The Wonder of Sleep

Hello. Did you wonder where I was?

As usual, when I blog, I have a thing going on. The thing is “trying to undo years of chronic insomnia.” It’s now 4:05AM. It made me wince to type that.

Maybe another post if I feel like it I will get into the long and sordid history of my insomnia but all that really needs to be said for the purpose of this post is that I have been taking Trazodone, a mild prescription sedative, to help me sleep for probably 20 years. The only times I was off it was when I was pregnant, at which times I was advised to “try Benadryl” for “occasional sleeplessness” and during which times I basically slept whenever and wherever I was able, and thank God I wasn’t working a regular office job because it was often during the day.

I have two different types of insomnia. First, it is very hard for me to fall asleep. It can take me anywhere between half an hour and two hours after I lie down in bed before I drift off. And two, I am a light sleeper and if I am awoken during the night I cannot fall back asleep.

I am an excellent napper so all this might be okay if I could sleep, say, 1am – 3am, 5am – 9am, and then 3pm – 5pm. And if I was a hermit living off the land and off the grid I probably could, but that is not the way life goes.

I am now seeing a CBT-I for my insomnia. That is a psychologist specializing in Cognitive Behavioral Therapy for Insomnia. One interesting thing to note is that my typing is just terrible at 4:12am and for some reason autocorrect does not seem to be enabled in WordPress, so it’s taking me a very long time to type this. I said it was interesting, not related.

I’m currently on a “sleep prescription.” Here are the rules:

-I am to sleep only 12am – 7:15am.

-(I cannot figure out how to bullet this list gd it.)

-I cannot at any time during the day lie down in bed.

-I cannot nap.

-If I lie awake in bed for more than 10 – 15 minutes, I am to get up and do something (hence the writing).

-No Trazodone.

-I have to keep a chart that is a record of my sleep.

I think that’s it.

It sounds fairly simple and the first two nights, in spite of Julian snoring and dogs barking it wasn’t too bad. I averaged about 6 hours of sleep and felt okay.

The thing about sleep loss is that it’s cumulative. (I say this as though it were a fact but actually I have no idea. I’m just basing it on my experience.) The third night (yesterday night) Julian snored and apnea-ed so much that I was awake basically every half hour between 12am and 2:30am, when I finally sent him upstairs to the guest room. Then I slept fine until 6 when a VERY enthusiastic bird woke me up. (“TWEET. TWEET. TWEET.”) I was DESTROYED yesterday. Like irritable, nauseated, panicky, unfocused, just a real mess. I decided to remedy this by going to bed at 10:30 last night. Is that my sleep prescription? Ladies and gentlemen, it is not. Did I sleep between 10:30 and 12? “Fitfully” would be the word I would use. The dogs barked at 12am and I let them out and went back to bed. I continued to thrash about and sleep on and off until 3-something at which point a thunderstorm started and then the dogs started barking at that. I got up and played on my iPad a bit and now I’m typing this which has suddenly gotten VERY boring so maybe I am getting tired? 4:23am.

Last two things I wanted to say that seemed important when I thought them.

One, it’s weird to get up and do something in the middle of the night and feel as though you have “permission” to do so. Typically when I am tossing and turning I am also chastising myself for being awake and wondering what is wrong with me. If I look at my iPad or phone or get up I am being “bad” and should be trying to sleep. This is a unique and somewhat freeing feeling which I think I would enjoy more if it weren’t for the sleep deprivation induced-nausea.

I can’t remember what the second thing was. But I am supposed to be up in less than 3 hours and coaching Con’s baseball team at 11.


Easter Egg Stuffer Ideas, COVID-19 Edition!

Normally I go out and browse stores to find little tchotchkes to stick in the kids’ Easter eggs, but this year that’s obviously not in the cards, so I browsed around Amazon and found some cute non-candy items, and thought I’d share in case anyone is in a similar position! I can’t officially vouch for any of these items yet because I JUST ordered them but hopefully they’ll work out.

Two VERY IMPORTANT notes. First, many of these items come in bulk, so if you have fewer than 12 kids, maybe go in on some of them with neighbors and friends. And second, you’re going to have to hop to it if you want these in time for Easter – Amazon is prioritizing shipments to get necessities out first.

Have other great egg filler ideas? Please share!

Love in the Time of Corona

I guess I’m a crisis blogger. I mean I often think about blogging, but it only seems to happen when the proverbial shit has hit the proverbial fan. And here I am again.

Monday was nice, wasn’t it? “We can do this! Let’s educate our children! Clean our house! Telecommute! Make a family dinner! Full-steam ahead!” I think by Wednesday I had started stress-eating, and I haven’t stopped. A friend posted, “Remember the ‘freshman 15?’ I’m working on the ‘COVID 19.'” So at least I know I’m not alone.

My body’s also trying to tell me I’m depressed. I’m having trouble getting to bed before midnight or 1am (so Seattle friends, feel free to holla at me after you put your kids to bed!), and having trouble getting up before 10… or sometimes noon. I don’t feel the typical mental anguish I do when my meds stop working and I spiral, so I guess this must be what they call “situational depression.” I told Julian I feel almost bipolar – I go from feeling like we’ve got this nailed to feeling absolutely hopeless within minutes. It’s an emotional roller coaster for sure.

I’m doing things to keep myself positive, though.

  • Writing letters to friends and sending them via snail mail.
  • Making dance play lists on Spotify.
  • Cross stitching.
  • Going for walks.
  • Talking to neighbors when I get the mail (minimum 6′ distance, don’t worry).

And I want to start doing other things, too. Like a self-portrait series. And designing greeting cards and selling them on etsy (I already did a couple!)

What are you doing for self-care? And do you want to be my pen pal?

Sometimes ya just gotta blog it out.

Well, first of all – still in menopause. Hormones still whack. But a dubious psychic told me Saturday night that I’d have twins in 2 1/2 years. So, you know. Stay tuned for that.

I was scrolling through Facebook today when I came across this outstanding article: A Woman in China Tried to Cure Her Cancer by Swallowing Maggots Oh yeah she did! Because “someone told her” it would work. I read the article, while trying to stop my eyes from rolling out of my head, but here’s the thing – although I’m sure most Americans are like, OH MY GOD THAT IS NASTY WHAT THE HELL WAS SHE THINKING, it is no worse than some of the other wacky, stupid sh*t people have suggested I try to deal with my cancer. Like this bananas “cure.”  Or of course let’s not forget the “doctor” who “blew the whistle on chemotherapy.”

In a twist of fate, mere hours after I read about ol’ Maggot Snacker and mused on all the cancer misinformation there is out there, I saw a post about thermography being the new “gold standard” in breast cancer diagnosis, better than mammograms. I was immediately intrigued, in spite of the web address (Dr. Jockers? Uhhh…) A brief Google search turned up an article by the FDA regarding the fact that thermograms should NOT be used in place of mammograms and an NIH study that indicated they are less effective than mammograms but can be used as adjunctive diagnosis tools. Bummer. Nobody hates a mammogram more than this large knockered lady, believe, but I’d rather have a million mammograms than cancer again. I posted these links to my friends post, and her very kind reply was one I have come to expect, much as I loathe it: that the FDA is not looking out for us, they are following the money, that they have a hidden agenda (I guess they prefer squashing boobs to heat scanning them?), that ethical healthcare practitioners are few and far between, and that in other countries with better healthcare systems than ours, thermography is treated as equal to mammography. I asked how she explained the NIH study, and a friend of hers chimed in with a quote about how studies now are unreliable because they are done only to support (you guessed it) the FDA/the government. I also asked which countries specifically believe thermography is equivalent to mammography but she has not seen my question/not replied yet.

Guys, I don’t trust the government any more than the next guy. I think our healthcare system is jacked. I hate that so many things follow money, and I have a HUGE problem with Big Pharma. But at the same time, there are things that don’t make sense to me. If thermography is so great, why wouldn’t the FDA/other healthcare agencies be investing in that and jacking up the prices? Why wouldn’t insurance be covering it (it doesn’t) at a premium, like they do with everything else? Are we really to believe the government wants us not just sick, but dying of cancer?? That they like the additional (small but real) risk of cancer presented by the X-ray technology in mammograms? I just – I can’t buy into that. I don’t think my oncologist likes me sick. I don’t think my amazing, kind-hearted brother-in-law is becoming a doctor for the express purpose of making money by deliberately keeping people unhealthy. And I have to wonder if the people who believe these things actually personally know any doctors. (And I don’t mean Dr. Jockers – whose house, incidentally, you can apparently get a tour of on YouTube. Cool!)

Whenever people post about or message me with junk science – and make no mistake, this is junk science – with regard to cancer, it both personally offends and outrages me. The spread of this misinformation is so pervasive and SO DAMNED DANGEROUS that I just don’t know what to do or say about it. I pray none of the women in my life are diagnosed with breast cancer in their lifetimes, even as I know that is an impossible wish. I celebrate when there are REAL SCIENTIFIC BREAKTHROUGHS – like the one detailed here by CNN, wherein the big, bad, malicious FDA has approved the first immunotherapy treatment for breast cancer. (I do not know how they will continue to thrive as an organization without all that chemotherapy money, but I guess time will tell.)

I guess my plea is this: Please just research. Ask questions. Ask not just Facebook and Dr. Google, but real doctors, real nurses, friends, colleagues, and survivors. Ask everything and assume nothing. Advocate for yourself, always. Stay on top of your screenings. And don’t spread cancer diagnosis or treatment news or rumors as gospel unless you know they are corroborated and vetted and safe. Because someone is looking at you as an an intelligent advisor – maybe even as an expert – and you don’t want to be the reason they make a decision that could result in their death.

Unless you’re the FDA. Then I guess you want death and discomfort for all.

Pet Funeral Service

So this is random and unrelated to anything else I’ve posted BUT. Every time one of my pets dies (yes, it’s happened FIVE TIMES now with cats alone), I have a funeral service and I force my long-suffering atheist husband to participate, which he gamely does.

Over the course of time, I have collected and cobbled together a funeral service that gives me comfort. I thought it might be helpful to provide it here in case anyone else might find it useful. I typically cut out some prayers to make it shorter, but I am including all of them in case some speak to you more than others. I have given credit when I could find authors.

At the end of the doc is a Euthanasia Prayer I just found, which is very sweet and resonated with me.

A note that this IS a religious service, though it spans several different religions. And it could probably be edited to suit your personal belief system.

If you’re reading this or have found this because you need it, please know I sympathize and understand. May you find comfort in your memories.

Animal Funeral Service

Hi, stranger.

It’s been awhile.

I don’t remember where I left off, and now that I have finally started writing, I am loath to stop and go look. So I’ll just give a quick and dirty overview of where I am, health-wise.

So I had cancer, I had chemo, I had radiation. Chemo plunked me directly into menopause, as it is wont to do. I struggled hard with menopausal symptoms for two full years. A short list of such symptoms would be hot flashes (~20 a day, on bad days), night sweats (did not get a full night’s sleep for 2 years), skin thinning (I would bump into something and start to bleed), wrinkles appearing literally overnight, hair thinning, weight gain, breakouts, irritability, mood swings, and depression (even while on medication). I basically made it through the first year clinging to the “knowledge” that chemo after-effects wear off after a year. And I made it through the second year thinking that surely, I must reach that light at the end of the chemo tunnel soon. And as the third year approached and I seriously contemplated suicide, I went to my oncologist and my gyno and said, “I cannot live like this anymore.” The agreed and in spite of the fact that I have hormone-receptor positive cancer, put me on hormone replacement therapy (HRT) – estrogen (a patch applied twice weekly) and progesterone (a pill taken nightly). This went fine, hot flashes disappeared, I finally started sleeping again, and my period came back. Unfortunately you’re not supposed to have a period when on constant progesterone, so I had to go in for an ultrasound and an endometrial biopsy. (Gosh I hope I didn’t blog all this before, but if so, sorry.) The endometrial biopsy sucked ass but turned up nothing bad. The ultrasound actually showed follicles (eggs) in my ovaries, which of course sent me over the MOON – a previous blood test had shown I had no eggs left.

Per the two doctors, I went OFF hormone therapy, because it appeared my body was bouncing back. Oh, not so! All my symptoms came back with a vengeance. I went back on HRT at a lower dose of estrogen (0.05mg to 0.025mg) but the symptoms continued. So I am now back on 0.05. Well, actually not today. But I’m getting there, hang on.

I guess the first thing to note is that my gyno was well aware of the fact that I wanted another child. I discussed it with her in depth on multiple occasions. However, when I called her at one point and asked what to do if I became pregnant while on HRT, she told me, rather coldly, that I should not become pregnant while on progesterone, and that J and I should be using condoms. I told her that seemed counterproductive to me conceiving, and her reaction amounted to a shrug. I then proceeded to switch gynos. (It wasn’t just this – I also could never get ahold of her, and her office once refused to refill my estrogen prescription, stating that their notes showed my oncologist had said I shouldn’t be on it, which was completely – not just incorrect, but an outright lie.) Yesterday I got a letter in the mail stating that she is retiring, and I am not surprised, because I didn’t get the vibe she really cared about me as a person. I don’t think she was loving her job.

When I went to see the fertility doctor in October, she was surprised that gyno had me on a steady dose of progesterone while knowing I wanted to conceive, since PROGESTERONE IS BIRTH CONTROL AND KEEPS YOUR UTERINE LINING THIN. So even if I HAD conceived, I would not have been able to carry the baby because there was nowhere for an egg to attach. 😡 She switched me to – gosh you know I can’t even remember. I think it was supposed to be two weeks on of a double dose of progesterone, then two weeks off. But the double dose of progesterone made my hot flashes come back like whoa, so she cooled it to two weeks on of a single dose of progesterone, then two weeks off. That’s been fine.

Last month, two days before Christmas, I got a period for the first time in four months. Super normal, just like the old days.

This month, on the 21st, I got my period – not even for a full day, for a few hours. A one-tampon period. Then nothing. Honestly, guys, my body has been so jacked up for so long that I didn’t even think anything of it. Just typing that somehow made me want to cry. I guess – here’s the thing, I never thought I’d still be dealing with this shit three years after completing chemo. I thought I’d be, you know, worrying about whether or not I’d have cancer again. Maybe even having cancer again. But not dealing with shitty shitty bullshit fallout related to my treatment. What a load. Anyhow. Four days passed and then it’s like the floodgates opened. I woke and was bleeding again so I put in a super (if any dudes are reading this, that’s the strength) tampon. Four hours later I went to pee and had bled completely through the tampon, through my underwear, and into my pants. I replaced. Four hours later, same deal. THIS WENT ON FOR FIVE DAYS. I was exhausted, demotivated, and had some of the worst cramps of my life for those five days. It’s now day 7 and I am still having slight old blood (brown) discharge.

I conferred with my gyno (new gyno, much better) and have again gone off HRT (as of yesterday). I will remain off for a week and go in Monday to have my blood tested and see where my hormone levels are. Best case (please cross your fingers) scenario – my hormones are returning/have returned to normal and I can stop HRT and go back to having a normal monthly period. I don’t even – I mean I’d still love another kid, but I’m almost 41 now, and after everything I’ve gone through, I’m not even focused on that at this point. All I want is for my body to function in somewhat the same way it did before I had cancer. That’s all.

And here’s the thing. This all sucks so much BUT THIS HAPPENS TO WOMEN ALL OVER THE WORLD ALL THE TIME. Why aren’t we talking about how breast cancer, even when cured, fucks you up for life? Why aren’t we talking about how no one has any answers?!? Like, that is the most stunning and enraging part to me! NO ONE can tell me when/if my body will return to normal. NO ONE can tell me WHY my body is doing the stuff it’s doing. I mean honestly, not even TWO DIFFERENT GYNECOLOGISTS WHO ARE FUCKING TRAINED IN WOMEN’S BODIES UNDERSTAND WHY I KEEP BLEEDING! This is an actual quote from the gynecologist I actually like:

“Interesting that your period comes before you stop your progesterone.”

YEAH IT IS! Everything my body does seems to be “interesting” and “curious.” Could you please tell me why?! I know other women must have gone through this! I don’t believe I am a reproductive freak of nature! I have had ultrasounds and scans and biopsies that indicate everything down there looks perfect and in good working order, so why can’t anyone predict what is going to happen or when or how or WHY?

Sorry I went off the rails there but it is so incredibly frustrating to feel like you know as much as your doctors do about what your body is doing and is going to do, especially when “as much” is essentially nothing.

Also, in conclusion, I am dreading the blood work because I always get my hopes up thinking it is going to be THIS TIME that my blood work comes back normal-ish and it never does. In three years it never has but I know I will still get my hopes up and have them dashed when I find out my damned body is still menopausal at 40 and there is still no one anywhere who can tell me when or if that will change.

That brings everything up to date. I’ll post when I get the blood work back or if anything else happens. And if the post just says “My body still sucks,” you’ll know what that means.

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.