Helena Trent

In Darkness Born the Light - My Journey From Mutation To Transformation

Archives for March 2020

Hail Mary Attempt

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I am finally feeling a bit more like myself this morning. I am not ready to run a marathon yet… ok, never, but at least I am out of bed and somewhat clear in my head. My poor scalp feels sunburned and over sensitive from the radiation. I started losing my hair on the very last day of the radiation. Every morning I get up to brush my hair, chunks and chunks of hair felt out. I still have hair left, but won’t be for long. I am actually looking forward to being bald. I am curious what my head looks like… like a baby’s head, smooth and shiny. lol!

I declined further chemo from my oncologist. He offered me another gene inhibitor to try as a last attempt. I was on a gene inhibitor when I was first diagnose over a year ago. The drug did miracles for me initially so much so that I though cancer went into remission… but then it only took 3 months for my body to render the drug ineffective and they had to take me off it. This other drug is made by a different company, it targets the same gene mutation. It has been around longer for 4 or 5 years. It was not the drug of my oncologist’s first choice because it has huge upside and huge downside. The upside is of course it could seriously interrupts the cancer. People that respond well could stay on the drug for years and years. The downside is it could have some serious and horrible side effects including internal bleeding and organ failures that lead to death. There are no studies on patients that failed one gene inhibitor and got on another one to see if it’s effective. I know the drug works differently in the system through a different process, so I am hoping it’s just different enough that my body responds to it. Who knows, it could be another miracle! It’s my hail mary attempt one lsat time.

My insurance company denied it at first based on the fact that I failed a similar preferred drug already, but my doctor fought back and got me the medicine. It arrived in the mail this morning!! Doesn’t it look serious? Bottle within a bottle. They told me I need to wash my hands after handling the drug. If others handle the drug for me, they should wear a latex glove!! I can’t wait to swallow this thing! lol!!

It needs to be taken at exactly the same time every day on an empty stomach. I will start tomorrow! Wish me luck!

Peeling Onions

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I am all done with brain radiation! Woohoo!! I have no more medical treatments of any kind of my calendar.

A fellow radiation patient and his family are so sweet, they got me flowers and gifts to celebrate the completion of radiation. I only met them when I started radiation a couple of weeks ago in the waiting room. I was scheduled after him everyday, so we got to know each other over the past couple of weeks. They got me yellow roses for friendship. People are so kind. Cancer patients have a special understanding of what we go through on a daily basis. We don’t miss an occasion for celebration.

On a personal level, I am relieved another difficult chapter is behind me. Brain radiation really took a lot out of me. As with every step on this journey, I learned something about myself. It’s like peeling an onion, there are layers and layers. After I slept and slept, (BTW, I think I slept as much as my cats did, that’s really saying something!) I realized I may not truly knew what my resting state was. I have always been a very productive person my whole life, running a business, volunteering, doing family stuff, trying to have a personal life, etc. I almost always had a full schedule. After clearing my calendar for 2 weeks, did nothing but rest, I felt the overwhelming exhaustion from radiation, yes, but from years of living life on the fast lane as well. Whenever I have something to do, I think my body automatically floods my system with adrenaline so I could get done what I needed to get done. Sometimes I would even get energized by it, but at a cost to my body I didn’t know.

Now that I know, I am going to step back from all regularly scheduled activities and let my body find its balance and restore the energy. The best thing I learned these past 2 weeks is I don’t need to be the driver, my body is. This life belongs to this body, I am just a passenger along for the ride. It has done the best all my life to serve me, now it’s my turn to serve it.

I remember when David was a little baby and every time he was sick, I felt so powerless. I felt the same way about my body clearly the last couple of weeks. I couldn’t do much of anything while this body is going through what it is going through. I couldn’t take away its pain, discomfort, exhaustion, feeling of helplessness, sadness, etc. but I could be there for myself like I was there holding David as a baby when he was sick. It didn’t change the circumstance one bit, but it certainly made it a lot easier to endure. I learned I could be there for myself unconditionally. This body doesn’t have to tell me what I want to hear, pain or discomfort doesn’t have to go away, things don’t have to be right for me to sit there with this body and just breath. It’s such a simple practice to be there for myself.