My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Friday, April 23, 2010

Back Home!

I am just back from my trip to Washington DC. It was wonderful. I arrived on Friday night and walked several miles in DC on Saturday. I walked to the National Mall and to the Smithsonian Aerospace Museum, the most visited museum in the world. I took a tour highlighting the Apollo space missions and watched an IMAX presentation about the Hubble telescope...I love seeing pictures from the Hubble on-line. Saturday evening I went to meet the family of a patient with appendix cancer I helped four years ago, she is still cancer free and doing great, we talked until almost midnight, I think she will always be a friend!

On Sunday I attended a church service at the National Community Church, then had lunch with Dr. Esquivel at Union Station, it was a great lunch...I admired him before but do even more so now. I am on the board of his new organization, the American Society for Peritoneal Surface Malignancies, so it was a working lunch.

I spent Monday in the PEW headquarters and met so many great people: breast cancer and lymphoma survivors, a 16 year HIV survivor, and a terrific ER physician who is a heart transplant recipient. I also met an ethnobotanist ( Paul Alan Cox) I truly admired; I ordered his book Nafanua: Saving the Samoan Rain Forest. All were people, like myself, who had benefited from drugs derived from nature (except the ethnobotanist, who has helped develop drugs from natural sources). I had some time left over on Monday so did a bus tour of DC...mostly because I love hearing about DC trivia. For example, Washington has an exact replica of the Liberty Bell, but twice the Washington it is called the Freedom Bell. So interesting, the original liberty bell is engraved with the word "Pennsylvania", but it is misspelled (one n and not two) to make it an exact replica, the word is also misspelled on the Freedom Bell. There's lots of fun DC trivia.

Tuesday and Wednesday I was on Capitol Hill to help promote the Global Conservation Act, which will help our nation coordinate efforts worldwide to preserve nature and nature's pharmacy. I met with a representative who worked as a police officer for 33 years before entering politics, and who wrote a book about his capture of a serial killer, Chasing the Devil. All of the proceeds from the book go to helping kids born to crack and heroin addicted mothers; I ordered the book the day I met him. I learned of politicians who are truly caring and who truly want to make a difference. Many support efforts to conserve nature. It changed my view of politics and politicians. There are many good people on Capitol Hill who serve us well.

Thursday I had a "free day", and after walking almost 10 miles to sight-see during the week, I decided to just curl up with a book in my hotel room, though I did visit Lafayette Park. Then I spent the rest of the day Reagan airport, then to O’Hare, then the bus ride to Indiana, then the 45 minute drive home from the bus stop. Amazing that it's only a two hour flight to DC, but the travel in the end takes the better part of a day (plane was late, of course).

So though I love DC and loved my experience there, I'm glad to be home! But I have lots of good memories and learned so much...and met several people I hope to stay in touch with!


Hrund said...

VERY interesting journey to Washington DC. I see that you are on a patient resources committee with Laura Lambert:)
What is PEW by the way

Carolyn Langlie-Lesnik RN BSN said...

Hi Hrund!

PEW is Pew Charitable Trusts,a non-profit charitable organization providing grants to improve public policy, inform the public, and support community service.

I've heard only good things about Laura Lambert, you are in good hands! I'm proud to serve on the committee with her.

How are things in your country with the volcano? I've been thinking of you!


Mel said...

It is so wonderful to see that there are survivors of this rare cancer. My husband, Michael Martel Barrett, died Nov 2004 of appendiceal cancer. He was diagnosed with Stage IV December 2001. He went through the round of chemo and had a few years before his recurrance. I regret that he would not change to MD Anderson or consider treatment other than with Memorial SW Hospital and Texas Oncology. Dr Zanger was an awful oncologist and Texas Oncology is without compassion - very profit driven. Every time I see these two for profit businesses advertising - I feel anger. I knew there had to be hope out there and I am glad that you have found it. I will be following your blog. Thank you for your blog.
Melanie Barrett

Hrund said...

Hi Carolyn. Thank you for your explanantion on PEW. You Americans are known for your abbreviations and sometimes it´s difficault to understand when reading professional articles:)
I´m very much looking forward to meeting Laura Lambert although anxiety also grows as the operation gets close, but that´s normal:). In Iceland we have one appendix adenocarcinoma with signet ring every 2 years and that´s me this time!
Anyway the volcano is beautiful if you don´t get too close. It is a bad kind of eruption because of all the horrible and stiky mud it erupts. Still it´s basically only the farmers, the animals and the nature in the near neighborhood that suffer. It doesn´t bother people or nature anywhere else in the country. Media is making too much out of this and some travellers that intended to travel to Iceland this summer have cancelled, which is aĆ° very bad thing for our economic status and a total nonsense

Cindy said...


Thank you for sharing your story of survival. I have been recently diagnosed with a very similar cancer of the appendix and colon. I am only 38 years old and am trying to get my insurance to let me seek treatment at MD Anderson in Houston, TX. I am currently in Denver and I have not found an oncologist here who has ever treated this type of cancer of anything similar. Do you know of a resource I can use to find all of the facilities in the country that have treated this type of cancer? I have been told I need to have a debulking surgery as well as the chemo pumped into the abdominal areas. Thanks so much! Cindy

Carolyn Langlie-Lesnik RN BSN said...

Hi Cindy,

I'm sorry you are having to deal with this diagnosis, many of us have to travel for treatment and deal with the insurance issues. I have a list of several of the specialists in the nation on the "Physicians and Facilities" page of my web site, I had several of my local physicians write letters to my insurance company stating my disease was rare and needed to be treated out-of-network, in the end they gave me full coverage for out-of-network care. I wish you the best!


hrundh said...

Hi Cindy. I´m so sorry to hear what you are dealing with at an early age. I just want to tell you how this was done here in Iceland. I was diagnosed in october 2009, stage IV, had an operation, colon, uterus and ovary removed. About a month later I started recieving chemo 6 rounds of Oxaliplatin i.v. and Xeloda tablets (5 fluouracil)3 tablets two times daily for 8 days after chemo. This was completed in the end of january. HIPAC is planned in Boston UMASS in May 26th. Surgeon Laura Lambert. While waiting for the operation I have recieved 3 rounds of Irinotecan (Campto) and same amount of Xeloda as before. Now I´m working on gaining strength for the operation. I have completely changed diet and I´m seriously practicing Centering prayer. The method comes from your "neighbour" Thomas Keating in Snowmass Colorado:) The disease seems quiet according to my good condition, blood samples, CT´s and other tests.