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.

MANIC MONDAY

I didn't sleep all night. At 5 am I took the taxi to Straub and demanded by brain CT, along with a complete blood panel, in the ER. I could not wait two more days to find out if the THING was in my brain. Dr. Dunn gave me the results ... negative! I walked into work a few hours late but they were so okay about it. No one at works knows yet. It's good to be at work. Busy. Busy. Busy. During lunch I make an appointment to see Dr. Guerrero for a second opinion (2nd, 3rd, 4th and 5th opinions should be made by doctors outside of your practicing doctor's group for an unbiased opinion). This afternoon I went to see Father Dave at Saint Peter and Paul for his opinion. He had no answers. He admitted he doubted God at times. He offered a prayer and administered the sacrament of anointing with oils.

SUNDAY

I talked to Michael about it tonight. We went to Starbucks (on Ward) and discussed the meaning of life. We also prayed for a miracle. I really needed to talk about it. Feeling better. Not really. We went to Kinko's so I could fax my doctors in California for opinions. Another plan is to have surgery in California so I can recuperate there.

ROUND TWO

I met with my Dr. Liu at Straub today to review my CT scan. Dr. Liu, my oncologist, asked me how I was feeling. First he said that the x-ray came back negative and I let out a heavy sigh of relief. And then a second later my worst fear was realized. He told me that my CT scan showed a mass in my liver. He is certain it's a metastasis from the ACC over three years ago. The THING in my liver is currently the size of a 6 cm orange (again with the citrus fruit!). I remember losing my breath because I almost choked trying to gasp for air, then reaching out to touch him to make sure I wasn't dreaming. He backed away. I'm guessing he positioned himself far enough just in case he thought I might strike him after he explained the CT report to me. He gave me a referral to a surgeon and walked out. I had so many questions for him but he was in a hurry. Well, I shamelessly cried out of amazement and confusion. I'm NOT afraid of the treatment that is going to rid this THING. What worries me is WHERE else is this THING hiding, living, multiplying inside of me? I discussed my headaches with him so he ordered a brain CT on Wednesday the 23rd. On the 30th I have a consult/review of the brain CT and on February 1st I have a surgery consult. Since I have two weeks until the surgery consult, I plan to search for another opinion.

I want to tell my family but don't know how to. I don't need them to worry especially them being over 2,000 miles away.

On my way home, I got off the bus a few stops early so I could walk if off. Walk whatever I could off...the shock, the hurt, the fear and anger. Anger of this THING I have no control of.