anxiety

August Is My Trigger

stickit2stage410 Comments

A trigger is something that sets off a memory tape or flashback transporting the person back to the event of her/his original trauma.

 

Every year since 2013, August has been my trigger. There is no getting away from it. I’ve tried. I keep trying. Every week of this month has a day that I can’t escape from. Every one of those days plays back in my mind like a scene in a movie. A bad dream that I will never wake up from. The sounds, the smells, even the tone of the voices. It all comes back.

They say that one way to face your fears or anxiety is to talk about it. Verbalize it. Take the power away from it. That may work for some people but that hasn’t worked well for me. I’ve tried it. Every year.

Once in a while I try to bring up a memory early in the month: “Today’s the day I went to the Doctor, remember that?” The reaction is never consoling or understanding; its more like: “Why would you want to remember that?” or “Ugh I’d rather not” or worse…silence.

Believe me, nobody but me knows better what it was like living thru that month 5 yrs ago and every day since. Not that it’s all been shit, but what makes it all suck worse is when my trigger is made to be about someone else’s feelings. That just makes me want to throw things – at other people.

I have gotten better at having meltdowns alone -at night, in the dark, where it’s just me and my pup. I still do have those days, when the emotions from whatever memory that plays in my brain, creeps out. Those days I play the “I don’t feel good” card and keep to myself having as little interaction with anyone else as possible.

Then there are days like today. Today was my monthly check-up with my Oncologist and the dreaded Faslodex and Xgeva injections. Everything was fine – Until I pulled into the parking lot of the Cancer Center. My mind flashed back, just for a second, to my very first appointment. Before treatment even started. When I parked my car, I had to sit and wait until I was able to compose myself before I could go in. I couldn’t stop it. I tried. I was so pissed.

I get so angry at myself when it happens. I want to grab myself by the shoulders, shake myself and say:

“This is ridiculous. You should be on top of the world. You’re still alive after 5 yrs with this bitch. Stop it”

I wish it was that easy.

Simply put, August is 31 days of PTSD, Flash Backs, Panic Attacks, Anger, & Sadness, wrapped up in a blanket of Survivor Guilt. And it’s not over yet:

 

August 2013 Timeline

August 7 – Saw GP possible kidney infection

August 9 – No infection, Sent for CT

August 13 – Sent for MRI

August 16 – Told over phone “Cancer found in bones”

August 24 – DVT Blood Clot

August 28 – 7:30am PET/CT

August 28 – 5:30pm – The phone call that changed everything.

 

So, if you happen to see me on August 28th, the day I recognize as my 5 yr Cancerversary, no words are needed. Just raise a glass of whatever beverage you’re drinking that day and offer a toast to whatever additional time the universe feels I am worthy of.

Here’s hoping the universe continues to be extremely generous.

Inside Anxiety

stickit2stage46 Comments

Fun fact about me: I occasionally suffer from panic attacks. They began shortly after cancer became part of my life. They come out of nowhere. Randomly. Usually at the worst possible times.

I’m having one now.

I’m trying to distract myself.

If I don’t and I let the feelings wash over me, I’m afraid the tears will spill out and choke me to death. It’s a soul crushing feeling.

I know, deep down, that every day I’m inching closer to that day.

It takes my breath away. I can’t breathe.

It hits my chest. My eyes fill with tears.

It’s a battle to control my breathing so I don’t hyperventilate. I concentrate on not letting the tears leave my eyes.

I can do it. I can do this. Don’t let them see. I can’t let anyone see.

I’m ok. Nothing is wrong. Everything is ok.

Even though it’s not.

Today it is.

Right now is all that matters.

This moment.

Hold on. Hold tight.

Concentrate.

It’s almost over.

Breathe.

Breathe.

Quick Update

stickit2stage45 Comments

Friday is my regular appointment with my local Oncologist and for shots.

Last month I mentioned that I was having some new pain in my ribs/back – right side (cancer side that was previously radiated). At the time I wasn’t all that concerned but brought it up because that’s what we are told to do when we have “new” pain.  My Doc asked if it was bad enough to order a scan and I declined. Not all my blood work was back and I was hopeful this would subside on its own.

The next day the labs showed my CA 27.29 was elevated but not alarmingly so, and I shrugged it off.

In the weeks that followed the pain increased making sleeping difficult. I contacted Palliative Care and asked for a new script for morphine. The same script I was previously on and do take from time to time. In following up with PC, it was decided that an extended release should be added to give me more of a consistent level of pain control. (I feel like I’m going back in time).

Today, my labs came back. My CA 27.29 is up again. For me, it’s the highest it’s been since it came down 3 yrs ago.

To put it all in perspective, while pain and rising markers can and sometimes do mean there is a progression of Cancer, it can also mean my body is reacting to inflammation of some kind. Markers do go up for reasons other than Cancer.

I’m trying to remain optimistic and not assume that this all equals something bad. (ok, who are we kidding, I’ve already started looking at what my options are if I have to stop Ibrance).

So, I will discuss with my Oncologist Friday, see what she thinks and go from there.

Happy Hump Day!

A Little Bit Of PTSD

stickit2stage49 Comments

Today, I’m headed to Manhattan ahead of my PET scan and appointment with my Oncologist at Sloan Kettering. I usually enjoy the drive down but this time I’m a little uneasy.

 

Last year at this time I had a scan and was told the Lymph nodes under my left arm (non-cancer side) lit up real pretty. That set off a battery of tests and biopsies to confirm the possible progression and to see if the pathology had changed. I also had my ribs biopsied again as they also looked suspicious on the scan and had been bothering me for some time.

It had all turned out OK. No progression in either the nodes or the rib but it was probably the second most stressful time since my diagnosis AND it all happened right before my birthday, which happens to be this Sunday.

As I sit in the passenger seat of the car writing this and remembering the events of last year at this time, it’s hard not to let my mind go to that place. That place where I imagine my Oncologist saying she’s sorry but the Cancer has spread to (pick an organ of your choice). Don’t get me wrong, I’m not being “negative”. This is fear and the fear is real. At some point this IS going to happen. It COULD be tomorrow.

So, until then, I will put in my ear buds and listen to my favorite music that takes me to my happy place and try to refocus my thoughts. There is Adam’s graduation to look forward to next month and all the festivities leading up to that day so regardless of what happens, I’m not going to let it get im my way.

See y’all on the other side…. xoxo

The Mind F*ck

stickit2stage42 Comments

Ask anyone. Living with Cancer is a total mind fuck and if you’re living with Metastatic (terminal) Cancer like I am it’s a never ending mind fuck roller coaster.

image

Monthly blood work to see if the cancer is waking up and planning a move. Regular scans to see if your insides are glowing. You stay on top of your treatment plan to make sure the blood work and the scans stay ‘normal’ but when it comes time to do these things that’s when it becomes a Mind Fuck.

You worry before the tests, you worry during the tests and you worry after. What will they show? Will I glow? Is my treatment working? Can I exhale until next time? I don’t feel new pain. I bet my headaches mean bad news.

See what I mean? Total Mind Fuck.

I’m in deep, deep Mind Fuck territory right now. It’s a scary place to be in. It’s a different place than what I described above but could toss me up there if I make that call. If I tell. I don’t know if I want to. I’m pretending it’s not real, that the pain is not real. In my head, it going to go away. In my head, if I go for imaging it’s going to be negative. I’ll be just fine. So there’s no reason to tell. No reason to make that call. Or is there?

Mind Fuck

The Cancer is in my bones. The pain is in my lower back – my spine, my bones. The pain is real. It’s not going away. It’s getting worse. There’s a small lump. When I lay down or sit down it feels like I’m against a rock. There’s no rock to remove. I pretend the pain isn’t there. So, I put on a band-aid of pain meds and ignore what I know I need to do. I stare at my phone. Mind Fuck

I don’t want to be the “Girl Who Cried Wolf.” I don’t want to run to my Oncologist with every new ache and pain paranoid it’s more cancer and for the most part, I don’t. Mind Fuck.

image

I’ve not had good experiences with imaging. I’ve had tumors missed, fractured ribs called ‘inflammation’ and PET scans not pick up active cancer.  Mind Fuck

The scenario plays out in my head. I pick up the phone. I call my Oncologist. She examines me. I go for a CT or MRI. She tells me it’s nothing. The painful rock in my back and the shooting electric tingling down my leg to my foot is “nothing.” Complete and Total Mind Fuck.

The next appointment on the books is April 22nd. In my heart I know that’s too long away. I also know no matter how bad the pain gets I won’t go to the Emergency Room. I stare at my phone. Mind Fuck.

This can’t possibly be new metastasis. I JUST started a new treatment plan in February. Ok, yes, my tumor marker did go up a little bit this last time. But that doesn’t mean anything definite. Most people have progression after MONTHS of being on a particular treatment. Not two months. Right? Mind Fuck.

I stare at my phone. Maybe I should wait for my next labs? If my markers go down then maybe it’s nothing. Or maybe it’s still something. If I wait, those little bastards could travel anywhere. Mind Fuck.

Sigh, I’m making the damn call.

Just Don’t Think About It

stickit2stage412 Comments

I haven’t written in a while. I’ve been dealing with pain issues and getting thru the holiday season without needing bail money.

First, my pain has been off the charts. I’ve been having horrible pain in my hips/pelvis and back. The morphine I’ve been on isn’t helping and that’s not good. After emailing my Oncologist back and forth she increased my 12 hr pill to 2 pills every 8 hours with a separate 10 mg morphine every 2 hours as needed. It helps, but unfortunately, I’m also sleeping. I can’t stay awake with this increase. So, I only take the higher dose after Adam is home from school.

Now, on to tonight’s rant. Everyone deals with having a terminal or chronic illness differently. I happen to have a large network of friends on Social Media that I talk to daily. Whether I’m venting and getting support or I’m helping someone else with an issue. Sometimes we don’t even talk about cancer at all. When I bring up my Social media friends some of my family members think I’m doing myself a disservice and actually forcing myself to think about my situation and bring myself down. “Just don’t think about it.” Its what I hear often and it drives me bat shit crazy. I can’t do that. I mean its completely impossible to get thru a day without thinking about cancer in some way, shape or form. Its my life. Its what I know. Its not going away. Its the equivalent to telling a parent to not think about their child. Not thinking about my illness isn’t going to change anything. Its not going to ‘cure’ me. Its not going to extend my life. Its not going to stop the cancer from growing inside me. So, let me be. Let me surround myself with people that understand, that know what its like. Let me talk to people that can make me laugh thru the tears, that understand my morbid sense of humor and don’t judge me.

The only good thing about my cancer is finding these folks, bonding and forming the friendships I have with them. I’ll be honest, cancer isn’t making me a better person, its not making me look at life thru rose colored glasses like you hear from some people. Cancer wasn’t the ‘gift’ some people want you to think it is. Except, for friends like Mia, Lulu, Melissa, Nancy, Annmarie, Andi, Judy, Sandy and many, many more there is nothing good about cancer. Nothing.

So, stop telling me to ‘just stop thinking about it’ because I’d have to stop talking to my friends and I need them like they sometimes need me. Respect that I know what’s good for me. Respect my feelings like I respect yours.

Friday, January 9th is scan day. By the end of the day I’ll know if the pain is the cancer spreading. I’ll know if the treatment I’m on has to change. I’ll know if its just my hips or other bones or organs. I will go thru this week with a smile on my face and I will act like everything is OK. I will also be thinking about it. I will talk to my network of friends like I always do. I will also be thinking about it. I will have their support and they will make me feel better in a way only they can do.

And I will also be thinking about it.