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| Goodbye sweet, curly ringlets. |
It is now Wednesday, July 24. I have been in the hospital
for a week. That’s after being in the hospital for six days the previous week.
I’ve been in the hospital something like 16 out of the last 20 days. But, my
run will hopefully be ending tomorrow. As long as I can get through the night
without any fevers and nothing moves backward in my bloodwork results, then I
am going home tomorrow.
This truly is where I needed to be. In the very beginning I
was so depressed, upset that I couldn’t do anything more than lie in bed and
Craig said to me: “You’re in a cocoon right now. This is what you’re supposed
to be doing.” And that’s what it was. I’ve been in a cocoon receiving the support,
supplements, care and monitoring to bring me back to stability so that I could
emerge a butterfly (completely metaphorically – I am far from a dainty,
colorful butterfly right now.)
I will go home tomorrow and I will have one week to enjoy a
little summer. Then, next Wednesday I am back in for a second cycle of IVAC.
This time we will reduce the doses I receive of the drugs so that it is not so
harsh on me. I can expect that I’ll probably have to return to the hospital
after the six days of inpatient therapy to once again cocoon in a safe place.
IVAC Cycle 1 Recovery Highlights:
-Every day but two I received a blood product: sometimes red
blood cells, sometimes platelets, sometimes both. Thank you blood donors.
-Though I was getting daily platelet transfusions, they just
weren’t sticking. It was starting to get unnerving when every morning’s
bloodwork would reveal numbers like 5 and 6 (norm is 143) despite having
received a whole bag the night prior.
-It was just as discouraging to keep hearing my white cell
numbers being read at “0” or “less than 0.1” day after day – no movement. This put me in the "neutropenic" category, which meant that I had essentially no immune system. With that comes lots of restrictions: no fresh flowers, no fresh vegetables, no fresh fruit, no takeout.
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| Lips swelling, throat closing, mildly concerning. |
-I kept running low-grade fevers, so they ran every kind of
test and blood culture imaginable. Everything came back negative, though they
had me seen by the infectious diseases team and kept me on broad spectrum IV
antibiotics just in case. I think it’s safe to assume now that they were just
the neutropenic fevers that happen when the body’s disease fighting white cells
are super low.
-I had an incredible allergic reaction to a bag of
platelets. My body became covered in hives, all my skin became red and raised,
my upper lip swelled with a bulge on its inside, the back of my throat swelled
and I felt as if I would scratch my entire skin off my body the itch was so
intense. My sweet, sweet nurse stayed with me and talked me down as she
injected more and more Benadryl, on top of the Benadryl I had already been
pre-treated with. It seemed to take forever for the reaction to fade and I
admit I was very scared. If I didn’t have Susan with me to talk me through it I
probably would have lost it.
-To prevent reactions the next day, I was pumped with extra
IV Benadryl, super Tylenol and Pepcid. I avoided reaction but didn’t see the
rest of the day. Obviously, with all of this Benadryl surrounding daily
transfusions, most days were spent doing a whole lot of sleeping it off.
-I was able to leave the room with a mask on, so got some
laps in around the floor. I also got two free massages and a Reiki session.
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| Handfuls of hair. |
-All of my hair fell out. On Saturday night, my follicles
died and let it all go. I ran my fingers through my hair and would come back
with handfuls. Of course, once I discovered this, I couldn’t stop touching it.
I sat in my bed, not crying, just staring blankly into space as for the fourth
time I watched my hair tumble out of my head. For a few hours I wrapped it
around my fingers and pulled out chunks, made ponytails that would fall right
out and ran my hands from front to back coming away with fingers wrapped in
dark curls. The beautiful curls I had just had reshaped with a $50 haircut. I
filled a teacup with all of the hair I yanked then had to force myself to stop by
tying my headband over what remained and called for Ativan to force me to fall
asleep. The next day, Craig brought his hair clippers and finished the deal for
me. For the fourth time, I am now bald and look like a very identifiable cancer
patient. It’s disheartening. Nothing to hide behind now.
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| Frothy tea, anyone? I realize I am disgusting. |
-I got through 13 days in the hospital, including days
receiving severely strong chemo, without vomiting, nor really any nausea to
speak of. Today, the first day I’m not even hooked up to the IV pole – no
antibiotics, no fluids, no blood products and I get hit with a huge bout of
nausea. As fast as my nurse ran, the IV Zofran didn’t make it in time and she
had the pleasure of wiping me down with a cool cloth as I wretched into the
standard Pepto pink bucket – my absolute favorite. The nausea hung out for the
rest of the evening.
What Got Me Through It:
-nurses that went absolutely above and beyond. We shared a
lot of laughs and a lot of tender moments. I always felt safe and so well cared
for. I could relax knowing I was in good hands. Same goes for the Patient Care
Associates who were always there to bring me whatever I needed, to make my bed
nice and tight, and after being here so long they knew exactly what I wanted at
my bedside when I woke up and could anticipate my schedule. I didn’t have one bad experience or
clash.
-the mac and cheese, which was actually decent
-Mindless TV: Jimmy Fallon, Ellen, House Hunters
International, anything Kardashians
-piles of blankets
-lots of family time with my parents, sister, brother and
sister-in-law, even though I slept through a lot of it
-visits by my sweet, sweet friends full of laughs and
stories from the outside world
-Craig’s nightly visits after work when we’d catch up on our
days, trying to recreate what we have at home.
-FaceTimeing with Sammy Dog and seeing the pictures our
teenage neighbor would text us of her while she was taking care of her.
-Netflix movies
-A nice window view overlooking a gazebo and garden
-naps, naps and more naps
-laps around the floor with my IV pole (Jinx)
-Facebook/Pinterest/Twitter – more stalking than commenting.
-dumb magazines
-reading the cards and opening the packages Craig would
bring from home that people sent
-All the e-mails and texts of encouragement, jokes,
check-ins just to see how I was doing
My cancer pain is gone. My high fevers and night sweats have
stopped. My palpable lymph nodes feel smaller. Let’s hope these all are good
signs.
I’m ready as hell to leave tomorrow, but I believe
everything worked out as it needed to. I’m once again safe to be in the “real
world.” Being gentle with myself and keeping what my body has been through in
mind, I plan to take full advantage of this week of
freedom while I build back up and drink in the fresh air at every opportunity.
