Hot town, summer in the city

Today I completed radiation #15. 10 more to go. Woohoo!

My skin has started burning a bit more, and I have some very unattractive little red bumps. I also have started to notice that my scar near my armpit is stinging. So that’s not fun. But all in all, still not too bad.

Whenever I get a bit frustrated, I remind myself what chemo felt like, and I think, At least I’m not sitting on the toilet with my head resting on the sink while my body shakes and my nose bleeds and my bones throb. And then I immediately feel better again and able to deal with whatever minor discomfort (in comparison) I’m faced with at present time. So thanks, chemo, for giving me a super unpleasant and unique perspective on what it truly means to feel ill.

Today I was a bit of a grumpypants. The weather where I live has been unbearably hot, which is not ideal when you’re receiving daily burns to your skin and have to travel every day by crowded public transit without air conditioning, back and forth to the hospital. On my way to my treatment today, I sent the following texts to my sister:

Sooooo pissed right now on fucking streetcar fuckkkkkk!!!!
Sweat is pouring down my face and back and I’m going to be late cuz it’s just sitting in traffic.
I want to murder everyone!!!!! Everyoneeeeee!!!!!!

So, yes. You might say the daily grind of going to the hospital is getting to me a tad. I even started to feel a bit sorry for myself today during my treatment and almost cried while I lay on the table, I suppose from the combination of exhaustion and overheating. I thought about how I haven’t had a break from this cancer business in over nine months now and I could feel the anger starting to boil from deep within. But I realized that crying while having a tube in my mouth and a plug on my nose would likely make matters a lot worse, so I chose to stifle my emotions for the time being.

10 more to go. I think I can, I think I can, I think I can.

To give myself a bit of hope and something fun to do, I’ve started collecting several photos of ladies with short hair, in the hopes that eventually my hair will grow long enough to have some sort of actual style vs. the buzz cut look I’m forced to sport right now.

Every time I see a short-haired girl out on the streets, I stare at her and oooh and ahhh. I’ve become a tad obsessed. To the point that I now even feel that people with long hair are a bit boring. I’m not part of their club anymore. I’m part of a new club, full of fierce, bold women who’ve shorn their long tresses in an act of defiance against what society deems to be feminine and pretty. Or, who’ve lost all their hair to cancer and chemo and had no choice in the matter.

Whatever. Almost the same thing.

Here are some of the photos I’ve collected.


I never thought that I would have hair as short as any of these, but now that I am, I am strangely excited about it. I just want it to grow. At lightning speed. Is that too much to ask? I think not.

In conclusion, I want the heat to go away, radiation to end, and my hair to grow. Whaddya know, three wishes. Now all I need is a genie.

Come on, come on, and dance all night
Despite the heat, it’ll be alright

Brandi

On Friday, I went to the ophthalmologist to try to get some answers concerning the many unfortunate things happening in and all around my poor eyes. It was confirmed that I have “severely” dry eyes, and something called blepharitis, which is the reason for my styes, itchiness, redness, grossness, and general discomfort. I was given many various things to put in my eyes to try to help and a new bedtime eye care ritual that is somewhat unpleasant. The doctor said it could take several months/half a year for the styes to clear up. When I asked, But how long until the constant watering of my eyes goes away, he replied, That will be for the rest of your life.

Chemotherapy, the gift that just keeps giving.

I am doing what I can do to get the situation under control and praying that the entire mess is not going to be chronic and as ridiculously dire as he made it sound. That is completely unacceptable to me, since I currently can’t do much of anything because of my stinking eyes. So we’ll see what happens. (Get it? We’ll “see” what happens? Never pass up an opportunity to make a pun, even if you have cancer and have learned your eyes might be damaged forever.)

Anyway. I’m going to now change to the subject of wigs. When I first learned I would be losing my hair, I wanted to make sure I had a wig that I could use to cover up my bald head. The second after I shave my head, I am putting on a wig and never taking it off, I said. Before starting chemo, I went to a few professional wig shops in the city and tried on some very expensive options (many good wigs can cost well over $1000). It wasn’t as fun as I had wanted it to be. The whole thing felt very strange. All the salespeople seemed to talk to me in this hushed voice. They looked at me with sad eyes, like I might die at any moment. The whole ordeal made me uncomfortable, as did spending so much money on something I didn’t even like all that much. I left each store without purchasing anything, thinking maybe I’d go back eventually. I never did.

After I lost my hair, I was surprised how comfortable I felt going out with just a hat or a scarf. I mean, I have cancer. I’m writing about it. It’s not a secret. I no longer felt the need to hide under fake hair. I was bald throughout most of my chemo, and felt okay about it, which surprised me. I still am amazed I posted photos of myself so freely on the internet, for all to see. If you had asked me if I would do that four months ago, I would have told you you were crazy. But I guess the hair loss made me a bit more confident, in some strange way.

Lately, I’ve been feeling like I missed out a bit on the whole wig part of chemo. Because being bald is fine, but sometimes it’s nice to pretend, just for a little bit. To feel and look like someone who isn’t sick. The more that my appearance has deteriorated with the cumulative effects of chemo, the more I understand that. And the more I miss having hair.

And so, I ordered a wig. Now that I am done with chemo. Which is a bit backwards, but I like to do things my own way. I also broke another rule by ordering it on the internet from some random wig site. This is something “wig experts” at the fancy boutiques will say not to do, because you can’t really tell how it will fit your head, or match your face. However, I am pretty good at figuring stuff out and doing research. So I read through some reviews and looked at some photos and finally settled on a style and colour that I thought might work. It was a good price for the quality, and most will be reimbursed via insurance, so I decided if I don’t like it or wear it only once, it doesn’t really matter. It gave me something to do, and something to be excited about, and possibly something to make me feel a tiny bit better during a low point in my cancer adventure. So that was enough for me.

Yesterday, my wig arrived. The wig’s name is “Brandi” and she is pretty sassy. When I put it on, it reminded me of my old hair. I started brushing it and it has been so long since I have brushed my hair, that I nearly cried. But I was having too much fun playing with Brandi to cry. Too much fun looking in the mirror and remembering what I used to look like. What life used to look like. And what it could look like again.

Ladies and gents: introducing, Brandi.

I am wearing sunglasses to protect my eyes. Or maybe my alter-ego Brandi is just so wild that she wears her sunglasses at night.

 

throwback thursday

When you wake up one day
and big chunks of your hair are falling out
because you’ve had your first dose of chemotherapy
and your chest aches
and it is hard to move freely
because you’ve had your breasts removed
and you have ugly scars all over the place
and you know everything is about to get a lot worse
you can crawl into the corner and put a bag over your head and scream

or you can put on a really cheesy pop song
and dance really poorly
even though your plastic surgeon would probably not be too pleased

Sometimes, you just make a choice.

Looking in the mirror

Last week I think I hit a new low of sheer misery. The fatigue that comes with chemotherapy is truly cumulative, and with each new treatment, it is growing increasingly difficult to do any of the things I once enjoyed. Such as taking a walk. Or lifting my laptop. Or lifting my head. The tiniest things we all take for granted have become incomprehensible to me. Memories of the past. Of a life I once lived, where my body would do whatever I asked of it, with ease. I feel as though I have been thrust into old age almost overnight. My bones ache when I try to move them. My body cries out for rest after walking up a few stairs. I wake up at night with hot flashes, my cheeks burning, thanks to the menopausal effects of chemo. Creases are starting to form on the outer corners of my eyes. My stomach and face are bloated constantly from all the drugs, making me look like I am five months pregnant. I can’t follow a basic conversation without losing focus, or feeling like I need to shut my eyes. I am an old lady. At the ripe age of 28.

Chillin with my Goodnight Moon bunny in bed, where I spent all of last week. I am looking super cancer-y these days. Yikes.

It has been difficult for me to look in the mirror lately. I don’t like what I see. A bald, puffy face, with red patches all over my cheeks and glossy eyes. Is that really me? It is hard to feel healthy or strong, when the image reflected back at me is anything but. Lately I am starting to feel as though I will never get my old self back. I can’t imagine having life in my face again. Or having hair. It seems like appearance should be relatively low on the list of things to feel bad about, when you’re dealing with all the crap that comes with a cancer diagnosis. But it is proving to be one of the biggest challenges for me. Looks aren’t everything, but when you’re already feeling just about as low as a human can feel, it really does add insult to injury.

It is hard for me to look at pre-cancer photos of myself now. I feel very disconnected from the girl I see. She’s pretty, and healthy, and happy, and completely unaware of what is about to happen to her. It’s as though I am looking at someone else’s life, even though I know she is me. Did I really do all those things at one time? Did I really look like that? Did I really have hair? I want to go back into those photos, just for one minute, just to remember what it’s like, to be happy and pretty. To soak up those moments. Because they are starting to slip away from me.


I hope that eventually I can start feeling better about what I see in the mirror. View my reflection as an image of a brave warrior, rather than one of a sick cancer patient whose body has been continuously cut, poked, and poisoned. I don’t want to be that girl who cries when she looks in the mirror. I have never been that girl. I refuse to let her win. And anyone who knows me knows I always get my way.

Looking forward

RIP eyelashes, you are sorely missed.
RIP eyelashes, you are sorely missed.

I looked at the results earlier this week from my routine blood draw, and for the first time, it showed a red flag instead of a check mark. The change alarmed me, as I stared at the ominous graphic of a down-facing arrow, signifying a drop of some sort. The description stated that I am anemic. As someone who has never failed a test, I was disheartened to see I had failed this one, after having a perfect score thus far throughout my chemo treatments. It was also an odd feeling, realizing that I am not in control of what is happening to my body right now. And things are most definitely happening. I suppose this should be reassuring, but there’s also something upsetting about it. I found the staff oncologist and asked her if the drop in my levels was anything to be concerned over. She explained that my numbers were still fine, and to be expected, for someone undergoing chemotherapy. The regular range only applies to regular people.

I am growing tired of the whole chemo routine and having all these bizarre things happen to my body.  I have about half an eyebrow on both sides and a significant portion of my once lusciously long eyelashes have fallen out. I was reading today that for many women, it takes a very long time for their lashes to come back, and often when they do, they are not as long as they once were. Something so silly, yet it made me feel quite sad. I have a few “things” and my lashes are (were) one of them. I often get compliments on them or people asking me if they’re real (they are….were). It can be rough to think of some of the long-term side effects from the chemotherapy, or the ones that will linger for some time. It is also somewhat of a heavy feeling, to think of the treatments and long road I still have to walk after chemo is complete. Despite what future post-chemo blood results might show, I know I will never quite be a “regular” person again. But let’s be honest, I never really was.

So in order to not get completely depressed, I’ve decided to make a list of some of the things I am looking forward to after chemo is over. Because there are things, and I need to remember them, especially when all that is going through my head right now is the fact that in a few days, I will once again be in a massive amount of pain and threatening to jump out windows.

Here is what I am looking forward to:

Eating sushi… the real kind
Not being afraid that every person who coughs or sneezes is going to kill me
Grocery shopping without passing out in the cereal aisle
Spring and the end of a miserable winter
Going for long walks
Not feeling like I am walking on hot coals
Hair regrowth, hopefully in the right places
Not having people stare at me with a does she have cancer or is she just some artsy girl wearing a scarf on her head look
Eating a real caesar salad
Having my skin return to normal and losing the not-so-sexy red patches that have taken up residence on my cheeks
Gaining my energy back (this one can take months, or years, but even a small increase will be something to celebrate)
Writing bitchy comments on people’s facebook statuses such as “I just endured four grueling months of chemo, but I do really sympathize with your seasonal cold that lasted three days.” (I will never actually have the nerve to do that, but I think about it all. the. time.)
Not having a perma-runny nose
Tastebuds that work properly
Not basing my entire life around my chemo schedule
Planning the most needed vacation ever in the history of vacations, even though I still can’t take one for some time
Being able to say I’m 28 years old and survived chemotherapy. And I’m still standing.

Huffington, hairs, and hearts, oh my

Thanks for all the love from my last post. Sometimes before I click the “publish” button, I start to doubt myself and worry that I might come off sounding a bit too angry or a bit too sarcastic that day. And then, ultimately, a voice that says who gives a s— gets in my head, and I click the button and hope for the best. Turns out people tend to react quite positively when I am at my most blunt and honest. So I thank you for that, and consequently, I will try to not doubt myself in those moments where I am feeling particularly truthful.

Here is a summary of my past week, for those who are interested in that kind of thing.

  • Hung out with some nice lady friends where we talked non-cancer things and ate delicious pizza, the remainder of which I ate the next morning for breakfast (Judge me at your own risk.)
  • Blasted songs from The Lion King with my sister and then danced around to some P!nk song. Both bizarre choices, yet very therapeutic nonetheless
  • Had a nice visit with a friend from out of town and discovered we both have the same belief that cats are evil and trying to kill us
  • Watched Silver Linings Playbook. Two thumbs up
  • Got completely sucked into the American Idol auditions and all of the I’m an orphan with three children and I have cancer and lost my leg and my dog is blind and I’m deaf but I’m still singing anyway type of stories. I love it. I can’t help it
  • Started losing my eyebrow hairs and some lashes, although most are being stubborn and hanging in there for now, so I give them an A for effort
  • Realized showering when you’re bald is much easier than showering when you’re not bald. So that’s something
  • Got some back/spinal bone pain which is an unfortunate side effect of an injection I receive to give my white blood cells a boost. Nothing ventured, nothing gained
  • Had another heart echo test where I got to hear my heart beat very loudly, which I think had a pretty solid horror movie beat to it, if anyone needs me for any sound effects in the future
  • Was invited to publish my blogs on the Huffington Post, the first of which appeared a couple days ago, enabling thousands more people to suggest magical cures for my cancer
  • Had two doctor’s appointments which I had hoped would be helpful, but left me feeling more frustrated and stressed than I had been in a while
  • Got home after appointment #2 and sobbed and had a pity party of one and maybe punched a thing or two (No humans were harmed.)
  • Received this handmade card from a very kind person who doesn’t even know me. Turns out it was just the reminder I needed:

My new look

I never in my life thought I would type the following sentence and have it be true: Last night I shaved my head.

On Thursday, my hair started to shed. Slow at first, and then faster. I couldn’t resist pulling at it. Maybe I’m making it all up, and it’s not actually coming out. And then I would pull ever so lightly at a clump of hair, and it would easily slide off right into my hands, proving that yes, indeed, it was coming out, and fast. Yesterday after pulling out a decent chunk, I decided it was enough. Time to pull a Fantine and cut it all off. It was tempting to try to keep it as long as possible, especially since I have (had) so much hair. But I needed to get rid of it. To take control. To stop thinking about my hair falling out and start thinking about something else.

My little sister starting cutting and my husband commenced buzzing. I watched the entire thing in the mirror, which in retrospect, may have not been the best idea. Everything started off fine. I’m shaving my head, no big deal, people do this. We put on some upbeat music and made some jokes and laughed a bit. But then, as we got closer and I started to see the actual skin on my head, I lost it and entered full mental case meltdown territory. I don’t look like me. My hair is all over the floor. I am 28 years old. I have cancer. There is nothing OK about this situation.

After a brief but necessary pause and some major “you are not your hair” pep talk from my sister and a few deep breaths, we got on with it and powered through. No more tears. Just one more thing that needed to get done, so I got it done. A big check mark on the to-do list.

Don't mess with me bitches, I'm craaaaazy
Don’t mess with me bitches, I’m craaaaazy

Everyone said the hair loss would be rough, and they were right. Actually harder than I had thought. I am a pretty confident person and it is not really a vanity issue, although I would be lying if I said I don’t miss my long, beautiful hair. But that’s not the hardest part. What’s difficult is looking in the mirror or catching my reflection, and being reminded that I am sick. That this is real. Before, I could try my best to ignore it. But now, it’s out there for all the world to see. For me to see. No escaping or denying it. This is happening.

So what is there to do, but wait for the tiny pieces that are left to fall to the ground, and move on to the next challenge, after dealing with this one in my own way, on my own terms.

My sister said I look tough and like someone she would never want to mess with. Normally I would never be able to intimidate a soul, so the idea that I maybe could, is kind of cool. My small silver lining for the day.

And here I am today. No wig or scarf. Just me… minus a few hairs.