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.

Liver Surgery ~ FINALLY!

So much has happened. After arguing with my HMO for the past week about why I should have the surgery in Minnesota, they finally agreed. I had tons of help from my mom, sister, and aunts. We bombarded the HMO office in Hawaii everyday with letters and calls. The HMO isn't that bad, now that they agreed. But I am definitely changing to a PPO the first chance I get. I had surgery to resect part of the liver and tumor on the 20th. I remember waking up and seeing Dr. Zarroug, Dr. Que's assistant surgeon. He looks like he's only 18 years old. I told him I didn't want to know anything until my family arrived and he kept talking. He said everything went well but I refuse to believe him until I read that pathology report. My nurse's name is Mackenzie. She's originally from Iowa and she is very cool. I can see the snow from the window outside in the hall. That's one thing I look forward to when I go for my daily exercise. I stand there watching the snow fall. I've been renting videos (they have a video library in my ward) and watching the Winter Olympics all day. I miss watching Friends. Speaking of friends, I am so grateful for all the well wishes I've received from my family and friends.

LAND OF 10,000 LAKES

Arrived in St. Paul, Minnesota yesterday. My entire family (Mom, Dad and Jen) is here. We drove 1 and 1/2 hours southeast to Rochester. Rochester should be called Mayo Clinic City! The hotel where we are staying is conveniently connected to the hospital, not to mention a mini mall and restaurants. There are amazing subways and skyways so you never have to leave the building. Reminds me of the Jetsons. Today I spent the entire day being poked, prodded and scanned. My veins keep rolling and the nurses don't believe me the first time that they need to use a butterfly needle. The hospital gowns here have three holes for your arms so it wraps around completely. I must say it's very efficient. It's like an assembly line when it comes to drawing blood. The waiting rooms are huge and the wait is minimal. You're given an itinerary like on a cruise ship. So each department is expecting you as you arrive. My oncologist is Dr. Bible. I like him. In his office is a life size replica of a pancreas. It's covered with tumors so you know what it looks like when the damn tumor is seeded in there. That is exactly what we need to see when we go talk to our oncologist. I am so visual that I cringe and cry. I learned all sorts of new terms from him. The one that I most remember is what he calls "guarded optimism." He says I should keep this type of attitude when dealing with this ACC. If I want, I can choose to have the surgery here. And yes he also said that it needs to come out. I still keep hoping this is all a dream. He recommended I meet with Dr. Que, a skilled liver surgeon. My mom's sister who lives in Wisconsin will be driving to be with us. My aunts (Tita Leni + Tita Meds), uncle (Tito Jdy) and cousin (Ate Ria) that live in Indiana will be coming too! It will be a mini-family reunion. I heard they're bringing rice and fish and all that good stuff. I can't wait to see them.

ALOHA OE

My sister, Jen, is now here from California. She is an angel. I had mentioned that I couldn’t sleep at night and she took time off from work to give me support. While I'm at work she does research at the library. She's a great cook but we've been eating out every day. We are leaving soon for California where I will be having surgery. Friends at work took me out for my last supper at Auntie Pasto's, really ono Italian. I wonder how soon it will be until I can return to work. A hui hou (until we meet again).

ONE WEEK LATER

It's been one week since the big news. All my friends and family know. Denise even gave my CT scans to her doctor friend at Queen's. He called to confirm the tumor and yes, it had to come out. In the back of my mind I kept hoping he would say that this is all a big mistake. Denise, Neal, Lisa, Michael and I met at John's for a healing prayer session. I really needed it. I am so thankful and blessed.