An Educated Guess

I remember 3 years ago when I was first diagnosed with liver cancer.  I was terrified and wanted to know what the out come would be, how much time to I have left, what is this cancer, etc.  You want all the answers right then.  I searched the Internet feverishly trying to find all I could about this type of cancer I had.  Sometimes that is not a good thing.  It places fear in you. And it is hard to read all the statistics of what it can do to your body.

A good friend of mine was diagnosed with breast cancer about 1 year before I was.  She confirmed to me that she also wanted the answers.  We understood each other and came to a conclusion that doctors only can give you an educated guess on what may or may not happen.  After all they are just practicing medicine.  That is why they call it "the practice". If you are not the one who has cancer, you really do not understand completely the devastation you deal with each day.

Yesterday, I went back to the oncologist to begin my monthly treatment shots once again.  As we discussed what a nightmare this surgery was, he remarked, "You are alive aren't you?"  Now, I do understand that he sees such very sick people everyday and according to all that see me, they think I look great.  It was not the remark I wanted to hear.  Understand yes I am alive, but it was a very close call that I never want to experience again.  As we talked, he began to tell me of trials on possible new treatments that were not yet available.  But his final statement gripped fear in me once again.  He said, "I believe that we can get you another 5 to 10 years.  I know you want 20, but."  And then he grinned and shook his shoulders.  You are darn right I want 20!  That statement stayed with me all day, and I had to fight that off every time I heard it echoing in my head.

This morning, my devotional was right on time. The scripture reference was from Jeremiah 17: 7-8: Blessed is the man who believes in, trusts in, and relies on the Lord, and whose hope and confidence the Lord is.  For he shall be like a tree planted by the waters that spreads out its roots by the river; and it shall not see and fear when heat comes; but its leaf shall be green.  It shall not be anxious and full of care in the year of drought, nor shall it cease yielding fruit.

I had to shake off fear and remind myself every time I hear in my head what the doctor said, that my hope and confidence does come from the Lord.  He is the author and finisher of my faith.  He is in ultimate control of my life.  I am a firm believer that your days are numbered.  When your number is up, it is up!  Psalm 139: 16 - your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.  When the Lord is ready for me, I will be no more and not before.

It is so easy to focus on your fatal disease.  My mother always worries about the "what ifs".  In fact we have a running joke in the family..We call it "Grandma Worry"!  The doctor told me that my cancer is not curable.  Well my God says that it can be!  I can not keep looking for the what ifs.  I need to look forward to what can be.

My hope and confidence is in God, not man!

Every Hair On Your Head

"And even the very hairs of your head are all numbered"  (Matthew 10:30)

Well I must say that the Lord is spending less time each day counting mine!  (LOL) Once again I am losing hair.  The last time this happen was 3 years ago when I had my first surgery for liver cancer.  I began to lose hair about 8 weeks after surgery.  I really questioned God and said, why??  I am not taking chemo or radiation and yet every day I get multiple hairs coming out when I wash and dry it.  His response to me was daunting, "You would not feel what it was like unless you experienced it".  That was my first ingling that God was going to use me to help others facing serious illness.  At this time when I asked my primary care doctor about it, she remarked, "That when the body goes through such a tremedous stress, your hair reacts about 6 to 8 weeks later."  Great!  Just what I wanted to hear.

I lost quite a bit of hair and had to resort to buying hats and wigs. I will never forget going to a department store looking for hats, and I was wearing one at the time.  The sales clerk said, "So your into hats, huh?"  I quickly responded and said, "No cancer!"  Oh it just came blurting out of my mouth.  I left with hats in my hand, tears filling my eyes and hating the whole experience. 

It was a few weeks later, when I was wearing a hat everyday to work, that a co worker of mine offered to take me to a wig store close by.  After all, I thought I might be losing hair permanently.  When I took my hat off to try on wigs, she looked at me and said, "Oh it really is looking very thin".  I began to tear up and tried my best to get my composure.  I ended up buying a wig that day.  I began buying another wig, scarfs, anything that would hide my head.  Just so you know, your hairdresser can style a wig to fit you.  Mine did and I got a lot of complements on it.  But I hated wearing anything on my head...it was itchy and hot!  But you endure what you have to and I did.

My hair did return, but now I am facing hair loss once again due to stress my body has had during this last nightmare surgery for lung cancer.  So my husband says, "Well we have been here before, it will grow back."  That statement was true, but when you are losing handfuls of hair daily, it effects you emotionally.  Each time I brush my hair and run my figures thru it, some comes out.  Ugh!  It never feels good for a woman to lose so much hair.  I find my self looking at every woman's hair wishing I had their hair.  Dumb I know, but your confidence just plumets no matter how or how much hair is lost.

So hair!  Never doubt the importance it is to anyone facing hair loss due to illness.  It is devasting even the 2nd time around.  Okay God, second time around.  Can this be the last?

Know your Medications

When I was in the hospital the staff was giving me a medication at night that I repeatly said, "What is this for?"  I was told at the hospital and at rehab, "It is to help you relax and sleep".  So, not having much control I took it. 

During much of that time and even when I got home, I truly could not get control of my emotions.  I was on edge, cried a lot and sometimes for really nothing.  No matter how much I tried I could not get a handle on it.  I finally out of desperation looked up this medication.  I was shocked at what I read.  This drug was used to treat Bi-polar patients.  I was and never had issues with this.  I asked the visiting nurse and the physical therapist why would I be on this drug.  The therapist was shocked.  She has 2 autistic kids and told me that this was a very powerful physcotic drug.

I then went for a follow-up appointment at the surgeon's office.  They had no idea that I was on this and said, "Well sometimes when you are in ICU the drugist at the hospital pharmacy makes decisions on what may work for you at that time."   That is not a good sufficient answer as far as I am concerned.  This drug messed with my brain.  I know mistakes are made all the time, but when it comes to your own health, you do not want to be the one they mistreated.

The bad part of all this that I had to wean myself off of this drug and deal with nausea and feeling awful.  I am on the other side of this, but it is a good example to share with you.  Doctors, nurses, pharmists are human and make calls that may effect your health.  Do not in way shape or form hesitate to find out what you are taking!  Especially if you are feeling out of sorts and have unusual symtoms.

I hope that my experience may help you.  You know your body.  Do the research!  It may save your life.

My Expectations Are Too High

Why is it that the mind can decide you can do more than your body will let you?  I want so bad to be back to normal with expectations that are not realistic. Even though I am making progress week to week, it just is so disheartening when you want to do more.  The weakness is sometimes overwhelming.  Both the doctors, and physical therapy tell me that they do not expect me to back to work any time soon. 

Here I sit day after day depending on others to get my meals.  They tell me for every day I spent in ICU is a one week recovery.  Are you kidding me?  I spent weeks in ICU.  It gets lonely.  You sit and watch the clock all day long.  I've cried and felt sorry for myself.  I tell you all this because I want you to know I am just a normal human being that has feelings, struggles, and hates every minute of it.  But....here I am.  I have survived death.  God did not call me home.  He has a plan and I have to trust in that.

I had a great reality check when I recieved a card in the hospital from my sister-in-law's sister.  She is someone that has battled with cancer, lost her jaw, and is unable to this day to eat.  Yet she continues to cook and feed her family and lead a productive life.  My sister-in-law calls her, "my hero".  She wrote in the card only this, "just one day at a time.  Take it from someone who knows."  I read that and I cried and cried. 

This is a battle and I feel every struggle, emotion, and frustration.  I am not immune to any part of this journey.  No one really understands unless they are the one going through it, not even family.  I will get better.  Not in my time, but in God's.  I have trusted my whole life and will not stop now.  He has a purpose.  Not easy, not fun, but my hope and trust is totally in God.

I have to remember that God is working for His purpose.  God has called each of us for His purpose.  Each of us will have a different journey. I will walk out mine, will you?

When Everything Becomes Critical

It is almost July, and I fill like I have been to hell and back.  On May 5th, I had surgery which did go well.  Came home 5 days later and did not feel well at all.  Much pain, pain meds making me sick, vomiting, etc.  On Friday evening, I told my husband call 911.  That began a nightmare.  You can say that I was wise enough to call 911.  I was bleeding internally. 

Of course I did not really know how critical I was.  I was in and out.  Rushed back to John Hopkins.  They could not get me stablized but decided to perform emergency surgery.  From that point on I lost 2 weeks or more.  I was on a venilator and they put a trach in so that I could breath.  And there I was in ICU not knowing what happened.  I was very close to losing my life once again.

If you read the operative report, it becomes such a scary scenario.  My thoughts was  "Oh God, why did you allow this to happen!"  I fought hard to get out of ICU to a room.  I fought for a bed that I could get out of.  I wanted to get moving and out of this nightmare.  I had a trach that was such a burdensome situation.  I was on oxygen.  I was on so much medication.  My emotions were up and down.  Was I scared?  Oh yes I was.  All I wanted was to get home and be with my family.  I want my life back! 

I then went to rehab for 10 days and fought once again.  I wanted this trach out.  I continued to fight to have this taken out.  I did not want to go home with this.  I negotiated  with the Doctors in rehab.  I did it!!  It is out on a Friday and I came home the following Monday.

I am home, but my endurance level is awful.  My emotions are all over the place.  I have physical therapy at home.  This has been such a hard road.  I am reminded time and time again that I almost lost my life and it will take time, and one day at a time.  I hate being in this position.  Depending on people and there is not one thing I can do about it.

So, why did this happen?  I know that I need to write about this.  I know that I need to reach out to others with cancer and serious illness.  I know that I surely feel all the emotions, physical limitations, etc.  If I did not go through this, how can I relate?  I know that God kept his hand on me and allowed this.  I know that I am alive because of his hand and all the prayers of all of you!  James 5: 15: "And the prayer offered in faith will make the sick person well."  I and those like me need and depend on your prayer!!

All I can say is that I must really be a threat to the enemy's territory.  Back up because I will not go down easy, not until God calls me home.  I may get discouraged, cry, and question.  I feel like Job, when everything goes wrong that can go wrong. My emotions are real.  You will never know how someone feels unless you walk in their shoes. 

And I can say that I have.....................!

Battling Emotions, Anxiety and Fear

Okay, so surgery is in 2 days!  I do not care who you are or how strong you think you may be.  It is so natural to go through all kinds of emotions and fears when you face a serious surgery.  I was talking with my neighbor this morning before heading off to work.  She said, "Norene I do not know how you deal with the anticipation of cancer surgery".  She herself faced cancer, but she never knew until she woke up from anesthetic and surgery had happened. 

It is not easy.  It is a thought that never leaves you.  You wake up in the middle of the night, you think about it.  You wake up in the morning, you think about it.  You drive to work, you think about it.  When you have been through cancer surgery before, that trust me was a nightmare that I would like to forget, your anxiety level escalates.  All I can think about is how the doctor described the procedure, ugh!  My anxiety kicks into high gear.  I like to call that, "The what if's".  Well I have to remember that God does work on the "what ifs".  He tells me to "Go forward in Faith".  He got me through the first time, He can do it again!

I remember a plaque that was given to me years ago by a very good friend.  I faced gall bladder surgery right after the birth of my second child.  It read, "Fear knocked on the door, Faith answered, No one was there!"
Fear can paralyze you, and grip you like a vice.  But we have to remember that God does not give us a spirit of fear, but of love and a sound mind.  We all have a choice.  Yes, emotions are there and they are up and down continually.  It is how we handle them that matters.

I read a devotional the other morning by Joyce Meyer that hit right on the money.  She said, "I have discovered that no matter how doubtful I feel, I can decide to go forward in faith.  My feelings are not me.  I am greater than my feelings and so are you.  Going against your feelings is not always easy because feelings  are frequently very strong, but stand against them until you enjoy freedom is much better than continuing to let them run your life and hold you in bondage."

I know without a shadow of doubt that God allowed this tumor to be seen incidentally once again.  I know that He is with me.  So, when the feelings are strong, I must and will choose to "Go forward in faith"!  It is not easy at all.  But I must put my trust in God.  He is my protector, provider and healer!

What do you face today?  Are you being led by your feelings?  Remember, it is how you handle them that matters.  You feel every emotion that can bring you down, but you do have a choice. Stand strong and choose to "Go Forward in Faith" with me.

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!