Cognition

It finally hit me today that it's really working. After 6 long months. All of the pain, the nausea, the struggle, and the heartache is finally paying off. I understand that as a realist, I wouldn't allow myself to think any further than where I was at the moment. I couldn't speculate on the possibility of actually succeeding because if I allowed myself that and it wasn't true, than I would be a failure. I couldn't take that thought. It would completely destroy me. All I could do was keep trudging through my own private hell. And put on the brave face. And laugh. Because laughter has saved me. When I wanted to give up, I just found something to laugh at and someone to laugh with. I shared it with whoever would join me. I found something to believe in. And that was the people that were enduring their own version of hell at the infusion center with me. If I could make them laugh, or even smile for a moment, then my struggle wasn't so bad. I believed in them and they gave me strength. And then I felt like this life of mine had some purpose. That maybe there really was a way to make this pile of manure into a bed of roses.

My last chemo was beautiful. It was fun and happy. Going into chemo is tough. My body knows. Each time I go in my heart rate goes up so high that I have to take blood pressure medication. Every other day my blood pressure is normal to low. I can't psyche my body out, but I can make my attitude positive and I can make it through. I gave small presents to the other patients. There was laughter and lots of smiles.  People kept coming up to me and thanking me for bringing joy to everyone. And my heart swelled. My smile was huge that day. Knowing we could share this experience and know it's horrible but could still enjoy ourselves. I can't help but think that what I'm going through is helping me find something greater. That this agony will somehow show me it has a purpose. I'm 6 months in. I knew it would be 9-12 months of chemo before I could have some semblance of a normal life again. I'm halfway through. And I see a glimmer of light at the end of this dark and treacherous tunnel. I'm so much stronger than I was. So much more hopeful. And so adamant that this is just a phase in my life. It's really strange to lose that amount of time. But I'm curious to learn what I'll find after it. 

I recognize that my approach is a bit nontraditional. But reality is really tough.  Focusing on the pain or the medical, sterile truth all the time is incredibly stressful. So I choose to focus on the fun parts of life. The parts that matter.  Like being silly and dowsing people in joy. Living in positive energy and encouraging happiness. Because there's nothing happy about a stage 4 diagnosis, or constant pain and nausea, or the thought that this fight isn't just about not feeling good, but really about not losing your life. I know more than I ever wanted to know about what it takes to survive. Now that I have that information, I'm going to use it. I'm going to share it and I'm going to live bigger than I ever thought I could and more grand than I ever thought to dream. Because if I can go into chemo wearing a costume and make people laugh and abandon their misery for one moment while battling the hardest fight of their life, I can do anything I set my mind to. Our minds are boundless. We can conjur our success or our failure. And for the first time in this cancer ridden body, I believe wholeheartedly that I will beat this thing. 

I've been so cautious to think it. So careful so that if I got bad news that I would hold it together. I've just gotten so used to the bad news. Now I'm getting news about the next step. Now we're looking at what happens when my lungs are clear. It hit me when I asked my doctor's nurse if it would be ok to take a break from my chemo for New Year's eve. The look on my nurses face was one of certainty that it wouldn't hurt anything to have this time for myself. After enduring 12 rounds of this torture, she said it would be ok. It wouldn't set me back. It wouldn't automatically come back and flare up. She said if my next scan was good, if my lungs were clear and if my tumor markers were at the right place, we would need me off of chemo to prep me for radialablasion. Oh the importance of the ifs. Dr. Franco had already mentioned this procedure, but it's best for me to focus on what's at hand instead what could happen. He had told me that this would "blast it out of the liver". I smiled and thanked her. As I walked out of the infusion center, I felt the tears well up and begin to stream down my face. And for the first time, they were happy tears. Tears of incredulity that I had come this far and realization that this was really happening, that I could possibly have this heinous cancer receded out of my spine, lungs, AND liver. This next scan was so crucial. The next 5 days until then felt like a year away. But I was patient. I'd come this far and wasn't going to lose my faith. So I waited on bated breath until then. 

As I walked into MD Anderson again, I had to fight to control the tears that filled my eyes and threatened to spill over. I took deep breaths and clenched my fists. I walked deliberately and concentrated on each step I took and tried not to think about the fact that I was there to understand and treat a cancer that stopped my life in its tracks like a bad car accident. Somehow flying to Houston made it feel so much bigger and more serious. I focused on the escalator, on the sterile decor, on the signs that were scattered along the walls, anything but the people that were here with me doing the same thing I was. But I couldn't help but glance at them. The familiar looks of intrepidation and uncertainty on people that were new to this, along with the grizzled expressions of determination on those who had been battling this for a while. Then there was me. I was somewhere in the middle. Still cautious and vulnerable, but stoic and assiduous in my purpose. I've gotten used to the medical aspect of this. The scans, the IVs, the drawing of my blood, drink this, don't eat for that, take this, avoid that, "this might hurt a bit", etc, etc, etc. That's the part I can get used to. It's the people I see. Their suffering and fear I understand completely. The sheer numbers of people that are going through this is staggering. And I feel for them. It can be overwhelming to be conscious of my emotion along with theirs. And strangely, as much as it's enormously difficult, it's comforting. The gambit of emotions that I go through on these visits to Houston are unyielding and I have a hard time processing them. Though I'm thankful for having the opportunity to go to MD Anderson. I feel a confusing amount of craziness while I'm there, but an odd sense of peace when I leave. 

I finally got to the examination room and waited. Dr. Fogelman entered and gave me a hug. He was warm and smiled. He has a great sense of humor. He gave me comfort. I haven't felt that before with any other doctor in my abundant history with doctors. It gave  me a sense of family. He showed me my scans and told me of the good news that everything was still shrinking. I asked about the radialablasion. He said it's still too widespread since it was still in my lungs and there are too many spots on my liver to attempt it. I felt my hopes crash to the cold, hard floor. This was why I hadn't let my thoughts get too ahead of myself before. All of my excitement of my last visit in Atlanta was gone in that moment. I picked up the mess of what was once my dream of clear lungs and liver and placed it carefully into the back of my mind for later. There will come a time where it will eventually come in handy.

He went into the good information that I chose to focus on. My CEA results, otherwise known as my tumor markers, is a blood test that shows my progress. My results at my diagnosis in June was up in the middle 400s. That day, it had gone down to 9.5. The actual tumor in my colon had gone from 5.5 cm to 1.6 cm. The multiple spots in my lungs had shrunk about 30% from my previous scan. Though it wasn't the clear lung result I was hoping for, it was incredible progress and still great news. He also told me that it would be bad to take a break at this juncture. It could set me back. I had the resolution of my ifs. I would not get my break. I took that news seriously and steeled myself to continue. 

The skin on my fingertips and toes is peeling off. I have sores in my mouth, my nose, and sinuses. Half of my hair has fallen out. At some point I could lose it all.  I'm getting nosebleeds. Half of my hands, feet, and face are numb and painful. My eyes, teeth, and gums hurt. The headaches are irritating and the fatigue is constant. This is the part that gets really hard. I want so badly to say that I don't have a problem with doing more of this, but I wish I could take a break. This chemo is tearing my body apart and me along with it. I often wonder how much more I can endure. I completely lose my focus on being strong when my body is breaking down. Strangely, all I want is to be held when it gets bad, and I'm slowly realizing that it's going to get worse before it gets better. Yes, I have good days. I've got the "good face forward" thing down pat. A smile is better to share than anything I could possibly be feeling or going through. My bad days are really, really brutal. It's no longer just the sick feeling. It's plain painful. We're stopping oxaliplatin, the drug that's causing these side effects for 4 rounds. Then back to it. It's like a fine ballet. The dance of cancer. Break you down, build you up, break you down again and again. Just when you think it's the worst it's going to be, you get to experience it even more heinous. If I looked the way I feel, I'd  look like Gollum. 

We forget that feeling normal is good. It's not until you feel bad 90% of the time that you realize how good normal is. How wonderfully magical it feels to just be treated like nothing is wrong. To not have to think every second about having cancer. I can't wait until the day that it's not the first/only topic of conversation. That this is just a memory and normal is back in my life. Don't get me wrong, I'm perfectly fine talking about it, I think it's important that I do, because 1 in 2 men and 1 in 3 women will get cancer in a lifetime. Nearly half of the people in the U.S. We need to know how to be. I think it's good to be open so we all know how to better deal with it. You will know someone with cancer. Someone you care about. They're going to need you and maybe my openness about sharing this information can somehow strengthen you for this journey. It's not easy, it rages across the lives of everyone it touches, but there is a bizarre beauty in it. A learning curve about the things you really appreciate in life. A clarity of vision for the things that truly matter. A peculiar balance to this tragedy. I now see the honesty of the broad spectrum of humanity and what good we're capable of. This is my anchor. These are my wings.

There's a moment as I'm waking, when I'm not asleep and I'm not awake. A moment of simple existence that has no complex thought. It's where nothing is real, but it feels more authentic than anything when I'm awake.This is the most beautiful moment in my life now. It's then that I am in a situation where everything is wonderfully in place. This is when my dreams feel like they're real. I am free of worry, Free of pain and nausea, and I am independent. There's no knowledge of chemotherapy and it's ill effects. There is no illness. I'm living in my home on my own and my life is mine. It's as if I'm waking to a normal day. It's only a split second before I'm fully cognizant of what my life really is and my heart gets heavy again. But in that moment I have enough to get me through another day. Because one day I'll have that again. And one day that moment will last longer than the fleeting twilight of my rising morning.

"You gain strength, courage,and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."  ~Eleanor Roosevelt

Hope

"Hope." It was written on the window of the bathroom from the steam of the shower when I first came home months ago. It has faded, but I attend to it and rewrite it when it almost disappears. It's a physical reminder to lean on that word. It has so much power. But like real hope, it can fade when it's not given reinforcement. Everything we need, we have to nourish. Even when it's hard. Even when we feel like giving up. Sometimes it feels like I'm suffocating under all of the strength that I feel I'm lacking. Sometimes I can break through it, knowing I'll be ok. But we don't really know. Cancer is an unpredictable adversary. Maybe the drugs will work. Maybe my body won't react properly. Maybe I'll get torn apart before I can be healed. Maybe is the hardest word to swallow. Most likely I'll fight this indefinitely. And I'm so tired. It's only been 6 months, but these 6 months have felt like an eternity. Yet still I hope. I persevere. And I keep going. 

Then she saved me. She took me out of my persistently difficult existence and showed me a new kind of hope. I was kidnapped by my beautiful friend Jennifer to the happiest place on earth to celebrate her birthday. We were to explore all of the Disneyworld parks for 4 days. She treated me to a reprieve from my chemotherapy, my biweekly poisonous saviour. Disney even gave me a disability pass so we didn't have to  wait in line. It was truly amazingly happy. Everyone there had a smile on their face. Laughter echoed all around us. It was an energy that couldn't be denied and we fit right in. It was so much different than I remember as a kid, but still so much the same. We laughed continuously and for the time we were there, all of the bad didn't matter so much. It was all about happiness. Even when I was tired and needed to rest before we went on, stopping for a moment and taking it all in was irrevocably magical. It was a simple and wondrous time. I never had a moment that was less than amazing. And I am truly thankful to have her in my life. Not just because of Disney, and not just because she has joined me in all my costumes for chemo, though I love her for these things, but mainly because she hasn't stopped making me laugh since my diagnosis. Even in my most difficult moments, our laughter pushes through my misery. 

Then, in the middle of all this elation, my world collapsed. Before I left Atlanta, my dog Jude had been acting strangely. My parents told me they would take her to the vet. I left thinking she would get some medication and she'd be fine. I had been calling every day to check on Jude. Each time I called, I was assured that she'd be ok. She was just going for another doctor's visit for more testing. Then finally my father reluctantly told me they had discovered a mass in her spleen and she needed surgery to remove it. She had a 50/50 chance of making it through the surgery and they had already begun to operate. She's 11 years old and her age was against her. As I broke down in front of Hollywood Studios, I couldn't help but finally ask why. Why does life hand out so much of the unfair all at once? How could I ever face myself that she's going through so much and I'm not even there to be with her? I had the strength to fight for myself, but to think of  her suffering like this, broke me. I could no longer put on the brave face. I just couldn't imagine my life at this point without her. The ruthlessness of this situation was relentless. I went numb to everything but this sorrow and painful comprehension of this moment. Jennifer was doing what she could to console me, but nothing could. She finally got me back to the condo and calmed me down. I waited by the phone to hear about the surgery. Several hours later I finally got my answers. She was going to be alright. She made it through and was resting comfortably. I felt myself breathe again.  

My loving parents went ahead with the surgery knowing the odds were against her. They told me not to come home, though I tried, and said we couldn't see her until I came back anyway. They downplayed the situation so I would stay where I was. They wanted me to enjoy myself. I learned later that they had to decide to put her down or do the surgery at that moment. Even if she made it through the surgery, the mass might be cancerous. If it was, she had no more than six months to live. Cancer for both of us at the same time? There was nothing right about this. I didn't know the severity of it until I came home. Had I realized it, I couldn't have stayed. We picked her up the day I got home and I slept on the floor next to her for the first few days. It took over a week to find out the mass was benign. She fought her way through and my sweet girl was going to be ok.

She made me stronger through her fight. It was as if she looked me in the eye and gave me courage. If she could defy death, then so could I. If she could be strong, then I could. But it's exhausting being strong all the time. Sometimes all I want is to be held. The pain, the sick feeling, the experience of knowing that your body is breaking down. Then a reprieve just long enough to feel like you can get through it. Your body starts to rebuild itself, then another onslaught that breaks you down. Chemo is like drowning, then coming back to life, then drowning again. With no mercy. It's torture. Human touch helps me feel like I don't have to be strong for just a moment. To be held by a strong set of arms, I would feel safe enough to just let go for a while. A hug from a kind soul gives me strength. An arm around my shoulder gives me encouragement. Laughter distracts me enough to make it through. But then there are the times that I have to face everything and nothing helps. I am trapped inside the prism of this disease. It's a dark place my body goes to. It's difficult. And I suffer. The neuropathy is getting worse. Cold is painful in my feet, legs, hands, lips and mouth. Those areas are also partially numb. I'm scheduled to stop the drug oxaliplatin that creates this side effect or it could become permanent. Recently I was told that there's too much protein in my body. If it continues to escalate, we may need to stop another one of my chemo drugs that's causing it or it'll damage my kidneys. This is disconcerting because I don't know what they're going to replace these drugs with and I wonder if it will work. But I hold onto the moments that make me a fighter. I am tenacious. I do whatever I can to believe that this existence is only temporary, for nothing in this world is forever. 

How beautifully fragile are we. And so indubitably strong. We live our lives as full as we can and when confronted with mortality, we live even fuller. We know how incredible this fleeting life is in theory. Then the time comes when we are faced with the certainty of the inevitable. And we find a way to persist. We find a way to remember, we find a way to celebrate the life we live. We give of ourselves so that the people we care about don't suffer too greatly. We share smiles and memories, we remind each other why and how we live so greatly. We reassure each other that there is aspiration and love. And we thrive with that knowledge. I have lived in the moments of great family and friendship and I am humbled by everything I've been able to witness and be a part of. I am broken by my experience and glued back together by hope. Picking up the pieces as I go and repairing every bit along the way. Though the future is unknown, I will live like every day is a gift. For one day, the gifts will eventually run dry. And we will reminisce about the days gone by and the ethereal existence we had. So today we laugh, and today we embrace the possibility of everything. Because today is all we truly have. We should remind ourselves of this. Then we can see our purpose. We can look honesty in the face and not fear it, but embrace it. And we can know we live life well.

"Where there's hope, there's life. It fills us with fresh courage and makes us strong again." ~Anne Frank