Friday, August 3, 2018

Chemotherapy update

I thought I'd try to keep a log here on my personal blog of my experience of chemotherapy. I'm too shy to do a video log, but I found it so helpful to read through other people's accounts of their chemotherapy experience, I decided to add my own thoughts, for anyone who is curious and wants some insight into the process.

I am having 4 doses of AC, every other week, followed by 12 weekly treatments of Taxol.

My First Chemo Treatment

Everything went well, and I was out of the doctor's office within 3 hours. My understanding is I had a steroid and several anti-nausea meds, in addition to the chemo. Aside from the very last thing they gave me, which gave me a weird, prickly feeling in my nose (like when your head goes underwater and water goes up your nose) I didn't feel anything at all during treatment. I was alert, awake, and very hungry during and immediately afterward.

About 3 hours later, the nausea and dizziness kicked in. I had 2 anti-nausea meds to take - one is Zofran, a 12 hour med, and another to take if that one wasn't working. I was so nauseated that I took the Zofran first, then the other within an hour. Neither helped and I spent the next 8 hours feeling like I was about to throw up, although I never did. This was my most miserable evening - I tried everything to distract myself - reading, music, tv, and nothing helped - I just had to wait it out. In addition, 1 of these 2 meds gave me mild hallucinations, which were not pleasant.

Day 2
The next morning I felt better, though still dizzy and lightheaded. My stomach felt fluttery - like I was about to feel sick, and I had very little desire to eat. Even the thought of food made me feel like I might be sick, and I didn't want to smell food. I went back to the doctor to get a Neulasta shot - that went very quickly. I felt lightheaded afterwards, but that could have been just the chemo. The nurse told me that people who take Claritin in addition to the Neulasta shot feel less bone pain, so I gave it a try. I felt great that day, aside from my stomach feeling fluttery and not having much desire to eat.

Day 3
Sometime in the night, I started feeling very uncomfortable as I slept. My shoulders ached, my chest felt heavy, and it seemed hard to breathe. By the morning, I felt like my throat was swollen, and I was having a hard time swallowing. There was almost a clicking sound/feeling every time I tried to swallow. I felt pressure on my chest, like something was sitting on top of it, and making each breath difficult. Naturally, I was scared - I called my doctor, but as it was a weekend, it was awhile before they got back to me. Several hours passed, and I fell asleep. When I woke, I was feeling slightly better. The doctor decided it was not a typical side effect, and because I wasn't wheezing, they didn't think it was an allergic reaction. They told me if I started wheezing to go to the ER.

I felt better after that scare, and my major complaint was aching shoulders and a slight headache, and the same feeling, that I just didn't want to eat. Interestingly enough, as soon as I took my second dose of Claritin, the aching disappeared, I had more energy, and I felt much better.

Day 4
My main feeling was tiredness. I slept a lot later than usual (I never sleep in) and had pretty low energy. Still had very little interest in food.

Day 5
The same - I tried to wake up and get to work, but a wave of dizziness hit me, and I stayed home. This was the first day I didn't take the Zofran, and I was pleasantly surprised to find I was no longer nauseated. I started being able to eat a bit more, but I kept my diet very plain and simple - I just didn't crave anything else. I ate vanilla Greek yogurt, juice with a banana blended in, jello, applesauce, and something very small like a bean and cheese taco - for some reason that is the one normal food I HAVE been craving. :)

Day 6
I was able to go to work, but my walk from the parking lot was a struggle. I went up 1 flight of stairs and felt like my heart was going to pop out of my chest, I can't remember ever struggling so hard! Very short walks were likewise a struggle. By lunchtime I was wiped out so I went home, and actually felt so dizzy on the way home I wondered if I should be driving.

Day 7
A replay of the day before, again I was wiped out by noon, and had very little energy for short walks and stairs. But this was the first day I started craving normal foods - to celebrate, we ordered a pizza. I struggled to get down 2-3 slices - which is very weird for this pizza-lover!

Day 8
I dressed for work and was hit with another wave of dizziness and nausea, so I had to stay home. I spent most of the day sleeping, off and on. I had a bit more energy and appetite. I cooked our first real dinner that night, and ate well.

Day 9
Today is the first, most "normal" day I have had so far. I slept well, was hungry for breakfast, hungry for lunch, and for the first time craved coffee (which I normally love).

Updated to add:
Days 10-13
Feeling pretty close to normal - normal energy, able to multi-task. Main thing that has stuck around is the noisy stomach and acid reflux anytime I eat anything with tomato, drink coffee, or have anything spicy.

Day 14
Today, the day before my second treatment, was when my hair loss began. I'd been losing little bits here and there, which seemed normal but this morning, every time I ran my hands through my hair, hair came out. Every time. I'll let it stick around for a few days, and maybe get it buzzed this weekend.

Weird Things I Have Noticed While on Chemo

  1. Sudden exhaustion - One minute I'll feel fine - the next, completely winded and exhausted.
  2. Slow walking - I feel like I walk like an 80 year old. 
  3. Hard to focus - Particularly the first few days after chemo, it was hard to multi-task. I could only keep track of 1-2 things at a time.
  4. Not wanting to eat - It's hard to describe - sometimes my stomach will be growling, but I don't want to eat, or even think about eating.
  5.  I stink! Literally! There is a strange, unusually nasty smell coming from my armpit (but only the normal arm, where I didn't have lymph nodes removed.) I know, TMI, but I felt so freaked out, I'd like other people not to be taken by surprise.
  6.  Acid reflux, noisy stomach, and very frequent trips to the bathroom. I have to sleep propped up, or I'll get a burning in my throat. Some days, especially right after chemo, I felt like I lived in the bathroom. :)
  7. Dark under-eye circles - I noticed these right after my first treatment, because I have never had dark circles before.
  8. Hot flashes - Yup, I'm getting them.

I didn't want this list to be totally negative, so I thought of a few things that I see as "good things" that have come from being on chemo.

Things I Have Enjoyed While on Chemo

  1. I appreciate little things much more - when I do feel good, I feel so happy about it that I can enjoy it more.
  2. Reading - I've been reading through the Little House series of books. It's not difficult, and strangely comforting.
  3. Not being online - I go online as little as possible when I'm feeling poorly, and it helps me stay calm and focused.
  4. Not stressing about things that don't matter - when my energy is at a minimum, I put aside the things that are not deal-breakers, and don't let myself worry about them.
  5. Prayer and quiet time - When I'm feeling most worried, I pray. I also find moments to sit and just "be" without having any plan or goal.
  6. Walking slowly, you see more - Slowing down has made me more aware of what's going on around me.
  7. No energy for anger - I can't muster up the energy to be super-angry, so I'm not. :)
Well, that's the breakdown of how I am feeling so far after my first chemo treatment. To anyone going through chemo who is reading this, I hope it won't be a source of fear or discouragement, but maybe it will help you feel less alone if you are feeling the same things. Everyone is different, and not everyone will react the same way, so don't let this scare you! Another thing I have noticed is I have no energy for stitching and crafting on my weak days, so I just try to make up for it on days I feel well.

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