Santa Clara? I didn't know I was going anywhere in February except to the Black Sabbath concert at the Sprint Center. I got good seats for that show!

Won't happen here, either. I am getting hungry for a Minsky's large pepperoni pizza again, and that I do not share with anyone. Mine, all mine!

:rockon:

All the best big dog.

Great start to your 2016. I hope to see you still posting in this thread in 2025

I am not impressed with my new insurance. I have been without Xarelto for 5 days now and have been on it since last March due to the Polish sausage length blood clot I had. With my new insurance and a new doc settling in, things are not moving fast. I called the nurse at the cancer center this morning to get things sorted or to find out whose ass I need to crawl all up into to get this mess sorted. The insurance company keeps rejecting the prescription and the doctor is not telling them that YES, he needs it so he won't have a stroke. So, anyway, now I have to go all the way to the main hospital to pick up a 10 day supply with a voucher so it is free of charge, and that is about a 35 mile drive each way for me. Without insurance covering the cost of my meds, they would cost me 364 dollars for 30 pills. That is one third of what I receive from disability.

So, off I go then on my trek for meds. F you, insurance company and doctor, whomever is to blame for leaving me twisting in the wind! :cuss:

I got a call from the nurse at the center today. My insurance company has finally approved my Xarelto, but they will not approve a 90 day supply, just 30 days. Ok, that is what I *had* been getting all along. Wankers.

I will need a double prescription for my trip coming up, but if they won't supply me with enough, I will have to rely on beer and wine to keep my blood thin!

:thumb:

I haven't posted any updates in a while about my condition, because there isn't much new to tell. I am still on the stuff I was on since September and the rash is not as bad in some ways and worse in others. It never went wild again over my face like it did in October, but it spread all over my chest and abdomen. The nausea is there but not as severe and I have not puked since the very first day after the new treatment started.

I did get my treatment schedule changed in mid February since I do not want to be hooked to the pump and have to worry about the tubes getting ripped out when I am at the Black Sabbath concert here in KC.

So for some good news... my trip is all set now. I have my airfare, hotels, and apartment on the beach secured, I've scouted out many pubs in Edinburgh for my side trip and will take a 12 hour coach tour up to Loch Ness with a few interesting stops along the way, including a Scotch distillery tour. I'm not a whisky guy, but hey, when in Scotland a lad has to have a wee dram and some haggis, right?

My brother can't make the trip this year so I will be going solo again. I just have to regain some strength to schlepp my luggage. I had help last year with my brother, Chipp, and Rod along, but not this time. I will manage somehow, though. I do have lots of friends and family over there, but Scotland will be an entirely new experience. I am part Scottish on my dad' side, but have no idea where in Scotland that part is from. I just know the old man's last name was MacGhee, my grandmother's father, so he was my great-gramps or whatever they call Scottish grandpas. I intend to absorb as much as I can of Scotland in order to feel and understand my limited roots there, so I will take in sights, sounds, smells, textures, tastes, and whatever else as much as I possibly can. I will eat the common man's comfort foods, drink the ales, listen to the songs, listen to the accents, and study the architecture and landscapes. I want to feel the wind, feel the sun, and the rain. Give me as much Scotland as I can experience in 5 days!

I have even found a few new places to check out in Denmark where I will spend most of the 2 months away. It's going to be great and I leave in 3 months!

Fight like hell friend. Now that you're on top, throw some elbows cancer's nose and drive it up through its brain.

Since the cancer is just in my liver now, I can thump it a bit with my right elbow!

Jealous of you seeing Black Sabbath. Have fun my man getting to see one of the greatest bands of all time.

I got good seats, too! My friends Jeff, Rod, and Chipp are going and we are on the first level above the floor about the middle and on Geezer's side of the stage.

Oh hell yea!! Dude speaking of Geezer guy is still
Scrapping in bars. Got arrested a few months ago I think for assault
Haha

I was in Edinburgh in March about 10 years ago. I was only there for a couple of days but really enjoyed it. The central area is very walkable. Cold as hell at night. Three months from now gets you almost to May which should be a sight better than my experience in March.

I've been to Scotland 5 times, mostly to visit family. The people there are as tough as nails so you'll fit right in.

The trip sounds great. Here's hoping that the weather is on your side and you bring home the conclusive evidence of "Nessie".

I will be prepared. When I go to Denmark, even into June, I have a heavy jacket along. It's better to have it and not need it than to leave it behind and then wish I had it along! Same goes for the raincoat. My side trip to Scotland is going to be May 13 to 18, so I doubt I will see snow, but the jacket is going to be with me.

I have done a great deal of productive research for my upcoming trip, especially regarding Scotland. MapQuest was very helpful since I have never been to Edinburgh and I like to get out on foot and see things. Most of the 14 pubs I looked up are within walking distance of my hotel, and for me, if it is a mile or less, I will walk. One of the places, I may have to take a cab and I don't want to miss it since it offers live folk music most days and nights. Many of my pubs to see are close to one another as well, so as I searched the maps, the same street names came up so I am already feeling a bit more familiar with Edinburgh despite not being there yet. At night on my own, it may be safer to take a cab back to the hotel, but I will determine that while I am there. If it's cool, then I can walk back no problem. I feel very safe in Aalborg, but then I know that town like the back of my hand. Maybe that scene in Train Spotting is coming to mind where the American tourist gets the hell kicked out of him in the pub. I am a rather seasoned traveler, though, and I've never felt threatened.

And as for Denmark, I discovered two new places to check out as well. One I knew of, just never went yet. It's a restaurant called Flammen. They have a buffet which is rather pricey, about 25 dollars or so, but they offer some exotic meats such as red deer and wild boar. For some reason, wild boar sounds delicious to me, like when the chemo makes me crave Minsky's pizza. Now, I want a big old boar on a spit! Even though the buffet is a bit more than I want to pay for a meal, maybe I can make them rue the all-you-can-eat clause!

I have seen that some of you have been to Scotland and Edinburgh, in particular. Any ideas of what I should see and do? I've got a list of pubs which I will visit, because I love my beer, pub grub, and all, plus I will tour the castle. Consulting my Scottish friend in Denmark about trying buckfast and irn bru, he said leave the buckfast well alone but have the irn bru with fish and chips. For those who don't know, buckfast is a fortified wine (think Boones or MD 20/20) and irn bru is some sort of soft drink with obscene amounts of caffeine and sugar. From what I have seen online about it, I tend to think it tastes like diabetes! But, in Scotland, it outsells Coke.

And by the way, I know not to say "Edin-BURG" because the locals will frown upon it. They say it "Edinburra" or if I want to sound like I am really hip to the lingo, "Embra!"

Continue the fight against the bastard.

If I eat enough haggis, maybe the cancer will get scared and go away!

Edinburgh is a must-see. One of the most beautiful cities in the world. Lots to see, eat and many great pubs. Also, I liked Stirling - home of the William Wallace memorial and Stirling castle. Great small town and a few really nice pubs.

Lonewolf Gypsy Or Gypsy Ed.

I kid. Enjoy your trip and meal.

I am staying in Edinburgh for 5 nights at the Kenneth MacKenzie Hotel. I will take a day tour up to Loch Ness, and we will pass Stirling and stop at a distillery, too, and other points of interest taking up the whole day. It's going to be a great trip and I am betting already that I will kick myself for not going to Scotland long ago.

It's been rough for me lately. I am not feeling so good these days. I don't know what is going on with my lymph nodes at the base of my throat under my jawbone, but the left side is swollen and sore. I am not running a fever, though. The chemo has hit me hardest in my feet and fingers. My heels look like someone took a box cutter to them and my right big toe where it joins my foot is split on the underside like I stepped on glass, and it feels like I did. My fingernail beds on my right index and thumb tip have split and bleed easily. Fatigue has been hanging on as well. I need to feel better than this next week for the Black Sabbath concert and most definitely for my trip coming up in April. I can't get enough liquids in me, either, and I've been drinking water to no end today. It's weird. I don't get gradually more thirsty. It just hits me suddenly and I am parched. I am, however, glad that the chemo runs have been minimal and not as severe with the usual feelings of intense pressure in my lower intestine.

For all this complaining, though, I know of someone in much worse shape than me. I've been playing an online game and met a woman who is now cancer free, but she is not in good shape by any means. She had both chemo and radiation, had most of her stomach removed, and still has feeding tubes in her. She told me a few weeks ago that she was able to eat mashed potatoes for the first time in years. Most of her "food" goes into the tubes, so there is precious little she can actually eat via her mouth. She is gaining weight now, which is good, but she has a LONG way to go. She is 5'11" and weighs 93 lbs.

She was not expected to survive her cancer, and her now ex-husband hooked up with a new woman while she was undergoing treatment. He's with the new chick still. I can't imagine what feeling of betrayal she must have been subjected to over that prick. But, despite all of this, she prays for me and she has such a strong spirit. When things get me down, I think of her and how much worse off I could be, and how much stronger I could be or wish I could be. I do not know how much she will recover, but not much could make me happier than to find out it would be a complete recovery. I know it won't since the stomach doesn't grow back, but I pray she does recover significantly.

I guess I will put some more lotion on my feet now, get another glass of water in me, and head to bed. Tomorrow might be a good day, but even if I don't feel better than I do now, I know I will have a good breakfast and that counts for something. I like breakfast. I'll think about my trip if I need to put a smile on my face, too.

She's not the only one who prays for you Lone. I don't always remember, but I usually do, so there's that. As for people who think they have it bad, there's always somebody who has it worse, but it's not a competition, it just life. So hang in there, pray for her as much as she prays for you, and pray for those who work to heal you both. It's worth it..

I know this place is a huge source of support and I am grateful beyond my ability to express it. I don't think of it as a misery competition with the woman I wrote about; I look at her and know I could be worse off, so I try to keep myself from getting too down by thinking about what she is having to endure. I also never downplay what anyone else is going through, even if they think it is less than what I deal with. Sometimes it helps me stay positive when it is looking at something small like knowing I could have it worse than someone else has it now. Yes, my feet are causing me great discomfort, but... hey, I don't have a feeding tube. That may seem a bit strange to feel grateful over, but sometimes I have to grab onto whatever I can and not take it for granted.

I used to visit veterans in SCI wards a lot, and while they loved the company I think it was as much for me as for them. And I learned to look in their eyes, and one day I met a blind SCI patient.

Not to compare the two, but I'd encourage you to look into her eyes next time, and realize they are both the window to the soul, but a great way to let them know you're listening to them. And I've never met anybody who didn't have a story I didn't find interesting.

Keep fighting my friend, keep fighting... Fight yourself, fight with her at your side, and fight with this whole board with you too.

**** cancer... Satan's little bitch dog!

So I get this email from Expedia this morning indicating one or more of my upcoming flights have been changed and I see that SAS wants to put me on a flight back to KC from Newark almost 6 hours later than the one I booked, so I didn't accept the changes and clicked to have an agent call me. I checked the site, too, and found that my original flight is still available! So, why would I want to get back after 11 pm when I could be here at 4:30 pm instead? Is Newark Airport THAT much fun?

http://ia.media-imdb.com/images/M/MV...05,105_AL_.jpg

Fish Newark

Hope all is well my friend, dont take no shit from those dastardly ticket agents!

Maybe they will hook you up with some perks

Newark Airport is a sewer with planes. :shake:

I was born in Newark and flew out of that shithole more times than I can remember. Top three for late flights and not too much good there if your stuck in the airport. Only good potential is to fly into Newark, stay over night and visit NYC for the day.

Yes it is. especially when you mistakenly drive a commercial vehicle through it. Should have seen the looks I got :LOL:

I was trying to get in to the Anheuser Busch near there, but made a wrong turn.

I was very fortunate there were no height restrictions.

I hope you're feeling a bit better today, Ed.

I am feeling better now, since my feet are not causing me as much grief as they were earlier in the day. I wanted to go see a movie, but that was not to be. Expedia called me within an hour after I clicked that I didn't want the flight. There is a slightly earlier one out of Newark, but I'd still be stuck there for about 5 hours. I could leave Denmark a day earlier, but the flight departure is the same out of Newark, so that was no good. I have, however, seen this every year I go; flight times change at least two times before I go. So, there is a chance I will get my original back, or a better departure that doesn't have me fighting to stay awake in Newark. I might even get rerouted through Chicago, which I would prefer, even though they stuck me there overnight last year. That was no fun. I didn't get one lick of help from the airline agent, not even a voucher for food. Nothing was open when I was trying to get things set straight, but still... the airlines know we're just customers and at the bottom of the food chain. Customer Disservice, that is the modern travel game!

I have only flown through there once, back in 1995. I heard two white guys speaking as I was headed to my departure gate and could hardly make out a word they said. I *think* it was English, but that was the thickest Joisey accent I ever hoid. I don't recall much more about it other than the plane was in the air a lot faster than I ever got going out of JFK. I hate that airport most of all.

What, are you flying Continental? Avoid Newark.. it really is a bad spot, with not enough airlines flying through there. I got stuck there for an extended stay one time, and realized how few actual choices are from there. I kept thinking, if I was at JFK I would be on a flight heading home already.

Good Luck. Hope you feel best as possible.

No, I am on SAS and United for the leg to KC. I didn't want to go through Newark, but it was the cost that was the factor and times. At least it shouldn't be too busy being mid-week, but who knows? I guess once June 22 rolls around, I will find out.

Well.. a small price to pay for an otherwise most awesome trip I guess. ;)

Airports to avoid.
O'Hare. Newark. JFK. LaGuardia. ATL. Philly.

This...

Sorry you're having trouble Ed. Hopefully it turns around soon. Stay strong man. I'm thinking about you.

My feet are a bit better in that I can walk at a normal pace without wincing too much. I went out for dinner tonight and had my first pint of brew of the year. It was KC Bier Company's dunkel. Up until now, I've had half shot glasses of beer since the year started. I didn't gulp it down, just savored it. I go in for more chemo on Monday, so I figured now was the best time for a pint. I've got to keep up my endurance for Europe, right?

Ed, have ten pints. Keep up the heroic fight!

I can't have that many now! But soon, soon. When I am in Denmark, if anyone in marketing is paying attention, they are going to notice a spike in sales of brown ale!

Thats good news Ed having pain in your feet is a son of a bitch. Just no way can stay off them it must have been aggravating. That beer must have tasted awesome its the simple things in life we miss the most. Keep fighting Ed I think we all agree in here your one of our CP hero's. Your still in my thoughts and prayers and have a blast on your upcoming trip.

I have no idea if it will work for you or not but I use okeefes healthy feet. It's good on split feet and dry feet. It's worth a shot anyway.

Enjoy the beers.

I put some of that same stuff on my feet earlier. The regular Vaseline extra strength for men dry skin stuff was not giving me much relief. Now if I can just warm my feet up! They're blasted cold! I can't sleep if my feet are freezing.

I've heard this is good stuff:

http://www.seacretspa.com/upload/pro...gePic_50_1.jpg


and then these perhaps??

http://www.cambridgebaby.co.uk/catal...lSocks-264.jpg

Socks often hurt my feet more than not. When I got treatment on Monday, the nurse who oversaw my chemo IV bags asked if I was in any pain and I said not from the ankles up and she had me show her my feet. She called my doc and told him about it, and said I had the option to skip that type of chemo that gives me the rashes and is messing my feet up. I opted out for this treatment. My feet feel a lot better today, but there is still the problem under my right big toe where it is cracked from side to side. I am walking at nearly my normal pace, even with some pain involved. I am less nauseated and have less fatigue, as well, so that one treatment is a real bitch.

Unfortunately, the chemo that gives me the runs was administered and it has not hit me yet. I will be taking immodium A.D. with me to the Black Sabbath concert to be safe. I do not want to listen to the show from the crapper. I get my pump unhooked at noon and I have to go by Wal-Mart to pick up a refill, take a shower since I can't for the 2 days I am hooked up to the chemo pump, then head out to my friend Rod's for some grub. Chipp and Jeff are also going to the show and our seats are all together and pretty good, too: First level, section 105, row 14, seats 5 to 8, on Geezer's side of the stage. I am ready for a hell of a show!

Going to be awesome.. enjoy the show man!

ENJOY!

I saw the Chicago show and it was fantastic. Rattled the rafters. Not much on the new tunes, but the classics sounded legit. Ozzy is...Ozzy. but Geezer and Tony are still #1.

Enjoy it Sir. Close your eyes, and soak it in.

Hey Ed haven't heard from ya in while. I know trip is getting closer and off season and all. We all are thinking of ya check in when can. I think its ok to say we all enjoy hearing your progress reports. Take care update us when ya can.

Yup, srvy, I was also wondering how ol' Ed was doing. Maybe he'll check in and give us a nice update. Seems like a top notch fellow.

I did not get very good news today at the cancer center. My CT scan yesterday showed that the larger of my liver tumors grew 50%, from 2.0 cm to 2.99 cm and it started at 5.2 cm when I was first diagnosed. There were new spots on my liver and a lymph node nearby has been infected with cancer, shooting my CEA from 2.9 to 7.9 since my last count was checked. So, the current treatment is doing me no good, and I will be going back Monday and getting some pills to take instead of IVs and the chemo pump. The pills will be giving me side effects, too, of course. Once I return from Europe, I will start a clinical trial of some sort. Once more, I was told I can't be cured and they are trying to extend my life. They just won't say by how much.

Thinking of you, Ed. Keep fighting, brother.

Thanks for the info, Ed. You are one tough SOB. Here's hoping that a little European Vacation disrupts the stinking cancer and gets you back on track for kicking this stuff in the butt. Hang in there, buddy.

Ed, hang in there and enjoy your trip.

You are in my prayers, friend

Be the exception, not the rule

Fight-on friend, fight-on!

Well said Easy... Keep fighting Ed we all have your back.!

Praying for you my friend

I have been reading about the chemo pills. So, I have to wear gloves to handle them, and the pills go in my mouth. I should call the doctor right away if I vomit blood or it looks like coffee grounds. I must be very careful not to wound myself as I might just bleed and bleed and bleed. Sick people must be avoided like walkers on the Walking Dead. My bone marrow may not make enough stuff my body needs, so I may need blood transfusions. It might change my sense of taste. The runs are to be expected. Fatigue may be intense. NO beer. There's more, but I threw all the papers down in disgust.

Oh, and one of the clinical trials sounds really fun. They'd cut me again, laparoscopic surgery, and put beads in my liver that contain mouse cancer and then something would attack that cancer and the stuff I already have. I *hate* mice! I hate having people root around in my guts, too.

If I die on June 22nd, I don't think that would be so bad. It would be my last day in Denmark so everything I wanted to do during my trip would have been done, and I'd avoid at least one airplane meal and Newark airport. Other than flatly refusing, I see no way out of the chemo pills, however. :grr:

Ed light a fire under that inner Viking because
http://images.t-nation.com/forum_ima...6ef4914b22.jpg
Praying hard for ya buddy.

LWE

I read an article today that I hope will offer you some encouragement. It was talking about wrestling, the pursuit of a champion thing by a guy named John passaro.

It was about winning, but I think the same things apply in success...and survival.

"It is in working endlessly and seeing no results; and still continuing to work because your will is stronger than everyone else’s doubt.

It is in learning that one man with belief is worth a thousand with only an interest.
It is in learning to master the concept of “Again” – the ability to muster up a little more when the world would understand if you quit."

Keep up the fight young man.

Keep battling Ed, and think about what is important, here, eternally, everything.

We all admire your bravery and are pulling for you.

My thoughts and prayers are with you during this difficult time.

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 .

THANK YOU!

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. :eek:

$46k, and it wasn't working?? Wow...

Keep up the good fight, Ed.

Keep fighting, Ed.

I wish I had something inspirational to say, or some comfort to give, but I'm afraid it would ring hollow.

Just know that I'm praying and thinking of you. You really are an inspiration.

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.

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:

How Doctors Die

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.

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.