Two days down, five to go

We slowly advance time here in NOLA and it never seems to advance fast enough.  We got moved across the building to one of the new larger rooms which is wonderful.  The other rooms were renovated but there was no room for Stephanie to be with me, especially when she stays the night.  We think we are actually in the very same room that we occupied when we came to NOLA for the first time ever back in April of 2012.

I still don't have an NG tube and, as long as I don't throw up, Dr. Boudreaux is going to delay giving me one.  My bowels are continuing to decompress from the bottom as more and more diarrhea is expelled and I don't add anything other than gastric juices to the top end.  Hopefully I will be able to delay the NG tube until the day of surgery and not have to get one inserted while conscious nor have more time with it in me than necessary.

On the negative side, he is concerned about the fluid on my lungs and wants me to be as strong as possible.  So, we drained fluid on Thursday and added a chest tube to continue draining the lung.  The draining was done under a vacuum and caused my shoulder to tense up worse than I can remember.  The pain scale that they ask you to use is 0 (no pain) to 10 (worst pain you can imagine) and this easily hit a 9 for a period of time before backing off to a 7.  They then gave me some toradol which brought it down to a 5.

Of course, then night came and I needed to figure out how to sleep with this thing in my back.  Sleeping on my left side causes my shoulder to hurt, sleeping on my back causes the tube to be uncomfortable and continue to hurt.  My right side is difficult and requires careful positioning to avoid laying on hard plastic valves.

Sleep would not come, even with my 10:30 toradol shot.  Finally, at 2am, I asked for something stronger and they paged the doctor.  He gave me a 10/325 percocet which is what I take at home and I was able to get some sleep with that in my system.  Percocet works but it is a narcotic and the big downside to narcotics for me is that it slows the digestive tract and that is one of the last things we want at this point.  We want my gut to be as active as possible so that it drains and empties, decompressing before surgery.

I am getting TPN again at about 2200 calories/day and they are giving me daily growth hormone.  Dr. Boudreaux will also be gave me some additional IV iron to help the EPO increase my hemoglobin production, again making me stronger for the surgery.  Last I heard, my hemoglobin was in the area of 10+ when it is desired to be much higher.  Hopefully the iron ignites with the EPO and gets my bone marrow hopping.

Just a couple more days is what I keep saying.  It is getting closer and I will get the surgery.  I know the days after the surgery will be even more difficult but the end will be in sight.  I have already spoken with Steph about what I want to do WRT food after surgery.  I want my traditional Popeye's mashed potatoes and gravy as soon as I can start taking solids along with one or two pieces of crispy dark meat chicken.  I also would like a Pizza Hut personal Pan Pizza Supreme if she can find one because they are just the right size for my appetite and would taste delicious.

In 2012, I did not plan where to eat when I got out because I did not really know the area nor did I know what my appetite would be.  I know now that my appetite will be limited so I can't eat too much but I want something that I have been craving for a while.  It will sound disgusting to many but I want some McDonalds french fries.  You know the ones, just out of the hot oil, crispy, golden brown with a good dusting of salt.  I may want a bit more so I may just get a cheese burger.  I would like a Big Mac but my appetite will not be equal to the task.

On a very positive note, Forrest graduated 8th grade yesterday and we got to watch it through the wonders of Skype.  At times I feel like that scene from the Incredibles (see this scene at about 50 seconds on) where Bob is complaining about celebrating mediocrity but I am glad to see my son move on from middle school to high school.  River (my daughter), took a wonderful picture of Forrest with his big brother.  Both will be freshmen next year, Riley at CSU and Forrest at Discovery Canyon.  I am very proud of both of them.

Surgery tomorrow? Not quite...

It has been a rough two weeks since my last post simply because I am getting worn down from the hits.  I have not been eating anything other than small sips of water in addition to the 2liters of TPN.  My last 'food' was probably the Strawberry Jello snack I had on my birthday, May 17th.  I tried eating one more time after that but my digestive tract had other ideas and the food came back up.

The blockage is certainly becoming more severe.  I have had some stool movement (VERY watery with suspended material) so part of the intestine has been starting to decompress.  Unfortunately, I am not in a position for surgery quite yet.

Dr. Boudreaux felt my abdomen and said it felt very blocked and scarred.  Laying flat is difficult from the tightness and there are places where it is quite painful when he presses.  Definitely obstructed and definitely in need of surgery but he needs me to improve in two ways.

First, he wants to insert an NG tube (I had one of these back in April of 2012 and they are damned uncomfortable to receive when conscious) to try and relieve some of the pressure on the bowel from the top side.  This will make it easier to manipulate and safer for me and the surgery.  Second, he wants to continue the TPN as well as start some additional shots to try end encourage protein usage.

The long and short of this is no surgery tomorrow.  I had been counting on this for weeks now and keeping it in my sights as a day of relief but we are putting it off another week.  I will be hitting the ER tomorrow and then transferred to a room for a week of in patient NG tube and TPN until surgery the follow Wednesday, June 2nd.

There is a funny symmetry to 2012 in that in 2012

• we came down on Memorial day (check)
• had clinic on the day after memorial day (check), 
• surgery on 5/31, 6/1, and 6/2.

I guess it only made sense to delay surgery to 6/2 to maintain the symmetry to 2012...

I am losing it.  I am at my limit and beyond with this last sequence.  Have you noticed how many commercials are about food?  Have you realized how much of social life revolves around food?  I feel somewhat like an outcast with my inability to eat and my hunger cannot be satiated.  I feel run down and tired and am having a hard time just going day to day right now.

At least the NG tube will stop the vomiting.  At least the surgery is coming (although I said that before).  At least I have my beautiful wife at my side.  At least I have made it long enough to see my first born graduate high school.  I just need to get past this mountain I have in front of me.

Surgery is planned!

I said this back in May of 2012 and November of 2012 and we are back here again.  Surgery is a GO!  I have been sitting on pins an needles since yesterday morning, both dreading and excited for a call from New Orleans.  Finally, at about 3:00, I got the call and they believe surgery is reasonable to get me eating again.  Interestingly, in May of 2012, we went to clinic the day after Memorial day just like we are doing again here is May of 2015.

We will be going to clinic on 5/26 at noon and will be admitted to the hospital after my appointment, preparing for surgery on the 27th.  As with prior surgeries, this caries a significant risk of carcinoid crisis but there are few better equipped to handle this reaction that Dr. Boudreaux.  I am sure there is a significant chance of losing some bowel because it is so scarred but, when all is said and done, I should be able to eat.

Starting to eat will come slowly because my intestines will not be used to large volumes of food and my stomach most certainly has shrunk some but I will eat normally again!  My food dreams will be addressed and I will be able to participate in so many social settings that revolve around food.  Right now, I would even look forward to some of the bone-in charcoal ribs that Rob DeLine made for a get together at his house years ago!

Long term plans?  Surgery on the 27th means that the first of August is 9 weeks off.  That will be my target for returning to normal life (hockey, work, and normal play).  Ski season is obviously in no danger and I am looking forward to making up for the season truncation I experienced this year.

Metron graced me with an Amazon gift card and I have over a dozen books to read which will fill up my time.  I appreciate all the book recommendations from everyone and certainly have a variety of new reading to do.  One (H is for Hawk) was just finished and is a book that I would not have picked up without a recommendation and was a good read.

Food dreams

I had forgotten what it was like back in 2012 when I was on TPN before.  I don't recall desiring food so much and it is really wearing on me this year.  I can do full liquids fairly well but only in small quantities (1-2 ensure's per day, some jello, pudding, or a shake).  I find my stomach filling up with bile many times because the backed up intestinal track just doesn't let anything pass and I don't have a gall bladder to 'dole out' the bile when necessary.  This often forces me to vomit several hundred milliliters of the foul liquid, sometimes several times a day and does not lead to a happy Ron.

I think of salty, crunchy food often.  Crispy tacos, popcorn, nachos, and chips and salsa.  I think about the crunch of the skin of deeply fried chicken like that from Popeye's or KFC.  Regular potato chips and french onion dip sounds wonderful and my mouth waters at the thought of the salt from the chips as it merges with the flavors of the dip with that wonderful crunching sound.

Steak.  Delicious, grilled, thick pieces of steak.  A deeply marbled piece of ribeye, medium rare that melts in your mouth, barely requiring you to chew but the act of chewing is completely rewarding as well.  I think of the baked potato beside it, overflowing with butter, sour cream, bacon, chives, and shredded cheddar cheese.  Again, salt with a number of mingled, complimentary flavors.

I normally wouldn't put a salad in here but, again, the crunch of the lettuce along with a wonderful bleu cheese, ranch, or basalmic vinegrette.  No salad is complete without crunchy, fresh croutons and some shredded cheese.  I remember a bleu cheese wedge I had at the Red Fish grill in NOLA about 10 years ago that was absolute stunning and I dream of having that salad again.

French fries.  Particularly McDonald's french fries.  There is something about the way they taste and crunch in your mouth when they are fresh and hot out of the frier with their light coating of salt.  Other food at McDonald's, I can take or leave but their fries are wonderful.

Crab with lots of clarified butter.  Cracking open the claws with the large chunks of meat inside and then dipping them in the butter for a little taste of heaven.  We don't get it often and it is never fresh here in the middle of the country but it is luscious all the same.

Chipotle.  There are two different things I order at Chipotle:  A chicken fajita burrito with mild and chili-corn salsa, white rice, cheese, and sour cream.  This is perfect when I can't eat it right away and the melding of the flavors is awesome.  The sweetness of the corn, mixing with the heat of the chilis along with the slight char on the steak is heavenly.  When I eat at Chipotle, I generally get the crispy chicken tacos, again with mild and chili-corn salsa, cheese and lettuce and the crispiness of the shells is always remarkable and the rest of the flavors put me in a bit of a happiness coma.

A ground beef chimichanga, fried with a crispy shell, smothered in green chili, lettuce, and sour cream is another thing I am looking forward to.  The heat of the chili is tempered by the coolness of the lettuce and the tang of the sour cream.  The meat filling, along with more cheese, grilled onions adds another dimension of flavor that I miss terribly.

So many other foods.  Chicken Parmesan, sesame chicken, Stephanie's delicious sweet and sour chicken, Five guys hamburgers, Jack Daniel's fried shrimp at TGI Fridays, Hot wings.  The list goes on and on.

I love donuts but they are not high on my list right now.  Savory is most of what I crave.  I grow tired of the sweet chocolaty flavor of ensure and the sweet sameness of Jello (Jello brand is better than Jolly Rancher brand).  I occasionally get some cream of chicken/mushroom soup but, again, the sameness is overwhelming.

Hopefully soon.  I hope to find out tomorrow if Dr. Boudreaux believes he can help and we can then plan for the surgery.  Soon after that, I will get food.  I will get my savory.  I will have my flavors.  I know it is going to be slow going at the start but I know I will be able to eat and not worry that it is coming back up an hour later.  Soon. That is what I keep telling myself.