Friday, January 17, 2014

Controversial Dual Editorials about Cancer Care

Last week, Emma and Bill Keller, both writers, she for Britain’s The Guardian and he for The New York Times, wrote editorials for their respective papers about how much detail one should divulge publicly when dying of cancer. Ms. Keller’s op-ed was published on January 8th and it was titled “Forget funeral selfies. What are the ethics of tweeting a terminal illness?”  She specifically describes the blog and tweets of Lisa Bonchek Adams, a 44 year old stage 4 cancer patient who is married with 3 children and is writing an “unsparing narrative” of her cancer treatments and journey towards death. Some excerpts from the editorial follow:

“Adams is dying out loud”
“As her condition declined, her tweets amped up both in frequency and intensity. I couldn't stop reading…but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?”
“She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate "team", but there is no mention of the cost.”
The snarky tone of this editorial generated a lot of outraged response in The Guardian.  In addition, Emma Keller has had email and twitter communications with Lisa Bonchek Adams but did not disclose to her that she would be using the content of those communications in an article.  Because of this journalistic transgression, The Guardian withdrew her editorial from the website.  Below is an archived copy of the piece:
Because of the outrage and in defense of his wife’s editorial, Bill Keller penned an op-ed in The New York Times on Monday January 13 called “Heroic Measures”.  This editorial is not quite as critical as Emma’s but also generated quite of lot of outrage.  At least the NYT did not remove it from their website.  Here are a few points from Mr. Keller’s editorial:
“A rapt audience of several thousand follows her unsparing narrative of mastectomy, chemotherapy, radiation, biopsies and scans, pumps and drains and catheters, grueling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby, poetry and resolute calls to “persevere.”
“In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America."
“Lisa Adams’s choice is in a sense the opposite. Her aim was to buy as much time as possible to watch her three children grow up. So she is all about heroic measures.”
“The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her. Her relationship with the hospital provides her with intensive, premium medical care, including not just constant maintenance and aggressive treatment but such Sloan-Kettering amenities as the Caring Canines program, in which patients get a playful cuddle with visiting dogs.”
“In any case, I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance. That is entirely her choice, and deserving of our respect."
Below is a link to Bill Keller’s editorial:
I found these two editorials quite interesting.  Aside from the controversy and publicity that this writing generated, they raise important questions about privacy, discussion of death, whether cancer is a battle or a disease, the cost of treatment and how hospitals might benefit from patients who are in the public domain.  Amy Bonchek Adams had to know that these two writers were going to write about her cancer, blog and tweets because they were both communicating with her prior to the publication of these pieces.   I was uncomfortable with the tone of Emma Keller’s editorial but not so much with Bill's attempt at clarification.  I do not believe that blogging and tweeting about cancer is “too much information (TMI)”.  If one doesn’t want to read it, they don’t have to. It’s up to the patient to decide if she/he wants to fight with debilitating treatments until they die or if they want to die quietly without them.  I have been impressed with the NYT’s bringing articles to the forefront on many facets of cancer, sometimes quite prominently.  These conversations need to be more public.

Thursday, January 16, 2014

First Post-Surgical CT Scan

Yesterday I had my first post-surgical CT scan.  This is described on the report as a “restaging” scan.  Dr. Chan showed me the before and after scans. There are a lot fewer white areas or tumors now.  The only impression that was in the report was “mild associated mesenteric fat stranding and nodularity is noted, likely postsurgical in etiology”.  Dr. Chan said this is because I have not fully healed from the surgery as it was only 4 months ago.  I’m not really sure exactly what “fat stranding” is and after googling it, I’m still in the dark.  As long as the doctor is not too concerned, neither am I.  The remaining few small tumors in my liver stayed unchanged. 

I am mostly recovered from my surgery but I still do have some lingering gastrointestinal stress.  This can manifest itself in very bad gas pains, both in my chest and abdominal area.  I have not identified a particular food or time of day that could be the cause of this discomfort.  Sometime it lasts for 5-6 hours before going away.  I occasionally have massive diarrhea, similar to a colonoscopy prep that is quite disruptive and disturbing.   I had this twice in December. I know the first time was because I ate too much fatty food, but the other time I did not so couldn’t identify the cause.  I have not had the really bad diarrhea in January yet so hopefully that problem has passed.   Dr. Chan suggested I try Prilosec this month to see if it alleviates the gas problem. 
All in all, I’m doing ok and today marks my new CT baseline. 

Sunday, January 5, 2014

Why Everyone Seems to Have Cancer

This is the headline article (Op-Ed) in today’s Sunday Review section of The New York Times (NYT).  It is written by a former NYT reporter and author of a book called The Cancer Chronicles that was well reviewed a few months ago.  I have not read the book.  The author discusses why heart disease deaths have declined substantially from 38 deaths per 10,000 people in 1958 to 18 deaths per 10,000 people in 2010. Concurrently, cancer deaths at 19 per 10,000 in 1958 have only declined to 17 per 10,000 in 2010.  The basic premise of the article is that “heart disease and cancer are primarily diseases of aging.  Fewer people succumbing to one means more people living long enough to die from the other”.  He explains that deaths from heart disease have declined due to “diet, exercise and medicines for blood pressure and cholesterol.  When problems arise, they can often be treated as mechanical problems – clogged piping, worn-out valves – for which there may be a temporary fix”. “Because of these interventions, people between the ages of 55 and 84 are increasingly likely to die from cancer than heart disease.  The increase in longevity has been why the statistics show more cancer deaths.  “A century ago, average life expectancy was in the low to mid-50’s.  Now it is almost 79. The median age of cancer death is 72”.  There is a very interesting graphic that illustrates these statistics – it is in the link below:

The author is pessimistic about a cure for cancer. “It is not so much a disease as a phenomenon, the result of a basic evolutionary compromise. As a body lives and grows, its cells are constantly dividing, copying their DNA — this vast genetic library — and bequeathing it to the daughter cells. They in turn pass it to their own progeny: copies of copies of copies. Along the way, errors inevitably occur. Some are caused by carcinogens but most are random misprints.”   He says that most of the improvement in cancer longevity statistics comes from prevention and from improvements in mortality from childhood cancers.  The author goes on to say “for most cancers the only identifiable cause is entropy, the random genetic mutations that are an inevitable part of multicellular life.” 

The full article is in the link below:
This is a realistic article that does not give false hope about an imminent cure for cancer.  Interesting reading.

Sunday, December 22, 2013

It’s Off to Work I Go!

I went back to work last Tuesday, exactly 12 weeks after my surgery. I was only in for 3 days, as I had my monthly Sandostatin shot on Friday in Boston.  Work was not too busy as we are winding down now toward the end of the year.  My business gets very busy about 4-6 weeks after the end of each quarter.  I still found it exhausting because I have not been in a structured environment for so long.  Just taking mass transit to work during rush hour was tiring.  I’m glad I only started with a short week.  This coming week I am only working for 2 days and only 3 during New Year’s week.  Hopefully, I’ll be getting more stamina and used to the structure again during this quiet time.

While at work, I am not always in control of what and when I can eat.  I am and will be eating out more with less home prepared food.  I have been eating a wider variety of foods now without too much trouble.  I will still bring some food into the office so I can have some control.  I went to a client Board meeting on Thursday and they had a red velvet cake to welcome me back!  Not exactly the type of food I’ve been eating lately but I had a bit and it was a nice gesture! 

On another subject, I tried Digest Gold which is a digestive enzyme when I got my gas issues a few weeks ago.  I found that it helped a lot and I did not have to take it all month, just when I had the problem.  The nutritionist at Dana Farber suggested that I should also take it in advance of any meals when I am out with clients and not in full control of my diet. I’ll keep a few pills in my purse for that.  I’ll keep using the Digest Gold for a few months to confirm how well it works and to see what type of dosage I’ll need long term.  I’m quite pleased that it has worked for this problem when other remedies have not.

All in all, I’m doing quite well now, not fully back to normal but probably about 80% there.  I’m happy that things are going well and I wish everyone a Merry Christmas and happy and healthy 2014.

 

 

Sunday, December 1, 2013

Online Cancer Support

Over the course of the last 3+ years, I have “met” a lot of people that have neuroendocrine cancer through online carcinoid support groups such as ACOR and Facebook.  It’s hard to meet many carcinoid patients in person because this is such a rare cancer.  I’ve learned a lot by communicating online with other patients to talk about their experiences with doctors, treatments and other issues.  I’ve also become friendly with other patients who write carcinoid blogs.

Several months ago, I “met” Suzanne Murphy.  Suzanne had had a poorly administered Sandostatin shot and found my blog while she gathering information about this pricey drug.  We started communicating and I learned that she also wrote a blog about cancer (called Gulf Gulf’s blog).  Suzanne had both neuroendocrine and cervical cancer.  Her blog was well written, funny and heart-wrenching at the same time.  I put her blog on my mine and she did the same. If we had lived near each other, we would most likely have met and in person and become close.   Her last post was from the hospital about a month ago.  A few days ago, I was thinking about Suzanne and googled her name. What came up was her obituary. She died on Halloween. I feel so sad about her death. Suzanne was 39 when she died. She leaves behind a husband and three young sons. 

I’ve had other online carcinoid buddies who have died but somehow Suzanne’s death hit me harder.  I guess it was because she was so young and such a great blogger. 

Online cancer friends are great to have.  We share the same disease and understand each other’s issues and thoughts, sometimes better than those in our family or circle of friends.  Nonetheless, an online friend is not physically close. When the going gets rough, they may go offline and you may not know what happened to them.  Sometimes, people go offline and nothing has happened, they just needed a break.  Other times they die and you may not ever know it. 

 Rest in peace Suzanne. You will be missed.

Sunday, November 24, 2013

Eight Weeks Post-Op

I can’t believe it’s been 8+ weeks since my de-bulking surgery. I am recovering slowly but surely.  I have been pretty conservative and eating mostly a low fiber diet but I have been adding a lot of new foods and eating out more with no problems.  Last week was the first time I felt my stomach growling or had feelings of hunger.  I am still having an issue eating enough to maintain my weight. I am still losing a pound per week.  Overall, I’ve lost about 18 pounds since my pre-surgical appointment in early September.  My bowel movements have mostly stabilized to one a day – basically back to normal there.  I still have not had a salad or any raw vegetables.  I guess I will consider myself fully recovered when:

1.    I am not eating/drinking any protein powders or shakes to bulk up my diet

2.    My weight stabilizes

When I went for my Sandostatin shot on Friday, I asked the nurse practitioner when I might get my appetite back and stop losing weight.  She said it could take up to 6 months!  Holy cow, at this rate, I’ll be emaciated by then!  I’m sure that won’t happen as I am continuing to improve. Most of my clothes at least fit or are loose now and I’m fine with that. 

Over the past few weeks I have also been less tired and am sleeping normal hours. I was having gastrointestinal problems with eating and drinking at the same time right after surgery. Now, those problems are gone. I still don’t have my stamina back and am working on getting and keeping my energy up.

I will be returning to work on December 17th.  That is exactly 12 weeks after surgery.  I wanted to stay out through the holidays but Dr. Clancy’s office said that they could not allow me to be out any longer.  Going back in mid-December will give me a chance to take it slow for a month or so before the year-end busy time gets going.  I’ve really enjoyed my time home recovering and I don’t really want to go back to work.  Unfortunately, I’m a bit young to retire and probably not sick enough to go out on long-term disability.  The break has given me some time to think about what I might want to do when and if I do retire. I might be able to swing working part-time and have the best of both worlds. 

My 8 weeks off has been quite stress free and my diet has been very controlled in that I eat most meals at home. When we go out, we choose the restaurant carefully to be sure I will be able to find something that will agree with me.  Working will be much more stressful because of the hours, travel and lack of control of my eating situation.  I have another 3+ weeks to enjoy the time and recover and I’m going to savor every moment.

Have a great Thanksgiving!

Sunday, November 3, 2013

Nutrition Assistance After Surgery


Friday was my first appointment for my Sandostatin shot after my post-op visit last month.  It has been 5+ weeks post-surgery and I am still quite fatigued with not much of an appetite.  I don’t have much pain and have lost 15 pounds.  I’ve been pretty conservative with eating, sticking to a low fiber diet.  I’m not that hungry and not craving anything in particular so it has not been too hard to be on this boring diet.  I probably do not need to lose too much more weight but another 5 pounds would give me some good leeway when I do get my appetite back!  This is the first time I’ve been below the top of my body mass index (BMI) range for several years!  Dr. Chan suggested I meet with a nutritionist when I was in Boston for this appointment. I did and the session was very helpful. 
I don’t consider myself a nutritional expert at all. I don’t know all the technical terms or even the difference between vitamins and minerals.  I understand the food pyramid and used to eat a diet that I thought was pretty nutritious.
My basic issues from a nutritional standpoint are that I am losing weight at about a pound a week and have little appetite. I have had gas “issues” for about a week during the past month.  I had this gas problem prior to surgery, but it was minor, not occurring every month and only for about a day or two when it happened.  I think of this gas as “Sandostatin gas” because:

1)     I never had it prior to taking Sandostatin LAR

2)    It does not seem to have any relation to anything I’ve eaten and does not respond to over the counter medications like Gas-X

The Sandostatin gas seems worse since my surgery.  It’s only been 5 weeks and I’m hoping it gets better over time.
The nutritionist I met with was very nice and competent.  She gave me a list of foods that may cause gas that consisted of the following items:

·         Beverages:  beer, carbonated drinks, red wine

·         Dairy:  milk, cheese, cottage cheese, yogurt, ice cream

·         Dried legumes:  baked beans, beans like kidney, pinto, garbanzos, lima and navy, split peas, lentils and soybeans

·         Fruits:  apples (raw), prunes

·         Vegetables:  asparagus, broccoli, brussel sprouts, cabbage, cauliflower, corn, cucumber, kohrabi, leeks, onions, peppers, radishes, sauerkraut and turnips

·         High fat foods:  fried foods, fatty meats, gravies, cream sauces and pastries

·         Other:  garlic, chewing gum, artificial sweeteners such as mannitol, maltitol, sorbitol or any other sugar alcohol.

Her suggestions were to do the following 3 things, but only one at a time.  She wanted to make sure that if something works, we would know which approach helped. She said to try each suggestion for 5-7 days and see what happens.  The suggestions were:
1.    Reduce the gassy foods and lactose (dairy foods)
2.    Try a probiotic supplement
3.    Try a digestive enzyme
She said that a lot of carcinoid patients have gas issues but did not go so far as to say it was from the Sandostatin, although she did not rule it out.
I know next to nothing about probiotics or digestive enzymes so I asked for advice on choices.  She said to try a probiotic product called Ultimate Flora in a dose of 30 billion.  She said it was available at the Vitamin Shoppe.  Good thing I asked because when I went in to the Vitamin Shoppe, there was a whole wall of probiotics – I would never have known which one to select.  I figured I’d start with the probiotic pill and see what transpires.
The nutritionist did not give me a recommendation on a digestive enzyme but other carcinoid patients have suggested papaya extract or a product called Digest Gold.  The Vitamin Shoppe stocks these products as well.  
I think I’ll save the low lactose diet for my last option because I like my yogurt and dairy so this will be bit harder for me.  Hopefully either the probiotic or digestive enzyme will work.
In addition to the above suggestions, she said I could branch out from peeled apples and pears to not peeling them and adding grapes or strawberries.  I can even eat the whole baked potato including the skin!  I should switch from Orgain as my protein shake to a no lactose product like Ensure or Boost when I do the low lactose week.  The nutritionist also recommended that I take an extra forkful of food, even if I feel full because my stomach has most likely shrunk since I have not been eating that much.  She also said I could drink white wine!  I’ll drink to that once I feel a bit better!