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What now? This isn’t the first time I’ve heard these words. What now?
I’m tired of hearing them.
I’m tired of feeling weak.
I’m tired of being sick.
I’m tired of hurting.
I’m tired of being a pincushion for the latest set of nursing students or prospective doctors.
I’m tired of the scans, the tests, and the hospitals.
I’m tired of all the What nows.
I’m over it.
Dr. Olson looks at me, not Mom. She gives me unspoken words of support. I understand now the reason behind her presence here. She knows I trust her and value her opinion. She knows my family can get overly emotional and sometimes miss valuable information. She’s my second set of ears.
Dr. James takes a deep breath. “Aundrea, I’m going to be very honest with you. Eventually, down the road, you may need surgery on your heart. How far? I can’t tell you. A year; maybe longer. My job right now is to control your symptoms with medication. ”
I hear my mom’s soft cries and reach over, taking her hand in mine, trying to give her some comfort. It’s strange how I always seem to be the one to comfort my family.
“I’m sorry. This is … just a lot to take in, so forgive me if my questions come out scattered or incoherent. Is this something that you fix with just medication or surgery, and then everything is okay?” I question.
The doctor continues, “This disease is most often not curable. The way it’s treated is symptomatic. We look at what you’re experiencing and the results of the tests on your heart. Based on the tests we’ve done so far on you, your heart is in early stages of cardiomyopathy. You will need to be on heart medication for the rest of your life. ”
“Okay, now I’m really confused,” I say. “Why are you mentioning surgery if this isn’t curable?”
“Because over time the heart can become overly large, putting a lot of strain on your body as well as weakening the muscle. Your heart valves can thicken and become narrow, making it extremely difficult to pump blood through your body. Our goal with medication is to keep that from progressing. Surgery won’t cure it, but it will reduce the risks of heart failure. A small percentage of patients are treated successfully with medication alone, and are eventually able to go off the meds while being monitored very closely. I will do everything I can to try and get you to that point. ”
My mom doesn’t speak; she just continues to cry softly in her chair. I squeeze her hand, letting her know everything is okay.
I thought I was done with it all. Chemo is done. My transplant is over. My markers are low, and my blood counts are great. I thought the surgeries, medication, and tests were going to be over with. I want them to be over with.
I need to be done with it all.
Nothing is ever as it seems.
“What happens if the medication doesn’t work?”
“Your heart will become weaker, potentially causing you to go into cardiac arrest. But you will be closely monitored to prevent it from getting to that point. ”
My mom’s cries become a little louder.
“If we have to do surgery, where does that leave me?” So many questions are bouncing around inside my head that I’m not even sure I am making any sense or getting them all out.
“I simply can’t answer that right now. There is no way of knowing the condition of your heart in the future. ”
Not letting him add more, I interrupt raising my voice a little, “Hypothetically speaking, what happens? What have you seen?”
“Every patient is different. There is no way of knowing how your heart will tolerate the medication. You may be okay with just that, or, over time your heart may become too weak, necessitating that I go in and open the valves back up, or place a stent. If I can’t repair that damage, then, based on what I see at that time, we’ll have to look into other options. Worst case scenario, you go into cardiac arrest, and we have to look into bypass surgery. At this point, I can’t tell you what will happen, or even if you’ll ever need surgery. ”
Cardiac arrest.
I have gone through hell and back. I have survived cancer—twice. But I can’t survive this.
“This won’t be easy, Aundrea. ”
When has life ever been easy?
“Will the medication be enough? I don’t know. I hope so. My job right now is to keep your heart from going into failure. ”
Failure. “Failure?”
“Aundrea, with dilated cardiomyopathy, you are at a high risk of going into heart failure, which is why it’s very important we start you on medication and monitor you very closely to make sure it’s working properly. ”
“Fucking great,” I mumble.
“Aundrea!” my mother yells from the chair next to me.
“I know this is a lot to take in, Aundrea, but Dr. James isn’t telling you you’re going to go into heart failure. He’s simply giving you all the worst case scenarios. Maybe we should all take a moment to breathe,” Dr. Olson offers.
“I think that is—”
“No. I don’t want a break. I just want to hear this right now. ” I speak over my mom. “I’m tired of breaks. What happens if—when—I go into heart failure? Are you saying I may have a heart attack?”
“Not necessarily, no. I’m saying that eventually your heart may start working overtime, causing major stress on it, as well as your body. Which, in turn, causes your heart to slowly, over time, shut down. What happens then? Well, you may need a permanent device implanted in your heart, like a pacemaker or, as I said a minute ago, you might need bypass surgery. Yes, you are at risk of having a heart attack, but that is what we are trying to prevent. We are trying to prevent all of this. ”
I swear under my breath. I can handle being told I have cancer. I’ve been told it before and I know how to deal with it. I’ve beaten it before; I can do it again. I was prepared for that news today. But this? This is something I never imagined.
“I need time to process all of this. ” I start to stand.
“Excuse me?” Dr. James asks.
“I can’t sit here. I was prepared to be told my cancer was back. Not this. I can’t think clearly. I need to get out of here. I’m sorry. ”
“Aundrea, I think it’s important that you sit back down and hear everything Dr. James has to say. ”
“Aundrea, you said you didn’t want a break. Let’s discuss this, okay?” my mom says, pulling on my hand to get me to sit back down
Did I not make myself clear? “I’m entitled to change my mind! I am tired of people telling me what to do and where to go. ”
I have so many emotions running through me that I can’t even think straight.
Being pissed sounds so much better than crying.
“Aundrea,” Dr. Olson says in a soothing voice, “I know this is hard to take in right now, but if—”
“No!” I snap. “This conversation is over. ”
“Aundrea!” My mom’s voice is loud and firm. “What has gotten into you? Sit down. ” Her eyes are red and swollen. Her hands are shaking as she brings a crumpled tissue up to wipe the tears that keep falling down her cheeks.
I bend down so that I’m kneeling directly in front of her. “Mom, I’m so tired of all this. So damn tired. How much more can I take? How much more can my body take? I don’t think I—or my body—can possibly take any more. I don’t want to spend what time I do have left in hospitals or running from clinic to clinic doing tests. Having to worry about taking a pill every day is already enough to think about. I’m tired of feeling numb. I just want to be done with it all. I can’t do it anymore. My body can’t do it anymore. ”
I didn’t expect the word “done” to come out of my mouth, but now that I have I feel liberated.
I’m done. I’m done. I’m done.
Before my mom can catch her breath between sobs, Dr. James cuts in softly, “Aundrea, if you do nothing your heart will eventually slow down until it is done. I c
an’t guarantee you won’t go into heart failure. But I can guarantee that getting started on medication will prevent you from going into heart failure now. Listen, you’re young. I don’t want to see you in six months discussing a heart transplant. ”
“As opposed to what? Seeing me in three years for it?”
“My medical advice is that we get you on medication. It’s four pills, once daily. You’ve come this far. Don’t give up now. The cancer hasn’t killed you. Don’t let this. ”
Is that what I’m doing? Giving up? I just see it as trying to get all the information. Processing it without anyone pressuring me.
My mom is making choking sounds and she lets out a loud cry of pain. Clutching her hands to her chest, she lowers her head between her legs, trying to control her rapid breathing. I wrap my arms around her, whispering in her ear over and over again that everything will be okay, and rocking us back and forth to comfort her until the tears ease.
She looks up at me and all I see is pain. “Aundrea, you’re our miracle baby. I won’t give you up, and I sure as hell won’t let you give up. ”
“If I’m your miracle child then why is God still trying to take me away from you? Why does he continually find ways to break me? I don’t understand, Mom. Why does he want to take me away?” I whisper.
“Honey, he doesn’t want to take you away. ”
“No? Then what do you call this? I am so mad at Him right now. So mad!” I swallow the lump in my throat before finding my voice again. “He wouldn’t be trying to take my heart, too. ”
Tears slide down my face and I don’t wipe them away. “When is it time for me to live my life? I don’t want to live in fear anymore. I don’t want to come to the doctor afraid of what the next scan will show. I don’t want to be afraid if my medication isn’t working properly. I don’t want to constantly wonder if I’m going to get bad news or good. I just want to live my life in peace. Really live it. I want to be free from all this. ”
Looking up from my position on the floor, I add quietly, “I’m done with this conversation. ” I turn my attention back to my mom, rubbing small circles on her back. My heart clenches for her. Seeing her in pain only causes me to hurt more, but I can’t think in the state of mind I’m in. I need to be away from all the eyes looking at me.
The drive back to my sister’s house is quiet; the keys hanging from the ignition clink against one another with each turn. My mom doesn’t say a word to me the entire drive, and I don’t dare speak to her. My entire body feels numb. My fingers are tingling and my heart is pounding so hard I’m almost certain it’s trying to break free. The lump is still stuck in my throat, and I know that the second I open my mouth to speak I will break down.
I’m in shock. I have come to learn how to fight against cancer, but I don’t know how to fight against the news of knowing that I’ll have to live with a heart condition for the rest of my life. I don’t know what’s worse. Dying of cancer, or dying of a broken heart?