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?

I thought I was dying

It's been so long since I've written, and so much has happened with my cancer.

Well, it turns out that the Taxol did stop working like we thought so I stopped that and had another PET scan in July 2nd. the PET scan showed that my liver lesion has grown quite a bit, as well as some lymph nodes, as well as some new lymph nodes. My bones seemed stable.

I had prayed really hard before the scan that I could just be okay with the results and not get too down.  That really helped, because I didn't feel too discouraged. So Dr. Esplin prescrbed Xeloda to take along with the Piqray I'd been on for a few months.

I started those on a Friday night. The dosage is 3 pills in the morning and 3 at night.
Sunday morning , my birthday, I experienced some severe nausea. When I went to throw up, the pressure in my head was so painful.  That night or the next, (all a blur) I took my pills and I threw them up right away and my head felt unlike anything I had ever experienced before. I started screaming in pain and was on the floor. The next morning was set for a brain MRI cause Esplin thought I could have tumors in my brain. As I was getting ready, I just coughed and my head split again.  There's really no way to describe it. Something like upon breathing after coughing or vomitting, whatever blood flow was cut off and then as it spread to my head again it was like swords all over my head just stabbing me. We hurried and got in the car and I'll be honest, I literally thought I was dying. I was telling Kevin every last thing I could think of because I was sure I wasn't going to make it.  They gave me a Valium which helped a bit just because it made my muscles relax a bit.

Esplin called me a few hours later and said the scan was clear. He didn't know what could be the cause as he's never seen this with my medications. When the severe symptoms subsided a bit, I felt a bit better, but my head still ached so badly with every heart beat.

In the meantime I stopped taking my new chemo pill Xeloda. Wednesday was okay as I didn't feel nauseous but then Thursday evening  it happened all again. If it was possible that this could be worse, it was. Kevin called 911 and it took forever for the ambulance to arrive.
I made Kevin send the girls to our good friends, the Smith's, because I didn't want to scare the girls with an ambulance coming, etc.  The EMT's arrived and my vitals were all good, except my blood pressure was high cause I was screaming.  They explained some thing about taking me in the ambulance and Covid....(I don't have any idea what they meant,) but Kevin took me to the ER.

They immediately gave me morphine, didn't help, more and more and more and finally it started helping a bit (I forgot to mention that the pain killers I had at home weren't even touching the pain)
So I had a CT scan, may blood tests and even a spinal tap. All of them came back clear.  I couldn't go home because my oxygen levels were too low because of the morphine.  Finally the ER doc gave me a cranial nerve block. It was awesome, they sent us home which was 6:00 in the morning at that point and we slept. By 11 the block had worn off and the pain was back.  So I was in bed for the weekend with pain killers, etc. 
Monday, I was able to talk to Esplin again and he ha done some research and found a few cases of people on Piqray that had similar symptoms, even after a couuple of months on it.  So at this point he took me off of everything.  I waited and by Thursday, I was able to get up. and although I still have a headache everyday, it's so much better and I can actually do stuff.

In the meantime, he also scheduled an appt. with the radio- oncoloagist this coming Tuesday, about radiating my C7 in my neck because I have a lesion there and we though it may be encroaching on a nerve or something.

So by Friday, he wanted me to start back on Xeloda but start one pill and then gradually get up to a full dose.  So we'll see how it goes. 

Faith is hard

Where to begin?
My tumor markers have been consistently going back up. So Esplin started me on a new chemo pill called Piqray in addition to my weekly infusions.

That same week, I had scans. May 13th. Esplin called me back the same night to tell me that everything was still stable!  I was really surprised!

Had my appointment with him on the 19th.   He explained that the fact the markers were going up meant that even though the scans show I'm stable, the cells are more active. He also mentioned that the cells in the bones go into these pockets in the bones and you can't really see them on scansSo I got my infusion along with my monthly Faslodex shots and my 3 month Lupron shot.  It hit me a lot earlier than usual and I was down for the count.  The next day I'm used to being sick, but this time was worse.  The digestive stuff was more frequent and I ended up with a fever Wednesday night.  It was back down by the morning. Thursday I'm usually ready to get going again, but this time I was still feeling sick.  Digestive issues, headaches, pains all over my body and nauseous. Not to mention that my taste has been worsening the past few weeks.  I couldn't even eat ice cream it was so gross.

By Friday I was pretty much back to my normal, but I'm definitely feeling the effects of two chemos vs. one.  Oh also, my hair has started to fall out again.

I'm frustrated and I am having a hard time thinking I have to stay on Taxol when it doesn't really seem to be helping much anymore.... Yet, if I go off of it, what will I do?

I'm frustrated that I'm over a  year into this and I'm no better than I was. Nothing seems to be working very well and we're checking off the treatments way too fast.

I'm working constantly on Faith in the Savior. Faith that everything will be okay no matter what.  It's hard to let go.  True Faith is hard. So very hard.  Being okay with whatever occurs, knowing it's better than my plan, letting go of control of something that I don't have control of in the first place.  I'm trying to practice it and some days or moments, I do better than others.

“Fighting through darkness and despair and pleading for the light is what opened this dispensation. It is what keeps it going, and it is what will keep you going.”
―Elder Jeffrey R. Holland, Created for Greater Things

“If for a while the harder you try, the harder it gets, take heart. So it has been with the best people who ever lived.”
―Elder Jeffrey R. Holland, "The Inconvenient Messiah"