I had spent the night at my parents the night before so it would easier getting out the door and to Hillman in the morning. Mom and I were up early, making sure she everything packed in her "chemo bag."
Snacks, blanket, book, phone, iPad, chargers, water.
It was 7am on Thursday, May 20, 2021, and we were all set and headed to Shadyside.
We got to Hillman at 8am, and we went right to the lab for blood work.
Now I've been on edge since Mom was diagnosed. The amount of time it takes for me to go from zero to pissed off has drastically decreased, and I am a loud and proud advocate for my mother. I mention this because she came back from the lab and said that the bloodwork had hurt. The whole purpose of getting a port is so they don't have to hurt you with a needle at each visit for bloodwork or chemo.
Apparently Mom had a newbie nurse who haphazardly removed the bandage from her chest to access the port. She didn't use adhesive dissolver, which resulted in a horrible tear of Mom's paper thin skin. SERIOUSLY? Even a toddler would know to be extra gentle with thin skin and adhesive. We were too early in her treatment for me to cause a scene, and I know it's not a huge deal in the grand scheme of things, but c'mon!
Her bloodwork came back pretty good. YAY! Her WBC (White Blood Cells) were no longer fighting C. diff 24/7, and even her hemoglobin was looking good.
Her CEA did go up to a 4.1, but even if it would've been 400, the treatment is still the same.
Here are her CEA Levels so far:
APRIL 8 - 26.9
APRIL 26 - 6.2
MAY 9 - 3.3
MAY 20 - 4.1
After her lab work, we met with Toni Fontana, Dr. Bahary's PA, and we talked about what to expect from treatment, as far as side effects. Toni is so smart, professional, empathetic, and efficient. We are huge fans of hers!
Next up was chemo.
They took Mom back to a room where 3 other patients were already having their treatments. They got her all set up and started a bag of saline. She's almost always dehydrated because of the chronic C. diff, which is not good, so I was happy they started with fluids. The anti-nausea infusions came next (Cinvanti - an extended release anti-nausea med that will work for 2-3 days), and then it was time to start chemo.
It was almost 1pm, and we had been there since 8am. The next 2 hours included an infusion of Oxaliplatin and Leucovorin (2 of the 3 chemo drugs).
Because of Covid, I was not allowed to sit with her for her chemo, which is super upsetting, but the nurse did come out to bring me back at one point so she could go over some at-home instructions.
We hadn't realized until a week prior that they would hook her up to a take-home pump with Flourouracil (the 3rd chemo drug, appropriately referred to as 5FU), put it in a fanny pack, and send us home with a Haz-Mat suit.
Yes folks, I said Haz-Mat suit (and goggles). I hadn't realized just how much went into taking home a chemo pump until I was handed a sharps container, the Haz-Mat suit, and bags upon bags of supplies, "just in case."
Her nurse Elizabeth was giving instructions, and I was typing as quickly as I could...
Your mom was given a steroid. She may have trouble sleeping.
Have her take Zofran as soon as she gets home, and have her take Compazine before bed. She can take them around the same time but make sure it's at least 30 minutes apart.
Stay ahead of the nausea.
One of the main side effects of FOLFOX is neuropathy - severe cold sensitivity will likely happen today. Her Raynaud's will make it more pronounced.
Have her drink room temperature water.
The pump will infuse over 46 hours.
Home health nurse will come on Saturday to remove the pump 46 hours later.
If anything goes wrong with the pump, call the number on the pump.
The day the pump comes off is when she will be most tired (Saturday and Sunday). After Sunday - by early to mid week - she’ll start to feel okay.
She can shower when pump is off.
Here is the number for the 24 hour line if you need to reach us with any concerns in the evenings or on weekends.
Here is the number to reach Dr. Bahary if it's M-F.
Me: "Wait, when do I call the first number?"
Nurse: "If she's feeling out of it, having nausea, diarrhea, vomiting, or the Zofran isn't working."
MY HEAD WAS SPINNING.
And then the nurse told Mom,
"Grant yourself some grace," and boom. I needed to apply that to myself in that moment, and I did. Thank you Nurse Elizabeth.
She reminded her to pace herself and to only do what she could.
She said she'd have appetite changes and her mouth might taste metallic and get sores
She went over the bloodwork and explained that chemo drops blood count. The red blood cells would be lower, as would platelets, and white blood cells, which would all increase the chance for infection.
If we think a fever is brewing, take her temperature. If it's above 100.4, call.
(Wait, which number do I call if that happens? There were so many numbers.)
More instructions:
Watch for new cough or symptoms of UTO, (I don't know what UTO is and haven't had a second to spare to Google it).
Your mom has a needle in her chest - baby it while the pump is on.
Just a reminder, no shower until pump comes off.
If she gets a headache or if there are any other changes, call to let them know.
Chemo will work through her body for about a week.
Be careful for the next week.
Wash clothing separately from everyone else's.
If the infusion ends before the home health nurse gets there, take out the battery.
If swelling or redness gets worse, call.
(I really hope I don't need to call)
I was about to organize all the different numbers I was given to call in case something happens when she said, "IF THERE ARE ANY PROBLEMS WITH THE PORT OR IF NEEDLE COMES OUT, CALL 911."
I held my Haz-Mat suit and supplies a little more tightly and prayed that I wouldn't need the suit or any of the numbers.
I went back out to the waiting room and watched people pass by. Many of them fighting for their lives, just like my mom. I heard a bell ring in the chemo room, signaling that someone had just finished their last round of chemo. My eyes stung with tears.
There was so much hope all around me.
Nurse Elizabeth walked out with mom (and my sharps container), and just like that, Round 1 was done. It was 4:30 p.m. when we got in the car to head home.
8 1/2 hours complete.
11 more rounds to go.
Her next treatment is June 3 at 8am.
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