Thank goodness for that March Madness

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.

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.

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.

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.

1. The PI3K clinical trial that I am still trying to qualify for calls for a significant time investment down here upon start up.
2. 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.

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.

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.

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.

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.

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.

1. 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.
   
2. 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.

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.