"Life moves pretty fast...." Guest posting

On Thursday September 22nd we said goodbye to Ronald J Van Iwaarden (1967). Ron will be truly missed; the bad puns, the pointless trivia, and his pure love of anything quirky or geeky.  

Ron was married to Stephanie Van Iwaarden for almost 28 years and his greatest achievement and what he was most proud of were his children Riley (19), River (18), and Forrest (15). He enjoyed absolutely everything about them. After receiving his cancer diagnosis, Ron, Stephanie, and their family tried to embrace and enjoy life and each other as much as they possibly could with sport activities, camping, and skiing.  

Ron’s final days were surrounded by those who loved him the most, Steph and the kids, Ron’s parents, Gary and Joann Van Iwaarden, his younger brother, Doug,  and his wife, Sandy, his older brother, Glen, as well numerous friends.  

Stephanie and the kids, along with Gary and Joann, invite you to join them in remembrance of Ron.  The Memorial Service will be held at Woodman Valley Stone Chapel at 290 E Woodmen Rd, Colorado Springs, CO 80919 on Wednesday September 28th at 2 PM. The memorial service will be followed by a Celebration of Ron’s Life and reception at Hillside Gardens and Events Center 1006 S. Institute St. Colorado Springs, CO 80903 from 3:30 – 6:00. Everyone is welcome to join the family at either one or both gatherings. Ron had wished the celebration to be where people could gather to laugh, love, and share stories and memories.

In lieu of flowers, the family requests donations to be to Neuroendocrine Tumor Program located at Ochsner Medical Center in Louisana -https://giving.ochsner.org/Views/dp/donate/controller.cfm? (use the drop down menu  under Gift Designation and select “Zebra Fund”)

Please bring stories and memories to share at the Celebration.

"Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." Ferris Bueller 1986

So long and thanks for all the fish

Time for one last post.  I stopped receiving TPN and hydration last Friday, 9/9/2016 and the edema has kept my body rolling for a while as it supplied the water I need but that is coming to a close.  I can definitely feel the reduction in lung capacity and it has made it harder and harder to breath.  I need oxygen to maintain a reasonable pulse-ox but the colostomy has been very quiet.

This has been a pleasant passing in that it has been gentle.  I have gotten to see many friends come by and share their thoughts and memories of times at work or play and that has been great.  It is hard to go through some of those memories and harder for them to come here, walking into the pain but that has made it all the more special to me.  Their being willing to overcome the natural inclination of fleeing pain, and hurt is awesome.

For some that has come out as tears rarely expended.  Others are pushed right to that edge and shiver uncontrollably.  Some are stoic in expression but their words tell the story of their feeling.  I have valued every one of these displays of their feelings as a gift to me.

Speaking of gifts, my family has really stepped things up here!  My brother and his wife have been here since last Friday, helping out with everything from yardwork to groceries and it has been incredibly useful to have their assistance.  My parents have been here as well, helping out with the most mundane of tasks, just making things go easier.  My kids have also returned home in spite of classes to be close to me and I have loved being able to touch and hold them.

So, as I sit here in my hospital bed, I am again reminded of the love of people and the importance of forming memories with them.  Get out there today to play with your kids or call them if they are no longer at home. Kids, call your parents RIGHT NOW.  Let them know you love them and are thinking of them.  You may not have the advance notice that I have gotten with my cancer and organ failure.

Enjoy your family and enjoy your life!!

Perforations are tricksy they are...

After a week of decreasing output, things reversed themselves on the weekend and it is obvious that the perforation has not healed.  I spoke (texted) with Dr. Boudreaux this morning and he wants to delay surgery for a while to ensure that he does not create any more holes while trying to fix this one.  I don't know how long it will be but will be waiting another month to get a status.

While we wait, the perforation is doing less than 200ml/day which is not too bad and we are starting a second round of antibiotics to address the infection.  I start 250mg of Keflex 3x/day on Tuesday and hope that it takes care of the abscess.

We have increased the protein in my TPN to try and increase the healing and reduce the edema that I still have.  We have had to start doing an additional 500ml of saline/day to address dehydration and the protein in the TPN may help push the fluid out of the tissue and back into the veins.  If we can achieve that, fluid can then be addressed through diuretics and my unhappy kidneys.

Obviously, this delays recovery more and more.  I don't know what we would do if we didn't have such good health and disability insurance, not to mention a company that is just phenomenal.  Keep me up to date as to what is going on in your worlds and I will continue to update you as to what is going on in my little fishbowl.

Perforation healing?

On July 16th, it was definitively determined that I had a perforated bowel that formed a fistula through the surgical scar.  At that time, it was leaking quite rapidly, putting out several hundred milliliters a day and we captured the output in an ostomy bag which has been difficult to get right.

On August 5th, we addressed an abscess that formed on the left side of the incision and was incredibly painful to the touch.  It ruptured through a different place in my surgical scar and we spent the morning at the doctor's office, draining the abscess and then extending the current ostomy bag to cover both the old fistula as well as the abscess drainage location.  I started on antibiotics to address the infection and am hoping that it heals.

We had scheduled surgery for August 24th in NOLA to repair the perforated bowel but it may be healing on its own.  The amount of drainage has dropped significantly and we are just going to start monitoring and watching it for now.

This puts us in a funny place.  Surgery was not something we wanted but it was a time and place on which we could focus.  Wait and watch is not a fun place to be but it looks like that is what we have to do at this point.  I imagine we will be doing another CT with oral contrast at some point if only to see if it has healed or if the contrast goes into my abdomen or not.

I am still getting about 1900 calories/day from TPN and we just increased the amount of protein that is provided, hopefully to encourage some of that healing.  I am getting a bit dehydrated and that is frustrating because I am also retaining fluid.  Hopefully the increased protein will help strengthen my blood vessels and reduce the amount of fluid that weighs down my body.

I have the G tube connected to a drainage bag 24/7 and look forward to being able to eat something at some point without watching it go directly into the bag.  I have sampled watermelon and grapes using the chew and spit method but was surprised at the amount of seeds and pulp that I still swallow.  We have a new Vitamix, just sitting there, waiting for me to be able to use it and we will be freezing some fruit that I can use in it when I am allowed to really eat.

I have no idea what this means about my recovery as my legs get totally exhausted after a short 3/4 or 1 mile walk.  I can do them but it really beats me down.  I am just going to try and continue to extend my walks and improve as best as I can over the next weeks/months.

Two steps forward, three to the left, one back, two to the left and one back.  At least that is what it feels like.  Hopefully the total output is forward but it is really causing some struggles right now.

Recovery is progressing

I have been home for a little while now and solidly on the path of recovery.  I have been going for walks daily, am up to just over half a mile which is pretty close to my limit and the drainage from the fistula seems to be slowing.  We are struggling with leakage around the ostomy bag that collects drainage from the fistula but we are slowly learning how to manage it.

If this were a normal recovery, I would be quite pleased with how everything is going and would be exploring my limited food options.  We even purchased a new Vitamix before leaving NOLA with the plan of using it to create smoothies, soups and other things I could eat.  As it sits, I am drinking clear liquids of all varieties just for pleasure as they simply drain out my G-tube which is now unclamped 24/7.  It does give some satisfaction but I wish I could do more than just the clear liquids and wish I were getting some calories from them.

The TPN seems to be doing OK at this point with around 1900 calories in each bag and my lab numbers seem to be relatively stable.  My kidney numbers are returning to normal (for me) and my liver numbers are all within normal ranges except for alkaline phosphatase which is high but not the crazy high we had been seeing.

Of course, we need to eventually fix this perforated bowel.  The hope was to do this locally but we have been advised by too many sources to head back to NOLA for the repair.  We don't want to go but at least it will be after Riley and River start off to college, leaving just Forrest home.  We are now looking into how to manage this last little bit.  Forrest may stay with some friends or my parents might come down to help but we don't quite know at this point what we will do.

Stephanie also cannot stay down there for the full time because she needs to be at work as well.  Perhaps she will fly back after I have been stabilized post surgery and come back to NOLA on weekends until I am ready to come home.  I don't know and we haven't really decided on the best path at this point but we will need to make some tough decisions.

Hopefully, the surgery will be relatively quick and easy this time.  We will not be planning a 12+hr marathon to free up the bowels, just get in, reattach, and get back out.  No attempts to remove obstruction, no work on the liver, nothing except repairing the perforation.  That said, a 'quick and easy' surgery for me will still likely be a 6hr affair which is still quite extensive.

Long term, I don't think this is a good sign for the double balloon enteroscopy.  This seems to indicate my bowels are too fragile to handle significant manipulation.  I hope there still is a chance but honestly believe it is not likely an option at this point.  I know it likely means I won't ever eat again but I am slowly coming to the point of acceptance.  I still crave food and I desire eating again but I will find a way around it.  If I am at least able to do clear liquids, that will help a bit with the social aspects but it will still be hard.

Home again, again

I know I have been delinquent in posting but I have had a lot to process and it is difficult to know what to say.  Obviously, there is major disappointment at the failure of surgery in NOLA and trying to understand what that means for the future has been consuming.

We are home now with some odd plans let me bring you up to date.  Surgery failed and there is not a chance of trying again.  Dr. Boudreaux said that this is the first case in fifteen years that has stopped him.  My bowels are simply too encased in adhesions and too fragile to try again and he took it as a personal affront that he was unable to repair me.  My problems are no longer directly cancer related and there is no cancer cure that could be developed to resolve the bowels.

We did leave NOLA with a remote possibility: a double ballon enteroscopy.  This is a procedure similar to a normal eteroscopy but the use of an inflatable balloon allows the scope to inchworm its way deeper into the bowel.  This could allow the placement of stents if the obstruction is found or dilation with the balloon to free up the bowel.

It is a fairly new procedure, introduced just in 2001 and there are doctors in NOLA and in Denver that perform this procedure.  The downside is that adhesions and a fragile bowel can prevent performing the procedure which means no one may be willing to perform it on me.  It can also be done from both ends of the digestive tract so we would probably do that to reduce risk if we can find someone to do it.

So, Thursday, home with a plan to begin investigating this in a couple of months while I recover from this surgery.  Friday, I was feeling weak and had some serious stomach cramps building but I chalked that up to the travel the day before and a poor nights sleep.  Saturday morning started with more cramping but I am used to that with the obstruction but then I felt nauseous and went to the bathroom with dry heaves.  When I stood up, I noticed that the the front of my shirt was wet.  Looking inside, I saw that fluid was coming out of my belly.  Not good.

We quickly gathered things and rushed to the ER and were excited to see that the parking lot had lots of spaces meaning we were guaranteed of being seen quickly.  We got back into a room as I continued to ooze and spurt from my incision which had dehisced.  After two CTs, one with oral contrast, we verified that my bowel had perforated and that it was then coming out the small opening in the incision.

Fortunately the perforation was 'contained'  What this means is that the output of my small bowel is contained to a small area of my abdomen and then it found the weakest point and broke out the incision.  I have continued to drain a large amount of fluid which is very green in color, looking very much like the stuff that had been coming out of my PEG tube and out of the NG tubes I have had.

Dr. Mathis consulted with Dr. Boudreaux and they believe the best course of action is to allow the bowel to head before going in for surgery to repair the perforation.  So, the plan is to take the next 5 weeks at home, allowing the wound to drain and the bowels to become a bit stronger than their current wet tissue paper condition.  At that point, we will have to do another surgery to repair the perforation which will not likely heal on its own.

What does mean?  Obviously, it delays things significantly again.  Surgery is going to be difficult but I am tending to having it here rather than NOLA.  This may give even more indication that the double balloon enteroscopy should not be performed.  I have no idea what it means for the future.  I don't know what surgery will bring and I don't know what it means for our plans.

unsuccessful

Sorry for the lateness of this post but I have been having a time gathering my thoughts.  I had surgery on 6/23 and it did not go as planned.  The scar tissues (adhesions) were extensive, making my intestines look like a brick of flesh.  Any cut that was made was a significant risk and I would even start bleeding from areas that they weren't even touching.  I am inoperable when it comes to freeing up my bowels from their obstruction.

We are considering some alternative solutions.  First, a Baker's Tube was inserted through the old G-tube hold and the hope was that this would work its way down my bowels, indicating where the obstruction is at and, perhaps freeing it somewhat.  Well, that tube pulled back out Monday after surgery, having done nothing.  We reinserted Tuesday but it is just sitting in a coil in my stomach right now.

I still have an NG tube and Dr Boudraux was that in7-10 days past surgery to make sure the walls of the bowel have repaired themselves.  We are considering putting some radioactive dye down the baker's tube and trying to follow where it goes.  If we can identify strictures, we could theoretically put a stent in place to make things better.  We have also discussed haveing a surgery where they try pushing the backer's tube into place for similar reasons but that idea has not been very well developed.

Basically, I expect that I will be coming home no worse than when I arrived other than the additional surgery recovery.  The good part is that I am obviously not dead but the bad part means that there is little hope for the future of my intestines.  I don't know of many more tricks that could be employed to address the lack of eating.  I also don't know how much longer my body will really tolerate the TPN which is necessary to just keep me alive.

Basically, the countdown has started. I have been able to live a live for the past 15 years that has mostly ignored my disease but that is an will no longer be the case.  There are no magic treatments nor any new FDA treatments on the horizon that can address a bowel as scarred as I have.

Sorry for the ending note but I have always pledged to be honest in my assessment of my outlook and my future.

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.

Back to liver limbo

After one week of some wonderful labs, I am back in the red again.  Alk Phos jumped to 2015 from 1780, AST jumped to 153 from 55, and ALT jumped to 244 from 110.

Shit.

I don't know what to say other than this is incredibly depressing.  I imagine the next step will be a liver biopsy to get another look at what is going on but I just don't know.

Shit. Shit. Shit.

Iron overload confirmed and liver limbo no more!

Last week Wednesday, I got a bunch of blood drawn for a battery of tests that were ordered by the Gastroenterologist and we have some good results!

First, the alk phos was up to 2032 which was expected but makes the drop to 1780 this last Monday a bit better than I had originally thought.  I am negative for Hepatitis B and C which is good but I was positive for actin antibody and I don't really know what that means.

I tested positive for the hereditary hemocromatosis which is the gene for iron overload.  It does say that I am likely an unaffected carrier since I only had one of the three mutations but it states that "a small number of people who may have a single copy of H63D ar actually affected.  The Diagnosis of HH should include other clinical clinical findings and ... serum ferritin studies."  The next test in line was serum ferritin and it was 2084 with an expected range of 30-400.

These results, along with the drop in markers when I stopped taking the iron almost certainly mean that I have iron overload.  This is wonderful in that we can get my liver back into shape by removing the iron from my daily meds.  The down side is that I was on iron because of the anemia caused by my kidney disease.  I don't know how we will balance this but at least now we know what is going on and can formulate an attack!

With these results, I can expect continued improvement in the liver markers and that means I will be talking to Dr. Boudreaux in the next couple of weeks and can hope for surgery in late May.  It is such a relief to know the end is in sight.  These last weeks of continued uncertainty have been quite brutal and I am optimistic for the first time in quite a while.

Liver Limbo continues?

Got my blood test results back today and my alkaline phosphatase dropped!  It didn't drop very much (1904 to 1786) but it was a drop.  At the same time, my AST dropped almost back to the high end of normal and the ALT dropped by half (still way above normal).  What changed?  I dropped the iron and the vitamin D starting on Wednesday night.

There is a condition called iron overload that I may be experiencing and it usually expresses itself with elevated liver markers and can be caused by taking supplemental iron.  It can be a genetic condition or can be an induced situation as well.

Last week, I also saw a physician's assistant at my gastroenterologist and they drew 5 vials of blood to try and rule out several possibilities and she was the one who suggested iron overload.  I haven't heard anything from those results but am hopeful that they may reinforce the iron overload theory.  I also have an ultrasound of the liver on Thursday with the hopes that it may be able to identify any issues with bile duct problems or other issues.

We are continuing on with the same 1800 calorie TPN and 750ml of hydration/day.  I had hoped for a greater reduction in the alk phos this week and would have increased the calories if that occurred but that is not the case.

As to surgery?  That is a ways off right now.  I need to see a trend of improvement in the liver markers before Dr. Boudreaux would be willing to talk about things.  That means we have at least two more weeks before contacting Dr. Boudreaux again.  If we schedule surgery, it would probably then be a couple of weeks later which puts us in late May or June, just like last year.

No particular food cravings this past week but I am always thinking of Tex-mex food.  I would love some tacos or fajitas.  A ground beef chimichanga with lots of green chili, sour cream, lettuce and tomatoes would be wonderful.  Chips and salsa, tamales, and chicken, beef and cheese enchiladas all sound wonderful as well.

Stephanie and I have talked about taking a trip to Vegas after I am able to eat again and hitting up lots of great restaurants along with taking in some shows for a weekend.  Having something to look forward to is wonderful although it seems so far away at this point.

That's it for now until I get more blood test results or some conclusive information...

Liver Limbo Continues

Well, the Ambien wasn't it.  It was somewhat of a long shot but it definitely was not the reason for my liver numbers continuing to increase.  As you recall, two weeks ago the alkaline phosphatase was 1147, a week ago, it was 1198, and this week, a stunning 1900.  What the hell?  My bilirubin is just 1.2 but that alkaline phosphatase is just unreal.

What is left?  Well, I take 650mg of sodium bicarb each morning and night and I received that when I was in the hospital.  I am taking 75mg of iron which should not be a problem and I am taking 5000 units of Vitamin D which also should not be an issue.  Finally, I am taking 40mg of lasix every morning but lasix is given to people with kidney and liver failure all the time so it should not be the cause.

What is going on?  Why won't these liver number come back to earth?  They dropped so nicely when I was in the hospital that we were sure it had to be something different that was going on at home compared to the hospital but we can't figure it out.  The TPN formula and rate is the same, the fluids are similar.  I am actually taking fewer medicines that I was in the hospital.  I am not jaundiced and don't feel ill in any fashion other than the fatigue and abdominal cramps (left side, not liver side).

So, I am trying to find out if there is a hepatologist (liver doctor) I should see or my GI doc or what.  This is just starting to be crazy.  Every week my liver acts up is another week I am delayed for surgery.  Another week I don't eat.  Another week of the isolation not eating brings with it.

Think about it.  Someone gets a promotion?  Go out to eat to celebrate!  Daughter graduating from High School?  Senior Luncheon!  Someone having a birthday?  Cake and ice cream!  Leaving work early for drinks?  Lets have some appetizers with that!  Not eating kinda puts a damper on the celebratory, recreational, or social activity of eating...

The food craving for this week is nuts.  I don't like many nuts but pistachios along with cashews (not really nuts but a seed) are the foods that have been running through my mind.  There are other things but those two have been the regular visitors this week.  I still get small amounts of juice (vented through the PEG tube) and the occasional otter pop but nothing of substance.

Liver limbo

When I left the hospital two weeks ago, my liver numbers had improved significantly.  I entered the hospital with an alkaline phosphotase level of 650.  Two days later, it was 750 and a week after that, it hit 1147 and is 1198 now.  Since the numbers dropped so rapidly when I was in hospital, there has to be something different at home that is driving the numbers back up.

One of the prescription meds I take at home but was not taking in the hospital was discontinued last week in the hope that it was causing the rising numbers.  Discontinuing that drug seems to have reduced the rate of increase in the numbers but it has not reversed it.  Another drug I am taking that I wasn't taking in the hospital will be discontinued this week to see if it is the cause.  Hopefully that is what it is because I am getting tired of the delays.

I am currently getting 1850 calories/day in the TPN.  We could raise that but not while we are trying to track down the reason for the liver disfunction.  We hopefully will be reducing the amount of additional IV fluids I am getting as the swelling in my feet and legs is getting fairly significant.

The food cravings continue but I do get to have some juice or other drinks here or there, I just end up venting most of it into the toilet through the PEG tube.  It is frustrating not to be able to use those calories but a few ounces of grape juice or a popsicle does at least give me a small amount of oral satisfaction.

The big question is "When is surgery?" and the answer is who knows.  Until we get this liver issue under control, there is not much point in thinking about surgery.  Dr. Boudreaux wanted the liver to be managed well and to have me stronger but neither of those are happening now.  Right now, I imagine I won't see the operating room till sometime late in May at best.

I am continuing to hang out on the couch, watching TV, reading, and browsing the web.  I usually take a nap every day and am just waiting out the clock now, hoping for these liver numbers to come back in line.

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.

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.