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.

Back home again and I am not fine.

Home from New Orleans and I am not doing so well.  I weigh in at about 190 pounds right now and that is about 45 pounds of fluid buildup from all the IVs that were running in me last week.  The procedures were supposed to be easy with my returning to work right after return but the days in the ICU have made that impossible.

I feel as if I am right back where I was in June after that marathon surgery.  My legs are incredibly weak, my body is swollen, and I am fatigued beyond understanding.  I am not fine and I feel like the mountains just keep growing in front of me.  Stephanie saw someone else's blog post and it fits the way I feel right now.

I have trouble telling people how I really feel.  People ask me in the hallway at work how I am doing and it is difficult to know how much to reveal.  I do let some people know but it is hard not to say 'fine' when I am asked.  Do they really want to hear the real answers?  Do they really want to plumb the depth of things that I am dealing with?  I know people care but it is hard to get away from 'fine'.

I have the new perc tube with the associated drainage bag.  I need to log the output of the tube so that the doctors can evaluate the improvement (or lack thereof) of my right kidney.  I can't wear shoes due to the swelling of my feet and I can't wear regular pants because of the swelling in my abdomen and legs.

Recovery is not what it used to be for me.  I was fortunate in previous surgeries with the ability to bounce back and recover quickly and fully.  These last few incidents have been far from bouncing back.  These recoveries are crawling back and giving thanks for every inch that I regain of the miles that I have lost.

I have given up on playing hockey for the foreseeable future.  My duties as goalie have been taken over by another goalie because I simply am not physically able and don't see that changing.  I almost cannot get to my feet from a kneeling position in normal clothing, let alone the 40 pounds of goalie gear that I would wear.

I haven't given up on skiing yet.  I think a 6 run day now would be right at the limit of my capabilities.  I don't know how much skiing we will get to do this year but blue groomers are going to be my run of choice for the near future.

So, I am not fine but I am trying to get there.  If you ask me how I am doing, I may say fine but understand that there is a huge range of territory covered by 'fine'.

One more procedure and then home (I hope)

The procedures we were planning on doing last Wednesday had a bit of a hiccup.  The urologist was able to insert the left stent with no problem but the right stent would not go.  Finally, they called in an interventional radiologist and put a percutaneous nephrostomy tube in the right kidney.

Perc tubes are something I have been fighting for a couple of years but it finally had to happen this time.  The hope is that, during tomorrows procedure, they will get the right stent in and the perc tube can be removed once scar tissue has formed to seal the bond (about 6 weeks).

Of course, the second part of the procedure was set to go but, as they transferred me to the other OR, I went into a mini carcinoid crisis.  Blood pressure dropped and this is bad for the kidneys so we are hoping that they rebound over the next week.  They did end up doing the scoping through the rectum of the tumors and it was determined that they are too far away to be treated with nanoknife.

So, tomorrow morning, at 7am, we try to get the right ureteral stent installed from either above or below.  Hopefully this is a non eventful procedure as I have started on the sandostatin tonight and should have saturated all of the tumors.  If the stent goes in, they will inject some tracer through the perc tube and determine if the perc tube can be capped off at this point or it needs to remain open to drain the kidney.

Looking to the future, Dr. Boudreaux is also proposing addressing the tumor mass by injecting them with alcohol.  This is a technique used to ablate liver tumors and has the possibility of shrinking this tumor mass.  Otherwise, the only way to deal with it is a lengthy open surgery to get down to those tumors.  The nano knife that was planned cannot be done because the tumors are too far away to reach with the needles.

So, we sit and wait today for the procedure tomorrow.  My limbs are swollen from additional fluid and we will start some diuretics today to try and reign in that swelling.  Hopefully back in the Springs by Wednesday!