Gratitude

Emory University Hospital was bustling the day that I went in for chemo. It was the first time I had gotten my infusion there. Each time I go into a new location, I wonder how my craziness will be received. My oncologist didn’t know what I had been up to, so when my father told him about my antics, he told me that he had to see it. So I obliged. My friend Stephen had come in town and joined us for this costume. We went in as Austin Powers, Dr. Evil, and a fembot. At previous chemos, I had gotten used to walking into one place. Going to the university hospital was different. We had to go to the lab on one floor, then to my oncologist’s office on another, then the infusion center on yet another. This was incredibly funny! The exposure to the costumes was bigger than ever before. People had the strangest reactions. Some couldn’t help but laugh but refused to make eye contact, some asked for pictures with us, some immediately started conversations with us. We continued to dance, laugh, crack jokes, and hand out lollipops as we walked around the hospital. And all the while, we had the Austin Powers theme song playing out of a speaker we had with us.

Austin Powers Chemo

I find myself at a bit of a loss these days when I face my treatment. The waiting game leaves me fiddling with my hands like a child nervous about a punishment. There are days that are harder than I think I can handle.  Then some that are surprisingly tenable. I went into this chemo thinking I'd be alright. After my four week break from treatment, I felt strong. I didn't expect the pain and extreme nausea. Waking in the middle of the night to empty my stomach with retching heaves was not the plan. It felt like someone had punched me hard and left a bloody pulp where my stomach was supposed to be. I finally went to my GP after a few days. She gave me a strong antacid and contacted my oncologist. Within an hour Dr. El Rayes' office called me and had me go into the infusion center for IV fluids and meds. I had started to feel better with the IV anti-nausea meds. So we proceeded with the pain meds. Within minutes I began throwing up again. This time it wasn't stopping. They took me to the hospital where they kept me overnight for observation and to stop the vomiting. The level of care I received was incredible, even if I was itching to go home.

Marti and me before the concert

I enter each challenge hoping that there will one day be an end to this. That maybe at some point I can live a normal life again. I think of the monotony of living with chronic illness. All I want is my life back. I wonder if it will come. But until then I turn to distracting myself with good times and music. So I went to visit my friends at the beach. This trip had been planned for months. We went to see Styx and REO Speedwagon. Then a few days later we saw Ratt. I love my eighties music. And though we had both been ill the week before, it was the music that healed us.

There are days that I hardly know that anything is wrong with me... until I catch a glimpse in a mirror or I see someone staring at me. It doesn't bother me, it's just a reminder. I've worn my hair so many different ways that it doesn't really matter. It's the children that are the funniest. Their raw, innocent honestly often leaves me with a smile on my face. I think the best was when I went to the airport and saw a little girl with golden curls staring at me. She couldn't have been more than 5. I smiled at her as I walked by. As soon as our gaze broke, she screamed at the top of her lungs, "Mommy! That lady has no hair!" I burst into laughter and couldn't help but think how mortified her mother must have been. She was just adorable.

Beavis and Butthead chemo

My next chemo was surprisingly doable. I went in, got my treatment without a hitch and finished with hardly any side effects but being a bit tired. This was great, because immediately after that I went to see my high school bestie. Her 5 year old daughter had received a kidney transplant a few months earlier and I felt the need to see the both of them. She had been diagnosed with a rare autoimmune disorder which led to the need for a new kidney mere months before my diagnosis.  I found the parallel of our fights for our lives so strange. Neither of us are out of the woods yet, but we both have defied the odds and survived when there was doubt that either of us would. I needed to spend time with her and to feel the comfort of being with one of my oldest and dearest friends. It was well needed for both me and Dena.

High school besties, friends for life

I've seen countless videos of moments of magic. People who suffer from cancer or other life threatening diseases. Meeting their idols or being swept away by a kind act. It makes me cry every time. I feel it deep in my heart. Throughout my entire being. My happiness for them mixing with the bittersweet knowledge of the daily pain and struggle. The fight for one instant of incredulity that drives the fight forward. It's amazing what one pure moment can do to push us into the next phase. To find the ability to progress when sometimes it feels like it never will. It helps to find the strength to take the next step when every light that guides you seems to have been extinguished. That when there seems to never be a reprieve, there might just be an extra push to not give up.

Cancer is ugly. I've never felt so hideous in my life. Not just physically, but within my being. You may not know by looking at me, but every day I look in the mirror and struggle to recognize myself. And I  realize that my care free days are over. I try to visit those days as often as I can, but they are no longer mine to keep. I know that the thrill of a first date is unreachable. That the loneliness of the lack of a possible future with someone is a constant companion. Because who would want someone so broken with cancer that there is no end to the suffering? I have no choice but to live with this, but who would voluntarily take that on? I have an amazing support system. I feel love all around me. And I am so truly thankful for it, but the intimacy of romantic love eludes me. And I have to come to terms with that. I have to focus on my health.

A good friend of mine recently told me that I'm not alone in this. And although I'm surrounded by loving people and incredible support, he was wrong. I am 100% alone in this. No one is doing this for me. This is my cross to bear. This is my body, my sorrow, my pain, and my fight. Yes, it affects everyone that knows me, everyone that has ever been or is close to me, but it's all mine in the end. It's my loss of independence. My loss of identity. My loss of health and physicality. My loss of everything I've ever built for myself. My loss of life as I knew it. And sometimes in the middle of all the love I get lost in the darkness of sorrow. And I allow myself that. To acknowledge it and then let it go. Holding onto it doesn't do me any good. But ignoring it doesn't either.

I think about how far I've come. Over a year later and I'm still kicking. Hard. Living as much as I can in between chemo sessions. None of it could happen without the graciousness of the caring people who have contributed to my life. Who make sure I have the means to remember that my life isn't just cancer. Then the good times find me and I let them propel me forward. My friends who give me plane tickets. The many that have donated to my bills, medical and otherwise. The ones who care enough to send packages or a sweet message. These things hand me gratitude on a daily basis. When I have my low moments, it's a reminder that there are people who support me. Really and truly. For each moment of magic, no matter what size, is gigantic in my world. The love, the laughter, the care, and charity that I feel directed towards me helps me find my footing in this dangerous dance with cancer. And I am thankful for even the smallest moments. Because even if I can't see the light to guide me out of this, I can feel the warmth that keeps me holding onto the hope that I one day might.

Dena and I

“One life

With each other

Sisters, brothers

One life

But we’re not the same

We get to carry each other

Carry each other

One”

“One” ~ U2

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