Sorry so long, no post. It's been a rough road back from chemo and, unlike my chemo experience in 2007, I won't bounce back to an energetic, pain-free Sofie. But at least I am feeling somewhat more awake at 8 pm than I was during chemo. So that's an improvement. My pain issues continue to plague me and are not well-managed with all the pain meds I am taking so that is my biggest problem right now. My oncologist and I have decided to try Quadramet, which is a radioactive infusion given that sends radiation-type treatment through your bloodstream to your bones. It is supposed to help relieve bone pain caused by the metastases and is kind of like a whole body radiation without going under the radiation machine. We'll see if it helps, hopefully! If it does not provide relief, then we know that most of my pain is tissue or nerve related and we'll have to figure something else out.
In the meantime, life goes on, right? Spring is here :), the kids are busy (as usual), and it's about beach time which is so exciting! Geoff and I are going to have an overnight in downtown Wilmington in a couple of weeks (to try and make up for our brief stay at the Graystone Inn last year that ended up with me in the hospital!) Between that and our trips to Oak Island to get the condo ready for the summer we have many blessings to focus on.... and distract us from the beast that is my cancer.
Speaking of, our pastor Mike and Hugo from PC3 came to pray with Geoff and I last week. That was very nice... I appreciate any and all prayers and continue to believe that a miracle can happen! If it does not, I am sure that I am part of some plan of God's that I just do not know about yet. Either way, all I can do is make the best of it and move on.
Happy Spring to all!
Sofie
Monday, April 4, 2011
Tuesday, March 1, 2011
Pain
Sorry for not posting for so long. Suffice it to say, I've been in a LOT of pain lately. Fortunately, I got the whole nausea/chemo thing under control by begging for Emend which is a fantastic, but expensive, anti-nausea drug. I also finally got Blue Cross to approve one of my pain meds, Fentora, which is about $6000 per month at my dose (for insurance to pay, not me!).
I don't know what happened to increase the pain. I went to some legal CLEs in a couple of weeks, sitting in chairs. Then we drove to Simpsonville, SC for our oldest daughter's gymnastics meet. Lots of time in the car.
I am to the point now where it's absolutely excruciating to sit in any chair for any length of time. Even to just drive across town. So I cancelled my trip to Orlando for the Young Survivors' breast cancer conference because I figured I'd just be in the hotel room anyway. It sucks.
On a high note, I joined a new ladies small group from my church that is awesome! It's during the daytime so I am able to handle the time and I have energy. Unfortunately, anything after 6 pm now for me is just not doable.
I also got to kick Avastin to the curb. Clearly, all these drugs are not working and the nosebleeds and wounds not healing (all known side effects of Avastin) really got old. Won't go into all the details of what wounds did not heal.... So it's just Taxol now for 3 more weeks. Then I am done. I want my hair back. I want some energy back. I want to try and find a treatment that will HELP me with my back/pelvis pain.
Don't get me wrong, I fight and struggle through the pain. Hot yoga is a new obsession. The only problem is that I am so tired after the class that I am asleep by 8 pm. I need to find a night class because then I could just fall asleep afterward! But it is awesome! Reminds me of the olden days and the runners' high. Aggghhhh... And I still love my pilates and walking the dog. I just have to lie down a lot when I'm not being active. Which is good.
Thank you all SO MUCH for the food and the prayers!!! We have been inundated with food. I think we can safely stop by the end of this month and by April I should be back to having SOME energy. I hope. Prayers for my next treatment would be appreciated, and wisdom to my oncologist to find something that might work. God is the only one who can fix this mess.
Love you all!
I don't know what happened to increase the pain. I went to some legal CLEs in a couple of weeks, sitting in chairs. Then we drove to Simpsonville, SC for our oldest daughter's gymnastics meet. Lots of time in the car.
I am to the point now where it's absolutely excruciating to sit in any chair for any length of time. Even to just drive across town. So I cancelled my trip to Orlando for the Young Survivors' breast cancer conference because I figured I'd just be in the hotel room anyway. It sucks.
On a high note, I joined a new ladies small group from my church that is awesome! It's during the daytime so I am able to handle the time and I have energy. Unfortunately, anything after 6 pm now for me is just not doable.
I also got to kick Avastin to the curb. Clearly, all these drugs are not working and the nosebleeds and wounds not healing (all known side effects of Avastin) really got old. Won't go into all the details of what wounds did not heal.... So it's just Taxol now for 3 more weeks. Then I am done. I want my hair back. I want some energy back. I want to try and find a treatment that will HELP me with my back/pelvis pain.
Don't get me wrong, I fight and struggle through the pain. Hot yoga is a new obsession. The only problem is that I am so tired after the class that I am asleep by 8 pm. I need to find a night class because then I could just fall asleep afterward! But it is awesome! Reminds me of the olden days and the runners' high. Aggghhhh... And I still love my pilates and walking the dog. I just have to lie down a lot when I'm not being active. Which is good.
Thank you all SO MUCH for the food and the prayers!!! We have been inundated with food. I think we can safely stop by the end of this month and by April I should be back to having SOME energy. I hope. Prayers for my next treatment would be appreciated, and wisdom to my oncologist to find something that might work. God is the only one who can fix this mess.
Love you all!
Monday, January 17, 2011
Chemo Hell...
Well, it finally happened. I scooted through my first round of chemo (TAC) in 2007 pretty well. Had some nausea and fatigue. Nothing like what happened last Thursday night.
I was literally up all night vomiting. (sorry folks, this is graphic). Probably threw up 10 times. My throat got so swollen from the vomiting that only today, four days later, can I swallow without extreme pain. I have never been that sick in my life and I hope I never get that way again. What happened? I don't know.
See, when I started the Taxol/Avastin treatment, my oncologist told me that there was only a small chance of getting any nausea. I did not receive any anti nausea meds that I got in 2007, the really good expensive ones like Aloxi or Emend. I have some Zofran left over from other treatments but that could not face the big bad heaves I had Thursday night. I literally slept all night with my head in the toilet because I could not move. The next few days (until today) my head was banging all day long. Really, this is the chemo we've all heard about from the old days that makes everyone so scared to get chemo. I honestly can't believe that this low-dose Taxol/Avastin (and the Avastin is not supposed to cause ANY nausea or vomiting) would make me sicker than the high-dose Adriamycin I got a few years ago. They call that stuff the red devil because it's so bad. ANYWAY, enough talk about puke.
So, I got my head shaved last week. My lovely, dear husband got his shaved at the same time for camaraderie. He's so awesome. I've not sported my Penelope Cruz wig left. It's here and it's lovely but it needs some time with a pair of scissors and an expert at cutting wig hair. Then, I'll break it out with some cool outfit. It makes me feel like I'm 25 because the hair literally goes past the middle of my back. I've never had my hair that long! It's fun and a nice diversion from being ill.
Well folks, off to rest. Please keep those meals coming. We appreciate and love them! Just so you know, we all eat red meat! I gave up being a vegetarian in college. One week, we had about 8 chicken meals and I do NOT want to sound ungrateful, I TRULY appreciate the effort of cooking a meal because I am not cooking now. When I try to cook, I exhaust myself. I know how hard it is to shop for the food, find the recipe, blah, blah. But we can eat red meat and soups too. I know Hadley's allergies make things confusing but it's easiest to start from the ground up. Pick a main ingredient (ie meat) and add to it. Ok, I'll shut up now because I don't want to sound ungrateful. Sometimes I am too blunt.
As a last note, should be the first note, I've chosen my "one word" and it is surrender. I am going to try and surrender my life, my health, my $ issues, all of it, to God. I know that's what we're meant to do but it is easier said than done.
Love to all,
Sofie
I was literally up all night vomiting. (sorry folks, this is graphic). Probably threw up 10 times. My throat got so swollen from the vomiting that only today, four days later, can I swallow without extreme pain. I have never been that sick in my life and I hope I never get that way again. What happened? I don't know.
See, when I started the Taxol/Avastin treatment, my oncologist told me that there was only a small chance of getting any nausea. I did not receive any anti nausea meds that I got in 2007, the really good expensive ones like Aloxi or Emend. I have some Zofran left over from other treatments but that could not face the big bad heaves I had Thursday night. I literally slept all night with my head in the toilet because I could not move. The next few days (until today) my head was banging all day long. Really, this is the chemo we've all heard about from the old days that makes everyone so scared to get chemo. I honestly can't believe that this low-dose Taxol/Avastin (and the Avastin is not supposed to cause ANY nausea or vomiting) would make me sicker than the high-dose Adriamycin I got a few years ago. They call that stuff the red devil because it's so bad. ANYWAY, enough talk about puke.
So, I got my head shaved last week. My lovely, dear husband got his shaved at the same time for camaraderie. He's so awesome. I've not sported my Penelope Cruz wig left. It's here and it's lovely but it needs some time with a pair of scissors and an expert at cutting wig hair. Then, I'll break it out with some cool outfit. It makes me feel like I'm 25 because the hair literally goes past the middle of my back. I've never had my hair that long! It's fun and a nice diversion from being ill.
Well folks, off to rest. Please keep those meals coming. We appreciate and love them! Just so you know, we all eat red meat! I gave up being a vegetarian in college. One week, we had about 8 chicken meals and I do NOT want to sound ungrateful, I TRULY appreciate the effort of cooking a meal because I am not cooking now. When I try to cook, I exhaust myself. I know how hard it is to shop for the food, find the recipe, blah, blah. But we can eat red meat and soups too. I know Hadley's allergies make things confusing but it's easiest to start from the ground up. Pick a main ingredient (ie meat) and add to it. Ok, I'll shut up now because I don't want to sound ungrateful. Sometimes I am too blunt.
As a last note, should be the first note, I've chosen my "one word" and it is surrender. I am going to try and surrender my life, my health, my $ issues, all of it, to God. I know that's what we're meant to do but it is easier said than done.
Love to all,
Sofie
Sunday, January 2, 2011
Penelope Cruz moves to Magnolia Greens
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
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
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!
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