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!

Infusions

So as I posted last time, I went in on Wednesday and got my first of many Zometa infusions. It's a bone strengthener and they give it to you via i.v.  When I asked Dr. Esplin about the side effects, he said none with a caveat that some people complain about bone aches for a few days.
Wednesday night I had a hard time sleeping because both my thigh's were aching. Nothing really new, and I woke up feeling okay. By 10:00 I was in some serious trouble. I hurt all over my body, I had chills, low grade fever, flu like symptoms, my head literally stung as well as every inch of me just hurt.  I managed to make it to Kinli's 1st grade program and then I was down for the count.
I slept on and off with the help of Tylenol, but it only helped slightly.  I felt so so terrible. The next morning I still felt crappy and a call to the Dr. and a google search confirmed that many people feel this way with their first infusion and it supposedly gets a bit better each time.  I stayed in bed until Maili's voice recital and then I hopped right back in. I do feel much better today, but still feel sore. My left calf and ankle started hurting even a bit before the infusion and I have had issues with it on and off.  Sometimes I feel like I'm faking the pain because it hurts one minute and I'm limping and the next I'm fine. I feel like a kid trying to get attention.
They didn't scan past my mid thigh, so I don't know about cancer down there, but I'm pretty sure it's there.  I also forgot to tell Dr. Esplin about the pain in my chest wall. It hurts when I breath deeply, but is better when I have the support of a bra. I'm sure there's cancer on the chest wall under where this whole thing started.

The whole thing has made me super weepy, emotional and depressed the past few days. I HATE Cancer and I HATE that is part of my life forever. I am still trying to get to acceptance, but it's a hard pill to swallow (pun intended)

I feel like cancer has taken so much from me and I'm angry. You know when you wake up and remember your bad dream?  Everyday I wake up and remember I have cancer and it stings every time.

I hate when I don't feel good because I think it stresses and worries my kids.  I try as hard as I can to pretend, but when you can't make it up the stairs with a basket of laundry, it's hard to hide.

I wonder if I'm ever going to feel good again? Am I ever going to feel like I have energy and excitement in my body? Like I could do a cartwheel if I wanted to? (not that I did a lot of cartwheels before)