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.

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.

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.

Complicated: an addendum

Complikated is what I named this blog, because it’s life, and it’s me. It’s everything, really; nothing is ever simple, or what it seems.

Complicated now perfectly describes my mind’s relationship with my body. Am I strong or weak? Did I survive or surrender? Am I young or old? And does any of it matter?

It seems like this setback is about a miscarriage – although can I even call it that? I was three days attached to an idea, I’m not sure if that even qualifies. But that could just be me selling myself short, as I always do – my births don’t count because they were C-sections, my breast cancer doesn’t count because I only needed a lumpectomy and am now cancer-free. That latter is a topic for another blog, though, so let me return to the topic at hand. This is and isn’t about a lost pregnancy, or the idea of a lost pregnancy. That is what put me here, back inside a dark space, groping for answers that don’t seem to exist. I am grieving, yes, because as stupid as we knew it was, we were making plans. But that’s not the whole of it. Not nearly.

I am living inside a body I no longer feel connected to and that I do not understand. Before cancer, my period came reliably – every 26 days before birth control, every 28 days after. It was the same period every month, light, then heavier, then a day of nothing, then a final day. My skin always broke out the week before. I always thought I looked thinner when it was over. It only disappeared when I was pregnant and came back soon (too soon) after I was not. I knew the cramps. I knew the mood swings. I knew my body and what it was doing.

Then cancer. Why? Who can say. Too much milk as a kid. Years of birth control. Eighteen years of second hand smoke. Adverse Childhood Experiences.  A gene they have yet to identify. Dumb luck. But suddenly my body was a stranger. Some part of me had turned against itself and I didn’t know why or how. And to treat it, I had to abuse myself, first with surgery, then with poison, then with more poison. I had to make decisions based on data, not on what my body was telling me, because I could no longer trust my body. I COULD NO LONGER TRUST MY BODY. This body that has walked me through 39 years, two marriages, three pregnancies, two children, life, love, depression – it had been keeping secrets from me and I could no longer believe what it had to say. I could no longer assume fresh air and plenty of vegetables and walks in the woods were enough. I had to take up arms against my own body, and so I did.

I think I knew all the possible long-term effects. No, that’s not true, I didn’t. I didn’t know about tendinitis and IBS, two issues that now plague me post-chemo. I did know about the fertility issues, but I think I didn’t believe. So reliable, my period. Besides that ruptured tube, my fertility was a given. It was never could we have a third child; no, we were so naive, so oblivious to our privilege – it was would we, as in, did we want to. As though it would happen based upon our whims. As though we could control it. Even before chemo. Even after.

I feel myself growing long-winded and obscure now, so I will just stop meandering and get to the meat of the issue, which is that this is one more indication that my body still operates on a separate plane from my mind, that it is still unreliable and untrustworthy, a cage I now feel trapped in instead of a vehicle my spirit is at one with. Somehow my butterfly of a heart got it into its head that it was free, and in so doing, bashed itself against the walls of its cage until its wings were broken and the cage floor covered in dust. And so it is about the miscarriage, of course, but only because it brought my mind back down to earth, reminded it of who is in charge, that it should expect nothing joyous anymore from this deceptive shell.

I know this is dark, and I feel the need to apologize for that, but as I said, this has cast me back to a dark place. A slap across the face to bring me back to the reality of my situation, which is that I have survived, but only just, and that I cannot count on anything.

Missed Conceptions

Last month – May 9th, to be exact – I started spotting. It never got heavy, but it lasted for a full five days.

My oncologist said it was just my hormones trying to normalize. My gynecologist examined me and said there was nothing wrong and it could by my period or just hormonal spotting. Desperate to know if, after a year and a half, my body was finally normalizing, I took a digital ovulation test, which showed that yes, I was ovulating – on Julian’s birthday.

My “period” should have come back on or around the 4th – the 6th. I took several pregnancy tests, which all came back negative. On Conor’s third birthday, I took one that came back positive. Julian and I were both in shock, which, over the course of several days, morphed into excitement and joy.

Because my first pregnancy resulted in a ruptured tube, life-threatening internal bleeding, and emergency surgery, as soon as I discover I am pregnant I have to get two hCG tests two days apart. When a pregnancy is in the uterus, hCG levels roughly double every 48 hours. With ectopic pregnancies, hCG creeps up much more slowly. I had my hCG tested on Tuesday and it was very low, which was expected – I was only very newly pregnant. Yesterday, I inexplicably started getting a sinking feeling that I was not pregnant. Julian thought I was being crazy, but I felt sure there was some error – in spite of the positive home and blood tests – and I was not actually pregnant.

This morning I called to ask if that was possible, and the nurse called me back with my second hCG results. My hCG had stayed stable – not moved at all. She said that indicated that conception had occurred, but that for whatever reason, it had not developed or continued. She said I would get my period as normal, and could try again next month. I asked if there was any possibility that I was actually still menopausal, that perhaps it had been a false positive and I had never been pregnant at all. She said she didn’t think so, that menopause wouldn’t cause hCG to rise, and that very likely my body was ready and I should just keep trying.

I hung up with her and wept.

I have so many thoughts and they’re all jumbled so I’m just going to word vomit them here. I just had a miscarriage. I wonder if I conceived in the ruptured tube and then it traveled down and was not able to get to the uterus. Should we even try again? I’m kind of old. I thought this was a miracle. Is my body actually back to normal? I’m so fucking tired of wondering where I stand. Chemo really fucked me up. Why did we have to get that positive result? I could have just kept going along not knowing. This feels like a cruel prank. At least I can drink when I go visit my sister. Should I bother to ovulation test again? Will my period come again? When? Did I really know I wasn’t pregnant, or was that just fear talking? Being a woman is bloody impossible. Fuck you, cancer. Julian was so happy. I am so disappointed. I feel like a disappointment. I am both devastated and unsurprised. I knew it was too good to be true. I am surprised by how excited and thrilled I was. I am surprised I let myself get so invested so fast. I really don’t know if I can do this again.

Finally: I am strong, and I just need to pick myself up, dust myself off, and keep moving forward.

I’m okay!

Okay first a short bit of clarification.

It’s not like I am desperate to have a baby – that’s not what all the tears were about yesterday. I have two awesome babies – I am luckier than many! But we definitely were seriously considering another baby, and it just sucks to have that choice taken away. When my period came back that one time in June, I honestly thought, “Wait, maybe I don’t want another baby!” I just want to have the choice.

Much of the sadness/anger revolves around not the reproductive side of menopause, but the physical side. I have hot flashes constantly, and they’re miserable. They’re made worse by alcohol, so even a glass of wine can set them off. I have sore hips and a stiff back. My skin breaks out. I’m bloated and irritable. my hands are swollen and stiff every morning. I am forgetful. These are all menopause symptoms. I had hoped my hormone test would come back on the pre-menopausal side, so I could look forward to these annoyances tapering off. Instead, I’m still in the middle of menopause, which means I could be dealing with this stuff for a long time yet to come – years, even.

Anyhow, I talked to Dr. K last night and really there was nothing new – my numbers look bad for my period right now, but he says they can’t predict what will happen over the next four months (end of March is one year from the end of chemo). He says he has 75 year-old women with lower estradiol than mine, so it’s just a question mark right now. In three months he’ll test my blood again and see what the numbers are. Until then, I continue to wait.

But I’m okay. I’m great, actually. I have an amazing family and an awesome life and wonderful, supportive friends. And I’m alive and cancer free, so for now I’m just going to suck it up and deal with the little physical set backs and hope for better days ahead with regard to that!

Hormones and Grief (Video)

A 5-minute video about what’s going on with me. Apologize for the mood and for not just typing it instead – just don’t have it in me to type this up right now. If this doesn’t work, I also uploaded it as unlisted on YouTube: https://youtu.be/Ap5svJsM6V0

I also want to add that it’s not just the baby thing that is upsetting me. It’s all the physical ailments, which are being ascribed to “hormones,” and have no end in sight. It’s going through menopause before my time, before I’m even forty. It’s feeling cheated and old and helpless. It’s everything.