68 teams. Several days of almost uninterrupted TV viewing pleasure. I am not entirely sure why my physical condition has degraded to a point that I spend a good portion of my time in a predominately horizontal position on a very soft bed that we have set up in our TV room. But thanks to March Madness my dependence on HGTV to pass time has been greatly lessened. It's amazing that with digital cable and almost 2 billion channels to choose from it can be a challenge to find something interesting to watch.
Back to my physical condition. I am forcing myself to get up and walk more, to move the legs. It causes me great concern when I have difficulty walking up our stairs due to muscle fatigue. I want to say that the evidence of the rash on more forehead, a side effect of the chemo received, means that the chemicals are still pulsating through my veins and having an effect. While I welcome the symptoms if they are attacking the cancer that has invaded my bone marrow. I just don't don't know if that is the case. I need to be very careful not to slide down this physical degradation slope any further. I need to be careful not to give up. My worsening physical condition may come from the cancer winning, but I need to fight. I need to find the spark in me again that says even though I get knocked down I will get back up. The weaker I get the harder that becomes. I must try harder.
Saturday, March 19, 2011
Sunday, March 13, 2011
Update
I'm sorry but my deteriorating condition as of late has made it more and more difficult for me to post blogs. So for those of you who are looking for a source of info on my status please check out my brother's blog at http://heartofalonelyhunter.blogspot.com/. I think he does a good job summarizing my current condition. You will also get info about my father's status which is also taking its toll on our family.
I am also posting small updates on my Facebook page as I see fit.
Thanks again for all the prayers and please keep them coming. This is a very difficult time for me right now and I can use all the help I can get.
I am also posting small updates on my Facebook page as I see fit.
Thanks again for all the prayers and please keep them coming. This is a very difficult time for me right now and I can use all the help I can get.
Wednesday, March 2, 2011
Cancer Sucks
It has been a little over a year since my noma diagnosis and I thought I would take a moment to reflect on the year gone by. I was walking down the aisle of a Kroger grocery store the other day and it struck me how much my life has changed and also how quickly it seems to change. This mental trip started as I was noticing all the food stuffs that I would normally have bought to prepare our household meals that we no longer purchase because of my diet changes. However, at the same time it seemed like just yesterday that we did buy that stuff. It was a very weird feeling. It made me think about all the other things that have changed over this past year. Most of them seemed to revolve around my physical state and the toll the cancer has taken on my body. Overall my body has taken a big hit and I have to accept a new overall philosophy change from "I can do it" to "I can't do it."
This change in view has been demonstrated to me in many different ways lately. The first example comes about in my most recent visits to MD Anderson. MD Anderson is a large institution and spending the day there going to multiple appointments results in much walking around. At the entrance to the hospital they have rows and rows of wheelchairs. Up until this point I have been able to make my way around on my own steam. Albeit some days quicker than others. However, this last visit I had to make use of the wheelchair and have my brother and mom provide the means of power for my transportation around the hospital. While it was nice to be ushered around, it is still a bit of a pill to swallow admitting that you aren't able to get around on your own.
Another example comes about in my cabinet profession. My last project before I was to take a leave of absence demonstrated the progression of this disease and its toll it is taking on me. This project has been drawn out longer than most for various reasons and when I started it I was more than up for the challenge of completing the project, right up to the installation of the cabinets. However, as time wore on and the project drew out longer and longer, the deteriorating status of my health made it clear that I was not going to be able to complete the project on my own. In fact, I had to ask for help from the general contractor and they ended up installing the cabinets themselves. I went from working on the job as normal to struggling to deliver the cabinets to needed to ask for somebody else to complete the job because I was physically unable to do it. The designer on the project kept expressing her concern about me being able to complete the job as time wore on and I keep assuring her that I would be fine. Guess her prophetic qualities turned out to be a little more accurate than mine.
Cancer sucks.
This change in view has been demonstrated to me in many different ways lately. The first example comes about in my most recent visits to MD Anderson. MD Anderson is a large institution and spending the day there going to multiple appointments results in much walking around. At the entrance to the hospital they have rows and rows of wheelchairs. Up until this point I have been able to make my way around on my own steam. Albeit some days quicker than others. However, this last visit I had to make use of the wheelchair and have my brother and mom provide the means of power for my transportation around the hospital. While it was nice to be ushered around, it is still a bit of a pill to swallow admitting that you aren't able to get around on your own.
Another example comes about in my cabinet profession. My last project before I was to take a leave of absence demonstrated the progression of this disease and its toll it is taking on me. This project has been drawn out longer than most for various reasons and when I started it I was more than up for the challenge of completing the project, right up to the installation of the cabinets. However, as time wore on and the project drew out longer and longer, the deteriorating status of my health made it clear that I was not going to be able to complete the project on my own. In fact, I had to ask for help from the general contractor and they ended up installing the cabinets themselves. I went from working on the job as normal to struggling to deliver the cabinets to needed to ask for somebody else to complete the job because I was physically unable to do it. The designer on the project kept expressing her concern about me being able to complete the job as time wore on and I keep assuring her that I would be fine. Guess her prophetic qualities turned out to be a little more accurate than mine.
Cancer sucks.
Tuesday, February 8, 2011
Update
Sorry it has taken me so long to give an update. Right now I am spending some time down in Houston with my parents (have been here for a little over a week) for a couple of reasons.
This past Wednesday I was tested again to see if I qualify for the PI3K trial, but failed because my red blood cell count had dropped again to a below-acceptable level. So I got another blood transfusion on Thursday, had a reaction to the transfusion starting on Friday afternoon, and spent most of Saturday in extreme pain. The fun just doesn't stop.
I have been trying to keep my weight up as I have dropped down in the low 150's. Trying to get some form of exercise each day even if it is ever so diminutive in quantity. I find that if I push it too hard, I pay for it severely the next day.
Thanks to all of you for your continued prayers and support. And a big thanks goes out to mom and dad, my wife and kids, and my little brother. With all of your help, we will still turn this train around.
- The PI3K clinical trial that I am still trying to qualify for calls for a significant time investment down here upon start up.
- I have been feeling not so well lately and am needing a little help in the care department. And since Anna has to work all day and the kids are at school, I felt I might be able to get myself better care with my mother's help.
This past Wednesday I was tested again to see if I qualify for the PI3K trial, but failed because my red blood cell count had dropped again to a below-acceptable level. So I got another blood transfusion on Thursday, had a reaction to the transfusion starting on Friday afternoon, and spent most of Saturday in extreme pain. The fun just doesn't stop.
I have been trying to keep my weight up as I have dropped down in the low 150's. Trying to get some form of exercise each day even if it is ever so diminutive in quantity. I find that if I push it too hard, I pay for it severely the next day.
Thanks to all of you for your continued prayers and support. And a big thanks goes out to mom and dad, my wife and kids, and my little brother. With all of your help, we will still turn this train around.
Saturday, January 22, 2011
Tragedy Strikes Again
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.
So we again walk down this path of unanswered questions, anger, and fear.
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.
Wednesday, December 22, 2010
No 40 yard dash for me
I regularly try to make it up to 24 Hour Fitness to get in some exercise. I realize how important it is to keep these old bones moving in this battle with my noma. But it is difficult on a couple of different levels.
My dad recently threw out his back lifting something that he shouldn't have been lifting. He has had, or should I say is still trying, to come to terms that he simply can't do what he used to be able to physically. But it is hard for him to do, as I imagine it is for people of all ages to admit physical limitations. However, for me at 39, it feels even more wrong. I should be able to do more. I wish I could do more. I long for the days when I could run at top speed.
- Physical state. Not only does my body not want to cooperate I would actually rather just stay in bed. My anemia has left me feeling drained and depleted. I regularly get dizzy just from standing from a seated position. Naps sound like a splendid idea throughout the day. I have lost a little bit more weight and my appetite just doesn't seem to be cooperating and allowing me to put the weight back on.
- Psychological aspect. Here I am in a gym, surrounded by people sweating and grunting and pumping iron. There are quite some physical specimans there and they could easily give a person in much better condition than me a complex. But even those people don't get to me like the ones I see on TV. Like every other gym, the place is full of flat screen TVs and I gravitate towards the ones with ESPN on them. There you see athletes of all sports, be it football, basketball, soccer, tennis competing at such high levels. Amazing fine-tuned athletic machines performing at stratospheric levels. I glance at a football highlight and there is a video of a wide receiver catching a pass and running at full speed towards the end zone. And I wonder what it feels like to run full speed. I haven't run at full speed for probably about a year. I miss it. The best I can muster is a slow jog around the gym. Five laps is about all I can manage before it feels like my heart is going to imitate a scene from the movie Aliens and come leaping out of my chest. It shouldn't be like this. I shouldn't be like this.
My dad recently threw out his back lifting something that he shouldn't have been lifting. He has had, or should I say is still trying, to come to terms that he simply can't do what he used to be able to physically. But it is hard for him to do, as I imagine it is for people of all ages to admit physical limitations. However, for me at 39, it feels even more wrong. I should be able to do more. I wish I could do more. I long for the days when I could run at top speed.
Wednesday, December 15, 2010
Update
Last Friday I had another biopsy done down at MD Anderson. As I mentioned in a previous blog this was done to get some more tissue for them to test to see if I qualify for a clinical trial. The biopsy came off with out a hitch. In fact I was more awake during this one than I had been for my previous two. I got a call today saying they have my tissue slides ready and they are going to send them off for the test. I should know by late next week if I qualified or not. What a wonderful Christmas present that would be.
Not much else going on right now other than that. My days are pretty normal and boring. I am fatigued a lot. By 3 in the afternoon I just want to lie down and take a nap. Don't know if this is still related to the anemia or not. Doesn't help matters that I am writing this at 10:51pm. Still trying to work out in some fashion every day. The work outs are not long and they are not complex. Just trying to get the heart rate up a bit and put a little stress on the old body. The neuropathy is still pretty bad in the feet and so that limits me on how long and how hard I push myself.
I have really come to enjoy my lunch dates with friends. I have always been an introvert and done quite well at spending time by myself. Working by myself was never a problem either. Matter of fact, I kind of enjoyed it. However, there seems to be a slight shift going on. I find myself not enjoying sitting around the house by myself. It has become harder and harder to drag myself up to work knowing that I will be alone there as well. I don't feel like I am sitting around moping or feeling badly about my situation or anything like that. I just find myself looking forward to the outings and how they break up my otherwise solitary day.
Not much else going on right now other than that. My days are pretty normal and boring. I am fatigued a lot. By 3 in the afternoon I just want to lie down and take a nap. Don't know if this is still related to the anemia or not. Doesn't help matters that I am writing this at 10:51pm. Still trying to work out in some fashion every day. The work outs are not long and they are not complex. Just trying to get the heart rate up a bit and put a little stress on the old body. The neuropathy is still pretty bad in the feet and so that limits me on how long and how hard I push myself.
I have really come to enjoy my lunch dates with friends. I have always been an introvert and done quite well at spending time by myself. Working by myself was never a problem either. Matter of fact, I kind of enjoyed it. However, there seems to be a slight shift going on. I find myself not enjoying sitting around the house by myself. It has become harder and harder to drag myself up to work knowing that I will be alone there as well. I don't feel like I am sitting around moping or feeling badly about my situation or anything like that. I just find myself looking forward to the outings and how they break up my otherwise solitary day.
Monday, December 6, 2010
Switching seats
Yesterday I got to participate in an experience that as of lately seems to be very rare. I got to go to a doctor, but not as the patient.
My wife is experiencing some extreme pain in her upper left shoulder. All signs point to a pinched nerve, but it is hard to know for sure. After enduring 5 days of high level pain she finally decided yesterday to bite the bullet and go see a doc even though we highly suspected that they would just tell us what we already knew. So about 4:30pm, I drive her to Care Now (we have come to love the convenience of these clinics over our family practictioner) and enter a process that I have become all too familiar with lately: fill out forms, nurse checks vitals, wait for the doc in a small examination room, and get examined.
But this time I got to sit in the "support" chair. I was there, not as the patient, but as the one who gives moral support and encouragement. I didn't have to hop up on the exam table. I didn't get interviewed. I didn't get poked and prodded. It was nice. Don't get me wrong. I am very sorry that my wife is in pain and that we had to go to the doctor in the first place. But being in the "support" chair was a refreshing change of view. I relished the chance to be the caretaker instead of the sick one and I enjoyed the role swap even if it was for a brief moment.
There was another emotion swimming around in me also, though. Again, while I am sorry for my wife's pain, I experienced a certain joy that I wasn't the only sick one around. My wife and I shared something in common. We were both not feeling well. I had somebody to commiserate with, somebody on my team. The doctor even prescribed the same medicine that I am taking for pain. Granted, our illnesses are completely different, but for a moment, I didn't feel special - called out from the crowd because of some extraordinary characteristics. I realize that may sound sick, that I would take joy in somebody else's pain. But it gets hard on a guy being the only sick one in a family. You get tired of being "special" under circumstances like this.
And it will be a brief moment indeed. This Thursday I head back down to MD Anderson for some tests and then ultimately for another biopsy on Friday. Looks like I will be hopping back onto that exam table real soon and back to my familiar view of loved ones in the "support" chairs.
My wife is experiencing some extreme pain in her upper left shoulder. All signs point to a pinched nerve, but it is hard to know for sure. After enduring 5 days of high level pain she finally decided yesterday to bite the bullet and go see a doc even though we highly suspected that they would just tell us what we already knew. So about 4:30pm, I drive her to Care Now (we have come to love the convenience of these clinics over our family practictioner) and enter a process that I have become all too familiar with lately: fill out forms, nurse checks vitals, wait for the doc in a small examination room, and get examined.
But this time I got to sit in the "support" chair. I was there, not as the patient, but as the one who gives moral support and encouragement. I didn't have to hop up on the exam table. I didn't get interviewed. I didn't get poked and prodded. It was nice. Don't get me wrong. I am very sorry that my wife is in pain and that we had to go to the doctor in the first place. But being in the "support" chair was a refreshing change of view. I relished the chance to be the caretaker instead of the sick one and I enjoyed the role swap even if it was for a brief moment.
There was another emotion swimming around in me also, though. Again, while I am sorry for my wife's pain, I experienced a certain joy that I wasn't the only sick one around. My wife and I shared something in common. We were both not feeling well. I had somebody to commiserate with, somebody on my team. The doctor even prescribed the same medicine that I am taking for pain. Granted, our illnesses are completely different, but for a moment, I didn't feel special - called out from the crowd because of some extraordinary characteristics. I realize that may sound sick, that I would take joy in somebody else's pain. But it gets hard on a guy being the only sick one in a family. You get tired of being "special" under circumstances like this.
And it will be a brief moment indeed. This Thursday I head back down to MD Anderson for some tests and then ultimately for another biopsy on Friday. Looks like I will be hopping back onto that exam table real soon and back to my familiar view of loved ones in the "support" chairs.
Thursday, December 2, 2010
Feeling a little better
The Wednesday before Thanksgiving I was down at MD Anderson and received an injection of radioactive isotopes. No superhuman powers, but I do believe the isotopes are doing their job. I am still on the pain medication, but I feel that my overall pain has decreased. There have been some side effects: mostly nausea, dizziness, and fatigue. Some of my fatigue can also probably be attributed to being close to anemic.
According to the stats, the average expectancy of pain relief from the isotopes is about 4 months, although there have been cases reported of it lasting over a year. I am hoping for the year route. It is a treatment that I can repeat down the road if the pain returns.
I also met with a researcher at MD Anderson regarding my potential participation in an upcoming clinical trial. They needed my permission to run some tests on my biopsy sample to see if I would qualify. The tests came back "uninformative," which means they need to do another biopsy they can run tests against. Apparently a very small percentage of people qualify for the clinical trial (3 to 4% of those tested), but those that do qualify, 80 to 90% have shown very encouraging results. So I have agreed to have another biopsy in hopes that I will be able to participate in the study. I have yet to hear back about when the biopsy will take place. Prayers about the upcoming biopsy and that I would qualify for the study would be greatly appreciated.
According to the stats, the average expectancy of pain relief from the isotopes is about 4 months, although there have been cases reported of it lasting over a year. I am hoping for the year route. It is a treatment that I can repeat down the road if the pain returns.
I also met with a researcher at MD Anderson regarding my potential participation in an upcoming clinical trial. They needed my permission to run some tests on my biopsy sample to see if I would qualify. The tests came back "uninformative," which means they need to do another biopsy they can run tests against. Apparently a very small percentage of people qualify for the clinical trial (3 to 4% of those tested), but those that do qualify, 80 to 90% have shown very encouraging results. So I have agreed to have another biopsy in hopes that I will be able to participate in the study. I have yet to hear back about when the biopsy will take place. Prayers about the upcoming biopsy and that I would qualify for the study would be greatly appreciated.
Tuesday, November 23, 2010
Spiderman: Round 2
Well, it looks like I get another chance to become a superhero. Tomorrow I will be down at MD Anderson again to receive an injection of radioactive isotopes if all goes according to plan. Since the beam radiation turned out to be a "no-go" for my pelvic region, the doc and his buddies decided that this was the next course of action.
My understanding of how these things work is that I am receive an IV infusion of these radioactive isotopes that will then course through my body seeking out the metastisized bone tumors. Upon finding them they park themselves by the tumors and thereby subject them to doses of radiation. How effective is it? Is it going to help me out and kill or wound some of these tumors growing in my hips? Will it give me superhuman powers? I don't know. I just don't know.
My understanding of how these things work is that I am receive an IV infusion of these radioactive isotopes that will then course through my body seeking out the metastisized bone tumors. Upon finding them they park themselves by the tumors and thereby subject them to doses of radiation. How effective is it? Is it going to help me out and kill or wound some of these tumors growing in my hips? Will it give me superhuman powers? I don't know. I just don't know.
Wednesday, November 17, 2010
Acceptance
In one of my earlier blog posts, I made reference to the stages in the Kubler-Ross model grief cycle in which the last stage is acceptance. At what point can a person look their own mortality in the face and accept it? At what point can they reach an inner peace with the fact that their days on this earth are near an end?
In movies I have seen characters that are about to enter into a situation/battle/conflict that they know is sure to spell their demise and they have a look of panic on their face. Just a few mere moments later, a sense of calm replaces that panic and they muster up the courage to go face their death. What happens in that instant where one moment they are trying everything to avoid death, and the next they are at peace with the fact that they are going to die? I realize that this is Hollywood and a gross oversimplification of the whole ordeal, but how does one make that final transition to acceptance? Even Jesus in the garden of Gethsemane asks the question. "My Father, if it is possible, may this cup be taken from me." Even though he would go on to accept his death, Jesus doesn't want to die.
Things didn't go as well as I had hoped this past week down at MD Anderson. What I thought was bony pain of an arthritic nature was revealed by the scans to be many different metastatic bony tumors. My pain was not being caused by the old tumors healing but by new tumors growing. The radiation oncologist basically said there isn't anything he can do for me. There are simply too many spots to treat. Even if he did treat them, all it would do is knock them back a bit and alleviate some pain. It wouldn't kill the cancer there and it would inevitably grow back. And the radiation is a one shot deal.
I am trying like hell not to give up, but at what point do you start working on the acceptance thing?
In movies I have seen characters that are about to enter into a situation/battle/conflict that they know is sure to spell their demise and they have a look of panic on their face. Just a few mere moments later, a sense of calm replaces that panic and they muster up the courage to go face their death. What happens in that instant where one moment they are trying everything to avoid death, and the next they are at peace with the fact that they are going to die? I realize that this is Hollywood and a gross oversimplification of the whole ordeal, but how does one make that final transition to acceptance? Even Jesus in the garden of Gethsemane asks the question. "My Father, if it is possible, may this cup be taken from me." Even though he would go on to accept his death, Jesus doesn't want to die.
Things didn't go as well as I had hoped this past week down at MD Anderson. What I thought was bony pain of an arthritic nature was revealed by the scans to be many different metastatic bony tumors. My pain was not being caused by the old tumors healing but by new tumors growing. The radiation oncologist basically said there isn't anything he can do for me. There are simply too many spots to treat. Even if he did treat them, all it would do is knock them back a bit and alleviate some pain. It wouldn't kill the cancer there and it would inevitably grow back. And the radiation is a one shot deal.
I am trying like hell not to give up, but at what point do you start working on the acceptance thing?
Friday, November 12, 2010
More learnings
Here's an update on what we learned at our appointments today.
Shoulder. The scans on the right shoulder show a small tear that they don't typically perform surgery on to fix. But they also show tumor growth in the head of the humerus (arm bone that butts up into the shoulder) and down it a bit of the arm. Good news is that the tough outer part of the bone looks really strong so there is no immediate concern for a fracture in that area. The PET scan does show (likely) the same in the left shoulder although we don't have the MRI on that shoulder/arm to confirm. The mid-level physician who met with us (the main doctor was still in the OR) said that he recommends radiation on that area along with all the other radiation that the radiation oncologist will likely recommended.
Neuropathy. Josh went through a series of tests within physical therapy to measure his endurance, physical capabilities, etc., including a walk around the exercise area for 6 minutes as a therapist walked next to him pushing a wheeled stick that measured how far he walked. He was clearly the person least debilitated in the entire room. The therapist gave him techniques that should help reduce the neuropathy:
Shoulder. The scans on the right shoulder show a small tear that they don't typically perform surgery on to fix. But they also show tumor growth in the head of the humerus (arm bone that butts up into the shoulder) and down it a bit of the arm. Good news is that the tough outer part of the bone looks really strong so there is no immediate concern for a fracture in that area. The PET scan does show (likely) the same in the left shoulder although we don't have the MRI on that shoulder/arm to confirm. The mid-level physician who met with us (the main doctor was still in the OR) said that he recommends radiation on that area along with all the other radiation that the radiation oncologist will likely recommended.
Neuropathy. Josh went through a series of tests within physical therapy to measure his endurance, physical capabilities, etc., including a walk around the exercise area for 6 minutes as a therapist walked next to him pushing a wheeled stick that measured how far he walked. He was clearly the person least debilitated in the entire room. The therapist gave him techniques that should help reduce the neuropathy:
- Foot massages (self given since he's extremely ticklish)
- Move foot around in a bowl of rice to stimulate the senses
- Wear fuzzy socks occasionally to change up the sensory routine
- Wear looser, more cushioning shoes
No more jumping rope...at least right now
Josh has, despite the additional pain he's been feeling over the last 5-6 weeks, been continuing to try to work out 3 times a week, including jumping rope, bench press, step-ups and the like. Yesterday, the doctor told Josh that he's not to jump rope or do anything more physically demanding than walking for the near future because of the risk of fractures.
We learned yesterday that:
Neuropathy. Josh is trying a medicine that will hopefully help him deal better with the neuropathy in his feet. We may try an aggressive acupuncture regime as well to see what that can do. And he meets with a specialist here today to see what strategies they suggest.
Next Steps. Josh's biopsy taken many months back is being tested to see if he's one of only 3 to 4% of the population that has a particular gene so that he qualifies for a clinical trial for a chemotherapy that has shown tremendous effectiveness. We'll know in about a month. If he doesn't qualify for that one, there are other clinical trials either open now or upcoming that he'll participate in. But the next chemo round won't be until after the radiation therapy is complete.
Sounds like Josh will be quite busy between now and Christmas. But not with jumping rope.
We learned yesterday that:
- The primary tumors in his chest are still stable (after their considerable reduction with chemo).
- He has a very small mass growing next to the two primary tumors, but the doctor isn't worried about that yet.
- The cancer in his bones (particularly his hip area) has surged since last time...hence his increased pain.
- The radiation he had to his L5 vertebrae in his back did great things to beat the cancer back in that location. The doctor is very excited about this result.
Neuropathy. Josh is trying a medicine that will hopefully help him deal better with the neuropathy in his feet. We may try an aggressive acupuncture regime as well to see what that can do. And he meets with a specialist here today to see what strategies they suggest.
Next Steps. Josh's biopsy taken many months back is being tested to see if he's one of only 3 to 4% of the population that has a particular gene so that he qualifies for a clinical trial for a chemotherapy that has shown tremendous effectiveness. We'll know in about a month. If he doesn't qualify for that one, there are other clinical trials either open now or upcoming that he'll participate in. But the next chemo round won't be until after the radiation therapy is complete.
Sounds like Josh will be quite busy between now and Christmas. But not with jumping rope.
Monday, November 8, 2010
Test Week
This is the week my wife and I head back down to MD Anderson for the next set of two-month scans. My last day of chemo was July 15th, so this will be the second round of scans post chemo to check to see if the tumors are stable or progressing. I have CT scans and MRIs and X-rays set up for Wednesday and then meet with the doc on Thursday to go over the results. My gut instinct tells me they are stable. Don't ask me why I think that...I just have a feeling. The rest of my body: that's another story.
I have been plagued by bouts of pain mainly in my hips and knees. Some days it is so bad that I have trouble standing and walking. Not really sure what the origin of this pain is, but maybe we can get some answers this week. The neuropathy in my feet has progressed also. This has greatly affected my ability to work since I now need to get off my feet for a significant time period at least every hour or two. Standing on concrete and neuropathy of the feet don't mix well. I have set up an appointment with a Baylor pain management clinic for next week in hopes of developing a plan to deal with all this pain.
I have been plagued by bouts of pain mainly in my hips and knees. Some days it is so bad that I have trouble standing and walking. Not really sure what the origin of this pain is, but maybe we can get some answers this week. The neuropathy in my feet has progressed also. This has greatly affected my ability to work since I now need to get off my feet for a significant time period at least every hour or two. Standing on concrete and neuropathy of the feet don't mix well. I have set up an appointment with a Baylor pain management clinic for next week in hopes of developing a plan to deal with all this pain.
Monday, November 1, 2010
Atypical diet
At 39 years of age I have to admit there were times I wished I had the physique of my high school days. I have never really been overweight, but looking in the mirror I sure would have liked to make that stomach bulge I see go away. Mission accomplished.
Except I think I shot a little too far. My cancer diet consisting of 6 rounds of chemo, a tonsillectomy, and 15 rounds of radiation have not only gotten rid of the stomach bulge, it has been so effective that I appear to be wasting away. I am down to 165 pounds as of the other night. That is coming off a high of 205 late in the chemo rounds. Forty pounds lost!! In most cases people would be jumping up and down for joy with that. Hey, my pants and shorts no longer fit me! I have to wear a belt with everything!
Except in this case, it isn't good. I am really struggling with the whole pain management, remaining active, staying healthy gig. It is really a downward spiral:
My stomach feels so small and there are various things affecting my appetite. Some foods still taste a little off, I fill up faster when I do eat, and I don't feel like eating as often as I used to. All of these cause my caloric intake to diminish to that of 5-year-old. Add to that the fact that many of the foods in my new diet just don't have that much in them when it comes to calories, it makes it even harder.
I joked about becoming a superhero like Spiderman when I was receiving my radiation treatments. This would have been the best Halloween if it had come true. But when I now look in the mirror and see the bones protruding, perhaps with the help of a little makeup, I should have gone as a skeleton.
Except I think I shot a little too far. My cancer diet consisting of 6 rounds of chemo, a tonsillectomy, and 15 rounds of radiation have not only gotten rid of the stomach bulge, it has been so effective that I appear to be wasting away. I am down to 165 pounds as of the other night. That is coming off a high of 205 late in the chemo rounds. Forty pounds lost!! In most cases people would be jumping up and down for joy with that. Hey, my pants and shorts no longer fit me! I have to wear a belt with everything!
Except in this case, it isn't good. I am really struggling with the whole pain management, remaining active, staying healthy gig. It is really a downward spiral:
- I don't feel good.
- I rest to take it easy.
- I become inactive.
- I don't eat.
- I lose weight.
- I get weaker.
- And back to #1: I don't feel good...
My stomach feels so small and there are various things affecting my appetite. Some foods still taste a little off, I fill up faster when I do eat, and I don't feel like eating as often as I used to. All of these cause my caloric intake to diminish to that of 5-year-old. Add to that the fact that many of the foods in my new diet just don't have that much in them when it comes to calories, it makes it even harder.
I joked about becoming a superhero like Spiderman when I was receiving my radiation treatments. This would have been the best Halloween if it had come true. But when I now look in the mirror and see the bones protruding, perhaps with the help of a little makeup, I should have gone as a skeleton.
Thursday, October 21, 2010
Family
Not too far back my mom gave me a picture frame with the caption "The love of a family is life's greatest blessing." In it she put a picture of my wife and I with our kids when they were about five or six years old. There is something about looking at the faces of my kids when they were younger that just pulls on the ole heart. Not that I don't love them to death now and think they are beautiful kids, there is just something about the images of when they were younger that gets to me. Perhaps it is because it automatically triggers a flood of great memories that we have shared. Anyway, I have placed that picture where I can see when I wake up to remind me that in that family category I am truly blessed.
I feel I could speak volumes about just my wife and kids and how wonderful they are if I possessed the soul of a writer. Then maybe I would be able to articulate my love for this woman who agreed to be my wife and share her life with me. I wish I could write poetically about her strength and beauty and how she has been a rock for me in these difficult times. To thank her for giving me these two wonderful works of art, so beautiful and smart. Just looking at my kids brings me so much joy.
But my blessings extend past my immediate family. It extends to my father who, being far more advanced in years then me and having mowed 20 billion lawns that day, still feels the need to help me carry my luggage down the stairs because he is concerned about my physical state. It extends to my mother, who happens to be 1500 miles away right now but still remembers to call for a status update because I happened to see the doctor today. To my little brother who has given up countless hours of personal time in order to research my disease and accompany me down to MD Anderson and literally sit for hours waiting on doctors. To my grandma who apparently has all of Newaygo County, Michigan praying for me. To my older brother, whom upon hearing my diagnosis, travels thousands of miles to be with me even though he is going through a rough spell himself. To my sister-in-law who hand knits me a scarf to keep me warm when we traveled to Michigan. To my other sister-in-law who buys me a year's subscription to Netflix to give me something to do while being down and out from the chemo. To my father-in-law who calls on a whim just to discuss one of my favorite topics: college football. To my mother-in-law who gives us a large sum of money to help with the medical costs. To my nephew, who upon hearing my diagnosis, shaves his head as a sign of support. To all my relatives on my dad's side of the family that welcomed us with open arms and love and support this past summer at a family reunion. And so many others.
Whatever the outcome of my journey with this noma ends up being, I travel this road knowing that I am truly blessed.
I feel I could speak volumes about just my wife and kids and how wonderful they are if I possessed the soul of a writer. Then maybe I would be able to articulate my love for this woman who agreed to be my wife and share her life with me. I wish I could write poetically about her strength and beauty and how she has been a rock for me in these difficult times. To thank her for giving me these two wonderful works of art, so beautiful and smart. Just looking at my kids brings me so much joy.
But my blessings extend past my immediate family. It extends to my father who, being far more advanced in years then me and having mowed 20 billion lawns that day, still feels the need to help me carry my luggage down the stairs because he is concerned about my physical state. It extends to my mother, who happens to be 1500 miles away right now but still remembers to call for a status update because I happened to see the doctor today. To my little brother who has given up countless hours of personal time in order to research my disease and accompany me down to MD Anderson and literally sit for hours waiting on doctors. To my grandma who apparently has all of Newaygo County, Michigan praying for me. To my older brother, whom upon hearing my diagnosis, travels thousands of miles to be with me even though he is going through a rough spell himself. To my sister-in-law who hand knits me a scarf to keep me warm when we traveled to Michigan. To my other sister-in-law who buys me a year's subscription to Netflix to give me something to do while being down and out from the chemo. To my father-in-law who calls on a whim just to discuss one of my favorite topics: college football. To my mother-in-law who gives us a large sum of money to help with the medical costs. To my nephew, who upon hearing my diagnosis, shaves his head as a sign of support. To all my relatives on my dad's side of the family that welcomed us with open arms and love and support this past summer at a family reunion. And so many others.
Whatever the outcome of my journey with this noma ends up being, I travel this road knowing that I am truly blessed.
Tuesday, October 19, 2010
Ups and Downs
We have all heard the metaphor that life is like a roller coaster. It has its ups and downs. But really, lately I feel like my life takes Run Away Mountain at Six Flags and kicks its butt (that is an amusement park here in Dallas for you non-Texas readers). I have been happy, I have been sad. I have been feeling good, I have been wallowing in pain. I have been optimistic, I have been beaten down. Keep in mind that these changes sometimes don't happen over weeks but happen in the same day. "What do you expect considering what you are going through?" I have been told many times. I don't know. I have never been through anything like this before.
A week and half ago I went to my daughter's soccer game at 9am on a beautiful Saturday morning. I started to feel some pain come on. I took some pain meds and did my best to grin and bear it. However, by lunch time I was lying flat on my back on the couch unable to really get up. I had extreme pain in both knees, both hips, both shoulders, and both elbows. Strangely, my back really wasn't bothering me. Where was this pain coming from? Earlier that week I had my monthly massage and left there feeling really good. Now here I am unable to get off the couch. Talk about roller coaster. I ended up spending that whole day, literally until I went to bed, lying flat on that couch. I loaded up on the pain meds and tried to ride it out. Fortunately, college football was on to keep me entertained.
Given my current health condition I am trying really hard to listen to my body. I am keeping a pain log so that I have a record of what hurts and when and what I may have done to cause it, and how I treated it. Just looking for any pattern or trends that may help in my battle. But I couldn't make any real sense of this latest pain outbreak. It had these characteristics, but not those. It felt like this, but a little different. The best I can figure at this point is that I had a small reaction to a cold. I ran a low fever at one confirmed point and probably had at another also if I had taken my temperature. Pain meds that help with fevers seemed to give me more relief than others. That all seemed to indicate the cold scenario. But it wasn't conclusive. And one thing I hate is loose ends.
Then my mind goes down that dark path. What if this is my body shutting down? What if this the cancer taking over and I am on the start of the end? When I first met with the doc down at MD Anderson he felt it necessary to give me the prognosis of somebody with stage 4 lung cancer as I have. The typical patient lasts about 7 months. Here I am at about 8 months from the initial diagnosis. (Everybody join in and sing "Happy you lasted longer than the typical cancer patient with stage 4 lung cancer to you" to the tune of "Happy Birthday") Granted, he also said I am not the typical cancer patient. The next date he threw out there was 2 years. Is that how much I can expect? The last number he threw out was that some live 5-7 years. Better, but still not good enough. If the end is now about 4-6 years away then I am still missing way too much of my life.
How do I get my body back on top of this again? Is it even possible? I have lost about 30 pounds from my peak weight during chemo. I know it is strange that I actually gained weight during chemo, but I did. My bones are showing when I look in the mirror. My mind seems to still be good. I still have a belief that I can get back to where I was pre-noma. Just hope I am not fooling myself.
A week and half ago I went to my daughter's soccer game at 9am on a beautiful Saturday morning. I started to feel some pain come on. I took some pain meds and did my best to grin and bear it. However, by lunch time I was lying flat on my back on the couch unable to really get up. I had extreme pain in both knees, both hips, both shoulders, and both elbows. Strangely, my back really wasn't bothering me. Where was this pain coming from? Earlier that week I had my monthly massage and left there feeling really good. Now here I am unable to get off the couch. Talk about roller coaster. I ended up spending that whole day, literally until I went to bed, lying flat on that couch. I loaded up on the pain meds and tried to ride it out. Fortunately, college football was on to keep me entertained.
Given my current health condition I am trying really hard to listen to my body. I am keeping a pain log so that I have a record of what hurts and when and what I may have done to cause it, and how I treated it. Just looking for any pattern or trends that may help in my battle. But I couldn't make any real sense of this latest pain outbreak. It had these characteristics, but not those. It felt like this, but a little different. The best I can figure at this point is that I had a small reaction to a cold. I ran a low fever at one confirmed point and probably had at another also if I had taken my temperature. Pain meds that help with fevers seemed to give me more relief than others. That all seemed to indicate the cold scenario. But it wasn't conclusive. And one thing I hate is loose ends.
Then my mind goes down that dark path. What if this is my body shutting down? What if this the cancer taking over and I am on the start of the end? When I first met with the doc down at MD Anderson he felt it necessary to give me the prognosis of somebody with stage 4 lung cancer as I have. The typical patient lasts about 7 months. Here I am at about 8 months from the initial diagnosis. (Everybody join in and sing "Happy you lasted longer than the typical cancer patient with stage 4 lung cancer to you" to the tune of "Happy Birthday") Granted, he also said I am not the typical cancer patient. The next date he threw out there was 2 years. Is that how much I can expect? The last number he threw out was that some live 5-7 years. Better, but still not good enough. If the end is now about 4-6 years away then I am still missing way too much of my life.
How do I get my body back on top of this again? Is it even possible? I have lost about 30 pounds from my peak weight during chemo. I know it is strange that I actually gained weight during chemo, but I did. My bones are showing when I look in the mirror. My mind seems to still be good. I still have a belief that I can get back to where I was pre-noma. Just hope I am not fooling myself.
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