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!