A short, but very strange trip...

First a warning: this is one of THOSE posts. No pictures. No cute kids. Very long. Regular posts will return soon. I have wanted to post this for awhile, but I was waiting for things to settle down. It's taken awhile. I also wanted to get permission from my sister given the nature of this post. So with that, here we go:

Sometimes when I don't post for awhile it's because we are really busy and there isn't time. Sometimes it's because there isn't much going on. But sometimes it's because I need to be able to process what is going on before I can put it in writing. This happened last summer and I still haven't fully processed it, but maybe this will help. Back in July I had the opportunity to go to Atlanta for a couple days without the boys. I will be forever grateful that I made the trip but it was very strange from its conception until the end.

The very start of the story is that my mother was invited to a wedding in Ohio. The wedding was Memorial Day weekend and she decided to attend. She knew her neighbor has a grown daughter who lives in the same area so she offered to give the neighbor a ride so she could visit with her daughter. Because the neighbor would want to spend more time in Ohio than my mom did, my mom decided to take a couple days and drive up to Buffalo, NY to see some of our relatives who still live there. She visited my father's sister and brother. During that visit, my aunt stated that she'd love to visit everyone in Atlanta (my siblings and parents all live there) but that because she has severe anxiety she could not face flying or driving on her own. My mother offered to drive her down some time.

Now, I want to focus on that for a minute because that is huge: my mother would have to drive up to Buffalo (about 16 hours), pick up her ex-husband's sister, then turn around and drive back. And then reverse the process. It's a simplification, but I think it hits the point: this was a huge offer. When asked later how she even thought to make the offer, she said it just popped into her head and she said it and she felt like maybe there was a higher power at work here. I also don't think she thought that my aunt would take her up on the offer - certainly not soon. But a week or so later, my aunt contacted her to ask when they could make the trip. My mom teaches so the only time to make the trip is during the summer. My sister just happened to be having her daughters baptized into the Methodist church a few weeks later so my mom suggested that, all other things being equal, that might be a good time.

When I heard about the plan, I was sorry that the boys and I had visited Atlanta earlier in the year. Who knows when we'll make it to Buffalo so who knows when we will get to see my aunt. But no part of this was even a thought back in April. It was too expensive to make another trip - particularly last minute for 3 or 4 people and especially with our trip to Ireland coming up. So I resigned myself to missing the weekend. But my mom and Chris conspired and got me tickets to go to myself. I had never even imagined that scenario. I was taking the redeye on July 11th and getting home around 4 on the 15th. A short trip, to be sure, but it meant that we didn't have to worry about finding child care since the boys already have daycare on Friday and Monday.

So it was all set and I was pretty excited. About a week before I found out that my other sister (not the one whose daughters were being baptized) had been taken to the ER for severe abdominal pain. I have a good relationship with both of my sisters, but we don't talk often. We all work and have small kids and I live far away. Most of our information about what's happening in each other's lives comes from my mom. But since I have had a fair amount of experience with doctors, hospitals, and "female trouble" my sister called me wen she found out she had an ovarian cyst but she was getting conflicting information from doctors. We talked several times that week and it became clear to everyone that she was going to need to have surgery to have the cyst removed. The surgery was scheduled for Saturday morning.

I took the redeye out of San Francisco. As it turned out, they were just about to clear the wreckage of a plane crash that happened there the weekend before. We took off from the runway next to the wreckage which was a little surreal. The flight was uneventful and I got to see everyone the next morning. I was staying in my brother's old room, which still had his snake and his bearded dragon in it. Luckily that kind of thing doesn't bother me. My mom had a full house with me, my aunt, and my sister's two year old (since the surgery was in the morning). As a side note: it was only a full house compared to recently. I'm one of five kids so the house was pretty full for a long time, but now we are all out of the house. My sister's surgery was being done by an oncologist because the cyst had behaved strangely but he did not think that there was any chance she actually had cancer. He just had a lot of experience with this type of surgery. But he was wrong. During the surgery he found that in fact that my sister, at 33, had ovarian cancer. It was the earliest stage he'd ever seen ovarian cancer - which is almost always caught late because it has no symptoms and no screening. The surgery was more involved than original planned, though he left everything except for the affected ovary.

I can not really explain how this news affected everyone. My mother lost her mother to ovarian cancer and so this brought up a lot of issues for her. Her mother had been in her fifties and THAT is considered young for the disease. Thirty three is almost unheard of. At the hospital they were asking if my sister was of Ashkenazi Jewish descent (she happens to have a Jewish sounding last name, but she got that from her husband). But there was no such heritage that we knew of (subsequent conversations indicate there actually might be, but we had no reason to believe so at the time). I was thinking back to less than a year ago when I had my hysterectomy. One of the big questions is whether or not to keep the ovaries. I kept them because of the health effects of going into menopause so young but suddenly that decision was questionable at best. And of course, everyone was worried about what would happen with my sister.

The original purpose of the weekend had been my other sister's joining of the Methodist Church and the baptism of her children. We all grew up Catholic but I am the only one still practicing. But I'm glad they found a church and ceremony and service were lovely. We had a nice lunch afterward back at their house.

On Monday, I spent most of the day at the hospital with my sister and I couldn't help but remember what my mom had said: she felt like there was a higher power at work when this whole trip was set into motion. The odds that I would be there in Atlanta when such a life-altering discovery was made are incredibly slim. But I'm so so glad that I was there. I was glad I was there for each of my sisters and that I was there for my mom. I was glad for the opportunities to visit with my brothers and my aunt and with my sisters' kids. When I left, I wished that I had done more on Sunday - left some frozen meals or something - instead of just sitting around but ultimately we were all in shock.

It shouldn't have been a surprise when as we were preparing to land in San Francisco, the pilot came on and said that there was trouble with our landing gear and that we would have to go around again. We headed straight up and circled before heading back to the airport. Before landing, we were told that probably everything would be fine but that all of the emergency crews would be waiting on the ground for us to make sure and that we should brace just in case. I had a little momentary breakdown - I started laughing and couldn't stop. The literal meaning of hysterical. The landing was fine and we were surrounded by emergency vehicles and the fire marshall cleared us to go to the gate. And we still had an on time arrival.

When I got home, I sent a panicked email to my doctor, who was wonderful. Subsequent testing confirmed that my sister has a BRCA 1 mutation, which means that my other sister and I have a 50/50 chance of having the same mutation. I remember back when I worked at the Tech Museum there was an exhibit about genetic testing. I just didn't really think at the time that it would have such personal relevance to me. My mother almost certainly has the mutation (theoretically, it could have come from my father but my mother's family history is the one that caused concern). My brothers are both adopted so there aren't implications for them. But my uncles and cousins are potentially affected. Of course, depending on our test results, our kids are also potentially affected.

Although the genetic test itself is just a blood draw, the whole process can be pretty involved. I have Kaiser and they require a doctor's referral, a class, and an appointment with a genetic counselor and a psychologist before they will do the test. There is another meeting with the genetic counselor and the psychologist when you get the results. Not everyone has the same test protocol and, in fact, one of relatives got the results over the phone. Nearly everyone gives them in person because of the magnitude of the results. The test can have insurance implications - by law, health insurance providers can not discriminate due to genetic test results, but life insurance and disability insurance can. It also has psychological implications, regardless of if the results are positive or negative. The testing itself can affect family dynamics. So they want to make sure it's not taken lightly. Part of the reason this post was held so long was because I wanted to get my life insurance in order and get my first appointment scheduled before I posted it publicly. In the meantime, other members of my family have been tested. So far, everyone who has been tested has been positive for the mutation. Talk about intimidating. I have to remind myself that it doesn't change my odds even a little. I either got that gene from my mom or from my dad. Presumably only one has the mutation (and based on the family history we believe that is true).

By now, my sister has finished her chemo and her doctors are feeling good about the results. She did amazingly well and even managed to work during most of it. She will obviously have aggressive monitoring in case the cancer comes back. She has started a blog which she has given me permission to post here: http://melissasmiscellanea.weebly.com

So, anyway, any prayers and positive energy are appreciated. For my sister and for everyone who loves her. In some ways it's over and in some ways it never will be. Thank you.