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.

Surgery is Over

The surgery seems to have gone well.  Instead of a hemicolectomy, they left my colon alone but removed two large tumors plus about 100 cm of my small intestine.  The doctor did not remove my gallbladder which is ok with me because I'm not having any trouble with it. Dr. Clancy said that he got 90% of the tumors out which is excellent.

The recovery could take time.  I still have a NG tube and about 4 IV's with different medications in them.  I still have a catheter as well.  They are also giving me  heparin to avoid blood clots and I still have an epidural for pain management.

I've been up and walking around and out of bed in a chair for the better part of the day.  I am quite fatigued though.  I will follow up when there is something new to report and I am feeling a bit better.

Anxiety

My surgery is now less than a week away. Next Tuesday morning, I am scheduled for an exploratory gastrointestinal operation. I will find out the exact time next Monday.  I understand that the surgeons will be potentially performing a right hemicolectomy, removing my gallbladder, several large tumors, affected lymph nodes, and part of my small intestine.  I’m not used to having medical procedures where I do not know exactly what is going to happen, so this is causing me quite a lot of anxiety.  I’m concerned about long-term side effects of such a large surgery.  Nonetheless, I have been putting it off for quite a while now, and I am ready to do it, even though I am quite scared. 

I had my pre-op appointment last Friday and came out with a clean bill of health – all systems are go.

I’ve been listening to the mind-body relaxation techniques from the Peggy Huddleston book and CD’s.  They help me relax and refocus my state of mind more positively.  They also put me to sleep sometimes – I guess that’s a good thing because I need to keep myself healthy.

I’m also trying to stay away from too many people so I don’t catch anything before next week. 

Dr. Chan’s office gave me a prescription for Ativan. I have been having trouble sleeping with my anxiety about the surgery.  I have not taken it since we were in Boston last week.  I think just being in Boston reinforces my nervousness.  When I am home in New York, I’m usually pretty busy so I haven’t focused as much on next week. 

I have been speaking with a nurse from Aetna. This is a free service offered by my health care provider.  I’m not sure if it has been that helpful.  Yesterday, she told me that the doctor yet to submit my “case” to Aetna yet.  I didn’t understand exactly what that meant.  Aetna is a PPO, not an HMO, so I was not sure what needed to be done before the surgery.  I tried to get her to tell me how doctors typically submit a “case” but she did not know. The nurse stated that sometimes submissions come after the surgery.  This was all very confusing. I really don't know what, if anything, I should be doing with this information (or lack of it!) so I am not doing anything. 

I also emailed my disability case manager at my company to see if they received my FMLA form from Dr. Clancy’s office but she did not get back to me. What a surprise…hopefully, all is ok or perhaps someone would have told me there is a problem.

In spite of this bureaucratic complexity with the insurance companies, I am doing relatively well. I really can’t wait until this is over with.  I will try to have a family member post how I am doing after surgery and will follow up when I am well enough to type and think again.

Please think of me and send healing thoughts my way next Tuesday!