Sir Isaac Newton's Third Law of Motion states, "For every action there is an equal and opposite reaction."
I've been reacting quite a bit these last sixteen days. I had to stop and think about that before I typed it. It feels like a year has passed. Yesterday, it dawned on me just how heavily this has been sitting on me. I've absorbed two pretty major hits and I'm still standing. I credit my faith and gift of calm in a crisis, but it's definitely wearing on me. For all the reacting, I need to make sure I keep acting equally and opposite.
It will sound cliche, but I need to get off my arse and out of the house while I can. I am sure it will boost my energy and my strength and is most likely the reason all these doctors keep encouraging me to get a little exercise beforehand. I just need to do it smart and not push myself too hard. It wasn't much more than a year ago that, even with a bum knee, I hiked the gorge beneath Ben Nevis to the glen of Steall Falls. -THAT- was a rough go so I have an idea what my limits are.
Today I learned the liver biopsy last Friday came back negative. This was short-lived though as Dr. Lee outlined to me Dr. Morton had essentially reported he was not able to find any lesions to sample last week. They just weren't showing up on the CT machine I was test piloting. Sooooo, Dr. Lee would like me to get another biopsy; this one from my lung. :(
I don't know exactly when that will happen only that I've asked for it to be the week of the 14th. I'll have to get twilighted for this as well as the porta-cath, but at least this time around I can -use- the porta-cath; that goes in next Thursday. It just didn't sound smart getting anesthetized twice the same week so I asked to push it back. Dr. Lee agreed. But, she wants to be absolutely certain we're dealing with metastatic disease so it's a biopsy. Another 'no' from my lung could mean an adjustment in my chemo and possibly a lot less worry. And duh, it could be a 'yes' too, but you guys didn't see the sizes of the little yellow blobs on the PET scan films. (The lung blob was a pixel or two, but the liver blobs were pretty big. Go figure.)
I'll be on chemo and a few days into radiation by the time of biopsy number two. Or three I guess thinking back all those long days ago.
Can I just say how ready I am for this to be over? I really do not like the anticipation. This is like the worst needle you ever knew was coming. Yeah, I need to stay active if not try to raise my activity level to get ready for this but I just wish I knew how bad it was going to be. Kinda like sensing the plane has started to slow down and you just know we'll be landing soon. I just haven't been on this kind of flight before so it's a little more scary than normal.
But from the good news department, the chemo pills for me are actually on Kaiser's formulary. Not only will I not have to get IV chemo, but the $5000 pills (yes, five thousand dollars) are only costing me my $10 copay. Color me stunned.
Friday, August 31, 2007
Tuesday, August 28, 2007
no rest for the weary
A mild weekend and a "day off" on Monday meant nothing much new to write about. I now have a rough calendar of what the end of the year will look like and, today, met with my radiologist, Dr. Cheston, for the first time... of many.
Dr. Grasso and Dr. Lee had confab'd last week and agreed that I ought to get some chemo and radiation therapy to start off. Dr. Cheston agreed with them and spelled out that process for me today along with some expectations of the effects I may (will) feel.
Every day for about five weeks I will drop by the radiation oncology clinic adjacent to Howard County General and get nuked. They'll hit me in three directions and maybe a fourth, but they will be trying hard to avoid zapping my lymph nodes, prostate, rectum, bladder, small intenstine, and the wedding tackle. In fact, I have special instructions to keep the kit clear of the firing range. I will be careful to obey.
The effects will accumulate and most likely not be felt until a week or two in. I may see an improvement in my digestion as a result, but the compound fatigue is pretty much inevitable. I anticipate this. We will meet weekly for x-rays and a "how are you feeling" discussion and work to mitigate any side effects. It looks like I may be approved for chemo via pills instead of IV and I will take them at the same time I get lit.
At least once during the therapy period I will meet with Dr. Grasso and tell him how it's going. This is in addition to seeing him next Thursday for outpatient surgery to get the porta-cath that has been approved too.
When the five weeks are up, I will have five to six weeks of no therapy at all to both let the chemo and radiation finish their job and to build my strength back up before the big surgery; the tumor will be removed. That is roughly the first week or two of November. I will be in the hospital for a week and I'm making it known again I expect visitors to keep me company!
I asked Dr. Cheston if there might be other people a little further along than I am who would be willing to talk to me about how they're doing. In return, if there are others coming behind me with the same kind of diagnosis and want to talk to someone, I'd be happy to volunteer. My Dad has been leaning on me to meet some fellows from church but I just think this is the wrong time to be trying to make new friends; at least friends whom aren't where Jody and I are at now. If anything, I think it may be most helpful both for me and maybe for someone else to be relating on this most serious of issues. I think I can help better that way and I also think I may be helped better too. I just feel that may be a way I might be needed while this is going on.
Meanwhile, more and more love keeps showing up in the mailbox and I thank you all for it. Today, the DHL truck dropped off an odd box labeled 'live plants' and 'this end up' on the outside. In the box I found a bonsai wine grape vine from California. It is remarkably cool and I think it may even produce grapes! I did not know whom it had been sent by until I found a little card in the elaborate box from some of Jody's old cronies at SPS; one fo the first companies she worked for full-time after the series of independent gigs she was doing when we got married. I will try to find a way to send my thanks back to them and to everyone else this evening too. I need to get some stationery...
Please, keep praying for both of us. Twice now I've asked Jody feeling I may have not been taking this seriously enough or that my optimism has been naive. I know this is Doubt and Fear trying to weasel their way back in. Jody is also going to need hands to replace mine as I get even weaker this next month. If anyone is especially handy with bathroom grout and caulk we could really use some help getting our master shower back on line again!
PS - yes, Beth, I do sudoku! I am about a third finished with a book of games Jody got me... I like the difficult level!
Dr. Grasso and Dr. Lee had confab'd last week and agreed that I ought to get some chemo and radiation therapy to start off. Dr. Cheston agreed with them and spelled out that process for me today along with some expectations of the effects I may (will) feel.
Every day for about five weeks I will drop by the radiation oncology clinic adjacent to Howard County General and get nuked. They'll hit me in three directions and maybe a fourth, but they will be trying hard to avoid zapping my lymph nodes, prostate, rectum, bladder, small intenstine, and the wedding tackle. In fact, I have special instructions to keep the kit clear of the firing range. I will be careful to obey.
The effects will accumulate and most likely not be felt until a week or two in. I may see an improvement in my digestion as a result, but the compound fatigue is pretty much inevitable. I anticipate this. We will meet weekly for x-rays and a "how are you feeling" discussion and work to mitigate any side effects. It looks like I may be approved for chemo via pills instead of IV and I will take them at the same time I get lit.
At least once during the therapy period I will meet with Dr. Grasso and tell him how it's going. This is in addition to seeing him next Thursday for outpatient surgery to get the porta-cath that has been approved too.
When the five weeks are up, I will have five to six weeks of no therapy at all to both let the chemo and radiation finish their job and to build my strength back up before the big surgery; the tumor will be removed. That is roughly the first week or two of November. I will be in the hospital for a week and I'm making it known again I expect visitors to keep me company!
I asked Dr. Cheston if there might be other people a little further along than I am who would be willing to talk to me about how they're doing. In return, if there are others coming behind me with the same kind of diagnosis and want to talk to someone, I'd be happy to volunteer. My Dad has been leaning on me to meet some fellows from church but I just think this is the wrong time to be trying to make new friends; at least friends whom aren't where Jody and I are at now. If anything, I think it may be most helpful both for me and maybe for someone else to be relating on this most serious of issues. I think I can help better that way and I also think I may be helped better too. I just feel that may be a way I might be needed while this is going on.
Meanwhile, more and more love keeps showing up in the mailbox and I thank you all for it. Today, the DHL truck dropped off an odd box labeled 'live plants' and 'this end up' on the outside. In the box I found a bonsai wine grape vine from California. It is remarkably cool and I think it may even produce grapes! I did not know whom it had been sent by until I found a little card in the elaborate box from some of Jody's old cronies at SPS; one fo the first companies she worked for full-time after the series of independent gigs she was doing when we got married. I will try to find a way to send my thanks back to them and to everyone else this evening too. I need to get some stationery...
Please, keep praying for both of us. Twice now I've asked Jody feeling I may have not been taking this seriously enough or that my optimism has been naive. I know this is Doubt and Fear trying to weasel their way back in. Jody is also going to need hands to replace mine as I get even weaker this next month. If anyone is especially handy with bathroom grout and caulk we could really use some help getting our master shower back on line again!
PS - yes, Beth, I do sudoku! I am about a third finished with a book of games Jody got me... I like the difficult level!
Saturday, August 25, 2007
I'm not making this up
I thought it might be nice if you guys reading along could actually see I'm not withering away or just putting on a happy face. This is me on Thursday at home briefly before the second visit with the surgeon. Alex had made me a great box of goodies to cheer me up. And it worked. :D
Sarah sent Portuguese breads and homemade peach jam that were awesome. There is not much left...
dreams do come true
I was taking a morning nap today which is unusual for me but may be the product of an unusual week. I woke up suddenly from a dream where someone hit me in the back of the head with a pan. I was startled and would have sworn I felt actual pain.
Jody crept in a moment later hoping not to wake me. I told her what had happened and she said, "I can make that dream come true."
Who knew?
Jody crept in a moment later hoping not to wake me. I told her what had happened and she said, "I can make that dream come true."
Who knew?
with onions and gravy
I've never been a fan. Onions and gravy are fine, but liver is not my dish. Well maybe liverwurst or braunschweiger on some crackers. I wasn't even really sure what function my liver ever did for me other than it was in there and was doing its job. But since it is probably sick, I had to have a biopsy sample taken and tested yesterday. One last scare for the week.
As it turned out, I was frightened for no real good reason. Sure it sounded scary enough having to be needled with a large surgical straw and little bits of the sick parts of my liver taken away. It gives me chills just writing that out, but the truth is it was a breeze.
Jody and I checked in at the hospital on time yesterday morning and I just kept silently praying it would go quickly no matter how much it hurt. We eventually went back and I got robed in the hospital's finest scrubs and filled out more paperwork. Not so much this time though as more data about me is flying around now than ever before. I knew I'd get another IV so I volunteered my hands again; they had been cooperating much better than my arms.
Not so this day. We missed on the right side and I knew it immediately. The little bubble of saline hurt a lot and did not help calm my nerves about the procedure coming up. I repeated my request for a sedative before things got under way... or maybe a sharp blow to the head to knock me out. I was ready to leave now, thank you. Instead, a little bity sonogram machine was used to expertly locate and lance a gooood vein in my left arm. I'd never taken a shot or IV that easily before. This equipment should be mandatory. ;)
Now that I was juiced, it was time to roll me back for the procedure. We talked about Vegas and hiking in the desert and I was happy to have my mind occupied with other things. I'd soon be sliding through the CT machine again while the doctor and the technicians pinpointed a spot to take the biopsy sample.
I already had the IV. To complete the set I got some monitoring pads stuck on me, a blood oxygen cap for one of my fingers, an oxygen supply stuck in my nose, and a blood pressure cuff on my right arm. Arms over my head so my middle could be seen and that lovely hospital robe pulled up around my neck. Ah, but not before I slipped my sleeping mask over my eyes. I did not want to even see the straw. So there I am, laid out on the table, dressed to thrill, and ready to be threaded into the CT machine. David Bowie's Space Oddity comes to mind as I feel like some sort of low-rent Major Tom about to be blasted off.
If the papers call, I like Polo shirts though I really would like to say how much I miss the tough old Warthog shirts from Britches.
If you don't know the song that's just my way of saying the procedure was a success. They scanned, scanned again, marked my skin with an ink pen on my right side, then scanned me a third time. I knew it was time when one of the ladies attending told me she was giving me the sedative I asked for. The doctor obliged me and talked his way through the procedure starting with a sting and a little burn to numb the area... and that was all I felt. He did two or three more but I couldn't feel them after the first. There was a little pressure that was just slightly uncomfortable; not even as much as if Jody poked me with her elbow as sometimes happens when we sit close together or snuggle in bed.
Click. Click click. Okay just a minute. I need to adjust the needle a little. Click once more. And we're done.
Back to Jody I go for a few hours of observation and we pass the time watching Ice Road Truckers, How Its Made, and Mythbusters on the Discovery Channel. Jody had ordered me a biiiig lunch from the hospital cafeteria and every bite was delicious. We'd gotten started a about an hour and a half late due to other things going on with other folks so we weren't released from the hospital until that much later. We dropped by the oncologist' office and dropped of the PET scan films she had requested. The hospital had needed to see them first before the liver biopsy so we carried them out when we were released. I was relieved.
Back at home, I had a few hours of discomfort as the area around the biopsy site started tightening up as if I'd pulled a muscle. Two Tylenol later and getting to bed a little early resolved that. I feel fine today.
I get three days off and will actually get to put in a full day's work on Monday for a change! I have some small issues to call Denise with on Monday regarding Tuesday's radiation therapy consultation and to ask about a yea or nay on a porta-cath for all the IV and bloodwork I'll be taking/giving over the next five or six months. I also need to get myself educated on my disability benefits and prepare to start that process.
So I have some homework to keep me busy but right now I'd really like to go to the grocery and pick up some braunschweiger and a box of Triscuits.
As it turned out, I was frightened for no real good reason. Sure it sounded scary enough having to be needled with a large surgical straw and little bits of the sick parts of my liver taken away. It gives me chills just writing that out, but the truth is it was a breeze.
Jody and I checked in at the hospital on time yesterday morning and I just kept silently praying it would go quickly no matter how much it hurt. We eventually went back and I got robed in the hospital's finest scrubs and filled out more paperwork. Not so much this time though as more data about me is flying around now than ever before. I knew I'd get another IV so I volunteered my hands again; they had been cooperating much better than my arms.
Not so this day. We missed on the right side and I knew it immediately. The little bubble of saline hurt a lot and did not help calm my nerves about the procedure coming up. I repeated my request for a sedative before things got under way... or maybe a sharp blow to the head to knock me out. I was ready to leave now, thank you. Instead, a little bity sonogram machine was used to expertly locate and lance a gooood vein in my left arm. I'd never taken a shot or IV that easily before. This equipment should be mandatory. ;)
Now that I was juiced, it was time to roll me back for the procedure. We talked about Vegas and hiking in the desert and I was happy to have my mind occupied with other things. I'd soon be sliding through the CT machine again while the doctor and the technicians pinpointed a spot to take the biopsy sample.
I already had the IV. To complete the set I got some monitoring pads stuck on me, a blood oxygen cap for one of my fingers, an oxygen supply stuck in my nose, and a blood pressure cuff on my right arm. Arms over my head so my middle could be seen and that lovely hospital robe pulled up around my neck. Ah, but not before I slipped my sleeping mask over my eyes. I did not want to even see the straw. So there I am, laid out on the table, dressed to thrill, and ready to be threaded into the CT machine. David Bowie's Space Oddity comes to mind as I feel like some sort of low-rent Major Tom about to be blasted off.
If the papers call, I like Polo shirts though I really would like to say how much I miss the tough old Warthog shirts from Britches.
If you don't know the song that's just my way of saying the procedure was a success. They scanned, scanned again, marked my skin with an ink pen on my right side, then scanned me a third time. I knew it was time when one of the ladies attending told me she was giving me the sedative I asked for. The doctor obliged me and talked his way through the procedure starting with a sting and a little burn to numb the area... and that was all I felt. He did two or three more but I couldn't feel them after the first. There was a little pressure that was just slightly uncomfortable; not even as much as if Jody poked me with her elbow as sometimes happens when we sit close together or snuggle in bed.
Click. Click click. Okay just a minute. I need to adjust the needle a little. Click once more. And we're done.
Back to Jody I go for a few hours of observation and we pass the time watching Ice Road Truckers, How Its Made, and Mythbusters on the Discovery Channel. Jody had ordered me a biiiig lunch from the hospital cafeteria and every bite was delicious. We'd gotten started a about an hour and a half late due to other things going on with other folks so we weren't released from the hospital until that much later. We dropped by the oncologist' office and dropped of the PET scan films she had requested. The hospital had needed to see them first before the liver biopsy so we carried them out when we were released. I was relieved.
Back at home, I had a few hours of discomfort as the area around the biopsy site started tightening up as if I'd pulled a muscle. Two Tylenol later and getting to bed a little early resolved that. I feel fine today.
I get three days off and will actually get to put in a full day's work on Monday for a change! I have some small issues to call Denise with on Monday regarding Tuesday's radiation therapy consultation and to ask about a yea or nay on a porta-cath for all the IV and bloodwork I'll be taking/giving over the next five or six months. I also need to get myself educated on my disability benefits and prepare to start that process.
So I have some homework to keep me busy but right now I'd really like to go to the grocery and pick up some braunschweiger and a box of Triscuits.
Thursday, August 23, 2007
please keep your arms and legs inside the ride at alll times
Today the rollercoaster slowed a bit and began to chug into the station.
After two good days of better information and death to bureaucracy, Jody and I had a very fruitful meeting with Dr. Grasso today and laid out a rough calendar of events with the goal of destroying the cancer in me. As Jody and I left today we had a very different prayer time in the truck and expressed thanks for all the great things that have come together as the ride finally winds down.
People keep asking, worried, if I'm being given any "chances" or "odds" of success. No one I've spoken with yet has used these expressions. They all speak about removing the tumor and eliminating the metastatic disease, for good. That's my kind of confidence.
The calendar shapes up like this...
In the next week or so, I will start radiation treatment and tailored chemotherapy. If approved, I will get chemo pills made just for me, for my height and weight. If not, I will get tailored chemo by IV. This will be every day for approximately five weeks during which I can expect to feel tired, not terribly hungry, possibly nauseous, and a little more familiar with the locations of the restrooms wherever I go.
I will meet with Dr. Grasso a little past halfway through the therapy and again about a week after I complete it to keep him up to date with how I'm doing. At that second meeting we will schedule surgery for a good five or six weeks later. This time will let the effects of the radiation and chemo slow down a little and give my body a chance to ramp up for surgery. I'll be feeling better through this time though the anxiety of surgery will doubtlessly knot me up a little.
The surgery date will mark the start of a five to seven day stay at the hospital which will probably be GBMC and a bit of a burden on Jody. I am almost certain this will be the first time we're going to need someone outside the house to help us with taking care of Bailey and Hurley back home. I know I will miss them and will probably lose my marbles couped up in a hospital bed. I expect visitors. Ahem. ;)
This should put me back home for a four or five week break from work close to the week before or the week of Thanksgiving this year. The timing is divinely ironic. :lol:
That may mean I do not go back to work until after the holidays, but that's what my disability benefits are for at work. Right now I have no idea if I will need further radiation or chemo after surgery but I'm not betting against it. If so, the locations and amounts will depend upon the effectiveness of the pre-surgery therapy and the thoroughness of the surgery procedure itself. My confidence remains high... after all, my surgeon is a car guy too. :yesssss:
So that's how the ride goes. The gutwrenching drop and the loop-de-loop are past and the rest of the hills got easier. I credit my aunt Beth for introducing me to the carefully constructed scare and for teaching me the secret is to scream and let it out to avoid getting sick. This has been me screaming and I'm ready to get off now. It's off to the Lazy River Rafts with a stop at the Tilt-a-Whirl later on this year but thanks for riding with me. All the prayers and messages and cards and Alex's awesome care package really carried me through. I still need you guys for the weeks and months ahead so though the blog may not be rocking and rolling, Jody and I will still be on this train.
After two good days of better information and death to bureaucracy, Jody and I had a very fruitful meeting with Dr. Grasso today and laid out a rough calendar of events with the goal of destroying the cancer in me. As Jody and I left today we had a very different prayer time in the truck and expressed thanks for all the great things that have come together as the ride finally winds down.
People keep asking, worried, if I'm being given any "chances" or "odds" of success. No one I've spoken with yet has used these expressions. They all speak about removing the tumor and eliminating the metastatic disease, for good. That's my kind of confidence.
The calendar shapes up like this...
In the next week or so, I will start radiation treatment and tailored chemotherapy. If approved, I will get chemo pills made just for me, for my height and weight. If not, I will get tailored chemo by IV. This will be every day for approximately five weeks during which I can expect to feel tired, not terribly hungry, possibly nauseous, and a little more familiar with the locations of the restrooms wherever I go.
I will meet with Dr. Grasso a little past halfway through the therapy and again about a week after I complete it to keep him up to date with how I'm doing. At that second meeting we will schedule surgery for a good five or six weeks later. This time will let the effects of the radiation and chemo slow down a little and give my body a chance to ramp up for surgery. I'll be feeling better through this time though the anxiety of surgery will doubtlessly knot me up a little.
The surgery date will mark the start of a five to seven day stay at the hospital which will probably be GBMC and a bit of a burden on Jody. I am almost certain this will be the first time we're going to need someone outside the house to help us with taking care of Bailey and Hurley back home. I know I will miss them and will probably lose my marbles couped up in a hospital bed. I expect visitors. Ahem. ;)
This should put me back home for a four or five week break from work close to the week before or the week of Thanksgiving this year. The timing is divinely ironic. :lol:
That may mean I do not go back to work until after the holidays, but that's what my disability benefits are for at work. Right now I have no idea if I will need further radiation or chemo after surgery but I'm not betting against it. If so, the locations and amounts will depend upon the effectiveness of the pre-surgery therapy and the thoroughness of the surgery procedure itself. My confidence remains high... after all, my surgeon is a car guy too. :yesssss:
So that's how the ride goes. The gutwrenching drop and the loop-de-loop are past and the rest of the hills got easier. I credit my aunt Beth for introducing me to the carefully constructed scare and for teaching me the secret is to scream and let it out to avoid getting sick. This has been me screaming and I'm ready to get off now. It's off to the Lazy River Rafts with a stop at the Tilt-a-Whirl later on this year but thanks for riding with me. All the prayers and messages and cards and Alex's awesome care package really carried me through. I still need you guys for the weeks and months ahead so though the blog may not be rocking and rolling, Jody and I will still be on this train.
the mustard post
So if you read the second post, you know that after I ketchup, I mustard. And if you're clever you'll realize we all mustard.
Stop me if the puns aren't funny any more.
So it's last Wednesday and Jody and I are walking out of the building to her truck in a daze. She hasn't got any leftover twilight drugs to dull her senses so what's important to me is getting some lunch. We pray over what we've just learned. I have enough awareness that I begin with my own admission that I believe nothing happens outside of God's will and, though I've just been handed a big problem, I'm okay with that because I know I wont' be tested beyond what I can take. Obviously I don't know why this has happened nor am I terribly happy about it, but I believe it's what I'm supposed to be doing.
That evening we make calls to our parents and it's not easy. Though I'm praying specifically to be freed from feeling sorry for myself, I break down thinking of some of the things I'm afraid I'm going to miss. Right away I'm sorry the new car isn't going to turn out the way I wanted. I've always dreamed of driving cross-country and camping out along the way to see cool places like Yellowstone and the Badlands and the north rim of the Grand Canyon like friends of mine did after college forever ago. I want to hike the West Highland Way in Scotland. I want to see the northern lights. I want to have kids with Jody and raise them. I fall asleep from exhaustion more than anything else, but I know I have work to do.
Thursday begins with calls to the specialists Dr. Shih had referred me to. The surgeon doesn't take Kaiser patients. (I begin cursing Kaiser and the anger at my old doctor continues... it was his group and everyone there constantly whining about Aetna that forced me to switch.) The oncologist does though and I make an appointment. The first surgeon's office gives Jody another name of a fellow at GBMC who does take Kaiser patients so I get an appointment with him. I am not going to see Dr. Shih at the followup without having obeyed his orders. I call my primary doctor's office and explain that I need referrals. They will have to come as fast as they come and I begin to spit whenever I have to say the name, Kaiser.
That evening I began emailing my friends and family in small batches. I thought I'd be able to keep them in good order, but the responses and replies quickly overwhelmed me. It was a good thing to see so many people who cared and the abundance was what led to this blog being started. :)
Friday already had a PET scan scheduled before the bad news came. I'd made sure the scan would cover my lower abdomen to help define the colon cancer I now knew was there. Bada bing. I get all hooked up with the IV and the radioactive sugar and I lay strapped to the scanning bench and begin to wonder if how my arms are strapped over my head is or isn't allowed by the Geneva Convention.
That afternoon I missed a message at work from my doctor whom had early results from the PET scan and wanted to talk. When I got the message on Monday, I figured it must not have been really bad because he would have tried my celphone or even the Vonage phone I listed for "home" on my papers. Again, little did I know.
Saturday passed with just a little shocker to Jody's friend Michelle as we ate lunch. Jody and I went to the movies to see The Bourne Supremacy. (very good, two thumbs up) That evening I wrote some more batch emails to friends and tried to wade through the family replies. Sunday I was realizing the difference between "feeling" bad and "knowing" there was something wrong inside me. I wasn't feeling any different than a few days before but what I knew threatened to bum me out.
Monday arrived and there was apprehension all day before meeting with Dr. Grasso at GBMC whom I was consulting with to have the tumor removed with surgery. He had a copy of the PET scan report and was the one who revealed to us that the tumor had metastasized and appeared to be spreading to my liver and my right lung. Jody was hit by a truck again. I didn't fare much better. I hadn't really ramped myself up for that possibility even though I knew the PET scan was being done originally just to make sure the shadowy spots in my lungs were or were not cancer.
Dr. Grasso examined me and we talked about the two courses of treatment. It would be either surgery first and therapy later or therapy, surgery, and more therapy. The possible complications of therapy first may mean the tumor swells and blocks what bowel function I have now. Not good. He was glad to hear I had been PET scanned but he wanted to see a CT scan with contrast and to share the films with the specialists in the Cancer Center for their experience and advice. He also wanted to discuss the two options with the oncologist I'd be seeing the next day. Jody and I left and I made the CT scan appointment.
I really really wish I were speaking in the distant past tense right now but this was only Monday of this week. :(
We both broke down when we got to the truck. We prayed again and I grabbed on for dear life to my belief that I'm supposed to be strong enough to face this. Jody got us home. I just stared and stared in disbelief but this is the test I've been given.
I had another appointment to get a referral for so I started the process. I'd had enough of Kaiser and I wanted answers. There -had- to be a faster way to get these referrals. If they cannot keep up with me, we were going to wind up in a lawsuit. I calmly rang the patient services line and explained that I was not happy. Referrals had arrived in my mailbox two days -after- the procedure I'd been referred to have. Who could I speak to to hear my complaint... and help me figure out how to speed this process up?
I was directed to a case manager in Annapolis and I dug in for that phone call. To my absolute delight I was rewarded with answers, explanations, and sympathy. No I had not reached the correct person, but she would be getting my information by morning and I would be very well taken care of.
I no longer cursed Kaiser. I was actually looking forward to their help.
In the morning I made contact with the right person. Denise assured me she was there as my advocate. She inundated me with contact numbers and challenged me to send anyone with anything I needed right to her and she would make it happen. I have not met Denise yet, but I will kiss her when I do. ;)
Denise immediately slashed through red tape that very afternoon. Tuesday was the day Jody and I would meet Dr. Lee; my oncologist. She shed more light on what I can expect from therapy. I will most likely have to go through radiation treatment and about 50% strength chemotherapy before surgery. That is expected to start shrinking the cancer to help make surgery go a little easier. I expect she has already spoken with Dr. Grasso about this approach thought I will find that out for sure later today.
Dr. Lee was also able to alleviate some of my fears about therapy afterwards. If approved, my chemotherapy will be tailored to me and delivered as a pill. If not, I will have to visit for intravenous chemotherapy on a daily basis for five or six weeks. Radiation treatment will also apply. However, I should not be missing a lot of work nor be terribly sick at home. I will still lose my hair, but it will be as Mother Nature intended instead of all at once as a consequence of cancer treatment. So, Steve, you get to keep the monopoly on the Mr. Clean look.
Tuesday was a really good day after being crushed so hard on Monday. :)
Yesterday was a light day with only the second CT scan for Dr. Grasso. I froze my tuchus off for two hours in the lobby at American Radiology only to spend a whopping ten minutes on the scan table again. (yeesh) I got films for the doctors (PET for Lee, CT for Grasso) and I dropped by Dr. Morog's office to drop off another script; a radiation treatment consultation next Tuesday. That may be the day my formal pre-surgery therapy starts but I will clarify that with Dr. Grasso today. While I was at Dr. Morog's office I shared Denise' contact information with them and got to chat with Dr. Morog for the first time since all this fecal matter struck the oscillating room-cooling apparatus.
Dr. Morog was sincerely sorry for what had transpired. He wants to stay informed and simply asked me to have all the specialists send him reports on what's happening to me. I apologized to him for missing his call on Friday but I was a little thankful that I got to wait until Monday to hear the really bad news. I really value his attention and I feel the nonsense with my insurance change was really for the better; even if his office took me on outside of normal acceptance. I am really grateful to have a doctor that cares about me finally.
Meanwhile, my track day friends have floored me. When I'd emailed them to break the news, I also asked for some help in getting the BMW at least back onto its own wheels so I could consider selling it. They're having none of that and they're getting organized to descend on the car and fix it for me. This all happened in a matter of an evening. By the time I got caught up on all the messages, I was in tears. Ed, Jeremy, and James have rallied to get the car rolling again and into Ed's shop for a weekend so that it can be made right. Jason said they would have the car ready for me so I could get well and be ready for it. I have been so blessed to have made friends with these guys. I thought I was already in good company just driving with them. :sniffle:
So, you see? I told you by the time I got to Monday and Tuesday things would be more positive. :D
Stop me if the puns aren't funny any more.
So it's last Wednesday and Jody and I are walking out of the building to her truck in a daze. She hasn't got any leftover twilight drugs to dull her senses so what's important to me is getting some lunch. We pray over what we've just learned. I have enough awareness that I begin with my own admission that I believe nothing happens outside of God's will and, though I've just been handed a big problem, I'm okay with that because I know I wont' be tested beyond what I can take. Obviously I don't know why this has happened nor am I terribly happy about it, but I believe it's what I'm supposed to be doing.
That evening we make calls to our parents and it's not easy. Though I'm praying specifically to be freed from feeling sorry for myself, I break down thinking of some of the things I'm afraid I'm going to miss. Right away I'm sorry the new car isn't going to turn out the way I wanted. I've always dreamed of driving cross-country and camping out along the way to see cool places like Yellowstone and the Badlands and the north rim of the Grand Canyon like friends of mine did after college forever ago. I want to hike the West Highland Way in Scotland. I want to see the northern lights. I want to have kids with Jody and raise them. I fall asleep from exhaustion more than anything else, but I know I have work to do.
Thursday begins with calls to the specialists Dr. Shih had referred me to. The surgeon doesn't take Kaiser patients. (I begin cursing Kaiser and the anger at my old doctor continues... it was his group and everyone there constantly whining about Aetna that forced me to switch.) The oncologist does though and I make an appointment. The first surgeon's office gives Jody another name of a fellow at GBMC who does take Kaiser patients so I get an appointment with him. I am not going to see Dr. Shih at the followup without having obeyed his orders. I call my primary doctor's office and explain that I need referrals. They will have to come as fast as they come and I begin to spit whenever I have to say the name, Kaiser.
That evening I began emailing my friends and family in small batches. I thought I'd be able to keep them in good order, but the responses and replies quickly overwhelmed me. It was a good thing to see so many people who cared and the abundance was what led to this blog being started. :)
Friday already had a PET scan scheduled before the bad news came. I'd made sure the scan would cover my lower abdomen to help define the colon cancer I now knew was there. Bada bing. I get all hooked up with the IV and the radioactive sugar and I lay strapped to the scanning bench and begin to wonder if how my arms are strapped over my head is or isn't allowed by the Geneva Convention.
That afternoon I missed a message at work from my doctor whom had early results from the PET scan and wanted to talk. When I got the message on Monday, I figured it must not have been really bad because he would have tried my celphone or even the Vonage phone I listed for "home" on my papers. Again, little did I know.
Saturday passed with just a little shocker to Jody's friend Michelle as we ate lunch. Jody and I went to the movies to see The Bourne Supremacy. (very good, two thumbs up) That evening I wrote some more batch emails to friends and tried to wade through the family replies. Sunday I was realizing the difference between "feeling" bad and "knowing" there was something wrong inside me. I wasn't feeling any different than a few days before but what I knew threatened to bum me out.
Monday arrived and there was apprehension all day before meeting with Dr. Grasso at GBMC whom I was consulting with to have the tumor removed with surgery. He had a copy of the PET scan report and was the one who revealed to us that the tumor had metastasized and appeared to be spreading to my liver and my right lung. Jody was hit by a truck again. I didn't fare much better. I hadn't really ramped myself up for that possibility even though I knew the PET scan was being done originally just to make sure the shadowy spots in my lungs were or were not cancer.
Dr. Grasso examined me and we talked about the two courses of treatment. It would be either surgery first and therapy later or therapy, surgery, and more therapy. The possible complications of therapy first may mean the tumor swells and blocks what bowel function I have now. Not good. He was glad to hear I had been PET scanned but he wanted to see a CT scan with contrast and to share the films with the specialists in the Cancer Center for their experience and advice. He also wanted to discuss the two options with the oncologist I'd be seeing the next day. Jody and I left and I made the CT scan appointment.
I really really wish I were speaking in the distant past tense right now but this was only Monday of this week. :(
We both broke down when we got to the truck. We prayed again and I grabbed on for dear life to my belief that I'm supposed to be strong enough to face this. Jody got us home. I just stared and stared in disbelief but this is the test I've been given.
I had another appointment to get a referral for so I started the process. I'd had enough of Kaiser and I wanted answers. There -had- to be a faster way to get these referrals. If they cannot keep up with me, we were going to wind up in a lawsuit. I calmly rang the patient services line and explained that I was not happy. Referrals had arrived in my mailbox two days -after- the procedure I'd been referred to have. Who could I speak to to hear my complaint... and help me figure out how to speed this process up?
I was directed to a case manager in Annapolis and I dug in for that phone call. To my absolute delight I was rewarded with answers, explanations, and sympathy. No I had not reached the correct person, but she would be getting my information by morning and I would be very well taken care of.
I no longer cursed Kaiser. I was actually looking forward to their help.
In the morning I made contact with the right person. Denise assured me she was there as my advocate. She inundated me with contact numbers and challenged me to send anyone with anything I needed right to her and she would make it happen. I have not met Denise yet, but I will kiss her when I do. ;)
Denise immediately slashed through red tape that very afternoon. Tuesday was the day Jody and I would meet Dr. Lee; my oncologist. She shed more light on what I can expect from therapy. I will most likely have to go through radiation treatment and about 50% strength chemotherapy before surgery. That is expected to start shrinking the cancer to help make surgery go a little easier. I expect she has already spoken with Dr. Grasso about this approach thought I will find that out for sure later today.
Dr. Lee was also able to alleviate some of my fears about therapy afterwards. If approved, my chemotherapy will be tailored to me and delivered as a pill. If not, I will have to visit for intravenous chemotherapy on a daily basis for five or six weeks. Radiation treatment will also apply. However, I should not be missing a lot of work nor be terribly sick at home. I will still lose my hair, but it will be as Mother Nature intended instead of all at once as a consequence of cancer treatment. So, Steve, you get to keep the monopoly on the Mr. Clean look.
Tuesday was a really good day after being crushed so hard on Monday. :)
Yesterday was a light day with only the second CT scan for Dr. Grasso. I froze my tuchus off for two hours in the lobby at American Radiology only to spend a whopping ten minutes on the scan table again. (yeesh) I got films for the doctors (PET for Lee, CT for Grasso) and I dropped by Dr. Morog's office to drop off another script; a radiation treatment consultation next Tuesday. That may be the day my formal pre-surgery therapy starts but I will clarify that with Dr. Grasso today. While I was at Dr. Morog's office I shared Denise' contact information with them and got to chat with Dr. Morog for the first time since all this fecal matter struck the oscillating room-cooling apparatus.
Dr. Morog was sincerely sorry for what had transpired. He wants to stay informed and simply asked me to have all the specialists send him reports on what's happening to me. I apologized to him for missing his call on Friday but I was a little thankful that I got to wait until Monday to hear the really bad news. I really value his attention and I feel the nonsense with my insurance change was really for the better; even if his office took me on outside of normal acceptance. I am really grateful to have a doctor that cares about me finally.
Meanwhile, my track day friends have floored me. When I'd emailed them to break the news, I also asked for some help in getting the BMW at least back onto its own wheels so I could consider selling it. They're having none of that and they're getting organized to descend on the car and fix it for me. This all happened in a matter of an evening. By the time I got caught up on all the messages, I was in tears. Ed, Jeremy, and James have rallied to get the car rolling again and into Ed's shop for a weekend so that it can be made right. Jason said they would have the car ready for me so I could get well and be ready for it. I have been so blessed to have made friends with these guys. I thought I was already in good company just driving with them. :sniffle:
So, you see? I told you by the time I got to Monday and Tuesday things would be more positive. :D
the ketchup post
Here is where I make a big long post for everyone to catch up. Get it? Catch up? Ketchup?
I know. Don't quit my day job.
Like I said, it has been just over seven days since I found out the bad news. It started with allergies and a bad cold at the end of June. When a week had passed and the cold had me coughing up yellow blobs of ick, I called my former doctor's office for an appointment. I was sure I needed an antibiotic and I was also sure someone there would try swaying me to buy some herbal/veggie/hippie concoction; it seems all the practitioners there own part of a health food store and soothe their ethical guilt by admitting it when they refer me there.
I emphasized former doctor because as I was making my appointment I acknowledged I had new insurance coverage. I'd moved from Aetna HMO to Kaiser Permanente HMO but whaddya know? They don't take Kaiser! What do they suggest I do? I was so frustrated and sick (of their crap) that I'd had enough. Jody's doctor gladly took me in at her request though I've since learned his office doesn't really take Kaiser either... a big obstacle I would find my way over only this past Monday.
Well, he wasn't available the first time I visited but his partner was and she checked me out. It sure looked like an infection so she sent me off with a 'script for an antibiotic, an expectorant, and to get some blood drawn for "the usual" tests. They all came back good though she commented I needed to exercise more and get some more fish into my diet. Only my bad cholesterol was a little high.
I finished those pills and wasn't really clearing up so I went back in. I met Dr. Morog as his patient for the first time and he gave me a different antibiotic and a different cough medicine as well as a 'script to go get x-rayed. By this point in time I'd been coughing so much I'd pulled the left side of my diaphragm and I couldn't breathe deeply. No yawning. No chuckling. It hurt really bad. Jody was beginning to see I'd really been sick enough to genuinely need to cancel our mini-vacation to Delaware for the Fourth two weeks before.
I finished those medicines in another week and a half and was closing in on a month of being sick. I'd bought an old BMW just the middle of June right before I got sick and my imagination ran wild. It is in great running order but needs the entire front suspension refreshed to pass inspection. I was hip deep in new parts and torn down car as I got more and more sick. I thought maybe the car had given me a bacteria, mold, or a virus; it hadn't smelled too great inside but what did I care? The plan has been to take out the interior and trim the car down to the bare minimum weight to have fun with at more track day events. (A gaggle of my track buddies are getting organized to fix the car for me in the wake of what's happening to me. I am truly lucky to have such amazing friends!)
While the checst congestion finally cleared, the cough wouldn't (and hasn't) go away. I was so tried of it that I okayed Dr. Morog to prescribe me liquid cough syrup with codeine; that gives me a headache when I take it. It worked a little, but the x-ray had shown some shadows Dr. Morog wasn't sure of. They could have been infection, scar tissue, foreign objects (like bits of Jason's melted Porsche catalytic converter!), or possibly cancer. I kinda laughed at that possibililty but I signed on with him asking me to get a CT scan. The scan was very fast but also inconclusive so he asked me to schedule a PET scan. This time I didn't laugh though I really didn't begin to get scared.
At Jody's insistence, I leveled with Dr. Morog that I'd been having some gastrointestinal trouble. For a long time. Since the holidays last year. I'd been embarrassed about it and just kinda living with it thinking my diet was crappy and that I finally needed to start exercising and eating better. I'd been doing the latter and noticing some weight loss as a result. I was just eating smaller portions of better things and passively avoiding bad starch (veggies instead of potatoes, multi-grains instead of white or plain wheat, fruit and yogurt, etc). It was making me feel good about myself.
Dr. Morog did not hesitate to send me to a gastrointerology specialist. By the end of the week I'd interviewed with Dr. Shih and told him what was up. I was having daily diarrhea punctuated by short bouts of more solid stools but still rather soft, greasy, and bloody. I'm sorry if that grosses anyone out but it's the truth and it really needed to be addressed a long time before I finally did. Dr. Shih wasted no time in recommending a colonoscopy procedure. He assured me if he found fissures or hemorrhoids or ulcers that he could fix them during the procedure. Anything unusual would be biopsied and he is an expert in his field. When he asked if I would like to participate in a research study comparing the "prep" medications, I signed up without hesitating. I'm all about science and testing. Besides, if I had to have a colonoscopy, I may as well make a hundred bucks answering some questions about getting ready for it. ;)
The prep was awful. Because I know I will most likely have to do it again, shortly, I will definitely ramp down my diet a day or two beforehand. For starters it tasted terrible. I've not actually had a glass of Liquid Draino, but the prep was about that consistency and tasted like lemon-scented floor cleaner. It gets you cleaned out though. The next day Jody and I met at home to drive together (twilight sedation meant I couldn't drive afterwards) and the colonoscopy was nothing. I didn't feel a thing nor have any knowledge it had happened.
That's when things began to get bad.
Laying in the recovery area, Jody came back and Dr. Shih checked in on me. He was kind but matter of fact the way someone whom has had to tell people bad news must have learned to speak from experience. He apologized but he had found colon cancer during the procedure. I was still a little loopy and I think I may have cracked a joke or something. Jody was hit by a truck. it was so very very surreal.
I got dressed and met Dr. Shih once again who gave me a copy of his report. At the bottom were strong recommendations to see a colo-rectal surgeon and an oncologist as soon as possible. We would follow up with one another in another five days. The shock was hitting me in slow motion and all I could think of was asking if I should watch what I eat after this procedure. Somewhere in me I felt I needed to stay calm so that Jody wouldn't worry.
I'm sorry but I really need to stop right now. Remembering this is good for me and hopefully is helping you, but I'm at one of those moments where I need to go have a good cry again. I haven't had enough of them and they are piling up a bit. It does get better! I promise! Just the last two days alone have been very very positive, but right now I need to finish this post and take a breather.
I know. Don't quit my day job.
Like I said, it has been just over seven days since I found out the bad news. It started with allergies and a bad cold at the end of June. When a week had passed and the cold had me coughing up yellow blobs of ick, I called my former doctor's office for an appointment. I was sure I needed an antibiotic and I was also sure someone there would try swaying me to buy some herbal/veggie/hippie concoction; it seems all the practitioners there own part of a health food store and soothe their ethical guilt by admitting it when they refer me there.
I emphasized former doctor because as I was making my appointment I acknowledged I had new insurance coverage. I'd moved from Aetna HMO to Kaiser Permanente HMO but whaddya know? They don't take Kaiser! What do they suggest I do? I was so frustrated and sick (of their crap) that I'd had enough. Jody's doctor gladly took me in at her request though I've since learned his office doesn't really take Kaiser either... a big obstacle I would find my way over only this past Monday.
Well, he wasn't available the first time I visited but his partner was and she checked me out. It sure looked like an infection so she sent me off with a 'script for an antibiotic, an expectorant, and to get some blood drawn for "the usual" tests. They all came back good though she commented I needed to exercise more and get some more fish into my diet. Only my bad cholesterol was a little high.
I finished those pills and wasn't really clearing up so I went back in. I met Dr. Morog as his patient for the first time and he gave me a different antibiotic and a different cough medicine as well as a 'script to go get x-rayed. By this point in time I'd been coughing so much I'd pulled the left side of my diaphragm and I couldn't breathe deeply. No yawning. No chuckling. It hurt really bad. Jody was beginning to see I'd really been sick enough to genuinely need to cancel our mini-vacation to Delaware for the Fourth two weeks before.
I finished those medicines in another week and a half and was closing in on a month of being sick. I'd bought an old BMW just the middle of June right before I got sick and my imagination ran wild. It is in great running order but needs the entire front suspension refreshed to pass inspection. I was hip deep in new parts and torn down car as I got more and more sick. I thought maybe the car had given me a bacteria, mold, or a virus; it hadn't smelled too great inside but what did I care? The plan has been to take out the interior and trim the car down to the bare minimum weight to have fun with at more track day events. (A gaggle of my track buddies are getting organized to fix the car for me in the wake of what's happening to me. I am truly lucky to have such amazing friends!)
While the checst congestion finally cleared, the cough wouldn't (and hasn't) go away. I was so tried of it that I okayed Dr. Morog to prescribe me liquid cough syrup with codeine; that gives me a headache when I take it. It worked a little, but the x-ray had shown some shadows Dr. Morog wasn't sure of. They could have been infection, scar tissue, foreign objects (like bits of Jason's melted Porsche catalytic converter!), or possibly cancer. I kinda laughed at that possibililty but I signed on with him asking me to get a CT scan. The scan was very fast but also inconclusive so he asked me to schedule a PET scan. This time I didn't laugh though I really didn't begin to get scared.
At Jody's insistence, I leveled with Dr. Morog that I'd been having some gastrointestinal trouble. For a long time. Since the holidays last year. I'd been embarrassed about it and just kinda living with it thinking my diet was crappy and that I finally needed to start exercising and eating better. I'd been doing the latter and noticing some weight loss as a result. I was just eating smaller portions of better things and passively avoiding bad starch (veggies instead of potatoes, multi-grains instead of white or plain wheat, fruit and yogurt, etc). It was making me feel good about myself.
Dr. Morog did not hesitate to send me to a gastrointerology specialist. By the end of the week I'd interviewed with Dr. Shih and told him what was up. I was having daily diarrhea punctuated by short bouts of more solid stools but still rather soft, greasy, and bloody. I'm sorry if that grosses anyone out but it's the truth and it really needed to be addressed a long time before I finally did. Dr. Shih wasted no time in recommending a colonoscopy procedure. He assured me if he found fissures or hemorrhoids or ulcers that he could fix them during the procedure. Anything unusual would be biopsied and he is an expert in his field. When he asked if I would like to participate in a research study comparing the "prep" medications, I signed up without hesitating. I'm all about science and testing. Besides, if I had to have a colonoscopy, I may as well make a hundred bucks answering some questions about getting ready for it. ;)
The prep was awful. Because I know I will most likely have to do it again, shortly, I will definitely ramp down my diet a day or two beforehand. For starters it tasted terrible. I've not actually had a glass of Liquid Draino, but the prep was about that consistency and tasted like lemon-scented floor cleaner. It gets you cleaned out though. The next day Jody and I met at home to drive together (twilight sedation meant I couldn't drive afterwards) and the colonoscopy was nothing. I didn't feel a thing nor have any knowledge it had happened.
That's when things began to get bad.
Laying in the recovery area, Jody came back and Dr. Shih checked in on me. He was kind but matter of fact the way someone whom has had to tell people bad news must have learned to speak from experience. He apologized but he had found colon cancer during the procedure. I was still a little loopy and I think I may have cracked a joke or something. Jody was hit by a truck. it was so very very surreal.
I got dressed and met Dr. Shih once again who gave me a copy of his report. At the bottom were strong recommendations to see a colo-rectal surgeon and an oncologist as soon as possible. We would follow up with one another in another five days. The shock was hitting me in slow motion and all I could think of was asking if I should watch what I eat after this procedure. Somewhere in me I felt I needed to stay calm so that Jody wouldn't worry.
I'm sorry but I really need to stop right now. Remembering this is good for me and hopefully is helping you, but I'm at one of those moments where I need to go have a good cry again. I haven't had enough of them and they are piling up a bit. It does get better! I promise! Just the last two days alone have been very very positive, but right now I need to finish this post and take a breather.
Wednesday, August 22, 2007
opening post...
So I thought I just had a bad cold. Maybe it was bronchitis or, gulp, pnemonia but I had never been so sick for so long. It started off innocently enough with a routine batch of summer allergies on a weekend visit to my in-laws. That was two and half months ago. It's now been seven surreal days since I learned (BUM Bum bummmm) I have cancer.
You're reading this because you're someone who cares about me and I've sent you a link. I'm writing it because I care about you and I need something easy, one place, to corral everything i want to share and keep all of you loving and generous people up to date. I'd always thought blogs were rather self-centered, but it has dawned on me this is just the right tool to speed what you've all asked me for right to you without half a dozen email lists and telephone tag skewing the story with every retelling.
So, welcome to the blog; my cancer blog. I will close this opening post and keep it brief. What I have in mind will be a bottom-up oldest to newest series of posts from me (and replies from you if you like!) to help chronicle the fight. And believe me, it is going to be fight. As any one of you who knows me well, if something isn't right around me it doesn't stay that way for long.
You're reading this because you're someone who cares about me and I've sent you a link. I'm writing it because I care about you and I need something easy, one place, to corral everything i want to share and keep all of you loving and generous people up to date. I'd always thought blogs were rather self-centered, but it has dawned on me this is just the right tool to speed what you've all asked me for right to you without half a dozen email lists and telephone tag skewing the story with every retelling.
So, welcome to the blog; my cancer blog. I will close this opening post and keep it brief. What I have in mind will be a bottom-up oldest to newest series of posts from me (and replies from you if you like!) to help chronicle the fight. And believe me, it is going to be fight. As any one of you who knows me well, if something isn't right around me it doesn't stay that way for long.
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