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!

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.

Roller coasters

So I had my appointment with Esplin 2 weeks ago. There wasn't really much to talk about. He's still quite surprised that I'm doing as well as I am. No neuropathy or mouth sores, hand or feet sores.

They took my tumor markers and I got them back a few days later.  They both went up a lot.

So I went back into my hole for a bit. Cried, questioned and regrouped.  He had me come in a week later to check the markers again. I did and a few days later found out that at least one of them is down a few points again. (Other one isn't in yet)

I start wondering what is going on and am just sitting by waiting.  I have another chemo this week and then a week off.  Then I'll have my appointment and he will order scans.

Lord, do you love me?

I never know what to title my posts. So I think I'll wait until I'm done and see if there's something that sticks out.

Today is Sunday, I think.  Being quarantined makes it hard to remember what day it is as we do pretty much the same thing. We've been trying to add new things each week to make the Sabbath more special than the other days.

I've had some random thoughts, so this post will probably be all over the place.

I've just had my week off of chemo.  I don't feel more energetic or anything, I just don't have to go through 2 days of feeling like I have the flu. I really like it, but it makes going back all the more hard.

I go in Tuesday for my appointment with Esplin and then my chemo.  For some reason I feel a bit more anxious.  He'll take my tumor markers....which we won't know for a few days after my appointment, but then I'll know if it will be time to stop Taxol because it's not working or if I will continue with it because it's still holding things at bay.

I've really been tested with mental endurance.  I feel like I just can't keep going on this nasty poison, but the alternative means that it's not working, so then I want to stay on it.  I've been reading all these facebook posts in this new group that was created for the worldwide fast.  I've been reading everyone's miracles and  I so want one for me.  I dream of getting a scan and having my doctor call and say, Kristi! There's no sign of Cancer!  No sign at all!   However, that's not going to happen....and then just as I type that, I think see Kristi, you don't have enough faith....   Oh How I want a miracle, but I know I have this trial for some reason, and even though I don't know what that reason is, I don't think I've learned what I'm supposed to learn yet. I have A LOT to learn!

I've had the great opportunity to travel a lot during my life.  There's been a unique feeling that happens to me sometimes when I travel.  I won't be able to explain it well in words, but I'll try.  There have been times when I'm on a tour of ancient ruins or something and I kind of pull out of myself for a bit and see all of the people and feel the hugeness of the world and I feel very, very insignificant. I feel very alone in the middle of it and wonder how on earth my Father in Heaven can possibly be aware of ME.  I pull back in and reassure myself that indeed he is aware and I move on and forget about it...on purpose.  Maybe I was afraid at that moment to ask Him if he is, because 1-  It feels too huge and 2- maybe I was afraid of the answer.  I have felt that a few times during this pandemic.  With all that is going on with the world, reading about some people's miracles and other people's tragedies and thinking of all the people working tirelessly to help others, MY cancer feels very insignificant.  I start to think that my Father in Heaven can't possibly have time to help me, bless me, even be aware of me.  I think of the angels extra busy assisting people on earth who really need it RIGHT now.  Of angels welcoming new arrivals and teaching them and I'm just over here hanging out wondering if He still remembers I have cancer and I'm scared. If he remembers my girls are scared of losing their mother. If he remembers my husband is worried about losing me and how he will take care of the girls on his own.....If he remembers he doesn't feel good either.  If he remembers my child that struggles with depression and anxiety.
It's time for me to look back at my life and see the miracles I have experienced, to stop and count my blessings and all that proves HE does still remember that I'm over here scared of all of it.

I am reminded of Peter when the Lord asked him 3 times do you love me?  Do you think the Lord feels like Peter may have felt?  Lord, you know I love you. I've been with you, I've followed you, learned from you, helped you.  Kristi, You know I love you, remember all that I've done for you? Remember how I've blessed you and comforted you? Maybe he's feeling a little flabbergasted like Peter must have felt.......Lord how can you even ask me that? You know!  Kristi, how can you even ask me that?  You know!
I know that I don't understand His power.  I can't begin to comprehend how omniscience works.

“My beloved brothers and sisters, I testify of angels, both the heavenly and the mortal kind. In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face…On occasions, global or personal, we may feel we are distanced from God, shut out from heaven, lost, alone in dark and dreary places. Often enough that distress can be of our own making, but even then, the Father of us all is watching and assisting. And always there are those angels who come and go all around us, seen and unseen, known and unknown, mortal and immortal.” Elder Jeffrey R. Holland

And my heart is lifted, my faith is reaffirmed.

post note:  immediately upon finishing this post, the song from my mom's funeral came on the radio "She Put the Music in me"   There's my angel and there's my miracle.

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!

Panic and stability

My bone scan and CT scans were on Monday Sept. 30.
My anxiety shot so high up.  I was holding back tears, sometimes unsuccessfully, all day. While waiting for a shot of contrast stuff, I just about had a panic attack.  I don't know what was going on, just loads and loads of fear.
After my first scan of the day, we had about an hour break and were able to go get food since I had been fasting. When we got to the car, it all came pouring out. Poor Kevin.
I was so nervous and mad and distraught and sad. I just kept saying that "This is not the way my story is supposed to be!" "My life isn't supposed to go this way" " I hate everything about this...even the building we just came out of." 
Kevin just listened as I bawled and complained and shouted how unfair this all is and how I just wanted to wake up from this nightmare. 
I still feel like I'm living someone else's story.
After a second very long scan, we went home and I crashed. I was so physically and emotionally drained.
Well, the results were actually pretty good!
My Dr. appointment was this Wednesday and Dr. Esplin went over all the scans and says that right now I'm basically stable. Also, both tumor markers have come down!

This is great news!  However, I can't seem to feel very excited. Don't get me wrong, I'm so glad it wasn't the opposite, but I think I'm scared to hope and scared to be happy about it. 
One thing I've learned in the past 7 months is how smart Cancer can get and so so fast.  Anytime my drugs can just stop working cause the cancer has mutated and figured out how to survive.
I'm afraid to hope because I don't want to be caught off guard again. I don't want to be naive and think I'm doing so well only to learn that I'm not.

Maybe if I can have more and more scan results like that and get to a place of No Evidence of Disease, then I'll be able to emotionally celebrate a bit. But as all Metastatic patients know, it's never over until we take our last breath.
Dr. Esplin was also really happy about how I'm tolerating this Afinitor. He keeps expecting me to have peeling rashes on my hands and feet and mouth sores.  I haven't had any of those.
My current side effects are; itchy itchy dry skin....sometimes I scratch too much and I leave sores. Cotton mouth, nose sores. Constantly clearing my throat. Cold symptoms like runny nose and slight cough, sties in my eyes, fatigue, sometimes vomiting, also some not so fun stuff at the other end.
And I know there's more, I just can't think of them.......that's another one. MY brain drives me crazy. I can't multi task anymore, can't remember what I was just doing, etc. etc.
As time goes on, I could have more and more side effects, but for now I can tolerate these.

I've been having a lot of pain in my back. I have a lot of tumors up and down my spine and ribs. I can't seem to walk or be on my feet very long without it aching. I also can't carry heavy things or even small things for a period of time, or my back just aches.
I have a new pain in my left breast up high. He felt it, but couldn't feel anything there. Yesterday though, it became warm and red....so he called in some antibiotics for me.

I was reminiscing yesterday about how I was nervous to plant my garden this Spring. Well, I harvested "A LOT" and now we're expecting a hard freeze so it's all done.  I'm gad I planted and I'm glad I harvested and I hope I'll still be good for next year.

Mixed results

So I had my appointment with Dr. Esplin a week ago.  I got my 2 shots of Faslodex in my rear/lower back. Man that smarts!
Then he switched me from Zoladex( the shot for menopause) to Lupron. Lupron also is given in my rear, but now I only have to do that every 3 months.
I also got my month's supply of Affinitor.
On Wednesday, my tumor markers came in.  In breast cancer, they are looking at tumor markers CA27.9 and CA15.3.  Tumor markers aren't totally reliable, but so far they've done pretty well at letting us know what's going on in me. 
Ever since the beginning, my tumor markers have been going up and up and up.  This time the CA27.9 came down from 701.2 to 658! That's the first time something positive has come back!
However, the CA15.3 went from 492 to 537.9.  So the results are mixed. 
It is true, that when a tumor is dying, it breaks down into your blood stream and sometimes they can go up.  That's why he doesn't rely too much on them.

I am scheduled for a CT/ bone scan on Sept. 30th. I hope it gives us  a good look at what's going on and most especially, I hope it's positive information.

I also met a gal that lives nearby who was diagnosed 4 years ago. She invited 2 others that are 3 and 4 years into this. I asked questions and listened.  It was a weird feeling, just sitting with these strangers, yet there's so much understanding there.  I didn't want to be there cause I didn't want to be in this "club."  I don't know how long it will take me to accept my new life and what's to come because of it. I just know I'm not there  yet.

Little of this, little of that

I've kind of been MIA from this blog......mostly because I'm busy with my kids and that's where I want to spend my time, but also because nothing is really new.

I had my Dr. appt. last Wednesday. It went pretty well. My tumor markers are still going up which worries me, but also he says that can also go up when they are being killed because they're released into your blood stream. 

He has ordered a PET scan for me and my insurance has approved it. I'm just waiting for the Huntsman Cancer institute to call for my appointment. I'm nervous, but mostly glad that I get to know what's going on.

Dr. Esplin says that we can always hope for shrinkage, but at this early in the game, we should hope for at least "stable"  That means no growth and probably no shrinkage  I'm really hoping at least for that, cause I'm tolerating my drugs so well that I hate to change them and have new ones not agree with me as well.

The past couple of New testament classes at church have been difficult for me as we've talked about the atonement and our trials.

All along, I have prayed for miracles and added that I would like to be blessed to be content with what he has planned for me....to want what He wants for me.  Right now, I'm not okay with the thought of dying, but if it's His will, then I'd like to get to a point of truly being able to say Nevertheless, not my will, but thine.

Even the Savior asked 3 times if it were possible to not have to drink of the cup, but he did it willingly anyway.  And what he was about to endure was a billion billion times worse than anything I will have to endure. Still, I'm struggling truly being okay with it.....especially since I don't know yet what His plans for me really are.

Tumor markers

Last week at my Dr.'s appointment, he drew my blood as usual and they checked my tumor markers. A couple days later we called to find out what they were.

My markers went up and I felt defeated.

For those that don't understand. Tumor markers are different proteins found in the blood that tumors send out.  When they are up, it can indicate cancer. When they rise, it indicates that either there are more tumors or that the existing tumors are growing larger.

I felt so frustrated that my cancer is growing and why do I have to keep doing what I'm doing for another month if it's not working?

After talking with Dr. Esplin and some google searches and some reassurance from a group I belong to on facebook, I felt better.

Apparently, tumor markers don't work in everyone, so sometimes they're not very reliable.  Sometimes tumor markers rise at the early stages of treatment (for whatever reason)

Sometimes tumor markers rise for other reasons.

Dr Esplin told me not to panic just yet. Scans are the best indicators of what is really happening. He said it's too early to tell and to breathe.

Sigh, okay I'll wait.