Next stop Mayo Clinic?

I know, shame on me, I’ve neglected my blog….

I have a bad habit of postponing an update until I feel like I have something of significance to report and then I have to spend time catching up on the details.

Let’s see….what’s new?

Cat scan seemed to indicate a possible obstruction forming but additional cat scan did not show any problems.  Lung nodes were discussed by pulmonologist and she said they were on previous cat scans and not “new” (GREAT NEWS!  I feel relieved.).  She agreed that a 3 month followup is a good idea just to verify that there is no growth.

My primary care doc and the GI specialist have been doing research (GI says he has spent more time in library in last week then he has since med school days).  His research revealed very little has been done in the last fifteen years related to my issues.  He believes that I am experiencing two separate medical issues – slow motility of the intestines and esophageal spasms.  Both need to be resolved before “normal” eating can be expected.

My primary care doc has checked with other local medical centers and reports that there are no local specialists that can offer more than the specialists I have already seen.

They are both recommending expanding the medical resources to include the Mayo Clinic, the Cleveland Clinic and another Ohio facility.  Once they make the connection, they will send my medical records and then, I suppose, I will make appointment provided that someone out there has a treatment option.  The GI suspects that part of the fix might involve additional surgery but he agrees with me that there needs to be some strong indication that surgery will have a definitive impact and is not simply experimental.

In the meantime…eating.

I can eat a few bites of food every few hours and it stays down.  If I go beyond a couple bites it either comes back up or it sits like a rock and causes discomfort for a few hours.  I find that my taste buds seem to be dulled due to the bile vomit.  Food is not very appealing for the most part and I am challenged to find things that I feel motivated to try to eat (sweets taste rancid).  I do the chew and spit with the boys during dinner so we maintain the “eating as a family” routine.  I am very discrete at the chew and spit (either that or they are used to it – very little complaining anymore).

Liquids are still a no-go.  I still try each day on the advice of the GI but each day it is the same reaction – as soon as I swallow the liquid comes back up.

Salty/crunchy seems to be my best bet.  Seafood is acceptable as are avocados.  Fresh fruit/veggies are a no-go (to hard to digest).  Beef/pork/chicken are all bad choices.  Rice/oatmeal are okay in very limited quantity.  Bread is a no-go due to lack of saliva.

What bothers me most is the lack of being able to parch my thirst after eating.  I’ve tried “rinsing” my mouth with liquids and spitting out but it doesn’t offer the same satisfaction as actually drinking.  I’ve had limited success with popsicles but even that is not the same as drinking.

I’ve started walking.  Okay, so I’ve only gone twice this week but I plan to continue with my goal to be every weekday morning.   I didn’t realize how low my energy level was until I started walking.  It’s going to take me a while to build up my endurance but I am committed to this.  At the local sports center they have open walking in the morning so I can’t use weather as an excuse.  Even though I am walking alone, there are other people walking so it doesn’t feel like I am walking alone.  The surface is artificial turf so it is very easy on my ankles/hips.  I am seriously thinking about volunteering at the local animal shelter as a dog walker so I can walk in the afternoon and get a warm fuzzy at the same time.  I will be calling them this afternoon or tomorrow to see if that is even an option.  Who knows maybe I will even explore making a little money by walking dogs.

I am waiting for approval from the state for medicaid.   Even with a monthly spend down this should help some financially.  Hopefully it won’t take too long for approval.

Well, that’s about it for today.  I need to go run an errand and then I am planning on doing a little writing (submitting a story for publication in a book!) and a little sewing this afternoon.  I am going to try to make it through the day without a nap.

Oh, for those of you who have cable there is a show (I don’t remember the channel – not a premium one because we only have economy cable) that I recommend watching.  It’s called “Kill it, Cook it, Eat it”.  My older son (age 16) and I have been watching this and it is very interesting regarding the food we eat.  The beef, chicken and pork ones are a must-see.  Because of this show, he has become very aware of what he eats.  He is enjoying more seafood, tofu, fresh veggies and less of the “gotta have a big hunk of meat at every meal” mindset.   He also enjoys planning and making meals with me.  It’s been a good bonding experience.   My 13-year old son on the other hand will eat anything/everything available – his appetite is amazing.  He practically eats non-stop from the time he gets home until just before he goes to bed  (he is very fortunate to have a high metabolism so he remains thin).  He makes up for what I don’t eat.

Well, damn

Tuesday (March 1st), I had appointment with primary care doc. This was first time seeing him since surgery in January.

I asked him if he could tell me more about the procedure I had last week. I explained what happened from my point of view and wondered what the specialist had to say. Imagine both of our astonishment when the only comment from the specialist was “patient gagged so procedure was stopped”. Like DUH! the doofus knew going in that liquids don’t go/stay down. I even mentioned to him before the procedure that I would do everything possible to keep the liquid down for the procedure to be most accurate. THE WHOLE PURPOSE OF THE %$&*#@ PROCEDURE WAS TO FIND OUT WHY LIQUIDS WON’T STAY DOWN. My doc sent him an email asking for more details….sigh

In the meantime, my doc is going to be reaching out to GI specialists at other local medical facilities. He agrees that it is time to expand our resources.

He also gave me some slightly (I say “slightly” because I don’t want my mind to go wandering down some path that isn’t necessary at this point in time)…now…where was I? Oh yes, the slightly unsettling news. Seems in my catscan on Feb 9th they noticed some small nodules in the lungs that weren’t there previously. They are small (5mm and 3mm) but still a little worrisome and they want me to have a repeat catscan in 3 months just to watch them.

As I might (or have I?) mentioned, I was diagnosed with sarcoidosis in August 2008 (although suspected by one doc in 1991 but that’s a whole ‘nuther can of worms we don’t want to open today). I have the non-pulmonary form of this uncommon disease.   The concern is that it might be progressing to the pulmonary form which is not very good new at all. The other concern that I don’t even want to post about is that it could be “c”. The type of cancer I had in stomach is a nasty little bugger and there is no obvious reason why I ended up with stomach cancer. It was a bad luck of the draw or some horse poohey like that. So, it is not entirely out of the realm of possibility that this could be that little bugger showing up somewhere else in my body.

For the record, I have enlarged nodes all over my body from the sarcoidosis so it is most likely it is related to that and not the other thing. I have a 6-month followup with my pulmonologist in two weeks so I will be able to get a better sense of what her opinion is about the nodes. In the meantime, I am not going to get all worked up about them. What was it that the wise Dalai Lama said… “If you have fear of some pain or suffering, you should examine whether there is anything you can do about it. If you can, there is no need to worry about it; if you cannot do anything, then there is also no need to worry.”

Just in case you are curious about sarcoidosis or think you have heard of it but not sure – it is the disease that killed football player Ryan White and comedian Bernie Mac.  It is not always fatal but it can be an unpleasant companion.  Like many diseases its origin is little known and, like stomach cancer, I don’t fit the profile.  It’s symptoms can be treated but there currently is no cure (sound familiar?).    So far (crossing fingers, eyes, legs and the bat-wing arm flaps) I have mild symptoms.  I have enlarged lymph nodes which can flare to painful nodes, night sweats a few times a week, fatigue, and ankle/hip/finger joints that can, when it flares, feel like ground glass is between the joints.  Thankfully, the joints have eased up to just a few small shards of glass and I have not had to resort to pain relievers or other medication for a few months.  It is not something I think about more than the odd twinge of joints that occur daily but not nearly as painful as it has been in the past.  I suppose I am used to it or it is simply not flaring.  It does make me more appreciative of the pain that arthritis sufferers have to endure on a regular basis.  I’m told that the discomfort is very similar.

A few informative links on sarcoidosis

http://www.stopsarcoidosis.org/sarcoidosis/diseasefacts.htm

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html

I need to blog about my recent experiments with eating.  But not tonight, check back tomorrow or Friday for that update.

In the meantime, ponder the profound “There are no stupid questions, but there are a lot of inquisitive idiots.“