The first Post!

Alright! The much anticipated blog is finally up! As it’s me, Anita, providing the updates, you can expect them to happen no more than once a week (or two), but I will do my best to keep you informed on how my dear Annie is doing, and on our whole family's progress through this journey we have found ourselves taking. If you received an invitation to join this blog it’s for at least two of the following reasons: WE LOVE YOU!, you asked to be kept up on what’s going on, you sent us a card/e-mail or voice-mail, you have expressed a desire to help in some way, or it’s just your bad luck you are unable to shake us. We have been receiving more attention and gifts and loving thoughts and prayers and support than we have been able to respond to adequately, and we are so deeply, deeply grateful. We honestly don’t know where we’d be without you. This blog is our effort to thank you, hear from you, and let you know what’s going on.

For those of you who need a bit of background: In early June of this year, Annie underwent surgery to remove what we thought was a large & benign fibroid, but turned out to be a rare and aggressive cancer called leiomyosarcoma. (If you want to know more about lms, there’s a link from this blog, and you can read up on it.)
The first CT scan – in late June – showed multiple lesions in both of Annie’s lungs; small, but there.

We had planned a family vacation to the Adirondack Park before this diagnosis hit us and decided to stick with our plans, so that Annie could recuperate from her surgery, our kids could spend time with grandparents, aunts, uncles & cousins at my family’s summer camp on Upper Saranac Lake, and I could follow through on a directing commitment with my old friends at the Pendragon Theatre Company. While there we planned to weigh treatment options and see if we could get an appointment at Memorial Sloan Kettering, where they see and treat a lot of lms.

We got the appointment, Annie was resting, the kids were having a great time at the lake, I was having great time working on Julie Marie Myatt’s WELCOME HOME JENNY SUTTER with a lovely cast, the weather in the ‘Daks was great……but Annie’s tumors were growing. I mean we could feel them growing. So we got the appointment at Memorial Sloan Kettering pushed up a week and a half, and Annie and I went down to Manhattan on July 13th, leaving Hazel & Gabe with my family. We met with a sarcoma specialist there, decided to go with the treatment plan suggested during that appointment & to put Annie on a plane back to Seattle on the 15th, where her mom, Margaret, would meet her and stay with her through the first round of chemo. We thought it best to have me go back up to the ‘Daks, finish my directing job and fly home with the kids right after the play opened on the 22nd.

At the time, it sounded like we might be able to pull it off….BUT

The cancer didn’t want to wait. The second CT scan – taken the day before Annie’s first chemo treatment showed spread (beyond the lungs, which we already knew about) to the pelvis, mediastinum and Annie’s obviously enlarging abdomen.

Annie and her Mom saw more docs at Seattle Cancer Care Alliance on their arrival home, had the first round of chemo and her porto-cath put in all over a few days. The first round of chemo was rocky to say the least. The actual chemo session went fine, Annie brought her ipod and danced during it. Due to a combination of factors, Annie ended up extremely dehydrated after the first chemo and was unable to eat or drink, which sent her to the hospital in a big hurry, and me home with the kiddos in an equally big hurry. Haze & Gabe & I arrived in Seattle on July 19th. I think it is safe to say that those four or five days between Annie’s descent and arrival at Swedish Medical Center, and me getting home with the kids & over to the hospital were THE MOST CHALLENGING days of our eighteen years together. Nothing like a little FEAR to put every little thing in perspective.

Things have gotten a lot better. Let me say that again…THINGS HAVE GOTTEN A LOT BETTER!!! Annie received the second round of chemo at Swedish, where she’d begun to eat on her own, was going for regular walks around the corridors and was receiving the care of many wonderful nurses, as well as some powerful naturopathic care from good friends, Steph Kaplan and Leigh-Anne Fraley, who trained and flew, respectively, to Seattle to be with us. Margaret jumped in with the kids, so I could base myself at the hospital, and she spread some extra-special grandma luvin around; Hazel came in to visit Mommy at the hospital bearing gifts & hugs & stories, and I brought the Gabe-monster in for a brief visit as well, and he flirted and swaggered his little thug-boy self around the room & gave Mommy some good laughs and hugs. All VERY good medicine.

Annie tolerated the second round much better, and came home on July 23rd, the day after her second treatment. Though she has some pretty significant fatigue on board and some pain from time to time, the nausea is under control, and the pain is manageable. She hasn’t lost her hair yet, but Hazel & I got her a really cool baseball cap, so she’ll be stylin’ when and if that happens. We are currently enjoying a week off from chemo. Her white blood cells are low, so we are keeping germy-people away, which, at this moment includes me (sore throat) and boogey-nosed-Gabe….☹ Annie’s next chemo cycle starts next week, with treatments on August 5th and on the 12th. Then we have another week off, followed by a CT scan on the 21st to see how the regimen is doing. We’ll get the results on August 22nd. That will be a big day for us.

I don’t think I will be posting much of anything new between now and then, but we will check the blog to read any comments that come in, and we will update you when we know the results of the next scan.

There are a couple of things we feel strongly about and would ask you to honor if and when you comment on this blog. One is that we don’t want medical advice posted on this blog. Know that we are receiving focused, proactive care from a team in which we have confidence, and which includes an integration of conventional and naturopathic medicine. We’ve done a lot of research, and we know a lot of doctors, so we feel covered there. If you have a brilliant idea you are burning to share with us, please contact us in person, rather than posting a comment here. The other is that though we know this is a rare, aggressive and advanced cancer, we have enormous hope for a positive outcome for Annie, and we are finding data to support this hope. Dr. Keohan at Memorial Sloan Kettering told us that we need to look at lms like a chronic disease. We’re in for a marathon, not a sprint, and we are putting all our focus on the long haul. We’re talking Gabe’s graduation from HS here people!!! Please be with us on this.

Thanks for all the positive energy coming our way. We’re feeling it, and we send much love back to you.

XOXO Anita, Annie, Hazel and Gabriel