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 very happy to be all done and am actually feeling pretty well, actually I feel the best I ever have after a dose.

From here I have a couple of follow up appointments for the side effects from this last dose and then I have a CAT scan in about 3 weeks. After that I won’t have a CAT scan for another 6 months and I don’t see my oncologist until then as well. Basically they don’t want to see me any more, which I don’t mind .

I really am looking to get my energy back and trying to get back to work to keep myself busy.

Thank you for everyone’s prayers and support during this time. I could not have done it without you!

The hope is that my throat will remain open to where I won’t need any more dilations or another stent. We will just have to monitor it and see how things work out. I am expecting that everything will be just fine .

The reason for this is that the cumulative effects of the last 4 doses of chemo are really beginning to take their toll on me. Tomorrow will be 3 weeks since my last dose yet I feel like I am at the 3-4th day since my last dose. I am nauseated more then I have ever been and I have neuropathy (numbness and sensitivity to cold) in my body, especially in my figer tips to where I freezing cold most of the time. Last night I had to sit on my hands for almost 45 minutes to get them to warm up.

The neuropathy is of concern because I am told that once it shows up that it does not go away for a long while.

There was already talk of reducing my dose of chemo that I was supposed to get tomorrow but after the week that I have had I cannot imagine taking another dose and making myself feel worse. My hope is that I can take the next 3 weeks off from chemo, get back on my feet, and then finish up my last two doses from there if appropriate. I don’t want to drag it out any longer but I really need to give my body a chance to catch up.

I would appreciate everyone’s happy thoughts and prayers over the next couple of weeks so my body can recover to the point that I can get this finished up.

The other good news is that this is the first week that I GAINED weight instead of loosing it since I started chemo. I only gained 2 1/2lbs but I’ll take what I can get, I’m too skinny now!

Thank you for everyone’s prayers. I can feel them and they do make a difference .

I had the stent put in 4 weeks ago today which was exactly one day after my first dose of chemo – which was not a good idea. Unfortunately the stent did not initially go where they wanted it to and I spent a couple of days in the hospital on a heavy dose of morphine and anti nausea medication. Eventually the stent did work it’s way to the right place and I was sent home.

At home I had to deal with the side effects of the chemo and the stent. With the chemo it was a lot of nausea and fatigue. With the stent it was the sensation of something always being stuck in your throat and the gag reflexes that come with that. By the time I started to get over the side effects of both of those it was time to have another dose of chemo. Bah!

I had my second dose of chemo a week ago today. It was not as bad as the first dose but there was still some nausea, lack of appetite, and fatigue. As of this past weekend I started to feel better and yesterday and today have actually been quite good. I have a little bit of a metal taste in my mouth from time to time but the nausea is gone and so is the fatigue. I am starting to get my appetite back as well which is nice. Chipotle never tasted so good.

Going Forward

From here I still have 4 doses of chemo. My expectation is that I should be able to manage the side effects a little better then these two past times so it should not be as bad. I may get a little more fatigued overall but I am felling pretty good right now so I am not to concerned about that. I am also having my current stent taken out and having another put in. This is scheduled to happen next week.

I am honestly not looking forward to this because of what happened last time. It should go much better though because my esophagus is at 18mm now and it being narrow was the major reason I had issues last time. I will be happy if I don’t need to stay in the hospital .

The plan is that we will leave this new stent in for another 5-6 weeks and then take it out. We will not put another one in. The hope is that my esophagus will have stay open on it’s own. If anything I might just need to have it dilated a time or two in the months afterward.

What About Cancer?

Well, all signs point to there still not being any. My narrow esophagus was a result of the surgery that I had, not cancer, so it looks like we are still in good shape. My Oncologist scheduled a CAT scan a day or two after my next dose of chemo just to make sure. This is not standard but with as quick as it came back last time we are just going to make sure things look good. Also, last time I was in there all the side effects were hitting me pretty hard and I was pretty down. I think he wants me to see the test results to keep me going. I am better now but I could always use more good news.

Conclusion

Overall I am doing great. It has almost been a year since I was diagnosed and I am actually in better shape today then back then. A year ago a could not go up the stairs in my house without getting winded and feeling like I was going to pass out. Yesterday I did 5 flights of stairs with ease. That right there makes me feel great.

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.

Another trip to the ER

This time they did find something stuck and removed it. They also saw that the diameter of my esophagus was even smaller. It was now about the diameter of a pen or pencil. I was placed on clear liquids only and sent home. I stuck to the restriction of clear liquids but by Monday the following week getting water down was again an issue.

That same day I had a visit to discuss the plan to get me back to normal with my GI doctor. He had scheduled me for another EGD the following day (today as a matter of fact) to do another dilation. Unfortunately he didn’t (and couldn’t) have much of a plan because he needed to see how my esophagus. We discussed more dilations, maybe a stent, and maybe another surgery. We would just have to see.

The EGD Results

The result of today’s EGD is that my esophagus was 4mm in diameter and he dilated me to 8mm. A normal person’s esophagus is 18mm so mine with the dilation is less then half of most people. I am on liquids only which is fine with me since I could not get anything down before today.

With what my doctor has seen with today’s procedure he has decided that a stent is the best course of action. The reason for this is that my esophagus is just not responding well to dilation and so doing several more of those isn’t going to help. They have already contacted the stent company and are hoping to have it placed within the next week.

The stent is not a permanent solution as it comes with it’s own set of restrictions. It will however allow me to eat and prevent things from getting stuck. I see a lot of soups in my future .

My Take

While this has been a rough 2 weeks I am glad that we are making progress. I should have this portion of the journey behind me in time for my start of chemo in week. Wish me luck in that journey.

Thanks again to everyone’s help, support, and prayers during this time. It helps more then you know.

Clarification

After reading through all of this I just wanted to clarify that the reason for the narrowing of my esophagus is a direct result of the surgery that I had and not because there is cancer there.

I was a little concerned about this but my GI doc takes biopsies each time he is down there and they each come back negative. So we are not fighting cancer here, we are just experiencing some unfortunate side effects from the surgery that I had. The expectation of everyone is that over time my esophagus will return to a normal diameter and that this will no longer be a issue. I just have to been patient until then.

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.

To tackle the unknown we have agreed to do some more chemo starting near the end of July.

When the doc presented the option of chemo that is exactly what it was – an option. I could have opted to do nothing and that would have been acceptable but as I put it to the doc – I am not rolling the dice anymore. I want to do everything possible to make sure that this cancer is completely gone from my body.

It is weird, when I first had cancer I was terrified of chemo, radiation, and surgery and their side effects. Today I am thankful for the surgery I just had am looking forward to chemo. The side effects suck but they are temporary. I am happy that I can have treatment and beat this thing.

So the next few weeks will be for me to recover as much as possible from the surgery. I am confident that I will be able to go through this round of chemo as good if not better then the previous round.

Everyone’s thoughts and prayers are welcome through this leg of the journey!

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.

My recovery went pretty well in the hospital other then having a little air trapped above the outside on my right lung. They monitored it for several days and then figured it wasn’t a big deal. I think the hardest part about recovering in the hospital was the lack of sleep. It is amazing that they expect you to get better when they are waking you up every couple of hours.

I am glad to be at home now to complete my recovery. I am having some pain in the area where they went in near my ribs. I have been able to get a handle on the pain with a heat pad and taking the right dosage of pain medication. When I was in the hospital they were giving me 10ml’s of Vicodin. When I got home I assumed that it was the same. Only after talking to my mom about my pain did I read the label and discover that I was supposed to be taking 15ml’s. Those other 5ml’s make a big difference. So for the most part I have a handle on the pain.

I am pretty swollen in the rib area though. If it does not go down by Monday then I will go in to the doctor to see if there is anything that should be done. I would rather play it safe then have something that could have been easily treated turn into something big.

I want to say thank you to everyone who came and visited me and reached out to me while I was in the hospital. It is always nice to see a friendly face or hear a familiar voice.

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.

My Outlook

I am good spirits but in a little bit of shock. I have a very vivid imagination so sitting in the surgeons office and having him explain what he was going to do to me was a little traumatic. I think I may have gone to my “happy place” a couple of times because I only remember bits and fragments of what the surgeon said.

I did ask him how this was going to compare to me going through chemo and radiation and he said this is nothing like that – it is much easier. That helped me a lot since I know what that felt like. If I could go through that I can go through anything.

Prayer for My Wife

While I am on the subject of surgery I would appreciate your thoughts and prayers for my wife as well. She has been doing great with everything that has been going on with me but is going to be having surgery herself as well. Her surgery is on her eye and it is the day after my surgery. I think she will only be out of commission the day of surgery and maybe part of the next day. It is kind of a lot in a small time frame for both of us but I am confident we will both make it through just fine.

Finally, Thanks

I just want to give a great big thanks to everyone that has reached out to us to help with this latest round of treatment. You all are making a big difference in this going smoothly for our whole family. I look forward to being able to repay you generosity some day in the future.