This post was from just over 4 years ago, and we have a little more clarity on the Lymphedema. The Richmond medical community, and probably the medical community around the country seem to be puzzled by Lymphedema. This is Shannon’s biggest issue right now, and we were and are so frustrated with it and felt so blessed to have found some help. Since we are all in the same page now with God Wink’s (If you have no idea what I am talking about, go back one post “Update” and it will be explained) Enter Bunny Young – Life/Business Coach. I met Bunny, by “chance” at a networking meeting, that I founded and act as Chair, Two Twelve “Team Integrity”. Bunny was invited by a Scott Golightly – Estate Planning Attorney. Since meeting Bunny “Wink”, the trajectory of Shannon and my life has changed. Bunny you see is a cancer survivor, and not just any cancer – Cervical Cancer “Wink”. Shannon longed to meet someone that she could relate to, she felt alone during this time. Even in her breast cancer support group, she feels a bit of an anomaly. Bunny and Shannon connected and talked and shared. Bunny referred Shannon to her Lymphedema Therapist, Cindy Stillwell Chronister. As it turns out, Cindy is the only therapist in the State of Virginia using Electro-Lymphatic Therapy for treatment “Wink”. I always knew in the back of my mind some of Shannon’s issues could be controlled by proper diet. Cindy is a Nutrition Therapist as well. “Wink” Bunny is working with Shannon and me to build a community for “Warriors” and “Supporters” – You are on the page that she help me to create as a start to this community, you right now are part of that community and I could not be more grateful that you are taking time to read this. Bunny also works with a woman, Ginger, that is starting a business based on her passion. A business that fuels her passion for clean eating, gardening, and farming. I have spoken to Ginger and look forward to learning more from her about health, and diet, and clean eating, and will share this in future posts. Shannon and I have learned so much in the past years about what not to do and what to do. Our hope is that we can share our journey to make things easier for those behind us and perhaps ahead of us. I wanted to share these posts with the world to give everyone a frame of reference for where we have been in hopes of being able to move forward. Shannon’s struggles daily, but is learning so much about herself. I am just a witness to her self discovery and a supporter of her journey. It is amazing to see in her weakest moments, she did not realize it but she became stronger. She has a voice and a story that needs to be heard, so help others. Her story is her Ripple and she hopes to cause a wave of education, compassion, prayer, and encouragement.
Journal entry by Kevin Beasley — 12/7/2013
My last journal entry was October 30. Things have shifted a little with Shannon. She continued taking the Prednisone but after a week or so she noticed swelling returning, this time just in her upper thighs where before it was throughout her leg down to her toes. The swelling has caused numbness in her lower leg mainly in her left leg. Her Hematologist and her Gyn Oncologist conferenced and decided to treat the numbness with a medication called Nuerontin – the side effects are mood changes/suicidal thoughts. The goal with the Prednisone was to get her hemoglobin back up, which it did. The side effect of Prednisone is swelling, so it stopped the swelling early, but with prolonged use causes swelling. We were left with some big questions. 1. Why was her hemoglobin down. 2. Her Lymphedema therapist said that her swelling is not presenting like typical lymphedema. 3. If it is not lymphedema what is causing the swelling. Shannon just met with the hematologist on Thursday and we posed these questions.. He had no answers and said he wasn’t the one to ask these questions. Who is? They referred Shannon to a Physical and Rehabilitation doctor at MCV. Shannon meets with both her Radiation Oncologist for her 6 month follow up and her Gyn Oncologist next week. We hope to get some answers.
Beth, Shannon’s Lymphedema Therapist by Shannon’s urging called her Gyn Oncologist to discuss her treatment. It seems through our search and experience, the cancer medical community throw everyone into the lymphedema bucket, with no real understanding. If we did not ask more questions I feel like Shannon would have been sentenced to Lymphedema therapy, compression, massage, etc for life. We WANT TO KNOW it is lymphedema not THINK. So we had Beth call and she recommended rather than seeing the doctor at MCV she should go to a specialist and they have been referring patients to a doctor in Charlotte, NC that is a Physical and Rehabilitation specialist that specializes in Lymphedema. We are encouraged at least that we are moving towards some answers.
Shannon is trying to keep her chin up and to those around her will sense nothing is wrong with her. Please know that is gods helping hand to provide her strength and grace to those around her. She needs prayers and support as she is feeling down about her situation, she does not like how she looks, feels, acts, etc. Please pray for Shannon that we get some clarity from the doctors and that this is only a temporary situation. Shannon’s life may never be normal again, just the same as all of us that get older, have children, etc.. but please pray she can get a sense of normalcy that her body will return to a comfortable state that she can do the things she used to be able to do.
I will update as we know more information and as always thank you for your prayers and support.