Thursday, August 23, 2018

Chemotherapy update #2

Here were my experiences after doing my second Chemotherapy treatment- this was the second of 4 doses of AC, every other week, after which I will do 12 weekly treatments of Taxol.

Day 1 - Chemo day
Everything went well again, I had no reactions, and I was out around 12 PM again. When I came in they did a blood test, and showed me how much my white blood cell numbers had improved after the Neulasta shot. Then they followed with the treatments. Only the last thing they gave me gives me any reaction (which I now know is Cytoxan) - a tingly headache, and weird feeling in my nose, like water going up my nose after a dive.

I was anxious to take my anti-nausea meds as soon as possible, so they told me I could take them by 1:30. I was so hungry! I kept having visions of huge meals, and every food sign we passed made my stomach growl. I knew it was probably the steroid and other meds, so I tried to eat lightly. So glad I did, because by 2 PM the super hunger changed to dull nausea, which hung around all day. I'm beginning to realize chemo days are going to be a bust for me - all I could do was lay around and feel miserable, unfortunately. The nasty feeling didn't subside until 10 PM, so I stayed awake awhile to enjoy feeling better, then went to bed. Took a Claritin to prepare for the Neulasta shot the next day.

Day 2
Felt great - just a bit dizzy. My stomach was turning flip-flops every time I was due to take the anti-nausea meds, so I took them on schedule. That afternoon I had the Neulasta shot - I immediately felt dizzy and out of it, but mostly ok. Ate pretty well that day, although slowly. Around 10 PM was when the aches and pains started.

Day 3
Looks like the day after Neulasta is going to be a bust, too. I was in so much pain, from the waist up, especially in my neck and shoulders and back. Feels like you've been punched all over - I kept expecting to see bruises, but it was just aching. Spent the entire day in pain, took a Claritin around 10 PM, and then the pain slowly dissipated.

Day 4
Still a bit achy and dizzy, but better. Had to take my anti nausea meds again, with my stomach doing somersaults. Was able to eat pretty well, spent most of the day resting, took a short walk in the evening.

Day 5
Woke up achy and dizzy, so I had to stay home. Felt better towards the evening, when I took a short walk and saw a movie.

Day 6
Back at work, but feeling pretty dizzy. Stomach a little fluttery, but got by without the anti nausea meds. Didn't take the Claritin to see if that's what's making me dizzy. Ate well.

Day 7
Back at work - not dizzy, and much more alert. I'm thinking it's definitely the Claritin which has made me so spacey. Ate well, but acid reflux is keeping me from enjoying coffee - feels like I'm swallowing a lit match. Boo.

Day 8
Had a tough time sleeping, after waking up at 2:30 AM with a sore throat and acid reflux. Didn't have much appetite, felt nauseated, was only able to do a half day at work.

Days 9-14
The main thing that bugged me was acid reflux - can't tolerate anything with tomatoes, or even a little bit of pepper. A real bummer because I love spicy food and pizza, both of which are too hard on me now. Hair loss is still happening, but patchy. I have a funny cap of shaved hair going strong on the top of my head - which is great because with that natural velcro top, I don't need a wig grip. :)

Friday, August 17, 2018

Chemotherapy update - Wigs!

Here's another post I hope will be helpful if you or someone you know is losing their hair. I knew nothing about wigs and hair loss before this, so here is what I've learned so far!

I did a lot of online research about the hair loss process, so I would know what to expect. It really helped me to have a plan - I did my wig shopping in advance, knowing that when I was on chemo, I wouldn't have the energy or emotional stability to get through it.

Haircut and Hair Buzz
First, I cut my hair into a cute, short bob - I knew my hair would fall out, but there would be less of it to fall out. 2 weeks after my first treatment, it started falling out in handfuls, so I took the plunge and got it shaved off. I had no idea what to ask for, so, I asked for the shortest setting on the clippers, which is a 1. I didn't want to look like Mr. Clean just yet. :)

   

It is hard to look into the mirror and see a shaved head, but I was a lot less emotional than I thought I would be. I won't be winning any beauty awards, but it looked a lot less terrible than I thought it would. I kind of felt like Ripley in glasses. And my head was a lot less lumpy and awkward than I had imagined. Ugh, but all those spiky little hairs as they fall out and poke me in the head are a real pain!

Wig Shopping
My goal was to have at least 1 moderately priced, good-quality wig, and a bunch of other cheap fun wigs for running to the store, going out, etc.

After a lot of research on Youtube, I settled on a cute side parted bob by Estetica called Jamison:
Jamison by Estetica

Jamison retails around $216, but many online stores have good sales that could put it in the $150 range. After wearing this wig for several days, I do think it is a nice quality wig that looks very realistic. It is very light and pretty comfortable, even for people with large heads like myself. The permatease in the scalp is pretty scratchy, but the bonus is you get more body in your hair if you want it. You can also manipulate the part a bit and the mesh / lace makes the scalp area look very real. Everyone who has seen this wig says it looks like real hair. I had some quality issues with the wig I received and had to exchange it, you can read more about that farther down.

Color Issues
Color is a challenge - because all you have is this one small photo of someone with a hair color not even remotely like yours. Being Hispanic, there is a real lack of models who look like me, so I really have to use my imagination and go out on a limb when ordering.

The first color I ordered, R4-6, looked like my hair color in the tiny thumbnail:
 
But when I received the wig and tried it on it just wasn't right - it was way too brown, and kind of a golden brown, that doesn't really show in the thumbnail. Again, I think this reveals a limitation for Hispanic, and Asian wig shoppers - there aren't a lot of colors with the right tone for us.

On my second try, I ordered R2-4, and that was a better match, but still a lot more brown than it appeared in the thumbnail:

But seriously guys, look at those tiny thumbnails - do they not look the same to you?

My best advice is to go into an actual wig store and try on to find the right shade. But in my experience the saleslady refused to give out style numbers and colors, assuming I would order it online. That was really off putting because I would happily order in person, and pay more if I had a good experience with her.

Ordering Wigs Online- Exchanges, Ugh
Exchange policies - do your research! The Jamison wig arrived with damage I could not see, but since it was shipped directly from the wig manufacturer Estetica, I have no way to prove it was damaged by them and not me. When I sent it back to the store they saw the damage and assumed I was responsible. I have been going back and forth with the store for 3 weeks - they are charging me for 2 wigs, even though I only have one. The customer service people have been very unsympathetic, even though I told them I was a first time wig buyer and a cancer patient on chemo with a limited budget.

So my advice is do your research on the store return policies and ask as many questions as possible upfront. I think I could have saved myself a lot of time and money that way. Based on my experience I would not recommend the store I purchased from, I don't even want to name them, but I'll let you know when I have a better experience.

Inexpensive Wigs
I found a great local wig shop with really affordable prices and the best part was that all the wigs were in the middle of the store and I could just put on a wig cap and try on every single one! I highly recommend visiting a local wig store like this because you really can't tell from a photo if a wig will look good on you or not. It's a great way to find which styles work for you.

My favorite inexpensive wigs so far are Bobbi Boss wigs:

Bobbi Boss Jesse wig - Color 4

Bobbi Boss has full price wigs in the $50-$60 range, but you can usually find them on sale for $25 and less. Their color options are a much better match for me, they do have lighter colors but their strength is dark colors.

I had a great experience ordering from Ebonyline.com. They had a good sale going, and with their $4.99 Flat rate shipping, I ordered my wigs on a Sunday night and had them by Thursday. They also had the lowest prices compared to other stores I saw.

So that's my experience with wigs so far. Do you have any good wig recommendations? Please leave a comment and let me know, or ask me any questions you might have!

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.