Swallowing, ER Visits, and a Plan
So this past Monday was 6 weeks since I had my esophagectomy. The first 4 weeks went exceptionally well. The 5th and 6th week – not so good. In the end of the 4th week I was eating half of a burrito bowl at Chipotle in one sitting. For the last 2 weeks I can get water down my throat if I am lucky.
The Pill
This turn of events from eating to not eating all started with a pill. I had been doing so well eating that I got cleared to take pain medication via a pill as opposed to liquid. I decided to start small and try a Tylenol gel cap. As soon as it cleared to back of my throat I felt it stick.
I waited out the night but it still felt like it was stuck so I went to the ER. They did an emergency EGD on me and while the pill was no longer there the are of the surgery was extremely irritated. I was sent home and told to do liquids for 48hrs which I did. On the third day I was back at Chipotle. By the second bite I felt like something might be stuck again. As the day went on the sensation went away but things were slow in going down. The next day it was worse. The day after that I could not get water down my throat. … Continue Reading
What My Cancer Doc Said
So I had my first appointment with my cancer doc today since before my surgery. He went over the pathology report which said that they had gotten all the know cancer out of my body – yah!
He also told me that he was a little concerned with me going into surgery because of one of my lymph nodes that the cancer had spread to. The reason for his concern was due to it’s location – it would be hard to get to. Fortunately he had recommended a great surgeon who did a great job of getting it out.
He had another concern though.
His current concern was that the cancer that I had came back in the same area after being radiated and shot with chemo. That area is now gone but what that means is that this is/was a pretty aggressive cancer. I say is/was because they have taken all known cancer out of my body but the concern is the unknown. … Continue Reading
Out of the Hospital from Surgery
Warning – I am writing this post under the influence of a healthy dose of Vicodin. Please excuse anything that may not make sense in this post 
.
On Wednesday this past week I was released from the hospital. That is 10 days after the Ivor Lewis Esophagectomy Surgery I had.
What is that you may ask?
That is a pretty major surgery where they remove half of your esophagus and half of your stomach and put then back together again. I was in surgery for 5 hours and they made 2 incisions – one down my belly – the other between my ribs on the right side. I was in ICU for the first day (this is standard because of the length of the surgery), on the cardiovascular floor for a day (because of a heightened heart rate), and the rest of the time I was on the pulmonary floor (due to my chest tubes). I am happy to say that I do not remember the first 2-3 days after the surgery. … Continue Reading
A Date for Surgery
So I got my date for surgery yesterday – Monday June 7th. Yes, that is this Monday. This was a little sooner then I anticipated but at least I will get it done and out of the way.
The Good News
The good news about it is that I will only be in the hospital for a week as opposed to the 2 weeks I thought I was going to be. When I leave the hospital I will be eating again, walking, showering etc. It should be about a week after that when I should be able to return to semi-normal life.
The Not So Good News
The not so good news is that because they are making in incision in my side that I am going to be sore for several weeks after the surgery and the range of motion in my arms is going to be limited. Due to this I will not be able to drive for about 3 weeks after I get out of the hospital. I can go places, I just can’t drive. … Continue Reading
Unfortunately I Still Have Cancer
Yeah, I still have cancer.
Although I had a clean EDG and PET scan back in January I had new tests last week and they came back positive in the same place in my esophagus as as before. That means that the cancer was not gone in February , it was just hiding.
The Good News
The good news is that the cancer has not spread and that I am still a candidate for surgery which I am going to do. I have my consultation with the surgeon on Wednesday of next week and am hoping that I will have the surgery a week or two after that. From my research he is one of the best surgeons in the area for what I need so I will be in good hands.
If I remember correctly I should be in the hospital for two weeks recovering. I am figuring it will be 2-4 weeks after that when I should be able to return to normal life. We will just have to see. The other good news is that my cancer doc says that if the surgery goes the way that it is supposed to then I should not need any further treatment which is great. The other bennefit of the surgery will be that I will have a smaller stomach and thus will be a lite eater from here on out. That means that I should enjoy my 150lbs 30 inch waist for the rest of my life .
To be honest this is not the direction that I wanted to go down but when you have a major surgery in one hand and not living much longer in the other surgery is very attractive. I would appreciate your prayer during this time for our family that the surgery goes well.
Bing’s Top 100 Songs by Year iPhone App
I just stumbled upon a fairly new app by Microsoft under their Bing label.
What you do is select the year that you want to listen to and the app serves up the top 100 songs according to Billboard that year. It plays them in a Pandora type shuffle to where you can only skip to the next song. You can click a button and see all the songs from that year but you cannot select a specific song to play.
The other downside to the app is that it puts up an ad for the main Bing iPhone app every 3 or so songs where you have to manually click next to continue with the music. I downloaded the app that they were advertising but the ads still come up.
They are advertising that this app is going to be $1.99 but is free right now. I would hope that they would remove the ads in you actually pay for the app. I guess we will just need to see.
Currently I am groovin’ like it’s 1993. Hip Hop Hooray! Ho. Hay. Ho.
Here’s a link to the app in the iTunes App Store – Top 100s by Year by Bing
More Changes – Ciliac Disease and a Gluten Free Diet
As mentioned in my post on Friday it has been confirmed that I have celiac disease. The weird part about celiac disease is that it is more of an allergy then anything else. I guess they may call it a disease because there is no cure for it. There is a treatment though and that is a gluten free diet.
When I was at my appointment with my GI doctor on Friday I asked him if my esophageal cancer could have been related to my celiac disease. At the time he said no. But, later that afternoon he called me to say that he could be wrong. After I had left my appointment he was so perplexed about my case that he started doing research. In his research he found a study in Europe that did link Celiac disease to possible esophageal cancer.
Needless to say that motivated me to look into this gluten free diet a little more.
My First Day as Gluten Free
My first day of my gluten free world was the next day – Saturday. It started out terrible. … Continue Reading
My Visit with My New GI Doctor
I just got done with my visit with my new GI doctor. I felt that the visit went really well.
This is what he said about:
Cancer Stuff
- He is perplexed how someone my age could get the cancer that I got. At first he thought I was 43 and was blown away even more when I said I was 34.
- He really doesn’t know if it was GERD that caused it or not.
- He said cancer can spring up anywhere anytime in anyone.
- It is normal to assume that GERD is a precureser to cancer but maybe not in my case.
- He thought it was a bold move not to do surgery.
- Her agreed that surgery was major and that I would permanent side effects from it.
- Other then the two points above about surgery we didn’t talk too much about it.
GERD Medication
- He thought it was really weird that I had the side effects from Prilosec and the other medications in that class.
- I asked if I should be taking the current medication I am taking and he said sure but he does not know if it will help.
- He is not even sure that I need to take anything but try it and we will see the results
- I told him about what DR Godel said about the current medication and my body getting used to it where it would be ineffective. He said that does happen some times but we would have to see in my case.
… Continue Reading
Post Cancer Treatment of Other Stuff
Now that the cancer thing is pretty much over and done with I get to visit other doctors about various other items.
One doctor I am waiting to see is a hearing doctor since I now have constant ringing in my ears. From what I have been told this is probably a side effect of the chemo drug Cisplatin 
. The good part about this is that during the day I don’t really hear it. It is only when things are quiet (which isn’t all that often). I don’t want to go deaf though so I am having it checked out.
The other doctor that I am visiting is the GI doctor. This is the guy that goes down your throat and up your backside to make sure things look good. I am glad I haven’t had the latter test yet . The reason I am seeing him is that is where the cancer was so we need to keep an eye on it.
One thing this doctor says I have is acid reflux and that is what probably caused the cancer. Fair enough, that makes sense other then the fact that I am no symptoms of acid reflux. No heart burn, no upset stomach, etc. Nothing. The only time I have any of these symptoms is when I take the medicine that he gave me for acid reflux – then I feel like I have it.
The other item that he says I have is ciliac disease. This is because although I did not have a positive biopsy for ciliac (it wasn’t positive but abnormal) my blood test shows elevated antibodies, etc, etc. The common side effects of ciliac disease are weight loss, malnutrition, anemia, etc to which I have none of these symptoms. The doctor says that I should go on a Gluten free diet which I am told is a pain in the arse.
If that wasn’t bad enough I am getting conflicting information from this doctor about the ciliac disease. He said my biopsy was not positive but the blood test was and this means Gluten free. But he handed me a packet about ciliac disease and it outlines a variation called latent ciliac disease. In latent ciliac disease the blood test is positive but biopsy is negative. The treatment for this – do NOT do a gluten free diet. Weird.
The good news is that our insurance changed and this doctor does not take the new insurance. That means I will go see a new doctor and see what he has to say. In the mean time I will be eating as much gluten as possible since I may never be able to eat it again.
Anyone know where I can get a couple gallons of gluten?
From My Other Sites
- Hot Wheels RC iNitro Speeders
- Gluten Free Teriyaki Sauce
- OnLive Desktop iPad App Puts Windows 7 in Your Hands Via the Cloud
- Air Hogs Heli Cage Hands On Review
- Hopefully the First and Last Health Update of 2012
- Health Update – The Short and the Long of It
- New! Gluten Free Rice Krispies
- God’s Continued Faithfulness
- One Year of Being Free of Cancer
- Home Security System Fiasco