Wednesday, March 31, 2010

Ups and Downs

Good news: I tested negative for the BRCA-1 and -2 genetic mutations, which nixes my increased risk of ovarian cancer. However, a variant did show up on the results, but it's apparently one with a database so it's being tracked in other patients as well.

Now the other news.

We met with the OB/GYN last week for our monthly check-up. She said she talked to my plastic surgeon, who's insisting on a C-section so that she can assist in the repair to the mesh. That means that I have to have the baby at another hospital than originally planned, which means adding another OB/GYN to the team. Coincidentally, turns out that that doctor is the same one I had when I was pregnant with Mylo. Unfortunately, we later found out that she's on vacation for the whole summer, and our baby is due to be extracted from my shell in August. So now we're being juggled among doctors, but I'm sure it'll work out. I'm thankful that I have a team who's the best in Canada.

Then we were presented with yet another challenge yesterday. I had just pulled into the school parking lot to drop off the kids when I got a call from the OB/GYN's office. They received the results from my serum screening (or Triple Screen, as it's called in the U.S.) and they wanted me to come in to talk about the results. My heart immediately sunk, as I knew from past pregnancies that this test was to check for risk of Down's Syndrome and neural tube defects (most commonly, spina bifida). I calmly took Chloe and Mylo into their classrooms, read a book with Chloe, and rushed off to go home. I contacted my family doctor and told her that I got the call from the OB/GYN, and she responded that she would get the results herself and get back to me. Within an hour, she asked me if I could come in and see her right away. I was struck with the same feeling I had when I got the call to come in and discuss the results of my initial biopsy two and a half years ago.

Anton tried to remain calm, but I knew what was coming. Before she went over the results, she told us that these numbers aren't conclusive, and that the next step would be to get more tests done that would give us more definite answers. Then she gave us the numbers: 1 in 5 chance of neural tube defect, 1 in 25 chance of Down's syndrome. I accepted the news. I nodded my head. I listened as she explained all the numbers and terms to us on the report. She told us about the amniocentesis, which I knew about as well. And then I lost it. She consoled me and sat with us as long as it would take. We went home, exhausted, and it was only noon.

When we got home, we Googled, talked, and cried. I just couldn't believe that this was happening. It's not so much the idea of having an "imperfect" baby that worries me; it's more of the idea that the baby might be born suffering. Neural tube defects are more than just spina bifida. Some cases leave the babies paralysed, mobility challenged, blind or deaf, or can even lead to stillborn deaths. I know--we shouldn't let our minds race before we get more conclusive results, but still, how can we reign all this in?

A couple hours afterward, we went to the OB/GYN to talk to her about the results. She told us what we already knew, and then talked about the amniocentesis and genetic counselling. There was no question--we would do it as soon as possible. Just one problem: the mesh in my abdomen. How would the needle pass through that to get the amniotic fluid? The doctor was confident that the technicians could find a pocket that would allow the needle to pass through, but the idea of someone having to stab me multiple times with that needle before getting the right spot didn't sit well with me. So when I got home, I emailed my plastic surgeon.

This morning, I got my appointment for the detailed ultrasound and the amnio--it's not until the end of next week because Anton and I are off to LA to visit his mother, who is very ill. So it'll be more than two weeks before we know the condition of the vaboose. Also, just as I suspected, the plastic surgeon wants very much to communicate with the people performing the amnio before they just go in there and try to do their thing. I'm happy that I was proactive enough to call her and inform her of the situation so that she could contribute her expertise to the procedure. It's quite difficult and stressful being someone whom medical professionals are not used to dealing with.

Another call I made this morning was to my oncologist. You might wonder why, since this seems to be entirely a prenatal issue. Well, in my desperation to find a scenario that it's actually me who has something wrong, not the baby, I looked up alpha fetoprotein (AFP--the protein that indicates risk of Down's syndrome and neural tube defects), levels and any possible relation to cancer. Sure enough, increased levels occur in men and non-pregnant women when there is presence of liver, stomach, testicular, and ovarian cancer and lymphoma. This is wacky, but I really started praying that I have cancer and that the baby is okay because that would mean I could get treatment and get better, and the baby wouldn't be born with some incurable defect from which s/he would suffer. So I left a message for my oncologist to get back to me so we could see if that's a possibility.

Also, I want to know if my cancer treatment, particular the trial chemo I had, has something to do with this. I was told many times that it's pretty possible that I'd go through early menopause cuz the chemo would fry my reproductive system. Obviously that didn't happen, but perhaps the chemo has been a contributing factor to this situation.

I woke up this morning with the same feeling I had for the first month after I was diagnosed in summer 2007. I wondered if I had been dreaming--that this shocker was some kind of fear that my subconscious was dealing with. But then I saw the copy of the report on the couch, and I knew that it was real.

I ask myself why things keep happening, why just when things seem to be going right, we get another life-changing challenge thrown at us. In my most cynical moments, I think that I'm the universe's favorite joke. In my most spiritual moments, I feel that the universe thinks I can handle it, that if there's anybody to lay these challenges on, it's me. And lucky me--I have a partner who's on the same wavelength as I am in terms of dealing with all this, and I have two kids who show me constantly that there is so much happiness and joy in life. After I told the kids that the baby might be sick, Mylo kept hugging my belly all night, "to hug the baby" as he says. This sounds so co-dependent, but I feel like I'm only as strong as the people around me, and the people around me, including my children, are the strongest. Being strong means being able to cry, and being able to tell those around you that it's okay to cry. Being strong means believing that no matter what, it WILL be okay.

Saturday, March 13, 2010


"I'm sure it's nothing. I'm sure it'll be okay." How many times have I said these words to myself and to those around me when it comes to cancer scares? I'm saying that now. I've been having a consistent pain in my leg for two months now, and my oncologist wants me to get an MRI to get it checked out. I was pretty happy and surprised that she's taking that action because they don't just hand out MRI's to anybody with a leg pain in Canada. But she wants to figure out what's going on with my leg, and this is the best and safest way to do it now, given the pregnancy. Still, I'm sure it's nothing...right?

Anton and I met with the ob-gyn again for our monthly check-up. She got the notes and recommendations from the plastic surgeon who did my TRAM-flap, but she has other ideas about how this pregnancy will progress and how to deliver the baby.
The problem is, none of my doctors have any experience at all with a woman in my situation, who is pregnant after having had a bilateral mastectomy and TRAM-flap reconstruction. So everything that they think about the situation is theoretical. The plastic surgeon believes that since I don't have abdominal muscles, I can't push out a baby and will therefore have to have a C-section, which would require cutting into my mesh. The ob-gyn would rather me have a vaginal birth and use a vacuum to suck out the vaboose, which kinda freaks me out. I know it sounds superficial, but I don't want my baby to have a cone-shaped head (I also know that it won't stay cone-shaped for long, but I can't hold off on taking pictures until the vaboose has a round head again). We meet with the ob-gyn in a couple weeks, so we'll find out more then.

We're off to a young adult cancer survivors retreat today, specifically for couples. It's good to get connected with folks who've gone through similar situations, especially because it's so easy to become isolated. Even though young people are resilient, it's quite difficult to just "get over" cancer. Thankfully, there is this space to talk about what's still there, even when the cancer is gone.