My Chemo Experience - Hoping It Will Help You

This post is only to share my chemo experience with those
just beginning. I had so many questions going in to treatment and have to think
they’re pretty common amongst our group. I found my experience was very
middle-of-the-ground when compared to the others who started chemo with me in
October 2014, some had it easier while others had a more difficult time. It is
so individual.

I hope someone can gain some hope from my experience.

My cytoxan and taxotere treatments were every 3^rd Wednesday afternoon. Adriamycin was nixed due to prior heart disease.

Dexamethasone 4 mg. prescribed for 1 day before and after
treatment. This becomes important later.

I was always was able to work on Days 1 and 2 following the
infusion (Thursday & Friday).

My side effects always began on Day 3 (Saturday) with nausea,
fatigue, general unwell feeling. I was so weak and depleted I could only sit in
my lazy boy Saturday through Wednesday.

Compazine was no help, Zofran worked like a charm. I couldn’t
recognize the nausea though, it wasn’t the usual “I’m going to hurl right now”
feeling so I waited too long to medicate. My biggest regret.

I was so unprepared for and repulsed by the absent taste
buds and lack of appetite that I ended up needing rehydration a week after treatment
#1. I refused to drink, even water made me ill. Such a chemo rookie!

Except for treatment #4 I was clear enough mentally to work
from home ½ day on Tuesday afternoons and full day on Wednesdays. I was able to
resume full-time work in the office on Thursdays of the week following infusion
(Day 8).

I needed anti-nausea meds for 10 days after each infusion. I
struggled recognizing the nausea, it was such an odd sensation for me. I finally
figured out with treatment #5 to just take the Zofran every 8 hours whether I
thought I needed it or not. This really made #5 and #6 much more tolerable.

My hair began to shed 12 days after 1st infusion and I
shaved my head the same day. I wore head scarves/caps exclusively. I preferred
the simple and stretchy knits vs. the prettier silky wraps. Knits stayed in
place better, were warmer and just all-around more comfortable to me. I usually
wore a cap to bed to stay warm.

My eyebrows dropped out more slowly. Just after my last
treatment (#6), I still have the inner halves of each brow, the outer halves
are gone. My eyelashes have thinned considerably but I still have a nice amount
left.

My vision became impaired for several days after the
infusions to the point I could not see well enough to read or watch television.
Everything was terribly blurred but it returned to baseline before the next treatment.
I had a lot of tearing from my eyes too, had to always have a clean tissue to
wipe them away.

I developed a transient neuropathy in my feet (soles/toes)
and fingertips with almost every treatment. My finger and toe nails becoming
ultra-sensitive where even the blankets resting on my toes caused discomfort. The
burning/tingling/numbness started about a week after infusion and lasted about
4 or 5 days. It was never awful but it was always noticeable.

My skin dried out in general but my feet have become
positively repulsive. My heels are dry and cracked with layers of callous. Aquaphor helped. A pedicure will heal

My fingernails have changed. They have a yellow-brown color
now. The first 3 fingers on each hand have developed 4 deep horizontal ridges
at the base of the nails. The last 3 fingers on each hand have begun to lift
away from the nailbed, from tip to base. A friend told me she lost 5 nails
during treatment but there was no pain when her nails lifted away from her nail
bed. I have no on-going issues with my toenails.

They Say It’s Cumulative.

Treatment # 4

Right on cue, beginning the Saturday after infusion, I began
to sleep. I slept like a zombie for 5 days. I couldn’t think clearly enough to
process even a simple question. I slept 24/7 in the same chair and moved my arm
only to drink fluids and my legs only to go to the bathroom. I’d sit back down
with no intention of sleeping and awaken 4 hours later. I couldn’t even
identify this amount of unawareness was abnormal. But I did know that I had to
drink!

I developed the worst case of mucositis, from stem to stern,
following treatment #4. The minor mouth sores, horrible esophageal pain and
diarrhea for 24 hours like I’ve never experienced or seen (old ER nurse). I kept
myself hydrated and didn’t need treatment for that but the excruciating esophageal
pain being referred to my mid-chest sent me to the ER and got me admitted for
testing to rule out a heart problem. The esophagitis was short-lived, lasting
about 3 days. No symptoms since.

Treatment #5

I asked my MO’s nurse practitioner if the steroids could be
taken longer than just one day after the infusion. “Sure, let me write for 2
extra days.” So I took them through Saturday instead of Thursday. I had no side
effects until Monday, but the SEs only lasted through Wednesday and I was back
to work on Thursday as usual. Analysis: 2 extra days of steroids resulted in 2 less
days of feeling bad for me.

Treatment #6

I asked my MO “if the steroids can keep the SEs (fatigue/malaise)
at bay, why can’t I take steroids until my bad 5 days have passed?” My MO promptly
wrote me a script to cover all my bad days. What?!? Why didn’t I know this was
possible from the beginning, with treatment #1? Here I sit on Day 5 post-infusion with #6 and
I feel pretty good. I’m awake, thinking, drinking and eating a bit. I’m well
enough that I could go to work but we have a Snow Emergency and all roads are
closed. So as soon as the steroids were finished the side effects set in. They lasted 8 days! I should have foregone the extra days of steroids and just got the misery over with.

How I Survived It All

I drank lots of fluids for several days after a
treatment. I looked to my urine in the toilet bowl, if I could see any color I
wasn’t drinking enough.

Hard sour candy relieved the ever present nasty
taste in my mouth.

For about 10 days after a treatment I couldn’t
think, hear, see or smell food without receiving a negative response from my
brain. That was my nausea. When I controlled the nausea I controlled my
appetite.

I still had to take it slow though. I was only
able to tolerate foods with very certain textures and temperatures. Only very
hot or very cold items could enter my mouth with any degree of acceptance. Warm
just couldn’t make the cut.

I found if I kept food off my tongue and on my
teeth/cheeks it was even easier to accept.

I liked hot, hot cinnamon or orange teas. My
usual morning coffee was out until about Day 5, I just couldn’t handle it.

I found juicy, moist foods were more tolerable.
For the first five days after an infusion I survived on mandarin oranges and
fresh pineapple. Then I could introduce popsicles, ice cream, pudding and jello
cups, eggs, cottage cheese, oatmeal, creamy soups, baked potatoes w lots of
butter etc. I couldn’t handle anything dry e.g. crackers, toast, pizza, etc. it
was like eating cardboard.

Whatever it was that I ate had to appeal to me
at that very moment. I couldn’t plan what I would eat later that day so I
declined all offers from friends to cook for me. I didn’t want their efforts to
go to waste because I couldn’t tolerate their dish upon its arrival. And I
simply wasn’t going to eat what made me feel worse.

I credit Arm & Hammer’s Peroxi-Care
toothpaste for the absence of mouth sores. Or maybe it was just luck.

Oil of Olay face moisturizer and Oil of Olay
In-Shower skin moisturizer saved my hide.

I did nothing special for my hair and used my
Neutrogena face wash to cleanse my scalp.

I did nothing special for either my finger or
toe nails.

I worked hard to stay positive. It wasn’t easy. I
always dreaded the next treatment but reminded myself I was one step closer to being
finished. I cried when I had to and laughed when I could. I did what I needed
to do to get through; even declining invites to go to movies, dinners, for drives
and shopping. If I didn’t want to do it, I didn’t do it. And mostly I just
preferred to sit my weakened, depleted body in my chair. That’s where I wanted to
be. I kept my eye on the prize and ignored the journey. The journey is a tough
one.

Know though that it can be done, so many have gone before us and gotten through. You can do this too and you can do it well. Wishing you each only the best!