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.
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.
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.
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.
By Lindsay | September 6, 2011
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.
This is It
by James Broughton
This is It
and I am It
and You are It
and so is That
and He is It
and She is It
and It is It
and That is That
O It is Thus
and It is Them
and It is Us
and It is Now
and here It is
and here We are
so this is It.
After my old host broke WordPress, I’m back with a new host and a clean install. Woot.
Last night was a sleepless one…there was some sort of police drama going on in our neighborhood, and a helicopter was flying around until about 1:30. Then Pete got home and said hello, which woke me up. Then his alarm went off and woke me up. And then Finn was hungry (at 4:30!) and woke me up. I’m not sure how much sleep I got last night, but it wasn’t a lot and I’m tired. I need to reserve all coherent thinking for work, so I’ll tell you about Pinterest really quick.
The home decor bloggers I follow were all raving about this site where you could “pin” different images onto “bulletin boards.” It was invite only, but when I received my invite, I wasn’t in a hurry to do anything. And then I went on there and saw the quotes. And the quotes were typographic. For me, quotes + typography = love, so I was hooked. There’s lots of other cool stuff on there too for the DIY-ers and those interested in designing a cool house (which I now have boards for too), but the quotes were my gateway drug. So I’ll leave you with a few that I like.
Pinterest
Source: joyshope.com via Lindsay on Pinterest
Source: vi.sualize.us via Lindsay on Pinterest
Pinterest
Source: flickr.com via Lindsay on Pinterest
When I told people I was going home to pack up my childhood room, they wondered what I would still have there to bring back. I’m not a hoarder or anything, but I am a memory keeper. When I got home on Tuesday with two plastic containers (one with things I had picked out to keep, and another one to go through), I also had two boxes of notes and Letters from 1996-1997. I think that’s 7th grade. Peter asked me, “You’ve kept these since 1996? So even your 7th grade self thought they were important?”
On my cousin Roxane’s 21st birthday, we took her out to Pat O’Brien’s. There was lots of singing and the drinking of hurricanes. Poor Pete was stuck with buzzed versions me, my sister, and Roxy. And as I was singing along to some song, Jason called. It was around 11:30 at night, which to me says it was an emergency call. I ran outside to answer it, and we had the following conversation:
Jason (yelling over background noise): LINDSAY!
Me: Jason! What’s wrong?! Is everything ok?
Jason: I LOVE KATY!
(side note–Jason had started dating Katy not too long before this, I believe)
Me: You’re in love! Jason, that’s great!
Jason: I’M GOING TO MARRY HER!
Me: Wait–you’re going to marry her?? Isn’t this a little soon?
Jason: SHE’S THE ONE! I LOVE HER AND I’M GOING TO MARRY HER!
This statement wasn’t one to take lightly. Jason hadn’t dated many people since we met, and to call just to tell me that he would marry her made me pretty sure he would. Sure enough, they got married this weekend. 
The bonus to the wedding is that Jason and I are friends from UCF’s Tennis Club. This means that Jason had one of my favorite groups of groomsman ever. I was actually a little jealous and wished I could have been a groomswoman 
. I’ve known most of them since their freshman year and my sophomore year, and we’ve traveled all over together. The wedding this weekend made me remember how lucky I am to have had the college experience that I did. The shy, quiet girl who came to Orlando to go to UCF and was so afraid to go to the tennis courts alone the first time that she took her roommates with her the first time ended up finding herself on UCF’s tennis courts. You forget that your friends in college are the ones you really grow up with, and I’m so grateful to be able to go to Jason and Katy’s wedding, see some of my favorite people, and laugh just as hard as we did in college.
In the end, these types of friends are the ones who keep you grounded. They remind you of who you were, once, and let you know that no matter what life throws at you, you’re still that same person. Except that you’ve lost enough of your shyness by now that you’re able to dance with them ridiculously at one of your closest friend’s weddings.
So I’m pretty much obsessed with all things pit bull right now. I read pit bull blogs, I read articles, I’m hopefully contributing to Stubby Dog, and I’m looking for somewhere to volunteer. Giving up Joey was one of the hardest things I’ve ever had to do, but his awesomeness really made me fall in love with his breed.