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4/7/2019-“The World is richer than it is possible to express in any single language.” -Ilya Prigogine
“Since being diagnosed with ULMS in 2015, my entire world has changed. It is like I have entered into new terrain that is very much like going into the unknown. To keep myself grounded and not fear based, I am in the garden each day, as the nourishment it provides is healing on so many levels. Now that I am not traveling out as much, I can understand and appreciate the small micro-movements of the plants as they pass through the seasons and express their dimensions in shape and color. The healing energy of this world gives me the patience and confidence that I can walk with the diagnosis and come out on the other side.” MSH
4/3/2019- As a 13-year survivor of leiomyosarcoma, I strongly encourage the newly diagnosed patient to advocate for yourself throughout your treatment journey. Find a sarcoma center near you if at all possible, and be prepared with your questions once you make it to your appointment with that all-important sarcoma specialist. Stand ready to hear the facts concerning your particular situation, even if they are difficult to hear. It will be very helpful to have your caregiver with you, not only for that “extra set of ears”, but for the strength and support that you will need along the way. Once you’ve completed your treatment, survivorship care planning is crucial. Your oncology care team can help you and your caregiver to come up with a plan to rebuild your quality of life.
For our future, The International LMS Research Roundtable will bring researchers from around the world to discuss LMS-specific research, for more precision in clinical trials for LMS patients. Putting together a standard of care for us beyond NCCN guidelines will be important for community providers that do not see a high volume of LMS patients.
It may be hard on some days to remember that we have much to be thankful for, in spite of all we are going through to fight this disease. I can tell you that gratitude for the little things has carried me through many a dreary day, and I hope that is the case for you as well.-Lea Custer
12/2/2018- My life has certainly changed since I have been taking MCT oil and getting acupuncture! It has made all the difference and I am not at all tired like I once was…I can go and go now on my full medical dose. You might like to look into it as an extra boost with anything..it is coconut medium chain triglycerides and it is something that you can add in your coffee or tea in the morning and then you can add in more later if you like. I just use 1 tbs. a day so far. – Marlana