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.

No doubt not what you like to hear...but keep up the good attitude.

 kcar wrote: 
I'll get to my sister down the road.  Looks like I won't be seeing her this trip.  Might, but don't want to ...

So here's how things are shaping up.  This thing is both incurable and deadly as hell.  Didn't formally know (but figured it was anyway) about the incurable part until just two years ago when I had to do some digging to deal with my student loans.  The deadly as hell part I already knew.

I have a PET scan on Friday to see what lights up and meet with the big guy on the following Wednesday to see what we're gonna do and why.  So far it never made it into any organs other than lymph nodes and my bone marrow.  Bone marrow is the destination of blood cancers and a vital organ in itself, hence Stage IV even though we caught it very early initially. There is the possibility of oral treatment instead of chemo.  Regardless, this stuff is just gonna keep coming back until it finally gets me.  Again, only 1 out of 5 make it past 5 years.  I'm 8 years out, sorta, depends on how you keep score.

So it comes down to where it is right now and what can I expect from what treatments and how my present physical health figures in all of this which is pretty well shot already.  Will the oral stuff allow me to work or be with the public and not fear every sneeze I hear or runny nose I see ?  We already know the answer with chemo; its no.

 y'all and much obliged ...

 kurtster wrote: 
fellow goofy footer wishing you all the best

hang in there buddy 

kurtster, I'm so sorry you have to deal with this bulls—- again. I learned about your fight with NHL only recently and I was shocked that it's come back after such a long hiatus. I hope that treatments have progressed enough during that quiet spell that you can kick this in the balls with ease. 

We're all pulling for you. You and I have very different political opinions but that doesn't mean squat. You're a great guy and I've enjoyed reading about your life's journey, cancer and all. Keep us posted about your progress.     

Oh, and your sister needs some quiet time in a padded cell. Just sayin'. 

I am grateful that the traumas of my life and family relationships are not on the same order of magnitude/chaos level as yours.

Hang in there, bro. Sounds like you have your priorities straight.

 

keep fighting!

 kurtster wrote: 
Thanks for posting, Kurt.

So once upon a time we had this thing called The Journals here.  They and you fellow RPeeps were a huge part of my support system the first time around with this shit that lives inside of me.

As we no longer have The Journals, I'll just start this thread to chronicle what's going to unfold.  I hope that its presence on the RAFT from time to time does not upset or offend anyone.  This ain't about sympathy or anything like that.  Its catharsis for me and sharing for those dealing with similar things.  The sharing is important.  I've already gone and dug up some of my old journals and printed them out for the social worker at my oncology shop to use as she sees fit and given them to others for their amusement and maybe something uplifting in such a dark matter.

I'll also share a lot of observations on the current state of the health care experience.  There will be nothing political about these particular observations.  It will be from the Patient Advocate point of view.  There have been unbelievable changes since my last round 8 years ago and with what I have seen and been through in the past two or three weeks has been eye opening and profound just from an organizational stand point.  One observation was being asked a lot about where I was from by all levels of care.  Its part of the normal routine of courtesies and introductions of who people are and what they do there in the surgical side.  What was revealing was that I was the rare local as opposed to from folks other cities, states or for that matter, country.  Its the big time at The Mothership ... 

I was in the process of becoming a mentor in Scott Hamilton's Fourth Angel program when this stuff popped back up.  Already doing this kinda thing for a friend of peep.  Its a two way street.  He's already lifted me up when this restarted.

(its late, got fresh coffee, I'm also in the process in the process of reimaging the musik puter and moving files and getting ready to do it the smart way instead of making 101 mistakes and calling myself a DF)

So ok, yippee skippee as hippie would say.  Jr is not a problem currently, he seems to be on his way to putting it back together.  But my sister is.  For those of you who were around the first time, she's the one who said I wasn't taking my cancer seriously and caused some serious family problems.  She now also has a similar, yet lighter weight NHL and I hooked her up at my shop with her coming up from Dallas and staying with our 90 year old Mother.  The only reason I tried to get her to come up here was to prevent her from making our Mom travel to Dallas to take care of her and try an convince her to even move there.

So I pull all the levers and get her plugged in.  Turns out she has a deathwish, has scoured the Internet and is convinced that she is gonna die and should be headed to Oregon instead of Cleveland.  Keeping it simple, she shows up for her first bag, OD'ing on a myriad of painkillers that she tells no one about.  The first thing out of her mouth is a question about hospice and gets torqued because suddenly she is being asked what day and year is this, who is POTUS when her BP goes to like 50 over 30.  P and my Mom were present for this event. I find out that she is regarded as the worst patient they have ever encountered.  I share it with P.  HIPAA anyone ?  Yes, in a heated moment with P where my sister is pushing P for anything she may know about her, she tells her to STFU and that she is the worst patient they ...  My sister flies off on her broom and makes a big scene at the shop and things become estranged with me because I blew privileged insight shall we say.  I haven't spoken to my sister since around Thanksgiving.  She is doing well inspite of herself, she just returned to town for additional treatment and her first PET after her first round.  All's I'm hearing from Texas is that she's not gonna make it, she's full of it, its everywhere ... her doctor's down there say ...  Turns out her scan looks pretty damn good.  I have once again robbed her of her deathwish and am being punished for it.  And now we are both going to be treated at the same time in the same place.  
I'm in no hurry or volunteering to die.  I cannot be with someone who is trying to die.

Twilight Zone part ...

Its very rare to have siblings with NHL and no prior history.  My sister and I and our doctor, were all born in the same hospital in Berkeley, Alta Bates for those nearby.  We all end up together in Cleveburg decades later for the same reason.  Someone with a weird sense of humor has twisted the strings of fate together in a strange way.

So there we have it, most of the moving parts.  

Being an old surfer from the longboard era that I am ... BANZAI  !!! 

goofyfoots rule ...