About Me

www.followingthesun.org About Me I Hawaii Hello. My name is Arlyn and I am a two-time cancer survivor. I wish this web page could be solely about my interests in travel, photography, music, dance and other great passions. Instead it is about a passion that I live, eat, breathe, sleep and unconsciously think about every day. Cancer is my passion and finding a cure is my lifetime resolution. I used to live on a tiny island in Hawaii. Living there and being that close to the sea and sand was a good remedy for a restless soul. In 2002, I was living in Hawaii when the cancer had recurred. I recuperated from surgery in California where my parents live and have remained here ever since. I know I'll return someday to the peaceful Hawaiian sea. California isn't so bad. Although the beaches aren't walking distance, I can drive to the beaches and hike the nearby mountains. Week-long road trips are now possible. If you know anyone who may be going through cancer for the first time, please email me cureacc at gmail dot com. E HO MAI IA'U KA MALUHIA [Hawaiian for grant us peace] MY INITIAL DIAGNOSIS In 1998 I was 27 years old when diagnosed with adrenal cortical carcinoma (ACC). After complaining of flu-like symptoms, a tender abdomen and a 104 degree fever I went to the doctor who sent me to have blood and urine tests. These tests showed a very high white blood cell count, a signal of an infection. A CT scan showed a massive 17 cm tumor. After surgery to remove the football-sized tumor, kidney, adrenal gland, lymph nodes, and a rib, I was diagnosed with having this thing called cancer. Because of the size of the tumor, I was first diagnosed with stage two ACC. Pathology reports showed the tumor to be nonfunctioning and malignant. IT CAME BACK In 2002 I had my first recurrence. I had almost made it to my four year anniversary of being cancer-free when a routine CT scan showed a new 6 cm mass in my liver. I went to the Mayo Clinic to remove part of my liver. As with the first surgery, the tumor was totally removed and encapsulated. Pathology reports confirmed that this was a metastasis, or spread, from the cancer in 1998. This recurrence placed my cancer at stage four. A few months after my liver resection, I was told I had a new 6 cm tumor. Laparoscopy to remove my right ovary proved that the tumor was benign. FRUSTRATION There is no cure for this rare cancer. Doctors differ in their follow-up treatment. There is no proven effective adjuvant chemotherapy to rid the body of any remaining cancer cells. Living with stage four adrenal cancer does not mean I have a terminal illness. This means that the cancer had spread from its primary location to another location in my body--from the left adrenal gland to the liver. The good news is that surgery is the best treatment and surgery has been effective each time. Not many doctors have seen patients with adrenal cortical carcinoma. I have inquired about my case to doctors in the United States and also in Europe. When meeting with a physician most of the time I am the only patient that a doctor has seen with ACC. It has been frightening to discover that doctors do not know why there is no effective adjuvant chemotherapy for adrenal cancer. I used to think they knew everything. One doctor will say absolutely yes to chemo while another will say definitely no. Who should I trust my life with? TREATMENT: THE WAIT AND SEE APPROACH As the patient, I have chosen to be pro-active. I seek as much information as I can because no one else will. Together with my doctors, I have chosen a plan for caring for my health. Because I have only one kidney remaining and because each surgery has been a success, I have opted for the wait-and-see plan. I receive CT scans every three months while I "wait-and-see" what my body has planned. Surgery is the best treatment whenever possible. TODAY I've been cancer-free since 2002. Currently, I am going to school for my teaching credential so I can teach 4th or 5th grade. I have one year left! Keep in touch with the day to day web log. It's really more like month to month. Well actually it's whenever-I- feel-inspired-I-think-I'll-write-something-in-the-blog blog: Following the Sun blog Writing can be therapeutic (sometimes). So if you are a cancer survivor and want a blog email me and I'll set one up for you on blogger.com. Before I forget, you can also read a little about me and ACC in a local California newspaper. GETTING THE WORD OUT Please sign a petition asking President Bush to increase funding for ACC. Click here to sign now. It only takes a few seconds. Help spread the word by forwarding to friends who may share an interest in finding a cure for a very rare and lethal cancer. THANK YOU I am thankful to everyone in my life. I am blessed to have the family and friends that stand beside me. Thank you for all your support, love and prayers. Thank you Dick Beverlin and all who are part of the ACC support group. Thank you to the very skillful and knowledgeable physicians along with their nurses and assistants, that I have been blessed to have met. Thank you to all the doctors and scientists who spend their entire lives investigating cancer. I pray that one day there will be a cure. Thank you Dr. Westfall, my web design professor, for your continued support and ideas. Each day I continue to meet those who are new to this world of cancer through the internet. Today, I am at peace in my life. Each day I ask for God's blessing and mercy and I feel each day he grants these to me. I am thankful for HIS guiding light along our journey we call life. May your will be done. Thanks be to God.	HOME ABOUT ME WHAT IS ACC? ACC SUPPORT GROUP ACC IN THE NEWS VOLUNTEER IN PUBLIC POLICY ACC RESEARCH FUND HELPFUL LINKS DAY TO DAY BUY A KIDNEY BEAN SIGN A PETITION SIGN MY GUESTBOOK VIEW MY GUESTBOOK THANK YOU DISCLAIMER PUB MED TOP 50 HOSPITALS EMAIL ME
CONTACT INFO CURE ADRENAL CANCER! c/o Arlyn PO Box 604 Chino Hills, CA 91709-0021 or email to: cureacc at gmail dot com
Following the sun in Napa

Hello. My name is Arlyn and I am a two-time cancer survivor. I wish this web page could be solely about my interests in travel, photography, music, dance and other great passions. Instead it is about a passion that I live, eat, breathe, sleep and unconsciously think about every day. Cancer is my passion and finding a cure is my lifetime resolution.

I used to live on a tiny island in Hawaii. Living there and being that close to the sea and sand was a good remedy for a restless soul. In 2002, I was living in Hawaii when the cancer had recurred. I recuperated from surgery in California where my parents live and have remained here ever since. I know I'll return someday to the peaceful Hawaiian sea. California isn't so bad. Although the beaches aren't walking distance, I can drive to the beaches and hike the nearby mountains. Week-long road trips are now possible.

If you know anyone who may be going through cancer for the first time, please email me cureacc at gmail dot com.

E HO MAI IA'U KA MALUHIA [Hawaiian for grant us peace]

MY INITIAL DIAGNOSIS
In 1998 I was 27 years old when diagnosed with adrenal cortical carcinoma (ACC). After complaining of flu-like symptoms, a tender abdomen and a 104 degree fever I went to the doctor who sent me to have blood and urine tests. These tests showed a very high white blood cell count, a signal of an infection. A CT scan showed a massive 17 cm tumor. After surgery to remove the football-sized tumor, kidney, adrenal gland, lymph nodes, and a rib, I was diagnosed with having this thing called cancer. Because of the size of the tumor, I was first diagnosed with stage two ACC. Pathology reports showed the tumor to be nonfunctioning and malignant.

IT CAME BACK
In 2002 I had my first recurrence. I had almost made it to my four year anniversary of being cancer-free when a routine CT scan showed a new 6 cm mass in my liver. I went to the Mayo Clinic to remove part of my liver. As with the first surgery, the tumor was totally removed and encapsulated. Pathology reports confirmed that this was a metastasis, or spread, from the cancer in 1998. This recurrence placed my cancer at stage four.

A few months after my liver resection, I was told I had a new 6 cm tumor. Laparoscopy to remove my right ovary proved that the tumor was benign.

FRUSTRATION
There is no cure for this rare cancer. Doctors differ in their follow-up treatment. There is no proven effective adjuvant chemotherapy to rid the body of any remaining cancer cells.

Living with stage four adrenal cancer does not mean I have a terminal illness. This means that the cancer had spread from its primary location to another location in my body--from the left adrenal gland to the liver. The good news is that surgery is the best treatment and surgery has been effective each time.

Not many doctors have seen patients with adrenal cortical carcinoma. I have inquired about my case to doctors in the United States and also in Europe. When meeting with a physician most of the time I am the only patient that a doctor has seen with ACC. It has been frightening to discover that doctors do not know why there is no effective adjuvant chemotherapy for adrenal cancer. I used to think they knew everything. One doctor will say absolutely yes to chemo while another will say definitely no. Who should I trust my life with?

TREATMENT: THE WAIT AND SEE APPROACH
As the patient, I have chosen to be pro-active. I seek as much information as I can because no one else will. Together with my doctors, I have chosen a plan for caring for my health. Because I have only one kidney remaining and because each surgery has been a success, I have opted for the wait-and-see plan. I receive CT scans every three months while I "wait-and-see" what my body has planned. Surgery is the best treatment whenever possible.

TODAY
I've been cancer-free since 2002. Currently, I am going to school for my teaching credential so I can teach 4th or 5th grade. I have one year left!

Keep in touch with the day to day web log. It's really more like month to month. Well actually it's whenever-I- feel-inspired-I-think-I'll-write-something-in-the-blog blog: Following the Sun blog

Writing can be therapeutic (sometimes). So if you are a cancer survivor and want a blog email me and I'll set one up for you on blogger.com.

Before I forget, you can also read a little about me and ACC in a local California newspaper.

GETTING THE WORD OUT
Please sign a petition asking President Bush to increase funding for ACC. Click here to sign now. It only takes a few seconds. Help spread the word by forwarding to friends who may share an interest in finding a cure for a very rare and lethal cancer.

THANK YOU
I am thankful to everyone in my life. I am blessed to have the family and friends that stand beside me. Thank you for all your support, love and prayers. Thank you Dick Beverlin and all who are part of the ACC support group. Thank you to the very skillful and knowledgeable physicians along with their nurses and assistants, that I have been blessed to have met. Thank you to all the doctors and scientists who spend their entire lives investigating cancer. I pray that one day there will be a cure. Thank you Dr. Westfall, my web design professor, for your continued support and ideas. Each day I continue to meet those who are new to this world of cancer through the internet.

Today, I am at peace in my life. Each day I ask for God's blessing and mercy and I feel each day he grants these to me. I am thankful for HIS guiding light along our journey we call life. May your will be done. Thanks be to God.