kurtster wrote:
Good to hear, dude. Your HP has this.

Thanks for the thoughts.

I'm still getting over the emotional roller coaster of the past several weeks.  

So many thoughts.  Like surgery, chemo and or radiation, another port ?   No fear, just trepidation if that makes any sense.

None of that is going to happen now, thankfully, but these are the thoughts that go through the head when it is not your first rodeo.

Did a deep crash after getting the news and slept for almost twelve hours.

Picking up the pieces now and going for another reset.

This getting older stuff ain't for the faint of heart.

Yippee ki yo ki-yay and away we go, again.

 kurtster wrote:

Glad to hear you're still chugging and the chips are falling your way! 

 kurtster wrote: Good news is good news!

 kurtster wrote:

glad to hear it 

 kurtster wrote:

Had the CT last Friday and it's been a long week waiting for the results.  Negative for cancer.  Yay ! 

Usually get the results in two days max so it did have me wondering, a lot.  Doesn't explain the masses or anything else currently happening but the big one is off the table.

I'll be talking to the team Wed.  My guess is the IVIG treatment.  Still want to crawl out of my skin.  Benadryl is my new best friend.  I was hoping it would also knock me out at night to help sleep but, nope.

Whew.  Now back to just being.  One day at a time.  I can deal with that.

 kurtster wrote:

dang kurt, i can hardly imagine
thanks for sharing and take care

 kurtster wrote:

Happy 72nd bday and 16th anniversary of my diagnosis to me.  On the plus side, I got to see ZZ Top the next day in one of our great small halls.  Bonus was that it was just them standing there playing.  No props or special effects, just the three of them, playing their hearts out.

Now 1 year into my fourth overtime, some funny shit is happening, that has happened before.  Noticed it about two months ago, finally brought it to my NP's attention last week and I have a CT scheduled for this coming Friday to see what lights up.  Then we'll do a biopsy.  This will be tricky because the swollen nodes are right at where the legs fold when you sit. The entire lymph node must be removed.  No needle biopsies, need the whole thing. There is a whole bunch of stuff going through that area to increase the degree of difficulty for the surgeon in addition to just cutting into the lymphatic system and disrupting that, and then being the type of area where you cannot but help to bend, healing will be interesting.

This piled on top of the stress of dealing with my 97 mother who has gone off the deep end and simply put we are now somewhat estranged without going into it.  Just moved the last bit of the things from her house yesterday and stuffed it into the garage somehow.  Last part of the process that has been going on for several months as she has decided to sell her house and go into some sort of assisted living.

Progress has been made since my Stage IV diagnosis when at the time only 20% make it past the first 5 years.  Now I am told it has improved to 50%.  When I got diagnosed the longest survivor I heard of then was 14 years.  It is totally incurable and survivors commonly have recurrences until they pass, from it or something else.  My last was about 8 years ago.  I could backscroll to find out exactly but I'm not in the mood to do that yet.

I went and found my stash of percocet  to take when I have the inevitable bone marrow tap in my backside.  It will be my fourth and they actually hurt pretty intensely, but as I've heard, no pain, no gain ...

There, the catharsis is underway.

I've always said since I began this odyssey that I'll drain the oceans to keep that glass half full and that I will always land on my feet until I don't.

Oy Chihuahua ... 

No, it has not come back.

Just putting a time stamp on an event that I need to digest.

I saw my sister for the first time in years (7 ?)  as I was leaving my onc's office for my every other Wed shot.

She was going in for her annual check up.  If I had left 2 minutes earlier ...

 kurtster wrote: 

 kurtster wrote: 

 kcar wrote: 
Yes, indeed.  Those who go before us help to serve those that follow.  That is one of the first things I learned about the blood cancers once I truly began to get a grip on what I was involved with.  I learned that many of the great advances in chemotherapy came out of developing treatments for Leukemias and Lymphomas.  Those treatments that worked for the blood cancers were eventually tried on solid tumor patients. 

Patty's daughter's invasive melanoma just had the same kind of advance.  4 or 5 years ago, she would have been toast.  However, she bumped into the right doctor who basically is the pioneer in melanoma immunotherapy and is treating her with immunotherapy that is in its infancy.  Now a year or so after being put on the treatment she is cancer free at the moment.  He was the needle in the haystack.  Only it was he who found her.  Her case was presented to him by some other doctors to see if he might be interested in taking her on.  She languished in several hospitals in SoCal before getting lucky.  You would think that there would be a large group of oncologists dealing with melanoma in the sunny state of California.  Sadly that is not the case.

In my case, when it was time to harvest my stem cells for my transplant, the chemo I had leading up to the transplant was so brutal, Hyper-CVAD, it destroyed that part of my system that generates stem cells in the bone marrow.  The methotrexate was the big culprit there.  If not for a drug that had just come out of trials the month before, I may not have had my transplant.  Going back to some of my old journals I posted here along the way, I rediscovered what actually happened then.  Your memory gets kinda weirded out over time.  I was the second person in the country to get the OK to take this new drug.  I just happened to be using one of only four hospitals in the country authorized to administer it as well.  It worked.  I am here today as a result and the success I had with it helped others to gain approval for its use on them.  At the same time, one of the people I encountered on this journey was a woman from Canton, Ohio, just an hour and a half south of the Cleveland Clinic who had similar issues needing a transplant and was told by the doctor treating her that  there was nothing more that could be done for her and that "she needed to quickly get her affairs in order".  She refused to give up and did some digging on her own and found her own way to the CCF and underwent a successful transplant of her own.  Proximity and access had nothing to do with her success.  Her doctor was simply unaware of what was going on in the branches of medicine he was practicing in, to be kind to this doctor.  And even if you make it to the point of physically being able to have the transplant, you have to pass psychological screening to make sure that you are mentally able and stable enough to have one.  The chemo that you undertake for the 8 consecutive days prior to you having your's or a donor's stem cells or bone marrow put into you makes everything else you had before that seem like a walk in the park.

The autologous stem cell transplant (where I am my own donor) that I had was still more experimental than mainstream 10 years ago.  Now it is pretty much a mainstream thing.  And now we finally have "The Right To Try Law"   which gives even more hope and options to the terminally ill.  

It is somewhat surreal to talk about this in such a matter of fact conversational tone.  Yet, it is what it is.  As some of you here may know my wife has 23 or so years of sobriety and has sponsored many women along her journey through sobriety including heroin addicts.  Now she is sponsoring two women who are also cancer caregivers.  One of her husband and another whose brother has moved up here from Atlanta to be treated at the CCF.  She is helping these ladies and we are both helping others on their journeys with cancer.  The shit is everywhere we look.  And one of my sisters also has a much milder form of NH-Lymphoma than my own.  She is not handling her's well at all, despite having the resource of me and my wife for her battle.  She seems hell bent on dying.  She pours through the net and if she sees a symptom of something, she surely must have it and is killing / torturing our 92 yo mother in the process with her woe is me, I'm dying, I'm dying pity plays for attention.  She is actually doing rather well in spite of her self.  She happens to be arriving in town tomorrow, Saturday for her latest check up with our doctor.  Yes, my doctor is her doctor.  She almost screwed that up for me.  I got her to come up her to save my mother from being dragged to Texas to care for my sister.  My sister is so helpless (not) that she has our mother waiting on her hand and foot.  Patty and I have more or less given up on my sister because we haven't got any time to waste on people who are playing games and not interested in living anymore, so to speak.  My mother is slowly starting to see the light.

Got to call it a night.  Patty lost her oldest brother last night and her older sister went through some surgery for breast cancer the day before.  So some thoughts for peace of mind for Patty would be appreciated as she is too weak and fragile to fly out home for the funeral.  Sigh ... 

Thanks for letting me have this place to get this stuff out of my head.  It's much too crowded inside of it right now.

Eh ???

 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.