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.

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

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.

Chemo

So it's been awhile and a lot has changed. My tumor markers did come down and I was really happy about that.  But, a week ago yesterday I had an MRI done on my breast.  I had to wait 2 hours!  Then I waited over the weekend and still no results. I had called several times and the imaging just wouldn't send the report.  Finally, Tuesday I got to talk with Dr. Esplin.
My breast looks worse than it did way back in February. He feels like we just haven't got the response we need, so I start Taxol on Friday. Taxol is an infusion chemo that I will do every Friday for at least 3 months. My hair will fall out and a lot of people have trouble with neuropathy.
I feel kind of numb. I guess I don't feel quite as scared as I did back at the beginning of all of this. Just because I've had a lot of tests and needles and scans and infusions.  I'll be honest though,  I'm scared about losing my hair.  I'm not a scarf person or a hat person or a wig person.  They have these halo wigs that are hats with some synthetic hair that peeks out.  That's probably what I'll do. I don't know.
I'm discouraged because I was hoping I would be a lucky one that didn't ever have to do the IV chemo.
From people I've talked with though, Taxol is usually tolerated pretty well. Not as bad as some others.
As always, some people get sick, some don't. All are fatigued. Some even just have thinning hair and not a complete loss. So we'll just have to see.
The girls are a bit worried, because it's easy to forget I'm sick when I don't look like it. It's causing a lot of anxiety for Maili and I worry about all of them.
I try so hard to shield them for all of this. It would probably be healthy for them to be in on some of it, I just want them to have as normal of a mom as possible while they have me.

November appointment

So I had my Dr.'s appt. on Monday. Got my 3 month Zometa infusion(for my bones) my monthly Faslodex shots (OUCH) That's the one that  fights cancer as an "estrogen receptor downregulator."
Dr. E is concerned about the look of my breast, so he ordered an MRI for next week. It is looking like it did more at the beginning of all this. 
After the MRI, if it shows issues, but the rest of me is looking okay, then they'll radiate my breast.  That scares me. I hear all sorts of yuck about radiation. Burns in the skin and nausea, and all kinds of stuff.

infection and side effects

At my last regular appointment, I told Dr. Esplin about the redness in my left upper breast. He checked it out and didn't seem concerned. I also told him about the pain that moved from my upper arm to the middle to then my hand. He had no answers. (This happened once before when I was on Ibrance)
A week or so later, I noticed my hand was swollen and really hurt. My chest was not only red, but hot.  I got scared, called  and he prescribed some antibiotics. Took those and it just got worse.  Called when they were gone and they had me come in right away.
He had me get an emergency ultrasound to check for an abscess in my breast and a blood clot in my arm.  Both came back with no sign of either. So he prescribed stronger antibiotics. 
It seemed to help the pain a bit in my breast and a lot of the swelling in my hand went down, but by the end of the antibiotics, I didn't feel like it was taken care of.  Went back in and Dr.Esplin thought it looked better so we're just waiting.  I don't like when they can't tell me what is actually going on. 
He's a little nervous about my breast. He's worried it's the inflammatory part raging on. We'll keep an eye on it, but I may have to do the hard chemo. 

So we wait.  My appointment is next week and I'm anxious to see if my tumor markers are coming down.

My back has also been giving me problems the past month. I had one day when it hurt to stand and it hurt to sit.  It scares me what is happening in my spine and ribs.

I'm going to list all my side effects as a way to help me remember. Sometimes on my MBC groups, others ladies have questions and it's hard for me to remember details.

I'm not sure which drugs are causing which side effects, so yeah....

Extreme cotton mouth. Always have a a nasty taste in my mouth
Food doesn't taste right.
swelling and pain in left arm that moves down into hand
bathroom issues
fatigue
dry nose and throat
pain in back, sides, neck
BRAIN FOG!  I hate it so much!

I'm on one drug that's supposed to make me gain weight and one that CAN make you lose weight. Of course, with me, losing isn't happening.  For now, I'm at least staying the same.

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.