Wednesday, August 15, 2012

Mountains, Tunnels and Catheters...Oh My

Sooo...I just got back from a week's vacation in the mountains of WV. To say that I love the mountains would be an understatement. The "mountains", the "woods", the "forest"...whatever you want to call it...being present in this environment is truly one of the places I feel closest to God or to Heaven or to the divinity that resides inside my soul. I feel a sense of calm and inner peace in the mountains. The cool breeze, the sounds of nature...bubbling brooks, happy busy birds, humming bugs...the dank moist feel of the air and the smell...oh the smell. It's the mixture of burning firewood and damp earthly organic freshness. It's not something someone would make air freshener or a candle out of, but if I could bottle up that smell...I totally would.

When I was a youngster (1-2 years old til about 15 or 16), my family and I would spend 1-2 weeks each summer at my uncle's cabin on Tussey Mountain near State College, PA. This was no luxury cabin. It had electricity and it was safe and full of life (and mice), but there was no running water, no TV, no modern entertainment. We walked at least a mile (hard to say since I was young-ish) to get fresh water from a nearby spring; we brushed our teeth in the stream that ran through the property; we had "spit baths" from water we heated on the stove; and we relieved ourselves in a 2-seater outhouse that faced the side of a very steep and beautiful mountain. There is nothing quite like take a crap in the middle of the forest, listening to the crickets sing and watching fireflies dance by and maybe even, if you were lucky, spotting a deer in the woods towering above you. Ahh.

As a kid, we entertained ourselves with hiking, playing in the stream (I am still missing some fisher-price men somewhere on that property), swimming at Whipple Dam, building mini "houses" and "yards" out of rocks, sticks and moss. Board games were nightly entertainment, as were the frequent campfires and roasting and toasting of goodies. I like to think that the memories I got here on these "low-budget" vacations blow my friend's memories of their fancier vacations out of the water. I always tell my friends who are parents and who want to take a vacation but can't afford Disney or Great Wolf Lodge,'s not the cost or the setting, it's the togetherness, it's the imaginative pretend play that comes out when we don't have modern distractions and entertainment, that really build the good memories. The free stuff that just comes along with being on a journey with your loved ones, whether it's a tent on a mountainside or a luxury cabin on a cruise ship....

Anyway...this cabin in WV was more of a luxury cabin. We had satellite TV and free wifi and running water, etc. But, the things I really loved (OK I still enjoyed the Olympics on the Direct TV and long hot showers in my luxury bathroom)...but, the things that really had an impact on me were the things that were pretty much free and untouched by modern convenience...building a campfire, watching the kids chase salamanders and snails in the lake, kayaking at Lake Cacapon, and hiking through the Paw Paw Tunnel...

This last one brings me to a halt. It's an activity that ended up ripping open some pretty major emotions and wounds and hurts in me. At the time, I wondered if I should have skipped it altogether, but in retrospect, I believe that this was something I needed to do. I feel almost silly that such a walk in the woods would end up being so emotionally rough for me. For others, it was just a walk, but for me...a bit more. But, it is what it is...

Let me explain...first what Paw Paw Tunnel is and then what affect this trek seemed to have on me. The Paw Paw Tunnel was probably about an hour of winding roads and scenic views from our cabin. It is part of the C&O Canal towpath (this part in MD) and is a 3,118-foot long canal tunnel that was built to bypass a very winding bendy stretch of the Potomac River. The tunnel took 14 years to build and was carved out completely by hand (and picks and shovels and dynamite). There is a lot more history out there about it, but I'll spare you my interpretation. At any rate, it all seemed pretty amazing to me. 

When you first enter the tunnel, you can see the other end.  It doesn't seem like it will be all that long of a walk. But, once you are inside, it gets dark. Very dark. The ground is a bit uneven and you need a flashlight if you hope to save yourself from the occasional mud puddle along the route. Walking is hard for me. A few minutes of walking causes me to have deep burning aching pain in my back and pelvis. So much so that I have to stop and rest...either sit down on something or cop a squat wherever I am. This means that my trek through the tunnel and back was...well...mind-numbingly slow. Even my sister-in-law, carrying a 1 year-old and walking with a 3 year-old on her hand, managed to traverse this trail much much faster than I (not that we were in a race). And as close as that the light at the end of the tunnel seemed to be...the further away it really was. Seriously.

Anyway, my husband stayed by my side the entire time, bless his heart. But, I found myself needing to rest more and more we walked this "shortcut" through the fields of the Potomac River. During one such rest in the tunnel, I said to my husband of my participation in the Nations Triathlon just 3 years ago, "Remember when I swam in the Potomac? And then I got out of the water and I rode my bike 25 miles? And then I got off my bike and I ran a 10K? And remember how I was barely tired?"

This set off a whole alarm of emotions in me. How could I possibly be that same girl? And I did nothing wrong to get to this point. I simply "got cancer" one day and now I have no energy and no stamina. I can barely walk 100 feet without needing to stop and rest. I am only 39. And...and...IT JUST ISN'T FAIR!! It's totally not fair. And no matter how hard I try to be "normal" and live my life like I did before, I can't. My physical body won't let me. Like a slave or prisoner, my body has me in shackles and it's so not fair. My will power, my emotional fortitude, my heart, my soul...they are very strong. But, this cancer has me locked up and it makes me sad and it makes me angry and it makes me want to scream and cry and shake my fists at the world some days. Most days. Almost every day lately.

What did the tunnel represent to me? How long the trip really is. How I think I can see the light, but just as I think I am getting closer, it deceives me and moves further away. Just when I find a rhythm of something that seems to work...I am wrong and I have to start over again. But you know what else I learned in the tunnel? I made it ...not only to the end, but I turned around and made it back again. I tripped and I stumbled and I stepped in mud puddles. I rested. A LOT. With my husband patiently by my side holding the flashlight. ready to keep moving forward whenever I was capable. 

So...maybe that is what I am doing now. Traversing the tunnel. Resting. Building up my reserves for the next step. I haven't been under any kind of treatment for about a month now...which is a bit scary. I mean, who knows what is going on inside my body. My pain has worsened some and my energy level is pretty, frustratingly low. But, my blood counts are good, my liver function is great. I even learned that the left side of my liver is growing to compensate the damage going on on the right side of my liver. Our bodies know what to do.

I met with my trial doctor and an interventional radiologist at NIH this week. A plan is in place. In the next few weeks, I will schedule and undergo a procedure called Transcatheter arterial chemoembolization (TACE). This procedure will focus solely on my larger "Bad Boy" liver tumor (I am still working on a name) and involves the doctor threading a catheter up through the femoral vein in my groin area to reach the hepatic artery that feeds the liver. The doctor will determine which branches of the artery are specifically feeding the tumor and he will inject high-dose chemotherapy into the tumor directly using a special type of material (DC beads) that will slowly release the chemo drugs into the tumor over time. My understanding is that these beads will also cut off the blood supply to the tumor causing it to basically die. I'm told this is not a cure. This will shrink the tumor or, at the very least, keep it from growing any bigger. Provided that I handle everything well, the procedure will need to be repeated after about a month to capture the vessels feeding the smaller tumors in my liver. Each time, I will be hospitalized from 3-5 days. I won't be able to have systemic chemotherapy for the stuff in my pelvis and elsewhere until about a month after the final procedure. I am a little nervous about that, but from what the doctors say...the bad boy in my liver is our biggest concern. The other spots in my body seem to be slow-growing, though they cause me a lot of pain. Little bastards. 

Anyway...what does the Paw Paw Tunnel represent to you? That you finally made it to the end of this blog post. Ha ha. Regardless, I will do my best to keep you updated as I embark on this latest battle. Thanks for being my co-warriors, friends. This fight is not over!
Love you all, Vashni

1 comment:

  1. I totally "got" your tunnel experience. Sometimes it is the simplest things that end up providing the greatest chance for reflection. Keep fighting... and keep writing! Writing is good for the soul.