Not too much to update other than I've been kind of tired this month. I blame it on what was to be the impending mis-interpreted, shamefully media-exploited, stupidly inaccurate dating (no leap year for the Mayan calendar... so 12/21/12 in Mayan days already passed us by), and just plain silly expectation that the world was going to end negative energy floating in the ether.
I'm trying to pick my gym visits back up and that has definitely helped. Fighting fatigue and working my way through a self-inflicted comedy of errors getting my paperwork sent to my disability provider for renewal has been the biggest story so far. Now I have the joy of wondering if there is going to be a snag being renewed and since the day I'm usually receive my check is during Christmas week, who knows if there will be any information etc. I guess I'll just have to wait to see if a check arrives.
Oh and I now am in possession of the 4th rejection for Gleevec. I'm not certain if my case manager is going to try to fight this, but I'm not holding my breath to get insurance approval. She seemed to really want to take this fight on, so we'll see. At least the rejection was friendlier in wording from Aetna/CVS than the nastygram from Blue Cross. A rejection letter with a heart... awwww (insert puppies here).
It looks like my next scan will be Feb. 25th, and I've been scheduled to meet with NP Roxanne rather than Dr Curti. Hopefully there won't be any new growth! I haven't seen her since my IL2 treatment so that should be nice.
Ki is doing well with residency, and has been given the highest praise from all of the departments where he's worked. I'm quite proud of what he's done, and am fiercely glad to have him as my partner. He took his last test for general medical licensing a week back, and it was great to see him for a few days. I'm looking forward to seeing him for Christmas too. He'll has the dubious honor of working on the 25th as he's the new guy in the Psych dept.
Hope everyone has a Merry Christmas and/or whichever all of the other holiday titles you celebrate. :)
Saturday, December 22, 2012
Tuesday, November 27, 2012
The CT that Makes ya Feel Dirty...
Okay so not so much, but I was surprised that I'd forgotten how much the CT scan infusion liquid makes you feel like you're slowly filling your pants as your body warms up during the intake of x-ray enhancing chemical goodness :)
If you haven't had the joy of a personal CT scan, basically they warn you about the sensation before administering the fluid. But of course then I'm thinking to myself... "I sure as heck hope I'm not having one of my Gleevec enhanced bowel reactions while preparing to slide into the gleaming white electro donut of medicinally focused internal sight!
Of course they're right, and you get to maintain dignity as you pull your pants back up while the awkwardly embarrassed technician looks away... cause apparently they never have to ask other patients to drop trousers? And I made sure all the goods were covered, and the underwear were clean too! hmph :)
Scan Results Say - no new growth to be seen, so it's a stable result with no reduction or change*
* According to Dr Curti, the radiologist read the scan results differently than he does, and in comparing the two scans, the radiologist felt there might be a slight growth in some mets. Dr Curti chalks this up to not seeing this and the previous scans from the same angle and, from his perspective, there was no growth. I'll run with his perspective. Something about their looking from a 130% angle and how he prefers a perpendicular (90%) view? Yeah it sorta made sense to me too :)
I'm now in the middle of the fun that comes with getting my life insurance disability renewed, and being dumb enough to think all of the paperwork they mailed to me all had to be dropped off with the cancer clinic. Apparently they needed me to fill out the exact same stuff I provided last June with regards to how my cancer impacts me, and what my income is. So I'll be getting another letter with that part to provide - I feel less than bright.
Of course... They already know my income since they're providing it. So what the hell? Anyway, whatever, I'm grateful to have their service, and it was me who didn't look over all of the paperwork so wah.
And I must thank my friend JaneAnne from my college days for a fun lunch hang between the un-self soiling CT scan, and my appointment with Dr Curti later in the afternoon.
Oh and for those keeping score on the Gleevec rejections, I have 3 so far - 2 from Blue Cross, and 1 from Aetna/CVS. Dr Curti and my case worker plan to file an appeal. This is likely from my indication that not having a balanced rejection file would mess up my perspective on properly administered cancer medication.
Actually, I would love to be a fly on the wall, if Dr Curti speaks to whatever "expert" they trump up to explain why a C Kit mutated Mucosal Melanoma patient isn't appropriately treated with Gleevec after responding to it for close to a full year... as he's like an Indiana Jones level expert vs. "top people" from a non-descript office.
If you haven't had the joy of a personal CT scan, basically they warn you about the sensation before administering the fluid. But of course then I'm thinking to myself... "I sure as heck hope I'm not having one of my Gleevec enhanced bowel reactions while preparing to slide into the gleaming white electro donut of medicinally focused internal sight!
Of course they're right, and you get to maintain dignity as you pull your pants back up while the awkwardly embarrassed technician looks away... cause apparently they never have to ask other patients to drop trousers? And I made sure all the goods were covered, and the underwear were clean too! hmph :)
Scan Results Say - no new growth to be seen, so it's a stable result with no reduction or change*
* According to Dr Curti, the radiologist read the scan results differently than he does, and in comparing the two scans, the radiologist felt there might be a slight growth in some mets. Dr Curti chalks this up to not seeing this and the previous scans from the same angle and, from his perspective, there was no growth. I'll run with his perspective. Something about their looking from a 130% angle and how he prefers a perpendicular (90%) view? Yeah it sorta made sense to me too :)
I'm now in the middle of the fun that comes with getting my life insurance disability renewed, and being dumb enough to think all of the paperwork they mailed to me all had to be dropped off with the cancer clinic. Apparently they needed me to fill out the exact same stuff I provided last June with regards to how my cancer impacts me, and what my income is. So I'll be getting another letter with that part to provide - I feel less than bright.
Of course... They already know my income since they're providing it. So what the hell? Anyway, whatever, I'm grateful to have their service, and it was me who didn't look over all of the paperwork so wah.
And I must thank my friend JaneAnne from my college days for a fun lunch hang between the un-self soiling CT scan, and my appointment with Dr Curti later in the afternoon.
Oh and for those keeping score on the Gleevec rejections, I have 3 so far - 2 from Blue Cross, and 1 from Aetna/CVS. Dr Curti and my case worker plan to file an appeal. This is likely from my indication that not having a balanced rejection file would mess up my perspective on properly administered cancer medication.
Actually, I would love to be a fly on the wall, if Dr Curti speaks to whatever "expert" they trump up to explain why a C Kit mutated Mucosal Melanoma patient isn't appropriately treated with Gleevec after responding to it for close to a full year... as he's like an Indiana Jones level expert vs. "top people" from a non-descript office.
Friday, November 16, 2012
I'm Not Going to be a Test Participant (for now)
After having a lovely chat with the researcher in charge of the new Melanoma test treatment, we mutually agreed that I was not an ideal candidate for this early testing run. The primary reason being:
- I would have to halt use of the Gleevec for 30 days prior to starting the test treatment. As this is a phase 1 test, they have to eliminate anything that would potentially muddy the results. It just doesn't make sense for me to stop a treatment that has kept my condition from worsening to try an unproven treatment.
There are other reasons as well, as they typically focus on candidates who don't have anything working at all for their treatment. So people who have tried the IL2, Yervoy etc. and haven't had real progress. The study has room for 6 people, and it wouldn't be right for me to take the place of someone who would immediately have a greater need.
Here are some basic details of the study for the class:
- Total participants will be 6 (2 groups of 3)
- The first group will be treated and observed over 2 months
- The second group will receive twice the dosage (amount somewhat depending on the effects seen with the first group)
- This is a combination of two immune system drugs:
- one which increases killer cell production (white cell cousins).
- Some cancers can turn these cells off, melanoma in particular
- another which inhibits the ability of the cancer cells to affect the killer cells, thus keeping them effective and functional for your immune system
So for the time being, I'll be staying with the Gleevec and still have my planned scan on the 26th.
On another Gleevec related note, my new case worker tried to get approval for the insurance to cover my medication and I now am the proud owner of a second rejection letter... As long as it's still something I can buy myself, I'm not upset about this.
Happy Thanksgiving Folks...
Wednesday, November 7, 2012
Scan for Turkey and Stuffing
Just a quick update - I just heard from the scheduling office at the clinic up in Portland. They thought it would make more sense for me to have my scan in the morning on the 26th, and then to have my meeting with Dr. Curti later that same day. The original plan was for me to get the scan on the Wed of the week prior and then drive back up for the Monday so I could enjoy the Thanksgiving holiday here with Ki and or friends. Ki will still be able to be down here so it doesn't really impact that schedule.
Also we're going to do a CT scan rather than the PET, which I would expect means Dr. Curti is looking for minute changes in the size of the cancer cells rather than metabolic activity.
Also, I've been experiencing some recurrent bleeding lately that reminds me a bit of last year prior to needing to have my original tumor area re-operated upon. The good news is it's not as significant in volume, nor in discomfort, so for the time being I think it should be okay to just go with the CT scan as Dr. Curti will be able to see if there is any new growth to a finer detail vs. the fuzzier PET scan.
So I'll be getting my turkey on and sleeping the dreams of the well fed a few days prior to heading up to check the body. The good news being the CT scan doesn't take as long as a PET, so I can potentially have some lunch in town, which would be nice.
more to come.
Also we're going to do a CT scan rather than the PET, which I would expect means Dr. Curti is looking for minute changes in the size of the cancer cells rather than metabolic activity.
Also, I've been experiencing some recurrent bleeding lately that reminds me a bit of last year prior to needing to have my original tumor area re-operated upon. The good news is it's not as significant in volume, nor in discomfort, so for the time being I think it should be okay to just go with the CT scan as Dr. Curti will be able to see if there is any new growth to a finer detail vs. the fuzzier PET scan.
So I'll be getting my turkey on and sleeping the dreams of the well fed a few days prior to heading up to check the body. The good news being the CT scan doesn't take as long as a PET, so I can potentially have some lunch in town, which would be nice.
more to come.
Friday, November 2, 2012
Fall and Back in So. Oregon
On the health front:
- I called the oncology clinic this week to see if the test treatment mentioned previously was happening, and that hasn't been finalized and scheduled yet, so I'll have to wait to see if they include me. My insurance case manager etc. informed me that my coverage includes FDA approved cancer medicine testing, so I made sure they were aware I had that benefit.
- As far as currently planned, I still will have my next PET scan in a few weeks, but we haven't had the date for the actual scan confirmed, since I guess the insurance takes some time to respond with confirmations of coverage etc. My meeting with Dr. Curti has been scheduled for the Monday after Thanksgiving however as his schedule does fill up quickly.
- Also my insurance company decided they hadn't received the request for my last PET scan prior to the actual scan, and therefore only paid for half cost. As these scans are a few thousand bucks a pop, they were expecting me to pick up half. Fortunately the clinic up in Portland never schedules without getting prior insurance authorization, and my case manager has the pre auth code the insurance sent before the scan. I guess this is what can happen when you have a third party company employed to handle billing (Aetna and Meritain)... In the meantime, my case manager is taking this task on herself, as she has the pre auth they claim to never have sent.
As for other bits:
The weather has definitely changed hard to Fall here in Oregon. I was in Arizona a couple of weeks back visiting my wonderful mother and sister (also wonderful :), and there is quite a contrast in temperature. This was a great trip where I took advantage of being able to drive down and make a couple of stops along the way (I used to drive a fair bit during my college days and my first few years here in Oregon, so road trips have a certain nostalgia for me).
First stop... Yosemite, which marks my first visit to the park, and of course I pick the day when it's cloud covered and drizzling. What can you do right? Still, what a beautiful place. I managed to take some pics, but with the weather being unsupportive, and me being still out of shape, I opted to just stick to the main valley. My route was in question though as I'd planned to drive by Mono Lake and the pass being over 9,000 ft had been closed the night prior due to snow.
Fortunately, I drove through the pass around 2 pm so the temperature was a balmy 37 degrees!
Frankly I'm tempted to say never go to Mono lake so it can stay a great secret for uber cool photos... But that would be most uncool, and since I'm gonna post a panorama shots of it I guess the only thing to say would be, there's not much else there? Except German tourists... They seem to really love the Western dessert states. Must be a John Wayne or Roy (and Ginger!) Rogers thing?
The final trip bit would be... taking the time to go down the "extraterrestrial highway" in Nevada (it runs alongside Area 51, is pretty much not so cool. I had hoped stopping at the sites along the way would be fun, but there was pretty much nothing more than a couple of touristy souvenir shops selling t-shirts and mugs. Plus the more famous of these was so loaded with bumper stickers about how much they hate President Clinton and how no one is going to take my gun etc rather than fun things about the area, that I kinda wasn't into the experience. Maybe I should have purchased some of the "Alien Jerky" that was advertised, but I figured it would likely be elk or deer meat rather than true Orion flesh, and you know once you go green...
I've dropped a few more pounds, but the traveling kinda put a kink in the exercise plans for that time. The goal is still to get the rest of the lbs gone, but I'm being realistic about my body's resources and realizing it will just take time.
Ki is doing well, and I just returned from seeing him, so it's been a real whirlwind of traveling, coming home for a week (and dressing up as a voodoo guy for a halloween party) and such. I'm glad to be home for a bit.
So here are a few shots from the trip - I'll have more to share on my flickr account after I get the old pics from Hawaii processed:
Monday, September 24, 2012
The Waiting Game, and Happy Birthday Mom!
Can I just say how damn pretty it is right now in Southern Oregon? That must be why I'm planning a trip to see my mom to belatedly celebrate her birthday :) And for those who insist on wearing pants right now... hmph!
In the meantime, I haven't heard back regarding my potential participation in the coming test treatment, but that doesn't mean anything one way or another yet. From what I recall, my initial option to do the test treatment combining IL2 and Radiation was a guessing game as to the timing (which is why I didn't do that test, and jumped right into IL2). We'll see what the decision is eventually, and in the meantime I have my next appt. for a scan scheduled to happen with Dr Curti at the end of November.
I've managed to drop a few pounds and a full pants size which is really a nice thing to see. Having cancer is one thing, but getting fat! The horror right? :) But I'm certainly not done yet, and while I may have slipped up a little last week... eep! I'm definitely not going to give up on the end goal of dropping the 50-60 lbs I put back on during the last year and a half.
Frankly I'm just relieved I've been able to keep it up - and since I wait out the morning's drug side effects, I've been "incident free" at the gym too :) I mean really could you imagine hitting the treadmill, and ummm well ... hitting the treadmill?
I've been selling off some guitar amps to fund a gear project which is turning out to be pretty fun, and I'm even thinking I might get a soldering iron so I can really ruin a preamp... lol I mean what prepares someone to modify a circuit path on a guitar preamp more than being a buyer for a mail order based musical gear retailer (well other than having a BA is Russian of course)?
Well here's to the coming months and such for good luck to all of us!
Later,
Doss
And here is a scan from my absolute FAVORITE trade show advertisement - this one was advertising accordions at Musik Messe!
In the meantime, I haven't heard back regarding my potential participation in the coming test treatment, but that doesn't mean anything one way or another yet. From what I recall, my initial option to do the test treatment combining IL2 and Radiation was a guessing game as to the timing (which is why I didn't do that test, and jumped right into IL2). We'll see what the decision is eventually, and in the meantime I have my next appt. for a scan scheduled to happen with Dr Curti at the end of November.
I've managed to drop a few pounds and a full pants size which is really a nice thing to see. Having cancer is one thing, but getting fat! The horror right? :) But I'm certainly not done yet, and while I may have slipped up a little last week... eep! I'm definitely not going to give up on the end goal of dropping the 50-60 lbs I put back on during the last year and a half.
Frankly I'm just relieved I've been able to keep it up - and since I wait out the morning's drug side effects, I've been "incident free" at the gym too :) I mean really could you imagine hitting the treadmill, and ummm well ... hitting the treadmill?
I've been selling off some guitar amps to fund a gear project which is turning out to be pretty fun, and I'm even thinking I might get a soldering iron so I can really ruin a preamp... lol I mean what prepares someone to modify a circuit path on a guitar preamp more than being a buyer for a mail order based musical gear retailer (well other than having a BA is Russian of course)?
Well here's to the coming months and such for good luck to all of us!
Later,
Doss
And here is a scan from my absolute FAVORITE trade show advertisement - this one was advertising accordions at Musik Messe!
Tuesday, August 28, 2012
Stable is as stable does...
And for those in the know... I still haven't watched Forest Gump.
Quick health update - the scan I had yesterday is effectively showing no change in the metabolic activity or size of my cancer spots. According to Dr Curti there may be some minniscule changes in both growth and reduction, but those are so small compared to the last PET scan from April, that it might as well be zero change (plus PET scans are slightly fuzzy, so officially it's the same).
At the office, we had a great and efficient meeting, and he mentioned a test study being planned for some time in October which will be working to incorporate T Cells, and White killer blood cells together in a new fashion that is expected to have a 40% success rate in overcoming Melanoma. Apparently my health and treatment history would qualify me to be a part of this, so I asked him to toss my name into the hat. Hopefully I'll be part of this group. He indicated the administration is very similar to Yervoy, and would be every two weeks, for the duration of the test.
The thing with Gleevec, is that as a cancer drug, it's designed for use directly with Leukemia, and for those with Melanoma, it does have a limited window of effectiveness. The window is different for each patient, and some have had years, and I've expected for it to work for me long enough to find something that would have a more lasting effect rather than just to keep me stable for an undetermined amount of time.
On an upbeat health note, I've managed to be fairly regular in going to the gym, and keeping to a decent diet plan (using the myfitnesspal app has really helped) and I've managed to drop 15 pounds in roughly a month. Hopefully I'll keep that action up and will reach my goal weight in a few months!
Quick health update - the scan I had yesterday is effectively showing no change in the metabolic activity or size of my cancer spots. According to Dr Curti there may be some minniscule changes in both growth and reduction, but those are so small compared to the last PET scan from April, that it might as well be zero change (plus PET scans are slightly fuzzy, so officially it's the same).
At the office, we had a great and efficient meeting, and he mentioned a test study being planned for some time in October which will be working to incorporate T Cells, and White killer blood cells together in a new fashion that is expected to have a 40% success rate in overcoming Melanoma. Apparently my health and treatment history would qualify me to be a part of this, so I asked him to toss my name into the hat. Hopefully I'll be part of this group. He indicated the administration is very similar to Yervoy, and would be every two weeks, for the duration of the test.
The thing with Gleevec, is that as a cancer drug, it's designed for use directly with Leukemia, and for those with Melanoma, it does have a limited window of effectiveness. The window is different for each patient, and some have had years, and I've expected for it to work for me long enough to find something that would have a more lasting effect rather than just to keep me stable for an undetermined amount of time.
On an upbeat health note, I've managed to be fairly regular in going to the gym, and keeping to a decent diet plan (using the myfitnesspal app has really helped) and I've managed to drop 15 pounds in roughly a month. Hopefully I'll keep that action up and will reach my goal weight in a few months!
Friday, August 10, 2012
PET Scan for Late August
Quick updates:
I have my next scans scheduled for late August (it took the new insurance a bit to a bit longer to approve, but it's the first procedure for them, so I'll reserve my opinion until the next time).
The new batch of pills contnue to deliver milder bathroom runs, which is welcome. Hopefully the scans show they're as effective as I need them to be.
My commitment to going to the gym finally kicked in 2 weeks ago. I'm sore, tired and really hopeful to drop this crazy amount of convalescence weight! As of yesterday I'm down 10lbs, but I expect this is simply due to starting from no exercise and diet to both happening together, and I don't think I'll see that kind of progress every 2 weeks. It will take some time, but I'm GOING to wear my old clothes again!
There is a sweet ragedy cat hanging out (with a collar) who only wants to be petted... he scoots off after sniffing the water I've tried to give him. I haven't seen him for a day, but he was crashing in my bushes. Hopefully he found his way home... But if he's still around I'll try giving him some tuna. (I know it's not a big deal, but it's odd for an obviously tame cat to look so ratty.)
Hopefully everyone is enjoying August, I wish I were in hiking form, but maybe by mid Sept I can get some stuff going.
I have my next scans scheduled for late August (it took the new insurance a bit to a bit longer to approve, but it's the first procedure for them, so I'll reserve my opinion until the next time).
The new batch of pills contnue to deliver milder bathroom runs, which is welcome. Hopefully the scans show they're as effective as I need them to be.
My commitment to going to the gym finally kicked in 2 weeks ago. I'm sore, tired and really hopeful to drop this crazy amount of convalescence weight! As of yesterday I'm down 10lbs, but I expect this is simply due to starting from no exercise and diet to both happening together, and I don't think I'll see that kind of progress every 2 weeks. It will take some time, but I'm GOING to wear my old clothes again!
There is a sweet ragedy cat hanging out (with a collar) who only wants to be petted... he scoots off after sniffing the water I've tried to give him. I haven't seen him for a day, but he was crashing in my bushes. Hopefully he found his way home... But if he's still around I'll try giving him some tuna. (I know it's not a big deal, but it's odd for an obviously tame cat to look so ratty.)
Hopefully everyone is enjoying August, I wish I were in hiking form, but maybe by mid Sept I can get some stuff going.
Wednesday, July 25, 2012
Why stuff gotta be breakin'?
Okay so good news first:
Reliance approved my disability! (For another arbitrary amount of time...) I'll have to get approval again starting Dec. 1st, and as this time is a 5 month window, that blows my idea that they work on a fiscal year starting July 1st. The last window of approval ran from Aug 1st - July 1st, which is 11 months? I dunno what the logic is, but whatever... I can keep the lights on! I was sweating this a bit, so it's a nice relief to know I'm still makin' the rent without putting on a dress (what? lol).
Also on a paperwork update - our insurance just switched over from Blue Cross, to Aetna. Apparently Aetna has a separate approval company they bought to help make access to certain treatments somewhat difficult... nice to hear that... but I would expect things like a PET scan and office visits etc. to be covered, so until it's an issue, I'll expect them to treat me right.
Lymon appears to be turning quite hard to the touch, which doesn't give me any particular information other than that it's... harder than it used to be?
My new version of the meds and the old version of the meds have super slight differences in how much they impact me. I discovered a leftover 10-pill-supply of the Goa-vec (the Gleevec generics manufactured in the lab from Goa, India) after I'd started taking the pills from the newer location (uncertain as to the actual age of this company and "newer" simply refers to my time frame with regards to our association :). So I decided it would be wise to finish the older pills off while they were still valid, and swapped them for the new pills over the 10 remaining old doses. It was quite interesting to notice they had a slight impact on me again, and I don't quite know what to make of that other than the active ingredient is 100% the same on paper, but perhaps the binders and such are slightly different? More potty runs and such for those of you interested in the opposite of a sail boat effect.
Once I started back on the new batch, they had a slightly different vibe and overall I think they're manufactured to a higher quality (differences are, they're slightly more compact, coated much better, don't dissolve in my mouth immediately if I pop a pill and don't have the water quite ready, and they're not remotely prone to splitting in half when pushed through their foil casing, something which occurred every 3rd or 4th pill with the Goa-vec). I have no idea if this had a bearing on my the Canadian Connection's decision to drop the old supplier, but I feel good about the new pills so far.
Ki just finished his ER time as a resident, and of course, they loved him :) He's now embarking on his first 2 months as a real decision making psychiatrist, and he's glad to be stepping into his chosen specialty for a bit.
I do have to share some sad news... I'm in the process of selling off some more of my gear, and my super cool little combo amp took a real beating in the mail across country. I've never had anything go wrong with an eBay transaction (thank goodness), so it was really sad/lame to get the message about this. Fortunately I had the UPS store pack and insure the shipment, as I didn't have a box off appropriate size for the amp on hand. So I don't expect to be out the dough, but it will take a little while to process I expect... at least the guy who bought it kept the packaging, and isn't being unpleasant.
And my monitor controller seems to be stuck in perma peak mode, and recalibrating it hasn't worked so far. I plan to try changing the input from a digital fibre spdif over to a tried and true analog connection and then recalibrating it... hopefully that will correct it, but I discovered it on the same day as the amp got all kablooey in the mail, so it was kind of a reinforced uncool momentary speck in the scheme of things that don't really matter. LOL - I mean yeah, whatever right? It still works, and that's what matters.
Okay so to sign off, I'll share a picture from a few years back from a place that I absolutely love. Hopefully I can plan and make a return trip sometime!
Reliance approved my disability! (For another arbitrary amount of time...) I'll have to get approval again starting Dec. 1st, and as this time is a 5 month window, that blows my idea that they work on a fiscal year starting July 1st. The last window of approval ran from Aug 1st - July 1st, which is 11 months? I dunno what the logic is, but whatever... I can keep the lights on! I was sweating this a bit, so it's a nice relief to know I'm still makin' the rent without putting on a dress (what? lol).
Also on a paperwork update - our insurance just switched over from Blue Cross, to Aetna. Apparently Aetna has a separate approval company they bought to help make access to certain treatments somewhat difficult... nice to hear that... but I would expect things like a PET scan and office visits etc. to be covered, so until it's an issue, I'll expect them to treat me right.
Lymon appears to be turning quite hard to the touch, which doesn't give me any particular information other than that it's... harder than it used to be?
My new version of the meds and the old version of the meds have super slight differences in how much they impact me. I discovered a leftover 10-pill-supply of the Goa-vec (the Gleevec generics manufactured in the lab from Goa, India) after I'd started taking the pills from the newer location (uncertain as to the actual age of this company and "newer" simply refers to my time frame with regards to our association :). So I decided it would be wise to finish the older pills off while they were still valid, and swapped them for the new pills over the 10 remaining old doses. It was quite interesting to notice they had a slight impact on me again, and I don't quite know what to make of that other than the active ingredient is 100% the same on paper, but perhaps the binders and such are slightly different? More potty runs and such for those of you interested in the opposite of a sail boat effect.
Once I started back on the new batch, they had a slightly different vibe and overall I think they're manufactured to a higher quality (differences are, they're slightly more compact, coated much better, don't dissolve in my mouth immediately if I pop a pill and don't have the water quite ready, and they're not remotely prone to splitting in half when pushed through their foil casing, something which occurred every 3rd or 4th pill with the Goa-vec). I have no idea if this had a bearing on my the Canadian Connection's decision to drop the old supplier, but I feel good about the new pills so far.
Ki just finished his ER time as a resident, and of course, they loved him :) He's now embarking on his first 2 months as a real decision making psychiatrist, and he's glad to be stepping into his chosen specialty for a bit.
I do have to share some sad news... I'm in the process of selling off some more of my gear, and my super cool little combo amp took a real beating in the mail across country. I've never had anything go wrong with an eBay transaction (thank goodness), so it was really sad/lame to get the message about this. Fortunately I had the UPS store pack and insure the shipment, as I didn't have a box off appropriate size for the amp on hand. So I don't expect to be out the dough, but it will take a little while to process I expect... at least the guy who bought it kept the packaging, and isn't being unpleasant.
And my monitor controller seems to be stuck in perma peak mode, and recalibrating it hasn't worked so far. I plan to try changing the input from a digital fibre spdif over to a tried and true analog connection and then recalibrating it... hopefully that will correct it, but I discovered it on the same day as the amp got all kablooey in the mail, so it was kind of a reinforced uncool momentary speck in the scheme of things that don't really matter. LOL - I mean yeah, whatever right? It still works, and that's what matters.
Okay so to sign off, I'll share a picture from a few years back from a place that I absolutely love. Hopefully I can plan and make a return trip sometime!
Wednesday, July 11, 2012
Happy 4th and 3rd!
So I'm writing from "The Pad" up in Albany (Ki's apt during residency) and have to share a little of my trepidation regarding the general status of two things:
- Hoping the PET scan planned for late Aug. shows reduced metabolic activity, or at least stable amounts in my cancer cells.
- Feeling slightly nervous as I wait to hear if my life insurance disability approves the continuation of pay for the coming year (their fiscal must run July to July).
On an awesome note, today marks the 3 yr anniversary since I met Ki. He's been so wonderful and I have to say I truly love him, and am very grateful to him for the support he's given me over the last year plus.
I'm feeling pretty well and managed a massive 30 mins in the gym last week (a whopping 15 mins of cardio and a treacherously long 15 mins of stretching) which resulted in my actually breaking a sweat... Since I told Dr Curti I plan to loose weight, I better deliver some progress by the end of Aug!
- Hoping the PET scan planned for late Aug. shows reduced metabolic activity, or at least stable amounts in my cancer cells.
- Feeling slightly nervous as I wait to hear if my life insurance disability approves the continuation of pay for the coming year (their fiscal must run July to July).
On an awesome note, today marks the 3 yr anniversary since I met Ki. He's been so wonderful and I have to say I truly love him, and am very grateful to him for the support he's given me over the last year plus.
I'm feeling pretty well and managed a massive 30 mins in the gym last week (a whopping 15 mins of cardio and a treacherously long 15 mins of stretching) which resulted in my actually breaking a sweat... Since I told Dr Curti I plan to loose weight, I better deliver some progress by the end of Aug!
Monday, June 18, 2012
June Scan Results in Fluffy Futures
Quick Update - the latest CT scan brought no changes to the party. Generally this is a good result, just not as amazingly good as the last scan.
I saw Dr Soutrain last Friday, and he confirmed the radiation had resulted in roughly a 60% reduction in Lymon. He felt this was a good result, and we would likely not need to revisit that area unless we see new growth.
My visit with Dr Curti went well this morning, and he and I discussed the more detailed analysis from the CT scan. With no appreciable growth or reduction showing he felt my current plan was where we should stay. I gather there were a few of the lung mets which showed as + or - 1mm in size which is due to the greater resolution of a dedicated CT scan as opposed to the version delivered with a PET (fluffy animals do tend to shed so in the warmer months, and Dr Curti appears to be quite fastidious with his grooming habits).
However the next scan will be of the fluffy variety, as we want to see if the metabolic activity has changed with the continuance of the faux Gleevec. With so much cell growth, it's inevitable to have some residual left overs which the body won't reabsorb. I'm hoping there will be reduction in the amount of life (metabolic activity) showing in the cancer mets.
On a fun buying-my-own-cancer-meds note... The lab in Goa is no longer where my pills are made, and while I don't have the new box handy to read to share where my newer pills were made, I can attest to the packaging being much fancier. Who knew there would be more than one pharmacy in India producing a generic for this drug? It'll be interesting to see if the pills keep coming from there in the future, (assuming I'll keep on the Gleevec plan).
Dr Curti and I chatted about what we might look to do if the pills stop working and there are a few new immune response treatments being developed as well as added combination therapies with radiation and immune boosters. There are also a few chemo options to try. With mucosal melanoma acting on different areas of the body than skin melanoma, there are some differences in what tends to be effective (it's also far more likely to be C Kit positive apparently).
Hopefully if I need to change, I'll qualify for one of the new options, but for now my plans are to start actively losing weight, practicing keys and guitars, trying to write, and going back and forth from Talent to Albany/Corvallis to see Ki (who is starting residency today!).
I saw Dr Soutrain last Friday, and he confirmed the radiation had resulted in roughly a 60% reduction in Lymon. He felt this was a good result, and we would likely not need to revisit that area unless we see new growth.
My visit with Dr Curti went well this morning, and he and I discussed the more detailed analysis from the CT scan. With no appreciable growth or reduction showing he felt my current plan was where we should stay. I gather there were a few of the lung mets which showed as + or - 1mm in size which is due to the greater resolution of a dedicated CT scan as opposed to the version delivered with a PET (fluffy animals do tend to shed so in the warmer months, and Dr Curti appears to be quite fastidious with his grooming habits).
However the next scan will be of the fluffy variety, as we want to see if the metabolic activity has changed with the continuance of the faux Gleevec. With so much cell growth, it's inevitable to have some residual left overs which the body won't reabsorb. I'm hoping there will be reduction in the amount of life (metabolic activity) showing in the cancer mets.
On a fun buying-my-own-cancer-meds note... The lab in Goa is no longer where my pills are made, and while I don't have the new box handy to read to share where my newer pills were made, I can attest to the packaging being much fancier. Who knew there would be more than one pharmacy in India producing a generic for this drug? It'll be interesting to see if the pills keep coming from there in the future, (assuming I'll keep on the Gleevec plan).
Dr Curti and I chatted about what we might look to do if the pills stop working and there are a few new immune response treatments being developed as well as added combination therapies with radiation and immune boosters. There are also a few chemo options to try. With mucosal melanoma acting on different areas of the body than skin melanoma, there are some differences in what tends to be effective (it's also far more likely to be C Kit positive apparently).
Hopefully if I need to change, I'll qualify for one of the new options, but for now my plans are to start actively losing weight, practicing keys and guitars, trying to write, and going back and forth from Talent to Albany/Corvallis to see Ki (who is starting residency today!).
Monday, June 4, 2012
Remembering Lah Jawlah in the WC
So the thing is, when you're a child (and sadly a teenager, young adult, pre middle aged adult etc) you don't always know what the hell people are referencing after hearing something multiple times. For me the earliest memory of this phenomenon was the name of a town in So. Cal (my father was stationed in Coronado for 5 years in the 70's). This mysterious town where my sister would go on occasion for sporting events was named:
"La Jolla"
And of course being a Spanish name roughly translated as "The Jaw Line of a Female Ox," it wasn't pronounced quite the way the name read to a young boy (that would be me at the time) who knew nothing of Spanish. So of course I heard the name of this place as:
"Lah Hoyuh"
Never once thinking it was the same as that funny sounding town I would see on road signs from time to time known to myself as:
"Lah Jawlah"
I suppose if I were being properly British about it (only with select words of course... or so it seems) I would just brashly proclaim that I wasn't a native Spanish speaker and push on ahead in my life continuing to say (and in my mind correctly so) "Lah Jawlah."
The reason I'm putting you intrepid readers through this scintillating explanation of how my mind revisits and updates a childhood memory through my pre middle aged adult brain's filter, is simply because my birthday is coming up in 2 days, and I thought this would be more interesting to write about vs. last year's birthday when I checked in for my second cycle of Interleukin 2 therapy. 'Happy Birthday Doss, now put this lovely gown on, and we'll commence to plug a myriad of tubes into you and do our best to keep you comfortable while you go into shock every 8 hours for as many times as you can take it' (I was a wuss ... maybe if I'd managed all the infusions I would have had the sail boat effect?).
Update bits:
Happily I'm still seeing reduction in Lymon, but he hasn't made a complete disappearance quite yet. He's a bit larger than a good sized almond to my touch, hopefully he'll continue to shrink by the coming CT scan.
I'll be getting my next scan on Friday, June 15th and visiting with the good Dr. Soultrain later that morning (and likely stopping by Ikea with Ki for some last minute grabs for his apartment in Albany (which is the town next to Corvallis where his residency will start on June 18th). On that Monday (the heretofore mentioned 18th), I'll meet with Dr Curti to go over the CT results.
And for those of you in the "know" I've had a total of 4 "incidents" since starting this mad journey last year in May. I thought I was done with that stuff, but radiation therapy after effects have included a need to keep a water closet within striking distance. I'm hardly the only person to experience this heightened degree of daily fun, so I'm not whining. Just sharing :) And fortunately I haven't had to book it out of the car again in the middle of a May shower to reach the woods in the mountains of I-5 just south of Canyonville this year (while trying to not pass out from my first week of IL2 therapy) what a memory - I'll cherish it forever!
And to close I'll include a photo of a lovely fountain in Lithia Park (here in Ashland - the park is truly one of the gems of the region). Ki seems to love this shot even though the angel baby is strangling the poor goose (of course if it's a goose, it deserves said treatment as species based sorta karma... and no I don't hold having to fend off geese with a briefcase on multiple occasions as they simply decided to chase after and snap at me against them... such lovely birds really).
"La Jolla"
And of course being a Spanish name roughly translated as "The Jaw Line of a Female Ox," it wasn't pronounced quite the way the name read to a young boy (that would be me at the time) who knew nothing of Spanish. So of course I heard the name of this place as:
"Lah Hoyuh"
Never once thinking it was the same as that funny sounding town I would see on road signs from time to time known to myself as:
"Lah Jawlah"
I suppose if I were being properly British about it (only with select words of course... or so it seems) I would just brashly proclaim that I wasn't a native Spanish speaker and push on ahead in my life continuing to say (and in my mind correctly so) "Lah Jawlah."
The reason I'm putting you intrepid readers through this scintillating explanation of how my mind revisits and updates a childhood memory through my pre middle aged adult brain's filter, is simply because my birthday is coming up in 2 days, and I thought this would be more interesting to write about vs. last year's birthday when I checked in for my second cycle of Interleukin 2 therapy. 'Happy Birthday Doss, now put this lovely gown on, and we'll commence to plug a myriad of tubes into you and do our best to keep you comfortable while you go into shock every 8 hours for as many times as you can take it' (I was a wuss ... maybe if I'd managed all the infusions I would have had the sail boat effect?).
Update bits:
Happily I'm still seeing reduction in Lymon, but he hasn't made a complete disappearance quite yet. He's a bit larger than a good sized almond to my touch, hopefully he'll continue to shrink by the coming CT scan.
I'll be getting my next scan on Friday, June 15th and visiting with the good Dr. Soultrain later that morning (and likely stopping by Ikea with Ki for some last minute grabs for his apartment in Albany (which is the town next to Corvallis where his residency will start on June 18th). On that Monday (the heretofore mentioned 18th), I'll meet with Dr Curti to go over the CT results.
And for those of you in the "know" I've had a total of 4 "incidents" since starting this mad journey last year in May. I thought I was done with that stuff, but radiation therapy after effects have included a need to keep a water closet within striking distance. I'm hardly the only person to experience this heightened degree of daily fun, so I'm not whining. Just sharing :) And fortunately I haven't had to book it out of the car again in the middle of a May shower to reach the woods in the mountains of I-5 just south of Canyonville this year (while trying to not pass out from my first week of IL2 therapy) what a memory - I'll cherish it forever!
And to close I'll include a photo of a lovely fountain in Lithia Park (here in Ashland - the park is truly one of the gems of the region). Ki seems to love this shot even though the angel baby is strangling the poor goose (of course if it's a goose, it deserves said treatment as species based sorta karma... and no I don't hold having to fend off geese with a briefcase on multiple occasions as they simply decided to chase after and snap at me against them... such lovely birds really).
Monday, May 21, 2012
Tired yet Seeing Progress
Quick update
1. I'm still a bit tired from the radiation treatments, but not too bad all in all.
2. Lymon has already shown some reduction...!
3. But I still get sore in the lymph node area, anxious for it to go away.
4. Ki graduated from medical school last Friday! The ceremony was nice.
5. We were briefly in Pasadena, and currently in AZ seeing my mom, and going back to Oregon tomorrow (btw its damn hot here in Phx).
1. I'm still a bit tired from the radiation treatments, but not too bad all in all.
2. Lymon has already shown some reduction...!
3. But I still get sore in the lymph node area, anxious for it to go away.
4. Ki graduated from medical school last Friday! The ceremony was nice.
5. We were briefly in Pasadena, and currently in AZ seeing my mom, and going back to Oregon tomorrow (btw its damn hot here in Phx).
Wednesday, May 9, 2012
Touchup Tanning Travails
Monday (two days past) was my second of two planned radiation treatments for Lymon. You know he's awfully pale, and with bikini season nigh upon us, I just felt he really needed some added color (all the other tumors have such fab tans these days you know)?
The procedure was relatively straightforward, with the exception of the clinic's computer system having completely shut down prior to our arrival. They were sending all the patients home for the afternoon, as the wait time for the computer reboot was longer than reasonable for the locals. They technicians were terribly nice with me, and indicated I should stay, as they would place me first in line since I'd travelled from Talent to Portland for my session. This included giving me some coupons for chow (amounting to $7.50 which covered a cook's odd attempt at a funky tandoori flavored bbq roast chicken in the cafeteria - not bad all in all).
There was a funny moment was while we finished the spot tanning treatment, when the technicians bemoaned the fact that I was only there for 2 treatments as they enjoyed working with me so much. I'll take the compliment, but hopefully I won't need additional sessions.
Ki met me at the hospital as he was visiting family up in Washington for a few days, and it was great to see my honey again. We met with a substitute doctor (Dr Soultrain doesn't work on Mondays), and she explained we should expect a 2 to 3 month wait for results to show. Sometimes tumors like mine can reduce more quickly (not sure if this is more of a melanoma tumor thing, or just the way it generally is), but as long as it works, I'll be fine with the time frame.
Afterwards was my first office visit with Dr Curti as my primary care/office visit oncologist. He has a rather different demeanor than Dr Lufkin. I would chalk that up to his being so focused on research for many years, but it looks to be interesting (in a good way) as he's a very nice guy. I get the impression he'd talk as long as I kept asking questions, but wouldn't necessarily go into much detail if I didn't ask. I got a kick out of his self-description as being "old school" as we'll be doing a regular CT scan next rather than another PET scan in June (either he doesn't like getting patient's hopes up for the continual non-delivery of a cute puppy, or he likes the added detail of the regular CT scan on occasion as it has a higher degree of resolution than the CT info a PET scan delivers). This will allow us to see below the 2mm size for mets, but no metabolic information, and as half of the lung mets were below the 2mm size on the last scan, he wants to see where they're at.
In the meantime, side effects such as moderate to severe nausea have started to pop up in the early evenings, which have been controlled once I remembered that I had Ativan pills in the cabinet. I'll expect one more week or so of the occasional bout as well as the sound of helicopter whup whup effects when I stupidly stand up too quickly (you'd think I would remember that one by now... but it's not constant so that's my excuse). And apparently the tumor is supposed to show some aggravated swelling and soreness as the radiated cells are being slapped around (I'm thinking of a 20's style gangster voice as I type that).
So things are going decently. Mid next week we'll be in So Cal for Ki's graduation, and then off to AZ for a few days to see my mom. I also need to figure out some finance thingies as I need to pay the advocator group, and work out the back pay for the life insurance company coverage for the social security portion of my pay (sounds complicated, but I'm not really in the mood to go into details).
Hope all are having a fab May - the weather is teasing warmth, rain, and such here in lovely So Oregon. And here is a shot from the Napoli coast off Kauai from the trip Ki and I took to celebrate his finishing med school! I'll likely have to spend an inordinate amount of time over the next couple of months processing shots, but it was a lot of fun.
The procedure was relatively straightforward, with the exception of the clinic's computer system having completely shut down prior to our arrival. They were sending all the patients home for the afternoon, as the wait time for the computer reboot was longer than reasonable for the locals. They technicians were terribly nice with me, and indicated I should stay, as they would place me first in line since I'd travelled from Talent to Portland for my session. This included giving me some coupons for chow (amounting to $7.50 which covered a cook's odd attempt at a funky tandoori flavored bbq roast chicken in the cafeteria - not bad all in all).
There was a funny moment was while we finished the spot tanning treatment, when the technicians bemoaned the fact that I was only there for 2 treatments as they enjoyed working with me so much. I'll take the compliment, but hopefully I won't need additional sessions.
Ki met me at the hospital as he was visiting family up in Washington for a few days, and it was great to see my honey again. We met with a substitute doctor (Dr Soultrain doesn't work on Mondays), and she explained we should expect a 2 to 3 month wait for results to show. Sometimes tumors like mine can reduce more quickly (not sure if this is more of a melanoma tumor thing, or just the way it generally is), but as long as it works, I'll be fine with the time frame.
Afterwards was my first office visit with Dr Curti as my primary care/office visit oncologist. He has a rather different demeanor than Dr Lufkin. I would chalk that up to his being so focused on research for many years, but it looks to be interesting (in a good way) as he's a very nice guy. I get the impression he'd talk as long as I kept asking questions, but wouldn't necessarily go into much detail if I didn't ask. I got a kick out of his self-description as being "old school" as we'll be doing a regular CT scan next rather than another PET scan in June (either he doesn't like getting patient's hopes up for the continual non-delivery of a cute puppy, or he likes the added detail of the regular CT scan on occasion as it has a higher degree of resolution than the CT info a PET scan delivers). This will allow us to see below the 2mm size for mets, but no metabolic information, and as half of the lung mets were below the 2mm size on the last scan, he wants to see where they're at.
In the meantime, side effects such as moderate to severe nausea have started to pop up in the early evenings, which have been controlled once I remembered that I had Ativan pills in the cabinet. I'll expect one more week or so of the occasional bout as well as the sound of helicopter whup whup effects when I stupidly stand up too quickly (you'd think I would remember that one by now... but it's not constant so that's my excuse). And apparently the tumor is supposed to show some aggravated swelling and soreness as the radiated cells are being slapped around (I'm thinking of a 20's style gangster voice as I type that).
So things are going decently. Mid next week we'll be in So Cal for Ki's graduation, and then off to AZ for a few days to see my mom. I also need to figure out some finance thingies as I need to pay the advocator group, and work out the back pay for the life insurance company coverage for the social security portion of my pay (sounds complicated, but I'm not really in the mood to go into details).
Hope all are having a fab May - the weather is teasing warmth, rain, and such here in lovely So Oregon. And here is a shot from the Napoli coast off Kauai from the trip Ki and I took to celebrate his finishing med school! I'll likely have to spend an inordinate amount of time over the next couple of months processing shots, but it was a lot of fun.
Tuesday, May 1, 2012
Voodoo Donuts and Sore Groins
The first of the two planned sessions for radiating my groin lymph node (Lymon) went smoothly today, and I made it home to rest for roughly a week until next Monday for the sequel treatment.
So far the worst side effect is just a fairly sore swollen lymph node, and according to the radiology staff, I should expect a delayed hit to my energy from a few days to about a week post each treatment. If my skin gets overly red and blisters they'll prescribe a creme to help. But I might not really have that happen? It's uncertain, since the dosage was extreme, but the treatment isn't daily. So you know (and you should) I like to say, "there's a creme for that" anytime someone mentions a potential skin related thing... so apparently there really is!
And to celebrate I stopped off at Portland's venerable Voodoo Donuts which happens to be down the road a bit from the hospital... eep! They're a fun shop (not sure if the original downtown location has reopened yet, but that's somewhat immaterial at the moment).
Here's a fun shot of me in Joshua Tree Park (in So Cal) from a little over a year ago when Ki and I decided to check it out while he was teaching down in Pomona. I thought the tree looked like it was flashing the rock hand signs :)
So far the worst side effect is just a fairly sore swollen lymph node, and according to the radiology staff, I should expect a delayed hit to my energy from a few days to about a week post each treatment. If my skin gets overly red and blisters they'll prescribe a creme to help. But I might not really have that happen? It's uncertain, since the dosage was extreme, but the treatment isn't daily. So you know (and you should) I like to say, "there's a creme for that" anytime someone mentions a potential skin related thing... so apparently there really is!
And to celebrate I stopped off at Portland's venerable Voodoo Donuts which happens to be down the road a bit from the hospital... eep! They're a fun shop (not sure if the original downtown location has reopened yet, but that's somewhat immaterial at the moment).
Here's a fun shot of me in Joshua Tree Park (in So Cal) from a little over a year ago when Ki and I decided to check it out while he was teaching down in Pomona. I thought the tree looked like it was flashing the rock hand signs :)
Monday, April 30, 2012
Tanning Bed Spot Check
So tomorrow is the day for the first radiation zap in my groin tumor (yes Ahnold... it is a tuhmah). I'm choosing to think of it as a quick little vanity spot tanning session for my pasty white above the junk zone :) I'm sure my popularity will increase after I'm no longer so obviously pale?
Nothing much else - hopping in the car to drive north and spend the night with friends in the bustling metro known as Lebanon, Oregon :)
Hopefully I won't have too much discomfort for the ride home tomorrow, but frankly I'm glad to have a week between the radiation (um... I mean tanning bed) appointments.
Nothing much else - hopping in the car to drive north and spend the night with friends in the bustling metro known as Lebanon, Oregon :)
Hopefully I won't have too much discomfort for the ride home tomorrow, but frankly I'm glad to have a week between the radiation (um... I mean tanning bed) appointments.
Tuesday, April 10, 2012
One Word - Parsnips!
Not too much of note since the good scan update from last week. I've booked my first visit with Dr Curti (my new primary Oncologist) for the 7th of May. I will likely wind up going between him and Roxanne (nurse practitioner) during office visits, who was pretty much the 3rd patient care provider during my IL2 sessions last Spring. She was a lot of fun to have during those super swell infusion cycles... (she was fun... but the cycles of IL2 were kind of a drag if you recall from the early blog entries).
The funniest thing I noticed was how she would go from relaxed yet very competent, to super serious and no nonsense when she would visit patients while with Dr Curti (he was kind of funny to banter with from my perspective, but perhaps it's intimidating to work with such a seasoned research doctor?).
One thing I noticed was how many more blog updates I had last year, vs the frequency of what I've posted since my treatments have gone from regular infusion stuff to pill based medication (and endless red tape). I'll try my best to keep up with the updates on a semi regular basis, but unless there is something noteworthy outside of the cancer progress, I don't think I'll be updating much with regards to my dinner plans, or whether Willam was truly a professional plant to up the glamour factor on Drag Race lol.
My music room is pretty much totally cleaned up and organized, which is really nice. Now I just have to do some wiring for a few outboard effects and synth modules (who still uses those these days right?). I figured if they were still in my possession I should try to use them or decide if they should be moved on to other pastures for possible use. I also need to figure out how to get into the monster cable power centers so I can either replace the fuses since they popped a couple of years back, as I'm tired of not running my gear through the power protection stuff etc.
I've discovered the delight that is cooking with parsnips... those no color fat carrot thingies... pretty cool actually, and they make for a great potato vibe once cooked enough. Who would have thought I'd be all eating leeks and parsnips?
This week I'll be visiting my mom in Phoenix, AZ (from Wed through Mon). That should be a nice trip to catch up with her and the extended family as well as just spend some quality time with the parental unit :) We're planning to drive over to Safford, AZ to check on the family grave site where my father was buried. The running joke between them was, whoever went first would get buried in the other's family cemetery. Since he was from lush Mississippi, and she was from rocky desert southern Arizona, it's a stark contrast. In the last few years, he went ahead and planned for a plot there in Safford since it was a better location for most of the family. It's kind of not a place you'd expect to see for a family grave site (unless you're from or have lived in a place like Safford). Think of small rocks and white and grey colored dirt surrounding the plots, and the occasional contraband tree's people have snuck in and planted in their family plots :). Classic desert scene.
I'm listening to a Marvin Gaye's "What's Going On" album (on CD ripped into itunes ... save us Neal Young!). It's a cool album from a bit before my time, but I enjoy the vibe. Oops... it slipped into Thom Yorke's solo album (singer from Radiohead) which is all glitch-tastic and stuff.
Oh and if anyone talks to the folks at Propellerhead, ask them to please add a save and/or song export to wav for Figure on the iPad... :)
And here is a very nostalgic shot I took back in Jacksonville, Fl close to where I lived from 1978 - 89 which was taken when I went back for my 20th high school reunion. Spanish moss... pretty, but don't go making a wig without baking it in the oven first... or you're likely to have some new buddies in your hair.
The funniest thing I noticed was how she would go from relaxed yet very competent, to super serious and no nonsense when she would visit patients while with Dr Curti (he was kind of funny to banter with from my perspective, but perhaps it's intimidating to work with such a seasoned research doctor?).
One thing I noticed was how many more blog updates I had last year, vs the frequency of what I've posted since my treatments have gone from regular infusion stuff to pill based medication (and endless red tape). I'll try my best to keep up with the updates on a semi regular basis, but unless there is something noteworthy outside of the cancer progress, I don't think I'll be updating much with regards to my dinner plans, or whether Willam was truly a professional plant to up the glamour factor on Drag Race lol.
My music room is pretty much totally cleaned up and organized, which is really nice. Now I just have to do some wiring for a few outboard effects and synth modules (who still uses those these days right?). I figured if they were still in my possession I should try to use them or decide if they should be moved on to other pastures for possible use. I also need to figure out how to get into the monster cable power centers so I can either replace the fuses since they popped a couple of years back, as I'm tired of not running my gear through the power protection stuff etc.
I've discovered the delight that is cooking with parsnips... those no color fat carrot thingies... pretty cool actually, and they make for a great potato vibe once cooked enough. Who would have thought I'd be all eating leeks and parsnips?
This week I'll be visiting my mom in Phoenix, AZ (from Wed through Mon). That should be a nice trip to catch up with her and the extended family as well as just spend some quality time with the parental unit :) We're planning to drive over to Safford, AZ to check on the family grave site where my father was buried. The running joke between them was, whoever went first would get buried in the other's family cemetery. Since he was from lush Mississippi, and she was from rocky desert southern Arizona, it's a stark contrast. In the last few years, he went ahead and planned for a plot there in Safford since it was a better location for most of the family. It's kind of not a place you'd expect to see for a family grave site (unless you're from or have lived in a place like Safford). Think of small rocks and white and grey colored dirt surrounding the plots, and the occasional contraband tree's people have snuck in and planted in their family plots :). Classic desert scene.
I'm listening to a Marvin Gaye's "What's Going On" album (on CD ripped into itunes ... save us Neal Young!). It's a cool album from a bit before my time, but I enjoy the vibe. Oops... it slipped into Thom Yorke's solo album (singer from Radiohead) which is all glitch-tastic and stuff.
Oh and if anyone talks to the folks at Propellerhead, ask them to please add a save and/or song export to wav for Figure on the iPad... :)
And here is a very nostalgic shot I took back in Jacksonville, Fl close to where I lived from 1978 - 89 which was taken when I went back for my 20th high school reunion. Spanish moss... pretty, but don't go making a wig without baking it in the oven first... or you're likely to have some new buddies in your hair.
Wednesday, April 4, 2012
Radiation Therapy and You ... and Tattoos
Well I'll just jump right in with the most important news I've had in the last year and recap the results of the PET scan from 4/2 and the oncologists' (yes 2) meetings from 4/3.
Best Parts:
The mets in my lungs have all shown strong reduction in size. The largest ones appear to be roughly halved in size, and a few of the tiny side mets (mini mets?) are showing no metabolic activity at all! This is the first time in the last year for any reduction in the cancer cells to have shown in my scans. It would certainly appear the generic Gleevec pills are working.
Mediocre Parts:
With the 2 mets in my hip/groin area, 1 has shown some reduction (the deeper one), but frikin' Lymon is holding steady at the same size from the scan back in December. Maybe if I had given that spot a nickname which would be less-playground-nightmare-enducing (something more normal, along the lines of Mark, or Phillip?), it'd be more inclined to show reduction in size.
Ambiguous Points:
Since we weren't able to get a scan when Lymon was really growing and pushing out of my groin back in January, and the size is now a bit under half of that noticeable protrusion, we can't claim 100% that all of the cancer is responding to the Gleevec. Plus the tumor kind of hurts from time to time when I do anything remotely strenuous, or have it poked and prodded by 2 doctors in one day... hmph.
Bottom Line:
Dr Lufkin said he's never seen a response to Gleevec from a melanoma patient similar to what I've experienced. It's worked for other cancers with the C Kit mutation, but only 2 of his melanoma patients have shown any response, so I'm chalking that up to extreme luck of the draw... hopefully the progress will continue as it has and the mets well all die in time.
Since Lymon hasn't shown reduction in a scan, and it's in a potentially bad spot for blocking arteries if too much pressure builds up (and no one wants a puffy fluid filled right leg), we decided to consult with one of the radiation oncologists up at the hospital. After meeting with Dr Solhjem we came up with a plan to blast the heck out of that particular tumor with a couple of radiation treatments. Apparently spot radiating can work for melanoma, but they have to use approx double the strength since it's resistant to frikin' everything. (as I'm typing this I just got a call and scheduled the appointments for this procedure - May 1st, and 7th).
And I got my first tattoos ... but unfortunately these were just very light blue dots placed strategically around the tumescent lymph node (Lymon) which they used for photographing the area (I was all... "hey if you're taking pics of my junk, these better not wind up on line... I mean I hadn't shaved down there or nothing!" The staff were pretty fun folks in this department, which really helps when you're doing prep for a radiation treatment, and I guess they also might enjoy someone with a sense of humor about it all). They also let me know I wouldn't need to shave up the area since the radiation would cause the hair in that area to fall off. Pretty high price for a Brazilian wax job (okay I don't think it will be that much radiation, but it's not like I'm getting a landing strip or some other fashion waxing lol).
So, sadly enough my first tattoo wasn't my personal protector design using Marvin the Martian crossed with a Japanese demon (they place the scary looking tattoos of demons on their body to ward off illness - I probably should have gone ahead and done it before last year eh?). But I'll take 4 super light dots in the area of my junk if it'll help say goodbye to Lymon. He'll be sorely missed (well at least until the blisters and red skin heal... yuk yuk). And yes... I have planned to get a tattoo of Marvin done up Japanese demon style :).
Also, the drummer and singer from my college funk metal band came to Portland to see me. It's been a long time since I've seen Kerry (the singer) and Bruce (less time since seeing Bruce, but still some years). Kerry is pretty hard to reach apparently, but Bruce called Kerry's parents and he was visiting... pretty great timing. Fun to see people who were really instrumental in my life back in the day and reconnect for a bit.
All in all, I'm not out of the woods, but having a good result sure does help. There's some serious perspective stuff going on. And here's a freshly touched photo - taken from my iPhone 3gs back in January and freshened up a tad :)
Best Parts:
The mets in my lungs have all shown strong reduction in size. The largest ones appear to be roughly halved in size, and a few of the tiny side mets (mini mets?) are showing no metabolic activity at all! This is the first time in the last year for any reduction in the cancer cells to have shown in my scans. It would certainly appear the generic Gleevec pills are working.
Mediocre Parts:
With the 2 mets in my hip/groin area, 1 has shown some reduction (the deeper one), but frikin' Lymon is holding steady at the same size from the scan back in December. Maybe if I had given that spot a nickname which would be less-playground-nightmare-enducing (something more normal, along the lines of Mark, or Phillip?), it'd be more inclined to show reduction in size.
Ambiguous Points:
Since we weren't able to get a scan when Lymon was really growing and pushing out of my groin back in January, and the size is now a bit under half of that noticeable protrusion, we can't claim 100% that all of the cancer is responding to the Gleevec. Plus the tumor kind of hurts from time to time when I do anything remotely strenuous, or have it poked and prodded by 2 doctors in one day... hmph.
Bottom Line:
Dr Lufkin said he's never seen a response to Gleevec from a melanoma patient similar to what I've experienced. It's worked for other cancers with the C Kit mutation, but only 2 of his melanoma patients have shown any response, so I'm chalking that up to extreme luck of the draw... hopefully the progress will continue as it has and the mets well all die in time.
Since Lymon hasn't shown reduction in a scan, and it's in a potentially bad spot for blocking arteries if too much pressure builds up (and no one wants a puffy fluid filled right leg), we decided to consult with one of the radiation oncologists up at the hospital. After meeting with Dr Solhjem we came up with a plan to blast the heck out of that particular tumor with a couple of radiation treatments. Apparently spot radiating can work for melanoma, but they have to use approx double the strength since it's resistant to frikin' everything. (as I'm typing this I just got a call and scheduled the appointments for this procedure - May 1st, and 7th).
And I got my first tattoos ... but unfortunately these were just very light blue dots placed strategically around the tumescent lymph node (Lymon) which they used for photographing the area (I was all... "hey if you're taking pics of my junk, these better not wind up on line... I mean I hadn't shaved down there or nothing!" The staff were pretty fun folks in this department, which really helps when you're doing prep for a radiation treatment, and I guess they also might enjoy someone with a sense of humor about it all). They also let me know I wouldn't need to shave up the area since the radiation would cause the hair in that area to fall off. Pretty high price for a Brazilian wax job (okay I don't think it will be that much radiation, but it's not like I'm getting a landing strip or some other fashion waxing lol).
So, sadly enough my first tattoo wasn't my personal protector design using Marvin the Martian crossed with a Japanese demon (they place the scary looking tattoos of demons on their body to ward off illness - I probably should have gone ahead and done it before last year eh?). But I'll take 4 super light dots in the area of my junk if it'll help say goodbye to Lymon. He'll be sorely missed (well at least until the blisters and red skin heal... yuk yuk). And yes... I have planned to get a tattoo of Marvin done up Japanese demon style :).
Also, the drummer and singer from my college funk metal band came to Portland to see me. It's been a long time since I've seen Kerry (the singer) and Bruce (less time since seeing Bruce, but still some years). Kerry is pretty hard to reach apparently, but Bruce called Kerry's parents and he was visiting... pretty great timing. Fun to see people who were really instrumental in my life back in the day and reconnect for a bit.
All in all, I'm not out of the woods, but having a good result sure does help. There's some serious perspective stuff going on. And here's a freshly touched photo - taken from my iPhone 3gs back in January and freshened up a tad :)
Sunday, March 18, 2012
Insurance Cards and Sleet
The insurance finally issued my updated card with some new numbers etc. I'm guessing this would be why the clinic up in Portland has had a difficult time getting my appointments approved. I guess in most situations where people go on Cobra, they're not waiting for PET scan appointments and such to be okayed...
I'll be calling tomorrow to update the oncology clinic with my new digits so we can confirm the coming Portland hospital trip. Things in general are hopefully close to being normalized again in terms of knowing that all my t's are crossed and i's are ... well dumb i's... you need a dot if they're lower case and none if they're grown up and stuff. (Okay a so-so attempt at humor... likely not a solid one as I just saw John Carter of Mars which was a C + movie and has perhaps left a lingering creative gulch in my funny bone.)
Probably a good sign of my expectations for continued health is my appointment to have Direct TV installed tomorrow. You have to make a contract to get the good deal, and I guess I was putting off switching from cable to the less expensive, yet equally satisfying service, was a lingering doubt that I would need it for the full 2 years. Frankly that's a pretty lame thing to realize, but it's also not such a surprise. This entire last year has pretty much forced me to think, "okay, what's next" after each step has been taken. So while I have been stedfast in not allowing prolonged doubt as to my survival, it's been something that is somewhat an inevitable specter.
The timing for that paragraph is nice as the sleet and snow bits that were falling have just stopped and the blue sky is pouring into the 2 skylights here in my music room. So while I'm not taking things for granted, I do feel fairly optimistic about my current direction. Maybe I will get a kitty with my next PET scan!
So this is a short and sweet update - no real drama, and general optimism would be the current state of things. I'll post a shot from my trip back in 2005 to China from the Great Wall (where I stupidly took the wrong way back to the parking lot and wound up on the opposite side of the mountain from the group... and somehow convinced a man with the narrowest van EVER to drive me to the parking lot, with him not understanding English and me knowing zero Chinese...). Sadly I appear to have saved the bulk of my photos from that China trip to a location that is no longer within my grasp (meaning I've lost all of the original pics). That pretty well stinks, but fortunately I still have about 10 shots that I had saved elsewhere to play around with at a later date.
Keep on Truckin' ya'll...
I'll be calling tomorrow to update the oncology clinic with my new digits so we can confirm the coming Portland hospital trip. Things in general are hopefully close to being normalized again in terms of knowing that all my t's are crossed and i's are ... well dumb i's... you need a dot if they're lower case and none if they're grown up and stuff. (Okay a so-so attempt at humor... likely not a solid one as I just saw John Carter of Mars which was a C + movie and has perhaps left a lingering creative gulch in my funny bone.)
Probably a good sign of my expectations for continued health is my appointment to have Direct TV installed tomorrow. You have to make a contract to get the good deal, and I guess I was putting off switching from cable to the less expensive, yet equally satisfying service, was a lingering doubt that I would need it for the full 2 years. Frankly that's a pretty lame thing to realize, but it's also not such a surprise. This entire last year has pretty much forced me to think, "okay, what's next" after each step has been taken. So while I have been stedfast in not allowing prolonged doubt as to my survival, it's been something that is somewhat an inevitable specter.
The timing for that paragraph is nice as the sleet and snow bits that were falling have just stopped and the blue sky is pouring into the 2 skylights here in my music room. So while I'm not taking things for granted, I do feel fairly optimistic about my current direction. Maybe I will get a kitty with my next PET scan!
So this is a short and sweet update - no real drama, and general optimism would be the current state of things. I'll post a shot from my trip back in 2005 to China from the Great Wall (where I stupidly took the wrong way back to the parking lot and wound up on the opposite side of the mountain from the group... and somehow convinced a man with the narrowest van EVER to drive me to the parking lot, with him not understanding English and me knowing zero Chinese...). Sadly I appear to have saved the bulk of my photos from that China trip to a location that is no longer within my grasp (meaning I've lost all of the original pics). That pretty well stinks, but fortunately I still have about 10 shots that I had saved elsewhere to play around with at a later date.
Keep on Truckin' ya'll...
Saturday, March 10, 2012
Love the One & Fight the Power
Thanks to Cameron for the oodles of old fun tunes :) I'm listening to the Isley Brothers play Love the One (you're with) leading into Fight The Power. Makes a pretty funny title combo.
So it would appear my Cobra account was finally paid for Feb and March (at least the company doesn't show either month's payment as due). I'm still waiting for confirmation for my next appointment and PET scan which if all is in place will happen on April 2nd and 3rd. The scan is slated for the 2nd, cause it wouldn't do much good to meet with the doc before ya know...
Ya know... Fight The Power is a lot more groovy of a song than Love the One... just sayin' ya know...
So in the meantime I've been immersed in a handful of fairly mild adventures over the last few weeks. I've sold 3 guitars (goodbye old stringed friends) and a fairly substantial digital mixer all of which are very welcome sources of fundage for a variety of needs and wants ... ya know...
WARNING THE FOLLOWING IS BASICALLY A RUN ON STORY WITH OCCASIONAL PUNCTUATION AND PARAGRAPH BREAKS... NOT MUCH TO DO WITH THE HEALTH STUFF OTHER THAN THE OCCURRENCE OF A RATHER LONG NAP AS A RESULT.
One of those needs may be a new set of tires for my car. You always think it's totally rad to drive around in a nifty car with 18" wide and flat tires until you have to replace them... could be worse I suppose, but when I do bite the bullet and replace them it'll be around $600 (or whatever more I wind up paying...). I seem to remember that was the lower range I could spend for the tires last time, and the look the salesman gave me when I asked what kind of mileage warranty I would get is still with me 2 years later ... (hint... the more expensive the tires, the less chance they'll give any warranty - I mean it's not like people tend to drive fast and aggressively with such fine inspirations to cautious driving right?).
I got to test my physical resolve last weekend while up at a cabin in the snowy mountain lake area close by known as Hyatt Lake. A couple of close friends moved back to Oregon (yay for Daniel and Greg coming back!), and had a celebratory hang over a few days up there. Of course me and my brilliance didn't think my Volvo might not be the best choice of vehicle to take up the steep hills where the snow on the road had only been lightly cleared into a single lane... (if my tires weren't pretty done for after so many trips to Portland and back - 13 last year - I might have fared better). So after sliding backwards a bit I decided to retreat and park at the Greenspings Inn where the owners were amazingly kind and allowed me to leave my car.
Daniel came and picked me up (might have had something to do with my having the components for dinner that night in my car... and Greg getting all hungry and tipsy lol), and then he, Steve and I found another friend who had become lost, and guided him to the Greensprings Inn. Well he (the friend who will be anonymous lol) wasn't quite into leaving his vehicle and since he had all that snow driving experience from So Cal, decided to try to make it over the hills. You can see where this is going... ya know...
So between him and the surrogate driver (Steve who is from the Susanville area in the CA mountains near to Reno) the car just wasn't going to make it over the icy hill where I had slid backwards. And there was even a moment of the car sliding downhill with Steve (read - snow expert) driving and said anonymous friend jumping out of the passenger door :) hehe - I can say that with the hehe and smily thing as no one was hurt... ya know. And it was funny since the snow which the car slid into was thick enough to keep it from anything harmful.
In the end the car wound up stuck in the snow, and we had to push it out in a sideways fashion to get the front wheels able to point downhill and able to drive again. This is probably the ONLY instance where I was glad to be carrying the additional convalescence weight... cause it was totally the reason the car was able to be pushed around on the hill in the snow and ice. So back to the Greenspings Inn, and then to the cabin.
Moral of the story... drive to the Hyatt Lake area via Dead Indian Memorial hwy rather than the Greensprings hwy when you have bald tires and a modicum of caution (hello Greg), particularly if you are coming up after the hill has had all of the snow cover roasted down to ice by someone with a rear wheel drive who had been stuck, became impatient, and then raced over the hill almost hitting the folks coming to save him ... (see last driver reference ;).
Any way... I was tired enough from this deal and a walk the next day (to attempt to drive the cars over in the day) to sleep most of Sunday afternoon at home. Which was very nice. A little exercise never hurt.
And that snowy goodness would be why I'm sharing this lovely shot from a trip to Kauai a handful of years back.
So it would appear my Cobra account was finally paid for Feb and March (at least the company doesn't show either month's payment as due). I'm still waiting for confirmation for my next appointment and PET scan which if all is in place will happen on April 2nd and 3rd. The scan is slated for the 2nd, cause it wouldn't do much good to meet with the doc before ya know...
Ya know... Fight The Power is a lot more groovy of a song than Love the One... just sayin' ya know...
So in the meantime I've been immersed in a handful of fairly mild adventures over the last few weeks. I've sold 3 guitars (goodbye old stringed friends) and a fairly substantial digital mixer all of which are very welcome sources of fundage for a variety of needs and wants ... ya know...
WARNING THE FOLLOWING IS BASICALLY A RUN ON STORY WITH OCCASIONAL PUNCTUATION AND PARAGRAPH BREAKS... NOT MUCH TO DO WITH THE HEALTH STUFF OTHER THAN THE OCCURRENCE OF A RATHER LONG NAP AS A RESULT.
One of those needs may be a new set of tires for my car. You always think it's totally rad to drive around in a nifty car with 18" wide and flat tires until you have to replace them... could be worse I suppose, but when I do bite the bullet and replace them it'll be around $600 (or whatever more I wind up paying...). I seem to remember that was the lower range I could spend for the tires last time, and the look the salesman gave me when I asked what kind of mileage warranty I would get is still with me 2 years later ... (hint... the more expensive the tires, the less chance they'll give any warranty - I mean it's not like people tend to drive fast and aggressively with such fine inspirations to cautious driving right?).
I got to test my physical resolve last weekend while up at a cabin in the snowy mountain lake area close by known as Hyatt Lake. A couple of close friends moved back to Oregon (yay for Daniel and Greg coming back!), and had a celebratory hang over a few days up there. Of course me and my brilliance didn't think my Volvo might not be the best choice of vehicle to take up the steep hills where the snow on the road had only been lightly cleared into a single lane... (if my tires weren't pretty done for after so many trips to Portland and back - 13 last year - I might have fared better). So after sliding backwards a bit I decided to retreat and park at the Greenspings Inn where the owners were amazingly kind and allowed me to leave my car.
Daniel came and picked me up (might have had something to do with my having the components for dinner that night in my car... and Greg getting all hungry and tipsy lol), and then he, Steve and I found another friend who had become lost, and guided him to the Greensprings Inn. Well he (the friend who will be anonymous lol) wasn't quite into leaving his vehicle and since he had all that snow driving experience from So Cal, decided to try to make it over the hills. You can see where this is going... ya know...
So between him and the surrogate driver (Steve who is from the Susanville area in the CA mountains near to Reno) the car just wasn't going to make it over the icy hill where I had slid backwards. And there was even a moment of the car sliding downhill with Steve (read - snow expert) driving and said anonymous friend jumping out of the passenger door :) hehe - I can say that with the hehe and smily thing as no one was hurt... ya know. And it was funny since the snow which the car slid into was thick enough to keep it from anything harmful.
In the end the car wound up stuck in the snow, and we had to push it out in a sideways fashion to get the front wheels able to point downhill and able to drive again. This is probably the ONLY instance where I was glad to be carrying the additional convalescence weight... cause it was totally the reason the car was able to be pushed around on the hill in the snow and ice. So back to the Greenspings Inn, and then to the cabin.
Moral of the story... drive to the Hyatt Lake area via Dead Indian Memorial hwy rather than the Greensprings hwy when you have bald tires and a modicum of caution (hello Greg), particularly if you are coming up after the hill has had all of the snow cover roasted down to ice by someone with a rear wheel drive who had been stuck, became impatient, and then raced over the hill almost hitting the folks coming to save him ... (see last driver reference ;).
Any way... I was tired enough from this deal and a walk the next day (to attempt to drive the cars over in the day) to sleep most of Sunday afternoon at home. Which was very nice. A little exercise never hurt.
And that snowy goodness would be why I'm sharing this lovely shot from a trip to Kauai a handful of years back.
Tuesday, February 28, 2012
Stuff for Stuff and the Like...maps for the Iraq?
Since my last update the shrinkage of Lymon has seemed to slow down a fair bit, but even with the slower progress, I can say it's smaller than it was when I last posted. Hopefully this trend will continue and the Imati-blah blah (read Gleevec) will also get the tumors I can't see or feel under control as well. I'm certainly not in any hurry to feel the ones in my lungs.
In general the side effects continue to mellow. I'm not feeling quite as tired, and the impending doom of chest fizzing mild heartburn has stopped (crosses fingers to not see that again). I still haven't started going to the gym yet, but I totally am gonna... like for sure.
And speaking of beauty pageant inspired geography (google Miss Teen South Carolina if you need the reference)... I'm selling off some gear to fund a variety of things such as and the like, personal projects, gas, wild vacations to the border (well the border of Washington State and Oregon - where Portland and my oncology clinic is located), and the inexplicably high price of the gas bill for the house last month... hmph.
such as ... and the like... (okay I'll stop with the maps for the Iraq reference :)
I'm still waiting to schedule my PET scan for the end of March as the Cobra company hasn't received the payment from the cancer clinic financial councilor (she sent it last Tuesday apparently). The upside to this is that I don't have to pay for my insurance while on Cobra... just the same copays such as and the like (okay so one last time...). From what I've seen in forums the copay for real Gleevec can be a lot more than what I'm paying per month to get mine from India, so having the hospital take care of the Cobra cost pretty much makes me a little ahead on that count.
Okay so it's easier for me to just share this one rather than make you hunt for it... and for the record, she was pretty cool about it when she made an appearance on Tosh.0 in her web redemption.
http://www.youtube.com/watch?v=qQdhMSEqhfg
So thanks to all for the kind thoughts and supporting words. I'll continue to focus on progress so I can make a change from fighting this thing to recovering from it. Here's a shot to enjoy - I took this when my sister Liz was visiting at the end of 2010 at the Oregon coast.
Okay so it's easier for me to just share this one rather than make you hunt for it... and for the record, she was pretty cool about it when she made an appearance on Tosh.0 in her web redemption.
http://www.youtube.com/watch?v=qQdhMSEqhfg
So thanks to all for the kind thoughts and supporting words. I'll continue to focus on progress so I can make a change from fighting this thing to recovering from it. Here's a shot to enjoy - I took this when my sister Liz was visiting at the end of 2010 at the Oregon coast.
Monday, February 13, 2012
Lymon the not-as-swollen Lymph Node
My latest update includes (but is not limited to):
- Lump in groin likely the lymph node
- Said Lymph node now has a name (Lymon)
- Noticeable changes to Lymon's size
- Brief hello and goodbye visit to the Oncologist in Portland
- The surprise phone call from the billing group at my oncologist's office telling me my insurance wasn't active any longer... received while I was driving up to to Portland (the day of the visit)
- Confirmation call made to my company's HR benefits coordinator that I was supposed to have received a letter already to let me know I would be getting a letter from a company with Cobra paperwork (this letter was mailed from the company 2 days before my appointment... got it in the mail the day after the appointment)
- Confusion on my part as to what medical leave meant and a follow up call planned this week to discuss this situation with the benefits coordinator
- One of those questions being, what exactly the E.A.P. portion of my package was supposed to have covered...?
Okay so enough with the weird attempt at a format exploration (I was writing this while listening to a Crank Yankers prank phone call where Wanda Sykes was messing with a prison receptionist. She wanted to know how to sign up as a provider for conjugal visits ... for, well... any of the prisoners :).
So I'm looking at my cobra paperwork, and the Cancer Support Services Financial Advisor at the Portland hospital is helping me decide how to fill out this not-so-confusing single page of boxes (well how to place an X in them... and you know I'm really more of a check-the-box kind of guy... but when it's official you better get your X's down ya know?). I need to find out if the E.A.P. benefit means the company will pay my Cobra copay, or if it's just 3 random letters that would cost an additional $2.11 each month to keep in my roster.
The nice thing about showing up to just a doctor visit (thank goodness it wasn't a $3k scan visit... ) when you're coverage is temporarily not active, is they all jump over backwards to try and help you get your stuff lined up and such. Providence might even pay my Cobra premium which I guess isn't such a large amount when you have an ongoing cancer patient relationship? But corporate finances aside, it is a very nice feeling to run into this kind of scenario and have multiple people talk to you immediately and let you know you're going to be covered. (They also are well aware that I'm buying my own medication and I think want to ensure I'm taking advantage of the programs they have in place - I would guess there is some kind of gubmint reimbursement scenario, at least I remember being in college and getting gubmint cheese... No flavor but also no charge)
So bottom line with regards to my insurance - I'm not worried, as I'll be covered again shortly.
The lymph node lump (henceforth to be referred to by it's proper name "Lymon"), has shown some SERIOUS shrinkage over the last 3 weeks on the generic Gleevec. From what I can see, and Ki confirms, it's down to about 30-40% the size it had become. And I'm not experiencing the 23-hr delayed fainting spells post pill-chompage I had earlier on. This is also a good thing.
According to Dr Lufkin, it's been not uncommon to have really large tumors (much larger than mine) with his GIST cancer patients (who are C Kit positive) see a hyper rapid reduction with Gleevec. While my progress hasn't been quite as extreme as the examples he shared, Ki mentioned it's not always good for your system to have to process dead tumor bits in a massive all-at-once stopping up of your kidneys moment. As this can cause your systems to also not really be able to do their normal jobs. And a reduction like I seem to be seeing in Lymon after just 3 weeks really makes me feel good.
Follow up scan will be scheduled for the 3rd or 4th week in March (we'll set the date as soon as I get the Cobra stuff lined up). I don't want to get overly optimistic about the rapid decline in Lymon's waist line, so I'm holding off to get the inside picture with the PET scan (ooh maybe I'll get a cat this time - I hear they're good for cancer patients).
Sadly, I'll also have to make a decision regarding my oncologist, as Dr Lufkin is moving to a non-Providence Hospital cancer group (across the street) in early April. If I don't move my treatment with him, I'll wind up working with Dr Curti who is one of the head researchers there and a complete Melanoma specialist. I worked with him and Dr Lufkin jointly during my IL2 Spring Sessions (spring session M anyone? comment if you like that album...). If Providence is taking care of my Cobra co pay... well that won't be a hard decision to stay there, as I quite liked my interactions with Dr Curti. But I do really enjoy working with Dr Lufkin, and he is a D.O. (Ki is going to be a D.O. and ya gotta be loyal ... :)
And on a Ki related note - he was accepted to his top choice for residency up at Corvallis (I'm happy he's not going to #2 or #3... Ohio and Michigan.) Both are great programs, but Corvallis will be better for him. So major congrats to my partner for being top pick for his first choice! Apparently Corvallis was able to secure all 3 of their top applicants for the psychiatry residency, so it's definitely an honor for him to match there.
XOXO and stuff - and we finally had a dusting of snow. Here's a shot from Ashland after some snow had just melted from the ground (taken last year... but retouched a little recently :)
- Lump in groin likely the lymph node
- Said Lymph node now has a name (Lymon)
- Noticeable changes to Lymon's size
- Brief hello and goodbye visit to the Oncologist in Portland
- The surprise phone call from the billing group at my oncologist's office telling me my insurance wasn't active any longer... received while I was driving up to to Portland (the day of the visit)
- Confirmation call made to my company's HR benefits coordinator that I was supposed to have received a letter already to let me know I would be getting a letter from a company with Cobra paperwork (this letter was mailed from the company 2 days before my appointment... got it in the mail the day after the appointment)
- Confusion on my part as to what medical leave meant and a follow up call planned this week to discuss this situation with the benefits coordinator
- One of those questions being, what exactly the E.A.P. portion of my package was supposed to have covered...?
Okay so enough with the weird attempt at a format exploration (I was writing this while listening to a Crank Yankers prank phone call where Wanda Sykes was messing with a prison receptionist. She wanted to know how to sign up as a provider for conjugal visits ... for, well... any of the prisoners :).
So I'm looking at my cobra paperwork, and the Cancer Support Services Financial Advisor at the Portland hospital is helping me decide how to fill out this not-so-confusing single page of boxes (well how to place an X in them... and you know I'm really more of a check-the-box kind of guy... but when it's official you better get your X's down ya know?). I need to find out if the E.A.P. benefit means the company will pay my Cobra copay, or if it's just 3 random letters that would cost an additional $2.11 each month to keep in my roster.
The nice thing about showing up to just a doctor visit (thank goodness it wasn't a $3k scan visit... ) when you're coverage is temporarily not active, is they all jump over backwards to try and help you get your stuff lined up and such. Providence might even pay my Cobra premium which I guess isn't such a large amount when you have an ongoing cancer patient relationship? But corporate finances aside, it is a very nice feeling to run into this kind of scenario and have multiple people talk to you immediately and let you know you're going to be covered. (They also are well aware that I'm buying my own medication and I think want to ensure I'm taking advantage of the programs they have in place - I would guess there is some kind of gubmint reimbursement scenario, at least I remember being in college and getting gubmint cheese... No flavor but also no charge)
So bottom line with regards to my insurance - I'm not worried, as I'll be covered again shortly.
The lymph node lump (henceforth to be referred to by it's proper name "Lymon"), has shown some SERIOUS shrinkage over the last 3 weeks on the generic Gleevec. From what I can see, and Ki confirms, it's down to about 30-40% the size it had become. And I'm not experiencing the 23-hr delayed fainting spells post pill-chompage I had earlier on. This is also a good thing.
According to Dr Lufkin, it's been not uncommon to have really large tumors (much larger than mine) with his GIST cancer patients (who are C Kit positive) see a hyper rapid reduction with Gleevec. While my progress hasn't been quite as extreme as the examples he shared, Ki mentioned it's not always good for your system to have to process dead tumor bits in a massive all-at-once stopping up of your kidneys moment. As this can cause your systems to also not really be able to do their normal jobs. And a reduction like I seem to be seeing in Lymon after just 3 weeks really makes me feel good.
Follow up scan will be scheduled for the 3rd or 4th week in March (we'll set the date as soon as I get the Cobra stuff lined up). I don't want to get overly optimistic about the rapid decline in Lymon's waist line, so I'm holding off to get the inside picture with the PET scan (ooh maybe I'll get a cat this time - I hear they're good for cancer patients).
Sadly, I'll also have to make a decision regarding my oncologist, as Dr Lufkin is moving to a non-Providence Hospital cancer group (across the street) in early April. If I don't move my treatment with him, I'll wind up working with Dr Curti who is one of the head researchers there and a complete Melanoma specialist. I worked with him and Dr Lufkin jointly during my IL2 Spring Sessions (spring session M anyone? comment if you like that album...). If Providence is taking care of my Cobra co pay... well that won't be a hard decision to stay there, as I quite liked my interactions with Dr Curti. But I do really enjoy working with Dr Lufkin, and he is a D.O. (Ki is going to be a D.O. and ya gotta be loyal ... :)
And on a Ki related note - he was accepted to his top choice for residency up at Corvallis (I'm happy he's not going to #2 or #3... Ohio and Michigan.) Both are great programs, but Corvallis will be better for him. So major congrats to my partner for being top pick for his first choice! Apparently Corvallis was able to secure all 3 of their top applicants for the psychiatry residency, so it's definitely an honor for him to match there.
XOXO and stuff - and we finally had a dusting of snow. Here's a shot from Ashland after some snow had just melted from the ground (taken last year... but retouched a little recently :)
Monday, January 30, 2012
2 Weeks and Counting
Last night marked the official 2 week point of taking the generic Gleevec. So far my energy levels have gone down a bit, but not precipitously, and I think they're likely to increase as I adapt to taking this medication. At least the nightly 23-hour delay I was experiencing (with a sharp feeling of faintness for about 2-5 minutes) has stopped. It was super consistent and I'm paying close attention to what's happening. There was also some occasional heart pounding that would last for about an hour, but I haven't had that happen in days.
The kind of scary lump I was noticing in my right groin (likely the soft tissue spot that was shown to have grown in December) really seems to be reduced already. I had Ki measure it and he wasn't certain, but I'm going to take a personal stand and claim reduction :). To be fair he only saw it once, and it was about a month back. Of course we'll know for certain the impact when I have my next scan, which is likely to happen in a month and a half (roughly)?
I'll be seeing my oncologist up in Portland on the 13th of February, just to make sure I'm doing okay (per his request) and not having any significant side effects. Ki and I will spend the Sunday night before the appointment with his friends (well they're my friends too... but really more his friends as I don't like playing Mario games on the Wii as much as they all do - give me some Galaga and watch out, but Mario...? he was the barrel jumper in Donkey Kong :) Now if they had a Mario makes pizza game... wonder if he'd prefer Neapolitan pizza over Roman style?
Ki is back home for the remainder of his med school days finishing up his rotation work here in the Rogue valley. He'll find out where he matches for residency in a month or so, but we're both hoping for Corvallis at this point.
I've had fun retouching some old photos - like this gem from Crater Lake. The water gets a little noisy, but whatever :) It's like ker-pow and stuff don't you think?
The kind of scary lump I was noticing in my right groin (likely the soft tissue spot that was shown to have grown in December) really seems to be reduced already. I had Ki measure it and he wasn't certain, but I'm going to take a personal stand and claim reduction :). To be fair he only saw it once, and it was about a month back. Of course we'll know for certain the impact when I have my next scan, which is likely to happen in a month and a half (roughly)?
I'll be seeing my oncologist up in Portland on the 13th of February, just to make sure I'm doing okay (per his request) and not having any significant side effects. Ki and I will spend the Sunday night before the appointment with his friends (well they're my friends too... but really more his friends as I don't like playing Mario games on the Wii as much as they all do - give me some Galaga and watch out, but Mario...? he was the barrel jumper in Donkey Kong :) Now if they had a Mario makes pizza game... wonder if he'd prefer Neapolitan pizza over Roman style?
Ki is back home for the remainder of his med school days finishing up his rotation work here in the Rogue valley. He'll find out where he matches for residency in a month or so, but we're both hoping for Corvallis at this point.
I've had fun retouching some old photos - like this gem from Crater Lake. The water gets a little noisy, but whatever :) It's like ker-pow and stuff don't you think?
Wizard Hat Island - Crater Lake Oregon by Doss Shropshire
Sunday, January 15, 2012
A Pill Popping Fool... Finally
Wonderful to come home today after spending a few very cool days with the family (big thanks again to Liz for the ticket help... Even if I had to fly *cough* Delta lol - although the flight crew on the flight from Orlando were all burly dudes... not unpleasant haha :), and the real news here is to find my faux Gleevec had come in the mail!
So tonight I'll be starting the first pill with dinner. And later this week I'll contact my oncologist up in Portland to schedule a scan and follow up meeting in two months.
I probably need to read up on the possible side effects in case my toenails turn green and start to fall off... Or if my tongue starts to sweat and swell... Or hmmm you get the gist.
Oh and in case anyone is curious, the Mt Everest roller coaster at the Disney Animal Park kinda didn't suck like most Disney coasters in terms of not being overly mellow. Who'd have thought that day would come?
And I'm really looking forward to Ki being back home in couple of weeks!
So tonight I'll be starting the first pill with dinner. And later this week I'll contact my oncologist up in Portland to schedule a scan and follow up meeting in two months.
I probably need to read up on the possible side effects in case my toenails turn green and start to fall off... Or if my tongue starts to sweat and swell... Or hmmm you get the gist.
Oh and in case anyone is curious, the Mt Everest roller coaster at the Disney Animal Park kinda didn't suck like most Disney coasters in terms of not being overly mellow. Who'd have thought that day would come?
And I'm really looking forward to Ki being back home in couple of weeks!
Wednesday, January 11, 2012
Breathe in, Exhale, Repeat
Quick update - medication has shipped from India, and should arrive in one to two weeks. Apparently there is no tracking number as it had to ship USPS and wasn't insured.
I'm feeling fine physically aside from a hard lump in my upper right groin which i can feel from the outside and is likely the lymph node or bonus bit of growth from the last scan taken in December. It would appear I still have some recovery time from the surgery as well since there has been some light blood showing up on occasion in my stools. Either that or the original site is growing again.
Once the generic Gleevec arrives it should shrink the bump, and frankly this will give me a way to gauge the progress. And if the bleeding is an
indicator of new old growth (we like Old Growth Trees here in So Oregon.., just not new old growth tumors), the meds should take care of that as well.
Big happy fun time news!
I finally got my disability pay, and it was retro to Aug 1. Now I can go shopping and eat at expensive restaurants and fly on glamorous trips to Angkor Watt and dance with the idiots who actually believe the world is ending this year down in central Mexico at the Mayan ruins (their calendar cycle ends, just like any calendar ends... Why do people need to believe all the end of the world cranks?) and ... Where was I? Oh yeah, thinking of extravagances that I can't afford as my primary monetary expense will be paying off my credit card bill and seeing what I owe on taxes (since I had no idea how much to withhold I didn't have any taxes held). That will change once I have my taxes done in a week or two. It's all complicated this year I suppose since the disability check was cut at the end of last year instead of this year. I wonder if food could be written off as a medical expense? Hehe.
I'll be spending the next few days with my family (minus Ki as he has an intense medical rotation right now) at Disney-world in Orlando. It'll be interesting to see my newest niece for the first time (she's already 3... I'm a bad uncle). Big thanks to Liz for using some of those international frequent flyer miles to help me get there!
Let's see... Goals for now are to eat healthier, get some exercise going, sell some gear, and if I sell enough... Get a purple guitar! Yeah :). Hahaha
Hmmm Muzak is "We've Only Just Begun.". Go go hip Medford airport :)
I'm feeling fine physically aside from a hard lump in my upper right groin which i can feel from the outside and is likely the lymph node or bonus bit of growth from the last scan taken in December. It would appear I still have some recovery time from the surgery as well since there has been some light blood showing up on occasion in my stools. Either that or the original site is growing again.
Once the generic Gleevec arrives it should shrink the bump, and frankly this will give me a way to gauge the progress. And if the bleeding is an
indicator of new old growth (we like Old Growth Trees here in So Oregon.., just not new old growth tumors), the meds should take care of that as well.
Big happy fun time news!
I finally got my disability pay, and it was retro to Aug 1. Now I can go shopping and eat at expensive restaurants and fly on glamorous trips to Angkor Watt and dance with the idiots who actually believe the world is ending this year down in central Mexico at the Mayan ruins (their calendar cycle ends, just like any calendar ends... Why do people need to believe all the end of the world cranks?) and ... Where was I? Oh yeah, thinking of extravagances that I can't afford as my primary monetary expense will be paying off my credit card bill and seeing what I owe on taxes (since I had no idea how much to withhold I didn't have any taxes held). That will change once I have my taxes done in a week or two. It's all complicated this year I suppose since the disability check was cut at the end of last year instead of this year. I wonder if food could be written off as a medical expense? Hehe.
I'll be spending the next few days with my family (minus Ki as he has an intense medical rotation right now) at Disney-world in Orlando. It'll be interesting to see my newest niece for the first time (she's already 3... I'm a bad uncle). Big thanks to Liz for using some of those international frequent flyer miles to help me get there!
Let's see... Goals for now are to eat healthier, get some exercise going, sell some gear, and if I sell enough... Get a purple guitar! Yeah :). Hahaha
Hmmm Muzak is "We've Only Just Begun.". Go go hip Medford airport :)
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