The Best She Could Be

So in the end, we couldn’t stop the cancer from growing and it took my beautiful Naomi from us.  I guess it now falls to me, her father, to make the last entry in this blog.   Should I try to describe the pain, the longing for her, the emptiness that we feel when the memories come in, unexpectedly at times?  But no, that is the last thing she would want.   Naomi had such a love for life, a keen desire to live it to the fullest, she would not abide by tears but only laughter.  So I will not dwell on her loss but rather try to describe the wonderful person she was through the memories that we have of her.  

She certainly had her very happy, really silly side.   For instance, last Thanksgiving when we where starting to set the table and sit down, I told everyone to go change for dinner.   My wife and I put on nice clothes but Naomi couldn’t resist putting on a dragon pajamas.   We all started our family Thanksgiving meal with a laugh..

And then there was the time we went to MD Anderson in Houston for a second opinion.   She had sores in her mouth from the chemo and the doctor gave her medicine that helped to cure the sores but it left her mouth blue.   Well she walked down the hallway all through MD Anderson saying hello to everyone with a wide open blue mouth.  

I also remember a few years ago on her last overseas trip just a month before she was diagnosed with cancer, we took her to The Czech Republic, Slovenia and, Austria.   On this trip, we stayed in Vienna for three days and on one of these visited the Schonbrunn palace.  So here we were in this stately, august structure which was the home of Maria Teresa and Emperor Franz Joseph and was the seat of power for them.   Of course, that did not stop Naomi from playing with her mother on the palace grounds. She lifted her up and made sure that her brother took part in the fun as well.   This got some stares from others but that did not seem to bother her at all.

But Naomi was not all fun and games.  She had a passion to help others, she could seemingly without effort emphasize with people who were hurting and help them.   This was an uncanny gift she had and a very real part of who she was.  Sometimes she did something that was fairly small but so important to others,

• Like the time she went to the home of an autistic boy to cut his hair because he could not feel comfortable going to the salon.  

• Or the time a bunch of her friends wanted to go out in the evening but one woman was self-conscious because she had just had eye surgery and was wearing a patch.   So, Naomi had all the girls in the group make patches to wear for the night.  

• And I have had many people tell me about the times they were having hard problems and she became the sounding board for them, listening to their problems and giving helpful advice.

She worked tirelessly to raise money for the Juvenile Diabetes Research Fund (JDRF), her signature charity.  For three consecutive years, she put on a fund raiser she titled “Art is in the blood”, signing sponsors, securing the venue and refreshments to put on a memorable night that raised significant donations for JDRF. 

Much has been said about the costumes she wore to chemo, indeed many of the pictures in her blog show her in these costumes.   While these costumes helped her face the bi-weekly drudgery of chemo, it was much more.   It made her smile, but even more so, it brought a smile and laughter to the faces of the other patients and the nurses.   She did not just wear a costume, then go to her seat and get her injections, oh no, she went to each patient, gave them a smile and a rose.   Or a balloon.  Or a little trinket.   It really didn’t matter what she gave, what mattered was the reaction of others, the smiles and laughter.  A nurse once told me that a patient had asked that her chemo always be scheduled when “that girl with the costume” came.   You see, it was not enough that Naomi felt better, she had to do whatever was possible so that all felt the laughter and it lightened their hearts.

It should always be remembered that cancer did not define Naomi, but it did give her the opportunity to touch so many others.    

It is hard to imagine a world without Naomi, without her laughter, her humor, her joy of life.  I will have to go on without Naomi commenting on all the things I do wrong in a lost effort to correct me. Will no longer hear of the good and the bad in her life, what she loved and how she dealt with the issues that life presents.  There will be no more travel to see her friends in Florida, Wisconsin and elsewhere.   I will have to take some comfort in the fact that Naomi left her mother and I with so many wonderful friends who share this loss.   I know the tears that flow as I write this will stop someday, I know that time will dull the pain.  Just as much as I know that Naomi will continue to live in my heart, in her mother’s and in all those people whose life she has touched and made just a little easier. 

"Sail on silver girl, sail on by"

"Your time has come to shine, all your dreams are on their way"

"See how they shine"

                                   -  Paul Simon

"Where are you going, my little one, little one,
  Where are you going, my baby, my own?"

                                -  Harry Belafonte, Malvina Reynolds and Alan Greene

In the coming months, her blog will be published as a book to help raise money for JDRF.  If anyone wants more information or to reserve a copy, please send me an e-mail at hals88@gmail.com.

Lucky

It's been a while since I've written. Writing has always been an escape for me, but having been in the hospital on 3 separate occasions of 8 days each, messed me up a bit. I only had a few days in between each stay. I needed to recover from so much time there. My existence is a constant battle for" quality of life". It makes me wonder what that means anymore. When I try to deal with this cancer, I've always talked about how I've got good days and bad ones. I really live for the good days. But when I'm actually in the bad days, I try to live for the future or the memory of the good ones. The times when the pain and nausea aren't present. And when I've got good days, I live in the present. It's how I live for beauty and truthful life. So sure, there are times to live for things other than the present, but this is my formula for living right for me. I deny the cause for feeling depressed. I deny the pain and feeling sick. After my hospital stays, I realized what my coping mechanisms were. I do my best to forget what I go through. I put myself into the moments that are pure and beautiful. 

Grinch Christmas chemo

Rock bottom. I never thought I'd reach it. I'm always too busy having fun. Figuring out how to concentrate on the good in my life. But my rock bottom happened after my 24 days in the hospital, which took some time to recover from. The time I was in the hospital they did an upper endoscopy. They found severe esophagitis. It started with open sores in my mouth and all the way down my esophagus. These sores also got into my duodenum. Not to mention the pancreatitis and constant nausea and vomiting. My body was wracked with pain. When I got out, I saw Dr. El Reyes. He said that my body was acting this way because I’ve I been on chemo drugs for so long. I needed a break. He started me on the Vectibex, which was supposed to keep the cancer from spreading, and suspended the chemo cocktail.

In the past, my skin was smooth. I used good skin care lotion and always an SPF of 30-50 depending on what the sun was like and what part of my body I was trying to protect. I would tan easily and my skin was smooth. Thanks to my mother's gorgeous Korean skin, I had it easy taking care of my own. I thought that as I grew older I would get more treatments to ensure I would grow old gracefully, but now I wonder if my skin would ever feel good again. Now it's covered in what feels like tiny blisters and lots of small scabs. My skin is covered in a rash that they warned me about when I started the Vectibex. It's all over my face, neck, and chest. The hair of my eyebrows are brittle and dry. They’ve broken off close to my skin so it looks very sparse. It's painful and unsightly. Everyone at the infusion center who saw it got excited and said it was great. They encouraged me by saying that it means it’s working. Forgive me if I don't get happy about the appearance of this new side effect. It's ugly and hurts. While the other side effects that made themselves known were hidden from sight, this one was icing on a cake that I wanted nothing to do with. 

We live when we stay in blissful ignorance of our own mortality. It is amazing to only look at the wonders that exist as we fulfill the dream of happiness and laughter. But I've lived my life as well as I can. And somehow I find my laughter gurgle up in between the sorrowful moments of knowing that there will be loss one day. It's taken me a while to figure out how to allow happiness to stay with me. My life is constant chemo, pain and nausea drugs, doctor’s appointments, hospital stays. I never wonder why I don't give up though. Even a few smiles in between all of the things I go through make me want my life.

Mike and Keiran planned a benefit for me at The Music Room. I haven't smiled and laughed like that in a bit. I felt every bit of love. I've missed my friends, the ability to go out. Mike took me aside and he explained that he wanted me to feel the love. That I have been fighting so hard that he knew it must be getting difficult. And it has. I miss normal in a way that I could never truly convey and I would never want anyone to really understand. That night I looked at every face, truly felt every hug, and cancer wasn't the star of the show. Friendship and family were. Music was. Laughter was. And truth.

Stranger Things chemo

There are many truths in life. In any given moment, we can choose to give attention to any of the innumerable truths available to us. But this night the truth was love and life. It was like an electric current. It made my skin cover itself in goose bumps. Everywhere I turned was a smile. So much love. And I will cherish it . I hope that this feeling, this vibe will live past me. That somehow one day it will be talked about and bring back memories. And someone will say, "remember that night?" Or "it was so great to celebrate that night." There was so much laughter. When I had to leave because i my energy level was almost gone, I had a crew of people concerned that I needed to take uber. My beautiful, intoxicated friends worried about sober me. Again. So much love. Every time I hugged someone, it was like I could take that moment and file it away in my memories for later on. And I have.

Some might feel sorrow for my plight. And though I could lose myself in that, I won't. Instead, I'm going to spend my time considering myself lucky. My blessings are instead hidden behind this thing called cancer and all these trials. But to be able to recognize the good things in my life may just mean that i have so much it is condensed into the years I've had. I may only have a shortened life left, but maybe there will be some drug to lengthen it. Too many what ifs to pay attention to. Instead I concentrate on the concrete. Which is how incredible my life really is. It's filled with hope and beauty. And my eyes wide open. I know the possibilities. It's just much easier to revisit the ethereal friendships I somehow am lucky enough to have.  

"Courage is grace under pressure" ~ Ernest Hemingway

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Busy

There's never been anything about this journey that's been easy. Though at times I pretend that there are things that are. If I make things easy in my mind then sometimes they are. Though this last bit was impossible. There was nothing that could make me see things as anything other than what they were. No matter how I tried.

I thought I‘d get used to every medical situation I’ve had to go through. But you don’t get used to this. I don't know how many ambulances you have to ride in before you get used to it. Since this started, I think I've ridden in three. It always sucks. This is no exception. I had started to go back to my salon to try and work on occasion.  Chaz has been amazing in accommodating this. One haircut here, a color there. It made me feel like I was worth something. That I could be creative. I miss my career more than I ever thought I would. I love my co-workers and my clients. The daily rapport is something I truly crave. This day I pushed myself too hard. And I paid for it. I went in and felt awful. In the middle of doing a color I had to excuse myself. I ran to the bathroom and the door was locked. I ran to the back and had no choice but to throw up in a trash can. You know you’ve reached some level of “is this really my life?” when you’ve done that. Ugh. I don’t recommend it. My co-workers were amazing. Amber graciously finished my color for me while Chaz found a place for me to lie down while I writhed in pain. Vanessa called my family and the ambulance while Chaz sat quietly by my side to wait. I came in and out of consciousness during this time, but I always felt these amazing people around me, caring for me.

Avoid the Noid chemo

They both arrived within minutes of each other. The embarrassment of being carried out on a stretcher from work was horrifying after I had some time to think about it. But it took a while. I don't remember much about the ride. I finally got into the emergency room, then into a hospital room. The first few days I was sleeping under the influence of heavy pain and nausea meds. When I finally woke up it was a couple days later. I ended up staying for eight days. This was only a few days after my last eight day hospital stay. They did an upper endoscopy and discovered that I had the most severe case of esophagitis possible. This was causing the unrelenting pain and vomiting. I had open sores all over my mouth that lead down my throat. I couldn't eat from the pain so I slept and stayed on heavy pain killers. After eight days I finally was released and went to see my oncologist. Total time that I was out of commission in the hospital and bedridden was about 5 weeks. When I finally was about to start trying to gain my strength back I was 20 pounds lighter, very weak, and couldn't do much. I had no fat on my body and any muscle I had left was gone. I was skin and bone.

Even the hospital knew I was a klutz! 

Being in the hospital for 16 days over 2 separate occasions changed everything. I didn't realize how badly it had affected me until it was too late. My optimistic attitude disappeared. Depression that I didn't know existed creeped its way into my system and laid its hooks into me deep. Fear and Loss of hope curved it’s way like an evil curse into my psyche like I never knew it could. I thought I could get control of this. I thought I could do this and fight through it and be strong. But I falter. Even the most infallible need help sometimes. I was breaking after a year and a half of this torture. And it is torture. I never thought of myself as anything overly special. I was a normal woman with a happy life. But things happen to your strength of thought when pain invades every single day. When who you thought you were is no longer looking back at you in a mirror. The confidence that was always a casual but constant companion no longer shows its face and loss is all that shows itself. How do you find it again? And where do you go to get hold of it again?

The new drug was working. My doctor can tell because of the rash that reared its ugly head. He was excited about it. I was used to good skin. I could count on it, but it's gone. It's hard to get excited about dry cracking skin with bumpy blisters across your face and chest. It's supposed to be a sign of success. That it was working. How much poison can I take? This was a sign of success? But it's killing me. Slowly, bit by bit I was losing. I felt like letting go. I felt like giving in. The pain, the nausea, my physical existence was nothing that I ever knew myself to be. I hated the medication as badly as the illness. And I didn't want to know this stranger masquerading as me any more. Sixteen days in hospitals. This time. About a month weak, aching, depleted, and bedridden. Skinnier than I've ever been.  

I'm so tired. I'm not sure how long I'll last. It feels like giving up, letting go. This time at the hospital, I felt so bad that gave myself permission to let go. I gave in. Right then it would be ok to say goodbye. It felt like death would be a warm welcome compared to the life I was living. Where everything was dark, painful, and full of sorrow. I don't want to die. But sometimes it feels like it's nearby. And it feels comfortable. Strange. For a time that I couldn't determine. I waited and thought that I no longer could survive this. It was dark. And strangely it was the saddest form of peace that I've ever experienced. I began to wait for the beginning of the end. It was the first time I've ever let go of hope.

"Without music, life would be a mistake" Friedrich Nietzsche

And then one day I woke up from my ridiculous pity party and got mad. I was disgusted with myself as I came to my senses. I had let go of who I was to become something I wasn't. All I needed to do now was change my mind. It as as simple as that. So I did. Luckily I’d had a trip planned for months to visit Marti and Rich. Perfect timing. I forced myself to find the strength to go. I scheduled wheelchairs through the airport to the plane and off. It was hard. 20 pounds too skinny with no muscle tone and on the verge of tears constantly. It’s amazing how kind people are when you're bald, skinny, and in a wheelchair. It gave me strength. That little bit of kindness can help more than you'd ever know. Rich picked me up from the airport and Marti had rented a wheelchair for me for the week. We went to see Chris Stapleton that night. I felt the apprehension of being in a wheelchair during a concert. I even tried to get out of it. Thinking that maybe I could do this without it. Marti gently reminded me that I might need it. Honestly, There was no way I would have made it without that chair. And the kindness continued. As Rich pushed me through the crowd, it parted ways for us. Then security picked us out of the crowd and got us around the lines quickly and passed everyone up. Then true to form, my amazing friends and music helped me find myself again and laugh and heal. Marti looked at me and said, "It's just a bump in the road." It made sense. And for the first time in a while, I again decided it was time to beat this thing. 

In the time I was out of commission, I missed a chemo, which I was ok with, but the 3 concerts I missed I’m still bummed out about. My Friend Rachel had planned a trip for us to San Diego and I was stuck in a hospital bed. Another amazing thing I was too sick to be able to take part in. Rachel was so incredible that the plans didn’t matter. She only wanted me to get better. She assured me that we would go another time. Fei Fei actually got James Murphy from LCD Soundsystem(OH MY GOD!!!!) to record a video telling me he hoped I was getting better and Mike and Kieran got Mark Farina(WHAT???) to do the same.  What have I done in my life to deserve the amazing friends I’ve got? Even with all of the tough times I go through, it’s not lost on me that my life is still amazing. And it’s because of the people that fill it.

Our minds are powerful. We can decide our fate. I refuse my initial fate and am deciding to live. The way I want to. And to cleanse my body. I refuse this illness. I'm going to heal. I'm going to refuse cancer. It's left my bones. Next it’s going to leave my lungs, then my liver, then my colon. I'm going to win. I've got too many good friends, family, and good times to enjoy. Don’t get me wrong. Climbing out of this hole of illness is going be tough, but it’s taken a while for me to get this way, It’s going take a while to build myself up again. I tried to go on a walk the other day. I walked a half mile. This would’ve been a nice stroll in the past, but this day it was Mount Everest. But I did it. And every time I do it again, it’ll get better. Anything worthwhile is worth it. And this is worth it. I will get strong again.

 I’m going get busy living.

"I guess it comes down to a simple choice really. Get busy living, or get busy dying." 

~Andy Dufresne  'The Shawshank Redemption'

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Lemonade

“How do you do that?” He asked.

“Do what?” I was confused.

“Make lemonade out of lemons?”

It seemed like such a strange thing to say that it took a minute for me to register it.

It didn't feel like I was making anything into anything else. I know that my entire life has been driven by creativity, and no illness, no matter how dire, would ever take that away from me. I know that being creative always takes me to a sacred place. A place that could never be tainted by pain, sorrow, or hardship. When I create, I am safe. It is a place where all of me stands as I always was. Not broken or weak. Not partial or faded. Not sick. It is the safest place for who I am, because it will always be all of me. No matter how I feel or look or am physically. It is where I am whole. So when I am only a shell of the person I was, I escape to creativity and I find myself there. The pieces that are missing find their way back to me. The broken bits that have fallen off as I fight this horror. I remember the things that exist in this world that chemo and cancer can’t take from me. And that is beauty. The beauty I create and enable. That is untouchable. That is the core of who I am, my happiness, and who will remain. No matter how broken I become.

I was doing well. I hadn't really felt much pain in months. I ended up skipping one chemo to just take a break. Then all hell broke loose. I began to feel pain chronically in my lower abdomen again. Where my tumor is. It wasn't going away. Then another pain made itself known. It was incredible. It was at my stomach. High in my abdomen. It was so intense that I could do nothing but cry and wail in response, curled up in a ball. My father wanted to take me to the emergency room and I fought him. I knew what the ER meant. It meant hours of waiting. It meant tests, it meant exhaustive questions and hours of being a pin cushion. It meant blood draws. And days, maybe weeks of bruises, weird tell tale signs, and evidentiary marks on my body. It could also mean relief. When I finally relented, the pain became much milder. We had actually made it to the ER when the pain subsided. So we went home. I woke the next day to more of the mammoth pain from the night before. I called my oncologist to ask for advice. I was told to go into the infusion center for help. He recommended that I do so before going back to the ER. They took me to a room in the back and accessed my port. They gave me IV pain meds, but when my blood pressure reached 220 over 121 they called the emergency to bring a gurney. I was admitted to hospital after they brought my blood pressure down to some semblance of normal. They wanted to make sure I wasn't having a stroke or stomach ulcers. Which meant a bunch of tests. A CT scan, stomach x-ray, an ultrasound of my abdomen, an upper endoscopy, and a biopsy of my stomach. They found nothing. I stayed that time from Tuesday to Thursday. I was released Thursday night around 9:00 pm. I went into see Dr. El Rayes the next morning. He said since the tests that were performed found nothing, he could only logically assume that it was the cancer causing all the pain.

I had to let that information marinate a bit. That my cancer was causing pain even though there was no sign of cancer in that area. My body was so out of whack that there was pain for no reason. This cancer is a beast. I went back home and within hours of eating, the agony had come back. I went back to the ER where they stabilized me again and were going to release me, but my dad refused. He told them they needed to admit me. Which they did. I was there for another 5 days. So they could control my pain and vomiting. They did more tests and found nothing. But then I got pneumonia. Another setback. I couldn't get chemo until it was gone. So I got sent home with antibiotics. When those were finished, I finally was well enough. I knew getting chemo would help fight the pain. So I got prepared and hoped for the best.

I started my new chemotherapy drug. I had thought about it and realized that a six week break from chemo was not going to be beneficial moving forward. I was right. It was horrible. I'm in constant pain. Though it’s a different one than the one that took me to the ER and into the hospital for days. So I guess it’s good that the stomach pain is gone. I can't eat. When I do, I vomit uncontrollably. I'm persistently nauseous. I don't know how to exist feeling this way. I wonder if this is normal. I wonder if this is killing me. I wonder if I can do this. Be strong. I keep telling myself that. But I don't know if I can. This constant ruination is brutal. It's getting to the point that I can at times compartmentalize my emotion. If I can be objective about the pain and nausea, then I can be more affective in dealing with it. If only I could do that all the time. I keep wanting to forget that this disease wants to destroy me. Maybe if I don't pay attention to that part then it won't be true.

I think about the things I had heard about cancer before I had it. No one ever said that it hurt. You always heard things like 'so and so passed surrounded by family' or 'so and so was brave and fighting'. How come I never heard anyone say how much it hurts? Why isn’t that part spoken about? It’s such a weird thing to realize. What is it? Is it because the picture would be too difficult to see? What are we protecting by downplaying that very important fact? Cancer hurts so bad that it tests the very fiber of your being. It asks how important living is to you that you would endure the worst pain of your life for more time to live. Have you ever thought that about cancer? Not very pretty is it.

I found myself at the ER again about a week after this new chemo. I couldn’t stop vomiting, it had been 4 days of this, and I knew if I couldn’t stop that I would get dehydrated. I was alone at my condo in town at night. So I picked myself up and took myself to the ER. It was all I could do to get myself there. The stress of going was playing out as a full blown panic attack. As I signed in through my tears, I tried desperately to find some control of my emotions. The woman at the desk changed my life. She handed me tissues and said gently, “It’s going to be ok. Stop crying. You’re beautiful. You’re going to get the help you need now. “ They were the kindest words I’d ever heard. After doing a chest x-ray and an EKG, they got me back into a room fairly quickly. Once the ER doctor got to my room he asked me what I thought I needed. I told him fluids and anti nausea meds. He had seen my chart. He said that after being a cancer patient as long as I had, he thought I would probably know what I needed. He gave me what I asked for and discharged me. It was the easiest ER visit I’d ever had. I was so relieved. As I left I realized that this would not be the last ER visit or hospital stay. It was a sobering thought. But now that I’d come to terms with the fact that ER visits and hospital stays would be a way of life for me, it wasn’t so scary. Now it had become a tool to manage my curse.

The hardest part of all of this is not the incredible physical pain or the intense nausea. Or the loss of independence, my career, my life as I know it. It’s not the sleepless nights, the energy I used to have, or watching my body transform into something unknown. It's watching what it's doing to my family. Seeing my mother desperately trying to feed me. Because to her food is the great healer and cooking and gardening is what she does best. Watching my father trying to fix the unfixable. Seeing him organize my bills and talking almost daily to the hospitals and trying to make sure I travel so I can escape my brutal truth. Knowing my brother is trying to be there for me from so far away when there isn't anything more that he can do. My entire family is being torn into emotional shreds over something we have no power to change. We love each other so much and as much as it is our strength, that love is pain. A family's love cannot kill cancer, but neither could cancer ever kill a family's love.

I want my life back. I don't want to do this anymore. But I don't have a choice about that. All I have is what lies before me. And what I do have a choice about is this: I can feel sorry for myself, or I can rise. And there is no shame in the times that I fail to rise. Because when I fail, I still learn. And it hurts. Deeply. But I learn. These lessons teach me about what really matters. And what I’m really made of. And somehow I rise anyway. Then it tells me all sides. The ugly, the beautiful, the difficult, the reality. I get to see it all. And in the strangest way I’m ok with my path. Because I do find a way to make lemonade. I find the sweet to complement the sour. And in the end, if you don't make lemonade, all you've got left is lemons. And who only wants lemons?




"You either get bitter or you get better. It's that simple.You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you." ~Josh Shipp

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Mindset

I keep hearing, "everything happens for a reason." I don't believe that. I think it's something that people say to make themselves feel better about "everything". I think some things happen for a reason. That a series of events will lead up to a certain outcome. But if we say that "everything happens for a reason," I feel that it takes the meaning away from it. It takes the power of owning it away from you. If it happens for a reason, then you can assign responsibility. "God made it happen" or "I suffer so others may not."  That doesn’t make sense to me. Sometimes things are just what they are. Maybe that's what those who say that want or believe. That "God has a plan" or what comes from it was what was really "meant to be." I think things happen because they happen. I think we can find a way to turn a bad thing into a good thing and that we can learn from things that happen. Sometimes assigning meaning to an event makes it understandable. I get that. Sometimes, there is no understanding it. I don't understand why I have to suffer. Or why anyone who has cancer has to go through what we have to go through. Or why cancer has to exist at all. I need to spend my energy handling what happens, not wondering the source of why it happens.  All I know is that I have to get through this. That there are more important things than suffering, pain, nausea, and sorrow.

My CEA numbers are getting high again. They're over 100. When I was diagnosed they were 421. At one point they had gotten down to 9. This cancer is active. This war inside my body continues and the ebb and flow of it feels like it's destroying me. Some days I feel like it's all going to be ok. And others, well...

Some days I feel like I need to get my affairs in order. Currently, I think a tsunami of craziness is about to wash over me. I'm being prepped for a clinical trial. I was told that at my last appointment and the upcoming CT scan with MRIs of my pelvis and abdomen are proof of it. Dr. El Rayes has never ordered all of that together before. Maybe my miracle is coming. Maybe we're grasping at straws now. The uncertainty is brutal. If only there were an easy fix. But there's nothing easy about this. I don't think there ever was anything easy in handling this. Every moment, every change, every drug, every doctor's appointment, every choice. It's all so difficult. And so important. I get so tired of it all. I wish I had the carefree days I used to have. When living was simple. When life wasn't so serious. So I inject all the fun I can into it. I engage in my creativity. I find laughter. I share smiles. I find the beauty in it. This is what I lived for before. This is what I have always lived for. It's worth every painful, scary, uncertain moment. Because this is the constant in my life. This is what it's all about.

I went in for my CT and MRIs. I had to change into a hospital gown and remove all jewelry. They started an IV so they could inject contrast. I first went in for the CT which took only a few minutes, Then to the abdomen and pelvic MRIs. They strapped me down to the table after covering my chest with something protective, then a blanket, put ear plugs in my ears, and a button in my hand to get their attention if I needed them. MRIs are loud and I’m stuffed into a small tube. Every couple minutes the tech is telling you to take a breath, hold your breath, then breathe.  This lasted for about an hour and a half. I know I’ve gotten used to all of the testing because I almost fell asleep during my MRI. I guess that tells me that my level of self control is at an all time high.

Iconic Madonna chemo

The next week I went in for chemo and it was fun! The amazing ladies that accompanied me were right there with my craziness. It seems that the more I do this, the more people want to get involved. Then more patients get involved. It's like the people in the infusion center remember that they know how to laugh. I remember in the beginning that even though I was dressing up, there was a nervousness about it. I'm not sure if it was from going to chemo or just the weirdness of dressing up in costume on a normal day. But I guess there's no such thing as normal in a cancer survivor's life. These days it's turned into looking forward to it because of the laughter that surpasses the pain and illness. I don't think I could've ever gotten through the beginning uncertainty so well had Jennifer not been there. She helped me find my courage to be ridiculous. She encouraged my creativity and took part in it with great fervor. She has helped me laugh through it all and continues to be a shining example of true friendship. She helps to show others that those of us plagued with cancer are approachable. Everyone who has joined me at chemo is also doing that. And I'm proud to call the people around me my friends. They are my family. It's a gorgeous example of the love surrounding me. And the love that we share with anyone who witnesses it.

We settled in to wait for my labs to come back after we passed out flowers and treats. After an hour they called me back to inform me that they wouldn't be able to treat me that day. My creatinine levels were too high and my red blood cell count was too low. My kidneys were taking a beating from my high creatinine levels and they were afraid of damaging them. My body needed a break. I would get a blood transfusion instead. This would help strengthen me. I couldn't help but think about what that meant. I asked my nurse if that was bad. She said no, that most people who had been on chemo as long as I have needed to get blood. It drove home the fact that I'm sick. I keep forgetting that part. Even though I know I have cancer, I don't identify myself as a sick person. I realized that recently. I feel like everything I go through on a daily basis having to do with cancer is fleeting and that what really lasts for me is the good stuff. Every time I get news about my illness, it's always a little bit of a shock. I guess that's a good thing. I can really live in the moments that I forget about having this horrible disease.

After my CT and MRIs, I learned that my cancer has grown. Not in number, but in size. Mostly minimally, only a few millimeters. But a few were alarming to me. One lesion in particular had grown 1.5 centimeters. They say it's mostly stable. They weren't too worried about it. But it means it's time to change drugs. My creatinine levels were so high that it excluded me from any clinical trials at this time. This was a disappointment as well as a sigh of relief. A disappointment because I wasn't doing as well as I could be and a relief because a trial is exactly that. A trial. There isn't enough known about it to know what it will do. Or won’t do.

When Dr. El Rayes walked in the room at my next appoinment, he said, "I have good news." This was the first time I had ever heard him say that. I knew not to get too excited. I've become very cautious about getting riled up about anything medical the first time I hear it. He had found that with my genetic testing, there were three areas that had no mutations. This meant that there was a drug that worked well with these findings. That there was a great response to it. He was going to replace the drug that made my creatinine levels skyrocket with this new drug. It looks very promising. But I am resigned to my skepticism. Getting too invested in the thought that it will work is often stressful. I'd rather be surprised than disappointed. And so it goes. I am scheduled to start my new chemo cocktail on Tuesday. With all of the new possible side effects. I felt like I was in a drug commercial when they were explaining all of them to me. "Side effects may include..." blah, blah, blah. The only ones I remember is a red bumpy rash across my face, neck, and chest, skin photosensitivity, and adverse nail reactions. Great. I'd rather have nausea. My body is screaming for reprieve. And I am emboldened in stoicism. I will do this. I have no choice. Going through the kind of pain I experienced in the beginning isn't an option. Though I fear one day I will. And I know what comes after the pain. So I will exhaust every possible option. And hope beyond hope that at some point there will be a miracle.

I don’t let my thoughts get away from me. Every time I have in the past, it spurs an emotional reaction. I then have a problem absorbing information. I’ve learned patience and greater understanding in the past 15 months. Life isn’t what I had pictured it for me. But when is it ever? I dreamed of something different, something lovely. I dreamed of growing old and fighting aging gracefully. I dreamed of living on the beach and drinking piña coladas, rum runners, and dark and stormys whenever I felt like it. I pictured finding the love of my life and going to concerts together. Even when it would’ve been considered that we would be too old for it. Now I just want to get to the point where I don’t have to go to chemo every other week. That might be enough. That is what I concentrate on now. I envision it. I pray for it. I fight for it. If I could tell anyone out there one thing that I could get people to understand, it would be to not take your life for granted. Change your mindset. Appreciate the good stuff. Don’t lose your lust for life. No matter what you go through. It is the lifeblood of determination and accomplishment. It is the most real thing we have and only allowed in our lives if we let it in.



"However mean your life is, meet it and live it; do not shun it and call it hard names. It is not so bad as you are. It looks poorest when you are richest.The fault-finder will find faults even in paradise. Love your life, poor as it is. You may perhaps have some pleasant, thrilling, glorious hours, even in a poorhouse." ~ Henry David Thoreau

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Insight

There are times that I sit in my condo quietly thinking about, pretending, that it's a normal Sunday. That I'm just resting to prep for a long work week ahead. That in a few more weeks I'll be going somewhere crazy like the alps in Europe to go paragliding. Or go hiking in Colorado, or camping in Montana. I dream about the day that I'll be strong enough to actually achieve these dreams. But in the mean time I stave off the intense nausea and just try to make it to the next minute without puking. Or try to ignore the pounding headaches that come intermittently. I go in for IV fluids regularly. This usually makes me feel a lot better. But in the meantime this immense discomfort is my life as I know it. It’s hard not to make this emotional. My physical being often translates into an emotional reaction. I get upset. I cry. Then I try to calm myself. Sometimes the only reprieve is sleep. So I drug myself into dreamless oblivion. But I always wake up. Most of the time right back into the same uncomfortable state I was in before. But at least I get a break. And there are the few times that I feel better when I wake. There's always that.

Just when I think I've got my feelings in check, the fear creeps up on me. Barely there, so I don't know it even has a presence. Then slowly, bit by bit, it rears its ugly head. It takes everything I've got to keep it from going full crazy, but I do it. This time I felt it come on when I was told I needed to go on blood pressure medication,  that I was getting a blood transfusion, and that there are some clinical trials they're keeping in mind for me. It all means that the clock is ticking. My body is wearing down so it needs more help and the options for healing me are now in an experimental phase. Scary and hopeful at the same time. It's what comes next when it's all they can do. The way I see it, I'm on borrowed time anyway. I've had longer than was expected, so I should be thankful. And I am. But it doesn't shut out the want and need for a bit of peace of mind. If only...

I don't need to be told that this is what it means. It’s easy enough to figure out. But I also know that Dr. El Rayes is going to bat for me. He's got my best interests in mind. It's him, his PA, and his nurses that keep their eyes on my well-being by constantly making sure my nausea is in check and that I’m getting plenty of fluids. That the side effects are under control. Even when I’m not complaining about them. They know to check on me because of the staff that look after me. They even did more tests and discovered that my body was starting to make more blood, so the transfusion was unnecessary. He took my case to the tumor board twice to discuss my possible treatment. It is comprised of some of the leading  oncologists and surgeons at Emory. This board meets once a week to discuss 10 cases. He felt mine was important enough to discuss twice. Out of all the people getting treatment in one of the best cancer centers in the country, mine was a case he chose to share with his colleagues. I am humbled and have an incredible respect for these people. And I have tremendous gratitude for it.

I long for the days where the anonymity of good health gave me ease of spirit. Living on the edge of this microcosm of pseudo celebrity due to how public I've been with having cancer has mostly been a blessing. But I wish there was some way to turn off the attention sometimes. I find that people mean well. They only want to be supportive, but I think I speak for most of us dealing with this disease when I say that sometimes a normal conversation is a welcome minutes long vacation from the life we are currently living. I go out every once in a great while when I feel good enough to do so. When I long for social interaction.  

Raising Arizona chemo

I began this blog because it was too much to tell my story to people over and over. I needed a way to tell people one time without telling the story repeatedly. It’s been good for that. It then evolved into helping others understand what people in my position go through. Those of us who are fighting against cancer invading our body and permeating our thoughts. I realized as I continued to write, that people were actually listening, that they wanted to know more about cancer.  About what we go through and how their actions affect those of us dealing with it. I feel at this point that it's my duty to let you know things about cancer that you wouldn't normally know.  Things that all of us have been in the dark about.  Those of us who didn't know enough about how bad that this disease really is and how widespread it is, are open to the knowledge.

I'd like to tell you about cancer language. How it influences us. The things that you say and what they mean. The disease is hard enough, so let me tell you how to speak to me or anyone dealing with this illness and what kind of reaction it invokes. At least within me. Because the things that you say and do affect us.

There are times that I feel burdened with the responsibility of making others feel comfortable that I am sick. Please don't tell me how difficult it is for you. However difficult it is for you, it’s a lot worse for me. When you go on with this type of talk, it can be stressful. This is not something that I am good at. Not for myself anyway.  Maybe for those that I'm comforting.  This can be very taxing to do repeatedly. I appreciate  that you have feelings about the subject, but I’m not sure how I can make this better for you without making it hard on me. If you feel this way, maybe offer me a hug or let me know if I need anything, you’re happy to help.  I have a tough time trying to make you feel better about my illness.

Please don't ask me if I'm OK. We both know I'm not. I have Stage IV colon cancer and have chemo every two weeks. I have good moments. If I look like I’m doing ok, then I am at the moment.  If I’m not, I have the wherewithal to remove myself, or ask for help.  The incessant questioning only makes me feel distanced from the normal life I so long for and only touch upon on occasion. A prolonged "How ARE you?" with an overly concerned stare falls in the same category.

Please don't tell me about every person that you or anyone you know, that has died from cancer. This is not a good topic to engage in with me or anyone else with a cancer diagnosis. I don’t know how to respond to it and it really makes me feel like you look at me like I’m a walking corpse.

Please don't tell me about every treatment that every other person with cancer has gone through. Every cancer is different and is treated as such. It’s based on type of cancer, what stage it’s in, genetic testing, what the individual is capable of handling, and more. I have been going through this since June 15, 2016. I have and am continuing to explore every option. If you think a certain treatment is worth me looking into, feel free to send me a link or article. I’d love to read up on it.

Don't look at me with pity. I can see it in your eyes. It’s one of my biggest pet peeves.  It’s a sure fire way to create distance between you and me.

If I'm out trying to have a good time, don't go into a long diatribe about how I should be handling this. For example - my diet, alternative treatment, the drugs I need. I'm trying to escape it. Even if just for a night. Tell me you'd like to talk about it with me another time. I'll be happy to discuss it with you when I'm not at a party, at a concert, or being social.

Do smile at me. I promise I’ll smile back. I love that.

Joke around – it’s ok. I like to laugh. I’m sarcastic and I love a good sense of humor.

Hug me. Not excessively or dramatically, but like you would anyone else. I remember what it’s like to see my people and say hello or goodbye with a hug. I promise you can’t catch what I’ve got.

It’s ok to give a kind word about it. Just don't go on and on. My cancer is not about you.  I will shut down and be thinking about how to get away from you.

What I’m saying is that I'm still the same person despite having cancer and everything that goes with it. I never expected that it would become what it has with the way that I’ve chosen to cope with this. I choose to be open about the journey to help you and me understand it. Don't get me wrong, I expect some conversations about it. It's often sweet and I am moved by the concern and support. It gives me strength to keep being strong mentally, when I can’t be physically. Everything that I endure puts a strain on me. So for the first time since this has invaded my life, I’m asking for your help to get through this and help others with cancer get through it with a better way of communicating. There's a way to speak to those of us dealing with this. It's with encouragement. Or normalcy. Look at us as the friend we are. The friend you used to see us as. Not the person with cancer. We will respond to you in turn, a better way. Though we suffer, we are not the disease that plagues us.

My hope is that through more dialogue that we can ease the burden that cancer causes in everyone touched by it. Including those of us that have it and those that love someone with it. That when I give the details of the treatment that I go through and the emotion that is triggered with my experiences, that you will have a bird’s eye view of what it is like. That it somehow gives enough insight to stimulate compassion for each other. We humans are capable of some incredible moments of beauty. I see it every day. Sometimes we need encouragement to understand the right way to treat each other. I welcome it, I believe if we give each other the right direction, our worlds will fill with more honesty, ease of mind, and love. I think we could all use more of that.

The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering. ~ Ben Okri

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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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