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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