New York Noids Carcinoid Support Group - Upcoming Luncheon

The above carcinoid support group will be getting together informally with fellow carcinoid patients and medical experts in the field.   We will share our experiences, observations, questions and concerns.  We will learn about recent developments of interest. Attending this discussion will be 3 doctors from Mount Sinai Medical Center as follow:

Dr. Richard Warner, carcinoid expert

Dr. Lynn Ratner, oncologist

Dr. Celia Divino, surgeon

Date:  Sunday January 27, 2013

Time:  12:30 pm

Location:  Carino restaurant, 1710 2^nd Avenue in Manhattan between 88^th and 89^th streets.  Menu can be seen by clicking the link below:

 http://www.menupages.com/restaurants/carino/menu

If you plan to attend, contact Emily Zuckerberg at ezuckerber@aol.com or call 917 689 1980.  Because of space limitations, attendance will be limited to 24 people. There will probably be a waiting list. Patients may invite one guest.  If you reserve and then find that you’re unable to make it, please contact Emily immediately so others can attend.  Please RSVP to Emily by January 20^th so she will have an idea of who/how many people will be attending.

A Happy and Healthy New Year to all and I hope to see some of the New York area patients/caregivers on January 27^th.

Sandostatin LAR – A Real Pain in the Ass

I’ve been taking monthly shots of Sandostatin LAR since January 2011.  That’s 23 times. Over the past 6 months, 3 of the shots have given me Sandostatin lumps, sometimes called hematomas.  By definition, a hematoma is a collection of blood outside of a blood vessel.  In reality it is a bump underneath the skin, it does not show up as a bruise but it feels like a marble under the skin. While it is not painful, it is annoying and bothersome, especially when I sleep on my back or sit in a hard backed chair.  I’m not sure exactly why I am getting the lumps. I suspect that the nurse currently working with me is doing something wrong.  

My first lump was after my July shot and it lasted about 3 months.  My doctor was on vacation when I went in for my August appointment. The substitute doctor said that a hematoma sometimes occurs and that it would probably go away.

Meanwhile, my November shot gave me a bump on the right side and my December shot gave me one on the left side so now I have two annoying/slightly painful bumps.  I have no confidence in this nurse’s ability to give these shots and I’m not sure if there is anyone else in the office that can give them.

I have heard from other patients that hematomas can be reduced by administering the drug slowly and warming it prior to injection.  The lumps could be from the shot being done subcutaneously (just under the skin) and not in the muscle tissue.  I’m not sure if these lumps mean the shot is not working as I have no symptoms.  Perhaps the nurse could get some instruction from Novartis, the maker of the drug.  I’ll bring this up with my doctor next month but I really don’t want to be the “guinea pig” for this nurse’s learning curve.

When I was being treated at Memorial Sloan Kettering Cancer Center (MSKCC), I had a bottom decile doctor but very good nurses.  I had 14 Sandostatin shots at MSKCC and never had a problem with residual pain or lumps.  Now I have a competent doctor but an incompetent nurse.  I’m not sure if there is such a thing as a happy medium where I can trust and communicate effectively with my doctor and get the Sandostatin LAR treatments without a hitch.

I am thinking about using a carcinoid specialist who is not located in the New York area. If I take that approach, I would need an oncologist, not necessarily a carcinoid specialist, who would treat me.  Unfortunately, I’m not sure how exactly to identify this local doctor and I’m concerned about how the shots might go, now that I am having a bad experience with a nurse. 

I don’t really consider myself a difficult patient but after my carcinoid experiences, I’m not sure.  I do expect my doctor to be punctual, articulate and clear about my treatment options. I also expect the nurses and other professionals involved in my care to be competent in administering medication and other treatments.  Is this too much to ask?  Do I need to lower my expectations and live with monthly Sandostatin lumps?

I’ve had the same doctors for over 15 years for dental, primary care and ob/gyn so it’s not like I hire and fire doctors often.  I’d be interested in hearing from anyone in the NYC area who has a great doctor and nurses or who is using a local doctor with a far away specialist.

Sanity Check

This week I went to my primary care physician (PCP) for a physical.  It’s been a while since I had one. I wanted to talk about my cancer situation more than I needed a physical.  I have been going to the same PCP for about 15 years and find him helpful, clear and articulate. 

I explained that I am having trouble finding a doctor who can clearly explain the treatment plans that might be appropriate for treating my disease and how they would affect my quality of life and survival.  Specifically, I am trying to reconcile having a major exploratory abdominal surgery with a watch and wait approach.

In my business, we sometimes use something called SWOT analysis to evaluate opportunities and help make decisions. SWOT stands for strengths, weaknesses, opportunities and threats. 

	Positive Factors	Negative Factors
Internal	Strengths	Weaknesses
External	Opportunities	Threats

In a business situation, looking at all these alternatives can help arrive at a good decision.  I am wondering if it is possible in some way to apply these factors or something similar when making a decision on how to treat my cancer.  Perhaps considering simple pros and cons of the different treatment options would be sufficient.

My PCP is a gastroenterologist and does not have any experience or expertise with neuroendocrine tumors.  He has seen some of my diagnostic test results but not all of my doctors are forwarding information to him.  I explained the following to him, most of which he knew:

At this point I have an unknown primary tumor (which may be in my small intestine or pancreas) and many metastases. Most of these are not in my liver.  Any exploratory surgery would not remove all the tumors but could reduce the tumor burden and might lower my serotonin/5HIAA levels.

The monthly Sandostatin shots have lowered my CgA levels from 25x range to 2x range. But my serotonin/5HIAA levels have not come down; they are still at 5-7 times the normal range.

I have no symptoms and feel excellent.  I used to have very occasional flushing prior to starting Sandostatin treatment.

I have yet to determine if the primary reason for an exploratory surgery is:

1) To remove tumors so I don’t have a bowel obstruction or

2) To lower my serotonin levels so I don’t develop fibrosis

3) Some combination of 1 and 2

 

Despite my high serotonin levels, and the fact that my tumors may have been there for 10-20+ years, I have no symptoms of fibrosis.  Symptoms of fibrosis include diarrhea and heart valve issues.  Not all carcinoid patients get fibrosis – I read an article that said it occurs in approximately 40% of patients¹.

My PCP thought that 40% was not necessarily a high enough percentage to justify an exploratory surgery if the objective was to avoid fibrosis.  If the number were more like 80%, it might be more obvious that I require surgery.  He thought that perhaps I might be in the 60% who might not get fibrosis because I’ve had the tumors for so long and don’t have any associated symptoms. 

My PCP stated that I should definitely shop around until I find a doctor/oncologist that I trust and can communicate with. Ultimately I have to make the decision on the treatment that is right for me. He also reminded me that medicine is not completely science and that there is a lot of judgment involved.  At this point I need more clarity and information before I proceed.  It was a helpful appointment and a good sanity check.

¹ The Oncologist 2008; 13:1264

Scatological Issues and Radiology

On Tuesday November 13^th, I went for a small bowel x-ray series.  The main purpose was to locate my primary tumor. Another reason was to determine if my small intestines were wide enough to swallow a “pill camera”- as is done in a capsule endoscopy.   The test involved swallowing about 16 ounces of a very white, chalky barium compound and then waiting for it to go through the small intestine and into the colon.  Along the way, there are x-rays taken at intervals of between 15-30 minutes. 
 

This is what bothers me about all these perpetual tests and procedures: the process should be explained in advance and not as things go along.  Finally, any possible side effects should be clarified up front.  For example, when I made my appointment for the x-ray series, the receptionist told me it would take “about an hour”.  It took 2 hours and 20 minutes.  The technician who was working with me said that was about normal and sometimes it can take up to 6 hours for the barium compound to travel into the colon.  Not exactly “an hour”.  Meanwhile, I had scheduled a conference call at work for 11:00. My appointment was at 8:30 am, so I thought I had plenty of time.  I missed the call. The radiology location was in a basement so I could not phone or email to inform my office that I would be unavailable. There is no service below ground.  And speaking of side effects, later in the day, I had a bowel movement and it came out completely white!  I gasped as I found this quite shocking!  If someone had made the effort to warn me, I would have been fine with it.

The first time I had a CT scan, my sister in law warned me about the effects of the injected dye.  For those that don’t know what I’m talking about, when dye is injected while you are laying on the CT scan table, it feels like you are urinating in your pants.  The technician refers to this as “you might get a warm feeling”, not that it feels like peeing!  At least I had advance notice on that occasion.

The radiology resident who was doing most of my small bowel x-rays said that they looked normal and that there was no sign of any tumors.  We’ll see what the actual report shows.

Meanwhile, I think my next step is the capsule endoscopy or pill camera.  This test will have me swallowing a “pill size” camera that takes pictures as it goes through my gastrointestinal system.  A few weeks ago, there was a post on the ACOR list about someone doing this test and the camera came out in the toilet still flashing pictures!  At least I have an idea of what I might expect and won’t be surprised if something weird like that happens and no one warns me.  I haven’t scheduled the test yet but I’m guessing it will take about an hour…

Hurricane Sandy Aftermath

It took us 8 days to fully recover power, heat, hot water, and cell/ land line service. For two days there was no water of any kind. We live on the 6th floor of a high rise building and had to go up and down dark stairs armed only with flashlights. We are most fortunate that we did not suffer an emergency. Our apartment was cold and dark and loads of blankets didn’t help much. Our two cats were scared and confused. They know when something serious is taking place. This has been quite an education on what is important in life. 

On Friday, we got the electric back but still had no hot water or heat.  Thankfully, I must be in pretty good shape as I went up/down the 6 flights of stairs with cat food, groceries, a space heater and other necessities about 6 times on Saturday.  On Sunday, the elevators were back and Monday saw the restoration of heat and hot water. It was great to take a hot shower! Finally, internet and cable service returned yesterday. We are officially back to normal.

In business school, we learned a theory called Maslow’s  hierarchy of needs. The hierarchy is a pyramid that starts with basic necessities such as food, water and shelter and ends with self-actualization, which is autonomy and achievement as the highest level.  During the past week, I moved to the bottom of the pyramid as did most of my friends, colleagues and family that lived in the tri-state area. 

I went to work after the office was closed for 2 days (and was happy to be there since work had all the “luxuries” we didn’t have at home). It was still hard to concentrate. I was thinking of things I need to get in order to survive and make the home situation as comfortable as possible.  I had to walk to work since mass transit was not running. We quickly ran out of food, water and batteries as the week wore on.  I was able to get “amenities” at stores near my office - but then had to walk back home with gallon bottles of water and other heavy things and to haul it all up 6 flights of stairs with a flashlight! The so-called emergency lights in our stairwells were out all week!  Batteries were a scarce commodity and even now, I don’t think that there are any D batteries on the island of Manhattan!  On Thursday, I went to at least 6 drugstores looking for votive candles and finally found them at a 99 cent store near my office.

There are still many people who had a much worse time than we did – those that lost their homes, livelihoods, friends and relatives.  Even in our community, some apartments still have no power or heat and I feel quite sorry for what they are going through.

During the past week, I did not really think about my cancer, treatment choices or anything related to my health – just tried to get through the day and take care of the basics.  I rescheduled my small bowel x-ray series but have not spent any time looking things up, reading the posts on the ACOR list or dwelling on my situation.  It’s been quite refreshing to forget about all this cancer stuff for a week. 

Now that I am moving up on the hierarchy of needs again, I have my monthly Sandostatin shot as well as the small bowel x-ray series scheduled for next week.  I am meeting with my primary care physician after Thanksgiving to discuss my situation and choices as it relates to my cancer treatment – hopefully he will give me some perspective on the choices I face.

This morning the temperature plunged to 38 degrees. We are expecting a big Nor’easter today – I hope the power system and infrastructure here in NYC can deal with another storm. A lot of us are holding our breath!

Hurricane Sandy

Wow, it was really damaging here.  I live below 40th Street on the East side of Manhattan and we have no power, cell phone, internet, or landline service.  They say we will not have anything until the weekend, maybe!  My office, however, in midtown has full power and services so I expect to be there a lot this week.

Below are some pictures:



Williamsburg Bridge between Brooklyn and Manhattan

  Unfortunately, I live on the Manhattan (dark) side of this bridge.  Brooklyn is all alight with power.



La Guardia Airport

 Above is La Guardia Airport - still flooded and not sure when it will reopen.  I'm glad I'm not flying this week.  They have not cancelled the New York marathon for Sunday but I'm guessing a lot of runners will not get here.

Downtown NYC Subway Station

The above photo is a subway station in downtown NYC.  They have not reopened the subway but I think tomorrow there will be service above 34th street in Manhattan. 

I'm happy to be safe but I think the no power thing could wear on me soon.  The only hospitals in Manhattan that are working well are NY Presbyterian and Mount Sinai.  Some of the big hospitals like Bellevue,  New York University Medical Center and Beth Israel were evacuated when the power went out and the generators were flooded. 

Many people are much worse off than I am - especially in NJ.

That's it from NYC!

Insurance Woes -- and an update

Throughout my cancer experience my doctor or hospital system has submitted my insurance claims.  I am quite lucky that I have very good coverage through my employer. Owen also has good healthcare so I use his plan as my secondary coverage.  After my visit to Dr. Warner last week, I submitted the bill to my primary insurer, Aetna.  (Dr. Warner does not take any insurance).  Today I received a rejection of my claim. I’m not sure if it is because of the procedure code or an issue with my secondary coverage.  I called Aetna to ask but they are closed on weekends.  Now I have to call from work to figure out the problem. I usually work 50-70 hours a week so it is hard to find time to remember to deal with insurance issues.  I realize now how lucky I am that my doctors have been handling this for me.

I am scheduled to have a small bowel x-ray series on Monday morning.  Monday is also the day that we are supposed to be hit by hurricane Sandy.  I wonder if that is an omen about doing all these diagnostic tests!  I hope I can just get the test done - or if they are going to cancel the appointment, that they give me a few hours notice. 

That’s all I have to report this week.  I’m planning to go out and get some extra water and batteries in case we lose power.

Update as of Monday afternoon:  Last night, the radiology group called to cancel my small bowel x-rays in plenty of time, thank goodness.  I called Aetna and they said that they did not process the claim properly and will resubmit it and I should get payment within a week or so.  The hurricane still has not hit here in NYC but it is quite windy.  One of my friends in NJ had to be evacuated.  As of now, the power is still on and things are ok.  My office was closed today and will be tomorrow as well.  I'm hoping all goes well as the worst is yet to come. 

More Medical Advice

“I do not despair of carcinoma being cured somewhere in the future, but this blessed achievement will, I believe, never be wrought by the knife of a surgeon” – Siddhartha Mukherjee - The Emperor of All Maladies

On Tuesday, I had an appointment with Dr. Warner to discuss my treatment options. Once again, he emphatically stated that I needed to have surgery.  His analogy (one of several he offered) was that ”I was sitting in the living room watching television while the house was on fire”.  Like  Dr. Liu, he said it was best to do the surgery while I was still healthy.   I still need to do some diagnostic testing before anyone will even begin to tell me exactly what the surgery will encompass. 

I was talking to one of my carcinoid buddies who is going through a similar situation in determining her need for surgery.  She went to a carcinoid specialist who told her she did not need an operation. That doc’s analogy was it would be “like killing the one cockroach you see in your kitchen but leaving the thousands of others to remain and continue to reproduce”. 

I guess doctors like to use analogies to articulate the rationale for their opinions. 

Dr. Warner asked why I had seen so many doctors. He stated that it would be easier if I settled on one so all the tests and procedures could be done in one place, in an integrated way.  I explained that my first doctor was entirely inappropriate, primarily due to his attitude. He was fine with Sandostatin and a “watch and wait” plan, but his arrogance and inability to communicate effectively with me ruined our working relationship.    I then went to Dr. Warner for an opinion and he sent me to Dr. Ratner, who works with him. I traveled to Tennessee to see Dr. Liu because that was where I could get the 68-Ga scan, which was unavailable locally. Dr. Liu also believed surgery was necessary.  Finally, I had a written opinion compiled entirely from my records.  This is from an organization called Best Doctors, offered as part of my healthcare benefits at work.  This particular opinion was from Dr. Edward Wolin in Los Angeles.  He did not think I needed surgery as long as I was stable on Sandostatin.   It’s not like I enjoy going to all these doctors but there seems to be some difference of opinion as to how I should be treated.  I told Dr. Warner that I need to gain some trust with a doctor before I do something as major as an exploratory surgery.  He seemed to understand that and said we should take this one step at a time. 

Personally, I have a fear of a big abdominal surgery due to the relatively recent death of a close relative from sepsis - 30 hours after a bowel resection for a non-life threatening condition.  

I will continue to work with Dr. Warner and Dr. Ratner on the diagnostics needed to determine the best treatment for me. The psychological issues and fear of death/collateral damage as consequences of an extensive abdominal surgery are big hurdles to overcome.  Stay tuned.

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.