Monday, November 2, 2015

Our Story (So Far)




My name is Joe Boronat, I'm forty years old, a former pastor, as well as a youth pastor. I'm married to Kathy, my beautiful wife going on fourteen years, and am the father of a precious and precocious girl, Isabella, who is almost three years old. 

I also have been diagnosed with Glioblastoma Multiforme, a very aggressive, terminal brain cancer.

This is our story (so far).

I had a grand mal seizure in the early morning hours of July 4th 2011 when I was a pastor in Culpeper, Virginia.  The only way to describe the seizure was it felt like I was vomiting sound. My poor wife awoke to hear her husband screaming. My body was rigid, arms up over my head, and in the middle of the seizure I stopped breathing. Kathy called 911 and performed CPR.

Before this seizure, I was completely asymptomatic; no headaches, no blurred vision, no nothing.

The paramedics took us to the Culpeper Hospital ER, and we waited.  Finally, when they saw me, they dismissed it.  My wife was enraged when the emergency room doctors refused to do a CAT scan. One of them went so far as to ask Kathy "Do you realize how much radiation we're talking about? You don't want that in your husband's head." It was the 4th of July, so their MRI suite was closed. The nearest facility with an active MRI was an hour's drive away. The doctor said he was 90% sure it was a night terror.

The following week, we saw Dr. George Stergis, a local neurologist who saw how concerned Kathy was and decided to order an MRI for the following Monday.

To tell you the truth, I had mixed feelings about the MRI.

Sure it would give us peace of mind to know that everything was okay up there, but MRI’s are really expensive. Because I rarely went to the doctor, I thought I didn’t need a good health insurance policy.  So, I chose the high-deductible plan.

An MRI would cost us thousands of dollars out of pocket, but I had it done.

Just in case.

Two hours after the MRI, Dr. Stergis had Kathy and I come back to his office.

Pointing to the MRI he said, “This is not a night terror.”

I had a tumor the size of a large egg in the frontal lobe of my brain. As my wife started weeping, Dr. Stergis explained that I needed surgery to have it removed.

Immediately.

It was at that very moment that I felt the supernatural hand of God giving me peace. I can’t describe it in words. I just felt the LORD's peace wash over me.

Jesus said in John 14:27:"I am leaving you with a gift–peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid.”

I just knew that everything was going to be alright.

The neurologist promised that he would get the very best doctors available.  The next morning, we were sitting with an experienced neurosurgeon, Dr. Jeffrey Elias, at the renowned University of Virginia Hospital in Charlottesville, scheduling surgery. 

He was confident that the operation would be a success, given the location of the tumor. It was in the region of the brain (left frontal lobe) where speech is processed. I might have some affective aphasia (having difficulty finding the "right" words to complete my thoughts), but nothing that would seriously impair me.
I told Dr. Elias to be as aggressive as possible to get the entire tumor out.  We left the visit, and Kathy remarked how much Dr. Elias's calm demeanor put her at ease.

I remember her words, "Like an angel sent from God."

After lunch, we visited with Dr. Benjamin Purow, a neuro-oncologist (brain cancer specialist).  Another MRI was scheduled for Sunday, and brain surgery would be scheduled for Monday morning.

Wednesday morning I returned to UVA and visited the neurosurgery clinic again. I filled out paperwork for the procedure, and had blood work done. After the blood work, the nurse mentioned that my blood type is B+.

Huh?

Growing up, I always was told that it was O+.

So now when people ask me why I’m so cheerful, I respond "I can't help it, my blood type is ‘Be Positive’."

Sunday finally came, and we made the drive down to Charlottesville. The afternoon before surgery, I was given fiducial dots (small round foam stickers) all over my head to guide the neurosurgeon to precisely know where the tumor tissue was. Kind of like a GPS for my brain.

There are about 30 Global Positioning Satellites in orbit around the earth. If a device that has a GPS chip (like most smart phones) can detect at least 3 of them, it can get a very accurate fix on your location.

The fiducial dots work in the same manner. They are used to help the surgeon get an extremely accurate fix on the tumor’s location.

I had my MRI, and was released until early the next morning. So there I was, walking around the UVA campus, with a bunch of foam stickers resting on shaved patches of my head.

I had forgotten my hat.

I remember in pre-op the next morning, asking the nurse that since they were going to have my head open anyways, if they could put in some superpowers. 

Without missing a beat, she asked “Super-strength, or the ability to fly. Which would you like?”

Being able to fly sounded really cool, so I asked for that (however, I ended up with super-hearing; more about that later).

Surgery was successful, and I awoke propped up in the Neuro ICU. I was able to make out that there were people surrounding me.  Besides the obvious nurses, there was Kathy, my dad and my step-mother.  They asked me if I could speak.  I made a noise of some sort, and the next few days were rather hazy. 

The day I left, I saw Dr. Purow, and he had good news.  The tumor was a Grade 2 Oligoastrocytoma.  It was benign and so I didn't need radiation or chemotherapy. However, I did need to get routine MRI's to make sure that if it did come back (and there was a very high possibility that it would), they could catch it early enough to assess all my options.

With the mass removed, I was back to work and the gym within a couple of month’s time. 

Nothing short of miraculous.

Now about the “Super-hearing”.  I always had trouble hearing what people were saying.  My wife would probably say that my problem wasn’t HEARING but rather LISTENING.  Anyways, my hearing got perceptibly sharper.  For example, my wife and my sister would be having a hushed conversation in the kitchen, and I would be in the next room over.  I would ask them to please speak more quietly, because I could hear every word they were saying.

As time went on, I got used to getting MRI's every 2 months, then every 3 months, then every 4 months. 

My wife got pregnant during this time, which was a huge answer to prayer, for we had been praying for a child of our own for years.

I had been working as a bi-vocational pastor at the time.  My secular employment was a part-time job at the Culpeper Library.  While I did have flexible hours, I didn’t get nearly enough of a salary to support a family.  Kathy had a teaching position, but even with her salary, we were just scraping by.

So I prayed, and I looked, and I applied for full-time employment for months.  Nothing.  So I put it in God’s hands and let Him take care of it.

You see, there WILL come times in your life when you have exhausted every resource under your control and will have to depend on God alone.

Paul, said in Philippians 4:6-7: “Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.”

So I trusted He would provide, even though Kathy’s due date was rapidly approaching.

Her due date was Friday, November the 9th.

I went to work at the library on Monday, November the 5th.  And lo and behold, I got two calls that morning for interviews; one from the Town of Culpeper, and one from Germanna Community College, which was located in the next county over.

I went to the interviews, both of which were scheduled on November the 8th.  I began each interview with the following disclaimer; 

“If I seem nervous, it’s because my wife’s due-date is tomorrow.”

The Town of Culpeper position was for a Housekeeper.  It would be a full-time job with full benefits, insurance, retirement and I’d get a Town iPhone to boot.  I’d be responsible for cleaning Town owned facilities like Public Works, Town Hall and the Police Department.

Public Works, where I’d start each day was literally 5 minutes from our home.  Oh, and the hours were extremely flexible.

Germanna’s interview was for a cashier.  It was part-time, no benefits, and a half-hour commute each way.  Plus, I’d have to travel to Fredericksburg (another 20 minutes) some days.

I was so excited, that when I picked Kathy up from her job (we only had one car at the time), I told her that I was going to take the Town of Culpeper position if they offered it to me.

That night, Kathy’s water broke.  The next day, Friday, November 9th, at 5:10pm, we welcomed Isabella Katherine Boronat to the world.

Later that evening, I checked my phone and saw that the Town of Culpeper had left a message.

They offered me the position.

I gave the Library my 2 weeks notice, and joined blue-collar America.

We spent that first year experiencing the ups and downs of parenthood.  




Well, since I was on sleep medications, Kathy was the one experiencing the joys of sleepless nights.

Now we had asked Dr. Purow to give us word if anything showed up on one of the MRIs.  “No news is good news,” he replied.  We had a routine MRI the Thursday before Isabella's 1st birthday party.  Not hearing from him, we assumed the best.

We enjoyed her birthday weekend, not realizing the difficult road we were just about to undertake.













We had gotten familiar by now with the UVA clinic.  We would drive the hour down to Charlottesville, maybe catch lunch at a restaurant, go to the clinic and wait to see Dr. Purow, who always came in smiling.

He wasn't smiling this time.

The first words out of his mouth were, “How are you feeling?”  

The tumor had returned, and he felt the best course of action was to do another brain surgery.  I met with a different neurosurgeon, Dr. Ashok Asthagiri, the following week.  I stated that I wanted for them to be just as aggressive this time around.

The only problem was that since the tumor had been almost completely removed the last time, if they were as aggressive this time as well, they would risk severely damaging my ability to communicate. 

Besides that, their fear was that it had already spread out microscopic fingers into other parts of my brain.  It was impossible to get all of the tumor out because it would mean taking out half my brain.

I wanted to schedule surgery as soon as possible.  But with the Thanksgiving weekend looming around the corner, they suggested I wait until Monday, December 2nd.  With reluctance, I agreed. 

However, it turned out for the best.

God knew more than I or the doctors did.

As an employee of the Town of Culpeper, one of my responsibilities was to buff out scratches that build up over time in their facility’s waxed floors.  You see, by buffing the floors with a rough pad, you remove a very thin layer of wax, and the true glory of the floor's finish is revealed.

Strangely enough though, it’s not the floor that catches your eye, but what the floor is reflecting.  As I was buffing the floors, I was constantly trying to see if the fluorescent light tubes which were in the ceiling above were becoming sharper.

The floor was not my focus, what the floor was REFLECTING is what I was focused on.

It's the same thing as looking in a mirror.  You are not actually focused on the mirror itself, you are looking at what the mirror is reflecting.  The only time you actually look at a mirror is when something is wrong with it.  A streak of shaving cream or a dirty hand print distracts from the reflected image.

In those cases, the mirror calls attention to itself.

The day following Dr. Purow’s report, I moped around at work while telling people the “bad news”.

Now I am by nature a very positive person, so my standard response to the question “How are you doing?” is “I’m doing great!”

But that morning I modified my response to “I’m doing very well despite the circumstances.”

After saying this two or three times, God grabbed me by the shirt-collar, yanked me aside, and asked me two questions.

“How are you feeling?  I mean how are you REALLY doing?”

“Um, good actually…”

“Then why are you calling attention to yourself by tacking on that disclaimer?”

He left me to chew on that for a while, and I saw the point He was trying to make.

By calling attention to myself, I was not reflecting the Peace and Joy that God had so graciously given me.

I was not reflecting His Attributes.

I was not reflecting Him.

All the attention was focused on me, Joe.

Jesus said in Matthew 5:14-16, "You are the light of the world–like a city on a hilltop that cannot be hidden.  No one lights a lamp and then puts it under a basket. Instead, a lamp is placed on a stand, where it gives light to everyone in the house.

In the same way, let your good deeds shine out for all to see, so that everyone will praise your heavenly Father."

Once again, the afternoon before surgery, I was given fiducial dots and an MRI.  

This time around however, there was an MRI machine in the surgical suite so that in the middle of surgery, they could scan me again to make sure they got out as much of the tumor as possible.  The surgery would take longer because they would have to account for every surgical instrument before firing up the MRI over here.

Strong magnets and very sharp metal objects are not a good combination.

The morning of the procedure, I arrived at the hospital, suited up for surgery, and had my wife and some of my fellow pastors from our sister church, Mosaic, waiting in pre-op with me.

Dr. Asthagiri somberly walked in and asked them to leave for a few minutes.  He then proceeded to share that the MRI had changed since the last one-two weeks ago---a new tumor had grown. It was in an area that was risky and they would try their best with taking the tumor out.

If I had had the surgery soon after the first MRI, the doctors may not have spotted the new, aggressive growth...

And I might not be writing this.

So they performed brain surgery, patched me up, and several days later I was hospitalized again for having multiple seizures at home. At the hospital, the surgeon gave us the news of the biopsy.

It was cancer. A malignant, Grade 4 Glioblastoma; the worst, most aggressive brain cancer. There is currently no cure for this disease, and life expectancy could be anywhere from two months to four years after diagnosis.  Dr. Asthagiri broke this news to us, and before leaving my bedside, said, “Please don’t look up this cancer on the Internet.”

Later on that day, Dr. Purow came by and told us that even though I had certain factors that could extend my life, he couldn't give me a time frame.  “Everybody’s different,” he said.

And so a month after surgery, I went through 30 days of radiation and oral chemotherapy (a pill called Temodar).  Then over the next few months I did several more rounds of Temodar. 

This whole time, we were in a whirlwind of getting paperwork for disability, FMLA, insurance, and trying to get the bank to take back our home. 

We also started planning for my funeral. 

All through this time, God provided for ALL our needs and continues to do so. 

Now remember, I got the Town of Culpeper job the day Isabella was born.

We got the bad news about my tumor coming back, after the weekend of her first birthday.

I had been a Town of Culpeper employee for JUST OVER a year.  Which meant I was eligible for disability retirement benefits, medical insurance, and a disability pension.

God has blessed Kathy and I with co-workers who donated enough sick-leave for three months.  The last day I reported for work was Monday the 27th of November, 2013.  The last paycheck I received from the Town of Culpeper, however, was the 26th of February, 2014. 

That’s THREE months’ worth of sick days on top of the financial gifts we received from the Town of Culpeper, and the Town of Culpeper Police Department.

Our friends helped in so many ways, that I don’t have time to share all of them, except one.

Many came and helped load the moving van, but my supervisor, the Reverend Lanny Horton, agreed to drive the moving van all the way from Culpeper to Miami.

Our families pitched in and helped us get settled.  We are currently residing rent free at a house my sister-in-law owns.

Now it hasn’t all been stress free.

After getting here, we had a time of getting adjusted, I’ve had more seizures, more bills, more paperwork, more calls to the bank.  My body stopped tolerating Temodar, so we had to change my chemotherapy to an IV treatment called Avastin every two weeks.

And Isabella had a seizure the week after Kathy started a new job, so poor Kathy had yet another patient to care for…

But regardless, we have seen the Hand of God through all of this. 

We are a blessed family, and Gateway Baptist Church is among the greatest blessings we've received.  

I was asked by one of the youth here at Gateway about what God wants me to do with this. 

I couldn’t answer at the time, but I think I know now.

John 9:1-3 says,

As Jesus was walking along, he saw a man who had been blind from birth. "Rabbi," his disciples asked him, "why was this man born blind? Was it because of his own sins or his parents' sins?"
"It was not because of his sins or his parents' sins," Jesus answered. "This happened so the power of God could be seen in him.”

People are amazed about how cheerful I am even with the threat of this incurable disease hanging over me.  But I have peace that can come only from God.  And I believe that I am still alive and healthy to be a showcase for God's Grace. 

“So (that) the power of God might be seen in (me).”

I don't know how long I'll be here.  The truth is, none of us know. 

All my MRI’s have been stable so far.  Each stable MRI gives me a new lease on life.

The beautiful thing about cancer is that it forces you to stop and give thought to what really matters in life.

Our relationship with God, and our relationships with others.  Those are the only things that we can take with us as we pass from death to life.

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