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.