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MY TIME AT COMMMONWEAL CANCER HELP PROGRAM IN BOLINAS, CA

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

hi sisters,

back from a week at commonweal, and it was truly amazing; too spiritual for my taste, but not offensive, and i could take what i wanted from it. no one was pushing anything, it's just their strong bent. i, for one, will never, ever experience cancer as a "gift", but maybe others have done, or do now.

to give you an idea of my days there: wakened by our "house mother" at 7:15 am (all 9 of us had our own rooms in what was once a hotel, now renovated, and very nice). quick shower so we could walk across the property (about 12 minutes) to the yoga studio, where we did light yoga, breathing and stretching, and deep relaxation for 2 hours. then back to our house for a fabulous, nutritious, healthy breakfast. then off again to group therapy in another building for another two hours. then lunch, another great meal. after lunch we either had massages, an individual consult with a therapist, a sandtray session or a meeting with one of the founders, michael lerner. of the nine women in our group, two were caregivers, and the rest of us were in various stages of struggling with cancer, although many were doing quite well, thankfully.

then dinner, again delicious and health, mostly vegetarian except for some fish, and after dinner a discussion of various topics including death and dying. very instructive. the one point i learned, though a little late for most of us, was that most errors are made re: our first pathology reports. we were counseled strongly to get second opinions on those, especially if there were any question or ambiguity about it. i met with the exec director, not a doctor, but extremely knowledgeable about treatment, who had access to medical data bases the rest of us mere mortals do not. she did some research for me, and recommended that i have my tumor markers checked, even at this late date, especially for overexpression of her 2, which has been written about here. also gave me names of two prominent physicians in the bay area at ucsf who do research in uspc. once i get the results of my ct/pet scans at the end of this month, when i meet with my doctor and go over treatment options for recurrence, i'll probably make an appointment with one of the recommended doctors.. my doctor ordered the tumor markers for me so i'll know a lot more at the end of the year. the director is still waiting to hear back from a gynonc she thinks highly of, for more recommendations for second opinions re: treatment. she went way above and beyond the call of duty. in fact, all the staff did. i have to say i've never felt so well cared for ever. and jena felt the same.

the greatest value, however, were the group sessions, not only what we learned from each other and the therapist/facilitator and what we were able to say to one another about how we feel (not just about cancer), but the incredible bonding that occurred amongst us. such an unlikely mix of 9 women, about as different from one another as you can imagine. most of these women will continue to be in our lives, and will be in contact by email, phone and in person when possible. i have to say that warm relationships are, i believe, the most healing aspects of our lives.

the week feels like a dream--where everything is taken care of for you. even had a private consult with rebecca katz, the author of the anti-cancer kitchen, who drew up a customized diet for jena and me, healthy and delicious. she was great. the only problem in general was there was not quite enough free time to just hang out, take walks on the gorgeous grounds overlooking the pacific ocean. there was quite a lot of rushing from one activity to another, because there was so much ground to cover. also had a group meeting for a couple of hours about how to create a sacred space for oneself, both in our homes, and inside of us.

the group sessions were filled with laughter, which would not have been possible without the wrenching, tear-filled work we all did together. the sessions were structured and some not, but mostly some ritual/ ceremony something to get us started. the staff were there every step of the way to make our lives more comfortable in any way. everyone was genuinely kind and knowledgeable, and casual conversations at meals with staff often yielded important information.

mostly commonweal is about healing and hope, not optomism or cure. they emphasized getting rid of as much stress and clutter in our lives as is possible. both jena and i came home feeling much more of an inner calm about whatever may lie ahead. hope it lasts. i wish everyone dealing with cancer could have this experience. many of the staff, you won't be surprised to learn, have dealt with cancer in their own lives, and know whereof they speak.

there is so much more i could say, but i'll end here, and if anyone has any specific questions, etc., please let me know, and i'll try to answer them.

sisterhood,
maggie

Always Hopeful
Posts: 234
Joined: May 2010

Thanks, Maggie. It seems that you and Jena had quite an amazing week. As I read your posting, I couldn't help but think of an experience I had some 36 years ago. My then husband and I came back from a structured "marriage" weekend and just couldn't find the words to express to others who had not experienced this type of weekend how we felt and what we walked away with. I'm wondering if this is partly what you and Jena are experiencing now.

To be so taken care of...body, mind and spirit...must have been remarkable!

Enjoy the afterglow of your week...and, thanks again, for sharing some of your experiences.

Peace and hope, JJ

llight
Posts: 99
Joined: Feb 2010

Maggie, sounds incredible! Thanks so much for the recap. The one thing that stands out so much is keeping stress levels down. This is something I've been wrestling w/ in my mind. My gut says it is very important. The cultural message is one of minimization. Thank you for this and all the other details. Very informative. I'm glad you got something good out of it. And thank you so much for sharing.
llight

Northwoodsgirl
Posts: 498
Joined: Oct 2009

Maggie,
It sounds like you had a very fulfilling experience. It is interesting to see how bonded we can become with other women who are fighting cancer or working on surviving. I would like to hear more about the nutrition advice you got. I will see if I can find information from Rebecca Katz. Know that I am praying for you and all the sisters. Thanks for sharing or experience.
Blessings,
Lori

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

NO STRESS! IT'S THE WORST THING FOR US. it's so hard to accomplish however, given our lives. still, even in the couple of days i've been home, i've managed to let people know who i started to feel stressed by (my adult children!), that they had to calm down, etc. around me. they get it.

some of the specific foods katz recommended to us, given our tastes, were cashew and almond butter on apples, no fruit juices, whole fruits ok, no braggs, no agave nector, very little soy, sweet potatoes ok, crab ok, salmon and black cod better, two brazil nuts a day!, natural living foods, farm fresh eggs, sea salt--fleur de lys (sp), almond mylk (spelled that way), green tea with lemon, older wine, coconut milk, pumpkin curry, yellow thai curry sauce, thai coconut soup, fermented miso, a little tofu, raw sprouted almonds--are a few. mostly we knew what not to eat, and what we could eat. she added to our repetoire. she said a microplaner (about $12) which is a zester, is a must. also said if we could afford it, a vitamix, no processed soy sauce, tamari soy sauce instead, dark fruit, blue/black best, a little maple syrup, a little honey.

hope this is helpful,
sisterhood,
maggie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I can hear your new peace, Maggie, although your decision to go there affirms that you were well on your way to coming to terms with your journey even before you left. I'm so glad that you did this. It really sounds like such a wonderful experience!

I like the recommendation for HER2 testing; so MANY UPSC cancers are HER2 positive and that opens up Herceptin as a targeted therapy. (My assay showed I am HER2 negative, but I got the impression that this was not typical of UPSC.)

So "no agave nector" means margueritas are out??! HA!

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Thanks for the detailed update. It sounds like a very enjoyable experience. Glad you benefited in Mind, body and soul. I too wish we could all experience it. Good luck with your food choices and reducing your stress. Glad you met so many wonderful women. In peace and caring.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Maggie, I have been anxiously awaiting your update from your week at Commonweal. It sounds like it was a wonderful experience. A very intensive session but also very rewarding and supportive. Your schedule did sound very busy!! It takes a great deal of courage to do the soul searching that is needed in a session like this, and I applaud you for your honesty and openness.
The nutrition info was fascinating. I need to check out Rebecca Katz’s book again from the library But to have a private consultation….that is very cool! I MUST ask….how is Almond Mylk different from Almond Milk? I am very curious! Does mylk mean than you made it yourself, rather than purchasing it? Also, I had not heard about the value of Brazil nuts…will have to do more reading!
You have done a wonderful job summarizing the experience and I bet as a result, others on this discussion group may some day attend a Commonweal experience. I am sure that every day you remember more things that you learned and am glad to hear that you are working on ways to reduce your stress. I am a big believer in the role stress plays in our lives and agree that we need to make every effort to reduce stress….relax, laugh, live and love!!

Welcome back and thanks for so generously sharing your experience.

Karen

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I've always dreamed of a nice spot to sit and be pampered and also learn. This sounds like where you were. Wouldn't it be nice if we had this dream for each day of our lives. I could get into it, except need more down time, but understand they have a "packed" schedule and must get everything in.

I love the listing of "good foods" as many I've read or heard from others are good as well.

Thanks again for relaying to us, as it's very helpful and I'll walk away with many of your suggestions learned.

Jan

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Wonderful experience! Thanks for all the info. I will be interested to here about your follow up medical appointments.

The list of foods was interesting. Again good info. I liked your emphasis on eliminating stress and CLUTTER - I am working on this big time. Clutter prevents the chi from flowing in our homes per feng shui. My chi is clogged - big time. But I'm making progress and, I guess, that's worth something.

Continue to keep us posted. Thanks again. Mary Ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

the almond mylk is a product one can buy, it's not home made, but we did learn how to make it if we wanted. so, it's just a brand name, and not different from what you can buy called almond milk, or hemp milk, etc. it was the one katz recommended, so we got it. not bad.
katz was very cool, never met anyone so energetic. forgot to mention that sadja (sp) greenwood (noted author and gyn doc) was also consulting, but we missed out on her because she and katz were running over time, and sadja had to leave before our turn. she is the author of "menopause naturally," an excellent book i got at the time i went into menopause. it was a little disappointing not to meet with her, but given how much we did get, we were fine to just have rebecca katz.

the commonweal director just emailed me the name recommended to her from her gynonc friend. he's at standford and i emailed him yesterday to ask if he were an appropriate choice for a second opinion (i gave him a little background on my situation), he emailed me that evening and gave me his first available time in early january, so i'm making an appointment with him. he sounded great, will still follow up on the other two, can't have too many second opinions.....

sisterhood,
maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Maggie, I bought this several months ago and then read that it had cane sugar in it. Did they talk about this and can you purchase almond milk without sugar?? Soy milk can be purchased with or without. I would think that the cane sugar would be a no-no.

Mary Ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

geeze, never even looked at the ingredients of almond mylk. usually i use another unsweetened almond milk, with no sugar content, so think i'll stick with that. actually like it better anyway. will find the bottle of almond mylk and see what's listed.

thanx,
maggie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Maggie....things get complicated some times, don't they?

I just found another site re: Almond milk/unsweetened options that might be helpful. I will read more labels!

http://www.associatedcontent.com/article/1734098/three_almond_milk_brands_to_buy_pg2.html?cat=22

I'm with you....GEEEEZ!!

Karen

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

OOPs....double post!

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Maggie thanks for your response. I have not seen that brand of Almond Mylk but will look for it.
Mary Ann, I also tried some almond milk from Whole Foods and found it tasty but when I looked at the sugar content I was stunned. Figured that couldn't be good.

I have have done some googling and it appears rather easy to make. Plus I did read that their are commercial brands that are "unsweetened" so maybe we just need to look more. I found this to be an interesting web site and a VERY easy recipe to make your own. Was curious as to how this recipe differs from the one Rebecca Katz gave you, Maggie.
http://www.choosingraw.com/raw-101-homemade-almond-milk/

Maggie, how exciting to get such a fast response from the oncologist for a second opinion. That is VERY exciting! Please know that I am sending you lots of positive energy so you can be confident in your plan to beat this monster. And I am total agreement with you that I never found the diagnosis of Cancer to be a GIFT! No way!!

Best wishes always!

Karen

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

dear all ,

the almond mylk i have is UNSWEETENED. it may also come with cane sugar, but this one is free of all sugar. it was hard to believe katz would recommend anything with sugar in it. so easy living foods is the brand, and almond mylk is the product. so, no worries re: unsweetend mylk. i still prefer my other brand, pacific natural foods, almond milk.

sisterhood,
maggie

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I've been drinking this for a few months now, replacing good old milk. I purchase "unsweetened" at Walmart of all places. Not seen the Mylk line, but will check at possibly Whole Foods or Trade Joe's.

Mary Ann, I'd say to stay away from cane sugar, as I've learned thru my nutritionist. But...nice to see what Maggie suggests from her past event.

Noticed Maggie found no fruit juices, which is what I found as well. I eat lots of fresh fruits as all the seeds and whites of skins are filled with good nutrients. Also drink Whey powder twice per day and mix it in my almond milk with cinnamon & flax seed powder (latter loaded with Omega 3)...yummie!

Thanks,

Jan

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I did some Google searches for this (not a brand name) --

mylk is used to represent the liquid made from nuts.

Also saw lots of recipes for making almond milk from scratch...basically use almonds and boiling water.

Enjoy ladies,
Jan

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

Your experience sounds amazing! I wish my mom was open to something like this. Not sure if it would be better to send you a personal message but I'm curious to know what doctors you are referring to at ucsf. My mom is being treated there so it would be great to know that info. Also if you are looking for a second opinion regarding chemo etc I highly recommendd our medical oncologist. Let me know if you are interested in recommendations- id be happy to send you his info.

Kind regards,

Amanda

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

no problem saying who the doctors are at u.c.s.f.: dr. john chan and dr. i chow hsu. i was also given a name of a doctor at stanford, who i think i'll be seeing in january. thanx for possible recommendations. would be interested in your medical oncologist's name, if that's ok.
sisterhood,
maggie

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

Thanks for the info! My moms doc at ucsf is dr lee may chen- amazing gyno surgical oncologist- I believe she is also a professor there... her medical oncologist is dr garrett smith- amazing, smart, positive man. Great credentials and also believes in treating the whole patient so in his office there is also a fabulous nutritionist, massage therapist and an accupuncurist. They also have a wonderful nursing staff- honestly can't say enough good things about them. The chemo room overlooks the water and the bay bridge- beautiful. His office is affiliated with ucsf so whatever tests that are done- they both have access to. Dr smith has some reviews written about him on yelp too if you want to do a lil more research.

Kind regards,

Amanda

bots's picture
bots
Posts: 53
Joined: Sep 2009

Maggie, do you know why "very little soy?" I have been substituting soy milk for cow's milk as I read a study from Sweden that indicated that cow's milk was somewhat implicated in the serous pap carcinoma.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

actually, i don't think i know for sure; i've been assuming because it's linked to hormones, and we don't know the implication of more hormones on cancer. i wonder if we can google it and get a better answer.
m

nempark
Posts: 683
Joined: Apr 2010

Thanks for sharing your experience with all of us. It's amazing how the sisters can take the time to share good things with us. God bless all of you on this board. j

Double Whammy's picture
Double Whammy
Posts: 2826
Joined: Jun 2010

for the thorough description of your week at Commonweal. It sounds fascinating. There is so much more involved in living with cancer than chemo, radiation, and tests afterall. Hope your appointment in 2011 at Stanford provides you with more medical information to use in your decisions.

Suzanne

patsplace
Posts: 14
Joined: Nov 2010

Just read the rest of the discussion...My understanding is that the recommendation on minimizing soy is that it has estrogenic effects; estrogen feeds breast, uterine, and other reproductive cancers. The problem is in the total estrogen load, and there are MANY unavoidable circumstances that contribute false estrogens to the body--the chemicals in plastic food or beverage containers are a big one (the chemicals leach into the food...) If you are using soy milk in your coffee or tea daily, you are not only repeatedly taking in estrogenics from the soy, but also those caused by the plastic container the soy milk is stored in--a double whammy, every day. Also check your supplements and prepared foods for soy--it's added to lots of stuff; lecithin is a soy-based preservative found in many many many foods. So anywhere you can minimize intake of potentially estrogenic foods, the better. My naturopath recommends (and my fast & dirty internet research supports this) soy (in any form) at no more than 1 meal per week, or no more than a pound (fresh/raw) of tofu per month. I also understand that consuming fish or fish oil help to alleviate soy's impact (I haven't explored this in any detail as I don't eat fish).

The good news about the plastic thing is that the estrogenic chemicals for the most part dissipate within 24 hours, so if you transfer your foods to glass or ceramic containers as soon as you get them home from the grocery, you will minimize your exposure. Also note that cartons and cans are all lined with plastic, so are no better than plastic bags or bottles. You should NEVER cook food using plastic, avoid plastic or foam hot-drink cups, and plastic dishes (including water bottles) should not be put through the dishwasher--heating plastic increases its chemical off-gassing & leaching, even after it has cooled.

patsplace
Posts: 14
Joined: Nov 2010

Thanks for the review! I've known of Lerner's work for a number of years and applied to attend the Commonweal retreat in November. From your description, it sounds like just the ticket! Only wish I could go sooner.

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

if you haven't already done so, let commonweal know that you could be available sooner than november if an opening occurs, as they sometimes do. if you can, you may need to be ready to go in a week or so. another suggestion is attending commonweal and healing yoga one day retreat; it's also well worth it--you could call commonweal and ask when the next day-long retreat is happening. my partner and i attended one, and i believe (just a guess, no proof) we got in earlier than expected (april) because we got to know some of the commonweal people who were there and remembered us, and when space opened for two, they thought of us. just an idea.....
sisterhood,
maggie

patsplace
Posts: 14
Joined: Nov 2010

Thanks! I did indicate on the application that I could attend at the last minute should there be a cancellation. I live in Montana, so a one-day retreat there is probably not feasible. But there are several awesome hot springs near by that make for a immensely restorative weekend retreat. (If anyone is interested, my favorite of the developed hot springs in Montana is Boulder--check it out at boulderhotsprings.com.) Water is hottest at this time of year...:)

zarkapopovic
Posts: 30
Joined: Jan 2011

Dear Maggie,

I have been reading some of your posts and would like to learn more about the doctors you have tried in the Bay Area. I am considering switching from the Palo Alto Medical Foundation in Mountain View to UCSF but see you have some reservations about UCSF. Would you be willing to share your thoughts directly with me? Let me know and I can pass on my phone or email to you.

Best,

Zarka

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

actually, i haven't tried many doctors in the bay area, and don't really know enough to have reservations about doctors at ucsf. all my doctors are in the walnut creek/concord area. are you looking for a gyn-onc, or medical oncologist, because i have two excellent ones--but again, in the walnut creek/concord area. (although we live in berkeley, i followed my primary doctor from berkeley to orinda, then got an hmo, and had to see doctors in her cachement area. i really lucked out with my two doctors: i honestly feel my gynonc is the best surgeon in the world, but not the greatest bedside manner. my medical oncologist is a young, very smart woman, who i'd definitely recommend. . i did see a gyn-onc in atherton for a second opinion-- who has an excellent reputation, but i wouldn't recommend her. i've actually heard good things about some doctors at ucsf, so not sure why or where i would have expressed reservations. i had a doctor recommended to me, who i have yet to see, who's at stanford, and who came highly recommeded. his name is b sikic, goes by the first name brandy! i hear dr. chan at ucsf is excellent. that's about it.

sisterhood,
maggie

zarkapopovic
Posts: 30
Joined: Jan 2011

Hi Maggie,

Thanks for your reply. Branimir (Brandy) is a researcher not practioner, why were you recommended to him?

May I ask who your doctors are? I may want second opinions on my entering a clinic trial before I sign away!

Best,

Zarka

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

sikic was recommended because he could know research, trials, etc. that i could be interested in, though didn't know he wasn't a practioner, especially because he asked for all my medical records, etc. are you sure about this?

surgeon (gyn onc) is babak edraki: 925-627-3440; medical oncologist is: lesley martin, 925-674-2100. what clinical trial are you considering?

good luck,
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

do you have upsc? i'd be interested, especially if you do, if the clinical trial you're considering is for upsc, since it's so rare.

thanx,
maggie

zarkapopovic
Posts: 30
Joined: Jan 2011

Hi Maggie,

I do not have UPSC but when I went to the clinicaltrials.gov site it showed two trials that are open for your disease depending on your stage.

I do not know for sure that Sikic is only a researcher but when I looked him up at Stanford that is how it appeared from the website. It is wonderful that he has shown an interest in your case; I would think that the larger research institutions would be interested in you.

Best of luck to you and thanks for the info.

Zarka

zarkapopovic
Posts: 30
Joined: Jan 2011

I did more research after the last mail I sent see: http://waatp.com/people/branimir-sikic/9530946/

It does look like Sikic practices as he is one of the main clinical trial folks at Stanford. I wrote to him today to see if we could talk. I will let you know if I hear from him.

Zarka

zarkapopovic
Posts: 30
Joined: Jan 2011

He was kind enough to email me back yesterday morning and give me his opinion regarding my situation. Thanks for the lead.

Zarka

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

that's great! hope it helped. i may yet see him at some point. you're welcome.
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

that's great! hope it helped. i may yet see him at some point. you're welcome.
maggie

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