When is it time to write a new blog entry? I never know. All the news has been so negative that I don't want to keep sending these doom and gloom forecasts yet I know that people want to stay in the loop. So I'm sorry if I am not hitting that happy medium for you.
When is it time to tell you all about progress reports? That too, has been harder lately because they all are negative. Had my PET scan a couple weeks ago I was severely taken aback by the tumor growth they reported. The lungs looked good but the bones not good at all. Many new lesions and substantial growth of the existing ones. Reading the report was sobering and scary for me so passing it on is sobering as well. I hope you can understand that.
When is it time to restart the Nexavar? NOW! Actually 10 days ago. The good news is that I have been on Nexavar for 10 days now and have no serious side effects. Some nausea, hiccups, (drive ya nuts hiccups!), and fatigue but so far no bad skin or stomach problems. Hooray for the good news!
When is it time to make changes to my medications? Because of the steady increases in pain I knew I was in trouble. Lately my left hip is excruciating. I have very few positions I can sit, stand, or lie in without having at least some pain and most of the time I'm in the upper eschelon of the pain scale. If you have been to an ER you have been asked to name the level of your pain on a 1-10 scale. I would say my hip fluctuated from a 7 to a 9. (Think of a 10 as being the same as slamming your hand in a car door) Now that is about as serious constant pain as I've ever had! I described it as hell. OWWWWWW! Obviously I needed to do something immediately about the hip. So what do we do? Load me up with a half- dozen patches. These little babies are a transdermal product, in other words they stick to your skin and constantly transmit pain medicine through the surface of the patch. No good, at least not good enough here. The docs inform me we have reached a point with the patches where we are not doing any good adding more. Evidently there is a breaking point and we have hit it. (Forgot to tell you I've been on these for several month and slowly increasing the amount)
When is it time to try new methods? NOW! I have already tried a short course of steroids which helped tremendously, the hip pain was almost gone completely. BUT (there's always a damn "but", isn't there?) there is a good chance that the steroids will reduce the effectiveness of the Nexavar. I guess you can't have your cake and eat it too, or maybe I should say you can't have your steroids and a cure for cancer too. There is no way that I want to reduce the effectiveness of any of my medications. So now we are working on different plans. The first one is to try some different pain relievers, we may find one that is effective enough to block the pain but not the effectiveness of the Nexavar. I'm in the middle of a medication switch right now that hopefully will help, I will let you know. I also am going for a full assessment by the orthopaedic surgeon who did my back surgery last year. He wants to try to pinpoint where the hip problem is and then maybe he can help from there. Originally he talked of doing a MRI but there is no way I can lay in that tube for more than a couple minutes. Let's pray for good results from the assessment.
When is it time to end this posting? You alreay know - now. There it is, many, many days of trials and tribulations broken down into a a few short paragraphs. Some of you may ask "if you have many more days to write about why don't you do it?" The answer is simple - This is a stressful thing to go through. Jessica and I live this as our life each and every day, 24 hours a day. I love and very much appreciate the fact that you are concerned with how I am doing and for that reason I do these updates. But,like everyone, we do like a little time to ourselves and I think I owe it to my wife and myself to spend at least some time in a disease-free zone. So that is where I am leaving this tonight - disease free!
As always my friends, be kind to your friends and neighbors, be loving to your family and pets but most of all
Be Well & Be Blessed!
Wednesday, July 7, 2010
Tuesday, June 15, 2010
Schedule Update
Hi Folks,
Happy tax estimate day! All the self-employed people just groaned.
This will be quick - I just want to give you an update on what's happening. I finished my radiation 2 weeks ago and had no detrimental side effects other a little shortness of breath. I definitely think I have maxed out the radiation on my lungs but of course new stuff always happens.
Tomorrow I have a PET scan which will be the baseline scan before I restart Nexavar. I will meet with my oncologist next week to review the results and hopefully then I will get the go ahead for the pills. Finally after 7 months I can see light at the end of the tunnel!
How are you feeling? That's the question I get the most and of course it's the most logical of questions for a guy who is sick all the time, right? So I'll answer it for you all here in one place. I know I usually tell people "pretty good" or "not bad" but the honest truth is pretty darn lousy lately. It's a combination of things that I can't seem to control - lots of stomach issues, fatigue, hip and back pain, sweats, chills, yadda yadda. The frustrating part is that I never know how I am going to feel until I get up that day. That makes it hard to plan on doing anything, especially since I've had many more down days than up days. So all in all the the last few weeks have not been much fun (I guess I should say less fun than usual since fun is generally in short supply lately) and I'm really hoping that I can find the right combination of meds that will keep me feeling more consistent. Starting Nexavar will complicate things further but a man's got to do what a man's got to do! Sorry if I sound a little whiney here but the truth is the truth and Mom & Dad taught us that it's a sin to lie.
That is all for this update - short & sweet. I'll be back to you with more news as soon as I have anything to share. I'm really hoping I can share something positive with you next time.
As always - thanks for checking in on me. Luv to you all!
Be well - Be Blessed!
Happy tax estimate day! All the self-employed people just groaned.
This will be quick - I just want to give you an update on what's happening. I finished my radiation 2 weeks ago and had no detrimental side effects other a little shortness of breath. I definitely think I have maxed out the radiation on my lungs but of course new stuff always happens.
Tomorrow I have a PET scan which will be the baseline scan before I restart Nexavar. I will meet with my oncologist next week to review the results and hopefully then I will get the go ahead for the pills. Finally after 7 months I can see light at the end of the tunnel!
How are you feeling? That's the question I get the most and of course it's the most logical of questions for a guy who is sick all the time, right? So I'll answer it for you all here in one place. I know I usually tell people "pretty good" or "not bad" but the honest truth is pretty darn lousy lately. It's a combination of things that I can't seem to control - lots of stomach issues, fatigue, hip and back pain, sweats, chills, yadda yadda. The frustrating part is that I never know how I am going to feel until I get up that day. That makes it hard to plan on doing anything, especially since I've had many more down days than up days. So all in all the the last few weeks have not been much fun (I guess I should say less fun than usual since fun is generally in short supply lately) and I'm really hoping that I can find the right combination of meds that will keep me feeling more consistent. Starting Nexavar will complicate things further but a man's got to do what a man's got to do! Sorry if I sound a little whiney here but the truth is the truth and Mom & Dad taught us that it's a sin to lie.
That is all for this update - short & sweet. I'll be back to you with more news as soon as I have anything to share. I'm really hoping I can share something positive with you next time.
As always - thanks for checking in on me. Luv to you all!
Be well - Be Blessed!
Sunday, May 23, 2010
More Radiation? Again?
Wow - it's been over 2 weeks since my last post. I'm sure you are sick of me apologizing and then not changing my ways but honestly I am trying and will continue to try.
So let me bring you up to date on all that has happened since last post. I was in the hospital when I wrote you, in the middle of brachytherapy. The following morning, which was a Friday, I had my 3rd and final treatment. The treatments themselves were very quick, only a few minutes. I was hooked up to a machine which fed a wire through the plastic catheter (remember - the one hanging out of my nose) until it was in the precise location of the tumor. Then radiation was applied through the wire while it moved a few millimeters at a time. Once done, the machine pulled the wire back out of the catheter. Kind of spooky having a machine with no one operating it shoving a wire in and out of my nose but the treatments all went well. After the last one the doc removed the catheter by grabbing hold and pulling it out. A couple seconds of discomfort but much easier than the surgery required to install it.
But the real bomb was dropped on me after the catheter was out; that's when the doc informed me that he now wanted to do a course of standard external radiation. Wait a minute here! Didn't we do the brachytherapy because I have already received the maximum amount of external radiation to this area? That is when I got an extended explanation (in halting English with a heavy Chinese accent) about how I have an area of tumor in the same bronchial tube that was hidden by the original tumor on the scans and he just discovered it by using a camera through the bronchoscope during the installation of my catheter. He said he had a small window to work with through which he could give me external radiation. Great! Now I have another procedure that will put my starting Nexavar back an additional month. After answering a few more of my questions he handed me a slip of paper with my first appointment on it, scheduled for 2 weeks later. I said thanks but I really need to think about this a little. But then something really good happened on that Friday - I was out of the hospital well before 10am! A minor miracle happened!
Since the brachytherapy I have coughed up zero blood which tells me that this was the right thing to do. Finally - I was past this hurdle. I had an appointment with my oncologist last week. I have probably explained this before but my oncologist is really the quarterback of my treatments, he directs what needs to be done and I rely on him to answer my questions and help me make decisions about my care. So we spent considerable time talking about whether or not to go ahead with this radiation. I hate it when they say "the decision is yours" but that is ultimately what he said. My point is that we have been trying for months to get me back on Nexavar and we were finally at a point where it made some sense to do that because the drug should shrink the tumor just like radiation should. He said that was a valid point and he would not argue if that is what I decided BUT that my tumors have shown to be very radio-responsive (that means that radiation works very well on them) and that the more conservative approach would be to do the radiation first because it would have a more permanent effect than Nexavar would. So I reluctantly decided on doing the radiation first. The good news is that I will only need 8 treatments, the bad news is that I need to wait at least 2 weeks after the last treatment before starting my drug therapy. I had my first treatment last Thursday and will have my last one June 1st, so that means I am looking at about mid-June for starting Nexavar, almost 7 months after stopping it last November. Let's keep our fingers crossed that nothing else pops up between now and then!
Had enough of all this medical talk? Me too - let's move on to the fun stuff I've been doing. Actually not a whole lot. But I did get to go to the Milwaukee Public Museum to see their display on the Dead Sea Scrolls, a very interesting exhibit! These are ancient scrolls, dating from about 100 BC to 100 AD, that were discovered in caves near the Dead Sea about 1947. Most of these scrolls had deteriorated to fragments so translating and interpreting them has been a major project. The best way I have of describing these scrolls is they were a precursor to the Bible, describing the events of that time period as well as earlier times. If you have an interest in this portion of history and have opportunity to see this exhibit, I would recommend it. The Milwaukee display closes June 6th so move fast if you want to see it here!
Side note - even our calendar has become politically correct. BC has now become BCE and AD becomes CE. So instead of "Before Christ" we have "Before the Common Era" and instead of "Anno Domini" (the year of Our Lord) we have the "Common Era". So even though we all follow a calendar designed by a Christian (Pope Gregory) we now have to remove any reference to religion from these designations. Sometimes I really hate people! I don't know which people I'm hating now - but I'm sure I can track them down.
So now that I have raised my blood pressure I better cut this posting off. Thanks for staying with me - I'll be back to you sooner next time. I promise!
Be Well - Be Blessed!
So let me bring you up to date on all that has happened since last post. I was in the hospital when I wrote you, in the middle of brachytherapy. The following morning, which was a Friday, I had my 3rd and final treatment. The treatments themselves were very quick, only a few minutes. I was hooked up to a machine which fed a wire through the plastic catheter (remember - the one hanging out of my nose) until it was in the precise location of the tumor. Then radiation was applied through the wire while it moved a few millimeters at a time. Once done, the machine pulled the wire back out of the catheter. Kind of spooky having a machine with no one operating it shoving a wire in and out of my nose but the treatments all went well. After the last one the doc removed the catheter by grabbing hold and pulling it out. A couple seconds of discomfort but much easier than the surgery required to install it.
But the real bomb was dropped on me after the catheter was out; that's when the doc informed me that he now wanted to do a course of standard external radiation. Wait a minute here! Didn't we do the brachytherapy because I have already received the maximum amount of external radiation to this area? That is when I got an extended explanation (in halting English with a heavy Chinese accent) about how I have an area of tumor in the same bronchial tube that was hidden by the original tumor on the scans and he just discovered it by using a camera through the bronchoscope during the installation of my catheter. He said he had a small window to work with through which he could give me external radiation. Great! Now I have another procedure that will put my starting Nexavar back an additional month. After answering a few more of my questions he handed me a slip of paper with my first appointment on it, scheduled for 2 weeks later. I said thanks but I really need to think about this a little. But then something really good happened on that Friday - I was out of the hospital well before 10am! A minor miracle happened!
Since the brachytherapy I have coughed up zero blood which tells me that this was the right thing to do. Finally - I was past this hurdle. I had an appointment with my oncologist last week. I have probably explained this before but my oncologist is really the quarterback of my treatments, he directs what needs to be done and I rely on him to answer my questions and help me make decisions about my care. So we spent considerable time talking about whether or not to go ahead with this radiation. I hate it when they say "the decision is yours" but that is ultimately what he said. My point is that we have been trying for months to get me back on Nexavar and we were finally at a point where it made some sense to do that because the drug should shrink the tumor just like radiation should. He said that was a valid point and he would not argue if that is what I decided BUT that my tumors have shown to be very radio-responsive (that means that radiation works very well on them) and that the more conservative approach would be to do the radiation first because it would have a more permanent effect than Nexavar would. So I reluctantly decided on doing the radiation first. The good news is that I will only need 8 treatments, the bad news is that I need to wait at least 2 weeks after the last treatment before starting my drug therapy. I had my first treatment last Thursday and will have my last one June 1st, so that means I am looking at about mid-June for starting Nexavar, almost 7 months after stopping it last November. Let's keep our fingers crossed that nothing else pops up between now and then!
Had enough of all this medical talk? Me too - let's move on to the fun stuff I've been doing. Actually not a whole lot. But I did get to go to the Milwaukee Public Museum to see their display on the Dead Sea Scrolls, a very interesting exhibit! These are ancient scrolls, dating from about 100 BC to 100 AD, that were discovered in caves near the Dead Sea about 1947. Most of these scrolls had deteriorated to fragments so translating and interpreting them has been a major project. The best way I have of describing these scrolls is they were a precursor to the Bible, describing the events of that time period as well as earlier times. If you have an interest in this portion of history and have opportunity to see this exhibit, I would recommend it. The Milwaukee display closes June 6th so move fast if you want to see it here!
Side note - even our calendar has become politically correct. BC has now become BCE and AD becomes CE. So instead of "Before Christ" we have "Before the Common Era" and instead of "Anno Domini" (the year of Our Lord) we have the "Common Era". So even though we all follow a calendar designed by a Christian (Pope Gregory) we now have to remove any reference to religion from these designations. Sometimes I really hate people! I don't know which people I'm hating now - but I'm sure I can track them down.
So now that I have raised my blood pressure I better cut this posting off. Thanks for staying with me - I'll be back to you sooner next time. I promise!
Be Well - Be Blessed!
Thursday, May 6, 2010
Another Comfortable Stay
Hi y'all,
Today was brachytherapy part 1 and things went pretty much as planned. I was in surgery by 7:30 where they got the catheter placed, I had 2 treatments today and now am waiting for my 3rd and final treatment tomorrow morning.
Today was brachytherapy part 1 and things went pretty much as planned. I was in surgery by 7:30 where they got the catheter placed, I had 2 treatments today and now am waiting for my 3rd and final treatment tomorrow morning.
As I sit in bed right now I have about two feet of plastic tube hanging out of my nose which they have wrapped around my face and taped down. I am quite a sight to behold! If I was still single I'm sure the ladies would be lining up to meet me. Yeah ...... sure. More important than how I look is how I feel, which is best described as uncomfortable. This thing hanging out of my nose is stiff and pulls which makes it a little painful. But I only have to live with it overnight so I can deal with it.
I'm being fed right now. I kind of like the setup here, it's similar to an IV pump where they hang a container of food, run the line through the pump and attach it to my feeding tube. Then I just wait for it to pump in the required amount, I don't have to hold on to anything so I have both hands free to type out this blog entry for you! Pretty handy but I don't think I will buy a pump for home. They are slower than just using good old gravity but here in the hospital I don't have to rush to get anything done.
The plan is for me to get my final treatment tomorrow at 8:00 am and then hopefully be released quickly so I can head home. Thanks for checking in on me - I'll be back in touch as soon as I can.
Be Well - Be Blessed!
Wednesday, May 5, 2010
Back to my 2nd Home
Hi there!
I concluded my last post 2 weeks ago by telling you I thought the next 2 weeks would be uneventful and I was pretty much correct. My birthday was in there on the 30th of April so there was a little bit of excitement for the weekend. No cake for me but I got a candle in a cupcake with ice cream that I watched my wife eat! No, she wasn't torturing me, she was just making sure that I didn't miss out on the traditional birthday songs. I say songs because in our house we have the birthday song that everyone knows plus we enjoy the McManus birthday song that my sister-in-law Terry brought to us when she married my brother Jerry. Some no-fun people hear it and say "oh, that's awful" so I will not share the lyrics here but you can email me privately and I will send them to you. It's much more fun than the other one - start a new tradition in your home! Anyway I had visitors every day over the weekend, our good friends and former neighbors from North Prairie Chris & Lori stopped with their daughter Caitlyn on Friday night, (congratulations on the new job Chris!), brother Jerry came over Saturday night while our wives went art crawling (we had the better deal - we watched Tora, Tora, Tora!) and finally Pete came over Sunday night. So I got to extend my birthday over 3 days! Thanks to all of you who remembered me! I had a couple requests to throw another party like last year but sorry, that was a once in a lifetime event. If you missed it I feel sorry for you, just ask anyone who was there.
The only other excitement for me during the last 2 weeks was a few trips to the hospital. I have been dealing with a lot of stomach pain & digestion issues and have been working with the doc and nurses trying to get that straightened out. I'm sure no one wants to hear the details of my bathroom issues so I'll just say it is a process and we are working through it. I did get a new g-tube (feeding tube) installed last week, as I learned it is supposed to be replaced every 3 months. Mine had been in over 4 but I always take good care to keep it clean so no harm done, but I set an appointment for 3 months to get it changed again so I don't forget. My shingles have been clearing up nicely, they are almost all gone. As I said before, they never really bothered me in terms of pain like a lot people suffer from. But I am glad they are gone so I can move on with my other treatments.
Which brings us to tomorrow. I have to be at the hospital at the ungodly hour of 5:30 am to start on my brachytherapy. The full description of what I am getting is High Dose Rate Endobronchial Brachytherapy. Instead of me trying to describe how it works you can click here and get a much better description than I could give of how the process works. The only additional part for me is they will first do a bronchoscopy to provide a path for the catheter. I will be getting 2 treatments on Thursday and 1 more on Friday morning, so hopefully I'll be released by mid-day Friday. I'll try to get an update posted as soon as possible but I am not sure when that will be. I don't know how active I can be in between treatments, but I'll get something up by the weekend anyway.
One last thought - don't forget that this Sunday is Mother's Day! All you sons and daughters work hard to make Mom's day special for her! She deserves it! And as my Mom told me when I was younger - "Remember, I brought you into this world, I can take you out!" I think she was just kidding. I think......
Be Well - Be Blessed!
I concluded my last post 2 weeks ago by telling you I thought the next 2 weeks would be uneventful and I was pretty much correct. My birthday was in there on the 30th of April so there was a little bit of excitement for the weekend. No cake for me but I got a candle in a cupcake with ice cream that I watched my wife eat! No, she wasn't torturing me, she was just making sure that I didn't miss out on the traditional birthday songs. I say songs because in our house we have the birthday song that everyone knows plus we enjoy the McManus birthday song that my sister-in-law Terry brought to us when she married my brother Jerry. Some no-fun people hear it and say "oh, that's awful" so I will not share the lyrics here but you can email me privately and I will send them to you. It's much more fun than the other one - start a new tradition in your home! Anyway I had visitors every day over the weekend, our good friends and former neighbors from North Prairie Chris & Lori stopped with their daughter Caitlyn on Friday night, (congratulations on the new job Chris!), brother Jerry came over Saturday night while our wives went art crawling (we had the better deal - we watched Tora, Tora, Tora!) and finally Pete came over Sunday night. So I got to extend my birthday over 3 days! Thanks to all of you who remembered me! I had a couple requests to throw another party like last year but sorry, that was a once in a lifetime event. If you missed it I feel sorry for you, just ask anyone who was there.
The only other excitement for me during the last 2 weeks was a few trips to the hospital. I have been dealing with a lot of stomach pain & digestion issues and have been working with the doc and nurses trying to get that straightened out. I'm sure no one wants to hear the details of my bathroom issues so I'll just say it is a process and we are working through it. I did get a new g-tube (feeding tube) installed last week, as I learned it is supposed to be replaced every 3 months. Mine had been in over 4 but I always take good care to keep it clean so no harm done, but I set an appointment for 3 months to get it changed again so I don't forget. My shingles have been clearing up nicely, they are almost all gone. As I said before, they never really bothered me in terms of pain like a lot people suffer from. But I am glad they are gone so I can move on with my other treatments.
Which brings us to tomorrow. I have to be at the hospital at the ungodly hour of 5:30 am to start on my brachytherapy. The full description of what I am getting is High Dose Rate Endobronchial Brachytherapy. Instead of me trying to describe how it works you can click here and get a much better description than I could give of how the process works. The only additional part for me is they will first do a bronchoscopy to provide a path for the catheter. I will be getting 2 treatments on Thursday and 1 more on Friday morning, so hopefully I'll be released by mid-day Friday. I'll try to get an update posted as soon as possible but I am not sure when that will be. I don't know how active I can be in between treatments, but I'll get something up by the weekend anyway.
One last thought - don't forget that this Sunday is Mother's Day! All you sons and daughters work hard to make Mom's day special for her! She deserves it! And as my Mom told me when I was younger - "Remember, I brought you into this world, I can take you out!" I think she was just kidding. I think......
Be Well - Be Blessed!
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