Quick Lil Update

Quick little update: (Yeah right...I never seem to make my blogs quick).

Anyway! My liver pain has resolved. Yay! But, the lower back/pelvic pain remains the same (or maybe even a tad bit worse). Boo! It's been difficult to keep a positive mindset when I am in pain and I finally stopped fighting the narcotics and jumped in. I am now on a fentanyl patch with the vicodin or percoset for breakthrough pain. And plenty of laxatives to keep things moving. If ya know what I mean. Oh and prunes. Loving me some prunes right now. I've been feeling a lot more comfortable the last few days and even though my energy is still kinda low, my attitude is much much improved. And, we all know what a positive difference a good attitude makes in any kind of journey! Especially in this kind of journey.

To add to that...Monday, we received the results of the "targeted study". The results were...encouraging. It's all a little bit over my head, but in essence, there are about 10 drugs that showed "clinical benefit" for me. One of these is a medicine similar to the cocktail I am on now. I am unclear how similar they are, but am encouraged nonetheless. Especially because there are options! The report also indicated about 5 drugs that showed "no clinical benefit" for me. THREE of these I have already tried. 

Does this mean, as my mother asked me, that we have been "spinning our wheels for the past 6 months"? Eh. As I see it...yes and no. Apparently, there is something in the medical world known as "standard protocol". And that is what we followed here in my conventional treatment. For my type of cancer, first we try this, then we try this, and 3rd we try this. While the first 2 showed no real benefit to me, my cancer hasn't progressed significantly. That's a positive to me and I can't really sit and question the what-if's because that would just be a waste of my time and energy.

Instead of waiting the usual 3 cycles (21 days each) to re-scan my belly, we are doing it at the end of this 2nd cycle. So, I have a CT scan scheduled for the end of next week. This will hopefully indicate if the stuff I am taking now is really working and address the new/additional pain I am having (I can't rule out the fact that the pain may be caused because the chemo is working). This way...if it's not working, we can jump on one of these 10 other drugs sooner than later and crack down on these cancer bitches. Fwap! (Sound of whip. Ha.)

So...yeah...I got a nice dose of HOPE this week and I was really needing it. By the way, I love hearing that y'all are still praying for me. It means SOO much to me. Also...your emails, FB posts, cards and texts abolutely make a huge difference to me. I always seem to get one when I need a boost.  Y'all are the best! Thank you for reminding me that I am never alone.

Love to you, Vashni

For Steph...

Today marks the 3rd anniversary of the day I lost a dear friend, Stephanie Leonards Roman, to cancer. To say that I think about Steph everyday would be an understatement...as I think about her many times every day. Especially now. I never in a gajillion years thought I would be facing the same battle for life as she did just 3 years ago.

When Steph was battling cancer, I didn't talk to her much. I didn't visit. I sent an occasional silly gift or card or email. I still have a card that I failed to send her before she passed. I can't bring myself to get rid of it or send it to someone else. I regret not talking to her more and I hope she knows/knew how much I thought of her then. I know she knows how much I think of her now because I feel her around me. She is somehow with me on this journey. 

Battling cancer, especially a stage IV cancer, can be a very solitary experience. It's not something you can really grasp or comprehend until you are smack dab in the middle of it (which I sincerely hope none of my loved ones ever are). I often wonder if she had the same fears as I. The same questions. The same doubts. In the times that I did interact with her, she was incredibly courageous and brave and FUNNY. I was diagnosed with my first cancer while she was still around and I always referred to her and considered her to be my "cancer role model". I have said it before and I will say it again...I sincerely do not think I would have handled my own diagnoses and subsequent battle nearly as well as I have if it weren't for her positive example.

At any rate, I really didn't want this to be a sad blog. Rather a tribute to Steph, a reminder of how precious life really is, a celebration of the life of that comical and confident blondie that entered my life in....uh...1992? Wow 20 years ago?!

I used to keep another blog called Vashni's 34x365. I started it on my 34th birthday in 2007. An attempt to write "34 words for every year of my life about 365 people who have helped shape who I am today. One person each day for a year." I petered out at #83. Around the time I started dating my now-husband and got preoccupied with love and such. But, I looked back this morning and there she was. Number 56. November 6, 2007. 

Stepha-NIE! From Lyle Hall to Brookwood Court, the tundra to the Keys, we created so many silly memories. Tommy Boy. Back scratchers. That infamous late night trek to Landis. "Rectum? Damn near killed him!"

I suppose that most of this means absolutely nothing to most of you, but Steph would get it. And just thinking of these moments from our shared past makes me laugh out loud and smile. Boy oh boy...did Steph love telling that Landis story. I'd give my right kidney to hear her tell it again.

 

 *sidenote: I actually thought about the above "rectum" quote (which I believe actually originated from someone else in the Leonards clan) during my Near-Death Straining Incident.

Anyway...Steph and I had our ups and downs, as many friendships do, and even though I know she is somehow still around, I miss her. I miss her story-telling. The way she loved to brag about her wonderful family.  Her corny (seriously corny) jokes. Her love of all things bird-related.  Her gift and passion for teaching and for being a Mom. Her vibrant smile and that laugh. She knew how to laugh without abandon.

 “The first time her laughter unfurled its wings in the wind, we knew that the world would never be the same” ― Brian Andreas

Miss you, Stepha-NIE!! Today and always.


Love, Vashni

Traumatized

When my husband asked me if I was going to blog about what I am about to blog about...I said "No way"! So, I can't believe I am about to blog about...uh...what I am about to blog about, but whatever. We're all friends here. Someone has got to talk about this stuff. Right? I already opened up about many intimate details of my life by the very act of keeping this blog, so what the heck...why not!? (She says with a little reservation...will I come to regret this later?)

Now that I have completely piqued your interest (I hope I don't disappoint you). Ha.

So...last I posted, I was going to be working to stay on a narcotic schedule. I did. For like 2 1/2 days. I was totally gung-ho about this too (despite some of your warnings to step away from the narcotics)...it's the way I like to get behind a new plan if I think it's going to make my life better. I started off right away with the highest dosage and the shortest increments of time. And, I did feel better. No pain. Strange happy loopy feeling. Good times.  Why did I wait so long?

Oh yeah. Cause...as I was taking these happy loopy pills...I could literally feel them sucking all the fluids out of my body. I was drinking tons of water. Taking laxatives. But, within 24 hours of starting the new "regimen" I was in the middle of an all out intestinal crisis. Blockage. Major bowel congestion. A traffic accident in my lower abdomen. 

I have always been one of those people who visits the loo multiple times a day. I like to keep things...um...moving. So, even one day of...err...blockage, is like having my foot stuck on the track when a train is coming. I was miserable. Desperate. In pain. MORE pain. Damn you, percoset. All I wanted to do was poo.

I continued the laxatives, but stopped the narcotics. On Saturday morning, my husband left the house for about an hour. I decide that during this time, I will "try" to go. (Nothing good ever happens when I am home alone on a weekend). So ANYWAY, while he is gone, I have what I am now referring to as the "Near-Death Straining Incident".

I tried. And, by tried, I mean I was in full-out labor trying to birth a 16-pound baby turd. I could feel it crowning, but it wasn't about to leave the confines of my warm cozy colon. Then. It started. I started to feel very nauseous. I started to sweat profusely. And, I started to feel faint. I, for sure, thought I was dying. And because I didn't want my husband to find me dead on the toilet with my pants around my ankles, I did what any young wife would do. I somehow managed to get up, flush, get my pants up, grab my glass of water and my iphone (priorities here, people), and stumble to my bed. Where I continued to lay in a state of near unconsciousness praying...literally BEGGING...to God "Please not now. Please, I am not ready to go." I legit thought I was a goner.

Obviously, I didn't die. I, in fact, lived to tell this gruesome story. 

*Side note: while I was still laying in bed recovering from my Near-Death Straining Incident, I could hear my husband come home. I could hear him go to the kitchen and get himself something to eat and drink. Then I could hear him sit down on the recliner and turn on the TV. All I could think was....how many hours would it take him to discover my body if I hadn't survived my Near-Death Straining Incident?? Sheesh. Men. 

Anyway...since The Incident, I have been in a fair amount of additional pain from the trauma I seemed to have caused my intestinal tract. Still pretty miserable. Difficulty getting comfortable enough to sleep. When my husband noticed me doing weird calisthenics in the bed (and momentarily on the floor) at 6 am this morning, he asked "How long have you been doing this?"...My response: "Oh...only a couple of hours. Why? Do you think this is weird?" Ha. 

Anyway...at the doc today they prescribed to me, what my nurse practitioner referred to as a "super laxative". I took it at noon and now I wait. I am hoping for a religious experience (though not a near-death one). As I was leaving the office, after my treatment today, my nurse practitioner said..."hopefully, that'll get you moving". Oh please. I hope so!

Ah...the trials and tribulations. Sigh.

Thanks for letting me share. May you all have a beautiful bowel movement in my honor today.

Hugs, Hair, and Hurts

I got a hug from one of the nurses today in celebration of The Return of My Hair. People who have seen me bald tend to get very excited when they see me now. To me, who sees myself in the mirror everyday, it's not changing or growing fast enough. But, it IS growing and that is pretty rad. 

I could tell based on our conversation (this nurse just takes my blood and checks my vitals, but doesn't really know anything about my "case"), that she thought that The Return of My Hair meant that I was done with treatment and all better and healthy. Oh how I wish that were the case. 

Anyway...I have learned over the past few months, that most people, who haven't seen me in awhile but know I am battling cancer, don't know what to expect when they do see me. From these encounters I have learned that many expect that I will "look the part" of a cancer patient. That I will be sickly pale and sickly skinny. Some even picture me in a hospital bed, hooked up to tubes and beeping machines. This is far from the truth. With the exception of being bald (well, now just butch lesbian buzzcut (not that there is anything wrong with that)), I still look pretty much like...uh....Vashni. Post-prednisone fluffy Vashni. I am actually quite plump (much to my dismay) and my cheeks are round and rosy as ever. 

I am told that oncologists are the one type of doctor that are happy when their patients don't lose weight and that a well-nourished cancer patient has better odds of surviving...so even though I cringe each time I step on the scale at the doctor's office, I suppose that I should also be silently celebrating that my weight remains at a steady and hefty number. Likewise, I have been told by friends and family members that they secretly celebrate that my weight isn't decreasing at all. :o)

One thing that you can't really see when you look at me is that I am in pain. A lot. Like all the time right now. It is frustrating and defeating and all around a big stinkin' suckfest. And when I am in pain...my positive hopeful mindset spirals pretty low. Swings hella far in the other direction, in fact. Like, morbid self-deafeating thoughts at 3am and intermittent cry fests and old people noises coming fromst my lips. Not pretty. 

Some of my pain is residual from the liver biopsy. I have thought bad evil thoughts about this doctor for the past week. I realized, in addition to causing me all this pain and trauma, his bedside manner and general demeanor started my negative spiral of this past seven days. His attitude seemed to be "you have stage IV cancer...what hope do you have of making it" and "just be quiet and let me carelessly stab your liver cause you're gonna die anyway." Obviously, he wasn't saying these things...but this is the mindset that I left that hospital with and I have been shaking it ever since.

I have drugs. Cause one thing I have also learned in the past few months is that when you are a cancer patient, you can pretty much get your pale skinny hands on any kind of pill you want (I even had an offer from a fellow cancer patient who wanted to hook me up with some weed). But, I am reluctant to take all these drugs. Narcotics especially. The last thing I need on top of cancer is an even more toxic liver and a drug addiction. And, I was also thinking (in my altered pain-induced mindset introduced during the above-mentioned liver biopsy) that they think I won't make it either and they just want me to take these drugs so I can be comfortable until I die. Sigh. Yeah...I am revealing some pretty dark and disturbing notions that have been circulating my brain.

Anyway...it turns out that in my reluctance to suppress my pain with pretty white narcotic pills, I was doing the narcotic thing all wrong. I would take one here or there, but it never really touched the pain. I am now on a "schedule". It has to build up in my system and then I need to stay on top of it before it comes back. Already, its working. Who knew?! 

I also saw my therapist today. She made me realize that instead of focusing on and repeating the phrase "I don't want to die", I should really be trying to focus on and repeat the phrase "I want to live". Which is true, peeps! I WANT TO LIVE. I SHALL live. My time is so not up yet and I will not let some stupid liver-poking surgeon make me think or feel otherwise. So, yeah...it's a simple shift but a big one and I am gonna go lay down in my narcotic coma and repeat to myself....I want to live.....I shall live....

Peace. Love, Vashni

Second Verse...Same as the First

So...as many of you gathered from The Facebook, I had my second liver biopsy yesterday. This was technically something that I elected to do in order to find better treatments for my cancer. (Quick recap: they will send my gooshy liver tissue (I got to look at it...yum) off to a company who does targeted treatment studies of my tumors and my blood (I think) to find a customized treatment plan for moi). 

Beforehand, I was "pretty" gungho about doing this. My usual..."I'll try anything that could help" approach. However, as the procedure time got closer and closer, my apprehension and anxiety increased. My first liver biopsy was no walk in the park and I really couldn't believe I was going to put my poor little liver through this again.

Originally scheduled for 1pm, they had my parents and I arrive at the hospital at noon. I already knew prior to arrival that the procedure time had been moved back by one hour to 2pm. But, they like you there 2 hours prior to the procedure so that they can torture you and make you miserable. Seriously, I don't know what they need 2 hours for.

Well, it turns out that they needed more than 2 hours for me. We spent the first 45 minutes in the regular waiting room. When I asked how far behind they were, they didn't have an answer, but they moved my parents and I to another empty waiting area. Ha ha. Our own little space. After about another hour, I asked "My procedure isn't going to be at 2pm, is it?"...to which they had no answer, but they brought me a bed, a gown and a blanket and set me up in that within our "private waiting area". Interesting customer service policy, no?

Not long after that, they moved me to my official pre/post-surgery "bay". This was more exciting for me because there were nurses and doctors and other patients, etc. to keep me entertained. I was here for another THREE hours before they started my procedure.

During this time, my parents left to have lunch and I got hooked up to an IV of....nothing. My vitals were checked. My urine tested. My blood sent for counting. I met with the doctor. I met my nurses. I met the orderlies. I stared into space. I eavesdropped on other patients. I whined and  complained to anyone who would listen about how hungry and thirsty I was. I sat and I waited. I answered my medical history questions. I played with my iPhone. Dear Lord!

It turns out that I needed platelets. They weren't transfusion low, but they were liver biopsy (aka we don't want you to bleed to death while we stab your vital organs) low. We waited some more. At some point during this wait, my parents came back one at a time. When my dad came back he said "Well, you look no worse for the wear." How shocked was he when I explained that I still hadn't gone anywhere! Ha ha.

The doctor came back...there was an issue. The platelets they had were RH positive and I am RH negative. This was not a big deal if I was 100% sure that I never want to have babies. But, let's face it...I am a woman. I change my mind 2-3 times a day. I could try the biopsy without platelets...risky but doable. I could get the RH positive platelets and possibly have a reaction that would possibly cause me to miscarry an RH negative baby down the road. I could wait for an order of RH negative platelets to arrive from another facility which would be several hours. Umm no.

Who knew getting a liver biopsy had to be so complicated? Anyway...after some thought, I decided to do what was best for me in the moment and let the rest of the cards fall where they may. I got the platelets. Of course...then we had to wait for the platelets to be delivered from across the hall...and you know how quickly things like this happen in a hospital. Sigh. Did I mention that I was anxious and hungry?

Finally, they carted me off to the CT room (they use current CT scans of my liver to make sure they are sticking the needle in the right spot). I start to feel the sedation (meant to put me in a twilight zone). The room is spinning. The doctor preps my side and I jokingly ask if he is done yet. He does not laugh. He tells me to go to sleep and let him do his job. Then the needle goes in. And the tears, panic, and labored breathing come. It reminds me of college days when I would be drinking and clearly inebriated only to snap instantly out of it to deal with some crisis or drama demanding attention and focus. The doctor requests more sedation. It doesn't work. I am immune to it now. I am told afterward that I have an extremely high tolerance to the sedation and that next time I have a procedure, I should be given Valium. Damn. NOW you tell me? Sigh. The doctor stabs my liver 6 or 7 times. He proudly shows me the teeny tiny worm-like pieces he has collected in a vial. I continue crying...stopping only once to say "cool". I cry for like 30 more minutes (I blame this on the sedation...it has happened every time). The nurses laugh and tease because I tell them that the sedation makes me sad. LOL.

I spend another hour and a half in recovery, eating saltines and drinking ginger ale. My husband comes and the 4 of us sit and stare at one another. My diaphragm keeps cramping and spasming painfully. It sucks as much as the last time except I am not nauseous. Yay!

I am still recovering today, though I think it is starting to ease. Days like this...full of pain and frustration make it difficult to stay positive, but I know that I will come out of it and back into the sunshine of hope. 

Anyway...thanks for listening and thanks for letting me share the trauma of the 2nd stabbing of my liver. Only better days ahead, I know! Hopefully, this will all be worth it. If not...like my dad always likes to say "It builds character". That being said...my parents are  the real heroes here...they built a lot of character yesterday sitting and waiting and waiting and sitting. At least I had some drugs and excitement to break up my day! Thanks Mom and Dad!!

Love, Vashni

Mid-Night Brain Rumbles

I write my best blog posts in my head in the middle of the night. And then, when I sit down to write in the daylight...nothing comes. I wonder what it is about the deep dark of the night. The way the quiet and the shadows break through my brain and push down the walls of defense that I cling so tightly to during the daytime hours. The cogs of the wheels start turning and churning. Hidden portals of my mind open up like great garage doors...exposing all the junk I collect throughout the day. I am closest to God in these moments and most likely closest to my real self.

Sometimes, I will get up and go lay in the guest bed and read or journal. My minions (otherwise known as The Dog and The Cat) always join me. They have become a normal part of my solitude. My little living angels of grace. Sometimes my husband will come in and check on me. Most of the time he slumbers away, unaware of my mid-night wanderings and wonderings. 

What do I think about at 3 am? What don't I think about? I am just like every other living female on the face of the earth. Sometimes I spend hours thinking about all that needs to get done. I make my to do list and my shopping list and my personal growth list and my bucket list and my leap list all in my head...only to forget it all in the morning. Ha. 

I am learning to pray a little more. A little more deeply. This seems like a good time to do this. All the earth seems so quiet and far away and heaven or the universe or whatever it is out beyond seems a little bit closer to me. A little easier to grasp.

Sometimes I think about cancer. I think about life before cancer and life now. People are different. I am different. Cancer brings on a subtle yet undeniable shift in all my relationships. I toss around in my head whether this is a good thing or a bad thing. I can't define it. It is neither. It just is. 

I think about pain. Ever notice how we feel pain more intensely at nighttime? I know there is a biological reason for this...the endorphins in our bodies have dropped off for the night. Even they need a break from the daylight. But, even as our pain is more intense, our emotional strength is at it's weakest, I think. In the middle of the night, a tiny little gas pain becomes the beginning of the end in my head. A toe cramp? A sign that something in my body is seriously not working right. This is another subtle change of cancer...pain is no longer just pain. Every tiny pain gets examined and analyzed by me and all of The Google. If I wasn't a hypochondriac before (I was), I most certainly am now. And The Google. It knows.

Sometimes, I lay in bed and feel rage at my husband and The Dog and The Cat for being able to sleep so easily. How dare they! I fake cough, I deep sigh, I groan...in  hopes of bringing one of them to my side of the sleepless night.

Last night...I contemplated joy. I was reading before bed One Thousand Gifts by Ann Voskamp again and a statement jumped out at me and slapped me in the face. "Expectations kill joy". How true is this!? How many times have I placed my own expectations on a relationship, on an event, on an outcome, on MYSELF...only to be hurt or disappointed? In 38 years? A lot! This is another one of those balancing acts I haven't figured out. I remember writing in my journal YEARS ago...contemplating the subtle difference between expectation and hope. Maybe not the difference, so much, but the possibility of having hope without expectation. It seems hard. It seems nearly impossible. But, I know it must be attainable. Hmm. I guess I am just gonna have to wait til another sleepless night arrives and I can puzzle it out in my un-hindered brain.

Have a great night, y'all!!

Love, Vashni

Time

March already!? It's unbelievable how quickly time is flying by...especially now that I am starting to realize that there just isn't enough of it! 

My therapist and I talked recently about my lack of motivation lately...otherwise known as "inertia". I have had this issue my entire life. This is not a new problem at all. I am more motivated and active when I have more to do. And, right now, while I am unemployed and focusing on rest and health...I find myself...uhh...inert. I just can't get myself going. It's so frustrating because while I see there is benefit to resting and being still and just sitting with myself, I feel like I am wasting time. Time that is precious. Time that I won't get back. This delicate balance is a struggle for me. I suppose it is just a fact of life and the human condition. I shall not beat myself up about it.

And then there is "Words with Friends". Dammit. I need an intervention. Because while I am sitting still and being with myself, I should at least be contemplating the deeper meaning of life and all the treasures it holds...not trying to figure out how to use my letter "Z" to my best advantage. Sigh. At least I am exercising my brain cells. Or something like that.

Anyway...I am almost done with week #1 of the Topotecan cocktail. Doesn't it sound like a drug that I should be taking while banging on a drum and chanting? Maybe puffing on a peace pipe or cleansing with some sage? The side effects so far have been almost non-existent. I will get my blood counts done tomorrow to see how those red and white blood cells and platelets are faring, but based on how I feel...I think they will be in the "good" or "ok" range. Perhaps my vampiress days are over. Still having some back and pelvic pain, but I have some good drugs for when I need them, which is mostly at bedtime. You know..."sorry honey, I just took some narcotics...I am too tired to scratch your back." LOL. I kid. I kid. 

Next week...I am having another liver biopsy. If you read my blog post about the first one...you know how traumatized I was by this experience, so I am a little reluctant and anxious. I am told that since the masses are a little larger, it will be a much easier procedure...but, I am not totally convinced. The reason for this "redo" is worth it to me though as my doctor is going to send this tissue off to a company: Caris Life Sciences. Here, they will do a targeted profiling of my cells and hopefully find the best treatment options specific to my body. It's new-ish. It's a long-shot. But, it's worth the liver jabbing if it can save and/or prolong my life. And if it can help science...I am kinda all about that too. 

That's my update for now. Take care. Live long and prosper! 

Love, Vashni