Wow - you're hearing from me again so quickly! I'm glad to be doing a better job keeping you in the loop, but I will warn you that this posting is nowhere near as fun as the last one. I am going to bore you with technical health news. If you are interested only in the “bottom line” skip down to the last paragraph.
Today (Tuesday) I had my appointment with Dr Wong, my oncologist, to review the results of my scans from last week. I have told you before that I have several tumors already established in my spine, most of them in the thoracic (middle) and lumbar (lower) sections. The MRI showed a few of these had increased in size, a few had not significantly changed, and I have at least 2 new ones. Exactly which of these is causing my current back pain is still unknown and Dr Wong wants to get some more opinions from a Radiation Oncologist and a back surgeon. At this point we are looking at 3 options. The first is do nothing and try to control the pain with medication, the second is to use radiation to shrink the tumor(s), the third is another back surgery. My preferred option is radiation but I may not be eligible for it because I have already had radiation treatments to that area of my back. Evidently there is a maximum amount of radiation “juice” they can shoot you with so they have to determine if I have hit my max and also get an opinion on how successful this would be at relieving the pain.
This latest MRI was compared to the last one I had in April. This timing is important to keep in mind because I started on Nexavar in June. That means that there were 2 months where I was not on a systemic drug and any changes in the lesions could have occurred during that 2 month time span. So we have no way of knowing if the Nexavar is doing its job on the spinal tumors. But since we know it is helping the tumors in the soft tissue we are going to assume that it is working on the bone tumors as well.
I also had CT scans of the neck, chest, and abdomen. These scans I get every 60 days while on Nexavar and they are used to track the progress of disease. (These are the ones that showed the shrinking tumors back at the beginning of August) These most recent CT’s showed very little change from the ones 60 days ago. I view that as good news – stable is much better than progression!
Just a side note - Has anyone ever read a report from a CT Scan or MRI? These are the reports that the Radiologists write up after examining the scan films. I have been asking for these reports and reading them for the last couple years and I still have to read them next to a computer with internet access. I read a sentence, Google a few words, read a sentence, Google a few words, etc, etc. After about 15 minutes I can get through the half dozen paragraphs and understand about ¾ of it! I guess I should have taken biology in high school instead of that extra year of physics. If I only knew……
Anyway – enough technical talk. The bottom line is this: most of the tumors are stable but I have growth in some areas of the spine. These areas are causing significant pain and a little more homework is being done to find out the best way to relieve that pain. It may be a week or so before I have that information, I’ll let you know when I have it.
Hey - Thanks again for caring enough to read this junk!
Be Well - Be Blessed!
Wednesday, September 30, 2009
Monday, September 28, 2009
Unexpected Visitors
Hi y'all,
I thought I would share some pictures of visitors we have had at our home the last few days. These are Sandhill Cranes that seem to think they have found a new home. We have seen cranes before in our backyard and in the soybean field behind our yard but now we are seeing them up close. We heard some rapping at the door of our basement walkout, it turned out to be these birds. We are guessing that they are probably pecking at their reflection in the windows. It was very suprising to see these 3 "big birds" standing on our patio. There are 2 males and 1 female who have been hanging around for several days. Our assumption is that they like the soybeans as well as the apples and hawthorne berries that we have in our yard. They are pretty skittish and move away quickly when they detect motion in the house, so getting good pics has been a challenge. You can check out more pictures here http://picasaweb.google.com/iyamken/Cranes These visitors are welcome to stay as long as they want!
Be Well - Be Blessed!
Sunday, September 27, 2009
Lots O' Tests
Hey Friends!
This week I had a couple full days of tests in preparation for my doc appointment next week. My back pain has not eased at all and they want to find the source. Last post I told you about the MRI that the doc wanted of my full spine. I finally had that test on Thursday and it was just as bad as I expected, I was in the MRI tube for 3 hours! I will say that the nurse they had helping me with pain and sedation did a great job helping me get through it. She made a big difference! The Thursday MRI was followed by lab tests and CT scans on Friday, so when I see the doc on Tuesday they should certainly have enough views of my insides to work with. I'll let you know what I learn, I certainly need to find some relief from this back pain. I'm sucking down pain meds like they are candy, which gives me other problems like drowsiness.
What else have I been up to? Well I have been in search of a new hobby since golf seems to be out of the question for a while. I think I may have found something in RC (Radio Control) aircraft. I have purchased an airplane and a helicopter so far. My neighbor Paul is really into this hobby and has been helping me out with flight lessons and advice. I'm lucky to have a large backyard and a farmer’s field behind that so I have room to fly without leaving the yard. Getting the technique down has been tougher than I thought, I have a lot more learning to do. Fortunately these aircraft are relatively easy to repair because I have proven to be a crash specialist. Last week I parked the plane in a tree (in my defense it was pretty windy) and yesterday I did the same thing with the helicopter. Paul was gracious enough to fix the plane and I glued the copter back together. Just like the automotive business there is a big market for replacement and aftermarket parts. I went gaga in a hobby store the other day looking at all the goodies. I'll keep you up to date on what I learn as I go along here. If you are interested in seeing someone who knows what they are doing Paul posts a lot of videos on You Tube that you can check out. Look for postings by pdiddy21154.
I am facing another challenge that is proving to be tough - I am working hard to keep weight on. (ok all you ladies can stop rolling your eyes and wishing you were me). Most of my adult life I have been overweight to the tune of 20-50 lbs. Not today! I'm weighing in at about 170 (that's 77 kg for my European fans.). Jessica is working hard to keep me eating and make the most out what I eat. She now buys her food and my food. I get whole milk instead of skim, full-fat cottage cheese & yogurt, etc. We met with a dietician at the hospital who gave us a lot of tips and ideas on adding calories and protein to my diet. I need to eat about 6 times a day instead of 3 and keep adding calories wherever I can. What a switch from how I have looked at things up until now!
Thanks for looking in on me - I'll be back to you sometime next week!
Be Well - Be Blessed
This week I had a couple full days of tests in preparation for my doc appointment next week. My back pain has not eased at all and they want to find the source. Last post I told you about the MRI that the doc wanted of my full spine. I finally had that test on Thursday and it was just as bad as I expected, I was in the MRI tube for 3 hours! I will say that the nurse they had helping me with pain and sedation did a great job helping me get through it. She made a big difference! The Thursday MRI was followed by lab tests and CT scans on Friday, so when I see the doc on Tuesday they should certainly have enough views of my insides to work with. I'll let you know what I learn, I certainly need to find some relief from this back pain. I'm sucking down pain meds like they are candy, which gives me other problems like drowsiness.
What else have I been up to? Well I have been in search of a new hobby since golf seems to be out of the question for a while. I think I may have found something in RC (Radio Control) aircraft. I have purchased an airplane and a helicopter so far. My neighbor Paul is really into this hobby and has been helping me out with flight lessons and advice. I'm lucky to have a large backyard and a farmer’s field behind that so I have room to fly without leaving the yard. Getting the technique down has been tougher than I thought, I have a lot more learning to do. Fortunately these aircraft are relatively easy to repair because I have proven to be a crash specialist. Last week I parked the plane in a tree (in my defense it was pretty windy) and yesterday I did the same thing with the helicopter. Paul was gracious enough to fix the plane and I glued the copter back together. Just like the automotive business there is a big market for replacement and aftermarket parts. I went gaga in a hobby store the other day looking at all the goodies. I'll keep you up to date on what I learn as I go along here. If you are interested in seeing someone who knows what they are doing Paul posts a lot of videos on You Tube that you can check out. Look for postings by pdiddy21154.
I am facing another challenge that is proving to be tough - I am working hard to keep weight on. (ok all you ladies can stop rolling your eyes and wishing you were me). Most of my adult life I have been overweight to the tune of 20-50 lbs. Not today! I'm weighing in at about 170 (that's 77 kg for my European fans.). Jessica is working hard to keep me eating and make the most out what I eat. She now buys her food and my food. I get whole milk instead of skim, full-fat cottage cheese & yogurt, etc. We met with a dietician at the hospital who gave us a lot of tips and ideas on adding calories and protein to my diet. I need to eat about 6 times a day instead of 3 and keep adding calories wherever I can. What a switch from how I have looked at things up until now!
Thanks for looking in on me - I'll be back to you sometime next week!
Be Well - Be Blessed
Tuesday, September 8, 2009
Looking for the older posts?
After many unsuccessful attempts to import my old blog postings into this program I have temporarily given up! But I have set them up in another location. If you want to read any of the older posts you can see them at the following location. http://iyamken.wordpress.com/
The old posts start in summer of when I went to MD Anderson Cancer Center in Houston and continue through June of this year. I'll keep trying to integrate everything together at another time.
Thanks!
The old posts start in summer of when I went to MD Anderson Cancer Center in Houston and continue through June of this year. I'll keep trying to integrate everything together at another time.
Thanks!
A Month's Worth of News
Wow - a whole month has gone by. I'm setting a new record in rudeness. I will tell you that I have been busy, some good busy and some not-so- good busy.
In the last posting I promised you more good news and I have got a couple things for you. First up is that my back surgeon is extremely pleased with the way my back has healed. He gave me permission to wean myself off of the back brace and I have been doing just that. I still wear it when I go out most times since I would rather err on the side of caution. After the long recovery I don't want to have to do it again. More about the back later. The other good thing is that I had another checkup in the LONG time since the last post and my Thyroglobulin level has dropped another 10%. Thyroglobulin is the level they use as a marker of tumor activity. It should be zero but it has dropped from 181 in March to 66 in August. We're headed in the right direction!
Now that I shared the good news there is some tougher stuff to share.
First is recurring back pain. The repair in my lumbar area feels great but now I have pretty consistent intense pain in an area just at the bottom of the shoulder blades. After discussing it with the doc He decided he wants a MRI of my spine. I HATE MRI's. This one should be especially interesting since I cannot lay on my back without pain.
Their suggestion, as always, is "increase your pain meds". They will do what they call a sedated MRI where I am put in a semi-sleepy state. I can hardly wait but it has to be done.
How did you spend your Labor Day? Maybe a cookout with brats, beer, and corn on the cob? Or did you go to the Harley party? Mine was different. I woke up at 7am and took my Nexavar pills. I had trouble swallowing them and they both got stuck in my throat. Could not flush them down with water or food and could not cough them up. I have had similar issues in the past and just waited until the pills dissolved. These pills never did - at noon I still could not move them and could not swallow water- I just choked and spit it back up. (meaning I could not take my other meds) So we went off to the urgent care clinic, hoping they had some secret to dislodging the pills. No such luck. Next stop - ER. After an unsuccessful attempt with a drug to make my throat more slippery they had to call in a GI specialist who knocked me out and went down my throat with an endoscope to dislodge the pills. They were finally cleared at about 5pm. Today I have a very sore throat and am only able to take in liquids. It might be another day or two before my throat heals enough to eat solid food. What a great holiday.
Enough bad stuff - let's finish up with one more piece of good news.
And for this I owe my niece Tracy. Little bitty baby Tracy Pelt got married Saturday! It was a great event and I'm so happy I was feeling well enough to attend. I actually danced with Jessica - OK, it was more like waddling through a couple of slow songs but I know she appreciated the effort! Tracy, like her sister Cyndee, has matured into a terrific young lady. She and Casey, the new hubby, are living and working in Washington DC. You will be glad to know that a portion of your tax dollars go to pay Casey's wages. I'm always happy to learn my excessive taxes are helping someone I know. I wish Casey and Tracy a long, healthy, happy, and blessed marriage.
Thank you sincerely for your patience in waiting for news. I know I have been poor at keeping you informed, at least I've been late in doing so. Your prayers, notes, cards, emails, and most importantly your friendship mean the world to me.
Be Well - Be Blessed
In the last posting I promised you more good news and I have got a couple things for you. First up is that my back surgeon is extremely pleased with the way my back has healed. He gave me permission to wean myself off of the back brace and I have been doing just that. I still wear it when I go out most times since I would rather err on the side of caution. After the long recovery I don't want to have to do it again. More about the back later. The other good thing is that I had another checkup in the LONG time since the last post and my Thyroglobulin level has dropped another 10%. Thyroglobulin is the level they use as a marker of tumor activity. It should be zero but it has dropped from 181 in March to 66 in August. We're headed in the right direction!
Now that I shared the good news there is some tougher stuff to share.
First is recurring back pain. The repair in my lumbar area feels great but now I have pretty consistent intense pain in an area just at the bottom of the shoulder blades. After discussing it with the doc He decided he wants a MRI of my spine. I HATE MRI's. This one should be especially interesting since I cannot lay on my back without pain.
Their suggestion, as always, is "increase your pain meds". They will do what they call a sedated MRI where I am put in a semi-sleepy state. I can hardly wait but it has to be done.
How did you spend your Labor Day? Maybe a cookout with brats, beer, and corn on the cob? Or did you go to the Harley party? Mine was different. I woke up at 7am and took my Nexavar pills. I had trouble swallowing them and they both got stuck in my throat. Could not flush them down with water or food and could not cough them up. I have had similar issues in the past and just waited until the pills dissolved. These pills never did - at noon I still could not move them and could not swallow water- I just choked and spit it back up. (meaning I could not take my other meds) So we went off to the urgent care clinic, hoping they had some secret to dislodging the pills. No such luck. Next stop - ER. After an unsuccessful attempt with a drug to make my throat more slippery they had to call in a GI specialist who knocked me out and went down my throat with an endoscope to dislodge the pills. They were finally cleared at about 5pm. Today I have a very sore throat and am only able to take in liquids. It might be another day or two before my throat heals enough to eat solid food. What a great holiday.
Enough bad stuff - let's finish up with one more piece of good news.
And for this I owe my niece Tracy. Little bitty baby Tracy Pelt got married Saturday! It was a great event and I'm so happy I was feeling well enough to attend. I actually danced with Jessica - OK, it was more like waddling through a couple of slow songs but I know she appreciated the effort! Tracy, like her sister Cyndee, has matured into a terrific young lady. She and Casey, the new hubby, are living and working in Washington DC. You will be glad to know that a portion of your tax dollars go to pay Casey's wages. I'm always happy to learn my excessive taxes are helping someone I know. I wish Casey and Tracy a long, healthy, happy, and blessed marriage.
Thank you sincerely for your patience in waiting for news. I know I have been poor at keeping you informed, at least I've been late in doing so. Your prayers, notes, cards, emails, and most importantly your friendship mean the world to me.
Be Well - Be Blessed
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