I thought I'd start a new thread for updates on my cancer treatments and whatever else is going on, since the bad news thread title is misleading now.
My last treatment went better than the previous two and my chest wound is still closed up, which is a good thing. My arm is getting slightly stronger and I hope to resume lifting dumbbells next week. I need to build up my strength again, because I am going back to Denmark in May and I am extremely pumped about that! I'd like to be able to schlepp my own checked bag and not have someone else lifting it for me.
It's going to be a fabulous trip, 6 weeks and a couple of days for me. My brother is going along as well as my friends Chipp and Rod. Chipp is staying close to 3 weeks and has not gone with me over there since 2006 so he is also very pumped to be going. It will be Rod's first trip and he will be there for 2 weeks. I will get to be a tour guide. Also, I am throwing a party in my favorite pub of all, the wonderful, ever-magnificent Irish House in Aalborg on May 7th. The owner and I are friends and he will give me a little discount. We'll have Irish stew and brews in the cellar and I hope to have around 25 family and friends there. I might bill it as the "Fu** Cancer Party." A few months back, I was not sure I'd ever be able to go over to Denmark again or if I'd even be alive, but the cancer hasn't gotten me yet. I'm doing a number on it, instead.
Some other cool things I plan to do when I am back in my ancestral lands include a wine tasting in a castle, touring another castle and the northernmost manor home in the country, and visiting Skagen, the top of Denmark, where you can stand on a little patch of beach and have one foot in one sea and one in another. They also have a brewpub up there I am wanting to check out. I will start and end my trip in Aalborg and spend 5 weeks in an apartment I rent that is very close to the beach. I can hardly wait for May 4th to roll around! [Reply]
Originally Posted by Gonzo:
Ed, I don't know if it's been mentioned here or not and I don't really care.
With all the supportive messages you've received and people telling you to keep fighting, somethings been lost.
I want to thank you.
You have decided to enroll in a grueling clinical trial that can have severe side effects. Where you could just decide to say "**** it" and stop all treatment, go on your vacations and things like that and have a huge grand finale, you've instead decided to seek answers for this horrible disease that's taken so many. For that, I thank you. While it may or may not be the answer doctors are looking for, it's a variable they can either eliminate or utilize for future generations.
You are doing important work, my friend. No matter the outcome you've decided to take us
one more step towards a cure.
Thank you, Ed. Keep up the good fight my man. You are an inspiration to many.
Agree, this x millions, You are fighting this head on, just as my Dad did back in 1969. Becoming a human guinea pig all in the name of science .
I would prefer the other clinical trial since it involves immunotherapy, which from things I have read, seems very promising. No one has to cut on me and root around inside of my torso, so that is a huge plus. My doc also said if the clinical trial doesn't help me, we can go back to the chemo I was on in the first place which did give me great results. The second chemo I was on is what stopped working so I am not getting that anymore, and one benefit of that is the hideous rash I have will finally go away. My chest and stomach look like I have a bad case of chicken pox and I have red bumps on my arms and legs, patches of dry red skin all around my face as well as red bumps on my throat and neck. Another benefit is those treatments that stopped working were billed at over 46 grand every time. Even though I have Blue Cross and Blue Shield, seeing those outrageous numbers is why I got some little supplemental insurance for heart conditions. :-) [Reply]
Originally Posted by Lonewolf Ed:
I would prefer the other clinical trial since it involves immunotherapy, which from things I have read, seems very promising. No one has to cut on me and root around inside of my torso, so that is a huge plus. My doc also said if the clinical trial doesn't help me, we can go back to the chemo I was on in the first place which did give me great results. The second chemo I was on is what stopped working so I am not getting that anymore, and one benefit of that is the hideous rash I have will finally go away. My chest and stomach look like I have a bad case of chicken pox and I have red bumps on my arms and legs, patches of dry red skin all around my face as well as red bumps on my throat and neck. Another benefit is those treatments that stopped working were billed at over 46 grand every time. Even though I have Blue Cross and Blue Shield, seeing those outrageous numbers is why I got some little supplemental insurance for heart conditions. :-)
Originally Posted by Gonzo:
Ed, I don't know if it's been mentioned here or not and I don't really care.
With all the supportive messages you've received and people telling you to keep fighting, somethings been lost.
I want to thank you.
You have decided to enroll in a grueling clinical trial that can have severe side effects. Where you could just decide to say "**** it" and stop all treatment, go on your vacations and things like that and have a huge grand finale, you've instead decided to seek answers for this horrible disease that's taken so many. For that, I thank you. While it may or may not be the answer doctors are looking for, it's a variable they can either eliminate or utilize for future generations.
You are doing important work, my friend. No matter the outcome you've decided to take us one more step towards a cure.
Thank you, Ed. Keep up the good fight my man. You are an inspiration to many.
This is an amazing post and there is not much I can add. I just want to say that I appreciate you sharing this journey with us as well. I have been very fortunate and not had anyone close to me impacted by cancer so this has been an interesting view into just how bad it can be while also showing how strong and resilient humans can be. So, thank you for sharing with us and allowing us the opportunity to provide support as best we can. [Reply]
This is for you, Ed. Gonzo made a good point about the benefit your data point could be to the future of cancer research, but this is your time now and that's more important than one data point. Decide what you want and don't let cliches about fighting the good fight convince you to do what you don't want to do. Live the rest of your life your way, whichever way that is.
Here's a powerful article about end of life issues. It's been posted here before so you may have already read it. But if not, here you go:
Originally Posted by Lonewolf Ed:
It did work up until the last two treatments. I was on it since mid-September.
Have considered something more...holistic??
A lot of new information coming about CBD and THC oils and tinctures used in the treatment of cancer. Not symptons...but the actual cancer itself. [Reply]
Originally Posted by patteeu:
Come on. The idea that pot somehow cures cancer is a pipe dream.
Shit, not only is an efficient fuel and fiber source, but it wouldn't surprise me if it's illegal BECAUSE this cheap, efficient plant could replace $46k per trip chemo treatments...
But this isn't the thread for that particular discussion. This is Ed's thread. I just asked a question, that's all. [Reply]
Originally Posted by rabblerouser:
Shit, not only is an efficient fuel and fiber source, but it wouldn't surprise me if it's illegal BECAUSE this cheap, efficient plant could replace $46k per trip chemo treatments...
But this isn't the thread for that particular discussion. This is Ed's thread. I just asked a question, that's all.
^ Don't bring that shit in here guys, of all places.
Keep fighting, Ed. I've been following your thread since you were diagnosed and you really are an inspiration and tougher than I'll ever be. God bless. [Reply]
Originally Posted by patteeu:
This is for you, Ed. Gonzo made a good point about the benefit your data point could be to the future of cancer research, but this is your time now and that's more important than one data point. Decide what you want and don't let cliches about fighting the good fight convince you to do what you don't want to do. Live the rest of your life your way, whichever way that is.
Here's a powerful article about end of life issues. It's been posted here before so you may have already read it. But if not, here you go:
I can not agree more with patteeu!! Ed, you're a champ, no matter what happens and when the time comes.......hopefully later than sooner....you will be missed. [Reply]
Originally Posted by Chromatic:
^ Don't bring that shit in here guys, of all places.
Keep fighting, Ed. I've been following your thread since you were diagnosed and you really are an inspiration and tougher than I'll ever be. God bless.
Thank you very much. It's overwhelming hearing all that from you all, but not in the get away from me kind of overwhelming. One of the nurses, one who usually jabs the needles in my chest, told me I was the greatest man she has ever met. I was taken by surprise by that and I really didn't know what to say so I just blinked and said, "Me?" She said something about how I am facing cancer compared to the others she sees. I was beyond humbled and really couldn't say much to her other than to say thanks and I appreciated that very much. Whenever I die, I won't be made a saint, and not just because I am a Lutheran. Maybe part of my strength comes from being bullied and pushed around a lot when I was a child. Cancer is very much like a big nasty bully, too. Now I can fight back, and bullies piss me off to no end. I have had my fill of excrement sammich in this life. Now, if someone or something comes and tells me I have to take a bite, it's going to be a fight. [Reply]
