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!

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.