Monday, August 26, 2013

The Big Wedding!

Saturday was my niece’s wedding!  It was a big fancy affair in Boston.  The weather was perfect and the bride and groom were very happy.  My brother (father of the bride) spent the whole last year trying to convince Erin to go to Las Vegas and elope and came up with a cheaper alternative to all of her wedding ideas. That was all to no avail as the wedding was in a beautiful location right on the Boston Harbor with all the accoutrements. 
Everything was excellent – the company, food and entertainment.  A good time was had by all.

When I started going to Dana Farber for my cancer care in January, I said to myself that if they said I needed surgery, I would have it because the people I have spoken with who are carcinoid patients from Dana Farber are not always recommended for surgery, as they are at some other places.  When they did recommend me for surgery last April, I said that I would like to hold off on that until after my niece’s wedding in August.  Both Drs. Chan and Clancy thought that I should do it sooner.   I needed to get myself comfortable with the concept of surgery and I wanted to be in good condition for Erin’s wedding so that I did not take any undue attention away from the bride by being sick Aunt Beth.  I also did not want to have surgery in the summer when a lot of medical personnel are new in their roles and/or on vacation.  Since I am asymptomatic, I figured it would be ok.  So far so good.  Today I came back to work and one of my coworkers asked me what I will be doing now that the wedding is over and I said focusing on my upcoming surgery – not quite as fun!

At the wedding, several people came up to me and started asking questions about my cancer.  These were people I did not know or knew only as acquaintances.  I was not really in the mood to talk about my cancer at the wedding.  I deferred the cancer talk and changed the subject.  Since I have a small family, they must have figured that I was the Aunt with cancer.   Ugh…

So, while Erin and John are honeymooning in Europe, I will start thinking about listening to those calming meditations about reframing my thoughts to a more positive place and positioning myself for surgical success.  My pre-op appointment is on September 6th so that’s my next engagement before the surgery.  Here’s to keeping myself calm and serene in the upcoming weeks.



Sunday, August 11, 2013

Three Year Cancerversary!

This month is my 3 year anniversary of being diagnosed with carcinoid cancer.  Since then, my tumors have not progressed at all.  I am still asymptomatic.  I believe my case is somewhat unusual because my primary tumor has not been found and I have one very large tumor that is hanging from my liver and in front of my right kidney.  This tumor measures 8x10x12 cm and is pressing on my small intestine, causing an indentation that can be clearly seen on a CT scan.  It is this tumor that could cause a bowel obstruction. I also have other tumors scattered around my abdomen and pelvis.

This large tumor gets the biggest reaction from doctors.  It is quite mobile and sometimes doctors can feel it and other times they can’t.  That’s kind of weird!  The general reaction is that they have not seen such a large tumor in that location before.  These tumors have been with me quite a while and I have no idea when they started or continued to grow.  I’m just happy that there has been no progression since my diagnosis. 

I re-read my post from last August writing about my second anniversary. I am amazed at how far I’ve come in the past year in terms of improving upon my medical care and getting clear and articulate answers to questions concerning my treatment.

Last August I was questioning everything about my treatment including why I was taking Sandostatin and the justification for a large surgery when I had no symptoms.  Now I have a whole new team working with me and it has been much better in terms of information flow.  I feel a lot less stressed about my care, even though I’m about to have a big surgery.

This week has been a busy one in my cancer life.  On Friday I had a CT scan, an appointment with Dr. Chan, a meeting with a nutritionist and then my Sandostatin shot.  Dr. Chan said my CT looks stable with no changes. 

I also met another carcinoid patient from the Carcinoid CafĂ© on Facebook.  We had been messaging each other for the past two weeks. She had an emergency appointment Friday at Dana Farber so we met in the radiology waiting area.  It was nice to meet in person.  Both her CT and mine came back stable with no growth in tumors.  Good for us!  On to year 4 for me.

Sunday, August 4, 2013

Paying Until it Hurts and Medical Fantasies

The cost of medical care in the US is repeat theme in this blog, primarily because I find it outrageous.  I keep bringing it up because the New York Times is running a series on the cost of common procedures in the US. The most recent article is in the paper today and it caught my attention yet again.

The first article was on colonoscopies, the second on childbirth and today's on hip replacements.  The links to the articles are below:


The headline from today’s article concerns a Michael Shopenn who was turned down by his insurance company for a hip replacement due to a pre-existing condition. Mr. Shopenn started looking outside the United States for treatment. He found a hospital outside Brussels that charged only $13,660.  The cost in Belgium was about 6x less than in the US, where the typical charge is $78,000.
This got me thinking - this is purely my imagination running wild about how I might structure my cancer care if I had the ability and the means to do it.  My medical costs, outrage, business background and love of travel is fueling this fantasy.

My insurance covers between $2,500 and $8,500 for my monthly Sandostatin shots.  Let’s just say for example, that I could get a Sandostatin shot anywhere outside of the US for between $417 and $1,417 (the insurance coverage prices above divided by 6).    If I could get my insurance to pay half of what they are paying for the drug in the US ($1,250 - $4,250), I could find places to do my shots and  then pay for my airfare and hotel with the leftover funds.  I could also include my spouse in the cost but to be fair, we would pay for his travel expenses out of our own pockets. 

We could have great travels with trips all over the world while handling my cancer care.  Since I know that my shots are going to be every 28 days, I could book these trips well in advance to take advantage of early booking discounts.  It would be a win-win for both me and my company’s cost of insurance.  I probably don’t have enough vacation to do this for all 12 months but even if I did it for 6 months, the cost savings to my company would be substantial. 

Some places where I could surely get cheaper Sandostatin shots would be Switzerland, UK, France, Thailand, Belgium, Canada, India, Argentina and Australia, among others. I’m sure I could find some great things to see and do before or after my doctor appointments.

I’m guessing that most doctors in the US would not approve of a patient getting only half or none of the shots at their location.  They would not want to be responsible for anything that could happen when I got the shot elsewhere.  My company and their insurance carrier would never agree to this either.  Oh well, it was fun to think about.  Back to reality!