Ted Kennedy, the 3rd longest-serving senator in history, was diagnosed with a cancerous brain tumor in May, 2008 and underwent surgery and a grueling regimen of of radiation and chemotherapy. So by my calculations he survived 15 months after diagnosis. Cancer is no respector of people.
I met another colon cancer victim - (is that the right word? - what do you call us?) at the hospital yesterday. He is 42 years old. He had no idea he had it until it was too late and into stage 4. It has spread to his liver. He is messed up bad - just like I am. But you know what he said to me? He was grateful it hadn't spread to his brain. Wow. That set me back a little in my thinking. But what is this at age 42? How do you prevent this? Who would thing you should get colonoscopies starting at age 40?
So it brings one up short thinking about all this - survival. What a word. Enduring under adverse conditions is a dictionary definition that I'll go with. So I looked up cancer surviors on-line and found lots of web sites. Becoming a cancer survivor is the greatest challenge of my life. I'll try to do what I can. And trust the Lord for the rest.
My prayers go out to the Kennedy family and all others who have suffered from this horrible disease. My prayer is that God raises up scientists that can discover cures and preventions. What a field to go into. Are we challenging our youth in highschool to target becoming research scientists in this field? I hope so.
Stay tuned - Gary
Wednesday, August 26, 2009
Tuesday, August 25, 2009
Chemo Day Tuesday 8/25/09
This is one of those reflective days. I woke up strong. And tired of being a victim. I showed up at the hospital at 8:30 am to get the blood work done and finally got out around 2:30 pm. I got smart this time and took the naseau pill as soon as I got home. Other than my fingers feeling like needles I am doing ok so far.
Confound it all - the nurse called to say I didn't qualify for the fatigue study because that particular study is only for patients that are taking "curative treatment". So what I am I taking - obviously the "non-curative" treatment. Hmmpphh. Now I am really starting to get irritated. That's a good thing in my mind. If I am starting to get cranky about being a victim, tired of the talk about "can't be cured", and strong enough to get that attitude of "I'll show you, just get out of my way because here I come" going then I know I am getting better.
We finally figured out where we can get a brace for my foot. Leah was home this weekend and twice I stubbed my toes hard on the floor - ouch - that hurt - because the foot dropped and I forgot to pick it up. I doubt I wear it in the house but it sure would be nice to not have to take the cane on my walks. It makes me feel like an old man - and I don't like the way people look at me. Time to toughen up.
I sent Sandy on a hamburger run. For some reason a good old hamburger and fries sounds good tonight. With some of the Orange Crush Leah got for me. Hoorah - let's eat.
Stay tuned - Gary
Confound it all - the nurse called to say I didn't qualify for the fatigue study because that particular study is only for patients that are taking "curative treatment". So what I am I taking - obviously the "non-curative" treatment. Hmmpphh. Now I am really starting to get irritated. That's a good thing in my mind. If I am starting to get cranky about being a victim, tired of the talk about "can't be cured", and strong enough to get that attitude of "I'll show you, just get out of my way because here I come" going then I know I am getting better.
We finally figured out where we can get a brace for my foot. Leah was home this weekend and twice I stubbed my toes hard on the floor - ouch - that hurt - because the foot dropped and I forgot to pick it up. I doubt I wear it in the house but it sure would be nice to not have to take the cane on my walks. It makes me feel like an old man - and I don't like the way people look at me. Time to toughen up.
I sent Sandy on a hamburger run. For some reason a good old hamburger and fries sounds good tonight. With some of the Orange Crush Leah got for me. Hoorah - let's eat.
Stay tuned - Gary
Monday, August 24, 2009
Saturday Morning
I won't share the details but from the time I got up yesterday until the time I went to bed their were things going on with my body that were new and scary. Things I hadn't seen before. All night I worried about what today would bring. When I got up, I was afraid to start the normal morning routines. I didn't want to see and understand that things were worse.
Life is so fragile. Hope is so strong. As long as I had hope that I was getting better I was able to plan and look to the future. But with that gone I just crashed in my spirit. I don't want to die today. Or tomorrow. Or next week. I want to push it back, out of my mind, and laugh instead of cry.
Thank you Lord for one more day. Now the tears are tears of joy. Its time for coffee. And the paper. I'll wait for the sun to come up. And it will be good.
Shock Treatment: Friday, Aug. 21,2009
He said it wouldn't hurt. But by the time he figured out that the electrical signal from my right knee to my foot wasn't getting through (must be a short circuit I guess) he did the only thing he could do - crank up the amperage (volts or whatever was on the end of the dial) and shoot me with a good jolt of electricity. Ouch. That one got my attention. It got my leg's attention too because it started spasms on its own - jerking and flopping around like a fish out of water.
It was supposed to be simple - just a little neurological test with electricity and needles. So after the guy with the electricity got done shocking me (and the good leg too) he already knew there was a problem. Well, I knew their was a problem too. Then the doc came in with his long needle (it won't hurt....much....). And after the doc got done sticking the needle and humming and talking to himself and occasionally asking me if I was doing ok (sure - I sweat like this all the time doc) he agreed - there is a problem.
In laymen's terms the nerve that controls the foot ain't workin' from my knee down. And there is some minor damage to my good leg in the same areas. In a couple of weeks we find out the official diagnosis but for now we're sticking to the story that its a side effect of the chemo.
The good news is I was strong enough to be gone from the house for 11 hours today. And we ate out twice with family and friends (I highly recommend the double fried chicken with white gravy and mashed potatoes with white gravy at Cracker Barrel). What's it going to do - kill me? Ha!
We walked a couple of miles yesterday and I slept the night through. Great. Today I sat down on a friends couch in the afternoon and dropped right off to sleep. But don't we all want our afternoon naps?
So I am enjoying this non-chemo week watching the rain, making plans with my wife for the future (wow - I said it - we really are starting to make plans for the future so I must be feeling better).
Stay tuned - Gary
It was supposed to be simple - just a little neurological test with electricity and needles. So after the guy with the electricity got done shocking me (and the good leg too) he already knew there was a problem. Well, I knew their was a problem too. Then the doc came in with his long needle (it won't hurt....much....). And after the doc got done sticking the needle and humming and talking to himself and occasionally asking me if I was doing ok (sure - I sweat like this all the time doc) he agreed - there is a problem.
In laymen's terms the nerve that controls the foot ain't workin' from my knee down. And there is some minor damage to my good leg in the same areas. In a couple of weeks we find out the official diagnosis but for now we're sticking to the story that its a side effect of the chemo.
The good news is I was strong enough to be gone from the house for 11 hours today. And we ate out twice with family and friends (I highly recommend the double fried chicken with white gravy and mashed potatoes with white gravy at Cracker Barrel). What's it going to do - kill me? Ha!
We walked a couple of miles yesterday and I slept the night through. Great. Today I sat down on a friends couch in the afternoon and dropped right off to sleep. But don't we all want our afternoon naps?
So I am enjoying this non-chemo week watching the rain, making plans with my wife for the future (wow - I said it - we really are starting to make plans for the future so I must be feeling better).
Stay tuned - Gary
Tough Days: Sun, Aug 16, 2009
So, I wonder, do I really dare to write on the blog what its really like when I have a chemo week? We all want to hear the good news. But I am beginning to understand that when they hook me up like they did Tuesday for the chemo that its going to be a tough week. Day 2 is always the best because of the steroids. Day 3 when I get unhooked from the pump I am feeling pretty puny. And tired of being sensitive to the cold - no milk, cold potato salad or anything like that.
But then there is Day 4. Like yesterday. The fatigue sets in and I sleep then sleep some more. We had friends come and we went out for lunch. And then the fatigue sets in and I can't keep going. Its a drain on Sandy and friends (Sandy says I should not say this because its not a drain - but I worry that it is so I'll leave it in...). Then last night I escaped! Yup! I had a flash of desire for food at 9:30 pm last night. Sandy had gone to bed. And I got in the car and went to Dillons! Whohoo! But I forgot about the side effects of the chemo - and I reached my hand into the dairy case that had the hot dogs - big, plump hot dogs is what I wanted - and my fingers felt like they had been frozen with frostbite. Ouch. I grabbed the package and tossed it in the basket. Then made my way down to the buns. By the time I got to the check out counter I was wiped out and beginning to wonder if I could make it back.
And that's when I spotted it - outside - a pop machine. And at the bottom of the list was ORANGE pop for 35 cents! I dug out 50 cents and snagged me a cold pop and then OUCH! I couldn't hardly hold the can in my hand. I made it home and fixed my hot dog. Lots of mustard. And two whole swigs of pop. Ahhh - they call that living the good life don't they!
I wonder - do I ever tell anyone about the dark mornings? The depression that sets in because I can't move? And do? The exhaustion that keeps me glued in my seat while I sip coffee and stare out at the trees and birds? Sandy and I spent 2 hours this morning just sitting and talking. It was raining outside. And quiet inside. What a great time. I'm glad for the quietness sometimes.
I fell asleep again this morning after getting exhausted going out to Walmart. How can that be? A simple thing you would think - its not a marathon or anything like that. But I'll do what I can - and then sleep. And when I wake up - we'll hope its better. As my brother reminded me last night - when I am whipped with the chemo and its effects - that means its working. Gosh I hope so.....
Stay tuned - Gary
But then there is Day 4. Like yesterday. The fatigue sets in and I sleep then sleep some more. We had friends come and we went out for lunch. And then the fatigue sets in and I can't keep going. Its a drain on Sandy and friends (Sandy says I should not say this because its not a drain - but I worry that it is so I'll leave it in...). Then last night I escaped! Yup! I had a flash of desire for food at 9:30 pm last night. Sandy had gone to bed. And I got in the car and went to Dillons! Whohoo! But I forgot about the side effects of the chemo - and I reached my hand into the dairy case that had the hot dogs - big, plump hot dogs is what I wanted - and my fingers felt like they had been frozen with frostbite. Ouch. I grabbed the package and tossed it in the basket. Then made my way down to the buns. By the time I got to the check out counter I was wiped out and beginning to wonder if I could make it back.
And that's when I spotted it - outside - a pop machine. And at the bottom of the list was ORANGE pop for 35 cents! I dug out 50 cents and snagged me a cold pop and then OUCH! I couldn't hardly hold the can in my hand. I made it home and fixed my hot dog. Lots of mustard. And two whole swigs of pop. Ahhh - they call that living the good life don't they!
I wonder - do I ever tell anyone about the dark mornings? The depression that sets in because I can't move? And do? The exhaustion that keeps me glued in my seat while I sip coffee and stare out at the trees and birds? Sandy and I spent 2 hours this morning just sitting and talking. It was raining outside. And quiet inside. What a great time. I'm glad for the quietness sometimes.
I fell asleep again this morning after getting exhausted going out to Walmart. How can that be? A simple thing you would think - its not a marathon or anything like that. But I'll do what I can - and then sleep. And when I wake up - we'll hope its better. As my brother reminded me last night - when I am whipped with the chemo and its effects - that means its working. Gosh I hope so.....
Stay tuned - Gary
Praising the Lord: Tuesday, Aug. 11, 2009
I just finished my chemo session and it went well. There is lots of time to think while I sit there doing nothing except being the receiver of a chemical concoction (that I have found out is out of this world expensive). This time I got a little smarter - I took my IPOD and cranked up the worship tunes. A friend gave me CD of Alvin Slaughter's "God Can" album and wow! for those of you who are into praise music this CD is awesome.
We praise the Lord for life and each day we have. We received great news yesterday as we visited with the oncologist. The cancer marker (benchmark) dropped from 461 to 144. Now I don't claim to understand anything except this is great news per the Dr. I talked to the nurse today to try to get a layman's understanding and basically I think this reflects an enzyme count that is put out by the cancer cells. Healthy people who don't smoke should have less than 2.5. My Dr. isn't concerned about the bottom number - he was wanting to see that the number was dropping. That means the treatment is working!
Other reality facts that came up in the discussion (you know, reality is not an option but I prefer fantasy...denial...). For those have asked I am on a Folfox-6 plus Avastin treatment. Its working. I'll continue to see the Dr. every 4 weeks with chemo every 2 weeks. No surgery is scheduled - because for folks that have "too numerous to count cancer spots on the liver" such as I do surgery of the primary site is not considered to be a priority. The only reason surgery would be planned would be if the colon became constricted or I was passing blood. And I am suffering none of those symptoms at this time.
Life expectancy for those who have colon cancer that involves the liver like my case is 2 to 2 1/2 years. Some have made it 5 years. Others of course don't make it 2 years. But the good news is the science of colon cancer continues to evolve at a rapid pace. Of course, we trust the Lord and all the prayers for complete healing.
Now I have some things to do to help the healing along. The Dr. wants me to exercise more - even on the days I have the pump attached to me at home. So Sandy and I will "hit the dusty trail" more now and get the walking routine increased.
We discussed optional opinions and treatments at MD Anderson (Dallas) and National Cancer Institute (Bethseda). Mayo was also discussed. None of those are really an option until I quit responding to the current treatment. And as I understand it at some point (8 months to 1 1/2 years) my body will begin to resist the current treatment and we'll have to switch to a different program.
You see - what I have is "treatable" but not "curable". Hmmm,,,,,that brings a guy up short. It makes me think all kinds of things: selfish bucket list items, grief for failures to accomplish certain dreams, determination to launch a successful new business venture, spiritual goals and people goals. I don't claim to have it all sorted out - because it seems that daily life (financial affairs, health management, family and church activities) is consuming all my energy.
Speaking of energy - I have been asked to join a clinical trial on fatigue. To steal Sarah Palin's colloquialism my response is "YOU BETCHA' ". Sign me up. The fatigue factor is a real drain. I'll think of something I want to do and 1/2 hour later I am still sitting in the chair waiting for the old body to get the message that its time to get moving! So this clinical trail has something to do with ginseng. Nuts, I'll probably get the placebo....
My Dr. recommended the following sites: http://www.uptodate.com/patients/index.html and http://www.cancercenterofkansas.com/
So stay tuned while we figure this out. We have good days and bad days. But the Dr. says I'll be much stronger is 3-4 months. And he said I was much stronger this time (we all realize I was one sick puppy the last time I saw him - that rascally colon cancer sneaked up on me and just about had me on the ropes).
Gary
We praise the Lord for life and each day we have. We received great news yesterday as we visited with the oncologist. The cancer marker (benchmark) dropped from 461 to 144. Now I don't claim to understand anything except this is great news per the Dr. I talked to the nurse today to try to get a layman's understanding and basically I think this reflects an enzyme count that is put out by the cancer cells. Healthy people who don't smoke should have less than 2.5. My Dr. isn't concerned about the bottom number - he was wanting to see that the number was dropping. That means the treatment is working!
Other reality facts that came up in the discussion (you know, reality is not an option but I prefer fantasy...denial...). For those have asked I am on a Folfox-6 plus Avastin treatment. Its working. I'll continue to see the Dr. every 4 weeks with chemo every 2 weeks. No surgery is scheduled - because for folks that have "too numerous to count cancer spots on the liver" such as I do surgery of the primary site is not considered to be a priority. The only reason surgery would be planned would be if the colon became constricted or I was passing blood. And I am suffering none of those symptoms at this time.
Life expectancy for those who have colon cancer that involves the liver like my case is 2 to 2 1/2 years. Some have made it 5 years. Others of course don't make it 2 years. But the good news is the science of colon cancer continues to evolve at a rapid pace. Of course, we trust the Lord and all the prayers for complete healing.
Now I have some things to do to help the healing along. The Dr. wants me to exercise more - even on the days I have the pump attached to me at home. So Sandy and I will "hit the dusty trail" more now and get the walking routine increased.
We discussed optional opinions and treatments at MD Anderson (Dallas) and National Cancer Institute (Bethseda). Mayo was also discussed. None of those are really an option until I quit responding to the current treatment. And as I understand it at some point (8 months to 1 1/2 years) my body will begin to resist the current treatment and we'll have to switch to a different program.
You see - what I have is "treatable" but not "curable". Hmmm,,,,,that brings a guy up short. It makes me think all kinds of things: selfish bucket list items, grief for failures to accomplish certain dreams, determination to launch a successful new business venture, spiritual goals and people goals. I don't claim to have it all sorted out - because it seems that daily life (financial affairs, health management, family and church activities) is consuming all my energy.
Speaking of energy - I have been asked to join a clinical trial on fatigue. To steal Sarah Palin's colloquialism my response is "YOU BETCHA' ". Sign me up. The fatigue factor is a real drain. I'll think of something I want to do and 1/2 hour later I am still sitting in the chair waiting for the old body to get the message that its time to get moving! So this clinical trail has something to do with ginseng. Nuts, I'll probably get the placebo....
My Dr. recommended the following sites: http://www.uptodate.com/patients/index.html and http://www.cancercenterofkansas.com/
So stay tuned while we figure this out. We have good days and bad days. But the Dr. says I'll be much stronger is 3-4 months. And he said I was much stronger this time (we all realize I was one sick puppy the last time I saw him - that rascally colon cancer sneaked up on me and just about had me on the ropes).
Gary
Update: Mon, Aug. 10, 2009
Well, its been 2 weeks since the last chemo treatment. We now know how to identify the side effects - 'chemo brain', sleeping like a baby a the drop of a hat, feeling like your living in a fog. There are some 'good days' (relatively speaking) and then there are the other times when its not so good.
Monday we see the oncologist for the first time since the chemo started. We have some 'fear' because we have lots of questions now after a month of the chemo. What's really going on? Am I getting better or worse? Or are we in a holding pattern? What about life expectancy? I have some choices to make that are going to be customized to the answer to that question. What about quality of life? I feel like a shriveled up prune.
Oh - and now I have to contend with a right foot that just quit working properly after the chemo started. What's up with that? It droops - evidently there is some nerve damage - and if I don't watch it closely I'll do a face plant on the floor. Actually - I did one tonight when we had company. Not cool. But nothings broke.
We've had lots of company - and that is so neat. We enjoy people and visiting is always fun.
So stay tuned - I'll try to get the blog updated after we get some answers tomorrow. I expect I'll have another round of chemo starting Tuesday and you all know by now what that means - I'll be out of commission for awhile. Thanks for all the emails - if I don't get back to you right away its not because I don't want to - I just don't seem to be able to 'drive' like I used to.
Gary
Monday we see the oncologist for the first time since the chemo started. We have some 'fear' because we have lots of questions now after a month of the chemo. What's really going on? Am I getting better or worse? Or are we in a holding pattern? What about life expectancy? I have some choices to make that are going to be customized to the answer to that question. What about quality of life? I feel like a shriveled up prune.
Oh - and now I have to contend with a right foot that just quit working properly after the chemo started. What's up with that? It droops - evidently there is some nerve damage - and if I don't watch it closely I'll do a face plant on the floor. Actually - I did one tonight when we had company. Not cool. But nothings broke.
We've had lots of company - and that is so neat. We enjoy people and visiting is always fun.
So stay tuned - I'll try to get the blog updated after we get some answers tomorrow. I expect I'll have another round of chemo starting Tuesday and you all know by now what that means - I'll be out of commission for awhile. Thanks for all the emails - if I don't get back to you right away its not because I don't want to - I just don't seem to be able to 'drive' like I used to.
Gary
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