We are a go for Surgery on 6/23

For about 7 months now, I have known that this day was coming and it looks like it is finally here.  We met with Dr. Boudreaux today and it is obvious that he doesn't want to do this surgery because of the risk of post surgical problems and my physical weakness going into it and I agree with his assessment.  Of course, we are getting our hand forced because my body just isn't doing well on TPN.

Dr Boudreaux's first goal is to get me to eat.  His second goal is to get me to eat and his third goal is to get me to eat.  I have three other areas of concern:

1. Tumors wrapped around the ureters.  These will be addressed at the end if everything else has been handled and he has good access
2. Tumor near the rectum.  Currently low priority because it is hard to get to and the full solution is not tolerated well when you have a significantly malnourished patient
3. Tumors in Liver.  These may get addressed as the MRI seems to imply a few large masses that are easy to get to and could be removed without much risk.

This plan works for me.  Getting me to eat gets me on the path back to where I am strong enough to potentially tolerate some of these other procedures.  Whether or not we do these other procedures is another question but all of that requires a higher level of nutritional sufficiency and to get there, I need to eat.

This is not to say that there have not been curveballs on this trip.  We flew out of Colorado Springs, connecting through Dallas/Fort Worth to Baton Rouge.  As we were pulling up to the terminal in Colorado Springs, I got a phone call that the flight to DFW was being delayed by 2 hours which ate up most of our three hour layover.  By the time we got to the gate, the delay was 2.5 hours and then became a 3 hour delay when they gave up on the plane and got another one along with a new crew since they timed out as well.

Of course, our connection was now blown so they gave us a hotel in Fort Worth and we stayed the night.  They were all out of their 'normal' hotels and wanted us to find our own and then mail in for reimbursement until Stephanie started getting argumentative and, what do you know, here is a hotel!  Well, we stayed the night and then flew out Tuesday morning, hitting NOLA just one hour before our clinic appointment.

I have also had some issues with my G tube over the past week or so with bleeding and a little irritation at the site.  The pain grew tremendously this last weekend to the point where I was taking 20mg morphine as soon as it was allowed on my prescription.

When we got to Baton Rouge and got our luggage, I went to change the dressing on the G tube and it was obvious that the balloon that was supposed to hold it in place had deflated some and it was coming out.  So, the pain was due to the opening being forced open more than it should.  I was able to push it back in and then tape it in place and the pain has been mostly abated.

The final curveball is that they are just going to admit me to the hospital today.  Then they will re-inflate the balloon properly and get me started on Sandostatin right away to try and reduce the risk of Carcinoid Crisis.  Stephanie will stay the night at the Hope Lodge and then stay the night in the hospital room Wednesday night before the surgery on Thursday.  Dr. Boudreaux is on call this weekend as well so it is nice that he will be available.

Starting Thursday, I won't be able to post for obvious reasons so I will refer you to Stephanie's caringbridge where she will be posting updates.

Little over 2 weeks to Surgery!!!!

I got a stunning phone call from Dr. Boudreaux's office this morning making sure that I was all set for my upcoming surgery.  I stammered for a bit, not really knowing what to say because I didn't know I had an upcoming surgery but was excited at the thought.  Well, I have surgery scheduled for June 23rd, probably at 8am with a clinic visit on June 21st.

Wow.  Just Wow.  I had feared that this day would not come.  I was planning for it but a significant part of me believed that it just may not happen now matter how hard I wished and hoped.

Well, now it is coming.  In two weeks we will be on a flight to Baton Rouge out of Colorado Springs on our way to the next chapter in our lives.  We meet with Dr. Boudreaux and the anesthesiologist on Tuesday the 21st with a 1:00 appointment (I expect we will actually see him about 2:30) and then spend another two days waiting for the morning of the 23rd.  I expect this will be a LONG and extensive surgery.  If it is less than 10 hours, I would be very surprised and 14hrs is my guess as to the length of time it will take.

I hope to come out of surgery non intubated but, if I am, I have a request to be sedated because the true days of insanity I experienced last time are almost unbearable.  Those days still frighten me to this day.  By the 30th of June, I hope to be out of the ICU and up on the main floor.  Hopefully, around that time, I will be allowed to start the progression of the liquid diet through full liquids and then unrestricted.

What this means is that I may actually be eating by the 4th of July and maybe coming home later that week.  It seems to close now.  I just had a celebratory otter pop (poncho punch) and can just imagine having real mashed potatoes, corn on the cob and watermelon where I don't have to spit out the pulp.

So, my wish list for food?  It is fairly broad and some things may seem simple or ordinary but I look forward to much of that.  I look forward to the simple pleasure of guzzling a soda or grazing in front of the pantry or fridge.  As to the actual list, here you go (I also will take suggestions for things I missed!!!!):

Items with an asterix are things that we can/will make at home.

• Brunch someplace
• Chipotle chicken fajita burrito
• Chipotle crispy chicken tacos
• Sesame chicken
• Chicken Pad Thai
• Ribeye (medium rare), loaded baked potato and corn on the cob*
• Sweet and sour chicken with basmati rice*
• The chicken kabobs we had last year with grilled pineapple*
• Fresh pineapple*
• Chimichanga (ground beef)
• Big mac, fries, and a coke
• Fried chicken sandwich with lots of mayo
• Lobster
• Crab
• Shrimp
• Firehouse subs
• Bbq ribs at Bird Dog BBQ
• Rocky road ice cream
• Snickers blizzard
• Enchiladas (cheese, chicken and ground beef)
• Breaded schnitzel
• Pizza.  New York style, deep dish, Beau Jo’s amongst others...
• Popeyes fried chicken, mashed potatoes and gravy
• Steak diane*
• TGI Friday’s Jack Daniel’s steak and shrimp
• Experiment with cooking different kinds of mushrooms*
• Sea Scallop Risotto at Biaggi’s
• Wings (Try Alton Brown’s good eats method)*
• Cotton Candy grapes  (In Sprouts August/September.  Just want to try them)
• Salad with candied almonds and mandarin oranges*
• Grilled pork New Orleans with twice baked potatoes*
• Las Vegas:

• Bobby Flay’s Mesa Grill
• Joe’s Seafood, Prime Steak, and Stone Crab, maybe for lunch
• In and out burger
• Hash House a gogo (breakfast)
• Original Pancake House:  Dutch Babies, pigs in blanket, strawberry pancakes.
•  Chicken fried steak, mashed potatoes and corn (Cracker Barrel maybe)
• Tacos*
• Watermelon
• Fresh strawberries and vanilla ice cream
• BLT with extra bacon*
• Lasagna*
• Cuties
• Beer, cheddar, and bacon soup*
• Donuts!  There are two new donut shops in Colorado Springs area and I want to try them
• Philly cheese steak sandwich with grilled peppers, onions, mushrooms and cheez whiz.
• English muffin, toasted till crispy with lots of butter and strawberry jam
• Toasted blueberry bagel with lots of butter and cinnamon sugar
• Blueberry muffin with lots of butter
• Macaroni and cheese with applesauce
• Taquitos
• Olanthe sweet corn on the cob with butter and lightly salted
• Churros
• Tortilla chips and salsa (perhaps the pico de gallo that Steph makes) but Chilli’s has great chips
• Roast beef, cooked for hours with mashed potatoes, gravy, yeast rolls, and glazed carrots*
• Jersey Mike’s Italian sub
• Tamales with green chili
• Hot buttered popcorn
• Red Robin Bleu Ribbon burger
• Red Robin Whiskey River BBQ burger
• Apple hand pies and Blueberry hand pies.  Fruit empanadas essentially. Frosted
• I want to try duck
• Grilled tunafish sandwich with a dill pickle, chips and french onion dip*
• Egg salad sandwich with crisp lettuce
• Corn dog.  Perhaps the mini corn dogs at Buffalo Wild Wings.
• Perhaps an afternoon/evening with lots of sharables at Buffalo Wild Wings…
• Potato skins*
• Rootbeer Float*
• Roast beef, pepper jack, dijon, lettuce, tomato, mayo, red onion, banana peppers, on onion roll
• Pancakes, bacon and sausage

Numbers are still good but I am struggling

Another drop in Alkaline Phosphatase this week but it was only 40 points while previous weeks were around 200 points.  This does point to the three days a week of lipids in my TPN causing my liver to struggle and I am just hopeful that the numbers continue to drop.

Physically, I am starting to struggle again.  My weight is now down to 143 and the abdominal cramps have picked up in their intensity.  Dr. Boudreaux asked if I could try eating more so I have increased my consumption of juice but this seems to have just caused more cramping and, now, the occasional vomiting.

The three weeks at 1450 calories/day have caught up with me and the fatigue is really settling in.  When I get lipids in my TPN, I get a boost of a few hundred more calories but that is still well below what a 6'3" guy should consume in a normal day.  I don't know what to do at this point and may check with the TPN folks to see if I could get a second smaller bag every day for another few hundred calories of at least carbs and amino acids.

So I struggle.  Every day is an effort from the time I get up till the time I go to bed.  Every night brings its own issues with the cramping waking me occasionally and my micro bladder waking me when my stomach is leaving me alone.

I still think of food continually and my list of "When I can eat" is fleshing out.  If I ever get to the point where I can eat again, I will publish it here.  Some of the latest additions include a rootbeer float, a corndog, and a grilled tunafish sandwich with pickles, chips, and some french onion dip.  Crushed ice just isn't cutting it for me any more but it does keep my mouth and throat from getting too dry...

I do have better days but the number of tough days are increasing.  I need to get through this.  I just want some relief.  I just want to feel normal for a little while again.  Perhaps those days are long gone but I hope not.

Officially a trend now

Four straight weeks of dropping Alkaline Phosphatase and there is no denying it now:

April 25: 2015
May 02: 1414
May 11: 1126
May 17: 937
May 24: 709

It is still a ways to go to get to normal but there is no denying the improvement that we are seeing.  It should also be noted that this week's improvement was in spite of adding in one day of lipids.  Now I didn't expect the one day of lipids to cause a problem but it is also good to know that we can continue to increase the lipids, putting us on track for surgery.

Not all my labs are good.  My Hemoglobin has now dropped to 9 and we have been striving to keep that above 10.  I see my nephrologist in about two weeks but we may need to address the anemia a bit sooner.

Also, my prealbumin is just 16 this week.  This shows, to some extent, my level of nutrition.  That needs to be improved before surgery as well because it is something that relates to overall strength and ability to survive and recover from surgery.  I have been running in the low normal range for some time (20-24) but this dip to 16 is dramatic and demands some attention.

So, I am on the path but still have some work to do.

Surgery is at least 5-8 weeks out.

Spoke with Dr. Boudreaux and he is go for surgery but needs me to be more nutritionally solid.  To this end, I need to be on lipids for 3-6 weeks before scheduling a surgery date.  I don't know what we do if my numbers start to climb again and I don't know what we do if I don't tolerate the lipids.  I just know that we now have at least a limited plan on file for doing surgery sometime this summer.

Yea!  NOLA in July.  What could be better?  Of course, I would eventually get to eat but just think of poor Stephanie and 90 degree days with 90% humidity....

So we wait again but we are waiting with a plan for moving forward and that is better than before.

Does three weeks make a trend?

Liver markers continue to improve.  AST and ALT are now smack dab in the middle of normal (high normal last week) and Alk Phos as dropped again to 930.  Normal for Alk Phos tops out at 125 but this is a drop of about 200 in the last week.  I have left a text message with Dr. Boudreaux, passing on this information and asking to speak with him, hopefully to discuss a plan for surgery.

I am almost afraid to hope that this will happen.  I have been getting yanked back repeatedly over the last two months and I just don't want to start anticipating something that will get put off again.  I know my liver numbers are improving but, at the same time, I have lost some of my strength due to the lack of calories.  I need both before we have surgery and need to see them both improve.

As to the calories, we are going to start trying a bit more with the TPN.  It is very limited but we will be doing one day with lipids and see if my markers continue to improve next week.  I am taking in a small number of calories orally but it is probably less than 100 calories/day that stay down.

So, another week of waiting.  I do get to see my daughter graduate high school tomorrow which will be a highlight of my month.  All I can do otherwise is just to hang tight and hope for continued good results which will lead to a plan.

Tentative liver improvement

Over the last two weeks, I have seen improvement in my liver markers.  The alkaline phosphatase has improved from 2000 two weeks ago to 1400 last week and then 1100 this week.  The ALT and AST markers have also improved and are now sitting right in the normal range.  I also had a liver biopsy earlier this week to see if we could identify anything else amiss an it came back only showing that I have carcinoid cancer.

There is good and bad in these results.  The good is that I don't have autoimmune hepatitis and I don't have hereditary hemocromatosis so we don't need to worry about those anymore.  The bad is we still don't really understand why my liver numbers are misbehaving so badly.  The MRI I had three months ago showed just 20% liver involvement but there is always the possibility of tumors that just aren't showing up on that scan.

We also don't know why it has been coming down.  For the last two weeks (and next week as well), I have been running with TPN without lipids which is basically just glucose along with amino acids (protein).  At 1450 calories per day, this is a slow starvation and I obviously can't continue this way for terribly long.  They did find some high levels of trace elements in my system and have removed some of those from the TPN but we just don't know what change is making things better.  Are the TPN changes even affecting what is going on? 

I have been taking a new medicine called urodoil which is primarily given to help clean up gall stones or sludge but I don't have a gall bladder and my bile ducts are clear.  I have eliminated almost all the supplements I have been taking as well which cannot continue in the long run because of my kidney disease.  Is the new medicine helping or is the lack of supplements helping?  How do you know without starting or stopping as appropriate and risking the numbers going back up again?

So, what do we do now?  I wish I knew.  I haven't spoken with Dr. Boudreaux (biopsy results will be faxed down there tomorrow) and know he will want to see continued improvement.  He was also of the opinion that my cancer was not taking over the liver but what can you say at this point?  How do you really know without opening up and taking a peek?

So, onwards we go with a continuation of the uncertainty.  Cancer is waiting for the current results.  Waiting for the next time you get tests.  Waiting till you can start a new phase of treatment.  Waiting, Waiting, Waiting.  I just want to know what to expect and what to plan for but all this uncertainty is clouding the crystal ball.