Chemo #4

Today was #4 and I am now officially on the downhill side!

My chemo buddy today was my friend Jen, and we had fun hanging out. The time flew by.

  
Today they put the IV in my hand and it was the best one yet. You couldn’t even see where it was when they removed it.

Yeah!

And the best part is that my white blood count was high enough that I don’t need to come back tomorrow and get the Neulasta shot. It made me so sick last time. We agreed I would do it again at chemo #5 and then I might be able to skip it at #6.

Again, yeah!

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Feeling Better

I feel like a whole new person today. You know how when you start feeling better you realize just how awful it felt to be sick? And then it makes you appreciate feeling well?

Nothing hurts or aches (except residual surgery soreness), no headache and my energy is good.

It’s a great Monday.

Let’s not sugarcoat it

I feel like crap. Actually I feel like I’ve been beaten all over and I have the flu. I’ve felt like this for two days and tried to ignore it but this morning around 5:30 I realized I had a fever and needed to call the doctor.

The on call doctor sent me to the clinic this morning to see the nurse practitioner and get bloodwork to see if I have an infection.

I got a sweet parking spot because it’s a Saturday morning. Apparently less people have cancer on Saturdays. I thought the doctor was mistaken about the Saturday clinic and they were closed because it was so dark.

I was surprised to see a person at the check in desk. I checked in on the recently installed iPad electronic check-in system and she put on my ID bracelet. She gave me some paperwork in a red folder and said, “Do you remember where the chemo room is? Go back there to the nurse’s station and give this to the first nurse you see. I continued through the dark empty clinic back to the chemo room. It felt bright and cheery compared to the rest of the place.

The nurse directed me to put my paperwork in a tray and pick a chair so I looked around. There were three patients other than me. I sat near a bald younger woman in a baseball cap who was just chilling with her iPad and making phone calls.

I tried to knit, I spent some time on Pinterest. I totally eavesdropped on what was going on with the other patients.

I started talking to Lisa, the woman next to me. She was personable and interesting and I moved over in the chair next to her. Lisa is getting treated for early ovarian cancer and found out she is BRCA positive. She made a brave and smart decision and is planning a bilateral prophylactic (preventative) mastectomy later this year, possibly with the same surgeon I used. I gave her mastectomy tips, she gave me Neulasta tips. We talked about our families and work. 

Eventually the nurse practitioner walked up to her and said “Lisa, I hear you have a fever. What’s going on?”

“It’s not me, it’s her.” Lisa pointed to me. “I thought she was your friend,” said the NP.

“We just met,” I said. “Nobody ever believes I’m a chemo patient because I have hair.”

The NP looked at me. “Elizabeth, so you have a fever, what’s going on?”

“I’ve felt terrible for two days. I hurt all over and I had a 102 fever. I got it down to 101 with Advil and then added Tylenol and it went away just before I came here. I don’t know if it’s the chemo, the Neulasta or an infection. The on call doctor wanted some bloodwork.”

“Do we have a lab today?”, she asked one of the nurses.” “We are the lab,” replied the nurse.

“You don’t look like someone with a blood infection but we’ll check. And we will also do a CBC.” 

“I don’t look like someone with cancer either, and I feel worse than I look, although it’s getting much better without the fever.”

One of the nurses drew blood. It was difficult to figure out where to stick me because I’m so bruised from this week’s IV debacle, but she was great and got a vein on the first try.

I hung out with Lisa while they ran a CBC. It takes less than an hour. I was pleased to hear that my white blood cell count had increased from 7 to 44, which means the Neulasta is working. It could also mean I have an infection. I can’t wait to see what it is when I go in for chemo #4 on May 27th.

The NP gave me a prescription for a broad spectrum antibiotic and said it would take a few days for the blood cultures to be analyzed. She wished me well and I was finished.

I ended up staying a while longer talking to Lisa and I was surprised to realize that I was feeling much better. Only a few achy spots and no signs of the fever. I’m off to enjoy the weekend!

The good news is that although I run my insulin pump empty almost every day (it used to last for three days) my blood sugars are better than chemo 1&2. My blood sugar control plan is working.

Chemo #3

I’m so thankful my parents didn’t name me LaQuita Snuffin. Because when you are at the clinic and they call out that name everybody looks up. And LaQuita didn’t look like she was feeling great today.

This morning’s IV experience wasn’t good. The first attempt included fishing around and ended with a big blue hump on my forearm and a “blown” vein. That’s gonna leave a bruise. A different girl tried and successfully got it in the second time. I deserve a piece of turtle cheesecake after that.

I’m doing a good job maintaining my weight, almost to the pound. And the great news is that all my blood counts were up, white, red and platelets. The Neulasta and healthy food is working! I’ll keep getting Neulasta injections the day after each chemo treatment.

So now I’m sitting in the infusion suite with toxic chemicals dripping into me. Two of them get pushed in with a syringe through the IV and it takes 5 minutes each for the syringe pushes. Partway through the second one I noticed my arm was really burning. At first I ignored it because my arm already hurt from the IV fishing expedition and it’s ice cold from the cold chemicals. Then it got worse. I mentioned it to the nurse who was pushing the meds and she unwrapped my arm to look at it. I have a huge bandage with gauze under it from the IVs. There is a big bubble hump on my forearm and it really burns. When she was pushing the meds we think the first IV attempt was in the same vein as the current (2nd) IV and started leaking from the hole created by IV #1. So she stopped, pulled the IV and now I get lucky number three IV. Luckily none of the chemo drugs she was pushing will damage my skin tissue due to the leak.

The third IV worked well. Did I mention that I can never, ever have an IV in my right arm? I had lymph nodes removed  on the right side so all of these IV attempts were between my left elbow and wrist.

While I was having chemo, a second radiologist looked at my previous CT scan and said the lesions on my liver don’t look like metastatic cancer. I wasn’t concerned because my lymph nodes were negative but it was nice to have a second opinion.

The rest of the chemo treatment was uneventful, although I felt a little off by the end. I think it was because I had a headache this morning, but my husband told me my color was a little strange. I also noticed my blood sugar skyrocketing before the treatment even finished. Turning up my insulin pump to 300% the normal basal rate fixed it. I felt a little better after eating lunch but still went home from work early and rested and put cold packs on my arm, which really helped. It looks much better. The ice cream come I had on the way home was well deserved and helped. I don’t remember the last time I had a double scoop. It was probably when I was pregnant with my daughter ten years ago.

 

Chocolate fudge & chocolate almond in a sugar cone

 
Today’s cone was a taste test of chocolates. The chocolate almond was even better than the chocolate fudge. By the time I got home I was literally covered in ice cream drips and had to change my clothes and put stain remover all over them. I even had chocolate on the tip of my nose. At 7pm my husband saw my face and asked what what I ate that was brown. Apparently I didn’t get it all.

So overall it’s a good day, excluding the IV issues. 

And thank you, mom and dad, for giving me a normal name.

“Mom, Holden spit in the corn.”

My first grader is losing a tooth almost every week. He’s gone from perfect little white baby teeth to a silly gap-toothed smile. It’s likely that he will be missing all four top teeth and a couple on the bottom by the end of the school year. I feel like once those big teeth come in it’s the end of being a “little kid” and he is my baby.

I’m trying so hard to avoid germs because my white count was so low. Due to the diabetes I feel like I catch every little bug that goes around and combined with the chemo it’s a perfect storm for me to pick up some really nasty funk.

I open doors with my elbows and feet. I flush all public toilets with my left foot (shoe on). I practically bathe in hand sanitizer when I get back in the car every day after going into my kids school. I have a special pen in my office for other people to touch that I don’t use.

I’m also trying to eat extra healthy. So I was proud of my husband and I for throwing together a great dinner tonight without planning. Roasted chicken (Kroger rotisserie), broccolini, corn and fruit salad. The corn sounded especially good. I even put it in a bowl on the table instead of serving it from the stove.  My grandmother would be proud. So I was disappointed when I heard my daughter exclaim, “Mom, Holden just spit in the corn!” 

“What do you mean he spit in the corn?” 

“He was just talking and all this spit came out and flew everywhere and into the corn. Uck, he’s gross.”

“Holden, did you spit in the corn?”, I asked calmly.

“I was just talking and Avery did …..and I did…..and I can’t help it because my mouth is funny without teeth and I didn’t mean to but the spit just came out.” His voice pitched higher and higher and he spoke faster and faster as he talked.

I have to admit that I zone out a little when the kids start blaming each other for their own behavior. I didn’t even know what he said but I was focused on the spit corn.

“Did the spit go into the corn? Because I know it was an accident but if it did Mommy can’t eat it because she can’t share germs or get sick during chemo.”

“Yes.” The lower lip came out.

“Why was the corn in front of you? I put it over there.”

“I just wanted some.”

“Well, you will get extra because I’m not eating any.”

“I’m not eating any,” said my husband. “Me either,” chimed in my daughter.

“Well, Holden. It looks like you get all the corn tonight.”

Recovering from Chemo #2

I feel like I slept the whole weekend. Nausea was totally controlled by the meds so I ate better than last time.

My blood sugar control was much better than round one, but the fatigue has been overwhelming. Three hour naps and early bedtimes each day.

So I’m off to bed!

Neulasta

Last night I did better than after treatment 1. I turned the air conditioning down a few degrees and was able to sleep without taking any Benadryl. 

I got my first Neulasta injection this morning. And the syringe wasn’t gold, it was a disappointing blue prefilled disposable plastic. I expected it to be gold and monogrammed based on the anticipated cost.

It was an easy injection in my stomach, similar to taking an insulin injection.

I didn’t notice any side effects during the day. After work I went home to take an early evening power nap and when I was finished I noticed the back of my head was sore where it touched the pillow. I only laid down on the couch for 30 minutes so I didn’t understand it.

At night I couldn’t sleep and couldn’t figure out why. My right hip hurt. So I turned over. And my left shoulder hurt. So I turned over. And over, and over. I still can’t sleep on my stomach or totally on my sides from surgery. I still have internal sutures and sore spots. With the implants I’m not sure if stomach sleeping will be possible again.

Around 6:30 my alarm went off and I had an epiphany. They told me I might have bone and joint pain from the Neulasta. If I had remembered this last night I could have taken some Tylenol. It worked in the morning. 

Next time, along with nausea meds and insulin (so much insulin) I’ll take Tylenol.

I took 15 pills this morning.

Fifteen pills = 2 glasses of water

Chemo #2

I almost didn’t get treatment #2. This morning my pre-treatment bloodwork showed a really low white blood cell count. Much lower than they expected. That means I’m severely immunocompromised and at high risk of infection. They gave me the chemo but I have to return tomorrow for an injection of Neulasta, a white blood count booster. I’ll get it after chemo each time.

Neulasta is billed at anywhere between $3000-$10,000 per in injection. Unfreakingbelievable. It must be delivered in a golden syringe.

I saw the PA and was advised to stay away from germs for a while. I’m trying to practice germ precautions. Lots of hand sanitizer, hand washing and avoiding hugs, kisses handshakes and snotty or hacking people. You can give me an elbow bump.

The chemo infusion was pretty easy and I don’t even have an IV bruise. Treatment #1’s  bruise was huge and lasted 3 weeks. It disappeared the day before #2.

Afterward I went to work and just waited for the steroids to start increasing my blood sugar. Steroids are like diabetic kryptonite. It started going up in the evening. That’s when I discovered my pump only goes up to 200% insulin dose for a temporary basal rate. My plan is to start on chemo day 1 with a 300% basal rate and then step it back down to the normal 100% over 4-5 days. I had to create a new basal pattern and manually program it until I got below 200%. Medtronic, please increase the temp basal max!

Feeling good this evening and hoping it continues tomorrow. I put a pink streak in my hair again today for good luck.

Chemo #2

I love my BFFs

I received a lovely surprise from these ladies today. My college friends sent me a great shirt, bracelet, and a Dunkin Donuts gift card to feed my donut habit. They also included an Amazon card to feed my Kindle habit and followed up with a list of recommended trashy novels. I use the term “novel” loosely, but when you are sitting around being pumped full of toxic chemicals a trashy novel is just the thing you need 😉. 

They also wrote me a poem.

“Roses are red, violets are blue, your college friends are slackers so this is just getting to you.”

I love these ladies! We met the first day of college and have been through everything together.

Check us out then and now, 1995 and 2014. Same bar. Same counter. I was impressed we could all still get up there easily, but in my opinion we are aging well (except for the cancer thing)!