Very brief update – good news!

I am running out the door in five minutes but in the briefest of updates:

Well first of all it’s kind of snowing? On March 23rd? In Seattle? We all know climate change is a hoax, tho.

Saw the ENT and turns out the “mole” in my ear was just a scab from a spontaneous bleed in my ear canal. Which sounds terrible but the ENT says it happens – the ear canal is the only place in the body where skin is adhered directly to bone. So I’m to go back into two weeks for a checkup but looks harmless!

Got an ultrasound yesterday and the doc said everything looked super normal – no thickening of my endometrium, no polyps or cysts, AND – get this – my ovaries appear to be activating…?!??!? She saw active follicles in there. OMG IF MY BODY NORMALIZES I WILL HAVE A PARTY TO CELEBRATE. You would come to my ovary party, right?

Gotta run but I know that all your thoughts and prayers both got me through this AND helped out with my health! ❤

Fuck fuck fuck.

Where do I start? Where do I even fucking start?

My mental health was deteriorating greatly as a result of the chemotherapy-induced menopause and all of the symptoms that came along with it. After speaking with my gynecologist, I made the difficult decision to go on estrogen therapy to help me find some sort of normality. A consultation with my oncologist confirmed that this course of action was definitely preferable to the path that I was on, which was – I hesitate to say – one that may have resulted in suicide.

After three weeks on the estrogen patch and nightly progesterone pills, I was again sleeping through the night, my mood had improved, all hot flashes had completely stopped, and I finally, after two years, felt like myself again. I was happy, my gynecologist was happy, and my oncologist was happy. Of course, this was too good to be true.

On Saturday, I scratched my ear and found that I had dried blood in my ear canal. I almost made a doctor’s appointment that day, but decided to wait and see if it recurred. I had no evidence of blood in my ear on Sunday, so didn’t think about it, but on Monday I found blood in my ear again. I went in to see the express care physician at Walgreens, and she said that I had an irregular mole in my ear that would have been concerning on its own, but the blood made it especially worry some. She suggested I go see my dermatologist for a biopsy. I was able to get into see my dermatologist yesterday, but the dermatologist does not even have an otoscope, so couldn’t see the mole, which is deep inside of my ear. I then had to make an appointment with an ENT. I have that appointment this afternoon. I hope that it is not cancer, but if it is, I hope it is not a reoccurrence of my breast cancer, but instead a new kind of cancer. What a horrible fucking thing to hope for.

In the meantime, on Friday, my period started. In the old days, this would have been cause for celebration, but now that I’m on hormone therapy, it’s actually a bad thing – you’re not supposed to bleed if you’re in menopause and on daily progesterone. I called my gynecologist on Monday and left a message for the nurse. The nurse did not call me back, so I called back again today, to find out that the nurse will not be in again until Tuesday, and neither will my doctor. I told the receptionist that I needed to speak to someone, because I had left message on Monday and I didn’t feel like waiting over a week to talk about the bleeding I am having. My gynecologist called back and left me a message on my voicemail line, stating that I would need to have an ultrasound and an endometrial biopsy since I am on tamoxifen and hormone therapy. I am on not on tamoxifen, and I have no fucking idea where she got the idea that I am. Right now I just feel helpless, hopeless, bullied by the medical system, and ultimately, scared.

I’m so tired of living this way.

Tell me what to do.

Life is full of decisions. Black shirt or red? This job or that? Eat dessert or not? I’m used to making decisions. I even think I’m pretty good at it.

Cancer was full of decisions too. I read, I consulted, I cried, I researched, and I made every one. And I was confident in every one. But it’s not over. It will never be over.

Because I am cancer’s bitch now. Every day, every minute, every second of my life, I live with the spectre of cancer looming over me. I thought, so naively, that I would get through cancer. That I would move past cancer. But you never do, because you’re never really “cured.” You’re just waiting.

For two years, I have struggled with menopause brought on by chemotherapy. Let me list, just for posterity (a word I just couldn’t remember and had to google because, you know – menopause), some of the symptoms:

  • hot flashes
  • night sweats
  • disorganized thinking
  • forgetfulness
  • decreased libido
  • dry eyes
  • dry vagina
  • neck cramps
  • irritability
  • depression
  • wrinkles
  • thinning hair
  • thinning skin

That’s just off the top of my head. My body aged 10 years in three months and this shit came on overnight like a bucket of cold water over the head. But cold water, what a relief that would actually be! I slept through the night last week – something I haven’t done since December, because every single night I wake up numerous times, drenched in sweat, feeling like a fire is burning inside my body. I finally made an appointment with a psychotherapist two weeks ago, one recommended by the survivor outreach nurse at Swedish, because for the first time in years I felt suicidal. I feel trapped inside my own body and the ONLY way out of that would be to ESCAPE THIS BODY.

But that’s not what I want either. In the past, my suicidal thoughts have been linked to brain chemistry, to feeling worthless, useless, a burden. I know I have important jobs now – I’m a mother to two amazing children, I’m a friend, I’m a wife, I’m a sister. I want to watch my children grow up, I want to grow old with my husband, I want to change the world by filling it with kindness every day. So it’s not chemical – it’s situational. And most situations, you can rely on them ending, eventually. But what when the situation is a body that has been fucked up? What when it could be a year or a decade or even longer? What when there is no end in sight and you’re trapped day in and day out in a body that is betraying you? And could ultimately betray you to death?

So I decided to take control. I went to my gyno Tuesday and I laid out my situation and she put me on an estradiol patch and progesterone pills. And suddenly I felt liberated. It’s too soon to know if it’s working – the hot flashes continue, and it could take up to three weeks to know – but I had hope. Hope that things would get better. And more than that, agency – over my own body, over my life, over what cancer took from me.

We talked about it, of course, and I already knew – hormones are verboten for those of us with ER+ PR+ cancer. In fact, if you have been following my blog, you may remember that the actual full treatment for hormone+ cancer includes a drug called Tamoxifen that actually blocks naturally occurring estrogen and progesterone and sends the patient into menopause. I opted out of Tamoxifen, but it turns out I didn’t need it – my body went into menopause on its own. So in brief, hormones bad, make Kate’s cancer grow. But lack of hormones also bad, make Kate want to die.

Where the hell does this leave me? Fucked.

After floating for the last two days, I just got a voicemail from my gyno. She spoke with my onc, with whom I have an appointment tomorrow. He is not happy. She reiterated several times that he understood why I had chosen to go on hormones, but that he was not in support of it because naturally they have no data on what it does to survival rates. But since we know that blocking hormones increases survival rates, I think we can safely guess what increasing hormones does. Or can we? I mean, who the hell really knows?

So tomorrow I go meet with my onc, who you may remember I absolutely adore. I trust and respect him beyond words, so I already know this is going to be a tough appointment. And I don’t even know what to do at this point. I feel like whatever decision I make, I lose. I literally have to choose my mental health and physical comfort OR potentially dying of cancer.

And if it were just me, if I was a single, childless woman, I know what I would choose. I’d do the hormones and just live until I died. So maybe that’s my answer. But it’s just not as simple as that.

So here I am, wedged between a rock and the hardest of places. And standing here, I raise my middle fingers to the sky and say, FUCK YOU CANCER. FUCK. YOU.

Here be dragons.

I am writing this for me. I am writing this because I don’t know what else to do. I’m writing this because sometimes, for me, writing is a form of bloodletting, and I feel weaker but better afterward.

I am writing this but I don’t know where to start. I don’t want sympathy. Empathy, sure, maybe, if someone has been there. It’s a start. But it still won’t change things. Won’t help. I definitely don’t want pity. Good god, not that.

When I get here there’s a phony Kate that I have to push to the front. She smiles. She laughs. She asks questions and does the things she’s supposed to. Maybe she seems normal, but she doesn’t feel it. She feels like a cheap plastic imitation of me. Vacant. Vapid. She’s doing her best, don’t get me wrong. But she’s only covering. This isn’t her full-time job.

I am not sure what is going on. My medication is the same. I am depressed about some situational things, yes. I am depressed because three years ago, my body aged ten years in three months and it has not come back. I am depressed by the constant hot flashes, the night sweats, the muscle tension, the aches and pains, the forgetfulness, the thinning hair, the ache inside of me where I swear there was supposed to be a final child. (And for this last, I feel guilty, embarrassed. I have two beautiful children, what am I complaining about? I cannot explain the feeling that there is someone missing, that the two pregnancies I lost haunt me, that I am certain, somehow, we are meant to be a family of five – but I digress, and please don’t hate me for my greed.) The weather is soul-sucking. My house is a catastrophe. I miss my grandmother. And my Dad. I can’t remember the last time I slept through the night. I’ve had nausea and the jitters for the past two days. Nothing feels good, nothing feels right.

I don’t – if you don’t fight this battle, I’m not sure I can describe it for you. And I know my description will be only mine, because each person fights so differently. But if you can imagine a day when you are down, for no specific reason, just down, and then imagine that there is nothing that can make you feel better – that is a start. “Go shopping,” friends tell me, “get a massage.” “Self-care, meditate – want to go to the movies?” Oh, and my favorite, “Exercise!” When I’m well, there are things I love. Taking photographs, dancing, making mix CDs, organizing, socializing, learning. When I’m here, where I am now, none of that sounds a) appealing or b) worthwhile. There is not one thing I want to do at this minute. Even writing is a struggle – I am forcing myself, but I feel myself rambling and ready to quit at any moment. I’m not illuminating anything. I’m just prattling about nothing. And right now, this is my every day. My everyday.

I feel terrible that my kids are seeing this, this gray mother, not the mother they’re used to, not the mother they deserve. Will they remember these days? Will it ruin them? Motherhood is the only thing I’ve ever been truly good at. I can’t fail at that too.

I’m seeing a therapist tomorrow. A new therapist, he specializes in post-cancer care. It feels pointless, honestly, although I know from past experience it’s absolutely not. Now that I’ve typed this all out I feel no better and just want to delete it but it’s a window. And I know you can’t just see in windows, but also out. Here’s to seeing the sun soon.

Oz Series Finale: WTF

I know this is a major deviation from my standard blog fare, but the cancer couldn’t last forever, and it was kind of a downer, right? So I think I might start blogging about some other stuff as the mood strikes. And when I have time. So, like twice a year. We’ll see.

Anyhow. I have been binge watching the TV series Oz for, I don’t know, the last year. How does it take a year to binge watch a six-season TV show, you ask? Add two toddlers to your life, plan to binge watch it only when you have time to watch TV by yourself (not with your significant other), and then take a second to congratulate me that it only took a year.

I am about to go into major spoiler mode so if you haven’t watched Oz (I do recommend it, in spite of the SHITTIEST SEASON FINALE IN THE HISTORY OF TELEVISION) and you want to, just bookmark this and come back to it. Believe me, you’ll want to.

Okay, WHAT HAPPENED? Did they run out of money? Steam? Did the show get canceled halfway through the sixth season? Seriously I ask you wtf?

Let’s start with Alvarez. Did he prove he’s changed to the new parole board head? Will he get out at his next parole hearing? Will he find love with Cutler’s widow? And why the hell did Cutler leave him all his stuff? Did the writers have an explanation for that in mind that we’ll just never get to see?

BOBBY CANNAVALE. Did you know he used to be hot? He was. He was a hot gay man (virgin?) with bleached hair and a crazy eye and lipgloss who goes to Oz because he throws acid in someone’s face. Why did he do that? Why is his eye crazy? Is he really a virgin? Do he and Alvarez form a relationship? Why the hell does he want to “be” Alvarez? Why did they introduce him midway through the sixth season if his storyline wasn’t going anywhere?!?

Joffrey?!? Who is this guy?!? What’s going to happen with him and O’Reily’s mother? More importantly, what is going to happen with O’Reily and Nathan? Both Joffrey and O’Reily are handsome and intriguing, I feel like we deserve to know more about what happens with their characters.

WHAT WAS IN THE JAR? Was it anthrax? Why would someone send a jar THAT BIG of anthrax to the prison?

Governor Devlin! Is that motherfucker going down or what?!? Let’s face it, we all waited six seasons to see him go down in a rain of fire! You’re really going to hint at that and then… nothing?! He needs to end up in Oz with Robson as his roomie!

And Robson – is he experiencing remorse? Turning over a new leaf? Guess we’ll never know.

Uh, Pablo? What was his point? He was gunning to be a major character and then… splat. That’s it, no more info.

Stella and Rebadow. Together? Not together? Friends? She survives BC? Does she have to get chemo? (Ah, the blog DOES come back to cancer, after all!)

Jessica Kirk – what the hell? Was that just a mind game? Is she going to come back and make Masuka’s life hell or what? What was the point of that?

Jax! And his Dad! And his birth parents! What the hell? Why even introduce that storyline?

I can’t think of any more pressing questions I had although I am sure if I’d been taking notes I could have come up with some. Right up to the end I was hoping. “Well, maybe they’ll do text saying what happens to the characters.” But no. Just a bus going nowhere.

A perfect metaphor for the series.

Watching life

I had my heart ultrasound yesterday. I won’t have the official results until next week, but the tech told me she saw nothing worrisome, so I’m not concerned.

What was interesting, though, was the test itself. Even having been through cancer, I don’t think I have ever felt my mortality, my fragility, as strongly as I did watching my heart pump on a screen. I mean of course I know I have a heart, have guts. I’ve had surgeries, given birth to babies. I am keenly aware of how everything inside me works – or doesn’t work. Still, watching my heart – MY heart, my very own HEART – pump as I lay there was both terrifying and thrilling. I watched my mitral valve flap open and shut. I saw the machine’s colors indicate blood flow. I saw in real time my heart doing its job to keep me alive, and somehow that sparked a deep, instant knowledge of how easily it could be stopped. It also rekindled a feeling I have had precious few occasions – a sense of pride in my body, of possession, of protection. That heart is mine, and it’s doing exactly what it’s supposed to do, and I love it.

Heartbeat

For as long as I can remember, I have had a fairly slow pulse rate. It usually hovers around 60 at resting. I am by no means what anyone would consider athletic, although I think I am in fairly good health (cancer not withstanding).

Within the last couple years, a doctor detected a murmur in my sister’s heart, and she was diagnosed with a mitral valve prolapse as a result of Marfan Syndrome. Sounds pretty scary, but hers is very mild and should very likely never cause her any problems. Nonetheless, given that I have many of the same Marfan characteristics (long arms, legs, and fingers; tall and thin body type; curved spine; flexible joints), I brought it up with my physician, who recommended an EKG. I went in for my annual exam yesterday, and she and the nurse both commented on how low my blood pressure was (96/80) and how slow my heartbeat was (58bpm). Sensing a challenge, my heart said, “You ain’t seen nothing yet!”, and when they had me lie down and hooked me up for the EKG, my pulse came in at 48bpm – a condition known as bradycardia.

My doctor said it’s possible I just have a large heart – to which I replied, “No, duh!” – but recommended I go get an ultrasound to be sure.

Is this sounding familiar?

This is the same doctor who felt the fat lump in my breast and correctly diagnosed it as nothing, but recommended an ultrasound “just to be sure” – which is how my breast cancer was detected. So naturally, I am nervous.

I called the ultrasound place today and tried to schedule, but they have to wait for preauthorization from my insurance company, which usually takes about a week, according to them. I know this is SOP and really shouldn’t piss me off but it does because that means I have a week with my fears and Dr. Google. And I know this will probably be nothing but it does appear that in some cases of bradycardia a pacemaker needs to be implanted to speed your heart up to normal, and since I’m already 39 and in fucking menopause, I don’t really need something else to make me feel 60. Also, it should probably be noted that my grandmother died of heart disease.

On the bright side, I don’t have some of the other factors that point to bradycardia as a result of heart disease – I have a low blood pressure and, per my doctor, “Excellent cholesterol!” So I guess I just have to wait for the ultrasound and see what it turns up.

Boo bureaucracy.