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.

Post-Op Appointment and Pathology

It is now 3+ weeks post-surgery.  I am getting better slowly. I have to remember that this is a marathon, not a sprint.  I am eating a low fiber diet, though not consuming as much as I should be to maintain my weight.  When I went for my post-op appointment on Friday, I had lost 12 pounds.  As someone who is always watching her weight, I was wondering how much weight was tumors and small intestine that had been surgically removed and how much was fat, muscle and water that represented real weight loss.  The largest tumor, called a liver lesion, was hanging from my liver, not on or in it.  It measured 11.5 x 11.5 x 6.7 cm and weighed 485.9 grams or 1.1 pounds (as per the pathology report)!  I’m not sure what the rest of the removed items (see below) weighed.  Pre-surgery, I was about 10-15 pounds overweight so this weight loss is welcome.  I have an appetite but it is not as strong as pre-surgery.  I am not having any cravings for anything!   As someone who spent a lot of time thinking about food, this is quite unusual for me and will take some getting used to.

In addition to the large liver lesion above, there were 2 segments of small bowel, one that was 71 cm in length and when opened, showed multiple (over 20) nodules ranging from 0.2 cm to 2.1 cm.  The second segment of small bowel was 13.4 cm in length and when opened revealed approximately 5 nodules ranging in size from 0.3 cm to 0.6 cm.  Within the mesentery, there were 7 nodules ranging from 0.8 cm to 6.6 cm in size.  Finally, the right ovary and fallopian tube were removed and a 1.0 cm tumor was found on the ovary. 

In one of my prior posts, I said that around 100 cm of small bowel was removed.  The pathology report showed 84.4 cm as shown above.  Dr. Clancy said that the small bowel shrinks when removed so that is why the pathology report shows < 100 cm.  He did say that 90% - 95% of my tumors are out now.  I asked about bowel obstructions due to adhesions/scar tissue and he said that happens in about 5% of cases.  Should that occur, it would not necessarily require corrective surgery.  I also inquired about hernias. Doctor Clancy said they sometimes happen and not to lift anything heavy for 3 months. 

My labs showed elevated ALT (SGPT) and AST (SGOT).  Dr. Clancy was not surprised by that.  I hope they get lower as I recover.

My chromogranin A (CgA), however, was much lower.  Pre-surgery, the CgA was 236 (reference range <93).  Post-surgery, the value is now 43.  That’s good news!

Meanwhile, I’m still very fatigued and my bowel movements are random but mostly under control.  I haven't ventured too far from a bathroom yet. I’m getting bored with the low fiber diet but need to continue at least for a while until my recovery progresses.  All in all, the surgery was less painful than I expected but I’m not sure about the longer term damage to my quality of life.  It’s too early to tell.

One Week Post-Op - Thoughts and Experiences

Now that I am out of the hospital and recuperating, I’d like to summarize the experience and perhaps give tips to others who might be facing the same surgery.

Hospital Stay
I have never had such an extensive surgery before. I had a pain epidural in my back, a nasogastric (NG) tube in my nose, an IV in my arm and a catheter in my bladder – basically tubes in every direction. I had heard horror stories about the NG tube from other patients so I knew that would not be pleasant. I was lucky enough to have it inserted while I was under anesthesia so I avoided that pain. The tube itself was not painful, just very annoying as it stuck out of my nose and it was difficult to move my head. It caused a lot of mucus to accumulate in my throat and chest and every time the nurse flushed it, I felt the water in the back of my throat. I was thrilled when they removed it on day 3. The catheter was not terribly painful, it was just awkward if I wanted to get up and walk because I had to hang the bag on the IV pole before I would walk anywhere. That was removed on day 4. I was a bit afraid of the epidural because I didn’t really know what to expect but that turned out to be the best thing I had for pain control. It worked perfectly to numb any pain so that I didn’t feel anything in my gut area. I didn’t need any additional pain medication since it was working so well. I didn’t want them to take it out but on day 5 they did because I could not go home with an epidural.

After the surgery, my potassium level was low so they were giving it to me via IV to elevate it. This was the most painful part of my stay in the hospital. Potassium, when given intravenously, can cause large amounts of stinging. I found it unbearably painful, more so than the big abdominal surgery. The nurses had various levels of experience with trying to mitigate this pain – some would dilute it with saline and increase the time that it would drip into me, others really didn’t know what to do about the pain. I was thrilled when I finally passed gas on day 4 so I could take the potassium by pill instead of IV.

My pain levels were never very high, even after the epidural was removed. I’m not sure if I have a high pain tolerance level or if Dr. Clancy did a very good job of avoiding a painful outcome – probably a combination of both. I don’t have a good tolerance for most narcotic painkillers so they sent me home with a prescription for tramadol, which is one of the less potent pain drugs. I have not really had any pain so I am taking only Tylenol at this point.

Post-Surgery Diet Issues
I had spent some time with a nutritionist at Dana Farber before the surgery and she gave me all kinds of information on low fiber diets and sample mini-meals. I started with some small items of solid food on day 5 and was having diarrhea within 10 minutes after eating it. This went on for two days and Dr. Clancy was concerned about releasing me when I was having such a high volume of diarrhea. Meanwhile, I was going crazy walking the halls all day and was ready to get out of the hospital! I was complaining about this on one of the carcinoid message boards and got the best advice ever from a patient in Georgia.  I had not heard this from any doctor or any nutritionist or any patient until Monday as I was lamenting the possibility of another day in the hospital.

So, here is what to do to avoid diarrhea immediately after eating: Do not drink for 15 minutes before you eat and for 30-45 minutes afterward.  I immediately started doing this and my breakfast stayed down for 2+ hours before I had diarrhea again! I’ve been doing this since Monday and have not had much of the dumping, except when I tried half a banana. I’ll just put that down on my “foods that don’t work” list.

So, 8 days out from surgery, I’m doing pretty well with little pain, a low fiber diet, still having diarrhea but mostly under control. I’m hoping it gets a little better each day.