If any (both….hahaha) of my followers have been wondering where I have been since my last post May 15th, I’ve been on an emotional rollercoaster. I received some bad news from my routine blood work in April which suggested that I possibly had MDS (Myelodysplastic Syndrome…what Robin Roberts from Good Morning America has).
My white and red blood counts had been dropping over several months and for the past two years since chemo were not good to begin with. So, I did some more blood work which showed that I now have a mutated ASXL1 gene….thanks chemo for one more wonderful side effect!
What does it mean? Well, MDS use to be called pre leukemia. It is a disorder in which the bone marrow is unable to make enough normal blood cells for the body. All three of my cells (red, white, and platelets) are not functioning normal.
This disorder usually happens in elderly individuals but can also be secondary due to exposure to toxins like chemo and radiation. Secondary MDS is more difficult to treat and MDS can grow more severe over time and become acute myelogenous leukemia (AML). Treatment may depend on the severity and several other factors but typically is intense chemo and stem cell transplant with a typical poor prognosis.
Well, you can imagine what I was going through this past month…..head spinning with all sorts of information and fears. I never wanted to even entertain the idea of more chemo after all it did to me and how much I have been using natural medicine, diet, exercise, and healthy living to reverse the chemo effects and get me healthy again.
So, I had my pity party for a while. I did extensive research. I sought out a Naturopathic doctor, a herbalist, the owner of a health food store, many fellow bloggers and doctor’s from different parts of the world to help give me insight into what I should do.
I started making and drinking essiac tea, another blend of purification teas, added some new supplements and increased the dosages of other supplements. I also ate a special ($85 for 4 oz) honey which I read had wonderful results in raising white blood cell counts. I was told by traditional doctors that there was nothing I could eat or do to make my blood counts increase….but I had heard similar things from doctors in the past telling me I would be deaf from the sudden sensorineural hearing loss that chemo caused.
I was not feeling like a “healthy cancer chick”, and was under a lot of stress, which is why I stopped blogging for a while. I did my best to put on a happy face for my children, friends, and family but I was angry, scared, sad, exhausted, frightened, and many other things all at once.
My husband, once again, proved to be my rock and helped me stay sane so I did not give up.
With my falling blood counts, and mutated gene, I had to have a bone biopsy which we were hoping wouldn’t be horrible news, but really weren’t expecting the best news. I just kept eating healthy, walking, taking all my supplements, and trying the new teas and “potions” hoping for a miracle. Meanwhile I was researching where in the country to get the best treatment…just in case.
Well, I received my biopsy and blood results today and :) good news! My white blood cell count and absolute neut DOUBLED! In only several weeks, with nothing but natural medicine, when I was told there was nothing I could do. Even better, my bone marrow showed no signs of lymphoma or leukemia!
I’m not completely out of the the woods, but this news is wonderful. I will have to have blood work every three months and if the counts drop too low again will have to repeat the bone biopsy. Now with a mutated gene I am at high risk of developing MDS/AML but my goal is to continue eating and living healthy so hopefully this never happens. Repairing my body from not only the ravages of cancer but from the chemo and radiation will be a lifelong task but I will do whatever it takes to live a long life and wake each day feeling blessed to be breathing and have more memories with my husband and children.
I hope to start cooking and blogging more again, but also want to spend some quality time with my kids while they are on summer vacation, so it may not be daily like in the past. I’m happy to say that I am feeling, once again, like a healthy cancer chick!
Choosing healthy living over dying :)