This morning, a story ran on NBC’s Today Show. It was about a young lady named Gentrie Hanson, who has gastroparesis, the same rare condition I’ve been diagnosed with.

You can click here to watch the feature.

While my experience is mine alone, it’s always good to know that you’re NOT alone! I also haven’t had as extreme of an experience as Gentrie has, especially in term of nutritional support.

Her story, so far, ends happily, with the installation of a gastric pacemaker. She is getting healthier and gaining weight, and it has been a successful procedure for her.

I posted the link on my Facebook page and received several comments from people hoping I can get the pacemaker. However, I clarified that I am not a candidate for it. My weight has been stable for a couple of months now, even though I am not symptom-free and still struggle with taking in enough calories with the daily nausea and abdominal pain.

The nausea and pain are not as intense as they were through about mid-late July, but they’re still daily. My diet is pretty much soft foods, low fiber and low fat. The smaller the portions, the better the result. So, I try to eat smaller meals more times per day.

Anywho, just thought I’d post the link to this story. I am happy to see this rare disorder get some press and awareness.

Saw my doctor at Cedars-Sinai today for results from last week’s tests, which all showed no abnormalities. That’s good news!

From here, he sees no reason for further testing. He is calling what I have “post-infectious gastroparesis”, believing that it was most likely brought on by whatever virus I was fighting the week after Christmas.

In the long run, there is no cure for it. Our hope is that it eventually goes away and the stomach begins working normally again, but it may not. The only treatment is through diet and nausea medications.

Knowing I’ve tried the gamut of nausea meds, he is recommending using a couple of them simultaneously. He also said the symptoms may worsen again with a virus of any kind, so I’ll need to be careful about colds and flu.

While I certainly don’t relish the thought of a long term battle with this, others have gone through much worse. Colleen has battled chronic pain from lupus and rheumatoid arthritis for 15+ years. She is my hero! I have nothing to complain about!

Onward and upward!!

Just finished my follow-up appointment with the Cedars-Sinai doctor. We’re navigating the traffic on the way home right now.

The results of my gastric emptying study done on August 6 show that I have “severe” gastroparesis. However, I learned that the severity of the condition does not always corrolate with severity of the symptoms.

He said that the gastroparesis is most likely the “post-viral” type, but he is ordering more tests to see if he can nail down why I have it. It’s still possible we may not be able to find out how it came to be. However, he believes it’s important to do everything to find out why since it’s rare for a male to get gastroparesis in my age group.

My blood work also showed an elevated level of something called Chromogranin, which does NOT mean there IS presence of a hormone-producing tumor, but indicates the possibility. So, I had another visit to the lab for more blood work drawn for further study.

The blood work is not conclusive for this, so he is ordering a couple more tests that have been scheduled for next week. One is called an Octreotide Scan, and it happens over 4 days.

On Tuesday morning, I’ll have an injection, and that’s Day 1. On Wednesday afternoon, I’ll go through a one hour scan, and that’s Day 2. Then on Day 4 (Friday), they’ll do another two hour scan in the morning.

Then, on Saturday morning, Aug. 28, they’ll do an MRI/MRA.

Finally, on Tuesday, Aug. 31 at 3:00 pm, I’ll have the follow-up appointment with the doctor for results of those tests.

That’s the info for now!

The long, but good, weekend, started too early for my taste on Friday morning when the alarm went off at 5:00 am. Colleen, Jonathan and I headed out at 6:30 for Cedars-Sinai Medical Center.

I went through my first test with them in this gastrointestinal journey I’ve been on for the last 7 months. The Gastric Emptying Study started at 9:00 am with a very bland and literally radioactive scrambled egg white sandwich.

From there, I laid on a table for an hour while the nuclear scanner sat above my stomach taking continual images of the passage of the sandwich. Then, I had a one hour break and had to come back for a one minute image. Then I had a two hour break and had to return for a final one minute image.

I spent the breaks sitting at the Beverly center Mall across from the Medical Center, reading a good novel. While I was doing my thing there, Colleen and Jonathan had breakfast at Patrick’s Roadhouse in Santa Monica and hung out at the Santa Monica Pier and 3rd Street Promenade.

I have an appointment with the Cedars doctor on Thursday, August 19 at 11:30 am to hear the results of the test and some blood work they drew a couple weeks ago.

When I was done at around 2:00 pm, they picked me up and we made our way to Temecula. Spent the night with friends, who traveled with us to Camp Pendleton for Josh’s graduation from the Marines Devil Pups Boot Camp. It really is quite an honor for young people ages 14-17 to complete the rigorous 10 day program, and they join a pretty prestigious list of leaders who have done so in its 50+ years of history.

Here are some pics from the event:

I was really glad to be able to have my Mom & Dad attend, along with my sister, April and her husband, Tom. Mom & Dad are leaving for home on Wednesday after their 7 week visit.

After the ceremony, the boys and I headed back to Temecula with our friends and Colleen headed home with April to help a friend at her daughter’s wedding that evening.

On the way back to Temecula, Josh wanted to stop at In & Out. We obliged, though I am still not eating anything fast food these days.

We went back to Temecula mostly because Josh has badly wanted to go airsofting at a field called Jericho. They used to have a field in Simi Valley, but it closed several months ago. They opened one in Lake Elsinore, just north of Temecula. So we thought this would be the perfect time to get him there.

However, when we got up to get ready to leave early this morning to get him and one of his friends from here over to Jericho, he announced they weren’t going!! Apparently, he was missing a critical (at least to him) piece of equipment. The lack of it was going to make it too much of a bummer of an airsofting day! He didn’t seem too disappointed, making me wonder if he was really just too exhausted from Boot Camp to go airsofting for the day.

Stomach-wise, the weekend hasn’t been too bad. Nausea was pretty prominent on Friday and slightly less on Saturday. Today was the best day of the weekend. Nausea was lower and cramping slightly higher. I wish there was a way to forecast this, kinda like the weather, ya know?

We’ll head back home tomorrow (Monday) around mid-day, and plan on spending the next couple evenings with my parents before they head home on Wednesday.

Hope your weekend was restful!

I just now heard back from Cedars-Sinai. My Gastric Emptying Study has been scheduled for next Friday, August 6 at 8:30 am at Cedars. The follow-up appointment with the doctor for results will be on Thursday, August 19 at 11:30 am. I’ve asked them to put me on a list for cancellations to see if I can get a follow-up with the doctor earlier than August 19. We’ll see!

Met with my regular doctor this morning for follow-up on some other testing he did to chase down some possibilities for some of my symptoms and they all came out fine.

On another note, we heard today that Josh’s spot for the Devil Pups Boot Camp has been secured! We drop him off in Pasadena at 7:00 am tomorrow. A bus will take he and the other “Pups” to Camp Pendleton from there. We’ll attend his graduation next Saturday, August 7 at noon.

I am looking forward to taking the weekend with friends in Temecula then as well. We haven’t done any real “family vacation” together this Summer yet, so that should be a good break for us all.

The long-awaited consultation happened today at Cedars-Sinai Medical Center in Beverly Hills. We don’t know much right now as far as what I’m battling.

The doctor seems pretty thorough, and after a lot of explanation of symptoms, questions and answers, the next step will be a run of blood work and his own gastric emptying study.

I’m waiting to have blood drawn as I’m writing this. The gastric emptying study is different from the one I’ve already done. The Cedars study will take about 3-4 hours. I should know when that is going to happen in the next day or two.

The doctor is suspicious that I may not have Gastroparesis for a number of reasons, including the volume of weight loss (70 lbs in 6 months) and that gastroparesis happens much more commonly in women than men. So, he’s not convinced that’s what I’ve got, but this more thorough gastric emptying study will tell us.

That’s where we stand right now. I’ll keep you posted on the schedule as we know it. In the Lab waiting room, they have you take numbers. I’m #81 and they just called #70!! We may be here a while!

Cannot believe we are on the last full weekend of July! Cannot believe it has been 6 weeks since my gall bladder was removed! Cannot believe I am still having symptoms I had prior to the surgery, meaning that the gall bladder was not the problem! Cannot believe we are only 1 month away from the school year starting! Cannot believe it is only 154 days til Christmas!

In some ways , this year has flown by, yet in other ways, it seems to be crawling slowly. Do you feel that, or is it just me?

Last weekend, we drove up to Bradley, CA on Friday to attend Josh’s Sea Cadets Boot Camp on Saturday morning. We missed him a ton over the two weeks and were very excited to be there for this big day. We were just as excited to bring him home!

If you’d like to read more about his experience, one of his fellows shipmates in his company has published a website. Click here to see it.

Here are a couple of pics of the event:

It was a full weekend as we drove home after the graduation, arriving around 6:00 pm. On Sunday, I spoke at church for the first time since my gall bladder surgery 6 weeks ago. It went well and was very refreshing.

Honestly, one of the hardest things about the last 6 months with my health issues has been feeling like I am not doing my job or pulling my weight with my inconsistent preaching schedule. Sometimes, the nausea and abdominal pain has been disruptive enough that it’s been hard to concentrate or focus enough to put my message together. Other times, I’ve literally had to have someone else step in almost last minute because a Saturday or Sunday will be that disruptive for me physically.

I do feel some strength slowly returning in the last couple of weeks, so that’s good and encouraging. I also haven’t lost weight in three weeks. Another hopeful sign. I’m definitely not where I want to be, but some progress is always hopeful.

Looking back on the last 2-3 months now, I can say that even though I am still struggling with the nausea and abdominal pain (as well as some other symptoms) daily, it is not as intense as before the gall bladder was removed. Now, I can look back and see how the gall bladder would have been complicating and exacerbating the symptoms.

I had good days on Monday and Tuesday, and even made it to our weekly Pastor’s Prayer Meeting on Wednesday for the first time this year! However, Wednesday afternoon, Thursday and today (Friday) have each been progressively bummer days physically. I’ve had worst days though, and there’s much to be said for that!

On Tuesday, I have my appointment at Cedars-Sinai in L.A. at 12:30 pm. I hope to have more info after that appointment. I also see my regular doc on Wednesday morning for results of some additional testing he had run to try and chase down more possible causes of some of the continued symptoms.

On Thursday, we’re taking Josh to Pasadena to meet a bus at 7:00 am that will take candidates to Camp Pendleton for a 10 day Marines Devil Pups Boot Camp. He doesn’t have a secured spot, but is hoping there will be enough no-shows to allow him to go.

If he gets a spot, we’ll be attending another Boot Camp graduation on August 7 down at Camp Pendleton. We hope to make that weekend a mini-vacation down in the area with some friends. We’ll see what happens!

I think the title of this post is an appropriate one for how I feel today in a few ways.

First, we leave tomorrow afternoon to drive north to attend Josh’s Sea Cadets Boot Camp Graduation and bring him home. He’s in the HOME STRETCH of his experience and we’re in the HOME STRETCH of missing him!

A phone call this morning indicated he will probably have a good chance at getting in on the Marine Devil Pup Boot Camp July 29- August 7 down at Camp Pendleton in Oceanside. He is really excited about that one too.

By the way, here’s another pic of him that showed up on the website, learning knot tying:

Josh is the one on the right.

Then, regarding my health. My surgeon said on Monday that if I’m still having nausea and abdominal pain this far out after the gall bladder surgery, then the problem these last months was not caused by the gall bladder. The gall bladder went bad because of whatever else I am fighting.

Yesterday, I saw the GI doctor, who I think has done all he can with me. He feels since my weight has stabilized the last two weeks (which is a good thing, though I usually plateau for a couple weeks before dropping more), I am getting better and he’ll see me in 8 weeks.

Well, in two weeks, on July 27, I have my appointment with Cedars-Sinai’s GI Motility Unit. I am hoping I am in the HOME STRETCH of dealing with this and hope to get more definite diagnosis and treatment, though it may take a while to get there.

Lastly, most who read my blog know that we are in construction at the church facility, doing a major remodel of the Sanctuary and many of its systems (structural, electrical, HVAC, etc.).

While we went through some trials with the city January-May, we finally started construction on June 1, and it has been moving very fast the last couple of weeks. The Contractor is trying to get us back into the Sanctuary in mid-August, only a month from now.

With so much happening there, I feel like we are in the HOME STRETCH of getting this thing done! That’s a good feeling, though there is so much more to do. If you’d like, you can see pictures at our Facebook page by clicking here.

We’re finally hitting a bit of heat this Summer after a very mild start. Having our first 100 degree day today!

A week ago, we left on Saturday to check  Josh in at his Sea Cadets Boot Camp on Sunday at Camp Roberts, 200 miles north of here. You can see my last post for details on that. In the meantime, while we haven’t heard anything from Josh (and don’t expect to), there’s a website where they are posting pictures of the experience. Josh has shown up in a couple of them, so I thought I’d post them here:

These recruits are waiting for their check-in processing. Josh is the one without his "cover". He forgot it, and paid for it with the DI's almost immediately! I don't think he'll be forgetting much stuff after this experience!

Here the recruits are waiting in line at chow hall. If you count heads in the picture, Josh in the 9th one back.

It was tough to leave him there, and we miss him around the house! Needless to say, we are really looking forward to the trip next Friday and Saturday to attend his graduation and bring him home! He graduates on Saturday, July 17 at 11 am.

After leaving him there, Colleen drove us (I wasn’t feeling all that well after Saturday’s drive) leisurely down the 101 with a couple stops in Paso Robles and Pismo Beach. Being the 4th of July, Pismo was PACKED!

We arrived at our next stop at the Motel 6 in Goleta about 6:30 pm. We had planned to meet some friends who have a family tradition of Santa Barbara fireworks for the 4th of July. However, Jonathan really didn’t want to do the fireworks show.

So, the modified plan was for me and Jonathan to hang together at the motel and Colleen to go meet the friends. Well, that plan got modified by our exhaustion.

We were so tired by the time we got to Goleta that we just napped while Jonathan enjoyed the cool and retro styled Motel 6 (never seen one like that before) and the flat screen TV. Even Colleen decided to forego the fireworks!

On Monday morning, we drove to Solvang, where our friends were staying. Colleen and the wife of the couple took off for a pre-planned night in Avila Beach. Jonathan and I hung with the rest of their family at their timeshare in Solvang.

He and I were going to drive home that evening, depending on whether or not I felt up to the drive. Jonathan initially really wanted to go home for some reason. However, by the time I felt up to trying the drive around 9 pm, he decided he wanted to stay the night, so we did.

On Tuesday, Colleen arrived back around 3:00, and we made our way back home.

Health-wise, the weekend travel wasn’t real easy, but I wasn’t going to miss the trip to take Josh up no matter what. It was worth it. I want him to always know that I am willing to do whatever it takes to help him make his dreams a reality whenever I can.

Tuesday and Wednesday were fairly good days. They weren’t without nausea and stomach pain. There were ups and downs, but they were relatively mild.

With my parents in town and currently staying at my sister’s place, we’ve been spending as many evenings over there as we can, which we did Wednesday night. Around 9:30, Mom came down with some severe pain in her left jaw that wouldn’t go away.

My sister took her to the ER and stayed with her until about 12:30 am. I took over from there, driving her home when she was released about 4 am. They checked out her heart and all was OK. They sent her home with some antibiotics in case of infection and some Vicodin for pain, recommending she see a dentist of the pain returns.

Thursday and Friday were rougher days for me physically. I saw my regular doctor Friday morning for a follow-up to surgery and other things. He is moving forward on testing for additional issues over the next 2 weeks. We’ll see if that turns up anything.

The gall bladder surgery was four weeks ago now. The incisions have healed pretty slowly. They’re all still fairly tender, especially later in the day. The doctor thinks that may point further to a possible auto-immune condition, as those tend to cause slower overall healing to any wounds or injuries.

The nausea and stomach pain when I eat is still present, seeming to indicate that the gall bladder going bad was a byproduct of whatever has been going on the last 6 months, rather than the cause.

I still have the appointment at Cedars-Sinai on July 27th, so I’m holding out hope that it may start a process of further revelation and help.

That’s about it for now. Hope your Summer is progressing well for you, and that it’s filled with some good down time, rest, refreshing and family time!

I am both proud and nervous about this weekend! Our oldest son, Josh, who is 15, is embarking on quite an adventure.

On Sunday, we will check him in at Camp Roberts, just over 200 miles north of here, where he will begin his two week stay for a US Navy Sea Cadet Recruit Training Camp. It’s BOOT CAMP!

We’re so proud of Josh’s initiative this year to become a part of this stellar program run by the Navy for teenagers. He goes to Port Hueneme two Saturdays a month for a day long “drill”. The recruits and cadets are taught military style and structure, as well as a ton of practical skills, all of which lean toward building their character as citizens.

He is very excited about it, and we’re excited for him, but as a Dad, I’m not sure the two weeks will go by fast enough! We’ll go back up for his graduation on Saturday, July 17 and bring him home that day.

Interestingly, we are still waiting back to hear from the Devil Pups organization, which runs a 10 day Boot Camp at the Marines Camp Pendleton Base in Oceanside. That one runs from July 29 – August 7. That also has been his initiative!

On the way back from Camp Roberts, we plan on stopping in Santa Barbara to meet up with some friends who will be there for 4th of July Fireworks. Rather than fight traffic on the way back, we’ll stay the night and drive home Monday.