Glad to Be Home - 5/30/2011

It's nice to be home! 

I slept alot at the hospital but slept better last night at home.  I've taken a few naps today.  The doctor said that I should not be surprised if I am more tired since this is a 2nd surgery.  She said that she doesn't want me to lay in bed all day - she wants me to get up and move around.

Picture of Bandage - 2nd Surgery

The only thing that is 'bugging' me is my swollen right eye.  Not exactly sure why it is swollen....

Swollen Right Eye and Bandage (Changed the Picture Since It Was On The Side)

I should have also put MRI results on here.  The neurosurgeon was out of the office yesterday so that is why I don't have a picture.  He has to print the picture in his office.  I will get a picture when I go to get my staples out.  I will post when I get it.  (Kurt did see the picture on the computer; they did get all of the tumor again!)  

The only appointment that I have this week is my PET scan on Friday.  I am encouraged to walk around and get moving - the doctor told me that I shouldn't be laying around! 



Post surgery #2 update (From Kurt)

Hello everyone,
Jodi came out of ICU around 10:45 AM this morning after a tough night. This surgery was a little more trying for her, she had alot more pain and took her a while to come out of her fog from the procedure.
They did an MRI on her at noon and we have not heard any results as of this writing.
She has spent the day on the eighth floor resting.
Jodi's Mom is spending the night with her tonight, I decided to come home with the kids and get some rest and be back in the morning. Sorry for the short update.
Once again thank you everyone,
Kurt

Post Surgery (From Kurt)

Hello Everyone,
This is Jodi's Husband Kurt, and I will be guest blogger while Jodi recovers from her latest surgery!
Well it is no surprise to anyone who reads Jodi's blog that she did awesome once again for todays surgery. ICU closes from 3-5 for visitors so I thought I would give everyone an update.
Jodi went in this morning at 5:30 AM and was brought down to pre-op around 6:15. surgery started around 7:30 and she was done around 12:15 alot sooner than the last one. We spoke to the Dr. and he informed us that it looked as if the complete tumor was removed. We can not praise Jodi's Dr. enough for another fantastic job!
She was in a little more pain today than her previous surgery, I am sure that was because of the different procedure this time around. When I left at 3:00 she was resting and doing well. I am looking forward to getting her home again soon so she can heal up and get the treatments started. I am sure in a few months she will be back to 100% because of how amazing this woman is!
I would also like to thank everyone who has called, sent cards, posted on Facebook, and have prayed for all of us in these past weeks. We are truly blessed to have such wonderful family, friends, and Co-workers surrounding us and supporting us at this time.
I will write again tomorrow (if Jodi doesn't beat me to it!)
Thank you all again,
Kurt

Getting Ready for Surgery - 5/26/2011

Yesterday was another good day! 

Kurt and I brought the kids to school and then went for breakfast.  As we were walking into the restaurant, we ran into a friend who was diagnosed with cancer 8 years ago (right about the same time I had Ashley).  I believe they gave him 3-6 months to live and it is 8 years!  What are the chances that we would walk into the same restaurant just as he was getting ready to leave?!?!  It was nice to hug you, Carl!  I hope your surgery goes well today - I am definitely thinking about you!

The afternoon was spent at Nathan's last spring concert for school!  Prior to leaving for the concert, we had a VERY proud parent moment!  We received a letter from the middle school band teacher that Nathan was chosen to play percussions (drums) in the Negaunee Middle School band next year - even something his Dad wasn't chosen for in 6th grade!  (Sorry, Kurt!)  That was the instrument Nathan REALLY wanted to play.

Then a few of my co-workers from MARESA came to take me to Border Grill for dinner.  They also delivered gifts from co-workers at MARESA.  Seriously, it took them several trips to haul in everything!  There is too many things to list everything but I want to thank everyone for everything!!!!  (I will be getting the thank you cards in the mail today though!)

Thank you Amy and Holly for dinner!   It was nice to sit and chat with you both - I miss you guys dearly!!!!

Today I am going to have lunch with my mom, my former Early On boss and another former bosses' wife.  It will be a fun time and I am looking forward to seeing your new house, Joy!  Then, I am planning to finish up a few small 'projects' and enjoying time with Kurt and the kids.

I will more than likely be admitted to the hospital around 5 a.m. tomorrow - will find out for sure around 3 p.m. today.  While, of course, I am much more nervous about this surgery as I have had time to think about it more this time, I am hopefully that it will go as smoothly as the first surgery and I can get home fairly quickly! 

They have told me that my medications (anti-seizure and swelling meds) will again increase after surgery so I also know to expect some of the same things again... just as I was starting to feel a bit more human again!  The side effects that I felt will probably happen again - but at least I know that and can expect it and about how long it will take to start feeling this way again.

And, of course, Kurt will be updating my blog after surgery....

Thank you for your continued prayers!

I Believe In Miracles - 5/24/2011

Where to begin?!?!

My impatience yesterday led me to call the neurosurgeon's office to find out about when my surgery would be scheduled.  We met with him and his PA today at 9:45.  They scheduled my 2nd surgery for this Friday to remove the other tumor - giving us the option to wait a few weeks.  In the end, we are going to just have it done this Friday - get it done!  This surgery will be about the same length of time but will not be as extensive with speech therapy, etc.  It was also interesting to find out that some of the symptoms I am having are due to medications (such as jitters, etc.).

Our next step was to meet with the oncologist at 1:45.  Basically, she started by saying that I have Stage IV melanoma in two spots of the brain as well as liver.  They will be setting up a PET scan next week to see if there are any other areas that are affected. 

Next, she went through a total of six different treatment options that are currently available for melanoma.  Three of them she would not consider at this time due to swelling in my brain.  The others include a mix of chemotherapy and clinical trials.  In order to do clinical trials, you must wait 1-3 months after surgery to make sure the brain is clear - so this option is put on hold at this time.  Approximately 2-3 weeks after surgery, they will start me on an oral chemo pill called Temodar which you take 5 pills for a month.  They will also possibly start me on an FDA approved IV called Ipilimumab which is done every 3 weeks (she has to look into this further as she wants to make sure of the swelling issues before starting this drug).  There are other options as well but this is her plan to date right now. 

Right now they basically put you on these medications and then scan within 3 months to see if it has gotten any better, worse or same.  Depending on the results, different options will be made.  She did mention some clinical trials that could be an option down the road but again, we must wait for 3 months to see how things are going. 

We made the decision to ask about best case and worst case for prognosis.  As I think we all have realized from the start, this news was not good!  She stated that prognosis is usually 6-9 months but with the reactions to medications and/or clinical trials in the future, this could prolong my life for years.  She also mentioned that 6-9 months was what she would have said last year and with all of the research and new treatment options that have become available since then, there is hope!

I know in my heart that this is going to be a battle and I am ready to fight!  I'm truly blessed to have an excellent medical team making decisions that I believe are in my best interest at this time!  I'm blessed to have amazing family, friends and a community standing behind me! 

And, I believe in miracles!

 

Feeling Good - 5/23/2011

What is that saying about when it rains, it pours?  :)  Neither of our kids has been feeling good for the last few days and last night Kurt ended up in the walk-in with Nathan at about 2 a.m.  His teacher did call to say that there was 3 cases of strep throat last week so now Nathan is on an antibiotic.  Ashley woke up not 20 minutes after Kurt and Nathan left with 100.1 temp so she'll go in today for meds.  Then Kurt and I will just have to try to stay healthy!

I can definitely tell today and yesterday that I am starting another level of recovery.  It was 10 days post-op yesterday and I am starting to feel a bit more human.  Some days it felt like I was in an outer body experience - all I can think is it must be the meds! 

I am sure my co-workers in special education would have some help for me right now.  The one thing that I am noticing is that my hands are very jittery... not all of the time but some.  I can handle that - I've been told I'm the only one that notices it!  Even some of things that I noticed neurologically (like trying to type something and make it make sense) appears to be better to me right now.  For several days, it felt like I was carrying around 20 pounds on each arm and about 50 pounds extra on each leg.  That actually is not happening right now either. 

Due to my impatience and just wanting to know if they can give us a date, I may call the neurosurgeon's office today to see if they have my surgery date scheduled yet.  I do see the oncologist tomorrow to discuss treatment options, etc but that won't happen until after the surgery anyway.  It would be nice to know when the surgery will be because it is close to the end of the school year, Memorial weekend is coming and right now I am actually feel well enough for a camping trip!

As I sat here this morning, I was writing out my LONG list of many questions for the oncologists and thinking about all that has happened since May 10th.  I was thinking about how I've always believed in God - may not always have gone to church but definitely believe in God.  If I was ever in disbelief about the power of prayer by many, I am definitely not anymore!  

I also thought of the MANY, MANY emails from people over the last several days and it is very apparent that this is something that regardless if you know me and my family, it has changed the way people are thinking about life and some of the trivial aspects of it.  Even walking into Walmart, I can tell people who don't know me have read my blog.  That's what it is there for... please feel free to share! 

I know this has forever changed our family!  What once was maybe taken for granted will definitely no longer be!  I told Kurt yesterday that I've always been a firm believer that things happen for a reason and I am not sure exactly what the reason for this is yet, but I intend to one day find out!

Have a wonderful day!

Wearing It with Pride - 05/21/2011



Fight Like a Girl - Picture Courtesy of Nathan Ball



My dear high school friend, Tricia Bruce Brisson, sent me this shirt!  I am definitely wearing it with pride!  (I just got a little chuckle thinking.... Funny how last week you couldn't pay me to put a picture of myself on the computer.. or show people that I still have snowman decorations up :)

Thank you SO much Tricia!!!!  :) 

(Oh, and my mom and aunt want to know where they could buy one?)

No New Updates - 5/21/2011

It's my usual 3 a.m. wake up... which was fine because I fell asleep at 10:30 (very, very tired) and slept until 3 a.m.!  I will definitely be going back to sleep at some point soon but I thought I would type a little since I've had some questions on what is happening, etc.  I thought I would type up a little and then listen to the people across the street having a bonfire!  :)  They are probably just getting back from a night of drinking at the bars - I was thinking it probably looks like the same thing over here.  When I get up at 3, I am usually very hungry and it seems that even if food doesn't normally taste good during the day, it seems to at 3 a.m.!  :)

There is really nothing new to report ... right now we are waiting to hear when the 2nd surgery will be.  Until then, we are just trying to have a sortof low-key weekend.  I spent a few hours with my mom, my nephew and niece.  Kurt and I picked the kids up from school, went to Applebees for dinner, went to Frosty Treats for ice cream, etc.  We both even got a little nap in!  (Actually, today I had a couple of naps!)  Both kids were fairly WILD today... it was a little trying.  :) 

Tomorrow is birthday party day!  Nathan is excited to go to his friend's party and then since Ashley turned 8 on Mother's Day and we were alittle busy afterwards, we are having a school party for her on Saturday at the bowling alley.  Sunday I am going to a movie with my cousin.  Maybe sometime in here Kurt and I can go on a date too!!!  Other than that, we will wait to meet with the oncologist on Tuesday to learn more (if we don't find out more before then).  I will update more about what is going on after we find out!

Kurt has been doing a little research on the treatment options that were given to us but until we meet with the oncologist, we'll wait. 

I have been trying to relax.  It amazes me how quickly your body starts fighting for you!  I think alot of the 'weird' things that I feel are actually due to the medications they have me on (anti-seizure meds and swelling medications).  Mostly my body is tired - my arms are just TIRED and my legs were today.  It might also have to do with the warm weather too?!?! 

The only other I am noticing is eating .... for someone who LOVED to eat, this is very different for me.  (This is probably the one thing my mom gets most 'annoyed/worried' with me about -- she's my mom and she WANTS me to eat!)  In the hospital, I barely ate anything.  I lost almost 20# in those 7 days (if only I could have done that while I was on Weight Watchers!).  When I got home, nothing tasted right... very metallic.  I'm trying to make sure to eat and get LOTS of water to stay hydrated.  When food tastes good (like the lunch the other day after the liver biopsy and the night with the chicken and mostacolli, I ate and ate and ate).  It depends on the day but my Diet Mtn Dew just hasn't tasted the same.  So, for now... I will just try to eat and stay hydrated!

I think I will wait to post more until I know more... unless, I can type up those 'apologies'...

Have a wonderful weekend!!!!

Thank You's - 5/20/2011

I wanted to send out a quick blog just to thank everyone!  It's completely overwhelming to me how generous people have been.  From the well wishes/prayers/concern, to the food delivered to our door (the first day of real meals that I truly enjoyed since all of this... thank you to Brian and Michelle Anderson and Jon and Sara Beckman and families), the "Fight Like a Girl t-shirt" from Tricia Brisson, the prayer book from a retired co-worker, angels, books for my children on having a parent with cancer, the numerous cards/flowers/emails... I can't begin to thank you all enough!!!!!!  (I've even had a neighbor offer a piece of her liver!)

While I plan to get  thank you cards out to everyone individually, I want to thank you all from the bottom of my heart!!!!

I'm A Girl & I AM A Warrior/Fighter - 5/19/11

It was suggested that I change the title to "I Am a Warrior" so I changed to Warrior/Fighter...

I guess it is now the time to tell what we found out today. As I was typing my previous post about the liver biopsy, the oncologist called. I had him talk to Kurt as I am still a bit drugged and didn't want to miss out on information.

We found out from the oncologist that the tumor in my brain was stage IV melanoma. This now means that in the next several days (not sure when yet), I will be going in to have the second tumor removed. This surgery will not be nearly as extensive as the first surgery but will require the removal of that piece (again, this is on the right frontal lobe - not sure exactly what this part of your brain function is but they were not worried about that as much).

My liver biopsy that was done today (that appeared to not have characteristics of melanoma) was indeed melanoma as well. This means that approximately 2-3 weeks after the second removal, I will start treatment for all. While we are not sure exactly where yet, the oncologist highly suggests U of M or Wayne State. Also, being that this oncologist is leaving the area in the near future, there is already another oncologist on my case here in Marquette. She has worked extensively with the doctors at U of M.

What we know right now about the treatment is that I will begin full head radiation as well as intravenous/oral chemo for the liver. We have an appointment to see the oncologist early next week to ask lots of questions, etc.

The thing about this news is that I am a fighter and plan to fight! I have lots of questions, fears, concerns but mostly, I want to LIVE! I've shed many a tear as I talked to Kurt, my mom, my dad, my brother, my mother-in-law... all of those I love so dearly! I'm sure it is all part of this process and we'll have to deal with challenges together day by day.

Kurt and I talked a lot before our kids got home from school. We decided to not discuss it with them right now (after all, how do you tell them something we don't fully comprehend?) - they are kids, they are worried and I just want them being able to not worry! We've already gotten some wonderful resources from friends and school about how to tell our kids but I want to wait until I know more of what to expect. After all, of anything that makes me tear up about this whole process, it is them!

Liver Biopsy - 5/19/2011

We just got home from having the liver biopsy.  It wasn't bad at all... in fact, I remember moving onto a bed and that's about it!  Took a little nap, complained about having another IV hurting my hand, and WAITED the 3 hours of bedrest before we could leave.  Today was the first time I ate a BIG meal since all of this started - and it was SO good!  (Tasted like salad, mashed potatoes and meatloaf .... not metal!) 

The doctor said the liver test results would be in @ 72 hours but he says it appears (?) to not have melanoma characteristics.  We asked about the tumor board which met Tuesday and it sounds like they are sending the original biopsy for some special staining so that is probably why we haven't heard anything yet.   I do have an appointment next week with the oncologist so we are thinking we might learn more there.  

For now, I am going to take a little rest on the couch!

Half Marathon & Another Amazing Friend (DON'T FORGET THE KLEENEX) - 5/19/2011

Funny how I woke up at exactly 3 a.m.  I did get a good night's rest from 11 to 3 and when I woke up, I kindof chuckled thinking how my body is kindof on a timer.  I think I figured out that I'm actually waking up because I am hungry but then I start 'thinking' and that's fine.  It's quiet in our house, I'm awake and so I thought today I would blog about the subject that makes me cry the most - my family!  Well, I went on to read messages on facebook and quickly decided to change that plan...  (I'm warning you - GET KLEENEX!!!)

There is a group of our girlfiends who have been getting together for a long time for lunches/dinners on weekends.  We usually try to meet about every 4-6-8 weeks but there is often times we don't get together for several months.  Anyway, just so you get the picture... we ALWAYS meet at Red Lobster!  We meet, eat, talk and maybe gossip a little!  It's always the standing joke that if you don't show up, you are fair game to talk about... :)  (Really, we don't say bad things about each other because we LOVE each other!)

We met not too long ago.  Talked alot about our families, our kids, etc!  You know... just those people you could tell anything to!  Some of us have been friends forever; others have entered the 'group' more recently.

Well, one member of this special bunch of friends that gets together with us every 4-6-8 weeks is Tricia Miilu.  I can't remember specifically how I met Tricia!  She's got a vibrant and funloving attitude...  We also share a very special day - we both were married on August 8, 1998! 

Well, when I woke up this morning and started reading my emails on facebook, I got a wonderful email from her that I had to share!  I am sure she will not mind my sharing this - just another way of showing you about my amazingly wonderful friends!!!  (I'm hoping she will send me a picture that I will post...) 

Tricia Bray Miilu

• Half Marathon
  Hey Jodi! I wanted to check in with you and let you know that you have been in my thoughts daily. This past Sunday I ran a half marathon down in Green Bay. I didn't know until the morning of the race that everyone else I was with had dedicated each mile of the race to someone. As I began to run each mile, I would decide who I was going to dedicate it to and then think about them throughout that mile. I began with a mile for my mom, dad, and each of my three girls. Then I ran the next four for a fourth grader at our school who has cancer. The last four miles were for you Jodi. I didn't train well for this half marathon, so my legs fully wanted to give out on me at mile 8.5. I wanted to sit on the side of the road and give up. But, it was just a measly race compared to the marathon that you are running right now. So despite it all, I walked as fast as I could thinking about all that you have done. Walking was all I could do when I felt my body was going to give out. On the last mile, I gathered all that I had and ran as fast as I could. I have never experienced the feeling of my legs hurting so bad that they wanted to give out. But I didn't stop because, even though you didn't know it, you were running with me. You are truly amazing, Jodi! Your strength and positive attitude made me believe that if you could keep your head up through all of this, I could at least keep my legs moving for one last mile. You are truly an inspiration. Keep you head high and that smile bright!

Tricia ~ Thank you SO much!!!!  I'm so very proud to call you my friend!!!!!! 

Roller Coaster RIde - 5/18/11

The original CT scan in the ER showed what they thought to be 2 or possibly 3 brain tumors. the original MRI on that night showed that there was only two (of which, the one has been removed). We were told that after removing the first one, they would determine if that tumor was in fact melanoma. If it was melanoma, they would do an additional surgery on the other tumor to remove it; if it was not melanoma, they will do radiation and chemo to remove the other tumor. We have yet to hear if it is determined to be melanoma and whether I will be going for surgery in the next several days.

We know that the tumor board met on Tuesday morning. Apparently, they meet and talk about you (without you there). :)

They also did a test in the original days to look at other parts of my body. As I said, sketchy at best memory of where I was going for what.

One of the funniest parts of the 'roller coaster ride' was that between having surgery and all of these tests, they took my glasses away from me and I couldn't put my contacts in. So, basically, I couldn't see much of anything. They asked me constantly what day it was - if only I could have seen the calendar in my room. (I must have guessed pretty good.) I do remember going down for my MRI the morning following surgery and 'seeing' people. Sometime after the MRI, I was sent down for another CT scan. I sat in this room with a gentlemen 'watching' Price is Right and drinking our glasses of Crystal Light mix for the test. The CT lady told me I had to drink my two glasses in 20 minutes. The gentlemen had two of his gone before I started drinking my first sip. I was wondering if I could share mine with him but decided not to ask. I do remember him telling me that he was having stomach problems and I was thinking yesterday, "I wonder if I told him what I had just had done." Again, still no glasses/contacts so I couldn't see really well.

I had my CT scan, went back to my room for a bit and then I think I got wheeled BACK downstairs to have a liver test. See, not only did they find that I have a stress fracture in my right hip (explains some of the pain I was having this past year), there is also some question about my liver. This test was tiring to say the least. I had to lay with my arms in the air for what felt like forever. Luckily I was tired so I just tried to fall back to sleep.

Yesterday, we got a call that I need to go in for a biopsy of my liver. Not sure why or what is going on but I will be going in for the biopsy at 8 a.m. tomorrow morning (Thursday, May 19th). I'm not sure exactly what this involves but with all that has happened in the past week, I am not worrying about it.

The only other test that I know that I will need to have in the near future is a PET scan. This scan detects cancer at all levels. We haven't heard yet when this will happen!

Today has been a more trying day to say the least. My arms are tired, take meds is not high on my list of fun and I'm just anxious to one day feel sort of human. But, I know this too shall pass and we'll have some answers and know more of what to expect.

Maybe later tonight Kurt and I can sit and write some of my 'apologies'! :)

Am I Losing My MInd? - 05/18/11

I haven't been sleeping for more than four hours a night. It's been kind of nice to catch up on the shows that I DVR every week. Today when I woke up though, I was thinking to myself that it's almost like I am on this strange rollercoaster ride (because that is the best way at this moment I can describe everything that has happened in the past week). I also had the feeling like someone has drugged me and is hurting me. I know this will get better... it's just funny to feel that way. For anyone who knows me, the most medications I like to take are a vitamin D tablet. So, again, if I am a little 'loopy', it is the drugs they have me on! :) I wonder if this will make me crave a Bud Light someday again?!?!

I thought since I didn't really describe before all of my previous medical history (okay, I won't bore you with ALL of them but some of the WEIRDER ones, especially cancer/melanoma), I would do that. I think I will also try to write some of the many tests and what we are expecting in the next week or two....

Then probably in another blog, I will write some public 'apologies'!


I don't recall having too many medical issues as a child. I did have meningitis as a baby so I had some skin issues but nothing more than that. I can remember at a young age my dad telling me that I am more susceptible to melanoma as I am fair skin, blonde hair, etc. Well, when I was about 3 months pregnant with Ashley, I had a strange mole on my right arm that my OB doc wanted me to have checked. Well, of course I saw the dermatologist when I was about 8 1/2 months pregnant. The dermatologist wanted to take the mole off the next day. I was hoping to wait until after Ashley's birth, but went in the following day and had it removed. At @34 weeks, we had learned that Ashley had a heart condition and I was just so concerned about her and making sure she was healthy, that I didn't give it another thought!

Ashley was born on May 8th, 2003. If you didn't know her medical history, you'd never have guessed there was a problem! The following day (May 9th), I received a call from the dermatologist telling me that the mole I had removed the previous week was melanoma. He sent the surgeon to the OB floor to discuss the surgery that I would soon have. They planned to excise a larger area of my right arm as well as take lymph nodes in my right arm pit to make sure that it hadn't spread/metastasized. This surgery was done on May 20, 2003. All results came back that they had removed all of the cancer and it hadn't spread. I would just have chest x-rays every 3 months for the first year, 6 months for the 2nd year and yearly afterwards as well as bloodwork every 6 months. I've been very diligent about keeping up with these appointments and have had MANY mole removals which have all come back okay.

Move forward to last Tuesday, May 10th, 2011 - I was told to go to the ER on Monday night but waited until Tuesday. Seems kind of ironic to me that had I went in that Monday night, it would have been EXACTLY 8 years to the day that I found out about my original melanoma!

I'll do another blog now with what tests I've been through (because there have been several) and what I am expecting in the next few days/weeks...

Luckiest Person - 05/17/11

I haven't typed in a few days and wanted to let everyone know that it was only because I got extremely tired last night when I sat down to start typing!  :)

Tonight I have to write as it's been an incredibly amazing day! 

Kurt and I finally broke down and washed my hair this morning.  We were both extremely nervous (although, neither would tell the other...).  We did it though!  The picture below shows my half-head of hair the day I left the hospital.  This was taken right before we were leaving after the kind nurse that was on that day helped me wash my hair and shower.  (On my left - the side with the white patch - is the incision... which we counted and has @32 staples; the right side is still a head full of hair!)

After getting ready, I went with my parents to MARESA (my employer) to see everyone.  I think I surprised most of the people there.  I got to see alot of co-workers, I felt like I talked for the entire 60-90 minutes I was there, and quite honestly, I am not sure what I said!  :)  It is an 'effect' of this surgery... I am on medication for anti-seizures and I feel kindof like I am a little drunk.  (I promise my next blog will be about some of this stuff...) 

My parents then brought me to Target.  Kind of funny to see people look at me because of course I look like I've been beat up - my arms have tons of bruises from the different IVs, etc. 

The other day I spoke with my dear friend, Casey Arkens, to see if she would be comfortable and willing to shave my hair off.  It's not the most comfortable to have a half-head of hair so we talked about the possibility of donating it to Locks of Love.  She called this morning to let me know she would do it today!  Kurt and I made our way to Gwinn ...

I don't even know where to begin this part of the story.... Anyone who knows Casey knows that she is the kindest, most sincere person that you could ever have on your side!  If she was able to, Casey would give you the world and then some!!!

When Kurt and I pulled up, she came running out of her house.  She had a hat on her head but then she started jumping around, took her hat off and showed me her newly shaved head!  SHE ACTUALLY SHAVED HER HEAD FOR ME!  (I wish I had a video to capture this moment)... I believe I said, "Casey, what the heck did you do?"  Of course, I shed a tear or two or three...  and wanted to make sure her husband knew that she did this.  (Although, I have no doubt she would have done it regardless of how Mike felt...)

Casey and I after the shaving/hair cutting!
  (FYI... The part above my nose is actually one of the three spots that they had a halo in my head during surgery - the other two are on the back.)

Casey cut my hair for Locks of Love, she shaved Kurt's hair and then my brother, John, even got his head shaved too.  (Sorry John, I didn't get a picture of your haircut but I will add it from Casey's photos...)  Casey took lots more pictures but I couldn't wait to put them on here... 

Casey shaving Kurt's head...

Now is where I will start the tears...  how am I so lucky to have such wonderful friends?  I've always known how dear my friends are to me although I know I was not always good about telling people how much I love them.  I'm completely humbled by how generous everyone has been.  It's very overwhelming for me!

How do I thank my dear friend for making a moment I was looking forward to even more special by shaving her own head for me?  Casey, THANK YOU SO MUCH!  I don't know how I will ever repay you but believe me when I say that I hope someday I can be half of the friend that you have been to me!!!!  I love you with all of my heart!!! 

How do you EVER tell  everyone thanks and truly mean it?

(Tomorrow I will try to type earlier in the day... I think I've got to start my apologies to those who came to visit or called when I was in the hospital - Kurt might have to help me with this one as I hear I was telling people whatever I wanted to say...  More tomorrow!)


I wanted to update some of the pictures that Casey sent me from that special day - here they are:

Kurt and I after our haircuts!

Another shot of Casey and I - she even had matching hair bows but since I couldn't wear mine over my head, we put them on our necks!  :)

Casey, myself, Kurt, Andrew (my nephew) and John (my brother) - new haircuts!!!!



Blogging about CT Scan and MRIs

I'm new to this blog thing so I am just learning...  :)  I will keep working at it....

When I got to the Emergency Department at MGH, they decided to do a CT scan instead of an MRI since I am VERY claustrophic.  The ER nurse brought me down to the CT scan machine.  It felt like a matter of minutes between the time I came back to the ER room and the radiologist contacted the doctor.  The doctor came in the room and I could instantly tell that it was not good news.  (In those moments, I cannot imagine how hard their jobs are!) 

It's hard to remember what happened in those moments after learning this news...  I know I was worried about Kurt and how he was coping.  I know I made a call to my mom - not sure what I said but I remember her crying. 

Again, so much happened so quickly that it is sketchy at best. 

I knew I was going to have an MRI that evening.  It's amazing in sad and trying moments, how the littlest things can mean the most!  One of my high school classmates was the person who did my MRI that evening.  This might not mean much to the average person but for me, it meant the world to have him there.  I'm sure it cannot be easy for them to see someone they have grown up and know and to have to put their feelings aside.  The thing I can say is that it was a reassuring feeling for me to hear his voice giving me the countdown of when the MRI would be done.

This is the picture of the MRI that was performed that night:

The left picture shows my eye socket on the left (by the letter A) and then you can see the mass along with swelling all around that spot.  (The gray matter is all swelling...)  If you look at the picture on the top right, that also shows the same mass (it is on the right in this picture - although it actually is the left side of my brain.)  This part of your brain is called the left temporal lobe and this area is the main center for your speech, your neurological funtioning, etc.  While I am sure there are some effects from this, it could have been MUCH worse!  (The last picture on the bottom shows the same picture - again it looks like it is on the right but it is on the left frontal temporal lobe...)

The picture on the top right also shows another small mass on the right (looks like it is on my left) brain.  This surgery will most likely happen in the next few weeks.  (This surgery will not be nearly as extensive as the other surgery.)



The day following surgery, they sent me back in for another MRI - again, I'm grateful my classmate did the MRI!  This picture shows the amazing work that the neurosurgeon did that day:

For now I will close...  I'll try to type more tomorrow!

The Beginning of this Adventure...

Starting at 4 a.m. on Thursday, April 28th, I woke up with some weird headaches!  I actually had an appointment to see my regular doctor regarding MRI results for my spinal column (previous injury to my right hip) that morning and told him about my headache.  Over the next several days, I dealt with the weird symptoms (and might of complained to my co-workers a bit too)!  :)  Since my headaches weren't getting better, on Thursday, May 5th, I was able to get back in with my regular doctor about my headaches.  He gave me anxiety meds. 

On Monday, May 9th, I again called my doctor's office.  The meds he put me on made me feel horribly!  His nurse called that he was going to switch my meds... 

In the meantime, my mom called the doctor I grew up by  who suggested that because of prior history of melanoma, I should go and get a CT scan.  And, he of course told me to go either that night or the next day. 

Kurt and I went to the Emergency Department at MGH on Tuesday, May 10th at @11 a.m.

Next post ... what happened at the Emergency Department...