Thursday, September 30, 2010

New Results

I had a WONDERFUL day.  I was able to go and visit with family that live out of town. They are so great! We made some very special cookies. :) I also got to visit with people in town and eat the last piece of my birthday pie!
Later today I also found out the results of the genetic test. Not the news I hoped for but its news, I learned that I will need to have surgery (the complete lymph node dissection under the left arm). I will know the exact date tomorrow, but it will be sometime late next week or early the following week.

I have lots of mixed emotions about the whole thing.  I started off "knowing" that this is what needed to be done, then maybe not, then yes, then no, now yes, for sure.  Recently I have had a lot of time thinking I wouldn't need it so I planned other things to keep myself busy. It's extremely hard to have those plans taken away again but not impossible.  One great thing is that I can tell I am growing through all this.  I am not nearly as upset about this as I was the last change of plans even though it was for the "better plan".  I'm hopeful for the future and am so thankful that we finally have an answer.


I'm going to take this one step at a time. And pray.  As this all is happening my favorite verse has come to be Philipians  4: 6-7 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
I tend to be a worrier and this verse is a daily reminder that worrying will do nothing but prayer gives me peace, peace "which exceeds anything we can understand"! What a huge gift.


I love you all! Peace and Blessings!
Rachel





Wednesday, September 29, 2010

Learning Patience

We were originally told the genetic tests were happening yesterday, but it turns out they will not be completed until tomorrow.  So sorry about the delay. Haha, SO many lessons in patience are being learned through this whole process.  I'm feeling a bit annoyed about the wait, but I guess I'm getting used to it because its not as nearly as frustrating.  We are getting a lot of feedback from the Northwestern doctor, so that also helps with the waiting process.

Today consisted of going to substitute teacher training, reading Harry Potter, babysitting, and watching modern family and the middle with my family.  Overall a very good day.  :)

I hope to know have the pathology report of the genetic test soon!
Thank you all for your love and patience!
Rachel

Tuesday, September 28, 2010

Birthday/Genetic Testing

I have had a WONDERFUL birthday!! I feel so blessed and thankful to have such great friends and family.  :)  Some highlights were my birthday breakfast bagel (which I so terribly missed last year) a fantastic dvd of home video clips and homemade birthday apple pie.

And...getting down to business.  The genetic testing was done today at Northwestern.  I should know (hopefully by tomorrow) what the pathology report says.  The prayers I need now are for correct results.  No matter what the results are I desperately want them to be the correct ones.  I am praying that all of this uncertainty will, for the most part, be eliminated.

I love you all and hope that you are having a wonderful week!

Monday, September 27, 2010

Staying Busy

Yesterday I was able to go to IU to see a friend on her birthday and then got to hang out with lots of girls from my house.  :)
Today I went to my interview for substitute teaching and was accepted.  I won't start that for probably another week, but I am excited to have a job lined up so that I can stay somewhat busy the rest of the semester.

We still haven't heard anything else, but are expecting to hear the results from the genetics testing on either Wednesday or Thursday.

I will let you know as soon as I find out the results!

Saturday, September 25, 2010

SO Close!

We have word that the slides have made it to their final destination...Northwestern!  YAY!  The tests are only done on Tuesday and Thursday, so it will definitely be after Tuesday before I know anything else.  We are SO close to having the results! I can't believe its been almost 2 weeks since I found out that I would have to postpone the surgery.

It is BEAUTIFUL outside today! Finally its cooling off and feels more like fall.  I had a few visitors yesterday which was so much fun and a couple more people are coming today.  I'm getting more creative when it comes to finding things to do so being at home is not as hard as it was earlier this month.

At this point I'm just hoping that the doctors will be able to give us somewhat of a clear cut answer and that my family and I will be able to make a decision that we all agree on about what to do next.

Thank you for all of your love and support!

Thursday, September 23, 2010

Content

Right now I am still feeling surprisingly content with what is going on.  I am looking back trying to figure out what I did today, and it really wasn't much. I am beginning a new...project maybe?...I don't know if that's what I should call it, but so far its fun.  Even though I spent most of my day at the house, I'm not feeling as angry or frustrated as I was last week.  Huge blessing!
This week has gone by much faster than the last one. Thank goodness! That's probably because I'm getting a bit anxious for the results to come out because I honestly don't know what to expect.  Its a bit nerve racking, but I am so ready to hear the results and come to (hopefully) a conclusion on what is going to happen because of them.

Its almost the weekend!! I get excited for the weekends now because my family is home all day instead of just the evenings.  Its so nice to have a house full of people.

Wednesday, September 22, 2010

Rain!!

It finally rained today! :) An excellent thunderstorm. I was able to enjoy it standing outside on my deck and letting the rain fall on my face.

There is nothing new today in the way of updates but today I had a wonderful time visiting people in town and then going to high school youth group at my church.  We talked about choosing to love others and I am focusing on praying for and loving my doctors even when I am frustrated with them.

Thank you for all the amazing notes and cards!  I am so so blessed.
So much love!
Rachel

Tuesday, September 21, 2010

A tiny bit of news!

Nothing terribly exciting, but we did get a call today that the slides made it to...1st stop...Chicago! yay! They said they should be sending them to their final destination, Northwestern, tomorrow. :) Hopefully the test can be completed and the results given to us by either Friday of this week or sometime early next week.  (Lets just stay next week so we can be super excited if it comes early.)

I had lots of fun surprising people today at IU.  :) I'm still feeling great and I have a few more ideas on what I will be doing in the next couple of weeks while waiting for the results and my final decision.

I hope everyone is doing well and if you need anything that I can help with let me know! I have quite a bit of free time. :)

Monday, September 20, 2010

Smiles

Yesterday was a good day, an excellent day.  I was able to work with the high school students at church in the morning then go shopping with my mom.  I also babysat my cousins last night.  SO much fun! I don't get to see them nearly enough and wouldn't have been able to spend that time with them if I was at school. 

There is still no knew updates but hopefully by the end of the week this week or the beginning of next week. 
I'm also feeling very thankful for all the notes and messages of encouragement.  Thank you, thank you, thank you!
Looking forward to a great day today! :)

Saturday, September 18, 2010

Family

I had a MUCH better day today.  I got to watch my brother run varsity at a cross country meet, saw a friend from IU and showed her around town, and ate dinner outside with the family then read books.  It was very relaxing and I'm starting to realized how thankful I am to have my family.  I was so content sitting on the gazebo listening to music while eating dinner with the family and I really didn't want to spend my evening any other way.

Still no new updates to give you, but hopefully within the next week or two!
I'm doing my best to be thankful for the wonderful things I've been given rather than looking at the things I wish were different but can't change.  A very important lesson to learn!

New Day!

"Those who trust in the Lord are steady as Mount Zion, unmoved by circumstance." Psalm 125:1 ...Woke up to this verse this morning :)

Friday, September 17, 2010

Ups and Downs

Still no new updates.  My mom was told by one of the doctors to stop calling as much so we have no confirmation that the slides have been sent out, but supposedly they were supposed to be off to Northwestern by today.

Today was rough.  Lots of ups and downs. It was one of the first days I've cried in a while, but I also got to see and talk to a bunch of people I've missed very much which was GREAT!  Its hard staying home with no schedule and I can't really come up with a schedule until I get the results back and decide what we are going to do.  I'm starting to feel like I sit around waiting for a phone call or text or a reason to get up and check my email or facebook.  Someway to feel connected and not as alone. I know that everyone has their own lives with school and work and I feel like I can't always interrupt those things. I need something to do too.  I'm hoping this next week goes by a little bit quicker than this week so I can find out the results and get the rest of my semester in order.

I hope that didn't sound like I'm not thankful for the time I get with everyone and the phone calls and texts. I am SO thankful for them and I don't know what I would do without them.  I just don't want my life to run around everyone else's schedule. I want my own schedule. I hope that makes sense and doesn't sound too selfish.

Thank you again for all your love and support!
Lots of love,
Rachel

Thursday, September 16, 2010

Spontaneous Visit

Today I got to go down to IU for a bit.  I had SO much fun and it was such a relief to have something planned for the day.
There is not a bit of new information right now. I really really wish there was.
I'm doing well today and it wasn't as hard for me to come and go to IU today as it has been the other times.  I think this is because I have dates planned that I'm coming back and I have accepted that I am not taking classes this semester.  Now its just time to figure out what I will be doing for the next couple months.
I feel so thankful and blessed to have all of you in my life.  Have a WONDERFUL Friday!....(my Thursday is about over) one plus is I get to go to bed nice and early! :)

Wednesday, September 15, 2010

Crochet Day!

The big news today is that I learned how to crochet!  Haha, I'm not very good yet, but I made about a 2 by 5 inch rectangle. :) Maybe tomorrow I will start on something a bit more useful. I also got to go to a church partnering with ours and try to figure out how we can help them with their children's ministry.  Other than that, today was a pretty boring day.  I've realized that I am going to go crazy unless I have some sort of schedule that makes me get out of the house.  I'm hoping to get a job substitute teaching middle school or elementary school kids.  That should give me a little more to do.

The only other news I have concerning the slides is that it won't be until late next week or the following week that we will have results.  We are DESPERATELY hoping that they will have them sent out to Northwestern by Friday or Monday.

I hope everyone had a great day today! and if not there is always tomorrow :)

Tuesday, September 14, 2010

More waiting

Nothing new yet.  My family and I are trying to keep in touch with the doctors to make sure that everything is happening as fast as it can.  I feel like I've been forced to learn the art of patience throughout this experience. (Still not great at it, but hopefully getting better) Nothing has happened as we planned it and not much has happened on time.
I'm hoping to keep busy this week, as I didn't plan anything because I thought I would be having the surgery.  I did get to go to my dad's school and work with the kindergartners today.  VERY fun! :)
I thank you all SO much for the thoughts and prayers, whether or not you knew that I didn't have the surgery.  I apologize that we found out so late and I couldn't let everyone know.
Love
Rachel

Monday, September 13, 2010

Curveball!!! IMPORTANT: Please Read

I have not been at home the past 5 days, so I guess this has all been going on. My parents, wanting to let me enjoy my time away, decided to keep this to themselves.  I don't really know how to write all this, I don't even know what to think. Its all very confusing.  Anyway...Long story short, the past 5 days the second opinion doctor has said that I don't need the surgery.  Today my surgeon just got the pathology report (in the mail instead of fax) from the second opinion doctor telling him to "postpone the surgery".  Because he sent this my surgeon cannot legally do the surgery. I WILL NOT BE HAVING THE SURGERY.  IT IS POSTPONED.  The second opinion doctor also told us that he was sending the slides to Northwestern to do the genetic testing a week ago when we went to Chicago.  He failed to send those slides so we still do not have the report from that.  He claims to be sending them tomorrow. We'll see.... We spoke to the pathologist at Northwestern and he said that once he gets the slides he will know more, but he said that if the test comes out negative I will probably not have the full surgery, but another biopsy type surgery to test the other lymphodes around it before we do a full lymphnode dissection. If it comes out positive I will still get the surgery, just later.  I'm not going to tell you a date that all of this will be figured out because so far the doctors have been extremely unreliable and I feel like the date will be wrong anyway.  Just a reminder if anyone asks, I am NOT having the surgery on Tuesday September 14th.
 
I am feeling overwhelmed, frustrated, and annoyed with the doctors lack of communication and their lack of ability to follow through with anything they have told us.  If I need the surgery, I want it as soon as possible. If I don't need it I want to know now so that I can figure out what the rest of this semester is going to look like.
I guess it is a good thing we are going through all of this if I don't need the surgery or don't need as big of a surgery.  Its just all a bit ridiculous that this keeps happening.

I'll let you know as soon as we hear something new.  I'm sorry for all of this confusion.
Please keep my whole family in your prayers. This has been the hardest emotional rollercoaster we've ever gone through.
I love you and thank you all for everything.
  

Sunday, September 12, 2010

IU!

So far IU has been treating me very well.  I LOVE seeing everyone and I'm so glad that I was able to come one more time before I get my surgery.  The closer it gets for the weekend to end the more frustrating it is that I have to leave.  I'm doing well though and am feeling so much support from everyone.  I am still nervous for the surgery but right now, visiting everyone is distracting me from it. :)

Thursday, September 9, 2010

Butler Visit!

Today was pretty eventless except for the evening when I got to go to Butler and visit a friend.  It was wonderful and the weather was perfect! :)  I also got to visit the swim team which was a lot of fun and I'm hoping that when I get better I'll be able to go to their meets!
I'm doing well.  Starting to trust a bit more on the surgery thing.  Its happening early in the morning, so at least I wont be as hungry and thirsty as I was for the last surgery. I did realize, however, that I wont be able to drive until the drain under my arm comes out...so for 3-4 weeks I would be happy to have visitors/drivers! (to those of you who were wondering how they could help. ;) )
I'm excited/nervous to go to iu tomorrow.  I'm SO SO SO excited to see everyone, but I'm really hoping that it won't be as hard to leave this time. knowing very well that it probably will be.  I'm still feeling very thankful for all the love and support I'm getting from everyone and don't know how to express it well enough.
Lots and lots of love!
Rachel

Wednesday, September 8, 2010

Purdue Fun! and a bit of nerves

Yesterday and today I was at Purdue visiting friends.  I'm had a WONDERFUL time! My final conclusion is that IU is sooo much better!!! (except for the food courts).  ;)

There are no new updates except the confirmation that I won't be getting a third opinion.  My oncologist feels that even though they are not 100% sure that it isn't melanoma, they are not 100% sure that its not, so it would be better for me to error on the safe side and get the surgery.  This makes sense to me and I'm still relieved that I have a solid plan.  The surgery is scheduled for the 14th of September which is next Tuesday.  Yesterday I got very nervous lying in bed, realizing that I would have the surgery in a week.  Before now it always seemed like a long way away, but now its coming up really fast.  I guess that's good so I can just get this over with.

I love you all SO much and can't wait to have this done and over with. Thank you everyone for all the thoughts and prayers.

Tuesday, September 7, 2010

Rollercoaster

Well I was wrong about having no updates for a couple more days.  My mom called the doctor who gave us the second opinion (in Chicago) to make sure that the slides were getting sent to get the genetic testing that he had suggested.  He then told us that the slides were shipped in the wrong packaging and were busted.  yeah.....so he is going to try and put the pieces together to see if there is some way to look at them correctly, but he believes that there is no way we are going to be able to get the genetic testing because of the condition the slides are in.
I'm feeling again very frustrated.  I feel like when I finally get a handle on how things are going there is always yet another obstacle in the way.  Those slides are very important in letting doctors know how to treat this.
Another update is that we called my oncologist about the genetic testing and he said that whether or not the test comes out positive or negative for melanoma, there (to him) is not enough evidence or reliability to say that its not cancer.  He suggests that I would get the surgery no matter what the genetic results were.
That is not really what I wanted to hear because I had started getting a glimpse of hope that I would not have the surgery however I feel MUCH better knowing that I have a plan for the future. It is comforting knowing what will happen next week even if its not what I had hoped for.  (If we could just keep it that way, it would be great.)
Ohhhh what a rollercoaster....

Off to Purdue today to see some friends!

Monday, September 6, 2010

Uneventful Day

No new updates today.  I feel like it will probably be that way for a few more days at least.  We are still trying to decide the best place to get a third opinion and are really hoping to get it this week because my surgery is scheduled for the 14th.
As I'm still waiting and still unsure of how this is all going to turn out, I've been encouraged with the verse in Ephesians, "I pray that your hearts will be flooded with light so that you can understand the wonderful future he has promised..." Ephesians 1:18  As always it is not the easiest thing to see the unplanned future as wonderful, but it is so great to know that it will be.

Today I swept and dusted the house then cleaned my bathroom and room. (too much information probably), then I worked at the pool. Last day of the summer!  Other than that, I've just hung out at home with the family.  Uneventful day, but that's ok!  yay rhyming.

Thanks again to all who have written me, messaged me, texts, phone calls, they mean the world to me!

Sunday, September 5, 2010

Patience

No new updates yet.  We are looking to get a third opinion this week, possibly at IU, so that we have hopefully two opinions that match up.  I'm still not enjoying the waiting for results, but I guess patience is a good thing to exercise every once in a while. ;)
This weekend has been great.  Luckily I've gotten to work some and friends came home for Labor Day weekend and did a good job entertaining me. :)  I've started trying to learn how to cook things other than pasta and chocolate chip cookies and my grandma gave me lots of recipes. That should keep me somewhat occupied as well.
I'm looking forward to visiting at Purdue, Butler and IU this week!

Love Love Love and Thanks to everyone for your support on this rollercoaster.

Saturday, September 4, 2010

Waiting

These next few days/ weeks will be a lot of waiting for the results but I've finally started letting go of the plans I had for myself and trusting that whatever happens will be better. (Doesn't mean I've let go all the way or feel it all the time, but I'm getting there) Yesterday I enjoyed the BEAUTIFUL weather with my grandma then watched a magnificent sunset on Eagle Creek Reservoir. I realized I wouldn't have gotten do to either of these things had I stayed at IU. I'm slowly beginning to see the possibilities I have being home rather than feeling disappointed about it.  I'm hoping the results come in quickly, but until then I plan on making the best of being home and am very excited to visit friends from Purdue, Butler and IU.

Thursday, September 2, 2010

Speechless....

Today I got up very early to drive to a doctor in northern Chicago for a second opinion.  When my oncologist set this up, he said most likely the opinion would be the same and it would just be a nice confirmation for my parents that what we are doing (the surgery and treatment) is the right thing to do.  I was speechless and confused when he had a slightly different outlook on my situation.
This doctor told me that he still wasn't sure it was, in fact, melanoma....I had been told a week ago by another doctor that if I was his daughter I would have been in for surgery yesterday.... WHAT?!  Anyway, he said that there was a new test that has just come out and has been proven very reliable.  He wants to take the lymph node and skin samples and test a certain gene structure in them.  He said that in 90% of melanoma a certain gene structure is present.  If the genes structure is there, I will still have the surgery and in HIS mind be diagnosed with melanoma.  If it turns out that the gene structure is not there, then he is willing to say that I do not have melanoma and will not need the surgery.  Here's the kicker.  It takes around 2 weeks to get this test done, which is past the date I have to drop all my classes and keep my scholarship.
Feeling:  Frustrated.  Which is very sad I know, considering I just found out there is a small chance that I don't have skin cancer.  Who wouldn't want that?!  I just feel like a puppet with these doctors.  I don't really know who to trust or what to believe anymore.  More than anything I'm tired of waiting for results. I don't want to get my hopes up again for something that may not be true.  It is also frustrating if it isn't melanoma that I would have to go through any of the tears, phone calls, blood tests, dropping the semester, worrying, worrying all of you.  It just doesn't seem fair.   I wish I was feeling a little more thankful than I am right now.  I know it may be good news, I'm just again feeling very out of control.

I love you all and I'm sorry that this isn't the happiest of my writings.
Love your friend,
Rachel

Wednesday, September 1, 2010

GOOD NEWS! :)

The spot on my tibia is just a benign bony structure and NOTHING to worry about. :) Its been a while since I've gotten all good news, so I'm feeling very happy.  Thanks again for all the thoughts and prayers!
Much love,
Rachel