Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, February 15, 2013

Expect the Unexpected ....Part 1

Meagan is on a good streak health-wise.  She has avoided any more flu viruses and is a happy and very stubborn girl as of late.  She has been making some progress in her PT.  We have seen her time increase in her ability to handle supported sitting and we are excited to see where that leads in the next several months.  In addition to being very lucky health-wise, we have also been so lucky as of late with her seizure meds.  We seem to finally be at a good therapeutic level for Meagan.  If we reach February 23rd with no change in that pattern, that day will mark 3 months of no seizures!  I feel this is a major factor in Meagan's recent good streak of development.  I'm very excited about this, but also hesitant.  With each passing day I have the mixed reactions of relief and suspense. I am so happy she is enjoying seizure-free days, but this is so new that I also find myself holding my breath just waiting for the one day they return.  For now, though, we are extremely thankful for how she is doing. She is such a joy and I love seeing her thrive and grow.  She is still having a lot of struggles with feeding, but I will save that for another post.  She has not made good improvements in her eating, and has not gained weight so we are now in the process of getting a consult to go back to her GI doctor and talk about long term plans for her nutrition. I will update more on that once we meet with him and know exactly what path we are going to take.

It's funny how life throws you a curve ball just when you think you have it all figured out. With Meagan being in a good streak, I've been taking the time to finally catch up on myself.  I had found a lump behind my ear last November.  I had no idea how long it had already been there, but, it was only about the size of a pinhead (think the big color push pins our moms used and would stick in the pin cushion).  I decided I should probably get it checked out since it was in such a strange spot, but then came Thanksgiving, the end of the school semester and a bustling Christmas season, and, I completely forgot about it.  Fast forward to after Christmas.  I was going to put in a pair of earrings I had received as a gift.  Since it had been a while, I decided to clean my ears first.  As I ran my finger down the back of that same ear, I felt the lump again and remembered.  Except this time it was easily palpable.  This time it felt larger.  Then I knew I had to get it checked out.

The first week in January I went to see my Primary Care doctor. The lump was honestly a secondary reason for my visit because I was more concerned about my fatigue and weight loss that had been happening.    Dr. L was very thorough and her first thought was thyroid.  She ran the gamut of thyroid tests, and to be honest, I was hoping for a positive result so I had an 'easy' reason for my symptoms.  Of course, all the tests came up normal.  So now it was on to the lump.  Dr. L examined it and said she really wasn't sure what it was.  She said considering its location it was probably a cyst or a large lymph node.  She mentinoned the possibility of it being a tumor, but said that would be a strange outcome because normally tumors in that area are seen below the ear or in front of the ear.  She sent me off to an ENT because she said they would know better what it was.

A few weeks went by and I got in to see an ENT.  At my first visit, the doctor said much of the same that Dr. L had said.  ...."probably a lymph node or cyst.... probably not a tumor.... etc..etc."  She said she would refer me to her partner for an ultrasound to see for sure what was going on.  The following Monday, I returned to the office for the ultrasound.  The ENT put the ultrasound wand on my head behind my ear and the first words out of his mouth were "Oh wow..well it looks like you do have a tumor there sweetie....."  Well, not exactly the sentence I was hoping to hear!  Right then of course my nerves took off in another direction.  He said because of my age and its odd location he wanted to do an FNA (Fine Needle Aspiration) to see if they could find out anything about the cells making up the tumor.  Basically, they were trying to see if they could pull any cells to help them figure out if it was benign or malignant.  He said results could take up to 2 weeks but he would order them STAT to be back in 3 days. He also said because the needle takes such a small sample, it is possible to not get enough for a firm result. He did three passes with the needle - trying to get as much as he could, but I could tell he was having trouble. He said the tumor was in such an odd spot he was having trouble reaching it.   Tears started to stream down my cheeks on his last pass...it hurt..and hurt really badly.   But all I could think of was all Megs had been through and I just kept focusing on that to keep it in perspective. When he was finished, he said we would still aim for a 3 day result and I made a follow up appointment for Thursday.

Finally able to see what I have been feeling...a tumor in my right parotid gland 

Those 3 days were definitely the worst days of my life.  Knowing something that isn't supposed to be there is growing in your body, and knowing that it can be something bad is unnerving.  All that swirled through my head were my girls, their care, everything I do with Meagan, everything I do at home.  I was calm on the outside but inside I was freaking out.  There is really no other phrase to describe it.  Luckily I had good friends and family keeping me busy.  I don't think I've ever eaten so many fries or pieces of candy trying to distract my mind from the test results (and that's not an exaggeration).  Finally Thursday came and I sat nervously in the exam room. I remember just staring out the office window at the rain counting the seconds until the doctor came in.  It seemed like an eternity.

Leave it to the day of my results for the doctor to be called out...meaning the doctor at the office was seeing a double patient load.  My wait was over an hour and I was shaking.  The doctor finally came in to talk to me.  She was not the doctor who had done the ultrasound and the testing.  She told me the results.  Basically, they were inconclusive.  It felt like a brick wall hit me.  There is such a disappointment when waiting for important results only to have no conclusive answer available. He did say the biopsy was able to pull one type of cell that was in the tumor, but, didn't get enough information to make a firm finding.  That said, she told me she was "sure" it was "probably" benign because "85%" of tumors in that area do end up benign (unless they find a malignancy inside the tumor after it is surgically removed).  Those who know me know this did not sit well with me.  Basically, I got a non answer.  I am an answer person.  Don't tell me statistics.  Don't tell me what will "probably" happen.  I don't bet on statistics.  I bet on fact and firm answers.  Because of the uncertainty, as a next step, they scheduled me for a CT scan of the head and neck.

 Meanwhile, I went back a few days later to talk to the original doctor who suggested having it removed either way.  From researching, I knew this was probably the next course of action, and frankly, I was glad.  Normally I'd never rush into surgery.  But with a tumor that had grown in size, and not knowing 100% what it was, I wanted it out. And as soon as possible.  Also, another underlying factor is my profession (outside of being a mommy of course).  I'm a musician...a flutist.  This tumor is near and starting to push on a bundle of facial nerves that controls the right side of my face.  Even if post surgery it shows the actual tumor is nothing harmful and never would be, I still cannot leave a growing tumor near such a sensitive area.  If I do, excision will become much more complicated, and the risk of damaging those facial nerves will grow.

After all the surgery talk was over, I met with the scheduler to talk about dates.  They could get me in by early March, but then a few things happened that I didn't like.  First, the original ENT surgeon wanted to schedule me at an outpatient surgery center not near a hospital.  It is an outpatient procedure, but, I have never been under anesthesia before.  If something goes wrong, I don't want to have to be rushed to a hospital.  I want to be in a hospital. Secondly  the surgeon told me to go ahead and cancel the CT scan.  They would just go in and remove the tumor since we were now moving forward with surgery, so no need to get a CT scan done.  I highly disagreed.  The very fact that there is a foreign tumor growing behind my ear makes me want to get the CT scan more.  I need the peace of mind to see everywhere in my head and neck and know for sure there are no other questionable areas.  I need the peace of mind knowing that when they do remove this one, there were no others at the time to worry about.  Thirdly, he was willing to risk letting it grow more to watch it, if I wanted to put off surgery for a while....fully knowing I am a musician and any impact on facial nerves could have a detrimental impact on not only my playing and teaching career, but, the way I help support my family, even if a little bit. More importantly to me, the longer these tumors stay and grow, the more likely they are to degenerate and turn malignant as time goes on.  It didn't matter what the percentage was - I have 5 kids and a husband counting on me, and there was no way I would take that chance and then say in 6 months, "oh I should have had that out 6 months ago." ....

So here we are, stuck in a sort of "limbo" for the time being.  Tomorrow morning is finally the Friday of my CT scan.  I was able to talk to some friends in the medical field who gave me the name of a very reputable ENT surgeon that works out of the hospital.  The doctor had no openings until April but after telling them my situation, his office called back and said he would be glad to work me in Monday morning. As in, 3 days from now Monday morning. I felt "yes, this is a step in the right direction."  The new ENT also said that he would be glad to read the CT scan with me right there at my appointment on Monday and go forward from there to make a plan. I feel the direction I am headed with this new surgeon is going to be much better, and he will do a more thorough job not only with the surgery, but with my monitoring afterwards.

It's funny how when something is wrong with one of my kids, I am immediately in to "mama bear" mode and pushing forward to get the best result possible.  I tend to worry or feel fear after the fact, once everything is resolved.  Now that it is me in the situation, I have felt fear first and had my fight grow as the days have passed. It's not a fear of anything for me, but a fear for my kids and my family.  It's the knowledge that I do "everything"  for my family,and knowing that until I have this mass out and sent away to pathology, I'm dealing with an unknown entity (with which I do not do well) :)  

On the way home tonight I was listening to a cd and thinking about this whole situation. One of my favorite songs came on...... "hold on.. to me as we go.... as we roll down... this unfamiliar road...."  The lyric really spoke to me.  I remembered that although I'm facing an unknown, I need shake off the fear, and grasp on to those close to me until I have my answers.  I need to have faith that God will guide me along the way and pray.  And whatever the answer is on surgery day, I have to trust that it will be ok.  I will be sure to keep everyone posted as we chip away at the appointments before surgery day.  Please continue to pray for Meagan as she always needs your prayers.  But I would also ask for prayers for my girls, that they be patient with me as I am a little on edge lately.  Prayers for my dear husband who I know is deeply worried on the inside.  And prayers for me, that this process moves along smoothly and after all is said and done, everything will be alright.

"....."Fear not, I am with you; be not dismayed; I am your God.  I will strengthen you, and help you, and uphold you.........."
- Proverbs 41:10


  1. Lots of prayers coming your way for sure and I hope everything comes back completely benign and the resolution is very swift.

    I too know this fear only from the spouse side. A few months after Ellie was born my husband got a cough that he couldn't shake. In a fit of frustration, I told him to go to the ER because I couldn't take his coughing anymore. At the ER they did a chest xray and CT scan and found a mass. I can still remember the utter terror when he told me. I was completely speachless. To make a long story short, he was diagnosed with Hodgkin's lymphoma and underwent four months of chemo. He is fine now and has been remission for 3 years. Still, I couldn't imagine how we would manage as a family without him.

    1. Kim - so glad to hear your husband is ok. And that gives me a lot of hope that even if they did find something else, it would be by chance from checking on my already existing mass, so hopefully also meaning early on where treatments would be effective. Thanks for sharing your story! I will keep everyone posted. It felt good to type it out...been living with it alone for over a month.

  2. Lots of prayers for you all Molly. XOXO