Vacation

Wawona Sequoia Tree

El Capitan

Owen and I just spent the last eight days in Yosemite and Lake Tahoe, CA on vacation.  The weather and scenery was gorgeous and it was a nice respite from work and all these doctors and treatment thoughts.  As I’ve said before, getting away from the rat race, relaxing and enjoying our short time on earth is one of my favorite things to do. 

Half Dome

Yosemite was incredibly beautiful as we expected – crowds were low, probably due to its being off-season as well as the well publicized hantavirus that had killed a few tourists this summer.  Below are some pictures of the famous scenery there:  El Capitan, Half Dome and a Sequoia tree,  It’s hard to capture the size and scope of what we saw in these photographs.

We then went to Lake Tahoe and stayed in Stateline which is right on the California and Nevada border.  Lake Tahoe is gorgeous as it is a large lake surrounded by mountains.  The elevation here ranges from 6,000 – 8,000 feet.  This location is quite touristy as there are many hotels and restaurants on the California side and just up the block is the Nevada side that has a few casinos.  Close to Stateline is Emerald Bay, which is an offshoot of Lake Tahoe and several really nice beaches. 

Emerald Bay

Baldwin Beach

Lakeside

Tomorrow I am back to work and next week back to doctors to discuss if my current treatment of this disease needs to change.  I feel well rested and ready to face my current challenges.

Surgery?

“Not dread of cancer or death but rather dread of cancer treatments has left me in its thrall” – Susan Gubar

As I continue to contemplate surgery to remove some of my carcinoid tumors, I read two articles this week that scare me.  I am still asymptomatic.  Symptoms are defined as a “subjective indication of a disease or a change in condition as perceived by the patient”.  In my case, one blood and one urine marker remain higher than range but are causing no symptoms.  I liken it to having high blood pressure or cholesterol that carry no symptoms but can cause heart attacks or stroke over the long term.  When diagnosed with these conditions, patients usually take drugs such as statins or blood pressure medication.   

My doctors have told me that these high blood/urine levels may cause future health issues including fibrosis that causes heart valve problems and diarrhea due to collapse of the mesentery.  Not all carcinoid patients have or develop fibrosis.  I have been taking Sandostatin LAR for nearly 2 years now. My high blood marker has come down substantially but is still higher than the desired range. My urine marker is still nearly as high as when I was diagnosed in August 2010.    Since starting Sandostatin LAR, I am not flushing anymore, but that was a relatively rare occurrence.  My doctors are recommending surgery to reduce the secretions from the tumors and get my blood and urine markers back into normal ranges.  The procedure they propose would be long, complicated and would require a substantial recovery period.

Since my quality of life (QOL) is very high now, I hesitate to have a large surgery.  Perhaps it makes more sense to wait until I experience some symptoms. 

The cover of this month’s Readers Digest has a picture of a doctor and the headline “50 Secrets Surgeons Won’t Tell You”.  The following comments were from doctors and here are a few of their quotes:

“Don’t assume your doctor’s recommendation is best.  Referrals may be politically motivated or be given because the doctors work within the same multi-specialty group” – Howard Luks, MD

“You should know that practically all surgeons have an inherent financial conflict of interest.  That’s because they are paid approximately ten times more money to perform surgery than to manage your problem conservatively” – James Rickert, MD

“Always ask about non-surgical options and whether there’s anything wrong with waiting a little while.  Surgeons are busy and they like to operate.  A professor from my residency would say ‘there is nothing more dangerous than a surgeon with an open operating room and a mortgage to pay’” – Kevin B. Jones, MD

“About 25% of operations are unnecessary, but administrators email doctors telling them to do more. This is not an insurance company putting pressure on doctors; this is not a government regulation.  This is private hospitals pushing doctors to generate more money by doing more procedures.  It goes on at America’s top hospitals.  The Cleveland Clinic has said this system of paying doctors is so ethically immoral that is started paying its doctors a flat salary no matter how may operations they do” – Marty Makary, MD

Saturday’s front page of the Review section of The Wall Street Journal has an article called “How to Stop Hospitals from Killing Us”.  The author is Marty Makary, author of one of the quotes above, who is a surgical oncologist at Johns Hopkins Hospital.  The article contains excerpts from his book Unaccountable:  What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care (I have not read the book).  This article scared me with comments like the following:

“Medical mistakes kill enough people each week to fill four jumbo jets”

“If medical errors were a disease, they would be the sixth leading cause of death in America – just behind accidents and ahead of Alzheimer’s”.

On describing his first day of residency:  “On rounds that day, member of my resident team repeatedly referred to one well-known surgeon as ‘Dr. Hodad’.  I hadn’t heard of a surgeon by that name.  Finally I inquired.  ‘Hodad’- it turned out was a nickname.  A fellow student whispered: ‘It stands for Hands of Death and Destruction’”…”as I rotated through training I learned that many hospitals have a Dr. Hodad somewhere on staff (sometimes more than one)”. 

He goes on to say that doctors don’t turn in other doctors in for bad medicine because of the ramifications to their careers and reputations.  He goes on to give some of his ideas to fix these problems including more transparency concerning hospital success rates and culture, cameras in the operating room, open doctors’ notes that patients can revise and no more gag orders on patients who settle claims against doctors. 

In summary, he thinks that there needs to be more transparency about how doctors and hospitals function.  “To do no harm going forward, we must be able to learn from the harm we have already done”

I agree.

Mortality

This is a small book written by the late Christopher Hitchens.  It consists of essays he wrote for Vanity Fair from the time he was diagnosed with esophageal cancer in June, 2010 until his death in December, 2011.  When I started this blog, I included three of these essays in my “Interesting Articles/Information” section.  I admired Hitchen’s intellect, though I did not agree with most of what he wrote.  However, his cancer writings were right on the money, in my opinion:  intelligent, cynical and poignant.  Having experienced cancer for two years now, I found many of his observations quite true and his ability to articulate his thoughts very insightful.  If one had read the essays when they were on this blog or in Vanity Fair, one would have seen a decent portion of this small book.  Vanity Fair took them off their website in anticipation of the publication of Mortality, so I deleted them from here too.  Some of his thoughts follow:

“You sometimes feel that you may expire from sheer advice”

“Wellville to Tumortown”

“The citizens of Tumortown are forever assailed with cures and rumors of cures”

“Maladyland”

“Year of living dyingly”

“Topic of cancer”

“There is no stage 5”

“Lavish torture is the only prelude to a gruesome execution”

I would recommend this book to all cancer survivors. It is quite short though – about 100 pages and some of that is the introduction by Graydon Carter, editor of Vanity Fair and the afterword by Carol Blue, his widow.  Those who have already read some or all of the essays may wish to wait until it comes out in paperback.

September 11th

Today is the 11^th anniversary of September 11, 2001.  It was a beautiful Tuesday morning, just like today.  On that day, I was flying from Newark to West Palm Beach, Florida on a business trip.  My flight departed at 7:30 am and was to land in West Palm around 10:30 am.  I was going to my company’s training center in Boca Raton to teach an investment class to the sales force.  Everything was proceeding like a normal business trip. I was excited because Serena Williams was in first class on my flight.  I was in coach, so I didn’t get to talk with her.  I’m a big tennis fan and the US Open had just ended Sunday.  Serena was probably flying home to Palm Beach.  At about 10:00, the flight attendants told us to put our seat backs and tray tables up for our landing in Jacksonville.  Everyone started asking why we were landing in Jacksonville instead of West Palm.  We were informed that there had been a terrorist attack at the World Trade Center.  That didn’t explain the unscheduled landing, but everyone stayed quiet after the announcement. 

When we landed, the airport looked like an aircraft parking lot.  Many planes had already landed there and the airport was shut down.  The pilot must have radioed ahead to get Serena whisked out of the airport because I was only sitting 3 rows behind her and did not see her after I deplaned.  Meanwhile, the airport was a zoo, with many people wandering around.  All the rental cars were gone.  I then heard about the planes crashing in to the World Trade Center.  I could not reach anyone in New York City by phone, I had no idea how to get either to West Palm Beach or back home – I was stuck in Jacksonville!  I called relatives in Massachusetts because they were the only ones I could get through to – the phone lines in New York were overloaded.  I told them to try to get in touch with my husband because he did not know where I was.

I ended up on a bus from Jacksonville to Boca Raton and arrived at 7:00 pm.  I managed to find some of my colleagues at the hotel and borrowed a car so I could get toiletries and some clothes.  It felt good to be somewhere that I at least knew someone.  After hearing more about what happened, I realized that United Airlines flight 93 took off about 10 minutes after mine on the same runway that morning.  That gave me a shiver….

Even our hotel in Boca Raton was crazy – by the next day the FBI was all over the place because they thought the terrorist pilots had taken flight lessons in this part of Florida so they were at our hotel looking into things.  Weird!

On Thursday afternoon, three colleagues from the New York City area and I took off in a van to drive back to New York.  We took turns driving for about 5 hours each and got into Northern NJ early Friday morning.  The bridges and tunnels into New York were still closed, so the 2 of us that lived in New York City took the train into the city.  The city was like a police state when I got there.  I live about 3 miles from where the World Trade Center stood and the burning smell was really strong in my neighborhood for about 3 months after that.  It was surreal.  I was just happy to be home, alive and well.  There were pictures in front of the hospitals of the people who were missing – it all seemed so sad. 

My husband, Owen, worked for the Port Authority of New York and New Jersey for over 20 years.  He worked on the 55^th floor of the World Trade Center.  He had taken an early retirement package in 1996 – thank goodness or he would have been in the building!  He was there when the first bomb went off in 1993.  He knew some of the people who died in the 2001 attack; I did not.

Now, 11 years later, the time has dulled some of the shock and pain that was the character of New York City at that time.  I was out with friends last Friday night and when we finished dinner we saw the beam of light that shines well into the night sky down at the World Trade Center site for the week or so around September 11^th.   The light is visible from most places in Manhattan, the other boroughs and New Jersey. 

Despite the beautiful weather, this is a sobering day in New York as we remember that fearful time and all the lives lost on 9/11/2001.  I remember that day clearly as most people do and am happy that my plane landed safely.

Gratitude

My mother died when I was 35.  She was 63 and died of a heart attack on her way to work.  She probably did not know what hit her – it all happened so fast.  At that point in my life, I had just started a new job and I had not really experienced the death of anyone up close and personally.  I had lost my grandfather the year before but he was in a nursing home and was 93 years old.  Not only was my mother’s death sudden, she was unprepared to die; she had not yet filed her taxes. We had no idea what her thoughts and wishes were and her “affairs” were a mess.  Thankfully, she had a will and the estate was not too complex.  I was named the executrix. She was divorced many years earlier, I lived reasonably close to her and I worked in financial services so she must have thought I could handle it.  In hindsight, being the executrix may have helped me deal with the sorrow and pain of her death.

My mom was very smart, and quite funny. She was also an optimist who did not have regrets and didn’t dwell on things.  I like to think I that these personality traits are some of the better ones I inherited from her.

When you experience the death of a parent, especially at a fairly young age, you begin to realize that you are next in line and that life is short.  I realized it is important to enjoy every day. You never know when your time is up.

One of my favorite writers is Anna Quindlen.  She also lost her mother at a young age and it colors a lot of her writing.  Thank goodness I had been a long time reader of her opinion column in the New York Times at the time of my mother’s death.  Some of her thoughts on life are below:

Anna Quindlen, the bestselling novelist and columnist, reflects on what it takes to “get a life”—to live deeply every day and from your own unique self, rather than merely to exist through your days. “Knowledge of our own mortality is the greatest gift God ever gives us,” I've been living with mortality for decades, since my mother died of ovarian cancer when she was forty and I was nineteen.  And this is what I learned from that experience: The knowledge of our own mortality is that greatest gift God ever gives us.

It is so easy to waste our lives:  our days, our hours, our minutes.  It is so easy to take for granted the pale new growth on an evergreen, the sheen of the limestone on Fifth Avenue, the color of our kids' eyes, the way the melody in a symphony rises and falls and disappears and rises again.  It is so easy to exist instead of live.

“But you are the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk, or your life on the bus, or in the car, or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank account, but your soul.

 “Care so deeply about its goodness that you want to spread it around.  Take the money that you would have spent on beers in a bar and give it to charity.  Work in a soup kitchen.  Tutor a seventh-grader.”

“All of us want to do well.  But if we do not do good, too, then doing well will never be enough.”

“Life is short.  Remember that, too.”

“I've always known this.  Or almost always” 

These lessons were also my mother’s lessons. Her mother died young from cancer so she knew about the value of life as well.  Anna Quindlen puts those thoughts into words in a very special way. 

 Having cancer is a wake up call for most people.  Some people use the diagnosis to live better lives and others don’t.  My wake up call was when my mother died; the cancer diagnosis was not quite as big a deal.  My first vacation after my diagnosis was a trip to Northern Finland because I wanted to see the Aurora Borealis (Northern Lights) before I died.  We went to a small town called Nellim and saw the Aurora in all its glory on two different nights; we also went dog sledding which was not on my “bucket list” but was a lot of fun.  

In October, I will be going on a vacation to Yosemite.  I love being outdoors and in my opinion, the national parks are a small slice of heaven.  I also like it when I have the vacation already booked because then I can look forward to the time off. 

Life is so busy. Sometimes I feel like I am playing beat the clock!  As I rush through my frenzied life, I always take time off to enjoy the things I really love – family, friends and vacations.  I will always take the time to see a friend for lunch, even if I am having a busy day at work.  I always use my vacation time because in my opinion, that is why we work.  My motto is to be grateful for life.  Consider the alternative.

Big Med

This week’s New Yorker magazine has an article titled “Big Med” by Dr. Atul Gawande.  (There is a link to the article under Interesting Articles/Information to the right).  It is about how restaurant chains combine quality, cost control and innovation.  His question is “Can health care do the same?”  Dr. Gawande is a surgeon at Brigham & Women’s Hospital in Boston and he has written several books about healthcare quality and cost control. 

Big Med talks about how restaurant chains, specifically the Cheesecake Factory have been able to deliver high quality meals at a reasonable cost across the country to more than 80 million people per year.  On the surface, it seems ridiculous to compare the US hospital system to the Cheesecake Factory but after reading this article, one might not think it is so far-fetched. 

Dr. Gawande says “in medicine too, we are trying to deliver a range of services to millions of people at a reasonable cost with a consistent level of quality.  Unlike, the Cheesecake Factory, we haven’t figured out how.  Our costs are soaring, the service is typically mediocre, and the quality is unreliable.  Every clinician has his or her own way of doing things, and the rates of failure and complication (not to mention the costs) for a given service routinely vary by a factor of two or three, even within the same hospital.”

 He writes about how medicine in the US is changing; most physicians used to be self-employed but now only about 25% are. The rest are employees of large health systems.  He says “Historically, doctors have been paid for services, not results…we’ve generally been paid for what we do, whatever happens”.  Now most health insurers are linking cost reduction and quality improvement targets to financial goals:  “They want to create Cheesecake Factories for healthcare”.

This article devotes a lot of words to the business side of healthcare.  I found this quite interesting because I have a business background, but others might find it long-winded.  Basically the theme is that by getting scale through consolidation of healthcare systems, procedures and costs, medical care can be standardized, leading to lower expenditures and better outcomes. 

Dr. Gawande also discusses how he selected the surgeon for his mother’s knee replacement surgery.  This was quite interesting and informative.

His view is that “We’ve let health-care systems provide us with the equivalent of greasy-spoon fare at four-star prices, and the results have been ruinous.  The Cheesecake Factory model represents our best prospect for change.  Some will see danger in this.  Many will see hope.  And that’s probably the way it should be.”

I am in the camp of seeing hope in this model.  I would prefer evidence- based treatments and standardized care with substantial oversight on treatment protocol.  Unfortunately, as I contemplate surgery, I am in the old model of non-standardized care, hoping not to be in the lower quartile of patient outcomes.

Two Year Anniversary

This month marks the second anniversary of my cancer diagnosis.  My disease was identified by accident in August 2010 during a pre-operative sonogram prior to a hysterectomy.  The sonogram radiologist thought I had lymphoma. From what I’ve heard from other patients, this occurrence is not unusual.  Both my ob/gyn and my primary care physician (PCP) called me to discuss these results and to refer me to a hematologist/oncologist specializing in lymphoma.  However, because it was August, neither of these doctors was available for an appointment. They were either on vacation or they had just returned and were handling emergencies with current patients. I was scared and freaked out.  Here I was with cancer with no one to see me.  Finally, my PCP managed to get me in to Dr. L who agreed to see me as his last appointment before leaving on a two week vacation.  Dr. L was very nice and helpful given how scared I was.  He examined me and stated that I had no signs of lymphoma.  He did some blood tests and scheduled me for a CT guided biopsy. Upon Dr. L’s return, I learned that the biopsy was positive for carcinoid.  He then ran the CgA and 5-HIAA (both were elevated) and I was diagnosed.  I was fortunate. This was a very quick process, given how long it sometimes takes other patients to get a carcinoid diagnosis.  This was a good outcome, despite the NY medical community acting like Parisians and taking the month of August off.

In hindsight, the carcinoid was a better diagnosis than most cancers because 2 years later, with 5 CT scans, a ⁶⁸-GA PET, and 19 Sandostatin LAR shots, I have had no progression or changes in my tumors.  If it had been some other cancer, I could have been dead by now. 

Nonetheless, since August 2010, I have been in what I would call the “cancer loop”. This means that I get scanned at least twice a year and then see the oncologist to find out if there has been tumor progression.  The best outcome that I can have is called progression free survival or PFS.  In between scans I get monthly shots of Sandostatin LAR which is anecdotally shown to slow tumor progression, although there have been no clinical studies to prove this outcome.  The Sandostatin has ended the only symptom I had, which was very occasional (once every 2-3 months) flushing, which never bothered me that much.  The monthly shots and the drug side effects cause me more angst than the flushing ever did.

Alternatives for my situation are surgery to remove the visible tumors or chemotherapy, which does not usually work that well for carcinoid patients.  I could go to Europe to get a radio-nuclear therapy called peptide receptor radionuclide therapy (PRRT). This is known to shrink tumors but not to cure the disease. Steve Jobs and many other Americans had/have PRRT in Europe to treat neuroendocrine tumors because it is not FDA approved in the US yet. 

Given that I continue to be progression free and feel no symptoms, I still question why:

A)     I am getting treated at all?

B)     I am taking Sandostatin when I have no symptoms and the drug has not been proven to slow tumor growth?

C)    I would need a major surgery as has been suggested by Dr. Liu and presumably, my current NY oncologist?

My doctors think my tumors have been there for many years. If they are not bothering me, why should I do something drastic that could make the treatment worse than the disease?  Perhaps if and when there is some symptom or progression I should then consider surgery?  I’ve heard that carcinoid tumors are found in about 1% of autopsies of people who died from something else so perhaps mine were just found early and I might never have a problem or symptom.  Is this just wishful thinking?

This week I am accompanying another carcinoid patient to a surgical consult. She is in a similar, though not identical, situation to mine and has been recommended for surgery. I am hoping to be a good listener and take notes for her. I also hope to learn about what is involved in this sort of surgery.  I want to be better informed as I go through this journey and consider my options.  I feel very lucky that I am meeting so many other people with this rare cancer through the online and local support groups as well as patient conferences.