Monday, April 3, 2017

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