2nd Annual Adrenal Cancer Symposium

The second annual gathering of ACC patients and physicians will be held at the University of Michigan March 14-15, 2008. Register online if you plan to attend. It's free for patients.

Pilgrimage to Cambodia

Happy holidays! I recently returned from traveling to Cambodia and the Philippines earlier this month. It has always been a dream of mine to pay my respects to the largest temple in the world located in the holy city of Angkor, Cambodia. Since I was in the neighborhood, I thought I would also visit the motherland...the Philippines where I visited my family who I had not seen since 1981.

I kept a journal while in Southeast Asia and am currently working on transferring my hand-written notes online on tumblr.

Sending you wishes of good health, much love, and peace in the new year!

P.S. I am still day-dreaming of Cambodia!

Ryan's Legacy

From a December 8, 2007, article in the Lincolnshire News, UK.

LITTLE RYAN'S LEGACY LIVES ON

Date : 08.12.07

The family of a little boy who lost his fight against a rare cancer have set up a foundation in his memory. Ryan Brown, from Skellingthorpe, died on December 13, 2006 - exactly a month before his fifth birthday. He lost his brave battle against adrenal cancer, which affects less than 30 Britons a year. But despite his suffering, family and friends say they will always remember Ryan as a happy little boy. Ryan's grandfather Alec Brown (51), from South Hykeham, said: "He had been so brave and we will always remember the smile on his face." Now his family have set up the Ryan Brown Foundation to ensure Ryan's memory will live on. The foundation aims to raise awareness of adrenal cancer, send terminally ill children and their families on holidays to Tenerife, and boost funds to buy chemotherapy pumps for Great Ormond Street Hospital and the children's ward at Queen's Medical Centre, Nottingham.

Surfer Jeff "Midget" Smith raises awareness for ACC

Jeff 'Midget' Smith has cancer again, and the surf community is rallying behind him.

By FRED SWEGLES

SUN POST NEWS

As one of San Clemente's surfing icons of the 1970s, Jeff "Midget" Smith rode liquid mountains all over the world. Life was good. Since then it has been a rollercoaster ride – 22 years ago he was diagnosed with testicular cancer and, after a two-year ordeal, he beat it.

Now, after two decades of good health, with a blip in the middle, the ride has bottomed again. Smith, 55, was diagnosed with adrenal cancer. Unable to obtain medical coverage for cancer, he has struggled with his bills but sees an upside. He is confident he will beat cancer again, and the surf community is behind him.

On Oct. 27, friends will toss a benefit party at Duke's. On Nov. 15, OC Tavern will host a benefit. And in January, a benefit surf contest is in the works at the pier to help with Smith's bills.

"He has already gone through three treatments of chemo, and his medical bills are piling up," said Sean Haggar, general manager for Hobie Surfboards and Smith's son-in-law. The Midget Smith benefits will, for some, rekindle memories of a 1985 surf industry benefit for him that drew 400 people to the Coach House.

The Sun Post News asked him about life, friends and beating cancer.

Q. I don't want to make you shy or anything, but you were San Clemente's best surfer at one point in the 1970s.

A. Actually, at that point in time, probably, because the shortboard thing had just started to happen a few years before. The old-school guys couldn't adapt to it, so it was us younger guys who came along.

Q. How far did you take it, competitively?

A. I won quite a few amateur titles here. I did turn pro. I think my best finish was equal 17th in South Africa. I had a modicum of success, not a lot.

Q. In those days you couldn't make a living off of it.

A. No, but it sure was fun.

Q. When did you switch from pro surfer to contest judge?

A. 1978-79. I got tired of complaining about the judging and figured I'll do something about it. I was head judge here in North America for 12 years. Then I moved on to do the ASP World Longboard Tour as the head judge for five years.

Q. And all the while, you were making surfboards.

A. I started in 1969. I went to work for Hobie, general cleanup, making fins. I wound up spending most of my time watching Terry Martin shape. He caught me one day peeking around the corner and dragged me in.

Q. When did you start shaping your own boards?

A. 1972. Then I opened my shop in 1978.

Q. When did cancer strike you?

A. 1985. Testicular cancer, same thing Lance Armstrong had. They went in to take it out and found three other tumors of different types of cancer. It made it a bit more involved. It took two years to get through that whole thing.

Q. And they declared you clean?

A. Yes. I wound up going to City of Hope.

Q. And you couldn't get insurance after 1985?

A. I could, but they wouldn't cover anything that was related to the cancer. So I'm pretty much out on my own at this point.

Q. How did you discover the new one?

Q. I went to France in May and didn't feel very well when I came home. I thought I just picked up a bug. I started to lose a lot of weight, about 15 pounds. I knew immediately that something was up. This one is a carcinoma. It's on the adrenal gland, which sits on top of the kidney. They say it's fairly curable. I seem to be responding really well.

A. And your medical bills?

A. Pretty astronomical. One chemotherapy cost me $15,000, and I've got to have six of those. And I was admitted to the emergency room, and that one ran $20,000, just to go to the emergency room for three days.

Q. And insurance won't cover any of it?

A. No. So far, I've paid everything ... I've ruined my business, just taking all the money out of it. You do what you have to do.

Q. But you have the surfing industry behind you. It's got to feel good.

A. Very good. It's kind of surprising how quickly everything has come together.

Q. What are your hopes for this time?

A. I have no idea what to expect.

Q. Are you surfing now.

A. No. The chemo knocks the (heck) out of your immune system, so I can't take a chance picking up an infection from the water. The last time I surfed, a couple of weeks before I went into the hospital, I had a great time surfing.

Q. Are you judging?

A. I'm not judging at this point, until I get through the disease. I've already had to turn down a couple of jobs. One was in Chile, unfortunately! But I've got to get through this first.

Q. What would you like to say to the community?

A. Come on out and have a good time! I appreciate everybody coming through like this for me.

Q. If you had to say it, what would you say is your place in San Clemente surf history?

A. I'd like to think that I've steered a couple of guys to the right path on their careers … like Dino Andino and Andy Fomenko, two guys that actually wound up having a career and making some money at it and turned out to be really nice human beings.

JEFF (MIDGET) SMITH

Born:Michigan, 1951

To San Clemente:1961, age 10

First surfboard ride:Age 13

First surf photo inSun Post:1972.

Duke's benefit:6 p.m. Oct. 27, 204 S. El Camino Real, $5 donation at door.

OC Tavern benefit:7 p.m. Nov. 15, 2369 S. El Camino Real, $10 donation at door.

To donate raffle prizes or help in any way:Call Sean Haggar at 949-525-3784 or e-mail haggar@hobie.com.

From the Orange County Register

Afternoon Coffee

Doug, Linda and I met for coffee in San Juan Capistrano this afternoon. It was great meeting you Doug and Linda! Doug is fairly active in our online support group on behalf of his beautiful wife, Linda. I found out we actually have a lot in common. We all love the Hawaiian Islands. We also went to the same Southern California University in Orange County. So of course, my conspiracy wheels started to turn. Hmmm, I wonder if our university had some sort of asbestos problem and that's why Linda and I had ACC. Pardon my brain. I'm always trying to pinpoint where my cells could have gone wrong. Linda has been cancer-free for seven years now since 2000! We're planning to meet again sometime in the new year so if you are interested please email me! Until we meet again.

Meanwhile Back at the Ranch

Doug, Troy and I met on July 8, 2007, at Doug's ranch in the Inland Empire for our ACC support group meetup. You can't see from this photo but Doug has two gigantic horses standing behind those trees. Doug was kind enough to offer a ride but I was actually quite terrified. This country scenery was a great setting for our ACC support group meeting. Thank you for hosting, Doug and Kathy! Troy, it's always great seeing you.

Pictured above are: Doug (survivor since 2006), me (survivor since 1998) and Troy (survivor since 1999).

Survivors

K, wrote me yesterday, "I saw on your site many obituaries and memorials of others, but are there any other survivors out there? I am looking to see what others have been through, I am looking for hope."

Yes, there are many survivors out there. I suppose I should write about that too. I am always consumed with trying to remember those that have left us that I forget about those who are still with us.

Thank you, K, for writing and asking about the well being of the the survivors of ACC. I am sending thoughts and prayers to you and your friend. Please tell her that we are here.

Debby is a 17-year ACC survivor.

Debby and I first met at the ACC Conference last October.

Margaret and Troy

Margaret is the founder of our ACC Compassion Support Group. She started the group in the name of her father, Carl, who died from Adrenal Cancer almost two years ago. Words can never truly express what she's done and continues to do for all of us.

Troy, along with TGEN, recently produced an exceptional video that talks about his survivorship (two time survivor) and the ATAC research fund which he started. It's amazing what he's done in such a short amount of time. ATAC stands for Advancing Treatments for Adrenocortical Carcinoma.

In addition to Debby, Margaret, and Troy's survivorship, Weston Johnson is hosting an ACC Fundraising Benefit in New York on July 5th. Weston's fiancee, Coni, passed away last year. All you can eat, raffle gifts, and most of all friends and family. And it's in New York. Need I say more?

Who's going to be in the Los Angeles area the weekend of July 8th? We are planning a little gathering to coincide with the New York fundraising event. Perhaps we can meet once a month on a regular basis. Let me know if you are interested by dropping me a note...cureacc at gmail dot com.


Here's a photo of some of us survivors and caregivers who met last fall in Arizona for our first ever Adrenal Cancer Conference:


We missed you, Mr. Dick Beverlin! Actually we missed a lot you that weren't able to make it.

There are many of us seizing life at the reigns. This is just a handful of us that were able to make the trip out to Arizona. But there are so many of us alive and kicking cancer's butt! Hope to see you all soon.

Zachary Prentice

This was posted on You Tube last year. Watching Zach you see his grace and courage as he brought attention to Adrenal Cancer. The next video is a tribute after he passed away shortly after. He was only 21.



God Bless, Zach.

Garry Betty Foundation

Garry Betty

Garry Betty, founder of Earthlink, died in January due to complications from Adrenal Cancer.

Earlier this month, his foundation donated $400,000 to the Adrenal Clinic at the University of Michigan.

November

Originally uploaded by ai pohaku.

It's been so long since I've written that I almost forgot my password to this journal. Excuse me while I re-read my last entry.

Well I did end up meeting with my friends and getting my hair cut back in November. The photo above is the "before" shot.

I have neglected this site for some time and I apologize. Some of you have written to ask about my well-being. I am fine. I reached my 5-year anniversary from my liver recurrence back in February. May 7 of this year marked my 9-year anniversary from my very first bout with cancer. First bout? Let's change that to first time. I was a newcomer back in 1998.

So here I am. One reason I have not written could be that I haven't been active in adrenal cancer advocacy. You know that song Sitting Here in Limbo by Jimmy Cliff? Since my last entry, I would always log on to this journal and type only to delete the entry. I wasn't inspired to post anything..."like a bird ain't got a song." I didn't have any songs to sing to you about.

How are you? I hope always that you are well, my friends.

And here's the after photo...

It's nice to be back.