Odds are...

Mom and Dad

I wake up every morning hearing my parents talking to each other. What a beautiful thing to hear. True love that has lasted their lifetime. They've lived all over the world, lasted through incredibly challenging times, had 2 children, and still made it until today with love in their hearts. My dad enlisted during the Vietnam war and was stationed in Korea. He met my mom at the local chapel where she was making cookies and challah for the Jewish GIs. My father fell in love with my mother at first sight. A Korean Jew. He asked her to marry him on their first date, she agreed on their second. They were married after three months. Forty eight years later, here they are. Still in love, still flirting, still happy. It's what we all dream of. It's so rare, so incredibly awe worthy. And I'm truly happy for them. I look at them with pride that I'm lucky enough to have them as parents. What are the odds that I would end up with a family as incredible? With a brother that makes me laugh when I want to cry? With parents who will never give up. I wish they didn't have to see this, to experience this insane disease. I'll fight as hard as I can. I'll do everything in my power to defeat this. Because I never want to break their hearts. They are everything to me.

My brother Avi and me

I always bring treats to chemo to share. Since it was my birthday, I decided on birthday cake. Then it really hit me that I would be continuing celebrating at chemotherapy. Not a concert, not a festival, not drinking  tequila with my friends, but in an infusion center getting my biweekly life saving poison. And with a new cocktail. One that would change my physical appearance indefinitely. My doctor at MD Anderson looked at me and said, "You'll be balder than me. " That is very bald. It took a few days to digest. I finally understood what that meant. I will no longer be able to hide my condition. I know people  will look at me. That way that people get looked at when they are pitied, which is a look that I despise.  I'm not afraid of being bald. Being a hairdresser, I’ve shaved my own head before and been every length and color possible. I'm mad that it isn't my choice and unsettled about the looks I'll get. There will no longer be any moments of normalcy. I will be able to feel my bald head and see myself in a mirror and won't ever be able to forget for even a moment that I have cancer. So when it hit me, I couldn't control the emotion. I was standing there one minute and the next I couldn't hold back the tears. It was in that moment that weakness overcame me and I just gave in. In the middle of the Publix baked goods section, ordering a birthday cake.

A couple days later I started wondering when and how my hair loss would occur.  I sat at a table with my mother at breakfast chatting about it all. As I talked, my mother rushed at me with tissues before my nosebleed fell into my cereal. Nothing new here.  It's been happening for months now. This is just one of many side effects I've endured.  At that moment , I was reminded of what I’ve been experiencing and realized I would be ok.  But I needed to be armed with what to expect, then I would be prepared and my mind would relax. Because if I'm destined for it, why waste any more time feeling sorry for myself?  Let go and find a way to handle it.  So I pulled myself up by the boot straps and went searching for answers. What I found was really interesting.  I found every possible scenario. I read everything from, "I lost my hair after the first infusion" to "I never lost any hair at all."  There were stories upon stories about patches of hair loss, thinning, baldness, and no hair loss at all with this new chemo.  I'm one infusion in and haven't had half the side effects so far.  So I'll count my blessings at this point.  However, I lost half my hair with my previous chemo cocktail after a few months.  So who knows?  I'm hoping for the best and stocking up on hats in the meantime.

This new chemo cocktail was tough. It’s called folfiri. I was broken from it and didn't know if I could come back. I felt like nothing would be the same after this one. And I am to be on this chemo indefinitely. Can I do it? Would this be the thing that would finish me? It felt like it. I couldn't read, I couldn't concentrate on anything. Writing has always been a way to process and handle things. Now I was having trouble. It's like my brain went on hiatus. This was supposed to be easier. I hadn't felt this sick in months. The exhaustion and nausea was overwhelming. All I knew how to do was sleep. The constant nausea sparks an intense emotional response. I only tear up and cry when it hits really hard. It serves to remind me of unending vomit, ambulances, and hospital stays. The day after my first infusion with the new drug, my body swelled to discomfort.  My face, my eyes, my torso, my feet. But my hands were the worst. I wear two of my grandmother's rings. We were very close. They give me strength. But now, with the swelling, they felt like my fingers were going to pop off. It took about three days for the swelling to go down, but then the skin on my hands started cracking and peeling.  A week later it still hasn't stopped, but at least the nausea and fatigue have become manageable.

I went in to see Dr. El Reyes. I've been seeing him since the beginning. He's the head of colorectal oncology at Emory. He told me ages ago to see him primarily when the protocol changed. And it has finally changed.  With the new chemo comes the possibility of a clinical trial. In my constant search for information, I found this one that seemed would fit my situation. They've just opened up the trial to colorectal cancer. It's had a very successful run with pancreatic cancer.  A woman was just cured from late stage pancreatic cancer with this drug. Amazing. It was completely eradicated from her body. The thought of being cured, of having this thing that has completely taken over my life, gone, is overwhelming. I can only imagine how she must feel. No more nausea, no more pain, no more fatigue, no more wondering. No more infusions, no more going in for fluids because of dehydration from chemo. No more chemo brain, no more tears. I feel only happiness for her. And hope for me. But there's a catch. Isn't there always? In order for me to qualify for this trial, I have to fail at this chemo. That means my body has to take this new chemo four times and I have to still see growth. If I respond well, if it causes my cancer to recede, then I'll be on this indefinitely. If I don't, then I get put on this experimental drug that may or may not work on me. So what do I hope for here? How do I process this information? The answer is, I don't. I just wait and try not to think about it. I want so badly to get into this trial, but at what cost? My cancer is aggressive. It may grow. But that is so scary. Dr. El Reyes seems to think I'll respond well to this chemo. But that thought is difficult too. These drugs are debilitating. So it's best to not hope for anything at this point. I'm one chemo in. Three to go until I find out. I must carry on, put on my armor, and trudge forward.

 It seems that I'm always thinking about the odds. The statistics. The survival rates. The age of diagnosis. The drug combinations, the side effects. How long will it last? Will this be the thing that kills me? I'm not the kind of person to just trust that someone else knows what's best for me, so I try to consume as much information as I can. That means Google. A lot. One of the most difficult things I've had to digest is that the statistics for my diagnosis are just plain bad.  From what I’ve read, I'll be lucky to make it five years. It's gone round and round in my head. At first I was shocked. Then scared. Then mad. Then defiant. Now I'm at peace. Not that I accept it, I'm fighting beyond the statistics. But there's a peace that I've found past the stress. Past the fear, sorrow, nausea, and pain. It resides in my happiness, in my laughter, and my faith that I can beat the odds. What I've learned is that all this information isn't exclusive. I'm not tethered to it. Every case is different.  All this information is what could happen. Not what will happen. It's an important distinction. This information is in the past, not the future. So if I'm  going to play the odds, I've got to look at my life and my family. Our lives have already beaten the odds. Because if my dad could enlist during Vietnam, get sent to Korea instead, meet the only Jewish Korean girl out there, get married almost instantly, have it last for 48 years full of love, and overcome all the odds out there, then I have to believe that I am destined to beat the odds myself. And believing is everything.

The Big Lebowski chemo

“Always listen to the experts. They’ll tell you what can’t be done, and why. Then do it.” ~Robert A. Heinlen, Time Enough For Love

Enough

I've never been the type to think that life would just be handed to me. That things should just be easy. I've worked hard for the things I've wanted. And to be truthful, there are things that have been easier for me than some. Harder than others. I've had my heart broken into a million pieces. More than once. I've had to build it back into a whole. Bleeding torrents. Every single time. I've had disappointments. Things that didn't go my way. I've lost my home, my job, my savings, but I kept trying. And little by little I've clawed my way back. But nothing compares to this. The complete and utter loss of everything that I define as myself. My independence. My freedom. My ability to be the person I know I've been. To offer to others my caring and love. To have the energy to stand alone. To work hard. To know that it'll all work out in the end no matter how difficult it was at the time. Somehow it would all be ok before all of this. I wonder if I'll ever be able to find my way back to that place. I'm slowly losing my mind. Bit by bit. My memories are disappearing and I have no recollection of them.  Not even a fading partial thought of these things I was present for but couldn't even begin to tell you about them. Just another side effect of chemo. As I have lost my ability of short term memory, I feel I should try to record it. But with more of me. My art, my vision, my perspective. These things give me occasional freedom from my experience. I know that I am forever different and strangely I am perceived that way. Putting myself out there and being so transparent has put me in a glass box.  One which I've never experienced before. People say beautiful things to me. I get hugs all of the time. I'm not a touchy person, but I like it. I'm closer to more people than I've ever been. And bizarrely distant simultaneously. 

What am I supposed to say now? Eight months later while still hoping for and believing there will be a cure for me. My body tingles when I'm in bed waiting for sleep. At times I'm shaking so much inside that I'm sure whatever comes out of my mouth will be a stutter. But it isn't. My feet and fingers are mostly numb. Or they hurt.  I wonder what the permanent side effects will be from so much intensive chemotherapy. I tremble from chemicals and curiosity constantly. I often wonder if anyone can see it, but it's invisible to everyone else. I alone can feel it and sense it. But I put on the brave face for every reason I can't even begin to name. Because it's the best thing I know how to do. The pain in my abdomen is getting more present. It's nothing compared to when I was diagnosed, but it concerns me. I'm doing my best to be positive. But sometimes I just exist in a state if neutrality. I can't get too excited in either direction. I have to exist in calm.  Because what good would it do to be falsely one way or the other? So I choose to appreciate.  I love my family and friends. I look at the sky constantly in a state of awe. It is unending and gorgeous and appears to smile at me. I marvel at the wonder that is life as we know it.  I look at people and bask in the feeling that we are capable of so much. I believe that somehow, someday we will find a way. So I refuse to stop believing in us. It scares me and pains me to see such discordance within our race, but for some reason I believe we will rise above. I know how much bravery we are capable of. And how much love and fear. And hope.

Life has a way, doesn't it? Of really hitting you hard to make you feel it, then backing off for a bit. The older I get, the more solicitous I am. I don't know how I went through life when I was younger without feeling so much. I just did things that were interesting and if it didn't work out, then I tried something else. There wasn't much emotion about it. But now I feel so much more. Everything has meaning or purpose or a lesson.  At times the activity of ingesting my life experiences is overwhelming. I reel from it all. I understand a lot of aspects of things before or as they happen. My learning curve is vast.  I guess it has accelerated with each life lesson or experience. I've been writing very raw because I want you to understand what it's really like.  I wanted to hide.  But I wouldn't.  And now I'm so tired that I can't. My life is difficult now. When it seemed so sweet before. But I share with you so you understand that it can change in a minute. None of us are guaranteed a long, easy life. But we are given choices. Choices to appreciate what we have. Choices to live in the moment. Choices to be open to love and experience. We don't know if we'll be gone tomorrow or be able to win the fight of our lives. But our choices define us. This is what we are. This is what makes us beautiful, individual, strong, and vulnerable. This is what makes us human.

So I choose to fight. I choose to persist. One of my most important choices is to go to MD Anderson. It's in my artillery. And it's immensely arduous. I think the hardest thing for me when I go to there is seeing the children. Bald, walking with face masks, tubes coming out of their noses. Warm tears flowed silently down my face when I saw them that day. But they laugh. They actually giggle. I can't imagine how they deal with what cancer patients go through. It's one thing to be an adult and go through it. We understand what's happening. We are warned of the side effects. We understand that if we don't endure the treatment, that we die. But a child just suffers. They haven't got the capacity to realize everything that needs to happen or the why. Maybe that's a blessing. So they persevere. They smile, they find the true, pure, happy moments. They are capable of dismissing the difficulties that go with every day cancer life when they have good days. And as much as I feel sorrow for them, they inspire me. They remind me to be happy. To not be bogged down with the weight of this illness. It is every emotion to really embrace the actuality of childhood cancer. Or any cancer to be honest. As I walk these hallways, I experience an overload of emotional  stimulus. But within these walls there are answers, cures, and hope. I watched a woman in a wheelchair wearing a neon pink wig. Her fight is just as hopeful. There is inspiration everywhere I look. If I choose to let it in. And I do. I drink it like a woman completely dehydrated. It makes me think about being strong and being light. I think of the things that I need to move forward to also be content. And what would be enough for me to just be. So it's inspiration. And love. Strength and observation. Patience. Happiness and being effective. And the giggles.  

  

Wednesday was difficult.  The second day at MD Anderson is always so hard. It's emotionally draining, mentally challenging, and physically tiring. It was the day that I got my answers from Dr. Fogelman about the tests that were done the day before. I was bracing myself as I always do, but today was different. It was the day I found out about what the cancer in my body was doing after a two month break from my harshest and most effective chemo drug. They found a few new lesions on my liver. Each about a half a centimeter in size. The cancer roller coaster is a very real thing and I was really riding it this day. I felt like the entire room got ten times smaller and my head got very light. I was having trouble concentrating for a moment. I pulled myself out of the vortex of disappointment and started to ask questions. Apparently it wasn't horrible, but it's definitely time to change my chemo drugs. We'll be changing to a regimen called folfiri. Another combination of drugs to fight this thing that has decided to make its home in my body without my consent. I knew this day would come, that the chemo would stop working, but there's nothing that prepares you for it. It just sucks. This new combination will make me lose my hair. He told me that I will be bald for a long time. This drug combination would be a good one to be on for a while. There were no specifics. Fighting cancer is not ever a clear cut plan. Especially with a stage 4 diagnosis. We just throw everything at it and hope for the best. So that's what I'm going to do. I'm going to hope.

The last appointment I had that day was with my pain management doctor. He explained a lot about the pain drugs I could take, couldn't take, and why. It was a very interesting conversation. I began to tell him about the pain in my mouth. This is another side effect from chemotherapy. It occurs in a lot of patients. My doctor was no stranger to it. After a long consultation, he finally told me about a remedy he had only used on 40 people and that it worked on all of them to some degree. He also informed me that it was really a dye used in the body for other things, but he discovered that it also worked to address mouth pain. He warned me was that it was a very strong dye. It would ruin clothes and stain anything it touches. I was to hold it in my mouth moving it around for 5 minutes. Let me tell you that after the stress of the day, this was the most ridiculous ending for it. Looking into a mirror afterwards was shocking! Of course I didn't look until I had gotten into the car. I spent at least 30 minutes walking around the hospital smiling at people and talking to the pharmacist before I saw what I looked like. My mouth was insanely blue! And at that moment, the seriousness of the trip left me. I began to laugh at myself and joke around with my dad as we drove to the airport. Then I continued to walk around the airport and smile at people. All the way home.

Living a life with this much seriousness makes me wonder about the future. What is my legacy? I guess the thing I'd like to leave behind is that there is always hope. Always laughter. Even in the bad times. This is a beautiful  life.  Regardless of the trials. I have so much love.  I feel so much.  We seem to concentrate on the hard stuff and forget about the good.  There is so much good.  So pay it forward. Laugh out loud.  Forgive and ask forgiveness. And be content. Allow people in. Have conversations with strangers.  Drink in this incredible life and really see what's out there.  Do something you've never done.  Just because. Be inspired and trust yourself  And be proud of who you are, because that way you can show the way. Show compassion, humility, and be stubborn, stand your ground, because no one will do it for you. But be humble. We are all human. We are all flawed.  But we all have the ability to be amazing. I am just one woman.  And I'm only here for a short while.  No one is here forever. I can't help but think about how much bigger this world is than just me.  I'm but a tiny fleck in this expanse of a universe. There's more than I can possibly comprehend, but what I do understand is that we can be so beautiful. We can make a difference, even if only a little one.  And maybe I can make a difference in just one life. And that would be enough.

“Sweet dreams till sunbeams find you

 Sweet dreams that leave all worries behind you

 But in your dreams whatever they be

 Dream a little dream of me”

~Gus Kahn – Dream a Little Dream of Me