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