Tuesday, May 22, 2012

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

Hello Blogosphere,

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

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

I get a lot of "you are amazing" and "you are an inspiration", etc. And, don't get me wrong...I love it. I'm not gonna lie. Ha ha. You can keep saying those things to me all you want! LOL. But, at the same time, I need you to know that I honestly don't think I am doing anything that any one of you wouldn't do in the same situation. I am pretty sure that anyone who has ever been diagnosed with cancer has been devastated at the news. "Cancer (even though it no longer needs to be) is often synonymous with "death". So, when a doctor says "you have cancer", I think it's pretty common that your first thought may be "I'm dying". And not just "I'm dying", but "I am going to die a long slow and painful death". Good times. But, even though those thoughts and feelings may stick around for awhile  or come and 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.

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

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

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

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

The best part of my visit to NIH yesterday was when the attending physician reviewing my case explained to me that...while I have tried 3 (tecnically 4) lines of chemotherapy with no luck and I have a medium-sized liver tumor...most of the patients in the study have tried 6 or 7 lines of chemotherapy with no luck and have larger, more difficult to treat tumors. I said to her "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.

Love, Vashni

Tuesday, May 8, 2012

Yesterday Was Kind of a Bitch to Me

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

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

At the clinic, I got my port accessed, blood drawn for a blood glucose test (for the PET scan), and was sent on my merry way back to the radiology section of the hosptial for my MRI. When I arrived, I was advised I was too early to even sign in. Hmph. I took a seat and watched my already waning mood spiral down even more. You see...a) I was in pain. (Based on my CT scans, the pain I am having seems to be coming from two spots in my pelvis that are not cancerous. They are called lymphoceles or lymphatic cysts. I have one on the left and one on the right and they are most likely the result of lymphatic fluid collecting in the space where I used to have lymph nodes before they were removed during my surgery in 2008). It's a relief to know that the pain is something benign, but 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.

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

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

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

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

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

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

Anyway...I was pretty devastated at this news. I guess my body is, in a way, helping to make the decision of what to do next. So, right 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.

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

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

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

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


Sunday, May 6, 2012

My Novel about NIH

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.

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).

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

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. 

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. 

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.

Thank you!!!!!!! Love, Vashni