History and stories tell us of families that have been stricken with tragedy. The Kennedy family has definitely had their share of bad news. However, it is not my intention to hold our family up and try to "one-up" other families that have experienced tragedy in their lives because everybody has their own stories of pain and suffering that are very real for them. But it seems that after coasting through my life for close to 40 years with very little activity in the tragedy column, my family has decided to rectify that little fact in a big hurry. It started with my cancer diagnosis last February and is followed with a bang this year with the recent revelation that my father has been diagnosed with Chronic Lymphocytic Leukemia. Guess he got tired of me hogging all the attention in the family.
So we again walk down this path of unanswered questions, anger, and fear.
Saturday, January 22, 2011
Monday, January 17, 2011
My Other Me Raises Its Ugly Face Again
Well it happened again. I had a pretty rough week this past week. I won't go into too much detail because I really don't think most of you want to hear the about the inner workings of my gastro-intestinal system. Let's just leave it at that I felt like crap for pretty much the whole week and that lying on any horizontal surface was my favored position and way of passing the time.
I didn't have any chemo, but it kind of felt like that week after a round. And like those weeks following chemo, I didn't have much going on upstairs. I couldn't eat, read, work, interact with my family. I was just basically living. Television was my only source of comfort this past week and it seems being able to stare at it mindlessly was the extent of my contribution to family and society.
But, again just like so many times before, it amazes me what happens when I snap out of these dark periods. As my wife just stated this morning, "he's alive!" (making a reference to the Frankenstein character). That is how stark the contrast is between the two me's. One is basically a lump of biological goo lying on a horizontal surface completely dependent upon those around me, and the other is a functioning, independent thinking and living organism.
So how do the two me's come about?
It isn't the physical ability to, for example, clean the kitchen that is missing during these these dark spells. Sure, even when I feel physically very ill, I am capable of doing certain fundamental physical tasks. They may not be easy and it may take a little longer to complete them but I can get them done. What surprises me the most when I go through one of these valleys is the part of myself that I lose. The desire, the spirit, the will, the drive, the want to, the reason for caring. This part of me just seems to take a vacation.
Then one day the clouds part and just like that it reappears again. Suddenly I care about things again. It amazes me the unmitigated contrast between the two me's. Then again, having gone through this multiple times before, it amazes me that it continues to amaze me that this happens to me. You would think that by now I would be an old veteran of this circus and would be able to understand what is happening to me as I am going through it. Or maybe that is how real and how deeply it affects me. That even in the middle of something that I have gone through before, I have to experience it as if it were the first time. That even though I have seen the movie before I don't know how it ends.
What scares me about this alternate me is that in light of what I am going through, this lack of desire can also materialize into a lack of caring about my outcome and future and that can have disastrous consequences. I cannot afford to give up the will to live. In spite of everything that is going on with me physically, I have to maintain the mental fortitude to fight this fight.
So I will celebrate the sun rising in my world and do my best to equip myself for that next low. Because I now know that it will come, but I must remind myself that it will also pass.
I didn't have any chemo, but it kind of felt like that week after a round. And like those weeks following chemo, I didn't have much going on upstairs. I couldn't eat, read, work, interact with my family. I was just basically living. Television was my only source of comfort this past week and it seems being able to stare at it mindlessly was the extent of my contribution to family and society.
But, again just like so many times before, it amazes me what happens when I snap out of these dark periods. As my wife just stated this morning, "he's alive!" (making a reference to the Frankenstein character). That is how stark the contrast is between the two me's. One is basically a lump of biological goo lying on a horizontal surface completely dependent upon those around me, and the other is a functioning, independent thinking and living organism.
So how do the two me's come about?
It isn't the physical ability to, for example, clean the kitchen that is missing during these these dark spells. Sure, even when I feel physically very ill, I am capable of doing certain fundamental physical tasks. They may not be easy and it may take a little longer to complete them but I can get them done. What surprises me the most when I go through one of these valleys is the part of myself that I lose. The desire, the spirit, the will, the drive, the want to, the reason for caring. This part of me just seems to take a vacation.
Then one day the clouds part and just like that it reappears again. Suddenly I care about things again. It amazes me the unmitigated contrast between the two me's. Then again, having gone through this multiple times before, it amazes me that it continues to amaze me that this happens to me. You would think that by now I would be an old veteran of this circus and would be able to understand what is happening to me as I am going through it. Or maybe that is how real and how deeply it affects me. That even in the middle of something that I have gone through before, I have to experience it as if it were the first time. That even though I have seen the movie before I don't know how it ends.
What scares me about this alternate me is that in light of what I am going through, this lack of desire can also materialize into a lack of caring about my outcome and future and that can have disastrous consequences. I cannot afford to give up the will to live. In spite of everything that is going on with me physically, I have to maintain the mental fortitude to fight this fight.
So I will celebrate the sun rising in my world and do my best to equip myself for that next low. Because I now know that it will come, but I must remind myself that it will also pass.
Sunday, January 9, 2011
Update
Spent Tuesday night through Friday noon down at MD Anderson again. Here is the scoop on the latest info.
Had more scans done. That headache that I have been having turned out to be nothing more than that. Head and neck scan showed all clear. That is a big victory. Didn't want the noma spreading to my brain.
Scan of chest showed the primary tumor did grow, but only a tiny bit. Probably in the neighborhood of 2mm. Not much at all and pretty impressive since my last round of chemo was in July. The size of that primary tumor is still about 50% less than when they first discovered it. The other little bit of good info on that was that the growth occurred away from the lungs and sensitive organs. The smaller secondary tumor next to it stayed the same size. So while you don't like to hear the word growth, overall my body seems to be doing pretty well on slowing the progression of the tumor.
Update on the clinical trial that I mentioned in an earlier blog: still waiting to hear if I get accepted, but my doc told me not to hold my breath. The odds on me getting in are very small. He did want to start me on this other phase 1 clinical trial. I don't have much info on this trial other than I go back down in two weeks and if my white blood count is high enough, I could start right then and there. It is very early in the trial for this drug and basically how it works is that I will try it and get tested right away. If it holds the tumor size or decreases it then I keep going on it. If I have bad side effects or the tumor starts to grow then I stop the drug. Not real complicated. The nice thing is that it is a pill. So no more needles.
Right now I am in some pain. Not really sure of the cause but just not feeling the best. Trying to take it easy and choke some food down to keep my weight stable. I am going to get another blood transfusion here again in the near future. Still a bit low.
Had more scans done. That headache that I have been having turned out to be nothing more than that. Head and neck scan showed all clear. That is a big victory. Didn't want the noma spreading to my brain.
Scan of chest showed the primary tumor did grow, but only a tiny bit. Probably in the neighborhood of 2mm. Not much at all and pretty impressive since my last round of chemo was in July. The size of that primary tumor is still about 50% less than when they first discovered it. The other little bit of good info on that was that the growth occurred away from the lungs and sensitive organs. The smaller secondary tumor next to it stayed the same size. So while you don't like to hear the word growth, overall my body seems to be doing pretty well on slowing the progression of the tumor.
Update on the clinical trial that I mentioned in an earlier blog: still waiting to hear if I get accepted, but my doc told me not to hold my breath. The odds on me getting in are very small. He did want to start me on this other phase 1 clinical trial. I don't have much info on this trial other than I go back down in two weeks and if my white blood count is high enough, I could start right then and there. It is very early in the trial for this drug and basically how it works is that I will try it and get tested right away. If it holds the tumor size or decreases it then I keep going on it. If I have bad side effects or the tumor starts to grow then I stop the drug. Not real complicated. The nice thing is that it is a pill. So no more needles.
Right now I am in some pain. Not really sure of the cause but just not feeling the best. Trying to take it easy and choke some food down to keep my weight stable. I am going to get another blood transfusion here again in the near future. Still a bit low.
Monday, January 3, 2011
2011
A new year. Goodbye, 2010. Hello, 2011.
This time of year brings about that infamous topic of new year's resolutions. And just like so many others, my wife likes to ask that either loved or hated question: "What is your new year's resolution?" I can't begin to tell you how that question has taken on a whole new meaning for me.
In all the previous years when she would ask me that question, I would come back with the all-too-often used and trite answers that so many of us give. Exercise more, eat better, yada, yada, yada. This time I paused though because of all the changes that 2010 brought about. This time I answered, "my new year's resolution is to beat cancer."
My how times have changed! I already exercise like my life depends upon on it. My diet has received an extreme makeover to the one-hundredth degree. It took me by surprise how both of the goals that I would have thrown out as answers in the past underwhelmed me. My goal now is to survive.
My goal is to see 2012.
This time of year brings about that infamous topic of new year's resolutions. And just like so many others, my wife likes to ask that either loved or hated question: "What is your new year's resolution?" I can't begin to tell you how that question has taken on a whole new meaning for me.
In all the previous years when she would ask me that question, I would come back with the all-too-often used and trite answers that so many of us give. Exercise more, eat better, yada, yada, yada. This time I paused though because of all the changes that 2010 brought about. This time I answered, "my new year's resolution is to beat cancer."
My how times have changed! I already exercise like my life depends upon on it. My diet has received an extreme makeover to the one-hundredth degree. It took me by surprise how both of the goals that I would have thrown out as answers in the past underwhelmed me. My goal now is to survive.
My goal is to see 2012.
Subscribe to:
Posts (Atom)