(Not-So) Wordless Wednesday ~ Bill and I on Memorial Day

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Welcome to Wordless Wednesday.... I'm looking forward to to seeing all of your photos, so if you leave a comment, please leave your email address so I can come on over and take a look.


These photos are from Memorial Day. Bill got dressed first and went downstairs while I was in the shower. Then I got the doggies and myself ready for the day. When I got downstairs, I looked at what Bill was

ACOR.ORG

Last weekend, I registered with acor.org (Association of Cancer Online Resources), which is basically a virtual cancer community with a variety of resources and support groups, including mailing lists and "message boards" for specific cancer types. Of course, I joined the Carcinoid Cancer Online Support Group, which is an unmoderated forum for patients, caregivers, researchers and doctors to discuss "clinical and nonclinical" aspects of NET cancers.

On Sunday night, I posted my own burning question on the carcinoid message board: am I on the right course with Sloan-Kettering's "wait and see" approach given my pathology, ongoing health issues, and recent scan results? Within a few hours of my post, I had 12 experience-based, insightful responses. Since then, I have continued to get emails and responses - which overwhelmingly echo the same thing: given the nature of carcinoid cancer in general, and my pathology and symptoms in particular - I really need to see a carcinoid specialist for a second opinion on a more aggressive treatment plan.

Now, there is nothing in the world I would ever say against Sloan-Kettering... they saved my life, and Dr. Nash is one of my all time heroes; period. Dr. Nash's schooling includes both Harvard and Columbia, and he's authored many papers on advances in minimally invasive surgeries for colorectal cancers. He is the best at what he does... but his practice does not focus on long-term carcinoid cancer care.

Gary and I discussed our options, and decided to contact Dr. Richard Warner's office at Mt. Sinai (one of the best carcinoid experts in the world) for an appointment. Unfortunately, he only accepts Medicare (no private insurance), and a consult with him runs between $750 to $1000 - way out of our price range. We then turned to the CCF website, which lists doctors who are carcinoid / NET specialists, which they define as having:

* 10-20 years or more experience in treating carcinoid / NET patients
* authored or coauthored more than 10 peer review articles on carcinoid / NETs
* treated 100+ carcinoid / NET patients over time

While there was one Sloan-Kettering doctor listed (Dr. Kelsen) we decided for a second opinion we really needed to look outside of the Sloan-Kettering philosophy - and found two possibilities: Dr. Matthew Kulke at Dana-Farber Cancer Institute in Boston and Michelle Kim at Mt. Sinai in NYC. The benefit of Dr. Kulke is that Dana-Farber has a carcinoid / NET research program that evaluates over 200 NET patients a year. The benefit of Dr. Kim is that she works directly with Dr. Warner. I think I'll post these names on the acor.org message board, and see if anyone has any experience with them.

I strongly recommend joining acor.org; it is a lifeboat for us zebras - who are otherwise left treading water in a sea of "huh...I never heard of that cancer before" frustrations.

UPDATE: I already got a few responses from my acor.org posting re: doctor referrals ... including one incredibly important one: the CCF lists both carcinoid experts and those willing to treat noid patients... the experts, however, are in a light blue box. Thus - Dr. Kelsen and Dr. Kim are not "experts" in carcinoid; Dr. Kulke is.

Second UPDATE: I put in an appointment request for Dr. Kulke at Dana Farber Cancer Institute, who is covered by my insurance and comes highly recommended by several other noid patients. Thanks again for everyone's input.

A dream I had of you

 The waves lashed the rocks, bringing along cool breezes of moist air. Sun felt like a dim circle circle of light hidden behind a screen of clouds. I was almost lost in all this amazing phenomena when I looked at my left and forgot about my existence, forgot everything I had been beholding just moments ago.What made me forget everything were your eyes, I felt like I had found a whole new

A Mystery !

Some say its life, while others say its waste of time.Some say its the basis for human existence, while others say it doesn't even exist.Its got a history of its own. Shakespeare's Romeo and Juliet set a fundamental example for it and its strings have now been stretched to unlimited stories.Everyone talks about it but still doubts its existence.Every song, every movie, every book features a

Happy Memorial Day

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As we all celebrate Memorial Day today with our families, having picnics, swimming, laughing, playing and whatever else you may be doing, please remember to take the time to think about what today is really about.




Photo Credit
Please remember those who have fought and died for our freedom and those who continue to serve. Thank you!




BTW, if you have a moment, I found a wonderful site

Memorial Day Memories

My father is a West Point graduate, and my mother was a military wife (as were both of my grandmothers). Memorial Day gives us a chance to say thank you... to the soldiers and families of soldiers who make the ultimate sacrifice, every day.

My mom and dad (now divorced) were married at West Point


My Dad and I on the army base in Washington State

Even tough army officers have to change diapers and make little airplane noises to get their babies to eat...

My grandpa Di Maria in his air force uniform with my grandmother. (They have been married for over 60 years.)


My paternal grandfather, who died from diabetes before I was born, in his army uniform.




(I'm not a Tim McGraw fan... but darn this video is good.)

Sorry I Haven't Been Around... I'm Having Laptop Trouble

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UGH!!  Again I am having trouble with my laptop. I'm hoping it is again just my adaptor, but hubby thinks it is where the adaptor plugs into the computer (I sure hope not) so I'm going to order ANOTHER adaptor - this makes my third for this HP laptop since November 2009.... BLECH!

So, I may be away from the blog for a bit, I have a desktop (it is in pieces right now) that I can't sit and