Hi Friends,
Yes, it certainly has been a long time since you heard from me. I won't offer any apologies, just suffice it to say it has been a rough couple months. The last time we talked I told you I was still struggling with the nausea issue. Well guess what? I still am. If my hair wasn't thinning horribly already I'd be ripping it out in frustration. I have been kind of a cranky guy lately and not a lot of fun to be around.
I want to say thanks for the notes, cards, calls, and other contacts that you guys have sent over the past couple months. It's nice to know that even when I have been out of touch you are still thinking of me and praying for me. So a giant THANK YOU is well deserved.
Over the last several weeks I have tried different foods, different ways of "eating", and different medications to make myself more comfortable but unfortunately have not hit upon the magic potion that helps me tolerate the feedings easily. I wish I could tell you here that I have had some big breakthrough but the truth is we are still floundering. I did meet with the docs again today and there are more tricks up their sleeves yet. It's too soon to tell any details of what we plan to try but suffice it to say we haven't given up. This has been one long, winding, frustrating road we have been on. We've been dealing with this since Spring! Occasionally we find a drug that helps with the nausea but then proves to have other non-desirable side effects like sleep issues or making my formerly sharp brain foggy. So we keep trying and we will continue to do so. I appreciate all the support you guys send my way!
On the non-medical side of life I don't have a lot to report on either. I've been keeping a low profile since I never know when I'll get sick after eating. If I do get sick it usually washes me out for the rest of the day which makes for a lousy day. One big thing is that Jessica and I cancelled our trip to the ThyCa Conference in Dallas this weekend. I just am in no condition to tolerate 2 days of travel and 3 days of seminars, meetings, and dinners. It was a hard decision as we have made some great friends the last couple years at this event but there is no point in being sick 1200 miles from home when you can be sick in your own bed. The good part is we didn't lose any money on the cancellations, just some airline points which I am overstocked on right now anyway.
So in summary I just want to again say thank you for the support you give to Jessica and I. I will attempt to post more frequently, especially if we can find some good news in this latest pile of changes we are going to attempt. God Bless you all
Be Well - Be Blessed!
Ken
Tuesday, October 12, 2010
Sunday, August 15, 2010
A Fairly Good Week
Hey Friends!
It's been a busy week - I spent time away from home and away from the doctor's office, hard to believe I know. It started Tuesday with a day at work. Actually only about 4 hours spent at the store helping out with a project but it seemed like a full day.
Now on to the reason for the title to this blog posting - Jessie and I had a great invitation this week from our friends Jerry and Anna. Jerry offered to push my formerly-fat-rear-end around the State Fair in a wheelchair for a day. What a tremendous offer! So Friday we met them in the handicap parking area and got to tour some of the fair. Unfortunately the weather wasn't the most cooperative-it was in the 90's with similar humidity so we spent a large chunk of time in the air conditioned buildings studying the ginsu knives and cookware offered by eager vendors. No sales here though! So a special thank you to Jerry & Anna - I never would have gone to the fair without you!
Another exciting event this week was Jessie's family reunion on Saturday. The maternal side of her family does an a good job holding an annual reunion in Waupaca. However I admit even after 30 odd years of attending this event I forget more names than I retain. And how many more kids get added every year? It's just too much to keep track of. Anyway, we enjoyed catching up with the people I do remember and talk to more than once a year. It was relaxing because we drove up Saturday (another stinky hot & humid day), stayed overnight, and drove back today.
As far as the health update portion of this blog post it's been so-so. Definitely still better than last month but I've been struggling with a few episodes of nausea again. I still don't have a handle on why it happens or what triggers it but I've started keeping notes on what I feed myself, the amount, and the speed. I'm hoping to discern some pattern soon.
Thanks for checking n on me again - I really appreciate your support. Thank you for the prayers and love sent my way.
Be Well - Be Blessed!
It's been a busy week - I spent time away from home and away from the doctor's office, hard to believe I know. It started Tuesday with a day at work. Actually only about 4 hours spent at the store helping out with a project but it seemed like a full day.
Now on to the reason for the title to this blog posting - Jessie and I had a great invitation this week from our friends Jerry and Anna. Jerry offered to push my formerly-fat-rear-end around the State Fair in a wheelchair for a day. What a tremendous offer! So Friday we met them in the handicap parking area and got to tour some of the fair. Unfortunately the weather wasn't the most cooperative-it was in the 90's with similar humidity so we spent a large chunk of time in the air conditioned buildings studying the ginsu knives and cookware offered by eager vendors. No sales here though! So a special thank you to Jerry & Anna - I never would have gone to the fair without you!
Another exciting event this week was Jessie's family reunion on Saturday. The maternal side of her family does an a good job holding an annual reunion in Waupaca. However I admit even after 30 odd years of attending this event I forget more names than I retain. And how many more kids get added every year? It's just too much to keep track of. Anyway, we enjoyed catching up with the people I do remember and talk to more than once a year. It was relaxing because we drove up Saturday (another stinky hot & humid day), stayed overnight, and drove back today.
As far as the health update portion of this blog post it's been so-so. Definitely still better than last month but I've been struggling with a few episodes of nausea again. I still don't have a handle on why it happens or what triggers it but I've started keeping notes on what I feed myself, the amount, and the speed. I'm hoping to discern some pattern soon.
Thanks for checking n on me again - I really appreciate your support. Thank you for the prayers and love sent my way.
Be Well - Be Blessed!
Tuesday, August 3, 2010
Finally Some Progress!
Hey friends!
I finally have some good news to report! I bet you were getting really tired of listening to me whine all the time, but I now can tell you that my stomach feels MUCH better than it has in at least a month. So what happened? I'll tell you that it took a logical approach by me that finally got us on the right track. I told you last time that I had several appointments last week and hoped for better results. At the first appointment I could tell no one had any new ideas so I said "How about we go back to the medicine routine I was on before all this started?". They said that was not a good idea because I had such severe hip pain before the changes were made. I said you are right but we made several changes at once and we have been guessing which one or which combination is causing the stomach issues. Let's go back and make changes one at a time and see what happens. I'm willing to risk pain for a while as long as I know it's only for the short term. They looked at me like I was some kind of idiot but I got everyone to agree. And guess what? It worked great! I am back on the patches (and only half as many as before) for long term relief and liquid oxycodone for relief from breakthrough pain and I couldn't be happier with the results. Very little hip pain and a much more contented stomach. Sometimes you have to look past the experts and apply a little logic in order to get where you want to be!
Another thing that helps is I've changed the way I feed myself. Instead of manually pouring my formula into my feeding tube I am using a drip bag. It's kind of like an IV setup where I put the formula in the bag, hang it up, and then let it drip into my tube. Doing it this way means I can control the speed much easier. Feeding slower means less issues as well. Plus there is the added benefit of having my hands free so I can work on the computer or read while I "eat". It works great!
So it has been over a week since I made these changes. They said it would take a full week for all the old meds to be flushed out of my system and that would be the real test if the new protocol is working. Well it definitely is! I plan to continue this until something changes that forces me to change. But so far so good!
I am still on the Nexavar, that has been about 6 weeks now. At the end of this month I will have scans and lab tests to see if the drug is having any effect on my tumors. I am speculating that the Nexavar may be helping to reduce the pain by shrinking my hip tumors. It's only a guess but we will find out in about a month. Anybody want to make a wager on it?
So I'm glad you got to read some good news for a change. It's much easier to write these posts when I'm not feeling like death warmed over so here's hoping more posts like this one are on the way.
Be Well - Be Blessed!
I finally have some good news to report! I bet you were getting really tired of listening to me whine all the time, but I now can tell you that my stomach feels MUCH better than it has in at least a month. So what happened? I'll tell you that it took a logical approach by me that finally got us on the right track. I told you last time that I had several appointments last week and hoped for better results. At the first appointment I could tell no one had any new ideas so I said "How about we go back to the medicine routine I was on before all this started?". They said that was not a good idea because I had such severe hip pain before the changes were made. I said you are right but we made several changes at once and we have been guessing which one or which combination is causing the stomach issues. Let's go back and make changes one at a time and see what happens. I'm willing to risk pain for a while as long as I know it's only for the short term. They looked at me like I was some kind of idiot but I got everyone to agree. And guess what? It worked great! I am back on the patches (and only half as many as before) for long term relief and liquid oxycodone for relief from breakthrough pain and I couldn't be happier with the results. Very little hip pain and a much more contented stomach. Sometimes you have to look past the experts and apply a little logic in order to get where you want to be!
Another thing that helps is I've changed the way I feed myself. Instead of manually pouring my formula into my feeding tube I am using a drip bag. It's kind of like an IV setup where I put the formula in the bag, hang it up, and then let it drip into my tube. Doing it this way means I can control the speed much easier. Feeding slower means less issues as well. Plus there is the added benefit of having my hands free so I can work on the computer or read while I "eat". It works great!
So it has been over a week since I made these changes. They said it would take a full week for all the old meds to be flushed out of my system and that would be the real test if the new protocol is working. Well it definitely is! I plan to continue this until something changes that forces me to change. But so far so good!
I am still on the Nexavar, that has been about 6 weeks now. At the end of this month I will have scans and lab tests to see if the drug is having any effect on my tumors. I am speculating that the Nexavar may be helping to reduce the pain by shrinking my hip tumors. It's only a guess but we will find out in about a month. Anybody want to make a wager on it?
So I'm glad you got to read some good news for a change. It's much easier to write these posts when I'm not feeling like death warmed over so here's hoping more posts like this one are on the way.
Be Well - Be Blessed!
Friday, July 23, 2010
The more things change...
Well friends the more things change the more they stay the same.
The last couple of weeks have been a whirlwind of new meds, new feeding procedures, and new schedules. But for everything we've tried it seems my stomach feels the same. The same nausea, the same constipation, the same bloating and gas. Ok - that's probably more info than you wanted but it's what has been making my life hell lately. I know everyone goes through periods of stomach issues, whether from something we ate or from a bug or virus of some sort. But this seems never ending and I'm getting really sick of being sick. I've been to the doc a few times and have tried many new things but so far no help. I guess the only thing to do is keep trying to tweak medicines and food to see if I can hit upon something that works. Next week I meet with several docs for my monthly checkups so I may have more news after that.
Thanks for checking in on me, not much to report these days.
Be Well - Be Blessed!
Wednesday, July 7, 2010
When is it time?
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!
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!
Subscribe to:
Posts (Atom)
