Hunger and Fatigue, my new constant companions

I have been home from the hospital for a week now and am starting to get the hang of this new PEG tube.  I am finally figuring out how to drain my stomach contents easily and am able to avoid vomiting most of the time.

I believe I am now fully obstructed.  I occasionally have a small amount of juice, soda, or other drink (think 4oz or less) and that small amount of drink has been making a return trip back out the PEG tube rather than trying to process through my digestive tract.  I am able to consume small ice chips throughout the day so this occupies my mouth and stomach to a limited extent.

I don't know exactly how many calories I am getting in TPN right now (will check next time I speak with the nutritionist) but think it is somewhere in the area of 2000 calories.  I then get an additional one liter of saline fluid infused to prevent the dehydration that sent me to the hospital before.  I am retaining fluid now so we may need to adjust the amount of additional saline that I get but at least I am not getting dehydrated.

Dr. Boudreaux wants to see my numbers improve and they are indeed.  I have looked at all the liver numbers and they are on a very constant track back to 'normal' for me.  My kidney numbers have also returned to my baseline values.  This is good news because there always was the worry that a significant amount of real damage had occurred a couple of weeks ago but that seems to be in the past now.

The other thing Dr. Boudreaux wants before surgery is "He needs to be able to walk around, up the whole day."  I can certainly walk around, not far and not a lot but I can walk around.  As to up all day, I normally take a nap every day and I don't know if this will be a strike against me or not.

Food smells so good.  I am almost to the point where I dread mealtime because I know that my nose is going to be picking up all these wonderful scents and will have no chance to satisfy them.  I know that eating anything now will not happen until I have surgery unless I am willing to just vomit up the food I eat later and that is not fun.

It isn't limited to food that smells good either.  I have been craving clementines and the burst of juice when you bite into a wedge of fruit.  The usual other suspects are there as well.  I have been thinking of tacos and chips with salsa.  I have been craving that feeling of refreshment when you drink half a can of soda or other liquid after working hard in the heat and how it just pulses through your body.

I want sausage and bacon with either french toast or pancakes (blueberry?) along with lots of butter and real maple syrup.  Spaghetti and lasagna (the good stuff my wife makes) along with garlic bread with real butter sounds fantastic.  I want a Chipotle fajita burrito with chicken, chili-corn salsa, pico de gallo and sour cream with a large root beer to drink.

There are some sweets as well.  Creme brulee always tastes so good and Stephanie and I would occasionally stop by the Bone Fish Grill just to have one for desert with some fresh berries on top.  Speaking of fresh berries, just picked strawberries, bursting with flavor, chopped over some ice cream or just on their own.  Summer grapes and watermelon sound wonderful and I am looking forward to fruit salads with lots of fresh fruits.  Of course, donuts are on the list with a French Crueler or a Boston Cream from Duncan Donuts making the list.

When do I get to eat again?  I don't know.  We are supposed to touch base with Dr. Boudreaux around April 1st and update him on status so maybe we will get some plans at that point.  I just fear this getting pushed off further and further, having to live like this longer and longer.  My daughter, River, graduates this year and I fear missing her graduation in mid May along with her and my youngest son's birthdays in mid April.  I want the surgery but I don't want to miss out and, obviously, I don't want to die either.

Look ma! New tubes!

I haven't written since before I entered the hospital and that is because I have been fairly down physically and emotionally.  Upon entering the hospital last Tuesday the 8th, a number of things have happened and I think Stephanie has kept most of you up to date but here is my take on the last 10 days.

On Tuesday the 8th, we eventually got through the ER and ended up admitted as we expected.  They started me on IV fluids and that helped my overall situation considerably.  Then, we me Dr. Doom.  AKA Dr. Murphy, the on-call oncologist.  He came in and gave one of the most dire evaluations I have ever gotten.  He even went as far as to say that I have had a good run of 15 years with this disease and it was time to just let it go.  He said I was in multiple organ failure and there was little hope of any recovery, particularly for my liver.

Well, Surprise!  Not dead yet.  This did put Stephanie and I through the emotional wringer and we really did start having the talk of 'what if this is it?' amongst other conversations.  We continued our time in the hospital, getting fluids and slowly worked back up to 'normal' almost dead (not even mostly dead, just almost dead).

Stephanie got ahold of Dr. Boudreaux in NOLA and his big concern was the liver and was cautiously optimistic that I could pull out of it but feels that I have just one big surgery left in me.  We briefly discussed a multi-viceral transplant but, again, it was determined that I am not a candidate for that procedure.

With the NG tube inserted on Tuesday, we had begun to decompress my bowels and over the next couple of days, several liters of fluid was pulled from my digestive tract but no progress was made on passing stool.  Finally, on Monday, we decided to have a shot at putting in a PEG-tube to my stomach so that we can use it to decompress the bowel rather than with the NG tube.  Well, the GI doc said he could not get it but thought that an interventional radiologist might be able to.

The IR doc looked at some scans and said that he saw a 1cm hole where there was a possibility of putting in a PEG tube and we then transferred to Penrose hospital where they have an IR room with a CT that they can use during the procedure.  After a two hour procedure on Thursday, I now had a tube in my abdomen that can drain the stomach.  It has continued to drain fluid and has probably done over a liter so far but much of that is 'fresh' gastric juices.

What we have done is now buy some time.  I expect to be released on the 19th where we will go home and attempt to finish getting my liver healthy.  Once it is healthy, surgery should commence soon and I will have my last attempt at extending my life with this disease.

What will this next surgery buy me?  I am hoping for a few years.  If it is successful, it will just be another matter of waiting for the next bowel obstruction and then we will be in the end game.  I don't hope for 20 years or even for 10.  Another three or four would be awesome and I will treasure every moment.

I will treasure watching my kids grow and mature and seeing them move from one phase of their lives to the next.  I will treasure every bite of food and every drink I take.  I will enjoy the tickling that carbonated drinks give the back of your throat.  I will enjoy any chance I get to take the dog for a walk or go for a hike with my wife.

Of course, this assumes that we make it through the next few weeks and the surgery that follows.  It is not going to be easy nor is it going to involve easy choices but I need to live.  I want to live.  I want to see and do all that I can with the time I have remaining.  Please keep my family in your thoughts over the next period of time and I will try post more frequently.

Back to the Hospital

My bowel obstruction just won't release and I am quickly going downhill.  The Afinitor is driving my kidneys into failure so I have stopped taking it.  The TPN was driving my liver into failure so we had to remove lipids from the TPN, greatly reducing the caloric content.  Furthermore, I am unable to keep anything down other than sips of water and ice chips.

My weight has plummeted.  This morning, the scale gave me the scary number of 133.2 pounds which is my absolute lowest ever by far.  Some of that is probably dehydration but there is some truth to that number and that is incredibly scary.  I am 6' 3" tall and 133 pounds is the kind of weight you would expect from an unhealthy runway model or a victim of anorexia/bulimia.

So, we have three different critical issues right now and enough is enough.  I am trying to wrap up things around the house today and will be going to the hospital tomorrow to see if I can get stabilized in some fashion.  At the same time, I have a message into my doctors in NOLA to see if they have suggestions as well because it is becoming urgent.

We were hoping to get my strength back over the next few months prior to having a major abdominal surgery but I don't think we will get that chance.  I think we need a surgery fairly soon and my being weak is going to be just another risk factor that we will need to consider.  Right now, I don't see any way to get more calories.

TPN can't go too high with just dextrose and amino acids as that will cause problems with the pancreas and type 2 diabetes.  I can't swallow anything so there is no way to get calories orally.  I am starting to experience some pretty severe abdominal cramps from the obstruction and then I also had the joy of fecal vomiting last night (experienced once before in a previous bowel obstruction).

I am quite miserable right now and we need to find a way out of this.  I dread surgery and the recovery that is likely to be long and difficult.  I fear getting stuck in New Orleans for several weeks before and after surgery.  I worry about my wife and her new job, needing to take time off to take care of me while I am in and post surgery in NOLA.

On top of all of that, we have my daughter graduating from high school and I would love to be back home and at least partially recovered by her graduation in mid May.  We have club soccer starting up for Forrest and are down a driver with Riley in College.  We look at the enormity of everything coming up and it is scary.

Many people have offered help and we may need to rely on them heavily over the next period of time. One other thing (and this is Really a whine), we had a ski-in ski-out condo at Crested Butte and I saw it as my once chance to go skiing, even just a few easy green runs, this season.  Obviously, that is out now too.

Bit of a downer and rambling post here and I apologize for that but that is a reflection of the situation that Stephanie, my family, and I are in at this point in time.