Playing the Numbers

Love these meaningless early b&w photos

There is a whole
symbolism
 and
meaning
to
the
numbers
&
letters
associated
with
cancer .

A whole shorthand that
cancer survivors/victims/patients
use to outline the course of their
disease.  A number, sometimes, that can strike fear into a heart already overladen with fear, a number that seems like a promise, a threat, a reprieve, a strand of hope suspended amid the others on a page, a warning, a sentence.  In the chat rooms, (The Colon Club is my favorite), people identify themselves with a series of letters and numbers, communicating to each other, tracing  their trail through this treatment maze, their credentials. 

ac = before meals
ADL = activities of daily life (eating, dressing, showering, etc.)
Anti-angiogenesis - the process of stopping new blood vessels from forming
APR = Abdomino-Perineal Resection (abdominoperineal resection)
Bevacizumab (Avastin) - a drug used to stop new blood vessels from forming
BID = twice a day
CBC – Complete Blood Count – see expanded explanation below
CEA - Carcino-embryonic Antigen - this is a tumor marker for Colon Cancer.
Cetuximab (Erbitux) - HELP!
CR = Complete response to chemotherapy
CR = Complete response to chemotherapy
CRC - colorectal cancer
DH - Dear Husband
DFS - disease free survival - used to describe the time that a patient is NED
DX - diagnosis
EGFR - Epithelial Growth Factor Receptor - the key to Erbitux and Vectibix's actions
FOLFIRI - chemo regimen using 5-FU, Leucovorin and Irinotecan (Camptosar)
FOLFOX - chemo regimen using 5-FU, Leucovorin, and Oxaliplatin (Eloxatin)
HIPEC - heated chemotherapy used to wash out the peritoneal/abdominal cavity
hs = at bed time
HNPCC - a genetic condition which runs in families and indicates a predisposition to GI and OB-GYN cancers.
KRAS - a part of the DNA of the cancer cell which they now know has a connection to whether the EGFR class of drugs will be effective on your cancer.
KRASmt - Mutant Type - means that the cancer's KRAS gene HAS mutated, and thus is unlikely to respond to the EGFR drugs
KRASwt - Wild Type - means that the cancer's KRAS gene has not mutated and will respond to the EGFR drugs
LAR – Low Anterior Resection – surgery used for rectal cancer
LAR = low anterior resection
LN - Lymph node
mCRC - metastatic colorectal cancer
Met - metastasis
MRD - minimal residual disease
NED - no evidence of disease
NG tube (nasogastric tube)
OS - overall survival
Oxi - shorthand for Oxaliplatin
Panitumibab (Vectibix) - HELP!
pc = after meals
PD = Progressive disease while on chemotherapy
PD = Progressive disease while on chemotherapy
PFS - progression free survival - used to describe the time that a patient is stable, or showing no worsening/progression of the disease
PR = Partial response to chemotherapy
PR = Partial response to chemotherapy
PRN - 'pro ne rata' meaning when necessary
PS - Performance Status - a term used to describe your overall ability to function, dressing yourself, eating, physical activity, etc.
PSD - peritoneal surface disease - means that the cancer has spread to the abdominal cavity and is on the surface of the organs rather than within the organs
PX - prognosis
QD = every day
QID = four times a day
QOD = every other day
RCa = rectal cancer
RFA - Radio Frequency Ablation
Temp = temporary, as in “temp ileo”
TID - three times a day
TNM – a system of staging cancer
TPE or CPE = total (or complete) pelvic exenteration (used to be called pelvic evisceration). It's complete removal of all remaining organs in the pelvis, including the bladder, and usually requires double ostomies.
TPN = total parenteral nutrition, or nutrient liquid delivered via IV or PICC line.
TX - treatment
VEGF - Vascular endothelial growth factor - the part of the cancer cell dealing with new blood vessel formation
XELIRI - Xeloda and Irinotecan
Xeloda (Capecitabine) - Oral 5-FU (pill form)
XELOX - Xeloda and Oxaliplatin - also called CAPOX for CAPecitabine and OXaliplatin

I am continually moved by the generosity of folks -- their need to share, to question, their ability to ask for help.  And here it comes.  From Seattle, Tennessee, Washington, New York, from Austrailia...the responses come tumbling in: the prayers, the wishes, the information, the gentle nudges towards facing the difficult, the impossible, the inevitable.  We create a community here, a web of people inadvertently caught, unexpectedly compromised, and with an instant membership in a club not of our choosing.

How does the shorthand not dehumanize us.? Progression-free survival. Performance status, Median time of survival.  We trace the paths of our blood chemistry: bilirubin up, white blood count down, and try to link that to how we FEEL, to how we are DOING, to how long we might have to live.  Our doctors and nurses are our translators -- we trust them to unravel these mysteries of our numbers, our blood, while knowing that they see through the surface of our disease, to the deep underlying truths. The shorthand protects them, too, from having to confront these truths too clearly. 

I have been in this Colon Club (dx: 2010) for 19 months, but some have been in this club for years: DX 2004, DX 1988.  These are the success stories, immortalized in the Colon Calendar. Quite a Pin-Up!  I look up the numbers to see what they could mean, and try to unravel the hidden mathematics of disease. CEA 463. I feel good, though.