Faith is hard

Where to begin?
My tumor markers have been consistently going back up. So Esplin started me on a new chemo pill called Piqray in addition to my weekly infusions.

That same week, I had scans. May 13th. Esplin called me back the same night to tell me that everything was still stable!  I was really surprised!

Had my appointment with him on the 19th.   He explained that the fact the markers were going up meant that even though the scans show I'm stable, the cells are more active. He also mentioned that the cells in the bones go into these pockets in the bones and you can't really see them on scansSo I got my infusion along with my monthly Faslodex shots and my 3 month Lupron shot.  It hit me a lot earlier than usual and I was down for the count.  The next day I'm used to being sick, but this time was worse.  The digestive stuff was more frequent and I ended up with a fever Wednesday night.  It was back down by the morning. Thursday I'm usually ready to get going again, but this time I was still feeling sick.  Digestive issues, headaches, pains all over my body and nauseous. Not to mention that my taste has been worsening the past few weeks.  I couldn't even eat ice cream it was so gross.

By Friday I was pretty much back to my normal, but I'm definitely feeling the effects of two chemos vs. one.  Oh also, my hair has started to fall out again.

I'm frustrated and I am having a hard time thinking I have to stay on Taxol when it doesn't really seem to be helping much anymore.... Yet, if I go off of it, what will I do?

I'm frustrated that I'm over a  year into this and I'm no better than I was. Nothing seems to be working very well and we're checking off the treatments way too fast.

I'm working constantly on Faith in the Savior. Faith that everything will be okay no matter what.  It's hard to let go.  True Faith is hard. So very hard.  Being okay with whatever occurs, knowing it's better than my plan, letting go of control of something that I don't have control of in the first place.  I'm trying to practice it and some days or moments, I do better than others.

“Fighting through darkness and despair and pleading for the light is what opened this dispensation. It is what keeps it going, and it is what will keep you going.”
―Elder Jeffrey R. Holland, Created for Greater Things

“If for a while the harder you try, the harder it gets, take heart. So it has been with the best people who ever lived.”
―Elder Jeffrey R. Holland, "The Inconvenient Messiah"

Week ?

I've been wanting to write, but my kids have taken over all the computers and electronics in the house!

We've been quarantined now for 3 weeks and we're all going a bit crazy.

This week is Spring Break for school, so now I'm having to entertain them for even longer in the day.  I think they should just keep doing school and get it over with a week early instead of Spring Break.

Since I last wrote, I have had 2 chemo infusions and 1 doctor's appt.

Kevin hasn't been able to come with me. So he listened on the phone to Esplin.  Nothing very eventful at that visit.  He took my tumor markers and one went up again and one went down. So we wait another month.

Chemo is  Chemo.... the chairs are spread far apart and they took everyone that gets infusions for other things like MS or Chron's disease and put them in another room entirely and left it just for us cancer patients.  They do screening when you first walk in the building and at reception, but that's about it.  I guess I need to get a mask now.

It's been a crazy time and the focus has been so much on this virus and I wonder if anyone in my family will get it and then I wonder if I will get it, and then I wonder if I would survive it, and then I wonder if I'll survive my cancer and it's one eternal round.

It's been interesting to see how people react to this virus. Some just act like it's no big deal and some are so anxious it's crazy. It's a lot like cancer patients. Some people are at a place of "I've been doing this for 10 years and it's no big deal" and there's people that are brand new getting this diagnosis and their world is crumbling all around them. Then there's people like me.  I'm not quite as shocked as I was a year ago, but I'm still wondering if any of these treatments are going to work for me.  As far as my mets go, I'm in no better condition than I was a year ago. I'm not any worse at the moment either....except for losing my hair, my eyebrows, my eye lashes and having more pain when I try to do anything physical.

 I still struggle with thoughts of being ready to write letters to my girls for special occasions and not giving in to those thoughts because it makes me feel too sad.

I don't know what the Lord has in store for me, but this weekend was General Conference for my church and it was fabulous. Full of hope in the Savior, learning to "Hear Him."  Celebrating the 200th anniversary of The Savior and the Father appearing to the prophet Joseph Smith and hearing so many wonderful talks and testimonies.  I know it's all true and I'm thankful for that knowledge. It makes this disease and the fear of leaving my family that much easier. 

Tomorrow I have chemo and then a week off.

World Chaos

Sometimes I have all these things in my head and want to write them down and then I get distracted and forget what I was going to write. So then I don't write and now it's been forever/

Right now I'm on my week off of Taxol. I'm scheduled to see Esplin next Tuesday and do another infusion.

I'm scheduled, but right now our country is in chaos. We're all self isolating and social distancing because of the Coronavirus.  I am in the "at risk" category because of stupid cancer. In addition to not having school or church, we are also not doing friends. 
I'm not too scared that I'm going to get it. I hope I don't and I don't know what my body would do if I did, but I am concerned that I won't be able to get my chemo treatment.  They're really cracking down and closing up places. I got a message this morning from Revere Health that some appointments could be cancelled. We also had an earthquake this morning. Sheesh

The other day I had a weird experience. I think it was Thursday or Friday and we were getting all this information about school's closing and so much stuff about the virus and I was so full of that, that I forgot about Cancer.  For the first time in a long time, I forgot about Cancer.  The reason I know I forgot is that I then remembered.

Remembering is like when you wake up and think it was a bad dream and then realize that it's not.  It's real.  And it hurts so bad.  It's a rush of emotions all at once and it's hard.
I was on facebook and I saw a post from a gal that I've never met, was planning on meeting soon, and is a year ahead of me in this journey and lives right here in my city.  She started on taxol in February and the Taxol actually stimulated the growth of her liver tumors and she is now in liver failure and have been given about 3-5 weeks to live.

She has the exact same mets as me. Bones and liver.  She is a member of my church and believes as I do about life after death. She never married and is around 42 years old.

It hit me like a boulder. I got scared and I cried and went to that dark place.  I crawled out fast, because I dd not want to stay there.  It scared me. and I've been trying to detach from it.

Now I am facilitating school to 4 kids and trying to figure out what is going on in the world.  A little secret I have is that I have kind of wanted the end of the world or the Second Coming to happen....I've been hoping that it will come sooner than later so that I won't have to die and leave my family. So my girls and Kevin won't have to worry about losing me.  I'm sure this is all a sign of the times, but theres's still so much that needs to happen for the end is here.

I sound like a real downer today.......maybe cause it's rainy and we've been locked inside. 
I'm doing okay and I'm hopeful and anxious to find out what my body is doing with this cancer. I hope that it's kicking it's butt.  I hope and pray that my tumors are getting weaker and dumber and won't be able to hold on any longer and just dissolve away.  I'm hoping and that's good.

Panic at the Disco

Valentines Day at 5:30 pm Esplin calls me and says your tumor markers have gone back up.

He tells me that the radio oncologist doesn't think we should do radiation but rather mastectomy. And he wants me to start the Red Devil.  That's the hardest chemo.

He panicked and so did I.

He let me take the next week off of chemo and do my scans on Friday.  So last Friday, Feb 21st I had both CT and bone scans.  I was super scared of what they would find. Scanxiety is real folks!

My appointment was on Tuesday.  My scans came back stable.  No progression.  No shrinkage either, but no progression. Even those dumb lymph nodes didn't grow. 

As a stage 4 patient, that is a victory.  I need to get more excited about those little victories.

He told me he panicked a bit and that's why he doesn't like to go by tumor markers alone.

So for now I'm continuing with 3 weeks of Taxol and then one week off.

I am the kind of person that needs a light at the end. A goal to reach.  I have to gear myself back up to continuing with chemo.  It's a serious mental effort on my part to be able to keep going.
I'm so tired of being tired and sick. I'm tired of being a burden to others.  My local church congregation has been feeding my family for 3 months and I feel like a burden.

I'm trying to teach myself how to be a sick person. To live with a terminal (we'll call it chronic) illness and still live.  I want to just do whatever I need to do even if I feel sick.

During the week off, Kevin and I talked about how I want to push for a mastectomy.  It just seems in my head that the breast is the one that's causing most of the alarms. As much as I don't want one, I just want it gone.  I told Dr. Esplin this, and he called my surgeon...remember Dr. Tittensor?  Anyway, they and the radio oncologist all feel the same.  Until I can get better control of my bones and liver a mastectomy would do more harm than good.  For one reason, the data shows it doesn't prolong life. Secondly, for the 4-6 weeks during preparation and recovery, I can't take any of my chemo meds and my bones and liver and lymph nodes can take off and get out of control.  So until we have better control over them and if my breast is still causing issues, then we'll revisit the mastectomy.

I'm glad that I'm at least stable. Now let's see shrinkage and my ultimate goal of No Evidence of Disease!

The Vainness of Cancer

yes I googled it, Vainness is a word.

I think at some or many points in our lives we all feel insecure about our looks.  As we grow older, I think most of us realize that our self-worth isn't based on how we look, but more about who we are.

However, I think we still care about our looks. That's why we buy cute clothes, get our hair done, wear makeup, etc.

Cancer has taken that all away from me.
I've struggled with my looks lately. My  hair is nearly gone. My eyes look sick, my skin looks sick. and I'm gaining weight.

Weight has been an issue my whole life. Everytime I seem to get a hold of it, some major life situation comes up that derails my efforts.

I'm on a steroid before my chemo that makes you gain weight. I'm now in medical menopause which makes you gain weight. I'm on another anti-estrogen pill that makes you gain weight.

In the middle of feeling so crappy physically, I'm feeling insecure.

When I first got diagnosed with Cancer, I had a brief thought that I'd lose weight and that would be my silver lining. After all, in all the movies, cancer patients are always skinny and gaunt.

Turns out, most women in my "groups" have gained weight.
It's just not in my cards. Sigh

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.

Dr.'s appointment #3

Yesterday was my one month check with Dr. Esplin. I came with more questions and left with some answers and a boost of hopefulness.

So our blood is made in our bone marrow. The drugs I'm on as well as my cancer in my bones, affect my bone marrow, so I've been going weekly for blood draws to check my white blood cell counts.
They've been holding steady. I'm on my off week of ibrance chemo right now and he checked my counts as well as looked at my counts from last Friday......which was at the end of my 3 weeks on.  My counts are doing really well, which means my bone marrow is doing really well.
So I don't have to go for weekly blood draws anymore.....just at my monthly appointments.

I did get an infusion of Zometa which is a bone strengthener. I will do this once every 3 months. The reason for this is that as a tumor clings to a bone, it sends out stuff that eat away at the bone around it.  As the tumors shrink, I could be left with holes in my bones that will make it easy to fracture them.  The Zometa is supposed to help the bone heal faster and regrow itself. They use this same stuff for Osteoporosis. 
I went into the chemo room and just couldn't look at the people sitting in those chairs. Luckily they took me in the back to some different chairs and I sat for a half an hour with an i.v.  
I have been told that at some point, chemo will be used for me. I just can't look at those chairs yet. They scare me.

We finally got to see the images from my PET scan.  I have so many more spots than I even imagined.  I was trying to be generous and say maybe I have 20 spots, but there's more. Too many to count. And those are only the ones that the scan can pick up. It's everywhere.

This is one picture of me from the back. All the white spots are cancer.....the bright ones and the not so bright ones......except for my brain and for the big white spot at the bottom, that's my bladder.  He was rotating it while I snapped the photo, so it's kind of not very clear and it's only the back. It doesn't show the ones in the front or sides.

TDr. Esplin took another look and feel of my breast and lymph nodes. The good news is that it's looking and feeling so much better and he can only feel the one really huge lymph node and it's definitely smaller.  As he pressed on my spine and ribs where I have a gazillion lesions, there was no pain.  I still have pain in my legs and in my shoulder blade and in my chest.

He sounded quite optimistic that the drugs are working.  I was happy about that.

We asked him about my tumor markers.  The thing about tumor markers is that if they're reliable, they're helpful. If they're not, then they're not.  
Certain proteins from tumors get released into the blood and the blood tests check for this protein. As the number goes up, it means that there are more tumors OR that a tumor is getting bigger.  If the numbers go down, the tumors are shrinking or disappearing. However, tumors are very smart suckers and they mutate so the proteins change and that makes the tumor markers in the blood unreliable. The only true way to know if cancer is progressing or regressing is scans.

Dr. Esplin wants me to be on 3 full rounds of ibrance before they do another scan. So I thought I was going to get one mid June, but he wants to wait until late June or early July. sigh

As tumors shrink and I'm left with just a couple, I will probably get radiation on those and probably regular chemo at some point.

I asked for more clarification about why no surgery and why no hysterectomy. Pretty much got the same explanation.....neither one will help much now that I'm stage 4 and doing those will cause me more trouble and not really help.  I also learned that ibrance is better than i/v/ chemo. If this was me 5  years ago, I would be on regular i.v. chemo, no doubt.  ibrance is only about 5 years out from being FDA approved. Studies are currently being done are other stage cancers to see if ibrance will help them.  I guess when they test a drug, they go backwards from stage 4.
He said that after the testing, which takes 5 + years, if ibrance and others, show to work on other stages, then regular chemo could become a thing of the past.  This would be really great news for everyone. ibrance and these targeted chemo's are so much easier on people. Not everyone tolerates them as well as I am, but there's still so much less side effects than the other chemo.

The diagnosis

The doctor called with my official diagnosis.  The good news, I guess, is that I don't have inflammatory breast cancer. The bad news is that I have Invasive Ductal Carcinoma. It has spread to my lymph nodes. We don't know yet what stage and if it has spread to other areas of my body. Oh please no.

The good news is this is the most common type of breast cancer. The bad news is this is breast cancer.
I have been trying to process it and it still doesn't seem real. I feel like I'm playing a part in a play. A very dark part in a very dark play.
The grade they gave is a grade 2. What does that mean?  Simply between a 1-3 on the abnormality of the cells. Mine are quite abnormal. Also, I read that it has to do with the growth rate. Not slow, not too super fast. Somewhere in between.

I spent all day yesterday on the phone. Some conversations with people I know who have gone through. One I talked with was very very bleak. She said while on Chemo, she went days sleeping and not knowing what what going on with her kids. I CANNOT do that.  I need my kids so much. I need to be a consciously involved mom. They need it. I need it.  Others I talked with weren't so bleak. Every one of them did say that Chemo is so wicked.


I have so many wonderful people that have already reached out. I am so grateful for each and every one of them. I just don't want it to be this way.  Part of me wants to hide in a hole until it all goes away, and part of me wants my friends to gather around me.

Today I meet my surgeon and will learn a lot more about my cancer and what to expect.