Update
Wednesday 11/16/11
This is it - today is the big day, 33rd of 33 treatments. Matt accompanied me to my appointment. As usual, we arrived early to my 7:30 am appointment so we sat in the waiting room patiently waiting for the radiation tech to take me back. Finally someone came to the waiting room and he looked at me and said he was going to tease me and tell me that something was wrong with the machine - but then he felt bad for me so he decided not to tease me. I changed my clothes and was prepared for treatment. After treatment was over I met Matt in the waiting room to ring the bell that signifies the end of radiation treatment. According to the information I read online the tradition of ringing the bell was introduced in 1996 at MD Anderson when U.S. Navy Rear Admiral Irve Le Moyne, a patient with head and neck cancer, installed a brass bell at the main campus Radiation Treatment Center. Matt told me I was supposed to ring the bell 3 times -- but in true SuperMonkey Style I think I rang it about 5 or 6 times. :)
I worked the rest of the day and found myself feeling exhausted but happy. I am excited that the days / weeks to come will offer restored energy. I am also excited to be able to sweat and shower as much as I want without having to worry about maintaining any markings on my body. I am reminded of how lucky I am and the fact that life is good!!
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| Saying posted near the bell at Methodist Hospital in Radiation Oncology |
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| I am ready to ring the bell :) |
This bell didn't want to ring at first
(but I eventually got it working)
Tuesday 11/15/11
Today I had the 32nd of 33 treatments and interestingly enough I found myself more focused today. While I am receiving my radiation I am usually thinking about all the things I have to get done that day or that week. But today was different - today I actually decided to be more “present” and aware of what was going on. I noticed a lot of things that I usually ignore; room temperature (which by the way is way too cold), the fact that the radiation techs don’t talk to me but instead talk to each other, the fact that the lights are very bright and I have to stare right at them because I am laying down. After noticing all these things I decided to ask the radiation techs why they leave the lights on when they leave the room. The answer was abrupt, “for safety, we have to be able to watch you while you are getting treatment”. I can’t really appreciate the fact that the delivery of radiation is designed for the techs and the machines and not the patients.
Anyway, during my moments of introspection I realized that my treatment suddenly stopped. Eventually the radiation techs came in and told me that treatment was not complete but the machine stopped working. They asked that I continue to lay perfectly still while they reset the machine - after another 15 - 20 min of laying perfectly still I was told that they had to call an engineer to the machine to fix an issue with the machine. I got up, got dressed and went for a cup of coffee. When I called Matt to tell him I would be at the hospital for an undetermined period of time he asked why I broke the machine. I was eventually called back to complete my treatment after waiting another 45 minutes.
They had to redo my x-rays and complete my treatment. I was told that one of the motors went out (this machine has approximately 65 small motors that move the plates ). Today I was at the hospital for 2 hours. I was exhausted the rest of the day - but I am really close to the end.
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| Picture Received from Shane Prahl (loved it so much I decided to post it) |
Monday 11/14/11
Today I had the 31st of 33 treatments followed by the visit to my radiation oncologist.
I haven’t experienced a great deal of change in my side effects:
- Radiation dermatitis - dry skin, itchy skin and skin darkening. Latest addition is skin peeling -- my pigment is peeling away. Continuing to manage with Aquaphor.
- Pain - sharp shooting pain that lasts 5 min - 30 min. Continuing to manage with advil or pain meds.
- Nausea and Esophagus Pain - this can last beyond the end of radiation. Continuing to manage with “magic” mouthwash.
- Coughing - my cough has continued. I have found that it is worst in the morning. The doctor said this is attributed to the fact that my lungs are getting exposed to radiation. My doctor asked if I wanted medicine to help with the cough -- I declined (mostly because I hate medication and work to avoid it at all cost). There is no telling how long I will have the cough, but it should get better after I complete radiation.
I was provided with my discharge orders so I will not have to see the doctor after my final treatment. The discharge orders basically said the following:
- Your radiated skin requires and may continue to require the appropriate hydration (with lotion - so use as much as possible).
- Your radiated skin will always be more sensitive to sun damage (so use lots of sun screen).
- Your fatigue onset is slow with radiation treatment and is expected to be slow to return (at least 4 weeks).
After today’s doctor visit I am starting to feel a lot closer to the end of radiation.
Saturday 11/12/11
My days are very relaxed lately - not because I need to relax but because I find the activities of daily living pretty exhausting. I now completely understand why having weekends off of radiation is a good idea, if radiation was given 7 days a week I think very few patients would be able to stay on schedule. My daily hospital visits in the early morning hours have trained me so well that I am finding it challenging to sleep in even on the weekends. Today Matt and I talked about the different types of adventures we have known / experienced. Our lives have slowed down a lot but the adventures have continued. They are much different types of adventures; not necessarily the kind you write race reports about, instead these are much more challenging and at times you wish you didn’t have to experience.
Matt and I ended the evening at our neighbors house (Troy and Angela) around a fire. It is funny to have a fire in this weather -- lets just say it was warm around the fire. We had a great time!
Friday 11/11/11
As each day passes I find it remarkable at how much more tired I feel. I wake up each morning feeling tired, I feel tired throughout the day and I feel tired when I go to sleep at night. With the final day of radiation approaching I find myself feeling excited but much like the final day of chemo I think I will be a little to tired to celebrate. Either way the milestone is an important one - so I am looking forward to it.
Stay tuned for more SuperMonkey Adventures,
Nancy
AKA: SuperMonkey
“Education teaches you the rules, experience teaches you the exceptions to the rules.”
- Author Unknown
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