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!

 

It's been awhile

 I haven't felt like writing about cancer. I haven't felt like thinking about it.

I've had several of you that read this ask about updates, so I figure it's time.

I've had two doctor's appointments since I last wrote. The most recent being yesterday.

Still good news. My tumor markers are still going down.  I was surprised a bit as nothing to date has worked this well for this long.  I have scans coming up on Dec. 4, then we'll be able to see how I'm really doing.

So I've been on this chemo pill, Xeloda, since July when I had my extreme headaches.  I had to work up to a full dose because it made me super nauseous.  So I've been on a full dose for quite awhile and the side effects are hitting me pretty hard.

Not to complain, but I want to list everything, just for my memory and documentation

Yucky taste in my mouth

Hardly any flavor of foods.  Potatoes and white bread seem to be the best.

Nausea which is mostly dinner time, but off and on during the day. I have to time pills and food just right.

Hand and foot disease.  I haven't got to the point where the sores hurt and peel, but my hands are more than chapped. They're dry and red and hot.  I also have rashes on them and it goes up my forearms. My feet aren't as bad, they're extremely dry and the balls of my feet, at the top, get sensitive when I walk.  They suggest no barefeet.

Digestion issues: Sometimes extreme, sometimes mild, never just normal

Extreme fatigue...I get soo soo tired and weak.  I usually do too much during the day and by 4:00 I'm done.

Overall yuck- I just don't feel good most days.

Esplin told me that we should slowly back down...maybe instead of 3 in the morning and 3 in the evening, I should do that for the first several days and then switch to 2 and 3 and then maybe 2 and 2. So I'll try that, but I'm scared to not take the full dose.  He assures me that this is normal and it's fine. The goal is to get the longevity on this Chemo. If I have these severe side effects, I won't be able to have a good quality of life for long.

I'm happy that my tumor markers are still coming down.  I'm trying not to get too high of expectations, but remain positive at the same time. Balance

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.

Learning the lessons

 I said at the beginning of this trial that I didn't want to miss the lessons this disease would teach me.

I'm sometimes looking and trying to figure out what I'm learning or have learned. Mostly, I still see a lot of things I need to learn.

This morning I was listening to the "All In" podcast. I don't usually listen to it, but I saw that it was about grief and I wanted to listen. S. Michael Wilcox was the guest and I loved what he had to say.  He lost his wife to Brain Cancer 10 years ago and he wrote a couple of books about. it.

A couple of things stood out to me. Hopefully, I can articulate well.

I was thinking, last week, about how when I think of my mom, I think of how much I miss her, how much I love her and I don't think of the negative things. Either negative things with our relationship, or things about her that made me mad, etc.

Brother Wilcox talked about how when someone dies, you go through their things and cleanse out the stuff, keeping things that are special to you.  When we lose someone, we tend to do the same thing. In our relationships, we tend to notice the mote in people's eyes. In Matt 7:3 The Savior basically asks, why are you even looking at the mote? We answer, because it's there, I can see it. and he asks why are you looking at it in the first place?

I think that's what happens with the loss of people we love.  We tend to forget the bad and think of the good and that's a good thing. Our ability to love is increased because we're not focusing on the bad.  I really liked that thought and I also like the idea of grieving our past lives.  I often grieve the old me. My old normal and I think that helps me realize how good my life was and I have a better appreciation of it. It also made me think of Kevin after I'm gone.  He never outwardly criticizes me, but he's human, he must have several complaints about me. Hopefully, when I'm gone, he'll remember the good only and his love for me will grow even more. "Grief is love's shadow. If we didn't love, we wouldn't grieve."

In talking about grief, any kind. There's no roadmap on how long it's supposed to take to be done grieving.  I think of grieving my mom, of grieving my BC life. BC= Before Cancer.  The one thing to remember is our God is a God of Happy Endings.

Another thing he pointed out was how the Savior said "Do I have to go through this? (remove this cup)   and then he said "this is my purpose"  This is what I came to do.

When I'm questioning why I have to go through this, I have to remember that this is my purpose. This is the way I'm going to learn what my Father in Heaven wants me to learn. This is why I came.. Endurance is what God asks of us but it doesn't have to be a bad thing to endure or to wait for the blessings or the answers.

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.

Balancing act

Today is the last day of July!  I can hardly believe it.

I was going absolutely stir crazy, so we packed up the kids,, got the last VRBO available and went to Lava Hot Springs for 3 nights.  Lava has a lot of good memories for me. Family reunions, swimming, floating the river and the hot pots of course.  We did all of it and the girls loved it!

Last Thursday night, I was nauseated....like I usually am on this Xeloda, and I threw up and it happened again! The head pain!  Although, it was less severe, kind of like the first time it happened to me.So I was in bed and by the next morning it was much better with just a little residual left over.

Of course, it was Pioneer Day and Esplin wasn't in the office.  I wasn't sure if it happening again, after it hasn't happened means that it's not the Piqray, but instead the Xeloda.  However, I've heaved since then and haven't had the head trauma so I just don't know.

Esplin wanted me to very gradually re-start my Xeloda. My full dose is suppoesed to be 3 in the morning and 3 at night.  That last time I had the head thing I had just had my first day of 2 and 2. So I've dropped down to 1 in the morning and 2 at night.  I'm trying to find the right balance between how and what to eat how many minutes before I take my chemo and also how to time my anti-nausea pill.  I am doing okay with it, but just when I think I have it figured out I will get so nauseous and just can't hold it in.

I will go get my labs next week and then see Esplin the following Tuesday. That way we'll have my tumor markers and know what we should do from here on out.  Half a dose of chemo doesn't seem good enough to me, but I just can't seem to tolerate more.

The Relief Society President asked if she could have the sisters in my ward fast for me this Sunday.  I realized just how far I've come with accepting help.  I welcomed that offer immediately.

I just can't do this alone. I need those prayers. I need those fasts.  I need those people. And I'm so very thankful for them. I don't think you really can understand until you've had people fasting and praying for you, how much it really does help and lift me.  There have been some times that I have been so down and scared and discouraged and I knew that the only thing keeping me going was the faith and prayers of others.

What a fabulous blessing prayer and people have always been in my life.  Isn't that a wonderful part of the plan?