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

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

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.

A bit of a Setback...

Hello Dear Ones,

   Well, we got our first dose of somber news this past Friday; a change from the massively good news we've been receiving since Annie began 

the

chemo protocol we've been following since July, and which has proven so effective thus far.  It looks as though this cancer is finally developing some resistance to this regimen.  The CT scan showed a "mild increase" in the size of the tumors in Annie's lungs and abdomen/pelvis.   It's not that the treatment has stopped working, but it is not proving quite as effective as it was.  I think it's important for us all to remember that these tumors were huge only months ago, and though we're not crazy about the fact that they're not continuing to shrink and be gone at the moment, there is no new tumor growth evident, and the increase in existing tumors is incremental. Also, there was one tumor in her lungs that is smaller.  AND, Annie's kidneys, adrenal glands, spleen and liver are clean and clear.  

  So, where do we go from here?   Dr. Peters, our oncologist will be talking with Dr. Keohan from Memorial Sloan Kettering, the doc who recommended the protocol we're following, this week to see if there's an adjustment we want to make to the chemo we're using.  Also, there is one tumor that is subcutaneous - very close to the surface of Annie's skin on her lower belly - and easy to remove.  That will happen under a local anesthetic this Tuesday in Dr. Peters' office.  That tumor will be sent to a lab in California that can then examine and mess with it (my official terminology here) to see what it will respond to in terms of shrinkage and growth, depending on what they do to it.  This  could provide some really useful information for our team in how to treat this lms.  (Annie note here: we are hoping to have enough tissue from this little mass 1.1 X 1.1 cm to be able to do both chemo-resistance testing, to help guide treatment as well as tumor marker testing to give us more information about the behavior of the cancer so we can see if there are other approaches/treatments that might be useful.  So, it may be very lucky to have this little tumor pop up, it is so superficial that he doesn't need to get into my belly to get it and we may get some information from it.)

  Until we receive some sort of new direction in treatment that makes sense to us, we will continue to follow the regimen we are on.  It may not be as effective, but the fact that the tumor growth is "mild" , and that one is smaller, means that it's still doing something, and we want to keep pushing back with what we know is at least helpful before we switch courses.

  So, we dig a little deeper into our personal reserves of strength and faith, our warrior poses and all of the other mantras and routines that centers us, alone and as a family.  And we, of course, continue to thrive on and receive such deep comfort from our Annie's Army team.  We love you.    

Anita

Addendum from Annie:  Hello there, wonderful people.  

I believe one of the main reasons why my treatment has been so massively effective so far (aside from a great match with the chemo medicines and all the complementary therapies I am doing), is all the prayers and visualizations coming from this powerful community.  Thank you for that.  

If you are so inclined, I would be very grateful for all your continued prayers and visualizations.  With gratitude, I picture me (completely cancer-free), fit, vibrantly healthy hiking the Wonderland trail encircling Mount Rainier on a sunny summer day with my beautiful wife and kids (I see Gabe at seven or eight and Hazel a leggy fifteen), and I see myself surfing next year on a longboard, and I see Gabe's graduation and Hazel's first baby.  And in all these visualization I, of course, have fabulous hair and the kind of eyebrows that would make Brooke Shields envious!!!!

Thank you for being part of my healing.  With Love & Gratitude, XOXO  annie

MORE GOOD NEWS!!

Hello Team Annie's Army!

   Another post to let you know how we're doing, which, all things considered,

is  pretty freakin' great!

   

Had our last CT scan on Thursday and were told by our oncologist on Friday that he has never seen a patient with lms respond to treatment as well as Annie.  Tumors continue to shrink and, in some cases have disappeared.  Though there is still evidence of multiple tumors, ALL are smaller, and we are very encouraged that this regimen is working so well.

   Our biggest challenge now is to keep Annie strong to handle the next four rounds of chemo.  The cumulative effects of this regimen have been increasingly hard on her system, but with the psychological shot in the arm this last CT scan has given us, and because our docs feel we shouldn't mess with what's obviously working, we have decided to stay the course and continue with the current regimen, at the same dosage and on the same schedule - two weeks on and a week off - and do two more cycles (4 treatments), with our next CT scan on Thursday, December 4th; results on Friday the 5th.  Then, as usual, we will re-evaluate and see what's next.  

   We have fully grounded ourselves in what we were told, but didn't fully understand in the early days of this diagnosis: that we are involved in a marathon, not a sprint, and that we need to try to stay grounded and strong for the long haul.

   The News we've been getting is HELPING!!!... :-)

   Annie gets up every day and practices yoga, with Gabriel's....um.... help, and has become especially proficient at Downward Dog (Gabe, not Annie, though her down dog is pretty good too).  Hazel is our household Halloween and Harry Potter expert, as well as our unbelievably helpful Big Girl/Big Sister.  I am just trying to keep up with everybody.

   We are so grateful for the chemo doing it's work and know that, in conjunction with the complementary medical and spiritual practice Annie is focused on accounts for a big part of the reason she is doing so well.  The rest is all about Love, Hope & YOU.

   Thanks for standing with us. Forward.  All our love, Anita, Annie, Hazel & Gabriel

 

BEST BIRTHDAY PRESENT EVER!!!

Yup, it's my birthday tomorrow, so Annie decided to really do it up and give me and the entire Annie's Army team a REALLY GREAT present today, August 22nd, 2008.  We got to Pacific Gynecology Associates late morning for the results of Annie's CT scan and got the following news from our oncologist, and I quote from the CT report,

  "Marked interval decrease in metastatic disease within the chest, abdomen, and pelvis.  No new metastatic lesions identified."

In layperson terms, and just because I like to repeat the news of these results in any and every way I can (read - shout it from the rooftops!), Annie's tumors have shrunk - across the board - and there are no new metastases.  This is the first piece of really positive news we have received since Annie's diagnosis in June, and it is better than even our docs expected at this point.  As you might imagine, we are walking a couple of feet off the ground.  

We have always felt good about the medical team that's been evaluating information and determining and implementing treatment, but since that team stepped in, we've had quite another sort of  team step up to the plate and make a HUGE difference in our lives and to Annie's health.  That team is Annie's Army.  If you are reading this blog, please know that we consider your support, in the form of prayers, loving e-mails, gifts of time and music and shopping and childcare and reading material and hugs, and countless other kindnesses to be at least as important, if not more important, to Annie's healing as the chemo regimen she is following.  We can't thank you enough.

So where do we go from here?  We stay the course.  Annie will now undergo another three cycles (six rounds) of the same chemo regimen, which will take about 9 weeks.  Then we do another CT scan and look for more positive results.  We are, of course, looking for total eradication of all lms tumors and an Annie in complete remission.  Yes, this may take a while, but the way we are feeling today....well, first of all, we've GOT a while!, and secondly, we're feeling as though we can - with all ya'll beside us, conquer the world!

We send you our enduring gratitude and SO MUCH LOVE!

Anita, Annie, Hazel & Gabe

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