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!

Learning my limits

I had a mini break down last Monday as the negativity was building for a couple days. So I called Uncle Lynn in tears.
I described to him how I'm trying to eat right and exercise, but how some days I hardly walk down the street and by mid-day, I can tell I've done too much and I'm pretty worthless the rest of the day.
The hardest part about that, is feeling completely out of control of what I can and cannot do and even knowing what that is.
So he challenged me to start making a record of how far I go on a walk or whatever exercise, and note how I feel later in the day. Which I realize is more about my feelings of control than it is about my exercise.
So, my efforts to record and take note were kind of thwarted as I went to BYU's Women's Conference on Thursday and Friday.  You end up doing more walking than you even realize you're doing and Thursday evening I was super tired, but Friday evening I was downright ill.
This fatigue is different than any I've felt before and it's hard to describe. I'm fatigued when I wake up even though I'm rested. But as the day goes on and I'm either physically or emotionally/mentally busy, it drains me to a point that is way past hitting my wall. I cannot think, I cannot function, I cannot do anything and it makes me nauseous.
So Friday evening I just went to bed and Kevin took care of everything. Saturday wasn't much different and I tried to rest, but I just want to fertilize my dang strawberries. (which I didn't do) Again by dinner time, I was nauseous and exhausted.
I've thrown up a few times the past few days and wonder if it's just my body reacting to fatigue, the chemo levels are higher or if it's because I kind of slacked on my water intake the past few days to help flush the chemo.

I'm paying attention, but don't feel any closer to knowing my limits and I think they may be different depending on the day. So it's quite frustrating. I'm going to try better to keep a record and maybe I'll see patterns or something?