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Old 01-24-2015, 04:51 PM  
Lonewolf Ed Lonewolf Ed is offline
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Good news [Lonewolf Ed]
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!
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Old 02-02-2015, 10:54 PM   #46
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Originally Posted by Lonewolf Ed View Post
Round 11 of chemo for me is tomorrow, starting with the blood draws and the needle being jammed into my chest where it will stay for two days, pumping chemo drugs into me. My first appointment is at 7:45 am. Ugh.
The whole needle jammed in the chest thing sounds brutal . Holy shit, man!?
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Old 02-02-2015, 11:04 PM   #47
Lonewolf Ed Lonewolf Ed is offline
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The whole needle jammed in the chest thing sounds brutal . Holy shit, man!?
Well, it depends on the nurse and if she puts her shoulder into it or not. I've briefly looked at it once... damned thing looks like a crooked fish hook. Sometimes, it is about as painful as a large mosquito bite and others it stings like a bee. It takes up to an hour before it gets comfortable in my chest, or maybe it is better to say I can't feel it in there so much so that is about as comfortable as it gets. There is a plastic tube attached to it so the chemo can get pumped into my heart and then throughout my body. I get three bags of chemo stuff, and the final one is given to me through a pump which I have to carry with me in a fanny pack and have it in my bed with me. It pumps folfox or whatever they call it for 46 hours. Then I go back to the cancer center and they take it off, pull the needle out after running saline through the tube, put some cotton and a bandage on me and send me on my way.

It is a pain, but it would be much worse if I had to stay in the hospital for 2 days every other week watching a big bag of stuff drip into me slowly. I can sleep in my own bed and not have nurses and doctors pestering me around the clock, so I just remind myself of that as I bear having a toxic chemical being pumped through me for 2 days. I have to be more careful so as not to catch the tubes in a car door or on a chair.
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Old 02-02-2015, 11:13 PM   #48
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Wow, I can totally see myself being willing to go through all that so I could spend time at home instead of in the hospital.
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Old 02-02-2015, 11:15 PM   #49
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Sleeping in your own bed is so much better than anything they could possibly offer.
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Old 02-02-2015, 11:16 PM   #50
Lonewolf Ed Lonewolf Ed is offline
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Sleeping in your own bed is so much better than anything they could possibly offer.
That depends on which nurse I got! In all seriousness, though, unless it was Kate Upton... send me HOME! Better bed, better food, and peace and quiet.
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Old 02-02-2015, 11:43 PM   #51
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It's like the pulp fiction overdose needle, huh?

How many more rounds have you got? Due for any more imaging soon?
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Old 02-03-2015, 06:13 AM   #52
Lonewolf Ed Lonewolf Ed is offline
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It's like the pulp fiction overdose needle, huh?

How many more rounds have you got? Due for any more imaging soon?
It isn't that big of a needle, but in my mind's eye, it seems like it could poke out of my shoulder blade on the other side! All I have heard about how many rounds is "indefinite." I am sure they will run another CT scan on me, but no date has been set yet. I meet with the colon doc on the 20th, so for now it's the routine of nurses and needles, nurse guy who takes my vitals, and alternating with the liver doc and the nurse practitioner, then treatment.
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Old 02-03-2015, 08:07 AM   #53
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So far, so good. I didn't pass out and the needle stick was not bad at all. It didn't really hurt and was more like a feeling of some pressure. For some reason, the nurse had trouble getting blood from me. She said I was nervous, and I asked why she thought that. "Because you're talking a lot!" she replied. Hrrrmph. Well, let me keep yappin' then! Now I am waiting for Eli to come and call me back to get my vitals.

How about that? He came out and called for me as I typed this.
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Old 02-03-2015, 09:41 AM   #54
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I got some news from the doc that I liked. She told me the treatments are going great but she wants to take me off the oxa- crap, still can't say or spell it after all this time! Anyhow, she wants me off of it for a while after this treatment so I don't suffer permanent nerve damage. That drug is the one affecting my fingers and feet when they get cold, and currently I have a feeling like someone is pinching my fingertips on several fingers, and it has affected my tongue where I have lost some sense of taste but not much and the tip of my tongue feels rough as if I burnt it on some hot food days back. I also like that since the oxawhatever takes 2 hours for the bag to finish dripping into me, I will be getting out of this place in no time the next several treatments! Woo hoo!
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Old 02-03-2015, 11:10 AM   #55
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I got some news from the doc that I liked. She told me the treatments are going great but she wants to take me off the oxa- crap, still can't say or spell it after all this time! Anyhow, she wants me off of it for a while after this treatment so I don't suffer permanent nerve damage. That drug is the one affecting my fingers and feet when they get cold, and currently I have a feeling like someone is pinching my fingertips on several fingers, and it has affected my tongue where I have lost some sense of taste but not much and the tip of my tongue feels rough as if I burnt it on some hot food days back. I also like that since the oxawhatever takes 2 hours for the bag to finish dripping into me, I will be getting out of this place in no time the next several treatments! Woo hoo!
Keep plugging away Ed.
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Old 02-03-2015, 11:26 AM   #56
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It isn't that big of a needle, but in my mind's eye, it seems like it could poke out of my shoulder blade on the other side! All I have heard about how many rounds is "indefinite." I am sure they will run another CT scan on me, but no date has been set yet. I meet with the colon doc on the 20th, so for now it's the routine of nurses and needles, nurse guy who takes my vitals, and alternating with the liver doc and the nurse practitioner, then treatment.
Ah, gotcha. I was interested because the nature of my work involves surgery and endoscopy, so I read these kinds of reports all the time. I guessed that you might have some more radiology soon to see how things are looking.
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Old 02-03-2015, 11:30 AM   #57
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Originally Posted by Lonewolf Ed View Post
I got some news from the doc that I liked. She told me the treatments are going great but she wants to take me off the oxa- crap, still can't say or spell it after all this time! Anyhow, she wants me off of it for a while after this treatment so I don't suffer permanent nerve damage. That drug is the one affecting my fingers and feet when they get cold, and currently I have a feeling like someone is pinching my fingertips on several fingers, and it has affected my tongue where I have lost some sense of taste but not much and the tip of my tongue feels rough as if I burnt it on some hot food days back. I also like that since the oxawhatever takes 2 hours for the bag to finish dripping into me, I will be getting out of this place in no time the next several treatments! Woo hoo!
Great news. Less medicine is better than more.
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Old 02-03-2015, 10:25 PM   #58
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Later in the day, I got some news I didn't care for so much. My CEA went up a little bit, to 6.1 from 5.3 and it was 6.3 the time before last when it was checked. I want that number to hit ZERO.ZERO, blast it! The nurse said it was not a big deal and I think it may be why I passed some blood again at times the past week. My cold sensitivity is pretty bad this time, too. As soon as my fingers get a little cold, BAM, there it goes. I couldn't type when I got home because it felt like I was pressing my fingers on one of those little ball-shaped cacti with the fine needles. Both hands even felt asleep when my fingers got cold and that is new, as before it has just been in the fingertips. So, the doc was right to get me off the oxaliplatin before permanent nerve damage occurs. It would make me truly disabled if my hands and fingers felt like that all the time.

On the bright side, I had my favorite nurse, Amanda, bringing me chemo bags today. I like her!

I almost forgot... I asked my doc about the CEA numbers and if I was nearly dead in September when it was 88.5 and she said no, she has seen numbers in the thousands before. Holy crap. Here I was thinking with 88.5, I was neck deep in the grave back then!
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Old 02-05-2015, 09:41 AM   #59
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I am getting the pump removed in 2 hours, so I am happy to be free of it and get back into a more normal routine!
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Old 02-05-2015, 11:19 AM   #60
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I am getting the pump removed in 2 hours, so I am happy to be free of it and get back into a more normal routine!
Keep up the fight, brother.

Cancer sucks.
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