It’s been a few weeks since my diagnosis, but you may be surprised to find that my brain radiation treatment has already come and gone. Now it is time for my body to rest and recover, as I come down from all the medicine I’ve been taking. As mentioned before, Jon and I visited the radiologist two weeks ago in order to learn what the diagnosis was and what treatment I should undergo. We were hoping for the localized gamma knife treatment, but because I had eight lesions instead of five, I had to go with a more intense brain radiation. We had done our research and according to the Mayo Clinic, by using the gamma knife treatment, “the specialized equipment focuses close to 200 tiny beams of radiation on a tumor or other target. Although each beam has very little effect on the brain tissue it passes through, a strong dose of radiation is delivered to the site where all the beams meet.” Gamma knife treatment is supposed to be better for you, because it directly attacks the tumor and causes minimal damage to other healthy brain tissue. The laser surgery is often usually completed in one day, instead of over a period of weeks. As you can see, this would have been preferable, but the thing with cancer is you don’t always get a lot of say about what happens to your body. Whatever horrible “treatment”/ method of torture needs to be applied to the deadly cancer cells is what you do, so you brace for whatever comes your way.
I was given a choice of 30 units of radiation spread out over ten days or five days of more intense radiation of 20 units. The doctor said both methods were equally effective, so, since I was young and they felt my body could handle it, they chose the treatment that was more intense. The treatment was similar to the whole brain radiation I received in June, but this time I don’t have any lesions in the cortex of the brain, so the treatment was focused on the cerebellum, rather than the whole area. The cerebellum is the part of the brain in the lower part of the skull. It does not deal with cognitive functions such as speech, movement, and long-term memory, which is good. I can’t even fathom not being able to read or write or think like I used to. The new treatment shouldn’t affect any of those processes, but it still seemed like a decision based on the lesser of two evils: which one will damage me less?
So, now that the treatment was appropriately outlined, without much ado, I started radiation last Wednesday and spent five days in Clinica Alemana getting my brain (and hopefully the tumors) fried. The treatment was pretty much the same as last time but the lasers went on for much longer since it was double in intensity. Hearing those laser beams through my mask going for minutes at a time and smelling that poisonous odor pouring over my face was not fun. The first time they buckled me by my head onto the board I almost had a panic attack. What if I screamed and freaked out- would anyone come to save me from the evil, radiation machine? The first day was traumatic as the treatment was much longer than the previous time and the lasers just kept going and going. I kept trying to hold my breath so I wouldn’t smell the radiation and then remembered that I needed to calm down and just breathe out the bad and breathe in the good, as Jon taught me last time. In order to distract me from my reality, I listened to songs with courageous lyrics like Stronger and Brave and pretended I was a lion roaring away the cancer. When the five days (Wednesday-Tuesday) were finally over I stumbled off the board and successfully shoved that awful memory away in a box and locked the key. The radio technicians, the same as the two times before, were kind to me and handed me some tissues as they helped me back to the waiting room.
For this latest round of treatment my mom flew down here again, taking care of me. It is the seventh trip she has taken in the five years I’ve lived here, which is a testament to how seriously she takes her role of mother. I wish she could spend the money and time doing something fun like visiting grandkids or traveling to see the pyramids, but she has chosen to be by my side instead. I am forever grateful for that.
The trip to the radiologist every day for five days was pretty much a horrible rendition of Déjà vu combined with a lot of needless stress. Jon had to go back to work so my mom was left to drive me to my daily appointment. Unfortunately the first two days we had a lot of trouble getting the task completed, which my mom and I have now laughed about. The first day, the car battery died, so we had to leave the car in the driveway and take a last minute taxi, hoping and praying that no one would hit the tail end of our car, which was jutting out into the road. The second day, a man came to read the gas meter just as we were about to leave and so Chingy got out and we spent the next ten minutes trying to catch him. The third day there were absolutely NO parking spaces at the hospital and so I had to get out of the car and support myself all the way to the radiation room by myself while my mom circled and circled in the lot. I am still suffering pretty intensely from dizziness and nausea so I must have looked like a freak with my shorn curly hair, no makeup, and holding onto the wall to keep me upright as I made my way to the corridor and down a set a stairs.
The main problem is that my head feels like a balloon bobbing indiscriminately on top of my head. When walking, I lurch to the sides and often feel like I’m about to fall down. The worst is trying to find something, like shoes or spices, as I have to move my head a lot and I cannot regain my stability. Sometimes when I’m dizzy and tottering around, not able to walk without support or move my head, I feel more like an 80 year old woman than someone who’s only been on the planet 34 years. I really hope this condition improves as it has greatly reduced my quality of life. It takes me forever to shower and change, but I make sure to do it every day, even if it’s at 3 in the afternoon.
Last week my dad flew down here to be with me as well, and it has been a great comfort to have my parents both down here for support and to binge watch Grey’s Anatomy. Entertaining has been tough because I can’t handle very much activity. This Wednesday we walked to the fashion museum to see a VERY small exhibit about Pele, and the four-block walk really tuckered me out. Holding onto my dad’s arm like a cripple made me feel a little pathetic, really, but I was glad to get out of the house. The rest of the time I have been lying on the couch and dealing with the side effects of my disease and treatment, which are the following:
Hair loss AGAIN!: Due to the radiation I will lose the hair that I just started to grow, which is a huge bummer considering I will probably have to wear a wig for my sister’s wedding in January, as it usually takes me about nine months to a year to grow my hair. I decided that since I was going to lose my hair again I might as well wear it au natural while I could, so I have been sporting a very short pixie cut for the last two weeks. Next week I will be bald for the third time in four years…which I guess isn’t really a priority, but nothing fun to look forward to. I’m sure it will be traumatic.
Stomach Problems: Because my treatment is not stopping my cancer cells from invading the brain, this year I will be taking two oral chemotherapy pills for five days every month, which is pretty tough on the stomach. This pill is what the doctor has prescribed to treat the brain lesions until something new and better comes along. My immunotherapy drugs (Herceptin and Perjeta) have been preventing the cancer from spreading to the internal organs, but have not been very effective with the brain. They are hoping that this drug will keep the cancer at bay until something less toxic can be used. The nurses that gave me the boxes of oral chemotherapy were very adamant that no one touch the pills and that they needed to be disposed of properly at the clinic, which, I’m sure you can guess, thrilled me no end. That sounds like something I should definitely have in my body! Regardless of what I eat and the stomach medicine I take, I always wake up around 3, 4, 5, in the morning with horrible indigestion and heartburn. Poor Jon!
Insomnia: I am also back on the steroids, albeit at a much smaller dose than before, but have been feeling the insomnia from a year ago. I also take strong stomach medicine to prevent the steroids from wreaking havoc on my intestines. My skin hasn’t blown up like last time, but I keep waiting for it to. I am waiting for the weight gain as well. During my middle of the night awakenings, I try my best not to bother Jon who has to go to work in the morning. I, on the other hand, can be awake for a few hours and go back to sleep when he leaves. Judging by his constant yawn when he gets home from the day and tired eyes, my attempts to allow him to sleep have not been so successful. I feel really guilty that I’m making my husband so tired.
Memory Loss: In addition to the five other pills I down each morning, I also have to take medicine to protect my memory for three months after the treatment, which is frightening. The radiologist said I will probably lose even more short-term memory, such as where I put that thing that was in my hand five minutes ago. Most likely I won’t even remember what that thing was or what I needed it for, but that’s part of getting older right? Who needs to remember things anyway? (Not teachers or chefs or event planners- that’s for sure.)
In addition to enduring the side effects of cancer treatment, I also have managed to do some fun, real life things over the past few weeks, like dance it up at a really fun wedding and take my dad out for a great birthday meal. I had to save up my energy for both events, but it was worth it. Clutching onto Jon on the dance floor so I did not fall over brought us even closer so that’s something, right. As I was clutching on to his belt buckles, I just pretended I was drunk like everyone else. Anyone who only knows my story from following my posts and pictures on Facebook from those two nights would think I got a sassy new haircut and was living life to the fullest. I look at the smiling face in those photos, can’t really believe that’s me, and feel relieved I can still pretend from time to time that my life is normal. And I guess it is… normal for me at least.
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Eli, you are not a freak, but a gift. We all hang on every word you write, looking for sings that your pain and suffering will end soon and that you’ll be back on your own two feet soon. You are a source of strength and beauty to all.
Hi Eli, Phil and I always enjoy your posts even Though you are going through Very strong treatments and you are feeling Sick. Just know that we pray for You every week with our Deeper Group Which is a church group of friends. You are strong and will keep up the fight. You write beautifully!
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Admiro tu fuerza . Jon es un gran hombre. Es verdad se ve cansado pero su amor por ti es mas grande y cuando amamos no importa el cansancio y nada solo proteger y estar con el ser amado