27 February 2015

Ectopic, an update

It's 9am on Friday, and I'm sitting in my living room alone. This wouldn't typically be a big deal, but it is this week. This marks the first time in four days I've been left on my own. The first time in four days there is no one looking at me like a grenade whose pin has been pulled.

It was Monday at 5pm that my favorite nurse, Joy, called. "Your numbers are not going down. The only thing liability will allow me to tell you is to go to the emergency room.  NOW."

It made no sense at all; I had absolutely no acute symptoms whatsoever. Besides, this is the ER-happy nurse who had given me the same lip service before anyone had done a single test.  No one would let me talk to an actual doctor, and further questions got me nowhere.  This seemed like panic, not prudence.  So after a lot of discussion with my husband and several other people, including an L&D nurse and her trusted OB, we decided we were okay to get a second opinion the next day.

The following afternoon, our new - and wonderful - doctor got us in immediately.  We had more blood tests and an ultrasound.  For the first time in three years, we got to talk to the actual OB.  The experience was going really well...until she returned with the official diagnosis: ironically, it was ectopic.

That's when things got serious.

You see, an ectopic pregnancy isn't about the baby.  At this point in reproductive science, we can't save an ectopic baby.  The pregnancy is gone.  Instead, priority becomes about the mom. About me. I was already bleeding internally.  Now, the fears were rupture, sepsis, death.  We didn't have time to process the loss of another baby.  "Your life is in danger right now."  In one week, this had gone from a possible joy to another loss to actual mortal danger.

As she discussed our options, I remember hearing the words surgery, anesthesia, "remove the entire tube..."  But since we'd caught it so early, my symptoms were almost non-existent, and I had pretty much no pain, methotrexate should work. We've made you an appointment at the Infusion Center. Go to the hospital now.

Methotrexate is primarily used in chemotherapy.  The sobering list of warnings and side effects was enough to make me burst into tears.  Basically, it locates and destroys any quickly-multiplying cells, killing things like non-viable pregnancies and cancer.  But it also taxes the healthy parts of your body, too.  It compromises your immune system.  It stresses your liver.  It makes you sick.  The Infusion Center is filled with very ill people receiving very serious treatments.  It's not where you go when you thought you were having a baby. In fact, it's the exact opposite: it's where you go when you're fighting not to die.

Methotrexate is toxic.  Officially, post-ectopic fallopian tubes can handle another pregnancy after 3 months.  But patients are told not to get pregnant for at least 6 months after methotrexate, because this stuff is dangerous.  It sticks around in your cells so long, it could damage a new fetus.  One of the nurses that helped us couldn't even administer the dose; she was breastfeeding, and this stuff was too toxic for her to be around.

And it was going directly into my body.

One of the reasons this was so tough for me is that I have very little experience as a medical patient.  Sure, I've been vaccinated.  I've had check ups and preventative appointments.  Recent chemical pregnancies required blood samples. But for the most part, the only thing I'd ever gotten at a doctor's office was a lollypop, a Band-Aid, maybe a prescription for cough syrup.  I'd never been in real danger.  I'd never broken a bone.  I'd never even worn a hospital band until Tuesday night. This entire experience was all very new to me, arms covered in bruises from repeated blood draws, experiencing a transvaginal ultrasound and two chemo injections in a single day.

I was so scared, I broke out in hives.

But the weirdest part is I didn't feel any different.  I'd been told my body had betrayed me, but I had very little pain, very little discomfort.  Just a lot of people looking at me with enormous concern.  It was incredibly disconcerting, like I couldn't even trust my own instincts.

Methotrexate has to be administered by two nurses simultaneously.  Doses of this unnaturally bright yellow fluid are too strong to take in a single syringe.  It requires two that go into your butt at the same time by nurses wearing a lot of protective gear.  It feels like a bad sci-fi movie.  I was so terrified, my forearms and hands had gone numb. Everyone kept reminding me to breathe.

God bless one of those nurses, though.  She'd been a patient through this before.  She knew the roller coaster we were both on, especially me.  She took several moments to grab me by the shoulders, look me directly in the eye, and tell me, "You're going to be okay. I know how much today sucks, but do not give up. This isn't the end of your story."  I started to cry; she started to cry.  She got it.  She was a Godsend.

We took Tuesday an hour at a time. Find the Infusion Center. Get checked in. Receive the shots. Walk to the car. Try a small meal. Take a pain pill. Try to sleep. Keep breathing.

As more and more hours passed, I started to realize I was lucky (and also being prayed for by approximately 900,000 people).  Truth is, I've had very little side effects.  I haven't needed the nausea medication, and I'm able to go an hour or two between pain pill doses without too much difficulty.  The scary part about that, however, is wondering if the dose was high enough.  Is it working?  Because until we know it's working, until my numbers drop significantly, my life is still in danger.  If this didn't work, best case scenario means I have to do it again next week, and that time, it'll be two compounded doses with compounded side effects.  However, it's still better than worst case scenario: a ruptured tube and being rushed into emergency surgery.

This experience has revealed the depth of love and support we have rallied around us.  My sister is a force to be reckoned with on her own.  My immediate family just appeared in the Infusion Center that night to support us.  Gifts keep showing up on the doorstep and in the mail.  People I haven't seen in years have been sending texts, emails, and Facebook messages.  One of my friends is bringing us dinner and home-baked cookies this weekend. Another friend has started an infertility related Pinterest board, searching for ways to support us.  Everyone is telling me they love me.  (Though that actually becomes disconcerting, as well.  When a couple people do it, it's sweet.  When everyone does it, it starts to feel like a goodbye.  I promise, people, I have no intention of leaving!)

I have never, in my entire life, been more grateful for my husband as I have been this week. His EMT training and rock-steady nerves have been my saving grace.  When the whole world went fuzzy, he took over.  I could not have done this without him.  It's a Catch-22, though. That first Monday night, my Michael took a back seat, and the emergency responder took over.  I haven't seen my laughing, carefree husband in four days.  Instead, he's all business.  I am his patient, and come hell or high water, nothing is going to happen on his watch.

I can also see that he's scared, and that man is never scared.  He won't admit it, but I can see it when he looks at me.  Brings me more water.  Watches my breathing patterns while I nap on the sofa. Checks my temperature in the middle of the night.  Asks about my pain level, my bowel movements, my hunger. Checks me for anemia. He also keeps reaching out for me, all the time. Sitting right next to me.  Holding my hand while we watch TV, drive to the doctor, even while he falls sleep. He doesn't let go. Sometimes, it's just to make some kind of physical contact, like his hand on my arm. It's like he's making sure I'm still here.

He's actually scared, and that's the scariest part of all.

So now, it's 10am.  I just got back from yet another blood draw. The doctor said my betas could spike before coming down, but that they need to be lower by Monday.  At a certain point, Hubs and I will have to face what this means for our future, how ridiculously high-risk we've now become.  But that's for later.  Today, we wait.  For yet another lab worker to count my betas, to see if this awful stuff is working.  To see if any acute symptoms start to appear.  To finally feel like we're out of the woods.  There are four different people on stand by, texting for status updates every hour, in case I start feeling like I need to be rushed back to the hospital.  But in the meantime, I wait. And yes, I wait alone, but I actually like that, because it's the closest thing to normalcy I've had all week.

23 February 2015

Falling through the cracks

I'm in awe of people who practice medicine for a living.  It amazes me.  And I'm definitely not one to disrespect a doctor or claim to know more than someone who has gone through specialized training.  But the system is so broken.  It has enormous cracks.  And I should know; Hubs and I fall right through one of them.  My fourth miscarriage started yesterday morning, and this post is the ugly truth about it that no one ever talks about.

I have no children, but I have been pregnant four times. I've spent a total of 16 weeks dealing with the early stages of pregnancy.  That's longer than a healthy pregnancy's entire first trimester.  But I've never had a real OB-GYN appointment.  Not ever.  I've only ever even talked to a real doctor once, and that was about 3 years ago.  Because in the world of pregnancy, OB-GYNs, their nurses, and their staff are only interested in seeing you if you have one of the following: 8 weeks of healthy pregnancy or 3 clinical miscarriages.  Note the word "clinical".

You see, our pregnancies are chemical.  Due to "chromosomal abnormalities", we only carry to about 6 weeks before we lose our baby...errr, non-viable embryo.  And apparently, these simply aren't worthy of real doctor's appointments.  Even when they happen 4 times in as many years, they don't count, and we've been made to realize that repeatedly.  I occasionally manage to reach a nurse on the phone; I chat briefly with the lab person who draws my blood every 48 hours.  But those are the only people who ever talk to me.  Everything else, we have to figure out for ourselves.  I understand why medically, but that doesn't change the fact that it's emotionally overwhelming. Every single time. We shouldn't have to do this alone.

I have to wait in the same waiting room, though.  Healthy pregnant women everywhere.  Newborns in carriers, crying and nursing.  Signs all over the walls saying, "Congratulations on your miracle!"  All the while, I sit in the chair, clinging to my husband's hand, enduring painful cramping and contractions that remind me that we were foolish to have gotten our hopes up again.  On the days you don't go to the OB-GYN's office, you're sent to the hospital lab, located directly across from the Birth Center.  Women walking around while they labor.  Newborns crying.  And you, miscarrying....again.  You fight the overwhelming thoughts that you will never have this.  THIS WILL NEVER BE YOU.

I realize this probably isn't the case with infertility specialists.  At least I hope it isn't.  And yes, we could pay the extra money to go there instead.  In fact, we will after this last loss.  But specialists can't do much for our specific problem.  The chance of success for our genetic-related issue is less than 4%, even with expensive specialist intervention.  And when specialists tell you you'd be wasting your money, you know your chances are slim.

I know what you're thinking now: faith.  Miracles, Lisa; they happen!  And it's not that I don't believe that is true.  But even when you believe in a higher power, four miscarriages puts your feet on the ground and makes you a realist.  I still believe God is in control, but simply asking God for something doesn't guarantee it.  It never has.  Yes, there is a reason God is allowing all this. Maybe I'll get to know what that reason is someday; maybe I won't.  But we have to learn to be happy no matter what happens, because we have no guarantees.  God's plan for our lives might not include children, and that doesn't make us inferior.  And people chastising or invalidating us for faith-related reasons doesn't help. At all. (And stop quoting Psalms 127:3. Seriously. Share it amongst yourselves all you want, but it is sincerely one of the most insensitive things you can say to someone struggling with infertility.)

Okay, now for the unpopular opinion. While experiencing a miscarriage gives some women unique insight to this situation - and I give them full credit and appreciation for that empathy - it changes the minute they successfully have a child.  Sorry, guys, but even you don't get it any longer.  I realize you understand how much it hurts to lose a child, but you no longer relate to the absolute crisis of self to have never succeeded.  It's a completely different ball game.  I struggle with anger when moms tell me they relate to me because of their inability to have their 2nd, 3rd, or 4th child.  Are you kidding me???  You have a little hand to hold.  You've shared that moment with your spouse.  You've met that little person that is a merging of you and your spouse.  You are acknowledged on Mother's Day.  You've been given that gift.  You're a mom.

The two lines on the pregnancy test will never mean joy to us.  Not ever again.  Instead, it's anxiety, pain, anger.  That's what miscarriages do; they steal your joy and turn it to dread.  I've learned to dig my heels in when I see those two lines.  Telling my husband comes with tears, not of joy but of fear.  It's happening again.  Don't you dare get your hopes up. Stay logical, rational. And for goodness sake, make the nurse listen to you.  Once you get her to call you back, that is.  Yes, I'm pregnant again.  Yes, you monitored my hcG last time.  No, I've never seen the doctor.  No, this is not an ectopic.  Oh, the E word.  That's the one thing they're paranoid about.  It could always be ectopic.  You'll struggle to get them to call you back at all...until they think it might be ectopic.  In a single week, I've been told "You need to go to the ER immediately" twice.  No, I don't.  You're not listening to me.  WHY WON'T ANYONE LISTEN TO ME?

I never thought I'd lose four babies.  I never thought I'd be terrified that number could climb even higher.  I never thought I'd be the person who knows a failed implantation simply by the way it feels.  I never thought I'd hate a positive pregnancy test result.  I never thought I'd resent friends who have no idea what this feels like.  I never thought I'd second guess nurses.  I never thought I'd see my tiny embryo on a piece of toilet paper, and certainly not more than once.

This is what infertility is really all about.  Aside from the loss and the lack of the thing you're fighting so hard to achieve, the system is set up to constantly remind you of your failures.  You will be made to feel unbelievably inconsequential, and you have to fight to be heard.  It's not a safe place.  It will never be a safe place.

A paranoid nurse woke me up this morning, the 4th nurse I've spoken to over the last week.  They wouldn't even call me back last week; now, they're concerned.  But now, it's too late.  Now, I just want to be left alone.  Instead, I had to talk her down from rushing to the ER.  I also talked her down from rushing to a transvaginal ultrasound.  We compromised; I will go back to the lab today, my 3rd visit in less than a week.  I'll sit with the pregnant women, grinning from ear to ear. I will have more blood drawn from an arm that's already bruised and green from all the other blood draws.  I will not see a doctor; instead, I'll make small talk with the lab person and be sent home to wait for my results.  When they finally call, it will probably be a 5th and brand new nurse.  She'll tell me they realize I was right, this is not ectopic, just another chemical.  My file will return to its usual spot at the back of the drawer.  We're sorry, but there's nothing we can do.  Have a nice day.

This week, I will stay under my heating pad, breathing through the pain as I silently miscarry my 4th baby.  I will swallow back tears and anger, my helpless husband grabbing my hand silently every once and awhile to remind me that while there's not much he can do, he's here.  I'll silently fight the overwhelming waves of failure and pain as I hide all my friends on Facebook once again, the photos of their healthy pregnancies and happy children just too much to process repeatedly.  I will once again hide while I try to put myself back together, because this topic makes people uncomfortable.  Because it's shameful.  Because again, we don't matter.  And the next time I see two lines on a pregnancy test, this entire process will start all over again.

The world needs to realize: this is what infertility is really all about.  WE MATTER.  Please listen.