People keep asking me if I feel guilty. It brings tears to my eyes every time. “I do a little bit,” is almost always my response, even after one doctor tells me that “I shouldn’t feel guilty about anything.” If only it were that easy.
I know it must be heart-wrenching to watch this go on, especially for my husband, parents, brother + SIL, and closest friends and family. Everybody must feel so helpless and this is my guess because it’s happening to me, and I feel so helpless.
I just spent 3 days in the hospital. I bet you didn’t know that they’d admit you to to the hospital for something like restless leg syndrome (RLS), but if it’s uncomfortable enough that you’re sobbing in your PA’s office, they just may. Did I want to be admitted? Of course not. But did I feel like I could go home and continue trying to manage it on my own? No way.
The RLS made me feel like I was going out of my mind, like an uncontrollable itch that I just couldn’t scratch. I’d had trouble sleeping for the past week and my eyes were popping open at 3am every single night. Out of my mind, I couldn’t go back to sleep and I felt like I had to stretch my legs out every few seconds just to get any relief. I started crying all the time. Between the lack of sleep and the uncomfortable legs, I started to feel like I was having trouble coping, and I was unable to function much even during the day, as my RLS never took a break (I’ve found out the hard way that you don’t just feel it always at night).
Three days in the hospital proved to be important and irritating all at once (going stir-crazy in my room for days), but I may never have had better care than I did this time around at Mass General Hospital. Everybody worked together– no politics or egos involved that I saw– including neurology, psychiatry, oncology, and the attending physicians. The nurses were so sweet, all with kind eyes and souls like an angel, with a “Can I get you anything?” every single time they’d leave my room. I wanted to cry they were so warm and caring. There were so many things to consider; low sodium so overnight IV, keeping my blood sugar stable, what medications would metabolize OK in my liver due to the melanoma, how much and how often to give these medications, what neurology thought could be causing the RLS (we still don’t know), the anxiety that this whole thing provoked, the depression from not having much of a life since my first CERT procedure back in April, my stomach hurting after I eat, the list went on and on. If it wasn’t a finger-prick for blood sugar than it was an IV; if it wasn’t an IV than it was blood taken, if it wasn’t blood taken it was vitals, if it wasn’t vitals it was trying out more meds, and if it wasn’t trying out more meds it was a CAT Scan. Thankfully each and every single doctor that came to see me consulted with all of the other departments and offered me the greatest compassionate care that I have probably ever received (the oncologist told me that I have been through enough and that I deserve “only the very best care”).
Last night was the first time in a week that my eyes didn’t pop open at 3am and that I didn’t have to take any kind of a medication to go back to sleep. Hooray! My body is still weak and fatigued (it feels like my muscles have atrophied) but I know that somehow, I’ll get my strength back. (This is my positive self saying this, but I am scared that my body is “broken” and that I may never find my strength again).
As for now, I’m working on tweaking the medications with my doctors and creating a new sleep time routine (last night I turned off the TV at 8pm, worked on my “adult” coloring book, meditated, and didn’t look at any screens until I fell asleep at about 9:30pm). Caffeine is out for now, so decaf will have to do. My RLS is not gone completely and they warn me that there could be bumps in the road; it’s something that they still don’t know that much about, so it could flare up again. All of the medications make me tired and give me stomach aches, so there is still a lot of chronic discomfort that I am dealing with. But, I am working on it.
I thought that maybe this would be the “Summer of Sam,” but it’s already July 2nd and so far, I haven’t had much summer. I long for cookouts and beach time, swimming and ice cream, seeing friends for iced coffee and pedicures, and yet, I have no energy to do any of this quite yet (at least as I write this). In fact, it takes everything that I have to put words onto this blog page, and yet, it is the best catharsis that I know.