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!
Tuesday, March 16, 2010
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
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