Crazy Sexy Cancer in Seattle

Hi all, I am not on an aromatase inhibitor because my onc and endocrinologist felt it was too risky with my pancreas issue. The a/i meds can have the side effect of raising triglicerides which would raise my risk of pancreatitis to very high. I go in for labs this week and hopefully things will be good enough for me to start an aromatase inhibitor.  I could do Nov or Dec for a get together. I hope you are all enjoying this perfect fall weather we are having! I have to go finish my spooky decorating outside at our driveway gate now.

Jessica -- Good luck Wednesday!  Know that you will be in my prayers and thoughts.  You are strong and I am sure you will do very well with the surgery.  Having experienced Swedish hospital teams, I think they will take very good care of you and be attentive.  I was impressed when I was in there and I'm very picky about such things!

Peg

Hi all,

it's been awhile since I popped in to see what was going on; I'm sure sorry I missed the September gathering, as I was pretty jazzed to meet so many of you during the summer <sigh>  oh well...

I'm going in put my two cents' worth in on the ooph surgery conversation - I had both ovaries out cuz I had a big cyst on one that didn't resolve, and since that throws one into menopause, I'm on Femara, and have been for a year now.  plus, my onc had said something about needing to have a once-a-month shot in my hip bone (!) on tamox.  it's definitely raised my cholesterol levels, both LDL and HDL, and I had bad response to Lipitor, so I'm trying to control it just with diet.  I'll see how I'm doing in another month or so.  however, there was never any discussion of avoiding the hormone suppression therapy, with or without my ovaries.  my ob-gyn was in on the discussion with my onc from the beginning, so maybe I was lucky to get both points of view without having to work at it too hard, I don't know.  regardless, I'm very happy with that decision, and glad it was an option for me; I don't know if it would've been without the large cyst that was there for several months.

here's hoping everyone is well enough to enjoy the nice week.  anyone know how much the Kathleen Sutton Inspirational Fund raised at the auction this last weekend?

Kalen

I was at my 3mo appt today and the nurses were talkng about these wigs. Sounds interesting. I HATED trying to find a wig and never really got one I liked. Having a wig of my own hair would have been so much better.     

Peg - I was so impressed with how your wig looks, I'm not surprised it is from Anton's.  The program interviewed the two men involved and it was really impressive and touching.  I want to do dragonboating this year - got on the list and am waiting for a call.  Looks like great fun!

I too wish I could have gotten a wig from Anton's.  My GP told me about them shortly after my dx, but the cost was pretty high for me.  I have met other women who have them and they are beautiful a work of art!

xxo.....Tina

 The following is my synopsis of a weekend retreat at Friday Harbor with a group of surviviors .... if some of it doesn't make sense I apologize, I had posted this on a group site on Facebook where I have been chatting with a group of gals since Jan 2008. 

Where the heck did the week go??? I can't believe tomorrow is already Friday ... guess that is a good thing , looking forward to a 3 day weekend.

Last weekend's retreat was unfriggin' believable. Thirteen survivors and a couple speakers and coordinator met at the Seattle Cancer Care Alliance Friday morning, hopped in a comfy bus for a 90 minute ride north of Seattle to board a ferry boat to San Juan Island. Skies we're blue, and you could just feel that it was going to be a good weekend. We arrive in Friday Harbor, and the bed and breakfast we we're to stay out was a walk away from the boat.

Ginny and I had a very large room with separate sitting area with a gas fireplace, jetted tub, and nice little deck. We laughed as it would have been a nice place to be with a spouse !!!! The first night we we're treated to an exquisite dinner at a small restaurant that is owned and operated by the B&B owners about a half a block away. Yummy !!!! After dinner we headed back to the B&B and had a interesting discussion with the former Chaplain Debra Jarvis at Seattle Cancer Care. She is a survivor of bc herself, and has written numerous books including one entititled It's Not About the Hair. Talk about a "hoot" of a gal. It ends up that she has had a mastectomy (same surgeon as I) , did the same chemo as I (hence the title of the book you know we we're the lucky ones to not have lost hair). This woman is a riot ... I had done a power read of her book once I knew she was going to be attending the retreat. I mentioned to her that I so enjoyed her sense of humor, especially when she wrote about going to a sex shop to buy a dildo , so here we are standing and waiting for a ferry boat and she is telling me the story in person .... okay , maybe you would have had to be there, but this chaplain could probably entice me to attend a organized church !!!!! Hit the hay about midnight.

Saturday morning we we're up early and chose to attend a yoga class at 7am. Had an awesome breakfast and then had a great discussion on nutrition. Next we we're off to a art studio about a 15 min drive away and had a workshop which had us look at our own fears. This was a bit of a mental challenge for me ... I definitely prefer to live my life with my head in the sand !!!! After a pretty emotional dialogue from many, we we're now off to the other side of the island to a park that houses a lighthouse and we had a guest speaker who tracks the Orca whales that live in the waters. To listen to this woman talk about the whales was awesome .... Talk about work with a passion. Unfortunately no whales for us to see this day, although they had been there the day before. I have just looked at Jeanne Hyde's blog (she's the whale lady) and shucks the pods we're back this week. Another great dinner, this time at the B&B, salad, a variety of gourmet pizzas, and red/white wine. After dinner we we're scheduled for 45 minute massages. They brought in 4 massage therapist from the island, and may I say the gal I had was pretty darn good .... (not quite as good as my "Nancy" though). We then shared homemade icecream and toppings, and many retired to their rooms. Ginny, myself and two others ended sitting in the living room area and chatting til about 12:30 ... topic menopause and sex !!!!! One of the ladies was a psychotherapist which led to a very interesting discussion. Ginny and I we're finally back in our room and still chit-chatting til after one.

Sunday morning we skipped the yoga session and chose to take about an hour long walk around Friday Harbor. Had another great breakfast and then another discussion led by the Oncology Physical Therapist from SCCA. Next we we're on to a cooking session led by the inn keeper. We made a butternut squash soup, homemade bagels, and some delicious oatmeal cookies. Shoot, the weekend just flew by, we we're packing our bags to head back to reality by about 1pm, for myself I ended up getting home after not one but two ferry rides at about 8pm with my head spinning nothing but positive thoughts.

So this was a pilot program organized by Seattle Cancer Care Alliance (Women's Wellness Clinic) and sponsored by Safeway. Our cost was $100 which when I signed on had expected buffet type food, etc. It was not breast cancer specific, in fact one gal had received a stem cell transplant in 2008 for an extremely aggressive form of cancer. Another had lymphoma, and yet another had dealt with breast cancer as well as colon cancer. As with my Jewel friends, these women we're off the charts intriguing, and their stories amazing. The whole weekend was far beyond my expectations and of course sharing it with Ginny just added to the fun.

Note: Ginny is a very good friend whom got me involved with the Breast Cancer 3 Day last year.  She is a 70 yr old lady in a 20 year old mind set.   She has been one of the best friends's, fellow survivor and mom figure I could possibly ask for. 

Hi Ladies, I'm checking in from my bilat mast, R ALND, and total hyst from 10/7.  Let me just say the hyst is a piece of cake compared to the bilat!  I am so tender, especially under the arms.  There is some nerve damage on the R, I have limited sensation from the elbow up to the armpit.  I have two drains, I hope to get them out this week, but will most likely be the week after.  I'll get the pathology results this week.  I'm starting PT next week, and Zometa and Aromasin too.  TINA, I'll be thinking of you Tomorrow!

Peg, I hope your rads are still going well

Thank you for all the support and prayers!

Cheers247 -- So glad to hear from you and I'm so glad it went well!!!  You have been on my mind.  I know what you mean about limited sensation from the elbow up.  The drains are a pain but worth the effort and before you know it, they'll be out.  I wore a larger shirt that helped cover up the drain until I got it out.  Are you doing the ACTIVE program at Swedish?  I've been meaning to but haven't gotten around to it.

My rads are going well.  The staff really make it pleasant and it's so easy and quick.  Plus, free parking!  It's fun being in Seattle every day and I love the ferry ride.  I'm getting better at the New York Times crossword puzzle.

Hugs to all.

Jean, I too initially had an abnormal reading on my left breast.  I ended up having an additional US on it about 9 months into this whole gig.   After that diagnostic, everything looked fine.  I can only hope that you will have similar positive news.  As I was told, we'll keep a close check on "your remaining side".

So I've been holding off picking your brain in regards to some questions I have on reconstruction surgery.  I am presently on Dr. Keith Paige's (wait til hell freezes over ... approximately 12 months out from now) list for the DIEP procedure.  I've been battling a bit with GHC to get a 2nd opinion with another qualified surgeon in the area  .  I've received my latest letter from the Clinical Review Board which has denied a request to see either Dr. Neligan or Dr. Said at SCCA.  I'm now slightly in a hold pattern waiting for word back from JoEllen (RN) at the GH Breast Centers to tell me who at GHC is approrpriate for a 2nd opinion.   Any thoughts ???

Jessica, hang in there gal ... you've been tweeked literally top to bottom.  Getting those doggone drains out will brighten your spirits !!!   Trust me when I say, those crappy achey days will be a faint memory soon.

To Peg and Susan .... counting down the days ladies ... thinking a toast is going to be in order real soon !!!!

Get-to-gether .? .... will be heading south to AZ 20-30 Nov .... if a date other than that works for the group cool, if not Dec works for me as well.  

Be well my friends, Carol

Jessica - you sound great!  I hope you are still recovering well.  In case this is similar - my entire left arm was numb after my last surgery but it went away in a couple of days.  I think they had me strapped to the table a wee too tight.  Hope you have something similar and the nerves will be back soon.

Jean - isn't it great to have friends like this thread?!  So comforting to know that you are not alone - and you know that MRI's often have false info in them.  Please let us know how it goes!  I can't believe it has been 6 months already.

Carol - I am very interested in the next retreat- it sounds like it was an amazing event.

Hope everyone is doing well!

 S

Jean ,,,, thanks for your thoughts.  I initially had an appt with Dr. Stephens, then called back to his office to ask about his experience with the DIEP surgery, which he did not have.  YIKES, canceled that appt, and hence got my referal to Dr. Paige.  I do have Ann Asher's number from way back when ... good thought to give her a call as well.   I'll continue to jump throught the hoops !!!!

I'm out of the loop here, though do read daily. Here's my experience:

Harmony Hill = Pure and utter freedom from cancer. Nurture. Hours of yoga with permission to do it however you can, even in a chair. Food of the gods...local, organic, healthy but you would never guess. It tastes guilty. Walks, talks, groups, solitude, palpable spirituality, community, love. Amazing.