Sunday, November 18, 2012

"Unable are the Loved to die"...

"Unable are the Loved to die. For Love is Immortality"
- Emily Dickinson

As the reality of Vashni's passing continues to sink in, I wanted to thank everyone for their help and support, public and private. Thanks to all who donated in her memory to the Foundation for Women's Cancer and Montgomery Hospice.  I appreciate those who walked/ran in her honor at the 2012 National Race to End Women's Cancer.  Thanks to all who took an interest in this site and in Vashni's journey.  I promise to no longer hijack this blog with my posts and leave it be.  For anyone who is interested/bored/has nothing else to do, I've decided to posts my thoughts here.  Also, one of Vashni's dear friends is setting up a website (currently under construction) to honor her memory.


Friday, November 2, 2012


Vashni passed away Wednesday, October 31.  She was kept comfortable in her last days and was surrounded by her closest loved ones.  Her memorial service will be held at Paddletown-St Paul's United Methodist Church, 355 Church Rd, Etters, PA on Sunday, November 11, at 2:30 pm.

I suppose the title of this blog post is intended to have a double meaning.

First, I am overwhelmed by the pain and feel devastated.  I was under no illusions that this was going to suck and suck hard.  But man, the emotional resources reserved for taking care of Vashni throughout her illness and the immediate numbness are now making way for pain and it is pulling no punches.  Dammit.  Thanks to all who have offered support no matter how large or small.  I know I, as well as the many others who are grieving, won't be able to go through this alone so lets certainly not plan on doing so.

Well, enough of that.  The second meaning behind the blog title is that I am overwhelmed at the outpouring of love shown towards Vashni.  I was lucky to have her as my sweetheart and her sweetness has been reinforced many-fold by what's been said about her in recent days.  So, in tribute to Vashni - a sampling of emails, messages, facebook posts, etc said about Vashni. By no means an exhaustive list, just examples of those that capture what a truly special person she was (so don't be offended if I left yours out :) ) I'm not naming names but if you still recognize your quote and you don't want it on here, let me know and I will remove.

"We are very saddened for your loss, the loss of a warm, bright, and very wonderful woman. Will miss her deeply. A very cheerful, laid back, and welcoming person who was so young, these are hard times when so many giving and caring people are lost."

"I can say that I NEVER heard anything but positive words come from her mouth and she would never do anything hurtful to anyone and would always lend a hand for anything. I will say a daily prayer for [her] parents, husband, brother and all of her friends that had the pleasure of knowing such an AMAZING, SMART, BEAUTIFUL, WONDERFUL WRITER and KIND HEARTED person. To her parents I just want you to know that you did a fabulous job raising Vashni into a beautiful well liked and respected angel! You will be truly missed by so many Vashni and you put up one hell of a fight."

"Vashni was one of the nicest people you can meet in life. I will always remember that smile. She is an inspiration to everyone. She never gave up and kept fighting. And now she is no longer suffering. God bless you Vashni. You are going to be missed dearly."

"There were many of days we didn't get along, but we would move on and not think about it again. Days that you didn't feel your best, you still would laugh and try to comfort and reassure others. How could one not admire your strength and courageousness?"

"Your words of encouragement when I was having a bad day or unsure of myself always lifted me up."

 "I forget what the actual topic was of a rare serious conversation we had one time, but you asked me if I ever cried... I said no. Of course, you wouldn't buy it and essentially said BS. (I think that was the same convo you called me a stubborn mule.)
Well, Vash, you won...
I cried today."

"You touched so many lives. You made a difference."

"[S]he was a friend who came with no pretenses. She was exactly herself, and it was exactly perfect. She was hilarious, selfless, and accepting. There was no way you could be around her and not be immediately at ease and enjoying yourself. At the same time, this unassuming friend was one of the most inspirational people I have ever met. She lived each day with honesty, humor, courage and strength...not just the hard ones... all of them. For the past year, that became ever so much more evident. Her blog posts never failed to have a profound effect on me. (I would love to see it be published so many, many more can be inspired by her words!) As our hearts are saddened and heavy from losing such a dear and sweet friend/loved one, we can all take refuge in the knowledge that her suffering is over, and that we were truly blessed to have known her. The majority of people in this world did not know her, so we are among the luckiest few who got to share a part of Vashni's life. I am honored to have had that chance, and I will never ever forget her"

"One morning I texted Vashni and told her I just wanted her to know I loved her and was thinking of her. It wasn't till days later that I realized that the text had gone to the wrong person, someone who is dear to me as well. This recipient, I'm sure, thought it was quite odd to get that text from me out of nowhere, and when she responded I realized my mistake but was none the less happy I said it to her as well.
I then told Vashni what had happened. She was VERY SICK at this point but still able to communicate via text. When Vashni read my text this was her reply: WELL PERHAPS SHE NEEDED IT MORE THAN ME THAT DAY"

(Note: that is just one example that even when she was battling her cancer and had an understandable 'get out of jail free' card to be selfish and focus solely on taking care of herself, she was still invested in the well being of others. Incredible)
"We have two ways of remembering people who leave us and start another journey. We either cry over their absence, or smile and remember them through the countless memories that have stayed back"

(Note: this is exactly what I'm trying to accomplish with this blog post...shifting from the former to the latter)

"Please look into publishing her blog. A woman as inspirational as Vashni needs to be read by everyone. Her writing is heart-warming, laugh -inducing and truly unique."

(Note: one other person had this same suggestion. Someone's going to have to clue me in on how to go about doing this. I agree her writing can be an inspiration to others going through what she dealt with

I don't know how to wrap this up so I will shamelessly steal from one of Vashni's earlier posts.  This is from her first post after the diagnosis of her cancer recurrence. Easier said than done but sounds like a plan.

"I am sure I will have plenty of moments when I will cry my eyes dry, but today. No tears. All business. Who knows what tomorrow will bring. But, we are doing this one day at a time, right?"

Tuesday, October 16, 2012

Cue the Guest Blogger

It's the Husband here filling the role of guest blogger.  Sorry to say that you're going from someone who, in my mind, is a very good writer to someone who is not.  But you're stuck with me for now.  And, I figured it was time to update folks on what's been happening since Vashni posted last.  Plus, I have a tendency to be, shall we say, frugal with updates and sharing information.  As Vashni said in one my favorite posts (from 12/20/11), "I am pretty sure that [the Husband] and I were married before any of his workmates even knew he was dating someone. Geesh. Share a little? Come on!"  So update time it is.

Anyway, last Vashni posted she was undergoing evaluation for consideration for another clinical trial at NIH.  She was ready to sign the enrollment papers but it kept getting put on hold for various reasons (again...see previous post).  Recognizing that each day's delay was one more day without treatment, she also consulted with her oncologist to see what he would recommend as the next course of treatment if she remained under his care and not do a clinical trial at NIH.  I'm guessing the options for fifth lines of treatment for her particular cancer are not as well-established -- he recommended treatment with two drugs, fluorouracil and Avastin.  Since these would be for off-label use, we needed preapproval from my insurance company.  Avastin is very expensive.  Fluorouracil is not.  I'll let you guess which one the insurance company approved and which one they denied.

So we faced a decision on whether to have her take the Avastin and hope our appeal was approved (or else find a way to come up with ~10K a month*) or start with just the fluorouracil.   Whatever we decided it was clear she needed to start *something* as her fatigue was increasing and she was becoming rather short of breath.  She was also getting significant edema in her legs which is a common side effect of her cancer.  But...she was going to start chemo again on Tuesday, Sep 18 and we were hoping that would help.  Turns out she didn't start chemo that day.  On the Monday before (Sep 17) her shortness of breath, fatigue, and general feeling of being unwell caused her to call her oncologist.  When she described her symptoms they immediately advised her to go to the ER.  So I left work and came home to take Vashni to the ER.

(* Our appeal decision arrived yesterday.  Denied.  According to the internets other large health insurers will approve Avastin as a second line of treatment for Vashni's type of cancer.  My employer does not offer me a choice on who my health insurer is and they won't approve Avastin as a fifth line of treatment even with some cited clinical studies that Avastin may benefit those with Vashni's type of cancer.)

While in the ER they took a chest x-ray and thought they saw a smudge on her lungs that could be pneumonia.  Or maybe a blood clot.  Who knows.  But given that she is a cancer patient and either of these conditions can be serious business, they suspected pneumonia and admitted her into the hospital so they can administer IV antibiotics.  They also ordered CT scans, an MRI, and an ultrasound to cover their asses, look for evidence to support a conclusion they made without data to confirm pneumonia and/or blood clots.  It took them a whole week for them to say she never had pneumonia or a blood clot but rather her symptoms were a possible result of fluid accumulation in her lungs impeding her breathing.  The same fluid causing edema in her legs.  My favorite part of the week was when they said they'd pick her up for her MRI on Wednesday morning and they showed up on Thursday evening.

While in the hospital her oncologist went ahead and prescribed her starting fluorouracil.  For whatever reason he prescribed it as 5 consecutive 24 hour IV infusions.  So Vashni was not released from the hospital until Sunday, Sep 30.  Ugh.  She came home to a hospital bed in the family room and oxygen concentrators/tanks per doctor's orders. 

I can honestly say that Vashni's strength and overall health were better the day she came home from the hospital compared to how she was shortly before being admitted.  However, her strength and overall health have since declined over the past couple of weeks.  At an alarmingly quick rate if you ask my opinion.  Last Monday while a friend was visiting she fell and hit her head.  Off to the ER we went again.  A CT scan of her head showed no issues so she went home.  But of the course the troubling question remained as to why she fell in the first place.

Last week she had a follow-up appointment with her oncologist and it was a struggle just to get her from the car to the clinic.  She had been scheduled for round 2 of fluorouracil to start today and her oncologist asked her if she wanted to continue with the treatment (hard not to read between the lines there).  He also suggested we consider hospice services (OK...even my clueless ass can read between those lines).

So here we are to today.  Vashni's strength and mental faculties have decreased dramatically over the past couple of days.  I don't really know what else to add.  Today she began in-home hospice visits. 

Please continue to pray for Vashni's physical and emotional well-being.  Also please continue to pray for Vashni's parents who have stayed with us for pretty much the past month providing all sorts of support and will continue to do so indefinitely.

Thanks to all who have provided me with words of encouragement, prayer, and support.  I'm too overwhelmed to respond to every single one but they've meant more to me than I can ever express.  And not just because I'm a lousy writer.

But most importantly thanks to all who have provided Vashni with words of encouragement, prayer, and support.  She's not able to use her iPhone right now but I have picked it up, sat next to her, and read to her all of your texts, facebook posts, emails, etc.  Please keep it up. 

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

Thursday, July 26, 2012

Inch by Inch

So...I am coming up on my birthday. My 39th birthday to be exact. I used to be a little bit sad about approaching 40, but that's kind of changed. You see...over the past 10 months,  there have been times when I wasn't sure I would make it to my 39th birthday. Even now, as I write this, I think my new-found understanding of the fragility of life keeps me from even being sure that I will make it through the next 5 days. Not that I am anticipating anything happening...but that's the thing about life and can't really anticipate what only God knows.

Anyway...I think if you asked me a year ago if I was looking forward to being 39, I would have groaned dramatically and made some comment about getting old. But, today if you asked me the same question, I'd have to say "hell yeah" because I want more than anything in the world to continue getting older, to be 40 and 45 and 50, etc. A year ago, I would have said that I didn't want to celebrate birthdays anymore...they are just another day...but know what...I want to not only celebrate my birthdays as I age, I want to celebrate everyday. Each day that I wake up still breathing is a gift. Cancer taught me that much. I am sure it has plenty more to teach me, since right doesn't seem to want to go anywhere.

That being said...many of you already know that I had my scan this past Monday to see if the chemotherapy drugs from the clinical trial were working. I felt confident that I could handle any result. Alas, the results were not good. The large tumor on my liver has grown another 1.2 cm. We are now up to 9.2 cm (don't try to look back and do the math because it doesn't make sense to me either. I guess the size depends on who is measuring it). In addition to that, there were a few spots that were being "watched" (unbeknownst to me) that have become measureable in size. Much of my pelvic masses have stayed the same size, with some of them growing a little. I am pretty sure he didn't mention anything shrinking. I am also pretty sure he didn't mention anything spreading. 

I wasn't really surprised. I had felt in my heart and body that this drug probably wasn't doing what I needed it to do, but I was still disappointed and sad. Sometimes, I feel scared. Monday was one of those times. 

However, my doctor reminded me that there are still other options and that I am still in relatively good health. He said..."I don't want you to think that I am sending you home saying 'there is nothing else we can do.'" Together, we put together a plan. My husband and I were to research a few things and the doctor would be researching some others. There's movement for now on what to do next. Which is a can't imagine how many people responded to my news with a "what now?" Yeah...what now?

Now we gather our resources and go back to the drawing board. Another battle lost, but the war is nowhere near over. I may be getting used to this process. I am recovering more quickly emotionally. Though I say that now and who knows what the next hour will bring. It's a rollercoaster for sure.

Anyway...strangely enough...I got an email with the following quote just a few minutes ago and it reminded of how I need to take life right now...inch by the present moment. Nothing big is accomplished in one leap. It takes time. I may not have as much time as I once thought. But, I have this moment to fill however I want. Baby steps. Inch by inch.

Watch your way then, as a cautious traveler; and don't be gazing at that mountain or river in the distance, and saying, "How shall I ever get over them?"

Just keep to the present little inch that is before you.

The mountain and the river can only be passed in the same way; and, when you come to them, you will come to the light and strength that belong to them.

Mary Ann Kelty, 1789-1873 (Adapted)English Author and Poet

Take care, my friends, inch by inch.

Love, Vashni

Friday, July 20, 2012

...And I'm Just Not Sure How to Feel About It

Sooo...I have a CT scan on Monday morning. I can't decide if I feel anxious or not. I don't seem to be anxious, but is it because I am not anxious or is it because I am floating along on some sort of denial cloud right now? Ha ha. And, either it going to hit me like a whip in a couple of days when it's really happening? 

Part of me thinks...well, maybe I have finally really gotten this whole "worry is useless" thing down. And then, I pause for a moment, and proceed to laugh my arse off. Seriously, I try...but that's just never going to fully happen. It's too far ingrained in my bloodline and my psyche. Not worry. Hahahahahahahahahahahahahahahahaha. Hahahahahahahahahahahahaha.

Hahahahahahahahahahaha. Sigh. 

And then I think....well, maybe I am just used to and getting comfortable with the disappointment. many times now have I heard "It's not working. We need to try something else"? Maybe I am numb to those words. But, nah. Perhaps there is some small truth to that, but overall...that's just completely counter-intuitive to my hopeful nature. It can't be that. Can it?

Perhaps...I just have a good feeling about this trial. be completely honest...I don't. I don't know if that is because I have "felt good" about things in the past and been wrong or if I really just genuinely don't feel good about this one. I don't know. I want to. But, it's not there for me.

Maybe I am just too exhausted with this process to think so much about it at this point. Although, if that were true, would I be typing this post right now? LOL. 

Anyway...I have a CT scan on Monday morning. And I really don't know how to feel about it. Happy healing thoughts are always appreciated. If the scan shows that the tumors are smaller, stable, or have grown within less than 20% of the total size at my initial scan prior to cycle 1 (although this actually sounds like a lot of growth to me at this point), then we will continue chemotherapy next week. Otherwise, it will be time again to search for something else. I will, at that point, have about 2 weeks to clear my system of this drug before starting another trial. Or, I think, if I wanted to go back and try something with my regular oncologist (and battle things out with the insurance company for coverage), I could start that sooner.

That's all for now, folks. On the "cancer" front, that is. Happy Friday and weekend. Be safe. Stay away from the news. And have a good one!

Love, Vashni

Wednesday, July 11, 2012

Tick, tock, tick, tock....

It's been a little more than 3 weeks since I last blogged. Ack! I suppose I have had a little bit of a blogging dry spell. A mental vacation, if you will. On blog hiatus. Something like that. Anyway, thanks to the friends who have checked in on me and made sure I was still alive and kicking (I am) and for those who said they missed me (I miss you too)!

So, what's been happening? Eh. Not really anything to write home about, hence the dry spell, I guess. The two weeks following my first week of chemo were pretty much consumed with step-parenthood.  This is not to say that I was "parenting" 24/7, because I wasn't, but somehow these 2 weeks got away from me. And quickly. Having a kid in the house will do that. I know this because most of my friends are parents and they disappear from time to time and I totally get it. 

I was all gungho about "finding the balance" between being a good stepmom and taking care of myself. How did I do? Fail. do all you mothers and fathers do it!? Mind you, my stepdaughter is in camp during the day, so it wasn't like I was busy all day with her. I was still just with myself. Undoubtedly, there was more laundry, more cleaning, more groceries to buy, more food to cook. But, still...why couldn't I find time to rest and heal? In the evenings, we did family stuff. I wasn't forced to. I wanted to. But, at the end of two weeks, I was pretty tired and I relented to do better the rest of the summer. She is back with her mom right now (for a total of 2 weeks) and will be with us for 6 weeks straight once she returns. I must learn to allow myself to rest and not feel guilty while she is here. I MUST! I think I worry that if I go rest, it will seem like I am isolating myself and that she won't feel loved by me. Sigh. It's hard being so sensitive. LOL.

Last week was the first week of cycle 2, which means that I was at NIH everyday for treatment. It was a rough week. I started off with some pain on Monday and due to the holiday week and the area-wide power  outages, NIH was operating on limited staff. My own protocol team wasn't there on Monday to write up my orders for the week of chemo! So, it was a slow and painful start. 

When I finally DID start the chemo on Monday, I ended up having an allergic reaction to it. What?! I know. I said the same thing. Apparently, my body is building up antibodies to the drugs in the IV. After about 5 minutes of infusing, I started to feel tightness in my chest, have difficulty breathing, and my face and lips felt tingly and like they were swelling. I wasn't sure if it was all in my head, but thankfully I decided to hit that call button on the remote that I usually only use for the TV volume. Ha. I slowly said "My face feels funny" and as I was saying it, I saw a nurse rushing toward me. Apparently, my face also LOOKED funny. She hurriedly stopped the infusion and hooked me up to some monitors as my own nurse came running to assist. All was fine within a few minutes, but they now have to give me some stronger benadryl, some added pre-meds and run my drip slower. 

So far...its been fine since the "incident" on Monday, but the extra pre-meds make for a very sleepy Vashni. Monday through Friday, my schedule looked something like this: Get up and go to NIH. Get treatment. Go home. Go to bed. Repeat. I was so wiped out that the week was a complete and total loss. I even slept DURING treatment. So, yeah...not much blogging can be done while I am unconscious and drooling.

By Friday, I was feeling really depressed. If this medicine is working, I will be thrilled. But, at the same time, being out of commission for one week (plus some) out of every three weeks kinda sorta sucks. Saturday through Monday, I was still feeling exhausted....kind of like....lethargic. And not just my body, which I would hoist around from bed to couch to hammock to chair, just being miserable, but my brain also felt lethargic. Like...deep thought took way too much energy. I found myself, often, sitting in our living room staring into space, listening to the clocks (we have many) tick tock the time away. Is this what it is like to be in the brain of a man when he is at rest? Interesting. Tick, tock, tick, tock, tick, tock, tick, tock....hear that? That's my life....passing by. 

Anyway, each day since Monday has brought a little more energy into my body and brain. I will probably be fully functional just in time to start this process over again. It's like Groundhog Day, but way less amusing. 

That being said...the deeper parts of my brain are slowly starting to awaken again, so hopefully I can produce some meaningful and humourous blogs in the very near future.  Until then, thanks for being patient with my man-brain! Love you all!!!


Saturday, June 16, 2012

Week One is Done...Fun Fun Fun

Howdy Y'all!

(I just realized that I am really getting used to my iPhone correcting the spelling of my words, which is making me lazy about typing some things correctly...for example...when I type "y'all" on my phone...I really just type "yall" and the iPhone adds the apostrophe. Ha.)

Anyway...I digress. Week one is done! Yay! I'd say it's been a rollercoaster, but it hasn't been too bad. For my HersheyPark friends, I would say it was more of a Trailblazer than a SkyRush. Monday, my bestie drove down from Pennsylvania and took me to my first chemotherapy session. She always makes things easier because she is the queen of distraction for me. She makes me laugh constantly and she provides comfort in a way no one else can. I guess she is the right blend of comic relief and serious caregiving for me and she knows how to make it all about me when I need it to be but in this natural unforced way...even when I am not all that gracious at the time. God, I love that girl! Guess that is what happens when you have been friends for 35 or 36 years (what are we up to now?). She also brings trashy magazines with her so we can dish on other people. 

So, Monday wasn't too bad with the help of a friend. I was still in a fair amount of pain and probably not the most pleasant person. I got my port all hooked up and they set me up in a comfy recliner chair, with a warm (as in they heated it up) blanket and a TV with probably about 80 channels (suh-weet). It took my bestie and I about 45 minutes to figure out how to turn it on and change the channels, but whatever...we got it going. 

Each day, they start off by giving me a benadryl and a zantac. This is to counteract the possibility of an allergic reaction and uh...heartburn, I guess, from the chemo drugs. I think it is to help with the effects of whatever it is they mix my ixebepilone with rather than the actual ixebepilone. After giving me the pills, I have to wait an hour for the full effect of these drugs to set in before they will give me my infusion. On Monday, the benadryl really affected me. Man, was I dopey and sleepy (at least 2 of the 7 dwarfs). Thank God for my recliner chair and blankie. Too bad for a very talkative nurse. Even my bestie, who is well-known for her ability to talk circles around anyone, was trying to quiet the nurse so I would sleep. I looked pathetic.

During my time there each day, I am able to order food free of charge. As much or as little as I want. We were kind of reluctant and scared, but I ended up ordering enough food on Monday for both myself and my bestie to eat lunch. Nice. The head nurse from my protocol team advised me to do this, but we still felt uncomfortable. Ha.

Tuesday was my rough day. I was really in a lot of pain and in addition to my normal pain, which is in my lower back, hips, and pelvic/abdominal area, I was having pain around my liver. The pain I was having around my liver was the same type of pain I had during and after my liver biopsies...only now I hadn't had anything traumatic happen to my liver, so I was FREAKED out, to say the least. The protocol team sent up one of their doctors to talk with me. I, tearfully, told him about my pain and my fears and he calmly explained to me that I have plenty of healthy liver in my body. He told me that where my tumor is, it may press against the membrane that surrounds the liver and that it is in a very sensitive spot. Otherwise it is a good spot because it is nowhere near any ducts and such and so it won't affect the functions of the liver by blocking an important duct, such as the bile duct. His thought was that it might be inflammed from the chemo hitting those cancer cells. I am not sure about that since it hurt a little before I started chemo on Monday, but we shall see.

They also sent a doctor from the pain management and palliative care department at NIH, who assessed all my pain and made some new recommendations. Everyone at NIH is so nice! Anyway, the biggest change he made was to add a drug called gabapentin for me to take at nighttime. Apparently, the pain I complain about in my abdomen and lower back sounds like nerve pain by the way I describe it. This drug is meant to calm down the nerves and thus reduce my pain...and you know works! Yesssss.

Soooo...I added this to my drug arsenal and by the very next morning, I was feeling great. Honestly, I don't know if it is the pain medicine that is working or the chemotherapy or all the prayers, but either way I am feeling much better. I am able to do a lot more and I feel pretty much like a normal human being again. I am pretty sure if it weren't for the port hanging out of my chest, you wouldn't know that I was sick. I even picked up a new hobby! It took me at least 3 weeks to do what most people probably do in one day, but look...I made this:

Anyway...Wednesday-Friday was uneventful. I have the routine down. I learned that some chairs on the ward are actually equipped with a heater and a massager and I have been asking for them daily. I love the chairs and I really don't want to leave when I am done infusing. I find myself telling the nurse..."take your time". Ha ha. My husband came with me on Friday, which was nice, even though he somehow convinced me to put soccer on the TV. Sigh. But, seriously, it was nice to have him by my side experiencing this along with me. He's a good egg. Today, I have to give myself the neulasta injection. I have had neulasta before (this is meant to boost my white blood cells) and I have given myself an injection before, but never these 2 together. I am a little nervous because neulasta is "thick" so you have to push it in slow or it really hurts, but let's hope this goes well. 

As I speak (or as I type), my husband is picking up my stepdaughter who will be living with us for most of the summer. I can feel myself switching into mothering mode and I am trying NOT to go full  tilt into that mode. Mothering is all about taking care of everyone else and I want to be sure I am still taking care of myself as well. It's not an easy balance, but I look forward to the challenge!

So, now I have 2 weeks "off" from infusions, even though I will be at NIH 3 out of 5 days next week. This will give my body a chance to process all the big bad cancer-killing stuff so that I am ready for round 2. I am hoping to continue tolerating this well and really hoping that it is working!

Thank you all again for all the praying and sending of positive healing thoughts. If nothing else, I FEEL much better, so I am extremely grateful for that! Mwah!!

Love, Vashni

Friday, June 8, 2012

Tenacious V

Last night, I went to my support group. I hadn't been going and apparently I needed to because I opened up some internal floodgates on my poor group. Boo hoo-ing. Sigh. It was kind of...cathartic. I feel better today.

During the meeting, the word "tenacity" kept coming up. Like the "word of the night". I'd been worried about not being optimistic enough, not being positive enough, not having enough hope and thinking that having negative, pessimistic feelings (even in very short passing intervals) would somehow prove to be a self-fulfilling prophecy and render me...well...a goner. I was reminded by the group that this is called "magical thinking". That just because I think I will be ok, doesn't mean I will be and just because I think this disease could kill me, doesn't mean it will. While I do believe whole-heartedly in the mind-body connection and I think that practicing positive visualizations and meditations can only benefit me, I have to remember that I can't really just cure myself by wishing hard enough and thinking only positive thoughts all the time. Likewise, a negative thought here and there isn't going to suddenly bring the anvil down on my life. 

What one member said to me...was don't have to be positive all the time, but you do have to be TENACIOUS. I decided to look this word up today...just to be sure. If I am going to be tenacious, I want to make sure that I doing it right! 
 1. Not readily letting go of, giving up, or separated from an object that one holds, a position, or a principle: "a tenacious grip".
2. Not easily dispelled or discouraged; persisting in existence or in a course of action: "a tenacious legend".
Some synonyms of tenacious: stubborn, obstinate, resolute, persistent, insistent, dogged, and determined.

Yes, yes and yes. I want to be all of those things. I am not giving up. I am not letting go of hope. I will stubbornly, doggedly, determinedly hold a tenacious grip on my life.

So, I picked a trial. Not everyone agrees with me, but I followed my heart. I made the decision for myself despite the naysayers, which is actually a pretty big deal, in and of itself, for me. Go me, Tenacious V!!

Next week, I will start the Ixempra (ixabepilone) trial. There are a number of reasons that I decided to try this one first, but I will spare you my rationalizations. Starting Monday, June 11th, I will be getting 5 days of infusions of ixabepilone. This drug is FDA-approved as a 2nd-line therapy for breast cancer, which means if the first drug used on a breast cancer patient doesn't work, then this is the next drug the doctor would try. This drug is similar to the drug Taxol, and has been found to work on patients who didn't respond well to Taxol (me). This is a Phase II study, which means that they have already tested it on a small group of people to determine a safe dosage level. Now they are testing it on a larger group of patients with cervical cancer to further evaluate its safety and effectiveness. 

From the Phase I and Phase II studies up to this point, they have found that 15% of patients have experienced tumor shrinkage. Not a huge number, but it's worth a shot. I am hoping to fall into that 15% range. This is a "safe" choice for me. It is similar to what I have already experienced and it will spare me major bodily trauma. My first follow-up scan will be 6 weeks in and if we find at that time that it isn't working, I will move onto the next trial. 

I did have a baseline CT scan this past Wednesday and while my pelvic mass(es) have remained the same size, my liver tumor has grown another centimeter. It is now up to 7cm. I have to keep reminding myself that it is centimeters and not inches. Kind of a big difference. Still, it's getting pretty big as far as liver tumors are concerned and I am not happy about that at all. I am starting to think I need to name that sucker so I know who I am working on killing. 

Anyway...having recently witnessed the power of pray in a friend's life, I would like to ask for prayers, prayers and more prayers...especially next week during the times the medicine is gushing into my body and heading for those cancer cells. I don't have my full schedule for the week yet, but I would especially appreciate prayers between noon and 3pm on Monday...I will be infused at some point during that time. If you aren't a praying person, but do believe in sending healing thoughts or energy or positive vibes, please do so. Light a candle, have a prayer circle, lift me up. (Gosh, I know this sounds so selfish...but I am just trying to rally the troops!) I know I am already on a lot of prayer lists at a lot of churches, and I super appreciate that. If I am not on your church's prayer list, please consider adding my name. You hereby have my permission. Besides being tenacious, I want to rally God's, the Universe's, the Divine's help in healing. Please pray with tenacity! I promise to return the favor to you whenever you need it!

Love to you all, Vashni 
(aka Tenacious V (ha!))

Tuesday, May 22, 2012

I'm Amazing, You're Amazing, She's Amazing, We're All Amazing

Hello Blogosphere,

It's me again. It's been awhile, so I wanted to check in and say "hi" and give an update. HI!!

I am trying to remember all that has happened since my last post. Seems like not much, but at the same time a lot. If that makes any sense. I also wanted to clear something up.

I get a lot of "you are amazing" and "you are an inspiration", etc. And, don't get me wrong...I love it. I'm not gonna lie. Ha ha. You can keep saying those things to me all you want! LOL. But, at the same time, I need you to know that I honestly don't think I am doing anything that any one of you wouldn't do in the same situation. I am pretty sure that anyone who has ever been diagnosed with cancer has been devastated at the news. "Cancer (even though it no longer needs to be) is often synonymous with "death". So, when a doctor says "you have cancer", I think it's pretty common that your first thought may be "I'm dying". And not just "I'm dying", but "I am going to die a long slow and painful death". Good times. But, even though those thoughts and feelings may stick around for awhile  or come and some point, some other part of you steps forward. It may be a part of you that you didn't realize you had, but it's something we all have inside of us and it's driven by our innate "will to live". That intangible feeling of HOPE. The will to survive. The will to stay strong. The will to keep moving. As I see it (and I think most will agree), when we are faced in life with ANY kind of setback, obstacle or battle...we have two choices. We can choose to stay in that state of devastation, stay miserable, and have zero quality of life until we succumb to the illness. Or, we can choose to call upon that internal fire, that deep down in our soul fervor for life, as well as our support system and our faith (whatever that may be) and fight to make the best of the situation. What's that saying..."Would you rather die while you're living or live while you're dying?" I know what I choose. And every cancer patient/survivor that I have met on this journey, thus far, has made the same choice. I am confident that you would too. Even  if you think you wouldn't do it for yourself, you would do it for the people who love you.

And...while I am  blabbing away about amazingness...I personally think that anyone who is a parent is amazing. Anyone who chooses a career in teaching...amazing. Anyone who has been through a divorce and survived it...amazing. And, anyone who has had to sit by and watch a loved one pass on from a long illness with cancer or any other disease...super amazing. In a way, I think things can be much harder for those that are loving and caring for a person battling illness, than for the actual person battling. I just think that having cancer (and sharing it publicly) really kind of puts you on blast in a big way and more people see your strength than in other circumstances. 

And, just to set the record straight...and I think I have said it before...but I am NOT always positive. I try to be and I try to only share that side of me with all of you, but I do cry. I do get scared. I do feel sad and sorry for myself. I think it is important for me to feel these things. But, I choose not to stay in those places. I feel  them, acknowledge them...TRY not to beat myself up for indulging in them...and then I move on and get to living. It's really what anyone would do in a crisis...just keep moving. So, when people say to me "I don't know how you do it..." Well, I kinda don't know either...but when you have no real just do it. Trust me.

Anyway...I would like to and do hope to be a positive role model for those facing anything big and devastating and difficult in life...but please know that I also gain my inspiration from all  the love and support I get everyday from my family and friends and even, sometimes, strangers. 

So...quick update since I blabbed on so much above. Ha. I went back to the NIH on Monday of this week to consult with a different doctor/team about the other chemotherapy trial (the dasatinib and bevacizumab trial that I mentioned in my Novel about NIH). So, right now I am trying to decide between this study and the other chemotherapy trial. I have listed pros and cons of both and they run pretty equal in that regard (though for different reasons). Tough choice. I do have to have a "wash out" period, during which I must stop taking any chemotherapy drugs...including the tamoxifen pill that I take right now...for 4 weeks. I stopped it today. So, I couldn't technically start either trial for another month, but I would like to make my decision pretty soon and get that ball rolling. I can also choose one of the two trials now and if it doesn't show any benefit after the first 2 months or so, wait another 4 weeks and try the other trial. So, I guess it's really just a matter of which to try first.

The best part of my visit to NIH yesterday was when the attending physician reviewing my case explained to me that...while I have tried 3 (tecnically 4) lines of chemotherapy with no luck and I have a medium-sized liver tumor...most of the patients in the study have tried 6 or 7 lines of chemotherapy with no luck and have larger, more difficult to treat tumors. I said to her " mean...compared to some, I am really not that bad off?!" Nope! It's never good to have a cancerous liver tumor, but I am faring much better than many and I need to keep being reminded of that. Not that I wish for others to be sicker than me, but it's nice to have that reminder that I am still doing pretty well and should not even be close to giving up hope at this point. Phew! I will do what I do and keep on moving!! Y'all should keep remembering to do the same.

Love, Vashni

Tuesday, May 8, 2012

Yesterday Was Kind of a Bitch to Me

Yesterday, I went back to the NIH for an MRI and a PET scan. The goal of these tests was to determine if surgery or some other intervention to treat my liver alone (and then deal with the cancerous spots in mah belly separately) was even plausible. 

It was another early morning DC commute for me, but surprisingly traffic was mega-smooth and I arrived pretty early to the 12th Floor Clinic. It's only taken me 2 prior visits to get the system/parking garage/building 10 navigation down. I am already a pro!

At the clinic, I got my port accessed, blood drawn for a blood glucose test (for the PET scan), and was sent on my merry way back to the radiology section of the hosptial for my MRI. When I arrived, I was advised I was too early to even sign in. Hmph. I took a seat and watched my already waning mood spiral down even more. You see...a) I was in pain. (Based on my CT scans, the pain I am having seems to be coming from two spots in my pelvis that are not cancerous. They are called lymphoceles or lymphatic cysts. I have one on the left and one on the right and they are most likely the result of lymphatic fluid collecting in the space where I used to have lymph nodes before they were removed during my surgery in 2008). It's a relief to know that the pain is something benign, but's pain and being in pain is simply exhausting. AND b) I really really dislike MRIs. The laying still, the confinement, the banging noises. Ugh. (I feel myself panicking just thinking about it now!) But, this was free, necessary for additional diagnostic information, and compared to so many other things I have put my body through in the last year or so...really easy physically. It's just a mental bitch.

So...I took some drugs. Extra oxycodone and a clonipin (you can get anything from the pharmacy when you have cancer). My goal was to put myself in a coma for the MRI so that I would just sleep and not lay there panicking. How did I do? Umm....big FAIL. Apparently, I didn't jump on this strategy quick enough.

I was eventually taken back to the MRI room by the poor nurse/technician that had to deal with me for the next 30-60 minutes. I was very uncomfortable laying flat on my back, so she boosted my knees up with a pillow...and then another. I still whined. For anyone who knows me...I ALWAYS try to be pleasant and people-pleasing and apologetic. But, I AM getting better at being a pain in the ass. Not great. But, better. She did all she could to make me comfortable and told me she would be quick and then she slid the bed into the MRI tube where all the mental fun began. To be fair, the scanner at NIH is actually much more open than scanners I have been in in the past. But, it would still be a struggle to wriggle myself out of there in an emergency (and there goes the panic again). The next 30 minutes consisted of me praying for calm and telling myself it was fine. This is easy. Blah blah blah. At one point, I realized that my propped up feet were completely asleep and this made me panic even more. My heart was racing. I started sweating. My mind was all the way out of control. I hit the panic button. I readjusted my feet. I said in my feeblest, most pathetic voice, "Are we almost done?" To my relief, she explained that I had 7 minutes left, though we would  have to start the last scan over since I interrupted it with my panic. After that, she talked me through the last 7 minutes, which really helped. I had thought about asking her to do that from the beginning, but I think she was just trying to get through everything as fast as possible for me. 

So...the MRI was over (hallelujah!) and THEN my clonipin started to set in. Poor timing. Now, I was through the hardest part of my morning, but I was a complete walking zombie. I headed back up the 12th Floor clinic and found a place to sit while I waited to hopefully check in with the doctor. I still wasn't allowed to eat or drink because of  the upcoming PET scan, so I focused on staying awake while completely hunched over in my chair to reduce my lovely pelvic pain. I am sure I looked like a hot pathetic mess. A volunteer, named Jan (I think), came to sit with me and asked if I was up for talking. I am not sure I even answered her, but I suppose the fact that I looked at her meant that I was. I really wasn't. She explained that she had been a cancer patient there 22 years ago and her life was saved by NIH, so she came back each week to visit with patients and help calm them during their wait. She was so sweet and I was so not feeling sweet. I smiled and nodded, but barely spoke. I wasn't sure if I should hug her or push her down onto the ground and kick her. Ha. Just kidding...I would never do that. But, at the time, the thought may have crossed my mind. Ultimately, I didn't have the energy for either.

Time passed and I needed to go to the PET scan waiting room. This was the absolute BEST part of the day. Once there, I was taken into a small exam room with a recliner chair. A nice nurse or technician or whatever he was, loaded me up with my radioactive glucose, gave me a pillow and a blanket, reclined me, turned off the lights and told me to sleep. Umm...OKAY!!! Sweet sweet sleep. I followed instruction, without complaint.

Eventually, I was awakened and taken to the PET scan room. This scanner is similar to a CT scan. Much more open. The scan took about 20 minutes and all I had to do was lay there and stare into space. Good times. I was still in pain, but minus the mental anguish of the MRI, it was more tolerable.

Finally, after a quick lunch break, I was able to see the doctor. Here's the not-so-good news: Based on the results of the PET scan, the areas of cancer in my pelvis and in my retroperitoneal lymph space are widespread enough that it really wouldn't make sense to treat my liver alone. I suppose, if I really wanted to, I could find a doctor who would do it, but it's been the opinion of all of these really good oncologists that the risk of liver surgery (which is no walk in the park) would be too great compared to the benefits, unless the rest of the cancer in my body was under a bit better control. This is not to say that this couldn't be a possibility down the road, if we can find a way to shrink everything down, but I am thinking it may be an unlikely scenario. Time will tell. 

Anyway...I was pretty devastated at this news. I guess my body is, in a way, helping to make the decision of what to do next. So, right the NIH 2 options are for chemotherapy. (I am not yet eligible for the immunotherapy study, but will continue to work on getting there). What hit me hardest was when the doctor said "I think we have looked into everything we possibly could for you," which to me sounded more like "there is nothing more we can do". Which isn't true, but it is how I felt at that moment. I cried the whole way home.

I cried some more that afternoon and then even more that night. This afternoon, I feel much better. My spirit somewhat renewed. My pain is better today too...after an extended morning nap. Ha. Time to once again re-evaluate and move forward.

My mother-in-law sent an email last night. And,  while I receive lots of emails and cards and words of encouragement that touch me and speak to me all the time, what her email said last night spoke to me the right words at the right time. She said that, while practicing her daily devotional, she read the following:  "Maybe we need to be reminded that some things take time-God's time. In our microwave world, we want everything done instantaneously. But sometimes that's not God's plan. Let's seek God's help and learn to accept His timing." I want things to be fixed and better NOW and sometimes I worry that I am running out of time. But, I don't know that. No one does. All we know for sure is that we have THIS moment. And THIS one and THIS one. Ha ha. 

One more little tidbit to share: This came from a former colleague, who posted this on The Facebook this morning. I hope she doesn't mind me sharing! 
Riddle for today: What one activity is almost as natural as breathing...yet is useless, harmful, a waste of time--and warned against in the Bible?
 The answer: which I got immediately....yay WORRY. (remember my "Worry post")
Her response to me: "You're right, Vashni! I've been listening to a message by one of my favorite ministers: Adrian Rogers on "Words for the Worrier." He noted that there are 2 things we should never worry about: 1) things we can do something about--because then we should act!--and 2) things we can't do anything about--for that very reason.
So...anyway...all this being said...yesterday was kind of a bitch to me, but yesterday is over.  Who knows what tomorrow will bring. It's best for us all to just remain right here, right now and relish all the beauty of each passing moment as it comes. There is no need to rush through today to get to tomorrow because all we really need is upon us now.

Love and hugs to you all!! Check your worry at the door and live in the present!