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.
Wednesday, April 2, 2008
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
Subscribe to:
Posts (Atom)
