Tuesday, October 18, 2011

bilateral salpingo-oophorectomy (BSO)

May 13, 2011 was the start of the very last period I will ever have. I almost wish I knew it then so I could have acknowledged its passing or remembered some details about it. At the time, I was disappointed to see it since Adam and I were four months into trying for a baby.

I conceived the week of May 24, Adam's birthday. It turned out that my growing daughter was made with the very last egg my body would ever produce. I'm thankful I know these dates. They feel important and when I reach the anniversary next year I know I will need to mourn and celebrate in some way.

The more I talk to doctors and learn about this condition I didn't know I had, the more remarkable it is that I am even pregnant. The cysts that were on my ovaries had taken over to the point that there was very little ovarian tissue left, as the surgery report said. My ovaries would have had to be removed at some point, probably in the next five years. Fortunately (?) they grew so quickly as a result of all the pregnancy hormones that doctors were able to detect that something was wrong before they caused me tremendous pain by bursting or twisting. It's good that I'm getting regular pregnancy ultrasounds or there wouldn't have been a reason to look at my ovaries.

I'm slowly researching the surgery and what my life will look like without ovaries after my baby is born in February. I've learned that the operation I had is called a Bilateral Salpingo-Oophorectomy. I can't even pronounce it but it means that both my ovaries and fallopian tubes were removed. Three weeks later, it still makes me cry. I haven't figured out my feelings around this yet. I know I'm mourning in some way but it's still in the back of my mind. Other than the 7" cut that runs up the middle of my belly, I don't yet have any side effects. I know that I can expect a huge shift in hormones after the baby is born. That's normal for any pregnancy, but in addition to suddenly adjusting to that, my body will no longer be able to make estrogen once the placenta is delivered. I won't know how to compare that to a normal recovery since this is my first baby so I can only prepare to feel crazy. I don't know how to expect something in theory without knowing what it's going to be like.

My focus after surgery has been on resting and trying to continue on with life, as if I'm only trying to heal from a physical wound. Only, this wasn't a regular surgery that fixed a problem. It's a surgery that will alter my life in a few months from now. Something was taken from me. I'm trying to deal with what it means to not have ovaries. This is the equivalent of a man being castrated. (It took me several minutes to be able to complete that sentence.) I have only been able to briefly scan medical websites that explain the side effects of missing such a crucial organ. It still causes me to panic and fear the worst. The most upsetting thing I've seen is something about premature death. I've always assumed I would die an old lady and not a decade too soon. I have two more weeks until my follow up appointment with the surgeon who will likely tell me what I want to know, but also fear hearing.

I'm having a harder time than I expected dealing with things. Everything is that much harder to accomplish. I feel like life is pushing me - rushing me to get back up and going before I am able. I'm trying to function, yet everything I have to do feels like a much bigger task than it is. Big things feel impossible to accomplish. Bills are still due, I'm still trying to find work, we're running out of money. Everything seems to depend on something else which is keeping me from moving forward. I can't work on my freelance editing project because I can't think straight and that's causing me guilt and anxiety. I have the motivation to find jobs to apply for, but then can't get past feeling overwhelmed at the energy I need to buck up. How can I find the words for a cover letter and pretend I believe in myself, even though deep down I know I could do the job? It's just too much to try to convince someone else that I can do it. I'm finding cheaper apartments online and dreaming about saving hundreds of dollars a month. Wouldn't it be great to reduce that financial stress and be able to stay home longer with the baby? But oh, everything we'd need to do to move stops me frozen.

I thought I would feel better after writing this, but I don't. I can only look forward to a time when I let out a big sigh of relief and am happy I've made it through.

Sunday, October 16, 2011

There had to be an easier way to learn this lesson

For the last couple of months I have been a ball of stress and worry about the "bad timing" of going to school, trying to find a job, and getting pregnant. They say there's never a perfect time, but two weeks ago I was at the peak of thinking it was the worst timing in the world and maybe we should have waited to start trying to grow our family. Maybe I didn't think it through enough. Maybe I didn't really want to be pregnant?

This has been a crazy financial time with one income that isn't quite enough and a lot of little unexpected expenses. Individually, none would have been a terrible blow but they kept coming. The cat needed teeth pulled, Adam had an emergency room visit, and promising job leads went nowhere.

I've been upset about feeling like I haven't been fully enjoying my pregnancy. This is supposed to be a magical time when things fall into place, right? We should be giddy about shopping for baby clothes, starting to plan a nursery, reading books about having a baby, looking into child care, and planning maternity leave. I shouldn't be pretending I'm not pregnant so I can just deal with the stresses of life. That's not the way I imagined it. The first 20 weeks of my pregnancy have passed without me coming close to documenting it the way I had hoped. No belly pictures, no daily diary entries. I've tried to put it on hold, only there's no way to pause. This is happening.

At my 20 week ultrasound I decided to find out the gender of my baby in hopes of feeling more connected. Up until the technician asked me if I wanted to know, I didn't know what my answer would be. The day I found out we're having a girl things really did shift. She started to be our baby and not the baby. The previous flutters of movement became stronger too. I stopped wondering if I was having gas and I knew that was a baby kick. I started to recognize the difference between her head pushing against my uterus versus a leg or arm twitch. My parents were able to come with me to the appointment and for 24 hours I was not just pregnant, I was a mama-to-be getting to know my daughter. I started to say "daughter" out loud and refer to her as "she." Maybe things weren't so bad.

The next day I was called by the midwife letting me know that large cysts were found on my ovaries. I don't remember the conversation because scary words like specialist and surgery and abnormal and cancer were being used. The following week I was suddenly meeting with a perinatologist, an oncologist, and a surgeon about the possibility of having surgery to remove the cysts because they were "so big they were crowding the baby." I didn't even know they were there until the ultrasound! I was told that the cysts had to be removed because at their current size and rate of growth, they would soon threaten the baby's development and cause an early labor - too early to be safe. Basically, it was impossible to leave them there without risking my life and the baby's life. I didn't fully understand how everything was squished together in my abdomen, but the cysts were almost as big as the baby. How could that be when I was barely starting to show? That sounded like such an exaggeration to me, but the doctor's urgency made me believe him right away.

My right ovary was up near my ribcage on my side and my left ovary was tucked down into my pelvis kind of under my uterus. It would be impossible for me to deliver without a c-section. The doctor said something about one ovary being the size of a cantaloupe. They're supposed to be about the size of a walnut! If a woman needs surgery during pregnancy, the safest time is between 20-24 weeks, and I fell right in that range. Suddenly on that Thursday, I was being told that I was scheduled for surgery on Monday 10/10/11 and I would meet with a pre-op nurse the next day. WHAT?!

At 21 weeks pregnant, I woke up from surgery to learn that the baby was fine but that I had lost my ovaries. Both. Totally gone. It turns out my ovaries weren't just covered with a few large cysts, rather there were so many cysts that my ovaries were destroyed, as the doctor said. There was no way to remove the cysts and leave me with ovaries and the only way to leave my ovaries was to leave the cysts alone, and that was not an option. They could have burst or twisted causing me terrible pain and then I'd have to have an emergency surgery to remove them anyway, so the best thing to do was remove them then. I knew that was a possibility going into the surgery and had to sign the form giving them permission. Even though we talked about that, I'm not yet OK with the fact that my family's size was decided for me. I have some mourning and adjusting to do, and obviously will have to deal with menopause at 39 years old. The placenta is providing me and the baby with the hormones we need right now, but as soon as I'm no longer pregnant I will be dealing with a whole new set of specialists, drugs, and coping techniques.

This is about how big my right ovary was. The left one was only a little smaller.

I'm so thankful I'm already pregnant and the baby is doing well, but freaked out after being left with no way to try for another if there are any more complications with this one. I'm scared that I'll have to deliver via c-section only because I now know what to expect from abdominal surgery. I'm not ready to do it again in just 4 months.

As you can imagine, I'm now beyond thankful for the timing of my pregnancy. I'm thankful that I was even able to conceive with ovaries as wrecked as they were. I think they must have struggled to squeezed out an egg just as they were dying so I would be left with a precious daughter I already love. I'm no longer turned off that my pregnancy was treated as a "medical condition" based on my age. I'm thankful for modern medicine that allowed doctors to see that there was trouble brewing. All things point to me carrying to my mid-February due date and being able to deliver without a c-section. Oh, and the cysts were benign without any precancerous cells! I have to keep reminding myself of that little bit of good news in all of this.

My view on so much has dramatically changed. Everything feels like such a huge issue and no big deal at the same time. We may still have to move, we'll be paying off medical bills for years, I still don't have a job, and I don't know how life will change. I know we'll get through it. I'll have a GIANT scar as a badge and a reminder of my strength. I have incredible friends and family, and Adam and I have started our own little family.

I'm no longer just a mother-to-be. Somewhere in these past two weeks I have become a mama and I have proved to myself that I can get through anything.