Every person recalls vividly when they were given the diagnosis of cancer.
Jane has earned three advanced degrees and had several fulfilling careers as a librarian, rehabilitation counselor and college teacher. Presently she does freelance writing. Her articles include the subjects of hearing loss and deafness, service dogs and struggling with cancer. She has been a cancer survivor since 2010.
She has myelodysplastic syndrome, which is rare, and would love to communicate with others who have MDS.
The moment a patient is told they have a cancer diagnosis the world stops. We remember that moment forever. It is the same sensation as remembering where we were during a terrible time in history such as Pearl Harbor, or when President Kennedy was shot or 9/11.
However, I didn’t learn the typical way. Most people find a suspicious lump, or have a routine test where an abnormality appears or unusual bleeding occurs.
I was tired – that’s all – just fatigue. I had anemia once before, which was corrected by a hysterectomy. But this dragged on and on. The family doctor prescribed the usual iron pills. I took them for a few months and noticed little difference. His office called after some blood tests and referred me to an oncologist/hematologist.
For “normal” people, this would raise a red flag. I was naïve, stupid, in denial or all three. I still wasn’t overly concerned. But let me defend myself a little bit. Over 30 years ago I had been diagnosed with a rare immune disorder named IGA deficiency. This meant half of my immune system was gone, but the other half was still there. This type of deficiency cannot be treated by conventional methods like intravenous treatments to build up immunity. It mostly affects the upper respiratory system, causing lots of infections. All the doctors could recommend was to treat me quickly with antibiotics when an infection started, so I didn’t get worse. It was not unusual for me to spend weeks at a time on antibiotics. I had periods in between I would be all right, then the infections would return. This time, however, none of the respite periods happened. I was being attacked with one after another upper respiratory problem.
I still was not surprised because I had several recent stressors including losing my mother, taking care of the estate, moving to a larger apartment and working two demanding part-time jobs.
Never had any doctor informed me, or research I read, say that IGA deficiency was a precursor to a cancer diagnosis. This was the last thing on my mind. My pea brain said to me, “I have an immune disorder, I am not taking care of myself, and I’m getting multiple infections. So, I have an infection somewhere else in my body they have not found.”
I went to the hematologist and she took eight vials of blood. I returned a week later when she explained all the blood results were fine. I was happy nothing was wrong until she stopped me.
“Something is causing the anemia, so we have to do a bone marrow biopsy.” A sense of alarm stated creeping into my mind. She asked me if I had any questions before we scheduled it and I said no. She gave me a very startled look, but I was more worried about the bone marrow procedure than the results. Most reasonable people would be curious by now, but I didn’t know what questions to ask.
After the procedure, I returned again and asked if she found anything. She said myelodysplastic syndrome and obligingly wrote it down for me. I couldn’t pronounce it, much less spell it! She explained that more lab tests results needed to be processed to see which type of MDS I had and to wait another week.
I went home and perused the Internet. What I read confused me more than helped me. There were five different types of MDS. Some articles called it a cancer, and others stated it was a blood disorder. What did I have?
I found out later that for a long time MDS was considered a rare blood disorder. Recently, however, medical experts feel since a single cell had to start the malformation of blood cells, it is classified as a cancer.
I decided on the next visit to bring a friend with me because I was getting overwhelmed. The oncologist explained which type of MDS I had and that the average life span was 104 months. As the room spun around me I said, “But we found it early.”
She stated that it was not a typical stage 1 through 5, but this type was treatable by a chemo drug.
I left her office in tears and my denial stage was over. My friend was a tremendous support as I came to the realization every person diagnosed with cancer has to absorb. I had walked into the doctor’s office with anemia and walked out with cancer. I was now one of the many cancer survivors who live all over the world. I didn’t know how, but my life was about to change drastically and I needed to be ready.