And, here we go!

Surgery day is finally here.  At 6am central time on 5/30, we arrive at the hospital and, at 8am central, surgery is supposed to start.  Surgery will be long but I can't imagine it taking less than about 8 hours but could be as long as 15 hours.

We spent most of 5/29 at the hospital, talking to Dr. Boudreaux, meeting other staff including the anesthesiologist and getting labs drawn.  Dr. Boudreaux filled us in a bit more on what to expect as well as cautioned against what he doesn't know yet.

The number 1 goal of the surgery is to relieve the obstruction.  From the scans, it looks like this should be a doable procedure but you never really know until you get inside the body and start examining things directly.  The obstruction could be due to adhesions (scar tissue), tumor, reduced blood flow, or any combination of these.  Dr. Boudreaux believes it is the latter two and hopes that he will be able to rescue as much bowel as possible.  The one specter he raised was the possibility of having to take so much bowel that I am on TPN for life.  Hopefully it does not come to that but at least I would still be able to eat, just not receive any nutrition from the food I consume...

The number two goal is the removal of the tumor constricting the ureter of my right kidney.  He will have stents inserted into both ureters so that he can service both ureters if necessary but the scans seem to imply only the one has a problem.  The stents are also lit!  This means that he will be able to actually see the stent and know exactly where the ureter lies rather than just going by feel.  Kinda cool!

The third goal is then to address tumors in the liver if he has time.  It is likely he will try to cut out the biggest tumors where he sees them and this should reduce the amount of carcinoid syndrome that I experience.  At the same time, he will be taking my gall bladder which often gets plugged with sludge from the Sandostatin I am given on a regular basis.

Thoughts, prayers, and emails are appreciated but, throughout and after surgery, I am not the one most in need of the support at this time.

The person now in need of most support is my wife Stephanie.  She has a caring bridge site where she will be updating what is going on with the surgery and my recovery but is also where you can leave her some encouraging words.  You can also reach Stephanie on facebook or through email (steph at vaniwaarden dot org).

Recovery for me is just a matter of laying in bed, dealing with the pain and waiting for my bowels to wake up.  I will be in the ICU for the first two days or so and we don't know if Stephanie will be able to spend the night there or not. Whether she sleeps in the ICU or at the hope lodge, sleep will not come easy for her.  We have a large support group of friends but none of them will be in New Orleans so things are going to be tough for Stephanie.

Thanks for all the good wishes that have been sent our way over the last two months of this ordeal but please give Stephanie as much love and support as you can over these next two weeks!

One week till we fly out!

Time is moving quickly now and it a significant relief to me as well as to my family and friends!  Last Thursday was my birthday and was my first birthday where I felt older than my age.  My bowels started obstructing again on Wednesday morning and I was starting to have some severe cramps as well as a low grade fever which was really wearing on me.  I did get some wonderful presents from my family and friends as well as many well wishes from others.

On Friday, my exceptional wife hosted a get together in my honor at Southside Johnie's and I was amazed at the number of people that came out.  I always get encouraging words from different people at different times but seeing a collection of them, all in one place, made my week.  I do want to thank everyone who did come out as well as those who expressed their regrets.  I also apologize for only staying for about 1.5hrs but that is about 30 minutes longer than Stephanie thought I would be able to handle because of my bowels.

The last two months have been completely controlled by my bowels.  For the last three weeks, I have been on a clear liquid diet and, in spite of that, I still get obstructed and it really is very impressive how great the pain can be.  Fortunately, the most recent bout with obstruction has finally released today and I am really looking forward to getting a full night of unmedicated sleep!

The party at Southside Johnie's was wonderful and did indeed make my week but, on the same day, I got the news that the nano-knife will be available for my surgery!!!  This means that we all set to go.  We fly out of Denver on May 28th, have doctor's appointments all day on the 29th and I hope to be in the operating room at 8am on the 30th.

I will then spend the next two days in the ICU for my initial recovery.  I understand that I will likely have a number of drains to help my body discharge the fluids from all of the cutting that was done.  I also expect that I will be short some number of feet of small intestine (6-8 feet is not unexpected) but hopefully they will leave my illeocecal valve, they will salvage the ureter on my right kidney, and I won't have a colostomy.  I know that is a lot to desire but that would be the best possible result.

After the ICU, I will move to the fifth floor, hopefully without any drains, to finish my hospital recovery.  We will be waiting for my bowels to wake up which usually starts on the end of day 4 or the start of day 5 if history holds true.  As soon as I am able to take solid food, I will probably be discharged from the hospital and will then move to the Hope Lodge to complete my New Orleans recovery.

We plan on returning home on June 13th and we then complete my recovery at home.  The nurses say to plan on 12 weeks to recover but I hope to be playing hockey much sooner than 12 weeks.  I have had a laparotomy three times before and have always been playing hockey the first opportunity after the 6 week mark (5 weeks and 6 days on the last surgery).  That said, I am weaker going into this surgery than I was on the previous surgeries (still down about 20 pounds) and this surgery is going to be much longer and more extensive.

I am still looking forward to food.  My mouth still waters at the smell of anything savory and I can assure you that you don't lose your appetite after almost two months on TPN.  I can also tell you that not an hour goes by without me thinking of popcorn, chips, crackers, cheese, tacos, french fries, ...  As many have suggested after my last blog post, I am going to start being (more?) rude and ordering first from now on!

My life on TPN

Well, I don't have any update about my surgery at this time so I thought I would post a bit about how I get my nutrition.  Right now, I have a partial bowel obstruction which prevents me from taking in a large amount of food/drink orally which means I need to find another way to get calories, vitamins, and other nutrition.  The solution for me is called Total Paranetral Nutrition (TPN).

We start with an approximately 2.4 liter bag of TPN that contains glucose, lipids, and minerals.  We mix two vials of additional vitamins and then put in a few milliliters of vitamin C.

We connect this to a small portable IV pump.  This pump runs on two C batteries which we swap out once a day when they have expended about 75% of their power.  The pump is pre-programmed with the rate for my nutrition and empties about 95% of the bag (they put in a small amount of reserve).

Every night, we swap the old bag for a new one and Stephanie has gotten quite good at it.  My Peripherally Inserted Central Catheter (PICC) line has two separate connections so that I can receive multiple things at once.  I only use the one connection and, every night, Stephanie flushes one of the ports with 10ml of saline and 5ml of a heparin flush (reduces clotting).   The PICC line goes up a vein on my arm and finishes in the middle of my chest, right at the superior Vena Cava, just a few inches from my heart.

The second line is where I get the TPN.  Stephanie flushes this as well with 10ml of saline every night and then hooks up the TPN line.  Once we are all done, we put the bag and pump in a slightly modified camelbak lobo and I get to wear this 24/7.  The TPN line is about 4.5 feet so I usually can lay it next to me when I am sitting or, especially, when I sleep at night.  It certainly has reduced the amount of tossing and turning I do when I sleep.

I always change my shirt when I get my TPN swapped out and I take a shower as well.  They don't want you to ever turn off the TPN but, while I am getting swapped, 10 minutes for a shower and cleaning up can't hurt.   I do have to wrap the PICC line in a plastic bag to keep it dry because we need to be exceptionally cautious about getting an infection in the line.  Since I start the TPN in the evening, the bag is quite a bit more empty (and considerably lighter) by the time I get up in the morning and need to lug it around.

TPN gives me about 2400 calories per day which is just enough for a 6'3" adult male weighing 200lbs to maintain his weight.  I usually supplement this with Gatorade and various nutritional supplements throughout the day.  I have been sticking with only clear liquids since my obstruction seems to be getting a bit worse, seeming to back up more easily, even when I do non clear liquids like Ensure.  With the supplemental nutrition I am usually able to add another 400 calories per day and this seems to have reversed my weight loss.

Last full meal?  That was April 1, 2012.  We went to Red Robin with my niece and her boyfriend after a soccer game up in Denver.  I wanted to order the Bleu Ribbon Burger but someone else ordered it before me (I have an aversion to ordering the same thing someone else ordered.  Yes, I know that is weird) so I ordered the Prime Chophouse burger.  I remember eating all of it and some of the fries but that was the last full meal that I have eaten.  Had I known, I would have dealt with my problem and ordered the Bleu Ribbon burger...

The doctors have some calls in to find out if my surgery date is still on but I don't know when they will get back to me.  They do their long surgeries on Wednesday and Thursday so I don't expect an answer until Friday.  I do have my octreoscan scheduled for next Wednesday in preparation for the neoprobe guided surgery the on the 30th.  We just need the go ahead.

Time to put some meat on those bones

Food is my big issue right now.  I need calories and I need lots of them.  My TPN provides about 1500 calories on T-T-S-S and about 1900 calories on MWF.  This averages out to just under 1700 calories which a bit lacking for someone 6'3" and who used to be 200 pounds (currently about 175).

As some of you know, I tried some solid food about 1.5 weeks ago.  I had some Popeye's Mashed potatoes and Gravy on a Friday night and then some cream of chicken and rice soup on Sunday night.  Starting Monday, my bowels were backed up again and they just finally started moving a week after the soup.  This means I have had almost 1.5 weeks without supplementing my TPN and it shows.

Based on my prior weight, I should be getting about 2250 calories a day just to maintain that weight.  Being about 500 calories shy of that mark means that I will continue to lose weight at a rate of about a pound a week which is exactly what we don't want to have happen.

So, we are returning to a liquid based diet and I have spoken to the nutritionist at the Dr's office about what my options are at this point.  There are a number of things I can try (some by the makers of Boost or Ensure) and I will begin giving those a run around the block in my attempt to put on the weight.  I would love to be over 180 pounds by the time of surgery but that is a lot to accomplish in the four short weeks I have left.

I had hoped to return to work last Friday but the fatigue that set in with my lack of eating has set those plans back as well.  I am torn right now.  I feel like a complete slug for my lack of doing anything useful here on the couch but I know I need to be conserving energy and building up my body.  Just like anyone else out there, I have a need to be needed and to be useful.

So, will I go back to part time work before my surgery?  I don't know.  I have to find a way to accomplish both the desire to build up some more body mass as well as the desire to be useful.  I thought I was on the path to that 2 weeks ago but the roadblock I have run into has made me question the direction I was heading.

So, for the next couple of days.  The focus will be on calories and processing what I am able to consume and we will re-evaluate after that.

Finally have a surgery date!

5/30.  Wednesday.  Pre-op on Tuesday.  Fly out on Monday.  Man.  Of course, all of this is dependent upon the nano-knife being available and we will be touching base during the week of the 14th to make sure that we can move forward.

Surgery scares me this time.  I have had three other laparotomies and understand the basic concept and the recovery but this one makes me more uncomfortable.  My first surgery was 2hrs, the second was 3, the third was about 5 and this next one will probably be as long as all of those put together and then some.

The doctors put their patients in the ICU for the first two days after surgery, probably because they want to have additional monitoring.  After that, I move to the more pleasant rooms at the hospital but probably with one or more drains to handle the results of the surgery.  The surgeons use internal sutures that will dissolve and then use glue to connect the external tissue which is nice because they won't need to take out staples.

I stress over the idea of getting a colostomy.  I know that many people are able to continue relatively active lives with a a colostomy and there a number of options such as a colostomy with irrigation which may make general life a bit nicer in some respects but...  Ugh.

The rest of recovery should be mostly normal.  I will spend another 5 days or so in the hospital after I leave the ICU, waiting for my bowels to wake up.  I will spend a couple of days walking the halls with a number of tubes attached and I hope that I will be able to get rid of the TPN bag soon after I move out of the ICU!

Then I will get to come home.  The nurses suggest another 12 weeks for recovery at home.  That is longer than I have ever spent for recovery but they suggest planning for 12 and being excited when it is less.

Of course, I need this.  Surgery is unquestioned now and we don't have a real choice.  Sometimes I just wish I had good choices.  Sorry for the downer.

First week at home

Well, we have been home for a week now and things are starting to return to a minor sense of normal.  I am still quite weak with a short 3/4 mile walk making me tired but I am starting to add some food by mouth!  I am getting more used to having an IV connected to me continually for the TPN but it still feels quite odd much of the time.  Stephanie was able to find a Camelbak pack to carry my TPN around and it is much more convenient than the bag that was provided for free.

I am adding Juven for my 'breakfast' to help give my bowel something to do.  I then mix up 32oz of Gatorade that I have for lunch and dinner.  This gives me about 2000 calories per day right now which is getting closer to the target of 2400 calories.  I have added a bottle of Ensure for 'lunch' and it appears to be processing through my system.  Adding the Ensure puts me at about 2250 calories (2350 for the Plus version) which, given my relatively sedentary state, should result in some weight gain.

The worst thing right now is dealing with the continual thoughts of food.  I have cravings for a bit of everything but mostly salty foods right now.  Things I think of:

• Popeye's fried chicken with spicy mashed potatoes and gravy
• McDonald's french fries
• A medium rare grilled ribeye steak with twice baked potatoes
• Chili's chips and salsa (their chips are some of the lightest and crispiest I have found)
• Tacos with my wife's taco meat seasoning
• Chipotle chicken fajita burrito or crispy chicken tacos
• Nachos supreme (no beans of course)
• Popcorn
• Smartfood
• Five Guy's cheeseburger with grilled onions
• Grilled Pork New Orleans (wife's cooking again)
• BeauJo's mountain pies 
• My wife's biscuits

Now, given that my body continues to process the Ensure, I may have some minor options for some of the food I have been craving.  I only have a partial obstruction which does allow some food to pass but just not a large amount.  This means that I may be able to substitute in some of the options above.  Things I need to avoid are foods that take a long time to digest such as raw vegetables (no problem there), seeds,  or fatty foods (many conflicts there) but at least the mashed potatoes and gravy meet the criteria!

Friday night was the great experiment.  I skipped the Ensure for lunch and had some Popey's spicy mashed potatoes and gravy and am waiting to see if it stays down.  We also toasted marshmallows on the DeLine's new fire pit and I ate a couple of those as well.  So far (Saturday morning now), no cramping but I am still a bit uneasy about my digestive tract.  It's going to be a long wait for the surgery but I am certain I am going to eat well afterwards!

Speaking of surgery, I spoke with the nurses at the Neuro Endocrine clinic in New Orleans to get a status on the Nano knife.  Surgery is dependent on getting access to the Nanoknife and the company representatives say that the FDA approval may not be until the middle or end of May now.

Certainly surgery could be performed without the Nanoknife.  This has been done for years but it has the increased likelihood of complications and these are some areas where we really want to avoid complications.  There is no problem with obtaining the use of the neoprobe for guiding the surgeon's scalpel, we just need to wait on the Nanoknife.

So, given that surgery is now further off than originally expected, we will have to choose a day for surgery and then hope that the technology is available at that time, postponing surgery if it is not available.  I am also exploring the possibility of returning to work part time while we wait for my surgery, maintaining my short term disability status.  This will help me feel a bit more part of the world for a while as well as exercise my mind a bit more.

On a positive note, having a computer orders of magnitude faster with almost 1000 times more memory, I was able to disprove something I postulated 18 years ago during my doctoral work!

Back home again!

Well, we did not want to jinx it by letting people know what our plans are so very few people knew that we got to check out of the hospital on 4/13 and we returned home this morning!!!  It was wonderful seeing the mountains again as our plane flew into Colorado Springs but it is startling how brown things are here after the intense green of New Orleans.

So, here are the details.  I did not get the GJ tube installed and have come home on just the TPN for now.  We are letting the obstruction release a bit right now with nothing by mouth until Monday morning.  At that point, I will begin supplementing the TPN with gatorade or other sports drinks to get more water along with significant additional calories.

Speaking of calories, I have some serious bulking up to do.  I have always been relatively thin and, one year ago, I weighed in at about 205.  When I started cycling seriously again last summer, that quickly dropped to about 195 and I have stayed there until early February.  Well, I just stepped on the scale and I am down to 175.  Obviously, if I were trying to diet, I would be ecstatic but losing 10% of your body weight unintentionally is not something that you want to do too often.

My surgery is still not scheduled but it is somewhat understandable.  Stephanie went to the Dr's main office on Friday to fill out as much paperwork as possible and they showed her my chart.  It currently consists of one folder with my name handwritten on it and one sheet of paper.  All the material that they need is currently at the hospital and I anticipate that it should be transferred early next week.  As part of my discharge paperwork, I was instructed to contact the office to schedule a surgery in the middle of May.

Speaking of surgery, I have one job over the next few weeks and that is to regain some strength.  I was quite shocked this morning when we were walking through the New Orleans airport at how quickly I became tired and how exhausting short walks were.  In order to speed my recovery after the surgery, I need to be as strong and healthy as possible when I roll into that operating room.

So, next week, we start with clear liquids for the first couple of days to see if I can tolerate that.  If so, then I will step it up and start adding in some simple full liquids like Ensure.  The TPN only gives me about 1700 calories (also, amino acids for protein, vitamins, and electrolites) and we would ideally like to consume in excess of 2400 calories per day.

If nothing else, just being home and out of a hospital is wonderful.  I loved riding in a car, breathing outdoor air and sleeping in a non hospital bed.  Here's to a couple of good weeks of weight gain!