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!

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"

Week ?

I've been wanting to write, but my kids have taken over all the computers and electronics in the house!

We've been quarantined now for 3 weeks and we're all going a bit crazy.

This week is Spring Break for school, so now I'm having to entertain them for even longer in the day.  I think they should just keep doing school and get it over with a week early instead of Spring Break.

Since I last wrote, I have had 2 chemo infusions and 1 doctor's appt.

Kevin hasn't been able to come with me. So he listened on the phone to Esplin.  Nothing very eventful at that visit.  He took my tumor markers and one went up again and one went down. So we wait another month.

Chemo is  Chemo.... the chairs are spread far apart and they took everyone that gets infusions for other things like MS or Chron's disease and put them in another room entirely and left it just for us cancer patients.  They do screening when you first walk in the building and at reception, but that's about it.  I guess I need to get a mask now.

It's been a crazy time and the focus has been so much on this virus and I wonder if anyone in my family will get it and then I wonder if I will get it, and then I wonder if I would survive it, and then I wonder if I'll survive my cancer and it's one eternal round.

It's been interesting to see how people react to this virus. Some just act like it's no big deal and some are so anxious it's crazy. It's a lot like cancer patients. Some people are at a place of "I've been doing this for 10 years and it's no big deal" and there's people that are brand new getting this diagnosis and their world is crumbling all around them. Then there's people like me.  I'm not quite as shocked as I was a year ago, but I'm still wondering if any of these treatments are going to work for me.  As far as my mets go, I'm in no better condition than I was a year ago. I'm not any worse at the moment either....except for losing my hair, my eyebrows, my eye lashes and having more pain when I try to do anything physical.

 I still struggle with thoughts of being ready to write letters to my girls for special occasions and not giving in to those thoughts because it makes me feel too sad.

I don't know what the Lord has in store for me, but this weekend was General Conference for my church and it was fabulous. Full of hope in the Savior, learning to "Hear Him."  Celebrating the 200th anniversary of The Savior and the Father appearing to the prophet Joseph Smith and hearing so many wonderful talks and testimonies.  I know it's all true and I'm thankful for that knowledge. It makes this disease and the fear of leaving my family that much easier. 

Tomorrow I have chemo and then a week off.

Faith

I've been thinking a lot about Faith the past year. And I don't really have any answers to my questions or thoughts, but here's what I've been thinking about.

Faith in Jesus Christ is harder for me than I thought it was.  I've always been more on the anxious side, and I do lots of what iffing.  Somehow I've always felt that if I worry about it, then I won't be taken by surprise too much. I'll be prepared for whatever occurs and then I'll be able to handle it better. Make sense? Now I'm not neurotic or anything, and it's not a conscious thing, but I just tend to be a worrier. I jump ahead, I think of things that may or may not happen and I worry about it. Now does worrying change the outcome?  No, but somehow it serves a purpose for me. It protects me.  I was a bit of a worrier when I was young, but it really hit me after the birth of my first baby. Post Partum anxiety.  I wasn't depressed, I was stressed and overwhelmed and worried so much about this fragile little thing. Then it went into other areas of my life.  I know all the quotes and meme's about worrying taking away today's joy, blah blah blah. And I really started to see it more when I have to help one of my children who suffers from anxiety.  I have to coach her along the way sometimes and I feel a bit like I'm the pot and the kettle.  I never really thought that I wasn't having Faith by worrying.

When my mom died, all I wanted to do was to feel her, see her and have her tell me she was okay.  I wanted comfort from HER. I was very aware that the source of comfort should be from my Savior, but I just felt like if I could feel her, I would be okay.  I knew I was hoping for the wrong thing....not necessarily wrong, but the lesser right.

When I got my diagnosis and ever since, I have been searching for peace and I know that I need to receive it from the Lord.  I pray for it, I receive blessings for it, I fast for it, yet I've noticed that I tend to have Faith that the Savior will........something....   He will help my meds to work. He will make the tumors shrink. He will make the side effects of the drugs less annoying. Faith that he will do this or that.

Faith in the Savior means just that though.  Faith in the Savior.  Faith that everything will be okay. Faith that I will be taken care of, no matter what the outcome. Faith that my family will be okay even if it's without me.  This kind of Faith is harder for me.  It's hard to give it all to him. 

I read a story recently about putting our baskets in the water, like Jochebed, the birth mother of Moses.  I think the article was more about us sending our children out into the world and knowing that the Lord would watch over them, but I also saw the analogy for my life with the trial of Cancer.  I have to put my basket in the water, not knowing what's going to happen, but knowing it will be okay because I trust in the Lord.  I have to, in the words of Elsa "let it go." . I have to turn it over to him.  That's the hard part.

In reality, it should be so much easier to turn it over to him than to hold onto it. What a release that would be. To truly never worry because I know the Lord is at the helm.

Writing this all down makes me think....of course.....that's what you've tried to do your whole life, but I think I haven't.  Just like a visit from my mother wouldn't calm me as much as the Savior would, I still hold onto what I want. What I want to pray for. What I want to wish for. The way I want my story to turn out.

It's already been proven to me time and time again that life doesn't go according to MY plan and even when I've struggled and fought through trials, it has always turned out better than my plan anyway.
So I'm committing now to try to put my basket in the water. Maybe it will be one twig at a time, but eventually, I will be able to put it in the water and let it go....trusting that the Lord will take care of everyone and every outcome will be the best. And look what he did with Moses, he was more than okay. He was more than taken care of. He was incomprehensibly wonderful. And so will we be.