere to sit. Then a guy tried way too hard to get me a chair, floundering, apologizing. More stares. Suddenly, I had to get the FUCK out of there.
My lovely boss calmed me down (but I'm so embarrassed) and I left work early and arrived home with my puffy face and my stupid hat and cried some more.
Then I saw something funny on Instagram or something, and I laughed, belly laughed, and remembered that I used to have a little spark of wit inside me. That I used to give a snarky side eye to people and things that amused me. That I used to write and infuse situations with humor instead of gloom. Where did she go?
I've come to the conclusion that I have 2 issues that are preventing me from feeling like myself. One is that my body is so ruined and run down at this point, that I can't properly exercise. I can't run. A jog for a few seconds sends my heart thwacking against my chest as if I've just sprinted a mile, I get dizzy, and my legs are rubber. This is due to my low red blood cell count, and my body going into overdrive against this potent chemo that is still making its way through my body. So, I walk. And walking does help. But...it doesn't replace a long, head-clearing run. I can't go to the gym, either, because of all the germs. So, that's reason number 1 why I've been going a little mental.
Reason number 2 is that I've become obsessed with who I'll be "after" this. In my fruitless anticipation of what's to come, I go on the Internet and I read articles about how the year after treatment is "even harder" emotionally (just fucking great!). They say after the doctors are done checking on you so closely, you're left to fend for yourself, and it's scary, and before you know it, you've hop skipped and jumped onto a whole other sad, angst-ridden existence. To be fair, I think this is backlash, or an alternative to the "survivor" and the "cancer warrior" narrative. Basically, you're tired as all get out from 9 months of treatments and your body isn't the same, and you have what is essentially PTSD, but then all that inconvenient mess is swept under the rug and you're supposed to be a pink basket of sunshine cancer thriver warrior? I don't think so.
Long story short with issue #2, I need to stop searching this stuff out online and trust that I'll heal and have a better outlook. Like really, though. I need to stop Googling.
Okay, so I wrote all that stuff above yesterday. I didn't even want to post it because it seemed, once again, gloomy. I kept it on my notepad on my computer.
But TODAY, I went out this morning with Lily and walked in the woods. Tried to jog-walk-jog-walk, like I've been trying (and failing) to do for 2 months. And TODAY - I was able to jog for at least a minute at a time. And I didn't feel woozy or like my heart was going to rip through my chest. I was tired, but not SPENT. And as Lily pitter-pattered behind me (she's always right behind me, or on top of me; that dog is my savior), I looked down at her, and looked at the trail ahead - and I just knew. I knew that I will get stronger and stronger every day. I will allow myself panic attacks. I can get mad at sales reps with shiny hair and sweater dresses. And I will stop reading dire shit on the Internet. (Really, I will this time).
When I got back from the walk/jog/walk, the first song that came on Pandora was Brand New Day by Van the Man. Every day IS a brand new day, isn't it. Just ask Lily, she's always freaking happy.
Tomorrow is my last treatment of chemo, hopefully forever. (I'm superstitious, so you bet your sweet ass I will knock on wood about that.) I’m not totally done, but this is what I’m thinking I'll strive for: I want to salve the mental scars that will surely remain for the rest of my life with a calming mantra: you did the most you could, and you’re still fucking here.
The next couple months I’ll see more boob-baring treatments (radiation, tamoxifin, herceptin). That means more robes, more pokes, more “Name and birthday please?” - a phrase repeated so often during my appointments over the last seven months that I hear it in my nightmares.
I will be ecstatic to have the chemo, that red devil of poison, far, far away from my veins and my pee and my little eyebrow hairs that fall down onto my cheek.
In the beginning, when the landscape of my treatment seemed far off, and oh-so-do-able, when the summer sun was shining, when I had a lot of visitors, when I had armies of people behind me and sending me cards and offering support and gifts and food, I stated that I was grateful this happened to me.
I want to alter that statement. As time has worn on - crawled on - and I’m still in treatment, and I've faced my mom’s brain surgery a week before my own surgery, and as I've seen my resolve weaken and at times plummet into a dark, dark abyss, here's my revised take: I’m not all butterflies-and-rainbows thankful for this awful, awful disease. Could have done without it, actually, thanks.
But I am thankful for my life, of course. I believe my relationship with Mike has strengthened to an awesome degree. My relationships with my friends have ascended to the highest levels of lady love. You truly see the good in people. You also see who kind of toddles off from you - It's like, see ya later! nothing to see here!...and you’re like, really? But you learn you can’t hold it against them, and that everyone’s different, and like, honestly? Whatever. It’s not worth it to sweat it. I definitely have noticed that I don’t get as “jazzed” (as Mike would say) about people or things I can’t control, and yada yada.
To sum up, I’m not out of the woods, the next couple weeks will be pukey but hopefully won’t land me in the hospital again - but after that…after that?! It’s on. Even my superstitious and realism-seeking self won't be able to deny how glad I'll be to be done with the poison. And closer to fully accepting that all that matters is that I'm still fucking here.
I've been living in a disaffected fog. I'm willing the days to pass with as little pain, as little nausea, as little worry as possible. I went out to my car yesterday at work and just stared into space, feeling not much of anything. I tried to cry but couldn't. I tried to talk to someone - my dad, God, the universe, but felt no one there. I went back into work after housing a bagel - which settled my stomach, as only carbs have been doing - and spoke to no one. Just stared at my computer screen, willing 3:30 to turn into 5. In a work setting, or anywhere that anyone knows what's going on, it's hard trying to act like I'm okay, that I'm handling everything fine, that I'm still feeling positive. It's hard. It's all so much harder than I gave this disease credit for.
I have 9 days left until the last treatment. Let's say 16 days until I start to feel better after that. It's hard to imagine what it will be like. I read somewhere, someone describing how they feel after chemo: "like I'm buried in insecticide." That's how I feel.
I forget how it feels to be enmeshed in my old interests, in my life. Running, working out, loving Mike to my best ability, writing, my dreams, even just carrying on normal conversation, none of it has been possible for some time now. I look at Facebook, at everyone's live's storming ahead, and I'm dumbfounded. What is that like? I can't even read. My mind wanders off...to no where good. I'm exhausted. Recurrence, death, sickness, loneliness, paranoia. That's what is on my brain, with short bouts of hope, or distraction, in between.
I can't mask this. I'm having a terribly rough time. One left. Then I hope the fog lifts, and I can feel joy again. It will be indescribable, I think. It will be unlike anything I've ever experienced.