Sept 2
Carl had a great night and yesterday was fine he was up and about a bit and visiting and telling stories with family. I was in pain, my injured knee is really painful and I'm feeling guilty about it. I'll need to get to the Dr. I though it was improving so being the "man" decided I could wait it out, not happening. Today is the last day before kids start back to school. With family here I can be there the next two days then Carl has Dr stuff on Thursday so I'll take that day off.
Monday, September 2, 2013
Sunday, September 1, 2013
September 1st
11:45
Well Carl slept well and everyone was trying to feed him high protein this morning so that was good. My knee is still killing me. Had a long telephone conversation with my ex-wife, our kids, Carl, she likes him a lot. Kathy left for the airport this morning could only take off for the couple days. the sisters and parents are still here. they have been talking a lot and enjoying being together. I'll post a pic if I can figure out how to do it.
I have help for 4 days here so am taking advantage of that. Ill go to work Tuesday and Wed then Dr stuff all day Thursday and the family fly home. They are en DC or S. Cal. so long way off. Will have to get anal about all this then but now enjoying the help.
Cat was left in last night, she hid under the bed I think. I had an ice bag on my knee when I fell asleep. this morning it was empty and had claw holes all over. Wet carpet. Worried about her playing with Carl's catheter bag, can't really hurt him but the thought of stale pee all over the carpet is not exciting. Her playing with the medical supplies is not cool either. Moving the food bowl outside now. weather is good and she likes being out in warm weather anyway so a wish come true. Puma is a good cat but not a good situation for her right now. Kula the dog is loving it. He has had more people walking him then ever. He does live outside but visits in and is just a happy camper. we keep him form the living room/bedroom but actually he doesn't want Carl now anyway he has all these others.
11:45
Well Carl slept well and everyone was trying to feed him high protein this morning so that was good. My knee is still killing me. Had a long telephone conversation with my ex-wife, our kids, Carl, she likes him a lot. Kathy left for the airport this morning could only take off for the couple days. the sisters and parents are still here. they have been talking a lot and enjoying being together. I'll post a pic if I can figure out how to do it.
I have help for 4 days here so am taking advantage of that. Ill go to work Tuesday and Wed then Dr stuff all day Thursday and the family fly home. They are en DC or S. Cal. so long way off. Will have to get anal about all this then but now enjoying the help.
Cat was left in last night, she hid under the bed I think. I had an ice bag on my knee when I fell asleep. this morning it was empty and had claw holes all over. Wet carpet. Worried about her playing with Carl's catheter bag, can't really hurt him but the thought of stale pee all over the carpet is not exciting. Her playing with the medical supplies is not cool either. Moving the food bowl outside now. weather is good and she likes being out in warm weather anyway so a wish come true. Puma is a good cat but not a good situation for her right now. Kula the dog is loving it. He has had more people walking him then ever. He does live outside but visits in and is just a happy camper. we keep him form the living room/bedroom but actually he doesn't want Carl now anyway he has all these others.
8/31
Actually it is Sept. 1st.
Carl and his family have been down talking and reminiscing. It is now 12.08 and he just came up and gave me a kiss and was really pleased. I've been sitting here playing solitaire which is not a bad thing. Quiet time of my own and as much as I like the family I can't keep up with their ASL. They are so nice to include me by slowing down and finger spelling stuff but it is time they need now so here I am.. the kiss must mean things are winding down. Did have a friend message me about all this and ask kind and terminal. Had to say "Pancreatic and probably". Not easy but................................. crap. I'm going to bed.
Actually it is Sept. 1st.
Carl and his family have been down talking and reminiscing. It is now 12.08 and he just came up and gave me a kiss and was really pleased. I've been sitting here playing solitaire which is not a bad thing. Quiet time of my own and as much as I like the family I can't keep up with their ASL. They are so nice to include me by slowing down and finger spelling stuff but it is time they need now so here I am.. the kiss must mean things are winding down. Did have a friend message me about all this and ask kind and terminal. Had to say "Pancreatic and probably". Not easy but................................. crap. I'm going to bed.
Saturday, August 31, 2013
8/28 Still talking about last Thursday but it is Saturday. When I got home Wed. night there was a letter from the doctor here in town saying Carl was ok, Nothing on the CaT scan he probably just had IBS. that was it, no referral no nothing a basic form letter form his office. I was so pissed off, the same CT scan done Wednesday at OHSU confirmed the cancer and another done Thursday morning of his chest indicated no spread of the cancer (a good thing). Yea lawyers have been mentioned not sure that is going to happen but christ we were going to these guys for 6 months telling them it was more then IBS. and there were symtoms of something else. Crap.
His family is here and everyone is helping, it is really great having them especially getting this started. Carl has those tubes and we were shown how to take care of them in the Hospital but really cool to not have to start right away by myself.
8/30
Yesterday was good and bad. Carl got to come home but the big meeting set for 10:45 to discuss surgery, get the level of the cancer and determine the care plan did not happen. I was really pissed. The Head resident, a nice guy apologized but did not help my mood much. Carl's sister got into it too. Reading between the lines I think it is the surgeon who is not available. No matter because we can't do much about it. Carl likes these guys, he likes almost everyone but feels comfortable with them so no moving hospitals. So after that I went to work for part of the day to get ready for kids on Tuesday, got that done sort of. My teaching partner did a whole lot of work to get us ready. We share a case load of about 80 kids, she does reading and writing I do the maths, algebra and this year consumer math. plus study skills classes. The family texted me about 3:45 that they were releasing Carl in an hour so I took off. My school is an hour or more away form the Hospital (on a good traffic day). got there at five, family left and it was almost 7:30 before the released Carl. I did not get lost driving home. we stopped for some snacks, cashews and jerky.
Today Family Day
I'm exhausted and more sore knee is killing me. Carl's sister went to visit an old friend in Vancouver with her Partner K. I took off to fill prescriptions since we got home after they closed. Turns out a couple were rare and I needed two stores and a couple hours calling by the Pharmacy to no avail on one drug. So delivered the ones I got and went in the other direction Newberg and they did not have the last one either but could order it. In Mac they could not even order. So about 2 I was done with drug runs. tired and icing my knee. It is feeling better but I'm way limping. Don't want to whine downstairs though with Cancer patient on a bed down there sore knees are sort of secondary. Things are going good with Carl, Eating good but I'm betting he did not get the protein recommended by the nutritionist. Most of his family is Vegan or vegetarian so I need to make sure he gets protein. Dr said no to vegetarian diet with vegetable protein. Just not enough to build him quickly back to where he needs to be if surgery is an option.
I should mention that my kids, ex wife and sister have all been in contact and my sister in Vancouver was over to see Carl and her husband as well. The rest of my clan is too far to get here so will be later in the fall before the see us. Grand baby is in Montana, well mom is and soon to be grandson is kicking up a storm lately.
Well enough and I feel a bit better. This does relieve some of the pressure of not being able to say a lot to Carl or his parents. they are great people I just don't have the language well enough. Well I'm off cooking marinara sauce and realized that it is 8:40 and no one has eaten. that is the funny thing the family are all night owls. The sisters and Mom are buy the spaghetti. Lost??
His family is here and everyone is helping, it is really great having them especially getting this started. Carl has those tubes and we were shown how to take care of them in the Hospital but really cool to not have to start right away by myself.
8/30
Yesterday was good and bad. Carl got to come home but the big meeting set for 10:45 to discuss surgery, get the level of the cancer and determine the care plan did not happen. I was really pissed. The Head resident, a nice guy apologized but did not help my mood much. Carl's sister got into it too. Reading between the lines I think it is the surgeon who is not available. No matter because we can't do much about it. Carl likes these guys, he likes almost everyone but feels comfortable with them so no moving hospitals. So after that I went to work for part of the day to get ready for kids on Tuesday, got that done sort of. My teaching partner did a whole lot of work to get us ready. We share a case load of about 80 kids, she does reading and writing I do the maths, algebra and this year consumer math. plus study skills classes. The family texted me about 3:45 that they were releasing Carl in an hour so I took off. My school is an hour or more away form the Hospital (on a good traffic day). got there at five, family left and it was almost 7:30 before the released Carl. I did not get lost driving home. we stopped for some snacks, cashews and jerky.
Today Family Day
I'm exhausted and more sore knee is killing me. Carl's sister went to visit an old friend in Vancouver with her Partner K. I took off to fill prescriptions since we got home after they closed. Turns out a couple were rare and I needed two stores and a couple hours calling by the Pharmacy to no avail on one drug. So delivered the ones I got and went in the other direction Newberg and they did not have the last one either but could order it. In Mac they could not even order. So about 2 I was done with drug runs. tired and icing my knee. It is feeling better but I'm way limping. Don't want to whine downstairs though with Cancer patient on a bed down there sore knees are sort of secondary. Things are going good with Carl, Eating good but I'm betting he did not get the protein recommended by the nutritionist. Most of his family is Vegan or vegetarian so I need to make sure he gets protein. Dr said no to vegetarian diet with vegetable protein. Just not enough to build him quickly back to where he needs to be if surgery is an option.
I should mention that my kids, ex wife and sister have all been in contact and my sister in Vancouver was over to see Carl and her husband as well. The rest of my clan is too far to get here so will be later in the fall before the see us. Grand baby is in Montana, well mom is and soon to be grandson is kicking up a storm lately.
Well enough and I feel a bit better. This does relieve some of the pressure of not being able to say a lot to Carl or his parents. they are great people I just don't have the language well enough. Well I'm off cooking marinara sauce and realized that it is 8:40 and no one has eaten. that is the funny thing the family are all night owls. The sisters and Mom are buy the spaghetti. Lost??
Just to get started, some background. My partner and I are both educators in somewhat individual fields. I'm a special education teacher starting my 40th year in education this year. My partner is an ASL (American Sign Language) instructor at the college level with 30 years experience. We met in Hawaii 8 years agot the 20th of this month. Started living together 8 years ago next Feb28th. we've both been married and have 5 kids between us. Me ex wife and kids think he is great and Carl is an honorary grandpa to my first grandchild due in Oct.
More recently Carl has been sick for several months. Not enough to stop work but pretty tired and was losing weight. He went to the Dr. in late March and was diagnosed with Irritable Bowel Syndrome (IBS). but the Dr. really never told us what to do so we got on the web and started following diets remedies and back to different Doctors because it just seemed like more. Colonoscopies (yes plural) ultrasounds were done and he always got negative results and no treatment plan. Meanwhile his stomach continued to cramp and he was in the bathroom every two hours or so. At night my moving in bed would cause pain. He said he felt like a ball of water was there and movement made it hurt. Back to the Drs.
In August we tried his Dr. again and continued to explain what the symptoms were. Oh did I mention Carl is Deaf? I would go to sign and ask question at most appointments. I'm not an interpreter. Anyway he finally referred us to another specialist who did another colonoscopy (negative) and then a CT scan (the second of these) but with barium this time. That was last Friday August.23rd. Carl was not feeling well over the weekend and his urine (his pee don't think I want to get to formal here) was getting darker and I encouraged him to drink more fluids.
8/26/13
On Monday I went off to work for the first day of the school year. Carl had four more weeks of summer break. He called (text) me about 12:30 to say he was going to the Dr and that his pee was like Coffee. this was his GP and she took some samples and had them done in 20 minutes. She sent him to the ER. He texted me again and asked me to meet him there. When I got there the ER had taken more labs and done an ultrasound. His barium levels were still high form Friday, not a good thing. About 7:30 they transported him to OHSU, I went home knowing they were not going to get much done overnight.
8/27
After calling in to work I headed to the hospital. I met Carl being wheeled down to ultrasound and went with him. we watched, and obviously could not tell a a thing unless the name of the organ was typed on the screen. they were marking and measuring object(s) on the screen. The operator was a trainee but the head guy came in took just a few more pictures and off we went. Mostly it is sitting and waiting for someone to come and tell us something. I went to get lunch and Carl fell asleep. When I got back he had been given the news he had cancer. Pancreatic Cancer. Shocked doesn't do it. I was all prepared for gall bladder surgery since that was one of the organ on the ultra sound. By then though Carl had looked it up on the internet and not a good cancer to get. General rule 5% survival rate in 5 years. that afternoon they took him in for surgery, not cancer surgery, but to remove some blockages of the bile ducts and put a shunt in to drain the extra fluid that had back up, Yes there was a water-ball, well liquid-ball, kinda ugly looking stuff. His pain was greatly relieved. that was Tuesday, He slept well. I got lost driving home.
8/28
Carl had contacted his family and I went to work Wed morning do to a special ed in-service I though I should attend and I needed to talk to my bosses, yes plural. Sped director and Principal were both great. Back to OHSU. BTW they got an interpreter for us. Really nice especially when big groups were there or specialist had to report. I just can't keep up with that. Too much finger-spelling. I did get to talk to one Dr who had found the tumor on the utrasound (officially found, the technicians really found it). He came in and was pretty low as were we. He would not give a clear answer to prognosis etc but I did push, I did not sign the answers to Carl. At that point he did say the cancer had involved some blood vessels and areas around the pancreas. I then told him we had looked up the diagnosis and knew prognosis was poor and was he telling me it was worse then the internet said, answer "yes". He left and I debated with myself for a while but finally told Carl what he had said. we hugged and basically digested the info.. I left the Hospital a little and headed home about 8 nearly gettting lost again. Plans were in motion and Carl's Family, Mom, Dad, one sister on Thursday and the other sister on Saturday. She's downstairs as I type this today.
That trip is where writing this came to mind. I kept thinking about things we had planned. I'm retiring in two years and Carl was going to the guide on a trip to Europe. He was born in the Netherlands, speaks and writes dutch and understand written German and French. I of course am a typical american and understand English. Well a bit of sign so a little bi-lingual. So tears came as I realized they might never happen. don't know if this was feeling sorry for myself, Carl or both of us. I can still travel even if he won't be there but would I could I? don't know. Right now in my thoughts now, no, it's done and its sad nearly to tears to type this, but also a relief to talk even to even anonymous people how I feel. It is hard sometimes especially now with his parents and sister here and I can't follow their sign and of course then can talk to me, conundrum maybe?
More recently Carl has been sick for several months. Not enough to stop work but pretty tired and was losing weight. He went to the Dr. in late March and was diagnosed with Irritable Bowel Syndrome (IBS). but the Dr. really never told us what to do so we got on the web and started following diets remedies and back to different Doctors because it just seemed like more. Colonoscopies (yes plural) ultrasounds were done and he always got negative results and no treatment plan. Meanwhile his stomach continued to cramp and he was in the bathroom every two hours or so. At night my moving in bed would cause pain. He said he felt like a ball of water was there and movement made it hurt. Back to the Drs.
In August we tried his Dr. again and continued to explain what the symptoms were. Oh did I mention Carl is Deaf? I would go to sign and ask question at most appointments. I'm not an interpreter. Anyway he finally referred us to another specialist who did another colonoscopy (negative) and then a CT scan (the second of these) but with barium this time. That was last Friday August.23rd. Carl was not feeling well over the weekend and his urine (his pee don't think I want to get to formal here) was getting darker and I encouraged him to drink more fluids.
8/26/13
On Monday I went off to work for the first day of the school year. Carl had four more weeks of summer break. He called (text) me about 12:30 to say he was going to the Dr and that his pee was like Coffee. this was his GP and she took some samples and had them done in 20 minutes. She sent him to the ER. He texted me again and asked me to meet him there. When I got there the ER had taken more labs and done an ultrasound. His barium levels were still high form Friday, not a good thing. About 7:30 they transported him to OHSU, I went home knowing they were not going to get much done overnight.
8/27
After calling in to work I headed to the hospital. I met Carl being wheeled down to ultrasound and went with him. we watched, and obviously could not tell a a thing unless the name of the organ was typed on the screen. they were marking and measuring object(s) on the screen. The operator was a trainee but the head guy came in took just a few more pictures and off we went. Mostly it is sitting and waiting for someone to come and tell us something. I went to get lunch and Carl fell asleep. When I got back he had been given the news he had cancer. Pancreatic Cancer. Shocked doesn't do it. I was all prepared for gall bladder surgery since that was one of the organ on the ultra sound. By then though Carl had looked it up on the internet and not a good cancer to get. General rule 5% survival rate in 5 years. that afternoon they took him in for surgery, not cancer surgery, but to remove some blockages of the bile ducts and put a shunt in to drain the extra fluid that had back up, Yes there was a water-ball, well liquid-ball, kinda ugly looking stuff. His pain was greatly relieved. that was Tuesday, He slept well. I got lost driving home.
8/28
Carl had contacted his family and I went to work Wed morning do to a special ed in-service I though I should attend and I needed to talk to my bosses, yes plural. Sped director and Principal were both great. Back to OHSU. BTW they got an interpreter for us. Really nice especially when big groups were there or specialist had to report. I just can't keep up with that. Too much finger-spelling. I did get to talk to one Dr who had found the tumor on the utrasound (officially found, the technicians really found it). He came in and was pretty low as were we. He would not give a clear answer to prognosis etc but I did push, I did not sign the answers to Carl. At that point he did say the cancer had involved some blood vessels and areas around the pancreas. I then told him we had looked up the diagnosis and knew prognosis was poor and was he telling me it was worse then the internet said, answer "yes". He left and I debated with myself for a while but finally told Carl what he had said. we hugged and basically digested the info.. I left the Hospital a little and headed home about 8 nearly gettting lost again. Plans were in motion and Carl's Family, Mom, Dad, one sister on Thursday and the other sister on Saturday. She's downstairs as I type this today.
That trip is where writing this came to mind. I kept thinking about things we had planned. I'm retiring in two years and Carl was going to the guide on a trip to Europe. He was born in the Netherlands, speaks and writes dutch and understand written German and French. I of course am a typical american and understand English. Well a bit of sign so a little bi-lingual. So tears came as I realized they might never happen. don't know if this was feeling sorry for myself, Carl or both of us. I can still travel even if he won't be there but would I could I? don't know. Right now in my thoughts now, no, it's done and its sad nearly to tears to type this, but also a relief to talk even to even anonymous people how I feel. It is hard sometimes especially now with his parents and sister here and I can't follow their sign and of course then can talk to me, conundrum maybe?
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