Or, Diagnosis Part IV
Cancer Scare Number Four
“Casey’s” body language was not matching her words. He was my new, naturopathic doctor and she was saying things like he “just wanted to be sure” and that he wanted me to see someone who knew more about this. But it was Friday and she’d already made a Monday appointment for me to see another doctor. Plus, she was moving around the room with an urgency that made me suspicious.
“Just tell me,” I insisted. “I won’t hold you to it.” Clearly something was on his mind. Clearly she had an opinion on what this latest test result meant.
“It could mean liver or bone cancer.”
I looked at him uncomprehendingly. Then my mind did a quick calculation. Liver or bone? Aren’t those the worst places to get cancer? How did I get here? Again?
The first cancer scare was over before it began. I was home recovering from surgery in September 2005 and one of the many letters that arrived in my mailbox from Stanford Hospital said the pathologist had determined I didn’t have cancer. I hadn’t known it was an option.
When Addison was still my doctor in 2006, he thought I might have thyroid cancer. Victoria came with me to the endocrinologist and said I instantly looked ten years younger when the ultrasound test was negative.
Shortly after I found out I have Chronic Fatigue Syndrome in 2007, somebody insisted I get a preventive mammogram. I didn’t think it was a good idea because I knew my lymphatic system was still healing but I gave in after multiple rounds of badgering. Next thing I knew, I’d been asked to come back for another look and found myself waiting in a very nice cancer wing. I tried really hard to hold in my emotions but eventually screamed “I can’t take any more!” as I broke down in hot, ugly tears. The technician took pity on me and signaled that the test was fine. I’m not going back. Not before CFS/FMS is over for me.
During this time, I was looking for a medical doctor who could treat CFS and enlisted the help of a few friends. John’s sister suggested finding a rheumatologist but when I contacted the one who had treated my wrist at Palo Alto Medical Foundation, her office called me back with the words “we don’t want to deal with that here.” Richard and Victoria found a professor at Stanford who was running a clinical trial treating CFS with an anti-viral drug called Valcyte. But I was rejected because my Chronic Fatigue appeared to have been induced by surgery. He was working with virus-induced CFS only.
I felt quite disappointed when I couldn’t be part of the clinical trial but it’s turned out to be a blessing in disguise. I was eventually prescribed Valcyte as part of an overall CFS/FMS protocol which made it more effective for me. Also, I learned that Dr. Montoya classifies Chronic Fatigue cases according to how they are triggered. The main classes he uses, as I remember them, are virus-induced, bacteria-induced, grief-induced and surgery-induced. Obviously, I have surgery-induced Chronic Fatigue Syndrome. But there was a time when my mother, grandmother and half-brother died within a month of each other. About three months later, I woke up one morning in 1996 and could not move my body. I must have spent about an hour convincing my hand to reach the phone beside my bed and call for help. Then it took me a year and a half to return to work. I’m guessing that was grief-induced CFS …
After the cancer scare in Casey’s office, it took about a month to prove this was wrong. Luckily, I’d woken up two mornings later yelling “This is bull! There’s no way I have cancer!!” (I’d spent the weekend thinking I was going to die which, though upsetting, was oddly freeing.) I also decided against the second round of chelation therapy she was recommending and turned to Classical Acupuncture.
In 2008, I discovered Dr. Teitelbaum’s book From Fatigued to Fantastic and found out that not only are Chronic Fatigue Syndrome and Fibromyalgia different manifestations of the same underlying condition, they typically occur together. The condition I’m recovering from is Chronic Fatigue Syndrome/Fibromyalgia, with the CFS symptoms being dominant. By July of that year, I was following the SHINE protocol on my own, with Dr. Teitelbaum answering my questions in email. I apply Dr. Young’s pH Miracle approach to the Nutrition and Exercise part of SHINE.
Finally in the Spring of 2009, just as I’d given up on actually being able to see a local doctor who knew what to do with CFS/FMS, I discovered that a new clinic which specialized in my condition had opened up about ten minutes from my home. Like the small set of doctors in the world who know how to treat Chronic Fatigue, Holtorf Medical Group bases their integrative, comprehensive treatment on Teitelbaum’s research.
In short, I went on a two-year journey to find a doctor that’s practically in my back yard. And the massive, inadvertent education I had during that time benefits both the relationships with my Holtorf doctors and my ability to execute the treatment protocol effectively! There’s something poetic about that.
I’ve bawled a couple of times while writing this. It’s been very healing! Thank you so much for reading. Next week I’ll conclude the Diagnosis series with a few words about running into the medical and social misunderstanding of CFS/FMS.