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.

Back to work part time

On Friday, 2/6, I went in to work to get my laptop fixed and had intended on staying just long enough to get it taken care of and then I was going to be out of there.  When I got to work, my badge was disabled so it was back out to pass and ID to get that resolved and then through the portals at Schriever.  Of course, I got to the room I work at and, again, my badge didn't work so back up to the badge office to get my access restored and I was finally at my desk.

On the 45 minute drive in, I thought I would just go ahead and start back to work half time because I can sit at a desk and be productive at work as easily as I can sit on the couch and watch TV.  I got to my desk and was able to contribute immediately on several items and that solidified my decision.  I got my laptop working and finished out my first half day at work.

This week has gone well so far but it is really quite stunning to me to see how much a simple 4 hour day takes out of me.  I come home and take a 1-2hr nap when possible but have had appointments almost every day this week after work so that has bitten into my nap time.  I also have an Octroscan scheduled for next week but was giving a small amount of tasking I can do from home and will capitalize on that opportunity as well as use some holiday hours.

It is incredibly rewarding to be back at work.  I am good at what I do and it feels wonderful to be able to use my talents once again.  I know that every day is not going to be rewarding and many are going to be drudgery but the once or twice a day where I can really help others and advance our project are soothing to my soul.

I am still not eating well.  I get my 2300 calories per day from TPN and then try to supplement that with another 500+ calories of a full liquid diet.  This usually amounts to something like orange juice for breakfast, ensure and a soda for lunch, and tomato soup and sweet tea for dinner.  This menu gives me about 650+ calories or so which is a good additional boost.  I still crave real food and every once in a while splurge with solids but I pay a price for it with an obstruction generally following that meal.  It works its way through eventually but it just takes a while.  I do have to say the buffalo wings on Sunday were very good!

I start the extra Lanrenotide tomorrow but still don't have the Afinitor scheduled yet.  I don't know how long it will take for the insurance company to approve but hope it won't be too long.  My local oncologist is a bit more concerned about side affects than Dr. Boudreaux but my TPN includes weekly monitoring of my metabolic system so we can keep a good eye on my kidneys and other functions.

I know I will have to return to full time disability for periods in the future such as the procedures in NOLA and a hoped for laparotomy sometime this summer but this is good for now.  I will enjoy my time in the real world and look forward to the point at which I can return to work full time and, perhaps, actually get to ski next year or play hockey again.

Time for a plan stan

It has been forever since I have posted but things have been kinda bland for a while.  My digestive tract continues to be tentative with alternating weeks/days of obstruction and semi-normal behavior.  We have increased the calorie count on the TPN to just under 2300 calories per day and I am hoping that this is able to reverse some of my weight loss.

I currently am at about 144 pounds and have struggled with fluid retention.  The TPN is 1.5 liters of fluid per day and at times my fluids get a bit out of whack and it takes a couple of days/weeks of additional diuretics to bring it back in line.  As of the start of this week, I no longer have swollen ankles or feet so the 144 pounds seems to be a valid weight at this point.

Now, on to the plan.  We met with with Dr. Boudreaux in New Orleans this past Tuesday and when we had to remind him of our last surgical visit with him, thought this was going to be a wasted trip.  He then excused himself to talk to some other doctors and then came back with a big plan.  There are portions of the plan that are certain and some that are uncertain at this point so I will deal with them separately.

For certain, we will be doubling my injections of Lanrenotide.  This is the relatively painful shot I used to get every four weeks in the glutes and we will now be doing it every two weeks.  We will also be starting a new chemo drug called Afinitor.  A recent study showed that the use of Afinitor was able to give significant progression free response in mid gut carcinoids and we are hoping I am one of those to respond.  It also has the effect of softening scar tissue which is a large reason for the problems I have digesting food.

We will run these for 3 months and then re-evaluate tumor markers to see if we have reduced tumor burden and improved the overall situation.  This is the known portion of our new plan.

The unknown portion involves two separate procedures.  First, another doctor at the NOLA clinic believes he can place the nano-knife probes to get the tumors near the rectum.  He is more talented in this area than Dr. Boudreaux so it is something we will try.  We also may get it done up in Denver if Dr. Eric Liu (another carcinoid specialist) knows of a nano-knife expert that could reach the tumors.

The second portion is to directly address the tumors in the liver for the first time using Transcatheter Arterial Chemoemobolization (TACE).  This is a procedure where a catheter is fed through an artery in my thigh and up to the liver.  Chemo drugs are then directly introduced to the tumors with the hope of killing them.  The liver is fed by two different blood supplies, the hepatic artery and the hepatic portal vein.  The liver tends to get about 75% of its blood supply from the vein and the tumors almost always live on the oxygen rich artery output so targeting tumors and not liver is somewhat straightforward.

It does carry risk for other organs such as the kidney but they will try to protect them as much as possible with other medications.  They will also inject dye through the artery and follow it on x-ray to see where it goes.  They can then temporarily 'plug' some holes to try and reduce the collateral damage.

Reducing the amount of tumor in my liver is hoped to reduce the amount of carcinoid syndrome I experience and also reduce the likelihood of carcinoid crisis.  My understanding is that the hormones that the tumors give off are often filtered out by the liver but when the tumors in the liver get too large, there is no filter to prevent it from reaching the rest of the system which causes my crashes.

If the doctor in Denver can do the nanoknife, we will do that soonest.  If not, we will wait and do the tumors near the rectum along with the TACE at the same time in NOLA in about 3 months.  Once this is all done, we will hopefully then be in a position where I could tolerate a major surgery which could be done to address the tumors wrapped around the ureters and possibly free up my bowels a bit.

It is hopeful to have a plan.  It is good to know what we are going to be doing.  It is nice to know there is a hope to get me to the point where I can eat somewhat normally because I love food.  It is nice to have a goal that keeps me around for a while longer to enjoy my kids' college, calculus, and athletics.

Christmas joy from friends and coworkers

All afternoon and evening, Stephanie had been frantically working on cleaning the house like she was expecting guests.  I knew we were expecting her boss and his wife for dinner next Monday so this seemed a bit premature.  Fortunately, the kids were helpful in doing some of vacuuming and cleaning.  Stephanie also made cookies and I could not fathom why since her party for work was Wednesday and she is very big on fresh cookies.

The doorbell rang three times tonight.  The first time was a delivery from UPS.  The second time, Steph grumbled about the UPS guy missing a package.  The third time was just after Forrest went out to the mailbox to get today's mail and I assumed he somehow locked himself out.  I then heard caroling and thought that it was a nice throwback and enjoyed listening to the song from my couch.

I then heard them coming inside the house and thought that was very odd until they came into the room where I was sitting and I saw familiar faces of my coworkers and friends.  Needless to say, I was very stunned. More than a dozen people got together to come to my house, just to sing me some carols and let me know that, although I am not at work, I am not forgotten.

They brought joy to this night and tears to my eyes.  I know I am loved but to see this sort of action from coworkers and friends just shook me to my core.  They brought along a stack of Christmas cards, signed from many at work who were unable to come and also a gift of a heated blanket so that I don't have to crank the heat up and sweat out everyone else in the room.

How do you repay this sort of kindness?  How you do tell people that they have given your soul new life through their gift of time and song? My only possible payment is to make my way through my current struggle and pass on the same kindness to others.  I am humbled.  For those, reading my blog, who are Christian, this is exactly what Christ meant when he said "For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink; I was a stranger, and you invited Me in".

This Christmas, remember those who are sick.  Remember those who are hungry.  Remember those who have no place to live.  If you truly believe that there is a war on Christmas, the way to fight that war is not to complain about people saying 'Happy Holidays' but it is to remember and take care of those who are not as fortunate as you.

Back on TPN but I am eating some

On December 7th, I got started on TPN again.  This is my third time and I am getting to be an old hand at the routine.  I am being infused over a 12hr cycle so the TPN starts in the evening and then finishes just as I get up in the morning which is very nice.  It still interferes with sleeping somewhat but not having to carry the bag around all the time is very nice.

I started on 1000 calories per day which is a nice improvement over what I had been taking in.  After a couple of days, they then advanced me to 1500 calories/day and that is where I am at now.  With 1500 calories/day through TPN, I don't need to consume a huge amount of food to maintain or gain weight now.

As to eating, I am slowly feeling out my boundaries of what I can eat and what I cannot.  My near term goal is to do fluids for breakfast and lunch with semi normal food for dinner.  My first attempt at this was on Sunday, December 6th.

We had a belated birthday celebration for Stephanie and we got dinner from Five Guys.  A hamburger is out of the question for me but they do make a grilled cheese sandwich which should be relatively easy to digest.  I lucked out and they grilled my sandwich right where they had recently grilled some onions and that added a very nice hit of flavor to the sandwich.  I also got extra cheese which added even more calories and I had a very happy tummy.

Monday night brought more real food and I had Kraft Mac-n-Cheese in the blue box.  This meal also went very well and I continued to press forward.  Tuesday night brought taco-Tuesday from Del Taco and the three crunchy tacos and a churro was a step too far, causing me to not eat much of anything on Wednesday.

I have found a new taste for tomato soup and there are some very good options out there for me to eat.  I do sneak in a couple of club crackers with the soup but I am sure to chew them to a good mash before swallowing.  I have lost my taste for cream of mushroom or cream of chicken soup somewhat but it certainly is better than nothing and a few crackers help them out as well.

I have been just having a large glass of orange juice for breakfast, skipping the cream of wheat but may add that in as time goes on as well.  I often then supplement all of this with an ensure, jello, pudding, or some ice cream throughout the day.  On a good day, I easily exceed 1000 calories of food consumed but bad days are often only a few hundred.

The weight will come and the fatigue will start to go away.  Not immediately but I can be patient.  I am currently hovering in the upper 130s for weight.  According to BMI, I am severely underweight at this point (I would just barely be normal for someone 5' 9").  My current weight goal is to make it to 150 which puts me solidly into the normal weight category with a little bit of margin.

What is the long term plan?  I don't know.  I should be seeing my surgeon in early January and we can discuss some then.  I don't know if I am operable at this point or if surgery could even resolve it.  I do know that I need to be stronger before that could even happen either.  If I can get to where I am eating one real meal (even a limited meal) a day, that is something I think I could tolerate for quite a while.

Home but not out of the woods

I entered the hospital on Friday 11/27 and was on a clear liquid diet until Sunday evening, the 29th.  I then did a full liquid diet for three meals without any issues and transitioned to an unrestricted diet on Monday evening.  I continued the unrestricted diet through Tuesday without issues and was released Tuesday afternoon.

Unfortunately, things have not continued to be issue free.  Tuesday evening dinner made my stomach hurt some and made me concerned that things were not OK.  Wednesday lunch caused some very significant stomach cramps and the gurgling in my stomach returned that usually accompanies a bowel obstruction.

I am not out of the woods.  I have an appointment with my oncologist tomorrow and will be asking to get back on TPN so that I can get some consistent nutrition back into my body.  My body is weak and I can feel it hovering on the edge of a cliff.  I am almost always cold and walking up and down the stairs is something I have to really convince myself to do.  Once on TPN, I will be going back to a liquid diet with the occasional regular food as I tolerate it.  I don't know if this situation can be resolved with surgery or some other intervention but that is the plan for now.

I feel like I am finally hitting the endgame.  As most of you know, I have been at this for fourteen years but I have never had a year like this one.  I have not been 100% since February and have not even been 50% for much of that period.  I always feel exhausted and am always looking forward to the next time I can take a nap or go to sleep for the night.

I fear that I will not return to 100% at any point in the future and would be excited just to be at 50% at this point.  I have given up on playing hockey again and fear that skiing is not going to be an option as well.  Returning to work is yet another step that I don't know if or when it will occur.

Sorry to be such a downer here but I have always pledged to be honest with everyone as to where I am and how I feel.  I am down physically and emotionally but hope to make improvements beyond where I am currently.  I know I won't get back to 100% of where I was but hope to improve from where I am now.

Back in the hospital again

Three hospitalizations in a month sets quite the record for me.  Early the week of Thanksgiving week, I started having issues with what appeared to be an obstruction.  I then went without eating from Tuesday afternoon through Thursday morning in an attempt to relieve the obstruction.  I ate Thanksgiving dinner with the family and got to enjoy one of the best turkey's I have ever eaten (excellent job Steph!) but food did not stay down and the obstruction was a given.

On Friday, we finally decided to go to the hospital and had no idea of the shooting in town and got a bit caught up in the hospital insanity that resulted from that event.  We finally got through the ER with a CT scan that showed anasarca in my abdomen.  The doctor felt that this probably was causing problems with blood flow and digestion in the intestines and we got moved into a hospital room late Friday night.

Since then, I have been sitting in a hospital room here in Colorado Springs, 'enjoying' a clear liquid diet, dreaming of some of that thanksgiving dinner I did eat.  We don't know much about what the future holds at this point.  The hospital doctors are hesitant to suggest anything and my doctors have limited availability because of the holiday weekend.

Clear liquids have done well today (I did vomit yesterday) and the cramping seems to have passed completely.  Passages appear to be opening so I hope to progress my diet soon but don't know when that may or may not occur.  The lack of seeing doctors has been frustrating but I know doctors are people too and need to spend time with their families as well.

This means that a return to work is obviously delayed as does any other return to anything appearing to be normal.  Fortunately, I am in Colorado Springs, close to friends and family and can see all of them easily.  It also makes things much easier on Stephanie and the kids.

I will update as I get more information but, for now, the hospital is where I will remain for the near future.