Swan Song

I’ve thought about writing many times in the months this blog has stayed silent. Each time I went to post, I would talk myself out of sharing. I would ask myself what’s the point in saying anything when things feel mostly the same? Or even if they are different, they aren’t different enough. I’m still sad and angry and struggling to make sense of my new reality. I’m cautious about what I share and who I share it with which is a shift for me. I feel tender to judgment and beat up by my own ridiculous standards to be further along in my grief process. I worry people are annoyed by my lingering sorrow, That no one wants to hear me try to make sense of the fear and the anger, attempting to wrestle my feelings into something that makes any sense whatsoever.

Right now it’s really painful for me to see pregnant women. In particular, ultrasound images, pregnancy announcements, and baby bump progress photos really punch me in the gut, They catch me off guard like a slap in the face. My happiness for the pregnant person is completely tangled in my own sadness that that will never be me. I will never carry our baby inside of me and feel it grow or give birth to it.

Never.

The finality of that is hard to swallow and yet I must try to again and again. I’m not trying to be dramatic. The life we had thought would happen isn’t going to happen the way we planned. And yes, we could adopt. And yes, we’ve looked into surrogacy. And also fostering. We’ve considered being childless, having pets, and possibly an expendable income. We think about all the options. It’s just that we are profoundly sad and aren’t in a place to choose a direction yet. So we feel our feelings, have good weeks and bad weeks, and try to keep talking to each other about where we are at because it’s not always the same place.

It’s getting close to what would have been my due date. That feels strange to say. I feel sad for our baby that didn’t make it and along with it, our lost hope. Some days I just can’t think about it and other days it consumes my thoughts. I wanted to do something to… commemorate seems like the wrong word…mark the experience of having suffered a ruptured ectopic pregnancy and subsequently being unable to have biological kids and the transformation that’s taking place internally so I got a tattoo. Two actually- a black swan and a white swan- that sit above the bend in either arm.

swansHave you heard of Black Swan Theory? It’s a metaphor that describes an event that comes as a surprise and has major impact. So I put the black swan on my right arm, the side where the I lost my fallopian tube and pregnancy to the rupture. The swan image shatters into tiny fragments which feels symbolically accurate to me. The white swan, my transformation symbol, is on the left side, my heart side. I can’t have babies but, hey, I can get all the tattoos I want I guess.

I’m not sure I want to continue blogging but I also feel compelled to share for that small group of women who might be in the same boat as me and feeling alone in their experience. I’m still thinking on it.

(Special thanks to my husband for rendering the swan drawings, to Leslie at New Rose Tattoo in Portland, and my sister and friend C for going with me for moral support.)

After the Horrible Thing, there comes a lot of Awkwardness

Some people have remarked, “You must be sick of being asked how you are.” I am not. Because, surprisingly, not that many people are asking. I’ve gone back to my normal life. I get along out in the world without crying publicly. I talk about regular things like movies and the weather. I’m managing. I’m not a basket case. But I’m not alright either.

It hits me at strange times. Like after retelling my ordeal to a friend who hadn’t read my posts. Like after talking to a pregnant acquaintance and it coming up. Like being somewhere where there are a lot of kids. I love being around kids, holding babies, and entertaining toddlers but it hits me in a different way now because the “what if” hangs heavy on my heart. Sometimes I just cry because a commercial strikes me as sad and I’ve had a day where I’ve seen too many pregnant people. I don’t really understand the psychology behind it all but that’s why I made an appointment with a counselor who specializes in infertility and grief. I do not know how to navigate this.

I think the most awkward situation has been encountering pregnant people. It’s usually a situation where they don’t know what happened to me and it somehow comes up and I see their face turn to horror as the capital A Awkward Situation unfolds. How awful must it be for them to stand in front of a woman who went through some horrific “miscarriage” while they are carrying a baby inside them? I mean, I feel so terrible having them find out about what happened to me. And at the same time my heart breaks because WHAT THE FUCK? WHY IS THIS A THING I HAVE TO ENDURE? But I try to be kind and gentle and reassuring. I do not blame them. I’m not angry with them. Of course I’m envious. I’m human after all.

I wish I was the kind of person who was extremely private. But, uh, I am quite the opposite. I’m a sharer. Maybe an over-sharer. But having shared my struggles publicly has brought a lot of people into my life who are in a similar place. For that reason alone I don’t ever regret sharing because no one should have to feel alone. And I think that by being vulnerable, I’m encouraging other people to do the same.

I know it’s difficult for people to know what to say when someone is having a hard time. So many tell me they are afraid they will say the wrong thing which I think leads a lot of people to say nothing. I have totally said the wrong thing to someone. It was not the end of the world even though I felt terrible and it was absolutely not intentional. I can’t speak for every person who has had a crisis but for me, saying nothing is not the response I need. I’m publicly acknowledging that something terrible happened to me. It’s okay for you to bring it up. It’s okay for you to email, text, call, stop me in the hallway and say, “I’ve been keeping up with what you’ve been going through and I just wanted to say how sorry I am. I’ve been thinking of you.” It’s really that simple. You do not have to fix anything. Please don’t try to. You do not have to give me advice on what I should do next. You don’t have to remind me how strong I am because right now I do not feel very strong and it makes me feel like a failure. That’s not your fault! It’s just how it is. Showing up for someone is not an easy thing and there is no manual on it. But I think most people want to be reached out to, to be thought of, to be cared about on good days so it’s even more needed on bad ones.

Grief is a lonely experience as are health crises, and break ups, and all that other hard stuff. We’ve all been there at one time. We can relate. Maybe you’re the type to call up and ask for help. There are some of us who struggle doing that when we’re in a good place so think how hard it must be when you’re feeling so down. A few friends pushed through my resistance and showed up because they knew I would never be able to ask for it. They’ve admitted they worried I’d think them pushy but honestly, they lovingly forced me to connect with people at a time I wanted to crawl into a hole. Every card, call, text, email, comment on my blog, tweet, or Facebook status meant something to me. Even if you just said you were sorry, it helped. Thank you for showing up for me.

And so, here I am in this complicated place. I appreciate you listening.

More Waiting with a Side of Unanswered Questions

There’s a package sitting on our dining room table unopened. I know what it contains which is why I’m avoiding it. Weeks before during the happy blip of being pregnant, I ordered it thinking it would help us understand the next nine months.

There is no book that will help us with where we find ourselves now. And opening that envelope will just rip me open.

You’d think I’d be used to that feeling at this point but it still startles me. Yesterday was my follow-up appointment post-surgery with the doctor I met briefly before he saved my life and removed my ruptured tube. My anxiety, an emotion I wasn’t intimate with before this last year of my life, was high that morning as I got ready to leave. I had hoped my questions would be answered and that it wouldn’t be all bad news. We’re really weary of the bad news. Mr. Darcy accompanied me and as we pulled into the parking structure I think we both had our own reactions. The last time we were there was one of our worst days. It’s hard to not be triggered.

We rode the elevator and walked hand in hand through the lobby where I had sat in my sad wheelchair, shaking in pain, watching all the pregnant women walk by, as I waited hours for that fateful ultrasound appointment. We checked in at the doctor’s office and sat in the waiting room while pregnant woman after pregnant woman walked in. All in all we waited 40 minutes for the appointment.With each passing minute our frustration grew. To me it just felt so. . . flip. Like no one cared that I had been put through hell no thanks to any of them that worked there. I went to the restroom while we waited and ran into the nurse who had seen me that morning two and a half weeks ago. She looked at me like she recognized me and I tried to keep walking because I didn’t want to talk to her. But she said my name and came over with a look of wonder and concern on her face saying how good it was to see me. I tried to make light of it so I wouldn’t lose my cool. I’m tired of being the center of the scene back there by the nurses station. She said something about how she was glad I was okay and that I was famous around the office. I must have half-smiled and backed away towards the restroom. I don’t really know just that I wanted to get away from her and that conversation immediately.

I don’t want to be famous for what I went through.

No one there seems sorry for not helping me sooner. I had to be wheeled into the goddamned office because I was in so much pain I couldn’t walk and barely could get on the exam table. I had been spotting for three days. I was faint and nauseous. MY BLOOD PRESSURE WAS 82/50 for fucksake! The doctor said she “didn’t know what” she was looking at during my ultrasound. But yeah, by all means, make me wait two more hours for the ultrasound office to fit me in. I’ll just rupture in a room full of pregnant women. No worries.

Excuse me, it’s just that I’ve kind of reached the anger phase of this grief shit.

When they finally took us back to an exam room, it was the same nurse who had caught me in the hall on the way to the bathroom. I thought Mr. Darcy was going to jump out of his chair when she joked about how my blood pressure was much better than the last time. Or when she talked about how mad she was at the ER nurses for not taking my condition seriously. She finally left us before either of us said something we’d regret and the surgeon came in. He didn’t really remember my case even though he had my file in his hand. He wondered aloud where the photos of my ruptured tube were because he could have sworn he’d taken them. He asked me to lie back so he could remove my stitches and when my abdomen was revealed his reaction was, “Hoooo boy! That’s a bruise!” We told him that this was it getting better as it had been deep purple and ran the expanse of my left hip to across my bellybutton. He said it was from a ruptured blood vessel- he must have hit it when they went in that side.

I had a list of questions mostly pertaining to what’s next and what we are going to do about the fibroid they found. He left again to look at the MRI images he didn’t remember I’d had and came back to tell us the fibroid is submucosal meaning it’s growing into the inner cavity of the uterus and has got to come out. It’s about 8-9cm, not 12cm as he previously told us, and it sits on top of my uterus making it dip down. It could be why the pregnancy got stuck in the tube but we don’t know.Apparently that fibroid was visible when I had my CT Scan last year for the cancer but no one mentioned it to me. It was about 7cm then and grew to about 9cm during the first weeks of my pregnancy.

I could have had a bad tube but it’s too late to check that one. He told us to make an appointment with the fertility doctor we saw last year when all the cancer stuff was happening and get more clarity. If (probably will happen) I have the fibroid removal surgery, I need to wait 2 months before that happens (Sept) and then wait 3 months after that to try to conceive. If it looks like my other tube is problematic or if the risk of another ectopic is too great, and we don’t want to waste precious time, they might suggest harvesting my egg and Mr. Darcy’s sperm and implanting it into my uterus. That is, if my uterus is fully functioning after my fibroid surgery. If the embryo takes, hopefully I can carry it to term but I might need a cerclage on my cervix because of my previous surgeries on it from the cancer. I will have to have a c-section.

We’re running a marathon with a lot of hurdles.

We have a series of appointments in late August/early September- one with the fertility doc, two with different OB-GYNs because there is no way in hell I want to go back to that clinic and those doctors and nurses, and another with my gyno-oncologist for my 3 month follow up. I never thought I’d have so many doctors, have had all these surgeries (prior to last year, the only surgery I’d had was when I was 8 on my tonsils), or be trying to figure out how to fix my body so we could have a baby. I took so much for granted- my health, my body, the option to have a baby. I spent so much of my life trying not to get pregnant and here I am, desperate for it.

Last night I finally just succumbed to the sadness and anger and cried my eyes out. The trauma of the rupture day was too tangible after spending all that time at the scene of it. The sadness for what we can’t get back and the worry of what is to come just racked me. I’m not a quitter but I’m going to have to train for this fight. I’m not afraid of the surgeries though I worry about the cost of all this and the toll on my body and psyche. There is a lot ahead of us, so much still unknown, and we’re just trying to make sense of it all while feeling all the grief of what we’ve lost. I just don’t want us to become beaten down to the point where we don’t enjoy our life because we’re so consumed by this.

It would be so much easier if we didn’t want a baby. But we do. And so we keep at it.

Tightrope Walking

It’s been a week since my life blew up, quite literally, inside my body. I haven’t left the house unless you count walking out into the backyard. I haven’t put on a bra or driven a car or slept without waking with a pain in my abdomen or some distant memory of the trauma of last Monday. I don’t have much of an appetite but I make myself eat so I can take my pain medicine. They gave me Oxycodone which I hate. It made me have the angry sads and coming off of it was unpleasant. I’m still very sore in my belly so I take my high dose ibuprofen and take it easy as I can. I cry at random- at a touching scene on the TV, when I walk by what would be the baby’s room, when the delivery guy brought flowers from a friend, when I do too much and get winded. I’m going a little stir crazy and missing out on the most beautiful Seattle weather but the thought of returning to work or being social or even going to the store paralyzes me.

I do not yet have a new normal.

Everything feels overwhelming to me and I care very little for the bullshit of life. There is so much of it and there is nothing like a traumatic emergency surgery and loss of pregnancy to shake the snow globe of perspective. I am waiting for things to settle so I can see clearer. Right now I feel panicky and I try not to let my mind drift there, to the dark place of what ifs and worst case scenarios. There are too many maybes and I’m too tired to play them all out. They do nothing to help me exist in this new reality. We’re trying to just take it day by day, sometimes hour by hour, until we have our follow-up appointment next Wednesday where we will bring all our questions about what’s next.

It’s funny what you think is your worst thing. As a kid, my dad dying was my worst thing. Then I got cancer and thought, wow, this is definitely The Worst. And then I had a ruptured ectopic pregnancy which jeopardizes our chances for having a baby and I’ve got a new Worst Thing. There will always be trouble coming, won’t there? Seven months ago I was worried what my first pap smear results would be after my cervical cancer surgeries. That was our big hurdle then. And we waited and worried and hoped and wondered and tried to heal as we do now. What I said back then rings true again today:

I have never been more acutely aware that the great lesson of my life is patience. To lean into the waiting and the wanting and the wondering. To trust the process and let hope buoy me when I feel myself spiraling into what ifs and worry.

I have no idea what’s next. Do we ever? I used to think all my plans and lists would keep me safe. My coping mechanisms that served me all those years are laughable to me now. Oh honey, I want to tell my younger self, there is no such thing as safety. Life is a tightrope and you can spend your life building a net without ever getting up on the wire. Or you can take it step by delicate step, balancing, falling, and getting back up again and again. But you can’t look down. Only out and up because, sweet girl, the views are spectacular.

“Life is either a daring adventure or nothing at all.” – Helen Keller

There was a baby. Now there is not.

My period was late.

I took 3 tests, all negative, but after being 5 days late, I took another. That one said ‘pregnant.” A visit to the doctor’s office confirmed it. We were pregnant after only trying for two months. For about two weeks we got to pretend to be normal. We told a small handful of family. We started to clear out the baby’s room. I took a lot of naps. I was 7 weeks along on Monday.

I was at dance class when I started to have abdominal pain. I felt light-headed, queasy, and wondered if this was the beginning of morning sickness. It felt terrible though- like I was shaking and breaking out in a cold sweat. Some friends at dance helped talk me through deep breathing so I could get steady on my feet. I ended up waiting in my car until Mr. Darcy could come meet me. I didn’t feel safe to drive and the earliest the doctor could see me was 1pm. I was writhing around in pain, the jostling of the car made me feel worse. It was so bad that Mr. Darcy went and got a wheelchair from the doctor’s office so that I didn’t have to hobble from the parking lot.

They couldn’t find any sign of the baby with a trans-vaginal ultrasound so they drew blood then told me the main ultrasound office would see me at 3pm. I had to wait an hour and a half while countless pregnant women passed me by, sitting there in increasing pain and fear, wondering what was going on with my body and who would help me fix it. By the time 3pm rolled around and we were in the ultrasound office, I could barely hold the pen to fill out the paperwork. The pain was so all-encompassing and I feared I might pass out. I finally gave into the agony and moaned out loud which drew looks from happy pregnant people sitting around the waiting room and the staff working behind the desk. Mr. Darcy called out in frustration, “Can someone please help my wife? She is in extreme pain!” I recall trying to get up on the exam table and fainting and later when they couldn’t find anything in the ultrasound, they wheeled me to the bathroom hoping that emptying my bladder would help. I never actually made it inside because as I was sitting there, I told them I was going to faint. My ears were ringing and the room was spinning. I threw up and peed on myself simultaneously while I passed out. My clothes were soiled and I was disoriented and mortified. They gave me scrubs to change into and while we tried to get me dressed, I passed out again.

The pain had pushed my body to this violent reaction. I had no control over it and was petrified.

They finally called down to my original doctor’s office and sent some nurses up to transfer me to the ER. All they could see on the ultrasound was a fibroid mass that is about 12 cm. I’d never had a fibroid before and no one, in all the countless exams I’ve had to endure, has mentioned it to me. It was blocking their ability to see my right fallopian tube which was where our baby had set up residence. Being about the size of a blueberry, it couldn’t make it in the small space and was rupturing. I’m not sure exactly when the rupture occurred but all that agony was because of it and the subsequent internal bleeding that followed the rupture. As they carted me down to the ER, I passed out again. Mr.Darcy said I had my eyes open and was twitching. He thought I was going to die. In all I threw up/peed myself/passed out a total of four times. I remember being in the ER as they waited to open a room to me and making Mr. Darcy turnĀ  me on my side even though the pain was excruciating because I was going to throw up again and I was afraid I was going to choke on it. The nurse seemed unphased as he called out for help. They hooked me up to saline and got me some painkillers finally which my body ran through. The shot me up with Ativan so they could put me through the MRI. Every time they had to transfer me from one bed to another the pain increased. It wasn’t until after 12am that they took me into surgery. At that point I just wanted to not die and to not feel that kind of pain. It had been going on for over 12 hours and I was beyond exhausted. I felt so bad for Mr. Darcy too who had to witness it all. It scared the crap out of him but he never left my side.

They wheeled me out of emergency surgery and to my own room around 4am where Mr. Darcy was nodding off in an uncomfortable chair. I didn’t really sleep- hooked up to a catheter with these pressure bands around my legs to help with blood clots (I had lost two liters of blood and they had to do a transfusion) and the unfamiliar sounds of the hospital with the nurses coming in all the time to check my vitals. I stayed there for most of the day, attempting to pee on my own, eat a little food, take a small walk around the ward. I just really wanted to be home so I could rest. My doctors visited and filled in some of the blanks for me. The doctor who performed my surgery, that I had never met before, said it was one of the worst ectopic pregnancy ruptures he had seen and he didn’t know how I held out so long. My original doctor who missed all the action (she’s 38 weeks pregnant) sat with me while I cried and talked me through what’s next. It doesn’t look hopeful for us to conceive and carry our own child. I’m down one fallopian tube. I have an increased risk of another ectopic. I have a 12 cm fibroid on my uterus that needs removing and that surgery could jeopardize the uterus plus set us back more months for recovery. If we did attempt pregnancy, they’d suggest having the egg fertilized and directly put into the uterus so as to avoid the risk of another ectopic. By the time I recover from this surgery, have the fibroid surgery, recover from that, I’d be nearing my 41st birthday. Can my body take all of this? Even if we were to get pregnant, could my cervix hold? It’d be a very difficult pregnancy.

Right now I’m sore from 3 abdominal incisions and from barely being able to get around on my own (I’m stuck laying on my back a lot of the time). The medicine for the pain doesn’t give me restful sleep. I have no appetite but I’m forced to eat when I take the pills. I’m emotionally all over the place- circling around anger and sadness over and over again. I’ve got left over pregnancy hormones coursing through my body while my uterus sheds- constant reminders of the baby that didn’t make it and the big unknowns of what’s next for us on our journey to become parents.

I wanted to write about this even if I’m unable to be eloquent about it because I feel myself needing to hide away. It’s very hard to process this and it’s going to take a lot of time. We’re doing our best to lean on each other and are very grateful to the outpouring of kindness from everyone. A year ago we were facing my cervical cancer. I never thought something worse could strike us down but it has. It’s all just too much to comprehend honestly.