John passed away today at 2:25pm. Thanks for all your thoughts and prayers. I will try to update this blog at some point to give details on his memorial service.
Thanks
Jody
Sunday, April 18, 2010
Saturday, March 20, 2010
kablam!
So we'll blow the dust off the blog in style and shotgun the latest (and not so late) out to the masses. You guys deserve better than this...
I do apologize for the long delay. The holidays were only an excuse not to be writing. I just wasn't feeling very shary. I'm still not, but the pressure this week alone has my heartrate way too high though at least my blood pressure is okay.
My last batch of chemo was in early December and I was looking forward to the time off. I'd made some special gifts for kids I know after finding custom thumbdrives that looked like Clone Troopers. I filled them up with the old NPR Star Wars radio dramas and so far all the boys have really liked them. :)
Jody and I had my in-laws come for Christmas and I worked my magic to get premo seats and a special dinner with car service to see Young Frankenstein on stage at the Kennedy Center. It was a wonderful night not soon to be forgotten.
The new year arrived though and I was not feeling so great again. At the time I chalked it up to having caught something from my father in law whom was not perfectly well during his visit. Various remedies kept things at bay and I was able to make a scheduled CT scan and followup to learn that, on Xeloda alone last year, the disease had managed to progress... a little... but in my mind, it was pretty devastating. Dr. Lee proposed I go back on Xeloda with Avastin again but to taper it off so that I could tolerate it better. That would have started in February but I miised seeing Dr. Lee because of the weather.
The recordbreaking snowstorm came and had to be dealt with. I mustered what energy I could, as I could, and we eventually got ourselves dug out. We had help and we were thankful for it, but my cough was getting worse though nothing was ever coming up. I feared infection or pneumonia and went to my general doctor.
Two rounds of antibiotics made no improvement and the cough worsened to the point that it was triggering my stomach to want to be emptied. That has sucked and has only added to my fatigue, more weight loss, and feeling depressed.
It was this time that I decided to 'get off the pot' and find another oncologist. I have valued Dr. Lee's opinions and encouragement and I will dearly miss her staff in Columbia whom have been angels in some of my darkest days and worst experiences. The truth of the matter is, she is not a researcher and she is not plugged in to the clinical trials community. I want to be closer to that world and to be working with a doctor who knows I have already raised my hand to volunteer.
Other than a very scary evening in the ER a few weeks ago where nothing was wrong with me that covers the past three months. Imagine feeling kicked in your ribs and being unable to breathe without excrutiating pain. Now imagine ER doctors and nurses missing your veins with IVs, not seeing anything on x-rays or CT scans, and sending you home to consult with your oncologist because it's probably your cancer in your bones. Yeah. Well, I got over that somehow. Science and their bedside manner have a LOT to learn from faith and genuinely caring believers.
That pretty much catches us up to this past week...
Monday was the day I met with Dr. Naimish Pandya at the Greenbaum Center of University of Maryland. He's a researcher and a practicing onc. We went over my case history and he gave me his opinion. Going back on Xeloda and Avastin is not the best course of action. We know Xeloda needs help and we know Avastin makes me ill. With no improvement after two rounds of antibiotics, he feels my persistent cough is very likely mets bothering something higher in my respiratory system. He feels it's time to go to tier 2 which is an IV cocktail called FOLFIRI.
At the mention of this, I began to panic. I chased it away for the moment and continued the conversation. I am simply afraid of being alone, of quiet, when I've had to wear the infusion pump. It terrifies me... the haunting slow squeal e v e r y fourty three seconds It is tortuous.
But I knew he was making sense. Before I can think about trials, I need to have my disease back under control so that this cough does not grow any worse.
IV chemo means drips in my arm for long periods of time or finally getting my clogged port replaced. That happened yesterday, very suddenly, and though I am sore today I am glad it happened with more time to heal up before my first drip. That will probably be happening April 9th which will mercifully not trample my 7th wedding anniversary with Jody. She deserves so much better than we've been dished. :(
Compounding this week though was my boss... my old boss. She, um, does not communicate very effectively. Week before last she dropped a bomb on me that some govvie had eavesdropped on my conversation with a beancounter. Said beancounter had actually lied to an auditor but it was on my head to cover up for her. Nosey govvie got upset that I told her it was not my top priority to help her and the audit guy change some spreadsheet block from red to green. We passed our audit, and did a crapload of other stuff that got crammed by the snowstorm, yet my head was still desired upon a platter.
Tuesday old boss emails my teammate and I, on the same To: line, that she needs to speak with us, separately. Given the lack of communication, a direct snub of meeting my new boss a week ago (WTF?), and the plainly bass-ackwards way some of my govvie customers behave, I was sure I was getting a pink slip. I prepared for the worst and my well-being suffered for it. Wednesday morning I got a thanks for all the hard work and for being such a great guy, my (her) last day is Friday, and hey check your calendar because I signed you up for a cool training opportunity (as long as chemo doesn't keep me from it). Color me stunned.
Still in shock from that came an oh yeah, that's scheduled for tomorrow when I asked about my port being checked or replaced. For those of you who saw my status on facebook, last week was indeed, difficult.
Yesterday, the port procedure was strange. I thought I'd be knocked out, but they gave me something to make (that never made) me drowsy and I went through every step with the surgeon and his resident. Weird. Interesting and not scary, but weird. Today I'm sore but not nearly as traumatized and swollen as my first one. It's in roughly the same spot but into my jugular instead of the subclavia. That ought to have much better resistance to getting clogged up as early and as fully as the old port/location did.
Wish me luck... especially with the pump. I hope it is nothing like the ones I know.
I do apologize for the long delay. The holidays were only an excuse not to be writing. I just wasn't feeling very shary. I'm still not, but the pressure this week alone has my heartrate way too high though at least my blood pressure is okay.
My last batch of chemo was in early December and I was looking forward to the time off. I'd made some special gifts for kids I know after finding custom thumbdrives that looked like Clone Troopers. I filled them up with the old NPR Star Wars radio dramas and so far all the boys have really liked them. :)
Jody and I had my in-laws come for Christmas and I worked my magic to get premo seats and a special dinner with car service to see Young Frankenstein on stage at the Kennedy Center. It was a wonderful night not soon to be forgotten.
The new year arrived though and I was not feeling so great again. At the time I chalked it up to having caught something from my father in law whom was not perfectly well during his visit. Various remedies kept things at bay and I was able to make a scheduled CT scan and followup to learn that, on Xeloda alone last year, the disease had managed to progress... a little... but in my mind, it was pretty devastating. Dr. Lee proposed I go back on Xeloda with Avastin again but to taper it off so that I could tolerate it better. That would have started in February but I miised seeing Dr. Lee because of the weather.
The recordbreaking snowstorm came and had to be dealt with. I mustered what energy I could, as I could, and we eventually got ourselves dug out. We had help and we were thankful for it, but my cough was getting worse though nothing was ever coming up. I feared infection or pneumonia and went to my general doctor.
Two rounds of antibiotics made no improvement and the cough worsened to the point that it was triggering my stomach to want to be emptied. That has sucked and has only added to my fatigue, more weight loss, and feeling depressed.
It was this time that I decided to 'get off the pot' and find another oncologist. I have valued Dr. Lee's opinions and encouragement and I will dearly miss her staff in Columbia whom have been angels in some of my darkest days and worst experiences. The truth of the matter is, she is not a researcher and she is not plugged in to the clinical trials community. I want to be closer to that world and to be working with a doctor who knows I have already raised my hand to volunteer.
Other than a very scary evening in the ER a few weeks ago where nothing was wrong with me that covers the past three months. Imagine feeling kicked in your ribs and being unable to breathe without excrutiating pain. Now imagine ER doctors and nurses missing your veins with IVs, not seeing anything on x-rays or CT scans, and sending you home to consult with your oncologist because it's probably your cancer in your bones. Yeah. Well, I got over that somehow. Science and their bedside manner have a LOT to learn from faith and genuinely caring believers.
That pretty much catches us up to this past week...
Monday was the day I met with Dr. Naimish Pandya at the Greenbaum Center of University of Maryland. He's a researcher and a practicing onc. We went over my case history and he gave me his opinion. Going back on Xeloda and Avastin is not the best course of action. We know Xeloda needs help and we know Avastin makes me ill. With no improvement after two rounds of antibiotics, he feels my persistent cough is very likely mets bothering something higher in my respiratory system. He feels it's time to go to tier 2 which is an IV cocktail called FOLFIRI.
At the mention of this, I began to panic. I chased it away for the moment and continued the conversation. I am simply afraid of being alone, of quiet, when I've had to wear the infusion pump. It terrifies me... the haunting slow squeal e v e r y fourty three seconds It is tortuous.
But I knew he was making sense. Before I can think about trials, I need to have my disease back under control so that this cough does not grow any worse.
IV chemo means drips in my arm for long periods of time or finally getting my clogged port replaced. That happened yesterday, very suddenly, and though I am sore today I am glad it happened with more time to heal up before my first drip. That will probably be happening April 9th which will mercifully not trample my 7th wedding anniversary with Jody. She deserves so much better than we've been dished. :(
Compounding this week though was my boss... my old boss. She, um, does not communicate very effectively. Week before last she dropped a bomb on me that some govvie had eavesdropped on my conversation with a beancounter. Said beancounter had actually lied to an auditor but it was on my head to cover up for her. Nosey govvie got upset that I told her it was not my top priority to help her and the audit guy change some spreadsheet block from red to green. We passed our audit, and did a crapload of other stuff that got crammed by the snowstorm, yet my head was still desired upon a platter.
Tuesday old boss emails my teammate and I, on the same To: line, that she needs to speak with us, separately. Given the lack of communication, a direct snub of meeting my new boss a week ago (WTF?), and the plainly bass-ackwards way some of my govvie customers behave, I was sure I was getting a pink slip. I prepared for the worst and my well-being suffered for it. Wednesday morning I got a thanks for all the hard work and for being such a great guy, my (her) last day is Friday, and hey check your calendar because I signed you up for a cool training opportunity (as long as chemo doesn't keep me from it). Color me stunned.
Still in shock from that came an oh yeah, that's scheduled for tomorrow when I asked about my port being checked or replaced. For those of you who saw my status on facebook, last week was indeed, difficult.
Yesterday, the port procedure was strange. I thought I'd be knocked out, but they gave me something to make (that never made) me drowsy and I went through every step with the surgeon and his resident. Weird. Interesting and not scary, but weird. Today I'm sore but not nearly as traumatized and swollen as my first one. It's in roughly the same spot but into my jugular instead of the subclavia. That ought to have much better resistance to getting clogged up as early and as fully as the old port/location did.
Wish me luck... especially with the pump. I hope it is nothing like the ones I know.
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