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!

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