Most people don’t do things. They just tread water and wait for things to happen to them.

Jen Dziura, Bullish

30 is the Magic Number

Growing up, I thought that people had their lives together by the time they turned 25. You had graduated from college by then and started your career, and of course you were making good money with no debt and no problems.

And then I turned 24 in 2008, I was laid off from my job. Pete and I got married, but he was transitioning careers too, so it was a tough time for us. We had no insurance for 9 months, which was a huge deal because of the kidney thing. We were working so hard, and so were my college friends, who were all juggling kids, grad school, careers, and their own recession issues. I don’t know if it was just me, or the supposed “sense of entitlement” that my millenial generation supposedly suffers from.

I specifically remember having a conversation with Brent where I said, “I thought things would be better by the time we were 25, but now we’re 25 and they’re not. So I think that 30 must be when everything falls in to place.”

And with that, 30 became the magic number. And any time I would get frustrated with what was going on, I would remind myself that life had to be better at 30.

At 28, Pete graduated from grad school but couldn’t find a job. We went through another kidney biopsy and discovered his kidney disease was genetic, but they didn’t know what gene it was. While talking about if we should even have kids, I got pregnant and subsequently miscarried. I think both of us were done at the end of 2011. Something had to give. And then 9 days before my 29th birthday, I accepted my job in Cincinnati, at a company that was way more stable than where I was working before. They would relocate us, and we would leave Orlando behind two weeks later.

2012 progressed quite nicely. We found an amazing house and had extra space for the first time since Pete moved into my condo. He was able to transfer with Target, which allowed him to maintain his work history with them while simultaneously looking for a job.  Things were looking a little brighter. The economy in Ohio is a little more stable. He got a contract job as a recruiter, and with 37 days left before I turn 30, he was offered a full time, permanent position with them. We can breathe a little easier.

The next morning I got to call Brent and say, “Pete got the job! I TOLD YOU things would be better by 30!”

So while my friends work on their “30 things to do by 30″ lists, I’m happy with my one thing: confirm that 30 is the magic number when things will finally begin to fall into place.

The Dates of Bad Days

I’ve always thought remembering dates of bad days and having them loom over your head was stupid. Every single day after the first bad one is a reminder. You never go back to the way things were before. I didn’t think the date coming back around would affect me at all–but I was wrong. It’s like my body remembers and my mind is experiencing it all over again…I know the physical part has been finished for a long time, but the emotional part is still making its way through my heart and putting tangles in my mind that I can’t figure out how to undo.  –Angela Adams

The anniversary of my D&C was last week. I’m moving forward. Work is good, Pete and I are good–we like Cincinnati and our life here so far. Not so sure about winter yet, but I’ll know more about that in another month.

But the anniversaries! The anniversaries knock me on my ass. This past week has been particularly difficult. At night, I dream of being pregnant and going into labor but not having a baby come out. I wake up panicking and remember it’s ok because I’m not pregnant and it’s not really happening. During the day, I go about my business but my heart hurts. I think about how much things have changed in the past year. I thought leaving Orlando would help us start over. Instead it reminds me that we wouldn’t be here we had had our baby.

And then there’s the healing. To me, healing is tidy–a wound eventually closes and is “fixed.” The aftermath of miscarriage is not tidy. It’s messy, complicated, painful and unfixable. Not to mention somewhat isolating, since talking about it makes people uncomfortable. But does that even matter? Because there aren’t any words that can really describe what it feels like to have lost a baby.

The Aftermath

“There is, I am convinced, no picture that conveys in all its dreadfulness, a vision of sorrow, despairing, remediless, supreme.  If I could paint such a picture, the canvas would show only a woman looking down at her empty arms.” Emily Bronte

Today is the day that our baby should have been born.

I am the only one who remembers.

When you miscarry, people don’t tell you that your heart will continue to bleed, even though it was a 8 week old unborn child. It does. They don’t tell you that you will see babies close to the age that yours would have been and it will make you nauseous. It will. That every conversation including a “when you have kids” statement is painful. Because there is no when. There should be a child here already.

Miscarriage is a strange thing–people don’t want to talk about it, and if they do, what they do say is sometimes unintentionally insensitive.

So here are some responses to things people have actually said to me over the past nine months:

• “You’re young, you can have another child.”

I wanted this child. The possibility of having another one doesn’t replace the one that I lost.

• “This was God’s will.”

Believing that doesn’t mean that I didn’t lay there in bed, begging him to make this baby not leave my body when the told me that I might miscarry. And then consequently begging him to make the mass that appeared in my uterus after the baby died not be cancer, and for it to go away ASAP.

• “It’s for the best since the baby wasn’t planned.”

That means nothing. We were making plans as soon as we found out. Many children are unplanned, and the world would not be the same without them.

• “Did you know that a D&C is actually an abortion?”

I know it’s the same procedure, but I did NOT choose this. I carried my dead baby for two weeks before it became necessary to do a D&C.

• “At least you know you can get pregnant now.”

And now I also know how horrible it is to have morning sickness and feel pregnant for a month post D&C even though was no baby anymore.

• “It’s just like having bad menstrual cramps, right? So at least it’s not that bad.”

No. I had a D&C, and then had contractions for three days because they didn’t get everything out. And passed the rest of the pregnancy at home without pain medication because I didn’t know what was happening. I wouldn’t wish that on anyone. It hurt more than anything that has every happened to me.

• ”At least now you won’t be pregnant if you get that new job.”

I did end up getting the new job. But I would have rather had the baby.

The pain that has come along with the miscarriage has been so great that it’s hard to put into words. It’s the kind of grief that can make you feel like you are going to throw up, and your heart actually hurts. I don’t think that’s uncommon. It makes some people want to get pregnant again quickly, but it’s made me want to try getting pregnant less. I just want the baby who was taken from me so quickly. The one who should have been born today.

Two Months In

It’s been two months since we moved to Cincinnati and things have finally calmed down enough that my brain is registering this is a permanent thing.

It’s not because the move was easy–they told me there was no way we could relocate in two weeks. Watch us! We flew up, found a temp place, coordinated with movers and storage and rental cars. We got into our temp apartment on a Thursday and I started on a Monday, and the whole thing didn’t feel real.

We’re getting ready to move again, to a house in a walkable neighborhood and I’m so excited. For the first time since Pete and I got married, we’ll have a place to put our stuff. And a garage. And a basement. And a guest room.

But I miss Orlando. Obviously you miss your friends, but when you live somewhere for so long, you get used to conveniences that you don’t have in a new place. Like being able to get last minute doctor appointments, or going to a salon and knowing that you’re going to get a good hair cut.

Ohio is a strange place. Sometimes I look around and think, “How did we get here again?” Everyone in Ohio that finds out we moved from Florida says we were crazy. They all go to Florida on vacation. Miami, Siesta Key, Naples. A lot of them own Florida houses.

Cincinnati has a phenomenon called “sun delay” or “sun glare.” It’s when the sun is SO BRIGHT that all traffic on I-75 slows down and creates a traffic jam. It’s true! I hear about it on the news every morning.

It’s very neighborhood-centric. Finding a house was difficult. People are proud of the neighborhood they live in and don’t think you should live anywhere else. I-75 divides the city–either you live on the east side or the west side. No one recommends that you live on the west side, even though the houses are bigger and the neighborhoods seem well-kept. And EVERY neighborhood is both good and bad, unless it’s Hyde Park, which is the only neighborhood in the city that seems to have no crime at all and is SO expensive. The rest of the city is “safe” on a block by block basis. People who actually do live in the dangerous areas consider themselves urban pioneers and say things like, “We get broken into a few times a year, but it’s not a big deal.” What?! We started ignoring what people were recommending and are ending up in what is considered one of the worst neighborhoods in the city, except it’s not, according to the crime reports I’ve seen.

We are having some fun though, and went to a Civil War reenactment and EnterTRAINment (25k sq feet of model trains!). We’re doing a lot of random stuff to keep at least one day of the weekend busy. And now that we’ve found a house to live in beginning in July, I’m a lot less stressed out. I just can’t wait to get in it and for people to come visit! I need some confirmation that we’re not stuck in the Twilight Zone up here in middle America.

Further Down the Rabbit Hole

The rudeness of our first OB prompted me to get a second opinion. I couldn’t deal with her and her miracles. I needed someone to tell me the truth or at least act like they cared. I called into work and made an appointment with a different practice where one of their female doctors was on the Best Doctors list. She wasn’t available, but I got a last-minute appointment with a male OB-GYN. I’d never seen a guy for “those” appointments, but I didn’t care.

He easily spent 40 minutes with me. He performed the ultrasound, not a tech. He confirmed that our baby wasn’t developing correctly. He made sure that I understood everything he was saying. He was horrified at the way the first doctor had treated me. When Pete arrived at the end of my appointment because he couldn’t get off work, the new doctor explained everything to him again too. I was told to wait two weeks to miscarry naturally, and then we would go from there. When I wasn’t at work I was in bed, willing my body to let go of this baby and begging God to make it happen soon. Pete inadvertently made Nanny’s corn chowder, the ultimate comfort food. It was one of the only things he could get me to eat.

Torture is when your body thinks its pregnant but your mind knows you’re not. You’re still exhausted. You still throw up in the bathroom at work when the woman with the overbearing perfume walks by. But you’re grieving and carrying double secrets–you were pregnant, but now you’re not. How do you even bring that up?

Friend: “So how have you been?”

Me: “Not good, I’m having a miscarriage.”

Friend: “What? I didn’t even know you were pregnant! Why didn’t you tell me?”

I had a couple of those conversations. They’re awkward. No one knows what to say.

Meanwhile, family members and friends are announcing pregnancies left and right. You don’t want to shit on their parade.

I waited every day for two weeks to lose the baby and it never happened. So we went back to the doctor and he did another ultrasound. This time, there was no almost-baby in my uterus. I had a blighted ovum, something no one hears about until they have one. The baby (embryo) gets reabsorbed into your uterus but leaves the embryo sack attached to your uterine wall. I was sent back home to wait another week to miscarry what was left of the pregnancy.

To say that I was angry about our situation is an understatement. I couldn’t hold back on how I felt. I had to miss a meeting at work when I had my second appointment with the new doctor. I came back the next day to a snotty email from someone in the meeting that said it wasn’t “acceptable for me to just not show up” for that meeting. My manager was in the meeting. She knew where I was, which is what mattered. It was all I could do to not type back, “Sorry to inconvenience you! I’ve been busy finding out that I’m miscarrying.”

“How are you?” was a loaded question. Trivial work tasks didn’t matter–don’t you people know that I’m miscarrying?? That my heart is bleeding?? Because I couldn’t trust myself to speak in public, Peter had the privilege of listening to me say things like:

  • “I am carrying around a dead baby. How is that even possible? I didn’t even know it could happen! How is our baby dead inside of me??”
  • “I’m having a miscarriage! Right here, in front of everyone!”
  • “How the eff am I getting a baby bump when there is no baby in there? Are we being punished? WHY ARE WE BEING PUNISHED?!”

He was a saint. He held me when I cried, gave me the perfect amount of space, and listened to all of my ranting without judgment.

The days dragged on. At 11 weeks and no miscarriage, we discovered that the (very small) baby bump was there because a mass had developed in my uterus, causing my uterus to keep growing. This is known as a molar pregnancy. Our doctor was dumbfounded.

“We were all here at the last ultrasound, right? We all saw that there was nothing there. I’ve never seen this happen before,” he told Pete and I.

He pulled my charts and sure enough, my uterus was empty at the last appointment, just like we all thought.

Molar pregnancies are complicated. They’re usually just tissue with parts of a baby in it, and have to be removed by a D&C. But they can also lead to cancer. Because there were so many veins connected to my “mole” I needed to have it removed immediately. I had a high chance of hemorrhaging during the procedure–was I okay with getting a blood transfusion? If it came back cancerous, I would have to start chemo.  If my pregnancy hormones didn’t lower in an appropriate amount of time once it was removed, I would need to have blood tests every week for six months and start a low-dose chemo if the levels weren’t reducing fast enough.

The D&C was scheduled for the next day (a Friday) because the mass had grown so quickly.

There wasn’t enough time to be scared. I was drained and I just wanted to be done with it. My parents wanted to come up, but I wouldn’t let them. It was out patient, and I was sure that I would be back to work on Monday. We had already scheduled to redo our floors (in preparation for the almost-baby, of course) that weekend weeks before we knew this was happening so there was no where for them to sleep. Pete would be there so it should be fine.

The procedure went great, and there wasn’t as much bleeding as our doctor expected. But no one tells you the pain from a D&C doesn’t start until a few days after the procedure. I was told it was like “period cramps but a little worse.” I spent a week out of work, curled up in a ball on the couch. I couldn’t walk or sit up. When I called the doctor see what level of pain equals “severe,” I found out that the “mole” hadn’t been cancerous and I was probably having contractions. It wasn’t normal but it happened sometimes if there was more tissue in my uterus than they expected. He promptly called in a pain killer that made the rest of that week a lot more tolerable. A week after my procedure, alone in our house, I passed the rest of our pregnancy on the toilet.

It took 11 weeks, but at least there was finally closure.

 

Down the Rabbit Hole

It began with the hot flashes.

It was September, after all, and the building that I work has an air conditioner that is notorious for breaking. I kept telling my friends at work that it must be “The Change.” Which doesn’t happen at the ripe old age of 28, so it seemed like a good joke.

At home, I would collect the clothes from our bedroom and carry them to the laundry room. 100 feet, max. By the time I was back inside I was sweating profusely. I will be honest and say that I sweat more than the average girl. I blame it on long summers spent in the Miami sun at the Royal Palm Tennis Club’s camp. My body knows how to cool itself down quickly. But just vacuuming the floor made me sweat more than I did after an entire day of tennis, and I ended up giving up and just laying on the bed during the weekends with the fan on high to keep cool.

And then, on the day that I was going to meet Lyanna, Aunt Eva, and my Newfoundland relatives in Jacksonville, I threw a can of cat food in our garbage and discovered Pete had forgotten to put a liner in there. No big deal. Except that I reached down to pick it up and gagged from the smell. I told Pete that he had to take care of it and clean the garbage can, obviously something else was in there.

“Maybe you’re pregnant,” he joked. Both of us knew it wasn’t possible. I didn’t get an IUD for no reason–they’re supposed to be 99.9% effective. Inside I started to panic–between the aversion to smells and the sweating something was obviously going on.

During my drive to Jacksonville, I decided to stop and take a pregnancy test so that I would stop worrying. And there, in the bathroom of a Walmart, I found out I was pregnant.

I sat through lunch with my long-lost cousins and whispered to Lyanna that I had a huge bomb to drop on her later. As soon as lunch was over and we were walking to her car, I told her.

“We’re going to Target to take another one right now to be sure,” she said. And there, in Target we took the second test, and again, it was positive.

I swore her to secrecy. IUDs come with a risk of ectopic pregnancies, so I wanted to be sure that it was a baby before we got too excited. And tell Pete, of course. That night when I got home I videoed his reaction to me handing him the pregnancy test. We took a third one to be sure. Positive, again. It would make a great story for the kid, that its mom found in out the bathroom of a Walmart and confirmed it in the bathroom of a Target–super classy. I made the first OB appointment and we saw the beginnings of our little baby floating around, and I thought that this baby was meant to be since it defied the odds and was conceived. I was six weeks pregnant, after all!

Of course we weren’t ready. We live in a tiny place with only two bedrooms,  and Pete had just graduated from his grad school program. We had even been talking about not having kids because of Pete’s kidney disease, and were scheduled to see a genetic counselor to see what the odds were of the child having it. But it was ok–we would make it work. When our second appointment rolled around we were starting to get excited. We had told our parents and sworn them to secrecy as well–we wanted to pass the first trimester mark to be safe.

At the next appointment I couldn’t wait to hear the heartbeat. I remember laying there on the table and the nurse saying that the doctor had to talk to us. We could see the ultrasound and something wasn’t right. The baby didn’t look like it should. When we got to the doctor’s office, she said she couldn’t see a heartbeat, but they might be off on their dates, and “maybe a miracle would happen” and we wouldn’t miscarry. What? The baby might be dead?

The doctor handed Pete back all the medical paper work we had just filled out and told us to bring it back the next time we were pregnant.

And that was how our journey through pregnancy loss began.

Good Riddance, 2011

someecards.com - Let's never speak of 2011 again

This is how I feel about 2011.

In the past twelve months, we have survived two layoffs at work, a kidney biopsy, and both of us working 2 jobs (or in Pete’s case, working 2 jobs and going to school). We got a diagnosis for Pete that said future children will have over a 50% chance of having fibronectin glomerulopathy. We are seeing a genetic counselor and deciding if we’ll have kids (the answer to that is probably, but it’s good to know what we’re up against).

It’s been a rough year, and I’m tired.

So no resolutions for me, this year. Instead, I just hope that we’ll have a little less drama, less medical issues, and a better job for DP. And that would make for a successful 2012.

Every phrase and every sentence is an end and a beginning, every poem an epitaph.

As a Lit major, I love poetry. If you had told me that the hours I spent analyzing it and writing papers would make me actually memorize passages I would have told you I’m not that hardcore.

And yet.

It comes to me at unexpected moments. When I wrote the post about the latest in our CKD Adventure, T.S. Eliot kept popping into my head.

And indeed there will be time
For the yellow smoke that slides along the street,
Rubbing its back upon the window-panes;
There will be time, there will be time
To prepare a face to meet the faces that you meet;
There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;                            
Time for you and time for me,
And time yet for a hundred indecisions
And for a hundred visions and revisions
Before the taking of a toast and tea.
- The Love Song of J. Alfred Prufrock, T.S. Eliot

Eliot transcends my thoughts so that I know that we have plenty of time. And things will change, and change again, and there will still be time.

As I was driving home last night I got parts of Eliot’s Little Gidding.

We die with the dying:
See, they depart, and we go with them.
We are born with the dead:
See, they return, and bring us with them.

Today is a day of hushed conversations behind closed doors. Of waiting for the phone to ring and hoping that it doesn’t. People’s lives will change today.

What we call the beginning is often the end
And to make and end is to make a beginning.
The end is where we start from. And every phrase
And sentence that is right (where every word is at home,
Taking its place to support the others,
The word neither diffident nor ostentatious,
An easy commerce of the old and the new,
The common word exact without vulgarity,
The formal word precise but not pedantic,
The complete consort dancing together)
Every phrase and every sentence is an end and a beginning,
Every poem an epitaph. And any action
Is a step to the block, to the fire, down the sea’s throat
Or to an illegible stone: and that is where we start.
We die with the dying:
See, they depart, and we go with them.
We are born with the dead:
See, they return, and bring us with them.
The moment of the rose and the moment of the yew-tree
Are of equal duration. A people without history
Is not redeemed from time, for history is a pattern
Of timeless moments. So, while the light fails
On a winter’s afternoon, in a secluded chapel
History is now and England.

We are sitting in the waiting room at Mayo Clinic and Pete is reading Cat Fancy.

It’s Biopsy Day #2. Biopsy Day #1 was a waste of time and money. The doctor at Florida Hospital did not take enough of a tissue sample and sent it to what I’m now calling a nephropathology farm, so while he said the results he got from Biopsy #1 were enough to determine if the Prograf was toxic to Pete’s kidneys, it wasn’t. According to our Mayo doctor, Dr. A, the results weren’t even enough to make a diagnosis about the state of Pete’s kidneys.

Music plays. Mayo has a Humanities in Medicine program and we’re being serenaded by two volunteers with violins.

I turn to Pete and ask, “Are you nervous?”

“No,” he says. “We’ve done this before. It’s not that big of a deal.”

“I hate to ask you, but I can’t remember right now. If something happens, if they can’t wake you up, do you want to stay on life support? We really need to do our living wills.”

“After something like this? Yeah. It doesn’t matter though, everything is going to be fine. ”

Love takes on many different forms. In our case, Pete expresses love by getting a biopsy he doesn’t really want because I asked him to. Because I called the National Institute of Health (NIH) to try and get him on a clinical trial and they wanted a conclusive biopsy. Before this, we had been mulling over the biopsy idea. His treatment may not change. His diagnosis may not change. But now it’s not completely about him–the NIH can use him to hopefully find a genetic marker for what Pete has. And selfishly I want to know what we’re dealing with.

Aunt Eva calls and she’s standing outside the main entrance. I leave Pete and the violinists and meet her. I am learning to ask for help. In the weeks leading up to the biopsy I became increasingly anxious, until I realized that I couldn’t sit in the waiting room alone while they did the procedure. At Florida Hospital, it took them two and a half hours after the procedure was over for them to come get me–they forgot I was there, and then couldn’t find Pete. Watching them take him away to a place I couldn’t go, and then not being able to find him wasn’t something I could go through again alone.

“We need at least 15 glomuleri,” I tell the nurse. “Will you make sure the doctor knows?”

She looks at me, surprised. “Fifteen? Where did you hear that from?”

I’m learning how to be an advocate.

I explain what happened that last time: there weren’t enough glomuleri to make a diagnosis. That All Children’s Hospital in St. Pete shouldn’t have even made a diagnosis when Pete’s first-ever biopsy was done when he was 19. And that was supposed to be a good hospital.

Soon we have 5 nurses in Pete’s curtained area.

“Tell them about the glomureri,” the our original nurse tells me.

I explain again. The doctor walks in and Aunt Eva whispers to me, “The glomureri! Tell him!” She’s advocating my advocacy.

Pete is giving me a look from the hospital bed. His look says, Stop harassing these people.

The doctor asks me if I’m “the bride” and if I have any questions. I can’t help myself.

“Dr. A says we need at least 15 glomureli!!” I blurt out. Aunt Eva laughs, and Pete rolls his eyes.

The biopsy takes 30 minutes and is over before Aunt Eva and I get back from lunch. Pete’s awake, alert, and not in any pain. He just has to lay on his back for 24 hours to prevent internal bleeding.

I kiss Pete on the forehead and ask the nurse if they got enough tissue.

“We did,” she replies. “Four specimens.”

Dr. H, standing in for our regular doctor, walks in to check on Pete. He squeezes Pete’s foot while asking if he’s in pain. It’s a comforting gesture, and it’s all I can do not to hug him.

One week and another Mayo visit later, Dr. A tells us that we have a diagnosis. Fibronectin glomerulopathy.

Neither of us can  say the last word correctly.

We find out that it’s autoimmune, and that’s why his medications don’t improve kidney function. Our job is to keep Pete’s kidneys functioning as long as possible. A transplant will happen eventually, but we knew that. But now we know that it’s possible he will need another transplant after that. It’s pretty rare, and according to Dr. A, only 23 people were in the last study since that’s all they could find.

“You could have picked something easier,” Dr. A jokes, and we laugh. He grows serious. “Fibronectin glomerulopathy is autosomal dominant.  You should see a genetic counselor before having a baby.”

Suddenly, having a child becomes ethical.

We talk about the possibilities on the drive home. We could just be the cool aunt and uncle to our nephews and spoil them rotten. We could get a dog. Move closer to family. Travel whenever we wanted. Buy a lake house and host all of our friends and family all the time. It’s not what we wanted, but we could make it work.

Or we could take a chance and have a baby. A baby that will have a 50/50 chance of having a disease that no one knows anything about. Who, if it gets the gene, will be relatively healthy until their twenties and then faced with a transplant between 20-60, according to the research. Is that fair? I don’t know. It’s a lot to think about.