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
Monday, August 2, 2010
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;)
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