Check up with Oncologist

  I saw my oncologist this morning.  My bp was good, and since December 26, I have gained 9 pounds.  I have until February 24, to loose that weight.  I was doing really good staying within a 4 pound range while on the steroids.  I have had more energy the last three weeks, compared to how I was the previous 6 -7 weeks before then. 
   I will be done with the steroids on Monday!  Yeah!  I was originally scheduled to see my lung doctor on Monday, but that appointment has been cancelled and rescheduled twice.  I am now scheduled to see him on Monday, February 24. Will see if that stays or gets rescheduled.  My oncologist is allowing my lung doctor to schedule my next CT scan. 
   I am scheduled to see my oncologist 8 days before my birthday.  So, if this scan comes back clean, then I will go a year after July's visit before I see my oncologist.  After next month's port flush and blood work, I will start going about 6 weeks in between port flushes.  I don't do that now, but will start doing that. 

God Thing

    My last  post, I talked about how I haven't been feeling well, and it has been three weeks of this.  I saw my oncologist this morning, and I can say I  was actually looking forward to seeing him.  The appointment got moved up from the 29th to this morning.  I explained everything that was going on.  I had blood work done.  My vein was accessed for drawing blood.  White blood count was 5.1, normal.  Platelets okay, and my red blood count was down to 3.6, making me anemic.  My doctor made a comment that maybe I am now suffering from migraines.  He said to drink a bit of caffeine when I get a headache.  I have a headache most of the time.  He did request a ct scan of my head/brain.

   I go see the scheduler, she said it could be up to three weeks for the CT scan.  I asked if by chance there was an opening today.  She called, and City Hospital happened to have one this afternoon.  That is so God.  I am so glad it was at City Hospital.  I was told to drink a lot of water, and that I could have lunch.  My appointment was for 2 pm.

       No issue accessing my vein this morning.  The nurse tried my arm, and boy did it hurt, she flushed the vein, and I complained of the pain.  She flushed it a second time,  then the vein blew.  That area of my arm hurt.  I was not willing to try another vein, so they called for a nurse and she accessed my port.  I had the scan, then came home.  I ended up taking the whole day off from school. 

   Getting an appointment today at City was a good thing.  City hospital is the only place that will access my port for scans that require contrast. 

  I will get the results next week, when I call my oncologist's office.  My doctors are not sure what is wrong.  I hope I can find out soon, so I can start to feel better.  Maybe then, I will start to sleep better.

Postponed Again!

Yesterday afternoon, I called my oncologists office to find out if they had heard back from my insurance company.  All I heard was that it had been postponed.  Since the scheduler didn't call me back, I called back this morning and was able to talk to her.  I was turned down again.  They said something about 180 days in between scans, and that my doctor can appeal it.  My doctor is appealing their decision, and I should hopefully know within 30 days.  I have been making plans, and will probably have to change something, depending on what I find out.  Until then, a CT scan has been scheduled for October, just in case. 

Last Week's CT Scan's Results

  Last Friday, June 28, I had a CT scan.  I saw my oncologist this morning.  Lymph nodes and lung nodules are still they same.  They haven't shrunk or gotten bigger.  My spleen has gotten bigger.  As of now, I have a PET/CT scan scheduled for next Wednesday.  That can be cancelled due to my insurance.  My oncologist will tell them there are new symptoms due to my spleen. If the PET/CT scan is cancelled or comes up inconclusive, I will have another CT scan in October.

  My oncologist does not want to do another biopsy.  If he tries to biopsy my spleen, there will be a lot of bleeding.  The problem with this is, is that I have sarcoid.  With sarcoid symptoms (when it is active), it makes it look like the melanoma is back.  Sarcoid and Melanoma have the same symptoms. Sarcoid is an autoimmune disease and I will have it for  life.

  In three weeks, I see my lung doctor, and I will find out then, if I have to start taking steroids.  If I do, steroids are supposed to shrink the lymph nodes.  I do not want to start taking steroids, because of the side effects. 

Insurance Company Said "NO"

I was scheduled for a PET scan this morning.  Late last Friday afternoon, I had a voice mail from my oncologist office. (I had left my ringer off even after I got home.)  I have to get permissions from my insurance company to have a PET scan.  My oncologist ordered it back in March, to see what my lymph nodes were up, three months after surgery.  My doctor even had talked to my insurance company about why I needed it, and they didn't change their minds.  I am now having a CT scan on the 28th of this month. 

I kept my appointment for getting my port flushed, since it had been five weeks.  I talked the scheduler, for my oncologists office,  into getting an order for blood work for this morning.  I usually have blood work done a couple of weeks before my CT scan. I waited for the results, my white blood count and my platelets have  both dropped below the low end of the normal range.  With all of my bruises I have,  I am a little concerned.  Not sure if this is due to the Sarcoid or something else, I am keeping Wednesday's appointment with my oncologist.  I will see him again next month to get the results of the CT Scan.  Even blood pressure was a little high this morning.

My appointment with my lung doctor has also been pushed back to the day before my birthday.

Where Sarcoid Can Be Found

Back in February, I had a physical with my personal doctor.  She found a spot on my upper thigh.  I showed it to my oncologist, and he said to show it to my dermatologist.  I saw her on Monday, May 13.  She looked at it and to play it safe, removed it via laser and had it tested.  For being a Melanoma survivor, I have pretty clear skin.  I got the results back today.  It is Sarcoid.  I was told that Sarcoid can be found on the skin, not just in my lungs.  She will send a report to my oncologist. 

  My lung function test I had a couple of weeks ago, came back fine.  I will find out on July 1,  if I will have to start taking steroids.

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.

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.

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.

I think this is scare #6

So far, February has been a rough month, and March will also be rough.  Last Friday (2/15) I had my CT scan with contrast.  I saw my oncologist this morning for the results.  As the title says, another scare that my cancer is back.  What did the scan say?  Lymph nodes a little worse and they are not easily accessible; small nodules in both lungs 2-7 mm in size and too small to be biopsied, and my spleen is 2 cm bigger. My blood word I had done on the 5th cam back good.  I found out today that I was diagnosed with granuloma disease two years ago.  Go to the following website to find out more information about granuloma disease: http://www.nlm.nih.gov/medlineplus/ency/article/001239.htm. From reading this, I think my brother also had granuloma disease.  According to the website, it is an inherited disease, so both of my parents are carriers.

Next Monday (2/25) I will have a Pet/CT scan.  That Friday (3/1) I will be seeing a new doctor, a Cardiothoracic surgeon in the morning and see my oncologist early that afternoon.  I googled the surgeon, and from what I read, he is to be a top notch surgeon/doctor.

Depending on what the PET/CT scan says will determine the next steps.  Biopsy? Surgery?

It seems like every year, I have a scare of some kind.  I am tired of having a scare every year.  When can I go a year without scares?

Father,
      I know you know what you are doing?  You have plans to prosper me, not to harm me.  Please give me the strength to get through this.  I also what you to be glorified during this time.  Please use me in whatever way you deem.  Your will be done on Earth as it is in Heaven.  I am not happy.  This on top of Timmy's death, and the stress of the school year seems to be too much bear.

Amen