On Monday, my first day of treatment, I actually went to work in the morning. It was kind of ironic. Here I am teaching a student and helping patients, when later in the day I would be on the flip side in the patient's position. It was a emotional experience, to take care of people when all you want to do is cry in the corner for yourself, but you have to be strong because at the end of the day these people need you to be. The student I had was impressed by composure. When you are sick, it is mentally exhausting, at the end of the day all you want to for life to be "normal", treated the same way, and there is no point of crying in that corner because this is your life and you have to think positive and protect it. Being negative just ruins a day that you could possibly enjoy and who knows what can happen to any of us at any time. Life is precious and it is a gift. My husband walked over with me that first day. My anxiety was so high. I was just staring at the clock. It was "the final countdown". The receptionist told me they were ready for me and I met my nurses. They explained everything to me. The room is full of screens and of course the gamma knife. Which I appropriately named "The Dixie Chicks", since my tumor is named Earl. They place you on the table, in the mask, do a CT scan, then you wait for Dr. Wang, my radiation oncologist, to check calibration because they get it down to a 1mm accuracy. They move you throughout the room on the table to those white markings on the floor, and there are three which makes my name even more appropriate.
The first day, my nurses warned me would be the longest. About 45 minutes in the mask. Once it got started, radiation does not hurt while you are getting your treatment. It is the after effects that make radiation difficult. That and the laying in the mask. Won't lie when you are actually getting the radiation beam it sounds like a laser ink printer.
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| The mask has a front and a back side. They bolt you to the table in it. The holes on the side is where they literally hammer it into the table. |
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| There is a bite block in there that you are biting on the whole time. If you look at my photos I took daily after treatments you can see the red marking on my face from how tight the mask has to fit. |
I woke up the next morning with a right sided headache and nausea after sleeping 12 hours straight. I felt like I have after a super rough night of drinking, where you are hugging the toilet and regretting your actions from the night before because you are throwing up water and bile. It was horrible. I had Autumn with me this day and our little ones can tell when you are sick. Autumn took me by the hand "Come here, mommy", placed me in her toddler bed, covered me with sheets and Norman (her sock monkey), and said "you no good, you sleepy". I lifted my head to look at her and she just placed my head back on the pillow. Just looking into those deep brown eyes make everything I have to endure worth it. She is my miracle.
I went into my second treatment. Got a prescription for zofran ( anti nausea med) and it only took 20 minutes. My mother drove me on Monday, Tuesday, and Wednesday. After the second treatment, we had to go pick up Autumn from my friend Lindsay's house, and I fell asleep the whole way from KU med to Gardner. I woke up in Gardner and my mom was freaking out because she missed a turn. I went inside to get Autumn, spoke to Lindsay, but completely forgot about this later. Like I said the week of radiation was truly a blur of sleeping and vomit for me. I slept about 16 hours that night.
Day 3, I felt like a person again. Much better, just tired. I took Autumn to my friend Haley's and made my journey to radiation again. Once again slept on the way home from radiation and Haley could tell I was a little out of it. I got home slept on the couch. Then slept 12 hours that night.
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| Had my ladies on the couch with me. You can't tell too well but that is Dani under my right arm. |
Day 4, the nausea returned. My sister in law Jessi took me to radiation. We got lunch at Panera. Autumn was at daycare. I remember this being the most I ate all week. It was so good! After treatment though, my decision to eat was a bad joke and I slept another 12 hours.
Day 5, my mother in law took me to radiation and she kept Autumn afterwards. Fred was to get off work early and take me home. I got to ring the bell and keep my mask. YAY! Fred and I went to Houlihan's to celebrate. We shared a app and I got a glass of wine. This would later be yet again another bad idea. I would hug the toilet and sleep 16 hours.
Fast forward to now and I feel so much better. I am still tired and now am suffering some of the side effects from taking so much Zofran but I won't get into details about that. The fear of my face drooping is still there. And that is mainly in my head. They say if my nerve was to swell from radiation, I should have experienced this by now. I am so happy it is over. According to the literature this week and next are supposed to be worse for fatigue then last. So far, um....no, last week week was horrible. But I am so happy this part is over. I have a follow up with Radiation Oncology in a month to see how I am doing. Then my next scan will be in July with Neurosurg. I have a feeling I will be a nervous wreck that week! But that can wait. Live in the moment. Cherish the day! I know my tumor will be a life long journey. There will always be scans. There will always be appointments. There will always be a chance of it growing again. Which radiation has a 90% success rate but technology and radiation is changing yearly so there is not much research about the long term success of stopping tumor growth but up to 5 years. I feel good and have a beautiful family, there is no reason to feel pity for myself. I accomplished something last week for that I am proud of myself.
