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.

Scanxiety

CT scan and Bone scans on Monday.  Getting so nervous.  As much as I look forward to it because then I'll know more about what's going on in my body, it scares me to death. What will the outcomes be?  Will I have to change treatments again?

Mixed results

So I had my appointment with Dr. Esplin a week ago.  I got my 2 shots of Faslodex in my rear/lower back. Man that smarts!
Then he switched me from Zoladex( the shot for menopause) to Lupron. Lupron also is given in my rear, but now I only have to do that every 3 months.
I also got my month's supply of Affinitor.
On Wednesday, my tumor markers came in.  In breast cancer, they are looking at tumor markers CA27.9 and CA15.3.  Tumor markers aren't totally reliable, but so far they've done pretty well at letting us know what's going on in me. 
Ever since the beginning, my tumor markers have been going up and up and up.  This time the CA27.9 came down from 701.2 to 658! That's the first time something positive has come back!
However, the CA15.3 went from 492 to 537.9.  So the results are mixed. 
It is true, that when a tumor is dying, it breaks down into your blood stream and sometimes they can go up.  That's why he doesn't rely too much on them.

I am scheduled for a CT/ bone scan on Sept. 30th. I hope it gives us  a good look at what's going on and most especially, I hope it's positive information.

I also met a gal that lives nearby who was diagnosed 4 years ago. She invited 2 others that are 3 and 4 years into this. I asked questions and listened.  It was a weird feeling, just sitting with these strangers, yet there's so much understanding there.  I didn't want to be there cause I didn't want to be in this "club."  I don't know how long it will take me to accept my new life and what's to come because of it. I just know I'm not there  yet.

Chemo brain

I read this article and thought, Oh my gosh, I have every single one of these! Chemo brain is real. Although, I also think it's this combined with a little PTSD from my diagnosis and also depression. I noticed some of them after my mom died. 

I get frustrated because I feel like I used to be a pretty "on top" of it person, and now, I just can't seem to think right.  I have left the hose on in my garden for 2 days, I always forget what I was about to do. I can't concentrate on anything, I always lose my train of thought mid sentence...... etc.  I feel like I've let others down when I forget to call them back or return a text.  I hope people forgive me.  Here's the list from an article

Chemo Brain Is Real And Here Are 10 Symptoms Associated With It

BY ANGELA BANKER

1. Feeling Slow – Many people with chemo brain report feeling slow in their thinking and mental processing. Figuring out a problem that has arose may take much longer than it normally would.
2. Forgetting Things I Already Know – Self explanatory
3. Lack Of Concentration – While sitting in a meeting, you noticed you cannot recall the last five minutes. What were we discussing again?  Where did your mind go during the meeting? You can’t remember!
4. Losing Your Train Of Thought – You are having a great conversation with your best friend when all of a sudden you forgot what you were talking about. It doesn’t happen just once, but multiple . . . Wait! What was I saying again?
5. Forgetting The Simple Things – Those small, everyday things can be the hardest to remember at times. You may rush out the door and get to your car before you question yourself, “Did I lock the front door?” You may get all the way to work before you call and question your husband, “Did I turn off the iron?” You could return home to notice you failed to turn off the television when you left earlier.
6. Trouble Multi-tasking – Multi-tasking is an art form. When you add chemo brain into the mix, it becomes more difficult. Trying to do two or three things at once during this time is challenging. 
7. Difficulty Learning New Things – Focus and concentration are qualities that go into learning. Chemo brain often affects each of those making learning that new skill even harder to do. 
8. Forgetting What You Were Going To Do – You stopped cleaning the kitchen in mid-clean to grab something in the living room. As soon as you walk in there, you ask yourself the 4 W’s. Why did I come in here? What was I going to do? Where was I really going? When did I forget?
9. Difficulty Speaking – That moment when you can’t remember what your favorite box of cereal is called – “That box, over there, in that thing. It’s red. It’s this tall. It’s . . . “ – can be embarrassing. Often times you know what you are talking about, but you just can’t seem to get the right words out.
10. Mental Fatigue – Add this to the lack of focus and the inability to concentrate. Your mind is just tired. Your brain feels overworked early in the afternoon leading to more confusion when you’re trying to follow a conversation.You could use a mental nap and find zoning out is becoming a frequent habit.                                                                                              You may find yourself reading this list saying, “I’ve had that and I’ve never taken chemotherapy.” It’s true! We have all experienced these. Imagine experiencing it ten times more frequently, or on a daily basis. Chemo brain takes those cognitive issues we have and intensifies them. Be patient with a person who is experiencing these symptoms. Often times they become frustrated themselves and would appreciate the support.