To start the story from the beginning, go here.
In August, Dr. John felt like it was time to check my progress. He decided to do another CT scan of my abdomen and pelvis and some more blood tests. I asked about checking on the lungs as well since leiomyosarcoma usually metastasizes to the liver and the lungs. He said we should limit the exposure of radiation from the CT scan so he opted to not check the lungs at this time.
I also asked about getting a PET scan since those are typically used to detect all cancer throughout the entire body. I wondered if they had less radiation than a CT scan. Dr. John didn’t like the idea of a PET scan. He said that they have similar levels of radiation but then he explained to me how they work: radioactive glucose–a simple sugar is injected into the body. The scan shows the areas of the body that metabolize the glucose the most. Cancer cells utilize glucose more than other cells so they “light up” on the scans. It was a revelatory experience for me in that it confirmed that sugar does indeed feed cancer and further justified my abstinence from sugar.
I was not excited to undergo another CT scan. The chalky contrast was absolutely disgusting. I was even more repulsed by it now that I knew all the unnatural toxic chemicals that are in it–definitely not something that would help my body heal itself from cancer. A quote from Hippocrates often came to mind as I consider different substances I could eat or ingest: “Let food be thy medicine and medicine be thy food,” and another quote a friend had on her fridge: “whatever you are putting in your body is either feeding disease or fighting it.” It continued to contribute to my thinking that everything I eat is either healing my body or poisoning it.
When I went to pick up the contrast from the radiology center, the receptionist asked what flavor I wanted.
“Are any of them good?” I asked.”
“Some people think the berry flavor is better,” she said. “But none of them are really any good.”
“Then just give me the least nasty one.” I said.
She laughed and handed me two containers of berry-flavored chalk. I’m pretty sure I gagged and almost vomited a few times while trying to drink it. It really is that bad.
The CT scan went rather quickly–I put on the gown, had an IV put in, and entered the machine. After about 10 minutes of laying there and moving in and out of the circular machine, I was done. As I left, they said my doctor should have the results within a day or two.
For a cancer patient the time waiting for results feels like forever. It’s what has been termed as “scanxiety.” It’s waiting to know if the treatment is working and how well it’s working. Waiting to know if I can celebrate that I am going to survive or waiting to find out that the cancer is still there and still growing; that this unconventional, last ditch effort to heal my body isn’t working and is all a bunch of crap that supposedly works for other people but not me. It’s waiting to know how to feel. Waiting to know if I’m going to live or die.
When I ordered my scans I gave permission for both Dr. John and Dr. Wingo to receive the results. Dr. Wingo was a lot more accessible since I had her phone number so I was able to ask her after about a day or two to see if she had the results and could share them with me. She willingly complied and called me to tell me the results.
Dr. Wingo started by saying that it looked pretty good so far. The findings show “#1: Small low-attenuation lesions within the right hepatic lobe, likely benign cysts or hemangioma. #2: Previously described right adnexal lesion is not visualized. #3: Otherwise, no acute abdominal or pelvic pathology identified.”
I was cautiously thrilled. The lesion on the liver was somewhat disconcerting but didn’t appear to be metastatic lesions, which is what I was most worried about. And no other signs of tumor development. What a relief. But it had only been 3 months since my last scan–4 months since the surgery. Leiomyosarcoma is an aggressive, fast-growing cancer, but how fast? How soon would I see evidence of it growing back? I was hopeful that this was evidence that my treatment plan so far was working.
I received the results of my blood tests at my next visit with Dr. John. He didn’t order quite as many tests as my first visit, but enough to get a pretty good idea of my progress. The most notable results were my CRP (C-reactive protein), thyroglobulin antibodies (that signify thyroid autoimmune disease), ANA screen (which also tests for autoimmune disease), urine heavy metal panel, and vitamin D level. The CRP level rises in response to inflammation in the body, which occurs in conjunction with cancer. My level was <0.2 and low risk is below 1.0. This is a great result. My thyroglobulin antibodies were at 44 back in May and at this time they were <20. Normal is <40. My ANA screen was positive in May and negative this time. This means my Hashimoto’s thyroiditis had resolved. The urine heavy metal panel showed 25 mcg/g of arsenic and 4mcg/g of lead. Both are within normal levels, but I wasn’t exactly thrilled to have any level of heavy metals in my body. My vitamin D level was low at 26.7. Normal is 30-100. Dr. John was happy with the progress shown by the blood tests, except for the vitamin D. He expressed concern that it was so low. He said I needed to supplement and get my vitamin D level to at least 50 to have my immune system operating at optimal efficiency.
Although Dr. John doesn’t show a lot of emotion, I could tell that he was pleased with the results. He told me to just keep doing what I’ve been doing because it looks like it’s working. But he did write me a prescription for Arimidex, which is an estrogen-blocking drug. He said that because my tumors had estrogen receptors, this was an added measure to keep the cancer from growing back. After having the MTHFR mutation explained to me by him several times and understanding the need for a clean diet, I was leery of taking a prescription. I definitely questioned this approach because I was trying to steer clear of anything that wasn’t “natural.” I was basing my entire treatment approach on minimizing anything processed in or on my body and I felt like this went against everything I had been told by him prior. I hesitantly accepted the prescription and filled it at the Walgreens on my way home. It was only a month’s worth with one refill. I began taking one a day, very apprehensively. I knew it would exacerbate whatever menopausal symptoms I was already experiencing–the tendency to be more emotional, night sweats, and hot flashes.
But despite this new addition to my daily repertoire of supplements that I was taking, I was more focused on the positive results from my blood tests. To say I was happy is not entirely accurate. It was more a sense of relief–like some of the tension I had been feeling over the past few months was released. I had been feeling on edge ever since the cancer diagnosis. Not knowing if the treatment I had chosen was actually working or if the cancer was growing faster than I could control it with treatments. It gave me some peace of mind to know that I was headed in the right direction.
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