Laying here in bed at 3 am...obviously NOT sleeping. Figured I could share how this week went. Instead of starting into the back of my eyelids being frustrated that I am awake, I will be grateful that I am just uncomfortable at the moment, and not in pain. That is a huge improvement over the last couple of days. I also love that I can blog from my phone!
It all started out great this week. Tuesday's treatment went well. My friend Brandy took me and I didn't have any alarming reactions. Just mild things like fatigue and slight fever that I can pretty much sleep off with a nap. I taught my Zumba Fitness class that night and I felt like my energy was pretty good and class went well! I get very encouraged by that! Sometimes my breathing is affected, but I can usually use focus to get past that.
Then Wednesday came. Oh boy. See, they increase the doses of both of my medicines each time I go until we reach full dose. So I really never know what to expect. Always changing. On wednesday I was with Kerry, and I was having some of the harder reactions that I had experienced last week.
The PME is what they call a "push" because it simply gets pushed through my port. Takes about 5 seconds. But the reaction hits about an hour later and can be wicked. Happened once last week, and again on Wednesday.
First comes the hot/cold feelings. It is interesting because I start to feel very cold and my body will shake. The shakes can be kind of alarming because you can't control it and they can get going pretty hard. I put socks on (because Arizonans typically don't wear socks unless forced to) and wrap up in a blanket. That's the cold part. The hot part is that I start to run a slight fever also.
The second part of my reaction to the PME is that I hurt. I hurt all over. Flu-like muscle pain x's 10, that goes deep into the bones. I feel it from my face to my toes. Kerry, being frustrated sitting there watching my writhe around in my chair, started to massage my back and shoulders. This proved to be a great help! I was able to relax and distract my brain long enough to avoid taking pain medication. Which, if you know me, I will only use as a last resort. Thank goodness for Kerry's wonderful idea!
Then there is the second medication that I get called Polly MVA. It is given as an IV drip and takes about 2 hours. This is the one that brings the fatigue and usually a mild headache. I use a homeopathic medicine to help ease the headache and again, just try to relax.
So, even with all those reactions, I made it through treatment ok and after a few hours of being home I started to feel what I call "functional". I'm not totally useful, but I am happy and can do most things for myself. Cook, drive, etc. It was good timing too because the first fundraiser for me was last Wed.
Brandy put on a super fun Lia Sophia jewelry party. I was looking forward to it. I went and had a great time, although that's when the worst headache of my life started. I didn't know it would be though. As I started to feel my head hurt a little I just thought I was tired and needed to rest. So I sort of ignored it. I don't like to let how I feel control too much of my life. Yep...I can be a pretty stubborn girl!
So I stayed. Probably a but longer than I should've, but again...stubborn. Once I got home (no I didn't drive) things did not improve. Sleeping was something that I wanted badly, but I only got an hour at a time. The pain in my head and face were so excruciating it made me nauseous. I couldn't walk, only slowly crawl. At this point we took out the strongest pain medication that we have. 800 mg Ibuprofin tablets. Didn't even touch the pain. I was starting to panic as I could see no end to my suffering. Thank goodness I wasn't alone. My sweet Jess was awake all night too. Trying to help me, but of course I could find no relief. There was nothing he could do but be there for me.
Eventually the night ended and Thursday came. The pain was slowly starting to ease up, but it took about 4 hours for me to feel will enough to get out of bed. Jess stayed home from work and got the kids off to school. I got better and better as the day went on and, though I didn't make the decision easily, I went ahead and taught Zumba Thurs night. Teaching lifted my spirits and made me feel strong. I felt like it was a miracle that I taught at all, let alone that it actually went well!
Friday. Always a day to look forward to. For me it's my last treatment of the week. But unfortunately it was a near repeat of Wednesday, except the head pain came on strong before I even left the office. Got some string pain medication in me right away this time. I was so scared to feel the full wrath of it again. Because of the medication and the fact that it still didn't take away ask my pain I got a sub for my Friday night class. I appreciate so much when a friend of mine subs for me, but I do try to avoid it at all costs. Thank you Ana for subbing and also to those who still went to class. Means a lot to me.
So that brings me to now. Still relying on pain meds and not sleeping (which is weird because the pharmacist said it WILL make me sleepy). Hoping that everything goes well with me today so I can go to a Zumba fundraiser being held for me in Phoenix.
Whew! This post was longer than I intended it to be! Well, going to try to rest before I have to get out of bed. Hoping to fall asleep for a quick nap. I hope, I hope!