That's the sound I make to help clear my chest.
Or at least as close to what I think it might looked like if I could only type it out.
I got it honestly though and I wouldn't have missed it. Joanie was home this past weekend and I was able to spend the afternoon with her. She was pretty sure she'd picked something up on the plane. By evening we were both sniffly with a little sore throat starting. When I got home, all hell broke loose and my sinuses congested in what felt like minutes. By morning, I was very sick.
The dry house hasn't helped, nor has the room humidifier I bought in desperation. I've missed work every day this week. And I had to reschedule the PET scan I was supposed to have today.
I've got two days on antibiotics to go and I hope they're enough. My biggest worry is that my immune system isn't up to the task of finishing this off.
Note of irony: it was a cold and a dry cough that I couldn't shake that got me in to my doctor that led to the x-ray and the original scan that revealed the cancer. Go figure!
Friday, December 19, 2008
Tuesday, December 2, 2008
port problems
Waaaay back when all this stuff first started picking up steam, Dr. Grasso signed me up to get a port. It would make IV chemotherapy much easier to administer saving me endless needle sticks in my arms. This sounded great back then because I have notoriously shy veins in my arms that have always been hard to find, much less hit.
It was supposed to be this great thing letting me get a needle in my chest (a lot less pain than you might think) and allow for both infusion of IV and medicine as well as blood draws. But then the insurance kicked in and for some truly stupid reason, blood draws and port accesses couldn't be done on the same day. Mind you the appliance makes both possible with just one visit... one needle... one insurance claim to pay. Nope, two visits for two procedures. And so Life went on. It still hurt less than getting stuck in my arm.
Until a few weeks ago that is. You see, the port needs to be accessed every four to six weeks whether it's being used for therapy or not. I'd been on Xeloda for so long, the only action my port was seeing was a routine access to flush it clean and keep it working. The last time it had been used in anger was for my reversal surgery way back in April. For my routine flush in at the end of October, things didn't go so well.
The needle went right in with only the skill Brenda has, but the saline flush did not give me the distinct scent of lemons I normally feel. It's a normal thing for me; I get this sensation of smelling lemons from the very back of my sinuses, forward. It's just how my brain processes the chemical signal of the flush and I've come to expect it. When things go wrong, I know it immediately.
Not only was there no lemony fresh scent, but there was a knot of pain and pressure, next to and above the port site. It happened again today. It feels as if the catheter tube from the port has been blocked and blown up like a balloon though I do not think it is that flexible. It hurts and it feels very very wrong.
So, Dr. Grasso got a call and a message to see about possibly bringing me in to see if the port is still in good shape. This almost definitely means a trip to the hospital where no one is as skilled at hitting the port as Brenda. It may also mean another outpatient surgery that I'd rather not go through except to get the port taken out.
And that may be a possibility too. If the PET scan on the 19th comes back looking good, chemo may be off the menu and I won't need the port. I already give regular blood samples for tests from my arms and hands so the port would be unnecessary. I'm getting ahead of myself but I admit it would be nice.
Meanwhile, any of you locals who know personal fitness trainers, drop me a line. I'd like to find someone whom can help me out while being careful in shaping up my abdominal muscles. Someone with experience training chemo patients would be awesome.
It was supposed to be this great thing letting me get a needle in my chest (a lot less pain than you might think) and allow for both infusion of IV and medicine as well as blood draws. But then the insurance kicked in and for some truly stupid reason, blood draws and port accesses couldn't be done on the same day. Mind you the appliance makes both possible with just one visit... one needle... one insurance claim to pay. Nope, two visits for two procedures. And so Life went on. It still hurt less than getting stuck in my arm.
Until a few weeks ago that is. You see, the port needs to be accessed every four to six weeks whether it's being used for therapy or not. I'd been on Xeloda for so long, the only action my port was seeing was a routine access to flush it clean and keep it working. The last time it had been used in anger was for my reversal surgery way back in April. For my routine flush in at the end of October, things didn't go so well.
The needle went right in with only the skill Brenda has, but the saline flush did not give me the distinct scent of lemons I normally feel. It's a normal thing for me; I get this sensation of smelling lemons from the very back of my sinuses, forward. It's just how my brain processes the chemical signal of the flush and I've come to expect it. When things go wrong, I know it immediately.
Not only was there no lemony fresh scent, but there was a knot of pain and pressure, next to and above the port site. It happened again today. It feels as if the catheter tube from the port has been blocked and blown up like a balloon though I do not think it is that flexible. It hurts and it feels very very wrong.
So, Dr. Grasso got a call and a message to see about possibly bringing me in to see if the port is still in good shape. This almost definitely means a trip to the hospital where no one is as skilled at hitting the port as Brenda. It may also mean another outpatient surgery that I'd rather not go through except to get the port taken out.
And that may be a possibility too. If the PET scan on the 19th comes back looking good, chemo may be off the menu and I won't need the port. I already give regular blood samples for tests from my arms and hands so the port would be unnecessary. I'm getting ahead of myself but I admit it would be nice.
Meanwhile, any of you locals who know personal fitness trainers, drop me a line. I'd like to find someone whom can help me out while being careful in shaping up my abdominal muscles. Someone with experience training chemo patients would be awesome.
Wednesday, November 26, 2008
Best Gifts Ever
It's that time of the year... and I really hate being asked for a gift list. ;)
If someone sees something they want me to have, I will appreciate it. Please don't ask me to tell you what to buy. To me that's just you saying you don't want to think of me more than you want to cross my name off of a list. It truly is the thought that counts to me.
Having said that, I've received gifts that have left their mark on me.
The first was a toy I still have after nearly thirty years gone by. My Dad was in the Air Force when I was growing up. We were coming back stateside from Japan just before Christmas in 1979. All of our stuff had been crated up and was taking a slow boat while we were living out of suitcases and holing up with my grandparents as Dad got out of the service. Mom and Dad had known our move home would interrupt Christmas and had planned ahead mailing toys home ahead of us... this was back when the mail could take weeks.
Under the tree that Christmas was the coolest toy ever; a remote controlled R2-D2! There was an American rc R2, but it only had two legs and was cloudy white plastic with a dull silver dome head; totally lame by comparison. My plucky little droid is -still- bright white with dark blue stickers and a mirror-chrome top. He's got -three- legs and his head swivels when he rolls around stopping on command and -shooting- tiddlywink discs! I still have him in his original box. A few years ago I had him appraised at $1400 for a Discovery Channel show but, to me, he's priceless because Mom and Dad had gone to so much trouble to make sure I had him for Christmas that year.
The second gift was a Snap-on 1/2" breaker and a tin can with some sockets in it. When I opened them, I did not understand what they were. Obviously they were tools, but they were clearly worn not to mention they were sizes I already had. Then my folks told me where they'd come from.
Officially, my grandfather died on my 21st birthday. He'd had a stroke several weeks prior and the family rushed to Florida from all corners, including my aunt who had been deployed to Riyahd during Desert Storm. Grampa had been looking us in the eye and able to blink yes and no but was otherwise completely disabled by the stroke... it was heartbreaking. My grandmother told him all their kids were there and she would be okay and when she told him he could stop fighting, he stopped responding to us. I feel that was when he passed despite the agony of the bureaucracy of stopping life support; which he'd been put on with complete disregard for the papers he had signed himself when he was originally admitted for a minor stroke. The major stroke happened in his hospital room.
My grandfathers' tools were supposed to have been split up and passed on to each of his grandsons; a fact I never knew. It had been hidden from me because my uncle had run completely roughshod over his parents home, his own mother's home, taking things before any of Grampas' wishes could be carried out. This heavily damaged my uncle's relationship with his sisters and, to this day, is still a tender subject. My uncle pawned nearly all of the tools I and my cousins were supposed to receive.
Somehow my aunt and her husband wound up with the breaker and the sockets I was holding in my hands. Years had gone by before they came across the tools in a stateside move of their own (Air Force too). They felt these few tools ought to go to me. As my mom told me who they'd belonged to, how they'd escaped the hands of my uncle, and that they were supposed to have been mine many many years ago, I broke down.
Those old sockets and the patina'd breaker bar now hold a very very special spot in my toolbox. They've turned fasteners on my and my friends cars now and made a few trips to different paddocks with me. I think of my grandfather every time I see them and I can feel he is happy knowing they're finally in my hands.
Here is a picture of an Artoo like mine. Give me some time and you may get to see those tools in use on one of your cars.
If someone sees something they want me to have, I will appreciate it. Please don't ask me to tell you what to buy. To me that's just you saying you don't want to think of me more than you want to cross my name off of a list. It truly is the thought that counts to me.
Having said that, I've received gifts that have left their mark on me.
The first was a toy I still have after nearly thirty years gone by. My Dad was in the Air Force when I was growing up. We were coming back stateside from Japan just before Christmas in 1979. All of our stuff had been crated up and was taking a slow boat while we were living out of suitcases and holing up with my grandparents as Dad got out of the service. Mom and Dad had known our move home would interrupt Christmas and had planned ahead mailing toys home ahead of us... this was back when the mail could take weeks.
Under the tree that Christmas was the coolest toy ever; a remote controlled R2-D2! There was an American rc R2, but it only had two legs and was cloudy white plastic with a dull silver dome head; totally lame by comparison. My plucky little droid is -still- bright white with dark blue stickers and a mirror-chrome top. He's got -three- legs and his head swivels when he rolls around stopping on command and -shooting- tiddlywink discs! I still have him in his original box. A few years ago I had him appraised at $1400 for a Discovery Channel show but, to me, he's priceless because Mom and Dad had gone to so much trouble to make sure I had him for Christmas that year.
The second gift was a Snap-on 1/2" breaker and a tin can with some sockets in it. When I opened them, I did not understand what they were. Obviously they were tools, but they were clearly worn not to mention they were sizes I already had. Then my folks told me where they'd come from.
Officially, my grandfather died on my 21st birthday. He'd had a stroke several weeks prior and the family rushed to Florida from all corners, including my aunt who had been deployed to Riyahd during Desert Storm. Grampa had been looking us in the eye and able to blink yes and no but was otherwise completely disabled by the stroke... it was heartbreaking. My grandmother told him all their kids were there and she would be okay and when she told him he could stop fighting, he stopped responding to us. I feel that was when he passed despite the agony of the bureaucracy of stopping life support; which he'd been put on with complete disregard for the papers he had signed himself when he was originally admitted for a minor stroke. The major stroke happened in his hospital room.
My grandfathers' tools were supposed to have been split up and passed on to each of his grandsons; a fact I never knew. It had been hidden from me because my uncle had run completely roughshod over his parents home, his own mother's home, taking things before any of Grampas' wishes could be carried out. This heavily damaged my uncle's relationship with his sisters and, to this day, is still a tender subject. My uncle pawned nearly all of the tools I and my cousins were supposed to receive.
Somehow my aunt and her husband wound up with the breaker and the sockets I was holding in my hands. Years had gone by before they came across the tools in a stateside move of their own (Air Force too). They felt these few tools ought to go to me. As my mom told me who they'd belonged to, how they'd escaped the hands of my uncle, and that they were supposed to have been mine many many years ago, I broke down.
Those old sockets and the patina'd breaker bar now hold a very very special spot in my toolbox. They've turned fasteners on my and my friends cars now and made a few trips to different paddocks with me. I think of my grandfather every time I see them and I can feel he is happy knowing they're finally in my hands.
Here is a picture of an Artoo like mine. Give me some time and you may get to see those tools in use on one of your cars.
Tuesday, November 25, 2008
quick and painless... until the blood draw that is
Dr. Lee was a bit late this morning, but I did not mind. I gave her a quick update and she agreed I would probably heal up more fully now without the chemo coursing through me being reinforced every other week. I'd had a rough weekend, worst night in about a month. I'm honestly a lot more worn than I want to admit, but I am feeling better. When I asked about getting into a fitness regimen, Dr. Lee saw no problem.
She deferred to Dr. Grasso specifically for any abdominal muscle training. I spoke with him this evening and he suggested I avoid overly stressing my abs and possibly invest in an ab belt for extra support. When I mentioned I may try finding a trainer whom has worked with recovering surgical patients, he thought that would be a good idea. So, that'll be the plan and hopefully my reduced hours will help. Dr. Grasso asked after my bimmer and told me he'd been in surgery today with another doctor working on a 2002. Car guy docs rule!
I'm in a minor holding pattern waiting for a referral for a PET scan on Dec 19th. I'm going to stay on top of this referral and not let it get goofed around with some typo or rejected for the wrong mailing address or, as luck would just have to have it, some inattention because of the holiday this week.
Which brings me to Thanksgiving. Like every year I have a lot to be thankful for if I just stop and think about it. Which is my encouragement to you. Take a little time out and consider your own situation. :)
She deferred to Dr. Grasso specifically for any abdominal muscle training. I spoke with him this evening and he suggested I avoid overly stressing my abs and possibly invest in an ab belt for extra support. When I mentioned I may try finding a trainer whom has worked with recovering surgical patients, he thought that would be a good idea. So, that'll be the plan and hopefully my reduced hours will help. Dr. Grasso asked after my bimmer and told me he'd been in surgery today with another doctor working on a 2002. Car guy docs rule!
I'm in a minor holding pattern waiting for a referral for a PET scan on Dec 19th. I'm going to stay on top of this referral and not let it get goofed around with some typo or rejected for the wrong mailing address or, as luck would just have to have it, some inattention because of the holiday this week.
Which brings me to Thanksgiving. Like every year I have a lot to be thankful for if I just stop and think about it. Which is my encouragement to you. Take a little time out and consider your own situation. :)
off to the oncologist
I'll be jumping in the shower shortly and off to see Dr. Lee first thing this morning. Chemo has come to an end so I anticipate we will be scheduling a PET scan to see how our work has paid off.
I'll also be asking her advice on exercising, specifically strength training. I've lost a lot of weight and, as you may have heard me say, I would like to capitalize on it. But I've lost a lot of strength too... and I didn't start off with a great deal. Now that there's no chemo going in, I want to know if it's okay to try building muscle even as the chemo tapers off.
Wish me luck!
I'll also be asking her advice on exercising, specifically strength training. I've lost a lot of weight and, as you may have heard me say, I would like to capitalize on it. But I've lost a lot of strength too... and I didn't start off with a great deal. Now that there's no chemo going in, I want to know if it's okay to try building muscle even as the chemo tapers off.
Wish me luck!
Wednesday, November 19, 2008
breathe...
For some reason, we instinctively hold our breath when something big approaches. It's second nature; a reaction to fear. I wish I had a dollar for every instructor who has told me to breathe or even for every time I've caught myself tensing up, forgetting to do what is guaranteed to keep my head clear and my actions smooth.
Just gotta breathe.
When I don't, I feel it. Often just a bit too late and I knock myself off my rhythm. I brake too soon, turn in too early, knot myself up and make it hurt worse, or psych myself into breaking down. Such was the case Saturday evening, and I've been paying for it since then. Less and less, thankfully, but I can still look back and see where holding my breath put me off my game.
This was supposed to be a good thing. Chemo ended Saturday evening. But I'd held my breath and turned it into this emotional mountain to climb that has upset me for days all because I didn't just swallow those last four pills instead of fixating on them.
So, lesson learned again. I never was the kid who really got it that the burner was hot the first time I touched it. I've always had to burn my hand a second time just to make sure. I need to just let the chemo go now and not get all worked up over my next meet with Dr. Lee. Yes, we'll talk about what happens next, but I do myself no favors trying to hold my breath until then.
Just gotta breathe.
When I don't, I feel it. Often just a bit too late and I knock myself off my rhythm. I brake too soon, turn in too early, knot myself up and make it hurt worse, or psych myself into breaking down. Such was the case Saturday evening, and I've been paying for it since then. Less and less, thankfully, but I can still look back and see where holding my breath put me off my game.
This was supposed to be a good thing. Chemo ended Saturday evening. But I'd held my breath and turned it into this emotional mountain to climb that has upset me for days all because I didn't just swallow those last four pills instead of fixating on them.
So, lesson learned again. I never was the kid who really got it that the burner was hot the first time I touched it. I've always had to burn my hand a second time just to make sure. I need to just let the chemo go now and not get all worked up over my next meet with Dr. Lee. Yes, we'll talk about what happens next, but I do myself no favors trying to hold my breath until then.
Wednesday, November 12, 2008
okay now, THIS is cool
Jody and I just had an impromptu video chat through Google and Meebo. With the teeny little webcam and microscopic microphones in my laptop she could see and hear me in real time! So this is that change Obama was all on about! ;)
Pshh... it's probably about time I got up to speed on video messaging. Jody got me a webcam for the desktop last Christmas but I never really put it to use. Who am I going to video chat with? Maybe webcams will appear in some other stockings this year... hehehehe
If you have one and you see me logged into Gmail, chat me up!
I am regrettably pleased to report I am well into my final week of chemo. I had to outline this fact to a few people at work today as Monday found me home, ill. With no more classes in the lab until February, Tuesday being a holiday, and no pressing needs I wallowed one more time (last time?) in the ick and stayed home. No sooner had I hung up the phone after letting my boss know, the phone rang again and there was a customer at the lab needing some machines set up...
I now know I'm going to be okay with the new job. Over the phone, I walked him through the setup and asked him to call me if anything did not work. I pictured each load taking a few minutes to finish and was pretty sure I'd stepped him through everything just right. 'Called him after about 15-20 minutes and all was right with that world. Yeah, I think I'll do just fine. ;)
Pshh... it's probably about time I got up to speed on video messaging. Jody got me a webcam for the desktop last Christmas but I never really put it to use. Who am I going to video chat with? Maybe webcams will appear in some other stockings this year... hehehehe
If you have one and you see me logged into Gmail, chat me up!
I am regrettably pleased to report I am well into my final week of chemo. I had to outline this fact to a few people at work today as Monday found me home, ill. With no more classes in the lab until February, Tuesday being a holiday, and no pressing needs I wallowed one more time (last time?) in the ick and stayed home. No sooner had I hung up the phone after letting my boss know, the phone rang again and there was a customer at the lab needing some machines set up...
I now know I'm going to be okay with the new job. Over the phone, I walked him through the setup and asked him to call me if anything did not work. I pictured each load taking a few minutes to finish and was pretty sure I'd stepped him through everything just right. 'Called him after about 15-20 minutes and all was right with that world. Yeah, I think I'll do just fine. ;)
Thursday, November 6, 2008
doing okay, busy at work
As requested, I am indeed doing okay and I am, happily, busy at work.
Unfortunately, I've also been busy at home too trying to make sense of a hiccup in my long-term disability insurance. To the point, eveything is straightened out but I am not getting what I thought I had purchased.
It was sad to cross over from short-term disability way back in February when the six month anniversary passed. The indignity of applying for social security benefits through a subcontracted nagging service was that much worse. They drilled me every few days over the phone and every week or so with paperwork but I just took it on as part of my new "job" of recovering and getting well and vowed to do my best. Fast forward through some rough times and I thought when I was finally well enough to go back to my day job, I would see more money coming into the bank account. What I didn't realize was the benefits would shrink relative to any money I earned.
Checks had been arriving for months now and the new number was predictable. I abided by my contract and reported my part-time earnings and the benefit check didn't change. I thought it might, but when it didn't I figured that was the other half of my paycheck; the other 20 hours a week my doctor has me resisting.
When September passed without a check, I didn't worry too much. By the time my birthday passed two weeks into October and I hadn't received a return call, I did begin to worry. After figuring out CIGNA had chosen to just stop paying for the flimsiest reason they could find, I went from worried to angry.
My case manager vanished. She may have quit or been fired, croaked dead or been abducted by aliens and forced onto a Elvis diet. She just plain disappeared. Her voicemail still works and her email has never bounced leaving me to think she was getting my pay/leave statements just like normal. But she wasn't and therefore CIGNA wasn't. After weeks with no check, I persevered through their ridiculous robo-phone system to get ahold of her boss who promptly denounced the break in communication as my fault giving them every right to stop paying benefits. Pardon my French, but this pissed me off. I wasn't the one whom had stopped talking, they were. To blame me and use it as an excuse to stop paying was just plain stupid.
You may be able to imagine my reaction. ;)
I bled them for information to get my account current but I was totally stunned to learn my adjusted benefit was more than a thousand dollars less. I could not figure out why. I know I can be thick sometimes, but a grand? For weeks I pored over their spreadsheets trying to make heads or tails of their math. I was certain they'd made a mistake because I piad for coverage to make up half my paycheck; half my gross paycheck! Every month I'd not been working, the benefit arrived fine. The month I started working, fine. The second month? Nothing. Got that straightened out and then the check was a fraction of what I was expecting. Feeling sick, routinely crashing, and being reminded of my age weren't helping either. In the end, I prayed for patience and understanding because I needed this to be over with so I could either adjust for the smaller amount, or get my account settled and back onto the check amounts I'd been expecting.
Now don't go thinking we're having budget problems. Far from it. Jody and I immediately scaled back the budget as soon as we found out I was sick because we did not know what this ordeal would cost. Mercifully, the out of pocket expenses haven't been that bad though I now understand the concept of those pre-tax flexible spending accounts. Taxes this year are going to be interesting... and that's without Obama. ;)
However, I cannot ever earn more than 100% of my old pay; what I earned when I got sick. Some months it will be smaller because I bring home weekly paychecks; twice a year there will be months with five while all the others will only be four. It was very bad timing that September was that first month for me coinciding with my old CIGNA rep going Houdini on me. I just didn't realize my coverage isn't actually for the other half of my paycheck if I'm able to work a little.
Honestly. What do people do who are too sick to keep up with these things?
None of this has really helped my stamina either. On the nights I can rest, I am able to wake up nice and early, have Aaron drive me to his school so he gets some drivers education time, punch in half a day in the lab trying to learn the new job, then collapse or completely crash at home. It's compounding the effects of the chemo with, thank God, ends after next week's final round of poison. Only 56 more pills to go starting Sunday... I think I'll cry when the last ones go down.
Please, oh please, let them have done their job. I don't look forward to the sore muscles after another PET scan or the prep for another colonoscopy, but they will be worth it if someone can tell me they don't see anything any more.
Okay maybe I'll cry now too. :(
Unfortunately, I've also been busy at home too trying to make sense of a hiccup in my long-term disability insurance. To the point, eveything is straightened out but I am not getting what I thought I had purchased.
It was sad to cross over from short-term disability way back in February when the six month anniversary passed. The indignity of applying for social security benefits through a subcontracted nagging service was that much worse. They drilled me every few days over the phone and every week or so with paperwork but I just took it on as part of my new "job" of recovering and getting well and vowed to do my best. Fast forward through some rough times and I thought when I was finally well enough to go back to my day job, I would see more money coming into the bank account. What I didn't realize was the benefits would shrink relative to any money I earned.
Checks had been arriving for months now and the new number was predictable. I abided by my contract and reported my part-time earnings and the benefit check didn't change. I thought it might, but when it didn't I figured that was the other half of my paycheck; the other 20 hours a week my doctor has me resisting.
When September passed without a check, I didn't worry too much. By the time my birthday passed two weeks into October and I hadn't received a return call, I did begin to worry. After figuring out CIGNA had chosen to just stop paying for the flimsiest reason they could find, I went from worried to angry.
My case manager vanished. She may have quit or been fired, croaked dead or been abducted by aliens and forced onto a Elvis diet. She just plain disappeared. Her voicemail still works and her email has never bounced leaving me to think she was getting my pay/leave statements just like normal. But she wasn't and therefore CIGNA wasn't. After weeks with no check, I persevered through their ridiculous robo-phone system to get ahold of her boss who promptly denounced the break in communication as my fault giving them every right to stop paying benefits. Pardon my French, but this pissed me off. I wasn't the one whom had stopped talking, they were. To blame me and use it as an excuse to stop paying was just plain stupid.
You may be able to imagine my reaction. ;)
I bled them for information to get my account current but I was totally stunned to learn my adjusted benefit was more than a thousand dollars less. I could not figure out why. I know I can be thick sometimes, but a grand? For weeks I pored over their spreadsheets trying to make heads or tails of their math. I was certain they'd made a mistake because I piad for coverage to make up half my paycheck; half my gross paycheck! Every month I'd not been working, the benefit arrived fine. The month I started working, fine. The second month? Nothing. Got that straightened out and then the check was a fraction of what I was expecting. Feeling sick, routinely crashing, and being reminded of my age weren't helping either. In the end, I prayed for patience and understanding because I needed this to be over with so I could either adjust for the smaller amount, or get my account settled and back onto the check amounts I'd been expecting.
Now don't go thinking we're having budget problems. Far from it. Jody and I immediately scaled back the budget as soon as we found out I was sick because we did not know what this ordeal would cost. Mercifully, the out of pocket expenses haven't been that bad though I now understand the concept of those pre-tax flexible spending accounts. Taxes this year are going to be interesting... and that's without Obama. ;)
However, I cannot ever earn more than 100% of my old pay; what I earned when I got sick. Some months it will be smaller because I bring home weekly paychecks; twice a year there will be months with five while all the others will only be four. It was very bad timing that September was that first month for me coinciding with my old CIGNA rep going Houdini on me. I just didn't realize my coverage isn't actually for the other half of my paycheck if I'm able to work a little.
Honestly. What do people do who are too sick to keep up with these things?
None of this has really helped my stamina either. On the nights I can rest, I am able to wake up nice and early, have Aaron drive me to his school so he gets some drivers education time, punch in half a day in the lab trying to learn the new job, then collapse or completely crash at home. It's compounding the effects of the chemo with, thank God, ends after next week's final round of poison. Only 56 more pills to go starting Sunday... I think I'll cry when the last ones go down.
Please, oh please, let them have done their job. I don't look forward to the sore muscles after another PET scan or the prep for another colonoscopy, but they will be worth it if someone can tell me they don't see anything any more.
Okay maybe I'll cry now too. :(
Friday, September 19, 2008
vivendo discimus
I don't want to write this post. Really. It's been better than a week since I actually realized I did not want to write this and it's been nagging me ever since. I'm ashamed of my reason and I'm afraid I will alienate some of my friends but it is my responsibility to say what I'm about to say no matter how afraid I am to do it.
This started off as a more convenient way for me to share what was happening to me. As I said then, managing multiple email chains would have been difficult at best and impossible when I got worse as expected. Now it's a bit of a sounding board and a punching bag for me to just get some things out. This has been needing to come out for a while now and, in struggling with the problem itself, I'm struggling to have tried keeping it to myself out of fear of disappointing anyone else.
Realistically, I am doing much better that just a few months ago. I'm still having troubles from time to time and they're still frightening me too easily into doubting I can do much at all. I'm fighting to do fun things like fly away for a racer/driver coaching seminar, or spend a day at the track, or even just muster up enough within me to enjoy dinner with friends or a movie with Jody. As anxious as I am to get back to meaningful work, I am scared about what next Monday brings me in terms of balancing my ability to be effective with the need to spend more time than others in the bathroom. It's embarrassing and it crushes my spirit at times.
Which leads me to my knees, sometimes literally but most times in just a quiet desperation. I'm worn out. I don't know how much more I have left to wear away. I feel like the brakes on my car; able to get by but not without a bit of noise near the end squealing a little louder for attention.
And the trouble there is, the reason I am afraid to have said more to anyone other than Jody or my family, I'm not feeling like this is doing anyone any good. I clearly remember praying and, though scared, acknowledging my faith that God wouldn't have allowed me to be thrown anything I could not handle. I prayed that my faith would increase because the challenge certainly would. Through radiation and chemo and surgery and chemo and surgery again I felt buoyed.
And then chemo started again and the second round destroyed me. My hope drained away faster than ever. All that while, little Brie lay in the hospital and I could not visit her because I had poison escaping through my skin. I prayed she would be okay and was thankful for all of the miracles that seemed to have put her in the absolute best hands she couldn't have possibly planned or even paid to be more right. And my hope was obliterated when she died. Though I've been coping with that and am still finding acceptance, there has been an insidious want inside me that has aggravated the anger I have over my own disease and made me arrogantly call it a need.
It's been a desire, a temptation really, to want to know why. Why has this happened to me? At the beginning I had a real sensation that this was a test of my faith and being around others and sharing through the blog would be a way God would show Himself to others. And that gave me hope at the time. A year later I'm tearing myself apart wanting my part in the decision of whether or not all of this, me suffering with cancer and life afterward, is worth it... worth going through if it's just to be an example to others.
I'm just starting to scratch the surface of that and this post, as much as I'm afraid to make it, is what I think has to come. You see, I'm not perfect. My faith and what I believe do not make me any better nor worse than anyone else. They do not protect me from disease or hard times and do not make Life all teddy bears and rainbows. And just as Life can be tough for me, Life is also tough for everyone else. Which brings me to one fo the requirements of being a faithful person... this... relating to other people and sharing my experience... even when it's been hard and I feel like I'm failing to be a good example of how a believer faces rough times in Life.
I was reading a thread on a message board in a discussion of whether or not Creationism or Intelligent Design, the belief that the universe was created by God, should or should not be taught in public schools. The argument was familiar; that evolution was the only scientifically provable angle and should be the only curriculum taught to today's children as opposed to an unproven fairy tale of sorts.
I added my own personal take on the debate by saying this, "Personally, I revere science, the scientific method, and curiosity as a motivation for greater knowledge and understanding. I also happen to believe this quality was a gift from God. My faith is reinforced every time the tiniest new discovery is made. There is no scientific fact that will shake my faith. There is no scripture that can deny me the wonder, the enjoyment of discovery. I've got cancer. If there is an experience in life that could destroy my faith or express my disappointment in science, this is it."
For the record, it was in an off-topic forum of one of the BMW boards I read. ;)
What has shaken my faith though is this overwhelming wish to know why this has happened. I'm starting to realize that I may have gotten it right at the beginning and it's happened because it's supposed to speak to someone around me. What is it supposed to say? I'm not entirely sure, but I think part of it may be simply to demonstrate that a faithful man is not free of anything good or bad in Life. I think it may also be saying belief is not some easy choice for the lazy or the unintelligent man.
And the more I think about that, the more I'm okay with it because helping other people is something I think we all feel good about. I know it satisfies me even if I've been a little too anxious to get back to work; the last place I really felt I was being helpful. So while I'm afraid to admit I'm struggling in my faith, I will anyway because it may be helping you.
And to me, that is worth it.
This started off as a more convenient way for me to share what was happening to me. As I said then, managing multiple email chains would have been difficult at best and impossible when I got worse as expected. Now it's a bit of a sounding board and a punching bag for me to just get some things out. This has been needing to come out for a while now and, in struggling with the problem itself, I'm struggling to have tried keeping it to myself out of fear of disappointing anyone else.
Realistically, I am doing much better that just a few months ago. I'm still having troubles from time to time and they're still frightening me too easily into doubting I can do much at all. I'm fighting to do fun things like fly away for a racer/driver coaching seminar, or spend a day at the track, or even just muster up enough within me to enjoy dinner with friends or a movie with Jody. As anxious as I am to get back to meaningful work, I am scared about what next Monday brings me in terms of balancing my ability to be effective with the need to spend more time than others in the bathroom. It's embarrassing and it crushes my spirit at times.
Which leads me to my knees, sometimes literally but most times in just a quiet desperation. I'm worn out. I don't know how much more I have left to wear away. I feel like the brakes on my car; able to get by but not without a bit of noise near the end squealing a little louder for attention.
And the trouble there is, the reason I am afraid to have said more to anyone other than Jody or my family, I'm not feeling like this is doing anyone any good. I clearly remember praying and, though scared, acknowledging my faith that God wouldn't have allowed me to be thrown anything I could not handle. I prayed that my faith would increase because the challenge certainly would. Through radiation and chemo and surgery and chemo and surgery again I felt buoyed.
And then chemo started again and the second round destroyed me. My hope drained away faster than ever. All that while, little Brie lay in the hospital and I could not visit her because I had poison escaping through my skin. I prayed she would be okay and was thankful for all of the miracles that seemed to have put her in the absolute best hands she couldn't have possibly planned or even paid to be more right. And my hope was obliterated when she died. Though I've been coping with that and am still finding acceptance, there has been an insidious want inside me that has aggravated the anger I have over my own disease and made me arrogantly call it a need.
It's been a desire, a temptation really, to want to know why. Why has this happened to me? At the beginning I had a real sensation that this was a test of my faith and being around others and sharing through the blog would be a way God would show Himself to others. And that gave me hope at the time. A year later I'm tearing myself apart wanting my part in the decision of whether or not all of this, me suffering with cancer and life afterward, is worth it... worth going through if it's just to be an example to others.
I'm just starting to scratch the surface of that and this post, as much as I'm afraid to make it, is what I think has to come. You see, I'm not perfect. My faith and what I believe do not make me any better nor worse than anyone else. They do not protect me from disease or hard times and do not make Life all teddy bears and rainbows. And just as Life can be tough for me, Life is also tough for everyone else. Which brings me to one fo the requirements of being a faithful person... this... relating to other people and sharing my experience... even when it's been hard and I feel like I'm failing to be a good example of how a believer faces rough times in Life.
I was reading a thread on a message board in a discussion of whether or not Creationism or Intelligent Design, the belief that the universe was created by God, should or should not be taught in public schools. The argument was familiar; that evolution was the only scientifically provable angle and should be the only curriculum taught to today's children as opposed to an unproven fairy tale of sorts.
I added my own personal take on the debate by saying this, "Personally, I revere science, the scientific method, and curiosity as a motivation for greater knowledge and understanding. I also happen to believe this quality was a gift from God. My faith is reinforced every time the tiniest new discovery is made. There is no scientific fact that will shake my faith. There is no scripture that can deny me the wonder, the enjoyment of discovery. I've got cancer. If there is an experience in life that could destroy my faith or express my disappointment in science, this is it."
For the record, it was in an off-topic forum of one of the BMW boards I read. ;)
What has shaken my faith though is this overwhelming wish to know why this has happened. I'm starting to realize that I may have gotten it right at the beginning and it's happened because it's supposed to speak to someone around me. What is it supposed to say? I'm not entirely sure, but I think part of it may be simply to demonstrate that a faithful man is not free of anything good or bad in Life. I think it may also be saying belief is not some easy choice for the lazy or the unintelligent man.
And the more I think about that, the more I'm okay with it because helping other people is something I think we all feel good about. I know it satisfies me even if I've been a little too anxious to get back to work; the last place I really felt I was being helpful. So while I'm afraid to admit I'm struggling in my faith, I will anyway because it may be helping you.
And to me, that is worth it.
Wednesday, September 10, 2008
ch..ch..ch..changes
I've had a bit of a rocky few days and I wanted to make some changes. Obviously the blog template changed, but I've got a post brewing that I'm both anxious and hesitant to put up here. God and I have been butting heads and I need to get some things out. For all I know, it's one of you that needs this more than me, but I'm going to do my part.
Meanwhile, I've added a new little picture over to the side linked to the Stand Up to Cancer movement. I missed the television program last Friday, but I'm going to try to find it online. I don't know much about the effort, but given the name I'm eager to find out more. Please click through and check it out for yourself. Because you know me, cancer has touched your life now. Sorry 'bout that... ;)
Meanwhile, I've added a new little picture over to the side linked to the Stand Up to Cancer movement. I missed the television program last Friday, but I'm going to try to find it online. I don't know much about the effort, but given the name I'm eager to find out more. Please click through and check it out for yourself. Because you know me, cancer has touched your life now. Sorry 'bout that... ;)
Tuesday, September 9, 2008
and home again
I made it home from Durham without melting in the rain. The seminar was a fantastic experience and though I've still got butterflies when thinking about instructing, I now have a tone of ideas, techniques, and advice to draw from when I finally make that jump. Day two was just as good and sent me home with a list of bullets to apply to my own driving once I make it back to the track.
The flights home were uneventful except for another twinge in my abs (same one) that I'd otherwise been able to avoid all weekend. I tried reaching back over my head to raise the headrest of the airplane seat and -zing-. That set off a wave of anxiety and I must have looked like a ghost. I think I saw myself turn white. It didn't help that I was dog tired... or maybe it did. I got home around midnight and just crashed. I'm still glad I went instead of chickening out.
Hopefully this week will find me reunited with my badge and back to work work (as opposed to empty cube "work"). I was still pretty tired when I awoke yesterday morning so I logged into my email from home to see if the badge process had finished. Nope, not yet, so the decision to take a floating holiday was pretty easy. My boss warned me that I have to use them up before the end of the year. ;)
Jody telecommuted too and around mid-afternoon we both wanted to get out and do something. How about a movie? "I'd like to see Mamma Mia!" "Okay, I guess..." I enjoyed it after all and now I have ABA stuck in my head. I will burn a CD this morning and pop it into the car today so it's not a bad thing. :)
The flights home were uneventful except for another twinge in my abs (same one) that I'd otherwise been able to avoid all weekend. I tried reaching back over my head to raise the headrest of the airplane seat and -zing-. That set off a wave of anxiety and I must have looked like a ghost. I think I saw myself turn white. It didn't help that I was dog tired... or maybe it did. I got home around midnight and just crashed. I'm still glad I went instead of chickening out.
Hopefully this week will find me reunited with my badge and back to work work (as opposed to empty cube "work"). I was still pretty tired when I awoke yesterday morning so I logged into my email from home to see if the badge process had finished. Nope, not yet, so the decision to take a floating holiday was pretty easy. My boss warned me that I have to use them up before the end of the year. ;)
Jody telecommuted too and around mid-afternoon we both wanted to get out and do something. How about a movie? "I'd like to see Mamma Mia!" "Okay, I guess..." I enjoyed it after all and now I have ABA stuck in my head. I will burn a CD this morning and pop it into the car today so it's not a bad thing. :)
Saturday, September 6, 2008
How to test your faith
This is a weather.com image of the Raleigh/Durham area right now:
Yeah, that's the eye of hurricane Hanna just east of Fayetteville.
Why Raleigh/Durham? Well, that's where I'm at right now, posting from my laptop in the very nice Sheraton Imperial. I'm here for a driver coaching seminar being given by Ross Bentley, author of the Speed Secrets books.
So yeah, I've flown away from home, into a hurricane, by myself, just shy of two weeks after being in the hospital, anxious as all get out about these weird sharp muscle pains under my right arm (ribs) and below my belt. I know they're muscle pains because they only hurt if I'm reaching or stabilizing myself... so I'm moving kinda carefully as I go. And praying constantly.
God got me through the anxiety of getting on the plane and got me here just as the storm arrived. He blessed me with an easy checkin and some very good rest before treating me to a visit with wonderful friends, the Valentines, whom moved here earlier this year. We had a great dinner at Ole Time Barbecue that Brett had seen on Road Tasted with the Neelys on the Food Network channel. It was excellent. :d
Good nights' sleep capped off the big day and now I'm up getting ready to go learn how to teach drivers to drive fast. Oh, and safe too. :D
I am very thankful for the smooth sailing so far and I know I'll be okay going home... even through the tail end of a hurricane.
Yeah, that's the eye of hurricane Hanna just east of Fayetteville.
Why Raleigh/Durham? Well, that's where I'm at right now, posting from my laptop in the very nice Sheraton Imperial. I'm here for a driver coaching seminar being given by Ross Bentley, author of the Speed Secrets books.
So yeah, I've flown away from home, into a hurricane, by myself, just shy of two weeks after being in the hospital, anxious as all get out about these weird sharp muscle pains under my right arm (ribs) and below my belt. I know they're muscle pains because they only hurt if I'm reaching or stabilizing myself... so I'm moving kinda carefully as I go. And praying constantly.
God got me through the anxiety of getting on the plane and got me here just as the storm arrived. He blessed me with an easy checkin and some very good rest before treating me to a visit with wonderful friends, the Valentines, whom moved here earlier this year. We had a great dinner at Ole Time Barbecue that Brett had seen on Road Tasted with the Neelys on the Food Network channel. It was excellent. :d
Good nights' sleep capped off the big day and now I'm up getting ready to go learn how to teach drivers to drive fast. Oh, and safe too. :D
I am very thankful for the smooth sailing so far and I know I'll be okay going home... even through the tail end of a hurricane.
Monday, September 1, 2008
potentially big day tomorrow...
Hello again. I've been sitting on something that I've been trying not to get too excited about. I've had a handful of setback days still trying to get back to okay to help keep my mind off of it.
Last Tuesday, as I was waiting to see Dr. Grasso actually, I got a call from a fellow at Lockheed about a contract we'd recently won that is being staffed even as I type. I couldn't find anything about it earlier so it came as a bit of a surpise when I found out where it was. Take a guess?
If you guessed right back where I had been working, you'd be close. I've not been given all of the details yet (administrivia) but what it sounds like is going to be really really cool. I may find out more tomorrow as the wheels of bureaucracy continue to turn and I get closer to my old, normal status.
What I do know is it will be within my old customer's spaces at a rung or two higher on the ladder of development, test, and delivery that I used to work. I'll be back in that environment again which has me absolutely thrilled. Ever since it looked like I wouldn't be going back to my old task, I've been praying that whatever it is I should be doing be made nice and clear. I've been a bit thickheaded with this opportunity, but it does seem clear that's where I should be.
I was doubtful, and my bad days didn't help, but the customer is aware of my work limitations and wants me anyway. In fact, they want me as soon as possible so that I can overlap with the incumbent whom is leaving at the beginning of October. I do not know the situation there but that has also conspired to worry me; in the past it's always been me headed for the door having to train my replacement several times. But I'm going to put one foot in front of the other and believe it's where I ought to go. Hopefully, I will learn more tomorrow.
Meanwhile, I am a little nervous about the weekend approaching. I want to stay healthy this week and enjoy a driver coaching seminar down south in Durham, NC. The speaker is a fellow whose books I've read at the encouragement of some of my driving instructors. Before I got sidelined, I was being asked if I'd consider teaching and I secretly cringed. I'm not sure I'm skilled enough to teach someone else... I wouldn't know where to start. Well this is where I'm starting by learning how to teach another driver. I am looking forward to the experience and hope to catch up with some old friends at the same time.
Last Tuesday, as I was waiting to see Dr. Grasso actually, I got a call from a fellow at Lockheed about a contract we'd recently won that is being staffed even as I type. I couldn't find anything about it earlier so it came as a bit of a surpise when I found out where it was. Take a guess?
If you guessed right back where I had been working, you'd be close. I've not been given all of the details yet (administrivia) but what it sounds like is going to be really really cool. I may find out more tomorrow as the wheels of bureaucracy continue to turn and I get closer to my old, normal status.
What I do know is it will be within my old customer's spaces at a rung or two higher on the ladder of development, test, and delivery that I used to work. I'll be back in that environment again which has me absolutely thrilled. Ever since it looked like I wouldn't be going back to my old task, I've been praying that whatever it is I should be doing be made nice and clear. I've been a bit thickheaded with this opportunity, but it does seem clear that's where I should be.
I was doubtful, and my bad days didn't help, but the customer is aware of my work limitations and wants me anyway. In fact, they want me as soon as possible so that I can overlap with the incumbent whom is leaving at the beginning of October. I do not know the situation there but that has also conspired to worry me; in the past it's always been me headed for the door having to train my replacement several times. But I'm going to put one foot in front of the other and believe it's where I ought to go. Hopefully, I will learn more tomorrow.
Meanwhile, I am a little nervous about the weekend approaching. I want to stay healthy this week and enjoy a driver coaching seminar down south in Durham, NC. The speaker is a fellow whose books I've read at the encouragement of some of my driving instructors. Before I got sidelined, I was being asked if I'd consider teaching and I secretly cringed. I'm not sure I'm skilled enough to teach someone else... I wouldn't know where to start. Well this is where I'm starting by learning how to teach another driver. I am looking forward to the experience and hope to catch up with some old friends at the same time.
Tuesday, August 26, 2008
Can a guy get a break? -or- Here, have some bacteria!
I just lost five good days.
They were stolen from me, actually, but I'm not getting them back. Today isn't looking like a winner, but it is better.
I mentioned I took a trip to the emergency room in my last post. Welp, it happened again Wednesday afternoon last week and I got an extended stay in the hospital for my trouble. I had the prior experience going for me as I struggled to drive home and call for help. It was back to the ER where I writhed and just hoped the pain would pass just like Monday. I wound up being admitted for a possible bowel obstruction and the possibility of surgery. And yeah, it's making me cry just remembering that. :'(
I cried and prayed and just begged that no new serious thing would block us on the path out of this nightmare.
I got a very rough IV and started taking on fluids. The ER had given me a laundry list of painkillers that managed to get me through a "dry" CT scan that showed only the possibility of an obstruction or maybe twisting of the large bowel. By then the pain had started to move to my left side and I was sure it was not my stomach (or my appendix... that crossed my mind very early on).
I'll get to add to my list of painkillers not to give me as whatever they pumped me up with got my stomach in knots and kicked over the vomit machine.
Let me pause here and say something about the hospital bed. They kill me. Slowly and thoroughly. I now have a darkly humorous understanding of the expression, "laying on his death bed." The gem I was given had some system of air chambers underneath that would inflate and deflate if I dared to move. I never quite figured out its method, but I was told it was to prevent bed soreness. As a user, let me be the first to say IT DOES NOT WORK. The Bionic Woman can hawk those SleepNumber beds all day, but I'll never buy one again. Be on the lookout if you end up in the hospital! (Unless they're giving you bionic legs or something cool. That might be worth it.)
Obviously the vomitting had to be mitigated so what faster way to empty my stomach that with... another tube! Yay. I literally cried in terror and half hyperventilated myself unconscious. I begged that my stomach was already empty but I had no choice in the matter. At least this time I knew what to do and I spent every microsecond praying that it would go down easy.
It was easier than the first tubes I had way back when but that's not saying a lot. When nothing came up, only an x-ray would satisfy. No amount of me pleading that I was empty could convince the nurses. At least the x-ray guy came to me.
Since the dry CT hadn't been definitive, I had to get a contrast CT. Normally you'd drink the liquid and fill yourself up with stuff that the machine can see real well as it floats through you. Mine went down the tube; a consolation prize for not having to drink the stuff that tastes like El Cheapo white-label brand lemonade without enough sugar. Why they couldn't do this downstairs in the radiology department I do not know, so I got to enjoy the Mad Hatter's spinning teacups ride with a tummy full of yuck.
What goes in must come out and the vomit machine started once again. FINALLY the nurses listened to me and gave me painkiller that wouldn't make me barf. For my last ride, I was sitting half Indian-style in the bed when the wretching probably caused a hernia (of sorts... grrrr) that I will be trying to have addressed today.
With the "possible" hernia came a whole new set of consultations with urologists. I'm sorry, but what part of "this is all swelled up, it hurts like someone pulling on me, and I can feel stuff that shouldn't be there" does not translate into hernia? "Well, it's probably not small bowel and that's what I call a hernia."
I wanted to punch that knuckledhead.
I got the all ladies version of the Three Stooges in the imaging department. I'm not joking. The one urologist lady walks in while the technician lady has her magic wand on my friends "down there." Another one walks in and says, and I'm quoting directly here, "Oooh, this is the one I wanted to check out!" I guess it has been beneficial to have lost my modesty because I'd have otherwise been scarred for life.
Yes, it's a hernia, "of sorts" they said but it's not as bad as a bowel intrusion. I now understand why some hernias hurt like crazy and others are just uncomfortable. Regardless, I really don't want anyone but Dr. Grasso messing with my guts if surgery has to be done. I did manage to convince the weekday doctor to CALL him which the weekend doctor confirmed for me.
Oh yeah, you came in here with a possible bowel obstruction...
When the CT scans turned up no blockage and no clear evidence of a twist, someone dug just a little deeper and learned that chemo patients are prone to bacterial infections. (gasp!) So, let's try you on some antibiotics and see what that does.
Bing! I cleared up pretty quickly while I was on it, but when I got home, literally less than a day later, I was sick as a dog again. So, while trying to get all my doctors caught up on what has happened, figuring out if I should resume my chemo (round three should have started Sunday), coping with a hernia "of sorts", and being bummer that this all happened on just my second week back to work, I got scripted some more of the antibiotics I'd been given in the hospital. Yes, if you're reading closely, they discharged me without any prescriptions to finish off any infection. Hopefully there will be no more vomiting today now with the antibiotics back in play.
Jody doesn't want to go back there again. Not to the hospital, but not to that hospital. And I have to agree it was a less than wonderful stay. If it wasn't the guy sharing my room and his relatives who spoke only Spanish, loudly, it was the guy sharing my room and -his- relatives who spoke only Chinese. Loudly. And that guy snored like a train at all hours. I wish I could fall asleep that fast. And doctors just do not visit patients like you see on television.
But Tara visited me twice and Dad's friend, Terry, did as well. Naturally Jody and my parents kept me company too. I got a surprise visit in the middle of the night from Tara Ross, a nurse I'd met at a Superbowl party last year. She'd heard through her and Jody's mutual friend, Sue, that I'd been checked in and spent a nice long time with me on her break in the middle of the night. So, the lonely times weren't so much and the waiting times went by as fast as they could. Thanks to all of you. :)
Now it's off to try and get some food to stay in me today. We'll also see if I should get back onto the chemo and if the hernia is a real problem or something I can live with.
A year ago I was saying how much I wished this was over. I'd give anything just to be myself again.
They were stolen from me, actually, but I'm not getting them back. Today isn't looking like a winner, but it is better.
I mentioned I took a trip to the emergency room in my last post. Welp, it happened again Wednesday afternoon last week and I got an extended stay in the hospital for my trouble. I had the prior experience going for me as I struggled to drive home and call for help. It was back to the ER where I writhed and just hoped the pain would pass just like Monday. I wound up being admitted for a possible bowel obstruction and the possibility of surgery. And yeah, it's making me cry just remembering that. :'(
I cried and prayed and just begged that no new serious thing would block us on the path out of this nightmare.
I got a very rough IV and started taking on fluids. The ER had given me a laundry list of painkillers that managed to get me through a "dry" CT scan that showed only the possibility of an obstruction or maybe twisting of the large bowel. By then the pain had started to move to my left side and I was sure it was not my stomach (or my appendix... that crossed my mind very early on).
I'll get to add to my list of painkillers not to give me as whatever they pumped me up with got my stomach in knots and kicked over the vomit machine.
Let me pause here and say something about the hospital bed. They kill me. Slowly and thoroughly. I now have a darkly humorous understanding of the expression, "laying on his death bed." The gem I was given had some system of air chambers underneath that would inflate and deflate if I dared to move. I never quite figured out its method, but I was told it was to prevent bed soreness. As a user, let me be the first to say IT DOES NOT WORK. The Bionic Woman can hawk those SleepNumber beds all day, but I'll never buy one again. Be on the lookout if you end up in the hospital! (Unless they're giving you bionic legs or something cool. That might be worth it.)
Obviously the vomitting had to be mitigated so what faster way to empty my stomach that with... another tube! Yay. I literally cried in terror and half hyperventilated myself unconscious. I begged that my stomach was already empty but I had no choice in the matter. At least this time I knew what to do and I spent every microsecond praying that it would go down easy.
It was easier than the first tubes I had way back when but that's not saying a lot. When nothing came up, only an x-ray would satisfy. No amount of me pleading that I was empty could convince the nurses. At least the x-ray guy came to me.
Since the dry CT hadn't been definitive, I had to get a contrast CT. Normally you'd drink the liquid and fill yourself up with stuff that the machine can see real well as it floats through you. Mine went down the tube; a consolation prize for not having to drink the stuff that tastes like El Cheapo white-label brand lemonade without enough sugar. Why they couldn't do this downstairs in the radiology department I do not know, so I got to enjoy the Mad Hatter's spinning teacups ride with a tummy full of yuck.
What goes in must come out and the vomit machine started once again. FINALLY the nurses listened to me and gave me painkiller that wouldn't make me barf. For my last ride, I was sitting half Indian-style in the bed when the wretching probably caused a hernia (of sorts... grrrr) that I will be trying to have addressed today.
With the "possible" hernia came a whole new set of consultations with urologists. I'm sorry, but what part of "this is all swelled up, it hurts like someone pulling on me, and I can feel stuff that shouldn't be there" does not translate into hernia? "Well, it's probably not small bowel and that's what I call a hernia."
I wanted to punch that knuckledhead.
I got the all ladies version of the Three Stooges in the imaging department. I'm not joking. The one urologist lady walks in while the technician lady has her magic wand on my friends "down there." Another one walks in and says, and I'm quoting directly here, "Oooh, this is the one I wanted to check out!" I guess it has been beneficial to have lost my modesty because I'd have otherwise been scarred for life.
Yes, it's a hernia, "of sorts" they said but it's not as bad as a bowel intrusion. I now understand why some hernias hurt like crazy and others are just uncomfortable. Regardless, I really don't want anyone but Dr. Grasso messing with my guts if surgery has to be done. I did manage to convince the weekday doctor to CALL him which the weekend doctor confirmed for me.
Oh yeah, you came in here with a possible bowel obstruction...
When the CT scans turned up no blockage and no clear evidence of a twist, someone dug just a little deeper and learned that chemo patients are prone to bacterial infections. (gasp!) So, let's try you on some antibiotics and see what that does.
Bing! I cleared up pretty quickly while I was on it, but when I got home, literally less than a day later, I was sick as a dog again. So, while trying to get all my doctors caught up on what has happened, figuring out if I should resume my chemo (round three should have started Sunday), coping with a hernia "of sorts", and being bummer that this all happened on just my second week back to work, I got scripted some more of the antibiotics I'd been given in the hospital. Yes, if you're reading closely, they discharged me without any prescriptions to finish off any infection. Hopefully there will be no more vomiting today now with the antibiotics back in play.
Jody doesn't want to go back there again. Not to the hospital, but not to that hospital. And I have to agree it was a less than wonderful stay. If it wasn't the guy sharing my room and his relatives who spoke only Spanish, loudly, it was the guy sharing my room and -his- relatives who spoke only Chinese. Loudly. And that guy snored like a train at all hours. I wish I could fall asleep that fast. And doctors just do not visit patients like you see on television.
But Tara visited me twice and Dad's friend, Terry, did as well. Naturally Jody and my parents kept me company too. I got a surprise visit in the middle of the night from Tara Ross, a nurse I'd met at a Superbowl party last year. She'd heard through her and Jody's mutual friend, Sue, that I'd been checked in and spent a nice long time with me on her break in the middle of the night. So, the lonely times weren't so much and the waiting times went by as fast as they could. Thanks to all of you. :)
Now it's off to try and get some food to stay in me today. We'll also see if I should get back onto the chemo and if the hernia is a real problem or something I can live with.
A year ago I was saying how much I wished this was over. I'd give anything just to be myself again.
Tuesday, August 19, 2008
back to the grindstone
I did resume the position last Monday. I did not wear a pink shirt, but I did wear some of the khakis and oxfords I've had hanging in the closet now that they fit me once again!
A thought occurred to me a few weeks ago when I was threading on my favorite belt; the one I got in Camden Lock in London when Jody and I first vacationed there when we were dating. I am thinner than when I first met her. I vibrantly remember talking with David Bristow, the leather crafter, as he measured my waist and sized my belt to let me gain or lose some weight. I'm on the last hole he put in the belt for me. :)
I had a bit of a scare before I did start back. Wednesday and Thursday were sketchy as I'd probably eaten something I shouldn't have. Friday it was the other end as I'm pretty sure the yogurt I had with breakfast, though fully fresh and very yummy, did not sit well all day. My pink friends helped.
I also had a fright last night as I reluctantly had Jody take me to the ER. I'd had me regular Monday dinner with some of my oldest friends and come home ready for bed. I was dozing and Jody was reading when I was literally sat up in bed by a very sudden and very sharp pain... right in mah belly! [/very bad Mike Meyers/Austin Powers voice]
Though I would be proven wrong later, it was very very different from my usual gas pains from eats I've learned to avoid. I was doubled over within minutes and nothing I did was making things better. Jody very deftly rushed me to the hospital with smooth speed and maybe a few pictures from some red light cameras. If she gets pinched, I will testify on her behalf I thought I was in serious trouble.
The pain subsided with some choice, um, expressions of my gas-itutude and thanks to the nurses and technicians in the ER. With some fluids, I was able to lay flat again in about an hour and a half but I tell you now, I was seriously hurting beforehand.
I called in this morning to relay my story and ask to come in late and was told to just stay home and rest. It's not like I'm missing anything urgent right now. When I reported in last Monday, I was given a desk on a ghost-town of an office. A football field's worth of cubicles and a whopping three people amongst them; myself included. We're a rag-tag bunch with me just getting back into the swing and two other fellows looking for work between assignments. I checked email, got my voicemail restored, returned a voicemail from a month ago, reformatted my resume, got my retirement elections back on course, and surfed the company network for job listings. It's like when I first started with Lockeed so I imagine I'll be tapped to do some backfill work here and there for a while and then be off on another glamorous, action-packed adventure.
Back home I've been chipping away at the net finding old episodes of Top Gear and Fifth Gear. I found a cool fleet vehicle service company whom was able to steam slean the engine and transmission on the bimmer so I can plot my assault on the timing belt and water pump in the coming days. Knock on wood, the Xeloda pills haven't hit me very hard except for possibly being the cause of my trip to the ER. But that I think may have been a bad combo of the chemo starting to accumulate and poor timing of slight dehydration and maybe a bad choice for lunch or dinner yesterday. I may have crossed a threshold with the stuff and might need to get the Tagamet pills back into my daily snack pack. When dry toast makes you belch, you may have a little stomach acid trouble. ;)
Speaking of lunch yesterday, I got to enjoy it with Jody as we celebrated her passing the Project Management Institute's Project Manager Professional exam! She's certified now!
To close on an upbeat note, I ran across a net web game/toy you should try.
Check out Fantastic Contraption!
A thought occurred to me a few weeks ago when I was threading on my favorite belt; the one I got in Camden Lock in London when Jody and I first vacationed there when we were dating. I am thinner than when I first met her. I vibrantly remember talking with David Bristow, the leather crafter, as he measured my waist and sized my belt to let me gain or lose some weight. I'm on the last hole he put in the belt for me. :)
I had a bit of a scare before I did start back. Wednesday and Thursday were sketchy as I'd probably eaten something I shouldn't have. Friday it was the other end as I'm pretty sure the yogurt I had with breakfast, though fully fresh and very yummy, did not sit well all day. My pink friends helped.
I also had a fright last night as I reluctantly had Jody take me to the ER. I'd had me regular Monday dinner with some of my oldest friends and come home ready for bed. I was dozing and Jody was reading when I was literally sat up in bed by a very sudden and very sharp pain... right in mah belly! [/very bad Mike Meyers/Austin Powers voice]
Though I would be proven wrong later, it was very very different from my usual gas pains from eats I've learned to avoid. I was doubled over within minutes and nothing I did was making things better. Jody very deftly rushed me to the hospital with smooth speed and maybe a few pictures from some red light cameras. If she gets pinched, I will testify on her behalf I thought I was in serious trouble.
The pain subsided with some choice, um, expressions of my gas-itutude and thanks to the nurses and technicians in the ER. With some fluids, I was able to lay flat again in about an hour and a half but I tell you now, I was seriously hurting beforehand.
I called in this morning to relay my story and ask to come in late and was told to just stay home and rest. It's not like I'm missing anything urgent right now. When I reported in last Monday, I was given a desk on a ghost-town of an office. A football field's worth of cubicles and a whopping three people amongst them; myself included. We're a rag-tag bunch with me just getting back into the swing and two other fellows looking for work between assignments. I checked email, got my voicemail restored, returned a voicemail from a month ago, reformatted my resume, got my retirement elections back on course, and surfed the company network for job listings. It's like when I first started with Lockeed so I imagine I'll be tapped to do some backfill work here and there for a while and then be off on another glamorous, action-packed adventure.
Back home I've been chipping away at the net finding old episodes of Top Gear and Fifth Gear. I found a cool fleet vehicle service company whom was able to steam slean the engine and transmission on the bimmer so I can plot my assault on the timing belt and water pump in the coming days. Knock on wood, the Xeloda pills haven't hit me very hard except for possibly being the cause of my trip to the ER. But that I think may have been a bad combo of the chemo starting to accumulate and poor timing of slight dehydration and maybe a bad choice for lunch or dinner yesterday. I may have crossed a threshold with the stuff and might need to get the Tagamet pills back into my daily snack pack. When dry toast makes you belch, you may have a little stomach acid trouble. ;)
Speaking of lunch yesterday, I got to enjoy it with Jody as we celebrated her passing the Project Management Institute's Project Manager Professional exam! She's certified now!
To close on an upbeat note, I ran across a net web game/toy you should try.
Check out Fantastic Contraption!
Saturday, August 9, 2008
Pink things
Last night Jody and I watched the stunning spectacular of the Beijing opening ceremonies of the '08 Summer Olympics. If you missed it, stop. Do not pass Go and do not collect $200 until you've made an effort to find some video of the production. It was unbelievable.
And it came to me courtesy of some little pink friends. One was Pepto Bismol's new antacid pills that helped me finally come down off of something bad I had for breakfast yesterday. Dunno what it was though I strongly suspect the yogurt though it tasted perfectly yummy... so did my bowl of Cheerios. Go figure.
This was after a very loooong day before finally relieved by this pink cream called Calmoseptine. I'm not kidding; this stuff is magic. Come to think of it, it was two very looong days. It's bad when something hurts so much that you can't remember time.
My little chemo pills are also pink and that first week wasn't all that bad. I was expecting a lot worse, but it didn't really hit me. I had more difficulty psyching myself up to take them the first few days than they actually affected me.
These little pink aides are helping me avoid a pink slip that would otherwise be coming my way at the end of the month.
I'd thought three more months of chemo were going to seal my fate and keep me from going back to work. Dr. Lee suggested I give the pills a try and see how they affect me. I agreed, mostly out of desperation, but was pleasantly surprised. I'm not being stupid though and I've acknowledged there will likely be a cumulative effect, but that is okay with Lockheed and they're welcoming me back part-time on Monday morning. :)
Personally, I think getting back to work and feeling useful again will have their own benefits. I may wear a pink shirt on Monday.
Maybe not. ;)
And it came to me courtesy of some little pink friends. One was Pepto Bismol's new antacid pills that helped me finally come down off of something bad I had for breakfast yesterday. Dunno what it was though I strongly suspect the yogurt though it tasted perfectly yummy... so did my bowl of Cheerios. Go figure.
This was after a very loooong day before finally relieved by this pink cream called Calmoseptine. I'm not kidding; this stuff is magic. Come to think of it, it was two very looong days. It's bad when something hurts so much that you can't remember time.
My little chemo pills are also pink and that first week wasn't all that bad. I was expecting a lot worse, but it didn't really hit me. I had more difficulty psyching myself up to take them the first few days than they actually affected me.
These little pink aides are helping me avoid a pink slip that would otherwise be coming my way at the end of the month.
I'd thought three more months of chemo were going to seal my fate and keep me from going back to work. Dr. Lee suggested I give the pills a try and see how they affect me. I agreed, mostly out of desperation, but was pleasantly surprised. I'm not being stupid though and I've acknowledged there will likely be a cumulative effect, but that is okay with Lockheed and they're welcoming me back part-time on Monday morning. :)
Personally, I think getting back to work and feeling useful again will have their own benefits. I may wear a pink shirt on Monday.
Maybe not. ;)
Wednesday, July 23, 2008
Sunday! Sunday! SUNDAY!!! er... WEDNESDAY!
Just five dollars gets you the whole seat but you'll only need the eeeeedge!
I was a little anxious yesterday afternoon heading for Dr. Lee's office. Was the CT scan good enough? Should I be expecting a fight with Kaiser over getting a PET scan? It's been five weeks... am I going back on chemo? Can I go back to work?
Yes, these questions and more were all answered on this week's episode of As Sco's World Turns.
In order, yes the CT scan was good enough. The report was a whopping two pages instead of two paragraphs and had many good things to say. There was nothing to see in the lymph nodes of my chest. The diseased spots in my right lung had shrunken more still compared to April and August of last year. The spot on my liver had also diminished down to less than an eighth of an inch in diameter; even smaller than when Dr. Grasso spied it when I had surgery. He said then that it was too small to go after then, even while I was already konked out. My spleen is enlarged, but that is most likely due to the chemo making things hard on my immune system and it is (was) pumped up now that the chemo has been off for a while. There is also a good deal of inflammation in the soft tissue 'down there' which is only a worry if I'd not been through radiation.
No, Dr. Lee does not need me to suit up for battle with Kaiser. She was a little sly when she said she would save her admonition for the denial for another time. There is something to be said for being owed one when someone goofs something up for you. ;)
Yes, I am going back on chemo.
Yeah, I needed a moment to let that sink in too. I tried to bargain right away because it's going to be the Xeloda again (pills) instead of a drip. I'm trying to keep an open mind here and hoping the side effects will be similar to last year's experience but without the sunburn from the inside. I'm going to need more willpower this time. Dr. Lee made it plain though that we need to do this and it needs to be for a few months to make sure all of the work I've done so far is not wasted by cutting things off too early. That would suck. Big time. I need to remember that to avoid the temptation of 'forgetting' to take the stuff.
Yeesh. You'd think a day to accept the news would be enough. :\
Can I go back to work? Sure. But Dr. Lee cautioned me to give the Xeloda a try and judge how the full dose hits me (the does I took last year was only 50% because I was getting microwaved at the same time). I agreed that would probably be a good idea and I shared that with my section manager at work today. Meanwhile, Dr. Lee is ready to write me anything I need to rejoin the wage-earning population. Just plain interacting with people again is going to make me feel good. :)
I was a little anxious yesterday afternoon heading for Dr. Lee's office. Was the CT scan good enough? Should I be expecting a fight with Kaiser over getting a PET scan? It's been five weeks... am I going back on chemo? Can I go back to work?
Yes, these questions and more were all answered on this week's episode of As Sco's World Turns.
In order, yes the CT scan was good enough. The report was a whopping two pages instead of two paragraphs and had many good things to say. There was nothing to see in the lymph nodes of my chest. The diseased spots in my right lung had shrunken more still compared to April and August of last year. The spot on my liver had also diminished down to less than an eighth of an inch in diameter; even smaller than when Dr. Grasso spied it when I had surgery. He said then that it was too small to go after then, even while I was already konked out. My spleen is enlarged, but that is most likely due to the chemo making things hard on my immune system and it is (was) pumped up now that the chemo has been off for a while. There is also a good deal of inflammation in the soft tissue 'down there' which is only a worry if I'd not been through radiation.
No, Dr. Lee does not need me to suit up for battle with Kaiser. She was a little sly when she said she would save her admonition for the denial for another time. There is something to be said for being owed one when someone goofs something up for you. ;)
Yes, I am going back on chemo.
Yeah, I needed a moment to let that sink in too. I tried to bargain right away because it's going to be the Xeloda again (pills) instead of a drip. I'm trying to keep an open mind here and hoping the side effects will be similar to last year's experience but without the sunburn from the inside. I'm going to need more willpower this time. Dr. Lee made it plain though that we need to do this and it needs to be for a few months to make sure all of the work I've done so far is not wasted by cutting things off too early. That would suck. Big time. I need to remember that to avoid the temptation of 'forgetting' to take the stuff.
Yeesh. You'd think a day to accept the news would be enough. :\
Can I go back to work? Sure. But Dr. Lee cautioned me to give the Xeloda a try and judge how the full dose hits me (the does I took last year was only 50% because I was getting microwaved at the same time). I agreed that would probably be a good idea and I shared that with my section manager at work today. Meanwhile, Dr. Lee is ready to write me anything I need to rejoin the wage-earning population. Just plain interacting with people again is going to make me feel good. :)
Wednesday, July 16, 2008
what a tangled web we type
Sure enough, I got my little five page letter from Kaiser explaining to me why they turned down the procedure my doctor had not requested. Right there in black and white they spelled out that I don't need a full body PET scan, not the thoracic scan we're trying to get. On the one hand, they got it right. If we'd asked for a full body scan, it shouldn't be approved because it's not needed. But on the other hand, they should have corrected the typo when Dr. Lee called in to explain that what was denied was not what she'd requested. Literally, someone goofed and checked the wrong box.
But no. The reviewing physician at Kaiser (whose name, address, and phone number are in the denial letter!) apparently understood Dr. Lee's request and that a clerical error had been made but still turned down the procedure... the correct procedure.
Que?
Denise's advice is to go ahead and start the appeal process. I'm not quite sure how I'm going to convince the Kaiser doctor if he has already heard Dr. Lee and still said no. But I'll try, I guess. At the minimum, the CT scan I just had done will probably come back inconclusive giving Dr. Lee another reason to ask for a PET scan. A thoracic PET scan. My very first CT scan was not revealing and that was while the tumor and mets were untreated. Seriously, Kaiser... duh, much?
So I'll do that today. And I'll ping Dr. Lee to see if she'll write me a letter for Lockheed to take me back on the payroll. And I'll call some tree guys after my county environmental guy visited on Monday. And I'll take a whack at cutting the grass; slowly so I don't keel over. And I'll whittle off some lighting fixes for the house. And when it gets hot, I'll retreat to the air conditioning and fight with Mom's dying laptop to rescue her pictures. And I'll have to work in a trip today to make sure we have dog food. Ahhh... tedium... ;)
But no. The reviewing physician at Kaiser (whose name, address, and phone number are in the denial letter!) apparently understood Dr. Lee's request and that a clerical error had been made but still turned down the procedure... the correct procedure.
Que?
Denise's advice is to go ahead and start the appeal process. I'm not quite sure how I'm going to convince the Kaiser doctor if he has already heard Dr. Lee and still said no. But I'll try, I guess. At the minimum, the CT scan I just had done will probably come back inconclusive giving Dr. Lee another reason to ask for a PET scan. A thoracic PET scan. My very first CT scan was not revealing and that was while the tumor and mets were untreated. Seriously, Kaiser... duh, much?
So I'll do that today. And I'll ping Dr. Lee to see if she'll write me a letter for Lockheed to take me back on the payroll. And I'll call some tree guys after my county environmental guy visited on Monday. And I'll take a whack at cutting the grass; slowly so I don't keel over. And I'll whittle off some lighting fixes for the house. And when it gets hot, I'll retreat to the air conditioning and fight with Mom's dying laptop to rescue her pictures. And I'll have to work in a trip today to make sure we have dog food. Ahhh... tedium... ;)
Sunday, July 13, 2008
biding my time
Tomorrow morning (Monday) I'll be headed in for a CT scan. Fun. Two hours of lounging in a darkened room sipping day old strawberry milkshake. That's what the barium contrast stuff tastes like. I've learned to drink it without thinking about how gross it tastes. ;P
You may be asking why a CT scan and not a PET scan? Or maybe not. Well, thanks to a clerical error and some apparently paperwork shy doctors at Kaiser, the referral for a PET scan was turned down. The Kasier person who received the original request put it in wrong as if Dr. Lee had sent in a full body scan request; which I do not need and should have been turned down if that was really what had been requested. But we asked for a thoracic scan, just like the first two. Dr. Lee called in last Friday to correct the error and still got turned down.
Now, this is something I need to have done. Dr. Lee needs to see the same kind of scan as the first two to judge how well the chemo has done. Apples and apples, ya know?
So, while I wait tomorrow morning, I will call Denise (my case manager) and ask her if we can't get this approved somehow. I won't be surprised if she agrees with her standin (Denise was on vacation last week) and tells me it may be easier to have Dr. Lee call in another one but to make sure it is received correctly.
No biggie though it's not like I need any extra crap in my life right now.
I'm trying not to get my hopes up, but I may get an assignment to work in a few weeks. I don't have many specifics but one of my strengths has always been an ability to adapt to new jobs.
You may be asking why a CT scan and not a PET scan? Or maybe not. Well, thanks to a clerical error and some apparently paperwork shy doctors at Kaiser, the referral for a PET scan was turned down. The Kasier person who received the original request put it in wrong as if Dr. Lee had sent in a full body scan request; which I do not need and should have been turned down if that was really what had been requested. But we asked for a thoracic scan, just like the first two. Dr. Lee called in last Friday to correct the error and still got turned down.
Now, this is something I need to have done. Dr. Lee needs to see the same kind of scan as the first two to judge how well the chemo has done. Apples and apples, ya know?
So, while I wait tomorrow morning, I will call Denise (my case manager) and ask her if we can't get this approved somehow. I won't be surprised if she agrees with her standin (Denise was on vacation last week) and tells me it may be easier to have Dr. Lee call in another one but to make sure it is received correctly.
No biggie though it's not like I need any extra crap in my life right now.
I'm trying not to get my hopes up, but I may get an assignment to work in a few weeks. I don't have many specifics but one of my strengths has always been an ability to adapt to new jobs.
Saturday, June 28, 2008
The Accidental Astronaut
Pun fully intended above.
Yesterday was a milestone; one I didn't think I would reach for a bit nor was I fully prepared for it. I'm off chemo.
Well sort of, so before you start whooping it up there is a catch. Lemme rewind...
It had been a few weeks since I'd met with Dr. Lee and we'd last talked about possibly switching me to oral chemo (my old friend Xeloda) to finish things off. I'd made noise then about the neuropathy and how my fingertips were numbing and both my feet were constantly freezing numb. We agreed to go two more rounds. Round nine was on when Brie passed and only Grace carried me through that without days of ill effect. Round ten was last week and pounded me harder than ever before. Compounding that was Jody needed to be away for the week for training so I was on my own with the dogs to care for. I was sick for five days straight until Thursday this week I finally got some relief.
Of course, that was the day Dad was scheduled to go in for his dialysis catherter surgery which had been worrying me all week too. I can put on a good show for "routine" surgeries but it doesn't mean I'm not still worried. Thankfully Dad's procedure went just fine and, though he's got some expected abdominal pain, he was able to get up and down under his own steam that afternoon. I'm hoping to visit he and Mom today now that Jody is home too.
Thursday evening I was glad I'd been able to go with Mom to the hospital and I was feeling much better than I had all week. The boys had been very depressed all week with no Jody around so I asked them if they wanted to go for a drive. They perked up at that as did I and we went out for an easy loop around 108 down to 32 and back up 95 to home. I noticed Bailey still nursing and licking at one of his feet when we got back and found it was bleeding. (Yes, there are bloodstains in my car now too.)
It was too late for the regular vet so I called the overnight place. The nurse there encouraged me to keep an eye on him and bring him in if it got worse. The bleeding had largely stopped and Bailey was curled up asleep by the time I got off the phone. In the morning, I made an appointment to have him checked out... the poor guy keeps hurting both of his hind feet but this was the first time anything had bled.
But that had to be after I'd visit Dr. Lee again...
I came in with only two items on my agenda; I needed two more packets of the lovely anti-nausea pills that go with each chemo drip and can we PLEASE talk about stopping the oxiliplatin because my fingers and feet are now blocks of ice.
She asked me how things were going and I relayed my bullets to her. She asked if the anxiety was still there and I had to admit it was but the little ativan pills helped and I planned on taking one next week to help psych me up for round eleven. All of this must have tipped the scales because she suggested enough had been enough... but...
She began to tell me about a drug called Avastin that I'd be switching too along with Xeloda to polish off the full chemotherapy treatment. I've already been getting Avastin as part of my cocktail; it is the piece that interrupts the signaling of cancer cells to blood vessel cells to make new blood vessels. We'll finish off the poison that kills the cancer cells (and others) and stop the little knives from flying around bursting capilaries that slows new cell growth, but we have to keep any living cells left from growing.
This started computing in my brain and I asked the obvious question of how long this would last. I dod not remember learning about any sort of maintenance therapy only monitoring and possibly needing more attention once this was all over with. Getting to "over with" has become one of the last few things I've been trying to reach... and all this sounded like was MORE.
I held it together until I left and had a good cry in the car. Jody was in class, Mom was home caring for Dad, Bailey was hurt and needed me to get him to the vet, and I had already postponed visiting with Alex because of Bailey. I felt like I'd been just barely climbing mountains and now I had to fly to the Moon. I just prayed.
I got some peace and a little perspective in response and I was thankful. Yes I'll still be going in for regular drips every other week but I won't be taking home that annoying little pump overnight. (I can still hear that thing and it makes me feel sick.) This Avastin stuff does have some side effects but nothing like the sapping sickness of the IV chemo, flourouroouroro-whatzit. I get a month off before we start this phase and there will be a third PET/CT scan in there to see how things have changed since the reversal surgery. This may, for all practical reasons, mean my last batch of really sick days just passed me by.
And yeah, that brings tears to my eyes but this morning they are happy ones. :')
Yesterday was a milestone; one I didn't think I would reach for a bit nor was I fully prepared for it. I'm off chemo.
Well sort of, so before you start whooping it up there is a catch. Lemme rewind...
It had been a few weeks since I'd met with Dr. Lee and we'd last talked about possibly switching me to oral chemo (my old friend Xeloda) to finish things off. I'd made noise then about the neuropathy and how my fingertips were numbing and both my feet were constantly freezing numb. We agreed to go two more rounds. Round nine was on when Brie passed and only Grace carried me through that without days of ill effect. Round ten was last week and pounded me harder than ever before. Compounding that was Jody needed to be away for the week for training so I was on my own with the dogs to care for. I was sick for five days straight until Thursday this week I finally got some relief.
Of course, that was the day Dad was scheduled to go in for his dialysis catherter surgery which had been worrying me all week too. I can put on a good show for "routine" surgeries but it doesn't mean I'm not still worried. Thankfully Dad's procedure went just fine and, though he's got some expected abdominal pain, he was able to get up and down under his own steam that afternoon. I'm hoping to visit he and Mom today now that Jody is home too.
Thursday evening I was glad I'd been able to go with Mom to the hospital and I was feeling much better than I had all week. The boys had been very depressed all week with no Jody around so I asked them if they wanted to go for a drive. They perked up at that as did I and we went out for an easy loop around 108 down to 32 and back up 95 to home. I noticed Bailey still nursing and licking at one of his feet when we got back and found it was bleeding. (Yes, there are bloodstains in my car now too.)
It was too late for the regular vet so I called the overnight place. The nurse there encouraged me to keep an eye on him and bring him in if it got worse. The bleeding had largely stopped and Bailey was curled up asleep by the time I got off the phone. In the morning, I made an appointment to have him checked out... the poor guy keeps hurting both of his hind feet but this was the first time anything had bled.
But that had to be after I'd visit Dr. Lee again...
I came in with only two items on my agenda; I needed two more packets of the lovely anti-nausea pills that go with each chemo drip and can we PLEASE talk about stopping the oxiliplatin because my fingers and feet are now blocks of ice.
She asked me how things were going and I relayed my bullets to her. She asked if the anxiety was still there and I had to admit it was but the little ativan pills helped and I planned on taking one next week to help psych me up for round eleven. All of this must have tipped the scales because she suggested enough had been enough... but...
She began to tell me about a drug called Avastin that I'd be switching too along with Xeloda to polish off the full chemotherapy treatment. I've already been getting Avastin as part of my cocktail; it is the piece that interrupts the signaling of cancer cells to blood vessel cells to make new blood vessels. We'll finish off the poison that kills the cancer cells (and others) and stop the little knives from flying around bursting capilaries that slows new cell growth, but we have to keep any living cells left from growing.
This started computing in my brain and I asked the obvious question of how long this would last. I dod not remember learning about any sort of maintenance therapy only monitoring and possibly needing more attention once this was all over with. Getting to "over with" has become one of the last few things I've been trying to reach... and all this sounded like was MORE.
I held it together until I left and had a good cry in the car. Jody was in class, Mom was home caring for Dad, Bailey was hurt and needed me to get him to the vet, and I had already postponed visiting with Alex because of Bailey. I felt like I'd been just barely climbing mountains and now I had to fly to the Moon. I just prayed.
I got some peace and a little perspective in response and I was thankful. Yes I'll still be going in for regular drips every other week but I won't be taking home that annoying little pump overnight. (I can still hear that thing and it makes me feel sick.) This Avastin stuff does have some side effects but nothing like the sapping sickness of the IV chemo, flourouroouroro-whatzit. I get a month off before we start this phase and there will be a third PET/CT scan in there to see how things have changed since the reversal surgery. This may, for all practical reasons, mean my last batch of really sick days just passed me by.
And yeah, that brings tears to my eyes but this morning they are happy ones. :')
Wednesday, June 11, 2008
What a week...
I tried writing Wednesday morning because I needed an outlet. I wound up saving the draft and not posting and I'm glad I did.
I was angry.
Oh yeah was I angry. A friend had died in, what I felt, was the most unfair and cruel circumstance. I'd railed and cried and wished it could have been me instead. I've had a good life so far and hers had hardly started. I was more angry over this than I was at any of the low points I've found myself trying to get through colon cancer. It simply wasn't fair or right and if I believe God made me in His image then my sense of fairness and rightness must have come from Him, right?
THIS DID NOT ADD UP. And it was making me furious.
That draft post was full of it. I admit it now because, honestly, it's the right thing to do. I am no saint and the truth, the whole truth, ought to be out there for you guys to see. Yes, I believe, but that does not make me more than human.
I was dreading the memorial service Wednesday afternoon. When I went in last Friday to return the chemo pump, I half begged Dr. Lee to prescribe me something for anxiety; she gave me ativan. It had worked so well at calming me down with the last two of those towering chemo drips that something at home would really be nice, especially with such heartbreaking news to have received the day before. But it felt like cheating; to have a little pill that would just chill me out instead of suffer all the hurt I was feeling for Brie. I haven't taken one again since the first one.
I downloaded a carefully metered amount of this on Jody. She lovingly reminded me that yeah, we have faith in God's plan but that He's not the only force at work. I grabbed onto that and reiterated my deepest hope that on some level Brie's doctors were able to learn something that would help save another person. Until then, it was the only good thing I could even remotely find about this whole mess.
We were going early to allow Jody time to help with the flower arrangements she'd volunteered to captain. That left me with time to call my Dad and talk a little. Brie's brother Alex found me too and he was doing alright. I told him he was welcome to visit when he felt up for it and that I'd bought the Lego Indiana Jones game that we could play two-player.
Even from a distance, Holly had made it very clear she wanted the service to be a celebration of Brie's life. Given my emotional state at the time I was struggling with this. The service was overwhelming and there were some moments that really touched me.
Where I had been so amazed at the miracle of Brie being put into the hands of specialists both in Ireland and here at home, it was one of the nurses at Hopkins Childrens Center who may have been the real miracle. You see, not only was she a nurse at the hospital but she was also a member of their church and had been Brie's Bible study leader just a few months before. A friend and a caregiver and a mentor, right there for her. It was this young lady whom reminded all us that Brie had framed out peace and love as the most important things to her.
Alex had written a little about his sister but it was the story his pastor shared about a walk they'd been on a few days earlier that struck me. The pastor admitted he stumbled into the question that, at times like these, really doesn't have an answer. He said he'd asked Alex, "Are you okay?" He said Alex paused at this and answered honestly that no, he wasn't. Not yet anyway, but Brie was and that would help him be okay soon.
Why I couldn't see this for myself became clear just a bit later.
As the service concluded, the pastor told us another story of how Brie had picked a verse from her Bible with her Dad and had pinned it to the wall in her hospital room. It was 2 Corinthians 5:7 which reads, "For we walk by faith and not by sight."
Like a curtain being pulled back I realized that's been my problem most lately. It's also the reason I needed to write this and be honest with you who may be reading. I've not been walking by my faith lately. I've been right back to handling all of this stuff on my own and praying only when it hurt instead of when I was fine... which I'd complacently chalked up to my own good work. Being human can bite you in the butt sometimes. No pun intended.
The pastor concluded by affirming just as Holly had made plain that Brie would not want to be mourned in sorrow. Paraphrasing, she would have told us that she wanted to be missed a little but that we should also make peace and love important in our lives.
Both Brie and Alex have been such wonderful examples to me. Though I am still sad, I am not angry any more. I know again I need to really walk by my faith. And I know that Brie is okay now and that will help me be okay too.
I was angry.
Oh yeah was I angry. A friend had died in, what I felt, was the most unfair and cruel circumstance. I'd railed and cried and wished it could have been me instead. I've had a good life so far and hers had hardly started. I was more angry over this than I was at any of the low points I've found myself trying to get through colon cancer. It simply wasn't fair or right and if I believe God made me in His image then my sense of fairness and rightness must have come from Him, right?
THIS DID NOT ADD UP. And it was making me furious.
That draft post was full of it. I admit it now because, honestly, it's the right thing to do. I am no saint and the truth, the whole truth, ought to be out there for you guys to see. Yes, I believe, but that does not make me more than human.
I was dreading the memorial service Wednesday afternoon. When I went in last Friday to return the chemo pump, I half begged Dr. Lee to prescribe me something for anxiety; she gave me ativan. It had worked so well at calming me down with the last two of those towering chemo drips that something at home would really be nice, especially with such heartbreaking news to have received the day before. But it felt like cheating; to have a little pill that would just chill me out instead of suffer all the hurt I was feeling for Brie. I haven't taken one again since the first one.
I downloaded a carefully metered amount of this on Jody. She lovingly reminded me that yeah, we have faith in God's plan but that He's not the only force at work. I grabbed onto that and reiterated my deepest hope that on some level Brie's doctors were able to learn something that would help save another person. Until then, it was the only good thing I could even remotely find about this whole mess.
We were going early to allow Jody time to help with the flower arrangements she'd volunteered to captain. That left me with time to call my Dad and talk a little. Brie's brother Alex found me too and he was doing alright. I told him he was welcome to visit when he felt up for it and that I'd bought the Lego Indiana Jones game that we could play two-player.
Even from a distance, Holly had made it very clear she wanted the service to be a celebration of Brie's life. Given my emotional state at the time I was struggling with this. The service was overwhelming and there were some moments that really touched me.
Where I had been so amazed at the miracle of Brie being put into the hands of specialists both in Ireland and here at home, it was one of the nurses at Hopkins Childrens Center who may have been the real miracle. You see, not only was she a nurse at the hospital but she was also a member of their church and had been Brie's Bible study leader just a few months before. A friend and a caregiver and a mentor, right there for her. It was this young lady whom reminded all us that Brie had framed out peace and love as the most important things to her.
Alex had written a little about his sister but it was the story his pastor shared about a walk they'd been on a few days earlier that struck me. The pastor admitted he stumbled into the question that, at times like these, really doesn't have an answer. He said he'd asked Alex, "Are you okay?" He said Alex paused at this and answered honestly that no, he wasn't. Not yet anyway, but Brie was and that would help him be okay soon.
Why I couldn't see this for myself became clear just a bit later.
As the service concluded, the pastor told us another story of how Brie had picked a verse from her Bible with her Dad and had pinned it to the wall in her hospital room. It was 2 Corinthians 5:7 which reads, "For we walk by faith and not by sight."
Like a curtain being pulled back I realized that's been my problem most lately. It's also the reason I needed to write this and be honest with you who may be reading. I've not been walking by my faith lately. I've been right back to handling all of this stuff on my own and praying only when it hurt instead of when I was fine... which I'd complacently chalked up to my own good work. Being human can bite you in the butt sometimes. No pun intended.
The pastor concluded by affirming just as Holly had made plain that Brie would not want to be mourned in sorrow. Paraphrasing, she would have told us that she wanted to be missed a little but that we should also make peace and love important in our lives.
Both Brie and Alex have been such wonderful examples to me. Though I am still sad, I am not angry any more. I know again I need to really walk by my faith. And I know that Brie is okay now and that will help me be okay too.
Thursday, June 5, 2008
please pray for Holly, Alex, and Mark
I have to post a very sad update. Brie has passed away. I do not know the details and right now my only hope is that she was not in any pain. Those hurting most are her parents, Holly and Mark, and her brother, Alex. Please pray for them.
[old post]
I've posted before that she'd fallen ill on a vacation to Ireland and was found to have contracted an acute onset of apalastic anemia; in short, her bone marrow has ceased producing blood cells of all types. Most recently, she has been so unstable that she had to be isolated in the pediatric intensive care unit at Johns Hopkins Childrens Center fighting not only a short balance of white cells, but doing so against a reported three different types of bacteria floating rampant through her little 12 year old self... oh, and running at 100-degree plus fever. For a while, she was not able to breathe unassisted though it sounds today as that has been mitigated. I've heard she was awake last night and asking for Holly, her mom.
Holly needs our most sincere prayers as well. She's been painted into a corner rather quickly with Brie being sick, not being able to work regular hours, and trying to maintain some sanity in Alex's life; Brie's twin brother. I worry for both of them so much so that I cry wanting to do more but being half dead myself. It's crushing me that I can't go to visit her in the state I'm in. I can forget the pain, but I can't change the fact that every pore in my skin is bubbling with residual chemo that could seriously complicate matters for anyone around me whom is sick. If only Brie were at least on a path through and out of this mess, we could all breathe just a little easier and coping with the day to day stuff wouldn't be so bad.
Holly's parents are en route and I've heard Alex has been able or will soon be able to visit too. What Brie needs most is healing. It's what we all need, really. So please, please lift Brie up today and pray for her today.
[old post]
I've posted before that she'd fallen ill on a vacation to Ireland and was found to have contracted an acute onset of apalastic anemia; in short, her bone marrow has ceased producing blood cells of all types. Most recently, she has been so unstable that she had to be isolated in the pediatric intensive care unit at Johns Hopkins Childrens Center fighting not only a short balance of white cells, but doing so against a reported three different types of bacteria floating rampant through her little 12 year old self... oh, and running at 100-degree plus fever. For a while, she was not able to breathe unassisted though it sounds today as that has been mitigated. I've heard she was awake last night and asking for Holly, her mom.
Holly needs our most sincere prayers as well. She's been painted into a corner rather quickly with Brie being sick, not being able to work regular hours, and trying to maintain some sanity in Alex's life; Brie's twin brother. I worry for both of them so much so that I cry wanting to do more but being half dead myself. It's crushing me that I can't go to visit her in the state I'm in. I can forget the pain, but I can't change the fact that every pore in my skin is bubbling with residual chemo that could seriously complicate matters for anyone around me whom is sick. If only Brie were at least on a path through and out of this mess, we could all breathe just a little easier and coping with the day to day stuff wouldn't be so bad.
Holly's parents are en route and I've heard Alex has been able or will soon be able to visit too. What Brie needs most is healing. It's what we all need, really. So please, please lift Brie up today and pray for her today.
Monday, June 2, 2008
taking back the blog
I made an honest mistake. I thought it would be helpful to someone else out there who may be dealing with this same cancer to see what I've been through. When the invitation came to join a blogger community that could be searched, I thought I'd join and get a little exposure; maybe help someone out. That's me.
But VerveEarth took over and I lost the ability to post. Until this gets fixed, I won't be using the service. One lengthy post at a particularly low point on my trek got lost and isn't even showing up as posted or draft saved anywhere. :(
People have emailed and asked in passing how it's going. To be honest, it's been hurting. A lot. I keep getting teased with days where I feel fantastic only to be sobbing a few hours later. This is the part of the rollercoaster I do not like... the wavy part. Give me the big drop I can see coming, any day. Just let me have a little time to prepare myself for what's next, please.
I hit a 10 on the pain scale earlier this week; shivering in shock and crying. :'( That allowed the insane idea of taking a dose of oxycodone sound reasonable. Trouble was, it didn't kick in any faster than the pain subsided on its own but I still got itchy all over and short tempered anyway. I need to flush the rest of those pills down the toilet.
I have a good idea of what and why there has been so much pain lately. And I am trying to execute a plan to help smooth things out. I am absolutely convinced the pain is an anal fissure that has not been able to heal on its own for a number of factors including being back on the chemo. I know my immune system is getting beat down with each hit so even just being careful with my diet and drinking LOTS of water is only going to do so much. I'm just hoping and praying I can keep up the fluid regimen and possibly keep any leftover chemo from concentrating on me as it passes through and knocking me down when I'm already weak.
I look at the calendar a lot lately and the weeks are counting down; just seven left now and four more rounds. Round nine starts day after tomorrow. Even though it's so close to the end, each one just towers over me blocking out anything I'm looking forward to and I lose it.
I do not want to go through this any more. :'(
But I don't really have a choice. :'(
But VerveEarth took over and I lost the ability to post. Until this gets fixed, I won't be using the service. One lengthy post at a particularly low point on my trek got lost and isn't even showing up as posted or draft saved anywhere. :(
People have emailed and asked in passing how it's going. To be honest, it's been hurting. A lot. I keep getting teased with days where I feel fantastic only to be sobbing a few hours later. This is the part of the rollercoaster I do not like... the wavy part. Give me the big drop I can see coming, any day. Just let me have a little time to prepare myself for what's next, please.
I hit a 10 on the pain scale earlier this week; shivering in shock and crying. :'( That allowed the insane idea of taking a dose of oxycodone sound reasonable. Trouble was, it didn't kick in any faster than the pain subsided on its own but I still got itchy all over and short tempered anyway. I need to flush the rest of those pills down the toilet.
I have a good idea of what and why there has been so much pain lately. And I am trying to execute a plan to help smooth things out. I am absolutely convinced the pain is an anal fissure that has not been able to heal on its own for a number of factors including being back on the chemo. I know my immune system is getting beat down with each hit so even just being careful with my diet and drinking LOTS of water is only going to do so much. I'm just hoping and praying I can keep up the fluid regimen and possibly keep any leftover chemo from concentrating on me as it passes through and knocking me down when I'm already weak.
I look at the calendar a lot lately and the weeks are counting down; just seven left now and four more rounds. Round nine starts day after tomorrow. Even though it's so close to the end, each one just towers over me blocking out anything I'm looking forward to and I lose it.
I do not want to go through this any more. :'(
But I don't really have a choice. :'(
Tuesday, May 6, 2008
We are what we eat
And with that in mind, be sure to avoid shrimp and boneless chicken. Also try not to fill up on bologna.
Ba da bing... I'm here all week. ;)
A few days of some seriously tiring experiences and a good amount of acute pain have brought this old adage back to mind this morning. As always I do not want to gross anyone out but I do need to put a lot of emphasis on getting much more water and real fiber into my diet. They're going to be the only things that really resolve the issue I've been having.
Not to say that things are not working. Au contraire, they're working well and I've been enjoying the ability to get out and about despite the impending resumption of chemotherapy this week. (I did manage to negotiate Wednesdays instead of Mondays so I won't have to miss my regular dinner out with my old highschool pals.)
That was last night, in fact, and I did not chose very wisely in what I had for dinner. Like most realizations, this one came upon me rather like a light being turned on; I've slipped back into eating very much the same poorly selected diet I've been eating for most of my adult life. Last night it was half a dozen buffalo wings, four mini cheeseburgers, a shot-glass sized carrot cake, and three glasses of iced tea (still not doing sodas and not really missing them). This after rather mindlessly snacking on probably twenty cups of kettle popcorn in the afternoon and only a glass of water to wash it down. Before that was three slices of take out chicken quesadilla, chips, a blob of guacamole and sour cream, and maybe a quarter cup of rather limp salsa... and nothing to drink. I honestly cannot remember drinking anything at all. Breakfast was a bag of crap from McDonalds I remember swearing off after seeing Super Size Me a year ago. Crap in this context is a Sausage McMuffin with egg and cheese, the ubiquitous hashbrowns, and a large decaf coffee (along with avoiding sodas, I have been pretty good about limiting my caffeine to iced tea).
I politely smirk when I hear my fit friends and acquaintances refer to meals as "fuel" and, in my head, I kinda giggle thinking, "Isn't that a little extreme?" But the analogy really is quite accurate as my tailpipe is going to show me today. You'd think that several days of tiring pain and irritation would wake me up to what a few friends and Dr. Grasso himself have been telling me...
Another part of the real solution for me is going to be losing the fat I'm still carrying around. Those of you whom have seen how thin I have become have been congratulatory and laughed with me that this isn't the diet plan I recommend. Since I started actually trying to get more exercise and make better meal choices waaaay back in January of 2007, I have lost right around 60 lbs. But I'm still shaped like a gourd and, again trying to avoid being graphic, where I'm still stored up for winter is all over the area that's been under the knife. This needs to change or just eating better is not going to cut it.
The ready made excuse goes back into my port tomorrow morning and it will be all too easy to let the chemo win. I will really have to try hard. Not having my old job assignment to look forward too, the ongoing long-term disability benefits gauntlet*, and the pain are already conspiring against me but it's only me that can punch through it. Yes, the light at the end is getting brighter, but for the moment I'm still in the tunnel. So again I'm asking for your support to make it out. :]
- Sco
* As for the benefits obstacle course, I've received some strange pieces of mail over the weekend that a) make no sense and b) alluded to a change in my health insurance coverage by hiding one sentence in seven pages of "certificate" statement.
The first one was a pair letters from the social security claims contractor congratulating me on a benefits award from Social Security (that I was told from the get go I would not get). I should be receiving a check and an official award letter from the SSA shortly. Blah blah blah. The only trouble with these two letters was it was I who told them I'd received a check and an award letter from SSA two weeks ago. I've been itching to fire these people since the end of March after a month of their incessant probing and far too many identity-risking edicts. People whom are truly sick or incapacitated must be getting steamrolled by these guys.
The second one was literally a certificate for me to provide to a new healthcare provider explaining my HIPAA rights (which the state of Maryland revokes with its own HIPAA-like law). Huh? I can't be turned down, etc, etc, if I applied in most states I have 30 days, if DC or Virginia I have 31 days, yadda, yadda, I only have 63 days to apply if I quit, COBRA this, FMLA that, you have receied this certificate because our records indicate your coverage with Kaiser has been terminated. What was that? Believe me, I'm on the horn before rush hour dies down this morning.
Ba da bing... I'm here all week. ;)
A few days of some seriously tiring experiences and a good amount of acute pain have brought this old adage back to mind this morning. As always I do not want to gross anyone out but I do need to put a lot of emphasis on getting much more water and real fiber into my diet. They're going to be the only things that really resolve the issue I've been having.
Not to say that things are not working. Au contraire, they're working well and I've been enjoying the ability to get out and about despite the impending resumption of chemotherapy this week. (I did manage to negotiate Wednesdays instead of Mondays so I won't have to miss my regular dinner out with my old highschool pals.)
That was last night, in fact, and I did not chose very wisely in what I had for dinner. Like most realizations, this one came upon me rather like a light being turned on; I've slipped back into eating very much the same poorly selected diet I've been eating for most of my adult life. Last night it was half a dozen buffalo wings, four mini cheeseburgers, a shot-glass sized carrot cake, and three glasses of iced tea (still not doing sodas and not really missing them). This after rather mindlessly snacking on probably twenty cups of kettle popcorn in the afternoon and only a glass of water to wash it down. Before that was three slices of take out chicken quesadilla, chips, a blob of guacamole and sour cream, and maybe a quarter cup of rather limp salsa... and nothing to drink. I honestly cannot remember drinking anything at all. Breakfast was a bag of crap from McDonalds I remember swearing off after seeing Super Size Me a year ago. Crap in this context is a Sausage McMuffin with egg and cheese, the ubiquitous hashbrowns, and a large decaf coffee (along with avoiding sodas, I have been pretty good about limiting my caffeine to iced tea).
I politely smirk when I hear my fit friends and acquaintances refer to meals as "fuel" and, in my head, I kinda giggle thinking, "Isn't that a little extreme?" But the analogy really is quite accurate as my tailpipe is going to show me today. You'd think that several days of tiring pain and irritation would wake me up to what a few friends and Dr. Grasso himself have been telling me...
Another part of the real solution for me is going to be losing the fat I'm still carrying around. Those of you whom have seen how thin I have become have been congratulatory and laughed with me that this isn't the diet plan I recommend. Since I started actually trying to get more exercise and make better meal choices waaaay back in January of 2007, I have lost right around 60 lbs. But I'm still shaped like a gourd and, again trying to avoid being graphic, where I'm still stored up for winter is all over the area that's been under the knife. This needs to change or just eating better is not going to cut it.
The ready made excuse goes back into my port tomorrow morning and it will be all too easy to let the chemo win. I will really have to try hard. Not having my old job assignment to look forward too, the ongoing long-term disability benefits gauntlet*, and the pain are already conspiring against me but it's only me that can punch through it. Yes, the light at the end is getting brighter, but for the moment I'm still in the tunnel. So again I'm asking for your support to make it out. :]
- Sco
* As for the benefits obstacle course, I've received some strange pieces of mail over the weekend that a) make no sense and b) alluded to a change in my health insurance coverage by hiding one sentence in seven pages of "certificate" statement.
The first one was a pair letters from the social security claims contractor congratulating me on a benefits award from Social Security (that I was told from the get go I would not get). I should be receiving a check and an official award letter from the SSA shortly. Blah blah blah. The only trouble with these two letters was it was I who told them I'd received a check and an award letter from SSA two weeks ago. I've been itching to fire these people since the end of March after a month of their incessant probing and far too many identity-risking edicts. People whom are truly sick or incapacitated must be getting steamrolled by these guys.
The second one was literally a certificate for me to provide to a new healthcare provider explaining my HIPAA rights (which the state of Maryland revokes with its own HIPAA-like law). Huh? I can't be turned down, etc, etc, if I applied in most states I have 30 days, if DC or Virginia I have 31 days, yadda, yadda, I only have 63 days to apply if I quit, COBRA this, FMLA that, you have receied this certificate because our records indicate your coverage with Kaiser has been terminated. What was that? Believe me, I'm on the horn before rush hour dies down this morning.
Friday, April 25, 2008
the home stretch...
'Just got home from a post-surgery followup with my oncologist. I told her how things were going and that I plan to increase the water and fiber in my diet. I need to make sure that I do so that things downstairs continue to improve. We talked about another PET/CT scan at/near the end of treatment and, if the same uptake shows up downstairs, we'll go in for another colonoscopy to see what's what. (Like I said before, I don't think I can do this all over again... so I'm praying it goes away, completely.) We negotiated a restart date for chemo and agreed upon May 5th. That will be a Monday instead of my old Tuesday date, so I'll be missing my dinners out with my pals. No biggie.
That date makes my last chemo round the week of July 13-19. It seems so far off, but I'll get there. That date will also be just a month shy of when this all started. Talk about a year in the life of! I don't know what I'll do, but I think there may be a party.
A little closer though that date will also leave me free for some extracurricular activities.
Jody will be helping her friend Jolene at the Maryland Sheep & Wool Festival the weekend of the 3rd and 4th. Jolene is in the process of assuming ownership of a local knitting supply store and is hoping to kick off her tenure with success at the festival. I will probably tag along to help out too.
I am anxiously looking forward to the weekend of the 17th and 18th to get out of the house and camp with my track friends at the second V-Dub Deliverance weekend track event. I'm not planning to do much more than camp and socialize, but if I'm feeling good, I may try for a ride-along. I will bring my helmet just in case. ;)
Meanwhile, I'm trying to get out of the house more often now that I've got some confidence. The weather has been great but opening windows and puttering around the yard has not been enough. Yeah, the chemo will knock me down a bit but I know just how much and I'm sure I'll get through.
That date makes my last chemo round the week of July 13-19. It seems so far off, but I'll get there. That date will also be just a month shy of when this all started. Talk about a year in the life of! I don't know what I'll do, but I think there may be a party.
A little closer though that date will also leave me free for some extracurricular activities.
Jody will be helping her friend Jolene at the Maryland Sheep & Wool Festival the weekend of the 3rd and 4th. Jolene is in the process of assuming ownership of a local knitting supply store and is hoping to kick off her tenure with success at the festival. I will probably tag along to help out too.
I am anxiously looking forward to the weekend of the 17th and 18th to get out of the house and camp with my track friends at the second V-Dub Deliverance weekend track event. I'm not planning to do much more than camp and socialize, but if I'm feeling good, I may try for a ride-along. I will bring my helmet just in case. ;)
Meanwhile, I'm trying to get out of the house more often now that I've got some confidence. The weather has been great but opening windows and puttering around the yard has not been enough. Yeah, the chemo will knock me down a bit but I know just how much and I'm sure I'll get through.
Monday, April 21, 2008
so far so good... and a little clarity
First things first. No, I will not be going back to my old job assignment but I am still employed. This may be a strange thing for the non-contractors out there to grasp. Essentially, I am a hired gun who gets sent to work a specific job for a while. Though I may work in someone's building, my paycheck comes from my company whom was contracted to put workers on a specific task. My specific task, the one I was really hoping to get back to soon, has been contracted to another company... so that means I have to stop and let someone from that company take over. I really really really liked that job, but I'm not being hung out to dry. I'll get to work something else now.
It's been a bit more than a week home now and, knock on wood, it's going okay. I'm eating pretty much anything I want now still saving uncooked fruits and vegetables. The liquid diet quickly changed to toast and some fiber much to my better comfort. I'm debating dinner out tonight with some friends, but I think I'll be okay. I've got to try it sometime!
It's been a bit more than a week home now and, knock on wood, it's going okay. I'm eating pretty much anything I want now still saving uncooked fruits and vegetables. The liquid diet quickly changed to toast and some fiber much to my better comfort. I'm debating dinner out tonight with some friends, but I think I'll be okay. I've got to try it sometime!
Wednesday, April 16, 2008
Potty training... or... Kick 'em when they're down
Greetings.
As you may imagine, I feel lousy thus the lame 60's Batman show title. I have to honestly admit that today has been okay so far but I got some pretty hard news to swallow; I will not be getting my job back.
No, despite the hoops I was jumping with the company and the long-term benefits insurance and the seriously invasive Social Security benefits claim "service," my contract was awarded to another team yesterday. I got the news this morning. Since my company isn't part of the team that won, I'm officially out of my job. I need to get well enough to go clean out my desk sometime soon.
I'm still employed... for the remaining whatever number of weeks my long term insurance was limited to... but I won't get to go back to my assignment. That one goal keeping me moving is now gone. This is just the icing on the poop cake I've been served. If it's not clear, I am not happy right now. Not in the least.
Here at home though I was able to clean and change the incision both Sunday and Monday evenings without any help. Knock on wood I've won more of the fights for control than lost and made it to the bathroom on time; no major disasters, thank you. It has dawned on me I may be potty-training all over again like when I was a little baby. It's not like it's a skill we are taught or even something babies can learn except by doing it. Gotta hold it. I think I'm just learning that all over again.
I'm trying to be funny about it but in all seriousness this whole thing is making me feel like less and less of a man every day. This crap just keeps pecking at me. :(
As you may imagine, I feel lousy thus the lame 60's Batman show title. I have to honestly admit that today has been okay so far but I got some pretty hard news to swallow; I will not be getting my job back.
No, despite the hoops I was jumping with the company and the long-term benefits insurance and the seriously invasive Social Security benefits claim "service," my contract was awarded to another team yesterday. I got the news this morning. Since my company isn't part of the team that won, I'm officially out of my job. I need to get well enough to go clean out my desk sometime soon.
I'm still employed... for the remaining whatever number of weeks my long term insurance was limited to... but I won't get to go back to my assignment. That one goal keeping me moving is now gone. This is just the icing on the poop cake I've been served. If it's not clear, I am not happy right now. Not in the least.
Here at home though I was able to clean and change the incision both Sunday and Monday evenings without any help. Knock on wood I've won more of the fights for control than lost and made it to the bathroom on time; no major disasters, thank you. It has dawned on me I may be potty-training all over again like when I was a little baby. It's not like it's a skill we are taught or even something babies can learn except by doing it. Gotta hold it. I think I'm just learning that all over again.
I'm trying to be funny about it but in all seriousness this whole thing is making me feel like less and less of a man every day. This crap just keeps pecking at me. :(
Friday, April 11, 2008
Surgery went well!
Hi all! Jody here to fill you in on John. He had surgery yesterday to reverse his ileostomy. I'm happy to say that everything went very well!
We had to get up extra early to arrive at GBMC hospital by 5:30 am. He was wheeled back into surgery around 8am and was finished by about 10:30. So - nice and short - not like last time!!
He had a great first day too - he ate all his lunch and dinner and had no nausea. He did have a rough night - but mostly because they kept coming in at all hours to take his vitals, blood, etc. He was definitely ready to come home - if only to get some sleep!
Today is a big day! It's John's first poo day! Happy poo day John! I told him I'd get him a cake for his first poo day - but the cake may have to wait a while as he is on a liquid diet for a while. Do you think I can write "Happy Poo Day" on some Jello? hehehe
More good news was just delivered as I was writing this. His doctor (Dr Grasso) just came to see him and he says he's ok to go home today! Yay! So - hopefully we will be out of here soon. That is fantastic news!
Thanks to everyone for their thoughts and prayers - we appreciate all of them.
-Jody
We had to get up extra early to arrive at GBMC hospital by 5:30 am. He was wheeled back into surgery around 8am and was finished by about 10:30. So - nice and short - not like last time!!
He had a great first day too - he ate all his lunch and dinner and had no nausea. He did have a rough night - but mostly because they kept coming in at all hours to take his vitals, blood, etc. He was definitely ready to come home - if only to get some sleep!
Today is a big day! It's John's first poo day! Happy poo day John! I told him I'd get him a cake for his first poo day - but the cake may have to wait a while as he is on a liquid diet for a while. Do you think I can write "Happy Poo Day" on some Jello? hehehe
More good news was just delivered as I was writing this. His doctor (Dr Grasso) just came to see him and he says he's ok to go home today! Yay! So - hopefully we will be out of here soon. That is fantastic news!
Thanks to everyone for their thoughts and prayers - we appreciate all of them.
-Jody
Sunday, April 6, 2008
For Jody
Today is the fifth anniversary of our wedding date. So much has happened in our lives since then with the reason for this blog only being the latest. I want to take this time to express just what being married to Jody has meant to me.
Little did I know I was exchanging emails with the girl I'd marry and come to love so much. I was pretty selfish in those days. Who am I kidding? I still am. Getting to know one another before we actually met, she wrote and asked me a poignant question that still makes me think to this day. Her question was, "What makes you smile?"
I do not honestly remember my answer but I do remember it made me think. We met at a local Thai restaurant based solely on the discovery that neither of us had really ever tried that kind of food. I remember trying very hard to not monopolize the conversation in response to being nervous about meeting her for the first time. She told me later she tried very hard not to judge me based upon the ugly sweater I was wearing; my favorite sweater at the time.
I began to learn and like more and more about her and within only a few months of dating, we arranged to vacation together in London. It was my first real trip outside the country since I was a kid and really only my first vacation as a grownup. We traveled well together and had a blast. Coming home though, I realized I'd been pursuing her for the wrong reasons and we broke up about a month later.
Then realizing my mistake I apologized for what I'd done and asked if we could start over. This was one of the first times of many I would see that Jody knew how to truly forgive an offense.
Our politics differed on the surface and she'll be the last to admit we really agree on what solutions we'd rather see to so many issues. We dated for another two years more taking in more new experiences and tastes and it dawned upon me that I could not remember life without her. Much less even want to live life without her.
You know the story of how I proposed and though I tried to make it memorable, I know she'd have said yes even if I'd asked while washing dishes or waiting for a light to turn green.
Our wedding day was a small miracle sandwiched in between two nasty days of cold rain and sleet. Our honeymoon was another adventure just adding to the memories we've collected together. Returning home, marriage began and we had some adjusting to do.
Jody has been so much better at it than I have, I am sorry to admit. And she has endured so much in just these short five years. I wish above all else that I could take some of those times away; not for my own comfort but for hers. She is one tough girl to have not only withstood those storms, but to have stayed beside me and steadied me when I've been shaken. I've said it before and I will say it again... I can never repay her the debt that I owe and I pray I never have to. She has been through enough already with me.
Yes, -through- all of those and stronger than ever. She is many things to me beyond my brave taste tester, tourguide, and girlfriend. She is more than my date for an evening or my fiance planning our wedding. She is more than the girl who read stories to me until I fell asleep or the hand I grab when we're climbing a hill looking for buried treasure. She is more than my nurse as we both ride out this mind numbing cancer treatment.
She is my best friend and the one person I need to see or talk to every day. She is uncommonly strong and resilient against the worst. She is faithful and loving and beautiful and fun and she deserves better than me. She is my wife and I love her more than I can ever say.
I love you, my Sweets. I am honored to be your husband.
Little did I know I was exchanging emails with the girl I'd marry and come to love so much. I was pretty selfish in those days. Who am I kidding? I still am. Getting to know one another before we actually met, she wrote and asked me a poignant question that still makes me think to this day. Her question was, "What makes you smile?"
I do not honestly remember my answer but I do remember it made me think. We met at a local Thai restaurant based solely on the discovery that neither of us had really ever tried that kind of food. I remember trying very hard to not monopolize the conversation in response to being nervous about meeting her for the first time. She told me later she tried very hard not to judge me based upon the ugly sweater I was wearing; my favorite sweater at the time.
I began to learn and like more and more about her and within only a few months of dating, we arranged to vacation together in London. It was my first real trip outside the country since I was a kid and really only my first vacation as a grownup. We traveled well together and had a blast. Coming home though, I realized I'd been pursuing her for the wrong reasons and we broke up about a month later.
Then realizing my mistake I apologized for what I'd done and asked if we could start over. This was one of the first times of many I would see that Jody knew how to truly forgive an offense.
Our politics differed on the surface and she'll be the last to admit we really agree on what solutions we'd rather see to so many issues. We dated for another two years more taking in more new experiences and tastes and it dawned upon me that I could not remember life without her. Much less even want to live life without her.
You know the story of how I proposed and though I tried to make it memorable, I know she'd have said yes even if I'd asked while washing dishes or waiting for a light to turn green.
Our wedding day was a small miracle sandwiched in between two nasty days of cold rain and sleet. Our honeymoon was another adventure just adding to the memories we've collected together. Returning home, marriage began and we had some adjusting to do.
Jody has been so much better at it than I have, I am sorry to admit. And she has endured so much in just these short five years. I wish above all else that I could take some of those times away; not for my own comfort but for hers. She is one tough girl to have not only withstood those storms, but to have stayed beside me and steadied me when I've been shaken. I've said it before and I will say it again... I can never repay her the debt that I owe and I pray I never have to. She has been through enough already with me.
Yes, -through- all of those and stronger than ever. She is many things to me beyond my brave taste tester, tourguide, and girlfriend. She is more than my date for an evening or my fiance planning our wedding. She is more than the girl who read stories to me until I fell asleep or the hand I grab when we're climbing a hill looking for buried treasure. She is more than my nurse as we both ride out this mind numbing cancer treatment.
She is my best friend and the one person I need to see or talk to every day. She is uncommonly strong and resilient against the worst. She is faithful and loving and beautiful and fun and she deserves better than me. She is my wife and I love her more than I can ever say.
I love you, my Sweets. I am honored to be your husband.
Wednesday, April 2, 2008
Are we there yet?
Can I once again tell you all just how tired I am of this whole deal? Yeesh...
Yesterday was a waypoint. I had appointments for a pre-surgery checkup and a post-round-6 oncology visit. I've been getting more absent minded and left my pre-surgery papers at home (five minutes away) and no matter how many times I offered, they wouldn't let me leave to go retrieve them. Finally, after calling the wrong surgeon, they let me jog back home and grab the one page order sheet... maybe the chemo is affecting other people. ;)
The oncology visit held the promise of PET/CT results...
There was good news and meh news. The good news is the metastases seen back in August are gone except for a handful in my lungs too small to characterize. The meh news is there was "uptake" (sugar that looks like cancer cells chowing down) at the very site of the j-pouch. No firm explanation was given though the analyst noted the site had lots of sutures while also noting other sites with sutures didn't uptake this same way. My optimism is running thin but is giving me hope that since that site had to be worked on for so much longer than the others, maybe it's just taking longer to fully heal and the uptake there is just evidence of healing still going on; not to mention healing has been slowed by chemo. But there is the possibility that not all of the tumor was removed. My optimism rebuts with yeah, sure, but my CEA is now too low to measure and all the metastatic spread is gone. I can't be sure and I'm praying through tears that it's just slow healing. I don't think I can do this all over again.
Even if that's the case, I still have work to do. One of the things I need to try to share is what I learned about Lynch Syndrome. Dr. Lee had asked me if I had any siblings or children because she'd learned of a DNA test that could help identify anyone related to me at risk for the same crap. In a matter of minutes, I read through the literature from Myriad (the lab that does the test) and was stunned.
There is a genetic mutation that, if present, poses an 80% likelihood of that person developing colo-rectal or endometrial cancer well before age 50 like most screening recommendations suggest. Finding it early may mean more frequent colonoscopies for that person, but it may also mean no surgical gauntlet like the one I'm running.
Myriad is also able to test for other genetic markers that may indicate other cancers like melanoma, pancreatic, ovarian, and breast cancers. Please visit their website and drop through the Hereditary Cancer Testing side for Patients and Caregivers. They have some brief questionnaires that can help you determine if you ought to have your doctor order one or more of the tests. For those of us who don't have or can't get family health histories, these tests may mean we're able to stop the train before we get to the bridge that's out.
Meanwhile, back in Real Life, Jody had to fly away at the drop of a hat to New Orleans for some hands on help. Her superiors had known the request was pending but did not manage to get her the specifics until the day before she was needed there. This on the eve of our fifth anniversary and me heading in for the reversal surgery. No, she was not going to be able to stay for two weeks. Had no one even looked at her calendar?
Even that got off to a bumpy start. I'm already lonely and chemo-bummed but now I lose my wife for the week. :( Want some more bumps? Jody's teammate, Wes, was to go along as well but the poor guy had an acute attack of something serious after I got them to the airport. The poor guy lost his lunch before boarding and wisely decided to stay home. I ran back up to get him home and we only made it halfway. I felt so bad for him and was genuinely weighing whether I should continue home or take him to the hospital. Turns out the rest of his family came down with it too after a younger member brought it home over the weekend. I really hope he's doing better... and that Southwest will manage to get his bags back to him.
On the brighter side of things, I've learned my young friend, Bree, is not only back in the US but is doing well at one of Johns Hopkins facilities. I don't know where yet, but she's had visitors and I mean to find out where she's at and go see her myself. She's got a port now, just like me, and she's not feeling very hungry, just like me. I want to encourage her and her brother and acknowledge what I know the whole family is feeling; this is not fair. But while that's true, we can put our faith in believing that it is where we're supposed to be and what we're supposed to be doing. And God has a way of assuring us of this too so even though I might be scared about that ambiguity on my PET/CT report, I can ask for help to get me through. I hope I can show that to Bree. Who knows? Maybe she's going to help me instead? :')
Please, pray for us. And I need to ping Dave again to see where he's at too.
Yesterday was a waypoint. I had appointments for a pre-surgery checkup and a post-round-6 oncology visit. I've been getting more absent minded and left my pre-surgery papers at home (five minutes away) and no matter how many times I offered, they wouldn't let me leave to go retrieve them. Finally, after calling the wrong surgeon, they let me jog back home and grab the one page order sheet... maybe the chemo is affecting other people. ;)
The oncology visit held the promise of PET/CT results...
There was good news and meh news. The good news is the metastases seen back in August are gone except for a handful in my lungs too small to characterize. The meh news is there was "uptake" (sugar that looks like cancer cells chowing down) at the very site of the j-pouch. No firm explanation was given though the analyst noted the site had lots of sutures while also noting other sites with sutures didn't uptake this same way. My optimism is running thin but is giving me hope that since that site had to be worked on for so much longer than the others, maybe it's just taking longer to fully heal and the uptake there is just evidence of healing still going on; not to mention healing has been slowed by chemo. But there is the possibility that not all of the tumor was removed. My optimism rebuts with yeah, sure, but my CEA is now too low to measure and all the metastatic spread is gone. I can't be sure and I'm praying through tears that it's just slow healing. I don't think I can do this all over again.
Even if that's the case, I still have work to do. One of the things I need to try to share is what I learned about Lynch Syndrome. Dr. Lee had asked me if I had any siblings or children because she'd learned of a DNA test that could help identify anyone related to me at risk for the same crap. In a matter of minutes, I read through the literature from Myriad (the lab that does the test) and was stunned.
There is a genetic mutation that, if present, poses an 80% likelihood of that person developing colo-rectal or endometrial cancer well before age 50 like most screening recommendations suggest. Finding it early may mean more frequent colonoscopies for that person, but it may also mean no surgical gauntlet like the one I'm running.
Myriad is also able to test for other genetic markers that may indicate other cancers like melanoma, pancreatic, ovarian, and breast cancers. Please visit their website and drop through the Hereditary Cancer Testing side for Patients and Caregivers. They have some brief questionnaires that can help you determine if you ought to have your doctor order one or more of the tests. For those of us who don't have or can't get family health histories, these tests may mean we're able to stop the train before we get to the bridge that's out.
Meanwhile, back in Real Life, Jody had to fly away at the drop of a hat to New Orleans for some hands on help. Her superiors had known the request was pending but did not manage to get her the specifics until the day before she was needed there. This on the eve of our fifth anniversary and me heading in for the reversal surgery. No, she was not going to be able to stay for two weeks. Had no one even looked at her calendar?
Even that got off to a bumpy start. I'm already lonely and chemo-bummed but now I lose my wife for the week. :( Want some more bumps? Jody's teammate, Wes, was to go along as well but the poor guy had an acute attack of something serious after I got them to the airport. The poor guy lost his lunch before boarding and wisely decided to stay home. I ran back up to get him home and we only made it halfway. I felt so bad for him and was genuinely weighing whether I should continue home or take him to the hospital. Turns out the rest of his family came down with it too after a younger member brought it home over the weekend. I really hope he's doing better... and that Southwest will manage to get his bags back to him.
On the brighter side of things, I've learned my young friend, Bree, is not only back in the US but is doing well at one of Johns Hopkins facilities. I don't know where yet, but she's had visitors and I mean to find out where she's at and go see her myself. She's got a port now, just like me, and she's not feeling very hungry, just like me. I want to encourage her and her brother and acknowledge what I know the whole family is feeling; this is not fair. But while that's true, we can put our faith in believing that it is where we're supposed to be and what we're supposed to be doing. And God has a way of assuring us of this too so even though I might be scared about that ambiguity on my PET/CT report, I can ask for help to get me through. I hope I can show that to Bree. Who knows? Maybe she's going to help me instead? :')
Please, pray for us. And I need to ping Dave again to see where he's at too.
Thursday, March 27, 2008
A pleasant surprise
So I wake up this morning and it's the end of round six. No friendly beeping just yet so I lounge for a bit and try to stay warm. This one hit a little harder than five, but nothing like the earlier rounds. That and this is the last one for a while since we're taking a break before the reversal! YAY!
Jody drove me in because the chills had my right arm and fingers on the fritz and I had to admit I wasn't feeling confident to drive myself. I was fine once I warmed up. We get back home and my phone rings with an unknown number... who can it be?
A familiar voice asks me if I'm me and says it's my oooold friend Chris calling. He's been stood up for a conference call, has some time to kill before a meeting, and has just hit the ground at BWI... am I free for lunch? Heck yeah!
I scrambled to remember the last time I'd even seen Chris in person and I still can't remember, but it was great to spend some time catching up today. We both lamented not staying in better touch, but that will be amended. Almost naturally we wondered what's happened to the others in our bunch and we only had bits and pieces to trade. I felt bad Chris wasn't all the way up to speed with the whole cancer thing, but hey, I'm gonna make it. ;)
We'll have to collaborate on finding those other old friends and have ourselves a little reunion. :D
Jody drove me in because the chills had my right arm and fingers on the fritz and I had to admit I wasn't feeling confident to drive myself. I was fine once I warmed up. We get back home and my phone rings with an unknown number... who can it be?
A familiar voice asks me if I'm me and says it's my oooold friend Chris calling. He's been stood up for a conference call, has some time to kill before a meeting, and has just hit the ground at BWI... am I free for lunch? Heck yeah!
I scrambled to remember the last time I'd even seen Chris in person and I still can't remember, but it was great to spend some time catching up today. We both lamented not staying in better touch, but that will be amended. Almost naturally we wondered what's happened to the others in our bunch and we only had bits and pieces to trade. I felt bad Chris wasn't all the way up to speed with the whole cancer thing, but hey, I'm gonna make it. ;)
We'll have to collaborate on finding those other old friends and have ourselves a little reunion. :D
Tuesday, March 25, 2008
halfway there...
It's really a lot more than halfway, but this is round six of twelve so it is half of the chemo. A good deal has transpired so let me catch up once again.
For openers, I got the celebrity treatment over Easter weekend visiting my inlaws. By Easter Sunday, everyone at church knew Jody and I had made the trip and were anxious to see me. I was a little embarrassed for all the attention, but the love coming from that church aimed at Jody and I has been nothing short of awesome. I really enjoyed seeing everyone and sharing my thanks for all of their support. You guys are a very big part of getting us all through this, not just me. :)
I have to admit I was a bit fried for the weekend. I'd pushed myself waaaay too hard last Monday on a trek to the Jersey shore for a sweetheart deal on a rollbar for the BMW. With work still eluding me (more below) I've had more than my fair share of time to study some of the problems and solutions for the back end of the track car; namely the fuel leak. It hasn't reared its head since back in October, but I worry that it needs attention rather than just thinking it has gone away. Anywho, I borrowed Dad's truck and made the trip. I got to enjoy lunch at White Castle along the way and took a roundabout route back through Philly to stop at Pat's King of Steaks. The website may be lame, but the steak sandwiches are THE BEST. 1237 E Passyunk Ave in Philly... add this to your bucket list and definitely get yours "with cheese."
I'm rambling...
Yes, I pushed way too hard that day and I didn't really stop on Tuesday. With Dad's keys in hand I loaded up and made a run to the landfill. This all caught up with me by Tuesday evening and I was dead all day Wednesday. I managed to get packed for the weekend and then suddenly, it was here.
Trying to drive to Easton Thursday evening was a big challenge. Poor Hurley was terribly frightened either by his first nighttime ride, the radio, or the wind blowing our little Escape all over the highway. Jody eventually got into the back seat and was able to calm him down while I drove and spent what little energy I'd recovered. Driving in high winds can be treacherous... we didn't make it home to Easton before 11pm.
I'd missed a call from my boss alluding to something I needed to do to call the employee service people or HR and we've played phone tag since. We'd agreed (reluctantly on my part) to go ahead and wait until after the April 10th surgery date before trying to get me back in the doors again. That -does- buy us time to figure out any impact my less than 20 hours a week schedule may have on my pension and retirement stuff. There -has- to have been a precedent for what I'm asking to do; Lockheed is too big to have never hired a cancer patient.
That has been the least of my worries though and I want to ask you guys to add a young friend of mine to your prayers.
Her name is Gabrielle though she goes by Bree. She and her twin brother, Alex, are newly minted teenagers having just turned 12. They take an annual trip to Ireland with their father but this year has been very, very different. You see, Bree reached that time in a girls life where her biology changed and womanhood began. Unfortunately, this time seems to have coincided with aplastic anemia that forced her flight home to return to Ireland last Thursday. Bree was gravely ill and the anemia was not yet known.
There were lots of tears and prayers and the initial scare of leukemia was ruled out. Her mom, Holly, had run the gauntlet to get emergency permission to enter Ireland as she has never held a passport before. That and the flight were tough enough, but managing a sick daughter and a frightened son a whole ocean away did not help. Holly sounded like she was holding it together well when we did get to speak to her.
And though the leukemia was ruled out, the aplasia isn't that much better. It a nutshell, Bree's bone marrow may be shutting down and failing to produce -all- types of blood cells; red, white, and platelets. She needs a miracle. And if there was a little girl that ever deserved one, it's her. Jody and I will do anything for Bree, but right now all we can do is pray. We believe she's in the best hands and we prayed she would be. As if to answer our prayers before we asked, Bree's doctor in Ireland has been studying aplasia and recently published a text on treating the disease... co-authored with a doctor here in Maryland at Johns Hopkins. Guess whom Bree's doctor will be when she is able to get home? ;)
More later. I'm at the oncologist now using their wireless network but my battery is getting low. TTFN!
For openers, I got the celebrity treatment over Easter weekend visiting my inlaws. By Easter Sunday, everyone at church knew Jody and I had made the trip and were anxious to see me. I was a little embarrassed for all the attention, but the love coming from that church aimed at Jody and I has been nothing short of awesome. I really enjoyed seeing everyone and sharing my thanks for all of their support. You guys are a very big part of getting us all through this, not just me. :)
I have to admit I was a bit fried for the weekend. I'd pushed myself waaaay too hard last Monday on a trek to the Jersey shore for a sweetheart deal on a rollbar for the BMW. With work still eluding me (more below) I've had more than my fair share of time to study some of the problems and solutions for the back end of the track car; namely the fuel leak. It hasn't reared its head since back in October, but I worry that it needs attention rather than just thinking it has gone away. Anywho, I borrowed Dad's truck and made the trip. I got to enjoy lunch at White Castle along the way and took a roundabout route back through Philly to stop at Pat's King of Steaks. The website may be lame, but the steak sandwiches are THE BEST. 1237 E Passyunk Ave in Philly... add this to your bucket list and definitely get yours "with cheese."
I'm rambling...
Yes, I pushed way too hard that day and I didn't really stop on Tuesday. With Dad's keys in hand I loaded up and made a run to the landfill. This all caught up with me by Tuesday evening and I was dead all day Wednesday. I managed to get packed for the weekend and then suddenly, it was here.
Trying to drive to Easton Thursday evening was a big challenge. Poor Hurley was terribly frightened either by his first nighttime ride, the radio, or the wind blowing our little Escape all over the highway. Jody eventually got into the back seat and was able to calm him down while I drove and spent what little energy I'd recovered. Driving in high winds can be treacherous... we didn't make it home to Easton before 11pm.
I'd missed a call from my boss alluding to something I needed to do to call the employee service people or HR and we've played phone tag since. We'd agreed (reluctantly on my part) to go ahead and wait until after the April 10th surgery date before trying to get me back in the doors again. That -does- buy us time to figure out any impact my less than 20 hours a week schedule may have on my pension and retirement stuff. There -has- to have been a precedent for what I'm asking to do; Lockheed is too big to have never hired a cancer patient.
That has been the least of my worries though and I want to ask you guys to add a young friend of mine to your prayers.
Her name is Gabrielle though she goes by Bree. She and her twin brother, Alex, are newly minted teenagers having just turned 12. They take an annual trip to Ireland with their father but this year has been very, very different. You see, Bree reached that time in a girls life where her biology changed and womanhood began. Unfortunately, this time seems to have coincided with aplastic anemia that forced her flight home to return to Ireland last Thursday. Bree was gravely ill and the anemia was not yet known.
There were lots of tears and prayers and the initial scare of leukemia was ruled out. Her mom, Holly, had run the gauntlet to get emergency permission to enter Ireland as she has never held a passport before. That and the flight were tough enough, but managing a sick daughter and a frightened son a whole ocean away did not help. Holly sounded like she was holding it together well when we did get to speak to her.
And though the leukemia was ruled out, the aplasia isn't that much better. It a nutshell, Bree's bone marrow may be shutting down and failing to produce -all- types of blood cells; red, white, and platelets. She needs a miracle. And if there was a little girl that ever deserved one, it's her. Jody and I will do anything for Bree, but right now all we can do is pray. We believe she's in the best hands and we prayed she would be. As if to answer our prayers before we asked, Bree's doctor in Ireland has been studying aplasia and recently published a text on treating the disease... co-authored with a doctor here in Maryland at Johns Hopkins. Guess whom Bree's doctor will be when she is able to get home? ;)
More later. I'm at the oncologist now using their wireless network but my battery is getting low. TTFN!
Monday, March 10, 2008
Ha ha!
Not like you think though... more like Nelson from The Simpsons.
I mentioned the April 10th reversal surgery might wrench the works of me getting back to work. Little did I know there might be one thrown back at me.
The reduced schedule I was hoping to be able to work was actually acceptable to all parties involved. I was about to be officially told I could report back next Monday and I was happy. However, that schedule was not 20 hours a week so instead of being a "part time" employee, my official status would be "casual." What is not known right now is what being a casual employee might mean to my history with Lockheed or if it might mess up my pension or possibly my ability to become a full time employee again. There may be a risk I'm not willing to take, but none of us are perfectly clear on what might happen. The best thing to do right now is... wait.
I just want to get back to my job.
However, if that means goofing up my retirement or screwing myself out of tenured time (more vacation days!) then bank on me staying home until chemo is finished. It's just not worth it.
I will remain patient and hope the answers we're looking for mean I can work the reduced schedule. If it doesn't I will be okay with it. But, like other disappointing news has been, I'm not okay with it right now. I need to get somewhere cool though, and fast. Round five of the chemo goes into me tomorrow and I already know what chemo mixed with worry feels like... super crappy. :(
I mentioned the April 10th reversal surgery might wrench the works of me getting back to work. Little did I know there might be one thrown back at me.
The reduced schedule I was hoping to be able to work was actually acceptable to all parties involved. I was about to be officially told I could report back next Monday and I was happy. However, that schedule was not 20 hours a week so instead of being a "part time" employee, my official status would be "casual." What is not known right now is what being a casual employee might mean to my history with Lockheed or if it might mess up my pension or possibly my ability to become a full time employee again. There may be a risk I'm not willing to take, but none of us are perfectly clear on what might happen. The best thing to do right now is... wait.
I just want to get back to my job.
However, if that means goofing up my retirement or screwing myself out of tenured time (more vacation days!) then bank on me staying home until chemo is finished. It's just not worth it.
I will remain patient and hope the answers we're looking for mean I can work the reduced schedule. If it doesn't I will be okay with it. But, like other disappointing news has been, I'm not okay with it right now. I need to get somewhere cool though, and fast. Round five of the chemo goes into me tomorrow and I already know what chemo mixed with worry feels like... super crappy. :(
Thursday, March 6, 2008
Wednesday, March 5, 2008
whatever... must post good news for a change
I've tried and tried with the video and only managed to get a hyper-spaced video of me with sound at normal speed so I'm giving up for now. I have good news to share so text will have to suffice.
Yesterday I had a pleasant meeting with Dr. Lee and learned my CEA count is now 0.5. Booyah! That's what normal adults have; people with no cancer. With it now too low to monitor, we scheduled a PET scan for March 20th which will be late enough in the week between rounds five and six that I'll probably be feeling okay to get around. That will also be ahead of the reversal surgery which I anticipate being able to schedule soon because...
Today I had a flouroscope exam. It involved an enema and it was not as bad as I thought it would be. I made it through with just a little hiccup but I am thankful it is over with. Discussing the observed contrast, the doctor whom took the pictures concluded he saw no indication of any leak as Dr. Grasso was seeking. I have the films and I will drop them off tomorrow because, frankly, my own bravery only lasted so long mixed with a sour stomach and frayed nerves.
Dr. Lee upped my Protonix acknowledging I am a big guy and that I shouldn't be so bubbly unless I'm not getting enough dope. I'm going to anticipate next weeks downtime with plenty of bland items on the menu. We're on the homestretch now so I just need to hang in there.
I will get this video thing down though. If teenagers can post videos of themselves hitting a burning honeydew melon with a baseball bat, then I can figure this out too.
Yesterday I had a pleasant meeting with Dr. Lee and learned my CEA count is now 0.5. Booyah! That's what normal adults have; people with no cancer. With it now too low to monitor, we scheduled a PET scan for March 20th which will be late enough in the week between rounds five and six that I'll probably be feeling okay to get around. That will also be ahead of the reversal surgery which I anticipate being able to schedule soon because...
Today I had a flouroscope exam. It involved an enema and it was not as bad as I thought it would be. I made it through with just a little hiccup but I am thankful it is over with. Discussing the observed contrast, the doctor whom took the pictures concluded he saw no indication of any leak as Dr. Grasso was seeking. I have the films and I will drop them off tomorrow because, frankly, my own bravery only lasted so long mixed with a sour stomach and frayed nerves.
Dr. Lee upped my Protonix acknowledging I am a big guy and that I shouldn't be so bubbly unless I'm not getting enough dope. I'm going to anticipate next weeks downtime with plenty of bland items on the menu. We're on the homestretch now so I just need to hang in there.
I will get this video thing down though. If teenagers can post videos of themselves hitting a burning honeydew melon with a baseball bat, then I can figure this out too.
Tuesday, March 4, 2008
Wednesday, February 27, 2008
video blog... denied
I tried to make a new post yesterday using an embedded video to actually show y'all how I'm doing. It was a good day for being an on chemo day. I got some nice surprises to offset the early onset of our friendly side effects, the least of which being a new laptop. :D
And ya know, I really wish Blogger included little smiley graemlins like the various web forums do.
Yes, I bought a new Dell Inspiron 1525. It was a top 5/10 pick in several recent pc editorial reviews and I know the Dell outlet site often has super bargains on refurbs and new orders not delivered; I paid $150 less than the current Dell $300 off code that's on the retail site now. That's nearly half off! Bada bing! This one was a refurb, but it does carry a years warranty and I have strong doubts I'll need it. 1.8GHz dual core, 1Gb memory, 160Gb storage, a/b/g/n wireless, Bluetooth, DVDR+/-, firewire, 15.4" widescreen, Windows Vista Home Premium edition, and some tres cool extras... twin headphone jacks for Jody and I to both enjoy a movie when traveling, a media access that starts a micro operating system to get onto the disk without starting Windows, and a 2 megapixel webcam hidden in the screen frame barely the diameter of a cheap ballpoint pen shaft. So yeah, that brought a smile to my face. :D
I got it out of the box and started setting it up for our network. First came permission to use the network then came the ubiquitous updates (only 9 since this box was built), then anti-virus (ask me privately if you really want to know my choice), and Firefox because IE 7 is a spitefully ugly tool. VAG-COM came next because it was the reason for buying a new laptop. The old one had served me well but the battery would not hold a charge making the VAG-COM cable useless when I needed to scan for trouble in the GTI last week (airbag fault!). The old one was a buy from back before Jody and I were even engaged so it was time for a new one.
In the midst of setting up the new machine I got a phonecall from Cigna... specifically my work incentive program officer. We'd not spoken yet, directly, though she was aware from comments on my case that I am seeking to get back to work. We discussed the resistance I'd encountered policy-wise from both Cigna and Lockheed. When I explained I was getting ready to campaign both my company and customer management chains to get their okay for my proposed schedule (one week on, one week mostly off) she agreed that would be workable. :o
See? There just isn't a way that :o conveys my total shock at hearing that news. Help me out, Schultzie...
So we chatted a little more for a whopping 20 minutes and by the end, I had just a slight change to make to my lobbying plan to get back to work. I can go back -today- if I want to. All I need to do is send in any statements for pay I earn and they can be evaluated retroactively.
HOT DIGGETY DOG!!!
That was possibly the best twenty minutes of the the last two months of my life.
So yeah, that brought a smile to my face too. I carved out a new area for cancer stuff on the new laptop and started with my lobby outline. I will solicit letters of recommendation from all of my doctors and management peeps and forward any that I receive on to both Lockheed and Cigna. Cigna will also get their own copy of Dr. Lee's initial part time release/limitations on me working at all. That will keep me smiling today while the 5FU drips away.
I had to blog about it but hey, why not try out the little webcam in the process? It worked well producing a four minute video (I outlined what I wanted to share like a little script) that chewed up 1.8G of storage. D'oh. Waaaaay too big for Blogger to swallow. I tried watering down the video capture settings but only got down to 350Mb which was still too big. I will give it another try because I think it would be nice for you guys who can't see and hear me.
Meanwhile, I have some prayers to ask you to join me in.
First is wonderful news from my cousin, Richelle, and her husband, Johnny; they are expecting a baby toward the end of the summer! I pray for a healthy kid and two sane parents on the other side and am so happy for them. :D
Next is my pal, Dave. He'll be going in for a biopsy/exploratory surgery on his spine where the edema and fractured vertebrae is. That's Thursday or Friday this week and I'm hopeful that at least the swelling can be abated and give Dave some relief. He and his wife, Shaye, also need to know exactly what's up so I'm praying for definitive results of the biopsy.
My chemo buddy, Greg, is off the drip this week but having more difficulties with his neuropathy causing pain and locking up joints now and then. He really deserves a break and if the supplements can't do it, God most definitely can. Please pray with me that he gets some specific help in those areas and can withstand the remaining chemo rounds we've both got coming up.
Me? Well The Bubblies are still there and this week's chemo seemed to wake them up earlier than normal; that's usually Thursday when the 5FU is done and my poison tank is full. Finding other things to concentrate one helps as does a little snack to keep The Bubblies occupied. Thus, the getting back to work campaign will help but a little more effectiveness from my pills or a little Providence would not be unwelcome. My car has an airbag fault that had been compounded by what appeared to be the steering convenience control module also dying. She goes to the dealer on Monday despite the steering controls coming back on Monday. :kookoo: I go in next Wednesday for a flouroscopy x-ray that Dr. Grasso will appraise to see how his work has healed. If he gives me the okay, we can schedule the ileomostomy reversal! And oh yeah, my hair is falling out. I'm getting this little sideways strip across the top with a little patch up front and a Shaolin kung-fu monk style in the back. I'm not happy and it's just the latest demoralizing loss in this whole deal. I don't know what to do about it.
And ya know, I really wish Blogger included little smiley graemlins like the various web forums do.
Yes, I bought a new Dell Inspiron 1525. It was a top 5/10 pick in several recent pc editorial reviews and I know the Dell outlet site often has super bargains on refurbs and new orders not delivered; I paid $150 less than the current Dell $300 off code that's on the retail site now. That's nearly half off! Bada bing! This one was a refurb, but it does carry a years warranty and I have strong doubts I'll need it. 1.8GHz dual core, 1Gb memory, 160Gb storage, a/b/g/n wireless, Bluetooth, DVDR+/-, firewire, 15.4" widescreen, Windows Vista Home Premium edition, and some tres cool extras... twin headphone jacks for Jody and I to both enjoy a movie when traveling, a media access that starts a micro operating system to get onto the disk without starting Windows, and a 2 megapixel webcam hidden in the screen frame barely the diameter of a cheap ballpoint pen shaft. So yeah, that brought a smile to my face. :D
I got it out of the box and started setting it up for our network. First came permission to use the network then came the ubiquitous updates (only 9 since this box was built), then anti-virus (ask me privately if you really want to know my choice), and Firefox because IE 7 is a spitefully ugly tool. VAG-COM came next because it was the reason for buying a new laptop. The old one had served me well but the battery would not hold a charge making the VAG-COM cable useless when I needed to scan for trouble in the GTI last week (airbag fault!). The old one was a buy from back before Jody and I were even engaged so it was time for a new one.
In the midst of setting up the new machine I got a phonecall from Cigna... specifically my work incentive program officer. We'd not spoken yet, directly, though she was aware from comments on my case that I am seeking to get back to work. We discussed the resistance I'd encountered policy-wise from both Cigna and Lockheed. When I explained I was getting ready to campaign both my company and customer management chains to get their okay for my proposed schedule (one week on, one week mostly off) she agreed that would be workable. :o
See? There just isn't a way that :o conveys my total shock at hearing that news. Help me out, Schultzie...
So we chatted a little more for a whopping 20 minutes and by the end, I had just a slight change to make to my lobbying plan to get back to work. I can go back -today- if I want to. All I need to do is send in any statements for pay I earn and they can be evaluated retroactively.
HOT DIGGETY DOG!!!
That was possibly the best twenty minutes of the the last two months of my life.
So yeah, that brought a smile to my face too. I carved out a new area for cancer stuff on the new laptop and started with my lobby outline. I will solicit letters of recommendation from all of my doctors and management peeps and forward any that I receive on to both Lockheed and Cigna. Cigna will also get their own copy of Dr. Lee's initial part time release/limitations on me working at all. That will keep me smiling today while the 5FU drips away.
I had to blog about it but hey, why not try out the little webcam in the process? It worked well producing a four minute video (I outlined what I wanted to share like a little script) that chewed up 1.8G of storage. D'oh. Waaaaay too big for Blogger to swallow. I tried watering down the video capture settings but only got down to 350Mb which was still too big. I will give it another try because I think it would be nice for you guys who can't see and hear me.
Meanwhile, I have some prayers to ask you to join me in.
First is wonderful news from my cousin, Richelle, and her husband, Johnny; they are expecting a baby toward the end of the summer! I pray for a healthy kid and two sane parents on the other side and am so happy for them. :D
Next is my pal, Dave. He'll be going in for a biopsy/exploratory surgery on his spine where the edema and fractured vertebrae is. That's Thursday or Friday this week and I'm hopeful that at least the swelling can be abated and give Dave some relief. He and his wife, Shaye, also need to know exactly what's up so I'm praying for definitive results of the biopsy.
My chemo buddy, Greg, is off the drip this week but having more difficulties with his neuropathy causing pain and locking up joints now and then. He really deserves a break and if the supplements can't do it, God most definitely can. Please pray with me that he gets some specific help in those areas and can withstand the remaining chemo rounds we've both got coming up.
Me? Well The Bubblies are still there and this week's chemo seemed to wake them up earlier than normal; that's usually Thursday when the 5FU is done and my poison tank is full. Finding other things to concentrate one helps as does a little snack to keep The Bubblies occupied. Thus, the getting back to work campaign will help but a little more effectiveness from my pills or a little Providence would not be unwelcome. My car has an airbag fault that had been compounded by what appeared to be the steering convenience control module also dying. She goes to the dealer on Monday despite the steering controls coming back on Monday. :kookoo: I go in next Wednesday for a flouroscopy x-ray that Dr. Grasso will appraise to see how his work has healed. If he gives me the okay, we can schedule the ileomostomy reversal! And oh yeah, my hair is falling out. I'm getting this little sideways strip across the top with a little patch up front and a Shaolin kung-fu monk style in the back. I'm not happy and it's just the latest demoralizing loss in this whole deal. I don't know what to do about it.
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