I finally got the appointment with the oncologist. I was told I was a level 2 patient. What the heck does that mean? It means there are issues and I do need to be seen, but this is not an emergency! Whew, well that is good, isn’t it?
They mailed me a packet of stuff that I needed to fill out and bring with me. When this came it was in a 6×9 inch envelope, and I basically had to tell them the story of my life. I am in my 50’s and they wanted to know dates on any surgeries that I have had. Who the heck can remember what date one had surgery over 30 years ago? I have a good memory, but really? I gave my best guess as to the year.
My husband and I arrived at the Dr.’s office with that wad of paperwork in hand. As this was my first visit, there was, of course, more paperwork to fill out. Once I got this done we sat to wait for me to be called in.
While sitting there I watched other patients coming and going. It was heartbreaking to hear someone checking in, being asked how they felt, and not only hearing that they were not feeling good, but seeing that they lacked energy. As we sat there, I looked around the waiting room. There on one table sits a basket of knit hats if your head is cold. Another basket holds scarves to wrap around your neck. The sign reads “free.”
Finally the door opens and this nurse, whose name is Laurie, calls my name. She introduces herself to us as she ushers us down a hall to an electronic scale. I step up. My weight is 143. I have lost 13 pounds. When I had initially gone to my NP for the swollen glands, and they weighed me, I had lost 20 pounds, so, I felt good about adding back on 7.
She takes us into an examining room, takes my pulse, blood pressure and temperature. She tells us the Dr. will be right in. We have been there now for more than an hour.
The Dr. finally comes in, chart in hand. He introduces himself, and then goes to my file. He is flipping the pages back and forth, back and forth, back and forth. Then he sits down and looks at us.
“Looking at your records, I believe you have either Chronic Lymphocytic Leukemia, or Small Lymphocytic Lymphoma. We will need to do a number of tests to narrow this down. First, we need you to have a PET CT scan; then we will need to biopsy one of your lymph nodes; and then we will need a bone marrow test.”
A lot to take in, wouldn’t you say? He tells us that what I have, which could be either one, is treatable but not curable, and it is not life threatening. More good news. Then he then decides to nix the biopsy and just do the scan and bone marrow test.
Bone marrow is where the blood cells of your body are created. He calls these the “mother blood cells.” He tells us that this will give us a good profile of the genetics and DNA of the problem.
We then head out to the gal for scheduling. We have to wait three weeks for the bone marrow test, and the imaging center will be calling me to schedule the PET CT.
We head on home knowing that we are still in the waiting mode…but at least we now have an idea of what we might be dealing with!
P.S. I will be doing more frequent posts so that I can catch up to where I am today!