Whats Up This Week? Not Much, Yippee!

Its amazing the difference a week can make. A week ago I was feeling the full brunt of the radiation treatments and the last major chemo. It was all I could do to get out of bed and handle the feedings with the PEG tube. Now, a week later my energy level is up and I don't need to nap as much during the day.

This upcoming week the only thing on tap is a MRI for Thursday. That is to see what is going on in the nasalpharyngeal region. That will provide a update on how the radiation worked. The medical oncologist said that at this point they can't do another PET scan because of the impact of the radiation treatments. They will do when the the last set of chemo treatments are done.

Next week we meet with the medical oncologist to discuss the next steps for the last three chemo treatments. In the meantime my job is to recover from the radiation side effects. One of the major side effects are the incredible sore throat. It is so sore that I can't even swallow at this point though it has gotten a bit better in the last few days. Another side effect is dry mouth. There are various stages of dry mouth and we won't really know where I end up at for several months. As I recover some of the other salivary gland functions may come back or the may not. This could be the one significant long term side effect. Related to the throat and dry mouth is an inability to really talk at this point though that has also gotten a bit better over the last day. Lastly is the impact on my mouth. There are some sores and I have no taste whatsoever. The taste buds will come back but no one really knows how much. According the the radiation oncologist that could take up to 6 months.

My primary concern now is the recovery of my throat. I need to be able to start to swallow if I am going to get off of the PEG tube. The PEG tube was definitely needed but having to do the feedings on a schedule and such is a pain. I miss getting calories the old fashioned way, snacking all day long on junk food! Hopefully my throat will recover during the month of January. I have to admit that during the holiday season the one thing I really missed is eating.

Meeting with the Doctor... maybe?

Today we had our regularly scheduled meeting with the medical oncologist. When we got there and signed in they came over and told us the appointment was not for Thursday but was for Friday and that the Doctor wasn't there. Fortunately I had the calendar that they had given me with the the doctors appointment specifically written in on the 27th. At first they suggested we come back on Friday but Sue explained it took a bit of coordination with the kids to be available on Thursday. They checked and decided the doctor would be back in about and hour and we could wait if we wanted to. Seeing as we already were there and had coverage for the kids arranged we decided to stay.

When we met with the doctor we discussed the current state of the symptoms. We explained that the urination was still a big problem. (Part of the reason I am writing this at 5 in the morning is because I haven't been able to sleep much all night and not because the Discovery Channel had a "How Its Made Marathon" going. :-) Though if they did that would be a good reason to stay awake.) I was surprised that after the special blood samples they had taken on Monday the only results he had was the blood counts. He seemed to think that this was a side effect of the chemo drug and would go away in time. They did order another set of blood tests to check the kidney function and also to do a urine culture.

As I mentioned the other day the urinary problem is now my biggest concern. During the day I literally can not go longer than 30 minutes without the urgent need to urinate. Tonight for example I haven't been able to sleep in a single stretch longer than 20 minutes. The reason this is a big concern is that my energy level is starting to return and the inability to sleep or just not have to get up every 15 - 30 minutes starts to drag that back down. It also makes it difficult to focus on any activity for more than a few minutes at a time. Hopefully based on the tests they may have some other suggestions of how to deal with this.

After we discussed how I am now we discussed the general prognosis. So far the medical oncologist feels the treatments are working well. Right now they are going to give me a break to recover from the radiation a bit before the next round of chemo treatments start. There are 3 more treatments left but they are at a reduced dose of the main chemo drug along with an infusion of another drug. According the medical oncologist these will pack less of an impact than the first set of treatments. The other plus is that I won't also be going through radiation at the same time. Pretty much as we were told back at the beginning this last week would be the worst part of the treatment plan and that is now behind us.

At the end of next week I am scheduled for a MRI to take a look at where the main tumor was in the sinus area. Then the week after that we meet with the medical oncologist. My guess is that depending upon how I am doing at that point they will schedule the last three treatments. When all of the treatments are completed another PET Scan will be performed that hopefully will come out negative. (Once again proving I have a radioactive personality. :-))

Where's Waldo Part II

Last Sunday and Monday were probably the lowest point of the treatment so far. As I mentioned the way radiation works is it starts like a freight train. Slow at first but each treatment adds momentum. Once its over you still have the momentum to deal with.

Sue did call the medical oncologist on Sunday and they prescribed a antibiotic in case I was coming down with something. The hardest part of dealing with the down days is the ripple effect if I don't keep up with the PEG tube feedings and medicine. Then the energy level starts to drop even more. Sunday was a rough day and my primary goal was to keep up with the feedings and medicine. That alone becomes and interesting timing challenge. One thing the doctor suggested to help with the mucus was sudafed. Sue went to the pharmacy at Tops to pick up the antibiotic prescription and the pharmacist gave her a bit of a hard time about getting the "real" sudafed. (For those of you that don't know they reformulated it due to the meth heads using it to make crystal meth.) You can still get the real stuff but it is controlled behind the counter at the pharmacy and they scan your drivers license number. Either Tops didn't have it or the pharmacist didn't know what he was talking about but he directed her to a over the counter version. In his defense Sudafed has done a good job obscuring the labels so the new formulations appear to be very similar to the old stuff. I can tell you from experience that the two are nothing alike in results.

So Sunday the goal was just to lay low and endure the situation. On Monday morning I felt a bit better and didn't see the need to go the doctors office. I already had all the prescriptions I needed and I wasn't sure I was up to the trip. Also we have a regular appointment with them on Thursday. Then much to our surprise the doctor called us at home that morning to see how I was doing and ask that I get some lab work done and come in for a visit. They were closing at noon that day and would be closed on Christmas so he wanted to make sure I was set. Bonus points for the medical oncologist. This time the blood work was a bit more involved than the normal take a tube to check cell counts. The did that but also took two separate samples from each arm to check for other stuff as well.

We met with the doctor and it turns out I have yet another side effect from the chemo. It appears that I have urinary tract infection. Basically it means that I have the urgent need to go to the bathroom on a regular basis but most of the time its a false alarm. (There is more to it than that but I will leave that up to your imagination. :-)) We should find out more about that when we meet with the doctor tomorrow.

On Christmas I started to feel a bit better. I was able to get up and unwrap presents with the family and play some video games during the day. The biggest distraction is the urinary tract infection. It is very disruptive (not to mention uncomfortable :-)) and doesn't let you get much sleep at night.

On Wednesday I definitely started to feel a bit better though the infection was still there. The antibiotics I am on should be helping that soon I hope. My guess is that I have bottomed out from the radiation and should start the road to recovery from that phase soon. Tomorrow we meet with the medical oncologist and aside from going over the rest of the chemo schedule I want to get his take on how the treatment is progressing. I will post another entry after the visit.

Wheres Waldo Update

It has been a few days (4 to be exact) since the last radiation treatment. It is a bit different to now have to go to someplace for treatment every Monday through Friday. One benefit to going in every day is bouncing questions off of the people at the radiation facility about different side effects I may be experiencing. Now the only way to do that is call the oncologist office. That is what we plan to do today.

Its Sunday and the mucus situation hasn't gotten any better. It actually making things worse at this point. I was told that the week after the radiation treatment ended would be the worse and it is living up to that point. The biggest problem is the inability to get comfortable in any position for any length of time. This has also disrupted any type of normal sleep pattern. Hopefully when we talk to the doctors office today they can make some suggestions on how to deal with the mucus situation. My guess is that the radiation treatment to the sinus areas has aggravated the mucus production and is causing the problem. According to the radiation oncologist the impact of the radiation treatment will accumulate until about 1 week after treatments stop. That would put the low point at Wednesday and then things would start to pick up slowly.

Hopefully there is something that they can do about the sleeping. One thing that would make this a bit more bearable is the ability to just zone out part of the time. There isn't much on TV late at night (other than get rich quick schemes and advertisements for certain "enhancement" products) After awhile the food channel AKA the Food Porn Channel gets a bit old. BTW have any of those people every had to actually consider the ingredient cost and clean up time when they are cooking? :-)

So hopefully the oncologist will have some suggestions today for what we can do to help make things a bit more comfortable.

Update on Chemo III: Still a Tropical Storm

This chemo treatment seems to have more of an impact than the second one did. Its not as bad as the first one but I am experiencing fatigue today and that is something I haven't seen in awhile. I am also having the same mucus problem that caused me concern a few weeks ago. So far it is being managed but in general it is uncomfortable and does make it difficult to sleep. Hopefully as I get another week between myself and the chemo treatment this will start to abate. Also at that point I should start to recover from some of the radiation effects.

Chemo III Update and Last Radiation Treatment

Final Radiation Treatment!

Yesterday was my last radiation treatment. 35 out of 35 completed right on schedule. Yippee! After the treatment they gave me the mask to take home as a souvenir along with a certificate showing I completed treatment. I have to say again that everyone at the radiation facility were great to work with. Their positive attitudes and the overall environment of the place definitely helped me during the treatments. According to the radiation oncologist I will experience some of the incremental negative impact of the radiation for the next week or so. That is due to the lag time between treatment and the impact hitting me. After that I should start to feel better. I won't miss going in for the daily treatments but I will miss the people at the radiation medicine center.

I think I should start to see some improvement soon. I know that when I had 2 days off on the weekends Sundays were generally good days. Also I don't need to work the timing of the lotion for my neck or feedings around the radiation appointments. BTW on that note I can't imagine having to coordinate all of this if I had to drive up to some place that was an hour and a half away for treatments.

Chemo III Update: Not A Hurricane, More Like A Tropical Storm

Yesterday was a bit rough regarding the chemo. Nothing like the first time but I did have a persistent indigestion. Enough so that I scaled back the amount of food at each feedings and increased the number of feedings during the day. I think part of the indigestion comes from the support drugs that you get put on for the 3 days after chemo. I am finished with those now so hopefully today will be a better day. All I ended up doing yesterday was feedings and then manage my body position in between feedings. I think I mentioned that right after a feeding I feel best if I sit back at a reclined angle. That was definitely true for yesterday. Even standing upright let alone leaning over to wash hands or use a keyboard would cause problems. Fortunately I was able to keep everything down and was able to get in all the various drugs and such that were required. Just doing so became a full time occupation.

Whats Up Next

The next several days are clear of any appointments. I have to have some blood work done after Christmas and then meet with the medical oncologist to go over the next steps for the follow up chemo treatments. Based on what the radiation oncologist has said I have responded very well to the radiation treatments. I will be interested to get the medical oncologist opinion on how the treatments went and the what the rest of the game plan is when we meet next week.

Chemo III: Day 2 Report

Once again not much to report today and that is good news. I had my 34th radiation treatment today and now there is only one more to go. So far my condition at this point in the treatment process is better than I had thought it would be. After the second chemo treatment when I was having a problem keeping food down I imagined I would be a lot worse at this point. Instead the only major side effect that has been added on with the third chemo treatment is tiredness. I found that I am sleeping a lot more on day 2. Looking back at my notes from the first two treatments I was also sleeping a lot more in the days following treatment as well. I don't think I noticed it as much because so many other side effect were going on. This time around I have the feedings under control, I actually gained a pound over the last week. I also have the mucus discharge managed. lastly the radiation plan was changed for the last 8 treatments and that has allowed some parts to start to recover.

So far so good for chemo III. One of the benefits of my last radiation treatment being tomorrow is that I don't need to take the appointment time into consideration when applying ointment to the rashes on my neck or when I do the feedings. As a rule I can't put anything on my neck 4 hours prior to treatment. When they are schedule for the morning this means that I don't but anything on at all in the morning. Also I try to schedule the feedings so that they are at least one and a half hours prior to treatment just so things settle before treatment. I also don't want it to be too long between feedings so that my pain meds wear off while I am there. After tomorrow I won't have to take that into consideration. Hopefully the tiredness will follow the same pattern as the previous two chemo treatments and subside after day 3. Who knows I may actually start to get back to my normal energy level. It will still take some time for my voice, throat and taste buds to recover and of course there are the 3 follow up chemo treatments but after tomorrow the worst should be over. Yippee!

Chemo III Day One Report

So far there isn't much to report about day 1 and that is good news. I arrived at the hospital around 8:00 AM and was put into a separate room for this chemo treatment. No... its not that I am such a difficult patient they wanted isolate me. :-) The setup at the hospital is that they have a few chemo chairs that are separated by privacy screens and actually given a good amount of space. They also all have TVs and of course the WiFi connection. In addition to those areas they have a room off of the chemo area that can be used to put a bed in if needed for patients that may require a bed or additional procedures. I also think I saw a prisoner being treated in there once. Today there wasn't any situations that required that room and since I was probably going to be there all day they gave it to me. It was nice because I was able to spread out my stuff and not have to keep getting in and out of the chair to get it. I also have to say that the people at the hospital were very nice and accommodating as always. They were right there with me hoping for the correct blood count so the treatment could go ahead. That was nice because I really was concerned about not being able to go ahead today.

I seem to be bringing more and more stuff with me to these appointments. Today I had my normal "cancer bag" stuff that includes all my paperwork since the start, notes and prescription info along with the log of my feedings and drug usage. Then because I was going to be there all day I had to bring my feeding stuff with me and that includes the drugs I needed to take during the day, the plastic syringe that I use to set up the feedings and a few other miscellaneous items.

Then on the electronics side I have my notebook computer and today I brought my iPod Touch that I used for the first posting from the hospital. This lets me get some work done while I am there even if it is just reading up on some technology articles.

The treatment pretty much went off with out a hitch. There was one point that I did have the dry heaves during the day but I thing that was from swallowing too much mucus. My throat has started to feel a bit better or at least to the point where I can talk more than one word answers if I use the spray bottle to keep my mouth moist. I think I over did it in the morning because not much later I had the dry heaves. Lasted about 5 minute and then I was fine. Its the same thing that occasional happens at night when I get up and the mucus all rushes down the back of my throat. Aside from that everything went well and I was ready to head back home at 3 in the afternoon. One effect that did hit me was tiredness. I napped a bit when I got back home and then went to sleep around 9:00. I don't normally set an alarm for the meds because as a rule I never sleep more than a few hours without waking up. In this case I slept straight through to 3 in the morning. Needless to say I will have to catch up on some feedings on Tuesday to make up for it. Still it felt nice to sleep that long.

Everything else is going fine. I am curious to see what the impact of this chemo will be. The first one was the worst. Part of that was due to the abdominal pain caused by constipation on the day of chemo and part of it was due to the shifting pressure in the sinus region as the chemo and radiation started to do their stuff. Also it took about a week to get dialed in on the nausea medicine. With the second chemo I was still in the first week of using the feeding tube and there were some adjustment issues to having the all liquid diet along with getting enough feedings. Still the impact wasn't too bad. With this treatment I have the feeding tube stuff dialed in, the pain and nausea medicine is all set and now the radiation treatment is actually different. Also there are only two radiation treatments left. (Big time Yippee! on that one) So for most of the recovery time for time for this chemo I will not be getting radiation treatment. Taken all together I am hoping that this chemo treatment will have the least amount of impact.

One last thing to note is that fatigue as a side effect hasn't really come back since the first treatment. I do get tired but then I just sleep. Fatigue was feeling tired but not being able to sleep. Hopefully the trend will continue and fatigue will stay away this time.

BTW did I mention that there are only two more radiation treatments left to go? Yippee!

Chemo III is a go!

I am writing from the hospital and the blood work just came back with good results. My white count is in the acceptable range so chemo is on for today. Yippee!!

Note: I am not looking forward to the chemo but it is a major milestone. Also just a FYI this blog post was created using the wifi access and web browser on the Apple iTouch. It works pretty well as a portable web browser and I get to listen to music while surfing. :-)

Chemo No. 3 Take 2

Chemo treatment number 3 is scheduled for tomorrow. Of course this will depend upon my blood counts. Hopefully they have recovered enough so that I will be able to take treatment number 3. This is the last of the major chemo treatments. There are still 3 more of the follow up treatments but the impact of those is supposed to be less. I am not looking forward to this last major treatment but I do want to get it out of the way.

At the same time only 3 more radiation treatments left to go. I don't think I have mentioned this before but during radiation treatments I can bring my own CD to play. No offense on the music track they run at the hospital but I definitely prefer bringing my own music. On Wednesday I will be finished with radiation. Yippee! With radiation treatments the weeks start off OK but by the time Thursday and Friday roll around I am just beat. Then I have Saturday and Sunday off and in general Sundays are not that bad. Of course come Monday its back to the radiation again. This week is different. Only 3 treatments and then plenty of days to recover. I have never had 3 days off in a row so I can't imagine what next weekend will be like. Now the chemo will help compensate for the lack of radiation but even with that I should start getting a bit better each day after the radiation treatments are completed.

If I can complete the chemo on Monday then by Wednesday of this week I will be finished with the major portion of the treatment plan. That will be quite a milestone accomplished. Also it means I can slowly start to get better. A major portion of cancer treatment is trying to keep the patient healthy while they kill the cancer. Now that I am almost through the worst I can look forward to the recover time. Hopefully 6-8 weeks from now my throat will have recovered from the radiation treatments.

Two new side effects that I am experiencing this week is tiredness from the low blood counts and radiation burns on my neck from the treatments. The burns on my neck are like getting a very severe sunburn where it starts to blister. This is one of the cumulative effects of the radiation treatment. With the change in treatment plans this last week the impact on the front of my neck has been reduced but the sides and back of the neck have continued to get worse. They have me using a prescription anti biotic cream that is used for second and third degree burns or getting skin grafts from skin burns. The plus side is that there are only 3 more treatments left and then those areas can start to heal. Right now the goal is to just manage the burns and try to prevent them from getting infected.

Chemo 3 .... Then Again Not Today.

Today was supposed to be chemo treatment number 3. I was scheduled to be at the hospital for this chemo treatment and Sue dropped me off right at 8:00. Being at the hospital is much more convenient with radiation treatment and the WIFI access that they have.

I got checked in and the first thing they do is start an IV with fluids. They also draw blood to check your cell counts. They got the IV in, took the blood sample and started the fluids. The reason for the fluids is that you need to urinate a certain amount before you get the main chemo drug. A bit before 10:00 I went over to radiation and got my treatment. BTW the new treatment plan only takes about 10 minutes. Hopefully with the smaller number of fields and smaller field sizes some of the side effects will be mitigated. Also now there are only 6 radiation treatments left!!! :-)

After radiation I got back to the chemo room and and it was time for a feeding so I started on that. That was when the nurse came over and said that my blood count, in particular my white blood cells, had dropped to a level that meant I had Neutropenia. They had to put a call into the medical oncologist to see how they wanted to proceed. There is a drug that they can give you to up the white blood cell count but unfortunately they can't give it to you while you are under going radiation treatment. :-(. To make a long story short they decided to cancel the chemo treatment for today. The concern was that this next round of chemo would drop my white blood cell count through the floor. I am already susceptible to infection and this would have made that much worse. The plan now is to try again for the third chemo treatment on Monday. They seem to feel that my white blood cell count should recover enough by then.

This is a disappointing set back. Its not that I am looking forward to chemo but there I was all hooked up and ready to go. On the other hand it is better to be cautious. They reminded me again today that this particular treatment plan with 35 radiation treatments and the 3 strong chemo treatments is one of the rougher ones available. The key is being able to complete it in one piece.

So what is Neutropenia? It is defined by having a white blood cell count of less than 1,000 per mm. The normal count is 4,000 - 11,000. It means that it is easier to get an infection and harder to fight them off. They key is to be vigilant in trying to prevent infections. Also be aware of any signs of infections. This includes things like fever, chills or night sweats. To help prevent infections there is a long list of foods to avoid. Not a problem as everything I intake now is done through the canned nutrition provided for the PEG tube. (I knew that tube would come in handy.) Also avoid groups of people, avoid public places and anyone that is sick. They also gave me some of those surgical masks to wear if I do end up having to go out at all.

The only real effect that I am feeling from the reduced blood counts is due to the drop in red blood cells. I tend to be tired more often and need to take naps during the day. Fortunately the radiation treatments will be completed by a week from Wednesday and more options should open up. Also the daily collateral damage that comes from radiation treatments will be over and I can start recovering from those side effects.

Retargeting The Air Campaign: 8 More To Go

Only 8 more radiation treatments to go. This is typically the point where the cumulative effects of the radiation really start to build. Right now we have the pain medication dialed in but the dry mouth / mucus is still a big problem along with the damage to the skin. Today I started using a prescription skin treatment and hopefully that will make it a bit more bearable.

There is new information from the front lines. A week ago they did another CT Scan on my to check the progress and adjust the radiation treatment plan. For the first 27 treatments the machine would take 7 different positions around my head and I would get treated with 2 "fields" from each angle. A field is a treatment area. The head of the machine has these fingers that adjust to form different shapes for the radiation beams. When treating an area these fingers will move during the treatment adjusting how much radiation goes into a specific area in the field. This is what helps them focus the radiation on where it needs to be and help reduce the collateral damage. For the first part of the treatment plan I was essentially getting zapped 14 times per treatment.

Starting next week based on the new CT Scan they will be treating 8 different fields. I think the fields should also be smaller. This means that I should be getting less radiation overall than I did during the first part of the treatment plan and at the same time focusing the radiation on where it needs to be. One of the things that can change during treatment is the positioning of some of the tumors. This can be due to the weight loss and the tumors shrinking. Fortunately the radiation oncologist I am seeing does adjust the plan during treatment. Not all radiation oncologists do this.

On Friday I asked the radiation oncologist if he could show me the CT Scans. Up to this point I had never seen them. He wheeled in a notebook stand and went over a side by side comparison of the scan before treatment started and the one used to adjust the treatment plan. Looking at the CT Scans was very interesting and the doctor took all the time needed to answer my questions. The first thing that surprised me was that the scans were black and white. I didn't know what I expected but based on being given IV dye contrast I thought the tumors would just jump out at you in color on the screen. Instead what they do is look for abnormalities in each slice. (For those of you that don't know a CT scan is a group of images that are essentially horizontal slices. In this case its like they took successive slices starting at the top of my head.)

One of the things they look for in the CT Scan are masses that are not symmetrical, that is things that are on one side of the neck but not the other. The also look for masses that appear on only a few slices but not others. It really comes down to the doctors having quite a bit of knowledge in the anatomy of the head and neck and being able to identify what should be there and what shouldn't be there.

On the notebook screen he was able to bring up both CT Scans side by side and scroll through the slices in unison. The mass in the nasalpharyngeal region was pretty much all gone. There was a bit something there that they were not sure if it was tumor, scar tissue or mucus. Just be sure they are going to treat that area. The larger tumors in my neck were significantly reduced. It was very interesting to be able to see the before and after images and I was glad that the doctor took the time to go over them with me.

I also wanted to give an update on the PEG tube. It has been a few weeks since I joined the collective and I think I have finally gotten the hang of the PEG tube. Using the tube isn't difficult at all. Basically there is a plug on the end of the tube that you open up and clean with an alcohol wipe. Then there is a large plastic syringe that fits into the tube. From there you just pour in what you need to put in the tube. Before you start you need to run 30 CC of water through the tube just to clear it out and at the end you do the same.

The trick to using the tube is scheduling. The goal is to have 7 to 8 cups of a canned product that is similar to ensure a day along with 5 to 6 cups of water. At the same time I need to put the medication in through the tube. Some medication is once a day, 3 times a day or every 4 hours. Right now I am on 4 different medications that go through the tube. When chemo starts that goes up to 5 for a few days. At first I would try to coordinate the feedings and medication so that I would have to use the tube as little as possible. I also learned that if you have 2 cups of food in through the tube it is a good idea to stay seated for awhile. It took me a week or so to figure that one out. :-)

Part of trying to coordinate everything so I would have to use the tube as little as possible was a reaction to my lack of enthusiasm for the tube. What I didn't realize was that this was actually making it harder for me. What would happen is that if I was not hitting my water goal I may try to sneak in an extra cup of water along with 2 cups of food and medication. To put it delicately your stomach can only take so much volume at once and that did cause problems. There is nothing more depressing than throwing up your pain medication knowing you can't take more for a few hours. :-(

After a week or 2 I started to become more comfortable using the tube and separated out feeding, medication and hydration. While this requires me to use the tube more during the day it also makes it much more comfortable for me. For example this morning I actually was able to sleep in a bit so when I got up I had 2 cups of food and two medications but no water other than the minimum. I had to sit still for a half hour just to allow things to adjust but then I was fine. An hour later I had a cup of water. That took all of 5 minutes to administer and a sat still for around 10 minutes. Yesterday for example I was able to take in all of the food, water and medication that was required by using the tube 9 times. Several of those times were just for medication. When I just do medication I am able to get up and get moving with no problems at all.

On tap for this week is the revised radiation treatment plan and chemo number 3 on Tuesday. While I am not looking forward to chemo therapy I have noticed that the tumors shrink more in the days following chemo. Hopefully between the next chemo treatment and the last 8 radiation treatments the tumors will be completely annihilated.

Another Field Trip and 9 More To Go

Only 9 more radiation treatments left to go. Yippee!!! While celebrating that milestone I had to take another field trip up to the lab at the hospital today. Last night I again ran a fever of over 102 only this time I did show some other symptoms such as a brief period of the chills and night sweats. The fever was able to be controlled with Motrin. This morning I called the medical oncologist office and they had be go up to the lab at the hospital for more tests and to get chest x-rays done. Fortunately they were able to coordinate this with my appointment for radiation. This time they are not waiting for the results to come back and have started my on antibiotics. The medical oncologists office called in the prescription for us to pick up and much to our surprise they had a hard time finding a pharmacy that carried this drug. We ended up getting it at a pharmacy downtown. Of course distance is relative here and this pharmacy was only 10 minutes away. I have to mention again the benefits of having all of the treatment and testing options available locally. The lab, x-ray and radiation facility are all a the hospital and relatively close to each other. To get my radiation treatment, x-rays done and the labs took only 1 hour and 15 minutes. Very convenient.

At the same time we have been working on the pain medication for the last few days. The one that they had me on wasn't lasting long enough between doses. They did tell me I could up the dose but when I did that it essentially put me to sleep and still wore off before it was time for the next dose. The radiation oncologist then put me on a patch. This has some advantages. First the patch lasts 3 days so I don't have to worry about getting up to take it every 4 hours. Second is that its profile for delivering the medicine is pretty much uniform. This particular medicine also helps dry out the nasal passages and mouth so it helps with some of the mucus flow at night. One patch wasn't enough so we moved to two patches at a time. I am also still taking the initial pain medication. when both of the two are working I don not feel to much pain in my throat and mouth. When the initial one wears off I feel more pain but not as bad as before I was using the patches. Talking at this point is very difficult and can be painful beyond one or two word answers. I apologize to anyone in advance whose calls I screen. Its nothing personal but I do need to save my voice when possible.

I am excited that there are only 9 treatments left. At the same time I approach the next 3 weeks with some apprehension. This is when the impact from the radiation treatment is supposed to be the worst. Also I have my third chemo treatment next Tuesday. The major impact of the radiation treatment is the "mother of all" sore throats and mouth, dry mouth which is very painful at night and the skin on my neck is starting to feel like it has had a severe sun burn. To treat the later I am using a skin moisturizer.

The reason I said it is the next 3 weeks that I am approaching with some apprehension is that the radiation treatments will be done is 2 weeks but the impact of the treatments continues to make you worse for a week afterwards. Fortunately for that last week I won't have to keep making daily trips for radiation treatment. If I need to I can load up the pain medication and not worry about sleeping through an appointment. :-)

Update From The Front Lines

Today I met with the radiation oncologist to go over the results of the latest CT Scan. All in the news was very good. At the point the scan was done we were 60% of the way through the radiation treatments. The tumors have shrunk much more than that. The radiation oncologist said the goal is to have the tumors completely gone when radiation is complete. What they are going to do now is increase the dosage on the smaller tumors and reduce the overall target area. Hopefully this will minimize some of the effects this is having on my throat. There were some areas that they couldn't tell if it was scar tissue or tumor so they are going to target those as well.

At some point after this is done they will use the scope up my nose to check on the nasalpharyngeal area. If there is a suspect area that the can't tell if its scar tissue or a tumor then they will do a biopsy. Once everything is completed they will continue to run test on me every few months for the first year and then on going for the rest of my life.

So the report from the doctor in charge of the air campaign was all positive. At this point there are only 12 treatments left. Two weeks from Wednesday I will be finished with this phase. Yippee! I was told to expect the sore throat to continue to get worse for up to a week after the final treatment but then start to improve over the next 6-8 weeks. The taste buds on the other hand can take up to 6 months or more.

Another Field Trip

This weekend brought another field trip to the hospital. I started to run a temperature on Friday night. Motrin was able to keep it under control and on Saturday we called the medical oncologist. They sent me to the hospital for a blood test. The hospital actually is a pretty quick place to get the test done. They wanted to make sure that my white cell count was still OK. I didn't have any other symptoms and the white count was OK so we just had to monitor the temperature and control it with Motrin. By Sunday the fever seemed to go away.

We did mention to the doctor that the same thing happened at about the same interval after the first chemo. It may just be a coincidence but it seemed odd that it happened again at just about the same number of days.

One other thing to note is that at this point all medicines have to go through the PEG tube. Some things work out better than others. Motrin in an example of this. It really doesn't crush up and dissolve in water well. Its the outside shell that is the problem. Not too worry. The children's motrin is in liquid form and you can take that in a large enough dose to be the equivalent of an adult dose. I did the same with Benadryl.

Tomorrow I meet with the radiation oncologist and get the results of the latest CT scan. I can feel the tumors in my neck shrinking but I am curious as to how far along things really are.

Three Cheers for the Cruise Industry

So far the sea sickness patch seems to be working. It hasn't totally stopped the mucus flow but has made it much more manageable. Yesterday I was able to take in over 2,000 calories and lots of fluids. Having the proper nutrition and hydration really make a difference in how I feel. Hats off to all those people that got sea sick on cruises. Enough to create a market for sea sickness patches. Their sacrifices are greatly appreciated. :-)

On other news the CT Scan to adjust the radiation treatment is scheduled for Friday. I am allergic to the contrast dye that is used during the scan so there is some medication I have to take prior to the scan. Afterwards I will take Benadryl. Once the scan is done it takes about a week to work out the new treatment plan. Once the plan is created it is tested on the machine using water and some special rods, or at least something like that. If I get a chance I hope to ask the radiation techs how that works. I will be interested in the results and hopefully on Monday I can discuss them with the radiation oncologist. The tumors are definitely shrinking and this will provide a measure of how much they have shrunk.

Anchors Away: A New Side Effect

Its been a week since chemo treatment II (And only 16 radiation treatments left to go) and a new side effect has appeared. One of the side effects of radiation treatment for head neck and throat cancers is dry mouth. Another side effect or maybe its part of that is that your saliva and mucus becomes very thick. Thick to the point where swallowing it with water isn't really possible. What happens is that it just sits there in the back of your throat until enough accumulates and the gag reflex kicks in. You can imagine the rest.

This started to appear on Sunday and yesterday really became a problem. One of my tasks during treatment is to make sure I get enough nutrition and hydration. This latest turn of events, aside from the obvious discomfort, has started to cause a problem in that regard. It appears to get worse during the day so I suspect that the radiation treatments may trigger an increased production of this a few hours after treatment. It also makes it hard to sleep as well.

Today I started a plan of rinsing my mouth out and using a "spittoons" of sorts to handle the saliva. There isn't much that I can do about the mucus that drains in the back of the throat. I was so wiped out this morning that I ended up moving my appointment for radiation to later in the day. Turns out that didn't work so well but the people at the radiation center did get a demonstration of what I am going through. :-) (I will leave this to your imagination.)

So where does the Anchors Away reference come from? One of the ways to help mitigate this is to dry out the nasal passages. Enter the prescription sea sickness patches. A side effect of the sea sickness patch is that it dries out your mucus and saliva. It takes a bit for the patch to go into effect so hopefully by tomorrow I will notice some difference. Who knew that at the same time I am getting treated for cancer I could also be preparing for a cruise.

Seriously this is the one side effect that does have me a bit concerned. I've lost about 15 lbs so far. The ability to keep food and medicine down is important to the treatment regime and this does hinder that ability. And of course there is the down side of how it feels as well. :-)

The Arial Campaign Hits the Halfway Point!

Not much to report except that today was radiation treatment number 18. That puts me over halfway done with the major portion of the treatment plan. Just to update people the major treatment for nasopharyngeal carcinoma is 7 weeks of radiation along with 3 chemo treatments. Its a fairly intense treatment plan. I took a look at the completion rate of some of the studies and roughly 65% of the people starting the treatment plan complete it. Right now I have completed 18 out of 35 radiation treatments and 2 out of the 3 major chemo treatments. That puts me 51% done with radiation and two thirds of the way done with the major chemo portion. At this point I am feeling confident that I will complete the major treatment portion of the plan on schedule. Yippee!!

Of course afterwards there is a follow up treatment plan of up to 3 chemo treatments. That treatment is a reduced version of the chemo drug I was on during radiation along with an infusion of something else. From what I have been able to learn this treatment is designed to get any stray cancer cells. When talking to the people up at Rosswell this is the one area that there hasn't been much comparison studies on. There hasn't been any studies comparing the effectiveness using IMRT radiation and chemo at the same time with the follow up chemo versus not having the follow up chemo. From what I understand they will rescan me at the end of the radiation as a baseline to see what else needs to be done and determine the number of treatments from there.

The tumors are definitely shrinking in my neck. I can't really tell about the ones in the nasopharyngeal region. Ever since the second week that area has felt better. The radiation oncologist did take a look with a scope a week and a half ago and there definitely was progress in that area. One of the the things that would be nice to have but isn't possible is a regular update on how the tumors are shrinking. I am not asking for something fancy but it would be nice to have weekly updates, maybe with a visual telestrator type of prompt, on how the war is going. Then again at the cost of a PET scan that may not be the most practical thing to do but I can dream.

The biggest issue I am having now is the thrush infection. I won't bore you with the details but right after chemo treatments this goes wild in my mouth. Unfortunately with the effects of the radiation the "Miracle Mouthwash" (I just love that name.) isn't as effective. It is just too difficult to take. Today the radiation oncologist prescribed a drug that I can grind up and take via the feeding tube that should help get that knocked down.

I did talk to the nurse at the radiation oncologist office about the recovery time once the radiation is completed. It can take about 4-6 weeks for the throat to recover. The taste buds can take up to 6 months. At first people only start to taste strong flavors and in some cases your taste does get changed permanently. This could put me back to starting to eat normal food again in mid January with my taste coming back in the late spring. One thing I will have to do is alter my food list to start with spicy or strong flavored foods first. Maybe a Stilton blue cheese jalapeno burger with habenaro sauce would be the way to go. Then again maybe I should ask what to start with. :-) I imagine that there is a recommended way to go from an all liquid diet back to a solid one.

Chemo II: Update

It has been four days since my second chemo treatment. So far no hurricanes but the other side effects have come back. In the mornings I generally have more energy than later in the day. I am more tired during the day and fatigue has set in. As I mentioned one of the best things I have found for fatigue is to get up and walk around a bit or do something basic. This evening I went out to the store to pick up a prescription refill. Sue would have gone but it was good to get out of the house for a few minutes and I choose a time when it wouldn't be busy. I have found that it is definitely good to get up and at least a bit active during the day. Sometimes that may just be walking around on a single floor.

I am adjusting to having the feeding tube. It is hard to pin point what causes what side effects but I am learning some basics about the tube. The first thing is that right after doing a feeding I should recline just a bit for about 15 minutes to give my stomach time to settle. Getting right up and starting to clean up is not the best idea I have found. This technique seems to have reduced the indigestion and the amount of "formula" flavored burbs. :-)

One thing I am doing during the feedings to keep my mind preoccupied is watching some mindless TV. Lately I have been watching the Food Network or as I like to call it the "Food Porn" channel. It may seem a bit strange to watch cooking shows when I can't eat food right now but I find it actually helps me. I am getting lots of great ideas for things to put on my food list.

One of the side effects that has come back from the last chemo is I am having a lot of mucus discharge from the sinus area. At first I thought this was from being backed up and it was released after the first chemo and start of the radiation treatments. Since then I have asked some questions and mucus is one of the bodies ways of dealing with dead cells. I like to think that the second wave of ground troops (The chemo treatments) have made their first strike and the mucus is a sign of the cancer cells being killed. This is something I will have to ask the radiation oncologist about tomorrow.

Monday will be a milestone for the radiation treatments. That will be treatment number 18 with 17 left. Just a bit beyond the half way point. Yippee! I know that the last half will be a bit of a rough ride and that there is more chemo afterwards but getting to the halfway point is a nice milestone. As I mentioned in a previous post there are also some visible effects to the radiation. The hair on the back of my head at the base did fall out. This is one of the 7 target areas. Also some on one side above my ear. Nothing major but there was some radiation fallout. :-)

The other radiation side effect is I am starting to notice some skin burn. This will be worse and there are some treatments for it. The radiation oncologist mentioned that when the tumors shrink the skin irritation could get worse. I view that as a small price to pay if the treatments are working. Hopefully when they adjust the treatment plan some of that will be minimized.

Chemo Part II: Day II No Hurricanes so far.

Day II went pretty well. The biggest challenge is keeping up on the feedings and in particular water. I have found that two 8 ounces cans of the "food" I am supposed to take at a time is pretty hard. It just fills me up too much. I am working up towards that but it will take some time. Today I did hit 1500 calories, a bit short of the goal, but I also got in 64 ounces of water. One of the big things with Cisplatin is to consume 64 ounces of liquid a day for the first 3 days to get it out of your system. This helps avoid kidney and liver damage. I think the stuff they gave me for feedings counts but I am also taking in extra water through the tube just to be sure.

The other thing different this time is that I started right off with the medications when I got home. That also seems to have helped. The only really discomfort is from indigestion after the feedings. I think that has to do with the volume. The belt setup arrived yesterday to hold the feeding tube and that has worked out real well. The company, NedMed, was great to deal with. I couldn't find a reseller with it in stock so I sent the company an e-mail to get pricing and where to order it. They were able to sell it to me directly and bill me for it based on an e-mail. Very consumer friendly. The shipping fees were very reasonable and it arrived in 3 business days. They are a small company but I would recommend their products to anyone. The person that answered my e-mail even took the time to read through my blog and with me luck with the treatment.

The other change from the last chemo treatment is that I have been under going radiation treatments now for 3 weeks. While my throat has gotten worse over the course of the treatments I have noticed this last week that the radiation has had less of an impact on how I feel afterwards. It is only speculation but I think that the tumor was putting a lot of pressure on several areas in my sinuses. As the tumor in that area was getting zapped and started to shrink other areas were moving around as the pressure was relieved. There was also a lot of mucus that was released. I think these changes may have accounted for some of how I felt a few hours after each treatment. That appears to have eased at this point. Right now the big thing is fatigue. Even that seems to be better than last time but I do need to take naps during the day. In another post I will talk about one of the other effects of radiation and that is skin irritation and some hair loss.

Chemo Part II

On tap for today was my second chemo treatment. This one started off a bit awkward but so far I appear to be doing better than last time. Here is what happened. My first Chemo treatment was at the hospital because the medical oncologist chemo area was booked to capacity. The hospital offers several advantages for chemo in my situation. First it is on the same floor and in the same building as radiation medicine. I was able to just walk over from chemo to the radiation facility when it was time to get treated. Keep in mind it can take 6 plus hours to deliver the chemo that I am getting. The second advantage is that they have public wifi access at the hospital. I was able to bring my notebook and catch up on e-mail, do some work, update the blog etc. Also the facility at the hospital is a bit more roomy, offered more privacy and they had TV's for each station.

So at my first treatment the people at the hospital scheduled me to be there for the second treatment. I was already scheduled to be at the medical oncologist office but we agreed that it would be better if I was there. Last week when we had our appointment with the medical oncologist (who didn't make the appointment, we saw the nurse practitioner instead.) we mentioned that I was scheduled to be at the hospital and why. The nurse practitioner agreed, or at least we thought so.

This morning I showed up at the hospital and they called to check on the meds with the medical oncologist and the medical oncologist decided that they really wanted me at their facility. They really didn't have much of a reason for it other than they wanted to monitor me but they insisted on it. I explained that I used the public wifi for work but the doctor said that wasn't something they could consider. So off I went to the medical oncologist office. They are located in a set of buildings in front of the hospital so it only took a minute or two to get there.

Once there it took awhile to get started. I asked them about the radiation treatment that was scheduled for that day and they really didn't have much of a plan. Fortunately the radiation office is very flexible and they let them move the appointment around. This time the chemo took all of 6 hours to deliver. The last radiation appointment available was 3:30 and I was literally leaving the chemo office at 3:25. Because of the scheduling conflict they offered to drive me over to the radiation office. For the next chemo treatment they do have me scheduled at the hospital. I think they figured out that with the radiation treatments and the length of my chemo it just makes it easier to coordinate.

So far I am not having the same reaction I had last time. This time we are being proactive and taking an additional anti nausea medicine once I got home along with another drug they prescribed when I had the reaction last time. I also think part of it is that I have not eaten as much prior to the chemo. Last time it was my first treatment. In the week before I had had several large meals prior to starting treatment. Kind of a culinary going away party. While tasty it may not have been the best idea. :-)

I will post more tomorrow to update on the progress but so far so good.

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.

22% Complete and a Field Trip

On Friday I had my 8th radiation treatment. That puts me a 22% complete. I also got the drug to protect the salivary glands. That didn't go so well. This time my blood pressure dropped a bit though it did come back. In general as the week went on I found that the radiation had a bigger and bigger impact. Now I get 2 days off! Yippee! I also changed my time on Monday to a bit later in the day and I think I may see if I can make that permanent. The mornings are good in general so if I have the radiation in the afternoon it would give the the entire morning to get things done.

One thing I am noticing now is that it feels like the tumors in the neck are smaller. I don't know if its just my imagination but they definitely feel smaller. The radiation oncologist said they would do another CT Scan about halfway in to adjust the treatment. I may ask on Monday if they can do it earlier. The one downside to radiation is that it does cause some permanent long term side effects. My thought is that we should look to adjust the treatment as needed if the tumors are shrinking to help minimize those side effects. Then again it could be my imagination and the tumors are not shrinking that much yet. They told me I probably wouldn't notice a change until 2 weeks but I started to notice it early this week. Of course the main tumor in the nasal pharyngeal area I really can't tell the size of. I do know that after a few days the sinus pressure and headaches that got all of this started went away.

Yesterday I was pretty wiped out after the radiation and crashed most of the day. Around 5PM I started to notice I was warm and checked my temperature. Sure enough I was at 101. The medical oncologist wanted to know about anything over 100 so we called. They called back and it was time for a road trip to the hospital to have some blood work done. We had to scramble a bit because both kids were out at activities. Fortunately Sue made a calling list and we were able to make sure things were taken care of. Things went pretty quick at the hospital. We had to wait around for the test results and the doctor to call back but we weren't there more than an hour so it worked out OK. My blood counts are all still good though that will change I am told. They didn't notice anything else so they sent me home to see how the weekend goes. The fever did hit a high of 102.7 but with Motrin it comes right down. Fortunately we meet with the medical oncologist on Monday to review where things are at.

This weekend I am laying low. One thing I have done is started re-reading the Patrick O'Brien Aubury / Mauturn series of books. Its 20 books written in the language of the early 19th century about the career of a officer in the British Navy. The movie Master and Commander is based on these books. (A great movie by the way.) It took awhile to really understand the language and nautical terms in the books. Eventually I purchased a companion dictionary. Its been a few years since I finished the series but now that I go back and start to read them again I find I have a much better understanding of what it going on. The books are short, less than 500 pages, and easy to pick up and put down. That makes it great reading to take with me to appointments. The series is an acquired taste but if you liked the movie and like to read I recommend them. Fortunately I have all 20 books here so I can just grab the next one as I go. I think they now sell the books in combined volumes with multiple books bound together. In some ways that makes sense. These books have often been refereed to as one long book with each book being a separate chapter.

And one last thing from the cruel irony column. Some of you may know that I am a bit of an espresso addict. I have my own home espresso machine complete with the proper type of grinder to go with it. (For those of you that don't know the grinder and coffee roast is one of the most important things in making espresso.) There is a local coffee roaster that has a few espresso bars in town that I get my coffee beans from. Its a great place but about a 15 minute drive away. While under treatments I have given up espresso for a wide variety of reasons. So of course what happens? The local coffee roaster just opened an espresso bar 2 minutes from my house. Just one of life's cruel little ironies. :-) Seriously I am OK with it and also know it will be one of the first places I visit when this is all done.

1st Week Report

Its been just one week since I started treatment. On the first day I had the chemo and radiation. Since then I have completed one week of the radiation treatment. The chemo hit me pretty hard the first day and has been causing some nausea. Yesterday I called the medical oncologist office and they switched me to a different drug called Zofran. (Actually the generic version)

One of the problems I have been having is getting enough calories. At first it wasn't bad but with the nausea and my taste starting to drop off it is becoming more of a challenge. I spoke with the nurse at the radiation oncologist office and the goal is to get at least 2,000 calories or more like 2,400. It is totally counter intuitive to what I have been used to. When I look at the frozen dinners at the store I look for the highest calorie count in the smallest package.

Its hard to describe what radiation treatment is like. Getting the treatment is no big deal. It takes 20 minutes or so. I am almost always in and out quickly and the people there are great. It seems that I am fine right after I get zapped but start to really fade about 5 - 6 hours afterwards and then need a few hours of down time. The next morning is when I seem to be the most productive. It appears that the body takes the biggest hit from the radiation late in the afternoon and then tries to start to recover from it overnight. Of course after each treatment the effects get progressively stronger.

Next week they are installing the PEG tube. I spoke to the radiation oncologist nurse and she was able to explain some of the details. Apparently there are two home health aide companies that they use locally and they are responsible for supplying feedings and help to support you with the tube. The nice thing is that they are on call 7x24 if needed and deliver to your house.

One thing we are doing is getting everything centralized on one floor. We just ordered a futon for my office and this will let me stay just on the first floor for the most part. It helps because the food, bathroom and just an area to wander around in if I am up at night is right there without going up and down stairs all the time and waking up everyone else in the house. I was crashing on the couch in the family room but long term that would be too disruptive to the kids. We had been thinking of getting a futon for the basement anyway so when this is done it will go down there.

Day 5: A better day

Its Sunday to I have two days off from treatment. I definitely feel better today and was able to get some work done. I am not as fatigued and for the most part I don't notice my stomach. Its hard to figure out how this week is going to play out. Last week we started with a bang on Wednesday with both the chemotherapy and the radiation. A definite double whammy and it was difficult to figure out what was causing what symptoms. My guess is the nausea and stomach feelings were from the Cisplatin. The swelling in the throat was clearly from the radiation. That has gone down in the last two days but next week I get 5 daily treatments in a row. My guess is that I will start to feel it on Monday and then build to Friday but I won't recover as much over the weekend as I did this last weekend. Fortunately I don't have another chemo for 2 and a half weeks. My next chemo is scheduled for the Tuesday before Thanksgiving. Its a bit of a bummer to have it then but at the same time it gives me some more down time to recover from it.

Tomorrow I have to push the GI specialist about getting the peg tube installed. I am not looking forward to it but it is going to be a critical part of keeping my healthy to fight the cancer cells. I did some research on why radiation causes fatigue. There doesn't seem to be a strong agreement but one opinion is that the metabolic activity required to repair the damaged cells causes part of the energy drain. Eating properly will go a long way to helping that. From what I have read a feeding tube is really more of a psychological issue than anything else. I am not sure I agree with that but they do over 200,000 of these a year in the country many times for cancer patients. I view this as a necessary condition in the battle. The problem is that it appears to be up to me to get it scheduled. I called the GI and tried to get with the scheduler twice but didn't get a call back. Tomorrow I will ask at the radiation oncologist office to see if they can get it going. They setup the original appointment. Ideally I would like to shoot for Thursday. It has advantages personally and its about the time when I won't be able to get much done anyway.

One other thing I am finding is that I need to stake out a good position to rest in. Lying down on the coach or the bed too much can cause poor sleep hygiene and isn't very useful. You lie there with your eyes closed but don't really sleep.

I probably won't continue posting every day. Just once or twice a week or when something significant happens like my next chemo.

Day 4: No treatements today

Yesterday was my third radiation treatment. I also got my first dose of the medicine to protect the saliva glands. Fortunately this medicine works each time you get it and lasts about 24 hours in your system. Each time you take it you get some protection for that treatment. If you miss a treatment it doesn't undo the protection from the previous treatments.

Yesterday I was able to get a feeling for what is meant by fatigue and not being able to sleep. Fortunately I was able to take some over the counter sleep medicine and that seemed to do the trick. You wouldn't think that you would need help sleeping when you are fatigued but in this case I did. One of the tricks to the treatment is going to be understanding when to do what. A friend of ours that went through cancer treatment a few years ago gave me some great advice, "Don't be a hero". Or to put another way better living through chemistry.

Today I am going to try to add some coffee or tea back into the equation. I have started drinking ginger tea as that helps with indigestion but unfortunately it doesn't have any caffeine. I did start to reduce my caffeine intake over the last few weeks but I still would like to work in that morning cup of something caffeinated. Its hard to tell how much of the fatigue feeling is caused by the treatments (Most I would think) and what could be helped by adding in some caffeine. I will probably start with Tea. Hopefully my espresso machine will understand. :-)

Day Two: More like what I expected

Day two is better than yesterday. According the the medical oncologist I shouldn't have shown much reaction until today. I guess my body was just itching to get to the fight sooner. Today is a better day. I am definitely fatigued and trying to take it easy but the nausea and pain went away and hasn't come back. Now I am what one Internet site referred to as "stomach aware". That means I can eat and drink without a problem but I am aware of my stomach if that makes any sense. Right now I am focusing on drinking water whenever I can. One of the big things with Cisplatin is to flush it from your system. They say I should drink a minimum of 64 ounces a day.

One plus of technology today is wireless access and remote connectivity. Fortunately my home network is more along the lines of a corporate one so I have been able to accomplish some actual work today. Its funny but now that I have started treatments and am on a regular schedule I feel a bit more calm. (Except for next week when I get the PEG tube installed! Yuck on that one.) Every morning I go for radiation treatment at 10:00. I should be back home by 11:00. That will let me get into a bit of a routine. I have also been stepping back from volunteer activities so that I can focus more time on keeping myself well, my family and work.

A Three Hurricane Evening

I got home yesterday somewhere around 1:30 in the afternoon. Keeping with the idea of small meals and drinking lots of water I had something to eat. At this point I was feeling fine but a bit tired. Around 3:00 I decided to take a nap. At 4:00 PM I woke up and that was when the fun started. It felt like I had been on a drinking binge without the benefit of drinking. Nausea, cold sweats, stomach cramps... the whole nine yards.

So I went downstairs and crashed on the couch. Sue tried to call the medical oncologist but could only get voice mail. Fortunately the nurses at the hospital gave me their number as well so she called there. They were able to get through and have the nurses from the oncologists office call. They said to take the drugs the radiation people had given me for nausea with the shots for protecting the saliva glands. That had some effect but no much. Sue called again but only got voice mail so she put a call into the doctors service. After about a half hour he called back and said he would call in a prescription to the local pharmacy. Of course that took even more time and in all it took about 3 hours to get the other prescription. Its some sort of steroid that helps the other medication. Between the two it seemed to get under control though I am still "stomach aware" as one web site put it.

The doctor was a bit surprised by the quick reaction to the Cisplatin. I guess normally this type of stuff doesn't turn up until the next day. Who knows, maybe that means it is working faster. So this morning I am off to another radiation treatment. Hopefully the effects of the Cisplatin will fade over the next two days.

So what is the hurricane reference about? I wanted to come up with a way to communicate how the side effects feel without getting into all the gory details so I devised the hurricane reference chart. A hurricane is a drink they serve in New Orleans that has about 4 shots of rum in it and a grain alcohol spritzer. In my youth a friend of mine and I at a sporting event consumed 4 of these. Needless to say we were not fit for much the next day. This wasn't has bad as that but it was up there.

The battle is joined: Operation Overlord Commences

OK, that might be a bit melodramatic but bonus points to anyone that knows what Operation Overlord means without looking it up.

So at 8:00 this morning I showed up at the hospital to check in. It took just a few minutes and they sent me back to the oncology area. The oncology room at the hospital is very nice. They got me situated in what is essentially a lounge chair. The first thing they did was give me the menu for breakfast and lunch. I had scrambled eggs and bacon with hot chocolate for breakfast.

But before breakfast came they had to put in the IV. (Have I mentioned that I have a needle phobia yet?) Anyway once that was in they hooked me up to a liter (I think) of saline. The key thing with the main chemo drug I am getting is that it can do nasty things to your kidneys (along with the many other side effects.) so to help mitigate you have to drink fluids, lots of fluids. Before they give you the main drug you have to urinate 500 ML. (Not all at once but total.) Fortunately I started drinking lots a few days before. Nothing starts until that quota is met. I brought my notebook with me and started watching the movie Rudy. The original plan was to watch the extended edition of the Lord Of The Rings for each of the three main treatments. With radiation scheduled for 10:00 I thought it would be a bit disruptive so Rudy made more sense.

Radiation called a bit early so off I went. Right before I then I hit the 500ml goal so when I came back the other drugs would start. Radiation went quickly. I walked right in, stowed my stuff in the locker and got bolted down to the table. They are doing 7 different angles with the radiation. Once they got me into position the machine moved down to the right and started there. From then on the table I was on would move a bit and the main unit would rotate a bit more towards the right. Then stop and shoot twice with the radiation. After that it would move to the next location. I didn't time it but I think it was somewhere around 20 minutes. Tomorrow I will pay more attention. Today they didn't give me the shots for the salivary glands. The thought was that I had enough going on without that as well.

Then it was back to the chemo unit to start the drugs. The first thing they put in was a anti nausea medicine. After that it was diuretic. I can attest that the diuretic works great. They also had me take the anti nausea medicine the medical oncologist prescribed. That took about an hour and then it was onto the big drug. So at around 11:25 or so they hooked up the Cisplatin. That took an hour to go in. While the Cisplatin was going in lunch came. I got the roast pork tenderloin with stuffing and gravy and tapioca for desert. To drink I had coffee and apple juice.

After the Cisplatin was done they flushed the IV with more saline, took the IV out and I was done. That's it. All together it took about 5 hours from check in and that included the radiation treatment.

At this point I have to say that the people in the oncology unit at the hospital were great. They took the time to explain what was going on and never seemed rushed at all. I also have to say that the people at the radiation facility are also great to deal with. Starting treatment is a bit stressful and having friendly patient medical professionals as part of the team goes a long way to easing any anxiety I may have had getting treatment.

Now its time to go home. (Yes, I was writing this while hooked up to the IV) They have done their job and its my turn to do my job. My job is eating lots of small meals, drinking at least 64 ounces of clear fluids a day and resting when I need it. Actually that sounds sort of like what I do now. :-)

I will post something the next day or two to let you know how things are going.

Dress Rehearsal

Today was the dry run through the radiation machine. Its actually pretty simple. I need to get there a few minutes before my appointment. When I get there I go back to a waiting area near the entrance to the room the machine is in. They have lockers there to put things in. Fortunately they are big enough to contain a laptop computer if I bring one.

When they take you into the room with the machine they put you on the table and position your shoulders under these braces. Then they put the mask on and attach that to the table. It takes a minute or two to get everything positioned and tightened up. After that they leave the room and operate the machine remotely. In my case because it is the head and neck area that is being targeted I don't need to change into a gown or anything. Also once the table is up in position it is the machine that will be moving around me to target the radiation beams. Once the machine is done the unhook me, lower the table and I am finished. All in its pretty straight forward.

For tomorrow because I am getting chemo therapy as well they will not use the drug that protects the saliva glands. That drug can also cause nausea and they don't want to hit me with too much at once.

For tomorrow I will check into the hospital at 8:00 in the morning. The first part of chemo is giving me fluids to hydrate me. The radiation treatment is scheduled for 10:00 AM so they will unhook me from the IV and bring me over to the radiation treatment area. Fortunately they are on the same floor and just a 1-2 minute walk away. After the radiation treatment its back to the chemo room. I did check out the chemo area at the hospital. Each station has a separate arm chair and appeared to be separated by a partial wall. I spoke to one person there and they said that they do have TVs as well. It appears to be a lot more convenient to have my chemo treatments there when I have radiation scheduled as well. I may ask if I can have the other two chemo treatments scheduled there while I am having radiation. The only reason I am there tomorrow is that the medical oncologist office is full up tomorrow.

Now all of the prep work is completed and tomorrow is when we start to attack the cancer. I am not looking forward to the treatments but I am glad to finally get going. The sooner I start the sooner I am done.

The battle plan is set

Right now is the calm before the storm. My last tests and appointments were on Wednesday. The treatments start in a week. Next Tuesday I have my test run with the machine. The way that works is they use the mask they made last week and attach me to the table. Then they take some x-rays with the mask on. I think that is used to help them align or calibrate the machine. Then they test the machine out to see that the treatment plan they created lines up with the positions on the mask or something like that. They don't actually use radiation during this dry run. Once treatment starts they take new x-ray images about once a week. Also half way through they will run me through the CT Scanner again and change the treatment plan based on the changes in tumor sizes.

The treatment plan starts on Wednesday. I get both the Chemo and radiation therapy that day. Because the chemo room at the medical oncologist is full up that day I will go to the hospital for my chemo. It actually works out better because the radiation facility is at the hospital. This makes it easier to coordinate the two. Right now my radiation treatment slot is 10:00 AM. I need to be there 15 minutes before hand to get the shots for the medicine to protect the salivary glands. The chemo appointment is for 8:00 AM. The chemo starts with fluids for a few hours before they give me the actual chemo drug. What will happen is I will start the chemo first. Then they will take me down to radiation when its time. After that I will head back up to the chemo room. By having the appointments overlap at the hospital it will take less time than going to one first and then to another office (1 minute away :-)). Also since the chemo I am having can last several hours (up to 6 I am told) they want me to bring food to eat. I think it is actually a requirement. Did I mention that nutrition and hydration is a big part of this? One bonus when you have chemo at the hospital is that they feed you. I will still bring stuff with me but those of you that know me know how much I love institutional food.

One thing I should note for those of you not from tiny town is that there are two advantages to having all of the facilities that I need for treatment locally. First is that it really only takes 20 minutes or less to get to hospital where the radiation treatment is. The chemo is in a building in front of the parking lot for the radiation oncologist. That is 20 minutes or less, with traffic, from the time I leave my kitchen to when I check in at the front desk. This leads me to the other advantage, parking. First parking is free. No worrying about finding a lot with space or paying for parking or parking in a garage. Also I generally park within 10 spaces of the door to the radiation treatment facility. All the advantages of the latest in treatment technology with the convenience of a small town. This is fortunate because if I had the cancer 3 years ago I would have ended up having to drive at least an hour for treatments plus add in the time to park in a garage and get in the building. BTW I added a link section with information on iMRT and the radiation treatment center at the Cayuga Medical Center. OK. Back to the main topic.

So Wednesday is the start. Here is the basic outline of the plan of attack. I will have 35 radiation treatments. These are 5 days a week for 7 weeks. Of course they are not open on Thanksgiving so I will make that one up at the end. Starting at the same time is the chemo therapy. This is broken down into 2 phases. Each phase has 3 treatments for a total of 6 treatments. All of the treatments are 3 weeks apart. The first 3 are the big ones. They take longer to administer and have stronger side effects. After those 3 there are 3 more with the same drug but a smaller dose. I think they said 75% of the main dose. It doesn't seem like much difference but according to the medical oncologist it makes a difference in the side effects. Along with these last 3 treatments is an infusion chemo of another drug. This is delivered via an IV pump in a pack over 5 days. The plus side is that the treatment at the doctors takes less time the downside is having an IV in at home for the next 4 days.

The treatment schedule is this. For 7 weeks I will have radiation treatment 5 days a week. At the same time I will have 6 chemo treatments over a span of 15 weeks. Fortunately the last 3 chemo treatments should have less side effects and I will be over the worst of the radiation treatments.

While I am definitely not looking forward to the treatments and realize it will be a rough ride at times I am glad that I am finally going to get started. Going through the treatments is unavoidable and the sooner I get started the sooner I come out the other side.

One more test and Chemo U

On Wednesday I had my last test (Yippeee!) and then my chemotherapy education or Chemo U as I call it. The last test I had to have was a PET scan. This scan is designed to see if the cancer has spread to anywhere else in my body. The way it works is you are injected with a radioactive sugar based substance and then sit still for 45 minutes. The fast growing cells absorb more of the radioactive substance than the slow growing cells. The reason for sitting still is to avoid having your muscles absorb more and throw off the scan. I couldn't even read the paper.

After the 45 minutes you are then put into the scanner. It looks something like a CT Scanner. It took around 40 minutes to complete the scan. This is one test that is not offered at a permanent facility in Ithaca. There is a mobile lab that comes to the hospital every Wednesday to do the tests. The substance they use has a half life of around 2 hours so it took about 12 hours for the radiation to completely disperse. During that time I truly had a radiant personality! (Yes, I know don't quit that day job.)

In the afternoon we went to the medical oncologist to meet with the nurse in charge of chemotherapy. This was an education session to let us know what is involved and how to prepare. The chemo schedule is 3 heavy duty sessions scheduled 3 weeks apart followed up by 3 lighter doses of the same drug and an infusion of another one. The 3 big treatments coincide with the radiation treatment plan. The drug they are using helps get any stray cancer cells but also makes the radiation more effective by causing the existing tumors to be more susceptible to radiation treatment. The downside is that this is one of the drugs that can really cause nausea. It only lasts for a day or two if it happens but it is a concern due to the other side effects of the drug. The drug can effect the kidneys. The way to combat this is drink lots of fluids, at least 64 ounces a day. During the chemo treatment they actually spend most of the time giving you fluids. Until you have a certain amount of output (you can figure that one out for yourself :-)) they won't give you the main drug.

This is where nausea becomes a problem. You really need to drink the fluids. To combat this they have prescribed a chewable drug that I bring with me on the day of chemo. I take the first one when I am there and they the other 2 on the following 2 days.

The way chemo works is that it attacks the fast growing cells like the cancer cells. Unfortunately your body also has some good fast growing cells. Things like hair and the production of blood cells. I think they mentioned something about the stomach as well but I am not sure. This particular chemo drug won't affect my hair so I can't blame my continual hair loss on this. It does effect the blood cells and that is a cumulative effect. What this means is that as the treatment goes on my white blood cell count will drop and I will become more susceptible to infection. Fortunately my job and life style in general will lend itself well to minimizing contact during that period. I will be seeing the radiation oncologist daily and the nurse there will be checking me out from time to time to see how things are going.

Back on the nausea front the nurse that did our chemo education provided some good information and even a cancer cookbook. One of the keys to fighting nausea from chemo is to not have an empty stomach. I found this interesting because my only experience with nausea has either been something I ate or from a bender in college. Then you want to avoid eating anything! Here the key is to graze as often as possible. One thing that I haven't mentioned is that between the radiation oncologist and the medical oncologist they are encouraging a diet that I would have otherwise never imagined a medical professional encouraging. All rules are thrown out the window. They want me to consume only whole milk products, no more skim milk during treatments, pack on the calories, eat lots of ice cream. Basically its anything goes. The idea is to eat whatever it takes to keep the calorie and protein content up and the fluid intake going. Now as the radiation treatment progresses and I get the mother of all sore throats some foods are just not going to work out like spicy foods or things with rough edges like tortilla chips. I did ask if they gave me a referral to a cardiologist when all of this is over.

Those were the last scheduled appointments until treatment starts next week. Its been 3 weeks exactly to the day since I first when in for what I thought was a sinus infection. For most of that time the schedule has really been changing day by day with more and more tests or consultations being scheduled. I think I have had just about every scan you can have at this point. There are a few days off until treatment starts next week and then I will finally be able to get into a regular routine. Its not that I am looking forward to the treatments, it will be a rough time, but it is something that has to be done and the sooner I start the sooner I am through it.