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.

A Gesture of Love

My friend, Linda, forwarded this video to me today.

On a sidenote, it was also Linda who told me about the wonderful organization, Locks of Love, a couple of years ago. Her daughter, Erin, had cut and donated her hair at a designated salon. Volunteers for Locks of Love hand assemble each piece for children who have lost their own hair because of medical hair loss. It's an amazing gift that only requires your hair.

I'm due for a hair cut on the 18th. My two friends and I have been planning for many weeks for our hair appointment. If it was just me, I would just walk in to the salon the same day I felt like getting a cut. But apparently if you're married with children, you have to plan it. We've been planning a sort of girl's day out since September. So on November 18 we will be meeting for dim sum before going into the salon. I'll trim about one inch off the back. I'd like to donate my hair for the second time but it's not long enough yet. So just a little note to you if you're thinking of cutting your long beautiful hair...please consider locks of love. This has been public service announcement #257. Thank you for listening!

October is that Time

We changed our clocks today for day light savings time. I always forget do we fall back or fall forward one hour? Anyway, October is also Breast Cancer Awareness month. I'd like to remind everyone about the BSE, or breast self-exam. Examining yourself regularly is simple. By the age of 20, women should be checking themselves each month. Komen.org suggests that the best time to examine would be at the end of your period. If you no longer have your period, then do the BSE on the same day of each month. Men, you should not ignore any breast lumps.

Check out komen.org for a step by step how-to video.



I'd like to share a testimonial from my friend Jaime, a four-year breast cancer survivor. Read and also watch her video.

Amazing Grace

Kirby, you will be forever missed.

Oct. 23, 1965 – Sept. 11, 2006

SHELBY — Mr. John Kerby Lathrop, 40, of 105 Cider Drive, died in peace with his family at his bedside on Monday, Sept. 11, 2006.

He was born Oct. 23, 1965, in Florida. He was eight years old when he and his family moved to Franklin. Kerby graduated from Franklin High School in 1984 and continued his studies at Durham Tech. He was a longtime resident of Shelby and a successful and recent owner of North State Dental Lab.

He is survived by his devoted wife, Kris Morrow Lathrop, and their three children, John Keatley, Alex Christine and Jamie Ann; his mother, Dee Vito and husband, Edward, of Shelby; father, John M. Lathrop and wife, Lois, of Franklin; eldest brother, Greg M. Lathrop, wife Judy, and their children of Asheville; twin brother, R. Kerry Lathrop, wife Kimberly and their children of Waynesville; and sister, Amy K. Lathrop of Franklin. He is the beloved son-in-law of Frank and Linda Morrow and Jesse and Barbara Williams of Shelby.

As a member of the Cleveland Community, he met and made many loving friends. He was introduced to the “B.N.O.” boys by his mentor, Joop Bakker and wife, Mary Ann. He was described by many as very artistic and a spiritual and loving father. He was also gifted with a beautiful singing voice and truly loved his church, Mountain Home Primitive Baptist Church, where he was a devout member. He was well attended by the Hospice of Cleveland County.

Memorials: The family has established a college fund with UBS Financial Services. They ask memorial gifts be made to J. Kerby Lathrop Memorial, UBS, 320-1 E. Graham St., Shelby, NC 28150

Computers and A Cure for Cancer

Troy, a fellow two-time ACC survivor, emailed our support group to let us know about CBS news segments on Cancer that aired last week.

In these segments, Katie Couric talked to doctors about the role that computers play in finding a cure for cancer. The computer is now able to analyze the tumor sample data and is able to identify changes in genes in proteins. Drugs can then block that change or reverse that change. This is amazing technology.

A new term I learned: "Biology in silico." Science with the help of silicon, or computers.

In the specific case of one patient, the super computer determined what gene mutation caused his cancer and then determined what therapy would best treat the cancer. The computer analyzed the tumor at warp speed. Two trillion calculations per second!



Watch the videos:

Katie Couric interviews Dr. Barker of the National Cancer Institute

A supercomputer that anaylzes tumors at warp speed!

Three Years Later

on a pilgrimage

I re-read my post from three years ago when I started teaching Bible study for fourth graders. I was so nervous. Since then I've moved up each year with the same group of kids. Those fourth graders are now in seventh grade!

Last week was the first day of class. It was definitely overwhelming. My have they changed. I lost my voice trying to talk over them. The 2nd grade teacher next door complained to the office about our "rowdy" class. There is a considerable difference in the volume and hormones as compared to our neighbors. I let my class socialize a bit since they hadn't seen each other since May. I took their photos individually and as a class. 10 boys and 5 girls. Lord, help us.

Meanwhile back at the university...I'm in my last year in obtaining my teaching credential so that I can teach in the public school system here in California. I dropped off my fingerprints and application in Los Angeles today for a substitute position. That means I could get the call to sub anywhere from K-8 within two weeks! Holy Majoly! I start my student teaching in January. One of my professors suggested that I continue on to get my Master's for the bump in pay stimulation of brain cells. I've seriously thought about it. My interest of thesis would be teaching kids the research and reporting process in the least painful way possible. A thesis on the thesis. Think multi-genre incorporating, photos, artwork, poetry and journals. The kids would own it and be proud of whatever topic they choose to research. I haven't formally declared my change in major.

That was the strong "me" talking. The weak "me" fears about working that hard and then falling flat. I mean I don't have all the energy I used to have. But if I knew that failure wasn't an option...If I could be certain that cancer wouldn't be there to meet me later...So many if's. I have a friend who went to university on a full scholarship only to have Adrenal Cancer take that away. Is it better to have tried than not? Of course I already know the answer.

So part of me just wants to take that credential and run with it. Just give me my own classroom because that I know is my true calling.

Did I mention my grandmother was a teacher? She is my inspiration. She died at a young age from pancreatic cancer.

I stumbled upon her journal a few years ago. I turned it into a blog. Here's a link to my past. In it she talks about bringing my mom home from the hospital soon after her birth. Like me, she's a movie buff. She comments on her favorite films and actors. I love reading her favorite quotes. Here's a link to her blog. How cool is she?!! My grandma has a blog. You rock Lola!

Peace to you Coni

Peace to you dear Coni.

First Annual ACC Symposium

I can't believe what's happening. Troy has been working hard to unite patients, caregivers and the medical and science community.

The wonderful news is that he also managed to gather the commitment of doctors and clinical investigators that have experience with the very rare Adrenal Cortical Cancer. These doctors will be traveling from all over the country to be there. There's a proposed tour of TGEN, q&a and roundtable discussion with the panel. Here's the extraordinary itinerary.

So the big day is Friday, October 20 in Phoenix, Arizona at TGEN. This will be the day that I'll have the pleasure of meeting face-to-face the many friends I've met online and have kept in touch with during the last four years.

The registration deadline is September 15 to confirm hotel rooms. Final registration is October 10.

Register today for our first annual ACC conference and gathering!

Exactly 10 weeks to go...I can't wait to see everyone. Thank you, Troy!

Special thanks to Margaret who is organizing the accomodations.

Thankful

Walking through the courtyard, I chose to sit in the shade to get out of the sweltering sun and rest my worn feet. I had been walking for a few miles along the beach and found myself entering the courtyard of the church across the street.

I heard a muffled voice and looked up to see that the mass inside the church was being broadcast on a loudspeaker overhead in the tree above me.

No one else was in the courtyard except for statue of Mary and of St. Francis feeding the silent birds. There were candles and flowers placed at his feet.

I bowed my head. I prayed for Kerby, Doreen, Olga, Howard, and Michael. I thought about Luis, Cecilia and Fred who died. I prayed for Margaret who lost her father to ACC but continues to support us. I prayed for Zeljko's mom, Anda, who passed away last week.

I am thankful for simple things. For the beautiful garden that surrounds me. For the blue ocean across the street. For finding simple pleasure sitting under this tree. For the sound of the water fountain behind me.

Sitting, Waiting, Wishing

Kim and Jack

Dear Kim,

I read your beautifully written book. I had to put it down at times because of your very vivid detail of your precious journey. Anger came over me after reading your brilliant book because...well you're not here...for the lack of medicine...so many things. With the constantly advancing technology you would think that treatment would change but it doesn't seem the docs are getting anywhere. I've calmed down a bit since and I plan to read your book again. At such a young age you've written with so much wisdom. You are right. Life is right now.

Margaret is putting together an Adrenal Cancer Summit for a meeting in Arizona. She lost her father to ACC last September and continues the fight the battle. Survivors will be meeting for the first time, along with caregivers, and hopefully doctors. We're planning on gathering in October.

Sorry I didn't write sooner.

"Do you remember when we first met? I sure do, it was some time in early September." I remember we would talk about our love of the ocean and of course Jack Johnson, the one and only. We talked about meeting up one day. Until then my dear friend, I'll be sitting, waiting, wishing.

P.S. I'm posting a photo you sent me not too long ago. I love this photo. Hope you don't mind...I added Jack to the collage.

NED

Norris Hospital at USC

NED. My *December CT shows no evidence of disease.

I spent my morning at the Norris Hospital at USC. First I went to see Dr. Quinn to discuss my last two CT's. The nurse took my blood pressure and said it was quite high at first. "Are you nervous?" I really was not. So he took it again and this time it was 145/90. Still above normal but much lower than the first time. The "patchy densities" that were there in my lung found on my **August CT have gotten smaller. Dr. Quinn reviewed the December CT and concluded that it may have been an infection.

He advised another CT in six months and sent me to get bloodwork. Afterward I strolled the unusually quiet campus (it's Martin Luther King day) and walked over to the research library. There's usually no problem perusing the full text of their online medical journals if I have my patient card and I let them know I'm doing research on myself. I'll usually browse the support group's articles and see that Dr. D has found the same article already. Some docs don't like it when the entire article is passed around due to copyrights so I won't post the full text. Just click on the link and see if the article is still there (not sure how long the full text will be up). I don't know what I expect to find when reading the journals. It's just good to know what's happening out there in the small world of Adrenal Cancer. Still no registry on Adult Adrenal Cancer.

*CT on 12/16/05
IMPRESSION: Patchy pleural based densities in the left hemithorax have diminished in size. Fatty infiltration within the liver. Left adrenalectomy and nephrectomy unchanged.

**CT on 8/11/05
IMPRESSION: Patchy densities in the left lower lobe, new since the prior study. This is thought to be due to inflammation or atelectasis. Malignancy, although unlikely, cannot be excluded.

Your Health In a Nutshell

As with any guarded diagnosis, a second, third or fourth opinion may take you to see many doctors. Your portable medical history at a glance will make it easier for your new medical team to gather data so they can assist you faster and get a fuller picture of your cancer journey. Following is a sample.

Aileen C. Carter
Updated: January 2006
DOB: August 3, 1973

Allergies: Sulfa, Penicillin, Iodine

CANCER DIAGNOSIS AND RECOVERY RECORD
Diagnosis: Adrenocortical Carcinoma (ACC)

1998
4/98 - CT discovered mass in left quadrant of abdomen.
5/98 – Surgery to remove mass (11 x 11 x 9 cm, 800 grams). Radical left nephrectomy/adrenalectomy.
Pathology: Adrenocortical Carcinoma

2002
1/02 – Follow-up CT discovered 6 cm mass in right lobe of liver
2/02 – Liver resection to remove partial mass in right lobe. Pathology: Adrenocortical Carcinoma metastasis.
5/02 – Right oophrectomy to remove benign 6 cm mass.

MEDICATION

PRESCRIPTION DRUGS
Prednisone – 8 mg/day
Aspirin – 250 mg/day

CHEMOTHERAPY
Cisplatin = 180mg/4 weeks
VP-16 – 540mg/4weeks

VITAMINS
Vitamin C – 2 to 4 grams/day
Multiminerals – 1 tablet/day

Kidneys Donated

Happy Holidays!

Mary has donated more of her sterling silver kidney beans to benefit the research of Adrenal Cancer.

Get your sterling silver kidney bean pendant and chain free with a $25 donation to the ATAC Fund to advance research and treatment of Adrenal Cancer.

Your contribution is fully tax deductible. You will receive a receipt for tax purposes. Please be sure to check with your employer on matching gifts. Many companies will match your contributions to charitable organizations.

Order today for complimentary holiday wrapping and free shipping.

Thank you Mary for your support, kindness and prayers. Congratulations to you and your family on welcoming your first grandchild. God Bless.

Just in time for Christmas

Pat, a caregiver in our support group, set up a wonderful store on cafepress. Now you can purchase a cozy coffee mug, stylish t-shirt, or even postage stamps with our ACC logos. Shop in the name of ACC! All profits benefit the research and treatment of adrenal cancer.

Thank you, Pat, for your creativity and dedication on this project. Also thanks to Kirby and Troy for designing the logos.

Choose from a palette of colors, sizes up to 2x and a variety of graphic designs. Our pictured pooch is wearing our tiger eyes design. Our popular daisy design is also available.

Save $5 off your purchase of $40 or more -- Use the pomotion code: LEAFS. Offer expires November 30, 2005.

Pink ribbons irk me

pink ribbons irk me everything in the stores are pink everything says buy this and we will donate a part of your money to research buy this eyelash curler buy this lipstick buy this eye brow tweezer buy these socks but how much of it is going to their bottom line why cant adrenal cancer have some money yes i know we may benefit from major cancer research but the cells are totally different i wish american cancer society would donate money for adrenal cancer research they admit they do not october is breast cancer awareness month have you felt yourself lately i hope so i got felt up today by dr quinns assistant monica who dug way deep into my armpits feeling me for lumps and bumps ouch what if all doctors formed a network and shared their acc data too bad for egos i wish there were more hours in a day what would happen if i spent every waking hour writing letters to doctors and pharmaceutical companies and oprah and geraldo would it change anything i remember reading about the breast cancer drug herceptin and how the vp of the pharmaceutical company's mom was diagnosed with breast cancer so he supported the breast drug what if the rare cancer community became militant and more demanding like the aids community and the major cancer community would it be different if men all over the world had adrenal cancer instead of impotence problems then maybe viagra could save some lives things need to change is anyone listening does anyone care probably not but if you Do care please write to the american cancer society and demand more money for adrenal cancer and reference this number in your letter as this is my number for the letter i wrote asking to please spare some money for adrenal cancer email them at emailCenter@email.cancer.org and here is the reference number 2098004-2684725-003.

For Kim

For Kim who loved to surf

27 April 1981~ 1 November 2005

Dr. Quinn, medicine man

I had my date with Dr. Quinn today. Of all the oncologists I've had the honor of meeting, Dr. Kudelka and Dr. Quinn are definitely at the top, if not the best in terms of giving patients hope and encouragement. Dr. Quinn is part Australian and part comedian which make a brilliant combination. He also belongs to the same online support group...as if he had all the time in the world. He has responded to us online whenever we have questions. A few other doctors sit in and respond so that's comforting. Also, when I get my CTs done at USC he emails me the results immediately. The waiting can be excruciating and he understands that. I wish more doctors were like him. During my check-up today, he reviewed my CTs and said that I shouldn't worry about my **August CT report. He needs another CT to compare it against so I will be getting another one in a few weeks. Notice I am in no hurry. My friend asked me why I have to wait so long to get another CT. Well it's not like I'm in a hurry to know if it's bad news. And it's not as if I am in a hurry to get opened up again if it is anything distressing. So the labwork can wait. Thankfully, I have distractions such as work and school to think about. G'day!

**CT on 8/11/05 IMPRESSION: Patchy densities in the left lower lobe, new since the prior study. This is thought to be due to inflammation or atelectasis. Malignancy, although unlikely, cannot be excluded.

Peace to you

For Carl, Steve and Tom

The online acc support group that I belong to consists of both acc patients and doctors and scientists. We lost Carl on September 9. We lost Steve who was both a doctor and acc patient on September 24. Tom passed away on October 8. Please pray for their families. Carl's daughter, Margaret, came up with a brilliant idea. Our original support group didn't feel like a place we could vent our true frustrations because of the fact that doctors and scientists are members too. We understand that doctors don't have the time to filter out our messages of our fears and anxiety. So Margaret started a new group on yahoo where we can freely talk openly about what's in our heart and soul. Email her to join: mader at fuse dot net. Why didn't we do this sooner. Margaret, thank you! And of course, thank you to everyone in the group, especially to Richard Beverlin who founded our ACC support lifeline.

Advancing treatments for adrenal cancer

Troy from our support group started a huge project for ACC. Read about information on the Advancing Treatments for Adrenal Cancer (ATAC). Thank you, Troy, for all your efforts and encouragement. By the way, Troy is a 6+ year survivor and is a 3-surgery veteran of ACC!!!

Wandering

A wanderer is not always lost.

I told my doctor that I was feeling tired and asked her advice about taking a break from my life. She said that nothing was wrong with taking a break so I took her advice and went to Europe for three weeks. I boarded a plane for Spain and planned on a road trip by bus that would start in Seville and end in Lisbon. It was a nice escape from life.Upon returning, my flight was delayed so I missed my appointment with Dr. Quinn. I plan to meet with him eventually. The fall quarter is always overwhelming since school ended back in June and my brain cells were on hiatus since then. I teach a religous class part time. The class consists of a very philosophical bunch of 10 and 11 year olds. Not to brag but there is a waiting list to be in my class of 31 students. Okay so we're understaffed but a handful of my students have been requesting me for the past three years. I teach them to have the faith that I sometimes feel I don't have. We sit in a round table discussion talking about God and life. A comment that I always get is that they like my class because I actually listen and I don't tell them what they should do. I try to make it fun since the subject can be challenging for such a young group. You'd be surprise how smart they are at that age. Those with kids probably already know this. And did I mention that I am one year closer to getting my teaching credential? Ever look back at what you've done and wonder how in the world did I get all that accomplished? Because I don't remember what I did and how I did it but I have been there and done that. And still there is much more to be done. I talked about organizing member web pages and linking them to mine and I apologize for not accomplishing this. My goal was to put a face, or rather faces, to Adrenal Cancer. This is still on my list of things to complete. And again I will get approval from all who sent me their info before making anything final. Well, I am back. I haven't checked my mail in almost a month. My new email is: cureacc at gmail dot com.

Summer daze

Lori Blakely
(June 20, 1985 - May 4, 2005)

The last time I wrote, I asked for healing prayers for a few friends battling ACC. Lori passed away in May. My thoughts have been with her and her family for a long time. Peace be with you, Lori. Read about her short battle with ACC on her web page.I haven't been inspired to write for a while. This month I started a new job...well sort of. I'm still working for the same company but in a new position. Because I didn't teach or attend classes this summer, I accepted a position in the finance department. For a while now I've been paying for my own health insurance out of my pockets. This new job includes health benefits and it didn't take me long to decide on the PPO plan. I will never choose HMO again. I had a bad experience once when I had to see an ACC expert out of state. With PPO you decide on the doctor and hospital. No one else decides for you.

I got a ct scan a few days ago and it revealed stuff that wasn't there the last time. I read the report and it seems there are oddities in my left lung and on the tail of my pancreas. My gp doesn't seem to be worried so I am not. I have more lab work coming up. Also, I have a date with Dr. Quinn at USC in September. I'm still breathing so that's a good sign.If you or someone you know is dealing with Adrenal Cortical Cancer (ACC), please do join the ACC online support group. Email Richard Beverlin to join: beverlin@ix.netcom.com. The group is made up of both patients and caregivers as well as expert doctors. Check out Richard's very informative ACC website. I hope all is well with everyone. Here's to health, peace and sanity! I'll be out of town for the next few weeks soaking up the sun before school starts up again in the fall.Thank you for your continued support, prayers and signed petitions!

Test results

For Lori

Funny how the term "test results" automatically calls to mind lab results and doctor's appointments. I've been asked several times, "Did you get your test results back?" What they were referring to was my CSET exam I took last month as part of the teaching credential. I got my scores today and I passed! After I pass another exam in May, I can start substitute teaching. I just found out that my professor is from Kaneohe. She suggested I be a substitute teacher there during the summer. Hmmm...in Honolulu they pay much less than California. I wouldn't mind subbing there so I'll look into that for next year.

I plan on taking this summer off from school so I can work and also spend time on ACC advocacy. I still have to work on a web page that introduces other ACC survivors along with their personal stories. I intend to look into setting up a non-profit organization. Also, I need to solicit sponsors for a planned kayak or run/walk race to promote funding and awareness.

My healing prayers go out tonight to Lori, her family and her medical team.

Thank you for your continued support, prayers and signed petitions!

Cartwheels

I called my gp the day after my CT and he called back the next day. He called Friday to tell me the great news. He read the lab report to me over the phone, "No evidence of metastatic disease." I thanked him and requested a copy of the lab report. I always ask for a copy via snail mail to add to my collection. And I need to read it myself to make sure he's not leaving anything out. I got the call at the office so after I did a couple cartwheels in my head, I went back to work.

Questions by my 4th grade Sunday school students this weekend: "Miss V, what is Jesus' last name?" "Who made God?" "Do you think the priest would mind if I asked for seconds during communion?"

My students don't enjoy singing and always dread seeing me bring the cd player out. "Why do I have to sing in church?" So I had an idea. I went to the Folk Music Center in Claremont and picked out some instruments that they could rock to. I chose mini-tambourines, castanets, clickers, clackers and other good stuff. It was a small price to pay if I could get them to move those vocal chords and sing beyond my expectations. It was well worth it. They were fighting over the instruments and were crooning to the melody. They weren't in sync but we'll work on that.

I tried kickboxing last week. No, not because of Hillary Swank. I actually had to make up a class since I missed one day of yoga. It's actually very addicting. It felt great to kick and box and grunt, "Hah!" I'm considering enrolling in it next quarter. The quarter is over in two weeks! I take a board exam as part of the teaching credential in March. We have one week off and then we start our first day of the Spring quarter the last week of March. Maybe I should take off to an exotic location before I begin another quarter. India or Greece perhaps? Maybe next year. Actually, I have plans to visit Marion, who lives in the Bay area. I'd also like to visit Lucy and her boys. Hopefully all goes as planned.

Vince's sister, Laura, wrote me a beautiful letter on pretty stationery. I hadn't received a hand-written letter in such a long time. I know Vince is smiling down on her. Congratulations on your upcoming graduation!

The kidney beans are sold out! I'll be ordering more next week.

I have 10 more Lance Armstrong Livestrong bands to give away! Free to the first 10 who email me. Mention the LAF wristband in the subject line and email me: cureacc at gmail dot com.

Please pray for Steve who will be having surgery soon. Also, please pray for Prema who is recuperating from surgery. Thank you!!

Happy birthday to my sister, Jennifer! She is studying to be a pastry chef. This is another reason why I enjoyed the kickboxing class. Every night she brings home new projects after they're graded. And every night I gain about one pound, give or take a few ounces. My favorites are the tarts, madelyns and almond concoctions. She is my favorite sister in the whole wide world! Happy Birthday Love to you each and every day! May all your wishes come true!!

Good things come in threes

It’s been three years that I’ve been cancer free. I have a CT scan in two days and I have a feeling it will be okay. Life is normal about every four months. I don't usually get nervous until I'm actually being scanned. So on Wednesday, as I'm being run through the cancer-detector apparatus, I'll turn to study the lab technician's face to see if anything new has developed since my last CT from four months ago.

Most of my life and since I was about 10 years old, I've kept a journal. I don't make it a habit of reading my journals but writing your thoughts down can be a way of healing. Frustrations are not healthy to keep in. "Better out than in," my urologist once told me. Until recently, I had never read my journal from 2002 dealing about the cancer recurrence. It recounts a time where I lost my strength and balance for the first time in my life and for this reason I have it on a shelf in a box, buried deep in the back of my closet.

When I read it I realized that I’ve changed in some ways but for the most part I’m still the same person. I strongly believe that a person's attitude, whether hopeful or cynical, doesn't change considerably whether in times of distress or harmony. There are times when I don't see the up side of things and I'm kept grounded. I'm very thankful for all that's happened in my life. Sometimes I think that when I talk in that "inspirational mode" that I'm trying to rationalize my cancer survivor experience. But I do feel blessed to see life from my perspective.

It's been raining a lot here in California which is lovely for the Spring flowers. Jackie gave me tulip bulbs and a pretty ceramic planter for my birthday. I planted the bulbs in December and I can't wait until they hatch.

Take a hike

"I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived." ~Henry David Thoreau

Ever feel like hiking into the woods and staying there for an indefinite time? It's just so peaceful there! Right now I just finished hiking up the stairs to the library here at school. I'm busy working on a few projects for different classes. It's my second quarter in the teaching credential program and it's flying by so quickly. So much to do in the short ten weeks of the quarter.

I have several emails to reply to so please know that I haven't forgotten anyone. I continue to receive letters each day inquiring about ACC, along with signed petitions for further funding of ACC research. Thank you.

I am working on a web page on this site that will include photos and personal stories of all those who have experienced ACC so that we can put a face on Adrenal Cancer. This page would also help in letting those newly diagnosed know the types of treatments and medical teams available.

I sent Mary an order for more kidney beans and she sent me the third shipment with a returned check. She continues to donate the kidney beans without accepting a payment from me. I am so touched by her kindness. I continue to sell the sterling silver kidney bean pendants to raise awareness for Adrenal Cancer. Yes, I have them available for those who have inquired. As of today, I have seven remaining. 100% of proceeds are donated to the research of Adrenal Cancer at MD Anderson Cancer Center.

My friend, Dawna, lost her mother to cancer on January 7th. Peace to you, Pat.

Please pray for Lori who is going through this ACC ordeal for the first time. Also, please pray for my friend, Kim, who is recuperating from ACC surgery.

Thank you!

Hear our prayer

I was 11 and in seventh grade at Kawananakoa Intermediate School when Hurricane Iwa arrived on my birthday in 1982. Mrs. Yokota dismissed us early because Iwa was on the way. I walked home not knowing that my dad was on his way to pick me up. There was lack of communication between the school and the families which caused confusion. Many worried parents were on campus looking for their children who had already left. My father later came home with my sister in tow, upset that he couldn’t find me. I remember seeing my tiny dog, Pieffy, struggling against the wind in the backyard. We had a blackout that night. To keep busy, we played card games and checkers by candlelight. When the winds sounded like they were knocking at our door, my family and I scrambled into a closet at the back of the house. We managed to grab hold of Pieffy and bring him in with us.

The recent tsunami tragedy in Asia reminded me of Hawaii, my home away from home. Hawaii has a Tsunami Awareness month each April to commemorate those 159 people who were killed by a tsunami in April 1946. Three years later the Pacific Tsunami Warning Center was established in 1949 on Oahu’s Ewa Beach and provides warnings to most countries in the Pacific Basin. Even then, nothing is certain. There is so much speculation and unanswered questions as to how this tragedy in Asia could have been prevented on December 26.


May we be led to share what we have with those in need. May we be signs of Your compassion in the heart of Your world. Lord, hear our prayer.

Interview for a newspaper

I took an introductory web site class last year with Dr. Westfall at Cal Poly Pomona. He had never taught the intro class before and, due to budget cuts, has never taught the class since. Initially, I had wanted to take the class so I could write about my frustrations with the lack of treatment for ACC. I also wanted to reach others who were going through the same situation. Being diagnosed and feeling you are the only one with a rare cancer is very distressing. Aside from surgery, there is no proven treatment for ACC to keep it from coming back. Maybe if more of us banded together we could change the treatment of ACC.
I will always be grateful for Dr. Westfall’s dedication in getting my story published in the newspaper. He wrote to several people at Cal Poly but I don’t think they were interested. Uyen Mai, a Cal Poly spokesperson, sent the story to Lisa McPheron, an education reporter, at the Daily Bulletin. Lisa emailed me a few days ago about doing a story on me. We met last Wednesday night at a café to talk about my experience with cancer, outreach and support. This morning I woke up with an uneasy feeling. What will be written? Who will read it? I hope people don’t feel pity because that is the very last thing I would ever want. My younger sister called at 5 am this morning saying she bought two copies. I held my breath. She continued to read it and then said, “Oh my God!” I asked, “What?” She answered, “They mention your age, like, ten times.” I'm not that old! It was her way of saying that I worried for nothing.The newspaper has the heading, Web of Hope, along with two photos of me and my students in the classroom. I am very happy with the article. I called Lisa to thank her and even stopped by to drop off a Christmas gift. She declined because of the Bulletin's ethics policy. Thank you to Dr. Westfall, Uyen, Lisa and Therese.


Read the web article here. Happy Holidays!

I heart Lance

I ordered and received my livestrong wristband from the Lance Armstrong Foundation in the mail today! Proceeds benefit people around the world living with cancer.

I have a few to give away to the first 10 people who email me. Mention the LAF wristband in the subject line and email me: cureacc at gmail dot com

'Tis the season to give the gift of life

¤ Donate your hair to young children at LocksofLove.org Help restore self-esteem and confidence by helping these young kids face their peers and the world.

¤ Donate blood today. Find a blood drive right now! GiveLife.org Donating blood is a simple process that saves more than four million American lives each year. Blood is needed every three seconds. One out of three needs donated blood in their lifetime. One out of 10 hospital patients needs a transfusion. Blood is always needed for treatment of accident victims, cancer patients, hemophiliacs and surgery patients. There is no subsititute for blood.

¤ Renewing your driver's license soon? Transplantation saves lives, but only if you help. All you need to do is say Yes! to organ and tissue donation on your donor card and/or driver's license, sign up on your state’s donor registry (if there is one), and discuss your decision with your family. Each day about 70 people receive an organ transplant, but another 16 people on the waiting list die because not enough organs are available. Think about this the next time you renew your driver's license. Become an organ donor today. OrganDonor.gov

Alison's story

Ellen Auerbach wrote me about her beautiful daughter, Alison, who passed away last year after being diagnosed with ACC, "My daughter Alison was diagnosed with ACC in her seventh month of pregnancy. For her it was too advanced when it was found and she had no chance. On September 5, 2003 they did a C section and my granddaughter Rebecca was born. She was only 3 pounds 9 oz and very sick at birth. Alison only saw her daughter 2 times and then we had her moved from Albany Med Hospital in Albany NY to Sloan Kettering in NYC. There she was treated by Doctor Deborah Schrag. She was very weak from the surgery and her body could not fight the cancer or the infection from the c section. Alison died on September 21,2003 two days before her 29th birthday. In her case they feel the hormones from pregnancy made the cancer grow very quickly. In August 2003 she was scuba diving and swimming and then she began to feel very weak and could not eat. We too were told that this was a one in a million cancer. Rebecca, my granddaughter is doing wonderfully. She spent the first 3 months of her life in the NICU at Albany Med. Then came home on oxygen. She is a fighter like her mother and our miracle baby. We were all and still are devastated by what happened. Alison was a wonderful human being and similar to you she enjoyed life and loved people. I would love to help you to inform people about ACC and I will certainly sign your petition. I hope you are doing okay. My thoughts are with you."

MOHONASEN MOURNS TEACHER, from the Daily Gazette

Binghamton U Athletics Press Release

To read more about Alison, visit her web page http://alisonauerbach-barr.org/

Seize the Day

My mother's mom, my grandmother, Marcela, died due to pancreatic cancer in 1972. My aunt Aida also died to pancreatic cancer just two years ago. The list goes on with friends and other family members who continue to fight different types of cancer and my heart goes out to everyone. October is Breast Cancer Awareness Month and right now would be a good time to examine your beautiful self, especially your breasts. If you don't already do a regular breast self-examination (BRE), start doing it each month. So seize today and seize your breasts!


Earlier Detection Methods from y-me.org:
Get a routine mammogram. Y-ME, a National Breast Cancer Organization recommends that women begin annual mammography screening at age 40. Women under 40 with either a family history of breast cancer or other concerns about their personal risk should consult a medical professional about when to begin mammography.
See your medical professional on a regular basis. A clinical breast examination should be part of your routine checkup. Beginning at age 20 women should have a clinical breast exam every 2 to 3 years. Women age 40 and older should have one every year.
Perform breast self-examination once a month. If you find something that you know is unusual for you, have a doctor check it out. A LUMP YOU FIND SHOULD NEVER BE IGNORED.

Photos contributed by Tito Freddie and Lola Mitreng. Layout designed by Chino Express Printing & Graphics.

Relay for Life

I am so glad that I did the relay. The relay was held over a 24-hour period on August 28-29 with team members alternating laps, ensuring that one of them always stays on course. It opened with a survivor lap and ended with a beautiful luminaria ceremony where candles are lit for those who have died or those who those who continue to fight the cancer battle. It was great working with others in raising funds for the American Cancer Society.

I was able to raise $428 and I got a free shirt. My cousin, Ruth, and I signed up for the 12:30 am to 2:30 am shift. Our grandmother and aunt lost their battle to pancreatic cancer. Ruth and I (see above photo) were part of the group that walked the 1,000th lap! It was a memorable experience and fun challenge as we walked the track by candlelight early Sunday morning. To all my sponsors: I am so very grateful for your support and well wishes!

2nd annual Cure ACC! raffle raises $400

Thank you to all those that participated in the 2nd annual raffle to raise funds and awareness for treatment of the rare Adrenal Cortical Carcinoma. A special thank you to Dawna, Katherine, and Jennifer for donating the raffle prizes!

Drum roll please...The winners: Sonya ~ Sting tickets, Leni ~ Borders card, May ~ Disney passports, John ~ Starbucks card, Jeannie/Tina ~ jewelry, Jinky ~ Chris Isaak cd, Geni/Mark ~ Sarah MacLachlan cd. 100% of proceeds will be donated to the MD Anderson Adrenal Cancer Research Fund at the University of Texas.

American Cancer Society Relay for Life

Sponsors wanted. I was hesitant to join this 24-hour event that my employer is sponsoring on August 28th in the City of Chino. My co-workers don't know that I'm a cancer survivor and because I'm fairly new at this job I don't exactly like to announce that I am. Yesterday, I received an email from the Finance Director that she would sponsor anyone in our department that would be walking the relay. She's donating $10 to the American Cancer Society for each of us so I made up my mind to do it. It starts at 9 am on Saturday the 28th and it's non-stop walking or running relay until the following morning for 24 hours! One member of our team will always be on the track.

Let's always remember those who have passed and those survivors who continue to fight the battle with cancer.

I believe that one day there will be a cure. How would you like to sponsor me in my first Relay for Life? My goal is to collect $5.00 each from friends and family.

If you would be interested in being my sponsor, please make check for $5.00 payable to AMERICAN CANCER SOCIETY and mail to Cure Adrenal Cancer!, PO Box 604, Chino Hills, CA 91709-0021. Donations are due this Sunday, August 22. More information can be found on the ACS website: Relay for Life.

Summer is almost here! How does your favorite beach rate?

"Protect yourself: Most people won't get sick from swimming in polluted waters. But children, the elderly, and people with a chronic illness should be careful. Swim in areas with good water circulation rather than in protected inlets, don't put your head under, and stay out of the ocean for up to 72 hours after a storm." ~ from organicstyle.comThe latest issue of organicstyle.com ranks the cleanest American beaches: Cape Hatteras in North Carolina and Hana in Maui.

Check out or epa.gov/waterscience/beaches or surfrider.org to read about your favorite beach.

Second annual CURE ACC! raffle deadline exteded

Due to popular demand, the deadline for our second annual raffle drawing to win cool stuff for a very cool cause has been extended. 100% of proceeds will be donated to MD Anderson Cancer Center at the University of Texas. Your donation is tax deductible.Enter by August 21st to put your name in the draw for a pair of Sting concert tickets, Starbucks and Borders Books gift cards, passports to Disneyland, music memorabilia and hand crafted jewelry! Enter today by visiting: http://www.followingthesun.org/raffle.html

How toxic is your neighborhood?

Find out now by going to scorecard.org and entering your zipcode. Exposure to toxins and pollutants increases the possibilities of respiratory problems, cancer and other illnesses.

Over the river and through the woods

Drove to Sequoia National Park for the three-day holiday. Hiked up a mountain, through streams and snow to Pear Lake with Jackie, Tracee, Mark, and Shannon. Camped near the edge of a rushing waterfall at Lodgepole (campsite #127! is the one to book). Almost gave up on Pear Lake because of the extreme elevation but so glad we made it! Met some friends along the way.

Free subscription to Cure magazine

Cure magazine and its website is a wealth of information for both caregivers, survivors and anyone interested in the latest technology for health, cancer and treatments. They offer a free subscription and can also be read online. Here's just a sample of what they offer: Ground-breaking medicine, legal resource and caregiver tips. The "toolbox" page lists links and references to support groups and education categorized by tumor type. I enjoy the Reader's Forum which is a one page personal essay written by a different cancer survivor each month. Get your free subscription today! www.curetoday.com

Books for kids who have a parent dealing with cancer

ChemoAngels.com gives a comprehensive list of kid's books. You may want to read to your children to help them understand your cancer world. I read a few and recommend Promises by Elisabeth Winthrop. I didn't think that Good Luck, Mrs. K by Louise Borden talked about cancer at all. I was surprised that my local library actually carried a few of these titles. For a variety of books dealing with cancer click on www.chemoangels.com.

Kids and their parents who have cancer

For young children: www.kidskonnected.org and www.kidscope.org offers a variety of support services free to children ages 3-18.

For older kids, when someone in your family has cancer: www.cancer.gov.

Second Annual CURE ACC! Raffle

Last summer's raffle drawing to win Norah Jones concert tickets raised $1,150 for the ACC research fund at the University of Texas MD Anderson Cancer Center. MD Anderson Cancer Center at the University of Texas is ranked #1 in the United States for cancer research and education. 100% of raffle proceeds will be donated to MD Anderson's ACC Research Fund. Please tell a friend! The purpose of this raffle is to educate and make an impact on raising funds for research on the rare cancer, Adrenal Cortical Carcinoma (ACC). Prizes include Disneyland passes, Sting concert tickets, autographed items, jewelry, and gift cards to Borders or Starbucks. $10 gets your name in the drawing. Enter today.

Yogurt helps keep the doctor away

The healthy bacteria in yogurt helps cleanse your colon and even lowers the risk of colon cancer. Studies show that eating two cups a day can boost your immunity and lower cholesterol. The best kind of yogurt contains live and active cultures. Forget about yogurt that is "heat treated." All ages can benefit from yogurt. If you're interested in reading on yogurt medical research, here they are -->> Yogurt Reports

Know your doctor and your rights

There is a shortage of good physicians. Examine your doctor's background. How long have they been practicing medicine? Where and when did they graduate? Have they ever been disciplined or sued for malpractice? Are they licensed to practice in your state? Find your physician and read about your consumer rights by clicking here--> stat!

Happy Anniversary

Today is my two year mark for being supposedly cancer-free. Supposedly because I've been told that they "got it all" before but then it showed up again over three years later. Where was I two years ago in my journey? Where am I today? Where am I going tomorrow? I feel I've accomplished a lot and at the same time I feel that there is much more to do. Thank you for your continued support for STOP ADRENAL CANCER! Each week I continue to receive signed petitions via email and snail mail. I plan to collect more petitions in the coming months and will be mailing them out, informing legislators, pharmaceutical companies, along with news organizations.

Peace to you, Fred

Very sad news today. We lost another member in our ACC support group. Diagnosed with ACC in 1989, Fred defied statistics and his doctors' prognosis when told he had only a few months to live. He authored the book, Finding Hope When the Doctors Say There is None, which tells of his life-changing experience with ACC. He continues to inspire many. Peace to you, Fred.

If you would like to read Fred's book, Finding Hope, email me and I'll loan it to you. Or you can order on Amazon.com by clicking here -->>Read Finding Hope today. This book is filled with a wealth of knowledge and inspiration.

Big Bear cabing raffle winner!!!

Congratulations! Nicole of Northridge is the lucky winner of the coveted 3-day cabin vacation in Big Bear. The winner will enjoy Big Bear's winter wonderland from January 16-18. Thank you, Jinky and Dave, for your cabin contribution. Thank you to all who signed the petition to STOP ADRENAL CANCER!

If you haven't signed the petition, do it now by --> clicking here.

Under the Hawaiian sun

Take the day off! That's just what we did as we chased the sun in Hawaii. I loved waking up to the rain hitting the tin roof of our cabin. We kayaked and spent our first day in the emergency room because Jackie stepped on a sea urchin! That did not stop May, Jackie, Carli and I from hiking in Pololu, Waipio or Mauna Kea. One minute we're playing in snow on Mauna Kea (white mountain). The next minute we're exploring old lava flows, such as the Holei Arch, along the coast. I got camera happy after spotting honu basking on the beach. Out of 20 pictures, only one clearly shows the honu swimming (see below). I enjoyed every minute in Hawaii nei. A hui hou (until we meet again). It is now time to adjust my watch to the REAL WORLD.


I spent the last few days in Oahu relaxing from my Big Island expedition. On Saturday Waimea beach was closed due to the dangerous 30-feet waves. All photos below are taken on the North Shore. Unfortunately, I didn't get to see all my friends and didn't feel I had enough time with those I did see.

Happy new year!

Gone fishing...in Hawaii. For the new year, my friends and I plan to chase the sun on the Big Island. If I don't come back, don't look for me.

Big Bear cabin raffle update

I've been neglecting my page! I had to put the Big Bear raffle on hold due to the forest fire that started in October. The new cabin dates for the lucky winner: January 16-18, 2004. The Big Bear mountains have been packed with snow and skiers lately so it will definitely be a White Christmas for some. I'll be announcing the winner soon.

Student and Teacher

I enjoyed my return to school as a student. I just realized that I had a few things in common with my professors. I got an 11 out of 10 on my last project for my web design class. I didn't know that was possible. My instructor, Dr. Westfall, is a fellow cancer-survivor (he had colon cancer) and supports my web page ideas and even signed my guestbook. Dr. Aaron, my literature prof, is a fellow ukulele player and is a great lit professor. I enjoyed my classes immensely. I continue to teach fourth grade Bible study. I didn't think I would last because the kids were falling asleep on my first day. The kids will tell me what they like to do. They love to act so we act out our prayers instead of reading them. One student even wrote a script and gave me a part to play. Their favorite game is Jesus Jeopardy where they hum the game show tune and answer in the form of a question. They made my day when they asked if they could be in my class next year for fifth grade.

Win a shopping spree and weekend in Big Bear

It's time again for another raffle contest. The prize is a cabin vacation in Big Bear and shopping spree. Fishing, boating, off-roading, wild-life viewing, mountain biking and hiking are all possible for your weekend at the lake. If your name is chosen, your cabin holiday is reserved for November 7-9, 2003. The winner will also receive a $20 gift certificate to Von's grocery store, conveniently located in Big Bear. Spread the word! Tell your friends, family and co-workers. No purchase is necessary. Thank you to Jinky and David for contributing your home.

Peace to you Cindy

It's a girl!

It's official. Thanks to Jackie, I have adopted two babies, Lani and Kai, both girls and both adorable. I am adjusting to their early morning feedings as they are only six weeks old and cry for milk often. Their father is a dachshund (tiny weiner dog) and their mother is a chow chow/cocker spaniel mix. Imagine that!

Peace to you Cecilia

Teacher and Student

I volunteered to teach Bible study at church. I'll be teaching Saturday morning to fourth graders and they'll end up hating me for taking them away from cartoons, sleeping in and whatever else fourth graders do. I'll have to remember what it was like to be that age so we can better relate. I'm nervous because I don't feel that confident about the Bible and yet I'm teaching them. I pray for knowledge and confidence of the Bible. I'm more excited than nervous. Sunday school starts in October. My fall semester as a student starts next month as I am going back to school this fall to take a web design class.

Peace to you Chrisie

16-AUG-2003 PEACE TO YOU CHRISIE

Road Trip to South Dakota

Jackie and I drove to South Dakota and back to California in 9 days. We managed to drive through Nevada, Utah, Idaho, Wyoming, Montana, South Dakota, and Colorado. We rented a Ford Escape SUV, packed our sleeping bags, a tent, food supplies, and firewood. We didn't make any reservations and decided to drive wherever the day would take us. We camped out under a million stars and explored the National Parks and Monuments: Zion, Bryce Canyon, Yellowstone, Grand Tetons, Little Bighorn, Devil's Tower, Mt. Rushmore, and Arches National Park. The highlight of the trip was the many wildlife roaming in Yellowstone: Buffalo, deer, elk, moose and pronghorn. Other highlights: A highway with no one on it (U2). Dodging birds that might fly into the truck's grill on the drive from Montana to South Dakota. Rolling hills and endless dusty roads leading to no where. A word of advice: You should never plan a road trip around the time of the Sturgis bike rally if you don't have reservations two years in advance. The town of Sturgis in South Dakota has a population of about 5,000. The rally held once a year draws in about 25,000 bikers! More...

Another Adrenal Cancer Raffle in the works

The ideas for another raffle keep pouring in. Within the last week my friends have offered amazing contributions such as a beautiful cabin retreat in Big Bear for the weekend, a signed music cd and photo by Chris Isaak (Dawna), Disneyland tickets (Jen), and original jewelry designs (Katherine).

Adrenal Cancer Raffle raised $1,150!!!

The Norah Jones concert tickets raffle was a success. A special thank you to all who joined and contributed to an amazing cause: CURE ADRENAL CANCER! Congratulations to Diane of Chino for being the lucky winner of the coveted Norah Jones concert tickets. Runner up winners had the opportunity of winning a Norah Jones dvd along with cd's by a variety of artists. Thank you to Star 98.7 FM for contributing these items. $1,150 was raised for the ADRENAL CORTICAL CANCER RESEARCH FUND at the University of Texas MD Anderson Cancer Center. It was a day of feasting (b.b.s. style) and singing-along with the always entertaining karaoke machine. Thank you to Tita Sonya and Carli for passing the petition around. It was great to see friends I hadn't seen in several years. Thanks to everyone for making the party a success.

Affect Public Policy

Please sign a petition to beg President Bush and other legislators to fund adrenal cancer research. It only takes a few seconds. Help spread the word by forwarding to friends.

Peace to you Anita

What inspires you?

I called my former kumu, Maile, and asked her if I could join her hula halau and she said yes! I started in her halau when she still had a dance studio. My old class still meets every Thursday nights at her home. I can't wait to see everyone. I've put off a lot of things during the past year, having no motivation to do anything. I decided that if my one year CT scan was clear then I would pick up where I left off. I have this list of things to do in life. Hula is on that list. I haven't danced in over a year and I miss it terribly. I am so excited!

Norah Jones Website

Thank you to www.norahjones.info for posting my raffle on their site! Check out their amazing site (no, I am not biased) on the latest information on the soulful Miss Norah Jones. Her music and voice inspire me.

Test Results

Day two in Minnesota: Met with my wonderful oncologist and discussed results. All good news. Future CT scans will now include pre-medication the night prior and day of the scan. Seems I've developed a new allergy to iodine/contrast. Instead of every three months, CT scans are now to be done every 6 months or sooner depending on how I feel.

Return to Mayo

Flew to the Mayo Clinic in Rochester, MN, for routine blood work, CT, and oncology consult. Back at home, I visit the doctor every three months. I flew to Rochester to get reassurance that everything is okay from the same medical team that performed my liver resection a year ago. I finished the tests early so my sister and I drove about 2 hours to the Effigy Mounds Park in Iowa. We drove alongside an Amish woman riding her horse and carriage. The sun setting behind the prairies along Laura Ingalls Wilder highway provided us with an amazing drive back to Minnesota. Thanks to my sister who took time off from work to be by my side in Minnesota.

Peace to you Kenneth

Peace to you Steve

Dear Lisa

I lost a friend to ADRENAL CANCER today, one day after mother's day. She was a wonderful mother. She left behind a great husband and beautiful kids. I never expected her to leave so soon. I hadn't talked to her for a few months. I wish now I would have greeted her on Mother's Day. I'm sorry Lisa. May you rest in peace. I will keep you and your family in my prayers.


Nightingale
Sing us a song
Of a love that once belonged
Nightingale
Tell me your tale
Was your journey far too long?

Does it seem like I'm looking for an answer
To a question I can't ask
I don't know which way the feather falls
Or if I should blow it to the left

All the voices that are spinnin' around me
Trying to tell me what to say
Can I fly right behind you
And you can take me away

~Norah Jones

Peace to you Jorah

We lost another member from my Adrenal Cancer support group. I didn't know Jorah too well and I am so very sorry I did not have the opportunity to do so. Peace be with you and your family, dear Jorah.

Sign my guest book!

The guestbook is now up. Please sign my guest book! I emailed my support group about my page. They immediately wrote back with praise and support. Their opinions mean everything and this really made my day.

Business Cards

Thank you Tita Sonya for your creative work on my business card logo and layout. As always you are there to support me with your fabulous ideas.

Locks of Love

I donated 10 inches of my hair to locksoflove.org. Not all hair salons donate hair so I made an appointment with Doreen at Jojo's in Whittier who cut my hair for free. Ask your hair stylist if they participate in the Locks of Love program. It's simple for the hair salon to join the network. Most importantly, it helps children under 18 who are in need of hair pieces.

On the third day he rose

Happy Easter! Lord, I am not worthy to receive you but only say the word and I shall be healed. Do I hear an AMEN?!

Buy a kidney bean

Mary Kiernan, a jeweler from beautiful New York has decided to contribute her sterling silver kidney bean pendants to support the cure for adrenal cancer. A $25 donation to the Adrenal Cancer Research Fund gets you this beautiful pendant and chain. Order them while supplies last.

Thank you thank you thank you Mary!

Norah Jones Raffle

Michelle Findlay of Norah Jones' management team is kindly donating an autographed cd and sultry photo of the one and only Norah Jones to the CURE ADRENAL CANCER RAFFLE. Thank you Ms. Findlay! Enter the raffle today. All money is donated to the University of Texas MD Anderson Cancer Center, ranked #1 cancer hospital by US News and World Report.

Web Page Update

I forwarded this web page to my dear friends and family asking for their support in passing the word on adrenal cancer. I was amazed at the responses. I received email from people I had never met offering their prayers. Another response came from my cousin who has a kidney illness I never knew about but decided to tell me because he had read my page. More than once I got mail saying it helped someone they knew going through a similar situation. Thank you to everyone who took the time to write and also to those who passed the page on.

Yo soy vegetariano

I became a vegetarian after my last surgery last year. Although not a true vegan since I still eat eggs. Giving up meat today for Ash Wedesday is not much of a sacrifice so I will be giving up coffee and chocolate, for 40 days. I used to work with someone who fasted every Monday for health and religious reasons. She would sit with us while we ate and she would sip her tea. I read from one of Dr. Andrew Weil's books that it's actually healthy to fast each week. It cleanses the body. I don't know if I could do that but it would be great to cleanse my innards. Since last year I've been reading a lot of cancer books and found out that meat makes the liver work harder than it has to. Since I had a part of my liver removed I hope to lighten the work load down there. They say the liver regenerates and it sure did. The right side (the side they carved out) is now bigger than the left side!

Pulling my hair

I need to get my page together. I've been pulling my hair out one by one because I'm having a problem organizing my thoughts. The problem is that I don't know exactly what I want to convey. I pray that the ideas continue to flow. Sooner or later I have to finish this. I have given myself a deadline for St. Patrick's Day or when I go bald, whichever comes first.

Peace to you Diane

Diane from my Adrenal Cancer support group died two days ago. Dear Diane, you're in my thoughts and prayers.

I won tickets to see Norah Jones at the Greek!

I won tickets on Star 98.7 FM to see Norah in concert at the Greek in LA!!! A few minutes after I hung up with the dj, I got this idea that I should use the tickets to raise money to CURE ADRENAL CANCER. I wonder if people would donate to this cause.

Three Little Birds

This is the song I hum in my head while being scanned. I do this to overcome my claustrophobia in radiology. Written by Bob Marley, the birds sing that everything is going to be alright. My November CT went okay. The shadow on my remaining kidney bothers me but the doctor doesn't seemed worried. Blood and urine tests are okay. I now remind the radiologist technician that I only have one kidney left and ask could he please inject the lowest possible dose of the contrast. He said he would but I wonder if he really does. I get very nervous right before each CT scan and this nervousness always prompts me to write letters to more doctors. No new news. I plan to write them annually reminding them of this rare cancer population, specifically asking them about advances in ADRENAL CANCER medicine. Back in November I worked on the web page. I haven't been working on it as much as I should. Not at all.

Archives: I'll be archiving this day to day journal soon, by year category. Hopefully I can do this by the end of the year. I'm taking a web design class so maybe I'll have insight to a better improved web page. Currently thinking of my own domain name instead of this geocities page. Any ideas? cureacc.com adrenalgirl.com stillbreathing.com

Email me: cureacc at gmail dot com

Butterflies

I have my ct scan tomorrow. I'm more nervous than usual because I feel unusual short pains in the abdomen. My urine test on October 16 showed protein present. The doc has called twice to ask why it is taking so long for me to get the CT scan he prescribed. I explained to him that my birthday is coming up and I don't want to know any bad news until after that.

President George Dubya

President George W. Bush signed a cancer bill on November 7, 2002 for rare diseases. This is great news although I don't see Adrenal Cancer listed as a rare disease on NORD’s (National Organization for Rare Diseases) database. I am very behind in writing to my politicians in getting the word out on Adrenal Cancer. I want my web page to focus on cancer legislation but I don't know where to begin.

Michigan

I visited a my very good friend, May, who lives in Michigan. Partly a business trip, I also visited the Adrenal Clinic at the University of Michigan to find out what type of current treatments is being used for Adrenal Cancer. The doctor seemed bored and uninterested. He said I should not be on the wait-and-see plan and instead should be on mitotane. I was hoping to talk about anything other than mitotane. The only thing worthy of this doctor's visit is that I made two new friends in the waiting room.

Peace to you Judi

Judi in my support group died. I didn't know her that well but I hope she's at peace.

In the damn hospital again

Currently recovering from laparoscopy to remove the right ovary and another 6 cm tumor. The tumor was benign. No regrets. I had to act fast as I thought this thing was getting aggressive on me.

April - May 2002 is a blur. I must have visited at least five doctors in one week. I just had to make sure. In April I was told that they found another tumor surrounding my right ovary. I wrote to a few doctors and finally found Dr. Kudelka at MD Anderson.

I flew to Houston to meet with him. He confirmed that I needed to have the tumor removed, along with the ovary. This consultation was well worth the trip. I asked him if he knew other patients with ACC.

He put me in contact with Richard Beverlin, whose wife was a patient. I called Richard as soon as I got back to my hotel room. We spoke for a long time. He told me of his online ACC support group. I can't wait to join.

Happy Birthday, Jen!

Playing in the snow

My folks flew back to California and Jen is here with me. For her birthday, she wheeled me to the bookstore. Their book store is actually an old theater renovated into a bookstore. We ate at Red Lobster for the 100th time. It's the only restaurant attached to our hotel via skyway. No need to exit the building. Enjoying the snow. It's beautiful here, in Rochester, Minnesota. Happy Birthday, Jen!We'll be leaving for Casa California soon. Can't wait to see the folks.