Big, scary diagnosis + WFT is blood cancer?
When I was 19 I was gifted this book called The Book of Answers. It’s just that. 300+ pages of answers, like a chatty magic 8 ball. I consult it only when I’m truly seeking an answer I don’t have and need help. It’s always told the truth. Like birthday wishes, I can’t share what I asked it just know it was exactly what I needed to read.
This is the scariest post I’ve ever written. I haven’t wanted to look directly at this stuff in fear that in looking at it will I’ll somehow manifest the worst-case scenario. Some alchemy of time + an encouraging PET scan + reaching over halfway through treatment + my own moxie and I’m ready. From the beginning, I said these chronicles are for me. Today, I take my head out of the sand and look right at the truth of things, welcoming the fear instead of pushing back against it. I also said these stories are for you. So many people stop at calling a person with cancer ‘inspiring’ and don’t do the work to understand the life of a cancer patient or cancer itself. I know I didn’t before my world was annihilated by a diagnosis. May this serve as an education for you, the reader. Thank you for your curiosity. We got this.
MY DIAGNOSIS
Double hit lymphoma
High-grade B-Cell lymphoma with MYC and BCL-2 Rearrangements
Follicular lymphoma, low grade, follicular pattern
Lymphoma involves small bowel, colon, appendix, lymph nodes
Positive for TDT
Proliferation index (KI-67): 70%
BIG, SCARY PATHOLOGY SYNOPSIS
“Lymphoma cells are positive for TdT. It has been reported that high-grade B-cell lymphoma with TdT expression have an aggressive clinical course and poor outcome despite appropriate therapy.”
WHAT DOES THIS MEAN?
I’m the underdog. I love being the underdog. Bring it on.
Every decision I make from now until the end of my life (a long time from now) will be in service to cultivating my ‘terrain’ so it’s an anti-promoter of cancer. How I eat, sleep, move, meditate, the people around me, the work I engage with, all of it urgent and important and mindful.*
Looking at it changes nothing. I still do the treatment and the treatment shows it’s working. I accept the things I cannot change, have the courage to change the things I can, and practice the wisdom of knowing the difference.
WHAT IS LYMPHOMA?
Lymphoma is a cancer that affects lymphocytes, a type of white blood cell.
Lymphocytes travel through the blood and lymphatic system to defend the body against foreign invaders like bacteria and viruses.
Lymphomas usually develop when a change occurs within a lymphocyte, causing the abnormal cell to replicate faster than, or live longer than, a normal lymphocyte. They can travel through the blood and lymphatic system and spread and grow in many parts of the body, including the lymph nodes, spleen, bone marrow, and other organs.
There are 3 categories: Chronic or Small lymphocytic leukemia, Hodkin’s, and non-Hodkins. I am beating non-Hodkin’s lymphoma (NHL).
There are many sub-types of non-Hodkin’s lymphoma which is why genetic testing of tumors and/or bone marrow is so critical as it informs the best treatment plan. NHL is categorized by aggressive or indolent (fast v slow-moving) and if it’s impacting b-cells or t-cells. In my case, ‘double hit’ means I had a slow-moving or indolent follicular type that mutated/transformed into a fast-moving b-cell type.
Treatment options are specific to your sub-type, response to treatment and progress if/when one would have NHL reoccurrence. The most common treatments are chemotherapy, immunotherapy, radiation, stem cell transplants, and bone marrow transplants. I am being treated with 6 cycles of aggressive chemotherapy called R-EPOCH. There are also a number of clinical trials for NHL and my specific diagnosis at hospitals like MD Anderson in Houston. If plan “A” doesn’t work out, we just keep trucking.
HOW DO YOU KNOW YOU’RE IN REMISSION?
After the 6th cycle, I’ll have another PET scan. If there are no bright spots on the scan and blood tests normalize, I will be considered in remission. If not, we move onto more cycles or one of the treatment options above.
I will return to my oncologist every 2-3 months for a checkup, blood test, and potentially a scan. This will be for the first 1-2 years then it will go to 6-month check-ups. Timing will all depend on my symptoms, so my own body awareness will be essential.
Phew. Okay. We did it. We looked at it together. Doing so changes nothing. I still control what I can control. There are so many things to reflect and write about in this. “Scanxiety.” Infertility. Being 40, a sweet spot where AYA (adolescent young adult) support groups and programs don’t support me but I’m also not elderly or retired. Every day I encounter something new physically or mentally I’ve never faced before. But now, I’m facing it. Step one of any transformative program, admitting that yes, I have a problem. But if there is a problem - yo! - I’ll solve it.
Footnotes:
* It was always this way, even BC (before cancer). Now, I’m just awake to it. This truth - the greatest gift of this whole shitty thing.
The early days of looking away. I will again, and that’s okay. (dope accidently rhyme)