Confusion

 I know it's been so long since I've written. I've been in a whirlwind of confusion an honestly, I just haven't been able to get myself to write. I do better mentally when I keep myself distracted, so sometimes writing about it makes me focus too much on it. Although, writing about it seems to be a form of therapy as well.

Here's an update as of my last post.

December 4th I had bone and CT scans.  They came back mostly positive.... He saw some calcification on my liver mets which means it's dying. bones were stable, no new mets and overall looking fairly good.

A few weeks later, I woke in the night with pain in my right side (liver) It was bad enough to keep me awake. The next night it happened again and when I turned, I had a sharp stabbing pain there,

I called the the Doc, but, of course, it was the week of Christmas and he was out for the week. His "fill-in" had me get an ultrasound on my liver.  So a few days later, Christmas day, I saw the report on my patient portal and it said I had a new lesion in my left lobe that wasn't seen clearly on the prior CT scan and it seemed my right lobe tumor had grown significantly, but the radiologist and later my Doc. said it's hard to say because of the different machines used. CT vs. ultrasound.  So I just went in a downward spiral emotionally. My thoughts were all over the place. Xeloda had stopped working, nothing is going to work, you're going to die this year. Just really negative and hard as I tried, I couldn't seem to help it. I did all the things I know to make myself come out of the hole, but I just couldn't. Finally, a priesthood blessing has helped the most.

So this is where all the confusion comes in.  After looking at my ultrasound, etc. on Jan. 4, he wanted to see my tumor marker numbers.  When we looked at it, one had come down a bit and one had come up a bit. So he's thinking that Xeloda is working for everything except liver, so wait until Feb. and see the numbers and then we'd possibly do radiation on the liver.  So this has been my state of mind for 3 weeks.

2 weeks ago, along with the discomfort in my right side, I started getting new pains. twinges, discomfort in my left abdomen. So that is NOT liver related.  Now my mind started going to "Oh it's spreading to my spleen or pancreas and it's spreading all over my body super fast ( I had a friend that died within weeks of finding she had cancer, so I get scared it's going soooo fast)

So my appointment is still a week away, but this morning, needing some peace of mind, I called the nurse....which I had to call anyway to check on my insurance and order labs, etc.  I told her of the new pain and if it's something he would want to see me earlier for or ???????

So she looked at my scans and my bloodwork and said both my markers were down considerably.

So in confusion, I just checked my patient portal and it does show both of them down and then the graph that you can see kind of skips over the last numbers as if they're not accurate.

So, yeah I don't get it and I don't know what's going on in my abdomen, but I feel a bit better mentally seeing the new marker numbers but confused because it's different than what we talked about with him 3 weeks ago.

So, here I am reporting the details and where I'm at.  I still have side effects, although Esplin lowered my dosage. Things are just a little bit better in all the areas. Still annoying and I hate all the side effects, but just a tad bit more tolerable.

Hopefully, I'll be good and update after my appointment next week.

p.s. my hair is filling in nicely. I look like a boy, but that's progress!

Chemo update

So I've had 2 infusions of Taxol now.
The first time I went, they gave me an infusion of Benadryl and a steroid before the Taxol.
The Benadryl made me so jittery. I couldn't stop moving. I was up and down and all over the place! It must be what an addict feels like when they need their fix or something.  It was so awful. It lasted about an hour and then I crashed.  Slept until the nurse woke me up telling me I was done. She made a note to give me Claritin from now on instead of Benadryl.

Because of Thanksgiving break, they were closed on the next Friday and I had an appt. with Esplin on the next Monday anyway, so my treatments will now be on Mondays.

So far, I come home and within an hour it hits.  I don't even know how to describe what I feel,  I just feel crappy.  Head hurts, body achey.  I feel beat up and well,.....like I've been poisoned. Which I have.

The next day is about the same.  By Wednesday I think I'm feeling better so I get up and do stuff and then I realize that I've pushed myself too hard. (showering and getting ready for the day)

Thursday feels a bit better, but I just feel blah.
I hope I have a few good days Sat and Sunday before I go back on Monday.

I went wig shopping yesterday. I dragged my friend Lynsey with me. She's a great friend and happens to also do my hair.  I was freaking out and just needed someone with me. 
It wasn't so bad after a bit, but at first I was really freaked out.  I put on some scarfs and stuff and just looked like Cancer.  I found a wig that actually looked a lot like me. Then I found what they call Halos.  You wear them under a hat and the hair sticks out so it looks like you're just wearing a hat and not bald.
I'm still holding out hope that I will keep my hair OR that maybe it will just thin. Nothing has happened yet, but it's still early,

Emotionally, I haven't been doing too well. I'm sure feeling sick has a lot to do with it.  I've been very hopeless, weepy and irritable.  I keep feeling like this is it and I'm never going to feel "good" again. I feel like it's not going to work.
I've also been having tons of back pain and can't stand or walk for very long.  I'm scared it's going to break any second.  I've heard of women just rolling over in bed and they break their back or neck or whatever.  It feels like that to me. my lower back really really hurts and it's scary.

My kids have all been having a rough time.  The younger two are crying and stressed a lot. Also needy.  Haeli always seems to handle things well, but I'm afraid that she'll keep it in too much.  Maili has struggled a lot.  They all say that it is easier to forget I have cancer when I don't look or act sick.
I'm laying around a lot and with most likely losing my hair, it will be tough on them.
I told Kinli she could draw a face on the back of my head and she didn't like that at all. I thought it was funny.

Being the Holidays has made missing my mom all the more difficult and on the 23rd it will have been a year since she died.  I don't even know where this year has gone.  I've been in a fog all year and don't remember much of what has happened except for Cancer.

I'm not handling this very bravely like I would like.  I'm a mess and it's been hard. 
For anyone that reads this,  I really need your prayers.