TELL YOUR STORY
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sarcoma story, as a patient,
survivor, or as someone who has lost
a loved one to sarcoma.
Type of Sarcoma: Myxofibrosarcoma
Diagnosis: January 2006
As Jan thinned and trimmed my hair, we talked about our friend Hilary who had just been diagnosed with both breast and kidney cancer. She was in mid-sentence when she stopped and said, “You know that it has gotten bigger,” referring to the lump on the back of my neck. I told her that as one of my New Year’s resolutions, I was finally going to do something about it. For five years, doctors had told me that this mysterious lump was probably nothing more than a fatty tumor and that there was no real cause for alarm. The lump was removed in January and initially diagnosed as a benign mass. I was relieved.
Two weeks later during a routine follow-up surgical visit, I was told that there was good news and bad news. The good news was that the incision was healing properly, and the bad news was that the pathology report from the surgery revealed Sarcoma Cancer – specifically Myxofibrosarcoma. Recommended treatment was radiation therapy followed by additional surgery to remove the tumor bed. I distinctly remember trying to figure out what the good news was in this scenario:
Lesson 1: Always be your own advocate and stay on top of your medical situation. If something does not seem right to you – be persistent. Your body knows the truth. Within 10 days, I was fitted with a special mask that, when secured, held my head in place so that the radiation treatment hit the same “marks” every time. I remember telling people that the mask reminded me of the one that Hannibal Lector wore in the movie, “Silence of the Lambs.” Thank goodness I could check Halloween costume off my “to do” list! In advance of the radiation treatments, I was told that common side effects included loss of energy, appetite, and hair, and possibly skin irritation on my neck. Five weeks of radiation pretty much guaranteed that I would experience all of these in varying degrees. The hardest one for me to manage was trying to find something I could eat that did not taste like metal. I remember joking with people about eating only metal toasted Cheerios for four months.
Lesson 2: Find humor whenever and wherever possible. With all of the serious stuff going on around, just being able to laugh out loud helps everyone involved. Throughout this experience, I maintained a CaringBridge site to keep family and friends informed and to invite them to share their thoughts/feelings with me. Focus becomes very narrow when dealing with illness and it is easy to lose track of important relationships. People really do care and want to help in any way they can…sometimes it is just hard for family and friends to know what to do. I told them, “When in doubt, write a note.” A few words of support and encouragement make a huge difference.
Lesson 3: Keep a written journal of your experience for you and for others. It helps in the healing process. After radiation, I needed time to recover before the next surgery. Spring had arrived in Minnesota and I was enjoying walks with my dog and visits from out of town family and friends. The follow up appointments with my doctors to discuss the next steps included a consult with a reconstructive plastic surgeon who described what, how, and why he would do what he needed to do. The pit in my stomach returned, and I remember telling him that I was self-employed and could squeeze the surgery into my busy schedule in between other work commitments. Can you spell D-E-N-I-A-L? He had to show me pictures of the surgery before I could understand the significance of it. Deep down, I knew that I was doing the right things with the right people at the right time. Realistically, I was still coming to terms with the fact that I had cancer.
Lesson 4: Connect with knowledgeable,credible medical professionals and then listen to them. When they tell you it will take time to recover, believe them – let go and do so. Healing from the inside out does take time, and time is a gift we can give ourselves. The words Sarcoma Cancer were not in my vocabulary before January 2006. And until I learned about Karen Wyckoff and Rein in Sarcoma, I didn’t know what I didn’t know. This organization has provided great information and much needed support especially when I didn’t know I needed it.
Lesson 5: Be open to the possibility that there is always something new to learn – look for the good in the bad. Reflect on your blessings, let go of the clutter, and trust that good things will happen – abundance is waiting.
As always, be grateful and be well!