Monday, January 2, 2017

A year gone by

I started writing this post over a month ago, and never got to finish it. Much has happened between then and now.

I wanted to write about how after a difficult start to the year (my father passing away, my mother moving in with us, setting up her oncology and chemo appointments, etc) that things had finally gotten easier. That we had gotten in a groove. Things were ok. Things were actually looking up, in fact.

Well, the universe has a twisted sense of humor.

This is how the last 16 months have been for me:

August 2014: my son is born, we bought a house and moved out of DC.

September 2014: My mother is diagnosed with stage 4 breast cancer, and I'm diagnosed with severe postpartum anxiety.

October 2014: Although my father's esophageal cancer looked like it had been beaten, new tumors showed up on his lungs. He starts Opdivo, as that's the only treatment option left open to him. My mother has a mastectomy.

November 2014: My father's health rapidly deteriorates, and during Thanksgiving week, he passes away. My mother begins chemo.

December 2014: My father's funeral, and my mother has a minor heart attack.

January 2015: My mother moves in with us in Maryland. We found a great oncologist, and she starts chemo treatments here.

February 2015: It has become painfully clear that my husband has relapsed in his sobriety. He goes to an in-patient rehab for a few weeks.

March 2015: Things start to get better. The anti-anxiety meds I was prescribed have helped greatly. My husband is sober again. My mother is doing well.

April-July 2015: We get back into a normal routine again. Scheduling everything (childcare, mom's appointments, etc) becomes easier as I've gotten in practice (my husband's work schedule flip-flops between mornings & evenings every week, so it can be a bit of a circus act to get everything scheduled without conflicts). Summer shows up, and we take advantage of the beaches nearby. We also decide that Liam needs a sibling, so we begin trying for another baby.

August 2015: Liam turns 1 year old. Lots of people came to his first birthday party, and it was terrific.

September 2015: Still trying.

October 2015: I find out I'm pregnant! Due in July. I feel great. My mom has a scan and it shows improvement! She's doing terrific. The oncologist is very pleased.

November 2015: Things take a major nosedive. Everyone in the house comes down with some sort of awful cold. For my husband, Liam and me, this isn't a big deal. But my mother has no immune system due to the chemo treatments. One afternoon, she calls out to me. She can't breathe very well. I can see that she is laboring to take a breath. I briefly debate taking her to the hospital myself, but then I remember that this is also how she acted when she had her heart attack. I call 911 instead, and an ambulance takes my mother to the hospital. My husband, Liam and I follow behind. We get there, and my mom is in one of the beds in the ER. She's still having a bit of trouble breathing, but she's talking and acting like her normal self. The nurse tells me they will give her a breathing treatment and some antibiotics, and hopefully that should knock whatever it is out. I tell my husband to go ahead and take Liam home. ERs take forever, and it would probably be awhile. They leave. I call my brother and give him a heads up. He tells me to update him if anything changes.

They give my mom an oxygen treatment that is supposed to help her breathe. It works okay for the first 20 minutes, but then she complains that she still can't breathe with it (it used a nasal cannula, and since she was sick, her nose was stuffed up so it wasn't helping). They switched her to a BiPap machine, which uses a face mask. She lasted for about 5 minutes before she pulled it off her head. She really didn't like the mask. The doctor came in an explained that the BiPap was really her last option before having to go on a ventilator. She needed oxygen. Her body was working too hard to breathe, and if she kept it up, she would wear her heart out. And if she went on a ventilator, there was a good chance that she wouldn't ever come off it. She agreed to try again, but after 5 minutes she started to panic. The oxygen wasn't going anywhere, and she was starting to become oxygen deprived. She was no longer coherent and wouldn't stay still. The doctor pulled me aside and asked if my mother had an advanced directive. I knew she did, but I didn't know what it said. He told me that the only option left was to put her on a ventilator. However, there was no guarantee that she would come off of it. That it was basically life support. I didn't know my mom's wishes, but I knew that if she did NOT go on the ventilator, she was going to die in front of me, and I didn't want that. I told them to go ahead.

They pulled me out of the room, and through the window I watched as as half a dozen people rushed into the room, held my mother down, drugged her and put a tube down her throat. I called my brother and told him what happened, and he said he was coming down (he lives almost 3 hours away). I felt so alone and so scared. A lovely lady, the hospital's patient services person, introduced herself and basically took care of me that night. She made sure I had a charger for my phone and kept me updated. When they moved my mom to the ICU that night, she escorted me there, and waited until my brother showed up before leaving for the night. My mom was in the ICU, hooked up to a bunch of machines, and I had horrible flashbacks to watching my dad die, and wondering if the same thing was happening again. My brother showed up and was just as devastated as I was.

We spent the next few days waiting for my mother to wake up, hoping she would wake up. The nurses that we met during this time were incredible, and I will never forget how kind they were. At first, I think they were skeptical as to whether my mom would pull through this--for folks that have never met my mother in person, it can be kind of shocking. Cancer has not been kind. She has lost a lot of weight and her hair. She looks weak. But she's not. She is literally the toughest person I've ever known.

After a few days, mom started responding well to the antibiotics and they reduced the sedatives a bit. She started waking up a bit--enough that she could gesture and write with a pen. What did she write? COFFEE. Of course. My mother is a coffee fiend. Things started to look better, so my brother went back home to get back to work. The doc recommended turning down the ventilator a bit to see how she did with breathing more on her own--she reacted well to it, so he recommended going ahead and taking the tube out. It only took 3 minutes, and I had my mom back. She was weak, but she was back. She stayed in the hospital for a few more days, and then a little more than a week after she was admitted, they discharged her. The following week she helped me prepare Thanksgiving, which we celebrated with my brother and his (pregnant) wife. Things look up again.

I mentioned I was pregnant during this, right? And just as my mom was admitted to the hospital, the morning sickness kicked in big time. I felt awful. It didn't help that I was also sick with some sort of awful cold on top of everything. I pretty much spent that entire week either at the hospital or in bed myself. I couldn't even really enjoy Thanksgiving because the nausea took away my appetite.

December 2015: The holidays. I'm super sick. The nausea is nothing like I experienced in my first pregnancy. I had no appetite, which was good because I threw up anything I ate anyway. I was prescribed diclegis (which is basically Unisom & B6). It worked like a charm the first time I was pregnant; it didn't do a damn thing this time. I pray that it eases up in the next trimester. I meet my new midwives and they do an ultrasound to check on the little squish. I see him squirming around and hear the heartbeat. Everything looks great. They print out a couple of pictures for me and I'm told to schedule an NT scan at 11 weeks (which was right around the corner) and register with the hospital for the birth. I go ahead and schedule the scan and send out the baby announcement (just to family and close friends) with our christmas cards (it was a photo of all our stockings on the fireplace, with a tiny baby sock at the end). I register online with the hospital, and they send me a nice little packet in the mail, including a little bib that says "mommy".

The day of the NT scan comes. The plan was to have my husband go to the scan with me. But my mom started having some breathing issues again, and the oncologist wanted her to see a pulmonologist and to get a chest x-ray. They both end up being scheduled the day of my scan. I get to play scheduling gymnastics again. Since I've "been there, done that" with pregnancy, and I've done the NT scan before, I figured it wasn't a big deal if my husband wasn't there. I asked him to instead take my mom to her appointments so I could go to the scan. He agrees.

I get to my appointment and take a seat in the waiting room. There a bunch of other pregnant women there. I try to remember whether it was the NT scan or the anatomy scan that my infamous "gun incident" occurred with my first pregnancy. I don't see any trigger happy security guards at this facility, so I figure I'm safe this time.  I meet with the genetic counselor. She's very nice. I remember doing this with Liam. She goes over my age, my health history, my family's history. Also my husband's. As before, there's no glaring issue except for my age. Over 35, and I'm considered geriatric (or Advanced Maternal Age). She explains that my age there is a greater chance of a chromosomal problem, but there is still MORE of a chance that I won't so not to worry. I'm not worried. My husband and I are both healthy, and I've got a healthy kid! She goes over my options for testing and I I agree to the blood test (they can test for chromosomal abnormalities and tell me the baby's sex), but decide to decline the invasive tests (CVS and/or amniocentesis). I figured there's no need to do something that could potentially cause a miscarriage without a good reason.

They call me back to the room and tell me to hop up on the table. The tech squirts the goo on me, and the ultrasound begins. Immediately I see the squish on the screen. He looks bigger now! He's moving around a bunch too---no wonder I always feel like I'm going to throw up. He's doing gymnastics. I see his little heart pumping away too. He looks like a weird alien, just like his brother. I smile to myself. Then the tech put up the wand, looked at me and said "I don't like what I'm seeing. I'm going to get the doctor".

And my world crashed around me again.

The tech left me alone on the table, the goo going cold on my exposed belly. I didn't know what to think. The baby looked fine to me. Healthy and active.

After what seemed like an eternity, the doctor came in. He took over the ultrasounds machine and began looking again. And that's when I saw it too. The NT (Nuchal Translucency) Scan measures the the fluid filled sac at the back of the baby's neck and back. It should only be a certain width. Too wide, and it could indicate a serious problem. And even I could see that sac looked too big. "I'm sorry to tell you, but it appears that your baby has a 50% chance of a chromosomal abnormality".

I don't remember too much of that day. I remember texting my husband that something was wrong. I remember meeting with the genetic counselor again, and crying. I agreed to do the CVS test (they take tissue from the placenta) which is diagnostic and would tell us for sure what was going on (the NT scan is just a screening. There was also a chance that absolutely nothing was wrong. I kept reminding myself of that). They would be able to get me initial results within 2 days, and the full results in a week or two (they have to grow the tissue to test it).

A few days later, I was back at the same facility. My husband wasn't able to take off of work, so my mother came with me. They led me back to the room, where the genetic counselor I had already spoken with was waiting, along with the doctor. They were very nice and very sympathetic. In order to do the test, they had to do another ultrasounds so they could see the placenta. Once again, I saw my son on the screen. He looked like he was waving. The doctor explained everything they were going to do, and after a painless 20 minutes, it was done. Then it was just a matter of getting blood drawn for the blood tests. The counselor gave me her cell number and told me she should have the results by Friday and that she would call me as soon as she got them.

The next few days were a blur. I was still sick as a dog with nausea. I had to take it easy because the CVS test carries a risk of miscarriage. I still went to work, but I stayed off my feet.

Friday came, and by the afternoon I still hadn't heard anything. I called the counselor's cell and she told me she would call the lab. 15 minutes later she called me back and told me there had been a delay in getting the sample to the lab, so they wouldn't have anything until the following day. She assured me they were open on Saturdays (and this would be Christmas Eve) and that she would let me know as soon as she had the results.

Christmas Eve came, and I started driving to work. I was on the Bay Bridge when she called. She asked if it was a good time (never a good sign) and I told her I was driving. She asked if I wanted to wait until I got to work to talk (NO!). I asked her to tell me whether it was good news or bad news. She confirmed it was bad news. The blood test and the CVS test both confirmed there was an extra chromosome where there shouldn't be one. I thanked her for calling me and told her I would call her when I got to work. I hung up and cried the entire ride in.

When I called her back, she just reiterated what she already told me, and that to know exactly how severe it would be would take the full results (a week or so). She also confirmed that I was carrying a boy. She also stated there was a chance of miscarriage or stillbirth.

I spent the rest of my workday trying not to fall apart. I called my husband and told him the news. He was just as devastated as I was. When I got home from work, we talked some more. I told him I wanted to end the pregnancy. I couldn't go through this. Even if this child lived to be born, I just didn't think I had what it took to take care of someone that would need so much care.

At 13 weeks and 2 days, I told my midwife that I wanted to end the pregnancy.

And that's where I am right now. Stuck in between. Still pregnant, but....not for long. No longer expecting a baby. Heartbroken.

I have no idea how to feel. I have no idea how to respond when people ask me how the pregnancy is going. I have to keep going like nothing has changed. This sucks. They said treat it like a loss, but I'm. Still. Pregnant.

I'm waiting for my follow-up with the Maternal Fetal Medicine specialist to learn the full results of the CVS. Then we'll schedule the termination.

I thought 2016 was going to be better. I was wrong.