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.
Saturday, December 29, 2007
Friday, December 28, 2007
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. :-))
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. :-))
Wednesday, December 26, 2007
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.
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.
Sunday, December 23, 2007
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.
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.
Subscribe to:
Comments (Atom)