One of the most common questions I have received since my cancer journey began has been “how are you so calm about this?” My initial response to this question was “if I fall apart, what will the rest of my family do?”. Recently I came to the conclusion that I wasn't upset because at that moment there was nothing that I could do to change my situation other than to plan my attack. Knowledge is power! As an oncology nurse, I was very much aware of what was ahead of me. My biggest decision was whether to participate in a clinical trial that was offered, which I ended up participating in. I was blessed to have so many medical professionals in my corner, allowing me to bounce ideas off of. I give so much credit to those of you who successfully navigate the medical system without medical knowledge. Knowing the right questions to ask is crucial to getting the most out of any doctor’s appointment. NEVER be afraid to ask all the questions you need answered. Always make a list prioritizing the most important to you. If you need help determining what to ask, I can provide feedback. I will be creating printable documents in the near future with a list of questions that patients often don't get answered at their doctor’s appointments. Always remember, as a patient, you have the right to have your questions answered so you can make an informed decision regarding your care. For many people once they have completed their initial treatment, they are done. For many others like myself, treatment will be ongoing. Right now, im have been on maintenance therapy for 16 months, with one drug being on hold for toxicies. I am in the window of time when women with my staging are likely to have a recurrence, yet I’m not in a panic about test results, because i know what the plan will be when the cancer is back. I’ve recently seen people that i havent seen since long before the pandemic began. They were all aware of my diagnosis and expressed first sympathy when they understood that I’ll never be “cured”, then shock of my upbeat attitude. Advanced cancer is being treated as a chronic disease, with cure being unlikely, but still very treatable for many years. I am looking for feedback! Is this information helpful? Please provide any suggestions either in comments, email, or messenger on facebook. While scrolling through facebook, I stumbled upon the word “WABI SABI’, I had no idea what it meant, so I looked it up. In very simple terms, it meant finding beauty in imperfection--appreciating things the way they are. In that moment, I realized that I was expecting too much from myself--that I still felt broken because I was unable to do what I was formerly capable of. One of my philosophies has been that if you don’t have expectations, you will never be disappointed. I needed to apply that principle to myself. Finding this quote changed my mindset and allowed me to accept my limitations. This acceptance does not mean that I gave up trying to improve my health, it meant that even if I didn't find the cause for my pain and weakness, I was still me--strong and determined! How to lose your hair There is no right or wrong way to lose your hair, the only thing you need to do is make your plan. Some people never shave their head and want to hold onto every last strand. I knew from the beginning that I planned to shave my head as soon as it started coming out in clumps. I had been dealing with apathy hair for many years. I didn’t know what i wanted to do with my hair so i did nothing, my hair was the longest that it had ever been in my lifetime prior to cancer. I decided to do something fun before it all fell out. I had always wanted to try a bold color and style, but never had the courage to commit to it. Well my time had come to go bold… When my hair started falling out I asked my family if they wanted to participate in the shaving of my hair. My son, buzzed my head while his wife looked on. I was fully prepared and my new look did not bother me in the least. When my hair was long, I would often wear a buff to keep everything tucked in. This became my regular look. I never wore a wig, on occasion I would wear a scarf or hat, but the buff was my go to look. My first time going out in public after losing my hair was an outing to see Downton Abbey with my fabulous friend Mary. I wore a buff and fedora. I had my makeup on and I thought I looked great. When the attendant, who had Down's syndrome, took our tickets, he asked what happened to my hair. I told him that it fell out, but that was ok with me. He asked if I had cancer and I told him yes. He said that’s too bad. It was a brief encounter with innocent questions, but it clearly confirmed that there was no hiding hair loss. I didn't care one bit! Looking through pictures, I came across old school photos and noted that there are way worse hairstyles than being bald. |
AuthorBarb Schlatter Archives
May 2022
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