Just dropping a note after a very long break from blogging. I appreciate anyone still wandering through to check in.
I have had a rough couple of months, but am coming to the end of a several obstacles.
1) Radiation - FATIGUE, wew. But you have to keep in mind your body is processing a LOT, and also healing healing healing. My bones had holes in it, so it needed a LOT of energy to fill those holes in with scar tissue, which is much stronger than tumors. Still in the process of healing, but not the horrid, can't keep my eyes open fatigue. That is passing.
2) The RASH - the mystery rash that took me DOWN. Head to toe. Then to eyes swelling took me to the ER mid January. Which led me to excessively high doses of prednisone. Me and predisone equals disaster! It was a horrid horrid horrid ride. Scary. And with that drug, you cannot just pull off of it. So it took a couple of weeks to step down slowly. Now that that is done...
3) I am coming round. Slowly. It feels like I get my head above water now for longer and longer periods of time. And the energy that is there is new, clear, fresh. I get so excited. But this makes me a little bit more bi-polar-isque. When the pain hits, or chemo I have to hold very very tight to the memory that this is just CHEMO, not cancer talking. But honestly, I get a little scared and a little irritated, and feeling like I am drowning. I just want to keep my head above water.
But at least now, I have several days a week I have good positive energy again. And for good reason. Which brings me to bullet number 4.
4) My counts are still dropping! From 198 a month ago, to 85 this week. GOOD TREND.
Which now brings me to FAQ:
1) Q Am I still on chemo? A Yes!!! My comments are only about wanting to off chemo, hoping to be off - if this drug works wonders. So I am now into month - I dunno, let me count.....TEN. I hear people in the waiting room talking about 6 weeks like it is hell. So something inside has to turn off, be kind of chemo numb - and take life where you can when you can. which leads me to....
2)Q When I read you posts, or see you, you look good, or sound happy? But you are having a hard time...what is really going on? A BOTH. I am having a really tiring, tiring two months, but I take the good time where I can. And usually I end up crashing and recouping for it. It takes all I have in me over the two months to be seen. So when I DO get to get out and do something positive, I REVEL in it. Because it like a thirsty horse being taken to water. I also tend to focus ahead on why I am doing all of this and what I could be doing if I get better. Otherwise, dear God, life would be sooooooooooo depressing.
3) Q Do you still need help. A Yes. Even though Jim is close now, to keep him balanced and not burnt out (imagine being the primary care person for someone who is going through something this intense for two years!), I do still need rides and help. Not as much. But yes, especially the rides. Bug needs to get out of this intense environment and go have fun. Going to the mountains, pick her up on the way. Going hiking? Take the girl along.
Then there is the biggest issue of rides. That is the single most helpful thing. If you have a Monday morning free, and can take a 20-30 minute trek out here, and take me in the hospital (20 minutes) that would help soooooooooooo much. Jim then picks Bug up, and then me on the way home.
I am climbing out of a very hard time. I have other things, that for privacy reasons, I do not post here because it isnt about me. But it greatly influences my life. But I won't post it here. This isn't a place to put other people on display. So hopefully, this other part of my life will find closure and it's new direction and I can get some stability.
So yes, i am happy and sad and anixous, and hopeful and ALL if it. Sometimes all within hours of each other. Pain levels can really effect my positive/negative outlook. So can other stressors. So please don't think of me as above it all and managing it all sooooooooo well. I am doing what I have to do to get by, and stay on me feet and keep my daughter healthy, happy, and safe.
I do feel like I am reemerging. On the verge.... getting there. :) 89 ;) 8....9.....getting there. But by no means done.
P.S. By the way. The blog is doing well. I am amazed at how many people are reading this for it not being advertised in any way. And I do see a few faces now following I dont' know. So if you are a reader, (following or not), would you please maybe post a comment on why you follow, that way I can maybe write more to what you might be wondering about, or hoping to learn. :) Thanks!