Three weeks until Jenna’s official end of chemo date and we’ve been counting down the days …… On March 14 we will be finished with this phase of her treatment. We fluctuate between feeling excited about being almost finished, and scared to have her chemo end. The doctors tell us this is very normal.
I also find myself feeling afraid to be excited. What if, when they do all the end of treatment tests, biopsies and x-rays, they find the LCH has come back? It’s not unheard of. And what if she relapses a few months after chemo ends? LCH recurs in 33% of all cases. Then we start over and her liver is damaged further by chemo and she has to wait longer to be evaluated for a liver transplant, and, and, and… And I could go on and on… Except I can’t. I just can’t let myself “entertain” those kinds of thoughts.
Instead, I remind myself that LCH never returns in 67% of all cases. And I distract myself by thinking about things like… how many days have we spent in the hospital in the past 18 months? How many mLs of medication has she received in 18 months? How many miles have we put on our car driving back and forth from the hospital? How many tubes of Calmoseptine, barrier paste and other diaper rash creams have we used in 18 months? How many cans of formula have we gone through? How many hospital staff members do we know by name, by sight? And how many of them know us by name or sight? How many blood draws has Jenna had?… Random things that are pointless to know but if calculated and assembled would somehow make our experience seem less surreal, more normal, like gathering information to file taxes each year.
I also think about silly things, like what I’ve started carrying in my purse regularly since Jenna’s chemo began, or all the new vocabulary words I’ve learned in the past 18 months. (I’ll share these fascinating lists at the end of this post, like recipes at the end of a fiction book about a chef.)
But mostly I think…
“HOLY S@#&!!!! We’re almost FINISHED!!!! WOO-HOO!!!!!!!!”
Things I carry in my purse now because Jenna has been on chemo:
- A digital thermometer (you never know when you’re out and about if she might get a fever)
- A small bottle of bubbles (to distract Jenna during various procedures)
- Numbing cream (to apply to her port site before blood draws)
- A large container of anti-bacterial wipes, a travel-size bottle of hand sanitizer AND a small bottle of foaming hand antiseptic
- Rubber gloves (for changing diapers)
(I also have 13 different hospital and home care phone numbers as well as 4 different pharmacy numbers programmed into my cell phone.)
26 new words I’ve learned in the last 18 months:
- Langerhans’ Cells
- Vinblastine (it sounds like a weapon doesn’t it?)
- Neutropenia (or Neutropenic)
- Scrip (i.e. prescription)
- Sclerosing Cholangitis
- Fibrosis (or Cirrhosis)
- Portal Hypertension
- Lasex (also known as Furosemide)
- Ondansetron (also known as Zofran)
That’s 107 syllables in case you weren’t counting. Don’t you feel smarter already? Well, probably not if you’re a doctor or nurse, but if you’re just a regular person like me, well……