Monday, March 18, 2013

Everything Came Back Negative!

  I saw my oncologist this morning and I will see the surgeon this Friday morning.  From my oncologist, the results are negative.  Even the blood test that I had on March 1 came back  negative for Melanoma.  That means I am still NED!!!!!  I have been diagnosed with some inflammatory disease, probably sarcoid. Hard to say for sure which one.  I will have another PET/CT scan in three months on June 10 at 11 am.  Hopefully everything is back to normal and no new changes. 

My neck is still sore, I didn't like having stuff near my neck today.  I kept pulling at my sweater.  I had my name badge around my neck and my microphone on, and my it was bugging me.  It bothers me to turn my neck in certain directions and to raise my head up too far.  It will take time for that area to heal.  I am trying to keep my neck covered at school for now, so the kids won't have to see the incision area.

Sunday, March 17, 2013

John 13:1-17 (Jesus Washing His Disciples' Feet)

      I only went to the service this morning, and the sermon I heard was from John 13:1-17.  This is a familiar story from the night of the Last Supper (Thursday night).  I heard a different perspective from this story.  After Jesus got done eating, he got up to wash the feet of his disciples. Jesus was the Master, he was above his disciples.  This is something that he should not be doing.  Washing one's feet belonged to a servant.  Jesus came to serve not to be served.  In the next 12 hours, Judas would betray Jesus, and Peter would deny Jesus three times.  Jesus knew all of this, but he still chose to wash these two guys' feet.  That is what we are to do.  We are to serve others, basically by asking them, "How can I help you?".  Those who have hurt us.  Those who we are not getting along with.   Those who we do not like.  We are to serve everybody! That is how we can be like Jesus.

Thursday, March 14, 2013

Still Very Sore!

My muscles sure do hurt! It still hurts to cough.  I tried my recliner last night, not comfortable enough, so when I woke up three  hours after going to sleep, I took a pain pill and tried my bed, that was just as bad.  I hurt to move.  I am staying downstairs tonight and sleeping in my dad's recliner.  His chair is much more comfortable. 

I do feel better today, but since I hurt to move, and do not think I can do the stairs well at school, I am taking tomorrow off as well.  I will get dad to take me in the morning to prepare for the sub and to bring stuff home to grade.  I have to be able to move around at school.  I will stay home most of the weekend to rest.  I will go back to school Monday after my oncologist appointment.  By then,  I should be able to move around much better.

This was surgery number four in the past elven months.  That is a lot on one's body.

Wednesday, March 13, 2013

March 12's Surgery Update

I am very sore!!!!!!!!!!!!!!!!!!  Basically from my throat ( at times), but from my breast bone down to my butt muslces hurt.  It hurts to cough. 

  I started at Endoscopy, not out-patient surgery yesterday.  I got there a little before 11:30 and was taken back a little before noon.  My port was accessed twice and got no blood return.  A second lady came over and accessed me again, with still no blood return, but it did flush, so it was good to go for the IV.  They have been told, when using a port, you do not need blood return, in order to start an IV, but did does need to flush.

I was taken to surgery a little before 1:30, right after Dad showed up.  Both nurses had to see my hole, while in the elevator.  It doesn't bother me to show off the hole.  My lung doctor started first, and did the broncoscopy and did the needle biopsy of the lymph nodes.  That came back negative for cancer.  He went down into my lungs, but could not get to do a biopsy of the nodule.  It was very small, hard to reach.  H was using some type of xray to guide him.  Then my surgeon took over and took out a few lymph nodes, and they came back negative.  But due to my history and to play it safe, he continued and took  more out.  I was in surgery for 3  hours.  I was moved to in patient recovery room because of the type of surgery I had, instead of out patient recovery room.

I had a hard time waking up.  I just wanted to sleep.  I had that issue before, I think a couple of years ago, and maybe even in 2007.  The nurses made me get out of bed around 8 to walk and we left before 8:30 pm.  Dad picked us up from out patient doors, and as soon as he turned onto Goodkirk off of Forge St, he had to pull over, so I could throw up.  I hadn't eaten in over 24 hours, and just had a bit of water on my stomach.

When I got home, I went to my dad's chair, and that is where I slept last night.  Where the incision is, it feels heavy and tight.  I am still pretty tired today.  I am taking tomorrow off to rest some more.

I see my oncologist on Monday morning and will see the surgeon on the 22nd.  I will be late to school on Monday and will be taking the 22nd off from school.

On the 25th, I will be 5 1/2 years NED.  I am praying that I still am NED.

Saturday, March 09, 2013

New Surgery Date

I had my ringer on my phone both Thursday and yesterday at school.  I finally got the info I wanted yesterday morning.  Surgery is scheduled for 1:30 pm on Tuesday, March 12 at City Hospital.  I was told to be at out patient by 11:30 am.  Later, I got a voice mail saying to be someplace else by 11:30 am.  I left a message for a certain person at the doctor's office, and she called me back later.  I have to be at Endoscopy by 11:30 am.  That is where the bronscopy will be done.  Do not know if I will stay there for the other part, or be transferred to a different operating room.

Wednesday, March 06, 2013

Lung Doctor Appointment

  I got a sub for the afternoon, went home, and mom went with my to my doctor's appointment this afternoon.  The doctor said it was easier to have me come in than try to explain things over the phone.  Last Friday, the surgeon hunted my lung doctor down at the hospital (lung doctor was in surgery) and my oncologist called him also.  Surgery is not on Monday, but looking like on Tuesday, will know more tomorrow.  My lung doctor is not exactly available to do surgery on Monday, that is why there is a change in the date.

    What will be done during my surgery?  First, a bronchial scope to do a needle biopsy of the lymph nodes.  If that comes back clean, then he (lung doctor) will try to do a needle biopsy of nodules in my lungs.  If that comes back clean (of cancer), then the surgeon will make an incision along my neck above the breast bone, and insert the camera and take out lymph nodes.  If at any point the needle biopsies come back positive for cancer, then they are done with surgery, because that means I am no longer NED (remission) and will move up to stage IV.  If all three come back clean, no cancer, then my lung doctor will decide if I will receive treatment for sarcoid.  Treatment for sarcoid is perdisidone (steroids).  So far, I have not received any treatment for sarcoid.

   Sarcoid and granulomar disease is basically the same thing.  Sarcoid is basically an inflammation of the lungs.  Doctors don't really know how people get sarcoid, but mom and I think I've had it since I was a kid.  Sarcoid can get worse, enough damage done to the lungs that a transplant will be needed.  The doctor said that back in October, I had 83% of Oxygen going from my lungs to the blood.  That was a slight change from February 2012.  I am scheduled for another lung function test in May.

   I called my oncologist's office this afternoon, to see if I could get the blood test results from last Friday.  He told me that I could call this week.  The nurse I talked to said I couldn't get the results until he came back to the office next Monday, he is on vacation this week.

   I think my brother could've had sarcoid also, but he has also never been tested for it as well.

Tuesday, March 05, 2013

Seeing the Lung Doctor

  This afternoon, I had a voicemail from my lung doctor's office.  He wants to see me tomorrow afternoon at 1:15 pm.  I decided to go, because I know that eventually, I would be seeing him this spring.  That means, having to have a sub for tomorrow afternoon.  I wonder why he wants to see me?  I wonder if he has the blood test results for the sarcoid test?

Timmy's Funeral

  Today, was my brother's funeral.  The family had to be at church by 9:30, so we could have our own time with him, before friends came to pay their respects.  It was hard to see  him in the casket.  He still looked puffy.  When I saw his fingers, I could no longer tell that he used to suck his fingers.  I thought they looked good.  I and the house manager spoke about Timmy at the funeral.  It was a nice funeral.  Saw people who I haven't seen in years.  I had a few friends come and I surely appreciate them being there.  Those who came were showing respect because they knew us in someway.  Thank you to all who came to the funreal.  The middle section seemed pretty full.  It was nice.

  I got to choose the poem that went into the memory card of my brother.  Here is the poem:

For those I Love....
For those who love me.

When I am gone, release me, let me go...
I have so many things to see and do.
You mustn't tie yourself to me with tears,
Be happy that we had so many years.
I gave you my love, You can only guess
How much you gave to me in happiness.
I thank you for the love you each gave shown,
But now it's time to travel on alone.

So grieve awhile for me, if you must.
Then let your grief be comforted by trust.
It's only for awhile that we must part,
So bless the memories within your heart.

I won't be far away, for life goes on,
So if you need me call and I will come.
though you can't see or touch me, I'll be near.
And if you listen with your hear you'll hear
All of my love around you soft and clear.

And them when you must come this way alone,
I'll greet you with a smile and say, Welcome Home.

      My brother is in Heaven!  I will see him again some day, and receive Timmy hugs for eternity, but it is hard, but I still want to get them here on earth.  
  Mom and I stopped at the library this afternoon, and I was looking at books for school, and was thinking I wouldn't be able to check out children's books again, then stopped, oh yeah, I can for my students at school.  I used to go to the library to find books to read to Timmy.  I really enjoyed reading to him.  He was a great brother!

Monday, March 04, 2013

Surgery Date

I called the surgeon's office, while we were outside at recess.  I was told that they still hadn't heard back from the hospital, and the hospital wasn't sure if they could add another new person to the schedule of surgery or not.  A couple of hours later, my phone rang ( I had the ringer on and in my pocket), and it was the surgeon's office.  Surgery is scheduled for Monday, March 11 at noon.  I have to be there by 10 am. The surgery will be at City and it is outpatient. 

  I am taking the next day off as well.  I told the secretary that I would call the school on the 12th to let them know for sure if I will or will not be  at school on Wednesday.  I do have an appointment with my oncologist on the 18th at 8:30 am.  I do not know if there will be follow-up with the surgeon or not.  I plan on going to school after my doctor's appointment on the 18th, but that could always change.

Friday, March 01, 2013

Active Sarcoid or Melanoma

  I saw the surgeon and my oncologist this morning and  this afternoon.  I like the surgeon.  He showed me pictures of the scans of my lungs and had copies made for me.  He showed me where the nodules were and where the lymph nodes are that have swelled up.  The lymph nodes are around my windpipe.  The nodules are either Melanoma or scar tissue (Granulomars) which is Sarcoid.  Sarcoid causes the nodules, lymph nodes to swell, and the spleen to get bigger.  Sarcoid is treatable.  I was told back in the summer of 2007, that I had Sarcoid.  One syptom is a cough, which I have basically had off and on since I was a kid.  I had blood drawn this afternoon via a vein,  so it could be tested for Sarcoid.  This test is not the best test, but it is used.  I have not had the bronchial scope done, even though  my lung doctor has talked about it before.  He is going to be brought up to speed by both the surgeon and my oncologist.

I am waiting to hear back from the surgeon's office, but as of now,  I will be having surgery next Friday, March 8.  It is a short, out patient procedure.  A small slit is made just above my breast bone, and a camera is sent down, and he will remove some lymph nodes and they will be tested.  As of now, I am scheduled to see my oncologist on Monday, March 18 at 8:30 am.  The sooner this is done the better for me.

  I now just have to tell my parents tomorrow night after I pick them up from the airport.