Sunday, September 14, 2014

Long Time No Update

It’s been a while since I last updated my blog.  I guess there is not too much going on in my cancer life – everything is reasonably stable.  I am scheduled for scans, 5-HIAA and other tests in early October and I’m hoping I’m still stable.  Last month I marked the 4 year anniversary of my diagnosis.   This coming week marks the one year anniversary of my de-bulking surgery.  A few days ago, this blog reached its 100,000th pageview!  These are some serious milestones.

I am feeling less stressed out since my retirement a few months ago.  I thought that stopping work would help my bowel issues tremendously but it has only helped incrementally.  I still need to be near a restroom and every day is an adventure as to bowel frequency, consistency and color.  I do have some days where I only have one  bowel movement and this makes me reminisce about my pre-surgery days.  

My second NETest showed an increase from  in my score from 3 to 4.  The range of scores is 1-8 and 1-4 is considered low or “residual disease”.  I still have one test to go in a few months and I hope it remains in the same range.

I am doing a better job on eating appropriately now that I am not working.  I don’t digest fat very well so I take CREON, a pancreatic enzyme 3x a day.  My doctor told me that I should eat more soluble fiber and take metamucil or benefiber daily.   Soluble fiber attracts water and forms a gel, which slows down digestion and can help stop diarrhea. Sources of soluble fiber include oatmeal, oat cereal, lentils, apples, oranges, pears, oat bran, strawberries, nuts, flaxseeds, beans, dried peas, blueberries, psyllium, cucumbers, celery, and carrots.  Since I have been eating more soluble fiber, my bowel movements have improved but are still not “normal”.  I have also been eating 4 smaller meals a day and trying to eat softer foods.  

Some of the foods that work for me are below:
  • eggs (scrambled, soft/hard boiled, omelettes, deviled or egg salad-with light mayonnaise!
  • roasted turkey or grilled/rotisserie chicken
  • any grilled, baked or broiled fish
  • tuna fish sandwiches made with light mayonnaise - sometimes with reduced fat cheese for a tuna melt
  • soups that are not cream based - I try to make my own soups rather than eating canned.
  • creamy peanut butter and jelly/marshmallow fluff/fig butter (pick one) sandwiches
  • crackers with laughing cow light or other low-fat cheese
  • fat free feta cheese in my omelette or on my (small) salad
  • greek yogurt

I stay away from celery, corn, nuts, seed and popcorn. I don't intentionally put these into anything I eat. When I make a salad, I chop it up into small pieces and chew thoroughly.  I’m sure that eating better and more frequently plus the reduction of stress in my life has helped with the slight improvement in symptoms.  I’ve also not had another full bowel obstruction since my emergency room visit in April.  I did have a “bowel kink” or perhaps a partial obstruction in July but it cleared before I needed to see a doctor or go to the ER. 

Finally, I read an interesting article in “The New Yorker” titled “The Transformation  Is it possible to control cancer without killing it?”  It’s about the new treatments that are being tested and used now. The intent is not to cure cancer, but to keep patients alive with a higher quality of life for longer.  The link is below:



Saturday, August 16, 2014

My Husband, Owen McGivern, is Raising Funds for Neuroendocrine Cancer Research

On Sunday, September 21, my husband Owen will be raising funds to support the neuroendocrine tumor program (NET) at Dana Farber Cancer Institute. As one of more than 8,500 anticipated participants, he’s pledged to raise funds that will be used to support critical cancer research and innovative care for this rare cancer at Dana-Farber Cancer Institute. I'm writing to you today to ask for your support.

Owen will be on the Caring for Carcinoid/Walking with Jane and Anne Team, http://www.jimmyfundwalk.org/faf/search/searchTeamPart.asp?ievent=1086390&team=5839056, participating as a virtual walker.  Harry Proudfoot is the team leader.  He can be reached at walkingwithjane@gmail.com

Please feel free to join the team if you would like to walk at this event or join as a virtual walker to raise funds for research and cures.  If you join the team, you will get a team t-shirt.  The design is shown below. 

Front of Team T-Shirt
Back of Team T-Shirt


Please join Owen in the fight against cancer by considering a contribution of $26.20 or more toward his fundraising efforts.

It's easy to have an impact on this important and universal cause. You can:
- Make a gift online: Visit the Walk website at www.JimmyFundWalk.org and click "Give." Search for Owen's name and follow the instructions on his fundraising page to make a gift online, or go to Owen's fundraising page at http://www.jimmyfundwalk.org/2014/owen_mcgivern.

- Send in a check: Write a check payable to "Jimmy Fund Walk" and send it to
Walking with Jane, PO Box 9721, Fall River, MA 02723.  Please put Owen McGivern, in the memo section of the check. 

Thank you in advance for your generosity!

Beth and Owen McGivern


Saturday, August 9, 2014

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.  

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.