The Diagnosis

April Fools Day 2013 - I am very rarely surprised. I like surprises, it's not that I avoid them. I just pick up on things and tend to see what's coming, just kind of instinctual that way. I guess I did pick up on it actually, just not in advance. I heard the surgeon in the hallway. I was his first appointment that afternoon. I heard him arrive and speak to his nurse. My surgeon is a very funny, jovial, hardly a serious moment kind of guy. He often says things like, "Oh I do these all the time, this will be nothing." about things like bilateral hernia surgery. Much more likely to hear that than any type of explanation on procedure. When David and I first met him we decided he was just this side of, "he's a little too flaky to cut into me." I heard his voice subdued and quiet, not the loud laughing that is normal for him. Then I realized he had stepped in his office and was on the phone. I could not make out what he was saying, only his tone, but I just knew it was about me and he was digging for answers. When he opened the door to my room I knew I had been right, I would not have guessed he was capable of looking so serious. He surprised me with a cancer diagnosis. No April Fools announcement for me that day.  

The Short Version

For everyone who does not care for long versions just read this and have all you need to know.

After two+ years of coughing, itching madly and a variety of other symptoms, visits to 7 different doctors, multiple scans, biopsies and labs and various diagnosis and misleading explanations, I was, on April 1'st, finally diagnosed with Hodgkins. The B cells in my blood are mutated - they are cancer cells. The cells divide rapidly and don't die as they should, so they are collecting in nodules throughout my body. The good news is, it is a "treatable" cancer. The bad news is, I have to have treatment. I don't know exactly what my treatment plan will be just yet. I will be undergoing more testing to determine the stage of the nodular sclerosis which will dictate treatment. The treatment will involve chemo and radiation, the tests will determine the regime. The goal is remission. The chances of it returning are 50% in the next ten years, increasing after that time period. The success rate of treating this cancer is 95%. 

The Long Version

I started coughing well over two years ago. After realizing it wasn't going away I saw my gp (general practitioner), and went through a few months of him suggesting over the counter type explanations before he too realized it was not going away. Next, he ordered a chest x-ray which was clear and gave me an inhaler. Many months later he sent me to the surgeon to explore the source of an inflammation in my neck that had developed. An ultrasound of my neck and blood work was explained by the surgeon as mildly off, his advice was to do nothing and visit again in six months. By now, the cough had become constant but was still being generally regarded as an allergy itch. 

Meanwhile, I had also started itching like mad. Back to the gp who spent months diagnosing me with everything from dry skin to scabies to poison ivy. This too was not going away. I went to a dermatologist. After spending months of mad itching and slathering every oil and cream known to man on the itch, she called it "dry skin" and prescribed a cream to apply multiple times a day over my entire body. This tube was measured in point ounces. It wouldn't cover a babies body once much less mine, not even the "thin layer" as instructed would spread that far. So, I found another dermatologist. After several visits and lab work, I was diagnosed with every doctors favorite diagnosis - allergies. He explained that thousands of dollars in allergy testing would likely not find the culprit. He too prescribed cream, his at least was a pound tub with refills - but it did not help. 

I was doing less all the time. Fatigue and irritability growing worse by the day. In hindsight, I realize there were more symptoms I just didn't verbalize. I now recall saying frequently to David, casually, "I wish I would just feel good again." Also, other much more serious, in terms of demanding attention, issues were arising.  Our entire family "enjoyed" a holiday flu epidemic that put us all out for about two weeks. While the others healed and worked back to their old routines I just could not seem to bounce back. It had become blatantly clear that I was sick. I decided it was time to change to a new doctor for general practice. 

My new doctor immediately took my situation seriously. He realized my quality of life had diminished and believed that I should be enjoying good health. After careful consideration he decided that most all of my symptoms - except the coughing - could be explained by a thyroid malfunction. A trip to the endocrinologist confirmed his suspicion. I was diagnosed after several tests with Grave's Disease which explained all of my symptoms - except the coughing. That doctor initially was with the opinion that the large goiter could have stimulated a cough reflex. After another visit and hearing the cough again however, he decided it was much too severe to be attributed to the thyroid and felt I should explore the cause at a pulmonary specialist. The morning after the visit he suggested a pulmonary doctor, he called to tell me to first get to my gp. My blood work had come to his desk and it indicated an infection. 

I was very curious to see how the gp was going to diagnosis an infection I had no clue about myself. No sore throat or burning places etc. He examined me and then suggested we look at the most obvious abnormality - the cough. Another chest x-ray this time revealed an opacity. This was followed up with an mri which revealed the large lymph nodules throughout my chest, armpits and neck. Next I went to the pulmonary specialist who charged me a ridiculously outrageous sum of money to do, really nothing other than refer me back to the surgeon. Rolling me off to surgery to remove a nodule from my neck the surgeon was saying to me that he believed this wasn't going to be anything other than some fungal infection. Which is what I had come to think as well. My work with horses, I felt, could have exposed me to all sorts of fun things breathed in from the dusty air. That brings us to April 1'st. 

At some point in all this referring to this and that doctor I had the notion that I was having to keep track of too much and would botch it so I started demanding every doctor and lab send copies of everything to my gp. Glad I did because April 2'nd I had Graves and lymphoma and no doctors appointments. I scheduled with my gp who directed me to a hematologist oncologist. I have a million and twelve questions not only about the cancer but about how to manage the Graves while treating the cancer. While I will learn a lot in the months to come I suspect not knowing some answers is also going to become a norm.