Sunday, March 1, 2009

Moving On

March 1, 2009

I finished 2 rounds of AIM (adriamycin and ifosfamide) in the hospital.  Very brutal treatment.
Last CT scan this week, confirmed big growth of the one tumor that is palpable in my belly, but luckily revealed that everything else is stable.  We are finally moving forward to the treatment I have been wanting to do, based on the molecular profiling and instinct.  We will be starting Abraxane (which is a cousin of the drug Taxotere that worked so well before) and cetuximab (Erbitux) which is not a chemo drug but works in a different way.  We hope to start on Tuesday March 3rd.

We are also starting, thanks to our dear friend Stephanie, to incorporate whole body hyperthermia, with a sauna that is being delivered early next week.  Hyperthermia is being used widely in  Europe in the treatment of cancer.  I am also trying to get back on track with some of the naturopathic treatments that I got thrown off of with these hospital stays. Glad to be moving beyond that phase. 

We are looking for some shrinkage and stability which would lead to the possibility of surgery as well.  

We have had a website created for us which is where we will put all future postings.  It includes a link for a fundraising effort which is beginning in earnest.  The goals being to keep our house and help with the medical bills.

The address is:    http://www.anniesarmy.com

We ask for a big push in visualization and prayers for us over the next six weeks!
Thank you for all your support and love!

xoxooxxo
Annie & Anita, Hazel & Gabe




Tuesday, February 10, 2009

Quick Update

Annie here.  Went to LA, great to spend so much time with my Mom and my friend Leigh-Anne came down for a bit as well to come to some of the doctors appointments that I had lined up which was lovely. Went to consult with 6 docs (UCLA and Cedars), two oncologists, two abdominal/pelvic surgeons, two thoracic surgeons, all sarcoma specialists.  Good thing too as they all had different things to say, some more hopeful and helpful than others.  Returned home with one of each that can help with my care.  

I had a PET/CT scan right when I got home to see whether there was growth despite starting AIM, which I suspected, but the scan was equivocal.  So, I am back in the hospital for one more cycle of AIM, then we will have a CT scan and see whether to move on or possibly do one more round.  The next chemo regimen would be one that is based on the molecular profiling I had done on the little tumor removed from my belly.  The oncologist in LA thought it was a good choice, and after some education my gyn/onc here has agreed to implement it, and my insurance company has agreed to cover it, which is great because we officially go off-roading with that treatment.  Those drugs are Abraxane (which sounds like a super-hero) and Erbitux (which sounds like something I would prescribe).  Anyway we'll see how this AIM does.  The surgeons are both prepared to operate (belly first, or belly and chest together, possibly) when I have some stability (hopefully shrinkage and stability).

The AIM is tough.  In-patient 5, really 6, days.  Drip 24 hours/day.  We are doing our best to make it bearable, with visits, and sleeping, and walking, movies and art, etc.  The chaplain came by today, and it turns out he is a Buddhist and did a Medicine Buddha meditation/chant for me, which was very special and surprising.  I have a beautiful Buddha art from Lenny in here with me.

Keep sending those healing thoughts.

More later.  Love, love, Annie

Friday, January 23, 2009

Update 1/23/09

















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.