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.

Dr.'s appointment #3

Yesterday was my one month check with Dr. Esplin. I came with more questions and left with some answers and a boost of hopefulness.

So our blood is made in our bone marrow. The drugs I'm on as well as my cancer in my bones, affect my bone marrow, so I've been going weekly for blood draws to check my white blood cell counts.
They've been holding steady. I'm on my off week of ibrance chemo right now and he checked my counts as well as looked at my counts from last Friday......which was at the end of my 3 weeks on.  My counts are doing really well, which means my bone marrow is doing really well.
So I don't have to go for weekly blood draws anymore.....just at my monthly appointments.

I did get an infusion of Zometa which is a bone strengthener. I will do this once every 3 months. The reason for this is that as a tumor clings to a bone, it sends out stuff that eat away at the bone around it.  As the tumors shrink, I could be left with holes in my bones that will make it easy to fracture them.  The Zometa is supposed to help the bone heal faster and regrow itself. They use this same stuff for Osteoporosis. 
I went into the chemo room and just couldn't look at the people sitting in those chairs. Luckily they took me in the back to some different chairs and I sat for a half an hour with an i.v.  
I have been told that at some point, chemo will be used for me. I just can't look at those chairs yet. They scare me.

We finally got to see the images from my PET scan.  I have so many more spots than I even imagined.  I was trying to be generous and say maybe I have 20 spots, but there's more. Too many to count. And those are only the ones that the scan can pick up. It's everywhere.

This is one picture of me from the back. All the white spots are cancer.....the bright ones and the not so bright ones......except for my brain and for the big white spot at the bottom, that's my bladder.  He was rotating it while I snapped the photo, so it's kind of not very clear and it's only the back. It doesn't show the ones in the front or sides.

TDr. Esplin took another look and feel of my breast and lymph nodes. The good news is that it's looking and feeling so much better and he can only feel the one really huge lymph node and it's definitely smaller.  As he pressed on my spine and ribs where I have a gazillion lesions, there was no pain.  I still have pain in my legs and in my shoulder blade and in my chest.

He sounded quite optimistic that the drugs are working.  I was happy about that.

We asked him about my tumor markers.  The thing about tumor markers is that if they're reliable, they're helpful. If they're not, then they're not.  
Certain proteins from tumors get released into the blood and the blood tests check for this protein. As the number goes up, it means that there are more tumors OR that a tumor is getting bigger.  If the numbers go down, the tumors are shrinking or disappearing. However, tumors are very smart suckers and they mutate so the proteins change and that makes the tumor markers in the blood unreliable. The only true way to know if cancer is progressing or regressing is scans.

Dr. Esplin wants me to be on 3 full rounds of ibrance before they do another scan. So I thought I was going to get one mid June, but he wants to wait until late June or early July. sigh

As tumors shrink and I'm left with just a couple, I will probably get radiation on those and probably regular chemo at some point.

I asked for more clarification about why no surgery and why no hysterectomy. Pretty much got the same explanation.....neither one will help much now that I'm stage 4 and doing those will cause me more trouble and not really help.  I also learned that ibrance is better than i/v/ chemo. If this was me 5  years ago, I would be on regular i.v. chemo, no doubt.  ibrance is only about 5 years out from being FDA approved. Studies are currently being done are other stage cancers to see if ibrance will help them.  I guess when they test a drug, they go backwards from stage 4.
He said that after the testing, which takes 5 + years, if ibrance and others, show to work on other stages, then regular chemo could become a thing of the past.  This would be really great news for everyone. ibrance and these targeted chemo's are so much easier on people. Not everyone tolerates them as well as I am, but there's still so much less side effects than the other chemo.