The Skinny

I showed up at 1:30 as instructed, and was a bit startled to have a lab form shoved under my nose and be directed to go get blood drawn before even seeing the doctor. OK. I can do that. Shoot, I wore a long sleeved sweater blouse that doesn't have roll up sleeves. I will have to strip to present a vein. Oh, well.

I return to the cancer wing and wait to be called. Predictably, my blood pressure is 188 over something, which they are used to and ignore. I am ushered into a different examination room and before I even get a chance to sit down, someone enters and introduces herself as a social worker. She hands me her card and tells me she is always available to talk to if I need someone. Yikes! I didn't get that when I started seeing the other oncologist. What is this?

I immediately like the woman who introduced herself as Faith - what a great name for a doctor - especially an oncologist! She told me that she was going to say words that would sound scary, but that I needn't be afraid and she would explain why. Here's what she said:

You have an advanced stage level 1 follicular lymphoma. It is terminal and there is no cure. That being said, it is much more likely that you will die of old age before this cancer kills you. Any patient in this clinic would trade diagnoses with you in a heartbeat. If you have to have cancer, this is the least problematic one to have.

Its a very passive non intrusive cancer, and we say advanced stage because it has spread throughout your entire body. Looking back at all your PET scans and MRIs over the last three years, I can track a definite progression from just one tiny spot to the ubiquity I have now. Still, even had we known what we were dealing with, there was nothing that we could have done.

As I described the symptoms I experience, she nodded her head and said I just described the lymphoma. There are periods of waxing when my system ramps up and the cancer becomes active, then it just as unpredictably ramps down or wanes. Wherever the lymphocytes travel, they bring cancer with them.

Problems erupt if during the waxing episodes a swollen gland presses on internal organs which can cause damage and pain. So we watch for that. And we track how my body is experiencing the disease. If a waxing episode gets stuck and doesn't ramp down, then there is intervention. If an internal organ gets damaged, there are ramifications. Kidneys are susceptible.

Its possible that this cancer is a result of the other cancer. Current thinking is that there are links. The odd factor is the spine spot. They will do the biopsy Friday (please pray!) to see if its rectal cancer related, an entirely new cancer (which would indicate that I am cancer prone and mean I could develop other cancers as well) or related to the lymphoma.

Given my age and the wars my body has already been through, they will not try the "restart" method they sometimes use on younger patients. Any questions?

Oh, one more thing. No more PET scans or MRIs. Lymphoma shows up just fine on CAT scans without contrast, so they will do one 3 weeks after the bone biopsy (which btw takes a week to process) to set up a baseline, then repeat every 6 MONTHS!!!! unless there is some extenuating complication that needs to be looked at.

She fills out reams of paperwork and pushes it at me across the desk. She shakes my hand and shows me out. Whew! My head is filled with stuff to sort out and ponder. It sounds more like walking a tightrope than a walk in the park. OK. Let the games begin. Or continue, now that I know the rules.