the truth is out there
A lot of people ask how I feel now — friends, family, the many medical professionals I see on a daily basis. Most of the time I say fine. Or that I’m OK. I might even say I feel good, on better days. But that doesn’t really cover it.
The truth is, I don’t really know how to answer that question. I don’t want to worry friends and family by telling them exactly how I feel, which is like shit, most of the time. Or, if I am completely honest about how I’m feeling, I immediately want to walk it back.
And when my doctors ask, do they want to know how I feel in comparison to the norm? How I felt before all of this started? Because then the answer is: BAD. Or do they want to know how I feel in comparison to how I SHOULD be feeling right now? Like, they know I don’t feel good, they are regularly injecting and shooting me up with poison. How detailed do they want me to be about how bad I feel? How much information is enough? And at what point is it too much information, and will they think I’m being a baby?
I also find myself sugarcoating how I feel because I could feel a lot worse, right? Like, I could be getting chemo every week, and that would make me feel terrible, so in reality, I probably don’t feel THAT bad, right? There are others that I see, while I’m waiting for an appointment or for treatment, that have it so much worse than me. So do I have any right to complain that much, when things could be so much worse?
However, in the interest of honesty, maybe just this once, here is what I feel like, most days:
Tired: I’m tired when I wake up, no matter how long I slept. I have enough energy to get up and around and go for walks and to the doctor, but I lose all energy by the late afternoon/evening and become a couch blob for most of the night.
Bruised: My arms are covered in bruises from getting blood drawn, chemo and fluid infusions, and IV placement. Mostly because it takes an average of 2-3 pokes before they finally find a good vein. (My veins are bitches.)
Uncomfortable: My neck and jaw are still swollen, both from surgery and from radiation, likely due to lymphedema, which is caused by removing lymph nodes for cancer treatment. I’ve lost mobility in my neck and, despite the PT exercises I do every day, sometimes it feels like my neck is made of actual stone and moving it would be impossible (but it’s not).
Freaked out: The chemo I’m being given should not cause all of my hair to fall out. But the radiation? It can cause some hair loss in the spots the radiation is hitting (for me, the back of my head, close to my hairline). I was fine for the first few weeks, but now, any time I brush my hair or take out a ponytail or wash my hair? I’m just...shedding...so much. The last time I washed my hair was the freakiest. Every time I pulled my hands away from my head, they were just covered in strands of my hair. I don’t think you can really tell by looking at me, but it’s really alarming to be pulling out so much hair at one time.
In pain: I still have to cover the site where my trach was, until it’s fully healed. The tape they initially used to cover the dressing caused a reaction with my skin, so that site is still painful. But mostly it’s my mouth. The radiation causes what looks like a sunburn on your skin where it hits, so you can imagine what that might feel like in your mouth. It also causes blisters in your mouth, so I’m on a steady diet of Tylenol and oxy, for when it gets really bad.
Worried: I’ll have a scan of some sort at the end of all of this to make sure no areas of cancer light up. I’ll have these regularly, I believe, for a couple of years. I’m worried that I’ll go through all of this and there will be a recurrence and I’d really, really like to never go through this again. I’m also worried about going back to work. How long will it take me to get all of my energy back? Will I be able to keep up? Will I be able to speak normally by then? So many unknowns (I don’t do well with those).
Cranky: I feel bad almost immediately after, but I do find myself getting...annoyed (?) at people who are just trying to help, or people who respond to my “I feel like shit, this sucks,” comments with overwhelming positivity. I know all the positive things at this point. I can repeat them to myself all day long, and sometimes it helps. But mostly, in those situations, I want people to say something like, “You’re right, this sucks.”
Emotional: I’m sure it’s a side effect of the months of stress, both physically and mentally, but this week, I’m finding my emotions to be very close to the surface. I mean, that isn’t exactly unusual, but I feel like I could lose it completely, just break down and cry hysterically, at the smallest things lately. I had a routine doctor appointment on Monday, and he asked all the normal questions about how I’m doing physically, but then he asked, “And how are your spirits holding up?” I don’t remember the last time a doctor asked me about that, other than at the very beginning when a nurse went down a form and asked if I was feeling suicidal (no). I found myself unable to speak for a moment and I could tell I was on the verge of losing it in front of this kind man, so I just shrugged. I think he could tell I was close to the edge, so he just patted my shoulder and said, “I know, this is a lot.”
All that being said...on the whole, I really do feel OK. I’m more fatigued than normal this week because of the chemo, but I can perform somewhat normal duties. I’m able to walk myself to all of my appointments. I can shower on my own. I can go on weird duck excursions, even if they’re shorter than they used to be. I feel gross and weird and...wrong...but I feel OK. And that’s the truth.