Pain

 Well, had my appointment with Esplin. markers still went down. Just a couple points each, but it's still in the right direction. However, my pain was getting worse and worse.  He ordered me an MRI of that area and sure enough....

A tumor has eroded through my bone in my sacrum and is encapsulating my sciatic nerve.  Not sure what encapsulating means in this situation, but man it hurts.  Pain killers don't even help anymore.

So I met with the radiation oncologist. Dr McAllister.  I had to go several times and do CT's and x-rays to get everything lined up while they  did "planning"  Placing images over images, marking sharpie marks and stickers all over my abdomen, etc. Then last Friday, I had my first radiation.

Now that machine is the biggest I've seen yet.  I call her Big Bertha.  I lay down, (pants around my knees) The techs line me up and I lay there listening to 80's music and within 5 minutes I'm done. Don't feel a thing.

So now I am exactly half way through. I will get a total of 10 treatments and I go everyday except the weekends.

I asked the dr. how fast I could start feeling relief and he said anywhere from the first zap to 3 months. Everybody is different.

I guess, in my mind, I like to imagine this laser beam coming down and this big explosion of my tumor.  That would be cool, but no,  it's a slow death and depending on the strength of the tumor and the kind, etc. it may be 3 months.  

I have been praying for relief sooner rather than later.  I'm so drugged up, in pain and so so tired.

I'm so thankful for my ward (church congregation)  that are bringing in meals and building garden boxes for me.  People are so incredibly good.

I feel bad sometimes, because I have offers to take my kids to school, etc.  but Kinli has been having a rough time....she is worried about me a lot, so I try to make things as normal as possible for her.

sigh   have I mentioned how stupid cancer is?

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!

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. 

Panic at the Disco

Valentines Day at 5:30 pm Esplin calls me and says your tumor markers have gone back up.

He tells me that the radio oncologist doesn't think we should do radiation but rather mastectomy. And he wants me to start the Red Devil.  That's the hardest chemo.

He panicked and so did I.

He let me take the next week off of chemo and do my scans on Friday.  So last Friday, Feb 21st I had both CT and bone scans.  I was super scared of what they would find. Scanxiety is real folks!

My appointment was on Tuesday.  My scans came back stable.  No progression.  No shrinkage either, but no progression. Even those dumb lymph nodes didn't grow. 

As a stage 4 patient, that is a victory.  I need to get more excited about those little victories.

He told me he panicked a bit and that's why he doesn't like to go by tumor markers alone.

So for now I'm continuing with 3 weeks of Taxol and then one week off.

I am the kind of person that needs a light at the end. A goal to reach.  I have to gear myself back up to continuing with chemo.  It's a serious mental effort on my part to be able to keep going.
I'm so tired of being tired and sick. I'm tired of being a burden to others.  My local church congregation has been feeding my family for 3 months and I feel like a burden.

I'm trying to teach myself how to be a sick person. To live with a terminal (we'll call it chronic) illness and still live.  I want to just do whatever I need to do even if I feel sick.

During the week off, Kevin and I talked about how I want to push for a mastectomy.  It just seems in my head that the breast is the one that's causing most of the alarms. As much as I don't want one, I just want it gone.  I told Dr. Esplin this, and he called my surgeon...remember Dr. Tittensor?  Anyway, they and the radio oncologist all feel the same.  Until I can get better control of my bones and liver a mastectomy would do more harm than good.  For one reason, the data shows it doesn't prolong life. Secondly, for the 4-6 weeks during preparation and recovery, I can't take any of my chemo meds and my bones and liver and lymph nodes can take off and get out of control.  So until we have better control over them and if my breast is still causing issues, then we'll revisit the mastectomy.

I'm glad that I'm at least stable. Now let's see shrinkage and my ultimate goal of No Evidence of Disease!