Friday, August 31, 2012

Live, Laugh, Love...and everything in between

My Love Box quote today is: "A good laugh is sunshine in a house."~~William Makepeace Thackeray

Thank you Mr. Thackeray, whomever you are, and thank you to whomever added this quote to my lovely, awesome Love Box. It's something I needed to hear.

The thing is...having stage IV cancer and knowing that right now, this second, things are probably growing inside me and not knowing if this next treatment will work either (if I ever actually start it)...well, it's all pretty serious scary stuff. And I realized as of late, with all this waiting and all this frustration and disappointment...I lost my sense of humor. And that really sucks because I kinda like my sense of humor and laughter is just so necessary for life and happiness and release. Ever laugh so hard that you felt like you just had a full body workout? Or laughed so hard you peed yourself? I once laughed so hard, I spit my drink out all over the table. I am a classy act like that.

This week has offered some fresh new humor in my life (including my new love of Honey Boo Boo...anybody else been watching this?). I've been laughing this week. Oh, I have been crying too, but at least the light is creeping into my darkness. Maybe something clicked inside of me and reminded me that life is funny. It's not all drama. It's full of comedy too, if you look for it. It's not all somber, grim, laced-up seriousness. And I need to lighten up. Big time. I I want to spend my days being serious and scared or do I want to spend my days finding the good and the funny and the light-heartedness of life? know the answer.

So, if you recall from my last blog...I decided to go with the disatinib/bevacizumab study, which was the second of the two that I was originally trying to decide between. But, for some reason things keep getting delayed. Originally, I felt like things happened as they did for a reason and that this was meant to be...and now there are all these delays and I am wondering "Is it a sign?" "Is it a test?" Hmph.

Anyway, the latest delay really makes me laugh. Yesterday, I went in to sign the paper work, but first I had to give them 11 vials of my blood and a cup full of urine. And wait. And wait some more. Finally, they call me back to one of the exam rooms and they tell me that one of the blood test results came back that could be an exclusion. I'm thinking my hemoglobin level or my white blood cells or platelets...or my liver function. Anything other than what came out of my doctor's mouth. Something that made sense. Nope. There is apparently a blood test for pregnancy...and mine came back positive. Bwahahahahahaha. Bwahahahahaha. might not think that is funny...I have a husband, we're practically newlyweds. We have privacy and time. But, trust me when I say...there is no chance that I am pregnant. Zero. First, I have been "menopausal" since February. Second, the location of my cancer makes it really difficult and painful for me to do baby-making stuff. And with all the drugs I am taking, I don't even know if I'd really want to anyway! In fact, neither my husband or I can even remember the last time we even tried to engage in baby-making behavior. I feel terrible. I am the worst wife ever. But, my hubs knows that if he forced the issue he would be like the worst husband in the world...times a million. I am so sorry honey. That being said, when I called to tell my husband, he laughed too and mentioned something about planning the visit from the three wisemen to bring me gifts. Seriously...of all things? A positive pregnancy test??!! Bwahahahaha. And not to mention, if I were pregnant, could you imagine the alien baby inside of me. With all the cancer drugs and painkillers and radiation from scans and x-rays, etc. I keep picturing something like this: I had to do a repeat blood test yesterday and it still came up positive. (I also did a urine test...not pregnant per my pee.) I have to go back on Tuesday for another repeat blood test. If it still comes up positive in my blood, I will have to have an ultrasound to prove there isn't a baby in there. Seriously? All this drama so I can start this trial??

My best girlfriends and I have been going to town on this alien baby theme (or alternately the immaculate conception theme). Why not? It's provided hours and hours of fodder and entertainment for our demented brains. Ahhhh. Good times.

Anyway...with all this lack of treatment and growing tumors and such, I've been having increasing pain. And, as I've mentioned before, the docs and I have been struggling to get me the right balance of being pain-free or mostly pain-free with being conscious or not comatose. It's not working. I've become a full on narcoleptic. I am mostly ok if I am moving about or interacting with someone in person, but the second I sit down to read or play on my iphone or watch TV or sit in a waiting room, I become a head-bobbing fool.  And I HATE it. HATE it. It's like a loss of some control of my own self. My brain gets confused sometimes. I don't even realize I've fallen asleep until something wakes me up. If you receive a strange text message from me...I'm probably in head-bobbing mode. I have 'liked' Facebook pages while in this mode, sent friend requests, and even on occasion I have commented garbled nothings on someone's Facebook status. Likewise, I have sent accidental tweets. Yesterday, in the NIH waiting room, I woke myself up when I dropped an entire open bottle of soda on myself and all over my purse, the floor and the chair. Ok, I salvaged half the bottle, but seriously, who does that? Apparently, narcoleptic Vash does. 

My husband took this picture of me the other night and I can't believe I am sharing it since I was mortified at the idea of him posting it on Facebook...but it IS kind of funny and does kind of capture what about 50% of my life looks like right now. is what happens when I try to read:

Seriously, I'm just reading and I fall over? Pathetic....yet hysterical in its own special way. Obviously, this provides plenty of entertainment for my husband. He's probably got a collection going somewhere. 

Ok...well, believe it or not I am starting to reach that wakefulness threshold and I want to send this before I start my narcoleptic head-nodding. Thanks once again for reading this post and for being my greatest supporters. 

My challenge for you this Labor Day weekend, is to go out in the world and find the things that make you laugh out loud (without hurting another's feelings). Look at your life and each day of this grand holiday weekend  and search for what is good and humorous and makes you smile and laugh. Release that which makes you sad or angry. LIVE, LAUGH, LOVE.

Love, Vashni

Tuesday, August 21, 2012

Every Good Story Has Lots of Twists and Turns, Right?

So today is my husband's and my anniversary. Two years! Yay! Wanna know how I know this? Cause my husband wished me a happy anniversary this morning. I forgot. Doh. Seriously though, I didn't totally forget about it. I'd been talking about it just this weekend and even talked about dinner plans just last night. 

The problem mind. It's been on so many other things lately. Dark things like cancer and dying. Deep things like God and Faith. Stuff that could be near or could be way far down the line. But, I need to do better. None of it should supercede the present. None of it should occupy so much of my brain, that I wake up thinking about death and dying instead of living and loving...right now the present moment. Yup...I need to do better.

Sooo....anyway...things are changing again on the cancer rollercoaster. I honestly think that this latest change is a really good thing. In all honesty, I can't help thinking that things that developed this week were meant to happen. It's even a bit freaky. To me. Maybe not to anyone else. I will do my best to explain. my last treatment of any kind was on July 6th. That's a little over 6 weeks of my body being unhindered by any kind of anti-cancer medicines. Who even knows what kind of party those cancer cells have been having inside my belly. Based on the pain (new pain and old pain and increased pain) I have been having and the chills and the fevers and the cold sweats and the lethargy...I'd say those cancer cells in my belly have been living it up these past 6 weeks.

By doing the liver embolization, which I described in my last blog, we would be focusing solely on my liver tumor and allowing the rest of the cancer in my abdomen and pelvis to fend for itself for AT LEAST another 6 weeks, if not more. I have always had a little concern about this, but historically the stuff in my belly has been slow-growing (when under treatment). And, unfortunately, because of the toll a liver embolization would have on my body, we wouldn't be able to do the embolization and systemic chemotherapy at the same time. (I don't want to be one of those cancer patients who dies from chemotherapy and not from cancer. Ha.)

If you recall from a while back, there was a second study I was interested in when I was first starting out at NIH. That study sounded super promising to us because it included a drug (disatanib) that was on my "list" of "drugs that may benefit me" on my targeted molecular study. It also includes another drug (Avastin {bevacizumab}) that I have never tried but has been pretty successful in many types of cancer and seems to help other chemo drugs work better than they would alone. BUT...I never really deep down wanted to do this study because I would have to have THREE more liver biopsies. And after the 2 I already had...uh uh...I just was VERY reluctant to go there.

Here's the new twist: In the shower, over the weekend, I discovered a lump on my neck, left side, right above the clavicle. I told my doctor about it and he told me that was a concern and to stop in and see him on Monday (I was going to be there anyway, begging for more pain killers). So, this thing on my neck, is more cancer. A new tumor. It is located on a sentinel lymph node known as "Virchow's node" and it is uber common for metastasis to occur in this node in patients who have abdominal cancer. The fact that it is there now (and a smaller version of it has been there for awhile as we look back on previous scans) doesn't really mean anything new about my cancer (yes, it's growing...but like I said...I've been off treatment and that's what cancer does). 

BUT, there is one new thing it does bring to the table. This node is a pretty good size (bigger than a marble, but smaller than a golf ball) and is palpable to the touch. Which means that it is the perfect place to take biopsies! Nearly painless easy peasy biopsies! 

Surgery is off and chemo is on. And I feel really good about this decision. We will once again be treating the whole body and not just the liver. Let's just hope that the liver responds a little more positively to these drugs than it has in the past. 

As always, I am so grateful for all your prayers and support and love. It really keeps me going through the rough patches...and I've been having a lot of those lately. So thank you for being there for me.

Love to you all, Vashni

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