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;)
Subscribe to:
Posts (Atom)
