Wednesday, July 18, 2012

BODA!!!

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I think I talked about how much I loved the boda boda in Uganda. I met Steve, my personal boda driver, early in my stay in Kyabirwa. (When I say "personal," I mean that I had his cell phone number and I could call him when I needed him and he's come just about anywhere to pick me up.) He was AWESOME. It was so nice to know that I had someone that I could trust and rely on.

This video was taken on my way from the village, heading into Jinja one day (I was on my way to the rainforest for a mountain bike ride.) I love it. I think it gives a pretty good glimpse into the reality of what I saw every day.



Just to be clear (or maybe over-clear) - this isn't the village, and it's not the city - it's sorta skirting the city...

Ohhhh I love the boda...

African Babies

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Remember how I was gonna go save African babies???

This didn't just happen once, it happened every time I came close to a baby that was old enough to be afraid of the mzungu. Soooooo funny!!!



FYI - Winnie, the 11 year old daughter of the family that I lived with was holding the baby. No, she's not the mama, she was just being motherly. ;-)

I MISS AFRICA!

Saturday, July 14, 2012

Writer's Wall

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Ohhh, the struggle to get this out of my head...

People keep asking me if I'm journaling this process, the cancer, the chemo, etc... "Yeah, duh!" I say. Which is hilarious because I think in my mind I actually believe that answer - even though it's a total lie. I mean, I have been journaling - sorta. But nothing is coherent and I hate writing something down without actually having something to say. I've read so many blogs about cancer and chemo. I don't like them... As though having cancer suddenly makes you a writer. (As though I have any more validity than they do as a writer - but whatever, you get my point.) That being said, I understand why people start writing about this stuff when they go through it. It's weird, and there is a pressing desire to explain every single symptom. I think partially to re-connect with the rest of the "normal" humans out there and partially to try to find someone to commiserate with.

The reality is that for the first 33 years of my life, I did not have cancer. Oddly enough, I can't really remember what it was like to not have cancer. So I'm not really sure what to put up here... Do you want to know my symptoms? How the journey's been so far? Do you want details on my days? Overall emotions? Do you want to know what I'm learning?

And then I realize that I don't really give a shit about what other people want to hear about- this is MY BLOG.

Chemotherapy does weird stuff to a human. I don't know anything about any other chemo than the one I'm going through. When I explain to my amazing chemo nurse, Carrie, whatever the latest symptom is and ask her if it's "normal" she always says, "Sweetie, it's poison... Nothing about it is normal." She then usually follows with, "But it is a symptom we expect..." and then explains why it's happening to my body. I love her matter-of-factness and the onslaught of information I come away with. She has been such a gift to me through this process.

To put this dissertation into perspective, here's my list of side-effects:

- Hair loss. ALL of the hair on my body EXCEPT my eyebrows and eyelashes. (They're getting REALLY thin, but I'm so stinkin' lucky to still have some!!!)

- Pain. General body pain. Everywhere. Radiating from the inside out.

- Leaky eyes. I always look like I'm crying.

- Nausea. I would say that 75% of the time I've got a deep seated, underwhelming tinge of nausea.

- Brown fingernails. Weird, and painful. Like when I used to lose my toenails from running. My Dr has assured me that I will not lose my fingernails.

- Thin skin. Literally, it comes off when I scratch. Ack!

- Peely skin. Most of the skin on my hands and my feet has already come off once.

- Low white blood cell and platelet levels. Results in an incredibly slow healing process, mostly on my hands. It looks gnarly, too - like I have some kind of disease. My Dr has also asked me to stay off the mountain bike and the mountain as he doesn't want me to fall and cut myself. (Platelets are responsible for blood clotting.) If the platelet levels get too low, they'll do a transfusion. So far, I seem to be able to bounce back on my own. They give me a white blood cell booster shot after each treatment that is THE DEVIL. It makes the bone marrow swell (where white blood cells are created), but bones don't swell, so you can imagine how awesome the bones react. (It hurts, a lot.)

- Constipation and diarrhea. Yes, that's right. My days of normal poops are long gone.

- Loss of feeling in my fingers, toes, and lips.

- Loss of taste. Or, more accurately - everything tastes like crap. Except chocolate covered peanut butter pretzels. Ha!

- Brown splotches of skin randomly, anywhere on my body.

- Rashes. On my back and my head. It might be an allergic reaction to the chemo.

- Bloating & weight gain. Probably from the Prednisone and the Lupron (see below) - oh, and the fact that I workout about 1/10th as often as I used to... and let's face it, I've always managed my weight with exercise. {sigh...}

- Menopause. In an attempt to preserve my fertility, the doctors give me a shot that sends me into (temporary, hopefully) menopause. So, Add all the symptoms of menopause to the list. Namely: HOT FLASHES. I never understood how hot flashes could be something to complain about, until now. Seriously, they bring my discomfort level to a 10 out of 10. ACK! Upside: Not having a period!

- Fatigue. Incredible, unrelenting fatigue.

A dear friend of mine won a battle with cancer a few years ago. I always remembered his way of describing chemo to me, "Chemotherapy is systematically taking a person as close to death as possible without actually killing them." It's true. My main issue with all of the symptoms above is a general lack of connectedness to my body and to the world around me. Without the ability to feel, taste, and smell, I become disoriented and confused. In my worst days after chemo treatments, I can literally feel my body and my soul disconnecting from each other, like I'm floating around behind myself, watching myself go through my daily activities. Everything is slow and foggy. I hate it, but more than that, I find it to be the most distressing, uncomfortable feeling I've ever known.

The first few treatments I really struggled with trying to find some kind of understanding of what was going on with my body and how to react in a way that would allow me to survive this. Here is the conclusion I've come to, it works for me:

Life is a spectrum, it is comprised of good days, bad days, really bad days, and great days. We are bound to have some really, really awful experiences and some really, really amazing experiences - some of which we will have control over, some of which we won't. Some of the stuff that happens will suck life, and some of the stuff that happens will fuel it.

Chemo is rough. It's a major life-depletor. I can't control it, it just is. So I'm systematically trying to balance it with things that fuel life. 

It became very clear, very quickly that I was going to need a home. A place to put all of my things at the same time. A place to rest, a place to be sick, a place to have friends over, etc... So I got a little place to live. Ahhh a home. I literally cried when all of my furniture was placed and I sat down on my sofa. What a comfort!

I got a puppy. My little man, Tate. He is CRAZY, but he is an amazing little love. I found him at a yard sale - yes, a yard sale! He's a mutt. I have no idea how big he'll get, but I'm hoping he'll be big enough to be my running partner when I get better and he gets older. He's 80% potty trained now and does some really stupid tricks. Great news, he LOVES the trail, and he runs in his sleep (just like his mama). We're a pretty sweet pair.

For the first two treatments, I was still able to climb, so I did. I climbed Mt Baldy, bald - twice. (So stupid, but such victories for me!!!) I would run, too - when I was still able. Since my body seems to be rejecting the pounding that comes with running these days, I bought a bike. Very, very few things feel as good to me as the sensation I get when my heart beats fast. It's as though I can feel the clean blood pumping through my body, bringing me more, new life. Where losing my fitness has been one of the most difficult parts of this journey, finding it in a very slow three mile run, or 15 mile bike ride has given me life tenfold.

The conscious effort to create and absorb the things that fuel life has given me a new respect for these things. Simply spending time on my patio or my sofa with friends, tasting wine, cooking, smelling a flower, swimming, seeing an old (favorite) musical for the tenth time, holding a newborn baby, or having a conversation with a stranger - all seem to be catalysts to chemo, and then some. Despite chemo's attempt to kill me, I actually have an excess of fuel for life...

So I guess you could say - I'm happy.

I'm so looking forward to the next chapter. I spend a lot of time in my head, wondering what version of this woman will be spit out of this experience, what's in store for me, what I want, and how to get it. I look forward to fitness, having control over this body again, to training Tate on endurance running and trails, to road trips, to going back to Africa, and all of the great unknown.

Logistically, I have two treatments left. I will have a PET scan a couple weeks after that. The cancer is in my breast, the lymph nodes under my arm, and in the internal mammary lymph nodes (within the chest wall). The internal mammary lymph nodes cannot be operated on. The Dr. is confident that the 6 rounds of chemo will kill the spot in the internal mammary nodes. The PET scan will let us know if it does. Assuming it does, I will have surgery - bilateral mastectomies with reconstruction - about a week and a half after that. From there, it's a long process of breast reconstruction, combined with "light" intravenous chemo every three weeks (to complete 52 weeks), all of which I'm hoping will be done in time to celebrate my 35th birthday.