My Tumor - Back to the Story

Tumor. A word you don't want to ever hear.  I started this blog by stating that I had a tumor removed from my spine.

As I've written about this story, I've still not gotten to talking about my diagnosis and how the surgery came to happen

A few days following my first MRI, I received a call from the doctor to say that I had some minor deterioration in my spine at the area of L5-S1.  He didn't feel that it should be causing me so much trouble and referred me to a neurosurgeon.  We began to make calls to a friend in Phoenix who is a doctor and had done his residency in Taos.  He knew of the NM Orthopedics office and made a call to find out who would be the best doctor to see.  He referred us to Dr. Richard Castillo.  Even though he was an ortho-surgeon for the spine,  the word was that he was less likely to move directly to surgery.  The first appointment I could get was in the morning of Monday November 18.

From the time of my car accident to this appointment, I began to deteriorate rapidly.  I could no longer climb the stairs and began to sleep downstairs.  I also could no longer walk on my right leg without using a crutch.  My right calf, ankle and foot was in a continual state of contraction and the pain was increasing.  It's strange that my  leg could be so numb that I didn't  know where it is placed, yet I had intense pain when I put pressure on it.  I continued to work to keep my mind off what was happening.

On the morning of Monday 18th, my wife went to my appointment with me.  The doctors office was huge and full of every kind of patient imaginable.  I was anxious but felt like this would be the visit we needed to get the answers we needed.  As I was called back to the office, my heart began to beat.  What would we learn.  The office staff was great and made us feel really welcome.  As Dr. Castillo came in, it didn't start off so well.  He said, "so what are we doing to you today?"  I had typed out my journey and my symptoms and had provided to him in advance.  As I discussed it and he referred to it, he seemed to become a bit alarmed.

Dr. Castillo began to do some basic neurological exams.  He tested my strength, my reflexes and had me walk on my toes and my heels (at least try to do this).  He then had me roll up my pant legs and close my eyes.  He had me tell him whether the object he was brushing against my skin was sharp or dull.  My wife told me later that I got most of them wrong.

And then it came!  The doctor said, these symptoms are not because of a degenerating disc.  He said, . "Almost everyone 50 years or older has as much degeneration as you have.  This is more serious and is something in your Central Nervous System.  It could be MS, ALS or tumors". My heart sank.  He said we needed to get additional MRIs of the rest of my spine.  We asked if we should just go to the emergency room and he said that they would tell me to see a physician so we should be patient.

As the doctor left the room, I began to weep.  For months, I had felt like something was seriously wrong and now it had been spoken out loud by a medical professional.  Was I facing a life of MS or rapid degeneration as I faced ALS?  It was so overwhelming.  Yet, there was relief that I was not going crazy.  There was really something wrong and we may soon find out what it is!

Is it better to stay in the dark and not know what is wrong?  I've spent a lot of my life with my head in the sand.  I've often avoided the truth as to protect myself from pain.  I've learned in recent years that facing the truth head on can bring freedom.  I no longer want to be oblivious to what is really happening in my life.

And so - I would soon know the full truth.

What Have You Done For the First Time This Week?

How many things have you done for the first time this week?  Perhaps you've been in a rut?  Perhaps you haven't done anything new for a very long time.

This week I have had a week of firsts:

1.  I parked my walker last Saturday and haven't used it since then
2   I put on my pants standing up
3.  I reached a skillet in the back of the cabinet
4.  I drove a car
5.  I went for more than 48 hours without taking a single Oxycontin


I bet by now your thinking, "this guy has lived a sheltered life.  What has he been doing for 50 years? " For many of those years I did numbers 2, 3 and 4 on a regular basis.  However, the first item on this list was a first I didn't expect to ever have to do in my lifetime.  Seven weeks and one day following the removal of a spinal tumor, I parked my walker and began to walk on my own again. So numbers 2, 3 and 4 were firsts again for me.  As for number 5 on the list, I've never taken strong prescription pain killers.  So - for the previous few weeks I'd weaned myself down to just one at night.  This week, I finally used just Advil and found I no longer needed the Oxycontin..

I'm hopeful that you're not having to learn to put your pants on again, but maybe you do?  I hope you can still reach the skillet or drive a car.  But, if you can't, perhaps it's time to begin thinking of what it will take to make that happen.

Physical Therapy (PT)  has been amazing for me and I feel confident that I'm doing things faster than I would have done without an encouraging "coach".  Some other things I did for the first time this week were touch my toes, lunges, squats and walk on a treadmill.  Sure I've done these things before but they are firsts again!  I'm enjoying every one of my firsts - again!

If you have not had a first in a long time, it's time to go for it!  If you have goals to walk again, stretch in a way you've not stretched in a long time or cook your own meal, don't despise your goal!  My first PT goal was to get rid of my walker.  I wanted it to happen faster but 7 weeks was not bad. You can do it too!

I hope and pray that you are healthy!  If so, then you have the ability to choose whatever first you'd like. How about one of these?:

• Try a new food like Sushi, Thai or Indian Curry
• Take a different route to work
• Meet a neighbor
• Go to a movie by yourself
• Put down your phone and be present for your family tonight

Next time someone asks "what have you done for the first time this week?", make sure you have something to share!  Tell me what you've done for the first time this week!  Happy firsts!

Learning to Walk in Faith Again

As this blog was started,  I began with the premise that I would begin to apply the principle of "learning to walk again" to more than just my physical life.  I, however, thought that it would be much further down the road before I would use it as a platform for these ideas.  This month I've committed to a 500 Word per day challenge by writer Jeff Goins.  One of my early discoveries in this process has been that I needed to loosen up my ideas of what I would post to my blog.

Even though I'm not the whole way through the story of discovering my tumor and the miraculous outcome, I find that there is place to post other applications here.

We've been in our new home less than 60 days.  One of our "needs" has been to find a new church since our existing church is 45 minutes away with traffic here in the Albuquerque metro area.  Yesterday we made our third visit to Copper Pointe Church.  We had intended to visit another church but our son has been so drawn to the kids program at Copper Pointe that he was insistent that we try it again.

My wife and I pastored a church in a small town in Arizona for nearly years.  I haven't talked much about that for some time.. We left after I revealed a secret that I'd kept hidden for way too many years.  Our marriage has survived, but often the return to church has been difficult.  Sometimes we felt abandoned by many in the church community.  The process of healing is painful and messy.  The truth be told, the desire to dive back into a new church has often been a weak one.

But this Sunday was different, I barely made it through the first song before I was overwhelmed.  The welcome and the first song were marked by a stance, atmosphere and words that spoke of faith.  "You're the God who saves, You're the hope of all, Reaching out your hand, as your people call"  It was electric, it was powerful and just what I needed to hear at this moment.

This brief experience would change the course of my life this year.  God dropped into my mind at this very moment the thought  " Being in a place of faith makes a difference"   I began to think about what I desire for my family.  I want them to worship and be in a place that embraces faith.  Faith is easily spoken, but living it changes you as you are impacted by the spirit of what is taking place all around you.

I'm shaky in this form of walking.  I've not exercised my faith muscles much in the past few years.  I've not been in places that spoke of faith for some time.  It's time to take some baby steps.  It may feel like I can't move my feet or like I'll lose my balance.  I may need a walker or a crutch for a while.  But of this I am confident, I will learn to walk in faith again.

Writing About Writing

Today in my challenge to write 500 Words a day for the months of January, Jeff Goins challenged us to write about writing.  I've been a bit protective about what I post on this site, but I decided that it was time to relax about that and just get busy with writing.  I know that this blog will morph as my healing continues and my focus changes.

As long as I can remember, I've enjoyed writing.  In elementary school we had to learn cursive and for some reason, it was not as enjoyable for me to write in those years.  Being an over achieving student, I continued to write as I was asked to write.  Then in high school I discovered journaling.  In my early teens I began to struggle with my sexual identity.  Even though I didn't even understand what homosexuality was, I knew I was different than other kids my age.  My journey through the nuances of sexuality will certainly be a topic for future postings.  But, back to writing about writing.  I began to fill journals with my thoughts, my feelings, my experiences and it seemed to give me an outlet.  I had not yet learned to communicate with others about what was going on inside, so this is where I worked it out.

I moved to a new high school for my senior year (oh yeah, another topic I should discuss one day) and I had a class that changed how I viewed writing.  The teacher challenged us to answer specific questions and enter our responses in a weekly journal.  She would ask us questions about how we felt about religious topics, about political issues and abstract beliefs.  One of her critiques for me was that I was good at "regurgitating what I had been taught but I had not yet owned my personal beliefs."  I took great offense to this originally, but in the years that would follow I would realize that she was right.

In college, I was a biology major ( ask me if I've ever done anything with that degree?) and I did a lot of technical documentation and report based writing.  This built my professional writing skills.  However, my journal entries where finally becoming my own thoughts and not just discussions of what others had told me was right or true.  I was developing my own thoughts.  Again, writing was helping me to work it out.

In the years that followed college, I would experience a crisis of faith.  As I worked it out, I was now questioning almost everything that I had been taught in my first 21 years.  The next four years would be the most tumultuous, promiscious years of my life.  My writing became more and more intense.  In the early years of my career as a Flight Attendant I would have seveeral days off in a row.  I would lay outside enjoying the warm summer days and write for hours on end.  Many of these journals still follow me from city to city after 23 years.  Have a re-read them.  You bet I have!  Am I glad I'm not still in the same place.  You know it!  Do I still have some of the same issues that I did a quarter century ago?  You know I do!

There is much more I could say but I am sure by now you've heard enough for today.  I'll finish by jumping to writing today. I work a full time job in Learning & Development for a large accounting firm.  I write most every day for work, but writing for pleasure and to tell my story still excites me.  I'm learning that we are more alike than we are different.  I write to connect with others to share the journey.  And in some overarching

What? I Don't Feel Numb?

Today was the first day I can remember waking up in over 6 months and thinking " my feet don't feel numb!"  I'm not sure if this is because I drank too much last night.  Or was it because I'm taking less medication?  Or - is it just the day that my symptoms became less noticeable?

It's exciting to think that just over 6 weeks ago, I had surgery.  At that time, I couldn't feel my leg or even know where I was placing my right foot.  Right after surgery I began to get my surface sensation back but the numbness in my foot and legs still happened at night.  For some reason last night - I didn't seem to have as much numbness.


So weird - that just as I write this now, my feet are beginning to feel numb again.  However, I only had my Baclofen today and it was nearly 12 hours ago that I took it.  I'm wrapping up a long day and I need to take my medicine and head to bed.

I'm so grateful to be getting sensation back.  Until you lose sensation in your limbs, you don't realize how good it feels to have your feet on the ground.  You don't know how great it is to put your hand on your leg and feel the slightest of sensations from touch.  You don't know how good it feels rub your feet together and have full sensation of them moving against one another  I really had rarely thought of these things until I lost them.

Ever had something you didn't miss until it was gone?  I'd love to hear what it was and how you felt about it.

Doctors, MRIs and Airbags

Note:  This post was actually written on January 4th of 2014 but I'm just getting it posted today:

Today I began a new challenge, to write 500 or more words a day.  Most likely, I'll not post something on the blog every day.  However, as I keep up this challenge, I should have much more to post in the days ahead.  Perhaps you don't care much about that but that was just a side note to the story that I"m telling here on the blog.

After seeing the doctor that dismissed my symptoms, I began to ask for references for other doctors.  I needed to find someone who would take me seriously and try to find out what was going on.  Our small group leaders from church had a doctor that they recommended.  They said  he was the kind of doctor who would not give up until he figured it out.  I felt like I needed this kind of a doctor and got in with him fairly quickly.

When I saw this doctor, I was limping a great deal and my pain was increasing.  Even things like taking a shower were getting difficult for me.  I'd have such a spasm or tightness in my  right side and my leg that I could barely stand in the shower.  Again, because it seemed to be my worst time when exposed to heat or steam I kept thinking this must be something like MS.  When I closed my eyes I was losing my balance and I dreaded having to take showers.  It was getting harder and harder to care for myself.  I couldn't put on a pair of pants without leaning against the wall to keep my balance.  I was getting more and more scared.

When I saw Dr. Kumar, he reviewed my blood work again.  He checked my reflexes and my strength in each leg.  He checked my stomach and abdomen as I kept thinking that my right side was bulging.  Did I have a tumor?   Like my first doctor he said that he could not palpate anything like a tumor and he checked for pain in my back and sciatic area.  I didn't have much pain but rather excessive numbness.  When he laid me down on the table, I did have a sharp pain in my middle back. ( I now know I should have been paying more attention to that.....)

Dr. Kumar ordered an MRI that ended up being scheduled the second week in November.  I thought it was an MRI of my whole spine but it ended up being only of my lumbar area as the focus was on my lower back.

About 3 hours after my MRI, I was preparing to leave to pick up my son and we would then sign the lease on a new single story home.  I could not handle the stairs anymore.  My wife, Caryl, was scared she would come home and find me laying at the bottom of the stairs.  Our landlord tried to give us a hard time about breaking our lease, but in the end the investors agreed to allow us to do so.  We had to pay through December and lose our deposit but we would be able to move to a house that was safe for me.

But - I would not make it to pick up my son or sign the lease that day.  As I was leaving our neighborhood that afternoon at about 4:30 PM, I rounded a turn and was headed directly into the setting sun.  I was blinded for a moment and did not see the truck that was coming right toward me.  I was only going about 15-20 MPG but our left front corners collided.  My airbag deployed and I was dazed with "smoke" filling the car from the airbag.  My door was hard to open but I pushed my way out,  I would then spend the next few hours working with insurance, tow trucks, police, ambulance personnel, etc.

Little did I know how this accident would change my life.  Perhaps it would even save my life.  I would soon see many more doctors. I would have many more MRIs.  Things would get worse before they would get better. I still did not know what my diagnosis would be.  More to come.