We’re STILL not Ready for This

It’s like leaving a newborn. That’s how people have tried to explain my anxiety of leaving my mom even for a couple minutes. They tell me it’s good for me to take a break.

I’m by her side every day, all day. I help her go to the bathroom, wash up, feed her when she wants to eat, hold her drink when she’s thirsty, put and take off blankets when she’s cold or warm. I manage her medication and set alarms to remind me when she’s due for the next dose. I coherse her into taking a pill she doesn’t want to take and I handle the attitude when she didn’t enjoy taking it. 

I took a leave of absence from work and day in and day out, I spend my time with my mom. I’m tired. I’m tired all the time. My anxiety is at an all time high and I’ve been experiencing panic attacks daily. Sometimes I feel so exhausted that I wonder how I’m going to take care of her. 

But we have support. We have help. And I can’t help but feel guilty for talking about myself and how I’m tired or exhausted; because it’s nothing even close to what she’s going through. 

She can barely keep her eyes open. She’s been nausea lately and has been dry heaving – like her other symptoms weren’t enough; the cancer now wants to add another symptom to the mix. She’s restless and agitated. She’s clammy and cold. She’s swollen and seeping. She doesn’t eat and barely drinks. The cancer is consuming her even more than before. Her condition changes not daily; but hourly. 

And, we’re still not ready for all of this.

They tell us to start thinking about what she wants, what we want after this is over. And I can’t help but feel that talking about that is wishing her away while she’s still here with us. 

She still tells me she loves me. She still gets snappy with me. She still looks at me. 

But, getting everything in order is part of the process. It’s supposed to help us. We’re supposed to make decisions while we are in a good frame of mind – whatever that means. I can’t remember the last time I was in “a good frame of mind.” I feel like a robot and I feel numb. 

I rarely show emotion, but when I do, it pours out of me uncontrollably. 

I want my mom here. I don’t want her to leave us, but some nights I ask God to just take the pain away. Take the cancer away from her. Make her healthy.

And people ask me, how do you handle this? Do you have hope that pulls you through? My answer, I’m not hopeful – I know the outcome and being hopeful is silly. There is no miracle and even if there was, who’s to say this won’t happen to us again. My faith is pretty much nonexistent; and that’s probably why my prayers aren’t answered. I don’t believe in hope, because hope should have brought us a miracle a long time ago. Hope should have allowed mom to be admitted to a trial. Hope should have never let this happen multiple times.

So, instead I deal with this the best I can. I try to take it day by day and not look too far ahead. It’s easier than it sounds, but this is our reality. This is what we are all living. 

As I finish this blog post, my eyes go to her chest. I watch it move up and down. She’s still here, and for that I am thankful.

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The Conversation No One Wants to Have

There comes a time when reality sets in and you have to be honest with yourself and the people you love. You have to tell them the hard truth. The truth that no one wants to hear, the truth that no one even wants to speak.

There is no cure. There are no other options.

We’ve heard it all over and over again, but today, it was different. It was like hearing and living it for the first time. It was the first time my mom really knew what was going on. It was the first time we were all crippled by the outcome.

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At first we fought. We fought hard about what reality was and what my mom was thinking was possible. I fought with her for the first time in a while. I didn’t mean to. And it hurts me that with our limited time, we got mad at each other. That’s not supposed to happen. But my mom dying when I am 24 years old isn’t supposed to happen either. Not to me, not to my mom and not to my family. This was never in our life book. This was never a chapter.

So, we fought. I fought with her because I love her so much and because I care about her so much. I am her advocate, but sometimes her worst nightmare. I tell her what she doesn’t want to hear, I make decisions she doesn’t want to make and I tell the doctors things she doesn’t want me to tell them. But, it’s all for one thing, it’s for her to have the best care.

The doctor came in today. He reinforced that chemotherapy was no longer safe, it is not an option. The chemotherapy is not working and her body isn’t tolerating it. “I’m not ready to die. I’m not ready to leave my family.” Those words she said, gave me a feeling of a knife stabbing me. I tried to stay strong, for her and for my dad. But, I can no longer be the rock everyone thinks I am. I can no longer sit there and be strong for everyone else, while my world is crashing down. It’s crashing and there is no way to stop it. My worst nightmare is coming true.

We sat there. Whitney (the best big sister, maid of honor, best friend) sat there and helped bring comfort in a time of distress. She sat there, next to me, rubbing my back. She was there for the hardest conversation. And for that I am eternally grateful.

My mom asked what’s next? And, the answer to the question – she gets to decide – to come home or go to inpatient hospice. It’s her choice. She controls this. And no matter what she decides my dad and I will be there by her side; spending the most time with her as possible, as we go through the worst thing possible.

We have a couple weeks to a month or a little more at most. I knew this, but when it was said it felt like a dream, a bad dream. It couldn’t possibly be true. How can this happen to the woman who I look up to, who I call mom, who I run to for everything?

She doesn’t want to die. She doesn’t want to leave us. She’s not ready for this. I can’t even imagine what it feels like for her. She’s being told she’s dying and she doesn’t want to. She wants to live. She wants to be with us.

So, we’re here. We’re at this place in time and it sucks. It’s a living hell. It’s never going to be the same. It’s not going to be okay. Because, I’m 24 years old and I still have so much I need my mom for. I still have so much to share with her. And, because my parent’s just celebrated 25 years of marriage and my dad needs her. We need her.

Life isn’t fair.

 

Triple Negative Breast Cancer Awareness Day

Today, March 3, is Triple Negative Breast Cancer Day. It was started by the Triple Negative Breast Cancer Foundation to raise awareness for this aggressive type of breast cancer. About 15-20% of breast cancers are triple negative, meaning tumors do not respond to a receptor-based treatment plan and have more of a chance to recur than other subtypes.

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Every breast cancer my mom has had throughout her life has been triple negative. We have beat it and survived it. But, this time, this has been a challenge we were not ready for. This diagnosis has changed our life – how we live, how we think, and how we act.

As I’m writing this, I have tears rolling down my face – this being the first time in a while that I’ve cried it all out. Today was a difficult day and it seems like each day is becoming more of a challenge for all of us. Transporting her to doctors appointments at Yale – Smilow Cancer Hospital has become more and more difficult. My patience, strength and hope are being tested in ways that I didn’t know were possible. But, we are still all holding on – holding on for that good day, that moment her personality comes out from hiding behind the cancer, that miracle we’ve been so desperately hoping for.

She has become weaker each day, when we believe she should be getting stronger. Physical and Occupational therapy is done every day – but she can’t lift herself up, she can’t walk, she can’t dress herself. She has always been an independent woman, and I can’t imagine what this feels like for her. She has no control over anything any more – not when she eats; when she gets up to go to the bathroom; when her next doctors appointment is; when she will get ready for bed. And she doesn’t have any damn control over her cancer.

We used to call her a control freak. (I know, that’s harsh, but I swear she enjoyed it.) She used to keep the house in tip-top shape, cook dinner every night, do laundry and iron our clothes each night – all while working full time. She kept track of all of our doctors appointments, medications and needs. I see her in myself a lot of the time. She instilled in me the values of keeping a clean house, being a good cook and being organized. I’m sure my husband refers to me now as the control freak.

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As a lymphedema specialist examined her arm today, and wrapped it, I thought how much more of the poking, prying, and examining can she take? How much more can all of us take? As I looked at her swollen arm, my heart broke. It broke because as if the cancer wasn’t enough, she has a swollen arm that can barely move and a drainage bag for her tumors that she now carries as her purse. But when you ask her how she is doing, she says fine. Whether she is lying or exaggerating – it shows her strength. She’s strong and that’s why she is the person I look up most to. She carries herself with grace, even though this whole cancer thing sucks.

On our way back to the rehab facility, I turned, looked at her and started to cry. I said, “Mom, what is going on? What are you feeling? Please talk to us.” She didn’t say anything for a few minutes. But then she did and what she said broke me even more. Now, I’m not going to tell you exactly what she said, because I don’t want anyone to get the assumption that she is giving up, but this battle is taking everything out of her.

And, I am scared of loosing my mom. I’m scared of what that feels like. I’m terrified of her not being here for me to call to ask questions, like how long to cook the chicken; or calling her a millions of times a day just to tell her what happened each minute play-by-play. I’m scared of loosing the woman who has made our family so perfect.

So today, and every day that you can, remind yourself of the need to find a cure. Remind yourself that you’re not alone if you’re dealing with this and it is okay to be scared.

And most importantly, remind yourself to live each day to the best that you can.