Home Sweet Home

Mind

My first night back was good. I was able to get about 3 hours of sleep and felt a little bit better in the morning. Sleep is something I am still chasing, good sleep at least. My body has been getting rest but my mind has not. I think that’s been my biggest problem besides the mental anxiety. Day by day it’s getting a lot better. Mornings have always been hard, but each day at home has been dragging me out. This gives me hope that I can lead a normal life between now and the bone marrow transplant. I have tapered off my anti-anxiety meds at night. Today I tried to taper off in the morning but I think that one will take time. It’s always fun to see if you’ll get anxious about your anxiety meds. I can’t tell if I’m anxious about the medication or if it is the medication tapering affecting me. Either way, I think it’s something that will come with time, I just need a restful sleep. My medication schedule is A LOT better than I thought it was going to be. It’s manageable and I don’t have to get up every 6 hours to stab myself and pill cut 1,000 pills. It’s good. My parents have been through it with me every step of the way and it has made me feel so safe and sound. Because even though I hated being in the hospital, I had developed a routine there and maintained a safe space, almost like Stockholm syndrome in a way. I mean what’s not to like, the nurses bring you your meds on time, and hand them to you? I can order food and it will be hand-delivered to me and free water service. If I had any problems someone would be there to help fix said problem. My favorite thing was being able to get Zofran through my IV and have my nausea taken away by the second. The pain was more prominent at the beginning of my recent stay and being able to have someone just push something into your bloodstream and the pain would stop is well… addicting. Thankfully I am horrified of everything that comes with pain meds and addiction so no worries there y’all, all I’m saying is it’s nice to know that if I had any problems they would be fixed. So going home was scary, but my parents almost immediately made me feel supported, safe, and sound. I know it’s hard on them, basically having a toddler again. I know they don’t want me to “burden myself” with their feelings, but I know it’s hard. I want them to know that I know, that their effort and love don’t go unnoticed, and that their support is getting me by each day. I have never felt so grateful to have a family like mine.

( My new medications woot !woot!)

Body

Weight. Something all females from a young age are always hyper-aware of and fixate on for the rest of their lives. Looking back on it, I wish I appreciated my body more. Not worried about being so skinny when I was already skinny. The in-and-out hospital stays have skewed me all around the place in terms of weight and strength. I usually weigh around 125 lbs and have pretty strong legs. My years of soccer have lent me the great thighs I used to have and they were probably the only thing that on my body I was comfortable with. My weight in the hospital had started from 125 down to 113, the next around the same difference, and the third had me stuffed full of fluids and medicines which led me to be around 135. This last visit wreaked havoc on my body. Whether it was my normal levels of labs or my body trying to recuperate, my body is a bag of bones. Getting up to do walks was about the only physical activity that the hospital granted to me during all the stays. It became a part of my routine and goals to do walks every day. Somehow instead of getting better through the visits, the walks and even walking, in general, got harder. I was in such a mind haze and full of medication all the time, I never thought to look in the mirror. To analyze what had changed in my body. I thankfully had reached a point in my life where I was ( before the hospitalization ) genuinely happy with my body. This is something I have always struggled with so reaching that point was monumental, only to lose it within months of my 20 years. So when I went to look at myself in the mirror it was … hard. I had lost ALL muscle and strength without even knowing it. The reason the walks were harder? Because I was going to have to relearn to walk. The reason my heart rate would skyrocket from 90-175 whenever I stood up? Because my body was just bones. When I went home last time It was more about getting the soreness out of my body. This time I was almost unable to get up the stairs to my room, a devastating feeling that made me cry because I just felt so weak. The infusions I have been getting also render me fatigued, nauseous, weird appetite, etc. So that mixed with the body pain and soreness of simply living, walking and breathing is a killer combo. But somehow I am still making it. It will take time and effort but I want my body back and I am going to do whatever it takes to get it. I now weigh 106 lbs but my body is a wonderful machine that will grow and transform as I heal and hopefully, I can get back to old Sydney.

( Left leg is sitting, right is when raised up, ignore my old lady depends, they were my go to outfit in the hospital )

Spirit

I cut my hair. Not in a crazy mental panic crying haze as you see in the movies. I had been planning this since before my last hospital stay. When I was getting more intense chemotherapy they warned me about hair thinning and loss. I didn’t mind honestly, I know my hair would grow back and hey maybe it was time for a new look. Not to mention my problems with heat would be solved if I didn’t have a whole wig factory on my head. My hair was indeed thinning and was now a weird brittle texture. I had cut it short ( to my shoulders ) a couple of summers back and liked the look so it was a new summertime special. My hair has always been special to me but not in an ” I mustn’t touch it or dye it ” way but it’s a part of who I am. I was originally going to set up an appointment but considering I tried to do that last time and I didn’t have enough time to make one because I landed in the ER, I made the executive decision to cut my hair. It was good for my spirit to control something for once in these godforsaken months. To choose willingly to do something to my own body. Did I mess up some areas? Honestly not too bad, but even so, they were the mistakes that I chose to do. It’s almost freeing in a way. So yeah, maybe it was a crazy mental thing, but a good one.

( My raccoons’ nest of hair )

Infusion playlist?

I don’t know if anyone is actually going to respond but I am doing chemotherapy infusions every Monday and Thursday and it’s a long, timely process. I have excellent new headphones that allow me to listen to music a lot better than my tiny Airpods ever did. I finally have time to actually enjoy and listen to things. So feel free to comment podcasts, audiobooks, or songs that you think I would enjoy, could ruminate on or even write about. Please don’t send anything pertaining religion or politics thank you 🙂