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.