Clinic is done, scans are CLEAN!

Lighting the Menorahs at the annual family Hanukkah party on Dec. 1!

Let’s start with the most important news first: Monday I completed my first clinic as part of the NIH’s study on LFS, which included blood work, interviews, a physical exam, a brain MRI and a full body MRI. I got all of my results back last night: blood is normal, and both my brain and body scans came back clean! No follow up necessary. I do it all again in one year. WHEW.

Despite the very, very good news, clinic affected me more mentally and emotionally than I thought it would. I knew it would be a whole day at the NIH (7 a.m. to 9:30 p.m.) and I knew the whole day would be dedicated to my LFS and screening for cancer.

Every four months the study requires blood work, which they can get from my oncologist in State College since she checks my blood every four months anyway. And every year they need a breast MRI, which I can continue doing in Hershey with Dr. Kass and have the results sent to the NIH. And every three years they need a colonoscopy. YAY. I get that done in Hershey too, and my last one was in April 2012. So that will be coming up.

But the full body MRI and brain MRI will be done annually at the NIH for as long as the study requires or as long as I agree to be in the study.

Trust me, I am relieved that everything came back clean, especially since before my MRIs Dr. Mai warned me that since this would be the first time I’m getting an MRI of my brain and entire body, it is pretty common for “things” to show up (being of concern or of no concern at all), that need to be re-screened or followed up on. So I was actually prepared for them to see something they wanted to re-test. But actually when Dr. Mai called Tuesday night she said there was nothing of concern and just to re-scan in one year. SUCH good news. I mean, they looked, in detail, at my entire body and brain and found NOTHING. And this is the NIH, some of the best doctors and researchers in the world. And they were looking extra carefully because of my LFS and because of the study. And still nothing. That is huge. HUGE, HUGE, HUGE.

Repeat in one year. Off my mind for now.

But Monday really affected me. I was feeling so rundown and out of it Tuesday morning that I called off work. We had gotten back to State College at nearly 1 a.m. Tuesday, and I had to get Campbell from the pet lodge at 9 a.m. so between the traveling for nearly a week (Thanksgiving and Hanukkah in Warminster and Reston, plus being at the NIH for more than 12 hours Monday and being strapped in an MRI machine and being poked and prodded), my body told me I needed to sleep. I had finished all of my immediate assignments for work so I let myself take the day off.

And man, did I need it. As soon as I picked up Campbell and brought him home, I literally slept all day on the couch with him. I slept from 10 to around lunchtime, ate something, gave him lunch and took him for a walk, and then went back to sleep until almost 4. And then went to sleep for the night around 9:30. Thank goodness Campbell was such a good boy, and he smelled so good because he just had a bath at the pet lodge. So we slept on the couch, him by my feet all day. I did kick him in the face by accident once, but he didn’t mind. He’s such a good dog and he could tell I was exhausted.

Today I feel better. I feel relieved. I’m glad it’s over. It’s just Monday was tougher than I thought for some reason. But that’s all over now and my regular doctor’s appointments and tests will continue. Regular LFS maintenance. No more clinic to worry about until next year.

And this past weekend we were in VA for the annual family Hanukkah party, which was great. Lots of talk and excitement about us starting the adoption process, which makes me feel great. I knew all of my family and extended family would be excited for us, but it was nice to hear of everyone’s support and encouragement. I found myself “protecting” it a little saying it could take a long time, with the underlying meaning: don’t get too excited. But that was quickly met with “However long it takes, it will happen” kind of thing. Which is nice. Which is comforting.

Our families are overwhelmingly supportive and excited for us. It’s so very comforting.

So as the gloomy winter weather continues and my seasonal affective disorder kicks in I am trying to keep up with things that make me happy: running, juicing, getting excited for birthday and New Years plans. What I hate about this time of year is the darkness and the cold. What I love is the indoor lights.

I ran outside Saturday morning before we left for Reston. It was cold and I had been avoiding running outside for that very reason, and because I have a gym membership. But the gym on Saturday doesn’t open until 8 a.m. and we wanted to hit the road close to 9:30, so I knew if I wanted to get a run in, I’d have to do it outside. And it wasn’t so bad. My core was warm but my fingers and face were cold, despite wearing Under Armour gloves and an ear warmer. Running outside in the winter IS invigorating, though. It wakes you up. It alerts all your innards. It’s refreshing. So maybe I can do more of that this winter.

I know I’m supposed to be a “winter baby,” in that I was born in the winter, Dec. 22. But I am clearly a summer baby: I love the heat, the sun, sandals, swimming, the pool, the ocean, being outdoors, campfires, hiking, flowers, green grass, butterflies, bugs. I love heat. I love the summer.

But until it gets here I have to embrace the winter. The scarves and the boots and the snow and the cold and the dry skin and the darkness. The best I can do is the indoor lights; make my home bright and warm. And it is.

I always joke that I wish I could be a bear and hibernate for the winter. Never come out of my house until April. Obviously that’s not feasible and I would crumble at the boredom and lack of human connection. So instead of hiding from the winter I have to tackle it. Run outside. Trudge in the snow.

Enjoy this season because it’s a good one. I tell myself to never fast-forward through life or just wait around for the next thing. THIS is what we must be enjoying. Now is the best time.

And right NOW, where we are in life, really is the best. I’m healthy and we are preparing our home for a new child someday. And soon I’ll turn 29 and I’ll turn 29 in perfect, flawless health.

Thank you to the NIH for doing this study. For providing me with screenings free of cost. For looking at my whole body and understanding my fear, and the fear of others with LFS. For furthering your research to help people and families with LFS. To figure this thing out. To catch cancer early, and to prevent cancer one day, maybe.

Thank you to my friends and family for overwhelmingly and widely jumping on the wagon of support as we begin this next chapter of adoption in our lives.

Thank you Old Man Winter for being here. As much as I say I “hate” you, there is part of me that realizes you’re here for a reason. Because in order to get to the warmth I must brave the cold.

Because in order to get my results I must brave the scan.

Thank you to me for knowing that I don’t always have to be “strong.”  I’m almost 29 now and I’ve been through a lot of really difficult health things. And as I was lying in the MRI machine, strapped in with things all over my body and ear plugs in my ears covered by headphones, I told myself to be strong because these screenings were worth it, just like my breast MRIs, which were much more uncomfortable physically.

Toward the end of the MRIs (they did both the brain and body together), nearing the one-and-a-half-hour mark, I started to get antsy. My body hurt everywhere from not being able to move and I was instructed to hold my breath, let it go, etc. I wanted out of there.

And like I said, I knew I was 29. I knew this wasn’t my first MRI. I knew I had been through MUCH worse. I knew it was worth it. I knew I was part of an amazing study. I knew this was important. But despite all that, I let myself cry. I let myself feel like a tiny little girl who was pissed off I was stuck in a machine with waffle-shaped pieces on top of me, my head close to the ceiling. Not heavy or flowing tears, just a few small tears, enough to get out what I was feeling. And I was perfectly OK with it. And I wasn’t the least bit embarrassed when the technician pulled me out of the machine when it was over. Whether or not he could see that I was crying, I didn’t care.

It was my MRI and I could cry if I wanted to.

  

Anna, me and Julie at the Hanukkah party