Good morning Deborah.

Dr. Shah works out of MSK's Commack Clinic in Long Island if that is any easier. I fly into LaGuardia. Will be back on 4 September for two nights and my 5th visit. My last visit will be February - one year follow-up.

Yes, it has been costly, but I figure I am worth that, am still working plus with Steve gone, why not. Since I have to fly in, I fly in from Asheville on Monday and depart on Wednesday morning. I go to the hospital and pick up my stool sample package on Monday afternoon, have dinner at a favored Italian restaurant, Finestra close to the hospital and hotel - New York Presbyterian Hospital Hotel or guest facility which cooperates with MSK and is there for those of us visiting the hospitals. It's not the Ritz, but very nice and well priced for NYC.

On Tuesday morning, I preform my "duty" and head to hospital for fasting labs and to turn in my event package. You might be able to do it all on one day if you are regular. So, stool sample and fasting labs, followed by breakfast for me, and since Dr. Shah's clinics are on Wednesday, I "see" her the next day. The first meeting was face-to-face and she came into Manhattan to the Koch Center on I think 74th off of York. Hotel is on York in between 70th and 71st Street. Nice walk, no car needed. Follow-ups are video/tele-visits. You could do a lot of this from the comfort of your own home - except the labs, but MSK has a number of clinics that might allow for the labs. I have to get into NY due to Medical Licensing Laws. Dr. Shah cannot function across state lines.

After my window tele-visit, I fly home. I've been making the best of it. I joined the Metropolitan Museum and visit it while I'm there ($30 a visit vs $110 for the year and you can bring guest seemed worth it), go to St Patrick's Cathedral for mass and walk to the Met on Tuesdays. They now know me there. I love the City experience and will miss that. I pretend I'm a local. Gotta have fun.

Here's the other part that kind of bothers me... I am an RN in the Research Department of my hospital. We cover all lab, procedure, and Provider costs incurred due to the study. This study does not. In addition to my necessary travel, food, lodging expenses, I have had to pay $1492 in co-pays. I have a very good insurance policy.

Everyone at MSK has been nothing but professional, personable, and polite. Dr. Shah is brilliant and very approachable. She is involved with the HealthTree Foundation. I attended a round table she was on in Durham, NC and had alerted me to. It was SO informative and gave me hope. We will survive. We know too much and advances are happening every day. I say that as a very hopeful, 65 y/o with no current comorbidities. Having a MGUS/SMM/MM specialist on our team is imperative. Local Provider that is knowledgeable supported by a Specialized Provider (SP) on the cutting-edge. I failed Steve by not doing that. I had no clue when he got under-diagnosed with MGUS that it was probably SMM. Maybe Dr. Shah could become your SP and that would cover two things. Dana Farber in Boston is also doing great things with MM research - Paul G. Richardson is pretty impressive as well as others there. Do the research and make a sound choice that you are comfortable with.

Let me know if that is what you were thinking of as far as "what your experience has been." Best wishes. Teri