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!


  1. I hate this disease ... all the best to you.

  2. I'm so sorry you are hurting and the doc's havn't found the right med mix. Hang in there Ken. You are a fighter. Best to you both. She

  3. It just breaks my heart to hear all this stuff happening to you. As Sheila said, Hang in there you are tough, you will always be in my thoughts, good luck to you and Jess. Hugs!!!!

  4. Ken, You have been such a strong example to many people. Dan always commented on how you keep fighting this Damn disease and never give up.He didn't have the same out look or drive to constantly subject himself to the pain and trial meds like you do.
    I sometimes read his journal, just to try and understand the mental aspect of living as you do and he did. It is baffling. God is there beside you Ken, holding you, know that and try to be assured that HE will ease your pain. I love you and pray daily for you and Jess, As I know what she is dealing with. Hugs, BB