Being the Caregiver

     So, I've had a lot of comments made to me about the last two post and the feelings towards them are a lot like how people tend to feel about me (or at least the people who are brave enough to voice their opinions about me). Some people love it and some people hate it. I've been told "[the blog] is too emotional" "it doesn't make any sense" and I've also been told "I love that I can feel the emotion" "it really shows what you're going through." But it seems the majority of my vocal blog readers seem to feel the same way about the last post "it's more detached than the rest" "there's not enough you in it." So this post is here to fix that. This post is all me and it's everything I've been feeling. It's raw, it's beautifully ugly, and unlike in-person me it's going to tell exactly how I feel.
     WARNING: If you can't handle raw emotion or are unable to understand that more than just the patient is hurt by cancer I strongly encourage you to stop reading now. The same applies if you believe the only things someone struggling should share are the fake rainbows-and-butterflies positivity all the time or "everything is great" statements. Reality check: this is life things go completely wrong and there are times where people feel everything but good and it is completely okay to share those feelings; we are only human and each and everyone of us could use compassion for our fellow man. Okay, on to the emotional sharing.
     My entire life I have been taught to keep my emotions to myself and respond "I'm fine" even when I'm not. But today I'm not fine. Today I broke down crying in my closet because I realized how long it's been since I felt pretty. That is a very not so great feeling. Don't get me wrong, I've been told I am pretty/beautiful recently but being told and actually feeling are two extremely different things. I don't feel well. I can't share this with Mama because she is having a really rough day today and I don't want her to feel bad for something out of her control. Cancer chose her not the other way around and she can't be held responsible for the things it takes away. I can't tell my best friend because she is feeling extremely overwhelmed with work and the turmoil of her life right now. I can't tell my dad because he doesn't handle emotions well at all and it just makes the situation worse. I can't tell my aunt because she's busy and has her own life and issues a thousand miles away. So who do I talk to? The only people left who might be listening, God and my guardian angels. I may not get a response but at least I get the thoughts out. I think it helps at least a little.
     Everyone has put their faith in me that I can take care of Mama and keep life running as smoothly as possible. I'm the caregiver, I make people and things better. Everyday I question if I deserve their faith. I don't feel like I'm making things better. I feel like I'm continuously playing catch-up and I'm losing ground. Mama woke up puking last night and feeling completely awful but decided not to wake me. It's my job to take care of her. Am I doing so poorly at making her feel better she no longer wants my help? Do I make her feel worse? I'm trying, I really am. I'm the caregiver, I keep trying.
     I listen to how everyone feels about what's going on, I'm a good listener that's what a caregiver does. Mama is very upset about not being able to do PR anymore and really scared of the side effects of the next type of chemo. My step dad feels like he's unable to make Mama happy and isn't able to understand what she's going through. My little brother feels helpless and like a burden. My older brother is angry and doesn't know how to deal with any of this. My granny feels responsible for mama having to go through this. My aunts are grieving and hurt but are trying to keep themselves busy. I'm the caregiver, I'm fine.
     Every Saturday I get told how I've made her feel bad. Every Saturday I have quite a few of my flaws thrown back into my face. I take it and say nothing. I take it so no one else gets hurt or says things that will hurt her. It's just the steroids talking, I shouldn't let it affect me. Please be my guest, give every ounce of compassion and energy you have to someone everyday and let them verbally explode on you once a week for three months straight. Then see if you can make eye contact with me when you try to say "it's just the chemo talking, don't take it personally." I'll help you up off your butt where that high horse threw you off. Suck it up, buttercup. We're caregivers, it's what we do.
     "Why do you stay up so late? Why do you get tacos at midnight with your friend?" I have homework. I'm 21 and I'm still in college. I do my homework at night after I've taken care of Mama all day, made dinner, and tried to have a small bit of family time. Mama doesn't go to bed until nine or ten o'clock that's when I start my homework. I get tacos so late with my friend because she works until midnight and that's when we can get together and talk. Tacos and margaritas make the chaos seem less difficult. I'm the caregiver, I'm sleep deprived.
     I'm exhausted to a point I never knew exhaustion could reach. I'm busting my butt just to try and make it through each day just to repeat the process over and over again. I feel like I'm failing at almost every aspect of life, right now. I'm the rock everyone leans on. I get through each day on blind faith. I'm the reassuring statements she needs to hear because she's scared. I'm the positivity that makes her believe everything is going to be okay. I try to make everything better even though I feel like crud everyday. I'm a caregiver, I do the impossible.

TTYS,

Aleena 

Updates and the Secret to Getting Through Life with Cancer

     I know it's been a while since my last post but there has been a lot going on and frankly I've just been too tired and busy to write. We are down to our last Taxal treatment then we have 4 treatments of a harder drug that is given every 2 weeks. From everything the doctors tell us and everything I've read the 2 week treatments are much worse than the ones we've been getting. Great, as if basically having a toddler with pregnancy hormones going through menopause hasn't been fun enough. The past 3 months have been an exhausting roller coaster from hell and with them upping the steroids I fear it is only going to get worse. Mama is not a nice person with steroids in her system. But I will continue to be what I have been; the reassuring caregiver. Let me catch you up on what's happened since my last post, there have been a lot of new discoveries.
     Apparently. there is a rather common side effect to the Taxal treatment called Taxal Rash which is a non-contagious skin reaction that looks a lot like chicken pox and according to mama itches 100x worse, The only "treatment" is a alcohol based foam that takes the edge off the itching but does nothing for the breakouts or redness. That was discovered about a month ago. There is also a more dangerous side effect of the treatment and pain meds which is severe swelling. Discovering this was very scary because Mama's legs swelled up to 3x their normal size after round 8 of chemo and we had to go to the E.R to get checked for blood clots and risk of pulmonary embolism. Luckily all the scans and images came back clear but we did have to add another medication to the regiment to try and reduce the swelling some. Our "happiness" box is having trouble closing now I really hope we don't have to add any more meds. Mama is also now bedridden for the majority of the rest of the treatment because she over did herself and worsened the swelling on our trip to visit family that she requested. She says it was worth it I would strongly disagree. That trip was hard on me I know it had to be awful on her. During the trip I did discover my barely existent brain-to-mouth filter still works. I was really worried my thoughts were just gonna come right out and I was gonna have some very ticked off family members. I did have a few moments where I had to bite my cheek but I was mostly good.
     This past week was my spring break from school but none of it was a break at all. Mama asked me to pull our boat to my Peepaw's so the family can now use it and so she could see everyone. That turned the original 15 hour drive into a 18 hour drive and yes I was the only driver and yes it really did suck...a lot. We left Friday immediately after chemo got there late Saturday morning and started the return trip Wednesday. There was a lot of driving to visit or try and visit with everyone in between too. But it made Mama happy. She got to see the people she wanted to see. After this is all over I would love to have my own personal chauffeur for a year or maybe just drop me off on a small tropical island where I can walk or bike to get everything I need. I have driven somewhere everyday for the past 3 months, I'm tired of driving.
     Then we come to the rest of my life: school, friends, and my non-existent date life. School is going well and I have a great rapport with all of my professors. I will admit my accounting professor has gotten to where she asks "what time were you doing this problem?" when I ask for homework or quiz reviews. I have discovered that sleep deprived doing accounting work at 2am me has waaaay more difficulty than caffeine fueled midday problem solving me. Also, when making exam note cards do not allow sleep deprived reviewing at 3am me to convince you to not write something down because you'll remember it. You won't and you'll be looking at your note card during that exam like it's written in another language you don't know but are still trying to translate. My professor actually made notes on my exam about the looks I was giving my note card, so not funny.
     My friends, thank god for my friends. I am certain all of this would have driven my completely insane by now if it wasn't for them (yes I know it's a short drive). They give me the dose of normalcy I lack from everything else. They don't give me the "I don't know how you do it" or "I'm sorry" that everyone else does. They jump in the car to join us on our late night trips to satisfy Mama's cravings. We still get late night tacos and watch movies. But most importantly they don't act like this is the worst thing in the world and nothing else can be talked about. They treat me like I'm still me not like I'm only the caregiver, or the shrink, or the victim. They remind me I'm still here and that cancer hasn't completely changed everything just most things.
     So for those who ask "how do you do it?" the answer is not simple. I take it day by day. I cry. I laugh. I love on my dog. I hug my friends. I listen to everyone else's problems. I look for something good in what sometimes feels like a sea of bad things. I refuse to give up hope. I get reminded I'm only one person. I make other people feel better. I do what needs to be done. I do it by being who I am. There is no secret of how to get through this you just have to take what comes at you and focus on getting through what ever trial is in front of you at that moment.
     We are almost done with chemo, yay! And now you are up to date on life with cancer so far. We meet with the surgeon tomorrow to update her on our progress and talk more in depth about the mastectomy and it's details and timeline.

TTYS,

Aleena