tag:blogger.com,1999:blog-73676344416012193062024-03-13T22:08:35.993-04:00Stepping Lightly with the FlowVashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-7367634441601219306.post-59728917553783258042012-11-18T02:28:00.000-05:002012-11-18T02:28:00.181-05:00"Unable are the Loved to die"..."Unable are the Loved to die. For Love is Immortality"<br />
- Emily Dickinson<br />
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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 <a href="http://steppingthruthegrief.blogspot.com/">here</a>. Also, one of Vashni's dear friends is setting up a <a href="http://www.vashnisrallygroup.org/">website</a> (currently under construction) to honor her memory.<br />
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Peace.<br />
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<br />Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-66474503093966862102012-11-02T23:00:00.001-04:002012-11-02T23:15:41.689-04:00OverwhelmedVashni 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, <span class="yiv660152571messageBody"><span class="yiv660152571userContent">355 Church
Rd, Etters, PA on Sunday, November 11, at 2:30 pm.</span></span><br />
<br />
<span class="yiv660152571messageBody"><span class="yiv660152571userContent">I suppose the title of this blog post is intended to have a double meaning.</span></span><br />
<br />
<span class="yiv660152571messageBody"><span class="yiv660152571userContent">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.</span></span><br />
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<span class="yiv660152571messageBody"><span class="yiv660152571userContent">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.</span></span><br />
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"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."<br />
<br />
"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."<br />
<br />
"<span class="userContent">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."</span><br />
<br />
<span class="userContent"></span><br />
<span class="userContent">"</span><span class="userContent"><span class="userContent">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?"</span></span><br />
<br />
<span class="userContent"><span class="userContent">"</span></span><span class="userContent"><span class="userContent"><span class="userContent">Your words of encouragement when I was having a bad day or unsure of myself always lifted me up."</span></span></span><br />
<br />
<span class="userContent"><span class="userContent"><span class="userContent"> "</span></span></span><span class="userContent">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.) <br /> Well, Vash, you won... <br /> I cried today."</span><br />
<br />
<span class="userContent">"</span><span class="userContent"><span class="userContent">You touched so many lives. You made a difference."</span></span><br />
<br />
<span class="userContent"><span class="userContent">"</span></span><span class="userContent"><span class="userContent">[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 you</span></span>rself.
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"<br />
<br />
<span class="userContent"><span class="userContent"> </span></span><br />
<br />
<span class="userContent"><span class="userContent">"</span></span><span class="userContent"><span class="userContent">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</span></span> 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.<br />
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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"</div>
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(<i>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</i>)<br />
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"<span class="userContent">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"</span></div>
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<span class="userContent">(<i>Note: this is exactly what I'm trying to accomplish with this blog post...shifting from the former to the latter</i>) </span></div>
<span class="userContent"><span class="userContent"> </span> </span><br />
<span class="userContent"><span class="userContent"><span class="userContent"></span></span></span><br />
"<span class="userContent">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."</span><br />
<br />
<span class="userContent">(<i>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>) </span><br />
<span class="userContent"><br /></span>
<span class="userContent">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.</span><br />
<span class="userContent"><br /></span>
<span class="userContent">"</span>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?"Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-4665583034259869542012-10-16T20:53:00.000-04:002012-10-16T20:53:33.471-04:00Cue the Guest BloggerIt'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.<br />
<br />
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.<br />
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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.<br />
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(* Our appeal decision arrived yesterday. Denied. According to the internets other large health insurers will approve Avastin as a <b>second </b>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 <b>fifth </b>line of treatment even with some cited clinical studies that Avastin may benefit those with Vashni's type of cancer.)<br />
<br />
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 <strike>cover their asses, look for evidence to support a conclusion they made without data</strike> 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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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).<br />
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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. <br />
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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.<br />
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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.<br />
<br />
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. <br />
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<br />Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com7tag:blogger.com,1999:blog-7367634441601219306.post-8524901904576666002012-08-31T22:26:00.000-04:002012-08-31T22:26:05.573-04:00Live, Laugh, Love...and everything in between<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">My Love Box quote today is: "A good laugh is sunshine in a house."~~William Makepeace Thackeray</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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 mean...do 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? Yeah...you know the answer.</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. </span></span><br />
<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. Ok...you 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:</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><a href="http://4.bp.blogspot.com/-XCO_R_szwh8/UEECa2OlBoI/AAAAAAAAAVI/6bVtxyRCCUk/s1600/alien_baby_picture_1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="http://4.bp.blogspot.com/-XCO_R_szwh8/UEECa2OlBoI/AAAAAAAAAVI/6bVtxyRCCUk/s200/alien_baby_picture_1.jpg" width="144" /></a></span></span></div>
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">Sigh....so 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??</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><a href="http://4.bp.blogspot.com/-7wF7RUi2dPY/UEFf3mTu66I/AAAAAAAAAVY/Cco4HtfYMsM/s1600/snnoki_baby_ultrasound.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="251" src="http://4.bp.blogspot.com/-7wF7RUi2dPY/UEFf3mTu66I/AAAAAAAAAVY/Cco4HtfYMsM/s320/snnoki_baby_ultrasound.jpg" width="320" /></a></span></span></div>
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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.</span></span><br />
<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><br /></span></span><span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. </span></span><br />
<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. Anyway...here is what happens when I try to read:</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><a href="http://1.bp.blogspot.com/-V7wvg7pjqIY/UEFp6ycjkmI/AAAAAAAAAVo/442c2rpsvJM/s1600/asleep.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="148" src="http://1.bp.blogspot.com/-V7wvg7pjqIY/UEFp6ycjkmI/AAAAAAAAAVo/442c2rpsvJM/s200/asleep.jpg" width="200" /></a></span></span></div>
<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">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. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni</span></span><br />
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<span style="font-size: small;"><span style="font-family: Georgia,"Times New Roman",serif;"><br /></span></span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-50462779506596907502012-08-21T12:22:00.000-04:002012-08-21T12:22:08.947-04:00Every Good Story Has Lots of Twists and Turns, Right?<div style="font-family: Georgia,"Times New Roman",serif;">
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. </div>
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The problem is...my 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 today...in the present moment. Yup...I need to do better.</div>
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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.</div>
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OK...so 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.</div>
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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.)</div>
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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 {<span class="st">bevacizumab</span>}) 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.</div>
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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). </div>
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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! </div>
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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. </div>
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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.</div>
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Love to you all, Vashni</div>
Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com1tag:blogger.com,1999:blog-7367634441601219306.post-88656712230810779952012-08-15T22:08:00.001-04:002012-08-15T22:08:48.694-04:00Mountains, Tunnels and Catheters...Oh My<div style="font-family: Georgia,"Times New Roman",serif;">
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. </div>
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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.</div>
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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, etc....it'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....</div>
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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... </div>
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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...</div>
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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. </div>
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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.</div>
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Anyway, my husband stayed by my side the entire time, bless his heart. But, I found myself needing to rest more and more often...as 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?" </div>
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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. </div>
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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. </div>
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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. </div>
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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)<b>. </b>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. </div>
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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!</div>
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Love you all, Vashni</div>
Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com1tag:blogger.com,1999:blog-7367634441601219306.post-82959852564780718982012-07-26T17:34:00.000-04:002012-07-26T17:34:11.228-04:00Inch by Inch<div style="font-family: Georgia,"Times New Roman",serif;">
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 death...you can't really anticipate what only God knows.</div>
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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 now...you 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 now...it doesn't seem to want to go anywhere.</div>
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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. </div>
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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. </div>
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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 relief...you can't imagine how many people responded to my news with a "what now?" Yeah...what now?</div>
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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.</div>
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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 inch...in 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.</div>
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<blockquote class="tr_bq" style="font-family: Georgia,"Times New Roman",serif;">
<span id="yui_3_2_0_4_13433202485351890" style="font-size: 14pt; font-weight: normal; line-height: 125%;">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?" <br /><br />Just keep to <em>the present little inch</em> that is before you. <br /><br />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.</span><br /> <br /><span style="font-size: 12pt; font-weight: normal; line-height: 120%;"><strong><span><b>Mary Ann Kelty, <span class="yiv1956972850st">1789-1873 (Adapted)</span></b></span></strong><span><span><span>English Author and Poet</span></span></span></span></blockquote>
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<span style="font-family: Georgia,"Times New Roman",serif;">Take care, my friends, inch by inch.</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni </span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com1tag:blogger.com,1999:blog-7367634441601219306.post-14409835343102324882012-07-20T17:35:00.000-04:002012-07-20T17:35:09.484-04:00...And I'm Just Not Sure How to Feel About It<div style="font-family: Georgia,"Times New Roman",serif;">
Sooo...I have a CT scan on Monday morning. I can't decide if I feel anxious or not. I don't <i>seem </i>to be anxious, but is it because I am <i>not </i>anxious or is it because I am floating along on some sort of denial cloud right now? Ha ha. And, either way...is it going to hit me like a whip in a couple of days when it's really happening? </div>
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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.</div>
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Hahahahahahahahahahaha. Sigh. </div>
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And then I think....well, maybe I am just used to and getting comfortable with the disappointment. Like...how 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?</div>
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Perhaps...I just have a good feeling about this trial. But...to 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. </div>
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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. </div>
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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. </div>
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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!</div>
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-1846984706363958142012-07-11T17:16:00.002-04:002012-07-11T17:16:57.362-04:00Tick, tock, tick, tock....<div style="color: #0c343d; font-family: Georgia,"Times New Roman",serif;">
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)!</div>
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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. </div>
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I was all gungho about "finding the balance" between being a good stepmom and taking care of myself. How did I do? Fail. Seriously...how 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.</div>
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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. </div>
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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. </div>
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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.</div>
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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. </div>
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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. </div>
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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!!!</div>
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<span style="color: #0c343d; font-family: Georgia,"Times New Roman",serif;">Vashni </span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-59289602437357296462012-06-16T14:51:00.000-04:002012-06-16T14:51:45.751-04:00Week One is Done...Fun Fun Fun<div style="font-family: Georgia,"Times New Roman",serif;">
Howdy Y'all!</div>
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(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.)</div>
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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. </div>
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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. </div>
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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. </div>
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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. </div>
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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.</div>
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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 what...it works! Yesssss.</div>
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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:</div>
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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. </div>
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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! </div>
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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! </div>
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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!!</div>
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com1tag:blogger.com,1999:blog-7367634441601219306.post-25000581908563478572012-06-08T13:18:00.003-04:002012-06-08T13:18:51.291-04:00Tenacious V<div style="color: #0c343d; font-family: Georgia,"Times New Roman",serif;">
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.</div>
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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. </div>
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What one member said to me...was that...you 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!<em><span style="font-size: 12pt;"> </span></em></div>
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<em><span style="font-size: 12pt;">te·na·cious</span></em><span style="font-size: 12pt;">/təˈnāSHəs</span></blockquote>
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1. Not readily letting go of,
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<span style="font-size: 12pt;">2. Not easily dispelled or discouraged; persisting in
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Some synonyms of tenacious: stubborn, obstinate, resolute, persistent, insistent, dogged, and determined.</div>
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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 <i><span style="font-size: large;">stubbornly, doggedly, determinedly</span><b> </b></i>hold a <span style="font-size: x-large;"><i>tenacious </i></span>grip on my life. </div>
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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!!</div>
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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. </div>
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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. </div>
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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. </div>
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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!</div>
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Love to you all, Vashni </div>
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(aka Tenacious V (ha!))</div>
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<br /></div>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-70698570485291016992012-05-22T16:01:00.000-04:002012-05-22T16:01:27.880-04:00I'm Amazing, You're Amazing, She's Amazing, We're All Amazing<div style="color: #073763; font-family: Georgia,"Times New Roman",serif;">
Hello Blogosphere,</div>
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It's me again. It's been awhile, so I wanted to check in and say "hi" and give an update. HI!!</div>
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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.</div>
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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 go...at 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. </div>
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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. </div>
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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 choice...you just do it. Trust me. </div>
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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. </div>
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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 <a href="http://steppinglightwiththeflow.blogspot.com/2012/05/my-novel-about-nih.html" target="_blank">Novel about NIH</a>). 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. </div>
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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 "So...you 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.</div>
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni </span></div>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-29727744978053860032012-05-08T15:14:00.001-04:002012-05-08T15:14:17.575-04:00Yesterday Was Kind of a Bitch to Me<br />
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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. </div>
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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!</div>
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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 also...well...it'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. </div>
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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. </div>
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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. </div>
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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. </div>
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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. </div>
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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.</div>
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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. </div>
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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 now...at the NIH anyway...my 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.</div>
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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.</div>
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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. </div>
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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! </div>
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<span style="font-size: small;"><span class="messageBody" data-ft="{"type":3}">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?</span></span></h6>
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The answer: which I got immediately....yay me...is WORRY. (remember my<a href="http://steppinglightwiththeflow.blogspot.com/2011/10/who-of-you-by-worrying-can-add-single.html" target="_blank"> "Worry post"</a>)</blockquote>
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Her response to me: "<span class="commentBody" data-jsid="text">You're right, Vashni! I've
been listening to a message by one of my favorite ministers: Adrian
Rogers on "Words for the Worrier." </span><span class="commentBody" data-jsid="text">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 </span><span class="commentBody" data-jsid="text">2) things we can't do anything about--for that very reason.</span></blockquote>
<span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Love and hugs to you all!! Check your worry at the door and live in the present!</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Vashni</span><br />
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<br />Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com1tag:blogger.com,1999:blog-7367634441601219306.post-16894738103457608992012-05-06T20:29:00.000-04:002012-05-06T20:29:45.079-04:00My Novel about NIH<div style="font-family: Georgia,"Times New Roman",serif;">
Howdy Friends. It's been a little while since I have posted a health update and I have a fair amount to fill you in on, so I figured I better get started before I start to forget everything or before I become overwhelmed with even more new stuff. </div>
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After about 2 weeks of living in semi-denial and overwhelmedness at the news of my liver tumor(s) (I am really unclear about how many there are at this point) growing, I finally snapped out of it (a little) and started to do something about it. Thanks to a little help from one of the doctors at Hopkins, my husband, and some prodding from my support group, friends, and family, I called the National Institutes of Health (NIH). I located 2 clinical trials there that may or may not be suitable for me and set up a consultation with the National Cancer Institute (NCI) Center for Cancer Research (CCR). </div>
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So, on Wednesday, May 2nd, my parents and I embarked on our first epic journey to the NIH. I say epic, because well...it was quite a journey for us quiet folk from the rural hills of south-central Pennsylvania. The journey involved all of us arising at the first crack of daylight, hastily drinking some coffee and tea, fretting about what to bring and what to leave behind, what to wear, when to leave, how to get there...you know...the usual. My family and I. We fret.</div>
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We hit the pavement at about 6:45am and hopped onto I-270 to join the ranks of early morning metro DC commuters. We quickly fell in pace with the warped race speed of about 16 mph. This drive consisted of...well...more fretting, my Mom reading road signs to us (another favorite past-time of the ladies in my family) and my Dad counting the number of people who were illegally driving in the HOV lane. We passed time quickly, and witnessed the aftermath of only one minor accident, as we arrived at NIH within an hour of our departure.</div>
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Once we drove onto the NIH campus, we were guided to the first security stop. Not knowing what to expect, we were all a hot mess of questions and bewilderment. I stopped and turned off my engine. A security guard wrote down a number on a small slip of paper and advised me to drive forward. I took said paper and immediately lost it. I drove forward, stopped, and turned off my engine again. This time we were advised to step out of the vehicle. God help us. You know how kids like to play "Chinese fire drill" at stoplights and all get out, run around the car, and get back in? Yeah. We were the antithesis of this. Just getting out of the car, we were already holding up the works. After standing outside in bewilderment, we were advised to go inside through some secret passageway (not really...secret to us because we were too clueless to find the entrance). Once inside, we went through what appeared to be just like an airline security system. We all made it through unscathed. We then had to proceed to a check-in desk, show ID and provide some information in order to get our visitor ID badges. I was asked for the number on that little slip of paper I lost, which turned out to be my license plate number, which then I had to go back outside to retrieve, gumming up the works even more. Sigh.</div>
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We were then advised to drive back the way we came in and to follow the road through 8 stop signs (eight!), until we reached the parking garage of Building 10. So we counted off stop signs..1, 2, 3, 4....found the entrance to the parking garage and parked. Then we walked and walked and walked through the bowels of the parking garage until we found an elevator. Once we boarded the elevator, I felt a sigh of relief, until we exited the elevator and I realized we still had no clue where we were. We again walked and walked the labyrinth of halls within Building 10 until we finally found the Admissions desk. I registered. This was an hour long process. Not counting the hour it took us just to get to the desk. Ha. </div>
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Eventually, we headed up the the 12th Floor Clinic (which may or may not be my new home in the coming weeks). Here, I got poked and prodded, measured and oriented. Then they moved my parents and I to an exam room where I was examined by one of the Post-Doc Fellows. He asked a lot of questions that I am sure made my parents squeamish and uncomfortable. Sorry about that Mom and Dad! In his defense, he asked if it was ok to ask these questions in front of them, to which I said "sure". I keep a pretty much tell-all blog for goodness sake! LOL.</div>
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After this exam, my parents and I sat for TWO HOURS and waited. At this point, I was feeling a little irritable, I was disenchanted by NIH in that moment for sure. But, alas...finally. Two doctors, a research nurse and my fellow arrived. </div>
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During this part of the visit, I was given information about a clinical trial for a chemotherapy drug called ixabepilone. This drug is used as a second-line therapy in breast cancer and they are testing it on patients with cervical cancer who have shown resistance to many of the drugs with which I have shown resistance. Side effects and treatment are similar to everything I have experienced with previous chemotherapies. Success so far shows tumor shrinkage in about 15% of the patients. This is not a cure. This is a trial that would "buy me more time" per the doctor.</div>
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The doctor then stated that because they want to find the best treatment for me, he brought in another doctor with a completely different approach. This doctor explained (and you have to forgive me if I get some of these details and medical things wrong...but I will give you the gist of it in my uneducated prose) that what his team is doing for patients with cancers related to the HPV virus, is taking tumor samples from the patient's body and putting them in a lab. In addition to the cancer cells, inside these tumor samples would be the patient's own immune cells...specifically T-cells, which are known to destroy virally-infected cells and tumor cells. They would harvest the T-cells til they had a gadzillion times more than what they started with. Then, the patient is hospitalized and given a chemotherapy to specifically destroy the patient's immune system. Then the T-cells are transplanted back into the patient, with the hope of killing off the tumor. This has been successful in patients with melanoma. This could offer a cure. Sounds scary, but also potentially awesome. I would only qualify if we can get me off of the steroids though. Otherwise, they are interested in me. </div>
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I, thirdly, spoke with a nurse about another chemotherapy trial. This one is for two drugs known as dasatinib and bevacizumab. I have tried neither type of drug before and the dasatinib showed up on my targeted study as a drug that could potentially be of clinical benefit to me. This one is another that would not be a cure. It would "buy me time". They are specifically testing these drugs on "advanced solid tumors" such as mine.</div>
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So...where does this leave me? With options and lots of questions and some serious decisions to make. But wait! There is more. The doctor scheduled me to come in the following day for a CT scan to see what my tumors have been doing the last month. The idea was that this would give me an idea of how aggressive I need to be with treatment, whether my current drug (tamoxifen) is doing anything, and just in general where I currently stand health-wise. I traveled back to NIH alone on Thursday (this time I did not have to go through security and things went much more smoothly). After my CT scan, I saw the doctor (and the scans). The liver tumor has again grown. Not so much this time, but enough. As he puts it, the liver tumor is "moving along". The "stuff" in my pelvis on the other hand has either reduced in size or has stayed the same. Per the doctor, what is in my pelvis is "notsomuch". It's the "medium-sized" tumor in my liver that we really need to deal with. And soon, before it gets too much bigger.</div>
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At this, the doctor suggested something that I have been asking about all along. This, per the doctor, is "outside the box", but there is a possibility that we could go in and "kill the liver tumor" and "cut off it's blood supply". Then deal with the pelvic stuff separately, with chemotherapy or with the T-cell immunotherapy. Having some sort of liver surgery sounds hella scary to me (especially given my extreme dislike of a simple liver biopsy), but if we can do it...I think I want to try it. He has me coming in tomorrow (Monday) for a MRI and PET scan. Both of these tests will give us an even better idea of what we are dealing with in the liver and if this is even a plausible idea. So...back to NIH tomorrow I go. </div>
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To sum all this up...I am excited about NIH and about this doctor in particular. He spent a long time with me on Thursday answering all my questions and listening to my concerns. He seems genuinely interested in finding the best approach for me, whether it's his trial, someone else's or something completely outside the box. He even emailed me after 9pm on a Friday night to advise me that I should have him paged after my MRI on Monday and that he was looking forward to seeing me. I have that feeling of "why did I wait so long?" But, I also know that thinking that way won't help. I am here now. That's all that matters. </div>
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One more thing...I know that I have some big decisions to make and I know some of you will want to offer your advice and opinions about what I should or shouldn't do and I get that. But, for now, I would appreciate if you refrain from sharing your opinion unless I specifically ask. I just don't want to get overwhelmed and confused with everyone's well-meaning advice right now. Instead, I ask that you please please please pray that I am able to make the right decisions for me and that I find the best treatment that will hopefully not only prolong my life, but save it. I want to be around to pay it forward and to give others hope and to just generally appreciate life in the way I didn't or couldn't before all this started.</div>
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Thank you!!!!!!! Love, Vashni</div>
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<span style="font-family: Georgia,"Times New Roman",serif;"> </span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com2tag:blogger.com,1999:blog-7367634441601219306.post-61550485556508301872012-04-25T17:15:00.001-04:002012-05-06T18:03:31.790-04:00You'll Eat It and You'll Like It<div style="font-family: Georgia,"Times New Roman",serif;">
Today I am going to write about something that has nothing to do with cancer (yay!), but has everything to do with my sanity (or lack thereof) as a human being. Today's topic: Meal Planning.</div>
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Up until the day I moved in with my husband, I only really ever had to worry about feeding one mouth. Mine. So, between...what say...1995 and 2010, I pretty much did whatever I wanted in regards to breakfast, lunch and dinner.</div>
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Thinking back...I went through many different phases. Healthy phases...where I ate spinach salads and whole grains mixed with more vegetables day in and day out. Unhealthy phases...like the time I ate Lucky Charms morning, noon and night for a couple of weeks. (I do not recommend this. It did some funny things to my umm...poo.) Sometimes, I would cook myself elaborate multi-course meals, usually with a glass of wine between each course (I always seemed to end up pretty sloshed by the end of those nights). Then, there was always the old standby of "breakfast for dinner". Bacon and eggs. Waffles. Pancakes. French Toast. Hash browns. All those glorious breakfast foods that a working girl never really gets to eat. Mmm. </div>
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Before I moved in with my husband, I was pretty much eating Lean Cuisines or spaghetti or stir-fry every night. Shopping was easy. Planning was easy. And, if I wanted to eat spaghetti for dinner 7 nights in a row...more power to me.</div>
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Then, I moved in with The Hubs. And life, as we know it, changed in ohsomany ways. I lived with my husband for about 6 months before we actually got married. And I have always been grateful that I did, because it was HARD and I think if I had just officially and legally tied the knot and THEN went through those first 6 months...I may be locked up in a mental institute somewhere today. Seriously. But, I digress.</div>
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I think that, at first, I was really excited about the prospect of this new "role" in my life. My new responsibilities as the "domestic goddess" of the household. It was a new opportunity for me to plan and organize and find new and added purpose in my life. An opportunity for people to count on me and appreciate me (hahahahahahahaha). Sigh. I had so much to learn.</div>
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With my stepdaughter in the house for 50% of our dinners, meal planning took on an added challenge. I wanted to eat healthy (and lose weight for my wedding), but I wanted her to actually eat what I made without too much fuss (hahahahahahahahaha). Sigh. Again...I had ohso much to learn. (During that time, I also learned that my adult self-esteem wasn't all that solid because I did, indeed, feel hurt and sad when my meals were rejected by a then 6 year-old).</div>
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Eventually, I started to develop a system. We had a repertoire of dishes (that I TRIED to make healthy) I could count on each week. They all needed to be relatively easy, as I did work a full-time job and my stepdaughter's bedtime was fairly early...we didn't need her eating dinner in the bathtub. </div>
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During this time...we pretty much counted on a few things for nights we had my stepdaughter: mac and cheese; tacos; hot dogs; chicken with rice and broccoli. Every weekend, there was some sort of slow cooker meal. Every Tuesday was "Taco Tuesday". I loved this. I didn't have to think about it and I didn't have the usual "What are we eating for dinner?" interrogation <insert whiny tone here> the minute that my husband and stepdaughter walked in the door. </div>
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Then my husband, who had been fairly quiet and accommodating to my meals, decided to start having an opinion. The nerve. I can't remember if this happened before or after the official knot had been tied. My guess would be after...once he legally "had" me. LOL. So, one Tuesday while I was happily constructing a taco (and mind you...I changed it up a bit here and there...using turkey or chicken or fish, soft shells, crunchy shells, etc.) and he says, "I am sick of tacos. We need to stop the tacos for awhile." WHAT!? This was one of the few mindless things I had going on in my life and he wanted to take that from me? Sigh.</div>
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So over the past 2 years, I have experimented with the meals and with the "rotation". Sometimes successfully. Sometimes, notsomuch. But, we all eat every night and so far no one has died of starvation or food poisoning. Yet. (I also have learned to lower my domestic goddess expectations). But, in all honesty, I really feel no joy in this task. Some meals incur grumblings and complaints, while others bring quiet indifference. Very rarely is there an acknowledgement of how awesome a meal is. Ha. It happens. And its usually by me. But...really.</div>
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How did this become my responsibility? What would happen if the responsibilty was turned over to my husband or to my 8 year-old stepdaughter? Does anyone enjoy this task? Does anyone have a trick? Sigh. I hope I can find a way to enjoy the planning of the meals....</div>
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Until then, I will continue with my favorite new line: As my husband skeptically questions what he is about to put in his mouth...."It doesn't matter. You'll eat it and you'll like it."</div>
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So there.</div>
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<span style="font-family: Georgia,"Times New Roman",serif;">What's for dinner? Vashni</span><br />
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<br />Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-20657713018812888812012-04-19T17:08:00.000-04:002012-04-19T17:08:22.794-04:00How Having Cancer is Like a Full-Time Job<div style="font-family: Georgia,"Times New Roman",serif;">Let me first start off by saying that many, many, many people diagnosed with cancer do continue to work full- and part-time jobs in addition to managing their cancer. This can be by choice, but in most cases I would guess, it is by necessity. I will be the first to tell you that I have no idea how they do it and I wish that everyone facing cancer treatment had the liberty...as I have had...to stop working and focus on getting well. Reality isn't that kind or generous sometimes though and my heart goes out to those individuals who have to juggle both work and a life-altering diagnosis. Especially those that juggle work, family (kids) and cancer. I just cannot even comprehend.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Anyway...I was thinking the other day how much managing my cancer and all the other "stuff" that comes with it is kind of like having a full-time job. Here is what made me think that:</div><ol><li style="font-family: Georgia,"Times New Roman",serif;">Rolodex--I realized while filling out paperwork for yet another doctor (a pain management specialist), that I really needed a rolodex to keep all my doctor's business cards and contact information. I have a gadzillion cards floating around with hand-scribbled alternate phone numbers and email addresses and I haven't really figured out a method for storing these things.... other than letting them "float around". I do have an iPhone...I bet there is an app for that.</li>
<li style="font-family: Georgia,"Times New Roman",serif;">Expense Reporting--My husband and I decided that it would be a good idea for 2012 to keep meticulous records of how much money we (and the insurance company) are spending toward my medical care. I am one of those people who gets a "stiffy" at the thought of creating a spreadsheet (ask any of my former coworkers), so this plan had me salivating at the laptop. Stick me in a room with some data, a computer, and the Microsoft Excel program and then just slap a happy face sticker on my forehead. I am on cloud 9. To up the enjoyment factor for me...ask me to give a power point presentation, with graphs, on my findings. To be sure...this spreadsheet is pretty elaborate and keeping it updated is quite tedious, but it is this kind of painstaking detailed work that I have always thrived on. For the record...some interesting facts from my spreadsheet...this year to date, we have logged over $100 in parking fees for doctor's visits, treatments and procedures. I have visited my oncology office 27 times (racking up over $92,000 in charges (that's before insurance adjustments and payments...don't worry my portion is totally tiny compared to the total charge...but imagine if you had no insurance!!)); have had and/or tried 14 different types of prescription medications (no wonder they know me by name at the pharmacy); and have had 4 blood transfusions, 2 CT scans and 6 therapy sessions with a mental health counselor. All in the first quarter of 2012! I love my little spreadsheet of information.</li>
<li style="font-family: Georgia,"Times New Roman",serif;">Time management--An obvious one...even though I am not in a real job right now, I still sometimes have a pretty full "meeting" schedule. In fact, I don't think I have ever consulted my calendar as much as I do now. It's like having a traveling job...OK, where do I need to be today? What time of day is it? What are the traffic and weather conditions? If I am having some sort of procedure, transfusion or treatment, I sometimes need to make sure I have someone to drive me. My husband can help with this sometimes, but other times, I need to rely on someone coming from out of town, so that means preparing the house for guests in advance of an appointment. You have to be organized, I tell you.</li>
<li style="font-family: Georgia,"Times New Roman",serif;">The pills--Another realm of time management that I have recently discovered is managing all these pills. I have my regular pills, my chemo pill, my pain pills and my constipation pills. Oh and vitamins...my vitamin pills. I found out recently that when it comes to pain pills (which you really don't want to take too often), I am not so good at remembering when I took the last dose. So, I had to start a little notebook to keep track. I visited with a pain management specialist today, who basically said that if I am taking pills as often as I have been then well...my pain is not being "managed" (LOL)...so hopefully on his plan, I can get back to leading a somewhat normal life where I am not popping a pill every few hours. Ha. When's my next hit, man...</li>
<li style="font-family: Georgia,"Times New Roman",serif;">The Paperwork--I have so many papers, I really don't know what to do with it all. The bills, the EOBs, the Flexible Spending Account statements, the lab reports, the pathology reports, the receipts....it goes on and on like the theme song from Titanic. I do have an accordion-type file thing for filing my papers, but even that doesn't seem to be able to contain and control the forest of trees I am collecting on the floor of the study. Then, there are the papers I have to fill out and submit to the insurance company or the Flexible Spending Account people or the doctors. The Boss (aka My Husband) has been getting on my case about these lately. He is not a fan of unfinished business and I have a lot of unfinished business piling up at the foot of his desk recently. :oD <--sheepish grin</li>
<li style="font-family: Georgia,"Times New Roman",serif;">Networking--I am realizing that just as in my professional life, of which I currently have none, it's good to "know" people. My oncologist is friends with The Doctor at Hopkins. Without that relationship, I doubt that I would have gotten as thorough care as I have gotten and I doubt that I would have gotten in to meet with The Doctor so quickly. Likewise, I can thank my Primary Care Physician for getting me referred to my awesome oncologist. I know there have been other connections in this journey that have helped me and that there will likely be more. Anywhere in life, it's good to "know people".</li>
<li><span style="font-family: Georgia,"Times New Roman",serif;">Coworkers--In pretty much all of the jobs I have had in the past, no matter how many spreadsheets I was able to joyfully create, it was my coworkers who really made the job worth it. It was my coworkers who made me want to get out of bed each day and come to work. I kind of feel like all of you...my friends and family and medical team are my coworkers for this job.<span style="font-family: Georgia,"Times New Roman",serif;"> You send me notes and gifts to make me laugh and smile. You drive me to treatments. You research and google things for me so that I stay away from the bad stuff. In essence, you make me want to keep working and getting better. Not just for me. For all of you too. </span>So, thank you! Thank you for giving me a reason to keep going to work everyday!</span></li>
</ol><span style="font-family: Georgia,"Times New Roman",serif;">Love to you all, Vashni </span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-38210257822638412732012-04-14T18:30:00.000-04:002012-04-14T18:30:40.432-04:00To the Hip to the Hop(kins)<div style="font-family: Georgia,"Times New Roman",serif;">Hello! I owe you all a follow-up post to fill you in on my Hopkins visit.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">First off, let me tell you...this Hopkins cancer experience was so much better than my last experience there and it turns out that it is because I was in two completely different parts of the hospital system. This time, I was seen at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins Hospital. Before, I was seen in the regular Outpatient Hospital Building, where I waited over 2 hours to actually see the doctor, whose bedside manner was "eh"; they expected me to do all the legwork to collect my previous medical records; and I got the feeling that they felt they could do these things just because they were Hopkins and they could.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">This time around, Hopkins managed to collect (or at least start the process of collecting) all my previous medical records, including actual pathology slides of my cancer cells, during the 2 days they had to prepare for my visit. They pretty much knew everything about me before I even walked in the door. (When I go to the Wilmer Eye Institute at Hopkins, I always have to explain my entire medical history to whatever fellow or resident I meet with first and then sit and watch them read my medical records...it irks me to no end). My wait time was about...5-10 minutes max. I didn't see The Doctor right away, but I had a scheduled appointment with her fellow for a half hour prior to my scheduled appointment with The Doctor. Even her fellow was amazing.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Anyway...for the most part, my visit was a bit anti-climatic. I guess I expected to walk in the door and have the answer to my prayers presented to me on a silver platter. Ha. If only it worked that way. It turns out that they DID have a clinical trial in mind for me, but after reviewing my history, I don't qualify for it because of my need to take the awful prednisone for my eyes. This prednisone crap is, unfortunately, going to keep me from being eligible for a lot of studies. I am, however, to receive a call next week from the study coordinator at Hopkins with a list of possible studies for me to consider.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">In addition to these studies, I can also consider another standard treatment option that I haven't tried yet, as well as, waiting it out awhile to see if the drug I am currently taking is doing anything to improve my condition. We are also working on getting a similar consultation with someone at NIH and NCI. The choice is mine what to do next and there doesn't seem to be a clear-cut correct path to choose, so I have a lot to think about. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Regardless of the anti-climatic outcome of my Hopkins visit, I do feel like I accomplished a few things during my time there:</div><ol><li style="font-family: Georgia,"Times New Roman",serif;">I learned a little more about cancer and cervical cancer. I knew this on some level before, but I now have been reassured that the reason I can't find more information about stage IV cervical cancer anywhere is because it's just not that common. Most people are free and clear after treatment during an earlier stage and very rarely does it recur. I am just one of those "special" people, I guess. Because of this, there also aren't a lot of studies specific to late-stage cervical cancer and/or a lot of clinical information about what does and doesn't work for late-stage cervical cancer patients. That being said, even with cancers that do have a lot of clinical data to support specific treatments, patients are all still different and unique and what works for one person may not work for the next. There is no one right answer for anyone. Bummer.</li>
<li style="font-family: Georgia,"Times New Roman",serif;">I am not necessarily as close to death as I sometimes think I am. After my last scan, I have had some pretty low moments...thinking about if I will be here for my birthday, for my next new car purchase (I had a small breakdown at the Mazda dealership during the purchase of my husband's new car), to work outside the home again, etc. During my visit, they asked me how "active" I am and I was like...oh, not very. I sleep a lot and if I walk it is with the dog to the end of the block and back, etc. And then they said, "but are you able to do things around the house for yourself, like cook and clean?" Oh yes!! Though my husband may argue with the second point. LOL. I still lead a "pretty normal" life. I do sleep a lot more. And you won't find me training for a marathon or even a 5K anytime soon. I can't stand in one place for very long or do heavy duty yard work. But, I am certainly doing a lot better than I could be. Not to mention...I am showing no signs of my liver falling apart anytime soon. The Doctor and her fellow gave me the impression that I am doing pretty well. I am not a lost cause. It's not time to dial up hospice. I think I sometimes compare myself to my pre-cancer, pre-prednisone self and I am nowhere near that girl right now. I don't know if this is the pressure that I am placing on myself or the fact that I know there are folks (friends and otherwise) out there that just don't get it. That don't get why I can't just up and eat right and exercise hard and get better. I don't get it either. It just doesn't work that way with cancer, I guess.</li>
<li style="font-family: Georgia,"Times New Roman",serif;">I think when I started writing this, I had a third thing to say, but I've forgotten it already. LOL. This happens a lot. But, I know it also happens to my other same-age friends too, cancer or no cancer...we are aging folks! Ha ha. OH!! I remember!! My liver! I got to see the images of my liver. I never got to see this before. They showed me the liver mass and my entire liver. The mass is not "small" anymore, but The Doctor said it is in a "good location" and well...we all could see that there is still a lot more healthy liver tissue than sick liver tissue and this made me very pleased. </li>
</ol><div style="font-family: Georgia,"Times New Roman",serif;">So....there is more that I want to say, but I think this is enough for now. I will save it up for another post. For now, thank you all so so so much for your thoughts and prayers and encouragement. Please know that I consider you all my companions and co-survivors on this journey and this journey ain't over yet! Let's wash our clothes, reorganize and repack our luggage and keep truckin' on. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Love you,</div><span style="font-family: Georgia,"Times New Roman",serif;">Vashni</span><br />
<ol></ol>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-79062456361677591042012-04-10T18:25:00.000-04:002012-04-10T18:25:44.371-04:00The Latest Scoop<div style="font-family: Georgia,"Times New Roman",serif;">So...as some of you may have gathered from my posts on The Facebook...the roller coaster ride continues. As I mentioned in my last <a href="http://steppinglightwiththeflow.blogspot.com/2012/03/quick-lil-update.html" target="_blank">Quick Lil Update</a>, I had a CT scan last week. Thursday, to be exact. And I also met with my oncologist Thursday afternoon to get the results. Quick turnaround was nice. Not having much time to think and stress about it was nice. I was feeling pretty confident (possibly because I didn't have much time to think and stress about it. Ha). But, that jolly confident mood was quickly replaced by shock and denial once I saw the face of my oncologist as he walked in the door.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">"It's not working," he said, shaking his head with his lips tightly pursed in the way he always does when he delivers bad news. The tumors and affected lymph nodes all increased in size this time. In fact, the liver masses doubled in size. In one month. Yeeks! This is not the news that I wanted or expected to hear...though it does make sense as to why my pain has increased so much in the last month. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">My oncologist doubled my pain medicine, prescribed me tamoxifen tablets (one of the drugs shown to work for me on my targeted study), and fired off an email to his colleague at Johns Hopkins. He has been consulting with her about my case for the past few months. She is in the loop. She is an expert in gynecological cancers. I have heard her name and her expertise and her loveliness mentioned in my support group meetings. I am psyched that she has been/will be involved in my care.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">By Friday afternoon, I got a call from my oncologist's office asking for my permission to be contacted by Johns Hopkins as there were several treatment options that they felt would be a good match for me. By Monday afternoon, I had a consultation scheduled with The Doctor and from the sounds of it an idea of a clinical trial for me. PSYCHED. Doin' a little dance.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">I was/am, admittedly anxious about it in some ways...like the fact that my cancer has progressed far enough to be considered for a clinical trial and the fact that so many things so far have not worked and the fact that...those liver masses...1 month! Ack. But, the more I read about clinical trials and this doctor, the more confident and excited I get. This is definitely a good thing.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">So, that is where I am at now. I meet with The Doctor at Hopkins tomorrow afternoon. My pain meds were doubled and I am almost feeling fine. I had a blood transfusion yesterday and all that juicy blood is really giving me a boost. Time to sit back, relax, let go and let God...</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">OH...speaking of God...one more little thing that has me totally jazzed right now...a close family friend approached me on Sunday and said that his pastor, who apparently follows my blog (or was at least introduced to the <a href="http://steppinglightwiththeflow.blogspot.com/2012/04/what-money-cant-buy.html" target="_blank">mega millions entry</a> I posted last Monday), would like to use that blog entry as part of his sermon. He was requesting my permission. Holy cow!! I am like...beyond honored to have someone want to share my writing with others. Jazz hands! Happy dance. So cool!</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">That is all for now. I shall report back after I meet with The Doctor at Johns Hopkins tomorrow.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Peace and love and all that jazz to you,</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;">Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-52792889403383823222012-04-03T12:53:00.000-04:002012-04-03T12:53:30.489-04:00What Money Can't Buy<div style="font-family: Georgia,"Times New Roman",serif;">This past weekend, many of my friends and the entire world of The Facebook and The Twitter were a-buzz with comments about what they would do if they won the $640 million Mega Millions jackpot. From lavish vacations to larger homes to charities, etc. And so, I started thinking about what I would do with such a windfall...and it struck me kind of hard, like a slap in the face kind of hard, that instead of feeling gleeful excitement over the extravagant possibilities, I found myself overcome with a deep sadness. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">The thing is...no matter how much money I have...it would never be enough to buy me (or anyone else for that matter) pure natural juicy health. No amount of money in the world would render me cancer-free. No millions upon millions of dollar bills would bring back those we have lost to cancer and other diseases. I think it was the first time in my life that I realized that money can only do so much.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Don't get me wrong. Financially, my husband and I are comfortable. We don't live extravagantly. We don't own fancy things. We don't own a big mansion (especially in the DC suburbs). But, we have good health insurance. We can pay our bills. And we can splurge from time to time when we need/want to. But, I DO realize that there are many many people out there that are battling cancer that do not have the same financial resources to get the quality health care that they need and a lottery win WOULD prove beneficial in their fight for health and wellness. But, even in that case...money can only do so much.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Thankfully, in addition to modest financial security, I have immeasurable (BEYOND IMMEASURABLE) emotional support. THAT cannot be bought or lotter-ied off. THAT is priceless as well. I thank God everyday for the things that are priceless in life that I can say I have....love, hope, faith, friendship, family, hugs, smiles, cherry blossoms, dog kisses. I could go on and on. I don't need $640 million to access these things. They are here for me anytime I need them. Well, maybe not cherry blossoms, but you get the point.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;">Anyway...for perhaps the first time in my life...I had a dramatic shift in my perspective on money. For most of my life...I was of the mindset that there was never enough money and I wanted more, more, more. Now, I realize that more money doesn't equate to perfection and sheer happiness. I mean...there are a lot of material things I wouldn't mind having...and I think that a lavish vacation of any kind would do wonders to restore my sense of well-being...but in the end, money can't buy the things that really matter most. And I am grateful that I truly, deep down, "get that" now. </span><br />
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</div><div style="font-family: Georgia,"Times New Roman",serif;">Faith, Hope and Love to you,</div><span style="font-family: Georgia,"Times New Roman",serif;">Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-26101553974444684912012-03-28T16:09:00.000-04:002012-03-28T16:09:01.431-04:00Quick Lil Update<div style="font-family: Georgia,"Times New Roman",serif;">Quick little update: (Yeah right...I never seem to make my blogs quick).</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">To add to that...Monday, we received the results of the <a href="http://steppinglightwiththeflow.blogspot.com/2012/03/time.html" target="_blank">"targeted study"</a>. 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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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.)</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">Love to you, Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-56816145649282403782012-03-26T08:54:00.000-04:002012-03-26T08:54:59.564-04:00For Steph...<span style="font-family: Georgia,"Times New Roman",serif;">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.</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Battling cancer, especially a stage IV cancer, can be a very solitary experience. </span><span style="font-family: Georgia,"Times New Roman",serif;">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.</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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?!</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">I used to keep another blog called <a href="http://vashni34x365.blogspot.com/" target="_blank">Vashni's 34x365</a>. I started it on my 34th birthday in 2007. An attempt to </span><span><span style="font-family: Georgia,"Times New Roman",serif;">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. </span></span><br />
<blockquote class="tr_bq"><div class="separator" style="clear: both; text-align: center;"><a href="http://1.bp.blogspot.com/-xZi4DlzOwe8/T3BVjUmBCDI/AAAAAAAAAQk/nMeL-7tf1mw/s1600/StephandVash.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="145" src="http://1.bp.blogspot.com/-xZi4DlzOwe8/T3BVjUmBCDI/AAAAAAAAAQk/nMeL-7tf1mw/s200/StephandVash.jpg" width="200" /></a></div><span style="font-family: Georgia,"Times New Roman",serif;">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!"</span><span><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-family: Georgia,"Times New Roman",serif;"> </span></span></span></blockquote><span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
<div style="font-family: Georgia,"Times New Roman",serif;"> </div><span style="font-family: Georgia,"Times New Roman",serif;"> *sidenote: I actually thought about the above "rectum" quote (which I believe actually originated from someone else in the Leonards clan) during my </span><a href="http://steppinglightwiththeflow.blogspot.com/2012/03/traumatized.html" style="font-family: Georgia,"Times New Roman",serif;" target="_blank">Near-Death Straining Incident</a><span style="font-family: Georgia,"Times New Roman",serif;">.</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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.</span><br />
<blockquote class="tr_bq" style="font-family: Georgia,"Times New Roman",serif;"> “The first time her laughter unfurled its wings in the wind, we knew that the world would never be the same” ― Brian Andreas </blockquote><span style="font-family: Georgia,"Times New Roman",serif;">Miss you, Stepha-NIE!! Today and always. </span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni</span><br />
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</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com1tag:blogger.com,1999:blog-7367634441601219306.post-28362667121200668952012-03-19T16:38:00.000-04:002012-03-19T16:38:20.161-04:00Traumatized<div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-family: Georgia,"Times New Roman",serif; font-size: small;">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</span><span style="font-family: Georgia,"Times New Roman",serif; font-size: small;">, so what the heck...why not!? </span>(She says with a little reservation...will I come to regret this later?)</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Now that I have completely piqued your interest (I hope I don't disappoint you). Ha.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;"><span style="font-family: Georgia,"Times New Roman",serif;">So...last I posted, I was going to be working to stay on a narcotic schedule. I did. For like 2 1/2 day</span>s. 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?</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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". </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Obviously, I didn't die. I, in fact, lived to tell this gruesome story. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">*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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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!</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Ah...the trials and tribulations. Sigh.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">Thanks for letting me share. May you all have a beautiful bowel movement in my honor today. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com4tag:blogger.com,1999:blog-7367634441601219306.post-86251580172248435032012-03-15T15:53:00.000-04:002012-03-15T15:53:09.693-04:00Hugs, Hair, and Hurts<div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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) </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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?! </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
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....</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;">Peace. Love, Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-46580000159649504742012-03-08T18:45:00.000-05:002012-03-08T18:45:01.476-05:00Second Verse...Same as the First<span style="font-family: Georgia,"Times New Roman",serif;">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). </span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">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.</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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?</span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">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. <span style="font-family: Georgia,"Times New Roman",serif;">I was here for another THREE hours before they started my procedure. </span></span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">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. <span style="font-family: Georgia,"Times New Roman",serif;">I sat and I waited. I answered my medical history questions. I played with my iPhone.</span> Dear Lord!</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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.</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">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 neg<span style="font-family: Georgia,"Times New Roman",serif;">ative 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. </span></span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">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?</span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">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 </span><span style="font-family: Georgia,"Times New Roman",serif;">deal with some crisis or drama demanding attention and focus. </span><span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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</div><div style="font-family: Georgia,"Times New Roman",serif;">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!</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">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!!</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni </span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0tag:blogger.com,1999:blog-7367634441601219306.post-28116561308907654182012-03-05T17:37:00.000-05:002012-03-05T17:37:49.292-05:00Mid-Night Brain Rumbles<div style="font-family: Georgia,"Times New Roman",serif;">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.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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. </div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif;">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.</div><div style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;">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. </span><br />
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</div><span style="font-family: Georgia,"Times New Roman",serif;">Have a great night, y'all!!</span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;">Love, Vashni</span>Vashnihttp://www.blogger.com/profile/06784308231027425964noreply@blogger.com0