Hi, this is Jessica, Ken's wife.
I am still so sad when I have to say, "Ken passed away on November 6th., 2010". Family and friends know this, of course. But, I wanted to write a final page in the blog for anyone else who was following it and wondered why it just stopped.
Ken and I were at home when he died. He would want you to know that he did not suffer and he was where he wanted to be for the end.
I would like to thank every one of you for following Ken's blog. It meant so much to him that you read it and wanted to know how he was doing. Although Ken's attitude and spirit was almost always good, the blog was one of the things that helped him get through some of the tough times.
Also, an extra "Thank You" to everybody at ThyCa (Thyroid Cancer Survivors Association, Inc.) for their support and friendship. It was a priceless gift.
Ken and I always had hope that he would get better.
It wasn't meant to be. We had faith, too.
And now, that faith is what helps me live each day without him.
I miss you Sweetie!! XOX
Be Well - Be Blessed
Wednesday, October 5, 2011
Wednesday, November 3, 2010
Hi-Tech eating
Hi Friends,
Here we are, another month or so gone by since my last posting and I have a couple new things to report. First off elections are done - Whether your side won or lost it's a definite "Yay" just from the point of no more robo calls all day long. Maybe you don't get them when you work all day but if you are home sick it seemed like they were coming in constantly.
On the health side of things I am now feeding myself with a pump. Instead of a drip feed where we rely on gravity and guesstimates to determine the amount of food I am getting the pump can be programmed to give me a precise number of cc's of food over a certain amount of time. The advantage to this is that I am no longer guessing at how much or how fast I am eating, I can be more precise in my food intake. I should have gone to this long ago but stubborn old me didn't think it was neccessary but I was wrong - what a difference! Now I know exactly how much food I have eaten and can control how much more I want to to eat. Unfortunately the insurance company does not pay for the pump rental (which is highly stupid!) but so far I have found it worth every penny we pay out. Now it is a matter of me establishing some baselines and then building up from there. Less guesswork - I like that! With any luck in a month or so I should be reporting higher caloric intakes and still less illness. That's the plan anyway!
So I'm keeping today's update short and sweet. Please issue prayers for hopes that the pump helps me to find my way forward when it comes to my eating expostion. You have all been a tremendous help to me and i hate to keep asking for more help but isn't that what friends are for?
Thank you from the bottom of my heart and blessings to all of you.
BE WELL - BE BLESSED
Ken
Here we are, another month or so gone by since my last posting and I have a couple new things to report. First off elections are done - Whether your side won or lost it's a definite "Yay" just from the point of no more robo calls all day long. Maybe you don't get them when you work all day but if you are home sick it seemed like they were coming in constantly.
On the health side of things I am now feeding myself with a pump. Instead of a drip feed where we rely on gravity and guesstimates to determine the amount of food I am getting the pump can be programmed to give me a precise number of cc's of food over a certain amount of time. The advantage to this is that I am no longer guessing at how much or how fast I am eating, I can be more precise in my food intake. I should have gone to this long ago but stubborn old me didn't think it was neccessary but I was wrong - what a difference! Now I know exactly how much food I have eaten and can control how much more I want to to eat. Unfortunately the insurance company does not pay for the pump rental (which is highly stupid!) but so far I have found it worth every penny we pay out. Now it is a matter of me establishing some baselines and then building up from there. Less guesswork - I like that! With any luck in a month or so I should be reporting higher caloric intakes and still less illness. That's the plan anyway!
So I'm keeping today's update short and sweet. Please issue prayers for hopes that the pump helps me to find my way forward when it comes to my eating expostion. You have all been a tremendous help to me and i hate to keep asking for more help but isn't that what friends are for?
Thank you from the bottom of my heart and blessings to all of you.
BE WELL - BE BLESSED
Ken
Tuesday, October 12, 2010
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
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
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!
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