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Index » Radio Paradise/General » General Discussion » Chemosabe, the further adventures of ... Page: Previous  1, 2, 3, 4  Next
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kurtster

kurtster Avatar

Location: drifting
Gender: Male


Posted: Jul 6, 2017 - 6:47am

Top-o-de morning !!
Just got back from downtown and got to hear the words I was looking to hear.  Local, indolent, very, very early (again), could do nothing more if I so desired.  Could do a light weight chemo, Rituxan again or as everyone else has suggested, some very low dose radiation as my type of NHL responds extremely well to it.

It was really good to see my transplant doc again in the new digs at the Mothership.  He put everything into proper perspective and I feel good about where I am in all of this.  Its not gloom and doom, time to get my affairs in order stuff.  Its like I got a zit and we lanced it and we move on.  Do pay close attention to your body cuz it can tell you things if you are in tune with it.  Its pretty amazing all of the advances that have been made in the treatments and options.

So I have decided to give the radiation a shot, even though its one thing I said I would never do.  So with a little nap time, it'll be off to the other hospital to check out the radiation stuff and meet the team this afternoon.

I think that I can now start unwinding all the angst and thoughts that come with your first relapse.  Being in the best of hands, its more like I need to worry about getting hit by a bus more than my cancer.

Its been a scary and interesting past few months and it has helped me to redefine and refocus my priorities.  That will be the gift of this latest experience.  I have been drifting aimlessly wondering about what would happen when it came back.  Now I have been there and done that and can move on and even try and put Chemosabe back up on the shelf.

Thanks ever so much for the thoughts, concerns and prayers.  It has helped me get through this by giving me a place to vent and reflect.

Love you all and this place.




sirdroseph

sirdroseph Avatar

Location: Yes
Gender: Male


Posted: Jul 6, 2017 - 5:27am

Kurtster, my positive thoughts have been released into the universe. May they find you.
meower

meower Avatar

Location: i believe, i believe, it's silly, but I believe
Gender: Female


Posted: Jul 6, 2017 - 4:47am


kcar

kcar Avatar



Posted: Jul 5, 2017 - 7:44pm

 kurtster wrote:
Big day tomorrow.  4.30 wake up.  7 AM down at the Mothership to hear what my transplant onc has to say about my future.  Then at 1.30 PM to another system hospital cross town to meet with the new radiation onc and see what he wants to do.  Its also trash day, maybe, cuz of the holiday and big laundry day.  We have both been sicker than we have been in a long time battling an upper respiratory thing.  The TV was off from Saturday until yesterday evening to watch the Tribe get beat 1-0 by SD.  Hopefully, we'll both have enough energy to get it all done.
 
P had to stop taking her anti depressant cuz of an interaction with the antibiotic so its been real fun, not.  
We're both thoroughly whupped already just thinking about tomorrow.

And so it goes ...


 
Good luck, Kurt! May the gods be with you! 
kurtster

kurtster Avatar

Location: drifting
Gender: Male


Posted: Jul 5, 2017 - 6:43pm

Big day tomorrow.  4.30 wake up.  7 AM down at the Mothership to hear what my transplant onc has to say about my future.  Then at 1.30 PM to another system hospital cross town to meet with the new radiation onc and see what he wants to do.  Its also trash day, maybe, cuz of the holiday and big laundry day.  We have both been sicker than we have been in a long time battling an upper respiratory thing.  The TV was off from Saturday until yesterday evening to watch the Tribe get beat 1-0 by SD.  Hopefully, we'll both have enough energy to get it all done.
 
P had to stop taking her anti depressant cuz of an interaction with the antibiotic so its been real fun, not.  
We're both thoroughly whupped already just thinking about tomorrow.

And so it goes ...

miamizsun

miamizsun Avatar

Location: (3261.3 Miles SE of RP)
Gender: Male


Posted: Jul 4, 2017 - 6:43am

thanks    {#Cheers}    {#Music}


NoEnzLefttoSplit

NoEnzLefttoSplit Avatar

Gender: Male


Posted: Jul 4, 2017 - 12:50am

 kurtster wrote:

4 July, 2017

 

CLICKY

 My playground of upcoming attractions.  List keeps growing.  Not everything will be good enough to make the cut.  I will consider requests ...  You can play around with the list by clicking on the column headers.

 y'all

 


 nice one Kurt.
kurtster

kurtster Avatar

Location: drifting
Gender: Male


Posted: Jul 4, 2017 - 12:23am

4 July, 2017

The End Game

Over 17 years ago I found this place.  The music brought me here.  The people keep me here.  Long, long ago I wrote about this place like being a virtual Atlantis.  One of the most diverse group of people imaginable with one common interest.  Music.  The talents, knowledge and skills you all have have proved to be what I needed to end up doing what I always wanted to do.  That is getting the most out of my music since making mixtapes has been a hobby for over 45 years.  I’ve never been satisfied with the quality of my rips over the years, falling victim to the there must be a better way with better stuff. 

Being a young and dumb and pretty broke 20 something y/o budding audiophile, I got lucky and figured out the better the source the less it matter what played it.  I have since then put all my hard earned dough into the TT / cartridge end first.  I took as good of care of my records as I could basically using them for tape masters so they were basically once or twice played.  At least I’ve done one thing right in my life and its finally making all the effort the reward.

10 years ago in February I took a leap of faith and traveled to Portland to meet my first RPeep, hippie, who I found was doing what I wanted to do and based upon a remark about what I noticed about what he did to a song got him to say how would you like to learn how to do this ?  He got me started and headed in the right direction and with a follow up visit a year or so later, got straightened out on what I was doing wrong and what I was doing right.  He kept challenging me and pushing to get the best out of me.  Since that time I’ve had the immense pleasure of meeting many more of y’all.

Ripping vinyl has always been the goal, but I had to work with CD’s and crappy mp3’s from …  You all have been most kind in enduring my growing pains and I finally did manage to come up with a sound that was pretty good.  I’ve learned that less is more because I pushed things to the limits.  I have redone about a dozen or so key songs over and over again each time I figured out something new.

Then I got this shit called cancer.  We all know the back story.  So with the clock ticking, it was time to define how I would spend my time and energy in my remaining years.  Two years ago I decided to finally go all in to ripping.  I have known that the one thing holding me back was a record cleaning machine.  I’ve wanted one since I first learned about them reading Audiophile back in the 90’s.  It was the only way to get rid of as many pops and ticks without having a very sophisticated music studio.  But with 10 years of practicing with several studios, I can do that, too.  Long story short, I’ll put the long story over in my quiet vinyl thread, I put it all together, including finally deciding on a new preamp since my original one was dying.  We had nirvana for a short couple of months.  Over at discogs, I started a ripping vinyl forum group and have been comparing notes with people who are hobbyists.  So we got into the tonearm damping thing and how much of an affect it has on things.  It was only $15 and for another $34 they had a half pound record weight.  It has turned out to be the final tweak.  Its so impressive that I have figured out that I have to re rip all my stuff all over again.

But I don’t want to keep it to myself.  I don’t want to work so hard and be the only one that gets the smiles.  I don’t want this stuff to disappear into a dumpster when I’m gone.  We know where this headed, so no need to discuss the obvious.  If you like what you hear, there is a way to subscribe so I don’t have to draw attention to this by posting every time there is something new.  No more songs, just sides.  This will be my only reference to any of this in this thread and it will have a shelf life.

So I’ve put up some sides that I have done before many times and many of you have been patiently indulging them despite their lacking.  Grab these and delete the others.  DSOTM, BF, DG, JG and a mystery album I don’t dare identify.  You’ll have to figure it out yourself.  I have done nothing to these other than take out noise, clicks, pops and crackle and level volumes manually, by pencil tool and mouse.  No remastering, no adding.  There are some clicks in the mystery album I just left there because they don’t really bother me much since I’m used to listening to vinyl again.  What I am hearing is what I have been trying to accomplish when I tried to remaster CD’s to sound like vinyl.  When vinyl is good, its sofa king good.  Its all about who did the mastering of the source, not the medium, so much.

This is what I plan to do with the remaining time I have on this planet and leave something behind that lasts longer than I do.  Its how I want to say thank you for everything this place and people are.  For DSOTM, I strongly recommend pouring a brandy and or rolling a doob and sitting with your eyes closed in a dark room.  It sounded brand new again to me after all these years.  A candle is ok if you're afraid of the dark.  The JG side you can actually understand most of the words Joe sings.  I swear Cobain had Joe as a model for his singing style ...  Or you may find what this stuff sounds like is not to your liking and that's ok too.  Music is one of the most subjective things there is in life.  I'm still gonna keep doing it regardless, cuz it works for me and keeps me busy.

 

CLICKY

 My playground of upcoming attractions.  List keeps growing.  Not everything will be good enough to make the cut.  I will consider requests ...  You can play around with the list by clicking on the column headers.

 y'all

 

 

 




triskele

triskele Avatar

Location: The Dragons' Roost


Posted: Jul 1, 2017 - 4:42am

I don't come to RP often, but when I do, I check out this thread.  Glad your marrow test was clean.  
kurtster

kurtster Avatar

Location: drifting
Gender: Male


Posted: Jun 30, 2017 - 6:56pm

 spammer wrote:
Give me a call when you feel like it.Indians-Yankees 4 game series first week of August.
I'll get the tickets and Uber  {#Bananajam}
If you get the dogs and doober.

Sittin' in the sun
Vapin' on the sly
Chillin' with the game
And getting high high high

 
Make it so !  Plenty of room.  I already got my part covered.  {#Mrgreen}

Don't forget to bring a nice big empty hard drive ...
kurtster

kurtster Avatar

Location: drifting
Gender: Male


Posted: Jun 30, 2017 - 6:49pm

 kcar wrote:

Geez! You have enough going on that you shouldn't have to wade through staffing and protocol changes at a clinic and wrestle with what kind of radiation treatment you should be receiving. It's great that you were able to hook up with the doctor who treated you earlier. I imagine that having an oncologist who knows you as a person and not just as a case makes a big difference when it comes to a patient's trust and motivation. My sister-in-law switched oncologists during treatment after feeling that the first one was overwhelmed, not keeping with his patients and dealing with some sort of personal crisis.

Good luck, kurtster! Enjoy the hell out of the weekend!  

 

12 July 2009

We are all survivors of something when you get down to it.  
"Reality is a jagged high..."  True story and lucidity is highly underrated.
Getting older is a source of inspiration and brand new emotions, especially as we live and friends pass.
   

Me, from somewhere else.

14 February 2009

Happy Valentine's Day y'all and get it while you can...  Keep that glass half full, but don't be afraid to sip along the way, there will always be something to refresh it.

Me.

Your thoughts about your SIL triggered a whole train of thought.  What she did takes guts.  I went looking back into my journals about this very subject.  Being comfortable with the people treating you.  They may be good at what they do, but you all have to get along; fighting cancer is truly a team sport and the patient has an equal part of importance as all the rest of the moving parts (provided the patient has demonstrated that they are involved and just as committed as the rest of the team.  Then there are people like my sister which I will get to someday)  

But in this journal, I tell my story about picking my doctors.  The doc mentioned at the end who wakes me up to tell me my kidneys are failing is now my primary onc.  We get each other and trust each other and the rest of the team who I have come to know well over the years.

Yeah, I know what changes the place has been going through and these little things shouldn't be happening, but they are.  So right now, I'm very hands on and making sure that things get done.  I can't wait for the system changes to be digested.  Yesterday afternoon, I got a call from the transplant doc's office that I called the day before.  They wanted to make an appointment for me.  My home shop did get it done, eventually.  But I already did it myself.  

Patients with more than routine medical problems really need an advocate to push or pull everyone in the same direction and / or to make sure no stone goes unturned.  Both my wife and I have become advocates in essence along the way and are helping more than a couple of people sadly, to help them get started in the right direction and prepare them for the things they need to know and ask.  In all the discussion of the radiation, I forgot to ask the doc what the half lives of the radiations are and how long does it actually last inside me.  So with all I know, I can't ignore the short comings of a system and possibly slip through the cracks.  I ain't gonna raise of fuss about it though.  I'm just gonna step up and get er done.

The two quotes of mine above are some things I stumbled on while looking through my journals to find the one I linked.  I have one more journal to relight up because it is rather poignant and the last comment was from our departed friend Cynaera.  

Glad that Bill took the time to archive the journals.  I do have a lot of drafts stored somewhere for a book I'll prolly never write, but seeing the comments from past and still present peeps has been uplifting.  Synergy, the total is greater than the sum of the parts.

You have a rocking weekend, too.  This catharsis will go along way to make mine better.

 y'all




spammer

spammer Avatar

Location: Bokey's Basement(he doesn't feed us)


Posted: Jun 30, 2017 - 5:58pm

Give me a call when you feel like it.Indians-Yankees 4 game series first week of August.
I'll get the tickets and Uber  {#Bananajam}
If you get the dogs and doober.

Sittin' in the sun
Vapin' on the sly
Chillin' with the game
And getting high high high


kcar

kcar Avatar



Posted: Jun 30, 2017 - 2:30pm

 kurtster wrote:

No worries there.  I got cancer before he did.  It was a weird experience where I got to there before he did and stole a lot of his thunder.  Sort of a generational shift.  No, mine is mine.  I know that completely.  It became strange to go to a facility he went to where he didn't do well.  I thought nope, I'll go somewhere else.  The regular doc who ran the place and the equipment was on maternity leave and another was filling in for her.  During the consult he was called out to attend to some issues two times.  Old equipment, not the person familiar with it.  Nope, not happening.  That and they were making plans to go ahead without telling me what kind of radiation they were going to use.  I've already decided no electron X Rays.  The other choice is Photon where they say they can control how deep it goes.  X Rays go all the way through and what ever is in their path is collateral damage.  The target is behind my right ear just below the occipital lobe.  I want the Proton which is a newer, third kind or we ain't doing it.  (and I just discovered that CCF does not have it, but the other hospital here in town at CWRU does) I was pretty sure the doc said photon not proton.  Now I'm confused and don't know WTF I'm a gonna do.   

So I went in for my shot and to see what was going on with my appointments.  They had made the radiation apt.at my requested location while I was driving in.  I called on Monday.  I had a pow wow with the ladies and we figured out that there was no consult at the Mothership scheduled yet.  This is where I grabbed the bull by the horns, went over everyone's heads and called and made my own appointment when I got home with the doc who did my transplant 8 years ago.  I see him in the morning before I meet the new radiology guy later that afternoon.  No one is talking a port yet so that bodes well.

My onc shop that I have been going to since day one has gone through a tremendous amount of change in the past six months.  A large turnover of the nurses just happened and with all kinds of new protocols to comply with, its getting crazier.  They are understaffed and turning away new patients and making them go downtown to the Mothership for treatment.  I do my best to make sure that I do not add to the confusion and show them that I understand emergencies and priorities.  I will just sit quietly until they get caught up.  They already know that unless I have work clothes on, I'm in no hurry.  It is what it is and I have to do a little more to make sure that my stuff gets done right and lighten their load at the same time.

That's it for now.  July 6th is the next big day when I see the docs and figure out what we're gonna do next.

Thanks all for the thoughts and words of encouragement.  {#Cheers}  {#War}

 


Geez! You have enough going on that you shouldn't have to wade through staffing and protocol changes at a clinic and wrestle with what kind of radiation treatment you should be receiving. It's great that you were able to hook up with the doctor who treated you earlier. I imagine that having an oncologist who knows you as a person and not just as a case makes a big difference when it comes to a patient's trust and motivation. My sister-in-law switched oncologists during treatment after feeling that the first one was overwhelmed, not keeping with his patients and dealing with some sort of personal crisis.

Good luck, kurtster! Enjoy the hell out of the weekend!  
SeriousLee

SeriousLee Avatar

Location: Dans l'milieu d'deux milles livres


Posted: Jun 30, 2017 - 9:56am

Great news that your marrow is clean. {#Cheers}
BlueHeronDruid

BlueHeronDruid Avatar

Location: planting flowers


Posted: Jun 29, 2017 - 1:06am

 kurtster wrote:

<snip>
Thanks all for the thoughts and words of encouragement.  {#Cheers}  {#War}

 
Good. Keep the mitts on.


kurtster

kurtster Avatar

Location: drifting
Gender: Male


Posted: Jun 29, 2017 - 12:14am

 BlueHeronDruid wrote:

I know it's hard to not project, particularly when one's life is at stake.

Quick note about staying in your own reality: first person I met at support group was a women who'd had the same initial diagnosis as me (stage 1 infiltrating ductal carcinoma, node negative). IOW, 95% recovery rate. Except that she was in full metastasis. She saw the shocked look at my face, took my hands, and said, "This isn't your story. This is my story."

I'm still telling this story 23 years later because it was that powerful for me. Stay within your own experience. Your father's story was just that, his story. Not yours.

Wonderful news about the marrow; hopefully a localized recurrence indeed.

 
No worries there.  I got cancer before he did.  It was a weird experience where I got to there before he did and stole a lot of his thunder.  Sort of a generational shift.  No, mine is mine.  I know that completely.  It became strange to go to a facility he went to where he didn't do well.  I thought nope, I'll go somewhere else.  The regular doc who ran the place and the equipment was on maternity leave and another was filling in for her.  During the consult he was called out to attend to some issues two times.  Old equipment, not the person familiar with it.  Nope, not happening.  That and they were making plans to go ahead without telling me what kind of radiation they were going to use.  I've already decided no electron X Rays.  The other choice is Photon where they say they can control how deep it goes.  X Rays go all the way through and what ever is in their path is collateral damage.  The target is behind my right ear just below the occipital lobe.  I want the Proton which is a newer, third kind or we ain't doing it.  (and I just discovered that CCF does not have it, but the other hospital here in town at CWRU does) I was pretty sure the doc said photon not proton.  Now I'm confused and don't know WTF I'm a gonna do.   

So I went in for my shot and to see what was going on with my appointments.  They had made the radiation apt.at my requested location while I was driving in.  I called on Monday.  I had a pow wow with the ladies and we figured out that there was no consult at the Mothership scheduled yet.  This is where I grabbed the bull by the horns, went over everyone's heads and called and made my own appointment when I got home with the doc who did my transplant 8 years ago.  I see him in the morning before I meet the new radiology guy later that afternoon.  No one is talking a port yet so that bodes well.

My onc shop that I have been going to since day one has gone through a tremendous amount of change in the past six months.  A large turnover of the nurses just happened and with all kinds of new protocols to comply with, its getting crazier.  They are understaffed and turning away new patients and making them go downtown to the Mothership for treatment.  I do my best to make sure that I do not add to the confusion and show them that I understand emergencies and priorities.  I will just sit quietly until they get caught up.  They already know that unless I have work clothes on, I'm in no hurry.  It is what it is and I have to do a little more to make sure that my stuff gets done right and lighten their load at the same time.

That's it for now.  July 6th is the next big day when I see the docs and figure out what we're gonna do next.

Thanks all for the thoughts and words of encouragement.  {#Cheers}  {#War}


Rod

Rod Avatar

Gender: Male


Posted: Jun 28, 2017 - 5:47pm

Hang in there Kurtster, we are all pulling for you! 
kcar

kcar Avatar



Posted: Jun 28, 2017 - 5:17pm

 BlueHeronDruid wrote:

I know it's hard to not project, particularly when one's life is at stake.

Quick note about staying in your own reality: first person I met at support group was a women who'd had the same initial diagnosis as me (stage 1 infiltrating ductal carcinoma, node negative). IOW, 95% recovery rate. Except that she was in full metastasis. She saw the shocked look at my face, took my hands, and said, "This isn't your story. This is my story."

I'm still telling this story 23 years later because it was that powerful for me. Stay within your own experience. Your father's story was just that, his story. Not yours.

Wonderful news about the marrow; hopefully a localized recurrence indeed.

 


We're all rooting hard for you, Kurt. I can only imagine the memories echoing in your head about your dad's illness as you go back to the place where he had radiation treatments.  Keep posting. We want to know how you're doing and how you're feeling. 
BlueHeronDruid

BlueHeronDruid Avatar

Location: planting flowers


Posted: Jun 28, 2017 - 4:31pm

 kurtster wrote:

25 June 2017  7.00 AM

So it’s a new day.  Slept hard.  I reread a journal I wrote 4 years ago about my Dad’s experience with radiation before I started writing the above last night.  It wasn’t pretty.  It was about radiation vs hospice.  He had his radiation at the same place I am scheduled to do mine and I am having even more second thoughts about doing it, at least at that particular place.  



 
I know it's hard to not project, particularly when one's life is at stake.

Quick note about staying in your own reality: first person I met at support group was a women who'd had the same initial diagnosis as me (stage 1 infiltrating ductal carcinoma, node negative). IOW, 95% recovery rate. Except that she was in full metastasis. She saw the shocked look at my face, took my hands, and said, "This isn't your story. This is my story."

I'm still telling this story 23 years later because it was that powerful for me. Stay within your own experience. Your father's story was just that, his story. Not yours.

Wonderful news about the marrow; hopefully a localized recurrence indeed.
cc_rider

cc_rider Avatar

Location: Bastrop
Gender: Male


Posted: Jun 28, 2017 - 3:52pm

Dang, that's a rough road. Hang in there. Thank you for sharing your tribulations, helps keep our petty troubles in perspective.
c.
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