I just read three new comments from people and I want to say how grateful that I am for everyone's support. Knowing that people love and are thinking of me is some of the best medicine that I can have, along with prayers and healing thoughts.
Yesterday was a good day, I went to pick up a friend who came home for a break from training as a trucker. We piled into the car and drove to Indiana to pick her up. That was fun, I haven't done an impulsive road trip like that for a while.
Once we got home last night though, I was very tired. I figured that it was due to the late hour. Well, once Deb flushed my PICC line and I crawled into bed, within an hour or so, I started shaking uncontrollably. I felt like I had no control over my muscles. It started with small tremors, then just kept getting stronger. Then, of course, my muscles tightened up to try to get control of myself, which made it worse. The more I tried to control it, the worse it got.
Then, I started having trouble breathing. I knew totally that it was an anxiety reaction to the being out of control in my body. Using my inhaler didn't help at all, because I couldn't get myself to slow my breathing enough to get a deep breath of it.
It's really weird, feeling all of these things happening, knowing that they are happening, yet having no control over it. Even though I was completely concious of the fact that the breathing had to do with panic, I couldn't stop it. I even told Deb that I knew that was what was happening. I tried to slow my breathing. Deb had me breathe into a paper bag, which just made me more anxious because I felt clausterphobic. I pushed her away while at the same time asking her for help. Some part of my head knew that I wasn't being rational or reasonable, but I couldn't stop my reactions. (Of course, I was still shaking uncontrollably, feeling cold during this whole rational/irrational conversation in my brain.)
Deb kept trying to take my temperature in my armpit, but the thermometer fell out of place several times because of the shaking. To me, my skin didn't feel hot, but to Deb it did. Evidentally, the thermometer finally agreed wtih her when the reading came back 102.2 once I was able to hold it in my mouth for long enough (the shaking even threatened this method of measurement). Deb wanted to take me to the hospital to get checked out, but I wouldn't let her.
Finally, she got me tucked in enough to keep me covered and slightly calmer, breathing still not normal, but better. After a few minutes, I jumped up again and ran to the bathroom. I threw up three times in a row, then seemed to feel better. I moved out to the couch for an hour or so, until the shaking totally stopped, then went back to bed.
I only slept for short amounts of time per attempt to sleep. I got up around 7:30 to call someone that I had agreed to do a worm composting presentation for today so that I could cancel since I didn't know what was wrong and hadn't slept. Luckily, she had contingency plans, knowing that I was going through chemo and had made sure to have something else lined up during that time.
I went back to sleep on and off until around 11:30 ish, then got up and lazed around until radiation in the afternoon.
My temp was 99.3 at 4pm. When I called the Dr. office, they said to not flush the PICC line today and that they would check it out in the morning when I get there for chemo. Deb had warned me that the fever may be due to an infection in the PICC line, since the fever spiked right after flushing it last night. The nurse at the Dr. office said the same thing, and that they may need to pull the PICC line.
I can't go through that again. I am still getting flashbacks about how painful and invasive it was when they put the first one in. I keep going over and over in my mind how it felt when they kept trying to feed the guide wire into my right arm and how the lidocane that they shot ito those areas didn't seem to numb it up at all. (The IV team nurse a)hadn't given it any time at all to work and b) had only put it straight into two subcue points instead of spreading it under the tissue layer the way it should have been done and was eventually done by the radiology team.) When I think about it, the anxiety starts up all over again and the thought of them having to start all over again terrifies me. (Almost 3 weeks later and I still have some of the bruising to show for it.)
The PICC line that they finally did get in didn't hurt so much, but the trauma of the first several tries makes my muscles clench and my fear jump into full view. When I got off the phone with the nurse at the doctor's office, I started crying and told Deb that I can't go through that again. She let me cry a minute and said that we would make sure that they put a port in next time instead of a PICC line because of all the trauma. My guess is that the insurance company will have something to say on that score. (I found out this week, that even though ports are sugrically installed, that insurance company's won't pay for them to be removed in the hospital, only as an in-office procedure. I hate it that our medical system is dictated almost solely on money instead of quality of care. Of course, those of you who know me know that I could wax on and on about that subject, but I won't here. I AM very grateful, that I do have health insurance to take care of most of these expenses for me and that my insurance is good enough that I shouldn't get stuck wtih thousands of dollars in copays, just maybe in the low hundreds because of the frequency of doctor visit copays that I have to pay. Not that big of a deal in the long run.)
So, now I'm sitting in bed, watching tv, writing this entry in the blog and waiting to see if my temperature is going to skyrocket again. Deb said that if this happens again, she is not giving me an option. She is taking me to the hospital so that they can do cultures to see if I am growing some kind of infection. I hate hospitals. I'm determined not to spike a temp again. We'll see.