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?

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.

World Chaos

Sometimes I have all these things in my head and want to write them down and then I get distracted and forget what I was going to write. So then I don't write and now it's been forever/

Right now I'm on my week off of Taxol. I'm scheduled to see Esplin next Tuesday and do another infusion.

I'm scheduled, but right now our country is in chaos. We're all self isolating and social distancing because of the Coronavirus.  I am in the "at risk" category because of stupid cancer. In addition to not having school or church, we are also not doing friends. 
I'm not too scared that I'm going to get it. I hope I don't and I don't know what my body would do if I did, but I am concerned that I won't be able to get my chemo treatment.  They're really cracking down and closing up places. I got a message this morning from Revere Health that some appointments could be cancelled. We also had an earthquake this morning. Sheesh

The other day I had a weird experience. I think it was Thursday or Friday and we were getting all this information about school's closing and so much stuff about the virus and I was so full of that, that I forgot about Cancer.  For the first time in a long time, I forgot about Cancer.  The reason I know I forgot is that I then remembered.

Remembering is like when you wake up and think it was a bad dream and then realize that it's not.  It's real.  And it hurts so bad.  It's a rush of emotions all at once and it's hard.
I was on facebook and I saw a post from a gal that I've never met, was planning on meeting soon, and is a year ahead of me in this journey and lives right here in my city.  She started on taxol in February and the Taxol actually stimulated the growth of her liver tumors and she is now in liver failure and have been given about 3-5 weeks to live.

She has the exact same mets as me. Bones and liver.  She is a member of my church and believes as I do about life after death. She never married and is around 42 years old.

It hit me like a boulder. I got scared and I cried and went to that dark place.  I crawled out fast, because I dd not want to stay there.  It scared me. and I've been trying to detach from it.

Now I am facilitating school to 4 kids and trying to figure out what is going on in the world.  A little secret I have is that I have kind of wanted the end of the world or the Second Coming to happen....I've been hoping that it will come sooner than later so that I won't have to die and leave my family. So my girls and Kevin won't have to worry about losing me.  I'm sure this is all a sign of the times, but theres's still so much that needs to happen for the end is here.

I sound like a real downer today.......maybe cause it's rainy and we've been locked inside. 
I'm doing okay and I'm hopeful and anxious to find out what my body is doing with this cancer. I hope that it's kicking it's butt.  I hope and pray that my tumors are getting weaker and dumber and won't be able to hold on any longer and just dissolve away.  I'm hoping and that's good.

The Vainness of Cancer

yes I googled it, Vainness is a word.

I think at some or many points in our lives we all feel insecure about our looks.  As we grow older, I think most of us realize that our self-worth isn't based on how we look, but more about who we are.

However, I think we still care about our looks. That's why we buy cute clothes, get our hair done, wear makeup, etc.

Cancer has taken that all away from me.
I've struggled with my looks lately. My  hair is nearly gone. My eyes look sick, my skin looks sick. and I'm gaining weight.

Weight has been an issue my whole life. Everytime I seem to get a hold of it, some major life situation comes up that derails my efforts.

I'm on a steroid before my chemo that makes you gain weight. I'm now in medical menopause which makes you gain weight. I'm on another anti-estrogen pill that makes you gain weight.

In the middle of feeling so crappy physically, I'm feeling insecure.

When I first got diagnosed with Cancer, I had a brief thought that I'd lose weight and that would be my silver lining. After all, in all the movies, cancer patients are always skinny and gaunt.

Turns out, most women in my "groups" have gained weight.
It's just not in my cards. Sigh

Focus on the posistive

When I was first diagnosed, almost a year ago, I was reminded of a gal in my old ward/neighborhood, that had MBC. I knew her a little bit, and thought the world of her, but didn't know her really well.
However, in my need for answers, hope and needing some reassurance, I called her, or maybe she called me. She was so good at listening and helped me realize that it's possible to live WITH cancer.

Well, the year has gone on and things have changed with my cancer multiple times. My hopes and fears have been all over the place.

After my last scans, I was back in an emotional hole. Feeling lack of hope, fear of my future or lack thereof, mad at my body and frustrated with my stupid cancer that is more aggressive and complicated than I want/thought it would be.
So on Monday, my friend texted and came over for a visit.  She brought treats and gifts etc. but most importantly, she brought hope. I don't think she even knows how much she helped me.

She has had MBC for 11 years! and most incredibly, she never had clear scans until last year!  So she has been living and working and doing WITH cancer. It wasn't until just a year ago that she got her first clear scan!
She has had several surgeries over the years to remove tumors and at the beginning she had a double mastectomy and hysterectomy.
I know she told me this a year ago, but I hear so many stories of people's journeys and my brain is in such a fog that I forget who goes with which story.

Anyway, I guess in the whole dream I have of getting to the point of no evidence of disease, I get too focused on it. Her visit  helped me realize that even if I don't get to a point of NED, I can still LIVE. I can still survive.
I started thinking about how my liver tumor IS shrinking, my bone lesions aren't going to kill me.....as long as they stay in the bones.  even the cancer in my breast isn't going to kill me......at least not now. It's the cancer that spreads to my organs, etc. that I need to be most worried about, and right now it's okay.  There are treatments for my lesions that aren't responding to chemo and I can be hopeful.
So I am. I'm focusing on the positive. Feeling more brave to fight and that is good for today.

Chemo update

So I've had 2 infusions of Taxol now.
The first time I went, they gave me an infusion of Benadryl and a steroid before the Taxol.
The Benadryl made me so jittery. I couldn't stop moving. I was up and down and all over the place! It must be what an addict feels like when they need their fix or something.  It was so awful. It lasted about an hour and then I crashed.  Slept until the nurse woke me up telling me I was done. She made a note to give me Claritin from now on instead of Benadryl.

Because of Thanksgiving break, they were closed on the next Friday and I had an appt. with Esplin on the next Monday anyway, so my treatments will now be on Mondays.

So far, I come home and within an hour it hits.  I don't even know how to describe what I feel,  I just feel crappy.  Head hurts, body achey.  I feel beat up and well,.....like I've been poisoned. Which I have.

The next day is about the same.  By Wednesday I think I'm feeling better so I get up and do stuff and then I realize that I've pushed myself too hard. (showering and getting ready for the day)

Thursday feels a bit better, but I just feel blah.
I hope I have a few good days Sat and Sunday before I go back on Monday.

I went wig shopping yesterday. I dragged my friend Lynsey with me. She's a great friend and happens to also do my hair.  I was freaking out and just needed someone with me. 
It wasn't so bad after a bit, but at first I was really freaked out.  I put on some scarfs and stuff and just looked like Cancer.  I found a wig that actually looked a lot like me. Then I found what they call Halos.  You wear them under a hat and the hair sticks out so it looks like you're just wearing a hat and not bald.
I'm still holding out hope that I will keep my hair OR that maybe it will just thin. Nothing has happened yet, but it's still early,

Emotionally, I haven't been doing too well. I'm sure feeling sick has a lot to do with it.  I've been very hopeless, weepy and irritable.  I keep feeling like this is it and I'm never going to feel "good" again. I feel like it's not going to work.
I've also been having tons of back pain and can't stand or walk for very long.  I'm scared it's going to break any second.  I've heard of women just rolling over in bed and they break their back or neck or whatever.  It feels like that to me. my lower back really really hurts and it's scary.

My kids have all been having a rough time.  The younger two are crying and stressed a lot. Also needy.  Haeli always seems to handle things well, but I'm afraid that she'll keep it in too much.  Maili has struggled a lot.  They all say that it is easier to forget I have cancer when I don't look or act sick.
I'm laying around a lot and with most likely losing my hair, it will be tough on them.
I told Kinli she could draw a face on the back of my head and she didn't like that at all. I thought it was funny.

Being the Holidays has made missing my mom all the more difficult and on the 23rd it will have been a year since she died.  I don't even know where this year has gone.  I've been in a fog all year and don't remember much of what has happened except for Cancer.

I'm not handling this very bravely like I would like.  I'm a mess and it's been hard. 
For anyone that reads this,  I really need your prayers.

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.

Scanxiety

CT scan and Bone scans on Monday.  Getting so nervous.  As much as I look forward to it because then I'll know more about what's going on in my body, it scares me to death. What will the outcomes be?  Will I have to change treatments again?

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.

Chemo brain

I read this article and thought, Oh my gosh, I have every single one of these! Chemo brain is real. Although, I also think it's this combined with a little PTSD from my diagnosis and also depression. I noticed some of them after my mom died. 

I get frustrated because I feel like I used to be a pretty "on top" of it person, and now, I just can't seem to think right.  I have left the hose on in my garden for 2 days, I always forget what I was about to do. I can't concentrate on anything, I always lose my train of thought mid sentence...... etc.  I feel like I've let others down when I forget to call them back or return a text.  I hope people forgive me.  Here's the list from an article

Chemo Brain Is Real And Here Are 10 Symptoms Associated With It

BY ANGELA BANKER

1. Feeling Slow – Many people with chemo brain report feeling slow in their thinking and mental processing. Figuring out a problem that has arose may take much longer than it normally would.
2. Forgetting Things I Already Know – Self explanatory
3. Lack Of Concentration – While sitting in a meeting, you noticed you cannot recall the last five minutes. What were we discussing again?  Where did your mind go during the meeting? You can’t remember!
4. Losing Your Train Of Thought – You are having a great conversation with your best friend when all of a sudden you forgot what you were talking about. It doesn’t happen just once, but multiple . . . Wait! What was I saying again?
5. Forgetting The Simple Things – Those small, everyday things can be the hardest to remember at times. You may rush out the door and get to your car before you question yourself, “Did I lock the front door?” You may get all the way to work before you call and question your husband, “Did I turn off the iron?” You could return home to notice you failed to turn off the television when you left earlier.
6. Trouble Multi-tasking – Multi-tasking is an art form. When you add chemo brain into the mix, it becomes more difficult. Trying to do two or three things at once during this time is challenging. 
7. Difficulty Learning New Things – Focus and concentration are qualities that go into learning. Chemo brain often affects each of those making learning that new skill even harder to do. 
8. Forgetting What You Were Going To Do – You stopped cleaning the kitchen in mid-clean to grab something in the living room. As soon as you walk in there, you ask yourself the 4 W’s. Why did I come in here? What was I going to do? Where was I really going? When did I forget?
9. Difficulty Speaking – That moment when you can’t remember what your favorite box of cereal is called – “That box, over there, in that thing. It’s red. It’s this tall. It’s . . . “ – can be embarrassing. Often times you know what you are talking about, but you just can’t seem to get the right words out.
10. Mental Fatigue – Add this to the lack of focus and the inability to concentrate. Your mind is just tired. Your brain feels overworked early in the afternoon leading to more confusion when you’re trying to follow a conversation.You could use a mental nap and find zoning out is becoming a frequent habit.                                                                                              You may find yourself reading this list saying, “I’ve had that and I’ve never taken chemotherapy.” It’s true! We have all experienced these. Imagine experiencing it ten times more frequently, or on a daily basis. Chemo brain takes those cognitive issues we have and intensifies them. Be patient with a person who is experiencing these symptoms. Often times they become frustrated themselves and would appreciate the support.

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.

Onto treatment number 2

There's so much that has happened in the past month that there's no way I could possibly write it all down.
The beginning of August, Kevin and I went on an anniversary trip to the Dominican Republic. We have always planned on doing a 20th anniversary trip, but with this being our 15th and not knowing what will be in 5 years, we are trying to have an attitude of "just do it now."  The DR was the cheapest place for a last minute trip.
It was so nice to be with just Kevin for 6 days and we did a lot of resting and a little recreating.
Our trip was dampened by the death of our cute pup, Misty. She was hit by a car on our actual anniversary and died soon after. This made it hard to be away from home and we ended up calling more often than we would have. That made it kind of hard for me to really let go and relax, but it was still a great trip and time together.
I started to feel a little picked on with all that has happened this year. My family needs a break so badly and even when we purposely take one, we're not really given a break.  I don't want to say that we can't handle anymore, because I'm scared of what else may happen to prove me wrong. With my mom's death, my cancer, Misty's death and many other things, this year has been awful and my little family just needs to be able to rest.

Two weeks ago, I had an appointment. Dr Esplin told me that he would wait to get my blood work back to see what my tumor markers were. If they were steady or even just a bit higher, we would stay the course, but if they were higher, we would have to change.

Well, they were higher.....sky higher. This means there's progression of my tumors and my treatments have failed.

My new treatment plan is a new chemo called Afinitor (everlimus) which is a pill I take everyday without breaks.
Once a month I get shots called Faslodex (2 shots in the tush) which is a kind of chemo that is basically an estrogen blocker.
I also get Zoladex shots once a month which puts me and keeps me in menopause.
Every 3 months I get Zometa, which is a bone strengthener.

I was handling Ibrance so well, and I've been on Afinitor for one week and it's been awful.
I have swirly head, extreme fatigue, heartburn, constipation and diarrhea.  I get hungry, but no much tastes good. Hot flashes....oh the hot flashes. So far I haven't had the mouth ulcers that come with it. It can also cause weight gain or weight loss. I told Dr. Esplin that I would like to lose weight and he said he didn't want me to lose it with this cause it can go too far. To be honest, I figure I'll face that if and when it happens.  I've got the one shots trying to make me gain weight so maybe they'll balance each other out?

It's been rough emotionally and I've gone through all the familiar fears of hopelessness that nothing is going to work for me.  Scared that if something does work for me the side effects are going to make me so miserable. I'm scared for my kids, Kevin and myself.  I received another priesthood blessing, and that was comforting. I wish I could do better at keeping that peace with me.

no words

I haven't written much. Been feeling too much with no words.
My mental health is not in a good place these days. I'm still keeping my head above water, but I feel so so sad and so so scared. I don't seem to be all there with anything we do. Any activity with Kevin and the girls and I feel like there's a part of me somewhere else. I don't seem to be able to enjoy things to the fullest and I hate it.

My scan results weren't all that bad, I mean there was some positive spots, but I think even though I won't admit it, I was hoping for a miracle. I told everyone I was just hoping for at least "stable" and I think I would have been okay with that, but secretly, I was hoping my Doctor would call and say "Oh my gosh! I've never seen such quick improvement"

I went in for my appt. last week. He showed me my scans which looked pretty much like the first ones. My liver tumor isn't quite as active, but I do have some new ones under my arms and in my bones.

I got my first shot of Zoladex. Man it hurt. It's a shot, but it inserts an implant to release the drug into my system, therefore bigger needle in my gut. OUCH! This will shut down my ovaries. Yes I think I've started having hot flashes, but it's so dang hot anyway, that it's hard to tell.

After a month, I will get my first shot of Faslodex which is another kind of hormone blocker.  I will then stop taking Tamoxifen.  I will continue with ibrance.

Once you start a certain line of treatment, if it doesn't work, you can't go back to it, so he wants to make sure we get all we can out of the ibrance and make sure that it's not the reason I'm not seeing better results. Hopefully it's the estrogen.

Dr Esplin again told me about how they took 3 tumors from the same person, dissected each one into pieces and examined them. Each tumor was entirely different from the other and not only that, but within each tumor, the different layers had mutated and were entirely different from itself as a whole.

It makes me feel so hopeless. Cancer is so very wicked. How can doctors or drugs keep up with the rapid mutations? My mind imagines some kind of horror creature that you just can't get rid of, it multiplies and gets stronger and stronger until it literally eats me alive.

I also asked if I could ride horses. He told me he can't tell me not to, but if I did it should only be a very old slow horse and only a walk.  Trots, etc. could break my bones.  (I'm wondering if this is the month I get my next shot of bone strengthener too) So I can't do that, or jump on the tramp with the girls. Hopefully, someday, this beast or beasts will die and my bones can gain back their strength? Although, I know that menopause can cause weakness in bones, like osteoporosis.   sigh

For now, I'm struggling with fear and sadness. Every time I think of my kids growing up, graduations, missions, weddings and grandchildren, or even just comments about the future, I wonder if it's possible to be here for at least one of them? Will I even see Kinli, my little 7 year old reach high school?  It tears me apart and I can't come to terms with it.

The emotions that come with facing my mortality and what I may have to endure before it's over are too much for me. I'm only 4 months into this and I feel like  the women and men who do this have much more grit than I have and I don't think I'm up to the task.

Girl's camp

I went to girl's camp last week. Because of Cancer, I went up and down everyday.  I knew I would be good for nothing if I stayed and tried to sleep up there.  It was good to be there with both Maili and Haeli. 
By the last night, My body had had enough and I felt pretty sick around dinner time.  I threw up and went and laid down.  I guess it made the other ladies cry.  It still shocks me how little I can do before I've done too much.  It angers me, it saddens me.  It's a reminder that my life will never be the same.  I wonder how long it takes to be used to the new normal?
I just want to keep living the same way and actually do more than I was doing before, not less.  I don't like being the "sick"one, the different one, the "cancer" one.

I'm trying to prepare myself for my scan and be prepared if something is going to change. I hate being taken off guard.

To ask or not...that is the question

I haven't written much because there's not much to write about as far as Cancer is concerned.
I had my Dr's appointment 3 weeks ago and a couple days after, insurance called and told me my PET scan was approved. so I waited and waited for Huntsman to call. After a week, I called them and they told me my Dr's office hadn't sent the correct forms and they had requested them twice. Called my doctor's office and they tell me that insurance denied my PET scan. After several phone calls and requests, they finally approved it.
I am set for this Friday, July 5th. It's my birthday.  Fun present for my birthday right? I'm just glad I'm getting it done....finally. I'm nervous, however.
Last time I went, I was pretty sure my scan would show that I just had stage 3 breast cancer. Breast and lymph nodes only......then I learned it was everywhere.
I'm scared about this time and what it will show.

A couple weeks ago, Maili mentioned that she knows people are being nice, but she's tired of people asking her how I am doing. I told her it's because they not only care about me, but because they care about her. She knows that, but she says she just wants to forget about it sometimes and when people ask, it makes her remember.  I totally get that.  I have talked to a couple of other people that had and have mother's with terminal/chronic illnesses and they said the same thing. They would be okay until someone asked them.

I don't know what to do about that. I admit that I do the same thing. If I see a young girl or boy I ask them what I know about them and many times it's about their parents. I never stop to think that they just don't want to talk about it.  I'm going to try to do better.

I feel that way too sometimes when I feel like my cancer has become all I am. People ask me how I'm doing and I want to just say fine and leave it at that. But they want more....and honestly, I don't know if I would want them to quit asking altogether either. People can't win, I guess.  I don't know that there's a right or wrong.

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.

Heather

I posted this on my Facebook page today.

This morning Heaven gained an extraordinary angel. This picture is a few years old, but it's how I remember her the most. This was before her body was damaged from the effects of brain cancer treatments. She had a unique kind of cancer and it started when she was about 10 years old. She had to relearn to walk. I don't even know how many times it came back, but the last time was the last time. She has been put through the ringer, literally became deaf, nearly blind, lost tons of of weight, trouble walking and hasn't even looked like the picture below for several years now. She taught me so much about attitude in the face of adversity. She taught me so much about service. She did everything and anything for everyone. She always had a giggle and a smile and of course loved her 2 little girls fiercely. In January, she was given 2 weeks to live. I contacted her and said my goodbyes and she still had a positive attitude. She made it a few more months. Thanks for your example Heather. 

I hope that if and when my cancer progresses so far and my body has crumbled under the effects of the many treatments, that I can have as bright of an attitude as you. Be at peace sweet Heather and rest from your earthly cares. I know you're already serving and giggling.

I'm wondering if I can handle her funeral. I'd like to be there to honor my sweet friend. I wonder if I can compartmentalize and not feel too personal about it, especially when I see her two girls.

Have I mentioned that I hate Cancer!

This week has been kind of up and down. Monday we went to the cemetery and that was good but hard. I I just wanted to talk to my mom, ask her for her wisdom and get a hug.
Also, my drugs can make me pretty moody and I was on a roller coaster.  I've had a couple of days where my left ankle from just below my knee down hurts so bad. Doesn't matter if I'm walking or not. Not much will help it. I've been trying to put off the heavy pain killers as long as I can. Apparently Claratin helps with bone pain as well as Aleve.....which I'm not supposed to take that often because it's a blood thinner like Advil. It has hurt to the point of tears. The past three days though I haven't  felt anything and I've even been doing yard work.  If feels good to act normal

The lessons

Yesterday, for some reason, I ran into a lot of friends. So I talked a lot about me.  It was exhausting.
A lot of them mentioned how I look so good or "normal" or  that I act so normal or upbeat.  I was thinking about this and it made me wonder if I was being fake or genuine? I realized that I'm just being me.
I think we all try to put on our positive face when we go out and I don't think it's being fake. I think it's coping the best and trying to have the best attitude. Some days we are more successful at it than others.

I assured these friends that I talked to, that I cry.....nearly everyday.  I get angry, nearly every day. I have moments of feeling sorry for myself, of feeling selfish, of feeling frustrated, and all the other emotions that come with being human.

I've admitted before that I am in a depression as I process this disease and how it's affecting every area of my life. But I also have a perspective of growth.

 I truly believe that each of us is a spirit son or daughter of God that came here to learn. To learn what we need and it's so completely individual. That's the beauty of it.
Some of us need to have wayward children. Some of us need to have infertility issues. Some of us need to have loss of jobs, divorce, deaths, and some of us need to have cancer.

I don't know that I believe that my Father in Heaven GAVE this trial to me. I don't think He CAUSED cancer in me. But I know he knows what I will learn from it. And I know he is hopeful that I will learn it.  I don't feel like a victim at the hands of God.

I worry sometimes that I will miss the lessons. For whatever reason, the things I need to learn need to be taught to me in the form of terminal cancer.  I worry that if I stay in a hole of grief all of the time, I will miss the lessons.  Will I learn patience? Will I learn humility? Will I learn long-suffering? Will I learn empathy? Will I learn Faith and trust in my Savior?  There's so many things that I need to learn and I don't even know what they all are, but HE does.

I don't want to miss the lessons.  I don't want to walk around with sadness. So when I walk out into the world, I put on my happy face because I have a lot to be happy about. 
I put on my brave face because there's not much I can do about it.
I put on my smile, because I don't know what lessons everyone else is having to learn.   Your trials are no more or less than mine. 

I've said it before and I'm sure I'll say it again, I have an amazing life. I have been blessed beyond measure. I have so many things to be thankful for. I have trials, other than cancer, just like everyone else. I always have and I always will. That's why I'm here. 

I heard it taught that we chose our trials before we came to earth.....or at least that we knew what they were and we agreed to them.  I don't know if that's true. I've never read that from a prophet or anything, but thinking that way makes me a bit more brave. If I knew what I was going to go through on earth, and I still chose to come, I must have known how valuable the lessons would be. I must have known it would be worth whatever blessings I will attain in life after death. And I know there's going to be some amazing ones.

I don't want to miss the lessons.

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.

Trying to get to this point

This is where I want to be. Not there yet....working on it