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Sunday, April 20, 2008

Roadtrip to celebrate: No Evidence of Disease

I visited with my radiation oncologist (who now only sees me every 6 months), and he said that I appear to be clear of ACC and any other critters at this time. (He also said that no one has a clue yet as to what was in my skull back in November. Go figure.) My next MRI is towards the last of May, when my head/neck surgeon should give me a report on that scan's findings. In the meantime, to celebrate this declaration of NED, I am heading to the beach with my mom for a few days. (Why save an experience like that for when cancer comes back, anyway??) We will be in the Scion, facing the open road and looking forward to curling our frozen northern toes into some warm sand. I will have sufficient head protection, but hope I don't have to wear the full mask as I would have last summer. We shall see. I may use the chance to do a mobile post to this blog, so stay tuned!

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!)


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.


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…


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)

Thursday, April 10, 2008

What would you do if you only had 5 years left to live?

This philosophical moment is brought to you by my term life insurance policy. What would you plan if you had only 5 years left to live? What would you do differently, or what would you stick to doing the same way?

I have started reading (really reading) my insurance policies when I get the new updates, and was taken aback yesterday when I read that I could collect benefits from my life insurance policy since I have been diagnosed with cancer. I am glad that they make this available, and I might even use it later in life, if my version of ACC is as sneaky as others have experienced and returns, causing additional medical bills to mount up, but reading it took my breath away. I had forgotten (thankfully) how life-ending it felt to be told that I had cancer - and seeing that rider on my policy brought it back to me in a rush, as if it was June 30, 2006 all over again. I have no idea what the future holds - the cancer may come back soon, or years from now, or I could die from a completely different reason, but I am optimistic that the world will be hearing from the Cheeky Librarian for quite a while longer. On one level, I really think we have just today to make any difference - we might not be here tomorrow. The life projection figures for ACC are really good for 5 years, kind of slip at 10 years, and really not good after that. But the projections are not recipes to live a life by. In the past, I generally planned 10 years at a time, so planning 5 years at a time at this point in my life isn't much of a change (hey, I am middle aged, after all!).

I still hold on to the plan to head to the beach and be with family and friends if they find any other tumors - I am a realist, and would like to try a hedonistic lifestyle if I get the chance. But I am so glad I had the strength to return to work twice to a job I feel makes a difference in this world. If I had decided to cash in on the life insurance, and stay away from work, I wouldn't have met the people I have (hopefully) helped access the research information they need to become the health professional researchers and clinicians of tomorrow (maybe saving my own life in the future?). I wouldn't have participated as a team member in some of the exciting projects we have going at the medical library, and with my colleagues in the library profession (yes Virginia, librarians have exciting careers - consider becoming one). If I hadn't returned to work after the surgeons did that initial job on my cheek, the radiation series done to eliminate any microscopic cancer, or after the pearl removal in November, I wouldn't have been able to see my kids participate in some of the things they have done in the months since those medical treatments. (The Euro/US dollar exchange rate hasn't helped me, but we still have number one daughter overseas, having the kind of experience I had always wished for both kids!) Face it - I had the chance to curl up like a Cheeto in the middle of my floor with the diagnosis and treatment for cancer, but I didn't/couldn't/wouldn't consider it. Thanks to the support of my caregivers, my family, my friends, all cheering me on in their various ways, it was not an option that was in my mind (except during the darkest days). I would rather be paying for a Golden Scion than living like a Cheeto, and I thank everyone that has helped me stick to that plan.

Adenoid cystic carcinoma in the news

Kaiser patient gets surprise up-front charge
story also posted in this blog:
Check with your health care providers, especially before that next MRI - more and more of them are charging the copay/patient portion of the fee to you up-front. If you know it ahead of time, you might be able to work out a billing agreement with them, rather than having the office staff surprise you by asking for the money at time of service.

They will race to help a friend
This is the second race for the Physican Assistant Student Organization at Springfield (Mass.) College. Here is the website for the race: . I posted about their first race last year:

Family raises money for rare cancer in their mother's memory
This is another story on the upcoming fundraiser for the Live Like Andi Foundation, in memory of Andi O'Connell. A quote from Micheal O'Connell: "There are thousands of people out there like her that endure this and fight these cancers and diseases every day, and those people need to be celebrated." It is my honor to keep mentioning fellow ACC folks (or AdCC, whichever acronym you use) in this blog, to make sure they and their lives are celebrated.

Saturday, April 05, 2008

Adenoid Cystic Carcinoma in the news

Here is a great story by Jonathan Stein about how a community has pulled together for a person with ACC and their family - Seabrook [Md.] home receives makeover: It is also a story about how cancer doesn't respect the fact that you might be going through a ton of stuff already when it hits your life.
The family is staying at a Hilton Gardens - didn't I say earlier in my blog that the Hilton is the best hotel chain EVER?! Nice to see that they have heart, as does the entire community of Seabrook.

Thursday, April 03, 2008

Off topic - the Scion now has vanity plates

I just had to report: I received word that my application was approved for vanity plates for the new Scion xB that is in my garage. After April 23, the Scion will be known as the: CHEEKY1.
You can read more about the Scion in my other blog posts:

Information for Lydia and others searching for answers

Lydia wrote a comment on the MayoClinic post, asking about more information about hair coming back after radiation, and how to deal with radiation side effects. The thing that helped me most to plan for side effects was to go to my nearest medical library, ask them for information on radiation side effects, and took the information they gave to me to my radiation oncologist to discuss which ones I would be dealing with.
One site that the library sent to me was MedlinePlus, where there is a Health Topic page on Radiation Therapy:
You can also locate a library at MedlinePlus (either public or medical) that has said it would help you with medical questions:
Another source of information for you might be a cancer support group, specifically one that deals with head/neck/oral cancer and its treatment. You can often find out how others have coped with cancer treatment and its long term effects. The group, Support for People with Oral, Head, and Neck Cancer [SPOHNC], has a page listing local chapters here:
Keep asking your questions, and make sure you write down the answers you receive, so you can refer back to them later. I have found that the radiation oncology nurses are a goldmine of information and support - ask your questions to them as well as your oncologist. Your husband is very lucky to have your support on this difficult road that you both travel.
As to my individual case, in case this information is of use to someone else: Now that I am over a year out from the last radiation treatment, I find that changes are not coming as fast as they were right after treatment ended. Some things, such as mouth soreness, have eased up in my case, although I cannot yet tolerate real crunchy or hard food, and some days tomatoes still make me get mouth sores (but hey, I was allergic if I ate too many tomatoes before the cancer, so no biggie.) I doubt that I will be able to do spicy foods or alcohol ever again - but I have had enough of both of those before, so not too big a deal. Lack of taste has eased up, but still bad enough that I eat by texture (no meat, and other things are on a case-by-case basis). My saliva level has improved, but I still shy away from sweets, bready foods, and sugar drinks, since my goal is to keep my teeth. I have some pain to the touch around the jaw that received most of the radiation, so I still don't hug people on that side, and have to cover my face up against extreme cold and hot weather. The hair that I lost on the left side of my head has just about all grown back, with the exception of a strip that follows the facial nerve to the skull base - that is still bare, and only serves to drive my hairdresser crazy when I get a haircut (she has a hard time getting both sides even now).

Adenoid Cystic Carcinoma in the news

Story from Coon Rapids, MN -
Retiring Chaplain Relies on Humor, Family, Faith:
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