After months of intense chemotherapy and frequent hospital stays, things are calming down somewhat and Jenna is stable. Here’s a glimpse of what our “new normal” looks like, Sesame Street style… = )
A. Albumin infusions every month or so.
B. Blood drawn weekly, sometimes even bi-weekly, instead of twice a week.
C. Giving Cyclophosphamide chemo at home each day gives me the creeps.
D. We have to don special (purple) gloves to change Jenna’s diapers and dispose of them in chemo waste containers.
E. Only one emergency room visit since March and we were able to go home after a few hours! EEEEE!
F. Fluid restriction diet is no fun.
G. Jenna’s hair, eyebrows and eyelashes are growing and growing.
H. We’re getting out of the house more and Jenna is much happier.
I. Rebuilding Jenna’s immune system.
J. Jenna is just about 31″ tall. Judging by this, she is growing again.
K. Rekindling family relationships, friendships, hobbies and business.
L. Spending more time with the Liver doctors.
M. Many medicines to give each day and night, but no more at midnight.
N. No longer neutropenic.
O. Jenna loves to play outside.
P. Prednisone “pulses” every 3 weeks wreak havoc.
Q. Quieter nights.
S. We sterilize stews of syringes.
T. Taking life a day at a time.
U. Our home “facility” is understaffed and small staff underpaid (haha). A personal chef would be useful.
V. Hospital visits are much fewer – only one day every week or so!
W. White blood cells still waning.
Y. About a year of chemotherapy left.
Z. Enjoying a few more zzzzzzzzzzzzzzs…
ABCs aside, it’s been surprisingly challenging to go from a sort of DEFCON 1 position, on full-alert 24/7 for months and months, to somewhere between DEFCON 3 and 4, still on alert with some peace, and I have finally unpacked my suitcase. We’ve gone from a long period of being in complete survival mode, living in the “cancer world”, to…… what?… We’re still trying to figure it out.
The hardest thing about finding a new normal is reintegrating with people. Even though Jenna is stable, my life still revolves around her care, her medications, tube feedings and doctor visits. And she is presumably on the path to a liver transplant. This is far from over.
So what do I talk about when I’m with “regular” people? This is my life, and, I just don’t feel like myself anymore. This journey has changed me and I’m not quite clear who I am now or how to relate to people naturally anymore. I feel lost, much like I did after my son was born, having gone through that amazing/traumatic experience of giving birth to him only to find I needed to find a new place for myself on the other side. A couple of moms I’ve met through the hospital said moving and starting over was the best way for them to find their new normal, but I don’t think that would work for me. I need to have something familiar, even if it’s just the view out my windows.
On the bright side, Jenna’s not neutropenic anymore so we can safely get out more. It’s a challenge to coordinate everything with her feeding tube and timing her medications just right, and I’m often overwhelmed by weariness, but we do get out. We go for family bike rides, we eat popsicles on the front porch, we visit the library where Jenna toddles about screeching with delight, we walk in the rain. Sometimes we go to community events. We even go grocery shopping on days when it’s busy and let Jenna sit in the cart! I know… daring!
One of the oncologists was heard to have said — We saved your child’s life so she can live…. We’re not really doing much, but we are living life again and it sure is nice.