I’ve almost completed my first round of chemo! It feels great having a feel for what
to expect moving forward. Last
Saturday and Sunday, days 13 and 14, were my most fatigued, so far. Sunday, I attended Sacrament meeting,
and then returned home and rested the remaining part of the day. Monday my energy level was much
improved. My energy level has
continued to improve throughout this week, but even as the week draws to a
close, what is spoken of as the strongest week of the chemo cycle is still a
far cry from my normal energy levels.
I’m learning to prioritize and allow a resting time in the middle of the
day. Monday morning they will do surgery to put in a port for easy vein access, and then I'll receive my 2nd dose of chemo.
This week’s adventures were all about hair. Monday night for Family Home Evening,
we skyped Garrett and Kirsten in (Weston was at work and missed out on the
fun). Since Sunday, my hair was
loosening. If you grabbed a pinch
of it and pulled, it would pretty much all come out. It was interesting and intriguing to me, but grossed my kids
out, and they were appalled when I’d demonstrate this trick for their
friends. So, Monday seemed like a
great day to take control of the hair loss issue. Thankfully, a friend had told me the stubble can hurt and
make it hard to sleep, so she suggested cutting it off a very short length but
not shaving it. So, surrounded by
family, holding Scott’s hand, Courtney took the clippers with a #8 guard on
them (I think that’s 2” in length), and she gave me a really short hair
cut. Afterwards I looked a bit
like Ellen Degeneres. It was a
great additional stair step to baldness.
Tuesday was the “Shave the Date” party. It was SO much fun! On Monday, realizing that we didn’t
have anything fun for little kids to play on outside, I called a party supply
rental place to see if they had anything available for the next day. They did!! At 11:00 a.m., they delivered a bounce house, cotton candy
machine, and a snow cone machine.
They set it all up for us, showed Heath how to work the cotton candy and
snow cone machines, and later returned at 6:00 p.m. to take it all away! At noon, people started arriving. I was overwhelmed by the turnout. There were probably 75-100 fun hats and
wigs worn by wonderful friends!
Cars were parked all along the road. There were hats of all kinds and a few wigs! It was so much fun. We ate lunch, visited, laughed, bounced, ate cotton candy, and watched “Tangled.” Heath made cotton candy and snow cones the entire time,
wearing a fuzzy hat that looked like cotton candy. Courtney was a photographer and concessions helper, and Scott Jr.
supervised the dog petting. At
2:00, the crowds disappeared once everything was put away. My energy levels (aided by party adrenaline)
were still holding strong, so I bounced in the bounce house and had fun enjoying
the cool breezes. It was a perfect
day with temperatures in the 70’s.
The party was celebrated virtually too! Lots of friends and family from all over the country emailed or texted photos of themselves wearing fun hats, wigs, or baldness. Photos are still arriving daily. We’ll be partying for 9 months! It was a great day that brought lots of joy. I’ll revisit the photos and memories of that day throughout this mountain climb!
The party was celebrated virtually too! Lots of friends and family from all over the country emailed or texted photos of themselves wearing fun hats, wigs, or baldness. Photos are still arriving daily. We’ll be partying for 9 months! It was a great day that brought lots of joy. I’ll revisit the photos and memories of that day throughout this mountain climb!
Wednesday night, Courtney decided it would be really fun to
dye my hair hot pink. There wasn’t
much of it, and I knew it wouldn’t last long, so we bought some temporary hot
pink hair color. It looked like
hot pink mascara that you stroke onto your hair, and then it can wash out (or
fall out). It was fun trying
something outlandish. Luckily the
kids took some photos that night.
Thursday morning, I woke up to a pillow case full of
hair. It looked like someone had
brushed a shedding dog and left all of the hairs on the pillow. I shampooed my hair; my hands were filled with hair multiple times. It felt like there would be no hair left afterwards. The shower drain had tons of hair. After
drying my head and looking in the mirror, I was more bald than “haired.” It was still shedding very easily, so
to get it over with, I used the trimmer part of Scott’s electric razor and
trimmed the rest of it off. It’s
an adjustment, seeing your reflection with no hair.
When they said it would fall out anywhere between 2-3 weeks after the
first chemo treatment, I didn’t realize it would literally be 2 ½ weeks after,
all in one day! The pink hair
lasted less than 12 hours! I’m now
bald! I now look like a cancer
patient. Some of the positive things
are: at least so far, I still have
my eye brows, eye lashes, and side burns;
I’ll save money on hair products; I have a nice assortment of hats, scarves, and wigs to choose from; and I can decide what type of hair I’m in the mood for
each day. I would highly recommend baby steps to baldness. Gradually going from longer hair to shorter and shorter hair
was helpful. Having fun along the
way was helpful too. But the
reality is, no matter how well you prepare and how fun you try to make it, the
initial shock of baldness so quickly is still an emotional event. I only cried for a minute or two both
Thursday and Friday mornings, but from all I read and hear, that’s totally
normal, and it was healthy to let some tears fall out along with the hair. I’m doing great now.
Friday night has been our date night for the past 34 years
(minus 2 years when Scott was on his mission in Tokyo). We met at a church Christmas dance when
we were 14. We couldn’t date until
we were 16, but from that point on, pretty much every Friday night since we go
on a date. When we had young kids
and no money, we always found friends to swap date nights with. Friday nights are the highlight of our
week. Last week, I didn’t
prioritize my time well. I’d been
wig shopping during the day and had not allowed rest time before our date. I was worn out by the time we finished
our early dinner, so we headed home early. It was still nice, but shortened our time together. This Friday, I was careful to rest in
the afternoon and not do anything strenuous before our date. If I ran out of energy, I’d at least
know I’d given it my best effort.
I was able to have dinner, go to a movie, AND then go out for shave ice
(which seemed appropriate considering this week of shaving bald heads).
It was my first public outing in my "Sunday" wig (the wig insurance paid for, the more serious one). I was self-conscious, worrying if it
looked natural, if I had it on evenly, and how it looked in back, where I
couldn’t check it. While
we were at the shave ice stand in downtown Fishers, there was a lady sitting on
a bench with her husband. We were
standing on the sidewalk, walking towards the car, eating out treat, and she
said, “I love your hair. I love
the way it goes in at the back, it’s really cute.” I told her thank you and smiled. As we continued walking and got closer to the car, tears of
joy fell from my eyes. That was
probably the nicest thing anyone had ever said to me. A complete stranger told me something so kind. She had no idea how much I needed to
hear that, especially from a complete stranger that had no idea what I was
going through. As we drove by, I
told Scott, “I have to look and make sure she is still there, because I think
she was an angel sent to make my day.”
She was indeed still there.
And she was an angel. She
taught me how important it is to say kind things to complete strangers. Kind words can never go wrong, but
sometimes they may be something that someone really needs to hear, and perhaps
we are the only one that recognizes the prompting to say them. This complete stranger made a huge
difference for me. I should have
taken the time to tell her how much it meant, but I was too emotionally
beaming, and my simple thank you carried a lot more depth than she will ever
know.
Sobbing over here! This was the most touching post! From the party to the date night tradition to the sweet angel helping you in such a tough time. I have been so touched! Life is so tough sometimes! This is a reminder that He is always there.
ReplyDeleteYOU WILL LOVE YOUR LIFE PORT!! No more digging or fishing for a vein. So here are my Life port "helpful hints". #1-Make sure that your Lifeport is "flushed" once a month with a heparin flush to keep it from getting clogged. #2- each time blood is drawn from it, chemo is given through it...or rather each time it is "accessed"...once they are done...gently ask the nurse.."is that heparin flush you're putting in?" (It serves as a gentle reminder). Report any redness or swelling around the area. You can get a numbing cream to rub on the lifeport site...about 30-45 minutes prior to access. It will help to not feel the pinch of the needle. Learn what size or "inch" needle is best for your lifeport...1 inch? ,,,,1 1/2 inch? You will find this out in time. Once, you find out what size works best for you...you can let any new nurse know what size needle you like....by saying..."I really like the 1 inch needle best, if you can use that." Also, don't know if you've been told this...but sometimes the hair that grows back is totally opposite from what you had before. So you might end up with black curly hair...or perhaps...Red...wavy hair....By the way....I totally dig you in short pink hair!! How is it that you are SOOOO gorgeous....no matter how you wear it!?!? Fabulous party ideas...."TANGLED"....LOVE IT!!
ReplyDeleteThank you for the tips and enthusiasm about a port. I've been leery but haven't found anyone to say, "No, don't do it." Everyone has said I will be glad I did it, esp. when the weekly chemo for 12 weeks starts up.
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