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!

Expectations

 Last week I had scans again. Sometimes I am able to have scans and not be too anxious about it. This time was NOT one of those times. I had so much scanxiety! Probably because my PET scan last time showed growth of the tumors and I've been so off and on with my meds as I work up to a full dosage.

However, I hadn't realized that a great expectation of improvement had oozed into my brain.  After my previous appt. with Dr. Esplin, when my tumor marker had dropped so dramatically, I think I imagined those tumors just suffering and dying so very fast.  I wasn't even aware that I was expecting that.

So he had his nurse call me that afternoon. (If he calls, it's usually bad news, if nurses call, it's okay)  So she told me that there was a decrease in size of a few lymph nodes and my bones remained stable.

Good news right?  Apparently not, because I just began to cry. I was upset, I wanted more.  I think I had been expecting my miracle like I read about (Kristi there is NO sign of Cancer in your entire body and we can't explain it)  Then over the next few days, I was mad at myself for not being happy about good news.  

So I had my appt. with Esplin and he showed me my scans (I don't know how anyone can learn to read and understand those things) So there was one tumor in my mediastinal lymph nodes (Somewhere in my chest area between my lungs) that was no longer visible on the scans! Woohoo!  My liver lesions and some other lymph nodes were definitely smaller and my bones were just hanging out and stable.

This was a bit better than I thought. So I was glad. My tumor markers both also came down more than 100 points. So I went home and I didn't feel excited, I just felt kind of numb.

I realized that I was scared to celebrate. Scared of letting down my guard because I know so well how chemo just stops working and I have to switch to yet another drug and the number of treatments I have left are dwindling. 

So, I don't think I've mentioned this, but I have been talking with a social worker (therapist) at my oncologists building. Just over telehealth. He's been great.  I talked to him on the day after my appt. about how I was scared to be excited, scared to let go.  We've been talking a lot about the tug of war that I have in my mind about accepting the fact that I even have cancer.  I'm still tugging, I still haven't accepted it and that's okay. I'm getting closer as time goes on. He told me an analogy which in now way comes close to what I'm going through (his words) but I liked it.

He mentioned being on the best vacation I've ever been on and finding out that I get to stay an extra week.  How excited I'd be. Would I sit there and feel bad the whole week, thinking about that I was going to have to go home? No, I wouldn't want to waste my week that way, I'd enjoy and have fun.  

So, like me, I need to think of this month as an extra week to live. A vacation of sorts from the bad news. Even though, I know that at some point, the vacation will be over and the chemo will stop working, I don't want to waste this time worrying about it ending.

So, I think we all know that, deep down.  I know it, but I needed to be reminded that there's another way to look at it.  I'm trying.  It's easier said than done.  I haven't completely let go of the fear to celebrate, but I'm working on it.  I even sang in the car while driving the other day.  It's been a long time since I've done that.

Sit on the good for a bit

 A quick catch up of my status.  I had my August appt. and one of my tumor markers had come down 170 points!  That's never happened to me before. The other one was pretty much the same. So that was good news and I just want to sit on that for the month.

Since then I've been doing pretty good. I am all over the place as to my dosage of Xeloda.  I take a week off and by the end of that week, I feel pretty good. More energy, no nausea, etc.  Then I get it into my system a bit and it's all back. Esplin is fine with me doing different each day as long as I'm trying to work my way up to full dosage.

I also am very achy. Mostly my lower half. Waist to ankles.  Ladies in my facebook group say it's the Zometa or the Faslodex.  Kevin has been massaging my back, hips and legs every single night! What a great man I've got.

I have scans next week CT and bone. It's early because of my liver lesion growth last time.

I'll see Esplin the week after scans.

Roller coasters

So I had my appointment with Esplin 2 weeks ago. There wasn't really much to talk about. He's still quite surprised that I'm doing as well as I am. No neuropathy or mouth sores, hand or feet sores.

They took my tumor markers and I got them back a few days later.  They both went up a lot.

So I went back into my hole for a bit. Cried, questioned and regrouped.  He had me come in a week later to check the markers again. I did and a few days later found out that at least one of them is down a few points again. (Other one isn't in yet)

I start wondering what is going on and am just sitting by waiting.  I have another chemo this week and then a week off.  Then I'll have my appointment and he will order scans.

Scanxiety

CT scan and Bone scans on Monday.  Getting so nervous.  As much as I look forward to it because then I'll know more about what's going on in my body, it scares me to death. What will the outcomes be?  Will I have to change treatments again?