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.