Sunday, April 13, 2008

Report on the recent historic North East ACC Get Together

[This report is from Dan Dube', a fellow ACC survivor. His account of the Get Together and what research may result from it is so important, in my opinion, that I requested and received his permission to post it on this blog. I regret not being able to attend, but plan to attend the next Get Together, whenever it is scheduled. -th]

ACC Survivors,

Here is my personal report about the North East ACC Get Together I attended that was held last Saturday, March 29th from noon to 4PM at the home of Jeff and Marnie Kaufman in Needham, MA, just south west of Boston. We are all so thankful to them for opening up their home to us and hosting this great time together. This message is being sent out to three groups of people: everyone who attended our gathering, everyone who had expressed an interest in coming but was not able to do so, and the NW ACC group who I am very closely linked with and many who wanted to hear about this gathering.

I believe that this was historically the largest gathering of ACC survivors ever. We had 13 ACC survivors from 8 states in attendance, with a total of 24 people including the family members. There were quite a few others who initially expressed an interest, and some who were planning on attending, but at the last minute had conflicts that prevented them from coming. Such is the reality of all of our lives and the many priorities we must balance. Jennifer Dodge, Marnie Kaufman and myself all worked together to organize the event, which truly was an example of the power of collaboration. My three day trip to Boston also involved a tour of a lean manufacturing plant in Hartford, CT, spending some quality time with Jeff and Marnie, a trip to the MIT museum to see some excellent cancer related exhibits, and managing to navigate the crazy Boston streets and freeways to visit a few other places!

I have attached two pictures of the group for you that were taken on the front steps of Marnie’s home when we finally got organized and flowing together! Aubrey did an excellent job and the quality is so good! One of them shows just the 13 survivors, and the other one shows everyone who attended. Here is the list of the attendees in the picture of the complete group, with the name of each ACC survivor identified with a * after their first name.


(Bottom 2 stairs seated)

Kara* Gelb, Linda* DiLenge, Sharon* Klein, Patricia* Tessari, Dan* Dube', Jim Repka,

(Center 2 stairs seated)

Brett* Casteel, Marnie* Kaufman, Shari* Repka, Jackie* Rossier, Jennifer* Dodge, Mike Hall (husband of Susan Smith-Riedel)

(Top stair seated)

Lara Casteel, Susan* Smith-Riedel, Sandy* Baer, Tom DiLenge

(Standing in back and crouching!)

Stuart* Taylor, Stuart Klein, Barry Kahn (husband of Sandy Baer), Joanne Seblatnigg (sister of Sandy Baer), Jeff Kaufman, Eben Tessari, Chuck Rossier

(Not in picture, but the person who did the photography and provided much support: Aubrey Conquergood, Marnie's sister)

We had a scheduled agenda, it was discussed as a group, it was sent out in advance, it was posted on a white board, and we sort of followed it… but getting things moving was like herding cats for me!! For those who know me real well, I like to keep things all tidy and organized, but I have really worked at learning how to go with the flow. I really appreciated how everyone stayed really flexible and we really did have a chance for everything important. Overall, the whole day was filled with lots of laughter, chatting, connecting, building new relationships and enjoying everyone. There was so much energy, introductions and discussions from the very beginning, and the support for one another was incredible.

Here’s what we did:

Noon to 1:15 LUNCH

Marnie provided us with an excellent Italian lunch with multiple dishes, salad from Jennifer Dodge, a great assortment of drinks, and a very nice flow. The floor plan was excellent for this sort of event with plenty of room to serve food, multiple places to sit, nice sunshine outside, and a very warm, yet cheery atmosphere.

1:20 to 1:30 PICTURES

We took the pictures on the front porch with most people cooperating! (Again… herding cats!)

1:30 to 2:45 GROUP DISCUSSION

We sat in a big circle and did the classic “ACC Group Sharing” time. For each and every one of the ACC get-togethers that I have attended, this has always been the most meaningful, emotional and supportive part of the day. We simply went around the room and every person had a chance to share their story of ACC and their life with the rest of the group. We set some guidelines for how long to take (3 minutes each), the types of subjects to be careful with discussing (avoid sex, politics and religion… which some of us sort of followed… but not absolutely everyone!!) and most of all, for people to share what ever they were comfortable sharing with the group. No expectations… just freedom and acceptance. This time of sharing and discussion was filled with a lot of laughter, tears from many of us, (even some of us guys… yes it’s true… guys do cry), passing around the Kleenex box, feeling the safe atmosphere, very compassionate understanding, sharing of difficult challenges, more continuous laughter, hearing some answers, and much hope.

2:45 to 3:00 ACC Research Foundation UPDATE

Jeff Kaufman shared some updates with the group about the progress of the ACC Research Foundation that he and Marnie started up two years and the tremendous hope that is emerging. He provided everyone with a multi-page handout of the research agenda showing the details on the amazing progress made so far, the next steps that are being taken, and all of it very clearly documented. He also let everyone know that he is working with a group of people to provide more patient focused information on the ACCRF website for those who find the website and are looking for some answers regarding their ACC.

3:00 CLOSE THE GROUP DISCUSSION

I provided all the survivors with a hand out of some sample documents for the types of information I am working on putting together to add to the ACCRF website that address coping, surviving and dealing with the many life issues surrounding cancer. I made the decision to not spend any more time with group discussion (we had sat on our butts long enough!!) but let everyone know I would follow up with an email that would explain the handouts and asking for feedback. We also had a birthday cake presentation for Kara Geld since it was her birthday, and for Linda DeLenge who was celebrating two years post-treatment and being cancer free. A very rich, unique version of “Happy Birthday” was sung for both of our survivor friends…

3:00 to 4:30 INFORMAL CHATTING

This was informal time for having dessert, one-on-one chatting and small group discussions. This was the chance for people to discuss their treatment choices, compare experiences, ask questions, share stories and touch base with others now that we knew a little bit more about each other.

I want to close this report with telling you about two very meaningful gifts that I got the chance to present. I brought a “15-in-1” screwdriver from Tacoma Screw Products where I work that I gave to Jeff Kaufman as a gift. This particular tool is a big seller for our company because it is a high quality screwdriver that has a great variety of screwdriver bits contained in the handle. The analogy I gave to Jeff was that finding a cure for a rare cancer requires looking at a whole bunch of tools (types of screw driver bits) to find the single one that works. That is the challenge that Jeff has spearheaded, and I wanted him to have this really cool screwdriver that he could use around the house, but also to see it as a reminder that many of us are eternally grateful for the miracle of real hope he has brought into all our lives through the ACCRF.

And then I had the chance to present to Marnie a small, decorative, counter top plaque that said “There’s no place like hope.” It was amazing how the cheery yellow and blue colors were exactly matching to the d├ęcor in Marnie’s rec room. Amazing synchronistic coincidence! The story behind that plaque goes back to several other connections in my life. That plaque was given to me several years ago as a gift from Nancy Martin who was an ACC survivor I had met when she had come from Atlanta to Seattle for neutron radiation. It was something that I have kept right next to my computer all these years. I saw this as an opportunity to “pay it forward” and continue to spread the encouragement and thanks to Marnie who has been so meaningful in my life.

The other connection with this plaque was that at our very first NW get together in Seattle back in 2001, Marnie Tamaki, the mother of Danara Stewart who had ACC, had brought a ceramic plate for each of us that had that same message, “There’s no place like hope.” I had taken that ceramic plate with me to the first ACC get together in San Diego a year later, and had presented it to Prudence Jackson as a way of thanking her for her stupendous efforts in starting the ACCOI support group. So both of these Marnies in my life have a strong connection with ACC, and in a very similar way have been a link to the message of hope.

On the back of that plaque was a quote I read to our group that really says what I experienced during my few days in Boston. As I read it to the group and then presented it to Marnie, my emotions of my 10 years of dealing with ACC came to the surface, and I began to cry, and Marnie and I shared some tears and a hug with some very deep mutual feelings of gratitude. I think we can all gain something from keeping this quote in front of us as we move forward in the days ahead to work together to find a cure for this disease, and support each other in our individual challenges…

“The journey has always been about laughing together, loving each other, seeking adventure, believing in our dreams and making a difference… but sometimes we forget.”

We can all get wrapped up in daily life and forget about the really important things addressed in that little quote, but I hope that through events like this gathering we can all be reminded of that little bit of wisdom and apply it in our relationships with each other in the days ahead.

Your friend and fellow survivor,

Dan Dube'

Puyallup Washington (south of Seattle)

3 comments:

Anonymous said...

Hi Theresa,
I just started to read through your blog... starting from the first post. Thank you for doing this. I am sure you found it so theraputeic for you but it is also helping me. I am 2 months post proton beam radiation for ACC of the parotid. I hope we can connect sometime. I dont have a blog or anything but I am ppofct on the rare cancer alliance.
Thanks again
Barbara

Teresa Hartman said...

Hi Barbara! Welcome to my blog, and I am glad if it helped you even a little bit. I am sure we are going to connect sometime - bound to happen. I have posted to the Rare Cancer Alliance, and am working on a tip sheet for others to use when seeking out information. You can email me at teresa dot hartman at gmail dot com, anytime.

Anonymous said...

I am sorry to say that Shari Repka (one of the pictured attendees of the April Survivors Group) passed away on July 14 at home in South Brunswick, New Jersey of matactisized bone cancer. The bone cancer did not respond to 2 couses of Chemo.

 
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