Brain Radiation

The last two weeks have been very odd for me. I haven’t really felt like talking to anyone because I am having a good deal of trouble knowing who I am or what I am all about. If you don’t know me that well, I would describe myself as an active, social person. I love to cook, drink wine, host parties, dance, plan trips, etc. When this new diagnosis came up, my whole life was thrown into a whirlwind. I didn’t have time to properly close out the school year, or say goodbye to departing friends, or really do any of the things I had planned to do. In addition, we are not going to the United States this summer: no workshop for school in Napa, no more time in California with college friends, no trip to Olympic National Park and Canada with sissy and Dustin, no more fun times in Chicago with my in laws. All of these things I regret, and it was very difficult deleting them off my calendar.
Luckily my family flew down last weekend to help me through my treatment and they’ve been here by my side throughout it all. It is a great comfort to have them here, keeping me sane, even though I have a bit of cabin fever being cramped up in the house for so long. It feels a little like Groundhog Day, especially now that school’s over and most of our friends have gone home for their vacation. I feel a little left behind, but know that I need to be here and do what I need to do.
I mentioned before that I am receiving ten sessions of brain radiation. It feels so weird to say that because I have always been very particular about the brain. It controls everything- my writing, my thinking and I don’t want that to go. Mercifully the treatment is very short: about 4-5 minutes. I have to get up in the morning and take several oral chemotherapy pills along with steroids and a pill that is supposed to help with the nausea. I was sick for the first day (probably nerves) but so far all I really feel is tired. And also, I have some serious sinus infections and a hacking smokers cough. It prevents me (and probably the rest of my family members) from sleeping through the night. After I wake up, eat breakfast, and shower, we drive to Clinica Alemana, and I begin the long walk from the car park, up through the escalators, across the hospital, and down the stairs to the radiation wing. The worst part is that I can’t wear any makeup on my face and my hair is generally wet because I’m trying to make it last as long as possible, so I definitely don’t look my best. Definitely… Catching a glimpse in the mirror is no fun indeed. Recently I’ve made an effort to put on makeup after the treatment so I’m feeling a little better about my appearance. However, I’m sure these steroids will catch up to me soon and my physical appearance will begin to change. I’m not looking forward to that at all, nor am I to the loss of my hair again, which I’ve spent a good two years growing out and haven’t gotten very far. My hair doesn’t look that great unless I straighten it, so I guess I’m just destined to rock a wig and some short, curly hair again when that grows out. It was no fun telling my hair dresser that I needed to wear my wig again, but they are giving it a good clean and I am going in tomorrow in order to change the style a bit. I almost lost it in tears and so did the hairdresser, but instead we just said “pucha” a lot and hugged.
Back to the treatment: when we arrive in the radiation wing it is all very fast. The same people are there for their appointments and I definitely seem like the youngest by far. They call my name and lead me into the back where I got my original radiation done on the tumor. The technicians are the same, and they have been very helpful in calming my nerves. This time however, they are not radiating the breast: they are radiating the brain. It is a bit shorter and also more nerve racking. I bring my phone with me so I can listen to music, which is a big help. It calms me down. The one time I forgot my phone I almost had a panic attack in the car, but I made it through. Music is such a blessing.
The radiation is very short but this time I am fitted with a mask that they made out of plastic mesh when I was in the hospital. They buckle me into the headboard, so I cannot move my head and then the laser begins. Hearing those snaps of the buckles is very nerve inducing, so I just sit there and try to breath in the good and breath out the bad and focus on calming my trembling body. The thing that I don’t like about it the most is the smell. This fluorescent light comes on and then it smells like something bad is happening to my head; it smells like radiation. The first few times I was almost inconsolable getting the mask made and having my brain radiated. I really didn’t enjoy it, but I’m getting used to it now. I only have two more sessions so I’m looking forward to being done with that.
The only problem with this treatment is that I won’t know if it worked for another three whole months. Apparently the radiation keeps working for a while so if the lesions have been shrunk or I need to get surgery to remove some then we won’t know until September. So… that’s the news for now. So much to think about… and so little to do, except just sit there calmly, finish my treatment, and hope for the best.

7 comments

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  1. Frances, Buddy and Skye

    I’m not very religious, but I do say a little prayer each night for the people ( and pets) I love. Now you are included. Sending lots of hugs xxxx

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  2. Becky

    Thank you for writing so eloquently and sharing your experience Eli. I am thinking of you and praying. I am glad you have so much family, love and of course, your music.

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  3. Agnes Franklin

    Thank you ElI for writing and thank Jon for posting to FB. It brings me back to your reality. You are so much more than this radiation. All the people who love you will be waiting for the good news in September. Plan wonderful and peaceful experiences for this vacation time and write when you feel like it. Feel the prayers coming from all around.

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