Lynn M. Guidici

My friend and fellow carcinoid patient, Lynn Guidici, died last Friday.  She was 59.  I met Lynn in 2012 through the ACOR message board. We both lived in the New York area and had seen some of the same doctors.  Lynn was the first carcinoid patient that I met in person.  She was diagnosed in 2006 and I was a relative “newbie” in 2012.  Nonetheless, we were in similar situations in thinking about debulking surgery, what our next step should be and if we really trusted our doctors.  We met over coffee and hit it off immediately, talking and laughing about life, cancer, doctors and poop.  We talked and met up regularly to catch up on things.  She had a debulking surgery in early 2013 and I went next in September.  She never fully recovered from the surgery and continued to struggle with eating and weight loss issues.  She went on to have a liver embolization and remained in declining health.  I continued to see her, going to Westchester where she lived so she would not have to travel into the city. I last saw her a few weeks ago at her home and knew that this would be my last visit. 

Lynn was a warm and caring person who was so proud of her daughter Anabel, who just graduated from high school and will be attending college in the fall. Perhaps going away to college will help her deal with the death of her mother. Lynn's husband Bill survives her as well.

I feel quite upset, even though it was clear that Lynn was doing poorly.  Knowing someone who has the same disease is an amazing experience because they have the same hopes, fears and symptoms, making them closer to you than most other people.  Seeing Lynn die brings my own mortality up front and personal which is very scary as well. 

Rest in peace Lynn, you were a great friend and confidante.  

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:

http://www.newyorker.com/online/blogs/elements/2014/07/cancer-chats.html

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.  

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.”

http://well.blogs.nytimes.com/2014/06/05/living-with-cancer-chronic-not-cured/?_php=true&_type=blogs&ref=health&_r=0

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.

The Cost of the Emergency Room

When I was in the emergency room at New York Presbyterian on April 15^th -16^th, 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 17^th, 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 15^th:

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.

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:

http://www.theatlantic.com/entertainment/archive/2014/05/cancer-comic/370949/

 

 

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!