Dear Friends,
Life is asking us to practice the arts of flexibility, pro-activity and perseverance. Last Friday, Jan 16th, we received the results of
another CT scan which confirmed what we were already pretty certain was true; that the
chemo regimen Annie has been following since we began treatment, and which was very effective during the first several months, had stopped working. The modest growth we saw in the last CT scan had turned to “marked increase”, with most tumors doubling in size from the last scan, including growth of the tumors in Annie’s lungs. There are still no tumors in liver or other abdominal organs.
Fortunately, though this was obviously not great news, we were ready to leap! Annie had been able to see and feel the tumors growing between the last CT scan and this one and had begun to dig deeply into the lms listserve and other sources of info and review the testing we had done on the lesion that had been removed from her belly to help determine our next steps. She was able to talk with Dr. Keohan at Memorial Sloan Kettering (who has been designing our protocol) and Dr. Forcher at Cedars (a sarcoma specialist) before we received the results of the scan to check new treatment options, and with Buck Peters, our oncologist in Seattle, determined what to do next. The result? Annie started on the new chemo regimen the day after receiving the CT results.
I know. My wife is a RED, HOT SUPERSTAR. Next to slacker in the dictionary, you might find a bunch of your favorite folk (including yours truly), but never, EVER a photo of Annie B Ready!!!
Annie just got home from Swedish hospital, receiving infusions of the new chemo drugs. They are adriamycin and ifosfomide (with mesna), aka AIM, and are given over the course of five days. She stayed at Swedish for the duration, both because the protocol is given continuously and to monitor side effects. Annie toleratated the infusion pretty well and was able to do her yoga in the mornings and & Qigong at night for the first few days, receiving visitors large and small, getting in a little movie-watching (who knew they had such a good selection at Swedish!), and getting some rest. The last two days were a surreal experience, and we realize if she is to do this regimen again that we need to be a little more proactive about the crazy-making factor of living in the hospital for five days while being pumped full of some of the harshest medicines around.
When we got the results of the CT scan, I was in NYC on ACT business and was able to visit with my Mom and sisters, which was wonderful, but I have a homing device set to activate the moment the word ‘hospital’ enters a conversation and so boarded a plane bound for Seattle a bit earlier than planned, (praying that geese would avoid the engines) and managed to land myself a nap on the hospital bed next to my girl by mid-afternoon Sunday.
Annie’s sister, Cathy, was with Annie and the kids for the week I was gone and took amazing care of all, including wrangling a Gabe who decided she was fam right away, unleashing his fussiness and charm full throttle.
Where are we headed? To get back on top of these tumors, of course. We are aiming for regression and stability, so that Annie might be a surgical candidate. That is involving us learning to navigate the system and take charge of Annie’s treatment in a whole new, and much deeper way. At the end of this January, partly because we want more opinions, and partly because Dr. Keohan at MSK is far away and largely inaccessible to us, Annie has made appointments with two teams of sarcoma specialists, six docs over the course of four or five days in the Los Angeles area, at UCLA and Cedar Sinai. Why Los Angeles? There is much more expertise in sarcoma there than in Seattle, Annie’s mom lives in Pasadena, and if Annie is able to have surgery in the future, surgeons skilled at the removal of lms tumors are located there, and it will be easier for her (and our family) to stay there, if necessary. Dear friend and fellow doc, Leigh-Anne, is driving down from Santa Cruz to come to some of these appointments with Annie and her mom.
As the “go to” gal on the home front, I am here to tell you that our little family is doing quite well. Annie’s outlook is strong, positive, focused and disciplined. We have a plan again, and anyone who knows Annie knows that she needs to be an active engine on the planning team. Hazel is a tender, loving little girl; very attuned to Mommy and worried about her, but receiving enormous support from her moms and dad and Abba and cousins and friends and their families, and extra squeezes from us all. Gabe has turned a corner from our often difficult, yelling guy, to our extremely communicative, goofy, mostly happy, sometimes yelling guy. He is taking on language like wildfire and loves to list the names of all of his homies, and all of his favorite foods, and there are LOTS of both!
I am in big, all-consuming love with my wife and children and keep myself busy and grounded looking after them. I am constantly amazed and propped up by the generous and loving gifts we are receiving from our family and friends. People are still showing up to shop, or on our doorstep with meals, offering to take our kids fun and wonderful places, or getting in touch via phone or e-mail to let us know they are thinking of us. It is sustaining me and us, and we all continue to be so very grateful, and to know that we are blessed in our community.
Please keep the image of Annie and Hazel and Gabe and I scampering along the wonderland trail this Summer, with Mt. Rainier in the background and wildflowers all around us alive and well in your vision of us, because we need and would be immensely grateful for your strength and purposeful vision of us all. We love you. Thanks for being with us on this journey.
