idano Blog Network

As mentioned in my last post I was to have a Supercharged Jejunum Esophagectomy in November. I did have the surgery and it went just fine. I was in the the hospital for about 2 weeks afterward and it has been about 5 weeks since I was released from the hospital. I’ve been back to the doctor for follow ups and according to them I am recovering just fine.

As a part of my overall health management I had my regularly scheduled CT scan last week and it came back clean – no cancer to be seen. As you can imagine this is welcome news. Officially I have now been cancer free for 1 year since it has been that long since my last treatment. I will have another scan in 3-6 months as apart of my overall follow up plan. It is sure nice to be cancer free .

The New Year

I think the nicest thing about going into the new year is that I do not have any procedures scheduled. I don’t have any tests scheduled. I don’t have anything wrong with me that leaves that little bit of uncertainty in the back of your mind. It is nice to be in this place after 2 1/2 years.

I do have my ailments and am on medications to help with those. But if I am given the opportunity to recover and heal like I need to then those should dissipate as time goes on. From here on out the posts about my health should be few and far in between.

Thank you to everyone that supported me during this time. All of your prayers and positive thoughts really helped me make it through. I look forward to returning to as much of a normal life that is possible.

Sunrise photo courtesy of Hassan9 via deviantart.com

 

The Short

I am having esophageal reconstruction surgery on November 16, 2011.

This surgery is similar to the one I had in June of 2010 except that it is going to be in Houston with a different surgeon. The reason that I am having this second surgery is that there were a couple of areas that were brought together during the first surgery that never had the tissue and/or blood vessels connect. This is what has been causing the scar tissue to grow all this time. With this new surgery I will also have a plastic surgeon who will concentrate on these connections to try and ensure that this does not happen again.

The Long

The journey leading up to this second surgery has been one filled with tens of procedures, tests, and unfortunately emergency hospital stays. The funny thing is that all the procedures that I have endured for the last year+ were to try and save me from having the surgery that I am about to have. Unfortunately all the procedures that I endured ended up becoming more dangerous then the surgery itself, go figure.

This is the tally of procedures, tests, and hospital stays that I have had since my last post in March:

• Stents: 1
• Dilations: 3
• Laser ablations: 10
• Emergency Room visits: 5
• Tests (CT, swallow, etc): 5
• Days in Hospital: 22 days
• Units of blood transfused: 14-16
• Ambulance rides to emergency room: 1
• Helicopter rides to trauma center: 1

On average I was having a procedure, emergency, or test every 2-3 weeks for the last 6-7 months. That’s one reason why I was not posting here on my site. There was just too much going on in such a small time frame that it was impossible to keep up with it here.

The event that stands out most to me during this period was an emergency hospitalization that happened in early September. It included the helicopter ride, 10-12 units of blood, and hospitalization for 7 days in which 2 were in ICU. It was this event that caused my wife and I to reevaluate everything and decide on having surgery. I will spare everyone the details but I believe this is the closest I have ever come to losing my life. I didn’t see the white light or anything but for all intents and purposes most people don’t live through what I went through in early September.

Surgery Details

My wife and I talked with 3 different surgeons before deciding to go with the one in Houston. She is a specialist in the type of surgery that I need and considered one of the best in the country. Her patients and the staff that she works with speak very highly of her. I have already been under her care for a test and a couple days in the hospital and am convicted that she is the best choice for this important event.

If everything goes as it should in the surgery I should be out of the hospital within 2 weeks. I also should not need any follow up procedures and should be able to sleep lying flat again (Yah!). Acid reflux should no longer be and issue either.

I am really looking forward to getting this surgery done, recovering, and getting on with my new life. I am not sure what that entails but I am looking forward to finding out.

I don’t expect to give blow-by-blow updates of the surgery or my recovery afterward but I will update here and there to let folks know how I’m doing. I will probably update more often on Facebook so if we are friends there you’ll be privy to more info. If we are not Facebook friends yet and we do know each other make a request and I’ll approve it. Here is my page – Dan Masters on Facebook

Kellogg’s has recently released gluten free Rice Krispies. This is great since I haven’t had Rice Krispies since going gluten free.

On the box Kellogg’s states that they use brown rice since brown rice is naturally gluten free. Either way we all know that brown rice is generally better for you then white rice so that makes these Krispies even more attractive.

The best thing about the new box of Rice Krispies is that they include the recipe to make gluten free Rice Krispies treats. That is something else that I haven’t has in a long time. This is another snack I can stuff into my backpack for a quick bite.

It is nice to see more and more companies jumping on the gluten free bandwagon.

It has been nearly 8 months since I have posted on this site. Like many Christians I was going really well for a while proclaiming God’s greatness and faithfulness but when things got tough I stopped.

I guess that is the what the emnemy wanted.

For some reason I got it in my mind that if I was going through difficult times then I must not be in right standing with God. After taking a step back I realize that is not true. In fact the opposite seems to be reality. If you are truly being effective for God then the enemy is not going to leave you alone.

The bible says:

Many are the afflictions of the righteous, But the Lord delivers him out of them all. (Psalm 34:19 NKJV)

The Last 8 Months

I think I have had more affections in the last 8 months then I did in the previous 8 months. That is saying a lot since I battled cancer twice during that time. For me the last 8 months have been filled with tens of medical procedures, ER visits, and hospital stays. In fact as I write this, I have been in the hospital for 3 days after a very scary medical emergency that landed me in the ER, which resulted me being admitted into the hospital.

I won’t go into details because that is not whist this post is about. This post is about God’s faithfulness.

See, even though I have been through so many things in the last 8 months God has delivered me out of each and every one of them. He has done that regardless of how much time I have spent in prayer or read my bible. His faithfulness to me has been consistent regardless of my inconsistency to Him.

Seeing His faithfulness it makes me so grateful to have Him in my life.

Yes, I have been through a lot of trials and tribulation in the last 8 months. But in the same time I have seen God do amazing and wonderful things. I look forward to what the next 8 months have to bring!

Yes, that is right, it has been a year since I had the surgery in which they got “all the known” cancer out. They must have been right because as of today I am still cancer free. That’s pretty cool. There were several points along that way where I wasn’t sure that I would make it this far.

Thank you doctors and God!

I am still going through some procedures in order to clean up some of the side effects of the chemotherapy and radiation but those are nothing compared to actually going through chemotherapy/radiation. I will be done with them soon so I will just concentrate on getting my strength and endurance back.

Thank you to everyone that has sent their prayers and positive thoughts my way. They definitely made a difference over this past year!

As a mother of 3 young children, my sleep and quiet time is priceless.  The other night, I noticed some lights flashing on my home security system.  This was not the first time so I ignored it.  I have never been able to figure out what they are or what they do.  I don’t remember the person that installed the system showing me anything about them.  He did tell me how to arm, disarm the system etc. but I don’t recall him mentioning what these particular lights were.

The following morning I was awoken by this loud, ear bursting sound.  I jumped out of bed (just before 5:00 a.m.) in a panic.  Needless to say, all three kids woke up.  The sound was so loud that we had to go outside.  My 5 year old with sensory issues had both ears covered the whole time.

Soon after going outside, I saw lights being turned on and our neighbors started coming out.  We tried pushing bottoms to make it stop but nothing happened. The lights kept flashing.  The manual was nowhere to be found in the chaos. I could not even think straight.  Neighbors started giving me advice and finally I called up the company and asked them to walk me through troubleshooting the problem.  We finally got the system to shut down.

Today I decided to browse the internet to figure out what the problem could have been. In my search I came across a website for Home Security Systems in Midland, TX.  The first thing I saw was a little remote that looks very similar to a keyless entry for a car.  Apparently ADT Home Security Systems has this awesome little remote control for their systems.

I only wish I had this little gadget a couple of days ago during our fiasco.  I feel like firing my current provider and going with ADT.  I think I could of prevented my neighborhood’s early morning call if I had a more established security company.

My son’s iPad was just delivered and I am “testing it out” to make sure that it is working properly.

The reason my son has an iPad is that he is speech delayed due to autism. He was able to get the iPad for free through some program my wife found. They have developed software that helps kids like my son communicate with the touch interface.

It is so awesome to see something that was intended to play games and edit documents be used to teach someone to talk.

Thank you Apple!

Yesterday was our first trip to the pool this year. The water was a little cold but the kids did not mind it.

Even though all three; ages 7, 5, and 4 do not know how to swim I worked something out. I am able to take all three to the pool on my own and not worry about accidents. They are well trained. My younger son who has ASD will not go in the pool without his floaties. Amazingly the floaties keep them a float.

There is one thing I always do before we leave the house. Putting sun screen lotion before leaving the house is the best thing. If I wait until we are at the pool, my little ones get inpatient.

The floaties are awesome and they have helped out during the summer months. Walgreens has them and they are very affordable. Check them out.

Yep, I am without a stent once again. It was not planned this way but with what my doctor saw in my semi-emergency EGD yesterday he thought it was the best thing.

What he saw was that the area of irritation that was there 2 weeks ago was more irritated. When he biopsied it 2 weeks ago it was cancer free and he still thinks it is. His reasoning for why it is there and getting bigger is that the stents are rubbing in that area.

How This All Came About

To rewind a little bit, this all came about because I called my GI doc on Monday to tell him that food had been getting stuck, and whether this was normal for the new stent that was placed 2 weeks ago? He said no, this was not normal and got me in for a chest x-ray the same day. He wanted to see if the stent had migrated down into my stomach.

The results of the test were negative. No, the stent looked like it was in the same spot.

I told him that when the food was getting stuck it was different then in times past as it seemed deeper, like it was at the bottom end of the stent. He said we should go take a look and scheduled me the next morning for an EGD.

I had the EGD and he saw that the inflammation was indeed larger and that it was almost a complete blockage at the bottom of the stent. I had called yet another time. He took several larger pieces of the inflammation to biopsy. He still does not think it is cancerous but we need to check none the less.

Side Note – Biopsies themselves aren’t nearly as bad as waiting for the results.

At this point he is consulting his mentor who trained him to see what the best course of action is. We will probably put another stent in soon to buffer until a final decision can be made. Unfortunately my esophagus can only go a week or two before it closes enough to where I cannot eat.

That kind of picks up where we left off.

So What Are My Options?

Unfortunately they are few and not well established.

See the problem is that most people who have had the type of cancer that I’ve had with treatment and surgery that I’ve had, don’t live this long. I’m the exception. So I have all these doctors standing around scratching their heads trying to figure out how to fix this so I can live life.

So here are the options that I know of as of today:

1. Put in shorter stents every 4-6 weeks (what we have been doing) And still try to figure out a long term solution
2. Try the new non-invasive surgery that is done like an EGD through my mouth into my throat
3. Do the big surgery that goes through the ribs where they cut the esophagus and put it back together again

I am not too fond of option #1 and everyone, especially me, do not want to do option 3. Number 2 is a pretty new procedure and there is no guarantee it will work. In fact there is no guarantee with any of these that they will work.

In terms of risk #3 is the worst. It is a major surgery and I have already had it once. I would really have to be talked into this one. #1 isn’t really a solution but I am putting myself at risk every 4-6 weeks which really opens me up to having something bad happen. If that bad thing happens then we are talking an emergency helicopter ride and basically surgery #3. Not good. I am not familiar with #2 enough to know the exact risks but I believe they are similar to the risks of a standard EGD. But that risk would be once as opposed to many times like #1.

Wrap Up

So there it is, the last major medical thing that I am facing is demanding that it be resolved. That in itself is not such a bad thing. Better sooner then later I suppose. I just wish the options were a little more attractive.

Oh, and in case you are wondering, yes, I would rather be facing this then anything like what I had to face with cancer. Cancer sucks and I wouldn’t wish it on anyone.

OK. I will stop my whining/rant now knowing that there are a lot of people out there that have it much worse then I do. This is Dan signing off for now. Asta!

The iOS WordPress team just announced that the 2.7 version of their app has just hit the app store. I am actually typing and will publish this post from the app. Already the app feels very solid. I have not had any crashes or login issues that have plagued several of the previous versions. It [...]

I had my latest procedure to swap out stents on Tuesday and everything went great. It was the best procedure so far from both the doctor’s and my prospective. I was eating that night and have literally had no pain.

This new stent is slated to be left in for 4-6 months as opposed to the 6 months of the previous stents. I will get a checkup in 6-8 weeks just to make sure everything is looking alright. If everything does look good we will leave it in for a couple of more months. We are still looking into the non-invasive surgery that may eliminate my need for stents. It would be really nice to have that and be done with all of this. Also, I got the results back from my biopsies and everything looks good which is just more good news.

I am really thankful that everything went so smooth this time around.

Safari Champ, a kid’s indoor play center, has opened up in the location previously occupied by Jungle Java.

Our kids were disappointed when Jungle Java closed but now hopefully they will be happier now that Safari Champ has taken its place. We are planning on taking our kids there today to check it out. I will try to snap some pictures while we are there to share.

Here is a link to their website:

safarichamp.com

I just started a new project today for a company called Austin Turf Grass. They provide sod that you put in your yard and this is all that they do. The are very focused on quality and have been in business since 1984. I have setup a temporary page for them at their new domain [...]

Next Step Capital Partners is a new investment company that operates similar to a VC but instead of taking an equity stake in the company they accept repayment as a percentage of revenue. It is a unique approach to funding and they needed a strong online presence to clearly identify what differentiates them. I worked with several members of [...]

As mentioned before I had my stent in my esophagus replaced last Wednesday. Aa a part of every EGD to replace the stent my GI doctor does biopsies to make sure the cancer has not come back. He also checks my small intestine to see how the villi are doing from me having celiac disease.

In both cases everything looks good – no sign of cancer and my villi have all grown back so their is no sign of celiac disease. That does not mean I can now eat gluten but does mean that my body has healed itself and is absorbing nutrients like it is supposed to now.  This is good because it means that I get more out of the food that I eat then ever before.

Throat Pain

Unfortunately with all that good news I am not feeling all that great. When my GI doc removed the old stent I bled – a lot. Then, when placing the new stent he put it in a little different position (on purpose) and therefore my throat is not used to having something there and so it hurts.

I was OK in the hospital when they had me on morphine for two days but for the last 3 days I have been on vicodin and it is not cutting it. I went to a pain management appointment yesterday morning and they gave me something different that is supposed to be in between vicodin and morphine and should last longer. I took it last night and it does help without making me feel out of it like the morphine and the vicodin do.

I was a little concerned with the amount of pain I have been in the last few days but my wife reminded me that when my first stent was put in that it was a very similar experience. Funny, that was less then 6 months ago but I had forgotten. If this time is similar then it may be a few weeks before all of the pain goes away. I made it through the first time though and will make it through this time as well.

Thanks

Thanks again to everyone for their prayers and good wishes. Your encouragement is greatly appreciated.

I am out of the hospital after having my 4th stent taken out and my 5th stent placed in my throat. The hospital stay was not planned on but I was not feeling that great after the procedure so I decided to play it safe and stay for pain management and observation. I think both my throat and I are getting a little tired of getting tugged on every 6 weeks. The last few days flew by, thanks to God, and morphine. I am on a vicodin regime for a couple days as my throat adjusts to it new plastic friend.

I Really Need a Permanent Solution

My GI doc is starting to think that pulling these things out and putting in a new one every 6 weeks for the next couple of years probably isn’t the best plan. The problem is that nobody knows a better plan at the moment. My GI doc is starting to talk about reaching out across the country to find a better and permanent solution. If anyone that they can refer me to I would appreciate it.

A Recap of My Diagnosis

I have a Benign Esophageal Stricture as a result of having an Ivor Lewis Esophagectomy. The surgery was in June 2010 in response to reoccurring esophageal cancer that showed up after chemo and radiation. The result of the surgery was that approximately 1/2 of my stomach and 1/2 of my esophagus where removed. According to the surgeon all of the known cancer was removed from my body and I have been cancer free as of the time that I am writing this.

Since the surgery I have had 4 dilations and have had 5 stents placed in my esophagus. I have only been without a stent since the surgery for about 10 weeks – 6 weeks right after the surgery and 4 weeks between the 3rd and 4th stent. The two times I have been without the stent the first time it completely closed off and the second time it was down to 5 millimeters. The stent that I currently have placed is 18mm and I am scheduled to have it replaced in another 6 weeks.

My throat does not like the stent as the last 2 times I had the stents removed the muscle started growing over the stent. This has caused it to be more difficult to remove and cause more damage to my throat each time. Due to the difficulty in removing the stent it is more painful each time and has increased my recovery time from the procedure.

Possible Solutions

The only real solution that has been discussed at this time has been another surgery. The issue with this is that surgery is what caused this in he first place. Also, I don’t really have that much esophagus and/or stomach to spare so it would be kind of a big deal like the first surgery was.

Is a pemenant stent possible? Can we have a minor surgery that only gets rid of the scare tissue? These and many more questions are the ones that I hope to answer in the near future.

Again, if you know anyone who has gone through something like this before or happens to be a kick-ass Cardiothoracic surgeon please shoot me their info.

While searching through the most popular podcasts on iTunes the other day I stumbled upon the Stuff You Should Know podcast. Right off the bat I found a segment on Should You Eat a Gluten Free Diet. It was a good 1/2 segment on what celiac disease is, where it came from, and how to treat it. Other interesting podcasts are How Does the Mafia Work and how does immigration work.

If that wasn’t enough they actually have an iPhone app that not only has these podcasts but videos and articles as well. I have found a new, educational, time waster. The app is awesome and can be downloaded here – How Stuff Works iPhone App

Business Bank of Texas (BBoT) is bank focused on providing banking services for businesses in Central Texas. In 2010 BBoT wanted to expand its online presence in order to generate new business. I worked with the marketing firm Good Goliath as an Internet Strategist to formulate a website redesign along with a social media marketing [...]

I had just gotten out of a meeting and wanted to enjoy the Dark Chocolate Reese’s Butter Cups I left in the car. Unfortunately they where starting to melt and things in cars tend to do.

At home I had placed my Reese’s in the freezer in order to get them back to a solid state but what could I do in the car I thought.

Air conditioning!

At first I held the cup in front of the A/C vent and it was working but my fingers started to freeze as well. Then the defroster came to mind. I carefully balanced the cups between the sides of the defroster vent and turned it on full blast.

A few minutes later I had unmelted Peanut Butter Cups.

Note: You need to park in the shade while trying this endeavor.

As most of you know I finished chemo up 3 weeks ago this week. I met with my GI doc a week after that last dose and he now does not consider me a cancer patient any more.

That is great news!

Although I am no longer considered a cancer patient, I am now considered a stricture patient. The stricture I have was caused by scare tissue in my esophagus from the surgery that I had back in June which removed all the cancer. Since the surgery I have had several dilations and 2 stents due to this stricture.

The last stent was taken out 4 weeks ago and I have started to have trouble swallowing again. It started on Thanksgiving and has been consistent since then. I had a barium swallow yesterday and it confirmed that there is a narrowing of my esophagus where the surgery was at. No cancer, nothing like that, just scare tissue.

I am having another stent placed on Thursday

So I am no longer battling cancer but being inconvenienced by 1 cm of scare tissue. Yes, just 1 measly centimeter of tissue. It may not sound like much but it does make a difference. The standard esophagus is anywhere from 18 to 25mm and mine is about at 6-7mm at the stricture point right now. What that means is that I am basically on a liquid/mushy food diet right now.

The Real Issue

The real issue here is that putting stents in and taking them out every 6-8 weeks is not a viable long term solution. What we are doing is buying some time, and space, that will allow us to do some research and let me eat normally – for now.

What we really need is a long-term solution.

The issue is that there is no textbook answer for what to do in this situation. Dilations work for some people – they do not work for me. Stents work for some – not me. Another surgery has not been ruled out but my wife, GI doctor, and I really want to go down that road if it can be avoided.

So we are doing research.

We are trying to see what other solutions their might be out their for a tough-throated person like me. We are only one day into looking into it so we do not have any viable solutions at this time. The internet is wealth of information though so I am sure something will pop up sometime soon. W also have our awesome GI doctor as well looking into solutions.

Still Thankful

Despite not quite being done with the after affects of dealing with cancer I am still thankful for where I am at. This issue is not life-threating but it is inconvenient. I can deal with inconvenience. Really, I can.

I believe that we will find a solution and that this will no longer be an issue. It is just going to take some time like everything else in life.

Thanks again to everyone for their support while we work this out.