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!

Onto treatment number 2

There's so much that has happened in the past month that there's no way I could possibly write it all down.
The beginning of August, Kevin and I went on an anniversary trip to the Dominican Republic. We have always planned on doing a 20th anniversary trip, but with this being our 15th and not knowing what will be in 5 years, we are trying to have an attitude of "just do it now."  The DR was the cheapest place for a last minute trip.
It was so nice to be with just Kevin for 6 days and we did a lot of resting and a little recreating.
Our trip was dampened by the death of our cute pup, Misty. She was hit by a car on our actual anniversary and died soon after. This made it hard to be away from home and we ended up calling more often than we would have. That made it kind of hard for me to really let go and relax, but it was still a great trip and time together.
I started to feel a little picked on with all that has happened this year. My family needs a break so badly and even when we purposely take one, we're not really given a break.  I don't want to say that we can't handle anymore, because I'm scared of what else may happen to prove me wrong. With my mom's death, my cancer, Misty's death and many other things, this year has been awful and my little family just needs to be able to rest.

Two weeks ago, I had an appointment. Dr Esplin told me that he would wait to get my blood work back to see what my tumor markers were. If they were steady or even just a bit higher, we would stay the course, but if they were higher, we would have to change.

Well, they were higher.....sky higher. This means there's progression of my tumors and my treatments have failed.

My new treatment plan is a new chemo called Afinitor (everlimus) which is a pill I take everyday without breaks.
Once a month I get shots called Faslodex (2 shots in the tush) which is a kind of chemo that is basically an estrogen blocker.
I also get Zoladex shots once a month which puts me and keeps me in menopause.
Every 3 months I get Zometa, which is a bone strengthener.

I was handling Ibrance so well, and I've been on Afinitor for one week and it's been awful.
I have swirly head, extreme fatigue, heartburn, constipation and diarrhea.  I get hungry, but no much tastes good. Hot flashes....oh the hot flashes. So far I haven't had the mouth ulcers that come with it. It can also cause weight gain or weight loss. I told Dr. Esplin that I would like to lose weight and he said he didn't want me to lose it with this cause it can go too far. To be honest, I figure I'll face that if and when it happens.  I've got the one shots trying to make me gain weight so maybe they'll balance each other out?

It's been rough emotionally and I've gone through all the familiar fears of hopelessness that nothing is going to work for me.  Scared that if something does work for me the side effects are going to make me so miserable. I'm scared for my kids, Kevin and myself.  I received another priesthood blessing, and that was comforting. I wish I could do better at keeping that peace with me.