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.

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! 

The Big Wedding!

Saturday was my niece’s wedding!  It was a big fancy affair in Boston.  The weather was perfect and the bride and groom were very happy.  My brother (father of the bride) spent the whole last year trying to convince Erin to go to Las Vegas and elope and came up with a cheaper alternative to all of her wedding ideas. That was all to no avail as the wedding was in a beautiful location right on the Boston Harbor with all the accoutrements. 
 
Everything was excellent – the company, food and entertainment.  A good time was had by all.

When I started going to Dana Farber for my cancer care in January, I said to myself that if they said I needed surgery, I would have it because the people I have spoken with who are carcinoid patients from Dana Farber are not always recommended for surgery, as they are at some other places.  When they did recommend me for surgery last April, I said that I would like to hold off on that until after my niece’s wedding in August.  Both Drs. Chan and Clancy thought that I should do it sooner.   I needed to get myself comfortable with the concept of surgery and I wanted to be in good condition for Erin’s wedding so that I did not take any undue attention away from the bride by being sick Aunt Beth.  I also did not want to have surgery in the summer when a lot of medical personnel are new in their roles and/or on vacation.  Since I am asymptomatic, I figured it would be ok.  So far so good.  Today I came back to work and one of my coworkers asked me what I will be doing now that the wedding is over and I said focusing on my upcoming surgery – not quite as fun!

At the wedding, several people came up to me and started asking questions about my cancer.  These were people I did not know or knew only as acquaintances.  I was not really in the mood to talk about my cancer at the wedding.  I deferred the cancer talk and changed the subject.  Since I have a small family, they must have figured that I was the Aunt with cancer.   Ugh…

So, while Erin and John are honeymooning in Europe, I will start thinking about listening to those calming meditations about reframing my thoughts to a more positive place and positioning myself for surgical success.  My pre-op appointment is on September 6^th so that’s my next engagement before the surgery.  Here’s to keeping myself calm and serene in the upcoming weeks.

 

 

Three Year Cancerversary!

This month is my 3 year anniversary of being diagnosed with carcinoid cancer.  Since then, my tumors have not progressed at all.  I am still asymptomatic.  I believe my case is somewhat unusual because my primary tumor has not been found and I have one very large tumor that is hanging from my liver and in front of my right kidney.  This tumor measures 8x10x12 cm and is pressing on my small intestine, causing an indentation that can be clearly seen on a CT scan.  It is this tumor that could cause a bowel obstruction. I also have other tumors scattered around my abdomen and pelvis.

This large tumor gets the biggest reaction from doctors.  It is quite mobile and sometimes doctors can feel it and other times they can’t.  That’s kind of weird!  The general reaction is that they have not seen such a large tumor in that location before.  These tumors have been with me quite a while and I have no idea when they started or continued to grow.  I’m just happy that there has been no progression since my diagnosis. 

I re-read my post from last August writing about my second anniversary. I am amazed at how far I’ve come in the past year in terms of improving upon my medical care and getting clear and articulate answers to questions concerning my treatment.

Last August I was questioning everything about my treatment including why I was taking Sandostatin and the justification for a large surgery when I had no symptoms.  Now I have a whole new team working with me and it has been much better in terms of information flow.  I feel a lot less stressed about my care, even though I’m about to have a big surgery.

This week has been a busy one in my cancer life.  On Friday I had a CT scan, an appointment with Dr. Chan, a meeting with a nutritionist and then my Sandostatin shot.  Dr. Chan said my CT looks stable with no changes. 

I also met another carcinoid patient from the Carcinoid Café on Facebook.  We had been messaging each other for the past two weeks. She had an emergency appointment Friday at Dana Farber so we met in the radiology waiting area.  It was nice to meet in person.  Both her CT and mine came back stable with no growth in tumors.  Good for us!  On to year 4 for me.

Paying Until it Hurts and Medical Fantasies

The cost of medical care in the US is repeat theme in this blog, primarily because I find it outrageous.  I keep bringing it up because the New York Times is running a series on the cost of common procedures in the US. The most recent article is in the paper today and it caught my attention yet again.

The first article was on colonoscopies, the second on childbirth and today's on hip replacements.  The links to the articles are below:

http://www.nytimes.com/2013/06/02/health/colonoscopies-explain-why-us-leads-the-world-in-health-expenditures.html?pagewanted=all

http://www.nytimes.com/2013/07/01/health/american-way-of-birth-costliest-in-the-world.html?pagewanted=all

 

http://www.nytimes.com/2013/08/04/health/for-medical-tourists-simple-math.html?pagewanted=all

The headline from today’s article concerns a Michael Shopenn who was turned down by his insurance company for a hip replacement due to a pre-existing condition. Mr. Shopenn started looking outside the United States for treatment. He found a hospital outside Brussels that charged only $13,660.  The cost in Belgium was about 6x less than in the US, where the typical charge is $78,000.

 

This got me thinking - this is purely my imagination running wild about how I might structure my cancer care if I had the ability and the means to do it.  My medical costs, outrage, business background and love of travel is fueling this fantasy.

My insurance covers between $2,500 and $8,500 for my monthly Sandostatin shots.  Let’s just say for example, that I could get a Sandostatin shot anywhere outside of the US for between $417 and $1,417 (the insurance coverage prices above divided by 6).    If I could get my insurance to pay half of what they are paying for the drug in the US ($1,250 - $4,250), I could find places to do my shots and  then pay for my airfare and hotel with the leftover funds.  I could also include my spouse in the cost but to be fair, we would pay for his travel expenses out of our own pockets. 

We could have great travels with trips all over the world while handling my cancer care.  Since I know that my shots are going to be every 28 days, I could book these trips well in advance to take advantage of early booking discounts.  It would be a win-win for both me and my company’s cost of insurance.  I probably don’t have enough vacation to do this for all 12 months but even if I did it for 6 months, the cost savings to my company would be substantial. 

Some places where I could surely get cheaper Sandostatin shots would be Switzerland, UK, France, Thailand, Belgium, Canada, India, Argentina and Australia, among others. I’m sure I could find some great things to see and do before or after my doctor appointments.

I’m guessing that most doctors in the US would not approve of a patient getting only half or none of the shots at their location.  They would not want to be responsible for anything that could happen when I got the shot elsewhere.  My company and their insurance carrier would never agree to this either.  Oh well, it was fun to think about.  Back to reality!

 

 

Disability Leave - Moving Toward September

I spoke with a person from our leave management department last week. I told her I am having surgery on September 16th.  She sent me a bunch of forms and a checklist of things to do prior to, during and after short-term disability leave.  She also explained that our company’s disability leave policy covers the following:

• Paid 100% of salary for the first 13 weeks on disability

• Paid 80% of salary for weeks 14 – 26 out on disability

• If I still need to be out after 26 weeks, my case will be reviewed by the insurance company that handles my company’s disability claims. If I were to go out on long term disability, my income would be 40% of salary.

The short-term disability leave is covered under the Family and Medical Leave Act (FMLA) that allows for 12 weeks of unpaid leave during any 12 month period.  Because disability leave is covered under FMLA, I will keep my health insurance while out on leave.  The FMLA leave runs concurrently with my company’s short-term disability policy. The short-term disability requirements are in addition to, and not instead of those for FMLA.  Because my leave will be taken continuously, not intermittently, I do not have to use up my vacation and sick days before I get paid by the company’s short-term disability policy. 

The completed forms that are required are:

• Request for Short-Term Disability Review.  I fill this out.

• Certification of Health Care Provider for Employee’s Serious Health Condition (FMLA).  My doctor completes this form.
• Return to Work Certification Form (not until I go back). My doctor also fills out this form.

I completed the first one and sent the second over to Dr. Clancy’s office. My company outsources its disability program to an insurance company. The letter I received from the leave management person stated that if my claim is approved by the insurance company, I will receive a telephone notification and an approval letter via mail.  This letter will outline the process and my responsibilities if my health care provider recommends an extension of my disability leave beyond the initial approval period.  I’m not sure what happens if my claim is not approved by the insurance company – the leave management person said that should not happen.

Wow! This seems highly paperwork-intensive!  The checklist they gave me seems quite thorough and now that I have an assigned medical leave person, I can always call with questions.  At least my company is making a complex process a bit easier by spelling everything out to me.  So far so good!

Meanwhile, we leased an apartment in Boston for part of September/October.  I have a place to recuperate. One more item off my to-do list.

Interesting Article on Clinical Trials

There is a thought-provoking article in the Sunday Review section of today’s New York Times titled “Do Clinical Trials Work?” The Sunday Review section is where the opinion and editorials are, not the news.  In addition, the author of the op-ed is Clifton Leaf, who just happens to have a book on this subject being released next week.  Even if you ignore the point of view in this article, the information on how clinical trials are designed and how phases 1, 2 and 3 are different is informative. It also defines placebo and double blind trials.  I thought it was interesting reading.  The link is below:

http://www.nytimes.com/2013/07/14/opinion/sunday/do-clinical-trials-work.html?ref=opinion



Disclosure

Today I told my boss that I would be having a gastrointestinal surgery in September and would be out for around 6 weeks. I informed him that the surgery is scheduled for September 16^th and we should talk about who will be filling in on my accounts while I’m out.  He did not ask any questions and deferred any questions concerning backup. I did not bring up cancer and he did not seem to care about the purpose of the surgery. That was fine with me.   I asked him about the probability that I could get terminated while out on disability due to a reduction in force (RIF – see my last post).  He said that he would not do that because it would be “dickish” and he’s not like that.  Nonetheless, I told him that I was concerned about my long term viability at the company. I did not want to come back from surgery only to be RIF’d a few months later.  He said that if he thought that would happen, he would likely tell me to go ahead and stay out for long-term disability.   I asked who I could talk to about insurance/medical issues should I have to go out on long-term disability and he gave me the name of a contact in Human Resources. That person referred me to our employee service center.  I called the service center for “leave management” and got a recording stating that no one was there and to leave my information.  ‘Someone” would call back!  So much for customer service – they did not even allow me to stay on hold for 30 minutes!  No one has called me back yet – maybe tomorrow….

Overall, this meeting went better than expected – not sure what I was so nervous about.

 

Surgery Scheduled for September

I am scheduled for surgery on September 16^th at Brigham & Women’s Hospital in Boston.  Many people, including my doctors, have asked why I postponed the surgery until September.  My primary reason is fear about this procedure in general, especially when I am asymptomatic.  I understand that there is a possibility of a bowel obstruction but I need to prepare myself emotionally and psychologically for the operation.  I also have a family wedding in August and want to be healthy for that event.   I am lucky to be able to think about and plan the surgery without an immediate major medical problem like a bowel issue.  

I wanted to have the operation in September because the summer will be over and everyone will have returned from vacation and gotten back to work.  I also wanted to do it after the Jewish holidays because many of the healthcare staff may be out for those days.  Dr. Clancy, my surgeon, operates on Mondays so that is how I arrived at September 16^th.

Brigham & Women’s Hospital's admitting office has already sent me some material about the hospital, policies and procedures.  A book they suggested is Prepare for Surgery, Heal Faster by Peggy Huddleston. It is about mind-body techniques to reduce anxiety, use less pain medication and heal faster.  There is also a set of 2 healing CD’s that one can buy with the book.  I bought both items in the hospital gift shop last week when I was in Boston. I have not read the book or listened to the CD’s yet but it is definitely on my “to do” list.  Two of the other things I need to sort out are:

1)     Finding ourselves a temporary apartment in Boston.  We will be required to stay in the area for post surgical appointments and in case of complications.

2)     Determining disability/healthcare coverage situation at work - more complicated.

I’ve looked into temporary apartments in Boston but it is still early for a September rental.  I think I’ll need to wait until mid-July to August to get one pinned down.  I have spoken to a few realtors, checked out the neighborhoods and made some progress.

The work situation is very complex. I work for a company that has good benefits. It’s also a very competitive work environment and the company almost always does a reduction in force (RIF) of 5% - 10% of its staff every year, usually just before Thanksgiving.  I’m not sure whether to tell my boss that I have cancer or just that I am having a major gastrointestinal surgery and could be out for 6 or more weeks.  I’ve asked several people about what to do when speaking with my boss. The answers have been emphatic but very mixed – no decisive opinion either way.  My boss knows I have been out for medical tests and procedures and has asked about it but in response I have been vague but not misleading.   Moreover, I’m not having a very good year for bringing in new clients.  I’m wondering if I could be included in our annual RIF later this year. 

If the surgery does not go as well as expected and I have longer term problems, I would have to go out on long term disability.  My company has a long term disability income policy that pays 40% of my base salary.  I don’t understand a lot about how it works and coordinates with Social Security disability income.  Once I talk to my boss, I will try to discuss this with a good benefits person.

In addition, if I go out on long-term disability, I’m not sure how my medical insurance coordinates with Medicare.  I understand that there is a 2 year wait for Medicare after applying for disability. I’m wondering if I will be on my company health insurance or COBRA until Medicare takes effect.   COBRA lasts for 18 months and then I’m not sure exactly what happens for the other 6 or more months.  I’ve heard of COBRA continuation coverage and HIPAA plans.  I’m not sure how these interact with my company health plan if I end up on long term disability or if I am RIF’ed - this term is used as a verb in my company!

If I get RIF’ed, I might not be able to get long term disability. I’m not sure if they would RIF me if I were out on short term or long term disability.  I'm sure my global benefits department already knows I have cancer from looking at my medical expenses. My situation would be no surprise to them, just to my boss and department.  I'm hoping for a speedy recovery and back to work with no layoff but I need to understand the issues if that does not happen.

All of this gives me a big headache!  If I lived in another developed country, the employment and healthcare issues would not even intersect as they have single payer programs not affiliated with work.  Stay tuned. Once I figure this all out, I’ll try to explain it to the best of my ability.

Meanwhile, I'm going to enjoy the summer and prepare for September.

More Provocative Articles on the Health Care System

This week was a good one for health care articles.  There were 3 in particular that caught my attention and resonated with me.
 

1.      “The $2.7 Trillion Medical Bill” in today's The New York Times :

http://www.nytimes.com/2013/06/02/health/colonoscopies-explain-why-us-leads-the-world-in-health-expenditures.html?ref=health

2.     "Finding the Right Hospital" in The Atlantic on May 28^th:

http://www.theatlantic.com/health/archive/2013/05/finding-the-right-hospital/276304/

3.      "A Lone Voice Raises Alarms on Lucrative Diabetes Drugs" in The New York Times on Friday May 31st:

http://www.nytimes.com/2013/05/31/business/a-doctor-raises-questions-about-a-diabetes-drug.html?ref=health&_r=0

 “The $2.7 Trillion Medical Bill” reminded me of the Time magazine article by Steven Brill a few months ago on the same subject.  The main points were about the variability in costs across different locations for the same procedure. Most patients don’t know how much a procedure costs until after it is done and the insurance company has processed or denied their claim. Both articles compare prices of medicines and procedures across the world, showing that the US has the highest costs.

Just this past week, I reveived my reimbursement information from Aetna, my health insurer.  My Sandostatin shot for April was billed to Aetna at $13,343 and reimbursed at $8,757.  My March Sandostatin shot at the same dose was billed at $5,000 and reimbursed at $2,722.  I recently changed doctors but I can’t imagine why two centers can charge such widely different amounts for the same shot!  I called Aetna to find out what was going on and the person I spoke with said that different centers have their own reimbursement rates for procedures and that the Sandostatin shot may be more expensive but other procedures may be cheaper.  I also believe the price of Sandostatin may have gone up because I’ve seen a few postings about that on the ACOR online message board.  I guess as long as my insurance company is covering it, I shouldn’t worry but it does make me a bit crazy!

I think it would be helpful if there were more standardization of prices and if it were possible to know up front what everything would cost.  It would make it much easier to decide which procedures to have, to shop around for better prices and to make sure that medical costs would not cause financial hardship. 

The second article covers patient satisfaction ratings and how, if at all, that may influence where one should go for treatment.  It was very interesting because patients may not be the best people to evaluate their medical care. The article cites some examples where the ratings are high but the outcomes are worse.  One commenter on the article stated “The closest analogy to hospital care is auto body repair. Both are insurance-paid and cost insensitive. And in each case the customer generally presents in distress, either by ambulance or tow truck, and in no position to choose. While both may advertise quality of service the customer is unable to judge that quality unless things go drastically wrong.”

As more hospitals publish patient satisfaction scores and more healthcare professionals are being compensated based on these factors, it is becoming a controversial issue.  One of the blogs I read, “Skeptical Scalpel”, shown on my blog list, frequently deals with the issues involved in hospital/doctor ratings.

The third article deals with a Dr. Peter C. Butler who found that a class of diabetes drugs may cause pancreatic cancer. It states in part: “Public Citizen and the Institute for Safe Medication Practices, two watchdog groups, have both arrived at the same finding….Dr. Butler faces powerful opponents in the makers of the drugs and many diabetes specialists, who say his studies are contradicted by other evidence….More information could come out in June when the National Institutes of Health will hold a two-day meeting on possible links between diabetes, diabetes drugs and pancreatic cancer. Dr. Butler will be one of the speakers.”

This article is less relevant than my usual rants but it just reinforces my concerns about the influence that big pharma has on the type of information that is released to the public and regulatory agencies. Both the effectiveness and potential hazards of drugs may escape public scrutiny until the class action lawsuits begin.

 

These articles continue to highlight the major problems and potential solutions within the US healthcare system. I’m not sure how things will ever change from the convoluted mess that we have now.