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.

When you ask

I have been struggling with trying to appear "normal" with my kids.  I try and fake it when they're around and want them to have a happy and healthy mom.  I don't know how long I can keep it up, but I just want their lives to be as normal as possible. Having said that, I question how much I should hide it.  I just don't want them to be worried about such things. They need to concentrate on friends and school and growing up.
I often get asked how I am in front of them. I struggle with being honest with others, yet shielding my girls. 
Right now, I have decided that if someone asks me how I'm doing, I'm going to say just fine or great, etc.  If they really want to know, they can ask me privately.

Cancer has taken over my life and I'm trying to keep it out of theirs as much as possible.

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.

PET scan #2

So after Dr. Esplin literally fought with the insurance medical director and they sought a second opinion and after being approved and then the approval retracted twice, I finally went in for my second PET scan.

Pretty  much the same as last time. I found out the reason they don't let anyone in there with you or let you read or do anything, is because reading causes the sugar from the drink to go to my brain because it's more active.  They want as much of it as possible to go to the tumors. 

Had to wait the weekend, and got the results Monday night.

The results are mixed. Some good, some the same and some worse with a few new lesions.  I feel discouraged.  I was hoping for at least stable. 

The new plan of action is to put me into medically induced menopause by giving me shots to shut down my ovaries.

I also went in for a blood draw for Foundation one testing. I am not quite sure what this is yet, but I think it's kind of test that shows what certain drugs work best with your DNA.

So I will get a shot on Monday and continue Tamoxifen for another month and then when the Foundation one testing is in he'll switch from Tamoxifen to a different one.

I'm feeling discouraged and scared. I know it's not terrible news, but it is.  All cancer news is negative news.....unless it's positive :) All my "what if's surface." All my fears of the unknown start yelling at me in my head.  All my emotions about leaving my family, causing pain for my family, feeling like a burden to my family come to the surface and I mourn.

So I'll take a few days to feel it and then get back on the horse with a positive attitude.

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.