I have to tell you, after seeing the Oncologist Tuesday we are now officially overwhelmed. He spoke to us for over an hour about the next phase of treatment and the importance of finding the right place to perform the bone marrow transplant. The overwhelming part is that we have to figure out where that is! He had some guidance, but not nearly enough. He basically said that I was in the driver's seat, that we should contact 4 places, interview at least 2, and then decide. The primary consideration is what any of these facilities is doing in the field of Multiple Myeloma Research. Options, covered by insurance, range from Boston to Seattle. We did actually speak to someone at the Dana Farber Institute in Boston, a leader in myeloma research. They were interested in me for potential entrance into clinical trials in the future, but said that for now I should get the transplant where ever I felt comfortable. We did find a connection between the University of Chicago and Dana Farber, so for the moment they appear to be in the lead, if I can just get them to return my phone calls!! Our prayer now is that God guide us to the right place, where ever that may be.
Deacon John
The Feast of the Conversion of Paul
Jan. 25, 2008
Friday, January 25, 2008
Monday, January 21, 2008
A Philippic on Health Care and Insurance
A philippic may seem a bit strong, probably very unminister like, and possibly even Unchristian, but I don’t believe so. It does describe how I feel. After all, I am a preacher, and I propose to preach.
One of the unfortunate inevitabilities of facing a life-threatening disease is figuring out how all of this vastly expensive treatment is going to get paid for. I begrudge no one their due when it comes to earning a living, after all, I want the best and brightest trying to find cures. Research is expensive, equipment is expensive, testing is expensive, all of these things affect the cost of care. I understand that, but still, how is the average person to get proper care if cost can be a barrier? In my own situation I was worried at first that my insurance may be woefully inadequate. Fortunately, the company I work for carries a special rider to cover costs, at least part of the costs, involved in my treatment. Beyond that we do have resources. We are certainly not wealthy, but we will, over time, be able to handle the cost of care. We are lucky. This whole process has awakened me to the plight of those without resources, without insurance, or with inadequate insurance. What are they to do? What about the very poor, whose access to any health care is limited by definition? Do we simply say to these people what Ebenezer Scrooge said of the poor in A Christmas Carol, “let them die and decrease the surplus population.” How is it possible that in the United States of America in the twenty-first century people literally die for lack of health care? This happens because in this country we see health care incorrectly. Our system views health care as a commodity, just another trade good to be bought and sold. With this view, it is easy to see how those without resources are left out. If it becomes just a matter of all the care you can afford, people will be left out, people will sicken. People will die, unnecessarily. This view of health care is sin, plain and simple. It is sin that people who need help cannot get it. Too many barriers are erected by the health care system, barriers that either push people away or seemed designed to intimidate them. Stacks of forms in language that makes sense to no one, probably not even the author of the form, how can one not be intimidated. No one, facing what is undoubtedly the worst time of their life, should have to deal with this. My sisters and brothers, this is sin. It’s not like sin, it is sin. The only way to end this sin is to change how we understand health care. Health care is not a commodity, it is a right. No one, in this day and age, should ever be unable to obtain needed care. As a nation we spend trillions of dollars on all manner of projects, yet caring for the health of our people languishes near the bottom. Propose a way to pay for all, and be prepared to be accused of destroying the system. Perhaps the system needs to be destroyed, it certainly must change. We cannot permit this sin to continue. Health care is a RIGHT. Thus ends the philippic.
Deacon John
Jan. 20, 2008
One of the unfortunate inevitabilities of facing a life-threatening disease is figuring out how all of this vastly expensive treatment is going to get paid for. I begrudge no one their due when it comes to earning a living, after all, I want the best and brightest trying to find cures. Research is expensive, equipment is expensive, testing is expensive, all of these things affect the cost of care. I understand that, but still, how is the average person to get proper care if cost can be a barrier? In my own situation I was worried at first that my insurance may be woefully inadequate. Fortunately, the company I work for carries a special rider to cover costs, at least part of the costs, involved in my treatment. Beyond that we do have resources. We are certainly not wealthy, but we will, over time, be able to handle the cost of care. We are lucky. This whole process has awakened me to the plight of those without resources, without insurance, or with inadequate insurance. What are they to do? What about the very poor, whose access to any health care is limited by definition? Do we simply say to these people what Ebenezer Scrooge said of the poor in A Christmas Carol, “let them die and decrease the surplus population.” How is it possible that in the United States of America in the twenty-first century people literally die for lack of health care? This happens because in this country we see health care incorrectly. Our system views health care as a commodity, just another trade good to be bought and sold. With this view, it is easy to see how those without resources are left out. If it becomes just a matter of all the care you can afford, people will be left out, people will sicken. People will die, unnecessarily. This view of health care is sin, plain and simple. It is sin that people who need help cannot get it. Too many barriers are erected by the health care system, barriers that either push people away or seemed designed to intimidate them. Stacks of forms in language that makes sense to no one, probably not even the author of the form, how can one not be intimidated. No one, facing what is undoubtedly the worst time of their life, should have to deal with this. My sisters and brothers, this is sin. It’s not like sin, it is sin. The only way to end this sin is to change how we understand health care. Health care is not a commodity, it is a right. No one, in this day and age, should ever be unable to obtain needed care. As a nation we spend trillions of dollars on all manner of projects, yet caring for the health of our people languishes near the bottom. Propose a way to pay for all, and be prepared to be accused of destroying the system. Perhaps the system needs to be destroyed, it certainly must change. We cannot permit this sin to continue. Health care is a RIGHT. Thus ends the philippic.
Deacon John
Jan. 20, 2008
Friday, January 18, 2008
Chemo, Dentistry, and Providence
I had my second round of chemo Wednesday, and amazingly it didn’t take long at all. I was finished in just two and a half hours. It could be because they were planning on adding as new drug to my regimen, but weren’t able to add it until next time. The drug they want to add is Aredia, a drug meant to strengthen bones. Multiple Myeloma can weaken bones, so this is a preventative measure. They couldn’t add it yet, though, because there is a nasty potential side affect, Osteonecrosis of the Jaw, or ONJ. This is where dentistry comes in. It is important that you be in good oral health to offset this side affect, and that you have had no teeth extracted in the last 90 days. This is where Providence enters the picture. Back in October I had a tooth that was breaking apart and starting to hurt. Being both stubborn and cheap I ignored it, figuring that sooner or later it would stop on its own. One day, however, I thought to myself, why suffer, you’re not poor, you can afford to go to the dentist. So I broke down and saw the dentist for the first time in more years than I care to reveal. The dentist fixed my teeth, extracted two broken ones, the last extraction having occurred less than 90 days ago. All of this took place before I knew that Poindexter was there, or at least before I knew what Poindexter was. Had I not gone to the dentist, how long would treatment have to have been delayed? What consequence could that have had? I honestly believe the hand of God was involved in that initial visit to the dentist. I don’t have any other explanation for my sudden change of heart. Believe me, on my own I don’t think I would have ever gone to the dentist. Was God watching out for me, helping to get ready for what was coming? Perhaps.
St Peregrine, Pray for Us
Deacon John
Jan., 18, 2008
St Peregrine, Pray for Us
Deacon John
Jan., 18, 2008
Saturday, January 12, 2008
Some Answers, More Questions
On this past Tuesday we saw the Oncologist and finally got some answers. Unfortunately, they weren't necessarily the ones we wanted, but what can you do? I was informed that I have Stage 3 Multiple Myeloma. The treatment options at this point boil down to one, a bone marrow transplant, to be done somewhere other than here in Louisville. As the Doctor explained, he wants us to go where the "next chapter of the book is being written." He said that while he is involved in research, this isn't the research being done here. So sometime in the next few months I guess we'll be hitting the road in search of the best treatment available. We are also, unfortunately, dependent on insurance. I did speak to my nurse case manager at the insurance company, and she was quite encouraging, making the options seem more open than I thought they were. It looks at the moment like we'll be heading for Chicago, but that could change. No, it wasn't the news we wanted, but short of a sudden miraculous cure, no news would be good enough. Throughout this trial, I have many things to hold on to, my wife, my family my wonderful friends, but mostly I have faith. This is new territory for all of us as we step into the darkness, not sure of what will happen. No matter what happens, faith is the thing we must not lose. I know that God is with us, leading us through this new place.
When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid to stand on, or you will be taught how to fly. Patrick Overton
Peace
Deacon John
Jan. 12, 2008
When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid to stand on, or you will be taught how to fly. Patrick Overton
Peace
Deacon John
Jan. 12, 2008
Friday, January 11, 2008
Tuesday, January 8, 2008
To Sleep, To Sleep, Perchance to Dream...
I’ve never been a person who required a lot of sleep, maybe 4-6 hours a night. I’ve also never been a person who had much trouble sleeping. No matter what was going on around me, I could usually sleep. Until now. Now sleep has become a precious commodity, one that seems to elude me at every turn. Part of it is the drugs, from what I’ve been told, but I’m sure part of it is simply plain old anxiety. What is going to happen next? That question haunts me at times. I’m going to see the Oncologist today and hopefully I’ll have more answers than questions when I leave, but I’m not counting on it. Facing an unknown future is frightening. On those nights when I wake up after sleeping an hour or maybe two, I find myself staring into the darkness praying for a glimpse of what is to come. Praying, at this point, seems to be about all I can do. I can put on the brave front, be strong and all of that, but those nights, staring into the darkness, well, I’m scared. But, I am still praying. I may be facing an unknown future, but I am certain that I am not facing it alone. I have been blessed with a loving, supportive, family and with wonderful, loving friends who are beside me every step of this journey. I also have faith. I don’t know why I have been asked to take on this challenge, but I believe with all my heart and soul that God is with me. Some of those nights, staring into the darkness, I can’t see God, I can’t grasp the enormity of what is happening. At times I may feel abandoned, but at the end of the day I know, I believe, that I am not, that God is sharing this journey with me. I pray that in this process I grow closer to God, and hopefully others may see God at work here as well. If that is the case, then no matter what happens, this journey is worth it.
St. Peregrine, pray for us.
Deacon John
January 8, 2008
St. Peregrine, pray for us.
Deacon John
January 8, 2008
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