Tis the Season... for Thank Yous!

I want to thank all who donated to my Light the Night team, the Walkin' Wendys. Thanks to your generosity, we raised over $2300! And many thanks goes to my team who hoofed it all around Walnut Creek and helped spread the word about LLS and all they do for cancer patients, survivors and caretakers.

Some of the highlights from the walk was the cheering on from the LLS volunteers!

Light the Night 2014

It's time to Light the Night again!

This year my team and I are walking to raise funds and awareness for blood cancers. The Leukemia and Lymphoma Society has been a great resource during my cancer treatment and ever since I've been (literally) back on my feet, and they've continued to be a great source of support. 

I was amazed at the turn out last year, and felt so inspired seeing so many survivors, fighters and caregivers all rallying together. Here's some pictures from last year!

Click here to find out more information about LLS's Light the Night, for events near you and how you can donate/volunteer/participate. Check out my team website below if you want to donate to my team, the Walkin' Wendys, or you can even join us on October 25th if you like!

http://pages.lightthenight.org/gba/EastBay14/WMuller

Follow Me On Facebook

I started a Facebook page!

Hopefully this page will help connect more of us cancer patients and survivors, and anyone else who's interested in crappy drawings about bone marrow transplants.

Also, here's something interesting: If I went back in time twenty years and tried to explain "following someone on Facebook" to my 8-year-old self, her 1990s mind would probably imagine the following:

So, follow me on Facebook and let's see what happens!

Passengers

I'm back! 

No, I'm not dead. I've been balancing my human life with my post-cancer body, and that has left little time in between to really sit down blog. (Is "blogging" the same as "complaining"? I think so...) 

Anyway, now that work and life has slowed I bit I'm able to assess how things are going. I met a fellow BMT survivor recently and we discussed our lasting symptoms from treatment, and how you can be rid of cancer, but cancer will never be rid of you. It is a stain that cannot be washed away. 

She then described cancer with a car and driver metaphor. I loved it, took it and put my spin on it.

The moment you're diagnosed with cancer, the disease carjacks you, bloodies you up and throws you in the trunk. So begins the joyride you enjoy from the cramped, dark space next to the spare tire. 

Then you start treatment.

You break yourself out of the trunk, take the driver's seat, and shove cancer into the passenger seat. For a while you both sit side by side, sometimes the cancer grabs the wheel and steers you into on coming traffic, because let's face it cancer is a sociopath. It's constant nagging and side-seat driving nearly drive you insane (pun intended). 

Finally, you're in remission.

Cancer gets shoved into the backseat. It kicks your seat and continues to backseat drive, but your focus is on the road.

Eventually cancer slinks into the trunk where it will stay with the rest of your emotional (and literal) baggage. Maybe you get a trailer hitch and stow it in that, but in the end it will always be a passenger.

Along the way down this highway, you pick up some hitchhikers. Side-effects of the chemo, emotional and physical trauma. Passengers that, like your cancer, refuse to take a hint and get the hell out of the car. And they will not shut up.

These are some of my most persistent passengers.

They are constant companions in my post-cancer life. Now that I have rejoined the human world and have new passengers: a job, bills and, dare I say, responsibilities, I feel like I'm driving in a clown car of annoyances.

My passengers constantly compete for my attention. Work will scream for its bottle, while Dry Eye begins poking my eyes. Sleep tugs on one leg while Night Cramps tug on the other. Hunger scrapes my insides while Pill Nausea punches me in the gut. Migraine jackhammers into my skull while I chase Student Loan around the house for stealing my wallet. 

How do I manage it all? I'm not sure I do. "Coping" is a better word. "Manage" implies some kind of organization. My approach is to drop one thing to deal with the other. The one that nags and stabs and shrieks the loudest wins - those invariably are my cancer passengers.

I used to get mad that so many of these passengers still dominate so much of my life. I'm over two years out of transplant. Why couldn't I just suck it up and get better already? But then, after a long conversation with other BMTers, I realized that, I am ONLY two years away from transplant. I practically died and came back to life two years ago. Compared to a two-year-old zombie, I think I'm doing pretty good.

At least I'm not a torso on a lawn.

Damn My Eyes!

I haven't posted in a while. I have been getting acquainted with my new GVHD friend: Chronic Dry Eye.

I'm fairly certain that my body thinks I'm a dead Egyptian pharaoh. With my dry mouth, dry eyes (and other possible dryness), I'm all the more closer to becoming a dry, shriveled up mummy. 

Dry eye, as the name suggests, is a condition where your lacrimal glands (ie: tear ducts, think of any Goth song that involves the word "lacrimosa") no longer function properly, producing little or no moisture for the eyes. It occurs in 60-90% of BMT recipients, so unfortunately this does not make me special. It just makes me 60-90% miserable. It's like the Dust Bowl, but for your eyes!

As a result, my eyes experience all kinds of dryness throughout the day.

There's the Desert Eye, dry and desolate, pretty self-explanatory:

And the Sandy Eye, similar to the Desert Eye, but with more gritty, grainy feeling, like someone's kicked sand in my eyes: 

Then there's the Glass Eye, my personal favorite, when it feels like I have ground-up shards of glass in my eye:

And of course the Lazy Eye, where my eyelids start to stick to my eyeball and blinking takes more effort than normal:

And what I like to call the Eye of Sauron, in which my eyes are wheels of fire (unfortunately, I have not yet gained the ability to see great distances or spot Hobbits wearing Rings of Power):

With all this (and new levels of pain each day!), I have also discovered that I can no longer cry. That's right. My eyes can no longer physically shed tears.

I did a medical experiment on myself. I watched the saddest movies I have ever seen, movies that have historically proved to utterly reduce me to a sobbing mess curled up on the floor. 

(Tears of the Sun and Hotel Rawanda if you're wondering. I would have also watched Life is Beautiful but at that point I had concrete proof that I could no longer cry, and watching a cry-movie when you can't cry is like trying to take a shit when your constipated. It's unpleasant.) 

If I did not cry while watching these movies, I would know that I am either (a) a heartless flesh-beast or (b) no longer capable of expressing common human emotions.

Immediately I knew it was not option (a), as within moments of the movies starting I began sniffling, with my breath catching in my throat, getting all red-faced. Alas, the only thing I was missing was the tears.

There is something very cathartic about the feel of warm, salty tears rolling down your cheek.  It is a feeling I probably won't ever have again (unless they invent robotic implants for people like me.) My eyes are constipated.

Oh! Speaking of implants, I now have plugs in my tear ducts to help keep what little moisture I do get on my eyes from draining away too quickly. They are little sticks smaller than a grain of rice, and they just shove 'em right down into the tear ducts. Did you know the human eye has a tear duct in the upper lid, too? I sure didn't, until the doctor started shoving sticks up there. Fascinating. 

(I was too lazy to draw this myself)

The punctal plugs (as they are officially called) don't seem to be working, but I limp through the day with eye gel, prescription eye drops and warm compresses. Fortunately, my eyes only hurt when I use my eyes, so there's that.

I guess I shouldn't complain. I could be blind. However, that silver lining only gets me so far, and after an hour of Glass Eye getting my eyes gouged out seems pretty enticing. 

Anyway, if I don't cry at your funeral, this is the reason why. (Or maybe I just wasn't that into you.) 

Here's Something Embarrassing

So, here's something really embarrassing that I'll probably regret sharing to the entire Interwebs. But here I go! (*Waves to parents*)

To prepare for my transplant, I had to undergo a series of orientations to help cope with all the crap (literal and figurative) that I would encounter before, during and after said transplant.

Most of these orientations involved me in a group of at least seven other transplant patients, along with their caretakers/family members. Often times I was the youngest patient in the group, by at least forty years. (I like to think they called me Baby-Face McGee.)

The orientation I'd like to talk about today, however, is one I call Cancer Sex-Ed. Cancer Sex-Ed involved much more than Sex-Ed for transplant survivors, but I only remember the most embarrassing moment of this orientation. The Sex-Ed part was meant to help survivors cope with their messed up genitals and their (depressing?) sex-life post-treatment.

After going over other things, like GVHD, immunosuppressants, and other typical, gender-neutral side effects of a bone marrow transplant, the nurse leading the orientation went into what women - and only women - get to look forward to after all the cancer crap. In most cases, after radiation, chemo and a bone marrow transplant women's bodies are forced into premature menopause.

"In combination with premature menopause and treatment," said Nurse-Face McGee, "most women experience vaginal dryness."

Oh, did I forget to say that I was the ONLY female transplant patient in the room?

With my mom...

And my dad...

 

And one other MALE patient...

With his mom...

 

And his dad

 

So, for a very brief, very embarrassing moment, "vaginal dryness" became "my vaginal dryness". And then the orientation became about my vag and how messed up it would become after my transplant.

To make matters better (worse? apocalyptic?), Nurse-Face proceeded to explain different types of lubes and jellies I could use to overcome said dryness. Did I mention my parents AND a stranger's parents were present? Listening with their ears? Thinking thoughts? Thoughts that involved my lady-bits? It was like having a pap smear in front of an audience.

I think it was also the Male Patient's birthday. Happy birthday, Strange Male! Worst (best?) present ever!

Anyway, that happened.

Moral of the story? Uh, how about, make sure you're not the only lady patient in the room during talks about malfunctioning cooters. That's why ladies go to the bathroom in pairs.

One thing I've learned from cancer treatment is that there is no such thing as privacy or dignity.

Scars

So, I haven't posted in a while. The reason for that is I got a new air freshener and I'm deciding what it smells like. It's supposed to smell like a lavender bush, but I can't figure out which part of the lavender bush. I've narrowed it down to either the armpit or the butt crack.

Anyway, a few days ago I had an interesting encounter involving my scar. First off, I'm sure everyone who's been following my blog from the beginning (so pretty much all the popular kids in class) knows that I had leukemia. In my case, I did not need surgery to remove any tumors. Most of my scars are either emotional or from my cat, pre- and post-cancer (the little shit). However, I do have scars from all the tubes and ports they've jabbed into me.

For four weeks I had a PICC line in my left arm, and another PICC line in my right arm for one week (and then for one glorious hour, two PICC lines in both arms). Each PICC line left a little dot-scar on each of my arms. After my PICC lines were removed because of blood clots, I had a medi-port for about four months. Then they ripped that one out and put in a Hickman Line, which I constantly referred to as my Tubes.

"Your tubes?" my nurses would ask, looking around for some bladder catheter that I forgot to mention.

"Yeah, my Tubes." And I'd swing them around like nipple tassels. (Don't get excited, I'm not drawing a picture of that, you pervs.)

My Hickman Line was more like a PICC line, in that it was a tube (hence its nickname) that, instead of jabbing into my arm, they jabbed directly into my chest. It left a little triangle star, which kind of looks like a fleur-de-les, which I think makes me royalty now.

My medi-port was by far my favorite chemo receptacle. Getting it installed, however, was the most painful, especially when the pain meds wore off during the procedure. They told me after the procedure that they had given me, a 5'2" 120 lb girl-child, the same amount of sedation they would give a 6-foot, 250-pound man-ape. "You could drink all of us under the table!" they said, laughing doctorally. All I said was, "Quit yapping and crank up the juice! I'm starting to feel lucid!"

See, what they do is slice open your chest/boob area, jam the thing into a nest of pectoral muscles, and then yank a layer of skin over it. They tucked it away nicely and as long as no one looks in your general direction, they won't notice the two inch scar on your chest. The scar is just high enough that it peeks out of most shirts, but low enough that it's technically on my boob. (Although I may just have weird-shaped boobs...)

I figured posting a picture of by bare chest would really change the tone of this blog, so I drew a picture of what my scar looks like.

It looks like a one-eyed smirky face. I'd been thinking of tattooing another dot to make it a two-eyed smirky face. Or I could add glasses and make it a four-eyed nerd smirky face. Or go all out and add seven eyes and make it a spider smirky face. Haven't decided yet.

So, that's what my scar looks like. And here's the encounter I had involving my scar:

A male co-worker (a notoriously sexist co-worker) had heard about my cancer cruise through the grapevine of work-gossip. He and I were conversing, as you do during conversations, and I don't know how we got into it, but I said something along the lines of: "Blah blah blah my leukemia blah blah blah."

"You had leukemia?" he asked, surprised.

"Yup," I answered, instantly regretting I had brought up my cancer.

But I have verbal vomit when it comes to my cancer. I'm like that kid who's always really excited to show her babysitter her room. "WANT TO SEE MY ROOM? YOU CAN PLAY WITH MY DOLLS!" In may case it's more like, "WANT TO SEE MY CANCER? YOU CAN RATTLE MY PILL BOTTLES!"

Anyway, he answered: "Oh, I just assumed from your scar that you had breast cancer."

First of all, I was really grossed out that he said "breast." I mean, isn't it inappropriate for a male co-worker to say "breast" to a female co-worker? Had I just been sexually harassed? Ew. And he's an older guy. If he was a younger, hotter guy I would have been into it. "Sure, hot stuff, let's talk about my chest scar." But, no, he's like in his forties, married and probably has kids that he takes out for ice cream because he's a great dad. Gross. I kept hearing him say "breast" over and over in my head, all echoey-like.

And then I thought, "My scar is on my chest. Ew, was he looking at my chest? Is that sexual harassment? Or was he looking at my scar, and just happened to look at my chest? Either way, he was looking at my chest! My chest is where my boobs are. Gross. He was looking at my boobs! He's such a perv!" I felt like running home to take a shame shower.

I had the urge to say, "Hey, buddy. My cancer is up here," pointing forcefully at my bloodstream. However, I cordially explained to him that, nope, I had leukemia. He found this interesting, "because, you know, when you hear when a woman has cancer it's usually breast cancer."

I wanted to say, "What is this the 1920s? Look, pal, women can vote, marry whoever she wants, and get whatever the hell kind of cancer she wants!" But instead I quickly ended the conversation before I got arrested for aggravated assault.

But here's what I wanted to say to him:

Look, just because I'm a woman and I had cancer, doesn't mean I had breast cancer, or even cervical or uterine cancer. You know, this may surprise you, but women can get other cancers too. Cancer doesn't discriminate (unlike YOU!), and all cancers are awful. If you're going to assume anything (which as we all know makes an ASS out of U and ME), assume that you don't know what kind of cancer I had. There are hundreds of types of cancers out there. Some cancers just get more press than others. I don't expect you to know them all, but come on. Read a freaking book. Preferably a book about cancer.

And you know what? The scars on my body aren't there for your twisted Guess That Cancer game. If you see a scar on someone, don't address it. Just ignore it. There are only two times when you can address my scar: (1), if you're lucky, I'll bring it up by daring you to guess where it came from (Mexican stand-off), or (2), we're having a scar-off: "Check out this one I got cleaning out my lawn mower." "Oh yeah, well, I got this one trying to shave my back while standing on my head." Only toddlers get a pass for ogling scars, but that's because they haven't been civilized, much less potty trained. You, sir, are a grown ass man. And a perv.

So what can we all learn from this little anecdote?
1) Don't assume anything. It makes you an ass.
2) There are many cancers out there, and they all leave scars.
3) Don't look or talk about my scars like we're buddies. We're not. I don't like you.
4) You're kind of a perv.

But you know what? I'm not self-conscious of my scar. Never have been. Never will be. In fact, I think its pretty bad-ass. You don't go through life without a few scars, and I wear mine like a badge of honor.

... Just don't look at them. You'll go blind by its awesomeness.