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Health Update – The Short and the Long of It

November 9th, 2011 Comments off

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

One Year of Being Free of Cancer

June 1st, 2011 Comments off

20110601-115559.jpgYes, 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!

The “Long Term” Stent Ended Up Being the Shortest of Them All

March 23rd, 2011 Comments off

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!

5th Stent Out and the 6th “Long Term” Stent is In

March 11th, 2011 Comments off

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.

Clean Tests, But A Lot of Pain

February 1st, 2011 Comments off

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.

4th Stent Out, 5th Stent In

January 28th, 2011 Comments off

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.