A Lot of Catching Up to Do…..

It’s hard to believe it has been two months since my last post.  Sorry for keeping so many of you in the dark.  It’s been a whirlwind of activity and emotional preoccupation and I haven’t had either a spare second or the energy to write down everything that has happened until now.  Let’s see if I can bring everyone up to date.

Looking back at my last post, I can’t even believe everything that has happened since October.  I left you last having told you all about my scans not coming back clean with regard to my lungs.  I did hear back from my former endocrinologist, Dr. Sullivan (I say former….I’ll get to that shortly) or I called her, I can’t remember.  At any rate, Jeremy and I met with her and the short version of that story is that her plan of action was simply to schedule me for another round of RAI (radioactive iodine).  I had been doing quite a bit of research after I found out about my Tg (thyroglobulin) levels increasing and I had found a number of medical journal articles regarding metastasized/advanced thyroid cancer and there was some debate about the benefits of using PET-CT scanning vs. MRI scanning and possibly bone scanning to really get the best view of the cancer and exactly where it is and how extensive.  RAI scans don’t necessarily provide an accurate picture of the cancer because they only show disease that is actively taking up iodine, as a true thyroid cell would.  However, that’s only useful for imaging what’s called well-differentiated thyroid cancer.  Often times, thyroid cancer cells morph into less well-differentiated (nondifferentiated) thyroid cancer cells, meaning they are less and less like actual thyroid cells and may or may not behave similarly (i.e. may or may not take up iodine).  Neither Jeremy nor I were happy with Dr. Sullivan’s answers to my many, many questions pertaining to the research I had done.  She did agree to schedule me for a PET-CT, but Jeremy and I reached a point where we felt that a second and potentially third (or more) 0pinion was necessary.

The research I found pointed me in two directions: Memorial Sloan-Kettering in NYC and another doctor in the same practice as Dr. Sullivan, Dr. Jason Wexler.  Memorial Sloan-Kettering wound up being a dead end at that time.  The doctors that I particularly had an interest in consulting with, who are known for their expertise in advanced thyroid cancer, weren’t accepting new patients.  Dr. Wexler, at Washington Hospital Center, was also a hard man to get ahold of.  After I tried calling and leaving messages multiple times, the Miracle Worker (aka Jeremy) managed to get me an appointment with him the following Monday!  (I really don’t know how I would get through life without this man….)

After meeting with Dr. Wexler, Jeremy and I were both in agreement that this was the doctor we wanted to stick with.  Meeting with him confirmed the impression of him that I had gotten from reading his article on metastasized thyroid cancer.  He was our guy.  He agreed with the PET-CT scan that I had already scheduled and another round of dosimetry (calculating the maximum amount of RAI that I could receive without damaging my bone marrow), as well as a brain MRI to rule out brain or bone metastases and a neck ultrasound to confirm that there were no additional suspicious lymph nodes in my neck.  He also scheduled me for a pulmonary function test, since I have been having more trouble breathing over the course of the last year, especially when I exert myself physically (yep, I am still pushing myself and going to the gym 4 days a week — I’ve only missed a couple of workouts).  Dr. Wexler also volunteered to present my case to the weekly Thyroid Tumor Board meeting held at WHC, which is composed of various oncologists, endocrinologists, radiation oncologists, nuclear medicine physicians, etc.  They meet weekly to discuss new research, complex cases, and the like and get consensus on the best course of action in cases that aren’t cut and dry (like mine).  He was very thorough and spent nearly two hours talking to us and answering my questions.

The earliest I could get scheduled for dosimetry and treatment was the week of December 9…..which wound up working out just fine, since I was still going to classes during this time (finals were scheduled to finish on December 11).  It made me nervous to wait what seemed like a long time to get the treatment, but Dr. Wexler assured us that this wouldn’t have a negative impact whatsoever.  In the meantime, my dad’s “thyroid guy” suggested seeing a doctor at John’s Hopkins, so Jeremy and I trekked up to Baltimore to meet with Dr. Ball, who is also one of the top thyroid cancer experts in the country.  He didn’t have all of my information in front of him, but from what he had access to, he agreed with what Dr. Wexler had told us.  He mentioned that he works with doctors at WHC on complex cases and that he would be happy to provide a second consult on my case in association with Dr. Wexler.

The beginning and middle of November was a whirlwind of medical tests, work, school, exams, and various appointments.  Fortunately, my neck ultrasound confirmed what the RAI one year scan had suggested — no more tumors or suspicious masses in my neck or thyroid bed.  Yes!!! Good news!!!  The pulmonary function test also showed normal lung function, so my trouble breathing is likely just a slow process of adjusting to the new scar tissue in my lungs and reduced function from what I am used to, rather than significant functional impairment.  (No more marathons for me, I guess!)  And my brain MRI was clean, other than a benign cyst on my pineal gland, which is apparently pretty common and not something to be concerned about.

The PET-CT wasn’t great news, on the other hand.  Although I am lucky that there wasn’t a significant size increase in any of the tumors in my lungs (the largest went from 5mm to 6mm), there was still just as much activity evidenced on the PET-CT (maybe more, I’m not entirely sure) as the one I had done last year, prior to being treated with RAI.  The next step was to complete the dosimetry and see what my maximum RAI dose would be calculated at and move forward with another round of treatment.

So between the end of October and the beginning of December, I completed all of my medical tests and started the low iodine diet again the Monday BEFORE Thanksgiving…..meaning Jeremy and I stayed home for the holiday.  With so many dietary restrictions, there was no way to go anywhere to anyone else’s for the holiday.  No dairy, no egg yolks, no soy, no sea salt, no seafood, no regular salt…..etc, etc, ad nauseum.  I know none of you doubted my skills at all, but I managed to make an awesome (if I do say so myself) Thanksgiving feast, complete with oven roasted turkey with an apple cider bourbon glaze and homemade turkey gravy, sweet potato casserole with homemade candied pecans, garlic smashed potatoes, pumpkin fritters with homemade bourbon caramel sauce, honey skillet cornbread (my one EPIC fail of the day), apple pie, pumpkin pie, and pumpkin snickerdoodles.  Aliza wound up joining us, as she had JUST gotten back from Israel the day before.  So it was a really nice, quiet Thanksgiving with an obscene amount of food.  (And in case you were wondering, my “butter” substitute was an organic palm oil shortening that I discovered…..since Crisco has SOY in it!!!)

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Thanksgiving Spread — a la Low Iodine Diet

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I even tried my hand at weaving the pie crust for my apple pie!

Yes, I know, when did I have time to do all of this?!?  And with what energy?!?  I honestly couldn’t tell you.  I also had to study for my Anatomy & Physiology Lab and Lecture final exams and my Medical Terminology (online) final exam.  Cooking was therapeutic…..either that or an outlet for my manic energy at that point.  Nerves.  I blame it on the nerves.  Either way, it had a really nice end result, don’t you think?

So, then I focused all that nervous energy on studying for my exams.  Which wasn’t all that hard, really.  I loved my A&P class…..the professor was awesome and really made the class come alive.  It never felt like sitting in a lecture.  He always had real-life stories about what we were learning about.  So a lot of the information had already stuck before I even went back to review it.  Plus, so much of the stuff I was learning in class was (unfortunately) coming alive for me in my own health issues, so I really had a reason to learn it all.

This is when I got the best news I have gotten in the last 3 months.  I had my A&P Lab Practical scheduled for the Wednesday after Thanksgiving, with my treatments AND my lecture exam starting the Monday after that.  (I take after my mother….I don’t know the meaning of overprogramming.)  So I went in on that Wednesday to take my Lab Practical and….I have to tell the whole story.  My professor, Dr. N, asked everyone to have a seat in the pre-lab area so that he could tell us a story before beginning the exam.  When he was in his second year of college, he had signed up for a very challenging series of science-heavy coursework.  At that time, there were year-long courses with end-of-year cumulative exams.  Dr. N had worked like crazy the whole year to achieve as close to a 4.0 as possible.  He made it through the year and got all the way up to the week before finals and wasn’t sure how to succeed at all of the exams for his challenging courses.  In the last physics class before the final exam, the professor went over all of the course material that was expected for the exam.  Thinking that he would have to “punt” this exam so that he could do well in all of the others, my professor said that his physics professor had one more thing to say before letting everyone go.  In this class of around 100 students, the professor had a practice of exempting the top 5 students from taking the final.  My professor was praying HARD to hear his name in that top 5.  The physics professor called the first name, then the second, then the third and then the fourth name.  And lo and behold, the fifth name called was my professor’s name.  He called that his “ah hah” moment….when he knew he was headed in the right direction and he could achieve his goal of being Doctor.  My professor, Dr. N, followed up that story by saying he doesn’t remember that professor’s name, although he should.  But the vividly remembers how he looked and how great of an impact that moment had on him.  Our class was significantly smaller, less than 20 students.  And he said there were a number of As in the class and quite a few students with promising futures in the medical field.  But one student “brought it” each and every class, each and every quiz, each and every exam.  And so he announced MY name as being the one student exempt from taking the final lecture exam.

There’s no way to express to you what a gift that was to me at that moment.  I could have easily taken the exam.  I would have aced it, just like I did all of the others, because I loved the class and the material and I think I finally just figured out what I was born to do.  But that news was just the one ray of sunshine in what was a very dark few months that literally made my insides smile and gave me hope again.  (So, if you’re reading this Dr. N, thank you.  You gave me my very own “ah hah” moment.) (And I did still have to take my Medical Terminology final…. 😛 )

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the highlight of the last few months 🙂

The following Monday I went in for the start of my dosimetry week.  Basically I had two days of Thyrogen injections (artificially stimulating my TSH so that I didn’t have to withdraw my thyroid hormones and feel awful for weeks), then another mini RAI dose, and then daily scans for 6 days.  Jeremy’s idea of fun at those injection appointments was flicking me in the arm, repeatedly, immediately prior to the nurse giving me my Thyrogen injections, resulting in numerous bright red welts up and down my arm.  He was immensely pleased when the poor, confused nurse asked what had happened to my arm.  He’s lucky that hospital security didn’t come over to ask what was going on…. 😛

The morning that I went in for my mini RAI dose (Wednesday the 11th of December) I managed to drag myself out of bed early and make this pasta sauce that I had been hoping to have time for.  Without store bought sauces and dips, food is boring and bland on the low iodine diet.  It’s hard to eat.  About the only thing that tasted any good by this point was bananas in my homemade honey macadamia peanut butter.  You can’t live on that.  (Well, if you must know, you CAN live on that for a few days…..but then you run out of ANYTHING to eat because you’ve just rendered those foods inedible, too.  I think it must be mostly psychological.)

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homemade garlic and red pepper pasta sauce

This year I was brave enough to ask if I could take more pictures of my treatments and pills and machines.  The nuclear medicine techs are all AMAZING at WHC and let me take pictures of whatever I wanted.  So, in case you were wondering, this is the protective case that my personally-formulated I-131 pill came in that day:

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The radiation-proof container for my mini dose (changing my name at the hospital is a never-ending project in progress)

And this is the pill.  Amazing that this little thing makes you radioactive.  It’s about the same size (maybe identical) to the massive dose that I got last year.  Looks like a probiotic.  Makes you toxic to other living creatures (and yourself, really).  This time I only had 2mCi.  Just enough to test where it went in my body and how quickly I expelled the radioactive material.

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2mCi I-131 (radioactive iodine)

So, for 2 days (48 hours) I was radioactive again, sleeping by myself, using my own bathroom, and trying to touch as little as possible.  It’s not nearly as bad or dangerous as after the full dose (last year I had 250mCi……100 times the dose I had for this round of dosimetry), but I don’t need to be damaging Jeremy’s thyroid (or the dog or cats…..).  So, Jeremy was my personal chef for 2 days and those were the best 2 days of food I had the entire time I was on the diet!

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My wonderful, amazing chef 🙂

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Pasta with homemade garlic and red pepper pasta sauce with ground turkey and scallion and heirloom tomato garnish

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ground turkey salad with Jeremy’s homemade “fire salsa” and heirloom tomatoes

Starting on the Wednesday that I took the RAI pill, I became besties with the E-Cam again.  I spent 2 hours in this machine a couple of hours after I took the pill and then 20 minutes the next day, 4 hours in this machine (and 2 other similar machines) on Friday, then 20 minutes on Saturday, nothing on Sunday and 20 minutes on Monday.  Most of the days the scans were just to get a reading of how much radioactivity I was emitting after however many hours had passed.  By Saturday I was almost down to normal radioactive “background noise” that everyone emits naturally.  Which is good and bad.  Good because it means my kidneys function great (YES!!!  Something works!!!), but bad because it means that it wasn’t “sticking” anywhere in my body.  Friday was a long day of scans to actually take images of where the iodine was concentrated and how much.

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my friend, the E-Cam……we have spent a lot of quality time together in the last year

During my week of dosimetry, I spent a lot of time talking to and emailing back and forth with Dr. Wexler regarding my treatment plans.  Apparently, Dr. Ball at Johns Hopkins was true to his word and was keeping in close touch with Dr. Wexler regarding my case.  There was some discussion going on between them about the possibility of me benefiting from postponing my treatment and waiting to get into a clinical trial.  There are a number of clinical trials coming up testing drugs that are showing promise at increasing the uptake of iodine in thyroid cancer cells.  One of the trials that is ongoing currently is specifically targeting a mutated gene present in some thyroid cancers, called a BRAF mutation.  So a number of weeks ago, samples of my tumor were sent out to be tested for this mutation.  Unfortunately or fortunately, my tumors didn’t have that gene mutation, so I didn’t qualify for that trial.  However, there are some other clinical trials that are scheduled to start sometime in the next 6 to 12 months that don’t require that genetic mutation in the tumors.  The short version of the story is that there wasn’t any definitive agreement as to whether I could afford to wait that long to get into a trial.  That changed.

I completed my dosimetry scans on Monday, December 16.  On Tuesday, I spoke with Dr. Wexler regarding the results.  He had been in contact with Dr. Ball and had also already presented my results to the Thyroid Tumor Board and the general consensus had been that the benefits of treating me at this time would not outweigh the risks.  Basically, the dosimetry scans had showed very minimal uptake of the RAI in my lung tumors.  In addition, my maximum dose of RAI had been calculated at 900mCi.  This means that my body expelled the radioactive material at a very fast rate.  There could be two possible explanations for this.  Either my tumors aren’t taking up much of the radioactive iodine or they are taking it up but expelling it almost immediately.  In either case, no matter how high of a dose of the RAI I am given, there isn’t a very good chance based on the dosimetry scans, that my tumors will get enough exposure to the radioactive material to have any impact on them and the high dose of radiation will likely damage healthy organs.  All of the doctors involved in reviewing my case agreed that I wouldn’t get any benefit out of treatment and so my treatment, scheduled for December 27, should be cancelled.

So where does this leave us?  Dr. Wexler believes that at this moment the best we can do is watch and wait.  Most clinical trials require at least one tumor to have a diameter of 1cm or larger in order to qualify for the trial.  My largest tumor currently measures 6mm.  So right now the plan is to watch and wait.  Perhaps my cancer will be very slow growing or “stable disease” (meaning it stays about the same).  Or, if it grows, then there will hopefully be room for me to get into one of the clinical trials for drugs that increase the uptake of radioactive iodine.

My dad and another excellent doctor friend of his are inquiring from Dr. Wexler about the possibility of getting a few biopsies of my lung tumors, to verify that the lung tumors are the same type of cancer as what was found in my neck.  But I don’t know yet whether or not that will happen.

So, for now, we are trying to put this aside and try to go back to life as “normal” as possible.  I’ll be going in for follow up bloodwork periodically and in 6 months I’ll have a chest x-ray to see if there has been any change in the lung tumors.  But not much else can be done right now aside from that.

Thank you all for checking in on us periodically.  We really appreciate it.

We hope you all have a happy, healthy holiday season and a very happy new year!

Love,

Keren & Jeremy

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This entry was posted on December 22, 2013. 9 Comments

A Long Road Ahead

It’s been a long and emotional three weeks.  After two weeks on the low iodine diet, the week of testing and scanning began this past Monday.  I had the first of two Thyrogen shots and a bunch of bloodwork done on Monday afternoon and then I had to take a lab exam that evening for my Anatomy & Physiology class.  Tuesday was Thyrogen shot number 2.  And Wednesday was my low dose (4mCi) of radioactive iodine, during which time I had to follow the standard radiation safety precautions, like last year, only for 2-4 days this time.  Because I was radioactive, I couldn’t go to class on Wednesday night, so my wonderfully sweet husband went to class for me and recorded most of it and took what notes he could.  He’s such a wonderful husband…

 

I stayed in the Master bedroom suite for the rest of Wednesday through Friday morning, when we went back to Washington Hospital Center for the 4th day last week.   Scanning started at 9:30am, where I had a 20 minute “pinhole” scan (my neck only), a 20 minute chest scan and an hour and 15 minute full body scan.  I went back out to the waiting room and called Jeremy back to the nuclear medicine suite (he was wandering around to kill time).  We waited for the nuclear medicine physician to review my scan results and determine if any other scans were needed.  The techs came back out to get me saying that the doctor requested some additional chest scans (not a good sign…).

 

I had another 40 minute scan of my chest, this time in a machine that I remember from last year that has rotating scan plates and if you close your eyes, you never know where it will be when you reopen them.  At one point I closed my eyes and when I reopened them one of the scan plates was right in front of my face.  I was never actually able to fall asleep this time….too many nerves.

 

After my scan it didn’t take very long to be called back to see the physician (this time the Director of Nuclear Endocrinology).  She showed us comparisons of all of last year’s results along with this year’s.  It’s not a direct comparison because there was a low dose I-123 scan and then the post therapy scan with the HUGE dose of I-131 and this year was a low dose of the I-131.  But basically, what it boiled down to was that my neck looks ‘clean’ (the good news), but the cancer has grown pretty significantly in my lungs.  Which we kind of knew was coming, because of the increase in my thyroglobulin level, but it still felt like a kick in the gut.

 

Unfortunately, we don’t know anything else at this point because it was Friday afternoon and my endocrinologist may or may not have gotten the report before the end of the day.  This week we will be following up with her and looking for consultations with other endocrinologists with more experience with thyroid cancer with metastases.  I’ll most likely have additional PET scans and/or MRIs or bone scans coming up, followed by another round of dosimetry (where they calculate a new maximum dose of radioactive iodine to kill the cancer without killing my bone marrow) and potentially other radiation treatments and/or chemotherapy depending on the results of the next RAI treatment.

 

For the moment, I am off of the low iodine diet, but I will have to go back on it shortly in order to prepare for the next round of treatments.   There will be a lot of additional stuff going on in the next few weeks, so as I have time and energy I will keep everyone posted.

 

Your thoughts and prayers would certainly be much appreciated in the coming months.

 

Love to all,

Keren & Jeremy

This entry was posted on October 20, 2013. 8 Comments

A Year Later…

It’s hard to believe it has been a year already since my radioactive iodine treatment.  A lot has happened this past year, both good and bad.  Jeremy and I got married (GOOD!!!) and I got to add Celiac disease and Lupus to my ever-growing list of heath issues (BAD!).  I’ve done a LOT of research and apparently where there’s one autoimmune disease, there are often many.  I’m up to three so far, but I’ve read a lot of forum posts where people have five or more, so I’m counting myself lucky.  I also started taking some night classes…right now I’m deep in the thick of Anatomy & Physiology, which is challenging but I love it!!!  I’m learning so much about things that I can apply to my own health and it’s really been great.

I’m a bit behind in updating this blog, so I’m already deep into the thick of the low iodine diet again in preparation for my one year follow up scans.  Things have been a bit crazy around here.  I had my one year bloodwork last week and, unfortunately, the numbers weren’t what we were hoping for.  I mentioned last year that we were going to be watching for my thyroglobulin level to be declining (ideally) or at least staying static.  My latest bloodwork showed an increase in my thyroglobulin  levels.  Not a great sign.  We’re waiting to see the results of my one year scan, but increased thyroglobulin levels indicate remnant or growing thyroid cancer.  So, odds are good that I’ll end up with an additional RAI treatment or some combination of treatments.  I have very little information beyond that at this point.

My next step is the week of RAI scanning in a couple of weeks.  I have to be on the low iodine diet again for two weeks prior to the scans (and the week of), which I started yesterday.  My list of “do not eat”s is much longer than my list of allowable foods, especially where protein is concerned.  I can’t have dairy, sea food (or anything that came out of the water), egg yolks, iodized salt, sea salt, processed foods, red dye #3, soy or soy products, potato skins…you get the picture.  Plus, with the diagnosis of Celiac disease, I am also gluten free….so nothing with gluten, either. 😛  To cap things off, with the Federal government being furloughed indefinitely, I am stuck at home with no pay.  Thank goodness I still have my health coverage…  On the bright side of things, being furloughed means I have loooooots of time to work within my severely restricted diet to make some  really delicious meals for myself!  Today I had chocolate banana pancakes and scrambled egg whites, pumpkin oregano pasta with grilled chicken, “Mexican fried rice” with grilled steak, chocolate banana muffins (and more egg whites), and a “grilled” vegetable omelette with avocado. At least I can enjoy my food this week…

Gluten Free Pasta with Grilled Chicken in a Basil-Oregano Pumpkin Sauce

Gluten Free Pasta with Grilled Chicken in a Basil-Oregano Pumpkin Sauce

The week of my scans I’ll be busy going back and forth to and from Washington Hospital Center again.  Monday, Day 1 of the process, I get Thyrogen shot #1 (see my earlier posts about this).  Day 2, Tuesday, I get Thyrogen shot #2.  Wednesday I get my “miniature” scan dose of the 131-I (radioactive iodine).  The dosage amount is 4 mCi (milicuries)…while this is significantly less than my treatment dose of 250mCi, I will still be mildly radioactive and have to follow many safety precautions so that I don’t harm anyone else around me.  I can’t be within 3 feet of anyone for more than an hour for 2 days (4 days or more for pregnant women and young children) and I have to use a separate bathroom, paper plates, plastic utensils, separate bed, etc and all of my clothing and sheets will have to be washed very well and separately from anything else after my “radioactive period”.  I do nothing but sit by myself for 2 days and then I head back to the hospital on Friday for a half day of full body scans to get a picture of where any remaining, active thyroid tissue might be.  And then we’ll know more.

Until then, I’m just playing around with my weird diet and keeping my chin up.  I’ll keep everyone posted as I get more news.

Love to all,

Keren & Jeremy

This entry was posted on October 2, 2013. 10 Comments

The Road to Recovery

I am very happy to announce that this will be the last cancer journey related post for about a month!!  My appointments on Tuesday went very well and my appointment with the endocrinologist was rescheduled for next month, so hopefully we can move on to happier things for a while!
My post RAI scans on Tuesday were very much like my scans during the dosimetry after I received my mini dose of I-131.  A 20 minute chest/upper body scan, a 45 minute full body scan, and a 20 minute neck “pinhole” scan.  I was thankfully able to take a mini nap during the first 2 scans.  I was napped out for the third scan, though, and had a very hard time keeping still for that 20 minutes.  Thankfully, this time the doctors saw what they needed to see on the three scans and didn’t have to add additional scans this time around.  The doctor called me back pretty quickly and showed me the scan images on a wall of computer screens.  It’s actually pretty neat — it reminds me of a miniature version of NASA’s Mission Control room.  TONS of computer monitors and equipment going around the entire room.

I was able to follow what the doctor was saying from the scan results much better this time.  The images from the mini dose were very grainy and didn’t look like much to me, but this time I could see the areas of the concentrated radioactive iodine lit up like a Christmas tree on the images.  The scan results showed exactly what we were hoping they would show: a very high concentration of the I-131 in my neck and also in my lungs.  This means that chances are good that the cancer in my lungs was, in fact, Papillary Thyroid Cancer and took up the deadly radioactive iodine.

I got a better understanding this time of exactly how the radioactive iodine works.  It doesn’t actually kill the existing cancer cells.  It actually “kills” the ability of the cancer cells to replicate, so now it is a waiting game for the existing cancer cells to go through their life cycles and die off on their own, which should take place over the course of the next year or so.  My doctors will continually monitor levels of a protein in my blood called thyroglobulin.  Thyroglobulin is produced only by thyroid tissue, so as the remaining thyroid tissue, cancer included, dies off over the next year, my thyroglobulin levels should decrease.  As long as the numbers do decrease over the next year, we can be pretty comfortable that the treatment was successful and I can be considered in remission.  Obviously, if the thyroglobulin count stays the same or increases, that is a pretty strong sign that the radioactive iodine was not successful and that my thyroid cancer is resistant to the radioactive iodine.  However, all signs right now point to the treatment being right on target with what the doctors anticipated and we are moving in the right direction!

After meeting with the doctor, I waited to see the radiation safety tech, Hutch, who took care of me during my hospital stay.  He “scanned” me with the Geiger counter and explained in a bit more detail about normal “background” levels of radiation that you would expect to find on someone who had not been exposed to the I-131 (anything under 1) and at what numbers I would be “safe” to get closer to people (hugs, cuddles, etc.).  Anything under a 2 is considered safe for short term close exposure to others.  Thanks to my training coach, who had gotten me in the habit of drinking 4 or more liters of water per day, I had been effectively flushing my system and my overall reading in my “personal space” (with the Geiger counter practically touching me) was down to a 2 and my reading from 3 feet away was 0.8!!  When Hutch brought me back out to my mom in the waiting room and told her that I was cleared for hugs and cuddles she immediately grabbed me and started crying.  It was a very emotional moment for both of us.  It’s hard to describe what it is like to have to keep at least 3 feet of distance between yourself and those you love, especially for someone as “huggy” as I am….and my mom, too.  I have to wait a little while longer — until Friday — until I am fully able to go back to my normal routine (and I have a lot of cleaning to do to “disinfect” the areas I was using in the house), but I’m no longer a “prisoner” at home and can venture out into public again. 🙂

My endocrinologist also called me today to reschedule our appointment that was supposed to take place tomorrow.  Because it is so soon after my treatment, she didn’t think there would be enough change to make it worth another long trip to the hospital so soon, so I will see her again mid-November to discuss the next steps, get some more bloodwork done, possibly adjust my medications, and plan for next year’s follow up scans.  I’m only too happy not to have to make the drive in yet again so soon!!

Over the last few days I have received an overwhelming number of surprises in the mail from so many of you and I truly can’t thank you all enough.  Flowers, plants, chocolate covered fruit creations, cards, t-shirts, puzzles…  The love and support you all have shown me and Jeremy through the last few months has been truly awe-inspiring and I am so very grateful.

I have spent the last few days in a whirlwind of wedding planning activities with my mom and I am sure we will have a lot done by the time she heads home on Friday.  I’ve really started to enjoy the blogging process and with so many things going on in our lives these days, I may keep up with the writing and periodically update everyone on both cancer and non-cancer related topics.  Stay tuned for the next exciting update!! 🙂

Much love to everyone!!!

Keren & Jeremy

This entry was posted on October 18, 2012. 12 Comments

On the Other Side…

I have made it to the other side of my hospitalization and radiation treatment.  It was actually a relatively short hospital stay, but mentally and emotionally overwhelming.  I haven’t had the energy until now to tackle writing everything down.

Jeremy and I arrived at Washington Hospital Center at 11am on Thursday to check in with Admissions and get me settled into my room.  We came armed with 2 gallons of iced tea, 3 gallons of water, 3 liters of Vitamin Water, and and assortment of lemon sour candies, Jolly Ranchers, and Sour Patch Kids that I had picked through to find the low iodine flavors (nothing with red food coloring allowed!).  I was supposed to remain on the low iodine diet until I was released from the hospital.  The candies, sour candies in particular, were for me to suck on every 10 minutes to stimulate my salivary glands to empty.  The fluids were to get my body to continually flush throughout my stay.  Because the radioactive material is eliminated through body fluids, the idea is to constantly keep your system flushing in order to minimize any radiation damage to healthy organs.

It’s hard to see in the picture, but when we arrived at my room (in the oncology unit), every surface that I could conceivably touch was covered in either a waxy paper (a lot like a puppy pee pad) or non-vinyl rubber gloves taped to the surface.  I got all of my water, candies, and reading material situated and Jeremy waited with me for the nuclear medicine team to arrive.

my hospital room

my arsenal of fluids, candies, and reading materials

It didn’t take a very long time for the nuclear medicine team to arrive.  My tech, Hutch, made a very nerve-wracking, scary experience a bit less terrifying.  He was friendly, happy, and told me that it was his job to welcome me to my “Girl’s Spa Experience,” where I would have much needed R&R, lots of “spa treatments” (showers), and a mini-getaway.  It certainly didn’t feel like a spa weekend, but his attitude definitely helped settle my nerves a little bit.

When the nuclear medicine team showed up with my I-131 dose, Jeremy and I had to say goodbye.  Last hug and kiss for 8 days.  And not knowing when I would go home was scary, too.  I had a chance to talk to the nuclear medicine physicians and ask any last minute questions.  They also told me about my quarantine rules, explained my follow-up scans, which are scheduled for Tuesday, and went into a bit more detail about the follow up with regard to the cancer that was found in my lungs.  I’ll have a lung function test on Tuesday, in addition to my other scans, to determine whether the I-131 impacted my lung function due to the fibrosis of the dead cancer tissue that would occur.  That’s also assuming that the cancer in my lungs is Papillary Thyroid Cancer.  My scans on Tuesday should answer that question.  Although it’s most likely that the lung cancer is metastasized thyroid cancer, there is a chance that it is a different form of cancer and will not respond to the I-131 treatment.  That will be a whole different issue and result in starting from square one on the lung cancer.  But I’m not worrying about that right now.  I’ll know more on Tuesday.

It was about 1:30pm when I finally was administered the I-131.  This time, the lead canister housing my pills (2 of them, for a total dose of 250 mCi) was more like a construction worker’s lunch box, only much scarier looking.

the lead box my I-131 arrived in

the sign posted outside my door warning people of the danger of entering my room….which no one did

Once the lead container was opened and I was handed the vial with my I-131 pills, things got very boring.  My tech, Hutch, measured my initial level of radiation at 33 point something.  I have no clue what that means.  All I knew was that I was eligible for early release because I had access to a separate bedroom and bathroom at home.  Early release meant that my radiation levels had to fall below 14.  Standard release is a radiation level of under 7.  For the rest of my stay, I felt like I was the only person in the hospital the majority of the time, other than the occasional monitor wailing or cart going by my door.  I had to wait an hour and a half to drink anything or start sucking on the candies and 2 hours before I could eat.  I pulled out my magazines and read on my Kindle (I was able to bring my Kindle and iPhone, each enclosed in a Ziploc bag to protect them from radiation).

Then came the nonstop drinking, sucking on candies, and showers.  No way did I want to stay longer than I had to, so my goal was to shower every 2.5 hours and drink as much as possible.  By 8:30pm, I had made it through a gallon of water and a liter and a half of Vitamin Water, in addition to 3 showers.

As of 8:30pm Thursday…

I didn’t have a lot of confidence that my meals at the hospital actually were being prepared and delivered to me in accordance with the low iodine rules.  Check out my first clue at lunch (which I finally got to eat around 3:30pm):

low iodine?!?

I didn’t feel anything for the first 6 hours or so, but as the night wore on the prophylactic anti-nausea medication that I had been given wore off and I started feeling very ill.  I’m sure a lot of it was the radiation, but I’m pretty sure the candies and awful hospital food had something to do with it, too.  I couldn’t even get up to shower for a while, I was so sick.  I had to call the nurse and ask for another anti-nausea pill.  I rolled my bed tray to the door and moved back to the bed.  The nurse brought my pill in a little cup, left it on the tray, and closed the door back up.  That’s how all of my meals were delivered, too.  It was the opposite of my experience after the surgery when people were constantly in and out of my room.  This time, I saw a person’s face maybe 4 or 5 times, and no one actually entered my room.

I was sick most of the night, so I had to set my alarm to wake myself for each shower.  At one point, I actually skipped a shower because I was too tired and sick to move.  I gave up on the candies after around 3am, too, I was so sick.  If I never see another lemon sour, Jolly Rancher, or Sour Patch Kid again in my life, I will be very happy.  The nausea started to wear off mid-morning and I was able to shower a few more times.  Over the course of the night my neck swelled up pretty severely, as well, which I had been warned about.  Anywhere that there was thyroid cancer and the radioactive iodine was taken up, I would notice swelling.  Apparently there was a good amount of cancer left in my neck because I felt like I did after my surgery all over again — puffed up and tight throughout my face and neck.

I waited anxiously for Hutch to come back at 9:30am to test my radiation levels to see if I had eliminated enough radioactive material to get released to home quarantine.  I drank as many liquids as I could get down (over 2.5 gallons in total!) and showered as many times as I could (total count was 7 showers) to try to make that happen.  True to his word, Hutch showed up at almost exactly 9:30am.  From a distance of 3 meters away he conducted my scan with a Geiger counter and I can’t tell you how hard I was praying to hear any number below 14.  That had to be the longest 15 seconds of my life…..and I can’t tell you how relieved I was when he announced my number: 12.2!!!  I could go home!!!

I immediately texted Jeremy and, wonderful man that he is, he was at the hospital an hour later…no small feat!!  It takes me an hour to do that drive!  He must have practically jumped into the car to come and get me!  I sat in the back seat of the car on the passenger side in order to maintain the required 3 feet of distance between us for the ride home.  We did make one VERY important stop on the way there.  As I was no longer restricted by the low iodine diet rules, first order of business was ICE CREAM!!!  And boy, did I do it right!!!  I made sure not to touch anything at the ice cream shop and Jeremy paid so that was no issue, but I’m pretty sure there were not too many chocolates left out of my fabulous ice cream concoction!!

my ice cream was soooo huge that it didn’t all fit in the waffle cone!! (you can see how swollen my face is here, too)

The ice cream tasted better than anything I can ever remember tasting.  Having been without so many different kinds of food and living off of mostly egg whites for the last 5 weeks, topped with the awful mystery meals that I was served at the hospital and being sick off of the sour candies, I don’t think I’ll ever taste anything as good as that GIANT ice cream ever again!!  It’s a good thing I ate that, too, because I was off and on nauseous for the rest of the day and had no appetite until very late that evening.

The experience gave me a deep appreciation and empathy for victims of nuclear fallout, such as Japan and Chernobyl.  My very “small” (in comparison) dose of radioactive material made me feel very ill…I can only imagine the horror of being exposed to much larger doses.  I also have a greater sense of empathy for those who go through chemotherapy.  I’ve heard how ill that makes you feel and for a much more extended period of time.  I only really felt terribly ill for about 24 hours and that was more than enough.

Since then, I’ve started to feel pretty much like myself again and the swelling in my face and neck has been subsiding.  I’ve spent the last few days at home trying to adjust to being in quarantine…which is incredibly difficult without being able to see the contamination.  It’s especially hard not to cook, wash dishes, and do all of my normal activities which often center around the kitchen.  I’ve got rubber gloves for when I’m doing anything that I am worried might contaminate something that others might touch or eat.  And I have to run upstairs every time I need to use the bathroom which is just strange.  I feel a bit like a hobo eating off of paper plates and plastic utensils…definitely strange when I’m so used to reducing the amount of waste that I produce.  I generally recycle more than I throw away and I can’t do that now.  It’s frustrating and annoying, but I am thankful that it is only temporary and I should be able to go back to normal soon enough.  I have been enjoying the fireplace (I think Jeremy likes it, too) with the cool weather that has been setting in!!

warming up in front of the fireplace!

My mom came into town to keep me company while I am in quarantine and to help with cooking and (thankfully) wedding planning, which has taken something of a backseat lately to all of the cancer “activities”.  She’s also going to take me to my appointments at WHC on Tuesday and Thursday (an appointment with Dr. Sullivan, my endocrinologist), which is a huge help.

I think that covers most of what has been going on since I went into the hospital.  I’ll update with what I find out on Tuesday after my scans and bloodwork.

Thank you to EVERYONE for your notes, texts, phone calls to the hospital, checking in with Jeremy, and even one VERY appreciated gift of a stash of Graeter’s ice cream!!

Love to everyone,

Keren & Jeremy

This entry was posted on October 15, 2012. 7 Comments

Heading into Treatment

This will be my last post prior to my therapy dose of I-131.  It has been a long, emotional week.  Thursday was my PET/CT scan which was done to generate, as I understand it, a 3D image of my body showing exactly where any cancer is hanging out.  The day before the test I had to eat a diet very low in carbs in addition to maintaining the low iodine diet.  Like I explained in my last post, the PET/CT scan works by injecting a very low dose of radioactive glucose (a very small fraction of the mini dose of radioactivity I received last time) when my body’s stores of glycogen were depleted.  Because cancer cells replicate much more rapidly than normal, healthy cells, the radioactive glucose shows up in the scans concentrated in areas where there is cancer.  The CT scans done at the same time help draw an image of my body and exactly where the cancer is located.  I experimented with what I could possibly eat the day before the test and came up with a couple of creative options.  I made an egg white-pumpkin-peanut butter souffle and an acorn squash bake that came out pretty delicious, actually!

acorn squash bake (back) and pumpkin peanut butter souffle (front)

The test itself wasn’t all that different than the other scans I’ve been having.  I hadn’t slept well the night before, so I was very sleepy when I showed up to the test.  I also couldn’t eat or drink beforehand (fasted from midnight the night before until after the test), so that didn’t help either.  Being sleepy worked out well, though.  Jeremy and I were escorted to a new section of the hospital (well, new to us) — the Cancer Institute, where the PET/CT scans are conducted.  I was taken back into the prep area where I had a mini room to myself with a “barcalounger” and a remote control with a TV.  I was wrapped up in warm blankets to ensure that my muscles were warm for the test and didn’t interfere with the images.  I was injected with the radioactive glucose and then had to wait an hour for the glucose to get distributed throughout my body prior to the scans.  I nodded off and the hour passed pretty quickly.  I was taken to the PET/CT scan room next, where I was swaddled in fresh, warm blankets and then got started with the scans.  I nodded off again, which was nice since it was another hour long test.

PET/CT Scanner

After the scan was over, it was back to the waiting game.  Jeremy and I spent the weekend getting caught up on housework.  We had blinds installed (yay!) and I made about 10 or 12 dozen muffins.  I froze most of them for Jeremy so he has food to eat while I can’t cook or touch anything that anyone else will come in contact with.  I also made some more strawberry shortcake and blueberry muffins for myself.  Cooked up a bunch of chicken, did some grocery shopping, laundry….basically like I’m getting ready for a long vacation.  Only not nearly as much fun as the Virgin Islands or a cruise would be.

We did get some exciting news over the weekend.  Our puppy was born!!  We’ve been on a waiting list for an American Mastiff for a while and we’ve had to say no to several puppies since my cancer diagnosis.  Jeremy has been very patient, waiting for the right time to adopt a new member of our family and we were finally able to say yes to the breeder!  Our “baby,” a male brindle was born September 23.  Jeremy “won” the breed “battle”…so I got to pick the name.  Say hello to Kitty, our soon to be new baby boy!!  I chose the name because this “little” guy will top out somewhere between 180 – 250 lbs when he’s fully grown!!  Don’t you love the name?!?  😉 We will be driving to Ohio in mid-November to pick him up and bring him home (there are not many breeders out there that have American Mastiffs).

Kitty!

 

Yesterday I got a call from my endocrinologist, Dr. Sullivan with the results of my PET/CT scan and the dosimetry tests I underwent.  The spots that showed up on my lungs on my previous CT scans and MRI were confirmed to be cancer by the PET/CT scan.  That’s the bad news.  The good news is that no other spots showed up on the PET/CT aside from my neck/thyroid region, which was expected.  Dr. Sullivan also informed me that the dose of I-131 that the doctors managing my case decided on is 250 millicuries…that’s the highest dose safe to be administered to humans.  I’m not entirely sure what that means.  I’m guessing that my body sucks up iodine and then dispels it very quickly if my dose is that high, but I don’t know even a fraction of all of the physics that goes into the calculations, so I could be way off base.  Dr. Sullivan advised me that I could be in the hospital for 2 days or possibly longer, but she has never had a patient that had to stay in the hospital for longer than two days.  Here’s hoping.  I really would rather get released on Friday to come home, but only time will tell.  The technicians will scan me after a day with a Geiger counter to determine of my levels of radioactivity are low enough to release me to home quarantine.  Dr. Sullivan also increased my dose of Synthroid, thankfully, because not all of my symptoms of hypothyroid had been resolved yet.

Today was Thyrogen injection #3 (the first two being before my dosimentry scans and mini RAI dose).  I also had a blood pregnancy test.  (Obviously the hospital doesn’t want to administer a dangerous dose of radiation to a pregnant woman.  Standard procedure.)  Tomorrow is Thyrogen injection #4 (the final one…for this year).  Then Thursday is my admission to the hospital.  I don’t have a lot of details about what will go on at the hospital.  I have to be at WHC at 11am on Thursday morning to start the admission process.  Eventually I will wind up in one of 4 rooms in the hospital designated for RAI treatment, with all surfaces covered in either paper or plastic.  I believe my dose of I-131 will be delivered in a heavy lead container and the vial will be handed to me with tongs.  I will then be closed off in a room, alone, until I pass enough of the radioactivity out of my system to be considered safe for release into home quarantine.  I will be loading up on fluids, showering every hour, and sucking on sour candies every 10 minutes to get as much of the radioactive material to pass out of my system as quickly as possible without causing damage to my organs by sitting stagnant.  No one will come into my room; I assume my meals will be left outside my door.  Once I come home, I’ll be in quarantine for 8 days.  I’ll sleep alone, no one can come within 3 feet of me for more than an hour a day, and I can’t cook for anyone or wash my laundry with anyone else’s laundry or use the same bathroom.  The precautions extend to pregnant women and children under 2 for twice the normal amount of time.

I’m dreading this part of the process.  There’s just no way to dress it up to be something it’s not.  It sucks.  I’m doing what I can to prepare things ahead of time and I’ve done a LOT of cooking, since that’s something I love doing and I won’t be able to for a while.  Today’s experiments were whole wheat, fat free yogurt biscuits (which I will FINALLY be able to eat when I get out of the hospital!!!) and a low fat chocolate chip skillet cookie.  I treated myself to a brand new cast iron skillet and I love it already.  I can’t wait to see what other creations I can come up with in it!!

a healthy, low fat Chocolate Chip Skillet Cookie

 

That’s about it.  I should be able to post an update after I get out of the hospital.  Thanks for all of your thoughts and prayers.  They are certainly much needed and appreciated, especially now.

Much Love,

Keren & Jeremy

This entry was posted on October 10, 2012. 9 Comments

A Full Day of Scans

Yesterday was a short and incredibly uneventful day.  I only had an 8 minute full body scan…but I did have a blood draw, as well.  Apparently I’m having blood drawn (some days more, some days less) every day that I go in for scanning.  All in all, we were at the hospital for a mere 45 minutes, which was less than half the time it took to drive there and back!  I had gotten some of my energy back, so I managed to get some cleaning and organizing done, too.  It felt great to have more energy back and get a few things accomplished.

Today, on the other hand, was a very long, draining day.  I don’t have very many more answers — still just a lot of questions — but from the doctors’ perspectives we are making progress.  Today started out with 4 scans and a blood draw.  One 8 minute scan (same as previous days), one 45 minute full body scan (the camera only photographed 4 centimeters per minute!), one 20 minute chest scan, and a 20 minute neck scan.  The scans were all done in a gamma camera (Ecam), which basically “photographs” the gamma energy (radioactivity) being emitted from my body.

i spent a LOT of time in the gamma camera (or Ecam) today

Those first 4 sets of scans didn’t take quite as long as expected and I was even able to watch the nurse insert the needle into my arm to draw blood today…without passing out!  (I know my dad will be so proud of me when he reads this! 🙂 )  However, after the scans the nurse came to tell me that the doctor reviewed my scan results and wanted to get some additional images of my chest and abdomen.  Honestly, I couldn’t tell you exactly what was different about this camera and these scans, other than they were much longer (45 minutes each) and they involved a little bit of x-ray imaging, as well.  All in all, I spent something like 185 minutes lying still in various machines today.  It’s amazing how exhausting it is to do absolutely nothing.

I’ll do my best to explain the rest of what I know, although it’s all fairly complicated and getting all the information after such an emotionally draining day means that I probably didn’t quite take it all in.  We waited for close to an hour after my scans to speak with the nuclear medicine physician while he was trying to get ahold of my endocrinologist, Dr. Sullivan, to discuss the results and his recommendations for next steps.  When we finally met with him, he showed Jeremy and me the images that were taken during the course of the day.  There were a number of very dark spots where my thyroid used to be, meaning that there’s still a large concentration of thyroid cells that took up the I-131.  This most likely means that there are still cancerous lymph nodes and cancerous neck tissue that need to be ablated (destroyed by the radioactive iodine) with the RAI treatment dose.  There were also a couple of faint spots in my lungs and stomach area which could be simply the iodine being moved through my system, but there is some concern that the scans that were done didn’t pick up cancer in my lungs based on what was seen on my previous CT scans and MRI scans.  From what Dr. Garcia explained, the scans that were done today weren’t necessarily going to show where the cancer is or how much is there, but are specifically intended to take measurements of how my body metabolizes iodine to come up with “my number” for what dose I should receive.  Basically, if my body uses iodine very quickly, I will need a higher dose in order to expose my thyroid cells to the same amount of radiation as a lower dose if my body processes iodine slowly.  As it turns out, the goal is to expose me to just under 200 rads (rad is the absorbed radiation dose, which refers to the amount of energy absorbed by human tissue) of radioactivity to hit the cancer as hard as possible without damaging my bone marrow.  Depending on how my body distributes and metabolizes the radioactive iodine, the dose amount to achieve 200 rads of radiation exposure could be high or low…these are the measurements the doctors are searching for.

The doctor reassured me that they were getting all of the information they needed and expected to get from the scans they have been doing.  However, because the gamma images didn’t show the lesions in my lungs, he and Dr. Sullivan believe that a PET scan is a good idea in order to see exactly where the cancer is and establish a baseline so that they can determine if the RAI treatment is effective.  This means another test next Thursday.  To prepare for the PET scan, I will have to eat a diet very low in sugars (carbs) the day prior to the scan…..on top of the low iodine diet.  It’s looking like a lot of turkey, avocado, egg whites and peanut butter for that day.  The low carb diet is intended to deplete my body of its stores of glucose/sugars.  When I go in for the PET scan, I’ll be injected with glucose and an hour later I’ll have the PET scan, in conjunction with some CT scans, in order to create a 3D picture of the cancerous lesions in my body.  Because cancer cells replicate much faster than healthy cells, those cells will take up higher concentrations of the glucose, thus showing a picture of where the cancer is located.  I am now scheduled for an additional trip to WHC on Thursday for that scan.  I guess I won’t be spending too much time at work in the month of October!

On a more positive note, my sponsor, GET SOME Xtremewear, just came out with an awesome line of limited edition t-shirts with a fight cancer message.  Part of the proceeds are being donated to the Susan G. Komen Foundation.  Check out the shirts and if you decide to order one (which you totally should — they’re great shirts that help a great cause!), just mention me in the comments! 🙂

http://getsomextremewear.com/shop/fight-cancer-ss-burnout-tee/

gotta grab one of these t-shirts!! comfortable, durable, and for an AWESOME cause!! 🙂

That’s about all I have for today.  I don’t think there will be too much to update for the next few days, since tomorrow and Monday’s scans are more of the same (the short 8 minute scans plus bloodwork).  I’ve had to pack and take a lot of food with me, between the low iodine diet, my fitness diet and being out at the hospital and all over the place lately, so I’m keeping creative and busy in the kitchen when I’m at home.  For tomorrow, I made myself some strawberry shortcake muffins for breakfast, using all low iodine friendly ingredients, and I made some separate banana nut muffins for Jeremy.  This way we can sleep in a bit and eat on the drive in to the hospital.

my strawberry shortcake muffins for tomorrow’s breakfast

Jeremy’s banana nut muffins for tomorrow’s breakfast-on-the-run 🙂

I also had invested in a larger version of my pink cooler….and boy did it come in handy today!!  I think it will be getting a lot of use in the upcoming weeks!  All of the nuclear medicine staff were commenting on it (some were teasing me that I was lugging around 20,000 calories in that thing). 🙂  It’s pretty awesome — held all of my food and water for today’s very long day.

my MONSTER cooler!!

My new iPhone case also arrived today, which was a nice surprise!  It’s pretty perfect!! 🙂

perfect!

 

I think that’s enough information for one day!!  I hope everyone has a wonderful weekend.  More updates next week as I plow through these tests.

Much love,

Keren & Jeremy

This entry was posted on September 29, 2012. 6 Comments