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!

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.

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.

The funeral

 I've always liked funerals. It doesn't matter who it is or how good or bad they have been, the funeral is full of all the good about that person. They usually don't mention the misdeeds or flaws of character, just the good and that person is celebrated

Yesterday I went to my friend Heather's funeral. The one I mentioned in my last post.  I had worried about going, thinking that it would be too hard with the sting of my diagnosis still fresh. I decided, however, that I could compartmentalize and go for Heather.
It was beautiful, but the moment I saw her two little girls walk in I just started to cry. I thought of my own sweet daughters walking with their amazing dad following my casket and it was hard. I managed to pull myself together and just listen to stories about Heather.

I may have written this before, but at this point in my journey, I'm not scared of death. I've read a lot and studied a lot and feel like I will be so okay when I die. I know I will be happy and safe. That's how I feel now, but ask me again when the time comes and I'll probably be full of fear. Anyway, right now I feel okay about how it will be for me when I die, but I worry about my family.

I don't want Kevin to have to go through losing a spouse and trying to take care of our children on his own. I've tried to talk to him about remarrying, but he won't talk about it.  Regardless if he does or not, it doesn't make things any less painful. For him to be alone, for my daughters to have to endure losing their mother at such tender ages. I hate that thought and I pray everyday that I will be allowed to stay here long enough to raise them and if possible, see them marry.  I want to grow old with Kevin. He is my favorite person, my everything and I want to grow old with him. I don't want him to grow old alone or with someone else.

I don't know how long I have, I don't know when it will be that there are no new treatments to try, but I hope that day is far far away.