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
Friday, April 30, 2010
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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