This kind of talk clears a lunch room.

I have named my fibroid Francis. I figure I spend a lot of time thinking about her, she should have a name.

Francis is 7 cm. She sits comfortably (for her) on the top of my uterus. My uterus that measures about 7.6 cm in length. She’s really made herself at home, even embedded herself within the lining. Her particular placement makes it so there is pressure on my bladder, so that’s fun to think you have to pee more frequently than you actually do. So not only is she constantly reminding me she’s there with that nonsense but once a month she makes what has been since I was 13 an unpleasant 4-5 days now an acutely painful 7-9 days.

Why yes, Francis’s presence makes my period worse- the cramps, the bleeding, all of it. Oh the bleeding! Day two requires high alert status, armed with a pack of super tampons and a pad, because Francis really amps it up once she gets her groove. So much so that I wake up in the middle of the night in a panic thanks to the heavy flow. Maxi pads come with a certain level of indignity.

On top of that, I keep thinking what’s the point of keeping my uterus when all it does is give me a monthly reminder that it can’t do the one thing it’s meant to do which is to grow a baby. I am planning on talking to my doctor about having a hysterectomy next year, at least the one that takes the uterus but leaves the ovaries. It was recommended by my gyno-oncologist during the cancer summer just to be extra precautious. Even though my paps have all come back negative with no signs of HPV since my last surgery, the monthly hassle of Frances makes me think “why not?”. Maybe it will help me close that chapter completely. No babies coming out of this body. The end.

That still makes me sad. I don’t know if I will ever not be sad about it. I will never not be surrounded by Facebook ultrasound photo announcements and baby bump Instagram pictures and images of adorable children who resemble their parents. My current coping mechanism is to hide those folks on my social media when it gets to be too much and to visit those sites less. Maybe someday that part won’t be so hard? That’s my hope. It gets a little better as time goes by but it’s still a sharp sting. I continue to worry that people will think I’m a bitch for having to hold my boundaries to protect myself but I’m less and less concerned about what they think. Taking care of me doesn’t mean I don’t care about them or am not happy about their baby.

I’ve been thinking about starting up a support network for couples experiencing this particular situation- those that can’t conceive for whatever reason and are grieving the loss. I don’t know of anyone would want to meet up and talk but I know it helped us to do so with another couple recently and it got me thinking. It’s a pretty overwhelming and lonely place to be. Maybe meeting more people like us would give us community and a sense of belonging?

Anyhow, hello from me and from Francis. (That bitch.)

 

Advertisements

It’s Been a Year

July is not my favorite month.

Two years ago, I found out I had cervical cancer.

One year ago (today), we lost our pregnancy to an ectopic rupture.

These are not life events I have easily bounced back from. At the age of 19 when my father died, I thought that was the worst thing that could ever happen to me. At the time, it was. But that grief was different. It stretched like taffy, pulling me to a breaking point again and again. But this experience? It broke me. Shattered me in splinters of my former self.

The last two years have been the happiest and the saddest of my life. Buying our house, finding out I have cancer, marrying Mr. Darcy, discovering I’m pregnant, losing the baby in an emotionally and physically traumatic way, Very high ups and downs. Since October I’ve just been trying to keep things slow, steady, routine, calm. As calm as can be when you’re trying to wrap your mind and heart around the paralyzing fact that you won’t be having biological children.

There are so many things in life I took for granted and having kids was one of them. I worried that I wouldn’t find someone to have them with or that I was too overweight  or I was getting too old and then, after cancer, I worried I about being able to carry it to term. Years ago, before I even met Mr. Darcy, I thought about becoming a foster parent or adopting in that far off way you think about alternative plans. Never concretely. Never a Plan A. It’d be different if I never wanted biological kids, never wanted to experience pregnancy, hadn’t found a person I wanted to combine DNA with to make a baby. But I did want all of those things.

And when, after countless visits to numerous doctors, we looked at each other across the quiet car in a dim parking lot, heavy with medical information ripe with risks, we knew we’d reach our end. It was just far too much- too costly, too risky, too scary, too everything. For the last nine months we’ve let that finality wash over us- waves of grief, regret, and longing-  standing in our own ocean as the seasons have changed, waiting to feel ready to move to shore.

There are always options. But when you’ve lost the opportunity to have your own biological kids, getting excited about the alternatives is extremely difficult. It’s not like we clap our hands and say, well, let’s move on! Because for a brief time we had that singular joy of being pregnant. We had picked out names for a boy and for a girl. We were preparing the nursery. Loved ones knew and were hopefully excited for us. The pregnancy could rupture in a day but the aftermath lasts a very, very long time.

So today, we’re going to spend it together away from work and phones and obligations. We’re going to get ourselves near a big body of water and linger. We’re going to enjoy the sunshine and the quiet as we honor what we’ve been though and contemplate what’s next.

 

Living In the In Between

I haven’t wanted to write. In the last year I’ve closed myself up and tightened my circle of trusted confidantes which has essentially silenced this blog where I’ve (over) shared for nine years. It’s just all been so much, so nuanced, so extremely personal, that I couldn’t find the words to share it with you. But I feel compelled to try because I’ve been looking around for other stories like mine and I’m not really finding them. I know they have to be out there but is anyone talking about it? About what comes after losing a pregnancy and discovering the odds are stacked too high against you ever having a biological kid? Because there is this limbo between cataclysm and resolution. The in between is a whirling dervish of emotion. And it’s really fucking lonely and sad and maddening and worrisome and, at times, cautiously hopeful. Maybe things will work out even if everything I thought I could have blew up quite literally inside of me and now I have to imagine alternatives which remind me of what was supposed to happen.

Suppose to is make believe.

My reality right now is: sometimes I can see a baby and even smile at it without wanting to cry. But then I see a newborn with the name we were going to call our kid and I’m gut-punched all over again. I think I’m getting better but then something reminds me that I am not quite there and I JUST WANT TO FEEL BETTER. These things take time but I’m sick of it. I feel weak for “still” being upset even though I don’t cry as much. I worry my friends are tired of my problems- first cancer then baby loss then realizing we won’t have our own biological kids has really made me a drag (hasn’t it?). Maybe it doesn’t matter because socializing takes a lot out of me now. I don’t want to not be asked about it but I also don’t always want to talk about it.

It’s just so convoluted and messy, you guys.

Even if I believe deep inside me this will all work out somehow, that maybe someday years from now I will see this all as a blessing (really?), right now and for the past year it’s been just terrible, awful, and one of the worst times of my life. But I’m going to try to talk about it more here because what if there is someone out there in a similar predicament who feels frustrated and alone? Maybe hearing my story will help. I need to do something positive with this shitty situation. It’s time to make lemonade out of these lemons.

 

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.

Have 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.)

The Answer to the Question

“How are you?” is “I’m not okay.”

The fundraiser I worked on- worked three weeks time in the past two weeks- was Saturday. It was apparently a success. We raised money. People had a good time. I can’t even wrap my head around it because I’m exhausted to the bone. I spent the last few weeks living and breathing that event, working 12 hour days, attempting to push down my feelings about the reality of my personal life while giving work 120%. I wasn’t always successful at keeping a lid on my emotions as evidenced by the crying jags in my cubicle and the meltdowns I had in my car. I wasn’t handling stresses I normally could roll with in the same way. I went to my boss on a daily basis and tried to quit. I hit the bottom of despair and convinced myself that I am not good at what I do. On top of everything I was sitting there sobbing, thinking how I now have to find a new career at 40 years old. Everything was overblown for me. All my rational thoughts were used up on the planning of the event.

Then yesterday, the Monday after the event, I had to go to the doctor before coming into the office. That appointment was with a surgeon, one recommended by other doctors, one that could perform the removal of my fibroid. Except, after talking to her we were even more convinced that trying to get pregnant is not in the cards for us. The surgery is risky- they could try to do it robotically but it’s very likely they would have to open me up if it started bleeding too much (opening up means longer recovery) plus the fibroid penetrates the uterine lining so sewing me up is challenging and later if I did get pregnant (most likely after costly IVF), I run a risk of rupturing while carrying our baby which could endanger both me and the child. My left tube may or may not open up with the removal of the fibroid. Darcy has had some time to process all this while I’ve been buried under work and he’s still very sad but he’s also more sure the right thing to do is to look for alternative ways to be parents. After watching me rupture, lose our baby, bleed internally, and get negligent care, he’s very hesitant about me having any more medical interventions. I can’t blame him. If I had to go through watching him be in distress like I was? I wouldn’t want him doing anything drastic either.

So yesterday I arrive at the office after the doctor’s appointment where I had spent the entire car ride over bawling my eyes out and everyone was smiling and saying “congratulations” and saying positive things about the fundraiser. Except I didn’t care. In fact, every congratulations felt like a punch in the gut because the only thing I was thinking about is how I will never get to be pregnant or have a child that is made up of Darcy and me. I kept trying to hold it together and smile but I have no poker face and, well, it’s kind of hard to hide the fact that you’ve been crying when your skin gets all blotchy red and your eyes are big puff balls.

I don’t know how I will get through this though I know I have to somehow. I’m the most sad I can remember ever being. It’s different from when I had cancer because that was a scared sad. This is just a deep, deep sorrow that feels like something is tugging on my heart. And I know I have to feel it all to keep moving through it. And I know that someday it won’t feel so tragic, that maybe a happy ending could find us after all. But right now I am worried that this is going to break me in so many pieces I won’t be able to put myself back together. That I will be changed so much I won’t recognize myself. That I will become a shell of my former self- all hallowed out and sad and jealous of women who get to have babies. A part of me has died and I’m trying to figure out how to survive the loss.

I’m writing because I don’t know what else to do. Talking about it hurts. Seeing the look on people’s faces when they hear about it is too much to handle right now. It just reflects back to me the reality of what I’m trying to swallow.

I don’t want any of this to be true. But it is.

(I’m turning off comments on this because I don’t want anyone to feel like they have to say something comforting. It’s an awkward situation. A fucking shitty, awkward situation. And you’ve all been so nice to me already. You don’t need to do more. )

Can I order a new reality?

In the past month I’ve been to three OBs, one gyno-oncologist, one fertility doctor, to radiology and ultrasound, and a fertility support group. To say we’re overwhelmed with information and feeling would be an understatement.

The reality of our situation hits us in waves. Some moments we can find peace and hope. Others we are curled in a ball on the bed crying into our pillow. We’re up. We’re down. We’re resigned. We’re angry. We’re always, always sad. After all those experts took a look at my case, examined my uterus, the stupid fibroid encasing the top of it, my cancer history and sub-par cervix, and my god damned closed left fallopian tube, they all said the same thing: the fibroid has to come out and you’ll have to do IVF if you are going to carry your baby.

But one doctor at a different hospital was very frank and blunt and laid out the risks involved with such a surgery. The likelihood that I would have to be cut open is high instead of doing the less invasive surgery robotically. That would increase my recovery time as it’s harder on my body. Removing the fibroid is tricky and mine is large so I could start to bleed while they attempted it laparoscopically and then they might quickly have to open me anyway. Even after that surgery and subsequent recovery, there is no telling if my left tube would open OR if it would be safe for me to carry a baby to term. The uterus could rupture while I am carrying our baby which is very risky for me and for the baby. What percentage are these risks? I don’t know. But they exist and are making us very concerned about moving forward with this path towards being parents.

After the appointment with the blunt doctor (we appreciated her candor and time), we sat in the car in the parking lot and talked about what to do. Mr. Darcy felt that we should not move forward with me having the surgery and trying to carry our baby. He thinks it is too risky and he doesn’t want us to go through that. He basically said, “You are the most important thing to me and I don’t want to lose you. We can find another way to be parents.” (Everyone I tell this to goes “aww” or tears up.) I’m pretty sure he has some PTSD from having to watch me during that rupture day and I don’t blame him. He’s got a lot of anger towards doctors who were negligent, rightfully so. I’m mad too it’s just that I’m more sad and I have to spread what little energy I have to trying not to fall completely apart. I mostly agree with him on this as I’m not sure what my body can do and I’ve lost faith in it. What if I went through with the surgery and we paid through the nose for IVF and I still didn’t get pregnant? By then we’ve likely lost a year, we’re closer to 41, and if it doesn’t work we’ll have to start anew on a different path, all of which are time-consuming, lengthy, and costly.

Depending on the day, hell, the hour, my decision changes. It absolutely breaks my heart to think that I cannot carry our baby. That we will not have a child with our genetic make up. Please don’t tell us how we will love an adopted baby just as much even though you mean well and you’re probably right. We’re really sad and mad right now and trying to wrestle with the reality that we can’t be parents the way most folks can. Please don’t tell us about surrogacy unless you have gone through it. It’s complicated and costly and difficult to get support with that option. This is an uncomfortable situation for everyone. No one knows what to say and all the advice is well meaning and most of the time we appreciate it. Sincerely, we do. But there’s a huge piece of this that makes us feel really, really alone and lost and like failures, and so angry at unknowns and bad luck and EVERYTHING. There are parts of this that we, as husband and wife, are unable to even support each other through. Grief is often a solitary process.

We’re still looking into the options though not really the one where I carry the baby as all signs point to that being not the right path. We’re still looking to talk to adoptive parents either through foster-to-adopt or private adoption and anyone who has done surrogacy. We appreciate your good thoughts and sympathy and your well-meaning advice. I might not respond to every email right away but I will eventually. I am buried at work under a 400-person gala fundraiser that is sucking the life out of me. I’ve hardly had time to feel my feelings on this because I’m working my ass off and have no spare time. I cry in the car or on my morning walks and then I get back to business because this event isn’t going to plan itself despite of me wishing it would or the numerous times I’ve walked into my boss’s office saying I want to quit (she refuses to entertain these dramatic outbursts- luckily we’re friends).

I probably won’t be writing again until after the fundraiser. That is, if I survive it, or if I’m not crumpled in a ball in the corner having a nervous breakdown.

Crossroads

Last week we had appointments with a new OBGYN and a fertility doctor as well as enduring an hour-long ultrasound appointment (where they put us in the same room as the day I ruptured). Yesterday, I took myself to radiology for an hysterosalpinogogram or HSG as ordered by my new OB. An HSG is where they fill your uterus with contrast dye to get a better look at it and the fallopian tubes. Or in my case, the left fallopian tube as that’s all I’ve got left. To say this is an uncomfortable procedure would be a bit of an understatement. Filling a uterus that quickly with liquid causes it to severely cramp, to the point where I was doing deep breathing and at one point said “shit” pretty distinctly because OW.

But that wasn’t the worst part. As the dye filled my uterus and we watched the screen, it was clear even after pushing more dye into me that none of it was making its way into my left tube. My left tube is not open which pretty much means we can’t get pregnant naturally. Maybe my right tube hadn’t been open either which is why our baby got stuck there. It’s not like they check these things before they tell you to go ahead and get pregnant. So much is left up to chance and we just seem to have pulled the short straw when it comes to fertility.

As I laid there on the cold steel table with my legs bent and contrast dye leaking out of me, looking at the image of my uterus and that god damned useless left tube, reality hit me and I started to cry. I have endured countless indignities and disappointments in the past 14 month and for what? To come to this hard truth as I lay naked from the waist down dripping on a towel and crying in front of three women.

I feel like a failure. Like my body has betrayed me. As if I am disappointing not only myself but my sweet husband and our families because my body can’t make a baby without medical intervention. I’m 40 1/2 years old so time is not on my side. I have spent my entire life knowing that I want to be a mother but never fathoming that the choice would be taken away from me because my body can’t do the job. I foolishly believed that even if there were complications, THIS would not happen to me. Over and over, I am reminded that life happens with or without the plans you’ve made.

So we are faced with choices, all of which come with their own difficulties. Do we take the path towards IVF meaning I  will have to get the 7cm fibroid that is sitting on the top of my uterus removed and wait 3 months before starting the laborious IVF process which has no guarantees for producing a child and is very costly? Or do we decide not to medically intervene, let go of the want for our own biological child, and start the long process of becoming foster-to-adopt parents- enduring months of training, home visits, scrutiny, soul-searching, to hopefully be placed with a child that will not be taken back and put with birth relatives after we’ve attached ourselves to him/her? Or do I just get the hysterectomy and we adopt some dogs and take that trip to Paris and grow old together with no children to raise?

We’re overwhelmed and conflicted, feeling so much pressure to make the RIGHT choice as we grieve this huge loss. We also don’t have that much time because if we are going to do IVF, I’ll need to have that fibroid surgery right away. The clock keeps ticking and I wish I could rewind time and change this. But here we are, at a crossroads, pondering which way to go.

Right now we need to do some research about foster-to-adopt and IVF. We really want to talk to people have lived through both- the good and the bad stories- so we can more carefully weigh these options. If you have any experience with either or know a blog, a friend, a family member who has done any of these, we’d welcome the chance to hear their story.