BlueHeronDruid wrote:
 
Whoo hoo for all of you!!

 kurtster wrote: 

 kurtster wrote: 
BlueHeronDruid wrote:  
  

 kurtster wrote: 
Currently clocking 25 years. Catch me up.

So the 10th anniversary of my transplant or my new 10th birthday came and went and I could barely think, let alone save any thoughts about it since so much has been going on as noted in the posts below.  So now seemed to be a good idea to dust off this thread and try and get back to what is really important or should be important.

I'll consider this a place holder for now.

It was on April 24, 2009 that they brought me back from the dead and put my stem cells back into me to give me a new life, in what ever way it would turn out to be.  10 years for my stuff is rather remarkable as (back then) only 20% survived after 5 years.  It is still incurable, but there have been so many advances in these what is now a short 10 years in the big picture.  The name of the game is still to be alive so you can benefit from the next advancement, same as with any other cancer or disease.  I began my third overtime last April as longevity with cancer is still only staged out for 5 years from the initial diagnosis.  After that it's anyone's guess.  more to come.

 kcar wrote:  
I used to be the pro.  Among the many things I've done was run a full service gas station after parking the coffee truck for good, in downtown Cleveland in the 80's and serviced a fleet of 150 K cars for the Thrifty Car rental office in town.  My peak effort back in the day was changing a piston on my small block 350 chevy engine from the bottom of a 1 ton C-30 chevy coffee truck, in 45 minutes.  That was pulling it in the bay, taking off the oil pan, loosening the bearings on the crank, pulling it out and shoving another one back in, putting the pan back on, oil in and back it out of the bay.  and the piston ran fine for a couple more years. When I ran a plaza on the Ohio Turnpike in the late 80's, I changed truck tires on tractor trailers, myself.  With hand tools.  Breaking down rims and replacing tires on the rims.  More often than not, we had to use staring fluid to get the side walls to pop onto the rim.  We did that by spraying the tire full of it and then a trail about 10 feet on the ground and lighting it and running away causing an explosion to inflate the tire and get the bead to seal.  It was both dangerous and illegal.  We had to make sure than no staties were nearby.  We could get arrested if caught.  But there was no other way back then.  I've got lot's of stories to tell about things no one cares about or have even heard of for that matter.  I just happen to be an optician right now as I have been known to say. 

After I got sick 10 years ago the first time I had a place where they would do my brakes with my parts for $75 an axle.  They since have gone into the ether.  I'll be gotdamned if I'm paying someone $300 to do the job.  The Honda dealer wanted $400.  The parts are $100.  I spent another $125 for a half inch impact so I wouldn't shoot my load getting the wheels off.  Disc brakes are one of the simplest things in the world to do.  I'm broke, so I had to do it.  I'm doing things again that I had long ago thought that I was no longer physically able to do.  The plumbing.  Just put a new sink and faucet in a bathroom vanity and had to reconfigure the PVC / ABS drain system and replace the shut off valves.  Never done either before.  Cost $175 in nice parts and tools.  But I got that back by putting equity into my place for later on.  Cannot even begin to wonder how much that would cost if I paid a plumber to do that.  Actually I do know.  About $750.    Got the leaking kitchen faucet to replace tomorrow and the shut off valves are blown there, too.  That's what I'll do when I get back from my oncologist in the morning. The car exhausts were only $350 each.  A bargain.  One needed a cat converter and the other needed a new flex pipe.  They both needed new mufflers too. Went back down in the hood to a place that still does old fashioned tube bending and all the local used car dealers go to get there cars exhausts replaced.  Two hour ride, first come first served, but worth it.  Midas would'a been $1k each.  Hey, it is what it is.  I'm not complaining.  I'm grateful that I know how to R & R stuff and am finding ways to physically still do these things.  I will have to work the rest of my life.  I did have a plan before I got sick.  I just got my BBA  one year before and was going to get my earnings up enough where social security would have been enough to live comfortably and work be an option.  Instead I got sick and lost my peak earning years.  So I have to do what I have to do.  I have to plan things ahead, engage in preventive maintenance and try to get the most quality and durable bang for my buck.  Our home is paid for and so are both cars.  One is nice the other is not so nice.  My student loans were forgiven last November.  I just played the hand dealt me and then played by the rules to the best of my ability.  I understand the art of cash flow and use it to the best of my ability to make it through all of these hoops.  I may be broke but my credit rating is around 750 and climbing.  I was going to write about my understanding of cash flow the other day in the thread that Scott lit up about lessons learned about money, but thought better of it.  thought it might be taken the wrong way.  I have hustled all of my life and by the looks of things it will continue to the end.  Again, not whining or complaining, just observing and counting my blessings.  So many people have it so much tougher than I do.  I just try to lead by example and do what I say others should do if I were them.  I may not always live up to that, but I haven't quit trying.

  Thanks for listening.

Kcar wrote back ...

Moved here from that other thread ... because this is where this conversation belongs

 kcar wrote:  
Thanks.  The doc is done, that was last week.  The interview was the week before.  I'm waiting for a decision if I made it past the first round.  That will come by the end of this week.  The broccoli is doing just fine while I wait.  I must say that sitting around the shack without broccoli leaves my mood for doing anything with music to be rather lacking.  That and I'm waiting for a tool and implement of improvement for my turntable to arrive from Hong Kong with no tracking available so all ripping has been at full stop for a couple of weeks now.   If it wasn't for some terrible plumbing problems to deal with the past couple of weeks and getting so sick I almost checked in to a hospital Friday night, I would be bored out my ying yang.  So I'm doing fine keeping busy the hard way.  Oh and 4 weeks earlier a front caliper let loose on the freeway going into work one morning because I forgot to tighten the bracket bolts that held it in place when I changed the pads and rotor.  Originally I was going to cheap out and just do one side because the pads had failed, but stupidly did the one I didn't have to because, you know, you always have to both brakes on the same axle at the same time regardless.  I was too tired by the time I tore the second side apart and forgot to do more than hand tighten the bracket bolts.  I did do a road test though and it felt good.  The next morning on the way to work I heard a thump and then another one and a new vibration.  The thumps were the bolts flying out bouncing in the wheel well at 75 mph. That was fun with hand tools filing out holes in the knuckle so I could get the bracket lined up with the new caliper and the bolts to line up.  I bent the knuckle bracket on the strut mount when stopping a couple of times.  The caliper dropped down on the wheel causing immediate lock up.  Did that 4 more times before beaching it in the driveway.   Somewhere in there I also had to put new exhaust systems on both cars.  Oh and the Tribe is doing ok and there has been the WSL Corona pro from Bali to watch for 6 hours at a pop when the conditions are good enough for heats.  It all keeps me from watching too much of FNC, going back to on topic so as not to be a total thread jack.  This is how I spent the 10th anniversary of my stem cell transplant pushing my way on to 67 years circling the sun.  I hadn't picked up a wrench in all that time until now either, for lack of energy, not for no how.  Oh and the wife went down for major emergency surgery in spite of having double pneumonia because she was going septic from a blockage.  They had her colon cut out on the table cleaning it up and put it back in place just the month before everything else listed above.  That is when the brakes started to fail ...

But worry not, I am still coco for kookoo puffs ... and I ♥ prednisone ... I'll be even more fun to be around in a couple of days ...  bwahahaha ...

 kurtster wrote:
  Good wishes for you and yours, Kurt.

 kurtster wrote: 
 yeah just keep breathing   

 aflanigan wrote: 
  thanks, buddy.  :exhales:

 kurtster wrote: 
Thanks for checking in. Good times, bad times, you know we've had our share . . . 

Patty arrived home safe and sound last night, I'm so happy to say.  She said that she figured that she has been home a total of 18 days since this all jumped off back in October.  Jennifer is stable and missing her Mom, but Mom is back home where she belongs ... for now.

I just told her about our friend Jimmy, who I mentioned was crushed by a tree last week.  I was not allowed to tell her about it until after she got home for obvious reasons.  He is in a very bad way.  The only good news is that he was working for a paycheck when this happened and it will be an industrial accident and the expenses will or should be covered.  The story goes that he was one of 4 or 5 cutting down trees and as this one went down, it hit another tree and bounced backwards and landed on him.  It was so big that they had to cut it up in order to get him out from under it.  He was lifeflighted to Greenville, NC.  The list of injuries is extensive.  Fractured neck, back, arm, leg and both his lungs were collapsed.  Kept in a coma as they put rods and pins to stabilize him enough to prevent any paralysis from things shifting.  They just took out his spleen in the past 24 hours.  He's now awake, but intubated so communication is extremely difficult.  Sissy, his significant other is doing her best to keep her mind straight as all of this goes down.

More than likely Patty will be headed down south when it appears that he will be able to come home and help them through their time of need and help out during the transition to whatever he ends up being.  We are family to each other and have been there for each other over the course of many years through injuries and sicknesses.  I will try to enjoy the time I have with her for now and help her decompress and debrief her from the trip out west.  And then, well, its whatever it takes, again.

A story must be told now.  I first met Jimmy about 25 or so years ago, maybe longer, through one of my friends, the one I've been doing the Cleveland St Patrick's Day Parade with the past 20 or so years. Neither Jimmy or I will be doing the parade this year.   As I got to know him, he mentioned his father one day and where he worked.  It turns out that his dad was a customer of mine way back in the 70's on a route I had while driving the old coffee truck when I was in my 20's.  I had known his dad for some 20 years before I even met Jimmy.  We were all together and put up Jimmy and Sissy when his father was dying from a disease where iron builds up in the blood.  Jimmy inherited that disease and is dealing with it now. He was being treated at the Cle Clinic right around the same time as my cancer was going on and we were dealing with Patty's car accident aftermath.  There are so many other stories to tell about us all, but the point is that we so often hear someone say it's a small world and keeps getting smaller ...  This is just one example of that.  degrees of separation ... paying it forward ...  being nice because you can ...

You just never know how small the world is or can be ...

.
   

Sounds like you're all a strong batch of humans. Hang in there and Godspeed.

 kurtster wrote: 

  hang in there buddy (and take black's advice about cleaning the place up  )

Best of luck, and get that place cleaned!

Fascinating, infuriating, and ultimately reassuring. I hope the 3 of you can experience some peace and forget this for a while.

 kurtster wrote: 

21 February 2018

There's been no updates because things have been so incredibly complex and there was no reliable information to share until now.  It changed almost daily.

She’s comin’ home.  My honey bunny has been out west basically since October taking care of her daughter Jennifer, who is dealing with advanced invasive melanoma.  She’s been back twice in between, I think, not really sure anymore.  Once was for a couple of weeks and the other was for 4 days, IIRC.  The last trip started in early December when we got the message that Jennifer is gravely ill with tumors in her brain and the frontal lobe to be precise that if not dealt with immediately, would simply kill her.

The first trip out was when J was initially hospitalized because her blood sugar was averaging 500 and all attention to her cancer stopped dead in their tracks.  Shortly before this, she just had undergone the Gamma Knife to deal with 6 or so lesions in her brain and that knocked the snot out of her all by itself.  As mentioned in my last post, I think ...

There were simply too many 3^rd world medical malpractice assaults on Jennifer to mention that happened to her that led to her brain surgery in the once Golden State of California.  Filthy understaffed hospitals, incompetent doctors, an unnecessary surgery that opened her stomach without a second opinion or review and well meaning but uninformed caregivers who reinforced the old axiom of the road to hell is paved with good intentions.  These caregivers, J’s father and an exgirlfriend of his who claimed to know all about cancer because she took friends to the doctors offices for treatments, etc. almost killed her with their personal biases when J became unable to eat anything, let alone keep it down.  They kept saying that she doesn’t want to eat, its just her stubborn nature.  Fortunately, Patty was there and  realized that J could not eat and pushed and pushed to get her scoped where they found that the bottom of her esophagus was almost closed due to a growth.  As a last ditch effort, they put in a stint to open it up and keep it open.  J had not eaten for almost two months and was living on IV nourishment, headed towards a feeding tube.  Organs were beginning to shut down.  Now she is eating whole food again since the stint was put in.  So with that accomplished Patty came home, and was here for only 4 days when we got the call.

When Patty went back out in December our only hope was that she would get there before her brain surgery to at least say hi to her daughter before she underwent the brain surgery that she was likely not to survive.  Things happened that fast.  We were in need of a Christmas miracle.  It now appears that we got that.  As it turns out there was only one doctor available in SoCal, Dr Mark Linskey, that would even touch her and he basically dropped what he was doing and took her on after the UCI neurology department review of her case.  While he was in, he found additional lesions and took them out as well.  She made it through but lost the use of her left side of her body and the neurosurgeon said that it was unlikely that she would regain the use of her left arm and leg anytime soon, if at all.  An occupational therapy program was figured out and Patty being at J’s bedside kept on doing all the exercises in between the daily hour long or so visits and J has regained limited functions and is even able to walk again and hold things with her hand.  She can’t raise her arm but if raised she can hold it up in place and some autonomic reflexes are working now. 

Sidebar. We now know that the brain is capable of rewiring itself or rerouting pathways to overcome areas that are no longer functioning properly and I am convinced that because Patty was there working constantly to keep Jennifer moving and exercising between these visits, it enabled the brain to do a much better job of repairing itself than if there were much more limited exercises that only happened during the brief daily therapy sessions.  I don’t know that for sure, but we will find out about that when P gets back and sees her own neurosurgeon for follow up on her own back surgery.    Because P was out there for as long as it takes, she had to call her neuro doc here and cancel a standing appointment.  Evidently she was on speaker phone and her doc just happened to be nearby during the call and when P mentioned Linskey by name her doc turned his head so to speak and said that he has heard of him and reassured her that he is about as good as it gets.

Fast forward, Linskey referred us to an oncologist, a Dr John Fruehauf, that would be able to treat J’s melanoma with state of the art care and therapy.  It turns out that our new guy knows the doctor who did J’s initial treatment and more or less spit after saying his name.  He said that there is no way in hell that J should have had chemo with her type of melanoma in the first place.  He damn near killed her.  None of the chemo used could get past the blood – brain barrier for openers.  It was the friend who claimed to know everything about cancer who said that he was “the guy” to go to for J’s treatment.  Our new oncologist did say that there is woefully little real and knowledgeable  treatment available in SoCal for melanoma, which is ironic considering the prevalence of it due to the amount of people who have it due to being in the sun so much out there.  And yes, J did the tanning bed thing and it has been determined that the use likely contributed to her melanoma.

He said that her treatment was so effed up that he would do a new PET and restage her when we got the results, which we finally got yesterday.  Much has changed, it seems to be gone from inside her brain.  He flat out said that she would have died without the brain surgery.   He won’t give her a formal stage at this point, too early.  There is still some scattered about and more new has returned to her leg which was where it all apparently started, but there is nothing life threatening at the moment.  She’s not out of the woods at all, but he is hopeful that the immunotherapy he will use should be very helpful and keep it at bay.   Can’t ask for anything more after all the stuff she went through to date.  So with all of that and much more resolution, my baby is finally coming home a week from today.  Her 2^nd ex bought her ticket for us.  Family and friends have helped out so much to allow P to make 3 round trips and spend 5 months out there.  And thanks to the peeps here who pitched in at Jennifer's fundraiser page.

I can now think of exhaling and actually know that Patty will be home soon, comfortable with the care that Jennifer is finally receiving.  P is plugged in and all news will go to her directly from the doctors, without having to rely on the ones who dropped so many balls.  She has made it clear that no one better fuck things up anymore or she will be back out there on her broom and kicking asses before asking questions.  But I can’t rest yet.  There has been no one here but me and kitteh for the past 3 months and it does look like it, too.  I gots plenty o cleaning to do so she stays when she gets back.  That and I have to battle an ice storm in the morning to go to my onc for a periodic check up, regular shot and a phlebotomy to drain some blood to dilute my red counts.  I no longer get a bag of saline to rehydrate myself afterwards because my veins are so shot.  You can take stuff out, but nothing going back in cuz I now leak too easily  internally.  Oh well, oh hell.  I’m still vertical and above ground.
      

 

ps ... I hope that no one ever gets anything that would make you need either of these doctors above, but if you do and live in LA or the OC, or nearby in SoCal, there you go.

 kurtster wrote: 
Thanks guys !  

A brief update.  They found an additional spot in her brain, its up to six now.  Don't know if its better imaging there or if its moving faster.  We'll know more tomorrow.  Some things I also found out about the site for Jennifer is that they only pay directly to providers and any unused funds will go to a trust fund for her son.