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.

Hair today gone tomorrow

It's been awhile since I've updated. I just haven't wanted to.
I made it through Christmas and mom's 1 year death anniversary. I can't believe she's been gone 1 year already. Hitting the year mark is hard because before that, you can say, last year mom said this or we did this with mom.  Now that a year has past, I feel further from her.

I have now finished 8 treatments of Taxol. Not gonna lie, I absolutely hate it. I just don't want to do it anymore.

I had scans on January 3rd. CT and Bone scans.  My bones are stable.  No growth, no regression. I was hoping for regression.  My liver lesion has shrunk a bit.  I have a lesion in the middle of me in the retroperitoneal lymph nodes which is behind my intestines and closer to my back bone than my belly button that has been growing consistently for that past few scans. It's about the size of a large plump grape. and some others near it that are growing too.
My breast doesn't seem to be responding to the chemo.

Overall, he said that my cancer is very heterogeneous....which just means that the tumors all have their own DNA and so we haven't been able to find a treatment that works for all of them.  It frustrates me. and discourages me.  Maybe I need to be more realistic about my expectations.  I keep hoping for miracles and regression.  My goal is to get to a point of No evidence of disease anywhere and then just stay on the maintenance drugs for years and years while the cancer sleeps.  Maybe that's not realistic, but it's still my dream.

So, he doesn't want to jump ship too early with any of my treatments AND my tumor markers are coming down so we will stick with Taxol until the end and then go from there.
I'm pretty sure we'll have to do radiation on my breast, because it's just not responding well.

I thought I was in the clear with hair loss as nothing happened until after treatment number 6. So it has been coming out but not in clumps. I definitely can feel and see a difference at how thin it is, but some others can't.  I assume with 4 more treatments to go that it will continue to come out and I will be bald.
It's interesting with all the scariness of cancer, how worried I am about my hair.

The first day, I stood in the shower and ran my hands through my hair and had so much come out and I stood there and cried.  Now it's just daily that I get lots coming out.

My hardest days after chemo seem to be Tuesdays and Thursdays, however, I'm feeling yucky pretty much everyday now. I can tell that I'm not bouncing back as easily and the "poision" is taking it's toll on me.  So far, Saturdays are my best days.

Hopefully that catches everyone up at where I'm at.  Here's to 4 more infusions of Taxol poison! blech

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.