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!