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]
I went to the research center today and signed my consent forms, got an EKG and lost some chest hair (:-)), gave a urine sample, and had blood drawn. Tomorrow, I go to the main hospital on Rainbow, the place I loathe, and have a CT scan. Since they were able to get me in for a scan tomorrow, that will move my treatment schedule up about a week. And most important to me, there will be no conflict with my treatment and my upcoming trip. It will be over before I leave. I do not look forward to the two clinic days where I will have to sit there for 13 hours or the pint of blood they will drain from me over the next 7 weeks. [Reply]
Originally Posted by Lonewolf Ed:
I went to the research center today and signed my consent forms, got an EKG and lost some chest hair (:-)), gave a urine sample, and had blood drawn. Tomorrow, I go to the main hospital on Rainbow, the place I loathe, and have a CT scan. Since they were able to get me in for a scan tomorrow, that will move my treatment schedule up about a week. And most important to me, there will be no conflict with my treatment and my upcoming trip. It will be over before I leave. I do not look forward to the two clinic days where I will have to sit there for 13 hours or the pint of blood they will drain from me over the next 7 weeks.
I'm glad you've got another trip coming up. They always seem to do wonders for your spirit. Keep us posted! [Reply]
Originally Posted by Dagnabit:
I'm glad you've got another trip coming up. They always seem to do wonders for your spirit. Keep us posted!
Here is the timeline: I leave KC on April 24 and arrive in Aalborg on April 25; on April 27 I am throwing a big party in the Irish House for my family and friends and have 22 confirmed so far, waiting to hear from 8 more; I am going on a side trip to London from May 2 to 7; then I am back in Denmark until June 20. My friend Chipp will be flying over with me and staying for 2 weeks, but he wanted to stay longer. He is going with me to London, too. My brother and nephew will be arriving the same day as I do, but a few hours later. My nephew is staying for 3 weeks and my brother for 6. [Reply]
Originally Posted by Lonewolf Ed:
Here is the timeline: I leave KC on April 24 and arrive in Aalborg on April 25; on April 27 I am throwing a big party in the Irish House for my family and friends and have 22 confirmed so far, waiting to hear from 8 more; I am going on a side trip to London from May 2 to 7; then I am back in Denmark until June 20. My friend Chipp will be flying over with me and staying for 2 weeks, but he wanted to stay longer. He is going with me to London, too. My brother and nephew will be arriving the same day as I do, but a few hours later. My nephew is staying for 3 weeks and my brother for 6.
Sounds awesome, man. Be sure to post up some pics! [Reply]
Originally Posted by Lonewolf Ed:
Here is the timeline: I leave KC on April 24 and arrive in Aalborg on April 25; on April 27 I am throwing a big party in the Irish House for my family and friends and have 22 confirmed so far, waiting to hear from 8 more; I am going on a side trip to London from May 2 to 7; then I am back in Denmark until June 20. My friend Chipp will be flying over with me and staying for 2 weeks, but he wanted to stay longer. He is going with me to London, too. My brother and nephew will be arriving the same day as I do, but a few hours later. My nephew is staying for 3 weeks and my brother for 6.
You need to wear Chiefs stuff to the party and have the room learn the tomahawk chop! [Reply]
Originally Posted by Lonewolf Ed:
Here is the timeline: I leave KC on April 24 and arrive in Aalborg on April 25; on April 27 I am throwing a big party in the Irish House for my family and friends and have 22 confirmed so far, waiting to hear from 8 more; I am going on a side trip to London from May 2 to 7; then I am back in Denmark until June 20. My friend Chipp will be flying over with me and staying for 2 weeks, but he wanted to stay longer. He is going with me to London, too. My brother and nephew will be arriving the same day as I do, but a few hours later. My nephew is staying for 3 weeks and my brother for 6.
Dude , You are livin life large. Kudos ! Don't know if you realize it but I'm sure there's a shit load of people envious of you ! Well, you know what I mean. [Reply]
Originally Posted by Hog Farmer:
Dude , You are livin life large. Kudos ! Don't know if you realize it but I'm sure there's a shit load of people envious of you ! Well, you know what I mean.
I certainly am. I haven't traveled abroad in far too long. Ed's stories on the road bring back a lot of good memories! [Reply]
Originally Posted by Lonewolf Ed:
I went to the cancer research center yesterday to meet with the doc and go over the paperwork and insurance stuff. We talked quite a while about my medical history, my trip, and the possible treatment I may receive. There could be a problem with me starting for 2 months and being off for 2 months, but he said DO NOT cancel my trip. He saw nothing that would make him say it was a bad idea to go concerning my health. That was actually a big relief. He totally understands and supports patients needing that time away and I didn't have to convince him that it makes me feel alive again to be away from doctors, needles, and pills.
My treatment is not unique to the cancer center, but a national endeavor, so my doc is not the one in charge of it all, but is in charge of the treatment with me. He wanted to stress that while there are experiments to run, such as a drug cocktail, while I am on the treatment to see how my body reacts to them and how long it takes to metabolize and rid them from my body, I am not a lab rat. He said if he were to just administer a drug on a whim to see what it does to me, I could have his ass for assault and he'd lose his license. The drugs I'd have to take are nothing scary, just caffeine, warfarin, and two others I can't spell, but they are all common things people take. So, for example, if caffeine skews my blood count numbers or makes me feel ill, that data will be collected and one day when the treatment drug is FDA approved, it would probably say on the bottle, "avoid caffeine with this product" or if nothing happens, then it won't. I see and understand the value of the drug cocktail. And damn the luck, I *still* won't be able to have any grapefruit juice. :-)
There will be two days where I have to stay at the clinic for 13 hours, which will suck massively, but hey, if I gotta, I gotta. And as if I have not suffered enough humiliation these past 2.5 years, and many of you on here may be envious of this part, I will have to keep... a poo diary. It will be done on something looking like a cell phone. It has 8 different pictures of turds and I press the number that mine resembles the most. The ones I saw were things that have never come out of me: elk droppings, a photoshopped brown banana, and something looking like some weird coral reef. If the most common side effect hits me, the runs, I hope there is a photo of wall spackle on there so I can press that number.
One of the plus side of things is that this treatment is not via I.V., but in pill form. They will have to draw blood a lot, and that will be done through my port. I have a 26 or 27 page consent form with info about the treatment, side effects, what sort of things I must do, and so on, and they sent me home with it, urging me not to just sign the thing, but go over it in depth and talk to family and friends about it first. I like their approach to treatment and it was also stressed that their top priority is my well being, so once again, I am not some lab rat and they give me X just to see what it does to me. Second is treating the cancer and hopefully having good results where my numbers don't rise but go down and I feel better.
Why don't they just have you take a picture of your poop and send it in? It seems like there would be a lot more cross-patient reliability if they had a third party "scorer.":-):-) [Reply]
Originally Posted by Fat Elvis:
Why don't they just have you take a picture of your poop and send it in? It seems like there would be a lot more cross-patient reliability if they had a third party "scorer.":-):-)
Originally Posted by Pueblo Chieftan:
Hi Ed...nice to meet you
Do you have pancreatic cancer?
Are you/they concerned about pale stools?
No, I have colon cancer that metastasized to my liver and was at Stage IV when I was first diagnosed. It has since spread to lymph nodes in my abdomen and my lungs. The cancer in my colon is gone since they hacked out 9 inches of the thing in August of 2015. If pale stools were ever mentioned, it must have been once and I said no, since I really can't recall if my doc and I have ever talked about that aspect of it. [Reply]
Originally Posted by Lonewolf Ed:
No, I have colon cancer that metastasized to my liver and was at Stage IV when I was first diagnosed. It has since spread to lymph nodes in my abdomen and my lungs. The cancer in my colon is gone since they hacked out 9 inches of the thing in August of 2015. If pale stools were ever mentioned, it must have been once and I said no, since I really can't recall if my doc and I have ever talked about that aspect of it.
Wow, God bless you Ed..you're a true warrior, brother. [Reply]
I saw a photo of the CT scan I had this past Saturday and one from two months ago. The existing cancer in my liver and lungs has grown and there are new spots in both, plus another lymph node. If this new treatment I am about to begin does nothing for me, I may not make it past August after all. [Reply]
