Remember To Be Your Own Health Advocate

When you have to deal with a chronic illiness, you must be your own health advocate.  If it is one thing I have learned is that you need do to ask for all medical reports, encluding copies of scans that you have.  You are entitled to them. They are your health records.  Be prepared to read things, number one you don't understand.  And two, you find out things that you really don't want to know about what is going on in your body.  But...and I say but...you need to be prepared when ultimately no doctor will need to ask for your records, which can delay you in anyway for treatment.  I have heard horror stories of lost scans, etc.  Remember people who work in medical facilities are human.  They are no different than the people that work with you.  Things happen. You need to take full responsibiliy for your own health.  No one will do a better job, especially when you face an illiness that can take your life.

I spent an entire day at John Hopkins Hospital yesterday.  The place was unbelievable, and I was only in one building of the campus.  I expected to go into the Doctor's office, one place.  Then go to another place for all the Pre-op that needed done..........Wrong!  I stood in more lines to register, wait, called up for registration to once again sit back down and wait to be called in.  Dropped my paper work off, then wait once again to be seen.  Several times!!  But when seen, I was told, "You have been such a great historian with your medical records.  This will make it easy for us."  That is what you want instead of being aggravated with waiting and making another trip back.  And may I say the paper work you fill out is "many".  Some repeating the same information. 

I did see the surgeon yesterday that explained what will need to be done.  I was very surprised to find out that because of the tumor in my lung, I have already lost 18% of my lung capacity that can not be restored.  The tumor is sitting right at the air passage of the brochial branch.  It has blocked that area of the lung, causing the collaspe.  They will remove the tumor and the damaged part of the lung, recreate a sleeve there and reconnect the air passage.  It will be a 4 hour surgery. 

This all happened so fast.  I received a call Wednesday. Before I got off the phone, I was told when my appointment was, when my pre-op was, and when my surgery is, May 5th.  Just so happened the doctor had an opening.  He is a very renouned thoracic surgeon.  Everywhere I went after that, told me he was the best.  He did say, he was glad that my oncologist was so insistent of getting a hold of him.  (May I add you want a doctor that will spend time with you, fight for you.  If you don't, find one.  It is crucial to your health and well-being.)

I found out more that I ever knew about my disease.  My cancer is rare, but not for John Hopkins.  They see patients like me, because the place to go with rare disease is a research hospital.  They deal with the unusual. I was told that they were not surprised that I had blood clots or that I was hypo thyroid.  This disease messes with my whole endrocine system.  They did tell me that there is a study going on to find out if it is genetic.  Something no one has been able to find out. 

Am I scared, fearful?  You bet!  But I have no other choice.  I know now that it has been twice that I had no idea these tumors were in my body.  God has revealed them thru other medical conditions and tests.  They were all incidental finds with not one symptom of cancer.  I have to remember that God is on my side.  He has let them be seen so that they can be taken care of.  Now could have God just healed me?......YES and He still can.  But I would not be writing this blog if He did this right now, now would I?  (LOL)  Oh, He has a purpose for me.  It would not be the one I have chosen.  But, isn't our purpose in life to help others?  Be His mouthpiece, His comfort?

The answer of course is YES!  And I will be obedient and trust in Him always!

 

The Oncologist Office

I have been going to the oncologist office now for over 2 1/2 years every month for a very expensive shot, to see the doctor and give blood.  I know every employee there by their name and know exactly what there job is.  Infact when I come in they say, "Hi, Mrs Rendulic".  Everyone in the waiting room looks at me and I comment, "Oh I am here way too much."  In fact I am there way too much.  But this comment sort of easys the tension in all the patients, their family and care givers sitting and waiting for their names to be called.  This can be a very depressing place.  You see so much, and hear so much as you sit and wait.  You see young women with wigs and hats which hides the obivious of hair loss.  You see people come in with their special pillows knowing they needed them to have their chemo treatment.  You hear doctors some out and tell the family they really need to admit their loved ones to the hospital because they need to have a blood tranfusion.  You see all kinds of emotions from relief to very sad.  You sit and are grateful that you are just coming for a shot and so far so good.  You always hold your breath waiting and hoping that all is well.  I had that for over 2 years until recently.  When I went 2 weeks ago, I had such an emotional time trying to wrap my head around the fact that yes cancer is back.  It is never what you want to hear and to hear it becomes numbing.  As I was leaving with all my test orders that day, with tears streaming down my face, and me mumbling something like "Sorry, I am just overwhelmed", the office manger of this onocologist came out to me, hugged me and said, "He (meaning the doctor) will take good care of you".  The office manager that maybe I have seen only a half dozen times in the last 2 years was so gracious to me.  As I thanked her, there was a lady sitting in the waiting room watching this and said to me, "Honey, there is God".  I know that but boy I sure needed to hear that at that time.  God is so faithful to remind you that even in the mist of dark clouds and unknown paths to walk down, He is there!   Even when you question, even when cry, even when you ask why me, He is there!  I have a journey to take, even when I do not want to.  But I do know that God will supply every support I need to make it through.  I want to say "Hats off to you who work in the medical field and see things happen everyday.  Hats off to you who support the patients with care and love".  You my friends are amazing....you make my journey easier.....God Bless You!

Tests, Tests & More Tests

As I lay flat on my back 3 times in the last two weeks, I wondered how many white ceiling tiles have I stared at in the last 2+ years.  Somehow they need to make what you stare at more interesting.  I searched yesterday trying to get thru the 2nd nuclear scan for topics, songs, anything to think about instead of the boring white ceiling tiles.  Oh, and did I mention that the scanning equipment is so close to your face and body you can't move.  It is a good thing I am not claustrophobic. 

So I go back to the oncologist today to find out we need to have 1 more scan!  Yikes and this time I get to drink the lovely bottles of contrast before hand.  I've done that before, and boy is hard to get that second bottle down before the scan.  I guess the good news is that both the CT PET & Nuclear Scan did show the tumor on the lung, but nothing on the liver.  Since the last CT Scan I had when I was in the hospital a few weeks back, thought they showed a subtle lesion on the liver, we need to make sure.  But I have been sick with congestion in my lungs again.  More antibiotic just make sure I do not get pnemonia once again.  My oncologist is making a call to John Hopkins to a Oncology Thorax surgeon to refer me to.  And if the liver shows anything I will see a Liver Surgeon also at John Hopkins.

As someone as task oriented as I am, all these prelimany tests are driving me a bit crazy.  Sometimes I thing the tests are worse than actual surgery or what the next step of treatment is.  The world goes on around me and I feel like I am standing still unable to think or plan beyond today.  It's like being in a crowded airport and every plane is taking off for everyone else.  But.....I am grounded and have no idea when my plane will take off.  Okay Lord, I need to be patient and trust in You.  Just hurry up will ya!  (LOL)  I know that He let this tumor in the lung be seen unexpectantly.  I can not deny He is with me.  I wouldn't take this journey without relying on the Lord.  He is my peace an comfort.

Facing Cancer Once Again

Hearing the words "Cancer is back" is just as devistating as it was the first time you hear it.  Cancer is something that happens to someone else, not you.  I remember the first time as well as if it was yesterday.  Looking to have elective surgery 2 1/2 years ago, I needed a lung clearance.  After having a chest x-ray, the pulmonary doctor said that the radiologist saw something on the lung.  He couldn't see it, but thought a CT Scan would be the best thing to do.  Nothing appeared on the lung, but something did appear on the liver.  He said, "You need to see a Gastrologist right away".  A bit frightened, I made the appointment and there began my journey of test after test.  I never thought it truly was cancer...until I ended up at a liver surgeon that said we need to have a biopsy.  Going to the building even where the liver surgeon was, was my first nervous clue.  The building was named "The Cancer Center".  I had my husband with me and a very close friend.  Talk about your mouth becoming dry, and your body beginning to shake as those words pentrated your mind.  God, please not let this be true.  You see I have served God most of my adult life with much perservance and passion.  I trusted Him with all of my life.  I was about to trust Him in an area that I thought I would never face, the dreaded "C" word.  It was an incidental find.  I would have to admit that God was with me.  It happened to be a rare form of cancer called "Neuro Endrocine".  I scoured the internet to see just what it was all about.  Sometime good, sometimes it just creates more fear.  I ended up having a liver resection, 1 month in the hospital, 2 times in ICU, 2 weeks in rehab and a month home recouperating.  I made it through with many obstacles to overcome.  But God was faithful.  Now I face cancer again.  Another incidental find.....and there we begin all over again.  I will write about real emotions, real fears, but my rest and peace is in trusting God.  Thus I begin my second journey.