spammer wrote: 
Make it so !  Plenty of room.  I already got my part covered.  

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

 kcar wrote: 

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

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 
If you get the dogs and doober.

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

 kurtster 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!  

Great news that your marrow is clean.

 kurtster wrote: 
Good. Keep the mitts on.

 BlueHeronDruid 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.    

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

 BlueHeronDruid wrote: 


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. 

 kurtster 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.

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

 kurtster wrote: 

So glad you have health care to take you through this.  Good and warm thoughts sent your way.

 miamizsun wrote: 
As do I.

i agree with both comments below   

hang tough      

Do what you need to do to stem the evil tide of cancer. The rest will take care of itself.

thank you much for sharing K. I'm with you in this, over here in Philly!

24 June 2017  9.00 PM

Shit howdy, its nutz again.  I don’t know if I’m coming or going, just going where I’m told or know to go.  Things are moving way too fast.  Radiation is being thrown at me as if my life depends on it.  Been lot’s of thinking since the meeting with the radiation oncology team this past Tuesday.  It’s one of three options or combination of options.  An oral med still in trials, chemo and radiation.  Still haven’t got the final results of the bone marrow tap yet either.  Starting to feel as if I am being used to get billable utility for the radiation machine rather than needed treatment, now that I’ve had a few days to absorb it all.  I always swore that I would do almost anything except radiation.  Now they got me leaning.

Sidebar … what does it mean when its easier to shake a bottle of pills and hear what they sound like and feel them than to read the label to figure out what they are ?

Sure was handy to have some percocets with me when my onc said let’s do a marrow tap.  I immediately took 2 right in front of him and said alrighty then, cuz it was going to be now, unscheduled, in between patients, not let’s make an appointment for another day.  Between the local, the ‘cets and his skill, it was over with little pain and agony.  Maybe he hit a hole from previous ones, I dunno.

One thing that is sure since the return was confirmed 3 short weeks ago, my mind is moving too fast for comfort.  Music and weed ain’t working.  Xanax is now on duty to try and slow it down.  That won’t work for long though. 

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.  He came home from his last dose and was placed in a chair by the front door as was the custom in getting him home afterwards and promptly passed out, fell out of the chair and broke his hip.  Hard to say, but the thinking was that he died right then and there and fell out of the chair.  His driver hadn’t left yet and helped him to some sort of uprightness while 911 was called.  He was brought back to some level of consciousness and transported to the hospital where he passed a week and a half later.  I’m thinking I want to change the venue for the radiation.

It’s too early in a new day to be thinking this hard already.  But in 24 hours I have to make some decisions that will affect the rest of my life in ways unknown.  The struggle to resolve a vow not to ever do something vs doing it is overwhelming and making me want to go back to bed and sleep.  But I’m all slept out.

Want to know what it’s like in my head right now ?  It’s like I have at least ten songs playing all at once.  From Huey’s, I Want A New Drug to some really obscure songs by Spooky Tooth and others I just know but forget the titles.   I want it to be Monday already.  I want to have some energy to do more than just think.

As with everything else, this too shall all pass, but it sure is taking its own sweet fucking time.  And I just think that I have convinced myself to open the shrink today on All Things Must Pass.  Its been sitting for a month.  So do I start with Side 6 and work backwards saving the best for last or just say eff it and just play the damn thing.  Geez, that’s a pretty harsh thing to say about something I love so much.  Sorry, was trying to end on an upbeat note, but it just ain’t happening.

28 June 2017  6.00 AM

I never did open up ATMP.  I did rip some Michael Stanley though.  This past weekend was very dark.  Since then, I learned that my bone marrow came back clean !!!  Once again, caught this stuff early and it may be only a local occurrence.  Who knows where this crap hides for years and years and what causes it to reactivate.  I did ask for a change in venue for the radiation, which I am still reluctant to do.  I am still doubtful about treating a systemic problem with such a drastic local only procedure.  I do get that there may have been some particles left behind after the Lymphadenectomy.  But jeez, what is the risk / reward ?

I’ll go in this morning for my bi weekly shot and touch base to see what we do next.  But once again the best news possible is that my marrow is clean.  Something to build on.  Oh, and the xanax is back on the shelf and weed and music seems to be viable once more.

 

  Missed this.

you're on my mind Kurt

 black321 wrote: 
It all is what it is.  Attitude is just as important as the treatments.

I operate under the notion that self fulfilling prophecy is real.  The goal is to stay alive and be around for the next breakthrough.  Its been my plan so far.