Helena Trent

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

Family Time

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I hope everyone is staying safe and healthy out there! I know it has been such a shock to the world. David’s school has already extended the school closing until 5/1, could be longer. So far, he has been completing his virtual school assignments online. I have to say it has been a very good experience for him. It’s a taste of college level learning in terms of flexibility and responsibility which could be challenging to teenage kids. David has done well so far.

I certainly have enjoyed our extra family time together. He has helped me with cooking and household chorus. What a bonus! 🙂 I am getting a real vacation sitting around much and doing very little. Everything is pretty much shut down so there is little reason for me to go out. Wouldn’t it be ironic if coronavirus is the scare that actually save my life?!

My rash is pretty much gone after they prescribed the topical solution for it. My energy has mostly returned after the brain radiation. I have no way of knowing if I am better or not, but I am feeling better as usual, my body is recovering. I have an appointment with my oncologist this Wednesday and I am sure he will schedule a scan soon to see if the drug is working.

Hope everyone stays safe out there. It’s time to go within and get quiet, spend some extra time with family enjoy each other’s company. This crazy time may never happen again (I hope), but let’s enjoy it while it lasts.

Still Here

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Thank you, everyone, for your well wishes and prayers. I have been on the new medicine for about a week now. They told me the most common side effects are skin rash and diarrhea to look out for. Skin rash is especially a “good” sign the medicine is working. I didn’t have anything until Sunday afternoon I started noticing some rash on my face. It’s not bad, they prescribed some topical solution for that. They said I should see some progress after using that for a week.

Other than that, it has been very quiet. I am gradually getting back on my feet. I am still sleeping quite a bit everyday. Just as well, with everything shut down due to coronavirus, I am happy to sit at home do nothing. 🙂

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!