How About A Fun Blog Entry?

**Sidenote before this post even begins! I’ve been writing this entry since January 8^th, so bear with me if some wording is out of date…

Hi Everyone! I know this is a little out of order because I said that I would be posting soon about the rest of my stay in the hospital, but I also promised a while ago a post about some of the FUN things I’ve been doing since Christmas. So since I’ve been living and breathing hospital the past few days, I’ve decided that I’d catch you up on some of those other things…

Quickly though, for those of you wondering, I AM home from the hospital.  I came home from my first week of treatment Friday the 7^th around 3:30pm, napped, ate dinner and then proceeded to watch my Fightin' Blue Hens football team get beat in their championship game. (I DO NOT want to talk about that!)

Anyway, let’s get started with filling you in on some of those other things that I’ve been doing, leading up to my hospital visit this past week…

Christmas Eve!

Christmas Eve went as described in my blog that day.  While I didn’t take pictures of each dish we ate as I said I might, they were all still eaten! Yum! After dinner, we opened gifts as usual and ended the night with a viewing of National Lampoon’s Christmas Vacation. Overall, pretty solid night…

Christmas Day

The next day was obviously Christmas! I felt like a little kid on Christmas morning because I woke up at 5am. This however, was not due to being too excited about opening gifts but rather because I just couldn’t sleep from eating so much the night before and from the effects of my medication.  I received some great gifts from “Santa” though, including mass amounts of gift cards, perfume and new boots! Christmas morning we go to my aunt’s house on my dad’s side of the family for a brunch cooked mainly by my grandmother, but contributed to by my mom and aunts. It was delicious!! After brunch, I tried to avoid watching the continuous playing of A Christmas Story on TBS, but I wasn’t successful.  For some reason, there is NOTHING else on television on Christmas Day except for that movie, infomercials and Christmas Day mass. What. The. Heck?!  After dessert and gift opening at that house, we went back to my grandmother’s house on my mom’s side of the family to see the other half of the my aunts, uncles and cousins that we do not see the night before. By the end of the night I was simply exhausted and headed straight for bed when we got home.

Christmas Cards

Speaking of Christmas, I wanted to take this time to share with you a few of the absolutely PRICELESS Christmas photo cards I received from a few of my favorite newly-married couples! Thanks guys! I look at them hanging on my corkboard everyday and they definitely make me smile!

Snow Storm/Black Swan

The next two days, as I’m sure was the case for everyone living in the Northeast, was pure chaos. Here in Bangor we were hit by one of most annoying snowstorms I can remember. While most roads appeared to be clear because they were treated by road crews beforehand or the wind was constantly blowing the snow off the roads, other roads were completely treacherous and it was unthinkable to drive down hills without a 4-wheel drive vehicle. Since we at my house do NOT have a 4-wheel drive vehicle, we were trapped in the house all day on the 26^th and most of the day on the 27^th. I finally convinced my mom on the 27^th to brave the snowy roads and drive myself, Nate and Kayla to the movies to see Black Swan, which we had been dying to watch! (I’m personally kind of obsessed with Natalie Portman, and if she doesn’t win an Oscar for this movie, those Academy Award people have GOT to be crazy!) Here is my review on the movie I’ve given people who have asked:

DEFINITELY watch the trailer and know what it's about before you go... If you go to see this blind to what the movie is, you will be shocked and probably won't like it, to say the least. It would help if you are not easily freaked out by "thrillers" either. The movie was everything I thought it would be bc I was prepared for it! You could definitely tell the people that were in theater because they were dragged there just because they heard it was supposed to be a good movie. I’m not going to lie, there were some pretty INTENSE scenes that again, if you aren’t prepared for, you will be SHOCKED and completely blown away by. Overall, the movie was awesome with great acting and effects, but I wouldn’t recommend it for everyone by any means! Complicated explanation, right?  

Mall With the Magster

Tuesday the 28^th was a really fun day for me mostly because I got to see one of my dearest friends from college! Maggie is originally from Scranton and we met when I was an undergrad at Delaware and she was a grad student there.  We worked with each other at the good ol’ ERC for 2 years and somewhere between 2005 and now, we’ve become very close! I don’t get to see the Magster a lot because we both have busy schedules, but on the 28^th she was dropping her mom off at the Lehigh Valley Airport and it just so happened that I had a few gift cards to use from Christmas. We met at the Lehigh Valley Mall for shopping and lunch! It was great to get out of the house for a little bit and visit with my favorite School Psychologist!  Maggie stopped at my house for dinner on her way back to Scranton and thus ended a successful Tuesday! Thanks again for everything that day, Mags! You’re the best!

Barium & Wednesday Brunch!

Wednesday the 29^th was also quite eventful.  I started the day off by drinking a FULL bottle of Barium Sulfate in preparation for my full-body IV contrast CT scan later that night.  Depicted here is one of two bottles of this stuff I had to drink that day:

The barium suspension was surprisingly not terrible like I oringinally thought it would be. Basically it’s a frothy, white, milkshake-like liquid that smelled like fruit and tasted a bit like a piña colada! (Ok, maybe my head’s just somewhere else! Ha!) Barium in this form is used as a contrast dye that highlights your intestines during CT scans. Since the rest of my body hadn’t been scanned for any cancerous cells up until that point, this is why a full-body CT scan was required – mainly to rule out that abnormal cells were present in any other part of my body besides the brain.  (You’ll remember that this was before we had the diagnosis of CNS Lymphoma so this was a test that helped with the eventual diagnosis.)

Anyway, I kind of skipped over this before to tell you about the awesome barium-drinking, but Wednesday morning I also got together with a few friends for brunch! The lovely Danielle was visiting from Tennessee with her husband and BABY and the brunch was “thrown” to celebrate! It was a great morning of chatting and EATING! Here are a few pictures Cheyenne snapped on her iPhone of our little get-together:

Pizza With SE & Nicki

Thursday the 30th, as you know, I visited the oncologist in the afternoon to receive my test results and diagnosis. I had already planned to get together with Nicki and Steph for dinner that night, and didn’t feel the need to cancel since I hadn’t seen either of them in a while. Plus, as mentioned previously in other posts, I wanted to tell as many friends face-to-face about my diagnosis, as possible, and this was the perfect opportunity to get started with that! Plus, I couldn’t pass up the delicious bacon, chicken, ranch pizza Nicki had raved about!!

Mo Visits & Happy 2011!!

On the last day of 2010, a long-time best friend came to visit for the day.  Mo, (as she is fondly known to me as), and I have known each other since the first grade. We grew up two minutes from each other, but she moved away after high school with her parents.  We’ve stayed close through college and after graduating regardless, and I was honored to be the Maid of Honor in her wedding this past July! She and her husband, (that is still so weird to say!), now live in Drums, PA which is even FARTHER away from me than last time she moved! Needless to say, we were due for a little visit! Though I’ve seen Mo since her wedding, I was unable to spend the time looking at her wedding photographer photos and honeymoon photos, so this is what we spent the majority of the day doing. Here are a few of my favorite pictures from Mr. & Mrs. Volcskai’s wedding day:

It was definitely fun to catch up with Mo – chatting, reminiscing and eating pizza is always a good time J

Later that night, it was time to celebrate the NEW YEAR with some good people! Even though I had to substitute sparkling grape juice for champagne this year, it was still an awesome time being around some of my best friends and ringing in 2011!

Happy 2011!!

Changes From the 1/4/11 Blog Post: My Medication Administration

I know I could have just gone into my last post and edited some things out straight from there, but I decided to just do a new post about my medication regimen and dosage.  Long story short, somewhere along the way, there was a communication misunderstanding between myself and my parents and my doctor who is overseeing my chemo treatment.  Trust me, everything seems to be sorted out now and we did THOROUGHLY question the dosage misunderstanding by having the nurse actually call my doctor at 1:45 in the morning to make sure what he had written on the instructions for the nurses who administered my chemo was in fact, correct. 

Anyway, the differences I speak of is really in the LENGTH of time I was administered the chemo medication, NOT in the AMOUNT of chemo I received.  I posted previously that I would be receiving the chemo medication for 24 hours straight.  That was not the case.  I started receiving my chemo through my PICC line shortly after a 15-minute span of receiving anti-nausea medication in preparation for for the chemo.  The chemo started promptly at 2:15 am (which is technically on Wednesday).  Rather than that dripping for 24 hours like we originally thought, that was administered for only 4 hours, bringing us to 6:15 am.  What we may had been getting confused when speaking with the doctors and nurses in the past was that number of 24 hours which comes into play now... When my chemo meds ended at 6:15 am on Wednesday, it would be 24 hours to the minute until I would start receiving my anti-dote to the chemo treatment, call Leucovorin.  In the meantime during those 24 hours yesterday, I received more of the sodium bicarbonate fluid that hydrates me -- I think I said in my last post that it was saline being used to hydrate me.  Details, people!! 

**Side note: Above I mentioned that the discrepancy between the chemo medication was in the LENGTH of time I received it rather than the AMOUNT I received. Let me explain that further: No matter how long I would have received my chemo drip overnight on Wednesday, I would have received the same amount.  The longer the period is, however, the more the medication is diluted with saline or another fluid or it is dripped slower.  They sometimes administer the chemo medication over longer periods of time when they don’t know how a person will react to the medication or the person reacts negatively to the treatment and are experiencing more side effects or the person is a child with a lower body mass and therefore is expected not to handle the medication well.

Soooo if you're following along, you would know that as of this morning, (Thursday the 6th), at 6:15am, I received my first injection of the Leucovorin medication.  Again, this is the anti-dote to the chemo medication and what it does is to help restore some of the "good blood cells" that the chemo kills along with the "bad" cancer cells. I got this medication through the PICC line again, but this time rather than letting it drip through the IV, my nurse administered it through what they call a "push". The appropriate amount of medication was pushed into my IV through a syringe and this took all of 3 minutes to do.  It might sound painful to have this pushed, but it wasn't all. 

A brief thing to mention here is that my blood was taken right before the Leucovorin went in, to test my blood cell levels and see how much of the chemo medication was still in my body at that time. Blood testing will not be done again unless they were too low this morning and I need to stay here LONGER than expected.  (Again, this is all very touch and go with my admittance and discharge from the hospital, but everyone here knows what they’re doing).  I need to get 6 dosages of Leucovorin every 6 hours by IV through my PICC line before I can leave the hospital.  Math time again!!  If I received by first dose of that at 6:15 on Thursday morning, when will I receive my LAST dosage??  If you guessed 12:15pm tomorrow the 7th you are CORRECT!  Let's all do it together now... #1 at 6:15am Thursday, #2 at 12:15pm Thursday, #3 at 6:15pm Thursday, #4 at 12:15am Friday, #5 at 6:15am Friday and #6 at 12:15pm Friday the 7th of January.  By that time, I technically should be getting ready to leave the hospital, but at this point you know as well as me that things don't always run so smoothly.  The staff also needs to make sure that I am adequately hydrated at that time and that my blood levels are at the appropriate place to exit the building, (they should know that by 12:15pm tomorrow because of the blood test results done this morning).  Once every last medication is administered through my IV, however, they still need to remove my PICC line. Plus, at some point we need to be discharged and given instructions for next week and the week after that!  So again, you don't actually know when I'll be leaving on Friday.  It sounds like early afternoon, but who knows!

Stay tuned for updates about yesterday Wednesday January 5^th which was my first day of chemo treatment.  It was a very tiring day complete with no sleep the night before, a spinal tap and (only one!) episode of vomiting.  Hopefully I’ll have that up later today after I take a walk around the floor and nap for a little!

xoxo,

*Casey

The BIG News: My Diagnosis and Treatment!

So I guess this is the post that most people have been waiting for for a while now.  You may know already that I’ve known my diagnosis now since Thursday night when I had my doctor’s visit with a hematology oncologist in Allentown. This visit was originally set up as a “just in case” scenario if it was found out that I had what is called Primary CNS Lymphoma which was one of the two “options” I talked about in one of my past blog entries.  Just for good measures, I’ll mention now that the other “option” of diagnosis up for debate was still that there was some sort of meningioma in my brain.  It was either a Grade 2 meningioma which was the abnormal cells, (not benign in nature and not yet malignant, rather sort of an “in between”) or a Grade 3 meningioma which would indicate malignant cells. The only real difference between the two was how they would be treated to get rid of them.

Anyway, at this point I want to mention WHY I waited until today, (Tuesday the 4^th), to post this blog  when I’ve known my diagnosis for 6 days.  There are two answers to this inquiry:
1- I have literally not had the TIME to sit down and write this entry; you’ll see in a few minutes how LONG this story is from beginning to end.  Since Thursday, I have had plans I’ve made with friends including New Years celebrations, so I physically haven’t been home long enough to write this entry.  In addition, when I am home there are continually family and friends stopping by for visits that I also need to physically be present for to tell the “story” of my diagnosis to them! Oh! And did I mention that now that the steroids I have been taking since my surgery that kept me AWAKE for 3 ½ weeks, are completely out of my system, (I’d say this happened last Wednesday), I am EXTREMELY exhausted causing me to start my day, (regrettably because I could sleep all day), at 10am instead of 6am.
2- The #2 reason I have waited to post is probably the more important reason, in theory, that I waited to blog about my diagnosis.  This reason is frankly that I felt guilty that my good friends who have been there for me through this ENTIRE thing, would be finding out through my BLOG (instead of talking to me directly), what my diagnosis was.  So I thought I would take the appropriate amount of time to either see or talk to all of these people on the phone between Thursday night and when I was set to start my treatment, (which, **spoiler alert** is TODAY, the 4^th!) BEFORE I let the rest of the world know on my blog.

*Side note: My parents have been updating my extended family members so they have known my diagnosis through direct contact or relayed message since Thursday or Friday.


The problems with my idea to contact my friends directly is the same kind of thing that I   mentioned what has been going on since Thursday under my #1 reason above; I actually RAN OUT OF TIME to contact all the people I intended to directly!! Between a combination of me not being home because I was out seeing my friends to tell them face to face, celebrating New Years both on NYE and New Years Day, friends that I normally would see being sick or out of town, me visiting with the visitors at my house while I’m home, or me sleeping haha!, I did not have the chance to tell everyone that I wanted to. Bring on that guilt again!! I know the people who I didn’t get a chance to talk to or see know who they are and hopefully they understand that I really DID want to tell them before I shared this on the blog.

Anywayyyy (that’s going to be the word of the day I think), are you annoyed at me yet for not just getting to the DARN POINT?! I know you are busting at the seams to know what’s actually wrong with me! Well… I do, in fact, have what’s called Primary Central Nervous System Lymphoma which is considered a cancerous condition.  Let me mention first that this type of cancer is present in the Central Nervous System, which consists of the brain and the spinal cord/spinal fluid. In the tests I had done in the past week, they found that do NOT currently have any abnormal or cancerous cells anywhere else in my body besides in my brain (and possibly my spinal cord hence the CNS part).  They will look to see if it’s in my spinal fluid when I go in for my first treatment, but regardless, the treatment is the same whether it’s in there or not.  The fact that the cancer isn’t in any other part of my body is a GOOD THING because the treatment can be more focused on one area.  A few other tidbits to note: Primary CNS Lymphoma is one type of non-Hodgkins lymphoma and there are many of those.  The important thing to remember is that right now the “bad” cells are in my brain only, and that benefits me right now for my treatment.  The other tidbit that doesn’t have a place anywhere else in this story is that, (and prepare to have your mind blown by the following statistic), there are roughly 45,000 people who have some type of non-Hodgkins lymphoma in the world.  1% of these people (i.e. 450 for the non-math majors), have Primary CMS Lymphoma which again, is my diagnosis. Further, most patient with CNS Lymphoma are over the age of 50… Soooo that makes me a RARE egg people!! But come on, if you ever met me, didn’t you always think this?? J

What’s next to tell??

Treatment Explanation and Process

I know when I explained this the people I got to talk to after we still had the two possible options and were waiting for the diagnosis, I said that if I ended up having this CNS Lymphoma that it would be treated medically with the same medication that is sometimes used for Rheumatoid Arthritis patients.  This is still the case, but in my specific situation/course of treatment, this medication will be given in HIGH dosage form.  When it’s given in high dosage form it is actually called chemotherapy.  Now, usually chemotherapy is considered to be more severe than radiation and it IS with certain types of cancer. In my case, it’s different (surprise, surprise).  The goal of radiation in general is to completely destroy tissue (mainly tumors as opposed to cells and DNA).  So this is GOOD for destroying tumors in other parts of the body (leg, skin, organs that can do without parts of them and still function). But it is NOT good to destroy tissue in the BRAIN because then permanent damage results (memory loss, speech function, or any cognitive abilities). We do NOT want that.  Because when I get through treatment and am able to live the rest of my life, I want to be ME and have the same personality, intelligence and all that good stuff J. Besides, the type of cancer I have currently is more of a blood/DNA/cellular/immune system deficiency and NOT a tumor.  The way you kill these bad blood/DNA/cellular “things” is through this high dosage medication.  So that’s what I actually started today (Tuesday Jan. 4^th).  It’s a treatment which entails me being in the hospital for 2-4 days at a time.  I arrived at the hospital earlier today at 3:30pm because that’s when a bed at St. Luke’s Hospital where I’m receiving my treatment opened on the oncology floor where nurses and staff are trained thoroughly on administering chemotherapy. 

*Side note: The treatment for CNS Lymphoma pretty much ALWAYS starts out the same. And it’s with the treatment I’m getting called high dose Methotrexate. This treatment is standard and administered the SAME everywhere you go. So yes, St. Luke’s has all the equipment and facilities I need to adequately receive my treatment.

When I got to the hospital, I was admitted to a room, and I had a PICC line inserted by two nurses.  I’ll probably do a small post about the PICC line insertion and my experience with that at some point, but for right now I’m referring you to the link above.  Basically it’s a type of IV, but the tube is actually run through a blood vessel in my arm, inside my body up to a vein near my heart so the medication administered is more directly and affectively running through my body (mainly my brain to kill the cancer cells). After this line was inserted, I had to have an X-ray done to make sure the PICC line was inserted correctly and sufficiently enough for the medication to be run through it.  The x-ray itself took all of 5 minutes but since it was dinnertime for the aides who take you to and from the radiology floor, I didn’t get back to my room until nearly 6 o’clock! I then ate some hospital food for dinner and they then started an IV drip at 6:30pm which is currently “pumping” saline, etc. to hydrate me. After about 6 hours when I’m hydrated, I’ll start to get the chemo meds through my IV (PICC line), again, called Methotrexate for a full 24 hours.  That brings me to approximately 12:30 am Thursday, (kind of like Wednesday), night. You didn’t think you were getting a math lesson today, did you??

While we’re here, let’s talk about that chemo medication (Methotrexate)…. Chemo meds KILLS the cancer cells but they also kill good cells (mainly your white blood cells).  White blood cells prevent infection so you need for them to be up to a certain level so you don’t get sick.  To return my white blood cells to a point where it is “safe”, I will then receive an antidote to the chemo meds for as long as I need to get my cell count to this certain level where I can “take” the outside world and all it’s germs.  As soon as these levels are reached and I am hydrated adequately, I will be discharged from the hospital to go home.  I will definitely be in the hospital Tuesday and Wednesday nights. Thursday night at this point is questionable because again, you leave when your blood levels and hydration is adequate. They say the whole treatment process takes 48 hours minimum to complete and that bring me to 6:30pm on Thursday because of when I was admitted into the hospital today.  BUT that doesn’t mean I’ll be actually be discharged then.  It’s different in everyone and basically depends on how your body reacts to the medication.  PLUS there is the issue of what time is the cutoff at night for discharge to happen. We’ll cross that bridge when we get to it…

So looking more into the future it does get a little more complicated with the treatment schedule… I will receive treatment for 2-4 days this week and then I will have next week “off”.  What happens on “off” weeks is that I will be home but have my blood levels monitored I think only once next week to make sure the white blood cell levels are okay to start the next week of treatment.  Once they’re adequate, (basically that they can “handle” more chemo), I will start the next 2-4 days worth of treatment in the hospital. It might not be on a Tuesday like it was this week, it’s whenever your body is ready for it.  So I’ll go every other week for treatment , 3 times for a total of about 6 weeks.  After those 6 weeks I will have an MRI on my brain done to make sure the treatment is working and killing the cancer cells in my brain.  They expect this to work, because it typically does for CNS lymphoma patients. After these 6 weeks however, they automatically do ANOTHER round of the same treatment, (alternating 3 weeks treatment, 3 weeks “off”), just to make sure that they get everything either not showing up on the MRI or cells in the process of developing.  A lot of people at this point, (after 12 “weeks” of treatment), go into remission because their cancer is gone then.  BUT, (you knew there was going to be one), if at anytime either during the first or second MRIs, they find that the treatment is NOT working and killing the cells as adequately and quickly as expected, there is a chance there will be a third round of 6 weeks that is done.  Let’s keep our fingers crossed that this doesn’t need to happen because the longer you receive the chemo, the more likely you are to feel the effects of chemo i.e. hair loss, nausea, weight loss or gain, sores on body, etc. 

“What Effects Will You Experience From Your Chemo Treatment, Casey?”

Thanks for asking!! J Again, it’s different in everybody because everyone’s bodies handle the chemo differently.  The doctor told me that especially in the first and beginning of the second rounds of treatment, I will probably not lose my hair, but it may start to thin or chunks may fall out.  It’s probably going to be emotional for me if this does happen, WHEN it happens, but for right now I’m really okay with my friends and family seeing me with no hair J I know you guys understand… I am looking into wigs for the “just in case” point in time when it maybe happens.  And this is mostly for when I go out in public or for special events (Alison’s wedding) where I want to look good haha!  In addition to that, I MAY have some issues with wanting to eat because food won’t taste the same. Instead it won’t taste at all or have a metal-like taste from the meds.  They don’t expect me to have nauseas because they always give anti-nausea meds in the hospital when you’re in for treatment and they send you home with oral meds for nausea.

Let’s Talk About Remission!!!

So whenever you go into remission depends on when all your cancer cells are gone and your white blood cell level is back to normal.  Once this happens, I essentially become myself again and can do anything I did before this whole ordeal started! You basically live your life during remission. Remission can go on for months, a year, years, or even 20 years! Again, it all depends on the person! CNS Lymphoma however, is a cancer that will come back eventually if it’s more aggressive in the specific person OR you live long enough for it to come back J So it’s basically the ultimate “living with cancer” situation which is scary to think about.  But when or if it comes back, you start again with the treatment that I described above until it’s gone again! It sucks. NO DOUBT about that. But you gotta do what you gotta do!!

Visiting

Visiting is another thing that’s an “issue”.  You might have gathered by now that while I’m in the hospital receiving the treatments, really the only pain I’ll be in is from the uncomfortable-ness of the IVs, nurses constantly coming in to administer the meds and check on me, and those damn beds!! (I will not sleep at all while I’m there). The time that you are “sick” is actually the “off” weeks when I’ll be home because that’s when I’m not in a controlled environment and my white blood cell levels are low. So I’m more prone to infection or contracting something like a cold, the flu or pneumonia, which wouldn’t normally turn into anything if I’m exposed to those germs, but because my immune system will be compromised, I can contract it more easily.  With that being said though, especially with the first and second rounds of treatment, they told me that I really may just be TIRED and that I should live and do what I can (i.e. go out to eat or go see friends or have people visit).  I’m just not supposed to have people come to the house or go around people who are sick or feel like they might be getting sick.  I’m definitely going to WANT to see people and go places on days I’m feeling well enough during treatment periods.  But who knows, I personally may, get sick for a while and can’t have ANY visitors. Yet again, it’s really going to be a day-by-day thing whether I’m feeling good enough for visitors or for leaving my house!  Same with making plans to do things for the next few months. I’m definitely going to make plans to be at things and special events going on, but it might be the case where I’m not feeling well enough to go out if it’s an “off” week or that I actually need to go into the hospital that day for treatment, because I get too sick, or I become dehydrated. When I make plans and then am unable to actually go to them is going to be another really upsetting thing to me when the time comes. But what it comes down to is that it’s really important and top priority that I get my treatment NOW so that I get rid of this thing and be able to live the rest of my life!! 

**Sighhhh**

See how LONG this story is?? Imagine having to that like A MILLION TIMES in the past 6 days! I hope you guys understand all of it and I explained it well. Sometimes I think that even though I know I understand it inside and out, I STILL don’t have it ALL down pat to explain it to others without leaving something out…

So ANYWAY, that’s that. If you DO have questions about anything, (and I’m sure you have one or two in mind right now), PLEASE email me at cem1414@gmail.com or send me a message on facebook. I don’t know if it’s practical to say that I will actually have time to get a full phone conversation in within the next few days I’m in the hospital with nurses constantly coming in my room to administer the meds or else I would say give a call. For short hellos and updates, email or texting will be best. 

As always, I appreciate everyone’s support and positivity!  This is will fall on deaf ears for many of you, but TRY not to worry about me too much because I’m going to be FINE!  Sooner than you know I’ll be back to normal; stressed out by school, working with my snot-nosed kids, and going out to display my sweet dance moves on a regular basis!  Talk to you soon!

xoxo,

*Casey

Christmas Eve! (And the Week in Review)

**This post is for you, Corinne! :)

December 24^th has always been my favorite day of the year.  No school, no work, no worries.  The Christmas tree lights are on and there is usually some type of claymation Rudolph/Frosty/Santa Christmas special playing in the background on TV...  And then there is the pure anticipation of the excitement that the rest of the day will bring: Getting changed into the “Christmas Eve outfit”, trekking to church against my will for the 4pm Mass in the overcrowded gym of the Catholic school, and then FINALLY making it to my grandparents’ house to await the shrimp cocktail (Christmas Eve Feast of the Seven Fishes) and gifts!  The details of this description of course have been fluctuated and been modified over the years, but in short, that is Christmas Eve to me and I love it!

This year we’ll dress up as usual, go over to my gram’s house, and then THOROUGHLY pick our way through the “7 (i.e. 10-30) Fishes Dinner” which in our case includes shrimp cocktail, (I wasn’t lying), and various dips to start the night with.  The party is then moved to the kitchen tables where we park it for the next 2-3 hours.  This rigorous time-frame often presented a rather torturous feeling in me and my cousins from the ages of 3-10 because it took away from precious gift-opening time, but now I could probably sit and eat for 5 hours and be happy as a clam… *spoiler alert*.  Anyway, back to the food…  The rest of the lineup includes antipasto, smelts, baccala soup, pasta with white clam sauce, stuffed squid in cream sauce, crab casserole and scallops.  The meal is topped off with a final dish of some sort of white fish baked in another scrumptious cream sauce.  Can you tell why this is my favorite day of the year?? Thought so…

So that’s what’s going on for the rest of the day today, but I wanted to spend some time now updating everyone on what’s been going on with me in the past few days because APPARENTLY I’ve been slacking on filling you guys in on the fine details of the happenings of my life.  I thought this was MY blog, guys! [winky face].  No really, I did want to do this anyway, I just honestly haven’t had a chance to get to blogging about it yet!  So here ya go!!

First, enjoy a random assortment of pictures taken over the past week of some of the awesome flowers, gifts and arrangements I’ve received… 
[Sorry for the horrible placement of these photos]

 

  

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Now let’s show some pics of the visitors that were lucky enough to have their photos taken while here J…

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Some other fun events captured on film: Event #1 – Christmas/Birthday Party at the Chelsea Sun Inn on Tuesday night hosted by an assortment of fine and beautiful people!  Many good times were had seen here:

And check out the lovely Kat’s blog for more amazing photos of the event!!

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Even though it was not a "main event", Wednesday afternoon I enjoyed visits from 3 of my favorite people who had just returned home for the holidays the night before!!!!  It was so fun and comforting to see them, and something I had definitively been looking forward to!  No visual aides go along with these visits, they were just definitely worth mentioning!!

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Main Event #2 – Christmas Dinner at Stroudsmoor With the Ladies was on Wednesday Night!  In substitution of exchanging Christmas gifts over the past few years, we have been doing a holiday dinner instead!  Here’s a few gems from that night…

Expect the Unexpected: Post-Op Meeting With My Surgeon

I can see how you might be, but don’t be disappointed by this statement: We do not have a definite answer right now.  (Are you surprised? I didn’t think so…)

Nothing bad came out of the appointment with my surgeon today.  If anything, we got what we were ultimately looking for:  For the doctors on my case to do ALL the searching they could possibly do and NOT tell us anything until they were absolutely sure of my diagnosis.  Currently my surgeon is using his connections at other hospitals to get me second opinions on what could be happening pathologically in my brain.  He is working fast and as hard as he can to do this for us and gears ARE turning.  We set up appointments tonight to get things going on our end in preparation for the diagnosis he, (Dr. Moulding), and his colleagues come up with in the next few days.  I could get into the details of the two possible pathology results the doctors are discussing, but it would be irrelevant at this point to do so until the guys who know what they are talking about, are SURE.  My family and I are feeling very confident that things are headed in the right direction and I WILL update everyone as I come to know more info.  As always, your positive energy, support and prayers are the best thing YOU can send my way right now!  Much love!

*Casey

Hi! Getting Ready to Go Out!!

Hi friends!


Just wanted to post a quick "hello" before I leave the house to go to dinner with Elaine and Alison!! 

As you can see, I'm EXCITED to get out of the house for a little bit -- cabin-fever is setting in!!! Ahh!


I'll be back in a little bit with the girls if anyone wants to visit tonight.  Just give a call and stop over!  I'm looking forward to posting again tonight or in the morning to update about some of my favorite news, visitors and gifts I've received over the past few days!  Tah-tah for now!


*Casey

An Update on the Lack of Updates ☺

Hi All!

Thank you for being so patient with me over the past few days.  I know there are many people reading along with this blog and eagerly awaiting posts, but it has been HARD to get on here to actually do it! Between the constant flow of, (very welcome), visitors in and out of my house and the lack of concentration to write coherent sentences, it definitely has made it hard to find the time to blog.  Further, it is frustrating because I really don’t have any updates to give since being sent home from the hospital, and I will not have official results of my lab tests until I go back to my follow-up appointment with my surgeon next Tuesday, December 21^st.  All we KNOW right now is again, that the on-staff pathologist present during my surgery felt that by looking at the tumor and cells removed from my brain, that some sort of abnormal cells still remain in my brain and couldn’t be removed at that time.  These abnormal cells couldn’t be removed then because they are located in an area of my brain that is tricky to reach with surgical tools, (from what I understand).  Whether these remaining cells are just abnormal cells with the potential to develop into something more serious OR… (dare I say it, cancerous) could not be determined at that time.  So that’s where we are currently – waiting to have a face-to-face meeting with the surgeon on the 21^st to get my “diagnosis”.  At that time I will be set up to work with a radiation oncologist who will develop a plan of treatment for my specific case.  I trust that my surgeon and his colleagues at St. Luke’s will be able to steer me in the direction I need to take to get the best treatment available.  That is not saying that in the meantime we are not actively looking into other facilities that have better equipment to treat me when it comes time for radiation.  But if the same equipment that’s going to help me is available in the Lehigh Valley that another facility across the country also has, it definitely makes more sense at this point to stay close to home where my support system is.  Am I getting too ahead of myself with this explanation yet?  I just want to do my best to clear up any confusion about this already very fuzzy situation… One day at a time, right??

Many people have been asking how I’m feeling physically since being home.  Overall, I’d say that I feel GREAT for having brain surgery a week ago today!  

*My main complaint is that I feel groggy and that it is hard for me to get my thoughts together sometimes.  For those of you who know me well, you know that I don’t like to do something until I am confident that I can do it well enough so that I don’t look like an idiot :).  Call it what you want- minor OCD or a constant pursuit of perfection that has always made me, ME!  I'll admit it, maybe that is another reason I haven’t posted on here since last week.  But alas, I need to let go of some of that pride and fear of failure and tell it like it is… That being said, YOU'RE WELCOME for my vulnerability! :)

*Short-term memory is out the window for me right now – if I don’t do something right away when I have a thought about it, it’s long-gone for another time.  I’d imagine I am acting a little scatter-brained because of this. 

*Up until this point I have experienced minimal pain at my incision site, (which is about 3 ½ inches, by the way).  It runs vertical from the top of my head down the left side until just above my left ear.  It’s rather clean and pretty from what I can see, but I will spare you an unwelcome visual aide at this time.

*I have headaches occasionally, which I am taking Tylenol for, but they haven’t been bad at all.

*I have some jaw pain resulting from a few pre-surgery factors combined with the perils of surgery:  Let’s just say pre-existing TMJ + my mouth being open for 4+ hours during surgery + surgeons stretching the jaw muscles located at surgery site = SORE.  This does not affect my eating, however.  Hallelujah!!

*Sleeping has been insanely better since leaving the hospital, that’s a given.  Since I am still on a heavy dose of steroids however,  (and steroids keep you awake), I do not really feel the need to sleep a lot during the day.  I have been waking up at 8am every morning, eating, showering and then awaiting my visitors J.  I take my medications for the last time at night at 10pm and then some time after that I make my way to bed by midnight.  I will sleep about 5 hours, wake up to take more meds, and then sleep off and on another 2-3 hours.  As time passes, the amount and types of medications I am taking will balance out and I will get back to a normal sleeping pattern…

Well, my brain is finally spinning in attempt to post a coherent entry for you guys!  haha!  I just wanted to take a final minute to again THANK everyone for their positive thoughts, prayers and advice that you’ve been sending my way by means of emails, cards, gifts and visits!  Bear with me while I sort through all of the above and thank you personally!  Honestly though, how will I ever re-pay you all?  

The past few days have definitely been a WHIRLWIND of different thoughts and emotions with a Twilight Zone-twist for me.  I could blame it on the meds, swelling of the brain or the adrenaline that is coursing through me, but really I have been making it through these days on pure and utter LOVE from ALL OF YOU!  So THANK YOU from the bottom of my heart!  Check back for further updates and I will see you all soon!

xoxo,

Casey