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.

Nameless

There is a strange and hollow loneliness that comes from being in a unique situation that no one else you know is in or has been in. The general sense may be familiar, but the particulars are such that the concept itself becomes a very specific monster.

I count my blessings and find they overflow, but still this monster casts its shadow on my heart, and I don’t know how to talk about it or even who to talk to. There is nothing anyone can do and maybe not even anyone who could understand, because words seem to fail me.

And not for the first time in my life I find myself wishing desperately for a true soothsayer, a special soul who could open a window to the future and show me what lies ahead so that I could sleep without tossing and turning and live without a pall on even my sunniest hours.

Speechless and without foresight, I’ll keep smiling through.

September

Hi friends.

As I approach my two-year cancerversary, which is Monday, I have some news to share. Don’t worry – I remain cancer free!

As some of you may know, when I was diagnosed in September 2015, Julian and I had been planning to begin trying to expand our family the following summer. I would love to have a girl baby, but would equally love another boy – I just have a gut feeling that our family is not complete yet, that we are supposed to be a quintet.

I, like most other people, was not aware of the effect chemotherapy can have on a woman’s reproductive system, both during and after treatment, until I was diagnosed. That is when I discovered the cold, hard facts about the possible infertility chemotherapy can cause. Still, when my oncologist offered to refer me to a fertility specialist, I declined. Why? Many reasons. Specifically, I already had two beautiful children; I thought “seeing a fertility specialist” meant “freezing my eggs,” which frankly sounded like an awful procedure; and most importantly, I didn’t think infertility would happen to me.

Ridiculous, right? I was diagnosed with cancer at 37; the January before, I learned I’d had gall disease since I was a teenager. Why did I think anything that could happen wouldn’t happen to me? Maybe it’s because of those very things. Like, “Omg I have cancer as a 37 year old vegetarian who managed to bear two kids with only one fallopian tube. Of COURSE I’ll retain my fertility.” In addition, my oncologist put me on Lupron during chemo – a horrid drug that stops your ovaries from working, sending you directly into menopause, but has been shown to “sometimes” prevent infertility. How they determine that, I don’t know, since from what I have heard it’s basically a craps shoot whether you get your period back or not. But that’s not really the point.

Looking back, I wish I’d seen that fertility specialist. I wish I’d gotten all the information available to me. I wish my oncologist – who I love, don’t get me wrong – had said, “If you ever think you ever might possibly want to have another baby, just go see what the specialist has to say.” Because now I know there are other ways of preserving fertility – I read yesterday about a simple procedure where one ovary is removed and frozen, and then the outer layer – where the eggs are stored – is grafted back on to the remaining ovary, restoring fertility. Would I have done that? Yes. If I had a time machine, I’d go back and do it now. But alas, I was in denial. I thought I knew all the risks. I was both right and wrong.

Tired of my oncologist and my gyno both telling me I just had to “wait and see” what my body would do, I finally made an appointment at Seattle Reproductive Medicine (you know, like I should have done two years ago). A trans-vaginal ultrasound revealed my ovaries to be so small they were nearly undetectable. My uterus, while healthy, is a menopausal uterus – small, with a very thin tissue lining. A blood test measuring AMH came back so low that the doctor prefaced the result by telling J and I that it “couldn’t tell you the difference between low egg supply and zero,” but that mine was at the very lowest limit. She went on to tell me that’s not to say I couldn’t ever conceive, but the possibility is “remote.”

Why did “remote” hit me like a bucket of cold water? Low, small, even a percentage number – those I think I could have handled. But “remote” – remote is the snowy woodland where someone freezes to death because she lost her way hiking. Remote is where they used to send the very worst criminals to live and kill each other. Remote is so small it can’t even be quantified. Remote is not impossible, but it’s impossible’s next of kin.

I had previously asked J about adoption – which for some reason, he is not interested in – and between the ultrasound and the blood test I had even had a revelation that perhaps we could get an egg donor and a surrogate and have a baby that is at least a half sibling to our boys. So I had done a small amount of research into that, but even so – even so, I was hoping against hope they’d tell me my egg supply was lowered, but not – not that my chances were “remote.” I’ll be 40 next year – “remote” was already around the corner anyhow.

This was on Tuesday. I cried. A lot. I felt stupid, greedy, uninformed, angry, regretful, ungrateful, lost. For the last two days I have been processing. It’s still not real to me, if you can believe that – somehow, in my stubborn brain, remote is not far enough. I still feel this glimmer of hope. But my logical brain keeps trying to put that glimmer in check. And so I am struggling.

I haven’t told you everything yet, though. And I’m not sure if I should put it down, because we don’t know where we are with it. So take it as that, information, not opinion or decision. Just information we were given from a doctor, information that I will present to my oncologist at my regular appointment on Monday and ask his opinion of.

If they were to give me low levels of estrogen and progesterone – very low, the same my body would be making itself had my period come back – my uterus would rebound and begin working again as though my ovaries had not given up the ghost. Then, if we wanted, we could choose an egg donor, and I could actually carry the baby myself, nurse it myself. Genetically it would not be mine, but who’s to say how much DNA a baby picks up in the womb? Whose blood would be running through its veins? Whose heartbeat would it hear? Whose milk would it drink?

If you are by chance reading this, and you have been diagnosed, and you have not started treatment – even if you have children, even if you think you are done, even if you aren’t sure you ever want them – please go see a fertility specialist. Seeing them will do no harm. Know ALL your options. Regret is a horrible feeling to have after you’ve managed to survive a brush with death.

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!