Sunday, June 29, 2014

My Hair is GONE! (Day-by-day pictures!)

Google "chemo hair loss process" or any variation thereof and it's surprising how little information you will actually find about losing one's hair. Plenty of articles mention, "You will start losing your hair within 2–3 weeks of your first treatment. DON'T WORRY! IT WILL GROW BACK!!!"
"Alopecia is a common side effect of chemotherapy. USE A COLD CAP TO PREVENT HAIR LOSS!"
Or, "Losing one's hair can be distressing. WEAR HATS AND SCARVES! HATS AND SCARVES!"

Yeah yeah yeah. That doesn't help me understand the balding process. What is it like to actually watch yourself go bald? How long will it take? Will it come out in clumps? Will I have big bald patches on my head? Will it hurt?

Asking "How long does it take to lose one's hair during chemotherapy?" is like asking "How many licks does it take to get to the Tootsie Roll center of a Tootsie Pop?"


The world may never know...

Which is why I decided to document my hair loss process. (Impatient monkeys have permission to skip to the end of this post for day-by-day photos.)

I read a few forums and nearly every person—let's be honest, they were mostly women—talked about how devastated they were to lose their hair so they just shaved it off. I've already discussed how shaving my hair again was too devastating for me.

The slow process is not for everyone. Each person has to deal with hair loss in their own way. I'm a peel-the-band-aid-off-slowly, inch-into-the-pool kind of person. Coupled with my curiosity, it's only natural I would take the slow route. 

So, to answer my own questions (while keeping in mind that every patient's hair loss experience will be different)...

  • What is it like to actually watch yourself go bald?
    • For me, fascinating, embarrassing, horrifying, and heartbreaking. The embarrassing aspect came into play when I was around other people, particularly strangers. I felt bad for anyone who had to look at me, so I wore hats anytime I ventured into the public eye. I nearly cried at my family's Memorial Day BBQ celebration (the first time I was in a group setting with super thin hair). Of course, I've laughed and made fun. I also invited people around me to laugh, be shocked, and sympathize. Basic tire swinging stuff.
  • How long will it take? 
    • The active phase of my hair loss lasted about one week, then stopped and left me in limbo. Originally, I thought the pause happened because my second treatment was delayed. I waited patiently hoping the process would begin again once I resumed chemo. Some hairs came out, but no more than a normal day during life pre-cancer. A week after my third treatment I came to the conclusion that the remaining hairs on my head must be resilient and that for better or worse they were gonna stay.
  • Will it come out in clumps? 
    • Yes, but not in the way I thought. See the videos below.
  • Will I have big bald patches on my head? 
    • Not in my experience. My hair just got thinner and thinner. Luckily, the remaining hairs are distributed evenly over my scalp.
  • Will it hurt? 
    • Nope! At least not physically. Thank goodness! Some articles mentioned that one's head might feel tingly a day or two before the hair fell out. I experienced mild tingliness when I touched my head, especially after I tied the hair up all day. I think the follicles wanted freedom. Pulling the hair out never hurt either.

Below are some videos showing what that was like:

UPDATE: If the videos don't work, click on the links provided.

Sunday, May 25, 2014 (Day 4)

Funny enough, for one who used to be a YouTube addict, I didn't think to search its database. People have posted videos of their hair loss, so I'm not the only one who has done this. I wish I'd thought to film my process, especially the huge clumps of hair that came out after I washed it each time. Instead, I took snapshots.

If hair does not gross you out, then enjoy this beautiful collection of pictures:

During the process I discovered something more horrendous than being bald again: The Perpetual Gollum Phase. Ugh! Somehow I missed the part in those hair loss articles discussing partial hair loss. Our society is so saturated with images of the bald chemo patient that we overlook the phases in-between and the possibility of not-so-bald.

I waited for those stubborn hairs to fall out. Oh, I waited and waited. I wanted to hold out until the last strand fell to the floor. After 37 days, I gave up and buzzed it all off. I was tired of having ridiculously thin hair. 

My sister asked if I wanted to film or photograph the buzz cut. No. I did not. This was not an act of courage. This was an act of defeat, of surrender. I needed it to be as private a moment as possible. That's not to say the moment wasn't special.

Since my two-year-old nephew has been unimpressed with my stringy hair, I thought it would help him to watch and even participate with the buzzing ceremony. I gathered my hair into a ponytail barely wider than a #2 pencil and hacked it off myself. My sister helped my nephew guide an electric razor over my head. He seemed to enjoy it. Until he got frustrated because we wouldn't let him do it all on his own, so he marched out of the bathroom. My sister continued shaving my head until her newborn got hungry. My brother-in-law—an expert at buzz cuts—took over and finished. He was very sweet and paid attention to details I never would have thought of. 

The entire time, all I wanted to do was cry.

I suppose shaving one's head is a rite of passage for chemo patients. I have finally joined the ranks.

I have to admit, I'm glad the hair is gone. My head feels a lot better. Although it's a curious phenomenon that when I shaved my head two years ago in the winter, hats felt uncomfortable (except when outside in the snow). So far, despite it being summertime, a beanie feels perfectly soothing sitting on my bald skin. I am officially Chemo Girl!

All right, finally, the moment you've all been waiting for. Below is an almost day-by-day photo collection of my hair loss process, with pictures taken from multiple angles. Once I reached the Gollum phase, I stopped taking pictures as frequently.


My 2-year-old Nephew Is Mad at Me

How do you explain cancer to a toddler? 

My nephew and I used to be best buds, watching movies together, playing hide and seek, fighting imaginary zombies, making playdough. Normal 2-year-old stuff.  

We can't do that anymore. Well, I can't. I can't run around the house and play chase. Sometimes I can barely sit and play Legos. And it's frustrating! For both of us. 

To any person who has been a parent while going through chemo, kudos to you! I am so grateful I don't have kids right now.

My family and I have tried to explain to my nephew that I'm sick, that a doctor is helping me, that I have "owies." I've shown him the scars from my surgeries. He tells me about his own owies and talks about getting better. 
"You get better too, Manda?"
"Yes, I'm getting better."
"Doctor gives you medicine? Make owies go away?"
"Yes, eventually."

On a certain level, he understands. However, it's the invisible owies that are difficult to explain, like why I'm tired all the time or if I have a body ache. Those symptoms are harder to explain because they can't be seen. (I really need to research a better way of explaining things to him. Homework for tonight!)

When my hair started falling out, that was terrifying for him. He avoided me for weeks and refused to play with me, even after we tried on hats and wigs together. This from a kid who last Halloween saw a guy in a scary clown mask and demanded the guy put it back on when he took it off. My Gollum hair was more upsetting to my nephew than a blood-splattered clown!

The sad part is, the above image is totally true.*

Some side effects are not mentioned in drug pamphlets. Some side effects affect family members. Some side effects include your nephew announcing "I don't like you" and "Go away!"

So my nephew is mad at me. I totally understand. I won't pressure him into liking me when he's upset because I'm too tired and sick and weak to play with him.

I'm mad too, kid. Trust me, I'm mad too.

*I feel like I should explain. My nephew likes watching scary shows. He loves Scooby-Doo and Ghostbusters and Monster's, Inc. He watches clips featuring the Wicked Witch and doesn't give a hoot about Dorothy and friends. He accidentally saw Slender Man on my iPhone and wanted to play the game. Pennywise he discovered on his own while browsing YouTube (he's a tech savvy toddler), and his mom put a stop to It (haha, pun). I have always introduced kid-friendly shows and respected his boundaries. If he says he wants to stop watching because he's bored or scared or whatever, I turn off the movie. Don't worry, he also likes Frozen and Nick Jr.

Wednesday, June 25, 2014

My Denial Phase

Of all the emotions I've experienced, denial has been the most fascinating by far.

I completely convinced myself that someone had made a mistake and that my last prediction of "Tiny will be nothing" would come true. Luckily, I reached a state of acceptance before receiving my official diagnosis.

Rather than reflecting on the strangeness that was Denial, I'll share some quotes from my journal during the days between my excisional biopsy on Friday and my ENT calling with the official diagnosis on Wednesday.

(Updated: For those who don't know, Christine is my youngest sister.)


Excerpts from my journal:

Saturday, April 26

I have lymphoma.
It’s weird to write. I don’t feel like I’ve fully comprehended it yet.
Weird weird weird.

Sunday, April 27

I’m definitely going through a denial phase. I keep thinking someone must have made a mistake. Is this really happening? I feel fine. This is ridiculous. OMG. It sounds like a story I made up for attention. OMG.
I don’t know if I can do this.

The part of me that’s in denial feels like this is some kind of sick joke.
At any minute someone is going to pull back the curtain and reveal a camera crew and say, “surprise!”
Of course, that’s not going to happen.
This denial phase is getting worse. I don’t like it. At the same time, I just have to get through it. Gah! How am I going to make it through this? All of this?

Monday, April 28

I’m seriously in denial. I’ve convinced myself that the doctor made a mistake. Really. He made a mistake. I’ll get a phone call tomorrow and he’ll say, “I’m sorry for the scare. It looked like lymphoma, but we were wrong. Tiny is benign. You just need some antibiotics to minimize those other swollen lymph nodes.”
It’s too unreal. Seriously. This is something from a story. The universe has chosen the wrong character. Really.
And I keep telling myself to wake up. I sat for over a minute telling myself to wake up. And I will wake up tomorrow in my bed and everything will reset to normal.

In tears, I called Christine. I was bawling and cringing. Christine asked if I wanted her to come over. I said yes and she came over. I think this was the worst cry yet. Christine and I sat on the sofa, and I leaned against her chest in a fetal position, and I bawled and cried out and I was a mess.

Mom thinks I’m in denial. I told her there is a difference between having a definite diagnosis and having an in-process diagnosis.
Now, if it is lymphoma, will I deny it and ask for a second opinion? No. I’m not that crazy. Maybe for the next day or two I just need to exercise my faith that my last prediction will come true. I will have to do a massive retraction via Facebook and email and whatever and simply say I have never been more grateful for a misdiagnosis in my life!

AM I CRAZY to believe that there is still a chance for a diagnosis other than cancer?
Is there anything I can do to have this condition taken from me?

Tuesday, April 29

I’m ready for a diagnosis. An official diagnosis. I’m tired of waiting. I want to know now.

OMG. I’m really ready for this. Yesterday and the night before, full-blown DENIAL!!! I won’t say I’m at acceptance. I am content with a cancer diagnosis. Weird.
Wow. I really am.
I hope I get a phone call tomorrow with a confirmation. All I can do is pray.