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.

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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!

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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.

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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.

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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.

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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.

Ciliac Disease

• Yep, I have silent Ciliac (not latent like I thought)
• Should I go on a Gluten Free Diet? Yes, it would be a good idea.
• He said it is a good idea because you generally do not want parts of your body to be irritated on a regular basis the way that my upper bowl is.
• Could I not go a Gluten Free diet? Yes, but there are the risks associated with that. He too said that while cancer in the bowl is a risk that he has never seen it before.
• I asked him about how strict you have to be – in another words if I accidentally have something with Gluten is it going to set me back to square one – He said no – the gluten irritation would be in proportion to the amount of gluten I have – it is not an all or nothing thing. If I wanted to have something with Gluten here and there that would be OK.
• He said that he would like to see me go on the Gluten free diet to so we can see what a healthy upper bowl looks like at my next EDG.

Another EDG

• He thought having one in August was a good idea and every 6 months from there in out
• I asked if he thought we should have on sooner. He said no. There are no symptoms or any reason to warrant that.

My Take

I like the doctor. Honestly I am not sure if he told me anything different but he did communicate it differently. He said that he could NOT put me in a box and say “this” happened because of “that”. I really liked that because I felt my previous doctor was putting me in that box. He did not have answers for me which in a weird way comforted me. To me that means that he is really looking at all my stuff and seeing that it really does not add up like it does for most people.

I told him about my dry throat and what the ENT doctor said – treatment related. He said that when a person has cancer and then treatment that the natural DR response to anything after the treatment is that it is “Cancer or Treatment” related. He said that he couldn’t do that in my case because everything else was so weird in my case (cancer at my age, no GERD, my recovery, etc). He said my case is so unique that we just have to see what works for me and what doesn’t.

I feel better about going Gluten free after talking with him. I am interested now about seeing how things look at the next EDG in August. Starting now I will stay away from bread products and when I get the chance I will try to look at so books about Gluten free. For whatever reason it does not seem as hard now as before. I think that may be in part because you do not have to be so strict. If you happen to have some Gluten then it is not the end of the world.

I will take the acid reflux medication I have now everyday.

From here I think I just need to do what I know is right – take my medication, eat at regular times, try the best I can to Gluten free, and don’t get stressed out. In August I will get the EDG and the PET and see where we are at. My prayer and expectation is that things look even better then compared to my last tests. If anything comes up between now I will go to the doctor if it is necessary.

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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?

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So what does this mean for me?

This means that I am done with treatment for cancer. Yeah!

It also means that I do not have the weekly doctor’s appointments that I had before. In fact I do not have an appointment with my oncologist until April. He doesn’t want to see me anymore which is cool. I am assuming the April appointment will be to discuss my follow up plan. I know getting a PET/CT scan and EDG every 3-6 months is pretty standard for the first year so I am sure he will recommend something like that.

Other then that I am doctor free from here on out. Groovy.

What about work?

Good question.

I feel better but I feel like I need to have a couple of months where I do feel well before making a commitment to show up to work everyday. I want to make sure that I am done with the doctors completely and that I have the stamina to show up every day.

The other issue that affects work is health insurance. Currently there may be an issue with returning to work and the health insurance from a company not covering my cancer follow up. The reason for this would be that it is now considered a pre existing condition. I really cannot go without my follow up being covered so we are looking into that.

So how do you feel?

I feel great. 

I am eating well (maybe a little too well now), sleeping well, and have pretty normal energy. As far as I can tell I am back to normal if not a little better. It is hard to believe that it was just 5 months ago that I was diagnosed.

It has been a journey and I am really happy to be at the end of it. I am happy to say that cancer is not the death sentence that I thought it was 5 months ago. Cancer is treatable and you can return to normal life. It may be scary along the way, but you can make it through.

I am so thankful to be sitting here writing that.

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I went to the doctor yesterday and weighed in at 154lbs. I weighed 144lbs about a month ago. My ideal weight is supposed to be in the 150-160 range.

This means that I need to enter the “Maintain Mode” as opposed to the “Gain Mode”. I guess that means no more chocolate doughnuts and possibly a little exercise. Oh the horror!

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It all started when I went to the doctor to have my blood drawn to check my hemoglobins for my anemia. After they drew my blood they had me wait for the results. The results came back at 11.7 which was up from 10.3. At first I was actually disappointed with the results until I realized that I have more energy at 11.7 then I have had in years. Also, I remember during one of my stays in the hospital that my level got above 12 but I did not have this kid of energy. I can only imagine how I will feel when my level is up to 16 where it should be.

What this tells me is that there are some things that are no longer going on in my body. Those things are the side effects from chemo, radiation, and namely cancer. I have turned the corner on all of these things. It has been a long time in coming .

The other thing that gave me an ah-ha moment is when I was leaving. I checked with the scheduler as to if I had an appointment to go over the scope that I am having next week. The scheduler said no and the nurse that was standing there said no, you will get the results the day of the procedure from that doctor, the oncologist does not need to meet with me.

I then asked the scheduler if I had any appointments in regard to the cancer at all. She told me that I just have a standard follow up appointment in April. That’s it, a follow up appointment. Not a “test this” appointment, or results appointment, or a treatment appointment. It’s a “how are you doing” appointment. Awesome.

The reason that these two things are so significant to me is that I am so used to going to appointments, taking treatment, taking tests, and waiting for results. Now that I don’t have to do all that stuff it means one thing -

I am done with cancer!

I am just in shock. It is not that I never thought this day would come but I guess I just really didn’t think about it. Now all of a sudden Boom! It’s there. It is so crazy. Literally I don’t know what to do with myself.

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