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.


Linda said...

More virtual hugs. Keep fighting. Keep talking. I will be listening.

Anonymous said...

Precious Lisa, you are plucky, brave and courageous beyond boundaries and so treasured to so many people. Please keep writing and let your story, albeit not even near the end, be told as far as today - letting it go out to the ends of the earth to show that women and men are not alone in their angst and trials and that life is fragile and precious. And... I do love you, not to say goodbye, but to say I absolutely cherish you and want for you to be around for a very very long time. If only I could trade you places in this, I would.

Lydia Pierce said...

I am really speechless. I am so sorry you are going through this. I have been praying for you and Michael.