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.

Night Cramps

I lost all my muscle mass during treatment and after the transplant. Even one year post-transplant, I'm still regaining my muscles. Either because of a lack of muscles or poor nutrition or a side-affect from one of my many pills, I get very painful leg cramps almost every night usually around 3 AM.

Lately they've been manageable and last only for a short time. However, every once and a while they jerk me out of deep sleep and the only way I can get rid of them is to shuffle around my house until they go away. They are awful and usually come back right when I'm about to go back to sleep.

To make matters worse, my cat thinks my midnight shuffling is the perfect time to hunt! Perhaps in her mind I look like an injured wildebeest hobbling behind the herd, prime prey for great wild predators like her. My whimpers and grumbling triggers some primal need deep in her mind and she sees me only as dinner.

And so it ends with me limping feebly around my house while my demon cat tries to take me down.

Light the Night

So, 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, I've been wanting to participate in their Light the Night Walk fundraiser events. Finally there is one in my neck of the woods! Yay! My family and I are walking to raise money so other cancer patients can continue to benefit from the great programs that helped support me during my Cancer Cruise. 

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, Chemosabe Socks, or you can even join us on October 26th if you like!

http://pages.lightthenight.org/gba/EastBay13/ChemosabeSocks

The War of 4 AM

Ok, so this isn't quite related to cancer stuff, although I when it comes to sleep, I need it more than ever these days. My cat, however, doesn't see it this way. And so every morning around 4 AM we engage in this passive war in which she struggles to wake me, while I strive to stay asleep.

This is how most mornings go:

Chimera-ish

As I said in this post I'm a chimera now - I think. It's all pretty complicated. As far as my doctor says I'm 96-98% my sister. So, 4-2% of me is still me. Here's what I do know about being a chimera:

My blood type has changed.
I used to be AB, a universal recipient.

Now I'm A, the nerdiest blood type.

I am genetically my sister.
My blood, my spit, my skin cells are genetically and chromosomally identical to my sister - so I can frame her for murder if she ever pisses me off!

I am allergic to my cat.
I've never had any allergies in my life. But my sister has allergies, so now I do as well!

But that won't keep me from kitty snuggles! 

Twenty-Five... Again!

It's my birthday today! Uh, my original birthday that is. I can't believe that I'm 27 already. I don't feel like it. I know everyone says that on their birthdays, but I really don't feel 27. I just can't wrap my head around it. My life froze when I was diagnosed with cancer, and when I thawed just a few months ago, I found that I was not 25 anymore, but 27! Sometime during the months of chemo and then a full year recovering from the transplant, I had aged almost two years. On paper at least.

Cancer made being 25 pretty crappy, so I decided call a Mulligan and get a do-over. I'm not 27 today. I'm 25 again!

Maybe next year I'll be 25 again!

Happy Re-Birthday!

My buddy just underwent his transplant this past Friday. Help wish him a happy re-birthday and send good thoughts and positive vibes as his new cells make themselves at home.

Check out his blog here!

Pretend Human

I haven't been able to post too much in the last month. I've been distracted with my new human life. It's not easy, pretending to be human again. I say pretending because that's what it feels like these days.

Suddenly one Friday evening I was uprooted from my home, dislocated from my familiar neighborhoods, my favorite restaurants and parks. I spent over a year of my life isolated in hospital rooms, getting poked and prodded, groped and palpated, shoved into noisy machines, forced to stand in stuffy glass boxes, told to strip down, put this on, take that off, hold this, stand there, lay this way, sit up, lie back, take this, don't take that, go here, breath out, now breath in, hold your breath. I was a sack of flesh, carried and wheeled and shuffled here and there, defined by the numbers on a computer screen, by scans and X-rays. 

Everywhere I went I was greeted with the ceremonial, "Please confirm your name and date of birth." I'd answer accordingly. The tech or nurse or whatever would compare the notes to be sure that I had answered correctly. I answered incorrectly once. I'd given my birthday wrong. The data on the page didn't add up. Who was I? What was I doing here? Oh, sorry. I meant to say this. Crisis averted. The numbers match. You are the bits of typed ink on the page.

I learned to speak a new language. I learned how to navigate a new world. I became another being, a creature shaped by cancer, devoured by chemo and radiation, and then reshaped by transplantation of foreign DNA. Somehow I emerged on the other side less human that I was before.

It wasn't my choice, and I entered this world kicking and screaming the whole way. If I had to go, I would not go gracefully.

And then suddenly I was set loose back into the world that cancer had so rudely ripped me from. I beamed back down to Earth like an alien abductee, shaken, sore from the probing, traumatized by an experience that I could never hope to fully explain to any other living creature.

So, I walked - slowly because of the fatigue - back into a world that was now foreign to me. How could that happen? It had only been, what, a year? I couldn't believe it had only been a year. I feel as if I have aged ten years in one (maybe this is what dogs feel like). It's as if I've been frozen in ice for decades only to be thawed and awoken into a futuristic, unfamiliar world. (I can go all day with these metaphors, people.)

I try to adjust to the Human world, try to understand their gestures and their language. The language is familiar to me, as if they speak a language that I once knew a long time ago, but have now forgotten. I pick up a few words, but the context is foreign to me. Apparently I belong to this world, that I am a Human as well. It's futile to explain that, no, I'm not Human anymore. They have accepted me as one of their own, so I go along with them. I pretend to be human because it's expected of me.

As far as the Humans are concerned, I'm completely normal. I go to work, I pay my rent, I feed my cat, and I make social appearances and participate in conversations about how dumb Congress is or how they need a stop light at Broadway because it's terrifying turning left onto that street. They ask how I'm feeling and if I'm adjusting to their way of life okay. I say that things are great, because no one really wants to hear the real answer.

I can never fully become human or normal again. The consequences of chemo and the transplant will follow me the rest of my life.     

Graft Versus Host Disease

I've been out of internet for a while so I haven't been able to post about the aftermath of my SCT. But now I'm back, and I get to bore you guys with more lame cartoons and second-hand knowledge. Enjoy!

This post is about Graft Versus Host Disease, or GVHD. Graft Versus Host Disease refers to the literal war between the "graft" cells (donor cells) and the "host" cells (recipient cells) that occurs after a transplant.

When I made this post, my first post on this blog, I knew that my body would become a battleground on which chemotherapy drugs would fight my cancer. Back in December 2011, I never thought I would need a transplant, but looking back that post I realize that post is also a very good depiction of what GVHD is.

The moment my sister's cells entered my body, they began warring with the remnants of my own cells. Now, the reason I had Bone Marrow Drano (see here) was to ensure that my sister's immune system would win this war and have little resistance from my immune system. (Oh yeah, did I not say that a BMT is basically an immune system transplant? Try to explain THAT to your friends!) The way I think of my bone marrow transplant is this: cellular genocide - a genocide in which the complete destruction of the native cellular population is the preferred outcome.

The way my doctors described GVHD is this: My sister's stem cells know that they belong in bone marrow, so once they entered my body they traveled through my blood stream right back to my bone marrow, which, thanks to Bone Marrow Drano, had been cleared of its old occupants for its new tenants.

Donor cells don't know they've left the comfort of their home, and so when they see a cell they don't recognize they tend to overreact and, well, kill it. 

These murderous encounters manifest themselves as GVHD.

The first three months following a transplant the body is in a very precarious situation. Not only is the body struggling to rebuild an immune system that had been wiped out by radiation and chemotherapy, but it must also survive the internal battles being waged by donor and recipient cells as they come into contact with one another. 

During these three months, doctors are on the lookout for three specific types of GVHD, called Acute GVHD: GVHD of the liver, of the skin and of the gastrointestinal tract. For three months post-transplant I was in the cancer clinic almost everyday so my physicians could check my liver counts, check for any rashes, and monitor my bowel movements and my appetite. 

Once the body survives the initial three months post transplant, and you haven't developed serious Acute GVHD, then you are deemed "somewhat normal" and released back into the wild - well, almost. After surviving Acute GVHD, you have a lifetime risk of developing Chronic GVHD.

What's the difference between Acute and Chronic?

Acute GVHD manifests itself in three distinct places:

Chronic GVHD manifests itself, well, pretty much everywhere:

All GVHD, Acute or Chronic, is managed by the use of immunosuppressants, which - you guessed it - suppress the immune system.

But, wait, you ask? Why would you want to suppress an immune system that is no stronger than a wet tissue?

We now enter what I call The Post-Transplant Paradoxical Paradox!

Here's the Paradox as I experienced it: After my transplant, I had no immune system, so I needed my sister's immune system to develop quickly so that I could survive the trip from the car to the clinic without getting pneumonia. Simultaneously, they didn't want my immune system to develop quickly so that my new immune system wouldn't turn on me. Immunosuppressants (for me, it was cyclosporine) facilitated this paradox.

Basically this is what I heard daily:

So, that's the gist about GVHD. Stay tuned for my next post about what GVHD I experienced (and continue to struggle with) post-transplant.