July 16, 2019
Chemo round 9 of 12 started today. And despite that, and one chemo-barf, she's had a really great day! Her vitals are all good. She didn't go to bed until 6am (likely insomnia from chemo+steroid), but she's still been a very happy girl.
OMGOSH the JULIA HORN. IT'S NON-STOP. She clearly just figured out how to vocalize around the trach so she's been making noise aaallll daaaay. The only real word she can say is "No!", but she's making so many noises now! And they're super loud! She's not usually angry or anything, just testing things out. So it's really awesome. Right now I'm on the phone with Reed and it's hard to hear him over all her noise. She's apparently trying to pull her sock off and she's making everyone aware of it. [Update: she got the sock off and is now yanking at her pulse-ox.]
She has become an expert at pointing across her body in the general direction of her iPad and mouthing, "iPadiPadiPadiPad". And if you tell her no she gives a Julia-sized tantrum (now complete with Julia Horn).
She had two GREAT therapy sessions today! OT spent a good 40 minutes with her playing with a new stacking toy. Julia did a good job holding it in her left hand (with assistance) and she really enjoyed stacking and unstacking. The therapist said when Julia WANTS to use the left hand, she's making it happen. So that's great. And Speech came by and played with her tea cups and spoons. No one put a spoon in her mouth, but Julia did it all by herself while imitating everyone =) There was nothing on it, but it's a huge step toward getting her to be OK with things near her mouth again. So a super great day for therapy!
Pic and video tonight are of her OT session =) And a reminder about her weird eye. The tumor (or possibly stroke) seems to have damaged her ability to blink / lower her right eyelid. It's possible this heals in time. But I've seen a lot of people say her LEFT eye looks lazy, because it's more closed. Her left eye is the 'normal' one. If you cover her right eye with your hand while watching the video, her face looks completely normal (you know, minus eyebrows and lashes). So the right lid is just kind of stuck open at the moment, though it does close when she sleeps. ~~~~
After my recent posts have done a phenomenal job highlighting my anxiety, many people have said it sounds like I have PTSD, and asked if I'd consider therapy. The answer is yes (to both), with the right person. But let me tell you a story. (If you'd like to skip a weird story, just jump to the adorable Julia video in the comments <3)
Once I became an adult, and I guess I realized people could die, out of nowhere I developed an irrational fear of flying. "Fear' isn't even a strong enough word. It was so bad I would be waking up at 2am for MONTHS before the flight, obsessively Googling if turbulence could kill me, or what happens when a wing falls off, or if the plane would still fly if all the air disappeared (seriously).
I did talk therapy with several different counselors, I probably own every fear of flying self-help book there is, I paid the online fees for the 'guaranteed to cure' courses. I joined forums. I prayed to God. I tried medication, and tons of alcohol, and sleeping pills (not together). Everything a friend suggested had worked for them, I tried. I know all the statistics; I can repeat the in-flight tips; I could probably fly a plane myself; I could definitely teach a fear of flying course. I "know" everything I need to know. So after completing a popular 3-month online course before a trip to France, I felt super confident in the airport. My anxiety was nowhere to be found and I figured all the effort paid off.
I made it all the way down the jet bridge until I could see the door to the plane, and then the total meltdown happened. It was insane. I was inconsolable. I KNEW that plane was death and I was headed right for it. I think Reed had to drag me onto it. Manny, Megan, and Alicia were all there, though I'm not sure if they knew the extent of the freak out. Though they did see the aftermath of me hiding in the seat with my hoodie pulled up over my face.
And then of course the plane was delayed, so we sat there on the tarmac for a hundred hours while I was in this state of complete terror with nowhere to run. I was staring out the window, and I saw a bird just flapping its wings and going nowhere. I assume it was caught up in the stream from the idling engines, so it just hovered right outside my window.
And I thought... THAT'S what I want. I want a bird. With wings. And a brain. And a desire to not die. That's what I want to be flying on. I would feel safe on a giant bird. A bird who has a reason to be up in the air.
So, no lie, as the plane started to roll down the runway, I convinced myself there was an army of soldiers on horseback chasing us, throwing spears and shooting bows... and I was on the back of a dragon. And the dragon needed to fly for us to survive. So when I felt the plane lift I told myself it was the dragon pushing off, and the rumbling of the engine was it beating its wings, and the steep incline was it quickly escaping, and the sharp banking was it evading arrows. And for the first time in my adult life, I wasn't terrified on a plane. And this was years before the visuals of Game of Thrones were a thing.
So to be clear. Years of self-help books, dozens of hours of therapy, hundreds of dollars in courses, the best anti-anxiety meds available, and every statistic and tip in my pocket... and as an intelligent, fully-functional, adult women, If I were to get on a plane tomorrow, I would convince myself it's a dragon named Scarlet.
I've always had a very overactive imagination (clearly), and this, combined with severe medical anxiety, is what gets in the way when I'm asked to pull out a trach. Because in the 5 seconds it's taken Reed to pick up the trach and get ready to go, I've unwillingly visualized a hundred gory Final-Destination-esque ways that Julia will die. I see myself pulling out the trach, bumping the fluid pole with my elbow causing it to fall over, sending the scissors flying out of the bag and right through her eyeball. And then she dies screaming covered in blood right in front of me.
That's what's going through my head when the three nurses are standing there pressuring me to just do it... that they are "ready if something happens". Really? You're ready for the pterodactyl to bust through that window and snatch the trach out of Reed's hand... because in my mind that's a possibility.
I have normal fears too. I'm afraid of the ocean, but I could be convinced to enjoy a cruise or go boogie-boarding. I don't like heights, but I can be peer-pressured onto a roller coaster. The dark freaks me out, but when my cat went missing, I was combing through my woods at 3am. Because in those situations, when facing normal, "I'd rather not" fears, I can put on my big girl pants and reason my way through it. Statistically I'm not near any sharks. Roller coasters don't just fall off tracks. The ghosts in my woods are likely friendly.
But jokes aside, this is not that kind of fear. The terror I feel when something medical is involved makes me freeze when I need to act. Is this something I can change right now, with everything else going on? With all the trauma, and death, and permanent state of high anxiety? Who knows. I'd be willing to try, but it would have to be with a... very unique therapist. And I don't have time to weed through several dozen to find the one who understands why fantasy can break through a fear that 'proven therapies' and statistics and knowledge cannot.
I appreciate the sentiments of "just do it for your daughter", but that's not always realistic. I do tons of things for my kids that I don't like to do... that's part of being a mom. So I get it. But this is an irrational fear. By definition, something that is not logical or reasonable. I don't like it. I understand it's not normal. I know it's way over the top. I appreciate this is a very small price to pay for her not being dead. But my thoughts on it don't actually matter. It's irrational. Literally putting her life in my hands, while battling crippling anxiety, with the 'knowledge' that she's going to die at any moment... is not something I can just ~will~ myself to handle better "because I need to".
And with my extreme anxiety, all I had to do was SIT on a plane -- imagine if I had to fly it? Would you personally volunteer to be my passenger knowing I'd close my eyes and panic if the alarms started flashing? Would you trust me with your life? I certainly hope not. And now I'm being asked to 'simply' set aside (currently) unmanaged irrational panic and pull out my medically-critical daughter's stable airway, with absolutely no confidence that I can get it back in. Oh, and we have to be careful not to over-extend her fused spine. And not dislocate her stroke-affected limbs. And we'd better not let a stray germ so much as look at the trach, because an infection in her lungs could kill her.
That's why I'm struggling so much.
(For the record, I reminded Reed of the dragon thing and he laughed at me for about 15 minutes.)
Anyway, so yes, with the right therapist I would be open to counseling. I know I have anxiety, and I've accepted I likely have PTSD. Not to mention the grief I promptly stuffed somewhere unreachable in November because "I ain't got time for that".
But listen, I can't sit through one more hour of someone (poorly) trying to describe a 'calming lake breeze'. I don't want to be told to meditate. I don't need mindful breathing exercises. I've been there done that with flying, and it did nothing but convince me these therapists all use the same 1980s textbook.
Feel free to copy and paste this entire post to your counselor and psychologist friends. If they believe they can compete with Scarlet the Dragon, have them get in touch. This doesn't mean I'm giving up (but I am taking a break for my sanity). I just have a lot of hurdles between me and the trach, and only I can see them.
Cute video in comments <3
YouTube: https://youtu.be/tff7G2W_ai4 .
. ********** ~~ Julia Adams ~~ *********** ************* Official Links ************* *************************************
Julia's official pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3