Awake and Alive

Around four years ago my youngest son, Jesse, recommended the band Skillet to me.  It took me all these years to finally check them out....but now am so glad I did.  This song, Awake and Alive, really spoke to me.  It's been almost a week since hubby and I officially became Catholic.  If I had to describe in just one sentence how taking Eucharist makes me feel, it would be 'Awake and Alive'.  We've been on this journey to becoming Catholic for over 10 years now.  It's been such a struggle to overcome the discrimination that many Christians feel toward the Catholic church (we ARE Christians, too).  Father Vic said it best, 'It's difficult to look at something that is so different from what you've always thought it to be'.  I finally learned to open up my heart and mind and really learn what the Catholic church is about - and I fell in love with God all over again.  The night of December 22, 2014 was the closest to God that I have ever felt.  And I will NEVER be the same again.

I know what I believe inside
I'm Awake and I'm Alive

My Health Care Posse

Life has been quite eventful since my Cleveland Clinic appointment.  I've spent my days on the phone (and via email) trying to get pre-authorization for the chest, abdomen and pelvis CT scans that Dr. S at Cleveland Clinic ordered on 4/29 - tests that are to be performed at my local hospital so they can be compared to my previous scans.  These tests are to see if there has been any spread of the Ocular Melanoma.  In my opinion, considering I have kidney cancer, it will be anyone's guess as to which cancer any new findings belong to.  It seems the liver is the biggest concern since that is generally where OM metastases go.  But, kidney cancer also finds the liver to be a pleasing environment.  A bridge we will cross if we come to it.

Having medical coverage - and the art of getting pre-authorization - is new to me.  We haven't had medical insurance since 1998.  I understand why insurance companies require pre-authorization for certain tests  - you would think that Cleveland Clinic and their doctors would be intimately familiar with the process.  It has taken me 12 days to get Cleveland Clinic to submit the required justification to our insurance company.  At first Cleveland Clinic said they couldn't release any of my medical information to the insurance company without my first signing a release form.  So they emailed it to me and I printed it out, signed it and mailed it off.  Then the day they received my release form they informed me that it is up to the hospital doing the tests to seek this pre-authorization.  After my replying with a strongly worded email to Dr. S's assistant - they finally submitted the necessary information to our insurance and we got authorization.

I got my blood work (a comprehensive metabolic panel) on Friday morning (5/9) and will have my CT scans on Wednesday afternoon (5/14).  The results should be ready to pick up on Thursday - just in time to take to Dr. B on Friday.  The only part of the scans I'm not looking forward to is the expected ingestion of Banana Barium.  They said I could stir in some chocolate or strawberry flavored Nestle Quik powder - but that just seems so wrong.

I've also been scurrying around like a squirrel getting 6.5 years worth of CT scan images on disc and their associated printed reports to take to a local oncologist.  Dr. T reviewed my stack of records and has accepted me as her patient.  My first appointment with her is on 5/20. 

No health care posse is complete without a primary care physician.  The insurance company assigned us a PCP but he isn't accepting new patients.  And then we waited patiently for our copy of the provider book - which ended up being outdated as most of the PCP's in our area are not accepting new patients currently.  Just when I thought all hope was lost - I found one.  Our new patient appointments with Dr. Sh is on 5/22.

After a very long week and a half I have finally shed some of my stress.  Now that I have all my little ducks in a row, it is time to get focused on work and achieving the goals necessary to go into surgery next month.  With cancer it is so easy to feel out-of-control - so taking control of that which is within my reach helps me to better cope.  I'm not sure anything can fully prepare me for having one of my eyes removed.  But, every little stressor that I can tackle pre-surgery will make next month that much easier on me.

Cleveland Clinic Part Deux

The last time I was at Cleveland Clinic was on November 20th, 2007 - for a consult at Glickman Urological Institute about the mass in my right kidney.  The surgeon scheduled surgery but with no $$ or insurance we couldn't pay our portion up front ($24,000) and the surgery was cancelled.  This experience has always left a bad taste in my mouth.

On April 9th, Dr. B said I would have to go to Cleveland Clinic for a consult.  On April 10th, Dr. G did the referral.  And I bitched about it every step of the way.  They didn't help me the first time I needed them - why on earth would I let them help me now?  And it's in Cleveland - a two hour drive away in a very big city - and I'm a small town girl who gets very nervous in all that hustle and bustle.

The only upside is that our insurance helps with transportation to appointments in excess of 30 miles from home.  Ron was supposed to travel with me - but since he is fresh out of the Cardiac Care Unit he needed to sit this one out.  So I took my Dad with me. 

My appointment was scheduled for 8am.  The Yellow Cab driver called last night to say he would pick us up at 6am.  Apparently his alarm didn't go off, he instead woke up at 6am and didn't pick us up until 7am.  Fortunately my Dad is a good sport - he listened to me alternate between bitching about 'where is our driver' and 'I don't want to go to Cleveland' to 'We are going to be nice when he gets here so we get to Cleveland in one piece'.

The entire drive was fraught with the usual morning rush hour, construction and rainy day accidents.  The driver was older, stressed and lost out on two other trips he was supposed to work because of his tardiness.  He sighed a lot - the car reeked of cigarette smoke and he likely needed his fix as we creeped our way up I-77.  We didn't actually arrive at Cleveland Clinic until 9:30am. 

Fortunately, Dr. S was still willing to see me despite my being an hour and a half late for my appointment.  First up was a meeting with his nurse to get a history and do some basic vision testing.  She gave me a lecture about letting my kidney cancer go untreated and waiting for over five years to have my eye looked at.  And, of course, she threw in a little 'Melanoma is nothing to mess around with.  Don't you realize you could die from this?'.  My snappy retort about being previously uninsured and Cleveland Clinic having turned me away the first time was enough to shut her up.

Next up was a meeting with Dr. S's Fellow - a nice young man who about crapped himself when he saw my tumor.  Like a kid who just discovered a purple unicorn under the oak tree out back, he ran off to tell Dr. S - who was equally excited and brought in a visiting professor from Abu Dhabi to take a little looky-see.  While I appreciated their enthusiasm and marvel at the mushroom shaped cancerous mass that destroyed my retina - it made me feel more like a freak show exhibition.  After the oohing and ahhing calmed down, more tests were ordered - an ultrasound and fluorescein angiography. 

The ultrasound of my eye didn't hurt - they put in numbing drops first.  It was more of a pressure issue - and I find it very freaky to have anything touching my eyeball.  This test was supposed to take 15 minutes but instead took almost an hour because they were having a difficult time determining where the base of the tumor was arising from.  The fluorescein angiography was pretty cool - they take a lot of pictures of the eye beforehand and then a rapid sequence of images after the dye is injected into your hand (or arm).  The dye was very painful at first so they had to switch to a new vein (it isn't supposed to hurt).  And as a result, my urine was fluorescent yellow for a day.

My biggest gripe is that I wasn't able to have Dad back with me for the final consult.  He had been reading in the waiting room and I thought we would be getting lunch after my tests with the consult sometime in the afternoon.  Instead, I was immediately put into an exam room after my testing.  The consult was over before I knew it.  My tumor is too large for radiation plaque therapy (Brachytherapy).  The only treatment offered was enucleation (removal of the eye). 

While Dr. S is one of the foremost authorities on this type of cancer and potential treatments - he was quite arrogant with me.  My local doctors sent me to him in order to find out the type of cancer and if I might benefit from any of the treatments he offers.  I explained to Dr. S that my husband had just had a heart attack and was scheduled for 12 weeks of Cardiac Rehab - and that we lived over two hours away - and that I wanted these records sent to Dr. B so she could perform the surgery.  His response was that Dr. B wouldn't know how to do this (he doesn't even know her) and that he offers quality and had scheduled my surgery for May 16th.  Arrogant - pompous - and assuming.  Big turn-offs for a pro-active patient like myself.  I eventually just had to smile, nod my head and act like I was in complete agreement just to get out of there. 

The bottomline was that Dr. S wasn't listening to me - he didn't give a damn about what I needed or wanted from this situation.  His assistant didn't even inform me that this was the consultation - and they didn't allow me the opportunity to bring Dad back to sit in while the doctor discussed the findings and offered his opinion.

The highpoint of the day was lunch with Dad in the cafeteria.  There was such a variety for a foodie like me - but my spirit felt so broken that all I wanted to do was load up that tray with a couple dozen pudding parfaits.  But I was a good girl - I made a salad, had some mashed potatoes and one parfait.  And so we sat over our lunch and I explained to Dad all that had happened.  And then I just fell quiet.  I think Dad thought I was upset about losing my eye.  All I could think about was that it is melanoma - and wondering if I am going to die from this.

And then we called our driver and made our journey back home.  It was a long ride.  I will never go to Cleveland Clinic again.  Fool me once, shame on you.  Fool me twice, shame on me.  There will be no 'third time charm'.

When It Rains, It Pours

When it rains, it pours.  Or in this case - a deluge.  My husband had a heart attack - at age 40.  His Right Coronary Artery was 100% blocked so he underwent a heart cath where they were able to open it up and insert a stent.  This was Friday.  Thankfully he is home now - sleeping in his own bed - with no apparent heart damage, five prescription medications and some dietary restrictions (cholesterol, fat and salt). 

Friday was one of the scariest days of my life.  Scarier than finding out you have cancer.  Twice. 

Ron and I met on April 9, 1993 in a little bar in my hometown.  We got married on May 7, 1993.  Like all married couples we've had our ups and downs - but he is more than just my husband.  He is my best friend.  I tell him things that I would never say to anyone else.  He gets me in a way that no one else ever could.  He knows when something is wrong - even before I say a word.  He knows when I'm sad and trying to hide my tears.  Even with all my faults - he loves me unconditionally.  I cannot imagine my life without him.  He quite literally has made me a better person. 

He had some warning signs.  After mowing the front lawn on Monday he began having some chest discomfort.  He took some ibuprofen and wrote it off as just being muscular.  On Wednesday he tried to go back out and finish mowing only to have the pain return.  The pain was in his chest and radiating down his arms and into his jaw and back.  It settled down as he sat and rested.  Then on Friday morning he decided to try exercising for a few minutes on our recumbent bike.  There was no denying this wasn't muscular pain - he had pain similar to Wednesday but this time began experiencing lightheadedness.  He got dressed and I drove him to the hospital.

The initial triage went smoothly.  His EKG looked good.  Some blood work and a chest x-ray were ordered and then we were moved to a little cubicle at the back of the emergency department.  Ron was given some aspirin and a bit of nitro paste was taped to his chest.  And then we sat back and waited.  His pain was minimal but the lightheadedness just wouldn't ease up.  We were sitting there quietly - talking, smiling and wondering what would become of all this.  Then the doctor showed up and examined Ron.  He left briefly to go check Ron's blood work only to come back quickly and say the words heart attack and blockage followed by a barrage of medical personnel and equipment.  It all happened so fast!  Before I could kiss my husband goodbye, he was being wheeled off to the cath lab.

And then I sat in the CCU family waiting area.  More like paced, really.  I called my parents and felt better knowing they were on their way.  I called his Mom but ended up having to leave a voicemail.  And then a chaplain came and sat with me - Sister K.  It felt like hours had passed before a nurse came searching for me.  I had so many questions - but she wasn't allowed to answer any of them.  I was imagining the worst scenarios at this point.  A doctor showed me a video of the procedure and explained it to me - but the best part was when they said I could walk around the glass and comfort my husband.  They had done the procedure in the ED Cath Lab instead of taking him up to perform it on the Cardiac floor. 

My husband looked so helpless laying there on that table - tears streaming down the sides of his face.  The procedure had happened so quickly that he wasn't sedated - he had been wide awake through the entire thing.  He was in pain, scared - yet so glad to see me.  And so I just stood there by his side, stroking his hair and forehead and giving him some measure of reassurance.

I prayed so hard during that whole process - and God answered my prayers.  My husband is whole again - and recovering remarkably well.  And for that I am thankful.  I have many dark, rainy days ahead of me and I really need him by my side.

Second Opinion

I saw the retinal specialist today - Dr. G.  Lots more tests.  Double the pupil dilation drops.  I swear I didn't see straight for at least two hours!  Very pleased with his thoroughness though.  Dr. G. concurred with Dr. B. that I have a large nonpigmented choroidal mass in my left eye with retinal detachment.   

Because I have had kidney cancer for so many years - untreated - Dr. G. is worried that this eye tumor could possibly be a metastasis - or it could be straight up melanoma.  He is referring me to an ophthalmology oncologist at Cleveland Clinic - Dr. S. at the Cole Eye Institute.  These big boys have bigger toys that can tell us with about 97% certainty what is growing in my left eye.

I have never had so much pain with pupil dilation as I had today.  I am chocking it up to all the time spent with very bright lights being shined into my eyes during the very long photo sessions.  Fortunately a couple ibuprofen and a two hour nap eased the pain - just in time to go to Alliance for my routine mammogram.  At this point I feel I might be pushing the envelope with every procedure that is done.  There is no reason to think there will be anything other than normal mammogram results - but my luck hasn't exactly been running the greatest lately either. 

Here are some pics of my large, vascular tumor:

Four different aspects of the choroidal mass, left eye
Far left = optic nerve (back); Far right = iris (front)

Self Misdiagnosis

Today was a VERY bad day.  I have a tumor in my left eye, will likely lose my eye and we had to make the difficult decision to put our dog, Annie, to sleep.  I can't imagine another day being worse than this one feels.

In January 2009 I went to an eye doctor - I had been experiencing some drastic vision changes in my left eye and figured I needed a new eyeglasses prescription.  He saw a freckle (nevus) in my left eye but said it was nothing to worry about.  He said if I was concerned I could follow-up with a retinal specialist.  We were unemployed and had no insurance - so I just let it go.

By November 2009 I had begun to literally lose the vision in that eye.  By 2011 I had lost all of my central vision with only a sliver of peripheral vision in my left eye.  Over the years I have looked at various websites where they show image examples of various eye conditions that affect vision and can lead to vision loss.  As a result, I assumed I just had early onset macular degeneration.  Boy was I wrong!!

Today I met with my parents' eye doctor - Dr. B.  After numerous tests she concluded that I most likely have Choroidal Melanoma.  She has referred me to a retinal specialist who will see me in the morning.  She has also ordered CT scans of my Head and Orbits to check for extension.  These will be done at Aultman on Friday evening.

I already have one cancer - renal cell carcinoma.  The last thing I need is another one.