stable ·ish

Short and the Long of it... I NEED to not do scans before Christmas. 

Scanxiety- the stress associated with routine cancer scans.

It's real- it's bad. The scanxiety. You can't logic or busy your way out of it. It just is. It is cumulative and hard and you do the best you can to get through without driving everyone around you completely bonkers. 

Phil finished up his not 1, but 2 online Air War College Courses. breathe.  That lightened his load a bit. sts. sunday night-So when do you want to head into chemo?  

Second left after never, buuuut since it's keeping me alive- let's just do it for shits n giggles. 

Didn't we just DO chemo- isn't it next week?

Actually- this is week 4- the new timeframe we are trying since the fatigue is getting bad and my platelets are not bouncing back. Not crawling back. They are just leisurely sprawled, not doing a lot but they are getting tired and I could use some fresh ones. Especially since everyone is sick with something. 

sexy PET scan bathroom selfie. 

When  I called to get my PET scan results- I interpreted visceral disease stable, we are watching 2 spots- one on my pelvis, one on my spine. I have an appointment with my onc on the 22nd- so I figured we'd discuss then- start the plan ball rolling for these spots if they are gonna be a problem.

I was hoping for N.E.D.  NO EVIDENCE of DISEASE. 

Go to https://snarky-cancer.myshopify.com/  Snarky Cancer rocks. 

I would be happy if N.E.A.Ds were met. NO EVIDENCE of ACTIVE DISEASE. 

I got Stable. with 2 spots. Stable is good where I am. It's been 5.5 years that I've been living with Breast cancer.  4 years I have been living with METS- Metastasis. Cancer cells that have journeyed and set up camp in other parts of my body, also called Stage IV(4). The goal is to tuck them in and get them to sleep as long as possible. They used to call it Remission-  complete NED. But we have learned that cancer cells are pretty adept at survival and use some ninja cloaking skills to escape detection and lay low until they can seize an opportunity to attack. 

I run(figuratively- there is no running here unless cookies are burning or something equally as important. ) in many cancer circles. I know many in various stages of cancerdom. I cringe when I see the declaration: cancer free. I have seen the devastation when the cancer comes back. but but but the doctors said it was gone. And that my friends would be called a cure. Each cancer is as individual as the person dealing with it and although some cancers have treatments that work well- there are many many more that don't. Worse yet are the options if the cancer comes back. 

Living la vida mutantville: we often hear- oh good it's a NEW cancer and not metastasis. Because well mets suck. They are terminal. They can be managed for a time and many bounce from treatment to treatment, waiting for the next option, hoping it comes out of the pipeline before this line of defense quits. Having mets, living with cancer is much like being a mutant. A lot of waiting and worrying and seizing the moment among all the unknowns. 

When I started chemo- the decision was hit hard, keep the new drugs in the back pocket. I got 18 months out of one of the hard hitters. I had a complete response, although there were shadows of healing(keeping me just a shade away from NED) the chemo worked at shrinking the mets spots.   Radiation was the best option for the tumors in my brain. There were 3, a bigger one in my cerebellum and 2 in my frontal lobe. The little ones- pretty much disappeared. The bigger one required more radiation and well- didn't like it so much- leading to a bunch of swelling and dead tissue and this year's brain surgery. 

After radiation in 2015, I started Kadcyla- which is immunotherapy with chemo attached to it. It is much more targeted than the first chemos. Think sniper versus grenade.  Prior to starting Kadcyla- I had Progression of Disease - meaning some of the spots I had were waking up AND there were new spots. Cancer is graded on severity and staged. I'm Stage IV since 2013. Probably sooner- we just didn't know.   When I first started chemo- Phillip googled shit. He came to me with a look of terror. What is Stage V? There is no stage V. But again, I had a great response to Kadcyla- shrinking the new spots in my leg bones, hip bones, shoulder bones, adrenal gland and some of the old spots that woke up. The problem was we now had multiple organ systems being attacked. Brain, lungs, bones, adrenal. That is why we scan- it's a dance- catch it early to stay in the lead. 

I also take something called Denosumab(Xgeva) it's a shot- immunotherapy that helps my bones hold on to calcium. When the cancer gets into bones- they get weak- not only is it painful, they are prone to breaking. The Xgeva helps keep them stronger and hopefully prevent fractures. Older people also can take this- usually once or twice a year. I've had a few lifetime's worth of it. We started at every 3 weeks and last year went to every 6 ,weeks after research showed less often dosing did not affect time to progression or see more breaks. 

I finally put on my big girl chemo pants and told Phil we should get an early start in hopes of getting out of there and helping kids with after school stuff. Well I rolled over, he was sleeping, he rolled over, I was sleeping- we ended up "sleeping in". Chemo was packed and we waited 2 hours. The way the blood draw site kept bleeding, did not bode well for the extra week off increasing my platelets. When we finally got back to the bay, my nurse(mid care of a much sicker chemosabe) says- I need to talk to you as she runs back and forth! Well that's not good. 

After discussion and reflection, my team does not like the 2 spots and recommends radiation. You know my gut reaction is NOOOOOOOO. But I take a deep breath and listen. She asks me the standard questions- any fever? no, aches? the usual nothing new Cough? nah(as I am surrounded by people hacking up lungs- my offspring included). My onc wanders over. She makes her case. She wants me to think about it. What about the Li-Fraumeni- remember the angry brain spot? Yes, that is a concern, but broken pelvis and spine and spreading cancer are a circling shark. Well GDMFCSSOB. Since the rest of the areas are quiet and responding to Kadcyla- the best option to treat the bone spots is radiation. Shit the ball is rolling. 

My nurse is on the phone with radiation oncology trying to get me an appointment to talk with the rad onc. Yep she's asymptomatic, she's one of our weird ones. Flashback to brain decisions. Ugh. radiation. Ugh. Cancer sucks. Ugh. It could be worse. Ugh. She tells us to think on it, rad onc will call. Ball moving faster. My phone rings- it's the nurse at school- Kiera isn't feeling well- crap- she has to sign herself out- who knows how long we will be. 

SO I finish up chemo, make it to the car and have my meltdown. Phil says- you don't want to do radiation. You don't have to.     I wish it were that simple.  I kinda like this living thing. Even though it's hard and emotional.  I mean the kids- they fight like crazy- we are all still trying to process the last round.  Ugh I don't want to tell them- Kiera is asleep on the couch when we get home. Phil changes and is back out the door to get Bella- The tears keep falling. We promised the kids we wouldn't hide stuff from them- mostly because I have shit for a poker face. I make Kiera and I some tea. I tell her, she hugs me- I say eww your sick, she laughs. Lily gets home. She is also a snotty coughing mess. She struggles enough on chemo weeks. She and Kiera have an audition. Telling Kiera ironically would help her focus- I can't tell Lily yet, it would completely throw her off. It's bad enough both have to audition sick. Next time I turn around, Kiera is laying by the front door asleep with Dobby. This fucking sucks. But it could be worse. 

When they leave, I tell Phillip who is just getting back from work. his shoulders sag. This fucking sucks. But it could be worse. I tell Lily the next afternoon. Which means she will have some physical manifestation in a day or two(cue finger "contusion") Days pass, I can't remember if I told Bella. She wants to make cookies. I sit and talk with her while her hands are busy. At first tears. Then the red headed anger- why can't we have a Christmas without medical CRAP!  I apologize and promise to try and plan scans better. She says it's ok, all she wants for Christmas is for us to be together and for me to get better. 

So I have pretty much checked out- focusing on the basics and just trying to enjoy the season and keep stress low. Not in a Grinchy way- just a survival do what's important way. Just another dose of perspective. I baked cookies because I wanted to. I got some Christmas cards out, because I love cards. I'm looking forward to Lily's piano recital and Kiera and Bella's holiday Nutcracker show. We meet with radiation oncology on Tuesday next week- Phil has a couple days off around Christmas- I'd really love to take those days and have some fun family time. We will come up with a plan and go from there. So as things go- pretty stable-ish in Mallory land.