It wasn’t until about 3 weeks ago…

when I picked up the refills for my medication that my past year of 2011 came to the surface and stopped me in my tracks, literally.   As I walked away from the pharmacy the sun was shining in my eyes and all external noise around me went quiet as I could hear my heartbeat and footsteps clearly.  When I sat down in the car I became overwhelmed as I thought about being seizure free for 1 year, 1 month and 15 days, going through radiation therapy,  getting my driver’s license back and traveling across the country in the summer which allowed me to see my father before he passed away last September.

It was New Year’s Eve,  December 31st, 2010 and I was bringing in the new year with a few friends and jokingly explained to everyone the reasons why they should NOT call 911 if I were to have a seizure, ending my statements with “Just let me ride it out”.  They all looked at me with raised eyebrows of crazy concern, but agreed.  I woke up that next morning at their house around 8:30 am, took a shower and went into the living room to watch some college football bowl games while they slept.  As I was changing the channels all I remembered was the remote control flipping right side up, then sideways, me trying to yell out only to wake up 20 minutes later with a cold towel on my forehead and everyone standing over me.  Honestly, I never thought it would happen, but as I was lying there it was confirmed that my instructions tormented them all as they nervously waited for me to wake up.

The next day I called my neurologist, informed him about what happened and on January 10, 2011 I had my first consultation with Dr. Bouzaglou, Chief Oncologist at the St. Vincent’s Cancer Treatment Center to discuss my radiation therapy.  After we discussed my medical history, I got my initial order of 25  3D radiation treatments and was fitted for my mask.  I began therapy that next day at 9:00 am and it would be the start of me taking more medication to prevent seizures while undergoing the radiation, nauseating sickness, extreme fatigue and quietly making new friends.

My first day of therapy felt like the first day of school as I checked in with the receptionist and waited nervously for my name to be called.  I sat facing the rooms where the radiation treatments took place just watching the red light go on, stay on for a few minutes and then turn off.  After a few people came and went,  my technician Paula came around the corner and called my name.  She saw and knew I was nervous watching me dry my hands on my jeans, but put me at ease with a smile and soft handshake.  She then asked me my name and birthday for identification purposes, which was a process I would repeat for the next 32 days.

As the days passed, so did the treatments, yet the faces in the waiting room became more familiar.  Everyday we would all acknowledge one another with a nod of the head, smile or simple wave to say “Good Morning”.  I would even notice when certain people weren’t there and wonder, but it was when I walked into “The Room” to receive my treatments that I would see the apparatuses or masks those faces in the waiting room would have to wear during their radiation or chemotherapy sessions for the different types of cancers they were enduring that brought it full circle for me.  It was then I couldn’t help but realize how blessed I was to have survived that initial seizure, surgery and receiving the care I was knowing that my new friends were suffering from far worse ailments.

I would see the doctor weekly for an update on how my 3D therapy sessions were progressing.  The 3D process for me was lying under a huge machine that rotated around my head 5 different times delivering radiation that would focus on certain pinpointed areas selected to kill off any residue scar tissue and/or tumor cells.  I was just 3 treatments shy of completing my 25 when Dr. Bouzaglou sat me down and told me I would need another 7 in addition to the 25, but these 7 would be IMRT treatments.  The IMRT (Intensity Modulated Radiation Therapy) therapy is a different treatment process where the machine does not move and the radiation is delivered in a more intense manner solely concentrating on the area where the tumor was.

The news of the additional 7 treatments and the IMRT process was not welcomed, but in staying positive and the thoughts of those going through much more than I, helped me get through it.  On Thursday March 3, 2011 it was all over and outside of losing my father, it was a very emotional day as I was handed my certificate of completion, exchanged hugs and handshakes and said goodbye to my technicians and Dr. Bouzaglou who also became my friends.  I got to bring my mask home, which now sits in my living room on top of a bookcase as a reminder that – I am a Survivor.

I started writing this entry…

at the beginning of October and could not finish it, so I just sat back and saved the draft.  I came back 3 weeks and 5 weeks later only to struggle and set the entry aside two more times.  Now that the services are over, most of the lingering paperwork and phone calls have been completed, I’ve been able to get it together and finish writing the following words despite the Loss and Void in my Heart and Life.

I wrote “to be continued” at the end of my last blog entry in which my next was going to and still will retrace my six long weeks of radiation treatments and how that experience impacted my life on many different levels.  Yet, as we all know “Life Just Happens”.  In “You Just Never Know – Part 1”  I wrote about traveling across the country with the music group from Havana, Cuba.  And how although it was fun, exciting and a check off of my Bucket List of things to do, the most important part of the trip for me was visiting my father in Indiana as he had been ill and recovering from pneumonia. 

It was really good to see my father while on tour in July because I had not seen him since May 2010 when he came out to California for my surgery.  We visited for a few hours, shopped for groceries at Wal-Mart and went by one of his favorite spots for lunch – Popeye’s Chicken.  When it was time for me to leave it was very difficult, but I was somewhat at peace because he was getting around, joking and his normal grumpy self which was a good sign that he was definitely on the rebound.  As we stood up to hug one another we both started to cry.  He told me how glad he was that I had taken time out to visit him and how proud he was of me for taking care of myself while recovering.  That moment really meant alot to me as I had never seen my father show so much emotion before.  We kept in touch while I was on the road and as usual when I returned home.  We’d normally talk 1 – 2 times a week with his first words always asking me “Hey, how are you getting along?”

He called me on my birthday which was September 7th and I could hear the excitement in his voice as he told me his doctor had finally taken him off his respirator and how he was feeling  much better which was very comforting.  I was on my way home that Sunday after my birthday and missed a couple of calls while on the road, but had gotten one message from my aunt to call her.  When I got home, I had set my bags down and was going to make the call, but was stopped by my mother who quietly told me my father had died earlier that day.   As I went to sit down on my bed to catch my breath, I became overwhelmed with the thought of when I was saying goodbye to my father in July.  It was then, when we hugged and I looked at my father and jokingly said “yo pops, you got chicken crumbs on my shirt” I knew in my heart that would be the last time I would see him alive.  I began to cry as I’m doing now, but was just so glad that I got to see him.  My father passed away on September 11, 2011, four days after my birthday and 2 months to the day I last saw him.

That next weekend a service was held for him in his town of South Bend, Indiana.  He was cremated the following week and on September 24th we flew together back out to California where we later had another service for him and he was interned.  On the flight back home we looked out the window and I talked to him about the roads I had traveled while out on tour and the road that meant the most to me.  That road was highway 80 heading east out of Chicago through Gary, Indiana and into South Bend when I was on my way coming to visit You. 

I miss my father very much.  His voice, his jokes, his laughter and that grumpiness we all grew to Love.  As I can’t help but think about my surgery everyday, I also think about my father now and keep him close to my heart as I found his US Marine dog tag and wear it around my neck with my medical ID tag .  Love You Pops…

You Just Never Know – Part 2…

What it feels like to have more seizures when you’re told you shouldn’t, to ride in the back of a cold ambulance until you’re forced to, or completely lose your day-to-day independence and have to rely on others when you have no choice or voice in the matter.  Unfortunately – I do. 

After crashing my car last September and awaking to the paramedics checking my vitals, one of them asked “What’s with the scar on your head?”  When I answered “I had brain surgery 4 months earlier” they both looked at one another, called ahead to UCLA Ronald Reagan hospital in Westwood and closed the doors to the ambulance.  The last thing I remember asking was “Can you call?”  When I woke up again, I was being wheeled into the emergency room with a team of doctor’s surrounding me asking another round of questions while the nurse was trying to stabilize my symptoms. Shortly after that, my mother arrived with that same look of helplessness in her eyes right before I had surgery.

The hospital held me over for the next 2 days for observation which was ok and quite comfortable in spite of my back and neck pain as I had my own private room with a flat screen television with DirecTv, etc…  Nevertheless,  everything started heading downhill when the doctors came around the next day and  informed me they were obligated to inform the DMV of the accident and that I had to surrender my driver’s license.  The requirements for both the doctors and DMV were that I had to be seizure free for 6 months before they would even consider reinstating my driving privileges. 

At the time, that sounded reasonable as I didn’t want to drive right away, but as the days and weeks passed by I began to get a little, well very impatient always having to rely on my mother and others to drive me around.  I can now admit that I was not the easiest person to live with as depression was setting in and my pride was bruised as the self-sufficient and independent person my mother had raised me to be was now temporarily sidelined.  It was without a doubt very confusing and a struggle to deal with at the time. 

On November 10, 2010 I had another seizure in my sleep and the 6 month count started all over again.  On December 2nd while watching television, I had another seizure and woke up to the paramedics wheeling me into the ambulance heading back to the hospital after my mother called 911.  This seizure was very disturbing for her as it was the first time she had ever witnessed me seizing and frightened her to the point that a friend of mine had to drive her to the  hospital.  Then on December 12th, I humbled myself and reluctantly gave in and ordered my medical ID tags which stated all of my pertinent information.  Name, date of birth, surgery date, emergency telephone numbers, etc… 

Things were going well for the rest of the month as I was looking forward to the new year, getting adjusted to my new levels of medication and once again quietly waiting for 6 month to pass.  On January 1, 2011 while visiting with some friends, I had yet another seizure and woke up to everyone standing over me with a wet towel on my forehead. They didn’t call 911 this time as I instructed them not to and was brought home later to rest.  

I called my neurologist the next day as I had done with every other episode to schedule an appointment.  When I saw Dr. Lee that week, the order was already signed for me to undergo Radiation Treatments and my consultation with Dr. Bouzaglou, the Chief Oncologist at St. Vincent Cancer Treatment Center was set-up for January 10, 2011 at 10:00 am.  Although my tumor was benign, the images, people and pain I witnessed over the next 8 weeks while going for my daily treatments would not only further depress me, but would also eventually help me turn that corner encouraging me to come out of My Darkness by Sparking a Light in My Soul that would forever change My Outlook on Life and towards People.

to be continued…

You Just Never Know – Part 1…

How your personal situation can turn into a blessing when you’re surrounded by people that care for and support you.  In my last blog entry I talked about coming home, my car accident and will continue that part of my journey in Part 2 of “You Just Never Know”.

For now, I want to share an Incredible, Unbelievable and “I’m glad to be Alive” experience that I’ve had this summer.  A friend and one of my biggest supporters since my surgery, Peggy Jo Oliva owns and operates Lucumi Productions which books Latin Jazz and Salsa musical groups.  She was working on a  summer tour for a Grammy Award nominated group from Havana, Cuba called “Maraca”.  I was constantly bugging her to let me help and she finally gave in.  We started working together in March anticipating the group arriving from Havana, Cuba on June 13th.

The months slowly passed as she booked more dates across the country while we planned the air and land logistics of the tour.  Then, before we knew it, it was June 13th and we were at Los Angeles International airport picking up the 13 member band and their manager.  This was the start of Maraca’s U.S. Summer Tour and an adventure that I will never forget and can check off on my Bucket List (Things to do before I Die) as something I had always wanted to do – Travel across our Beautiful country by driving it.

We left Los Angeles early the next morning and headed north to Napa Valley and San Francisco, Oregon, Washington.  Leaving Washington we drove through Idaho, Montana, Wyoming into Utah and Colorado where we crossed the Colorado River and visited 4 Points National Park where Colorado, New Mexico, Arizona and Utah all meet at 1 common geographical point on the map.  Keep in mind, the group was performing at various locations along the way as well as singing to the Mp3 R&B, Jazz and other tunes we had in the vans which was a lot of fun. We continued driving east through Kansas, Nebraska, Iowa, Illinois, Wisconsin, Michigan, Indiana and Ohio where we crossed the Mighty Mississippi River which was an amazing sight to see.  We spent the 4th of July in Harrisburg, Pennsylvania which was a little emotional as I looked back to a year ago visualizing myself still laid up in the bed recuperating while at the same time realizing this is where our country started, it was pretty awesome feeling.

After leaving Harrisburg we were on the road again and headed back to the Mid-West.  Chicago, Illinois was our destination which was great because I have alot of family there and my father only lived 90 minutes away in South Bend, Indiana.  It was good to see my father and spend time with him as he had been battling pneumonia for the past few weeks.  I left the tour on July 13th which was exactly 1 month since we left Los Angeles because I had some doctor’s appointments I could not re-schedule.  Crazy how brain surgery can get in the way of having fun – LOL…  Nevertheless, I had an amazing time and when I looked at the odometer before leaving, we had driven some 8,781.9 miles in a month.

The group ventured on to other locations in South Dakota, New York and Washington D.C. to perform.  All that to say, I just want to Thank Peggy, Celine Chauveau (Maraca’s Manger) and Orlando Valle – The leader of the group “Maraca” as well as all of the band members for an unforgettable experience.

 

 

My next 3 weeks at home…

When I was discharged from the hospital, I was given different types of medications to control any post surgery complications such as the swelling of my brain, infections and pain.  Although the medications were allowing me to rest for 15 – 20 hours a day, it was still difficult to find comfort as the pain from my head was excruciatingly loud, constant and had me moaning for relief at night.

Although the restless nights continued and still do to this day, the pounding from the pain pretty much leveled out 2.5 – 3 weeks and 39 vicodin pills later, which was 1 short of the 40 pills prescribed to me – LOL.  It was okay, because June 3rd was fast approaching and that was the day I was getting my staples removed.  Remember those, the 1.5 inch long stainless steel staples that went through my scalp into my cranium to help close the incision.

Finally.  Thursday, June 3rd arrived and I was happy, but a little nervous because I didn’t know how they were going to remove the staples – all 54 of them.  I was really hoping the doctor was going to spray a local anesthesia to numb my head while he pulled them out – NOT!!!  Dr. Rahman walked into the room and we went through some routine post-op tests.  When I asked him about numbing my head?  His nonchalant response was “Oh no, that’ll take too long. Don’t worry about it, you’ll only feel a little pinch.”  He left the room and returned with a pair of pliers with tip bent at a 45 degree angle.  I immediately broke out into a cold sweat and that little pinch he mentioned felt like birds pecking me on my head.  I just sat there wincing, sweating and told him half way through the process – “It’s time to take a break.”  As he was getting close to the end, he started counting down 6, 5, 4, 3, 2, 1 and then it was over.

He cleaned my head up and then we discussed issues like my anti-seizure medication, driving, strenuous activities, etc…  I was told no heavy lifting for a couple of months, was not given any driving restrictions and then handed a long list of do’s and don’ts.  He also explained, that although the tumor was the size of a tangerine and a grade 2, the removal went well as they got the majority of it and that I should be free of any seizures.  With that being said, he wanted me to decrease my anti-seizure medications over the next couple of months and stop taking all of the meds by August 1st.

I was excited about my prognosis, the upcoming summer and looking forward to finally being done with taking all of those pills.  Everything was going well as I had not had a seizure since my surgery and it was the middle of September.  I was starting to feel a little more comfortable with myself, but still felt like I was walking in that surreal altered state amazed at what I had just gone through and how well I thought I was doing.

Then, on September 27, 2010 at 8:30 p.m. my world went black again.  I was driving home, blacked out from another seizure and crashed my car into some trees.  When I woke up, I was in the back of an ambulance asking the paramedics “Who are you guys?” as the CHP officer was handing me a breathalyzer.  The journey that I thought was going well, just got turned upside down and the emotional and mental rollercoaster I was about to go on was something I would not wish upon my worst enemy.

Below are pictures shortly after my surgery with the staples still in my head.

My 5 days in the hospital…

As my 1 year anniversary came and went quietly, I was definitely reminded of the entire process of getting my Mind, Body & Soul prepared to have brain surgery which at the time was an incredibly surreal feeling.  Nevertheless, I checked into the hospital a day early to get my pre-op MRI done which pinpointed the exact location of the tumor and to get prepped for surgery with blood tests and IV drips, etc…

After I was admitted and got settled, some family and friends came by to visit and share words of comfort and support which I sincerely appreciated.  Yet, in my mind I was completely at Peace with what was about to happen because at that point, it was “In God’s Hands”.  Dr. Dye had explained the surgery procedure and possible side effects as the tumor was located in the left front side of my brain.  The process was to cut my scalp from my left ear to the top of my head and then down to the center of my forehead making a semi-circle, peel the scalp back, saw my cranium open and place it in a sterile environment.  Once my brain was exposed they would remove the tumor then secure my cranium with 4 titanium plates and screws for the re-fusing process which would take up to 1 year.  Then use 1.5 inch long stainless steel staples to close the incision on my head so it would heal.  Just for the record, No I don’t set off the security machines at the airport – LOL…

Later that night around 9:30 p.m. as I was saying goodnight to my parents, I was informed that I would be the first patient up for surgery that next morning at 7 a.m.  Needless to say, I didn’t sleep at all that night and watched the sun come up to brighten the overcast day.  My mother walked through the door around 6 a.m. with a look of Love, Anxiety and Helplessness on her face as she smiled and asked me how I was doing?   Around 7 a.m. I was told my surgery had been pushed back to 1 p.m.  It was a slight relief, but at that point I just wanted to get it over with.  Then, at 11 a.m. the operating room nurse came in, told me it was time to go and got the process started by asking me my name and birthdate.  I looked at my mother and my aunt Gracie, told them I loved them and was wheeled out of the room.  At that moment, all I could think about was the wait I endured waiting for my friend Elaine to come out of surgery and what my family was about to go through waiting for me.

After we got downstairs, the nurse put the gurney against the wall right outside the operating room doors where I waited for almost two hours while the room was being sterilized.  At some point I fell asleep and was awaken when they started rolling me into the operating room.  It was 12:52 p.m., the room was cold and it all became as real as real could get with the team of doctors conversing,  me asking questions about the instruments they were going to use and the anesthesiologist interrupting everyone so as to ask me my name and birthdate.  I was just about to ask my surgeon to take a picture of the tumor, but before I could get it out, I was waking up in the Intensive Care Unit 6.5 hours later.

When I woke up, my mother was standing on my right side along with two of my other friends.  I think I cracked a couple of jokes and fell asleep again.  As everyone was leaving we all smiled, but I could sense another sleepless night was about to begin.  This time it was because the anesthesia was wearing off and OH MY GOODNESS!!!  The pain coming from my head was beyond indescribable, unbelievably intense and so enormous that morphine injections and vicodin did nothing to ease my condition.  After the surgeons made their rounds and checked on me the next morning, I was moved to my room where I spent the next three days enduring the pain while taking phone calls from friends, family and those who came by to see me.

I finally came home on May 16th which I welcomed as I was leaving behind the beeping IV machines, having my vitals checked every 4 hours, no sleep, blood draws every day and the horrible hospital food.  When I got home, I looked at my swollen head in the mirror, patiently took my first shower since surgery and laid down to rest.  While laying down in my own bed it was so quiet and comfortable, but it was also at that moment I realized, the easy part was over and the hard part was just about to begin – My Journey after Brain Surgery.

Below are two pictures of my MRI scans.  The picture on the left is pre-op with the tumor and taken on 5/12/10 and the other picture on the right is post-op taken on 9/7/10 where I’m tumor free.  The scans are reversed as the MRI machine scans your head from the top down.

This next shot is my post surgery hospital glamour shot – LOL…

My 1 Year Surgery Anniversary…

My only two experiences with brain surgery up until May of 2010 were when I was 7 years old and my Godmother had surgery for a brain aneurysm. Then in the early winter of 2009 when my friend Elaine was informed her headaches were being caused by a brain tumor behind her right optic nerve.  Elaine had her surgery on New Year’s Eve of 2010 and all was successful, yet visiting her in the Intensive Care Unit shortly after surgery was overwhelming just seeing her in so much pain, connected to all the machines and out of it from the medication that I couldn’t help but get emotional.

Then on May 2, 2010 my journey ironically began. While cutting my lawns I blacked out and woke up to my neighbors yelling at me, looking at my shirt which was covered in blood and asking me what happened?  A little concerned, I called my friend Kelli who took me to the emergency room the next day.  The CT scan that was taken of my head revealed a brain tumor the size of a tangerine as the cause of my grand-mal seizure.  That next week On May 13, 2010 my neurosurgeon, Dr. Shafa and his team removed the tumor.

As it has been 1 year since my surgery I will definitely have a quiet celebration of My Life and Determination for making it.  As I’m no different from anyone else who has had or will have brain surgery, I will say this past year has been extremely challenging physically, mentally and emotionally as I’ve had to learn to be continually positive and stay strong which has not been easy.  As I’m not writing this blog for self promotion, I am doing so to hopefully motivate and inspire someone who has gone through or will go through the process of finding out they have a brain tumor and possible surgery with my stories from the past 12 months.

Last, but not least.  I have many people to Thank for walking by my side through this journey which is not over yet, but the one person I must Thank the most is my mother.  From the moment I called her in Chicago and told her the news,   she came home immediately, she has been by my side and there for me every step of the way.  Love You Moms…