In this blog post...
- Head Shave Part I ✔️
- Aimless ant
- Prisoner in My Own Body
This blog post has taken me forever. Mostly because I've been in so much pain the last couple of days... but also just really tired. Dun dun dun. It's a lot of realities hitting at once. But hey, not all bad ones.
Head Shave Part I ✔️
Like this. I wasn't sure what I wanted to do with my head but I knew I needed movement. Move, girl. Just to do something. So Tim helped connect me with his hair guy to set up the fastest appointment available. My friend Elaine picked up me and my parents, taking us to the Japantown hair salon on a rainy January night and making the trip over much more enjoyable. Check out the shenanigans ;p
Like I said... I wasn't set on what exactly I wanted to do. I think "PINK MOHAWK" got the most votes but 1. I realized I'm not ready to have short hair yet and 2. I was warned not to dye my hair because of the chemicals. Elaine and I talked about getting "Cassie" hair. (She's a singer who shaved her head on one side years ago.) That's essentially what ended up happening.
Elaine helped me record a Facebook Live Video during the cut. It was my first time doing something like this so it was a bit of an experiment. Thanks to all who tuned in! It was great to feel like I had an entire group of people with me as I was figuring all this out. I saw names I didn't think would pop up from people I haven't seen/spoken to in a long time. I am grateful for the interest, even if it's silent ;).
It's weird putting my hand over that part of my head, but I realize that this is small beans compared to running my fingers along a completely bald surface. I actually didn't cry or anything during the haircut - nothing to cry over - but I almost teared up thinking about how it would be if Ricky the hair guy was using razors to shave my head. It's just around the corner and I have to ready myself for that. It's the actual dealio.
I have been shuttling to and from different UCSF campuses and dr's offices almost every day. The good news to report: my IVF process is going well. Hearing that part helps to offset the terrible side effects for sure. (Ladies + gents who need to know more, feel free to ask!)
The part I like a lot less is feeling like I always have somewhere else to be but not knowing how useful the appointment actually is. I met up with my oncologist again who helped to set the chemo date: 1/13, which by the way is a Friday. Guess it's good I'm not too superstitious lol. She realized that perhaps I could NOT get a port installed in my chest (the Ironman thing I referred to before) because my tumors might be impacting the usual vein(s) needed for that. So... she said I'd have to get a PICC line put in for the first cycle of chemo before trying the port.
I went to yet another UCSF campus to get that minor surgery (think of the PICC as a super invasive IV line) but that doctor asked when my actual treatment would be. When she learned it was more than a week away, she said let's reschedule so that you don't have to have this thing inside of you, making life more of a hassle... plus... it requires someone to flush it out and clean the lines to ensure the prevention of infection.
So that is now scheduled for the day before my chemo. I'm glad i have a week without the hassle of the PICC line but I do find it harder to absorb the downs in the roller coaster. A port would be best. Now I have to go through an extra procedure where they stick me with needles and shove crap into me. They feel like bigger hits. I'm not the bright-eyed Harry Potter who first arrived at Hogwarts. It's like Harry in Prisoner of Azkaban when the dementors are sucking the life out of the poor kid. Not enough strength to ward off those downs. Where's my damn Patronus when I need it?!
Prisoner in My Own Body.
Speaking of prisoner... I've really had to adjust my tolerance for pain and for insomnia. I was told the steroids would cause me to have problems sleeping but I never really found any troubles there until the last few nights. I think the IVF drugs are really "working" and it's causing stomach aches, back aches, head aches which all meld nicely into a formula for no sleep. I wake up in the middle of the night constantly, struggling to find the right way to lie down or sit up, I make slight adjustments, try to breathe in and out to relax my body and my mind...
None of it seems to stick. I "wake up" in the mornings (after already being up all night) feeling extremely groggy, swollen and achy. I feel like I'm trapped in this damn body. I get why people who are older and have more physical problems can be cranky haha. It's this constant plaguing of WHAT IS WRONG WITH ME.
It was especially bad after I gave myself two shots last night. I decided to document the not-so-great moment...
The best way to combat all this? Surround yourself with positive people. Lucky for me, I have a bunch of those ;).
And if you face any negativity, just get yourself away from it all. Stat.
I was reading some of the later comments on The Refract Facebook page from the live video post and saw some random woman had criticized the use of water + shampoo during my cut (?) and also questioned me not donating the hair. (I've done Locks of Love before. I know the rules, the mission, and plan on donating again.) It's okay to ask questions or make constructively critical comments... but I wondered why this stranger was speaking in such a negative tone when this has not been easy by any stretch of the imagination. Why would someone want to bring down someone in my shoes? Even slightly?
So I had to just push myself off the site and forget about it. I'll be honest, it bothered me for a good hour or so. The feeling of resentment snuck under my skin like determined leeches and would not stop sucking the life out of me. I don't remember what finally got me to stop dwelling on the comments (it was probably the physical aches ha) but I did stop. I think ultimately I just get turned off of anything that resembles self-pity.
So I'm practicing a lot of the...get up and go on, Steph. No point in dwelling, not if it's negative in nature. Nobody got time for that!
The true rockstars in all of this: MY DMSF. They take such good care of me... it's insane. How can I not win with this crew in my corner? All day every day they clean, cook, organize, shop, drive, rally... and THAT is what inspires me to do and feel better. I'm going to leave with shots from my home: of the home-cooked meals and all the love/laughter that fills the place.
This is what heals me.