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
Friday, December 3, 2010
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
Wednesday, September 1, 2010
My Dad
Hi everyone,
As many of you have no doubt heard, my dad is in the hospital again. His PICC (sp?)(what oncologist uses to administer chemo) line got infected and he caught an e-coli infection. Then, he went into septic shock and had at least one heart attack. On Sunday morning, it looked like he would not make it. When his heart was trying to stop, docs shocked him. I went in early Sunday morning to be with him while he passed on (or so we thought). To make a long story short, he's still in the ICU, still on a ventilator with blood pressure meds and antibiotics and not doing so great. They tried to let him breathe on his own and his body reacted badly so they put him back on the ventilator. I don't know if he'll make it or not. Obviously, he has to be able to breathe on his own at some point. At the moment, we're just waiting to see if he can get rid of the infection. If he does, that may help his body strengthen enough to start breathing on its own. His heart is not happy at the moment so it's very iffy.
He is sedated and asleep at the ICU so he cannot talk on the phone. The ICU does not allow flowers or anything like that. Basically, we're just waiting and praying. I hope he can breathe on his own soon or we'll have to make some big decisions that I don't want to make.
Nevertheless, the family is set to go to Bald Head Island for Labor Day weekend. Geoff and my 12th wedding anniversary is the 5th so we absolutely have to celebrate. It's close enough that I can get back the hospital if I have to but the house is reserved and it's supposed to be amazing. Geoff got the rental as a fee in exchange for some work (on a civil case for a change). Otherwise, no family vacations any time soon. We're broke due to paying my mom's caregiver around the clock and me not working. We also have a rental house that we're going to try and sell. Anyone want to buy a 1500 square foot house in Churchill Estates in Wilmington for about $160,000? We need to overhaul that house that has had tenants for 8 + years and put it on the market. Busy busy. No time to get into trouble:)
As for me, I'm hanging on. Lots of pain and fatigue as usual. Taking lots of meds as usual. For the time being, I'm in charge of the Wonderly affairs. Scary! Thank goodness I've surrendered my care and concerns to God. Lord knows I'm not capable of handling this on my own. One blessing with living in crisis mode is that you learn how to deal with crisis!
Many blessings to everyone. Please pray for my dad.... I want to keep his stubborn a** around for a while longer!
Love,
Sofie
As many of you have no doubt heard, my dad is in the hospital again. His PICC (sp?)(what oncologist uses to administer chemo) line got infected and he caught an e-coli infection. Then, he went into septic shock and had at least one heart attack. On Sunday morning, it looked like he would not make it. When his heart was trying to stop, docs shocked him. I went in early Sunday morning to be with him while he passed on (or so we thought). To make a long story short, he's still in the ICU, still on a ventilator with blood pressure meds and antibiotics and not doing so great. They tried to let him breathe on his own and his body reacted badly so they put him back on the ventilator. I don't know if he'll make it or not. Obviously, he has to be able to breathe on his own at some point. At the moment, we're just waiting to see if he can get rid of the infection. If he does, that may help his body strengthen enough to start breathing on its own. His heart is not happy at the moment so it's very iffy.
He is sedated and asleep at the ICU so he cannot talk on the phone. The ICU does not allow flowers or anything like that. Basically, we're just waiting and praying. I hope he can breathe on his own soon or we'll have to make some big decisions that I don't want to make.
Nevertheless, the family is set to go to Bald Head Island for Labor Day weekend. Geoff and my 12th wedding anniversary is the 5th so we absolutely have to celebrate. It's close enough that I can get back the hospital if I have to but the house is reserved and it's supposed to be amazing. Geoff got the rental as a fee in exchange for some work (on a civil case for a change). Otherwise, no family vacations any time soon. We're broke due to paying my mom's caregiver around the clock and me not working. We also have a rental house that we're going to try and sell. Anyone want to buy a 1500 square foot house in Churchill Estates in Wilmington for about $160,000? We need to overhaul that house that has had tenants for 8 + years and put it on the market. Busy busy. No time to get into trouble:)
As for me, I'm hanging on. Lots of pain and fatigue as usual. Taking lots of meds as usual. For the time being, I'm in charge of the Wonderly affairs. Scary! Thank goodness I've surrendered my care and concerns to God. Lord knows I'm not capable of handling this on my own. One blessing with living in crisis mode is that you learn how to deal with crisis!
Many blessings to everyone. Please pray for my dad.... I want to keep his stubborn a** around for a while longer!
Love,
Sofie
Monday, August 2, 2010
Cancer SUCKS!
More fun and games in the cancer department. While at my oncology appointment last Monday in Chapel Hill, Geoff and I got a call that my dad was in the hospital. Apparently, the tumor on his lung has gotten quite large and he had a buildup of fluid around his lung causing shortness of breath. One week later, he's still there. They drained the fluid and he is breathing better, but his white blood cell count got very low because of chemotherapy, as low as .02 (it's supposed to be between 4 and 10) which meant that he had basically no immune system. Several blood transfusions later, his white blood cell count has risen slightly and they were getting ready to discharge him. Now, of course, he's developed a staph infection because of his weak immunity, being in the hospital, and the PICC line they have in his arm to administer chemo. What a mess. My mom (in the late stages of Alzheimers in case anyone didn't know) is staying with her caregiver all day/night to the tune of $120/day funded by Geoff and I. Which is great since I'm no longer working and not yet receiving disability. Did I mention that cancer sucks the big one?!
UGGGHHH! I met with a neurologist at my last appointment. He did find neuropathy in my hands and feet and apparently I was a bit unsteady in my gait when he tested my walking/balance abilities. He recommended another lumbar puncture (yikes) because apparently one test provides very little diagnostic information and you need to have about 3 to really rule out metastases in the spinal fluid. The neurologist also wants me to get another brain MRI to rule out metastases in my brain with all the headaches I'm having and the neurological issues. Again, blissful ignorance sounds more fun. Can't I just bury my head in the sand and pretend none of this is going on? If I did have brain mets, I'm not sure I'd want to know. Sure, they can radiate your head and whatnot but I think at that point I'd prefer to just let the disease run its course. I don't look at that as giving up, either. Sometimes the treatment is worse than the disease itself (look at my dad's situation). I've probably mentioned this before but I put quality of life before quantity of life. I've given up on modern medicine as providing me with satisfying answers to all of my present health problems after being let down so many times.
So that brings me right back to the big man upstairs and trusting in Him to get me through ALL of this. Because to me, right now, this situation seems impossible. What will I do if my dad passes away before my mom? Aside from the emotional sadness of that, practically it is a nightmare. But, one day at a time, right? One minute at a time, in fact. Right now, I have the tools to get through today. Maybe I can stay rested enough today to avoid getting one of my usual head-splitting headaches accompanied by nausea. God has provided me with everything I need to get through this day and this immediate crisis. I need to surrender my worries and cares and let him handle the rest. Easier said than done, isn't it?
At least Opus is back from training camp. It's almost as though he's a new dog! He has good manners, is quieter, and calmer. Camp Hooks "dejerked" our dog! I love it. It's so nice to have my sweet puppy back. He went for his first swim in the ocean last weekend!! It was awesome to see his little webbed feet doing the dog paddle in the ocean waves at Oak Island. Now that brought a smile to my face:)
Love to all,
Sofie
UGGGHHH! I met with a neurologist at my last appointment. He did find neuropathy in my hands and feet and apparently I was a bit unsteady in my gait when he tested my walking/balance abilities. He recommended another lumbar puncture (yikes) because apparently one test provides very little diagnostic information and you need to have about 3 to really rule out metastases in the spinal fluid. The neurologist also wants me to get another brain MRI to rule out metastases in my brain with all the headaches I'm having and the neurological issues. Again, blissful ignorance sounds more fun. Can't I just bury my head in the sand and pretend none of this is going on? If I did have brain mets, I'm not sure I'd want to know. Sure, they can radiate your head and whatnot but I think at that point I'd prefer to just let the disease run its course. I don't look at that as giving up, either. Sometimes the treatment is worse than the disease itself (look at my dad's situation). I've probably mentioned this before but I put quality of life before quantity of life. I've given up on modern medicine as providing me with satisfying answers to all of my present health problems after being let down so many times.
So that brings me right back to the big man upstairs and trusting in Him to get me through ALL of this. Because to me, right now, this situation seems impossible. What will I do if my dad passes away before my mom? Aside from the emotional sadness of that, practically it is a nightmare. But, one day at a time, right? One minute at a time, in fact. Right now, I have the tools to get through today. Maybe I can stay rested enough today to avoid getting one of my usual head-splitting headaches accompanied by nausea. God has provided me with everything I need to get through this day and this immediate crisis. I need to surrender my worries and cares and let him handle the rest. Easier said than done, isn't it?
At least Opus is back from training camp. It's almost as though he's a new dog! He has good manners, is quieter, and calmer. Camp Hooks "dejerked" our dog! I love it. It's so nice to have my sweet puppy back. He went for his first swim in the ocean last weekend!! It was awesome to see his little webbed feet doing the dog paddle in the ocean waves at Oak Island. Now that brought a smile to my face:)
Love to all,
Sofie
Tuesday, July 20, 2010
July
So another month has passed since I've posted. I really am trying to bury my head in the sand....
I ended up having the epidural blood patch done to get ride of the spinal headaches caused by the lumbar puncture from June. That helped get rid of those nasty, debilitating headaches. Unfortunately, over the past few days, I've started getting new headaches of a different variety :( This stinks! Nausea, burping, and the left side of my head pounding in primarily one spot. I think it would feel better if I could put my head inside of a vise! Crazy, I know. Since this past Sunday, I've been largely useless. Again.
On another note, the floors turned out great! Well worth all of the effort. Our house feels so new, it's wonderful! Thank you, Kevin Foley!
We're spending most of our time in Oak Island though, where the girls are attending summer day camps. Going roller skating, bowling, to museums, swimming, playing tennis, and to the aquarium in Myrtle Beach. Busy! Our biggest activity though is driving. That's right. They're doing gymnastics classes 2 days a week, each of them, in Wilmington. On different days. So, 4 days a week, us girls head up the road about 35 miles (each way) for gymnastics classes. Ugghhhh.. I lost my sitters so it's me driving. Scary, I know! But, since I'm not really working, can't really afford to pay the sitter to do the driving anyway. Just a couple more weeks of this.
On Friday, we're heading to Greensboro to the Grandover Resort :) for 2 nights. We plan to go to the zoo in Asheboro on Saturday. Then, we head to Chapel Hill for 2 nights. On Monday, I have a PET scan to try and find out why the he## I feel so crappy, have so much back pain, fatigue etc. I also see my oncologist on Monday and meet a Neurologist. Hopefully, the Neurologist can interpret my spinal fluid results from the lumbar puncture and give me some answers. The worst part is not knowing, honestly. The doctors are satisfied just to find that there's no cancer in my CSF (spinal fluid). I am happy too, but I WANT TO HAVE ANSWERS!!!! Why am I so tired I could sleep for 3 days straight? Why does my lower back feel like it's been run over by an 18 wheeler? Why is my head pounding and I feel like I could throw up all day long? WHY? WHY? WHY? WHY? I really can say that the not knowing has been worse than all of the information I have been provided by all these docs for the past 3 years. Anyway, there, I've vented.
So we have doc visits on Monday the 26th. One more night at the glorious Carolina Inn in Chapel Hill (with the best biscuits and banana bread EVER!) and then back home. We're picking up dear Opus from doggie boot camp where he's been for 3 weeks. I miss him! Hopefully, he's learned a lot and is ready to be the sweet, obedient doggie I know he can be. Then, after that, we hope to have a few days at Oak Island, as a family, for real vacation. No work, no gymnastics, no driving. We can act like all the rest of the tourists hanging out at our condo complex that I'm so jealous of right now. Yippee!
I hope everyone is enjoying summer! I'll post later after I see the doc. Don't expect me to post right away though. No news is good news if you don't hear from me. If something unusual shows up on the PET scan, I'll report it here ASAP.
Much love,
Sofie
I ended up having the epidural blood patch done to get ride of the spinal headaches caused by the lumbar puncture from June. That helped get rid of those nasty, debilitating headaches. Unfortunately, over the past few days, I've started getting new headaches of a different variety :( This stinks! Nausea, burping, and the left side of my head pounding in primarily one spot. I think it would feel better if I could put my head inside of a vise! Crazy, I know. Since this past Sunday, I've been largely useless. Again.
On another note, the floors turned out great! Well worth all of the effort. Our house feels so new, it's wonderful! Thank you, Kevin Foley!
We're spending most of our time in Oak Island though, where the girls are attending summer day camps. Going roller skating, bowling, to museums, swimming, playing tennis, and to the aquarium in Myrtle Beach. Busy! Our biggest activity though is driving. That's right. They're doing gymnastics classes 2 days a week, each of them, in Wilmington. On different days. So, 4 days a week, us girls head up the road about 35 miles (each way) for gymnastics classes. Ugghhhh.. I lost my sitters so it's me driving. Scary, I know! But, since I'm not really working, can't really afford to pay the sitter to do the driving anyway. Just a couple more weeks of this.
On Friday, we're heading to Greensboro to the Grandover Resort :) for 2 nights. We plan to go to the zoo in Asheboro on Saturday. Then, we head to Chapel Hill for 2 nights. On Monday, I have a PET scan to try and find out why the he## I feel so crappy, have so much back pain, fatigue etc. I also see my oncologist on Monday and meet a Neurologist. Hopefully, the Neurologist can interpret my spinal fluid results from the lumbar puncture and give me some answers. The worst part is not knowing, honestly. The doctors are satisfied just to find that there's no cancer in my CSF (spinal fluid). I am happy too, but I WANT TO HAVE ANSWERS!!!! Why am I so tired I could sleep for 3 days straight? Why does my lower back feel like it's been run over by an 18 wheeler? Why is my head pounding and I feel like I could throw up all day long? WHY? WHY? WHY? WHY? I really can say that the not knowing has been worse than all of the information I have been provided by all these docs for the past 3 years. Anyway, there, I've vented.
So we have doc visits on Monday the 26th. One more night at the glorious Carolina Inn in Chapel Hill (with the best biscuits and banana bread EVER!) and then back home. We're picking up dear Opus from doggie boot camp where he's been for 3 weeks. I miss him! Hopefully, he's learned a lot and is ready to be the sweet, obedient doggie I know he can be. Then, after that, we hope to have a few days at Oak Island, as a family, for real vacation. No work, no gymnastics, no driving. We can act like all the rest of the tourists hanging out at our condo complex that I'm so jealous of right now. Yippee!
I hope everyone is enjoying summer! I'll post later after I see the doc. Don't expect me to post right away though. No news is good news if you don't hear from me. If something unusual shows up on the PET scan, I'll report it here ASAP.
Much love,
Sofie
Friday, June 18, 2010
Long time, no write
I did not realize it's been a month since I've posted... sorry. A lot has happened and most of it has not been very positive.
My birthday party was canceled because I felt like crud. I could barely get out of bed that day; I was exhausted and had lots of back pain. I realized that the party would not be fun for me in that condition. So we canceled.
A couple of weeks later, I ended up in the hospital. Geoff and I, with the generosity of our church small group, had planned a "grown up weekend" away in downtown Wilmington. Again, I felt so lousy that we checked out of the Inn and I went to the hospital. Instead of a nice dinner and a bottle of wine, I enjoyed Dilaudid (sp?) and an IV. But, I got a lot of sleep and, with the exception of the 2 hour spinal MRI that was about as comfortable as lying on a sidewalk, without moving, next to a jackhammer, the hospital admission was not too bad of an experience.
Then, last week, I was subjected to a Lumbar Puncture or spinal tap where a radiologist removed spinal fluid from my back. Fun. They neglected to mention that I would then have the worst headache known to man for almost 2 weeks. Just getting out of bed left me nearly vomiting. My head and neck were pounding and pulsating with pain, my ears were ringing and I could not hear, and I felt nauseous anytime I was not flat on my back. So I missed our family's trip to Massachusetts and stayed in bed for a week. 10 days later, I'm a lot better but still break into a sweat when I am sitting upright for too long. Like right now. I tried to drive yesterday and, well, that was interesting. Anyhoo, I suppose I'm on the mend and am grateful for that.
The LP test was done to rule out metastases in the spinal fluid. I believe that they have done that, although my oncologist does not know why my white blood cell count was high. I need to see a neurologist to try and figure out why I still feel so lousy, have so much back pain, and have other neuropathic issues such as tingling and weakness in my hands and feet. Of course, I was supposed to see the neurologist in Chapel Hill last week but was not well enough to sit in the car at all.... In any event, I'm going to wait a few weeks. I need to have some kind of life outside of seeing all these doctors for a while. The docs can't seem to help my quality of life but sure do a good job of wrecking it. They mean well, of course, but it's just not working. In the meantime, I'd like to have a bit of fun and amusement....
On that note, we're headed to Oak Island next week while our floors get sanded and finished in Leland. That's going to be another mess to contend with, cleaning our house after the floor finishing, but I'm looking forward to having the whole process done. And excited about some laid back beach time with a good novel or two. The girls will be in camp down there next week too, which is good because they're already set to kill each other having been out of school for just one week! Thank God for summer camps.
I hope that everyone is enjoying their summer! Thanks for all of the assistance and prayers. I am sorry if I was not always a very chipper "camper" when people called after the LP. There's nothing like having no control of your own life, being flat on your back and unable to take care of yourself or do anything fun, to put me in a bad mood. The lack of control is a biggie... I have no control over anything these days despite my efforts to get my health back on track. And that is frustrating. So, I love you all and appreciate everything people did for me the past few weeks, but PLEASE don't ask me to talk about it any more... I need to think of something besides headaches, back aches, spinal fluid, nausea, and, oh yeah, cancer!
Love,
Sofie
My birthday party was canceled because I felt like crud. I could barely get out of bed that day; I was exhausted and had lots of back pain. I realized that the party would not be fun for me in that condition. So we canceled.
A couple of weeks later, I ended up in the hospital. Geoff and I, with the generosity of our church small group, had planned a "grown up weekend" away in downtown Wilmington. Again, I felt so lousy that we checked out of the Inn and I went to the hospital. Instead of a nice dinner and a bottle of wine, I enjoyed Dilaudid (sp?) and an IV. But, I got a lot of sleep and, with the exception of the 2 hour spinal MRI that was about as comfortable as lying on a sidewalk, without moving, next to a jackhammer, the hospital admission was not too bad of an experience.
Then, last week, I was subjected to a Lumbar Puncture or spinal tap where a radiologist removed spinal fluid from my back. Fun. They neglected to mention that I would then have the worst headache known to man for almost 2 weeks. Just getting out of bed left me nearly vomiting. My head and neck were pounding and pulsating with pain, my ears were ringing and I could not hear, and I felt nauseous anytime I was not flat on my back. So I missed our family's trip to Massachusetts and stayed in bed for a week. 10 days later, I'm a lot better but still break into a sweat when I am sitting upright for too long. Like right now. I tried to drive yesterday and, well, that was interesting. Anyhoo, I suppose I'm on the mend and am grateful for that.
The LP test was done to rule out metastases in the spinal fluid. I believe that they have done that, although my oncologist does not know why my white blood cell count was high. I need to see a neurologist to try and figure out why I still feel so lousy, have so much back pain, and have other neuropathic issues such as tingling and weakness in my hands and feet. Of course, I was supposed to see the neurologist in Chapel Hill last week but was not well enough to sit in the car at all.... In any event, I'm going to wait a few weeks. I need to have some kind of life outside of seeing all these doctors for a while. The docs can't seem to help my quality of life but sure do a good job of wrecking it. They mean well, of course, but it's just not working. In the meantime, I'd like to have a bit of fun and amusement....
On that note, we're headed to Oak Island next week while our floors get sanded and finished in Leland. That's going to be another mess to contend with, cleaning our house after the floor finishing, but I'm looking forward to having the whole process done. And excited about some laid back beach time with a good novel or two. The girls will be in camp down there next week too, which is good because they're already set to kill each other having been out of school for just one week! Thank God for summer camps.
I hope that everyone is enjoying their summer! Thanks for all of the assistance and prayers. I am sorry if I was not always a very chipper "camper" when people called after the LP. There's nothing like having no control of your own life, being flat on your back and unable to take care of yourself or do anything fun, to put me in a bad mood. The lack of control is a biggie... I have no control over anything these days despite my efforts to get my health back on track. And that is frustrating. So, I love you all and appreciate everything people did for me the past few weeks, but PLEASE don't ask me to talk about it any more... I need to think of something besides headaches, back aches, spinal fluid, nausea, and, oh yeah, cancer!
Love,
Sofie
Monday, May 17, 2010
Baptism and life!
Well, thanks to all of you who came to my baptism! What a special day. I'm going to try and upload a link to the baptism video so that any of you that were unable to attend can watch it. I feel like they did a nice job of presenting my story. Very special day! I was truly touched to have several people approach me (strangers) after the baptism to tell them what my story meant to them. Yesterday at church, a man told me that a friend of their family who was not a Christian watched the baptism, and that she is in similar circumstances. She was very moved by my tale, and hopefully it will inspire her to seek out God in order to get through her troubles. That makes it all worth it, really. I mean the cancer, not the baptism. It's all part of the silver lining -- helping to improve other peoples' lives through your own suffering. My life has improved, ironically, and I want to help other people to find joy in their own lives as well.
On the subject of gratitude, thanks to all who have helped out my parents with meals and rides. I cannot tell you what it means to all of us! My father can be very brash and abrasive but even he has been moved by all of the help they've received from people who are strangers to them but my friends. I have found that friends can really become like extended family which is helpful when your family is in as much need as mine is right now. I love you all!!!!!!!
Also, just a reminder of my 40th b-day party this weekend. It's Friday the 21st at 4 p.m. where we had a nice bash in 2008 on Oak Island. Unlike many of my friends, I am so excited to turn 40 and hope to have many, many more birthdays to come! Celebration of life, after all. Just remember to bring whatever you'll need to enjoy the afternoon! Happy Spring!
Love,
Sofie
On the subject of gratitude, thanks to all who have helped out my parents with meals and rides. I cannot tell you what it means to all of us! My father can be very brash and abrasive but even he has been moved by all of the help they've received from people who are strangers to them but my friends. I have found that friends can really become like extended family which is helpful when your family is in as much need as mine is right now. I love you all!!!!!!!
Also, just a reminder of my 40th b-day party this weekend. It's Friday the 21st at 4 p.m. where we had a nice bash in 2008 on Oak Island. Unlike many of my friends, I am so excited to turn 40 and hope to have many, many more birthdays to come! Celebration of life, after all. Just remember to bring whatever you'll need to enjoy the afternoon! Happy Spring!
Love,
Sofie
Monday, May 3, 2010
Baptism and birthday info
Good morning and happy Monday everyone. Just wanted to post my baptism info for anyone who wants to attend.
The baptism will be at Port City Community Church at 250 Vision Drive (off Cardinal Drive between Eastwood and Market Streets) on Sunday, May 9 at 4 p.m. If you want to sit near the baptism pool, go to the front left side of the church by 3:45 p.m. and sit in one of the front two reserved rows. This will be a normal church service and they usually do the baptism ceremonies after the first or second song. If you have children, you'll want to check them in early. Treasure Island is for K-5 grades and Grow Zone is for kids younger than that. We'll have Hope and Hadley in the service and then check them in to Treasure Island afterward. You may just want to check your kids in before the church service begins.
They'll show my video, which lasts about 3 minutes, and then baptize me. In the video I tell my "story" about why I'm getting baptized. Bring kleenexes! I'll change and rejoin the service. It should be really special. The service itself lasts about one hour and is very user friendly, if you've not attended before. Don't worry about issues with communion or anything, because we rarely have that, and they won't make you drink any kool-aid or anything;) Wear any clothes you want --it is very casual.
Also, FYI, my birthday party will be May 21 at 4 p.m. at 4911 East Beach Drive in Oak Island. You have to know me to come;) but otherwise all are welcome. Bring your own beverages, food, children, towels, sunscreen, etc. No Gifts. We're not providing anything except maybe some burgers and dogs for the kids. Just want to relax and enjoy everyone!
Take care and hope to seee you all soon!
Love,Sofie
The baptism will be at Port City Community Church at 250 Vision Drive (off Cardinal Drive between Eastwood and Market Streets) on Sunday, May 9 at 4 p.m. If you want to sit near the baptism pool, go to the front left side of the church by 3:45 p.m. and sit in one of the front two reserved rows. This will be a normal church service and they usually do the baptism ceremonies after the first or second song. If you have children, you'll want to check them in early. Treasure Island is for K-5 grades and Grow Zone is for kids younger than that. We'll have Hope and Hadley in the service and then check them in to Treasure Island afterward. You may just want to check your kids in before the church service begins.
They'll show my video, which lasts about 3 minutes, and then baptize me. In the video I tell my "story" about why I'm getting baptized. Bring kleenexes! I'll change and rejoin the service. It should be really special. The service itself lasts about one hour and is very user friendly, if you've not attended before. Don't worry about issues with communion or anything, because we rarely have that, and they won't make you drink any kool-aid or anything;) Wear any clothes you want --it is very casual.
Also, FYI, my birthday party will be May 21 at 4 p.m. at 4911 East Beach Drive in Oak Island. You have to know me to come;) but otherwise all are welcome. Bring your own beverages, food, children, towels, sunscreen, etc. No Gifts. We're not providing anything except maybe some burgers and dogs for the kids. Just want to relax and enjoy everyone!
Take care and hope to seee you all soon!
Love,Sofie
Friday, April 30, 2010
What a week!
We went on our FREE trip to DC last weekend sponsored by the Jack and Jill Late Stage Cancer Foundation, Southwest Airlines, and the W Hotel. It was AMAZING! We were treated like royalty by the hotel, and enjoyed a suite and adjoining room for the girls. I soaked in the deep tub in the suite overlooking the Treasury Building and adjacent to the White House:) It rocked! The hotel even paid for some of our wine and beer despite the fact that they initially said we were responsible for alcohol. I can't express how fun it was to see the monuments and the museums and to enjoy a very fancy hotel at no cost to us. The combined rate of those rooms was $1500 per night! Too rich for my blood, ordinarily. We bonded as a family and wore ourselves out walking around town.
I had a horrible doctor's appointment on Monday in Chapel Hill, however. Apparently, the people working at the hospital were inconvenienced by my attendance at my oncology appointment. I hereby apologize for making them do their job. My doctor is sweet and I like him, but he thought it was a good idea to recommend that I join a gym and get a personal trainer. Carrie Pages, the friend who accompanied me to the appointment and who has taught me pilates for almost 7 years, advised him that I was no couch potato and that I was not making up my news of extreme pain, numbness and fatigue and that lack of exercise was not an issue in my case. Of course, she said it better than that:) Talk about not listening -- I've told the guy for months that I remain somewhat active by walking and doing modified pilates to keep up my limited energy level and endorphins. Seems he's caught some of the Chapel Hill hospital disease of not wanting to listen or do his job. Must be catching.
Anyhoo, I got back in town and my father advised me that he was in the hospital in Wilmington and starting chemo the next day, having been diagnosed with stage 3 non-hodgkins lymphoma. WTF? My childhood family now consists of 2 people in active chemo treatment for cancer and an incontinent mother in the late stages of alzheimers. Nice, eh? If my faith were not so strong, I would need a padded room or an AK-47 to handle this. Geez. His spirits are good and we had a nice chat in the hospital room yesterday while we met with his doctors and got his chemo started. I'm collecting helpers for him on getting to chemo appointments if anyone is interested. They will also need meals. If you can help, please call Gladys at our law office at 251-8333. She's setting up a schedule for meals and rides to chemo. He's doing 6 cycles of chemo (including cytoxin and adriamycin, two of the nasty ones I got :( ), once every 3 weeks. Ugghh....... At least my chemo is oral.
God bless everyone. Please help if you can. Don't sweat it if you can't. Enjoy the wonderful spring weather if you can and thank God for all your blessings. Life is short, darn it. Can't wait for my baptism and birthday party!
Love,Sofie
I had a horrible doctor's appointment on Monday in Chapel Hill, however. Apparently, the people working at the hospital were inconvenienced by my attendance at my oncology appointment. I hereby apologize for making them do their job. My doctor is sweet and I like him, but he thought it was a good idea to recommend that I join a gym and get a personal trainer. Carrie Pages, the friend who accompanied me to the appointment and who has taught me pilates for almost 7 years, advised him that I was no couch potato and that I was not making up my news of extreme pain, numbness and fatigue and that lack of exercise was not an issue in my case. Of course, she said it better than that:) Talk about not listening -- I've told the guy for months that I remain somewhat active by walking and doing modified pilates to keep up my limited energy level and endorphins. Seems he's caught some of the Chapel Hill hospital disease of not wanting to listen or do his job. Must be catching.
Anyhoo, I got back in town and my father advised me that he was in the hospital in Wilmington and starting chemo the next day, having been diagnosed with stage 3 non-hodgkins lymphoma. WTF? My childhood family now consists of 2 people in active chemo treatment for cancer and an incontinent mother in the late stages of alzheimers. Nice, eh? If my faith were not so strong, I would need a padded room or an AK-47 to handle this. Geez. His spirits are good and we had a nice chat in the hospital room yesterday while we met with his doctors and got his chemo started. I'm collecting helpers for him on getting to chemo appointments if anyone is interested. They will also need meals. If you can help, please call Gladys at our law office at 251-8333. She's setting up a schedule for meals and rides to chemo. He's doing 6 cycles of chemo (including cytoxin and adriamycin, two of the nasty ones I got :( ), once every 3 weeks. Ugghh....... At least my chemo is oral.
God bless everyone. Please help if you can. Don't sweat it if you can't. Enjoy the wonderful spring weather if you can and thank God for all your blessings. Life is short, darn it. Can't wait for my baptism and birthday party!
Love,Sofie
Wednesday, April 14, 2010
My Cocoon
It's been a while since I've posted, I know. Geoff and I went to Chapel Hill at the end of March. They did a CT scan, which was a horrible experience in and of itself because I had a meltdown when faced with several mean people at the hospital (patients and employees). What fun to sit in the radiology waiting room crying while I drank the crap they give you for the contrast in the CT? I texted Geoff (who was waiting to meet with the coroner about one of his cases) and he rescued me. ANYWAY. Didn't want to do the darn scan to begin with and told doc as much. I have spine issues, not organ issues. My back hurts like crazy and I have neurological issues related to nerves around the spine, no doubt. Why not skip the CT and just do a full spine MRI? We did the CT anyway. Then doc told me I was right and we needed to also do a full MRI like I'd suggested. So we ended up spending 2 nights instead of one in Chapel Hill. All to learn that there was nothing on either scan that explained my worsening pain or neurological problems. He recommended a lumbar puncture where they remove some of your spinal fluid and test for cancer in the lining that surrounds your spinal column and brain to see if I have leptomeningeal mets.
They could not do it during our 3 day adventure in Chapel Hill. I'd have to come back next week. And have Geoff miss more work. And spend more time at the Cancer Hospital. After thinking about it, I decided not to have the procedure. Maybe not now. Maybe not ever.
If I have lepto mets, it's very dire. That would give me a life expectancy of between 6 weeks and 6 months depending on whether I opted for the very toxic treatment and radiation they offer or do nothing. After having no good experience from radiation, I don't think I'll ever have that again. But I could change my mind. Bottom line, I don't want the treatment they'd give me if I had lepto mets and I don't want to know if I have them.
It may be burying my head in the sand but I don't care. I started thinking about having such a diagnosis. I think those kind of bad prognoses are self-fulfilling. In other words, if I was told I had 6 months to live I'd live 6 months. No thank you.
Of course, I still feel like sh**. I've got worse pain, fatigue, and neurological problems. Finding it hard to pick anything heavy up with my right hand because my right thumb can't flex without a lot of pain. Weird neurological stuff -- tons of numbness, pain, etc and it's not symmetrical. I'm going to have to officially quit driving soon because my feet are getting numb and when I can't feel the pedals I can't drive. Blah.
So, I'm going to apply for social security disability. I'm going to barely work, other than doing the books and helping Geoff here and there with his work. I figured that I may as well get something for all those years I've paid FICA tax!
BUT, I'm happy. Strange, isn't it? I'm really at peace with all of this and my faith is carrying me through. I don't know why I feel as bad as I do but it doesn't really matter. I don't know what complication is causing me to feel this bad but it's ok. As long as I'm relatively comfortable for at least some of the day (usually between 10 a.m. and 2 p.m.) I'm content. The rest of the time I'll nap, relax, read, all that other stuff I've never had the time to do.
So now really dont' get mad if I don't return phone calls. I don't want to talk about this and I'm living on some alternate bizarro, oxycontin fed world. I want to socialize once in a while but most of the time, I just want to rest. Please don't feel sorry for me, life is good! And please don't take it personally. I honestly don't have the energy to be emotional about my relationships with other people right now.
Speaking of, we're going on a FREE trip to DC next week thanks to the Jack and Jill Late Stage Cancer Foundation in Atlanta. We're flying in, staying at a hotel NEXT to the White House (which usually costs $560 per night and up) and spending time together as a family. We're going on a tour of the White House and the Capitol, among other activities. (nap for me, of course). They gave us a camera to take pictures which we mail back to them and they put into a photo album for us. Fun! The hotel even gives you a free Acura MDX to drive while you're there. Don't worry, I won't drive;)
Got some good stuff coming up. It's like it's the "Spring of Sofie"! Hope to see you all at my b-day party. Remember, no gifts. Bring food, beverage of choice, children if you want, swimsuit, towel, and sunscreen. I will socialize that night but I may go to bed during the party. We'll see;)
They could not do it during our 3 day adventure in Chapel Hill. I'd have to come back next week. And have Geoff miss more work. And spend more time at the Cancer Hospital. After thinking about it, I decided not to have the procedure. Maybe not now. Maybe not ever.
If I have lepto mets, it's very dire. That would give me a life expectancy of between 6 weeks and 6 months depending on whether I opted for the very toxic treatment and radiation they offer or do nothing. After having no good experience from radiation, I don't think I'll ever have that again. But I could change my mind. Bottom line, I don't want the treatment they'd give me if I had lepto mets and I don't want to know if I have them.
It may be burying my head in the sand but I don't care. I started thinking about having such a diagnosis. I think those kind of bad prognoses are self-fulfilling. In other words, if I was told I had 6 months to live I'd live 6 months. No thank you.
Of course, I still feel like sh**. I've got worse pain, fatigue, and neurological problems. Finding it hard to pick anything heavy up with my right hand because my right thumb can't flex without a lot of pain. Weird neurological stuff -- tons of numbness, pain, etc and it's not symmetrical. I'm going to have to officially quit driving soon because my feet are getting numb and when I can't feel the pedals I can't drive. Blah.
So, I'm going to apply for social security disability. I'm going to barely work, other than doing the books and helping Geoff here and there with his work. I figured that I may as well get something for all those years I've paid FICA tax!
BUT, I'm happy. Strange, isn't it? I'm really at peace with all of this and my faith is carrying me through. I don't know why I feel as bad as I do but it doesn't really matter. I don't know what complication is causing me to feel this bad but it's ok. As long as I'm relatively comfortable for at least some of the day (usually between 10 a.m. and 2 p.m.) I'm content. The rest of the time I'll nap, relax, read, all that other stuff I've never had the time to do.
So now really dont' get mad if I don't return phone calls. I don't want to talk about this and I'm living on some alternate bizarro, oxycontin fed world. I want to socialize once in a while but most of the time, I just want to rest. Please don't feel sorry for me, life is good! And please don't take it personally. I honestly don't have the energy to be emotional about my relationships with other people right now.
Speaking of, we're going on a FREE trip to DC next week thanks to the Jack and Jill Late Stage Cancer Foundation in Atlanta. We're flying in, staying at a hotel NEXT to the White House (which usually costs $560 per night and up) and spending time together as a family. We're going on a tour of the White House and the Capitol, among other activities. (nap for me, of course). They gave us a camera to take pictures which we mail back to them and they put into a photo album for us. Fun! The hotel even gives you a free Acura MDX to drive while you're there. Don't worry, I won't drive;)
Got some good stuff coming up. It's like it's the "Spring of Sofie"! Hope to see you all at my b-day party. Remember, no gifts. Bring food, beverage of choice, children if you want, swimsuit, towel, and sunscreen. I will socialize that night but I may go to bed during the party. We'll see;)
Tuesday, March 16, 2010
I hate pain
Unfortunately, my pain lately has gone through the roof. I don't know what happened. It was slowly getting worse and I had to up my pain meds. Then, I had to up them again. When Geoff and I drove to Chapel Hill last week for my appointment, I was in so much pain (from the drive, mostly) in my lower back that I was in tears. Yuck! I actually got an x-ray on Friday because I thought I had a compression fracture in my lumbar spine.
But, there's no fracture. That would have actually been good news because they can inject cement into your spine to stabilize it and reduce pain. But now, I'm left with more of the ambivalent "we don't know what's causing your pain," but "it's probably some kind of cancer progression." But of course, it usually can't be explained by scans or bloodwork or tumor marker tests (because those are always great) so who knows what's causing it? Geez! Frustrating. I'm having yet another CT scan next week the day before my doc appointment on the 24th. The good news is Geoff and I get a night away from the kids. Yes! So what that it's for less than stellar reasons. We're still staying at the Carolina Inn so we can get a good dinner and hang out together.
That is truly the silver lining in all of this mess is that I get to spend time alone with my hubby going to appointments while driving and waiting, etc. Our busy schedules and his work and hockey life limit our time alone together. And forget about trying to have a conversation with him while the kids are around. I love those sweethearts but they have to ALWAYS know what we're talking about and chime in. So, that will be a nice "getaway." I'm warped, I know.
Don't forget about my 40th birthday party! I'm going to get out some invites for May 21 (a Friday) at Oak Island. It will be casual, BYOB, BYO food. I'm not going to stress about cooking. And absolutely no presents. I just want to relax, see the ocean and spend time chatting with friends over a good (few?) glasses of wine. Nuff said!
But, there's no fracture. That would have actually been good news because they can inject cement into your spine to stabilize it and reduce pain. But now, I'm left with more of the ambivalent "we don't know what's causing your pain," but "it's probably some kind of cancer progression." But of course, it usually can't be explained by scans or bloodwork or tumor marker tests (because those are always great) so who knows what's causing it? Geez! Frustrating. I'm having yet another CT scan next week the day before my doc appointment on the 24th. The good news is Geoff and I get a night away from the kids. Yes! So what that it's for less than stellar reasons. We're still staying at the Carolina Inn so we can get a good dinner and hang out together.
That is truly the silver lining in all of this mess is that I get to spend time alone with my hubby going to appointments while driving and waiting, etc. Our busy schedules and his work and hockey life limit our time alone together. And forget about trying to have a conversation with him while the kids are around. I love those sweethearts but they have to ALWAYS know what we're talking about and chime in. So, that will be a nice "getaway." I'm warped, I know.
Don't forget about my 40th birthday party! I'm going to get out some invites for May 21 (a Friday) at Oak Island. It will be casual, BYOB, BYO food. I'm not going to stress about cooking. And absolutely no presents. I just want to relax, see the ocean and spend time chatting with friends over a good (few?) glasses of wine. Nuff said!
Monday, March 1, 2010
YSC Conference and Selfishness
Last weekend I attended a wonderful conference for young women with breast cancer in Atlanta. While I expected to meet some young women who are also stage IV (fortunately this is rare in Wilmington) I was pleasantly surprised with the conference overall. The material presented was educational and helpful. They had an exhibition hall where I got to shop and spend too much $ on pink things. (I'll hopefully continue to wear these after the weekend hoopla dies down). I was mostly impressed and overwhelmed by the sense of love among the 900 plus participants. Cozy it was not. Shockingly, I felt like one of the older attendees. Seeing 20 year olds on crutches with no hair is extraordinarily sad. I was brought to tears during one session for women with advanced breast cancer when a very young looking woman mentioned she would like to have children someday. I cannot even imagine walking in her shoes. It is hard to put into words all of the benefits I got from this conference. I loved it, will try and go next year, and encourage anyone dealing with this to consider going just because all of the information and resources that are thrust in your face are nearly impossible to collect even in a major cancer center like Dana Farber or Chapel Hill. Wonderful!
If you've called me recently, I may not have returned the call. Please don't feel hurt or angered by this. It takes all the energy I have just to get through my day. I am working, taking care of 2 kids, running a business, and organizing a home. Sure, I've cut back my work hours. But we cannot afford to cut out my income entirely, or to have me go on disability, and I enjoy working and feeling "normal" for a few hours a day.
But all of you young moms out there surely understand how tiring your life is. Imagine adding chemo to that as well as daily pain issues and you will understand how tired I am by the end of the day. I try and work in the mornings when I have the most energy. I really am unlikely to talk on the phone during that time because I am very slow at my work these days. By 2 p.m., I'm ready to head back to bed. But of course, I can't because the girls have activities and need dinner. So, I'm not much fun to be around or talk to in the afternoon/evening. If I would rather read or veg out in front of the t.v., that's my perogative, I believe. So, I'm selfish now. It is nothing personal with you, trust me!
I've had lots of wonderful offers of help. But right now I don't think I need that. Try and understand that what I have is a chronic condition. It is not the flu and will not probably get any better (although I pray for a miracle every day). I want to spend time with our kids now. More than likely, a day will come in the near future (don't know when) that I cannot do anything and I will need help with everything. I'll round up the troops for help at that point. But for now, please appreicate my need for space and peace and quiet while I handle my day to day affairs. I'll try and be better about posting health updates on this blog.
On the topic of health, I had to take a Xeloda break because of the damage it did to my skin. I'm back on now. My lower back pain has worsened and I'm going up in my pain meds as a result. Don't know why that is but don't really feel like scanning either. Right now, I'm concentrating on trying to relax more. Dealing with scans and waiting for their results is not relaxing. I'll do scans again someday.
On other news, I'm scheduled for a baptism on May 9 at PC3 (I'll confirm that date later). I would love to have anyone and everyone come to that. I want to share my story in front of 1,000 or more of my "friends". (if you don't already know our church is huge). I believe that I have a story of great hope and love to share and want to express what a difference Jesus has made in my life. Don't worry all of you who don't go to church -- they won't try and "convert" you there. I just thought a lot of you would enjoy hearing my story and perhaps finding that, whatever YOUR problems may be, they can get better. Ironically, having my life blown apart by cancer has taught me a lot about life, love, and joy.
Sorry this is so long. I apparently need to post shorter blogs more frequently. Some days, however, I just don't have a lot of uplifting things to say. Trust that if I have any major news, I'll get Geoff or a friend to post here on my behalf. So, silence is not necessarily a problem.
Peace and love to all of my friends and family,
Sofie
If you've called me recently, I may not have returned the call. Please don't feel hurt or angered by this. It takes all the energy I have just to get through my day. I am working, taking care of 2 kids, running a business, and organizing a home. Sure, I've cut back my work hours. But we cannot afford to cut out my income entirely, or to have me go on disability, and I enjoy working and feeling "normal" for a few hours a day.
But all of you young moms out there surely understand how tiring your life is. Imagine adding chemo to that as well as daily pain issues and you will understand how tired I am by the end of the day. I try and work in the mornings when I have the most energy. I really am unlikely to talk on the phone during that time because I am very slow at my work these days. By 2 p.m., I'm ready to head back to bed. But of course, I can't because the girls have activities and need dinner. So, I'm not much fun to be around or talk to in the afternoon/evening. If I would rather read or veg out in front of the t.v., that's my perogative, I believe. So, I'm selfish now. It is nothing personal with you, trust me!
I've had lots of wonderful offers of help. But right now I don't think I need that. Try and understand that what I have is a chronic condition. It is not the flu and will not probably get any better (although I pray for a miracle every day). I want to spend time with our kids now. More than likely, a day will come in the near future (don't know when) that I cannot do anything and I will need help with everything. I'll round up the troops for help at that point. But for now, please appreicate my need for space and peace and quiet while I handle my day to day affairs. I'll try and be better about posting health updates on this blog.
On the topic of health, I had to take a Xeloda break because of the damage it did to my skin. I'm back on now. My lower back pain has worsened and I'm going up in my pain meds as a result. Don't know why that is but don't really feel like scanning either. Right now, I'm concentrating on trying to relax more. Dealing with scans and waiting for their results is not relaxing. I'll do scans again someday.
On other news, I'm scheduled for a baptism on May 9 at PC3 (I'll confirm that date later). I would love to have anyone and everyone come to that. I want to share my story in front of 1,000 or more of my "friends". (if you don't already know our church is huge). I believe that I have a story of great hope and love to share and want to express what a difference Jesus has made in my life. Don't worry all of you who don't go to church -- they won't try and "convert" you there. I just thought a lot of you would enjoy hearing my story and perhaps finding that, whatever YOUR problems may be, they can get better. Ironically, having my life blown apart by cancer has taught me a lot about life, love, and joy.
Sorry this is so long. I apparently need to post shorter blogs more frequently. Some days, however, I just don't have a lot of uplifting things to say. Trust that if I have any major news, I'll get Geoff or a friend to post here on my behalf. So, silence is not necessarily a problem.
Peace and love to all of my friends and family,
Sofie
Thursday, February 11, 2010
Facebook not for me anymore
In case anyone was wondering, I deactivated my Facebook account. I did not "unfriend" you. For a while now, I've felt like I did not really have anything in common with half of the 200 or so "friends" I had on there. Tidbits like "I'm so great because I did this, or that..." Not to put down anybody who takes the time to read this blog (thanks!) and who also loves Facebook. I've been a fan, for sure, of FB for all the real friends I've reconnected with on it.
But the bra color thing just sent me over the edge. Not to offend any of the few people that thought it was cute to send me the message about posting the color of my bra on FB to show how many people are "aware" of breast cancer. Seriously? If I'm not aware of it, I've had my head so far up my ass for the past 2 1/2 years I'd never need to have a colonoscopy. Should I have posted that my bra color is black and comes with a handy dandy silicon-made removable breast? Really? I don't think so. Not that I'm losing my sense of humor or anything but I did not take that one too well. I also did not think that anyone would really want to hear on my FB updates that I feel like puking or would love to sleep for 48 hours straight, or, this is a good one, are there any of my FB "friends" willing to drop by my parents' house in Burgaw to empty my dad's jar of urine? See, on top of everything else, my dad broke his back and was bedridden. So, the family and I trekked up there one weekend so that I could provide opiate pain relief for him b/c he was too stubborn to see a doctor and get some of his own. And, BTW, my mom is walking around the house with alzheimer's mumbling to herself and if you happen so see her walking across the highway they live on, try not to hit her with your car. Wouldn't that have been catchy and witty for a FB update?
Anyway, things seem to be turning around a bit for everyone. Dad's on the mend. I'm getting used to chemo although my back pain is not improved at all. That's another story. Note that I did not give my dad ALL my opiate pain relievers;) I'm not that crazy.
Opus is doing well and growing. As are my other children -- except my husband's not growing though;)
Happy Valentines Day to all! Don't get all caught up in the commercial BS of this holiday but do remember to tell your loved ones how much they mean to you. Speaking of, to all my REAL friends and family dedicated enough to read all this mess "I love you too!"
But the bra color thing just sent me over the edge. Not to offend any of the few people that thought it was cute to send me the message about posting the color of my bra on FB to show how many people are "aware" of breast cancer. Seriously? If I'm not aware of it, I've had my head so far up my ass for the past 2 1/2 years I'd never need to have a colonoscopy. Should I have posted that my bra color is black and comes with a handy dandy silicon-made removable breast? Really? I don't think so. Not that I'm losing my sense of humor or anything but I did not take that one too well. I also did not think that anyone would really want to hear on my FB updates that I feel like puking or would love to sleep for 48 hours straight, or, this is a good one, are there any of my FB "friends" willing to drop by my parents' house in Burgaw to empty my dad's jar of urine? See, on top of everything else, my dad broke his back and was bedridden. So, the family and I trekked up there one weekend so that I could provide opiate pain relief for him b/c he was too stubborn to see a doctor and get some of his own. And, BTW, my mom is walking around the house with alzheimer's mumbling to herself and if you happen so see her walking across the highway they live on, try not to hit her with your car. Wouldn't that have been catchy and witty for a FB update?
Anyway, things seem to be turning around a bit for everyone. Dad's on the mend. I'm getting used to chemo although my back pain is not improved at all. That's another story. Note that I did not give my dad ALL my opiate pain relievers;) I'm not that crazy.
Opus is doing well and growing. As are my other children -- except my husband's not growing though;)
Happy Valentines Day to all! Don't get all caught up in the commercial BS of this holiday but do remember to tell your loved ones how much they mean to you. Speaking of, to all my REAL friends and family dedicated enough to read all this mess "I love you too!"
Thursday, January 21, 2010
Xeloda helping? And diversions....
Well, the Xeloda seems to be helping. I've noticed improvement in my left hand as far as having sensation and less of the waking in the middle of the night with shooting pains. So, I'm optimistic that it's helping. The back pain has not improved much at all but I'm just starting round two of this chemo so it's early yet.
I lost my mind and got a puppy. His name is Opus. Yes, largely named after the wonderful and expensive wine Opus One. He's Opus Two;) He's lovely and follows me around EVERYWHERE. It's fairly insane to have adopted him only 4 days after putting our old dog, Daphne, to sleep. My friends generally think I'm crazy but a few understand. I just needed to think about something other than cancer, feeling sick, and (gasp) death. Not that I'm anywhere near that but stage IV cancer brings the grim reaper to your mind more than most would like. Opus is a wonderful diversion from all of that horrible mess and is absolutely adorable. Opus Two looks like the puppy in the Cottonelle commercials. Love him! So, I'm now exhausted, sleep deprived and busier than ever. But I'm also loved unconditionally by this fairly portable and super cuddly walking companion. Heaven!
The urgency to adopting him was that the Robeson County Animal Shelter is a high-kill shelter. They have TONS of puppies needing to be adopted and apparently they euthanize them shortly after receipt. VERY sad place, even for the desensitized. So, if anyone needs a new pet, check it out but bring your tissues. It's in St. Pauls about 80 miles from Wilmington.
Blessings and love and puppy kisses to all!
I lost my mind and got a puppy. His name is Opus. Yes, largely named after the wonderful and expensive wine Opus One. He's Opus Two;) He's lovely and follows me around EVERYWHERE. It's fairly insane to have adopted him only 4 days after putting our old dog, Daphne, to sleep. My friends generally think I'm crazy but a few understand. I just needed to think about something other than cancer, feeling sick, and (gasp) death. Not that I'm anywhere near that but stage IV cancer brings the grim reaper to your mind more than most would like. Opus is a wonderful diversion from all of that horrible mess and is absolutely adorable. Opus Two looks like the puppy in the Cottonelle commercials. Love him! So, I'm now exhausted, sleep deprived and busier than ever. But I'm also loved unconditionally by this fairly portable and super cuddly walking companion. Heaven!
The urgency to adopting him was that the Robeson County Animal Shelter is a high-kill shelter. They have TONS of puppies needing to be adopted and apparently they euthanize them shortly after receipt. VERY sad place, even for the desensitized. So, if anyone needs a new pet, check it out but bring your tissues. It's in St. Pauls about 80 miles from Wilmington.
Blessings and love and puppy kisses to all!
Thursday, January 7, 2010
Latest developments
I just realized today how long it's been since I've posted. Sorry!
Yesterday, Geoff and I met with my new oncologist at UNC Chapel Hill -- Dr. Muss. He was highly recommended by Dr. Winer and they are friends as well. So they can and will consult on my treatment. Which is good because my health situation is declining.
Despite all of my fun travels in December, my cancer has progressed. It's now in almost every vertebrae in my back including a a new spot -- all over the cervical spine. This explains the stiffness in my neck and may explain my increasingly numb left hand. In the middle of the night, I wake up with shooting pains in that hand. Last night, I was almost in tears it hurt so bad. I could not get the pain under control unless I slept with my hand hanging off the side of the bed! Weird. Doc does not know if that's caused by a cyst they found near my spine or if it's another central nervous system issue. In any event, it's scary. Getting tough to use my left hand sometimes and I DON'T like that.
Probably even more troubling, my back pain has gone through the roof lately. That's in the lower back where I received radiation a few short months ago. So glad I did that treatment for nothing. Based on my pain level, Dr. Muss believes that the cancer is progressing in my body (which is confirmed by the scans). I just feel poisoned inside. Yuck!
So, I'll be starting chemo in the next few weeks. Hopefully, I'll be doing Xeloda which is a pill chemo. Although I won't lose my hair, it has some nasty GI side effects and would be on a long term basis, or at least one year. As Dr. Muss said a few times yesterday, they can't cure me now. (tough to hear). And it's not just about giving me the longest life possible, they also want to consider quality of life. Of course, we were reminded that it's not a good sign that there was such a short time between my original diagnosis and my mets diagnosis (less than 2 years). Again, hard to hear.
Well, we're trying to stay positive. None of this news was surprising or anything. Sometimes, though, it's still a surprise. Sorry I don't have any great positive spin to put on all of this. Just maybe that we all need to count our blessings, appreciate our loved ones, and not stress about how much silly money we all just spent on the holidays. God bless.
Yesterday, Geoff and I met with my new oncologist at UNC Chapel Hill -- Dr. Muss. He was highly recommended by Dr. Winer and they are friends as well. So they can and will consult on my treatment. Which is good because my health situation is declining.
Despite all of my fun travels in December, my cancer has progressed. It's now in almost every vertebrae in my back including a a new spot -- all over the cervical spine. This explains the stiffness in my neck and may explain my increasingly numb left hand. In the middle of the night, I wake up with shooting pains in that hand. Last night, I was almost in tears it hurt so bad. I could not get the pain under control unless I slept with my hand hanging off the side of the bed! Weird. Doc does not know if that's caused by a cyst they found near my spine or if it's another central nervous system issue. In any event, it's scary. Getting tough to use my left hand sometimes and I DON'T like that.
Probably even more troubling, my back pain has gone through the roof lately. That's in the lower back where I received radiation a few short months ago. So glad I did that treatment for nothing. Based on my pain level, Dr. Muss believes that the cancer is progressing in my body (which is confirmed by the scans). I just feel poisoned inside. Yuck!
So, I'll be starting chemo in the next few weeks. Hopefully, I'll be doing Xeloda which is a pill chemo. Although I won't lose my hair, it has some nasty GI side effects and would be on a long term basis, or at least one year. As Dr. Muss said a few times yesterday, they can't cure me now. (tough to hear). And it's not just about giving me the longest life possible, they also want to consider quality of life. Of course, we were reminded that it's not a good sign that there was such a short time between my original diagnosis and my mets diagnosis (less than 2 years). Again, hard to hear.
Well, we're trying to stay positive. None of this news was surprising or anything. Sometimes, though, it's still a surprise. Sorry I don't have any great positive spin to put on all of this. Just maybe that we all need to count our blessings, appreciate our loved ones, and not stress about how much silly money we all just spent on the holidays. God bless.
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