Let the appointments begin

So I went to the hematologist for the first time. I was so freaked out and scared going into that office for the first time. All of the thoughts and fears of being part of the "those with cancer" group were coursing through my body. I wanted to cry as I walked in and saw all elderly patients. Since I really have no outward signs that I am sick, I didn't feel like I belonged there.

The doctor reviewed my results and started to explain what I could have. I only liked one of the options. Most were blood cancers but one was called MGUS (Monoclonal Gammopathy of Undetermined Significance) which in English means "you have this high level of protein but we don't know why and we don't think it will cause you problems."

I wanted the MGUS option and set out to pray, affirm, and set my mind to the fact that this would be my diagnosis. I had about 8 vials of blood drawn, full body x-rays to look for bone lesions, and scheduled a bone marrow biopsy (i will explain the marrow journey in a future blog--there are ways to have this not be so painful).

The test results were pretty good. It wasn't MGUS but it wasn't fully Multiple Myeloma either. I was in-between in a stage called Smouldering Myeloma, a pre-cancer stage.

Multiple Myeloma is a type of cancer that affects the plasma type of white blood cells. Myeloma cells tend to collect in the bone marrow and in the hard, outer part of bones. Sometimes they collect in only one bone and form a single mass, or tumor, called a plasmacytoma. In most cases, however, the myeloma cells collect in many bones, often forming many tumors and causing other problems. When this happens, the disease is called multiple myeloma.

I drove home from the Hematologist's office wondering why I couldn't have contracted a cancer that could would form a tumor and be removable. How come I had to get the type of cancer that is incurable and inoperable?

The Journey Begins

Where do I start? How do you come to terms with the fact that in your early 40s you have a disease that doctors say only the elderly get?

I am starting this blog because I have been dealing with this health issue for more than 2 years. I have often thought of writing a blog to track my journey but didn't know how or where to start. I have recently hit a new place in my diagnosis that got me to thinking about a blog again.

It all started a year and a half ago when I went for an annual checkup. I mentioned that I was tired so the doctor ran a few extra blood tests. One of them came back really high. My "Sed rate," which indicates inflamation in the body, was at 92. The normal range is 0-20. A level of 100 = serious disease according to the medical books.

But the sed rate doesn't tell you where the infamation comes from or what is causing it.

I was referred to a Cardiologist and went through months of testing. My heart is ok.

I was referred to a Rheumatologist for more tests. All seemed to check out ok; my joints were fine, I didn't have arthritis. But he wanted to run one more set of blood tests just to make sure a certain protein wasn't high. If that set of tests came out ok, he would proclaim my sed rate naturally high and would recommend I continue to monitor it, but I would otherwise get a clean bill of health.

When the results of the tests came back and the doctor called me, my world changed. There was a high level of IgG protein in my blood. He was referring me to an Oncology Hematologist.

My ears started ringing and I went into a sort of tunnel vision. Oncologist? A blood oncologist?

Yet the doctor was quick to tell me that this did not mean I had cancer. It was just so I could see what was going on.

But an oncologist? I was going to an oncologist? I think I went into shock.

I immediately searched the internet for clues as to what was happening inside of me. What I found was not good. The average age of someone who gets this is 68! And life expectancy is 3 YEARS! Three years? Three years!!

I hadn't expected to die before I was 45.