Went in and met with the liver surgeon at 10:30 we went over my scan from Tuesday, everything looked great and it looked like the chemo was working. My bad cells might be dying and the nodule near a couple major veins in my liver were gone.
After this I got some paperwork for more blood work for blood type in case there are some problems or a transfusion is needed. I also had to get insurance covered (of course if you can't pay they won't do it).
I then went to my stoma therapy class where I sat down and talked to a lady about my shit bag. She showed it to me and how it works and connects. We talked about foods you need to thicken your stool and what foods make it smell bad or smell better. It is all kind of a nightmare but better then dying. Gas will fill it up which kind of makes me laugh. I will have it until 4 weeks after chemo. I will start chemo again in 4 weeks then 6 weeks of chemo then 4 weeks then they will re attach my colon to my anus. Awesome. Awesome Awesome.
Then I got the blood drawn gave them my insurance and met with the ass surgeon. He explained it to me and we talked about stuff I already knew. I had the same consultation in Boise before they decided it couldn't be done. Anyway got surgery scheduled for August 16th not sure what time but wish me luck. should be around a 4 hour procedure, won't be able to get out of hospital for 2 - 5 days. (I will be out as soon as possible no matter what). Then need 4 - 8 weeks of rest.
Mall of America tomorrow won't that be great. Sounds exciting. Going to stay in Minneapolis for the next couple nights my dad is going back to Boise on Sunday. then I am coming back to Rochester on Monday and surgery on Tuesday. then hopefully home in Boise by Friday or Saturday. At least I will get on the plane first because of my wheel chair.
Friday, February 12, 2010
Tuesday, February 9, 2010
F#$k the Mayo Clinic and tired of all this BS
Got in yesterday to Rochester, flew from Boise to Denver to Chicago then to Rochester. Was a nice 12 hours of flying and waiting. Got the same hotel room as last time. Which made me laugh. Feel like I am spending a lot of time in hotel rooms this week. Saw Boondock Saints II and it was disappointing. Too over the top really enjoyed the first one but this one fell way short.
Today I got up at 5 am got to my blood work and had that done then went for an ECG. ECG was to make sure they know how my heart works when monitoring my surgery. So that was done, went and took a nap, woke up ate a little bit and got ready to for the exciting part, talking to the surgeons and getting my date for the surgery to cure me. Right before I leave to walk over to the appointment, my oncologist calls me and lets me know they never got the CT scan I did in Boise last week. So I call Boise and ask them to send it again, they fax information saying nothing has really changed on the scan from last time about a month ago.
The mayo oncologist calls me back and says we are going to do a CT Scan here in 20 minutes. I run over there and wait and wait. I am impatient and pissed because I just did this a week ago to make today easier and now it just sucks.I get two bottles of iodized water to drink. I have a power port in so they don't have to go through my arms all the time when giving me medicine or drawing blood. In Boise it is very simple to get it used but here at the Mayo it is like this huge hassle. To take blood in the morning I just went through my arm. I should have gone through my arm again but I didn't for this. They called some lady over from somewhere else and she brought a cart that had the stuff to access my port. It was like a huge production and some of the nurses had no idea how to access a port. Radiology should know I would think. CT scans should have that at their hands pretty easy.
By the time I got into see the doctor the surgeons had no more time to talk to me I will have to wait until Thursday. The CT scan wasn't loaded by 5 pm and by that time everybody is done at the Mayo Clinic. It is stupid as hell. I believe if I would have got the go ahead from them I could have had surgery tomorrow and been heading home by Friday or Saturday, now I can't see them until Thursday and probably won't have surgery until Friday or Monday, which would mean I won't be home for at least another week. THIS TOWN SUCKS BALLS TOO, so it is no fun to hang out in, you can't go outside and without a car there is nothing to do.
My mom comes tomorrow which is OK I guess, hanging out with mom and dad can be OK. Hopefully, at least she is renting a car so I can go to a movie theatre or something if surgery doesn't happen. I just want this to happen. I am pretty nervous about surgery because putting me to sleep and hoping I wake up is a little scary. It is giving up a lot of control which I don't like. INSURANCE GOT APPROVED which is huge since it will save my parents retirement. I am tired of having to babysit doctors all the time. I make so many calls to make sure doctors are on track it is stupid, I even called the mayo clinic last wed to make sure they got the CT scan and I swear they told me they did. Of course they didn't. Bunch of BS.
Home life is calling me to get stuff done, I don't have time for all of this cancer bullshit. I have kids to hang out with and take care of. I just want life to turn around sometime soon. I think I see the light though, if this surgery is successful, despite the temporary colostomy bag it will be nice to finally put most of this behind me and work on my second life. My real life my better life. Looking forward to it.
I will let everybody know what happens on Thursday
Today I got up at 5 am got to my blood work and had that done then went for an ECG. ECG was to make sure they know how my heart works when monitoring my surgery. So that was done, went and took a nap, woke up ate a little bit and got ready to for the exciting part, talking to the surgeons and getting my date for the surgery to cure me. Right before I leave to walk over to the appointment, my oncologist calls me and lets me know they never got the CT scan I did in Boise last week. So I call Boise and ask them to send it again, they fax information saying nothing has really changed on the scan from last time about a month ago.
The mayo oncologist calls me back and says we are going to do a CT Scan here in 20 minutes. I run over there and wait and wait. I am impatient and pissed because I just did this a week ago to make today easier and now it just sucks.I get two bottles of iodized water to drink. I have a power port in so they don't have to go through my arms all the time when giving me medicine or drawing blood. In Boise it is very simple to get it used but here at the Mayo it is like this huge hassle. To take blood in the morning I just went through my arm. I should have gone through my arm again but I didn't for this. They called some lady over from somewhere else and she brought a cart that had the stuff to access my port. It was like a huge production and some of the nurses had no idea how to access a port. Radiology should know I would think. CT scans should have that at their hands pretty easy.
By the time I got into see the doctor the surgeons had no more time to talk to me I will have to wait until Thursday. The CT scan wasn't loaded by 5 pm and by that time everybody is done at the Mayo Clinic. It is stupid as hell. I believe if I would have got the go ahead from them I could have had surgery tomorrow and been heading home by Friday or Saturday, now I can't see them until Thursday and probably won't have surgery until Friday or Monday, which would mean I won't be home for at least another week. THIS TOWN SUCKS BALLS TOO, so it is no fun to hang out in, you can't go outside and without a car there is nothing to do.
My mom comes tomorrow which is OK I guess, hanging out with mom and dad can be OK. Hopefully, at least she is renting a car so I can go to a movie theatre or something if surgery doesn't happen. I just want this to happen. I am pretty nervous about surgery because putting me to sleep and hoping I wake up is a little scary. It is giving up a lot of control which I don't like. INSURANCE GOT APPROVED which is huge since it will save my parents retirement. I am tired of having to babysit doctors all the time. I make so many calls to make sure doctors are on track it is stupid, I even called the mayo clinic last wed to make sure they got the CT scan and I swear they told me they did. Of course they didn't. Bunch of BS.
Home life is calling me to get stuff done, I don't have time for all of this cancer bullshit. I have kids to hang out with and take care of. I just want life to turn around sometime soon. I think I see the light though, if this surgery is successful, despite the temporary colostomy bag it will be nice to finally put most of this behind me and work on my second life. My real life my better life. Looking forward to it.
I will let everybody know what happens on Thursday
Friday, January 29, 2010
LIfe and times
Still working on getting surgery approved. I guess it doesn't matter it is the only cure.
CT Scan will be on Feb 2nd if all is good then the Surgery is on. Keep your fingers crossed.
Got tax returns back which is huge can finally operate out of the hole.
Need to work out a more. I am around 205lbs right now which is good but my body is flabby and gross, difference from losing weight at the gym and losing weight through diet and illness.
My son Brennan likes Swords and play cars which makes me happy. He walks around kicking his brothers ass with a storm shadow sword. He likes to make sound effects too as he attacks which is just great. He crawls on the floor pushing his cars around making noises too. Just an awesome kid.
Got a puppy his name is Charlie. Well Lauren got a puppy. He is a very cute puggle Bull. This is where they mix a puggle (beagle and pug) with a bulldog. He has beagle ears, pug eyes (although not too puggish) and a bulldog mouth (which is awesome). He also has a pug body pretty much but he is pretty good. House breaking dogs sucks and living in a 2nd floor apartment is pretty retarded to have a dog but WTF. The kids love him and have a lot of fun
Hair is way thinner then before which actually creates less dandruff which is great. Actually don't have to use Head and Shoulders anymore. LOL.
Still have a lot of things I need to work out. I don't really know how to be happy anymore, not sure what makes me happy anymore. Contention I am good with, I can be content and I tell myself that is happiness but it is not and I know it. Ever since my marriage and all the compromise that goes into relationships I have forgotten how to be happy. Not depressed or sad just I would like a wider range of emotions when it comes to positive stuff.
Lily won her first basketball game last week. That is one more then all of last year. There are some tough teams. Our team last year looks really good. They went by school and most of the girls on Lily's team went to a different school then her so they couldn't be on the same team again. Even Jazzy (Lil's cousin) is on a different team. Her step dad is coaching which is good, he gets very into it. I wanted too coach again but not sure if I have the time this year to do it.
Next year I want to coach Mia's and let him continue to coach Lily's. Should be fun. Probably make me happy.
CT Scan will be on Feb 2nd if all is good then the Surgery is on. Keep your fingers crossed.
Got tax returns back which is huge can finally operate out of the hole.
Need to work out a more. I am around 205lbs right now which is good but my body is flabby and gross, difference from losing weight at the gym and losing weight through diet and illness.
My son Brennan likes Swords and play cars which makes me happy. He walks around kicking his brothers ass with a storm shadow sword. He likes to make sound effects too as he attacks which is just great. He crawls on the floor pushing his cars around making noises too. Just an awesome kid.
Got a puppy his name is Charlie. Well Lauren got a puppy. He is a very cute puggle Bull. This is where they mix a puggle (beagle and pug) with a bulldog. He has beagle ears, pug eyes (although not too puggish) and a bulldog mouth (which is awesome). He also has a pug body pretty much but he is pretty good. House breaking dogs sucks and living in a 2nd floor apartment is pretty retarded to have a dog but WTF. The kids love him and have a lot of fun
Hair is way thinner then before which actually creates less dandruff which is great. Actually don't have to use Head and Shoulders anymore. LOL.
Still have a lot of things I need to work out. I don't really know how to be happy anymore, not sure what makes me happy anymore. Contention I am good with, I can be content and I tell myself that is happiness but it is not and I know it. Ever since my marriage and all the compromise that goes into relationships I have forgotten how to be happy. Not depressed or sad just I would like a wider range of emotions when it comes to positive stuff.
Lily won her first basketball game last week. That is one more then all of last year. There are some tough teams. Our team last year looks really good. They went by school and most of the girls on Lily's team went to a different school then her so they couldn't be on the same team again. Even Jazzy (Lil's cousin) is on a different team. Her step dad is coaching which is good, he gets very into it. I wanted too coach again but not sure if I have the time this year to do it.
Next year I want to coach Mia's and let him continue to coach Lily's. Should be fun. Probably make me happy.
Friday, January 22, 2010
Some Relief
The biopsy came back yesterday and was not malignant on the thickening in my belly button. They still don't know what it is, so that is a little scary and the Sister Mary Joseph tumore can be benign but right now it is not even a tumor just a mass that is forming or unforming. Hopefully Chemo will kill it off. I did chemo yesterday as well sucked, feeling really nauseaus.
This all means I am still headed back to Minnesota for surgery, they are going to remove over 60 percent of my liver (it grows back), my gall bladder, this thing in my tummy, my infected Lymphnodes, and redisect my colon. Sounds like a lot of fun. All this in one surgery. I have never had surgery so I am a little nervous
A puppy is on its way. Been looking for puppies for 6 months and finally pulled the trigger to get one it will be here today. His name is Charlie and the kids are going to love him a lot. It should be very cool for them. He is a puggle bull and we will see how this goes, I swore I would never get another dog but then again life is shorter then you think and it is really for the kids. Can't wait to see their faces.
This all means I am still headed back to Minnesota for surgery, they are going to remove over 60 percent of my liver (it grows back), my gall bladder, this thing in my tummy, my infected Lymphnodes, and redisect my colon. Sounds like a lot of fun. All this in one surgery. I have never had surgery so I am a little nervous
A puppy is on its way. Been looking for puppies for 6 months and finally pulled the trigger to get one it will be here today. His name is Charlie and the kids are going to love him a lot. It should be very cool for them. He is a puggle bull and we will see how this goes, I swore I would never get another dog but then again life is shorter then you think and it is really for the kids. Can't wait to see their faces.
Wednesday, January 20, 2010
One step forward two steps back
I want to get this down before I have a mini breakdown. Got back from Mayo riding high thinking that everything sounded good. Surgery the week of February 8th then just recovery and I should be good to go. The only cure is surgery. They said one more round of chemo, then come back there they will do a ct scan and if all is good surgery is good and hopefully putting this nightmare behind me.
I got home Friday and Sat night I was having some discomfort in my stomach, I wouldn't even classify it as pain but if I pushed on it I would feel some pain and I think I could feel a small bump. Figure maybe some kind of hernia or something, no big deal. I would ask my doctor about it Monday. Went in for the last round of chemo for a month and told my doctor about my discomfort he felt my stomach after some talking about the mayo clinic and then ordered a biopsy right away. Can't be good, he thinks it is Sister Mary Joseph Nodule which can happen in Colon Cancer patients. If it is that (Which when I looked online was really bad, but usually in older people like 70's) then that means the cancer is spreading and the chemo isn't working, talked to Mayo clinic today and they said that it could cause problems with surgery. So tomorrow I find out the biopsy reports and we will see.
I feel like the Grim Reaper has a hold of me and he just won't let me go. It also always feels like I am chasing my tail with this thing. Every time I catch it and bit it, I feel nothing but pain.
I got home Friday and Sat night I was having some discomfort in my stomach, I wouldn't even classify it as pain but if I pushed on it I would feel some pain and I think I could feel a small bump. Figure maybe some kind of hernia or something, no big deal. I would ask my doctor about it Monday. Went in for the last round of chemo for a month and told my doctor about my discomfort he felt my stomach after some talking about the mayo clinic and then ordered a biopsy right away. Can't be good, he thinks it is Sister Mary Joseph Nodule which can happen in Colon Cancer patients. If it is that (Which when I looked online was really bad, but usually in older people like 70's) then that means the cancer is spreading and the chemo isn't working, talked to Mayo clinic today and they said that it could cause problems with surgery. So tomorrow I find out the biopsy reports and we will see.
I feel like the Grim Reaper has a hold of me and he just won't let me go. It also always feels like I am chasing my tail with this thing. Every time I catch it and bit it, I feel nothing but pain.
Thursday, January 14, 2010
Still Nothing
Finally found a place that serves Hamburgers and was pretty good. Had a horrible breakfast at some place that stated they were the best breakfast place downtown. Really limited without a car and stuck between subways and skyways. Hoping to come back to Doubletree or someplace with a pool and hot tub when I come back in February. The surgery should be the week of February 8th or 15th. Called my insurance company hope they cover it. Have to call my job and hope I am still employed with that insurance long enough to get it covered, lord knows I can't afford Cobra.
Got a approved for a grant of 500 dollars to help my next trip back, looking for more financial aid to help with lodging and air fare. I think that I can find it out there. I think my recovery at least when we discussed this surgery in Boise was like 2 - 3 days in the hospital then at home. Then back to Chemo. My concern is that the surgeon didn't have a lot of time to look over my stuff when he said he could do it. Not sure if he is overconfident or just lots of experience. Was told and just hoping for the latter. Will see what happens when I get back to Boise. Right now excited for the possibility that I can put this nightmare behind me as fast as possible and be there to raise my children.
Plane got cancelled from Rochester to ST Paul, so know instead of getting back to Boise at 1:30 we won't get back until 7:45. Sucks but just glad to b
e out of this dismal place. Just want to see my family, miss my friends and my kids a lot.
Got a approved for a grant of 500 dollars to help my next trip back, looking for more financial aid to help with lodging and air fare. I think that I can find it out there. I think my recovery at least when we discussed this surgery in Boise was like 2 - 3 days in the hospital then at home. Then back to Chemo. My concern is that the surgeon didn't have a lot of time to look over my stuff when he said he could do it. Not sure if he is overconfident or just lots of experience. Was told and just hoping for the latter. Will see what happens when I get back to Boise. Right now excited for the possibility that I can put this nightmare behind me as fast as possible and be there to raise my children.
Plane got cancelled from Rochester to ST Paul, so know instead of getting back to Boise at 1:30 we won't get back until 7:45. Sucks but just glad to b
e out of this dismal place. Just want to see my family, miss my friends and my kids a lot.
Tuesday, January 12, 2010
Mayo Clinic meet the surgeon
Got up this morning headed over to the Mayo Clinic got there at 715 and they made sure my insurance was all setup before they did anything else. After that I headed up to the ninth floor of the Gonda building. This place is enormous and beautiful, state of the art everything. Marble everywhere. Very cool buildings. I get up to the ninth floor and when I talk to the guy there he just says I drop off the paperwork and my medical records and then come back at 12:30. I need to head to some other building to get my blood drawn. I haven't eaten in over 13 hours and I am getting hungry. I have to wait to eat until after they draw my blood. Took forever to do that. The three people to my left are discussing their dialysis and their kidney transplants. After 30 minutes I finally got called to get my blood drawn. I showed them my awesome powerport card and they were happy to see it. they took some blood and told me there was no good breakfast places. The cafeteria (suck balls) was the best place.
After that my dad and I headed to the cafeteria, if I wasn't so starving it would have sucked but it was OK. I had scrambled eggs, bacon, sausage, potatoes and wheat toast. Good enough. Came back to the hotel and took a nap, I had woken up at 5 am so it was good. What was bad was my dad farts and snores a lot while he sleeps. Not so good
Got up at 11:30 and got ready and headed back to the Mayo Clinic to meet the oncologist. Got there at 12:15 and appointment was at 12:30 but didn't get in until 1:45 then waited till 2:15 for the doctor to finally show up. She was very nice, maybe a Nordic accent of some kind I didn't' ask just wanted to get through this all. She said she looked at all my stuff and that surgery is the only option. there is no cure there is nothing else just, everything done in Boise is what can be done. She wanted to ask the Liver oncology surgeon what he thought and said he would be in there. Now this was bad news to me because I was told in Boise because the nodules were so numerous they couldn't fix my liver. This is why I was there. I asked about micro spheres but she said that wouldn't work in this case. More for larger nodules. So I was pretty bummed at this point, figured nothing could be done just chemo until either they shrink enough (hopefully) so that surgery becomes an option again or die.
About 45 minutes later the surgeon and his team of 2 dudes and a woman came in. He said he could do the operation, would lose the whole right side of my liver including my gall bladder because most of the nodules were on that side. Then he would dissect the left side. Losing a little over 60 percent of my current liver. This would mean the redisection of my lower colon as well, this means a temporary bag again for a couple weeks. But if this is all successful followed by some re chemo then my cancer is gone, cured. Just checkups to make sure. Figure I might be all good by August then. Sounds good to me. I talked to the Colon surgeon as well and he just told me the same thing they told me in Boise a couple months ago.
I have to stop taking Avistan which is one of the chemo drugs and start taking urbatux which will cause a rash on my face. (SWEET) What is funny is my mom recommended this when they started the Avistan. This seems like if I didn't do this I would probably be dead in a couple years so at least there is hope lets just hope the chemo keeps everything at bay. I have to have chemo for 5 more weeks then 4 weeks of nothing. Then come back here to Rochester for a CT scan and the surgery. (Now I have to get my insurance to cover it)
Fingers Crossed the surgeon here can do it. Will talk to Boise not happy about all this at all. This should all be possible there but their lack of confidence in their surgeon is why it can't happen. Is there added risk doing it. Need some things to come together but best news I have had in a while. Two more days in Rochester (the worst city in America to do anything), with my dad and nothing planned. The other night at the mall there was 5 tables full of nerds playing magic the gathering made me laugh out loud. My dad thought they were playing poker but I saw the box for Magic and some dice. Man that was good humor.
After that my dad and I headed to the cafeteria, if I wasn't so starving it would have sucked but it was OK. I had scrambled eggs, bacon, sausage, potatoes and wheat toast. Good enough. Came back to the hotel and took a nap, I had woken up at 5 am so it was good. What was bad was my dad farts and snores a lot while he sleeps. Not so good
Got up at 11:30 and got ready and headed back to the Mayo Clinic to meet the oncologist. Got there at 12:15 and appointment was at 12:30 but didn't get in until 1:45 then waited till 2:15 for the doctor to finally show up. She was very nice, maybe a Nordic accent of some kind I didn't' ask just wanted to get through this all. She said she looked at all my stuff and that surgery is the only option. there is no cure there is nothing else just, everything done in Boise is what can be done. She wanted to ask the Liver oncology surgeon what he thought and said he would be in there. Now this was bad news to me because I was told in Boise because the nodules were so numerous they couldn't fix my liver. This is why I was there. I asked about micro spheres but she said that wouldn't work in this case. More for larger nodules. So I was pretty bummed at this point, figured nothing could be done just chemo until either they shrink enough (hopefully) so that surgery becomes an option again or die.
About 45 minutes later the surgeon and his team of 2 dudes and a woman came in. He said he could do the operation, would lose the whole right side of my liver including my gall bladder because most of the nodules were on that side. Then he would dissect the left side. Losing a little over 60 percent of my current liver. This would mean the redisection of my lower colon as well, this means a temporary bag again for a couple weeks. But if this is all successful followed by some re chemo then my cancer is gone, cured. Just checkups to make sure. Figure I might be all good by August then. Sounds good to me. I talked to the Colon surgeon as well and he just told me the same thing they told me in Boise a couple months ago.
I have to stop taking Avistan which is one of the chemo drugs and start taking urbatux which will cause a rash on my face. (SWEET) What is funny is my mom recommended this when they started the Avistan. This seems like if I didn't do this I would probably be dead in a couple years so at least there is hope lets just hope the chemo keeps everything at bay. I have to have chemo for 5 more weeks then 4 weeks of nothing. Then come back here to Rochester for a CT scan and the surgery. (Now I have to get my insurance to cover it)
Fingers Crossed the surgeon here can do it. Will talk to Boise not happy about all this at all. This should all be possible there but their lack of confidence in their surgeon is why it can't happen. Is there added risk doing it. Need some things to come together but best news I have had in a while. Two more days in Rochester (the worst city in America to do anything), with my dad and nothing planned. The other night at the mall there was 5 tables full of nerds playing magic the gathering made me laugh out loud. My dad thought they were playing poker but I saw the box for Magic and some dice. Man that was good humor.
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