My cancer journey

[thecfarm]

Ed, I am thinking of you. 
I've been on the crouch watching the world go by for a week, one more week to go, at least, than I will see what the Dr has to say.
Hang in there, sleep as you need it, all the projects will still be there when you are able to get to them.
Good luck to you!!!! 

[Bricklayer51]

hang in there Ed i was supposed to be dead two and a half years ago there was a few times i wished i was with the chemo and all but i kept thinking one more day see what happens i have a super cancer doc and his team i dont get around well but i try keep your head up things will work out dont forget to thank the big guy up stairs

[Bruno of NH]

Thinking of you everyday Ed

[nativewolf]

Ed I am thinking of you.  Hope you are well.  Just had my colon snipped but only5". Had been working so much we didn't have time to write or post much.  

Hope you have some more good days out in woods this summer!  

[samandothers]

Ed wish you well in your adapting to the new medicine.

nativewolf, hope your surgery went well, and you are improving!  I had a good friend that had similar and now jokes he has a semicolon.  He has had not further issues for years now. 

[Ed_K]

 @ thecfarm, it's been a month now how are you doing? The Dr. let you go back to work? I'm liking the new meds and pretty much figured out that each time I take the ninlaro (4 am on Thursday) I'm going to sleep from Friday night to Monday Morning. But that's ok the weekends are for resting right.Sunday and I was up at 4:30 am checked my e-mail and right back to sleep till just an hour ago, here reading the FF and can't keep my eyes open. Have a great day.

[thecfarm]

I go tomorrow back to the Doc. I went 2 weeks ago and was still in some discomfort.
I feel much much better now. I should be able to go back to work. I would suspect 25-pound limit.
I was still having trouble walking 2 weeks ago. My job requires me to be on my feet and A LOT of walking. I feel I can do that now. 
Looking forward to getting that chainsaw in my hands. But know that is still a while aways.

[Ed_K]

 @ Bricklayer51, Do you go to Lansing or Detroit for your treatments? Mayo by chance, I've heard they are a great place.

[Ed_K]

thecfarm, bet it would be nice to go back to work if you have air conditioning. It's been Dang hot here for 4 days.

[Ed_K]

NW, did you go back cutting that black gold did you? Anyway, how are you feeling did they use one of those little probes to do the op?

[nativewolf]

Ed wish you well in your adapting to the new medicine.

nativewolf, hope your surgery went well, and you are improving!  I had a good friend that had similar and now jokes he has a semicolon.  He has had not further issues for years now.

Semicolon is a good one!  Should be good to go for a while.

[nativewolf]

NW, did you go back cutting that black gold did you? Anyway, how are you feeling did they use one of those little probes to do the op?

They did use a robot, frankly it is amazing.  Almost no pain, nothing anybody working in the woods would call pain.  No heavy lifting for 6 weeks or a hernia will blow out and then it is tough to repair.  
We are just cutting yellow poplar while we figure out the bear but will be talking to two landowners about some large walnut jobs for October.

[nativewolf]

Are you getting out ?  Sorry to hear it is hot up there.

[thecfarm]

Ed, no air at work, it's broke. Unit is more than 40 years old. Been repaired a few times.
Suppose to be replaced sometime before winter. It's air and heat combined. 
Have not been at work for a month, so maybe it's done?

[nativewolf]

Thecfarm I hope it was done.  Summers are not so bad there but if I recall that ends next Friday for you then you have a couple weeks of fall, then winter for 10 months. Hate for you to have no heat😃

[thecfarm]

Oh we still have a good 3 weeks of warm weather. 
Then the 10 months of winter will come.  ;D  
That helps keeps the population down. 
But one year when I was cutting wood with my Father, '94-'97 Sept was a hot one. In the 80's every day. My Father kept telling me, "It can't last, it can't last".  I can still hear him say that. It lasted the whole month of Sept. 

[Bricklayer51]

hey Ed good to see you are active and well i go to the hospital in alpena mi  they have a cancer center there its community care through va other wise i would have to go to ann arbor 4 hours away going for a c-scan in two weeks 

[Ed_K]

Starting over again, I had quite a lot wrote and lost it twice now.

 Last week on the 28 we went to a neurosurgeon. I've been having a lot of pain going down both legs and got the VA to ok to get an MRI. We got the appointment and went and had a talk with him. I knew I had problems with L4 and L5 as I had the disk operated on back in 1995. Well this time it's not the disk that's the problem, the way the Dr. explained it, it is the bone above and below that are moving closer to my nerves, giving me the pain. The only way to fix this is to operate, which he won't do because of my multipule myeloma.

 This really bums me out, I have the tumor in my neck that this Dr. said is still there, plus this back thing. I more or less am stuck with the tumor maybe growing back and shutting off the nerves there and not be able to move anything below my head. And or my back nerve goes bad and I don't walk. The Dr. litterly said to just keep going with a cane or walker when it gets bad or maybe the cancer gets way better which then he could operate.

 This is where I just throw it over my shoulder and say ok I'll worry about it later. 

[Magicman]

Thanks for the update.

My Prayer is that you can keep on "keeping on" Ed.

[Stephen Alford]

   Hey Ed sorry the news is not better.  The part were the Dr. said ...just keep going... thats what matters.  You and your family are in our thoughts and prayers.  

[doctorb]

Ed-

Sounds like you have lumbar spinal stenosis.  Sorry that you didn't hear a fix from your doc.  I might ask him, "how bad does this have to get before I become an operative candidate in your eyes."

On the other hand, some patients get better with more non-invasive procedures.  Injections may or may not help.  I have heard of one procedure called the MILD procedure, which is done by pain docs and not spine surgeons.  I have no idea whether you are a candidate for such a procedure, and its effectiveness is debated, but it is something that might be considered give your other issues.  I am totally in the dark about this technique and whether it applies to you, but if your stenosis becomes further debilitating, and you are not a candidate for a decompression via surgery, it might be worth investigating.

[thecfarm]

I hope it does get any worse for you.  :(

[Ed_K]

 Thanks MM, Stephen and Cfarm.

 @doctorb, the neurosurgeon said that I need the operation now but won't do it because of the multiple myeloma. He explained it as a,hallway where the floor and ceiling are pushing on the nerve and that he would grind the two of them away from the nerve. He even had to tell us about his grinder that runs at 72k rpms.

 I tried steroids and they only worked for two weeks. Basicly I have to wait till I can't stand the pain or can't walk. Or I get to where the cancer light chains ( KAPA ) get to normal " I'm at 194 and normal is 3.30-19.40". I have another meeting with my MM specialist in Sept. I'll be asking about any and everything that I can try. Thanks for the mild procedure idea, that would help with my pain I'd hope.

 I hope I can get on a car-t cell trial, I've heard most people who get on one, end up almost cured.

[YellowHammer]

That is rough.  

I hear all about these minimally invasive back surgeries, a tiny incision, and done.  Are there other surgeons who may waive some of the conventional issues and try to help?  I really hope you find a solution.

Hang in there!  

[kantuckid]

Ed-

Sounds like you have lumbar spinal stenosis.  Sorry that you didn't hear a fix from your doc.  I might ask him, "how bad does this have to get before I become an operative candidate in your eyes."

On the other hand, some patients get better with more non-invasive procedures.  Injections may or may not help.  I have heard of one procedure called the MILD procedure, which is done by pain docs and not spine surgeons.  I have no idea whether you are a candidate for such a procedure, and its effectiveness is debated, but it is something that might be considered give your other issues.  I am totally in the dark about this technique and whether it applies to you, but if your stenosis becomes further debilitating, and you are not a candidate for a decompression via surgery, it might be worth investigating.

Not to take away from Ed's situation at all, but myself and many others have lumbar spinal stenosis. And I did ask more than one back doc the question you provided. My answers have all been that I'm a lucky guy and far too active to be a candidate for fusion. That was in spite of my mentioning others I know who had various back fixes that helped them a lot. 
With back issues it's tough to get past the pain pill idiots having soured the water to be repaired, or so it seems. Same for the tort crap. 
That most recent back doc shares a suite with my hip & knee doc who asked me how my visit came out with his neighbor. I played nice and said I didn't appreciate him telling me by talking down to me that he didn't have the same replacement fixes as my Hip doc. I suppose he meant well but most of us have never heard of a back replacement, and I avoided saying just that, even after I'd talked of a surgery that is common.
As you can see, this touches a sore spot for me, literally speaking :D In fact it's what keeps me awake at night when my NSAID wears off.
Ed, keep your chin up! A guy can only worry about so much stuff at one time?