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