Friday, August 29, 2014

My Eighth Chemo Costume: Pretty in Steampunk

Wow! I can't believe I'm two-thirds done with chemo treatments. Hallelujah!

This treatment's costume theme: Steampunk! (Because I'll never tire of steampunk.)


My blood counts were, well not exactly "normal" per se, but decent enough to continue with chemo #8.

Despite taking anti-anxiety/anti-nausea meds prior to arriving at the infusion center, I still experienced anticipatory nausea and vomiting. Yup, it's a real thing that 29% and 11% of chemo patients experience, respectively. (I feel so lucky!) I'm glad I skipped breakfast, otherwise that blue, plastic barf bag would have been more full.


My nurse used a slightly different strategy when accessing my port this time. Whenever the nurses access my port they have to flush it out with saline. For a while I wondered if that incited—or at least exacerbated—my nausea. My nurse explained that some patients have a reaction to the saline when it comes in prepackaged syringes, which is what they had been using for me. This time she filled an empty syringe with saline from a bulk container and it made a difference. Less nausea this time!


While my two anti-nausea pre-meds were getting infused, I mustered up enough energy to take some photos.


I have to give a shoutout to my friend Stephanie F., who sent me the adorable beige skirt that served as the inspiration for my creation. The original skirt was too small. Of course, that didn't stop me from finding a way to fix it. 

One straight cut down the back, sew on a few extra inches of fabric, cover with a beautiful bustle. Easy peasy.




I made the mini top hat from cereal box cardboard, fabric, and ribbons. It's so cute! I love it!



Oops! Slipped! You know what they say when you fall...


Stand up and continue to be fabulous!!!

I also have to give a shoutout to my friend Christine F. who made the one-of-a-kind necklace I'm wearing. 
You can find more of Chris's creations through Punkenstein Jewelry (awesome name!)


After pictures, it was time for chemo. I sat back and meditated while the chemo worked its…well, I wouldn't call it "magic," but it's working. Only four more treatments to go!


Steam On!


How to make bustles:

Child's skirt with bustle (The inspiration for altering my skirt)
Neo Victorian Easy Bustle Tutorial
The Incredibly Easy Bustle Skirt

How to make a mini top hat:
Mini Top Hat Tutorial (My hat is a modified version of this pattern.)

Sunday, August 24, 2014

My Side Effects: Scents and Sensitivity

Many-a-month ago, I used to love certain scents. Chemo sometimes gives me a heightened sense of smell. Unfortunately, this doesn't make me a superhero. 

Source

The sensitivity is hit or miss, but it always has the same result.

Cinnamon raisin bagels?

Source

Blech.

Source

Fruuiity soaps?

Source: Waking Ned Devine

Gag.

Source


Story time!

Thanks to weakness and fatigue, lifting a regular old jug of laundry detergent proved as challenging as weightlifting. Laundry day was a full gym workout.

Sources: Baby, Detergent

To conserve energy, I switched to those tiny individual pod things. My favorite lavender scent (which I tolerated quite well) was not available in pod form, so I settled for something called "moonlight breeze."

Source

Ugh! More like Bog of Eternal Stench! (In a too sweet, rotten berry kind of way.) 

Source
Source

Wearing clothes and sleeping in sheets reeking of this horribleness became a daily battle between breathing and retching.

Source

Three loads of laundry later, I returned to lavender, this time in a self-dispensing container that I don't have to lift every time I use it. Yay!

Source

I also re-washed all of my clothes and bedding to remove the foul "moonlight" miasma.


My Soltions

There is no way to predict what will and will not offend one's nostrils.

The best advice I have is that as soon as you realize something is afoul, get rid of it. (Goodbye cinnamon raisin bagels. Goodbye fruity soaps.  I miss you.) 

Also, if something already works, stick with it. (I love you, lavender laundry detergent!)

Oh, and one day a smell might offend you and another day it might not. A few hours after my second chemo treatment a friend and I painted our fingernails (big mistake). Since then I've painted my nails a couple of times without any trouble, provided I paint on a "good" day and not right after chemo.


Further Reading
Wikipedia: Hyperosmia (heightened sense of smell)
ChemoCare: Nausea, Vomiting & Chemotherapy


Disclaimer
Every person is different and their experiences will differ from mine. Always discuss your particular symptoms and concerns with your doctor.

Monday, August 18, 2014

My Side Effects: Mouth Burning

Imagine eating spicy food and having that lingering burn tingle the inside of your mouth. Now imagine that instead of dissipating after a few minutes, that spicy sensation burns for three days. Imagine this sizzle not only coating the lining of your mouth, but injected deep in your jaw. 

Source

If that imagery doesn't work, imagine using bleach as a mouthwash (also injected in your jaw). Yeouch! 

The gastrointestinal tract, including the mouth, is full of fast-growing cells. Chemotherapy drugs affect fast-growing cells in one's body. This is what leads to mouth pain, mouth sores, and other problems. 

Although I was warned about "mouth pain," this was an incredibly vague description at best and did nothing to prepare me for what I more accurately describe as mouth burning.

Source

I consider myself lucky in that so far I only had to cope with this side effect during my first two treatments. (I am also glad I have not had any mouth sores yet.)

I have chemo every other Thursday, which is considered Day 1. The burning usually started on Saturday afternoon or evening (Day 3) and would hit its peak on Sunday and Monday. 

Swallowing food never posed a problem. My esophagus felt just dandy. It was the first few bites that were the worst. Each nibble was like biting into shards of glass marinated in Tobasco sauce and lit on fire. Didn't matter what I ate: soup, bread, yogurt, water, ice cream, chocolate milk. I have tasted a fiery banana and it was. not. good.

Source

The experience was both excruciating and frustrating. Just when my appetite returned, everything turned to fireworks in my mouth and jaw. There were tears. There were four-letter words. Lots of four-letter words. Thankfully, the pain faded and by Wednesday (Day 7) my mouth mostly felt normal.

One aspect that helped me endure this pain during my second chemo was knowing it would be temporary. 

From my third treatment onward, the mouth burning has subsided. My lips feel tingly-numb for a few days starting on Saturday. The tingle feels more weird than painful, as if I've blown a raspberry or imitated a helicopter. Oddly, my feet will simultaneously feel tingly-numb. And I get a slight earache. Occasionally I sense slight mouth burning and pain in my jaw, which is nothing compared to the first two treatments. That was torture deep fried in Mount St. Helens.

Source


My Solutions 

I tried several strategies to overcoming this side effect and I can't say I came up with anything definitive.

At first I ate slowly. Ugh! Agony!

When I realized the first two bites of a meal were the worst, my technique became push through those first bites, let the teardrops fall, and eat as fast as possible. Subsequent bites yielded less discomfort except for feeling very full very fast. A break of longer than twenty seconds meant restarting the whole process.

Source

Milk kind of helped ease my pain. I still use this technique. Plus, I love milk. Especially when it's chocolatey. Mmmm.

My cancer center's pharmacy concocts a special prescription-only lidocaine mouthwash. I tried it a couple of times. Never worked for me. And the consistency was horrible. I have yet to refill my prescription.

I tried brushing my teeth before a meal. Actually, brushing my teeth felt soothing in general. (Yes, I know toothbrushes are technically another chemo no-no. I really hate soft bristle toothbrushes. And those mini sponges on a stick? No thank you.)

Source

I also tried avoiding brushing my teeth, you know to, uh, avoid further damage to the cells lining my mouth? Anything that might work, right? 

Of course, oral hygiene is important, so rather than go without polishing my pearly whites, I switched to using Biotène toothpaste, which is formulated to help people with dry mouth.

Source

I can't say this for 100% certain (I'm not a doctor, after all), but once I started taking my prescription of Omeprazole daily to ease acid reflux (another fun chemo side effect!), the mouth pain also went away. Coincidence? Perhaps.

I don't care exactly how or why the mouth burning sensation diminished. All I can say is I am grateful it has. And if it returns, I'll be ready for it.

Source


Further Reading


Disclaimer
Every person is different and their experiences will differ from mine. Always discuss your particular symptoms and concerns with your doctor.

Saturday, August 16, 2014

My Side Effects: Menstrual Changes

I decided to write about my crazy menstrual cycle because 1) it's the most recent side effect I've endured, and 2) because of its relationship to my two previous posts about fatigue and the blood transfusion I received during my seventh chemo treatment.

I am not going to censor this post. The only images provided will be created through words alone. You have been warned.


✿ ❀ ✿ ❀ ✿ ❀ 


After my first chemo treatment in early May I went nearly two months without a period. Fine by me. Chemo suppresses blood cell production, so I was kind of hoping/expecting to skip out on my monthly cycle for a few months. Alas, twas not to be.

My period in mid-June was fairly normal. All right. Normal I can handle.

One month later, come mid-July: Menstrual Cycle from Hell!

From the day of my fifth chemo treatment up until just prior to my seventh, I bled for 28 days: two weeks of light to moderate spotting, then for one week the flood gates of the Nile opened and there was no stopping the flow, followed by another week of moderate spotting. No wonder I was so fatigued during the days following chemo #6.

On my heaviest day I went through a dozen super absorbent tampons. That's more than an entire week's worth of menstrual blood for a normal person! And yes, I know that tampons are technically a no-no during chemo because of the increased risk of infection. Meh. Pads didn't necessarily help my situation. I bled through an entire pack of 32 super absorbent pads in the following four days. Oh yeah, and washed several loads of laundry. I had to place a towel under me every time I sat on a chair or sofa just in case I bled through my pad and pants. I felt like my uterus was hemorrhaging, not to mention the gargantuan blood clots I was giving birth to (I'm talking way larger than a quarter in diameter, and many larger than a silver dollar).


My Solution

Tell my oncologist!!! I mean, seriously, what else is there to do? I probably should have called the cancer center and informed my doctor sooner. I already had an appointment scheduled a few days after my super-heavy day, so I waited it out.

Her eyes went wide as I told her about my lovely little period. By the time she and I met, I had been bleeding a total of 22 days.

Her solution: She prescribed me birth control to regulate my oh-so-crazy menses. Yay! Another drug to add to my collection! 

It didn't help that my pharmacy was out of stock and I had to wait five more days. Luckily, my period had started to calm itself down. By day 27 I started the pill and I am very glad I don't have daily laundry any more.

All of this unsurprisingly led to my needing a blood transfusion. Two units of lovely red blood cells. I swear it seems like my uterus bled more than that.

On the plus side, I feel über better now. 


Further Reading

CancerCare: Menopause and Chemotherapy
CancerCare: Vaginal Bleeding


Disclaimer
Every person is different and their experiences will differ from mine. Always discuss your particular symptoms and concerns with your doctor.

Friday, August 15, 2014

My Seventh Chemo Costume: Doctor Who

Who else is super stoked for the Doctor Who series eight premiere? I am!!

In honor of one of my favorite doctors, I dressed up in my gender flipped Fourth Doctor costume and my sister, Christine dressed up as the Tenth Doctor.


But first, a quick note about yesterday's chemo treatment.

Christine and I spent eight hours at the infusion center yesterday. Normally an infusion only takes three to three-and-a-half hours. So why the extra time? Sadly, a TARDIS was not involved.

My oncologist called me on Wednesday to tell me that my Tuesday lab work was a bit alarming. 


Normal hemoglobin range balances between 12.0-16.0 g/dL, and anything below 9.0 or 8.0 is worrisome. You know hemoglobin, that important molecule in red blood cells that transports oxygen from lungs to body. My tests results came back at 7.7 g/dL. Yowzah! A lot of my other counts were down, too, including my red blood cell count. These low results made sense. As I mentioned in my posts about fatigue and my insane menstrual cycle, the past two weeks following treatment #6 I struggled to get out of bed for several days, and the days I could get out of bed I felt extremely weak.


The solution: a red blood cell transfusion.

Christine and I arrived at the infusion center on Thursday at 8:00 a.m. and by 8:30 a.m. precious blood cells began transfusing into my veins. It kind of weirded me out and unfortunately the anti-nausea/anti-anxiety med I took prior to my visit did not prevent me from regurgitating the mini donut I had for breakfast. Hello mini donut!

Four hours and two units of blood later, the pre-med and chemo infusion process began. No delaying chemo this time, which is just as well because I look forward to when this whole cancer ordeal is over.

Transfusion Snoozin'

was extremely exhausted—mostly from having gotten very little and very poor quality sleep the night before—and slept the majority of the eight hours. However, I'm glad to report that the transfusion has worked wonders! I feel great compared to the aftermath of treatment #6. After chemo #6 I could barely move, barely stay awake, barely talk, barely eat. Chemo #7 has been a 150 degree improvement (the other 30 degrees are dedicated to some lingering nausea and tiredness). My appetite has increased and I stayed awake nearly all day Friday. Fantastic! 


There we are at the end of the day. We finally left the infusion center around 4:00 pm.

That is a 20½ foot-long Season 16/17/Shada Scarf replica, by the way (21 feet even with tassels). I crocheted it back in September/October for my 2013 Halloween costume.

Well, that's all.

Must Dash!


Doctor Who Scarf Patterns: 
http://www.doctorwhoscarf.com

Thursday, August 14, 2014

My Side Effects: Fatigue

My readers may have noticed that I've haven't posted as frequently this past month and there's a reason for it.

Fatigue.

Gone are the days I could carry a backpack containing my laptop and several heavy textbooks all around like it was nothing.

Gone are the days I could carry an avarage-sized purse around.

Gone are the days I could live off four hours of sleep—multiple days in a row— and somehow still function each day.

Gone are the days I could... zzzzzz... Whoa. Sorry. Dozed off. What was I talking about?

I replaced my normal purse with a teensy purse and carry the absolute bare essentials inside it. It probably weighs less than a pound. Even so, I often ask my mom or sisters to carry my mini purse for me.

Some days it's a chore walking from my bedroom to the living room.

Carrying a gallon of milk from the fridge to the counter three feet away is taxing.

I'm too tired to research pictures to embellish this post.

One day, I woke up, took a ten-minute shower, and immediately went bad to bed for the first of several naps.

Don't get me started on doing the dishes. I replaced my ceramic plates and metal silverware with paper and plastic, respectively. Sorry environment. You'll have to wait until chemo is done.

My fatigue is worst the day of and the days immediately following a chemo infusion. It's sinking to the bottom of a pit and slowly climbing back to the top over the next two weeks, only to be knocked down again at the next chemo treatment. Kind of like if Sleeping Beauty and Sisyphus had a child together.

During chemo round #6, I slept an average of 60–70% of my days (that includes the days I slept up to 90%). Did not want to get out of bed. Nope. Not happening. Of course, there were other factors involved (such as a crazy menstrual cycle, which I have discussed in a different post).

And because side effect management often begets other side effects:

Sleeping so much during the day throws my sleep cycle off course and I can't fall asleep at night. Grrr! Arg!

Except when I'm really tired, nothing can keep me from snuggling under the comfort of my blankets and dozing away to a delightful dream-free land (because dreaming also takes too much energy these days).


My Solutions

I keep things as easy as possible for myself. I've taken a medical leave of absence from work, which creates other problems, but overall has been a blessing.

Some chemo articles recommend staying awake as much as possible during the day to avoid problems falling asleep at night. I just say whatever and sleep whenever my body wants. I also sleep wherever: bed, sofa, floor, resting my head on the kitchen table and huh, where did that hour go?

I reserve my minute stamina for the activities most important to me and say no to anything outside my energy zone. My family often invites me to various events and most of the time I have to say no. I wanted to go on that three-day family getaway to Santa Cruz, I really did. The vacation even coincided with my good days. Ultimately, I did not want to risk overexerting myself, and the option of staying in the hotel during my sleepy spells did not seem appealing. I prefer the comfort of my own home.

Speaking of good days—usually the three or four days prior to chemo—I always take full advantage of them. I do laundry, tidy my room, go grocery shopping. Whatever I need. I get out of the house when I feel up to it, although I stay as local as possible. I've also gone swimming in my backyard pool a couple times. I cherish the few precious good days.

On the worn out days, I ask people for help whether it be driving me to a store, keeping me company, or making me a sandwich. This burden mostly falls to my family. I could not get through any of this without their support!


Further Reading

CancerCare: Fatigue and Cancer Fatigue 
Cancer.gov: Fatigue 

Disclaimer
Every person is different and their experiences will differ from mine. Always discuss your particular symptoms and concerns with your doctor.

Wednesday, August 13, 2014

My Side Effects: An Introduction

All right, let's get to the nitty gritty. Chemo side effects. They're rough. They're tough. And you just have to get through them.

I'm only half-way through chemo and each cycle has surprised me with something new. (Here's to six more treatments' worth of surprises!)

I'm going to start a series of posts dedicated to the wonderful harrowing world of chemo side effects such as, but not limited to: fatigue, mouth pain, bone pain, nausea, and menstrual changes! Yay!

This series will only cover the side effects that I have personally experienced and how I cope with them. Every patient is different and their experiences will differ from mine. Remember to always discuss your symptoms and concerns with your doctor. I sure do.

Friday, August 1, 2014

My Sixth Chemo Costume: Happy Birthday, Harry Potter!

"I solemnly swear that I am up to no good."

Good news! Thursday marked my half-way point of chemo treatments. Six completed, six to go. Yay!

Thursday was also Harry Potter's birthday! Happy would-be 34th, Harry!

To commemorate one of my favorite book series and another one of my favorite characters, I present...


Hermione Granger!

Trivia: Hermione and I share the same birthday! (Hermione the character that is, not the actress. And I'm younger than the character would be.)


Uh-oh! Looks like Hermione is under the Calvoio curse. Better fix this.


Oh no! Now I look like a purple-haired Snape!

One more try.


Fun! I look like Tonks!

Still, there has to be a spell somewhere to remedy this.



Ah! Much better au naturel!

I got a bit crafty these past couple weeks and taught myself how to knit (which led to lots of R&R and less severe side effects). That scarf hanging on my chair—knitted it myself! Took several days to learn, several attempts and failures and restarts, a Harry Potter movie marathon, finishing the YA novel Allegiant on tape, several TV episodes, and other time spenders. When I finished I realizeded a scarf is way too hot to wear for summertime. Oh well. It makes for nice decor. (Pattern: garter stitch, cast on 25 stitches, knit 34 red, 4 yellow, 6 red, 4 yellow, repeat 10 times or until desired length, end with 34 red, add tassels.)


I also made the wand myself using printer paper, hot glue, and paint. Seriously! Here's the online tutorial I used: Homemade Wand Tutorial.


Oh yeah, and behind the scenes, after taking Hermione fun photos I immediately changed into pajamas because realistically I felt more like this (minus the slugs):


(Warning: Avoid watching if you get squeamish.)
video
Source: Harry Potter and the Chamber of Secrets

All in all,

Mischief Managed!