My facebook is blowing up with people panicking about the goverment shutdown. Literally panicking. Stocking up on food- voicing opinion-complaining up a flipping storm. I get it. I get your angst. It really flipping sucks when a system shuts down. It's frustrating when someone who's supposed to do their job- doesn't. Uncertainty is terrifying. But as a very dear friend on a very different topic told me last week- pull on your fucking big girl panties and buckle up.
I haven't heard anything about the government shutdown. I live in a cocoon. A nice safe cocoon of medicated calm. It makes sense that a couple weeks ago, the bill master and income making half of my life asked that all future expenses go on the charge card for the foreseeable future. I figured it was because he is being cautious and my scans were pending. Perhaps I need to look at the news more.
I can't tell you when this started. It has been a typhoon in a roller coaster in hurricane in a 500 year flood. A couple months ago I felt chest pain. I asked around- all completely normal following the chopping off of one's breast. Nerves come back- the resulting sensation is this burning, lightening firey moment that catches you breath, then passes. Then it pops up again. Not fun- but one can live with it. We got Lily's all clear, finished the kids scans- also clear. I was emotionally exhausted. Then we went on vacation, I had a break in working out- school chaos started, Pinkalicious was in full force- I was exhausted. I felt a little short of breath when I worked out and had a little cough. But we have the air on- I always get allergies and who knows what crap is living in our air vents.
Then one day I get a notice from a fellow mutant. Her cancer is back and angry. Another mutant friend online asked about breast pain. Another mutant in our support group's lung cancer was back. Oh God Damn it the Neon sign hit me. I took a deep breath, followed by a cough- put on my workout clothes and let my husband lead us in a typical workout. Not even half way through I couldn't breathe. Full on panic attack- world crashing around you, sobbing realization. There was something in my lungs. Phil grabs me, my rock, my soulmate, the love of my life for eternity. I know what this means. I have 3 girls and at some point I inhaled all their flipping glitter. My lungs were glitterlicious. WE can fix that. Since my sobs render me incoherent- Phil puts me on the couch and calls my surgical oncology nurse. My old oncologist and I had functional disagreements- we will not be consulting him. She knows that if we are calling- it's not small potatoes. We don't cry wolf. I compose myself. I convince Phil that I am stable, he leaves for work. I am not stable. I call my neighbor and without caller ID- she would not have been able to be over to my house before I could squeak out- please come over. My genetic counselor calls and gets me in faster than a glitter pod can clog your lungs to a different oncologist who will work better for me. I don't even care that I've earned myself that special difficult patient folder. I let Phil know, he clears his schedule. When he gets home I am varying degrees of stable. I know he has to work. We need the fricking healthcare.
The appointment comes and I like the new guy. Not a neophyte, not a geiser, juuuust right. Everyone seemed to expect me on death's door. That is reassuring. My lungs sound great- mets don't sound great he tells me. That's cuz it's glitter- glitter is a silent ninja. Not a word then BAM sparkles.! I point to a lymphnode- feel it. He can't feel it. No try again. Nothing. Oh god damn it- they thought my sarcoma was nothing. I still like him, he gets a chance. He talks about a chest xray. He has been briefed well by my genetic counselor. He is letting me make calls- he is giving me the offering and backing away. I accept. And bloodwork. Accept again. We say our farewells and head to xray. Apparently I have had too much medical community exposure as the tech asks me if I want a gown-I say no. I just have to take my bra off it has metal. Phil reminds me there is a shiny thing on my shirt- oh that will have to go. She goes to get a gown. Can't I just strip down in front of the xray? She looks horrified.Allrighty then I will put the damn gown on sheesh. And I was just trying to get my sexy back as the one boobed bandit. Maybe next crowd.
The next day I am almost stable. I feel stable-ish. The doc gave ativan and ambien. Like I said- second chances are sometimes deserved and rewarded. I convince Phil I am fine- he goes to work. I bet he's not even to the flipping highway yet and I get the call. My Xray is concerning. I don't ask questions- which is really not like me. I hang up. I can't breathe. I can't breathe. Panic is not helping the tumors in my lungs. GDMFCSSOB. I call Phil. He can tell. There are no words. Ever the optimist. It could be TB. Yep. I hope to GOD it's TB. Or a glitter Pod. He tells me to call Monica- he will be home as soon as humanly possible. In Humanly possible- Monica and I manage to clean out the craft drawer. The source of all things glitter. Glitter on ribbons. Glitter in packages. Glitter everywhere. Symbolically cleaning out my chest of crafts. Purging glitter.
We line up appointment, after appointment, after appointment. The fast track is reassuring and terrifying all at the same time. Afterwards we try to put on the glitter facade of normal. The kids know something is up. They know there is something in my lungs. I didn't tell them it was glitter. There is absolutely no friggin way to avoid glitter in our world. I don't want them to worry, even though I can see the worry, they are acting out in worry and I know they are worried. They have spent far too much time in their beautiful little lives worrying about glitter already.
The Chief of Pulmonology wants to see me asap. Good, yet terrifying. My mother's mommy radar goes off and I get very worried calls. I do what any good daughter does. I downplay it. She is not fooled. I don't even have to tell her it might be glitter. She's seen my house- she knows it's everywhere. I tell a few select people. I learn that each in turn is battling their own cancer. Fuck- I'm sticking with my mutants- at least I KNOW they all fricking have cancer and at least there I fit in. They are amazing and wonderful and without this select group of women- I would be a puddle of ativan riddled glittery goo in a corner. They help me laugh, they help me be strong and they tell me to put my fricking glittery big girl panties back on.
I gear up for PET/CT and MRI which adds to the pandora's box of nightmares in my head. I deal with multiple anesthesiologists and nurses questioning if I really need sedation for these scans. As I sit sobbing in the waiting room- Those of you who know me know- I DONT cry publicly - except for funerals and now apparently PET/Cts. After I composed myself- I simply said- I have four kids- I know there is something in my lungs and although yes I should be able to GET THROUGH this- I KNOW what these scans will show and it means in there is a very real chance my kids will lose their mom sooner than they should. Things went a little smoother after that. Right up until Phil and I sat in the Pulmonologist's office and got to see the glittery tree that are my lungs. Perfect little round orbs of glitter. A few spots in various bones. So the testing goes on- we have metastasis- but is it breast or sarcoma?
Today was my biopsy. EBUS. Look it up if you want. Long-short- an endoscopic tube down throat into lungs with ultrasound guided needle punched into lung to grab samples. A friend of mine(non mutant) looked it up on her own and recommended I get a ride home. This was uproariously funny to me. They won't even let you have the procedure unless you have an escort( I made sure mine was covered in glitter- bonk chicka wow wow). The pulm nurse was paging anesthesia regularly after about a half an hour of my snark. In all fairness- I told him which vein to use for the IV and he didn't and blew the wonky vein. And so really afterwards he was asking for it when he asked me if I had any pain -so I calmly let him know- well yeah- this one spot riiiight here- and pointed to said blow out. But oh the anesthesia was good. And when I woke up- I saw one of my favorite nurses in the whole world and in a drugged haze yelled her name. Hopefully it wasn't as loud as it banged around in my head and I feel even worse that when she cheerily asked me what I was doing there- I nonchalantly mentioned oh you know- metastatic cancer. Ms. B - you have always been an angel and popped up when I needed to see a friendly face the most. Thank you!
Here's what we know. My system of tumor suppressing is shutting down. We either have to stop the glittery resources from overspending or we got to slow it down. There is no making it go away. We have entered the portion of LIVING with Cancer. So I'm sorry if you think the Government shutdown is the worst thing that could possibly happen right now. I tend to disagree. I don't have time to worry if I will be able to get non essential care. I just have to worry about hugging my kids tighter- finding a way to visually poof as much glitter out of my lungs as humanly possible and gear up for a fight. Those who care will carry on despite whether they get a paycheck or not and those who don't will realize that the exact things money can't buy are they things worth living FOR. Glitter On Friends.
Messages for the Mallorys
8 years ago