Sunday, July 20, 2014

How to Tell Someone She is Dying

There is an interesting article with the above title in “The New Yorker” about doctor-patient relationships. It concerns how to get a patient who is in denial or uncomfortable with a certain treatment, in this case chemotherapy, to consider the alternatives.  As a cancer patient, I want to feel in control of my options. Not being a medical expert, I don’t know the pros and cons of different treatments.  I need to rely on my doctors to give me their opinion on what I should do but also the rationale for that course of action.  This was not always the way patients were treated. The article states in part:

“As recently as the nineteen-seventies, medical decision-making in the United States was largely a doctor-knows-best endeavor. Physicians dictated clinical care without feeling compelled to tell patients about their treatment alternatives. Frequently, in fact, they did not even inform patients of their diagnoses.

Medical practice has since undergone a paradigm shift. Physicians now recognize that patients not only have both the right to information but also the right to refuse medical care. Yet doctors are rarely taught how to partner effectively with patients in making important medical decisions. There is a need for a balance between helping patients make wise choices and respecting their rights to refuse medical interventions.

This raises a fundamental question about the doctor-patient relationship: Is modern medical practice all about 'patient knows best’?  Or do physicians still need, on occasion, to cajole their patients into doing the right thing?

Most well-trained physicians believe that it would be a dereliction of their duties to act merely as information providers, standing aside while patients make bad decisions. Experience provides them with an important perspective to guide treatment decisions. Yet a purely medical perspective can cause physicians to lose themselves in details and lose sight of the more human element of patient care such as whether the chemotherapy that shrank the tumor would improve the patient’s quality of life.”

Only a patient can determine the balance they prefer between the quantity and quality of life they want.  As cancer treatment becomes more advanced, options can become less clear in their ability to produce a high quality life.  I would hope that my doctor would understand my preferences and give me the best option to keep my quality of life - even if that means no treatment or palliative care instead of intensive medical therapies that would cause harm.

The link to the article is below:

Friday, June 20, 2014

Coming Out of the Cancer Closet

For many reasons, most importantly my health, I have decided to retire from my crazy, extremely full-time financial services career.  I have been in the financial services industry for 33 years, longer than most people I know.  My primary reason for leaving is that my health has not been that great since my September debulking surgery.  I was doing fine up until the time I went back to work in December.  For the past nearly six months, I have had many gastrointestinal issues including heartburn, diarrhea, nausea, vomiting, abdominal cramping and 3 partial or full bowel obstructions.  I have also been much more fatigued since the surgery.  Prior to my surgery, my health problems were much less onerous.   I believe the reason for these post-surgical issues were:

1) The debulking surgery left me with a shorter small intestine. 

2) A very stressful job that required me to see clients and go to meetings that could last 6 hours. Travel only made things worse.

 In addition, I was having trouble eating frequent meals of soft foods or sometimes any foods at all due to fear of symptoms at work.  I thought I was fine and went back to eating a normal but not extremely healthy diet.  My job required me to dine and entertain clients and other business prospects. Sometimes I ate and drank at locations that I knew would not help my digestive symptoms.  Traveling to and from client meetings was also challenging as trains, planes and automobiles don’t always provide convenient food choices and bathrooms. 

My full bowel obstruction and emergency room experience in mid-April was the straw that broke the camel’s back.  After that, I believed that I needed to make some serious changes to my lifestyle, including paying very close attention to my diet, sleep, health issues and stress levels.  Deciding to retire meant I had to think about my financial situation as we would have less money coming in.  I would also need to figure out what to do with my free time, although I can definitely look forward to being less busy.  I would also have to figure out how to notify my employer and transition my clients.

Since my diagnosis in 2010, I had not told my employer I have cancer.  Even when I had my debulking surgery last September, I told my boss I was having a gastrointestinal surgery and that I would need monthly follow-up afterward.  He didn’t ask for any details and for those who did, I said I was having part of my small intestine removed to avoid having a bowel obstruction but did not give any other information. My rationale for not playing the “cancer card” was that the financial services industry is very competitive with an “eat what you kill” type work environment. I did not want to be perceived as sick, as that would probably cause some discrimination in the workplace. 

So, imagine my boss’s surprise last Monday when I said that I was leaving because of health issues and that I have a rare form of gastrointestinal cancer.  He was shocked and sympathetic and said that he would do everything possible to transition my clients and help me to avoid any stress with the transition.  I am working through a transition plan and will be available to help, working from home as necessary, for the foreseeable future but will not be going to work.  I spoke with some of my co-workers, who were also shocked that I could keep my cancer secret for so long but very supportive.  One of my co-workers said one of my clients cried when she heard I would be leaving for health reasons. 

I have been retired now for over a week and am enjoying myself immensely.  I am sleeping at least 8 hours a night which is something I had not done for regularly for a long time.  I am focusing on eating 4-5 small meals a day instead of rushing through meals and snacks at my desk or on the road.  I have been making home cooked meals. Yesterday, I made a big pot of chicken soup with wild rice and vegetables.  I have enough soup to eat it once a day for the rest of next week.  I’m already feeling better.  

Monday, June 9, 2014

Chronic, Not Cured

Susan Gubar, a cancer patient and outstanding communicator, writes a column in The New York Times, called Living with Cancer.  This week’s column talks about patients who do not fall into the category of cured or terminal. Since most of us neuroendocrine patients fall into the “chronic” category, I thought this was an interesting article.  Some of Ms. Gubar’s thoughts as well as the link to the article follow.

“The word ‘chronic’ resides between the category of cured and the category of terminal. It refers to disease that is not spreading, malignancy that can be arrested but not eradicated.”
“But for some of us, there is a middle stage in this journey. Because of advances in cancer research and the efforts of dedicated oncologists, a large population today deals with disease kept in abeyance. The cancer has returned and has been controlled, but it will never go away completely. Like me, these people cope with cancer that is treatable for some unforeseeable amount of time. Chronic cancer means you will die from it — unless you are first hit by the proverbial bus — but not now, not necessarily soon.”

“Chronic disease may lack the drama of diagnosis and early treatment; even friends can get bored by mounting details. Its evolution does not conform to the feel-good stories of recovery that most of us want to read. But neither does it adhere to the frightfully degenerative plot of quickly advancing tumors.”

Saturday, May 31, 2014

NETest Results

Last week I got my NETest results from Nancy Texiera.  My results were a level 3, which is in the low activity range of 1-4.  She explained that this a typical result for someone who has residual disease after surgery.  I have not seen the report yet but Nancy said she would send it when it is done.  She encouraged me and my fellow NY noids to come back up for our second test and she would have lunch for us.  If we do this at around the 90 day mark, that would be mid-end of July.  I wasn't sure what to expect from this test but the 3 makes sense to me given my situation.

Friday, May 30, 2014

The Cost of the Emergency Room

When I was in the emergency room at New York Presbyterian on April 15th -16th, I saw a few doctors, one of which was a surgeon named Dr. Kumar (not his real name). This doctor was the boss of all those pesky surgical residents who were so anxious to operate on my bowel.  I saw him just before he discharged me. On April 17th, there was a bill in my mailbox from Dr. Kumar for $550.  I threw it away thinking that this would be submitted to my insurance since he saw me in the emergency room.  Aetna, my medical insurance provider paid the following amounts for my overnight stay in the emergency room hallway on April 15th:

New York Presbyterian Hospital:  $13,095
Dr. Yong Ho Auh, radiologist:       $181
Dr. Elisa Aponte, ER physician:    $165

Total payments:                            $13,441

For whatever reason, Dr. Kumar's bill was sent to me separately.  I received another bill today in the mail stating that my account is past due and to avoid further collection activities, to remit payment in full.  Not to be a b*tch, but if a doctor sees a patient in the emergency room, shouldn’t his payment be part of that overall bill?  If not, shouldn’t he have asked me for my insurance information - like any other doctor would before he saw me?  Why should my credit be at risk for this obnoxious doctor behavior?  The only way for me to take care of this is to call their toll free billing number and sit on hold to get it straightened out.  Grrrr….like I have time to fight with the doctor over the bill while I am working 50+ hours a week and battling cancer! 

I probably should not have been, but I was shocked by the cost of this emergency room visit.  Considering that I did not even have a room, IV pole, nurse call button, privacy curtain, TV, pillow or bathroom, I find this kind of pricey.  On top of that wonderful experience, I now have to deal with Dr. Kumar’s billing issues.

Sunday, May 18, 2014

Updates and Interesting Article

Follow Up on Bowel Obstruction

I haven’t posted for almost a month.  I’ve been quite busy at work and with other non-cancer related activities.  I had an appointment last week with Nina, my nurse practitioner at Dana Farber, who explained what was happening with the bowel obstruction and what I might do about it.  The bowel obstruction occurred where the small intestine was resected during my surgery. The medical term is ileal anastomosis. She explained that ileal anastomosis is the area where the bowel was sewn together after the 100 cm was removed.  This area of the bowel is narrower than the rest of my small intestine because of the fusing together of the two pieces. There could also be some scar tissue or adhesions.  She said that this was not bowel ischemia or small intestinal bowel overgrowth.  The problem is due to the bowel resection surgery.  Nina suggested smaller meals, soft foods and chewing thoroughly.  I asked about determining when I need to go to the emergency room versus waiting it out. She said that it is ok to wait for perhaps 4-5 hours at home if I am not vomiting.  I should not eat or drink anything until it clears.  If it hasn’t cleared in that time, I should go to the emergency room to get intravenous fluids to avoid dehydration.  I asked about taking fish oil or massaging the abdominal area to help avoid another obstruction. Nina said that these things have not been proven to help but they won’t do any harm so go ahead if I want to try it.  The only way to “fix” this is to have another open surgery to resect the bowel again which will/might cause more scar tissue/adhesions.  That definitely does not sound like a good solution and I would only go that route if it were a life or death situation.  I’m hoping that it doesn’t happen again.
No Update on NETest

I have not received my NETest results yet.  I surveyed my fellow New York noids who went with me to get the test and one of them has received the results.  I’m guessing that they are ready and I will have an update next week after Nancy Texeira contacts me and sends the test results.
Two Year Anniversary of Beth’s Adventures with Cancer

This week is the two year anniversary of this blog.  Last year I hit 10,000 pageviews exactly on my one year anniversary.  Now I have close to 60,000 pageviews but I think some of them are spam.  I started getting spam comments right around the time of the winter Olympics. Many  of the spam posts came from the UK and France, not a usual source of my readers who are mostly US based. I don’t have a clue as to any Olympic connection. These seem to have lessened now and I think most viewers are people who are actually reading the blog. 
Since last year, I had the big bowel resection surgery and have had a rough recovery.  Eight months out from surgery I am definitely not back to normal.  I am at a new normal with a completely different metabolism and many gastrointestinal problems.  From an oncological standpoint, I am better with lower tumor markers and less tumor bulk but my quality of life has taken a big hit.  I haven’t decided if I am better off or not.

Interesting Article in “The Atlantic”
Finally, there is an interesting article in The Atlantic magazine called “Cancer Treatment as Comic Book”:  “Matt Freedman scrawled the pages of Relatively Indolent but Relentless as he underwent radiation therapy, with engrossing, surprisingly funny results.”  I have not read this book which is a journal with hand drawn comics about his cancer treatment.  It sounds interesting and I could relate to some of the comics that were in The Atlantic article. The link to the article is below along with two of the comics that I liked:


I can relate to both of these, particularly “two good years” comic.  I’ll have to read this book when I get some time. 
That’s it from me for now.  I think I’ll go outside and enjoy the nice sunny weather!



Tuesday, April 22, 2014

Small Bowel Obstruction

Last Monday night, I started having pain similar to the bowel kink or obstruction I may have had in February.  I started vomiting around 3:00 am on Tuesday morning and felt awful by the time I needed to get up for work.  At my appointment in February, my doctor said next time it happens, go get a kidney, ureter, bowel (KUB) x-ray.  At 8:00 am on Tuesday morning I went into City MD, an urgent care facility. They took me in right away and after getting a short medical history, x-rayed me.  While I was waiting for the technicians to get set up, I vomited again.  After it was done, the doctor said that I needed to go to the emergency room.  He sent me off with a note saying small bowel obstruction and a CD with the x-ray.  I went to New York Presbyterian (NYP) Hospital, which is where my primary care physician is affiliated.  I got checked in and filled out the paperwork by mid-morning on Tuesday.

I have not been in an emergency room for a problem since I was 12 years old and fell off a fence and broke my arm. I was stunned by the ER at NYP Hospital.  It was so crowded that the patient areas were all full and patients were lined up on beds in the hallways, basically head to foot on gurneys.  My gurney was in the hallway, where they drew blood and put in an IV with a saline drip and asked me more questions.  I was still having a lot of abdominal pain.  They poked around my abdomen and thought that I might have appendicitis since I was feeling more pain on the right side.  In addition, my white blood cell count was 17.9 (10 is the top of the range). They also took a urine sample.  Next was a CT scan of the abdomen and pelvis.  It took about 3 hours to get in to have the scan and another hour or so after that to get the results.  By this time it was mid-afternoon and I was feeling a little better.  The CT scan showed a high grade small bowel obstruction.  At least I didn’t have appendicitis!  They assigned me to a surgical team, which scared me to death.   I did not want another operation.  The surgical team consisted of about 5 surgical residents who told me that I would not be discharged until the obstruction cleared and I passed gas.  They said that they would put in a NG tube if I was vomiting and would need to do an emergency surgery should the obstruction not clear.  They seemed very interested in doing this surgery, a bit overenthusiastic in my opinion.   I’m positive none of them had ever seen a carcinoid cancer patient.   I suggested that perhaps I could go home and come back if I felt worse but they were having none of that.  Meanwhile the hospital was full and there were no beds to admit me to so I was stuck in the hallway on a gurney for the night.  I was miserable and uncomfortable. There were too many patients, I had no privacy and there was one bathroom for about 30 people, most of whom were quite ill.  The ER was short of everything – no pillows, no blankets, and no IV poles, I couldn’t even watch TV, since I was stuck in a hallway.  The ER is way in the back of an old hospital so there was very sporadic cell phone service.  If I wanted to go to the bathroom, I had to carry my IV bag since there was no pole!  Meanwhile I passed gas at around 11:00 pm so I knew that I was out of the woods on the bowel obstruction and on my way to getting better.  In the morning, the surgical residents came back again, said my abdomen felt nice and soft and if I could keep a liquid breakfast down, I could go home.  They did another round of blood tests and my white cell count was down to 6.2 – perfectly normal.  They came back around 11:30 am to check again and to put together the discharge.  It took another 3 hours to get it all together and release me.  I was home around 3:00 pm on Wednesday.  What a nightmare!

I asked one of the nurses why it was so crowded and there were no rooms available in the hospital.  She said that because it was the first 2 days of Passover, many of the Jewish doctors were off and told their patients to go to the ER if they had a medical problem.  Note to self: never get sick on Passover!

Needless to say, I am very uncomfortable with how my bowel is healing after this surgery.  I’m not sure what to do to avoid these types of obstructions and I definitely don’t want another surgery.  In hindsight, I probably would have been fine not going to the ER as the obstruction cleared up on its own.  At least my doctors now have the KUB and CT scan to evaluate my situation.  I’ll see what they suggest when I go for my next appointment in early May. Given this ER experience, I would definitely want to wait it out if it happened again. 

Meanwhile, I felt that the emergency room was a very good example of what is wrong with the medical system in America.  Not only was it overcrowded and understaffed, it did not even have enough supplies or bathrooms to handle the crowd.  Most of the patients were very old – I guess that’s typical for any hospital.  One woman was at least 90 years old and was complaining constantly and loudly.  She was not upset about her medical condition - mostly she wanted her glasses or her bag or where was lunch?  The patient next to her said that she had kept her up all night with the noise. I asked a staff member what her story was and they said that her home health care aide quit and that was why she was in the ER!  That is crazy!  The place is overcrowded with patients - eldercare needs to be handled somewhere else!  Another patient came in around 1:00 am as I was still sitting on my gurney in the hallway.  She was at least 90+ years old and was presenting with pneumonia.  Her son, who was of Medicare age himself was with her.  She had been transferred from her nursing home to the ER.  The doctor was trying to get some medical information and to put in an IV and she was screaming, kicking, spitting and telling him that she wanted to die and to leave her alone!  Her son was yelling at her and telling her the doctor was trying to help her.  This went on for about a half an hour.  It’s amazing to me that you can’t die when you are in your 90’s and close to death anyway. A much younger man came in early on Wednesday morning. He reminded me of kids in their 20’s who don’t believe they need insurance because they will never be sick. He was presenting with something called Exertional Rhabdomyolysis, which is kidney damage from excess exercising.  He had taken a class called “soulcycle” and the doctor that was treating him said he treats this condition about 20x a month.  The man had never heard of it and thought that there should be some sort of public education about the risks of excessive exercising.  He was admitted right about the time I was getting discharged. An old man across from me was 83 and had fallen and broken his hip and was on his way to a hip replacement surgery – his medical history was quite long but the most interesting thing I heard was that he had an 11 year old daughter – how crazy is that?  There is absolutely no privacy for anyone when you are sitting in the hallway listening to patients that are sitting 3-5 feet away from you!  Amazing.  I hope I never have to go to the ER again!