In case you don't recognize me in the next few weeks, I'll be the chick that looks like Penelope Cruz walking her dog through the streets of Leland. Yeah, "that me." I had my first chemo session with Taxol/Avastin last week and it was no picnic. Nausea (that apparently I was not supposed to get), fatigue, and oh yeah, pain because I can never get my pain prescriptions filled properly due to problems with the pharmacy stocking the meds and the insurance company agreeing to pay for them. AGGH@##@%%%%!!!! So, I decided to get a new wig for the hair loss this time around to cheer myself up. I got the "Lola" wig (that's a scary name, I know) that looks to me a lot like Penelope Cruz's hair from the late 90's. So, we'll see! I bought it online so there is no telling what I'll look like!
Our holidays were good. Just now putting the decorations away, which I love because it means the craziness of the holidays is done! I've been blessed with such wonderful trips to Napa, Florida, and Asheville that I'm ready to hunker down and watch the days pass from the comfort of my life raft (bed) while watching my favorite tv. I don't expect to be up to too much activity because the treatments are weekly (every Wednesday) in Chapel Hill. I have about 3 days of recovery, a couple of days of feeling ok, and then another treatment. I will have every 4th Wednesday off. Woo hoo! So, lots of driving, lots of nausea, lots of fatigue. I'll survive. Hopefully, I'll notice an improvement in a few weeks. I'm willing to give it up to 6 months. If I don't see an improvement in my pain by then, I'm stopping.
Our office manager Gladys is coordinating help for us. We're asking for drivers to take me to Chapel Hill and back on treatment days, meals, and help getting the girls to gymnastics. Fortunately, our church has been helpful as have many of our friends who continue to amaze me with the help they are willing to provide. Our youngest daughter started competitive team gymnastics recently so her schedule is even busier. But, with God's help and that of many other people too, we'll get through this tough time.
Happy New Year to all and God bless!
Sofie
Sunday, January 2, 2011
Friday, December 3, 2010
Progression of mets
Our [Geoff and my] visit to my oncologist in Chapel Hill did not go so well. We did not do any scans but sat with Dr. Muss and explained that my quality of life has disappeared and I want it fixed. Dr. Muss has always said that, with bone metastases, the only way to gauge progression is to see how I feel. There are no tumors that can be measured when the cancer is in the bone. And I feel lousy. Every day. I'm taking a lot of pain medicine that helps but does not help enough. And there's no explanation for that. So, after 2 short months on Faslodex, we're moving on.
Last night, I had to dig out my new old friend "the wig." I don't know where all my sleep caps ended up so I had to order new ones. Yes, folks, I'm going back on the fun, hard core, lose your hair chemo. Starting December 29. It's not like I was planning a big New Years party anyway.
The plan is to start weekly Taxol and Avastin treatments on 12/29. I assume I'll receive about 12 treatments, if I can tolerate it. Taxol is notorious for causing bad peripheral neuropathy [numbness in the fingers]. Since I already have that, I may be retiring my typing job of writing appellate briefs for good. [I'm already on disability but working a little bit still]. You may have heard about Avastin recently because the FDA tried to ban its use in metastatic breast cancer patients. That's because although it helped slow progress of the disease, it did not extend their life. So, who cares that it helped people double their "progression free survival." It's all about survival in this game. To hell with how we feel during that survival period.
I'm thrilled to be bringing out the big guns, and ok with the hair loss too. See, I have very little quality of life. We went to Amelia Island, Florida for Thanksgiving. We ate very nice meals. Tried to drink a little wine here and there. On the 2 occasions I tried to overeat and have more than 2 glasses of wine, I had to retreat to our hotel room, lie face down on the bed, and try and keep the vomit down. So, two of my favorite activities, eating and drinking, are seriously limited right now. I have a great appetite, mind you, and have still managed to gain a few pounds. But if I overeat at all I get sick. So, not too fun.
If you live near us, and are able to help, please do so. Our office manager, Gladys, will be taking names and phone numbers again at 251-8333. In January, we'll need help with meals and with driving the girls to and from gymnastics. I'm going to plan on being in bed for 3 months. Hopefully I'll be more functional than that but considering how little I do now before chemo, it's not looking too good.
Happy holidays everyone! I hope you enjoy this time of year and all of its blessings.
Love,
Sofie
Last night, I had to dig out my new old friend "the wig." I don't know where all my sleep caps ended up so I had to order new ones. Yes, folks, I'm going back on the fun, hard core, lose your hair chemo. Starting December 29. It's not like I was planning a big New Years party anyway.
The plan is to start weekly Taxol and Avastin treatments on 12/29. I assume I'll receive about 12 treatments, if I can tolerate it. Taxol is notorious for causing bad peripheral neuropathy [numbness in the fingers]. Since I already have that, I may be retiring my typing job of writing appellate briefs for good. [I'm already on disability but working a little bit still]. You may have heard about Avastin recently because the FDA tried to ban its use in metastatic breast cancer patients. That's because although it helped slow progress of the disease, it did not extend their life. So, who cares that it helped people double their "progression free survival." It's all about survival in this game. To hell with how we feel during that survival period.
I'm thrilled to be bringing out the big guns, and ok with the hair loss too. See, I have very little quality of life. We went to Amelia Island, Florida for Thanksgiving. We ate very nice meals. Tried to drink a little wine here and there. On the 2 occasions I tried to overeat and have more than 2 glasses of wine, I had to retreat to our hotel room, lie face down on the bed, and try and keep the vomit down. So, two of my favorite activities, eating and drinking, are seriously limited right now. I have a great appetite, mind you, and have still managed to gain a few pounds. But if I overeat at all I get sick. So, not too fun.
If you live near us, and are able to help, please do so. Our office manager, Gladys, will be taking names and phone numbers again at 251-8333. In January, we'll need help with meals and with driving the girls to and from gymnastics. I'm going to plan on being in bed for 3 months. Hopefully I'll be more functional than that but considering how little I do now before chemo, it's not looking too good.
Happy holidays everyone! I hope you enjoy this time of year and all of its blessings.
Love,
Sofie
Monday, November 8, 2010
Dad's memorial
Well, some daughter I am. I forgot to mention that dad's memorial went very well! I had no idea how to have a memorial service and really didn't plan too much. So I just stood up and told his life story. It felt good to share his interesting life with everyone -- most folks there did not know him all that well or had not known him all of his life. So, even though I wasn't really excited about having the memorial in the beginning, it was nice to provide some punctuation at the end of his life. It was a warm and fuzzy Kodak kind of day.
For those of you that came, thank you so much! It meant a lot to have you there. I understand that due to travel constraints most relatives and family could not come. Knowing my father, he would have been just fine with that too!
I've got his ashes in the house now. We were going to sprinkle him in the ocean out here but I'm a bit undecided about that now. He was not a big beach guy here in North Carolina. I've got to think about where he'd like to rest for eternity. In the meantime, he's a great houseguest. Having him in the living room is kind of nice! I can talk to him and he has to listen! No matter what football game is on t.v., etc. :)
Hugs and kisses...
For those of you that came, thank you so much! It meant a lot to have you there. I understand that due to travel constraints most relatives and family could not come. Knowing my father, he would have been just fine with that too!
I've got his ashes in the house now. We were going to sprinkle him in the ocean out here but I'm a bit undecided about that now. He was not a big beach guy here in North Carolina. I've got to think about where he'd like to rest for eternity. In the meantime, he's a great houseguest. Having him in the living room is kind of nice! I can talk to him and he has to listen! No matter what football game is on t.v., etc. :)
Hugs and kisses...
Sorry no write...
I hope everyone had a great Halloween. I know we did! I even managed to cook a few things which my family will tell you is very rare these days.
I've been bad about updating on here. I had about a week of feeling pretty darn good -- I saw the oncologist in Chapel Hill and he put me on Faslodex (2 shots in the rear end, not so good) and back on the Zometa bone strengthening regimen. So, cocky me, I decided I no longer needed pain meds and contacted my pain management PA about curtailing all the meds. All he## broke loose even though I did so gradually. Now, even though I'm basically back on the meds I was on before, I still feel like I'm trying to catch up with the pain. Anyone who has had chronic pain can understand the worst part is trying to catch up when the pain gets ahead of you. It just doesn't work. Anyhoo, that's why I've been AWOL. When the pain saturates your life it just stinks because NOTHING goes well. I'm going to work on getting it straightened out and then leave it alone for goodness sake!
The family is doing well and gearing up for our trip to Florida for Thanksgiving. I've never been to Amelia Island so I'm excited.... probably more excited than the kids are to see Santa too!
I promise to write more soon when I've got a fresher mind. Right now, it's dinnertime and I'm hungry and ready for bed.
Nighty night everyone!
I've been bad about updating on here. I had about a week of feeling pretty darn good -- I saw the oncologist in Chapel Hill and he put me on Faslodex (2 shots in the rear end, not so good) and back on the Zometa bone strengthening regimen. So, cocky me, I decided I no longer needed pain meds and contacted my pain management PA about curtailing all the meds. All he## broke loose even though I did so gradually. Now, even though I'm basically back on the meds I was on before, I still feel like I'm trying to catch up with the pain. Anyone who has had chronic pain can understand the worst part is trying to catch up when the pain gets ahead of you. It just doesn't work. Anyhoo, that's why I've been AWOL. When the pain saturates your life it just stinks because NOTHING goes well. I'm going to work on getting it straightened out and then leave it alone for goodness sake!
The family is doing well and gearing up for our trip to Florida for Thanksgiving. I've never been to Amelia Island so I'm excited.... probably more excited than the kids are to see Santa too!
I promise to write more soon when I've got a fresher mind. Right now, it's dinnertime and I'm hungry and ready for bed.
Nighty night everyone!
Tuesday, October 12, 2010
Moving on....
I've not posted lately, I know. I can't say I've been in the total doldrums because of the loss of my dad, although it obviously saddens me. I think I'm just trying to get on with my life but still trying to bury my head in the sand about the big "C" which is trying to rear its ugly head again. If I don't blog, I can sometimes forget, at least for a while.
Yes, the back pain has been ratcheting up again, despite loads of pain meds. Off for another MRI in Chapel Hill next week which will probably not show anything new to explain the pain increase because it usually doesn't (do I sound cynical or what?). I'm just anxious to find something new to help decrease the pain, something other than an opiate or traditional radiation (been there, done that).
Halloween is big in our house, so we're getting the house all decorated and ready. Our annual trick or treat event is on, so if you want to trick or treat with the kids, come on over! The only condition is that the adults also have to dress up :) It only comes once a year after all!
I hope that everyone is doing well and getting ready for the holiday season, which is just around the corner. (eeeekkkk) As for me, I'm just going to try and get some early shopping done and wait for our holiday travels to Amelia Island, Florida for Thanksgiving (lots of Santa events!) and to the Grove Park Inn in Asheville for Christmas. I could travel year round....
Lots of love to everyone,
Sofie
Yes, the back pain has been ratcheting up again, despite loads of pain meds. Off for another MRI in Chapel Hill next week which will probably not show anything new to explain the pain increase because it usually doesn't (do I sound cynical or what?). I'm just anxious to find something new to help decrease the pain, something other than an opiate or traditional radiation (been there, done that).
Halloween is big in our house, so we're getting the house all decorated and ready. Our annual trick or treat event is on, so if you want to trick or treat with the kids, come on over! The only condition is that the adults also have to dress up :) It only comes once a year after all!
I hope that everyone is doing well and getting ready for the holiday season, which is just around the corner. (eeeekkkk) As for me, I'm just going to try and get some early shopping done and wait for our holiday travels to Amelia Island, Florida for Thanksgiving (lots of Santa events!) and to the Grove Park Inn in Asheville for Christmas. I could travel year round....
Lots of love to everyone,
Sofie
Friday, September 10, 2010
Dad's obituary & memorial
Dad's obituary was in the paper today. I'm including a link to the obit in this blog for anyone interested. We did not include a picture but it's a nice write-up.
Also, for anyone interested, we'll be having dad's memorial service at Wilmington Cremation and Burial on 41st Street in Wilmington, on Sunday October 17 at 1 pm. We wanted to give friends and family from out of town a chance to come if they can. It will be very small and intimate per dad's wishes. He always said he wanted to be cremated and so that's what we've done.
For my local buddies, I'll be calling up willing troops soon to help me clean out my parents' house. Hopefully we'll have mom placed in a home soon and we can put the house on the market. For now, Bonnie continues to take good care of mom, but Geoff and I cannot afford round the clock care for too much longer. She should qualify for medicaid and that will hopefully pay fully for her care. Ugghhh. I never knew how hard it is to get financial help for elderly folks with alzheimers until this started -- someone needs to get medicare on board to start taking care of all these people. It's not fair that, if she had cancer or something, medicare would cover a nursing home stay for her. With alzheimers, however, there is no coverage unless you are dirt poor and qualify for medicaid. The income limit for medicaid is about $1100 a month. Seriously?????
The plan is to get her placed, pay for it for a few weeks, and have medicaid come in and pick up the tab. They'll probably take her meager social security and my dad's pension, but that beats trying to come up with about $5300 a month to pay for her care. What a racket!
Anyone, things should start to normalize again soon. Geoff and I are planning a much needed grown-up weekend away in a couple of weeks. Ahhhh. And Wendy and I are headed back to California in early December to either Napa or Mendocino. AHHHHH! Sure, I should be saving that money. But sometimes, you've got to pamper yourself, right? :)
Love,
Sofie
P.S. TGIF!
Also, for anyone interested, we'll be having dad's memorial service at Wilmington Cremation and Burial on 41st Street in Wilmington, on Sunday October 17 at 1 pm. We wanted to give friends and family from out of town a chance to come if they can. It will be very small and intimate per dad's wishes. He always said he wanted to be cremated and so that's what we've done.
For my local buddies, I'll be calling up willing troops soon to help me clean out my parents' house. Hopefully we'll have mom placed in a home soon and we can put the house on the market. For now, Bonnie continues to take good care of mom, but Geoff and I cannot afford round the clock care for too much longer. She should qualify for medicaid and that will hopefully pay fully for her care. Ugghhh. I never knew how hard it is to get financial help for elderly folks with alzheimers until this started -- someone needs to get medicare on board to start taking care of all these people. It's not fair that, if she had cancer or something, medicare would cover a nursing home stay for her. With alzheimers, however, there is no coverage unless you are dirt poor and qualify for medicaid. The income limit for medicaid is about $1100 a month. Seriously?????
The plan is to get her placed, pay for it for a few weeks, and have medicaid come in and pick up the tab. They'll probably take her meager social security and my dad's pension, but that beats trying to come up with about $5300 a month to pay for her care. What a racket!
Anyone, things should start to normalize again soon. Geoff and I are planning a much needed grown-up weekend away in a couple of weeks. Ahhhh. And Wendy and I are headed back to California in early December to either Napa or Mendocino. AHHHHH! Sure, I should be saving that money. But sometimes, you've got to pamper yourself, right? :)
Love,
Sofie
P.S. TGIF!
Wednesday, September 8, 2010
More on my dad
Hi everyone,
I'll make this short. We took dad off of life support yesterday after docs announced that there was nothing else they could do to help him. His fever was still 104, and he required more and more support to keep his heart and lungs working. I wanted to be there when he passed on and considered staying all night but headed home to get caught up on work and everything else that I have to do. At 1 am I got "the call" and hurried to the hospital, but he'd already passed away at about 1:30 am. Just looking at him I knew his soul was gone and that he'd headed to a better place. At least we know that :)
Now to getting mom in a nursing home. At least she has Bonnie to care for her until then... Lord knows I could not do that. Thank you for all your prayers. We'll probably have a memorial service for dad in mid October so out of towners can come - he wants to be cremated.
Thanks for your thoughts and well wishes,
Sofie
I'll make this short. We took dad off of life support yesterday after docs announced that there was nothing else they could do to help him. His fever was still 104, and he required more and more support to keep his heart and lungs working. I wanted to be there when he passed on and considered staying all night but headed home to get caught up on work and everything else that I have to do. At 1 am I got "the call" and hurried to the hospital, but he'd already passed away at about 1:30 am. Just looking at him I knew his soul was gone and that he'd headed to a better place. At least we know that :)
Now to getting mom in a nursing home. At least she has Bonnie to care for her until then... Lord knows I could not do that. Thank you for all your prayers. We'll probably have a memorial service for dad in mid October so out of towners can come - he wants to be cremated.
Thanks for your thoughts and well wishes,
Sofie
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