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.