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

My last appointment with Esplin was two weeks ago.  He told me that he'd like me to continue with Taxol for as long as it's working.
It's good but not so good either.

It's good because my tumor markers are going down, which means that the cancer in my body is responding to the Taxol....it's not as active and/or is shrinking. Except for my breast and the few lymph nodes,  retroperitoneal lymph nodes.  So for now, I stay on it.  He told me that he wants my tumor markers in the 20's.  Currently they're both near around 300.

I will get more scans on the 21st, to see what's going on again.

I'm getting really worn down emotionally and physically. I'm tired of feeling sick, of being the patient.  Of laying around. I'm trying to get to the point of just doing everything while I feel sick. I am learning how.  It's so hard to get myself up and care about things when I feel so yucky, but it's what I am going to have to do.  I may have to be on this for a long time and I need to learn how to be sick and push forward.

My hair is still thinning. I have to wear a hat in public. There's still a good amount, but I can't do anything with it. I'm trying to decide if I should shave the rest, but I just can't make myself do it.

Things are okay and I'm doing alright.  I'm praying that my tumor markers are going way down.

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