I have been hesitant to share on Caring Bridge for two reasons. First, I believe in Romans 4:17 which leads us to speak what is not as though it were. I did not want to claim the “C” word over my life. Second, I wanted to wait for a clear diagnosis and treatment plan before I put it out there in writing. We have been on this journey of a diagnosis since January 22nd of this year. We still do not have an exact diagnosis and are considering all options, traditional and alternative, to find the source of this thing they are calling Adenocarcinoma of an Unknown Promary Source (CUPS).
My story began two years ago when my right leg started swelling from an enlarged lymph node. After various doctor visits, unending lab work, circulatory testing, two sonograms and assurance that I was fine, all was not fine. I continued my quest to find out why I developed extreme chemical and food sensitivities in 2014, with joint pain in both wrists.. I believe I was misdiagnosed with lupus in January 2017. I was not aware to ask for tumor marker testing or to find out my nagalase levels. What’s a nagalase anyway??? I did not know to have a virus panel run for the Epstein-Barr virus and to detox my body for all viruses. I have learned that I have to be my own patient advocate . My hope in sharing my story is that I might help one person to keep searching for the right answers because you know the right questions to ask,
The oncology team at MD Anderson has told me that I am a medical mystery. The blood markers from my biopsies do not follow the patterns they are seeing on various scans. Three radiologists read CT scans. MRI’s, and a PET scan...They reported abdominal, liver and lung metastasis. The final MDA doctor, who is the smartest, big-brained person I have ever met, thinks my liver and lungs are clear.
The chemo protocol they are recommending targets two specific types of cancer...breast and ovarian. My mammogram, breast MRI and chest CT scan show no sign of cancer. They want to aggressively treat an unknown source with the most treatable common carcinoma protocol. The regimen would be 3 rounds of chemo, every 21 days. Return to MDA for a PET scan and resume treatment if the tumors are responding. Treatment would be for one year, taking 3-8 months off. We would repeat the chemo protocol for the rest of my life with a goal of five years, best case scenario. Living on chemotherapy, targeting an unknown source for the rest of my life, does not feel like the right answer in my soul.
The doctors have told me that scans do not differentiate between tumors and scar tissue. The borders and characteristics look the same. Coupled with a 2009 hysterectomy pathology report of scar tissue in the abdominal cavity and the fact that I have keloid scarring, I am hopeful that some of the “tumors” they are reporting might actually be scar tissue. Following the advice of a trusted naturopathic doctor, I am taking high doses of a scar eating probiotic...It can’t hurt me. If the invaders are reduced in size, they are not tumors. There is hope.
We are scheduled for a full second opinion evaluation at Cancer Treatment Centers of America in Phoenix next Wednesday thru Friday. They take an integrative approach towards healing. They believe that nutrition and spirituality play a huge role in cancer prevention and healing. Most importantly, they do genetic testing to find out which type of treatment would effectively work with my own immune system. This is practiced all over the world, but is not common in the US. At first glance of my records, they do not agree with the chemo protocol that has been recommended. We may come home with the same plan, but at least there will be other sets of expert eyes and hands on my diagnosis. I would rather put the right treatment off another week or two than begin the wrong treatment today. There are lifetime potential side effects of the drugs and I want them to be the right combination for my body to fight.
Please keep us in your prayers as we seek the best medical advice and make decisions that are ultimately in God’s hands. I cannot put into words the nurturing care Tom has made it his full time life to wrap around me. He is a gift from God. I am thankful for our precious friends and family who have shown us more love through this than we could have ever imagined. The amount of information and researching that is being sent to us for new and promising cancer treatment gives us hope. Please don’t hesitate one second to reach out with any bit of information you might have that could help us in our search for answers. Several people have prefaced a statement with they, “don’t want to overstep, but....”. There is no such thing as overstepping in our world. Knowing that we are not alone is an amazing comfort. Our faith is strong and we are determined to live every single day with laughter. There are tears, but our goal is true joy and thankfulness.
Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord. “Plans to prosper you and not to harm you. Plans to give you hope and a future.”