Epiphany

My father called me and told me to come home. Jude, my greyhound, wasn't doing well. I knew in an instant what that meant. And I wasn't ready. My heart started breaking in that very moment. I was in the city for a CT scan and got the call when I was done. I immediately left to be by her side. Preparing myself to be brave enough to be who she needed me to be. The entire ride back felt like an eternity.  And all I could think was that it couldn't really be her time. That maybe there was some way that it could be something other than what it was. When I walked in the house, I knew better.  My mother was crying, sitting with her and trying to massage her legs thinking she could help her stand again. Jude was laying there panting. I could tell she was in a lot of pain. She had lost the ability to stand on her own. So I laid on the floor next to her, started to pet her and spoke gently into her ear. "I'm here. I love you. It's ok..."  Over and over. She began to calm her breathing and relax slightly. My father had made an appointment at the vet. I stayed on the floor with her, talking to her until we had to leave. We put her in the car and I laid by her side. When we got to the vet, she examined her. She did x-rays and an ultrasound.  She told us that there was a bleeding carcinoma in her liver. She was bleeding internally. Her body was breaking down. It was doing its best to work by using all its energy to fight the chaos inside her which is why her legs stopped working. There was nothing they could do. They made her as comfortable as they could and put us in a non sterile, cozy room to share our last moments. She looked at me when I walked in. We both knew. I laid on the floor with her, wrapped my arms around her, placed my forehead to hers, kissed her, and began to whisper. "I love you so much. Thank you for every amazing moment. I'm here for you..." After a few moments she was gone. I felt her go. When I lifted my head up, the horror of the reality of it all overcame me. And though I had been crying since I got home, the sheer pain of losing her hit me like I had been crushed by a ton of bricks. I laid there and held her and sobbed while my heart shattered into a million tiny pieces. When I finally got up, I took one last look at her. She looked like she was sleeping. But her ears were up. My voice was the last thing she heard.  She was listening to what I was saying as she took her last breath.

The day after her death I was broken and numb. Paralyzed with sadness and loss of hope. But I forced myself to go through the motions. I needed to go to my oncologist appointment. Even getting out of bed was difficult. It was physically and mentally exhausting. But one step at a time, I did it. My parents and I made our way down to Emory to see Dr. El Reyes. This appointment was very important. I would find out if I had made the clinical trial. And as much as I had been sitting on pins and needles about it for the last 2 months, I was struggling to care about it.

I got the results of my scan and it had shown that my cancer was stable. It had not grown or receded. It was, for the most part, good news. But the clinical trial I wanted so badly was now out of reach. If there had been growth, however small it may have been, it would have guaranteed my spot in that trial. I was now to be on this chemo indefinitely. This one that exhausts me, that gives me mouth ulcers, that makes me feel my body breaking down, will now be my constant companion for I don't know how long. My parents were startled by the news. Like me, they were hoping for the acceptance into this trial. So we started asking questions. Why? What now? Will there be more trials? Can I take a break? After getting all the answers needed, I decided that the next step is to start going to Winship Cancer Center at Emory for my treatments. Hoping that at some point, he will find another drug that can help me go into at least partial remission. I have about 8 drugs for chemo that will help me stay stable before I run out of options. I'm on number 2 now. Each drug will eventually stop working. So at some point, a clinical trial may be the thing that could save me. I asked about doing a procedure called gamma knife, a type of radiation, along with a few other procedures. He's showing my case to the radiation department to see if I'm eligible for any of them. We'll find out soon if I qualify.  I needed time to get my head on straight. It was all too much. So I decided to give myself some. I couldn’t get my thoughts together in time to plan a costume, so my first chemo at Emory will be without one. The first since the beginning.  And I decided to take one chemo off, so May will be a month to recharge and get my strength back. So I can face it all again. I just have to continue to have faith that it will all fall in line.

I left the office feeling nothing. No hope, no happiness, no sorrow. I could no longer care about anything at that point. So I went home and packed a bag. I had planned a trip to see some friends about a month ago at the beach. I had to leave. The heaviness of it all kept me from processing any of it. When I got there, I felt it all start to unravel. I wept more than I’ve ever remembered. It was cleansing. I was able to lose myself in friends and experiences. And began to feel thankful.  Thankful  for friends, thankful for family, thankful for being able to have a beautiful soul like Jude in my life for 8 incredible years. And I thought about the unfairness of it all. My gorgeous, sweet girl died of cancer. The very thing that has plagued me for the last 10 months. I went into a deep depression for several days. I even felt like giving up. I had lost the sweetest, most pure soul I have ever known. She stayed by my side when I wasn't well even though she was suffering in silence. She taught me by example to be strong, to cherish the good moments, to be loving. She never gave up, her body just couldn't do it anymore. Her death made me realize how afraid I've been of dying. That it has paralyzed me. Even as she died, she taught me to not be scared. I'm no longer afraid. We all face death. I've been focusing too much energy on that. None of us will escape it. It's not how we die that matters. It’s how we live. It only takes a moment to die. It takes years to be alive. And I'm going to survive. I'm going to get stronger. I'm going to find a way to live my life my way again. And love again. Because that's what truly living is all about. Life has a way of teaching lessons. Sometimes painful, sometimes wonderful. And if you're lucky enough, you come out the other side with appreciation for it all.

“Smile, though your heart is aching

Smile, even though it’s breaking

When there are clouds in the sky

you’ll get by

If you smile through your fear and sorrow

Smile and maybe tomorrow

You’ll see the sun come shining through

for you

Light up your face with gladness

Hide every trace of sadness

Although a tear may be ever so near

That’s the time you must keep on trying

Smile, what’s the use of crying

You’ll find that life is still worthwhile

If you’ll just

Smile”

~ "Smile" by Charles Chaplin, John Turner, and Geoffrey Parsons

Affected

I woke up in a pool of sweat. My body's feeble attempt to expel the chemo.  A fight that doesn't know where it's going. My physical desperation to know what's right. My neuropathy is excruciating. It’s in my hands and has made its way up most of my legs past my knees. And for the first time I have insomnia. At least before, I could pass out and escape the experience. The ick was inescapable now. All I knew how to do was exist. To get past the current moment and hope there would be a breaking point. I knew there would be, it was just a matter of when. If I could only make it until then. It’s amazing to me that it always hits me differently. It’s horrendous one week, then the same infusion the next time is brutal in its own way. At least this time the worst of it was over within a few days as opposed to the last one imposing on my life for about a week.

The side effect I was expecting has begun. The first time it happened, I showered and felt my hair through my fingers as I shampooed it. And as I removed my fingers from my hair, it stayed intertwined in them. As a hairdresser, I know there’s a certain amount of hair loss to expect daily. This was a lot more than a normal day. I would say that it was at least 4 times what one should expect. I went to the pool with Marti right after and the hair kept dropping out of my head. We both kept looking down to find my hair on us. I only wonder if it will stop after this infusion or continue to get worse.  I lost about half of it in the middle of my last chemo. I’m probably going to lose at least another half. My hair continues to fall out excessively with every shampoo. But for some reason, my emotion about it has disappeared. At this point, my observations have taken on a strange curiosity. I feel like I’m a body to experiment on. I get to see all the trauma of chemotherapy played out in mine. My eyelashes are almost gone and my eyebrows are slowly falling out and lightening. I recently noticed that my hair is growing in different. There’s a little more than four inches of straight hair at the base of my head. That is equal to the nine months of chemotherapy I’ve been going through. I’ve had curly hair my entire life and this feels bizarre. I am truly intrigued about everything that’s happening to me and the emotion about what I’m going through is beginning to subside, regardless of the pain and sickness. It still exists, but it comes and goes. My interest in what’s happening is taking over. And that in itself is fascinating.

Within a 24 hour period I found out that two of my friends were diagnosed with cancer. One of them found her breast cancer early and will be able to treat it with a lumpectomy, some radiation, and some chemotherapy. Though the next four and a half months will be difficult, no cancer is easy, she should be ok after that. I’m thankful that it will be a complete solution for her and that it is curable.  I also am glad I can help her through this. Even if only by being an ear for her. My other friend was diagnosed with a stage 4 small bowel cancer. The solution won't be this way for him. His chemo regimen will be the same as mine.  And supposedly incurable, as mine is. I feel so much for him. I know what this road means. The difficulties he'll encounter. And all I know is that I wish I could take it all away. But there is no taking it away. I can only be there for him as all of my friends and family are here for me. I went to his oncologist appointment with him when he got his diagnosis. I sat in that small room with him when she walked in. She was very serious and very intense. As she began talking, I felt the room get smaller and his dumbfoundedness take over the space. I knew as he listened and asked questions that it was all too much. I felt as if I was getting my diagnosis all over again. There was this need deep inside me to try and protect him, to make it all ok. If only I could. And the sorrow that I felt for him welled up inside me and threatened to spill out of my eyes. But I couldn't cry. I needed to be strong for him. So I sat there and talked with both of them. He told her I was going through chemo as well. I asked a few questions and spoke a little bit about my experience. She was a truly amazing oncologist. She encouraged him to believe that he could live a good life even with this diagnosis. And I chimed in. Also encouraging him. She said, "Look at her. She doesn't even look sick." And I nodded in numb agreement. He was shaken. Who wouldn't be? She left the room for a moment. I stood up, walked over to him, and asked if he was ok. I knew full well that he wasn't. Looking into his eyes, I saw what he was feeling. The uncertainty, the fear, the inability to process so much information in a short period of time. The instinct to be the strong man he is, conflicting with his present state. In that moment, I knew that I would be there for him. No matter what comes next. And he felt comfortable enough with me to let me.

Over the next few days I answered all the questions I could for him from my perspective. I couldn't help but think it must be hard for him. At least when I was diagnosed I had a ridiculous amount of pain killers being pumped through my system so I couldn't think too far ahead. I didn't have the capacity then to let the what ifs and maybes in. Those came months later for me. Those will drive you crazy. I explained that to him, but it's difficult to shut them out. Anyone would be driven to high stress with the thoughts that cross your mind.

It's an interesting situation to be in. It's strange to be a cancer mentor.  When I got diagnosed I had people reach out to me to offer insight, but I was so overwhelmed with keeping up with friends and family, that I didn't let them in. Looking back, I should've probably spent time with them. To ask questions, to help with getting myself mentally prepared. It makes me think that maybe this is something I can do more of in the future. To pay it forward. I remember the thoughts of complete helplessness and loss of identity. How was I going to live? Could I survive? Would I ever be myself again? How could I hold onto everything that I have worked so hard for? But I was so guarded. So stuck in being strong. I've found that after so much time going through chemo that I've softened. That I let people in. That I'm patient and I touch people more. My hugs are plentiful.  And my appreciation is so much deeper. For everything. For living. For beauty. For our differences and our similarities. Despite all of the ordeals, difficulties, and pain, there is a new peculiar sense of being. I have a purpose now. This existence hasn’t broken me beyond repair. I’ve found my strength. It will get me through the next protocol, and the next, and the next. Until I’m done.

It seems to me that when it comes down to the nitty gritty, what we really have is each other. We have the ability in life hold each other up, to help each other believe, or to walk away. We can have faith in each other or choose to ignore. We can lift our faces in laughter, or obscure ourselves in sorrow. We can inspire and look onward towards greatness or hide and lose ourselves. We can find strength or wallow in weakness. And all of this can be easier when sharing with someone who cares. One who cares about our low moments and cheers us on in our achievements. When we are broken and can't seem to make it one step forward, sometimes all it takes is a hello and a smile from someone who cares. No matter how long it’s been or how new the friendship. Never underestimate the power of a word or a smile. And even a warm hug. These things are full of simple beauty and incredible strength. You can give these things away. You don't have to own them. They will come back to you when you share strength and love. These alluring human expressions contain the essence of who we are, or who we could be. And wouldn't you want to be everything possible? I do.

Be soft. Do not let the world make you hard. Do not let pain make you hate. Do not let the bitterness steal your sweetness. Take pride that even though the rest of the world may disagree, you still believe it to be a beautiful place.  ~Kurt Vonnegut

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

Balance

It seems to me that life has a way of showing you balance. Balance by opposing circumstances. Strangely enough these divergent happenings or existences are the very things that make us understand greater and feel more. They present themselves sometimes subtly, sometimes with raging acquiescence, sometimes with calm surrender. I find that you can give in or fight it, but either way, you must address it. So I've learned the way to understand the circumstances at hand.  I try to understand it. To know why, completely, and I must weigh in upon these things presented to me before I make choices. Then decide on my acceptance or denial. 

I had an appointment with my oncologist's PA. In our short time together she explained to me that I should understand that I will have chemo every 2 weeks for the rest of my life. I could possibly go to chemo pills eventually. Take a break on occasion. But this is it. She told me I've got to find a away to live my life like this. I'm now at a point that they are gong to go to a maintenance program. And when she stopped speaking, as sweet as she was trying to sound, I wanted to scream at her with my entire being. It's not enough. I won't settle for that. I'll fight harder, do more research, find the new drugs, sign up for clinical trials. I'm not giving up, I'm not going to say ok if you say so. I'm going to keep searching because I refuse to believe that this is all you can do to help me. I will build my body back up. I will fight as hard as I can to defy the statistics and whatever odds are against me. Just because this news is condemning me to this way of life doesn't mean I'm settling for it. I've got a lot more life left in me and I'll be damned if I stop fighting now. Screw this news. I won't believe it. I refuse your pity, I refuse your condemnation, I refuse to settle, and I refuse to believe that my life is this ridiculous, insipid imprisonment of being. When I left that appointment, I had tears of frustration and anger flowing from my eyes. But more importantly, I felt the word, "no" throughout all of me. She had awoken an anger I hadn't seen in myself before and curiously, it was just what I needed to get through this part of my cancer journey.

I later spoke to my oncologist's nurse who I explained that I hadn't heard this from her or my doctor. I asked if this was their opinion and if so why hadn't I been told this already. She's explained that this was not their opinion and yes, eventually we would have to move to a maintenance plan, but it was not the end game to be in the infusion center every 2 weeks. That I was making very good progress. I said that I didn't feel she knew enough about my case to treat me and refused to be treated by her again. To which she agreed to implement for me. 

Though I'm finally feeling the exhaustion.  My sense of humor is dwindling. My optimism is endangered. I just want a break. I thought about writing only about the good thoughts. The moments of joy, of enlightenment, of happiness, but that wouldn't be honest.  The truth of it is that it's beginning to wear on me and I don't know how to process it. I can't use exercise to remove my stress, I can't have a drink because it makes me feel bad since my liver is infested with cancer. I lose energy like water through a sieve and the frustration confines me. So what now? I keep going. There is no other choice. There's no way to give in. Some days are just better than others. This too shall pass. So I cling to the days that are coming. The ones that show me the good stuff, the other side. The ones that show me that the tough side of things will not break me. I may have to endure them, but they will never define me.  Because tomorrow is another day.  Another chance to feel good and to try again. And should I fail the next day, or the one after that, there will be a good day coming. I am certain of that. I keep hearing how strong I am from others. I don't feel physically strong at all.  I am merely surviving. I keep trying to understand why it's strong to survive when all I feel is weak. There are moments that all I feel is broken. Like damaged goods. That sometimes the only way to get through is dream. I dream that none of this is real. That I'll somehow wake up and it would all have been just a moment in the back of my mind. But every time I wake up, this is still my life.

Absolutely Fabulous chemo ~ Patsy and Eddie

So here's the deal. I have every right to be sad, mad, scared, etc. And at times I do feel that way. But it won't defeat me.  I'm not going to let it.  I'm going to be the the one to beat the odds. No matter how scary they sound.  My diagnosis, metastatic or stage IV colon cancer has an 11% survival rate for 5 years.  This is based on people who have had it for at least 5 years based on their diagnosis at the time. But over 5 years ago, they didn't have the treatments they have now. From 5 years ago until today, they've discovered new and incredible treatment options. And I'll be damned if someone puts me into a category and tells me this is going to happen. I say no.  I said it before and I'll continue to say it. I will beat the odds. I won't let them pull me into a quagmire of negativity. I won't let it defeat me. I have a lot of fight left in me. Cancer doesn't know who it's messing with because I'll never give up.  And if there comes a time that I am sick beyond repair, I will still be fighting. But that is going to be a long time from now. There's still a lot of me left to live. And love. So don't give up on me yet.  I still love to hear from you. I live for your outpouring of support. If you find yourself looking at me and others enduring  cancer with pity, please stop. That doesn't help anyone.  I love bigger than I ever thought I could. It's bigger than my body, my mind, or my emotion. It is me and all of you. And I feel it.  It is so beautiful. With all of that around me, there no way I can lose. And for those who are close to me I challenge you. Come with me. Come to the infusion center. Come in costume. Talk to the amazing people who fight with me. Give them something as a token of your encouragement. And see the light you can create. And those who are too far to come with me, go somewhere close to you. Yes, you're going to feel ridiculous at first. But the love and laughter you feel will be soul piercing. Help defy the odds. There is a way to coexist with emotion, statistics, facts, and cancer. I don't have to put myself or let anyone else put me in a category. That would mean that it's all already decided for me.  That would be a tragedy. That would mean I've already given up. I will never give up. 

This has always been me. The strong emotion. The faith I have in people. The love for having fun. The beauty I see in the world. The strength I rely upon. My core hasn't changed. But how I express myself has. I'm still the same person, but quieter, louder, softer and harder. I appreciate more and I love bigger, cry harder, feel more deeply. And I am perceived so much stranger than I ever have been. It's bizarre to see how people look at me now. It's with a softness. It's beautiful. I can look at someone and feel love and support. I can see that they are all these same things in different incarnations.  We as people are beautiful and caring. Strong and filled with love and life. And so ready to share it with those that will have it.  I am incredibly fortunate to have those in my life that are so incredible. I'm alive with wonder and humility that I have the honor of gazing upon this in people who unselfishly share this part of themselves with me. There's a deep unspoken connection with these people. You all know who you are. Those of you reading. Those of you who take the time to say hello, to give a hug, to wish me well. You fill my heart every day. I feel the incredible energy you put out there for me. You heal me. You have my unending gratitude and love. 

Part of my way of coping is to try to do things I would do if I wasn't ill, if my energy level allows it. To occasionally live my life as I had known it to be. So I had a night out. I danced. I felt normal. For the first time in months. I can't explain how incredible it felt to just let go of cancer for a few hours. To spend time with friends. To listen to music. To feel really good. To feel truly happy.  To smile without thought. To embrace real life. These moments make me embrace the true knowledge of what I'm really fighting for. They remind me of my carefree existence before the trials. They show me how much love is really out there. And I am so grateful. There is so much magic in this world. So much to be thankful for. The bad days are awful, but the good days. How amazing. They fill me up with all that I need to get through. Even when it's so difficult that I don't know if this is really going to break me in a way that I can't recover from. If the recovery is impossible, there's a way to integrate it all and turn this intro something better. I can transform that energy into something more than it's parent form. The sum of its parts can be intrinsically energizing. It can drive me forward and give me what I need. For even when it feels like death's door isn't so far away, I rejoice in the fact that it's not opening for me. And I demand it's locks stay in place. For I have the power to steer my destiny. And I will continue, on and on. 

"The only thing worse than being blind is having sight but no vision." ~ Helen Keller

Resolve

I'm tired. Tired of this existence. Tired of being sick. Tired of being a prisoner inside this illness. Tired of not owning anything in my life. Tired of not being trusted to know what's good for me. Tired of being alone in a sea of people. Tired of the frustration. Tired of not knowing. Tired of my chemotherapy induced short term memory loss. Tired of this marathon of a sickness. I'm tired. And I'm terrified that this will never end. 

One of the things that defines us as individuals is the ability to make decisions for ourselves. Our autonomy.  I no longer have that. I try to grab bits and pieces of it, and occasionally touch it, but it slips through my fingers like water. I love my family. I don't know what I'd do without them. They've been there for me through everything. But it's a weight on all of our shoulders as I try to navigate my way through this. I know my parents' love is incredibly immense. I know if the rules were reversed, I would do everything I could to help them, but they're not. And this is something they should never have to see. There's nothing I can do to shield them from this stress. This constant worry and concern about how I'm doing. How do I do this? How can I possibly remove this trauma from our lives? How do I stop the psychological torment that follows us around like a whimpering puppy? 

I wish I could say that through this I've been graceful and perfectly poised, but I'm not sure how that could be possible for anyone with cancer or going through intensive chemotherapy. I'm not even close to being the person I want to be. It gets to me too. I get grumpy and sad. I get exasperated and worn out. Though I try to keep myself together, this thing has made me lose my composure more than once. My family's constant worry about how I am crushes me at times. They shouldn't have to worry about anything but their next trip, or Mom's garden, or Dad's impending photo book. But here I am. The elephant in the room. Difficult to maneuver, even more difficult to coexist with. I become the thing to fuss about, to be concerned with, to become obsessed with. So I do my best to spread myself thin. I spend time with friends, I travel. I retreat whenever I can. When I have good days. 

It's hard to be the girl with cancer. There's a responsibility to fill in anyone who I talk to about my health status, to reassure them that I'm doing ok. But what is ok anymore? I'm surviving. What I wouldn't give to not make it the forefront of everything. It feels like cancer is my full time job. I'm not even sure how to talk about anything other than what I'm going through anymore. To not worry about this ridiculous situation I find myself in. To be silly again without a purpose behind it. Just for the sake of being fun. I wish I could turn off my brain. The constant voice inside my head that goes a million miles per hour in every possible direction. I would give anything for the simplicity of thought that good health allows. I've been trying to make plans for the day that I get the word to return to life as I knew it. But life as I knew it doesn't exist anymore. It would be impossible to go back there. The only way to move forward is to find a new life. And how do I do that? How do I find a way to survive after this? I loved my life before this all started. I'll be starting from scratch. With nothing but my ideas and hope. But that is the seed we all started with long ago. I had gotten so comfortable in my world that I forgot that's all that any of us have in the beginning. It's what we come from. It's the base of our strength. The foundation of who we become. And as difficult as it is to go back there, it will be my salvation. My inspiration, and my light. 

I often talk to other patients when I go in for my treatment. Dressing in costume with Jennifer has been a spark of humor for everyone in there. The patients, the nurses, the doctors and the receptionists. Somehow this ridiculous behavior has become normal for people in my infusion center to see. The other patients take pictures of us and remember to laugh. Maybe we make this a little easier for them, even for a moment. I'd like to think that it creates a unity within our suffering, that our combined energies embolden each other. Every day is a struggle for cancer patients. Every day we fight to regain normalcy. In our lives, in our family's lives, and our friend's lives. It's a constant thought. Our conversation, our acknowledgement of each other, and our smiles speak of a profound understanding of what we go through together. It's like a secret handshake when our eyes meet. That we know just by being together. That we can converse without any apology or sorrow and encourage our recovery with a simple look.

I've seen beauty within this pain. There are times in the infusion center that inspire me to look and be warmed from head to toe. There is an older couple. She's lost her hair and she suffers through her treatment. She sleeps a lot. Her husband is always by her side. I watched him feed her her lunch at my last chemo session.  An example of an undying devotion and a timeless love. As difficult as it is, they love each other with respect and open eyed faith in each other. I've seen parents stand by their child's side, wide eyed with concern and a subtle, almost hidden current of worry while watching the difficult process they wish they could take away. I've watched patients stand their ground with pride and strength during this process, even if all alone. I've watched pain and suffering fill a room, but the love of life rise above it. I've seen the kind of bravery that would break you at first glance, but inspire you if you gaze long enough. It's almost more than I can take at times, but makes me embrace my pride of being human and what we are capable of. 

Then all of a sudden I realized that it's ok. 

Ok to cry and be upset.  

Ok to question everything. 

Ok to be joyful. 

Ok to dream of a cure. 

Ok to think that this might not be a happy ending. 

I'm going to feel and think and do all of it. I now know that I can without it crippling me. I've been confined by my thoughts. Restricted by worry of how I should be. I feel a bit more free allowing myself to think openly. Though it's not the ending that I'm concerned with. It's the now. The ending isn't going to be easy. No matter when. It's the beginning and the middle that makes it all worth it. The part that makes your eyes prickle with tears. That makes your heart swell. That makes your blood rush and the giggles rise. The part that makes your palms sweat in anticipation. It's about the shivers up your spine right before the goose bumps. And the warmth of happiness spread throughout your body. And don't forget the butterflies in your stomach. I love the butterflies. That's what it's all about. 

"Do a loony-goony dance 'cross the kitchen floor,

Put something silly in the world that ain't been there before."

~Shel Silverstein

A New Year

I'm at a strange place in my life. I have moments of true clarity. Of all the possibilities. It's beautiful and horrifying at the same time. I feel like I'm just around the corner from having my life back, then I have an episode and I have to rest. I'm feeling pain in my abdomen again. I don't know whether to be worried or just chalk it up to my condition. It's all part of the process I guess. A harsh reminder of what my true situation is. I dream of the day when I don't have to be careful or worry about how much time I have before I need to take a break. When I can play like I used to. When I can exercise for more than 10 minutes before I get winded. When I can have a cocktail with a friend and laugh about some ridiculous thing that happened to me or them. Because it always happens! And when I can look in the mirror and see a fit body instead of the skinny girl looking back at me. Though I can't help but think that I should get everything in order. I know what to do to get my life back together after it all fell apart, but if it stays apart, I know that there are things I must do to make sure that all is as easy as it can be. It's difficult to talk about, and I have the kind of fighting spirit that will last as long as I will. But sometimes I think about the what if. 

There was a woman in my life years ago. She made a lasting impression on me. We spoke about life and her fight. We would talk about her disease. She had lung cancer. She would come to me and we would talk and she found comfort in getting her hair done. She had the most beautiful spirit. There were many times that she was sick and asked if I would fit her in to cut her hair or sometimes just style it for her. She would come to me after her stays in the hospital. She told me that she would give anything to not have to deal with what she was going through. I was with her for a long time on her journey. Sometimes I would just sit with her and talk. I would purposely set aside extra time for her just for that. One day she asked if I would come to the house to give her a haircut. When I arrived she was in bed. She was surrounded by her family.  Her eyes fluttered open, she gazed in my direction, and she smiled. I'll never forget what she said to me. "Isn't this a sad state of affairs?" The next hour we talked as I cut and styled her hair. She smiled at me when I was done. She hugged me tight and kissed my cheek. Then turned and walked away. We both knew it would be the last time we saw each other. She died 2 days later. Her funeral was one of the most difficult things I've ever done. I think of Stephanie often these days. She never really left my thoughts over the last 10 years she's been gone. She was a fighter. And she was beautiful. I can remember her as clearly as if I had just seen her yesterday. Now I know more about her fight than I ever wanted to know. And I feel her spirit when I am weak. 

It's difficult at times to remember to be optimistic. The constant scans, the regular infestation of life saving drugs, the persistent feeling of illness. Sometimes I have to fight to remember what it was like to be the woman I was before this. I was happy with my life. Thankful for everything. Life wasn't perfect, but it was still incredible. I loved it.  Now all I wish for is to be back there. I have dreams of what my life was. I dream of what it will be again. If I only stay strong enough to get through this. But I falter. I'm going on seven months of this and I am weak. I miss the life I built for myself. This break from the harshest drug in my regimen only stands to remind me of what is out of reach right now. I am feeling better, only to get strong enough to take another set of rounds of new medication with more difficult side effects. I have another six weeks to enjoy this break. I feel like doing something ridiculous. Something that will make me feel like my life is normal. It's funny how I find that doing something unconventional will make me happy. But that is how I enjoy my life. Challenge myself to find the next set of gut busting laughter. It fuels me through everything. It combats the bad with an equal but opposite extreme of emotion. It somehow gets me through. 

Going to the beach to celebrate with friends for the week of New Year's Eve was a great decision. I didn't realize until then how difficult this whole thing has been on me emotionally. How bad I had felt. It's funny what you can get used to. As I looked towards the ocean, I felt the salt air surround me and start to work it's magic. I breathed in slowly and felt my soul relax. The gentle sound of waves lapping against the sand seemed to instantly calm my being. My eyes drank in the blue sky and bluer water, and a slow smile spread across my face. I felt like I'd come home. This was my first time in Melbourne Beach, but there was a pull there. I feel it every time I go anywhere near the water. The atmosphere was intoxicating. Being with some of my dearest friends to celebrate the new year was cleansing. It was a much needed break from my constant chemotherapy. We went out every day. And every day they made sure I was ok. I slept on the beach. If I wasn't well, we went back to the house so I could rest. When I ran out of energy, the plans changed so I could recharge. Though they made sure I never felt like I was a burden. I'm a lucky woman to have friends like this. I don't even know how to show my immense gratitude. This meant more to me than I can ever convey. And my heart is full. 

Candis, Marti, Lucy, Angel, & me.

There's something about losing yourself in laughter that's magical. We laughed for days. We sat by the fire and talked about normal things and were happy. We went to the beach all day and lit fireworks on New Year's Eve. We watched as they lit up the length of the beach as far as the eye could see by people celebrating life. We reminisced about the good times that were had and good times to come. And we didn't talk about cancer. It was everything I needed. 

Where would we be without our friends? The ones who are there for you, that believe when you don't always have the strength to. The ones who remind you to laugh when all you want to do is cry, the ones that time or distance has no effect on your relationship, the ones who are your chosen family. The ones you share your strength with, that you love so much it permeates your soul. The ones you don't ever want to think could ever leave each others side.  

As I look back on the past year I can't help but feel sorrow and loss. As I look forward I feel hope and triumph. Everything I've experienced has invoked awe. The definition of awe is "a feeling of reverential respect mixed with fear or wonder." This is exactly a true representation of my emotional existence from the day of my diagnosis to present. I have a reverential respect for the mystical actuality that is my life as I know it. There is fear that I won't actually succeed in conquering the hostile illness inside my body. There is an encompassing wonder that I actually survived the last 7 months with what my body and mind has been through. I have experienced something that I wouldn't wish on anyone. It has been torture, but also an enlightening of my spirit. Somehow, through all of the pain, fear, sorrow, and despair, I found beauty. I found my hope. I found my strength. I learned that no matter how dark things seem, there is always something to believe in. And even if the result isn't what you wanted or expected or hoped for, there is purpose. I've learned to slow down. To appreciate the simple moments. I will most likely never find a reason why this happened, but I know that I've found a new way to appreciate life. I found patience. If you wait, sometimes dreams do come true. Even if you didn't know that was what your dream was. If you observe, you'll see the incredible spirit that resides in the love of your family and friends. And sometimes in the smile of a stranger. I've embodied humility and love from the humanity that lives within the people surrounding me and I've grown to find my strength within it. I have found so much gratitude in that. It's a new year, a new time for new ideas and new action. A new era for a year of new life. And I am going to live it. No matter how long my life is beyond this, I am full. Full with hope, full of love, full of life. An eternity's supply.

Rich, Marti, Lucy, Angel, Candis, & me on NYE.


 "Life is mostly froth and bubble, but two things stand like stone: friendship in another's trials and courage in your own." ~ Princess Diana