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. 

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:

http://www.nytimes.com/interactive/2014/01/05/sunday-review/declining-lethality.html?_r=0

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:

http://www.nytimes.com/2014/01/05/sunday-review/why-everyone-seems-to-have-cancer.html?ref=opinion

This is a realistic article that does not give false hope about an imminent cure for cancer.  Interesting reading.

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.

 

 

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.

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 17^th.  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!

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!

 

Why We Make Bad Decisions

There is an interesting op-ed in today’s New York Times with this title.  It mostly concerns medical issues. The highlights are as follows:

1.    People are hesitant to challenge experts. They “simply cede their power to decide to the expert”.

2.      “Anxiety, stress and fear can distort our choices.  Stress makes us less likely to take in the information we need.  Anxiety makes us more risk-averse than we would regularly be and more deferential as well"

 

 

3.  “All of us show bias when it comes to what information we take in.  We typically focus on anything that agrees with the outcome we want”. 

 

4.  “We need to be aware of our natural born optimism, for that harms good decision-making too”. There is an interesting example of how people respond to probabilities that are higher or lower than their expectations in the article.

5.    “We need to acknowledge our tendency to incorrectly process challenging news and actively push ourselves to hear the bad as well as the good”.

I liked the graphic that accompanied the article – shown below:

 

The full article is in the link below.

http://www.nytimes.com/2013/10/20/opinion/sunday/why-we-make-bad-decisions.html?pagewanted=2&%2359&ref=opinion&%2359;_r=0

Over the past 3 years as I’ve done many consultations with doctors, I’ve seen examples of these decision-making traits in myself.  It was interesting to read a synopsis of these behaviors.