…and I continue to not give a fuck

It’s been one week since I first took the Femara. The sense of futility about this step I willingly chose to take overwhelms me and I sit here on my dusty couch wondering if I’ll do it again next month. I don’t want to facilitate the fertilization and implantation of yet another bad egg…is that what I’m doing? And the uncertainty feels like a joke so I yell at my neighbors as they pass by my window as I sit here in my underwear at 2.30 on a Friday afternoon. I sort of feel drunk, and I haven’t touched a drop of alcohol in 13 years and 4 months and 4 days…

Scruffy belches in my ear. You’ve never been in THIS place before. Maybe that’s a little strand of hope…but really, fuck hope. I was hopeful when my perinatologist told me Molly’s 10mm cystic hygroma “could resolve itself” (for those of you just tuning in, it didn’t and she died–with 10mm, she didn’t have a prayer). I was hopeful when they told me her diagnosis was a fluke (it wasn’t, my eggs were shit when I conceived her and now they’re close to three years older than they were then). So, here I am in all my hostile glory and Scruffy just passed out from pills and a couple 40 ouncers and I’m here alone crying. When he comes to, he won’t remember a thing.

Oh, Geoff, I am so so sorry and I love you so so much. 

Weight has been dropping off of me. My face looks gaunt, my mother tells me in her usual hypercritical fashion. Maybe this Femara shit should be contraindicated for schizoaffective patients? Still, mentally ill woman can make their own choices…can I be trusted? All signs point right to zero but as the title suggests, idgaf.

blissful dreams and the saddest awakening 

I am sobbing; my grief has become such a big part of who I am that I’m not even sure what’s left of me. This morning I dreamed about my little sister, who we lost in 1996 from complications from a bone marrow transplant (she had myelodysplastic syndrome). She was a month shy of her fifteenth birthday. It’s been so long that the memories I have of her could belong to a completely different person.

The last time Meg visited me in my dreams was the night between the two days of my D&E pregnancy termination. They had stopped Molly’s heart the first day. In that dream, Meg appeared as a young child, clad in red footsie pajamas. This morning she was all grown up as if she’d never left me. We were hanging out at the beach, having fun. The way things were supposed to be; the way things never were.

It was good to just have a friend. I don’t remember the last time I have had fun.

My body feels too narrow, like my skin could burst open any minute spilling sorrow on the crisp white sheets. My sadness makes my friends uncomfortable and I get the unmistakable feeling that they’d rather run from me than spend another awkward moment in my presence. If I have a healthy baby will the world take me back?

No, I imagine it wouldn’t.  



moods and memories 

Time slowly drips down the yellowed walls. Another day stretches out in front of me, ten days past my ovulation and waiting for my period to show. I’m not knocked up this cycle, believe me when I say I just know. I’ll start the Femara 3 days into my bleed, and I am terrified. 

I got an email from one of my oldest friends on my birthday, and just today sent my awkward reply. Mind you, this is the friend that just won $15 million on a fucking SCRATCH TICKET, so wtf do I write in response? I complimented her on her beautiful children (knife to the heart), and demurred when it came time to answer her question. So what’s going on with you? Well, girl, I wake up in the morning convinced that I’m waking up from a nightmarish gynecological surgery and silently screaming my baby! and I reach for my bbt thermometer so I can monitor my ovulation and then I think so should I even bother with peeing on a stick? and the weight of my existence crashes down and I know I’ll spend another day broken and probably won’t leave my house. My husband comes for a quick lunch and worry furrows his brow and even though he’s 47 years old I see an injured little boy trapped inside of him and all I can say is, I am so so sorry, my ovaries are fucked up and the house looks like a trashpit and all of it, it is all my fault. 

I think there will be better days ahead. The amount of time I may spend waiting to see Molly again scares me silly. What if I live another FORTY years? I remember before my termination there was this one night and I was laying on the bathroom floor of our shitty old apartment and Geoff came in to check on me and I was screaming, I want to go with her, I want to be with Molly! I think I broke his heart a little and that was the absolute worst I have ever felt in my life.

So, dear friend, you will not understand any of this so I will say I do a lot of writing and I pray for the better days but to be perfectly honest those good days won’t be quite as good as your good days (I’m so glad you had fun in Aruba!) and I kind of am not sure who I am praying to anyhow. Don’t worry, I am fine and no, I’m not planning to go back East anytime soon but if I do ever make it back to Boston I’ll totally call you right away. RPL has taken everything from me. Write back soon!

And I lie back on the couch and I cry and I cry.

when you open your eyes and it hits before your first breath…

I am irritable and nervous. The sun is already shining hot, I am home alone wishing for a friend. And my ears ring with the sound of my unicorn galloping full speed into disappointment and grief. I cannot visualize winning this full-scale war I’ve waged against my broken ovaries for years.

My mind races; perhaps I need to bump my mood stabilizer. My reflection in the window shows a skinny girl with a head too large for her frame, stretched out on an unmade bed with greasy bangs sticking to a long and narrow face. I feel a pang of sadness–years ago I was an unconventional beauty with flashing dark eyes and the rounded hips of excessive fertility. I waited too long. Unable to place a finger on which physical attributes now combine to make me look old and weary, I let a tear slide down my cheek. Letrozole, 2.5 mg. Take 1 tablet by oral route daily for 5 days days 3-7 of cycle. Can these stupid, possibly impotent, little pills bring redemption? 

I’m 9 days past my ovulation, wondering if I’ll randomly experience a pre-fertility treatment miracle. Laughter echoes in my ear. I could kill ALL of this by taking one of the 50 home pregnancy tests I keep stashed in the bathroom but I won’t. The cat curls up under my chin, as always, desperate for affection. 

And I hate hate hate this, I’ve been doing this for years and it wears me down and from now on I’ll go it alone with only Geoff by my side if I can somehow not drive him away with my vitriolic heart…

God laughs, the same God that took Molly and cursed my body to cling to her so she had to be ripped brutally from the comfort of my womb when I loved her so very much. The same God that took my sister when we were both only children. I’m so so sorry, Molly. I’m so so sorry, Meg. I would have done anything to save you. The stray sunbeam that dances over me makes me think of fire and I close my eyes, knowing sleep will come soon. Please visit my dreams, all my loved ones; I’m still trapped here. Here on Earth, I’ll move forward alone.

and you move past history how?

I’m antsy as hell waiting for this cycle to end so I can start my Femara cycle. I’m not letting myself blow glitter, though. I know that my best odds are still very low odds, and above all I am a realist. Thirty-nine years old, trouble conceiving plus recurrent chromosomal losses since I was thirty-five … But I can still hope for a miracle, can’t I?

I hear a voice in my ear. Miracles are for other people, never you. The disembodied voice cackles and I’m momentarily disoriented. I’ve seen DOR women find success with oral meds. I’ve also outgrown two infertility forums, the last one standing, everyone else bringing home rainbow babies while I wonder if my turn will ever come. And I’ve become angry beyond words, bitter and hateful of my lot in life. All I want is this one normal thing…

I was so happy when I was pregnant with Molly. Confidently, we announced at 12 weeks gestation. My dad was ecstatic, already looking into buying plane tickets for the month I was due. I brushed off my mom’s pessimism…I don’t want you to get too excited, she said to me. There are so many things that could go wrong.

I wish she wasn’t right. I think that was almost cruel, that one statement that planted a seed in my head that germinated and grew into an epic nightmare. Every moment of my NT scan is branded in my memory, sore, infected…10 mm cystic hygroma. Hydrops fetalis. Heart defect. If these terms are unfamiliar to you, consider yourself lucky. Molly had a slew of fatal defects, obviously caused by a chromosomal abnormality like Trisomy 21 (Down’ s Syndrome). People see little videos of adorable, affectionate kids with DS but that was not our daughter’s fate. Down’s is not just intellectual disability; it can cause severe and fatal medical issues as well and by our 16 week scan it was evident that Molly would not survive childbirth. The fluid building in her abdominal and chest cavities would severely restrict organ development. Her lungs would never develop and outside my womb she would never be capable of drawing a single breath. I had to choose termination, my value system would never allow me to continue her suffering.

I loved Molly with every cell in my being. And now that she’s gone, I’m always going to be a little bit broken.

fire

Maybe I’m supposed to stay in this town where there is so much suffering. Each time I emerge bleary-eyed from my apartment, I wrap my cloak of loneliness around my shoulders. I straighten my spine until it is stiff and haughtily shake out my dark hair waiting to challenge the patrons of the streets of Olympia to comment on the grief I emit from every single pore in my once unmarked skin. I project hostility to potential friends, I see empathy as pity and retaliate with wrath. As a child I had temper tantrums; my mom would say someday you’ll have no one but yourself and she was right. My words cut like daggers, and my eyes glitter with hate. 

So I try not to go out when I’m like this. I hole up with my cracked smartphone, my shitty WiFi connection, and my books and records and I try to be invisible but I get in trouble anyway: firing off nasty emails, snarky posts on message boards, blistering comments on Facebook in response to innocently posted videos of a stand up comic doing a routine called, “What People that Don’t Have Kids Will Never Understand” posted by one of the very few women in town that is still kind to me after I announced my tfmr… She doesn’t know we’ve been trying for the two years since, about the miscarriages and PTSD. She doesn’t have to.

And I think to myself, if I get pregnant again will ALL of this just go away? Not when a positive pregnancy test means nothing, certainly not that I will carry past nine weeks or eighteen weeks or any time at all. With infertility and repeat loss, the gentle irritability of My hypomania blossoms into unchecked rage, a palpable red energy that burns and stings. I swallow my pills and close my eyes and I wait and I wait and I wait…

fuck old times

My post-RE-consult euphoria left like a thief in the night. I awaken with fat tears coming from my dark eyes, dribbling a path towards my pillows. I’ve had this dream before: me, a prodigal daughter returning to Boston, calling old friends but no one wants to see me. I remember all of their phone numbers but we haven’t spoken for years. Behind my closed eyes, I see my smartphone screen registering gibberish as I try to reach out after years of absence.

I think it was the photo I saw on Facebook last night, my childhood friends reunited and posing on the beach with their gleaming-eyed children. That sense of missing out on the life that was promised me. I want to be part of that so badly that it must have drilled itself into my subconscious, leaving a path for the loneliness to come streaming out in the images and sounds that echo through my dreams.

I haven’t really spoken to anyone since I admitted to my friend that sometimes I hear voices. She hung up on me. This isn’t my fault! I want to scream. It’s like having diabetes or high blood pressure, I need to take meds. But it isn’t, not really. Once you take a breath, spit out a word that starts with “schizo-“…I guess after that, you can never go home again.

I wonder if Molly were in my arms, her black hair shining blue in the sun the way mine once did, my freckles darkening on her pudgy cheeks–I wonder if I’d be redeemed.

I heard from a couple girls when I brazenly announced my tfmr on the Facebook. We grew up good Democrats, and they praised me for sharing my story in support of Planned Parenthood. But they didn’t say they were sorry. That they thought I may be hurting to lose a sick child. Everything was strictly political and I kept my chin from trembling but in my gut the anger grew into the fierce bitterness that makes it so hard to have friends today. How dare they, with their perfect little lives? Fuck the past, fuck Massachusetts. I carried on with my head held high, tossing my long hair insouciantly with middle finger extended to the cloudy grey skies. 

Today I am broken. No one is gonna fuck with me again.

me, eeyore.

I refuse to entertain fantasies that Femara will get me a healthy baby. I’ve seen it happen to others, but this is me, Eeyore, the eternally pessimist. I am hopeful tho, that having a new plan will snap me out of the depressive funk I’ve been mired in since my last miscarriage. 

So I woke up hypomanic, gabbing away at a million miles a minute and dropping the remainder of my birthday money on expensive cosmetics. I had meant to squirrel the money away for fertility treatments and being a slightly-in-remission schizoaffective bipolar, I failed utterly. These are red flags, and I made sure to alert my psych to this sudden emergence of symptoms. I cannot lose control right now; the future of Europe hangs in the balance (if you get that reference, let’s make friends). 

I picked up my letrozole this afternoon, along with my chill pills. It seemed an appropriate juxtaposition representative of my current role as a mentally ill infertile. I would say that the majority of women I’ve talked to facing infertility, loss, and the prospect of ending up childless deal with a considerable amount of anxiety. Perhaps they aren’t completely incapacitated by panic in the way I’ve always been but hey! Drink till it’s pink, pills until positive.

I am half-joking. Tranquilizers aren’t a risk most women should take while ttc (trying to conceive) but my reproductive psychiatrist has okayed low dosages until I’m pregnant (IF it ever happens again). If I get knocked up, I can take them occasionally but they do cause birth defects and I don’t want a baby born addicted. These are waters I’m treading <i>very</i> carefully and am extremely closely monitored.

I wind up Molly’s music box, a stuffed hippopotamus named Piggy. I’ve had Piggy since I was a toddler and he still sings You Are My Sunshine. The night before we stopped her heart, Geoff and I snuggled up with Piggy on my bump and played him for Molly. Because we loved her. Because we wanted her to know how sorry we were. And as loquacious as I am when on an upswing, I just didn’t have the words.

Even through my mood swings, the sorrow is always there. 

and the verdict is…

My appointment with the fertility specialist went perfectly. I had been so fucking nervous, scared that my mental diagnosis  (schizoaffective, bipolar type) would slam yet another door in my face. The doctor was unlike any doctor I’ve seen since I first sought a pre-conception appointment with my GP at thirty-five. And I’m a strong-willed, difficult patient, basically walking in off the street with an Interwebs researched plan and a list of demands. She took it all in stride. I think I love her.

My husband took off work to accompany me to the appointment. He really is a great guy and didn’t get frustrated when I started wailing at him for being unshaved and sporting his work clothes–since he is a screen printer and it is a hot day, he was sporting camo long shorts covered with ink and emulsion  (the emulsion stains his clothes blood red, so he basically looked like a transient who had just butchered a dead cow or something). The waiting room was devoid of patients; it was lunchtime, and I had anticipated encountering at least a couple preggos (ahem, trigger city).

So a medical assistant took my vitals, my normally treacherously low blood pressure was through the roof. “I’m not worried,” I told her, “it’s usually very low but I am extremely nervous.” She smiled at me, explained that the appointment would mostly be a lot of talking. “She might want to do a manual exam,” she advised, handing me a paper sheet. Great, a semi-naked convo about my last two years of tragedy.

I’ll be clear: this appointment was my last ditch effort. I realize the odds of having a healthy baby at this point are scant, and was not pinning all my hopes on the outcome. I am also a disabled Medicare patient and cannot afford aggressive treatments. I didn’t want a lot of testing, I’m fairly confident that I am a DOR  (diminished ovarian reserve) patient with shitty remaining eggs, and I can’t afford to deal with that with donor eggs or IVF with PGS testing. I have a single year left to conceive a healthy baby and I am hopeful yet realistic–all I want is to try oral medications to improve my chances of catching a golden egg.

The make-it-or-break-it point with this reproductive endocrinologist–revealing I am on multiple medications to control a psychotic disorder (my official diagnosis is “schizoaffective, bipolar type”). Start spitting out a word that starts with “schizo” abd even trained medical professionals’ eyes will fly open in alarm. This doctor did not flinch. She said she was unfamiliar with the diagnosis, so I explained what it meant and she took it at face value, even deferring a bit to my greater familiarity with my illness. She asked compassionate, thoughtful questions on how I was managing my symptoms and if I had a plan in place to take medication that would be safe during pregnancy. I didn’t feel like I was being judged, or that she was uncomfortable treating me (I once had a dermatologist refuse to prescribe me ointment for poison ivy because he was not comfortable with my psych meds). I felt really safe discussing this with her.

“Well,” she said, “I think your plan is perfectly reasonable.”

She agreed that CD3 bloodwork, AMH and AFC would likely reveal DOR. “With your history, I would probably end up recommending donor egg IVF, but I see you’re not interested in that.”

I can’t afford it, financially or emotionally, I told her. She didn’t make me feel shitty about being poor. 

“The oral medications we use are Clomid and Femara,” she said, “Did you have a preference?”

I explained I’d like to start with Femara, because of less side effects for a shorter duration. I’m terrified of mood changes–I am severely bipolar. We talked about this and she called in a script for me. 

I got exactly what I had wanted, plus compassion to boot. Doctors have in the past been terrified to medicate me. I’ve been dicked around a lot since my ttc (trying to conceive) journey started in 2013. It was finally time for me to catch a small break.

Now, where are those jeans I ordered from Free People?