Isn’t if frustrating when you try to tell someone something and they just don’t believe you? Well… it happened to me all the time before I was diagnosed with celiac disease. Then it happened again when I had cancer. Doctors couldn’t find it and kept blowing off the fact that I felt sicker than usual.
Out of the blue In March of 2003, I began to feel sick to my stomach quite often. My general practitioner and the gastroenterologist he sent me to both insisted it was because I was not following my gluten-free diet regularly but I knew this pain and discomfort was something else. I was sure of it. I had a hard time convincing either one of them of that. Occasionally, I started vomiting after eating a meal. Neither doctor seemed concerned but I was concerned.
My doctor ordered some blood work and the results showed I was anemic. And yes… I was chewing ice again. He prescribed iron supplements for me but several months later when follow-up blood work indicated I was still anemic, he gave me the name of a hematologist/oncologist to see at a hospital that was over 30 miles away. She was great and to this day I love having her as a member of my medical team. She put me on iron intravenous for 8 weeks to bring my hemoglobin and other blood counts up. Wow… I never saw that coming. Since oral iron supplements weren’t working she needed to intensify the dose by putting it straight into my veins. Now I have no intention of using medical lingo on you but quite simply I can tell you that the average hemoglobin number is 12. Doctors are happy if you are at that number or higher. I was hovering between 7 and 8.
I hate to say it but it was a bit of an inconvenience to travel 72 miles round trip to the hospital and back once a week to have my veins poked and prodded in order to set up the intravenous treatment. I had to arrive at work late or leave my job early to get to the hospital. I received my intravenous in the chemotherapy treatment room. In the beginning I was a bit uncomfortable in there. Looking around at all the people sitting in chairs receiving their chemo was depressing. Some wore hats, others wigs, and others simply didn’t care to cover their bald heads. Some of their treatments took up to eight hours. Most had a family member or friend with them so they didn’t have to be alone. Other patients that were in really bad shape lay in beds to receive their treatments. Seeing all this humbled me. Who was I to complain about the trip back and forth to the hospital? My iron treatment lasted about 30 to 45 minutes and then I was done.
By the eighth week of treatment I felt like I had a little more energy and my hemoglobin was at 12. My hematologist asked that I come back in 3 months for follow-up blood work. In August of 2004 my hemoglobin was at 8 once again. She was determined to find the reason for my continuous loss of iron. I loved her for that. She suggested we do a bone marrow test. I can honestly say that was one of the most painful experiences of my life. I cried through the entire procedure. I didn’t love her then. She told me my bones were so soft she had to go deeper than she planned on. They were soft due to a lack of calcium. I didn’t receive anesthesia for this procedure and it seemed to go on forever as she plunged some sharp instrument hard into one of the bones in my lower back/hip area. The nurse who was in the room with us grabbed my hand and I held on to her tight. She kept assuring me it would be over soon.
The biopsy came back negative for bone cancer. I was certainly glad to hear that news. However, I was very depressed we still didn’t know what was wrong with me. I was at the lowest place in my life that I had ever been. I felt like I was just existing and often times I didn’t even feel like getting out of bed in the morning. I felt bad that my kids had to see me like this. I consider myself to be a strong person and I’ve been told by others that I’m a strong person so somehow I just pressed on. My parents were strong people too in tough times so I guess it’s in our genes. I still continued to hold down a job, take care of my family and the household. I was determined not to let this get me down. Whatever it was.