Keep In Touch

.

I"ve decided to continue online journaling on Wordpress. Please keep in touch with me here: http://followingthesun.wordpress.com/

Currently, I'm still working on adding links and other good stuff on Wordpress.

I've mentioned before how writing in my journal has gotten me through so much during the past few years. If you would like an online journal, I recommend Wordpress or Blogger. It's fairly simple to sign up and it's free. Or let me know and I'll set one up for you. Then we can link to each other and keep in touch!

Take care my friends.

Good Things

I spent most of the morning in Radiology today, prepping and receiving radiation from the ct scan imaging machine, or from what i call the x-ray robot. I just read on the FDA website that the robot programmed to administer one ct scan is actually giving off radiation that is equivalent of 500 x-rays. AND the period equivalent to this morning's procedure is actually the same as receiving natural radiation within 3.3 years time.  AND that for the last ten years I've been going about four times a year to get zapped.  Basically, the robot that has been responsible in monitoring new tumor recurrence can and is probably creating the possibility of recurrence.

It's been six years since the last recurrence (in my liver) so I'll talk to my oncologist, Dr. Quinn, about going in once a year. Now I'm curious to hear what his thoughts are on this.

Did I mention I need to be pre-medicated prior to the scan? Yes, I developed an allergy to the iodine a few years ago. Too much iodine being filtered through my one remaining kidney could be the cause. So now Dr. Rhodes prescribes prednisone and benadryl which is what most people would take for any allergic reaction. Anyone else develop an allergic reaction to iodine? I wonder if it's common? I mean after 10 years, the body will hate getting injected with this stuff eventually.

My sister (Thanks, Jen!) usually picks up the barium the night prior to the procedure so I can take the delicious juice at home and then walk in to radiology at my scheduled scan time. Otherwise, I have to check in two hours prior and sit in the lobby sipping that delicious chalky stuff. Today it tasted orange-flavored, which is a slight improvement.

After my scan, I walked out of the hospital and ran into Dr. Weinberg, my amazing and very skilled surgeon who removed my tumor the first time in 1998. I hadn't seen him in eight years! We've kept in touch by mail. I usually mail him and his wonderful staff an annual Holiday card. I'll always be forever grateful for what he did as a surgeon and gp. Back when we found out that Adrenal Cancer was rare, he would confide that he was meeting with several doctors at UCI and at St. Jude about my condition because it was so rare. I was getting impatient because I didn't know what it was and wondered why the surgery wasn't being scheduled sooner. Before and after surgery, I would call him with a list of questions, and he would always call me back and answer them. About one week after surgery, this orange fluid was oozing out from between the staples in my abdomen. I called him and he said, "My professor in med school once told me, 'Better out than in.'"

At about 6 pm tonight, Dr. Rhodes called. My heart stopped and I sat down because he has never called the same day of the scan. If he was calling so quickly after the scan then something new must have appeared on the ct scan. The great news is that he was calling to say that everything looked good except for a new spot in the gall bladder, possibly a gall stone. He said he wanted me to know the news today so I could enjoy my weekend! Thank you, Dr. Rhodes!!! After talking to him, I started jumping up and down like a little kid.

First I see Dr.Weinberg, then Dr. Rhodes calls the same day of my scan to tell me that the scan is negative for tumor activity. All good news. To add to this, I heard from a friend today who I hadn't heard from in a long time.

The pessimist in me is wondering what bad thing is lurking just around the corner. Today was just too good to be true.

Online Adrenal Cancer Support Group

Hello, friends and family!

Please join our online ACC support group.

This group was formed by Margaret Mader and Troy Richards to create a forum to offer emotional and spiritual support to victims of ACC and their loved ones. Members can ask questions and post comments regarding the treatment of ACC and it's emotional and psychological affects.

To join, please visit this link and click on JOIN THIS GROUP. If you can't view the link, copy and paste this in your browser: http://health.groups.yahoo.com/group/ACCompassion/

And if you need help, please email me: cureacc [at] gmail dot com.

I don't know where I'd be without all of them. Take care!

The Doctor Is In

Tonight I'm currently reading Dr. Bob's blog entry which mentions adrenal cancer. Dr. Bob is a physician and blogger who writes about his thoughts on medicine, religion, politics, pets, & passion in life. I never knew a doctor could be so inspiring.

ACC Conference Next Week

Crossed two items off my list of things to do before I leave for Michigan next weekend:


Print copies of the ACC conference schedule.

Check the weather in Ann Arbor during the conference. The temperature will be in the low 40's, about 30 degrees colder than Los Angeles!

Tita Linda

My aunt Linda passed away on Friday, February 22. My cousin, Trixie, was finally granted permission by the U.S. embassy to attend her mother's funeral which will be held tomorrow in Illinois. My prayers are with aunt Linda, my uncle Franklin, cousins Trixie, Mikki and Jay. Peace to you all.

Healing Prayers for my Aunt

Trixie and me (in brown)

While on vacation in the Philippines, I was able to meet with a lot of my family who I hadn't seen in 26 years! My cousin, Trixie, is trying to visit the U.S. so she can be with her mother (my aunt) in Chicago. Her mother was recently diagnosed with lung cancer and has been undergoing chemotherapy. It's not easy to come to the U.S. and I am so sad to hear that the U.S. embassy denied her request to take care of her mother temporarily.

Trixie would be leaving her husband and children behind while she stayed in the U.S. so if anyone knows how she can stay here temporarily to see her mother, please let me know.

Please keep my Tita Linda in your thoughts and prayers.

Thank you!

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.

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