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!