I Am Borg: Designate 1 of 4

Bonus points to anyone that gets that reference and the Overlord reference. Yesterday the PEG tube, aka G tube, was installed. It was interesting because the anesthesia they give you causes amnesia of the procedure. So I was partially awake during the procedure but remember nothing about it. According to Sue when I came out of it we spoke to the nutritionist and the doctor. Then about 10 minutes later I asked when we were going to speak to the nutritionist and the doctor. Of course I have no recollection of any of this.

Before the feeding tube was installed the GI specialist really didn't give us any information about using it. Fortunately the nurse at the radiation oncologist went out of her way to provide me with info on how it works, who provides supplies etc. She even started to set us up with a company that provides supplies. So wouldn't you know it after the procedure it turns out they had us set up with a nutritionist, supply company and visiting nurse. I appreciated all of the information but it would have been nice to know it in advance. This is a common complaint among cancer patients, not getting enough information.

We had to wait 24 hours before using the tube. The visiting nurse came out this afternoon to get us started using the tube. The worse part of this was they put a large dressing over the area and I don't think they could have covered more chest hair if they had tried. Big time ouch when they took it off! Currently I have it taped in place but on Monday the belt / pouch setup should arrive. The setup looks like this.

(Note: That isn't me in the picture. :-))

Overall using the feeding tube is pretty easy. The home supply company provides the cans of feedings and the syringe to administer them. Basically the syringe is just like a turkey baster. It fits into one end of the tube and you use gravity to feed from it. The plan the nutritionist has is to gradually increase the volume that I can take at one time. Right now my stomach has shrunken a bit so it can't handle a whole can at once. Today we started with halk cans. The goal is to work up to a whole can after one day and then 2 cans per feeding (16 ounces) on day 3. The daily goal will be 8 cans per day or approximately 2400 calories.

One other plus of the feeding tube is the ability to take medication through it. For example the antibiotic they gave me for the few days after the procedure is in a rather large capsule. With the sore throat its a bit hard to swallow. I actually threw one up when the visiting nurse was here. No problem now. I just open the capsule and mix it with a little water and pour it into the syringe. That definitely will simplify things as my throat gets worse.

On the tumor news so far so good. The radiation oncologist used a scope to look up at one side of the nasopharyngeal region and it appears that along with the tumors on the side of my neck it is shrinking as well. Right now I am 33% of the way complete with radiation treatements and so far we are making progress. It will be interesting to see where things are at when they do another CT Scan at the half way point. As I mentioned in a previous post radiation is the main weapon against the tumors. The chemo helps increase the effectiveness of the radiation and gets any stray cancer cells that may be floating around but the radiation is the big gun against the tumors.

A New Blog Feature

I have added a list of foods that I plan to eat after I recover from the radiation. My sense of smell is intact though swallowing and taste are not. Whenever I smell something I really want to have but can't will add it to the list. It will be a busy few weeks once I am done. :-)

Road Trip To Rosswell

Yesterday we went up to the Rosswell Park Cancer Institute to get a second opinion on the diagnosis and the treatment plan. It may seem like closing the barn door after the horse has left seeing as I had already started treatments but we still felt like we should have confirmation on the plan.

The trip up was pretty quick. It took about 2 and a half hours. We were able to park at the garage right in front of the main building. We went in to register and saw at the information booth they would validate parking for patients so you get a discount. We didn't have the parking ticket with us but the stamped a slip of paper for us to use. We could see right then that they had a more easy going approach. Parking for patients for the day was only $3.

When you check in they give you a pager so you don't have to wait in line for admissions. They page you when it is your turn. We only waited about 5 minutes and then we were called. After going through admissions we had plenty of time so we went up to the cafeteria. They had a very nice setup and it was reasonably priced.

We were still a few minutes before our 1:30 check in at the head neck and throat area so we waited in the lobby. They had mission still furniture to sit in and someone playing a grand piano in the main entrance way. Definitely a different sort of place.

At 1:30 we checked in for our appointment. The waiting room was a bit small and was also shared by the dental center. At that point we wondered what the appointment at 2:00 would be like. We were called back early and when we went through the doors you could see that the waiting room wasn't an example of what the facility was like. It was a large hall was with one long counter type setup on one wall and several treatment rooms on the other. We ended up starting at 1:20 with a nurse that did the normal check the vital, medicines and such. While we were with her we asked about options with the PEG tube. One thing they do is tape it up but that will get rather painful constantly taking the tape off my stomach. She asked another nurse about it and she had heard about a type of belt / pouch setup. To make a long story short during the 2 plus hours we were there the nurses searched for and found the information on the pouch for us to take back home. They also showed me a sample of the PEG tube.

At around 2:00 we were shown into an examination room and met with the nurse practitioner. At first I was thinking wait a second we drove all this way and we are not meeting with a doctor? Not too worry. First she had worked at Rosswell for 8 years in a different department and was there to do some more detailed preliminary exams on the cancer. She had also looked at the various test results while the nurse was examining us. I asked how many cases of nasopharyngeal cancer they say up there and it turns out to be a few a week. After she completed her exam the main doctor came in. He used a scope to check out the sinus area. He also spent as much time as we needed discussing the cancer, our treatment plan, what happens after the treatments are over. At no point did we feel rushes or hurried. We even chatted about youth hockey. I mentioned the concern about dry mouth and he went out and found the doctor that specializes in that and had him come in and meet with us. I was amazed. He also had all the time we needed. After that he had a question on the chemo so he rounded up their medical oncologist to meet with us. That was also very useful.

All in we were there for about 2 and a half hours. At no point were we waiting more than a few minutes in between meeting with everyone. They all had time for all of our questions and were able to offer lots of advice on how to deal with some of the symptoms and also some good advice on things to during radiation. For example both the head doctor and the specialist in dry mouth and swallowing suggested that I try to have at least one sip of water every 5-10 minutes while awake no matter how much it hurts. This keeps the area in the throat from sticking together. Even if I am no eating I need to be swallowing. They also had some other great advice as well.

Overall the treatment plan I am on is the correct one. The people that we are working with are great but at times it feels like a disjointed approach. Meeting with the people at the cancer center was very useful not only to validate the treatment plan but also to get a handle on having an integrated approach. I would recommend that anyone who is diagnosed with cancer also get a second opinion from one of the major cancer centers if you can. The medical oncologist at Rosswell put it best. He said that they treat the patient, not just the diagnosis. It truly felt that way. We never felt rushed at all and they volunteered a lot of information that we didn't even thing to ask for. Everyone there said that if we have any questions we could call up there. Also I have a follow up appointment in February once the chemo is done. This put to rest one of my concerns about what happens after treatments are complete.

2 Weeks down and hunting for medicine

Today was radiation treatment number 10. Two weeks down and five to go. I know that there will be more chemo after the radiation but I am viewing completion of the radiation treatment as a major milestone. The radiation is the aerial bombardment that has the greatest impact on the tumors. Already they have shrunken quite a bit. This Friday the radiation oncologist will use a scope to check out the main tumor in the nasal area. (Trust me when I tell you this is not as fun that it sounds.) Its good to know that progress is being made as the fight continues.

As far as how I am doing these two days have been pretty good. I am farther away from my last chemo treatment and that helps. I also scheduled the treatments for later in the afternoon so my overall day is more productive. Outside of a killer sore throat I am doing good right now.

This week we have a few extra things on tap. Tomorrow Sue and I head up to the Roswell Cancer institute in Buffalo to get a second opinion on the treatment plan. I don't really see any problems with the treatment plan but it is good to get a second opinion. Also they see more of this type of cancer there so we may be able to get some more information on strategies to minimize some of the side effects. One area of concern is the salivary glands. It turns out my fever on Friday was most likely caused by a reaction to the medicine they use to protect the salivary glands. That means I won't be able to get that. I spoke to the radiation oncologist about that today and the plan is to leave one gland out of the target area. Also in two weeks they will scan me again and readjust the treatment plan for the final two weeks. This is good because it will help reduce some of the collateral damage.

Also on Thursday I get the dreaded PEG tube installed. I can definitely see how I will need this in the upcoming weeks but I am not looking forward to getting it put in. I have been told that they will use conscious sedation to install it. In essence I will be awake though afterwards I won't remember it. I was wondering if it would be appropriate to bring a 50 dollar bill with me to tip the anesthesiologist to put me under the whole way. :-)

The last thing to report is the hunt for pain medication. I have started to have a soar throat and it is difficult to swallow. It turns out that aside from the effects of radiation I also have a throat infection called Thrush. I was at the medical oncologist office yesterday and they prescribed something called "Miracle Mouthwash" Yep, that is the real name. This is good old fashioned medicine. What it is is the doctors own recipe for a swish and swallow mouth wash for Thrush. Apparently there isn't a standard and each doctor has a slightly different recipe. I know this because when I mentioned to the nurse at the radiation oncologist she asked me what the ingredients were. I said I didn't know and thought they were standard. That was when she told me there wasn't a set standard.

Back to the pain medication. Yesterday the radiation oncologist wasn't in but he was today. He took a look at the thrush infection but also said the sore throat was caused by the radiation as well. Given that I am having problems with eating he thought it best to go with a liquid pain medication. That was when the odyssey began. I went to 4 different pharmacies in our area. Only one had any in stock and they didn't have enough to fill the prescription. I went back home and started calling around. No one had it. I called the doctors office and they were surprised. Fortunately the doctor himself called me back at the end of the day and said he really preferred I was on this medicine and to have the pharmacy that only had some of it partially fill the prescription and order in the rest. I guess part of the problem is that this is a narcotic drug and is much more controlled. So off I went to the pharmacy and I explained the situation to the pharmacist. Then they had no problem filing is partially and ordering the rest. Of course I had asked the first time and they didn't seem to want to do it then. I must admit I did play the guilt card a bit. When I made my request for the partial fill I mentioned is was for pain due to being treated for throat cancer. I really didn't want to have to wait another 2 days or so. ;-)

One thing I have learned from this is that it is to the patient to be their own advocate. Everyone has the best of intentions but there isn't really anyone person looking out for the overall patient experience. I will write some more on that later.