I have a pain in my upper left thigh that seems to be in the muscle. It really hurts today. I think it is from the chemo because sometimes my right thigh hurts, too. I think I'll just plan to stay in today. I don't want to risk falling on any snow or ice. So, no radio show today. We're keeping any eye on this for a while. I may have to have another scan to see what it might be. So many pains come and go, but this one is starting to hang on.
I did bowl on Friday night. I had steroids the day before so the pain in my leg was much less and I took some Ibuprofen. This is a "No-Tap" league, so if you hit nine pins on the first ball, it counts as a strike. I bowled 107, 131, and 151. My average is 130 and handicap is 50. We lost three of four games. If this leg doesn't get better, I may have to give the bowling up. My team member Peggy Lindsay bowled a 218 in the last game, and it wasn't all nine-pin strikes. Way to go Peg!
Guess that's it for today. As always, thanks everyone for your prayers and kind thoughts. My eternal thanks to my husband Robert who is so good to me. And some special love out to my cousin Barbara in Nebraska who just had surgery on her lymph nodes.
Just up here in Colorado, nursing a sore leg.
Sincerely, Caroline
Sunday, February 25, 2007
Friday, February 23, 2007
Steroids - They're Not Just for Athletes Anymore
Apologies again for not posting more often, but I felt pretty crummy this past week - mostly fatigue and pain, mostly in my left thigh which made it hard to walk. I've also had a cold, queasiness/nausea, insomnia, digestive issues, headaches, and chemo brain which makes it hard to concentrate or focus sometimes. That in turn makes me frustrated and irritable, but I tell myself to take it slower. I had chemo yesterday, and I got the attendant steroids beforehand which has made the pain in my leg better and given me more energy. So I'm feeling better today just in time for my first bowling night in the new league. Both Dr. Bergen and Dr. Oldroyd have told me it's okay to bowl.
I took some Provigil last Monday afternoon to help with fatigue and I didn't got to sleep until 7am the next morning. (I watched three movies, two HBO specials on prostitutes, and did three Kakuro puzzles.) I had an appointment Tuesday with the radiation oncologist, so I got about one hour of sleep the night before, but lately I've been sleeping very soundly, even with the steroids yesterday. Dr. Oldroyd said my last bone scan showed no more cancer in my bones, so we are very happy about that.
CHEMO TREATMENTS
I had chemo a week ago today and then again yesterday. Last Friday, my blood work was pretty good, hemoglobin at 12, but two liver enzymes a bit elevated. I only had Gemzar last week. CA19-9 tumor marker back up to 2900+. last week, but down to 2346 this week. Yesterday, I had Gemzar and Avastin, plus an Aranesp shot - my hemoglobin fell to 11.3. Only one liver enzyme was elevated. My weight and blood pressure have been good at all check-ups.
Last Friday, we went to see Norbitt on the way home in Montrose. We called Art & Brenda Fox and they met us at the theater. We went to Garlic Mike's in Montrose afterwards and it was very good. Norbitt was pretty good, and I love Eddie Murphy movies where he does multiple rolls. Coming to American and The Nutty Professor were better in my opinion. (I laughed so hard at the opening scene of The Nutty Professor that I sucked down a Milk-Dud and I thought Robert was going to have to do the Heimlich on me.) If you have seen the previews for Norbitt, you know that Norbitt's wife is a very big girl. She often accuses Norbitt of moving the seat forward in her car as she honks the horn with her boobs. Last Saturday, long-legged Robert drove my car after short-legged me. He accused me of moving the seat up, imitating Norbitt's wife. I replied, "Okay, Robert, let's see you honk the horn with those man titties."
I don't have to have chemo next week. Dr. Bergen wants to give me a break from Gemzar. I will continue to take Xeloda as long as my feet and hands aren't swelling too much.
Every time we go to Grand Junction, we usually see at least one bald eagle along the way either along the river in Ridgway or up near Colona on the Ouray-Montrose county line. Last week we saw a bunch prairie dogs up near Grand Junction. Last Saturday, we went to Ridgway to the pharmacy and saw a sheep sleeping on a picnic table at a house near Ridgway. The ground was full of snow and I'm sure the the brown table was warm from the sun.
MANAGING CHEMO SIDE EFFECTS
Chemo Brain - I asked Dr. Bergen last Friday if there really was such a thing as Chemo Brain. He said yes there is, and it is his fault for giving it to me. He thought there might be a clinical trial I could get into with regard to chemo brain, but it was closed. He said I could take ginko if I wanted. I took one last Saturday, but it didn't seem to do anything. Then I noticed that bottle was about 3 years beyond it's expiration date. I got a new bottle and will try again next time it comes up.
Fatigue - I mentioned before the Provigil which I will probably try again at half dose and only take in the morning. There's a clinical trial to test Provigil in helping with fatigue from chemo, but I had already taken some samples that I got earlier in the year, so I am not eligible for that trial. But any of you cancer patients out there suffering from chemo fatigue, ask your oncologist about it or go online to clinicaltrials.gov.
Pain/Headaches - I've been taking Ibuprofen which seems to help, but I can only take so much of it. I also take Oxycodone which can make you extremely constipated. I'd forgotten to take the stool softeners with it, and I'll never do that again. (If we can put a man on the moon, why can't we make a toilet that accommodates the largest human turd?) When I have chemo and get steroids, it reduces the pain I have in various places - thighs, shoulders, abdomen, headache, back of neck.
Queasiness/Nausea - Mostly, I am just queasy, but sometimes it feels like it's going to get worse. I've been taking Kytril. I also take Prilosec which seems to help as well.
We rented two movies at Blockbuster and watched Babel the other night which was quite good. I watched most of Half Nelson and Ryan Gosling is very deserving of his best actor nomination. Of course, we'll be watching the Oscars on Sunday night. I am hooked on American Idol. The girls are way better than the guys this year. I think Lakisha will take it - what a voice.
I sometimes feel like two different people - the girl on steroids and the woman who can hardly get out of bed. I asked Robert if he felt like he was married to two different women, and he replied, "At least."
Just up here in Colorado, both of me still enjoying life.
Sincerely, Caroline
P.S. To stream my radio show on the internet, go to kara.fast-serv.com:9262/listen.pls. I do not know how to use this yet, but I'll find out. I should be doing my show this Sunday from 1:00 - 4:00 pm Mountain Time. Sometimes I run a few minutes late to the station.
I took some Provigil last Monday afternoon to help with fatigue and I didn't got to sleep until 7am the next morning. (I watched three movies, two HBO specials on prostitutes, and did three Kakuro puzzles.) I had an appointment Tuesday with the radiation oncologist, so I got about one hour of sleep the night before, but lately I've been sleeping very soundly, even with the steroids yesterday. Dr. Oldroyd said my last bone scan showed no more cancer in my bones, so we are very happy about that.
CHEMO TREATMENTS
I had chemo a week ago today and then again yesterday. Last Friday, my blood work was pretty good, hemoglobin at 12, but two liver enzymes a bit elevated. I only had Gemzar last week. CA19-9 tumor marker back up to 2900+. last week, but down to 2346 this week. Yesterday, I had Gemzar and Avastin, plus an Aranesp shot - my hemoglobin fell to 11.3. Only one liver enzyme was elevated. My weight and blood pressure have been good at all check-ups.
Last Friday, we went to see Norbitt on the way home in Montrose. We called Art & Brenda Fox and they met us at the theater. We went to Garlic Mike's in Montrose afterwards and it was very good. Norbitt was pretty good, and I love Eddie Murphy movies where he does multiple rolls. Coming to American and The Nutty Professor were better in my opinion. (I laughed so hard at the opening scene of The Nutty Professor that I sucked down a Milk-Dud and I thought Robert was going to have to do the Heimlich on me.) If you have seen the previews for Norbitt, you know that Norbitt's wife is a very big girl. She often accuses Norbitt of moving the seat forward in her car as she honks the horn with her boobs. Last Saturday, long-legged Robert drove my car after short-legged me. He accused me of moving the seat up, imitating Norbitt's wife. I replied, "Okay, Robert, let's see you honk the horn with those man titties."
I don't have to have chemo next week. Dr. Bergen wants to give me a break from Gemzar. I will continue to take Xeloda as long as my feet and hands aren't swelling too much.
Every time we go to Grand Junction, we usually see at least one bald eagle along the way either along the river in Ridgway or up near Colona on the Ouray-Montrose county line. Last week we saw a bunch prairie dogs up near Grand Junction. Last Saturday, we went to Ridgway to the pharmacy and saw a sheep sleeping on a picnic table at a house near Ridgway. The ground was full of snow and I'm sure the the brown table was warm from the sun.
MANAGING CHEMO SIDE EFFECTS
Chemo Brain - I asked Dr. Bergen last Friday if there really was such a thing as Chemo Brain. He said yes there is, and it is his fault for giving it to me. He thought there might be a clinical trial I could get into with regard to chemo brain, but it was closed. He said I could take ginko if I wanted. I took one last Saturday, but it didn't seem to do anything. Then I noticed that bottle was about 3 years beyond it's expiration date. I got a new bottle and will try again next time it comes up.
Fatigue - I mentioned before the Provigil which I will probably try again at half dose and only take in the morning. There's a clinical trial to test Provigil in helping with fatigue from chemo, but I had already taken some samples that I got earlier in the year, so I am not eligible for that trial. But any of you cancer patients out there suffering from chemo fatigue, ask your oncologist about it or go online to clinicaltrials.gov.
Pain/Headaches - I've been taking Ibuprofen which seems to help, but I can only take so much of it. I also take Oxycodone which can make you extremely constipated. I'd forgotten to take the stool softeners with it, and I'll never do that again. (If we can put a man on the moon, why can't we make a toilet that accommodates the largest human turd?) When I have chemo and get steroids, it reduces the pain I have in various places - thighs, shoulders, abdomen, headache, back of neck.
Queasiness/Nausea - Mostly, I am just queasy, but sometimes it feels like it's going to get worse. I've been taking Kytril. I also take Prilosec which seems to help as well.
We rented two movies at Blockbuster and watched Babel the other night which was quite good. I watched most of Half Nelson and Ryan Gosling is very deserving of his best actor nomination. Of course, we'll be watching the Oscars on Sunday night. I am hooked on American Idol. The girls are way better than the guys this year. I think Lakisha will take it - what a voice.
I sometimes feel like two different people - the girl on steroids and the woman who can hardly get out of bed. I asked Robert if he felt like he was married to two different women, and he replied, "At least."
Just up here in Colorado, both of me still enjoying life.
Sincerely, Caroline
P.S. To stream my radio show on the internet, go to kara.fast-serv.com:9262/listen.pls. I do not know how to use this yet, but I'll find out. I should be doing my show this Sunday from 1:00 - 4:00 pm Mountain Time. Sometimes I run a few minutes late to the station.
Thursday, February 15, 2007
Good News
The oncology nurse called today and said my bone scan was okay. My tumor marker was down to 2,361. It was 2900+ on 1-18-07. Normal is 0 -37, but at least it is trending downward. By the way, I did have a chest X-ray last week to see if I had fluid build-up, but none was detected.
I have chemo tomorrow afternoon in Grand Junction. I only have to have Gemzar. We hope to go bowling after chemo if I'm feeling up to it. We may take in a movie afterwards or instead of bowling.
My energy level is better today. Not normal, but better than it's been. I think having three drugs infused last week plus going back on Xeloda did me in this week.
My bowling team has its first game on Friday, February 23rd. We lost our only male member, Mike Wage, who has been replaced by a woman named Beth. I think we are the only all female team in this league. We're truly "The Harem" this time around.
Thanks again to so many people who have sent thoughts, prayers, good wishes, card, e-mails, phone calls, etc. I really appreciate your support.
Just up here in Colorado getting psyched for the next round of bowling.
Sincerely, Caroline
I have chemo tomorrow afternoon in Grand Junction. I only have to have Gemzar. We hope to go bowling after chemo if I'm feeling up to it. We may take in a movie afterwards or instead of bowling.
My energy level is better today. Not normal, but better than it's been. I think having three drugs infused last week plus going back on Xeloda did me in this week.
My bowling team has its first game on Friday, February 23rd. We lost our only male member, Mike Wage, who has been replaced by a woman named Beth. I think we are the only all female team in this league. We're truly "The Harem" this time around.
Thanks again to so many people who have sent thoughts, prayers, good wishes, card, e-mails, phone calls, etc. I really appreciate your support.
Just up here in Colorado getting psyched for the next round of bowling.
Sincerely, Caroline
Wednesday, February 14, 2007
Happy Valentine's Day!
Sorry I haven't posted in a while. I have been feeling rather crummy lately, with the exception of last weekend when I had "steroid energy" from my chemo last Friday. I worked in the store on Saturday and part of Sunday. Robert said I was driving him crazy. "Let's move these books over here. Let's re-do this window. Let's move these books to the front of the store. Let's get this stuff out from behind the counter." And so on. He'd been chopping wood, shoveling the deck, helping a friend move her artwork into the old Sandman space, and he was tired. So I said, okay, just move this one set of books and I'll be happy.
I did my radio show on Sunday and have info on how to "stream" it on your computer. I hope to put that in the "dashboard" of this blog, but I want to test it out first.
Okay, so let me catch things up. We got home from Tucson a week ago yesterday on Feb. 6th. I've still been fighting a cold or sinus infection, plus I have been really tired. A pain started in my left shoulder a week ago today. I would take one dose of Ibuprofen during the day, but my oncologist has warned me not to take too much Ibuprofen. So if I just lay still in bed after the Ibuprofen wore off, I wouldn't feel any pain. I've been taking Oxycodone at bedtime. The pain is getting better.
I had a triple shot of chemo last Friday: Gemzar, Avastin, and the bone hardener, Zometa. I'd also been able to stay on my oral chemo Xeloda pretty consistently while down in Tucson, but since I started back on Gemzar, it seems to intensify the Xeloda's side effects of swollen feet and hands. I started back on the Xeloda today after being off for about three days.
I now have a hernia. Apparently, at a spot along the inner incision from my surgery in late 2005, I've developed an opening or hole. Dr. Bergen says there is a very small chance that my intestines could pop through. Oh joy. I hope this doesn't interfere with my bowling.
Additionally, I'm having pain further down in my right abdomen along the inner incision. Hope there are no more hernias down there. My thighs have been aching as well. I don't know if that's muscle or bone pain. Usually, if the pain is in both limbs or has some "symmetry" to it, then it's from chemo. My left hip continues to hurt, but just slightly. I sure hope the radiation last November took care of all the cancer in my bone. This could really mess up my bowling if I have to have more radiation for cancer in my hip or thigh. I'll know more later this week.
The last few days I've been rather queasy. I need to break out some of the stronger nausea meds. The papaya enzymes aren't cutting it. I had been taking Prilosec daily for nausea which seemed to help. Then I wasn't having any nausea anymore so I quit. Guess I better get back on that again, too.
I told Dr. Bergen about the pain in my shoulder, and he ordered a bone scan which I had Monday in Grand Junction. I haven't heard any results yet from the scan. I see Dr. Bergen again on Friday, plus I see Dr. Oldroyd (radiation oncologist) next Tuesday in Montrose to follow up with the radiation on my hip.
On the positive side, my bloodwork was pretty good last Friday. One liver enzyme was slightly elevated. Albumen a little low. Weight steady - 64.8 kilograms. Hemoglobin at 12.0 which means I'm slightly anemic, but that's to be expected from the chemo. I need to call and get my tumor marker results.
Our "No-Tap" bowling league is supposed to start next week. I hope I'm up to bowling again. Robert and I were going to go bowling on Monday in Grand Junction at this beautiful, new bowling center, but I had fallen into my chemo slump and just didn't have the energy. Maybe we'll try on Friday night.
So anyway, I've been under the weather and dealing with chemo side effects or possibly the cancer spreading to other places. I've been watching TV more than usual and am hooked on House, American Idol, My Name Is Earl, 30 Rock, but the last two nights I watched the Westminster dog show. I would love to have a dog - haven't had one since the 70's - but our cats would go nuts, and we're really not set up for a dog at this point. Biscuit gained some weight while we were out of town. I may have gotten the hernia from picking her up! When we got home that Tuesday night from Tucson, she was at the front door wanting to be held and she's barely let me put her down since. I've also become addicted to Kakuro which is a number crossword kind of like Sudoku. When I have energy or am feeling good, I try to get work done. If I'm lying down waiting for a pain or nausea to pass, I will do Sudoku, Kakuro or watch TV.
It's been snowing the last two days, more than what I think they expected.
I may be doing a short documentary with the local school on cholangiocarcinoma or perhaps on having cancer in general. They have a film class at Ouray School which I think is fantastic, and I'd love to work with them.
I hope this finds everyone well, having a good Valentine's Day. I need to send some special love to my cousins in Florida (Nancy, Nita, Donald, and Pam). Their mother, my lovely Aunt Jean, passed away this morning after battling several illnesses for some time.
Just up here in Colorado feeling like I'm literally coming apart at the seams, taking a million different pills, and telling myself, "Ride it out, Caroline! Embrace those meds!"
Sincerely, Caroline
I did my radio show on Sunday and have info on how to "stream" it on your computer. I hope to put that in the "dashboard" of this blog, but I want to test it out first.
Okay, so let me catch things up. We got home from Tucson a week ago yesterday on Feb. 6th. I've still been fighting a cold or sinus infection, plus I have been really tired. A pain started in my left shoulder a week ago today. I would take one dose of Ibuprofen during the day, but my oncologist has warned me not to take too much Ibuprofen. So if I just lay still in bed after the Ibuprofen wore off, I wouldn't feel any pain. I've been taking Oxycodone at bedtime. The pain is getting better.
I had a triple shot of chemo last Friday: Gemzar, Avastin, and the bone hardener, Zometa. I'd also been able to stay on my oral chemo Xeloda pretty consistently while down in Tucson, but since I started back on Gemzar, it seems to intensify the Xeloda's side effects of swollen feet and hands. I started back on the Xeloda today after being off for about three days.
I now have a hernia. Apparently, at a spot along the inner incision from my surgery in late 2005, I've developed an opening or hole. Dr. Bergen says there is a very small chance that my intestines could pop through. Oh joy. I hope this doesn't interfere with my bowling.
Additionally, I'm having pain further down in my right abdomen along the inner incision. Hope there are no more hernias down there. My thighs have been aching as well. I don't know if that's muscle or bone pain. Usually, if the pain is in both limbs or has some "symmetry" to it, then it's from chemo. My left hip continues to hurt, but just slightly. I sure hope the radiation last November took care of all the cancer in my bone. This could really mess up my bowling if I have to have more radiation for cancer in my hip or thigh. I'll know more later this week.
The last few days I've been rather queasy. I need to break out some of the stronger nausea meds. The papaya enzymes aren't cutting it. I had been taking Prilosec daily for nausea which seemed to help. Then I wasn't having any nausea anymore so I quit. Guess I better get back on that again, too.
I told Dr. Bergen about the pain in my shoulder, and he ordered a bone scan which I had Monday in Grand Junction. I haven't heard any results yet from the scan. I see Dr. Bergen again on Friday, plus I see Dr. Oldroyd (radiation oncologist) next Tuesday in Montrose to follow up with the radiation on my hip.
On the positive side, my bloodwork was pretty good last Friday. One liver enzyme was slightly elevated. Albumen a little low. Weight steady - 64.8 kilograms. Hemoglobin at 12.0 which means I'm slightly anemic, but that's to be expected from the chemo. I need to call and get my tumor marker results.
Our "No-Tap" bowling league is supposed to start next week. I hope I'm up to bowling again. Robert and I were going to go bowling on Monday in Grand Junction at this beautiful, new bowling center, but I had fallen into my chemo slump and just didn't have the energy. Maybe we'll try on Friday night.
So anyway, I've been under the weather and dealing with chemo side effects or possibly the cancer spreading to other places. I've been watching TV more than usual and am hooked on House, American Idol, My Name Is Earl, 30 Rock, but the last two nights I watched the Westminster dog show. I would love to have a dog - haven't had one since the 70's - but our cats would go nuts, and we're really not set up for a dog at this point. Biscuit gained some weight while we were out of town. I may have gotten the hernia from picking her up! When we got home that Tuesday night from Tucson, she was at the front door wanting to be held and she's barely let me put her down since. I've also become addicted to Kakuro which is a number crossword kind of like Sudoku. When I have energy or am feeling good, I try to get work done. If I'm lying down waiting for a pain or nausea to pass, I will do Sudoku, Kakuro or watch TV.
It's been snowing the last two days, more than what I think they expected.
I may be doing a short documentary with the local school on cholangiocarcinoma or perhaps on having cancer in general. They have a film class at Ouray School which I think is fantastic, and I'd love to work with them.
I hope this finds everyone well, having a good Valentine's Day. I need to send some special love to my cousins in Florida (Nancy, Nita, Donald, and Pam). Their mother, my lovely Aunt Jean, passed away this morning after battling several illnesses for some time.
Just up here in Colorado feeling like I'm literally coming apart at the seams, taking a million different pills, and telling myself, "Ride it out, Caroline! Embrace those meds!"
Sincerely, Caroline
Thursday, February 01, 2007
Greetings from Arizona
I had chemo early on January 24th, and we left Grand Junction about noon for Arizona. We drove through Utah - Moab, Monticello, Blanding, Bluff, Monument Valley. We got to my sister's house in Prescott at 9:00 p.m. It was nice to drive through the canyon country.
My bloodwork was about the same as at the previous chemo - slightly anemic and platelets a little low. I had been battling a cold which I seem to have given to several other people. It got much worse once we got to Tucson which is probably from the chemo knocking my resistance down. I felt pretty good on Thursday, probably from the steroids I got at chemo the day before. But Friday, I had the full blown side effects - I was freezing cold and could not get warm. My doctor called in a prescription of antibiotics for me, and I have gradually been getting better. I'm still blowing my nose a lot and going through Kleenex like crazy.
Robert & I were open for business starting last Friday at the Inn Suites in Tucson (room 160) with our new business, ColoradoMinerals.com. The show has been going fairly well for us. My sisters came down from Prescott on Tuesday and brought me back home with them. We were going to drive to the south rim of the Grand Canyon yesterday, but it was snowing, and with me still fighting the cold, we thought it would be better to stay home. Today, they made me stay in bed all day, as I am going back to Tucson tomorrow. I finished an autobiography by Donovan, the singer from the 1960's, which was quite interesting. We plan to stop in Phoenix tomorrow and see the Bodyworks-3 exhibit. I want to see what the liver looks like. I hope I can see the bile ducts as well.
We have closed Robert's shop the Sandman in Ouray. We both had raging colds the week before we left, and we couldn't get everything out of the shop before we left town. So we are indebted to our employees Elwood and Rick for moving the last things out of the space for us.
Our space is being taken over by an artist in Ouray named Susan Snodgrass. We love her work and wish her well with her new studio and gallery.
Just down in Arizona, blowing the old honker and enjoying the company of my sisters, my brother-in-law Al, their dog Mac and their two cats.
Sincerely,
Caroline
My bloodwork was about the same as at the previous chemo - slightly anemic and platelets a little low. I had been battling a cold which I seem to have given to several other people. It got much worse once we got to Tucson which is probably from the chemo knocking my resistance down. I felt pretty good on Thursday, probably from the steroids I got at chemo the day before. But Friday, I had the full blown side effects - I was freezing cold and could not get warm. My doctor called in a prescription of antibiotics for me, and I have gradually been getting better. I'm still blowing my nose a lot and going through Kleenex like crazy.
Robert & I were open for business starting last Friday at the Inn Suites in Tucson (room 160) with our new business, ColoradoMinerals.com. The show has been going fairly well for us. My sisters came down from Prescott on Tuesday and brought me back home with them. We were going to drive to the south rim of the Grand Canyon yesterday, but it was snowing, and with me still fighting the cold, we thought it would be better to stay home. Today, they made me stay in bed all day, as I am going back to Tucson tomorrow. I finished an autobiography by Donovan, the singer from the 1960's, which was quite interesting. We plan to stop in Phoenix tomorrow and see the Bodyworks-3 exhibit. I want to see what the liver looks like. I hope I can see the bile ducts as well.
We have closed Robert's shop the Sandman in Ouray. We both had raging colds the week before we left, and we couldn't get everything out of the shop before we left town. So we are indebted to our employees Elwood and Rick for moving the last things out of the space for us.
Our space is being taken over by an artist in Ouray named Susan Snodgrass. We love her work and wish her well with her new studio and gallery.
Just down in Arizona, blowing the old honker and enjoying the company of my sisters, my brother-in-law Al, their dog Mac and their two cats.
Sincerely,
Caroline
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