The Suburb Woman
Engraved In His Palms
Posted on August 1st, 2014

I can’t believe I’m still surprised when something happens that can only come from God.  Why have I tried to rely on Him on a day-to-day basis since the beginning of this journey, yet seem surprised when he makes his presence so clear?

This past July 29-30 was our bi-monthly trip to Houston for MRI scans, labs and the visit with our neuro-oncologist. Our “new normal” has been adjusting our schedules to knowing how Mike will feel around cycles of his chemotherapy. Otherwise, life goes on.

Mike has done much better than I ever expected 10 months into his diagnosis.  All you have to do is Google, “Glioblastoma Multiforme Grade 4” to know we are experiencing a miracle.  But it’s the unpredictability of the disease that makes it hard to not prepare for the worst with each trip – especially after our scare in May. Leading up to the scans there is always anxiety and tension. 

In order to ease some of the anxiety the weekend before, we stayed around the house to celebrate Sam's birthday and went to “At The Movies” at LifeChurch.  For those who are familiar with LifeChurch, every July the messages are centered on a theme from a popular movie from the previous year. Sunday’s message was Captain Phillips. It was timely, to say the least, focusing on being prepared for times of spiritual attacks and warfare.

Despite how “close” I thought I was to God, I wasn’t anywhere close to being prepared for this past year. I had blogged last July an entry called “Trying to Find A Quiet Place.” I lamented about moving, my mother-in-law’s illness and sudden death, moving again, starting my kids in new schools, and other things I can’t recall now. Losing Pearl was a shock, but I can say this past year pushed me to extreme limits emotionally, mentally, physical and spiritually. Honestly, I always thought the poem “Footsteps” was a little corny too until I knew what I meant to be carried.

I’ve been selfish from the beginning. I want Mike here with me. I want him to be a father, a grandfather, a nephew and a friend. Each step of this journey I have faith that God will see us through, but I still have angry and fearful moments. Why is it so hard to believe when you believe?

Our kids went with my parents for a weekend trip with their cousins while Mike and I headed to Houston. I’m always in constant prayer the scans will be fine, but if they’re not I ask for “assurance” God has a plan bigger than mine and that Mike will be comforted.

As always, we have people along our path who offer encouragement as Mike tells his story. Our driver, Mario, repeatedly tells Mike, “God bless you,” over the two days we’re in town; the Hilton shuttle drivers are now like friends and happy to see him back and looking better each time; the clinical researcher overseeing a trial for lymphoma tells Mike a story about her friend with inoperable brain cancer who is living well eight years later; the waiters at Pregos are glad to see us and encourage Mike to keep up the fight; we have endless posts on Facebook; and the lab technician taking his blood tells him with all sincerity, “I pray for you.” Yes, there are moments when I wish cancer wasn't hanging around.  But I’ve never known a time in my life when I’ve felt more real, more alive or more close to God - even when it hurts.

Dr. Gilbert gives us the good news right away: “Your scans look better than last time.”  There are two small areas the doctors have been watching from the beginning. I haven’t written about them because I don’t want to make them “bigger” than they are.  There is an equal chance they are tumors or necrosis from radiation. They’ve remained the same size until this scan – when they decreased.  His tumor bed area continues to “fade,” which is all good news. 

The other news is Dr. Gilbert has decided Mike will only do 12 rounds of temolozide chemotherapy. This means the dose in December will be his last for now.  That is exciting and a little scary at the same time.  We know the chemotherapy continues to fight cancer cells that exist and the thought of living without it is unsettling. But, a body can only take so much.
However, our normally personable doctor is more subdued this time. After the chemotherapy discussion he says, “this is probably the best transition to tell you I will be leaving MD Anderson at the end of the year.”

Now don't get me wrong – I love MD Anderson. Even though its' halls and waiting rooms are filled with reminders of the fine balance between life and death – we find it to be a very spiritual and uplifting place. 

But, ultimately other than God – our trust and relationship is with our doctors:

Dr. Brian Geister with INTEGRIS Health was and is a Godsend when he walked into our lives the morning the tumor was found in Sept. 2013.  He set our path in motion for surgery and continues to be our trusted doctor in Oklahoma City; 

Dr. Amy Heimberger was the surgeon we had complete confidence in to perform the aggressive and complex surgery in Houston and who provided outstanding care in the days following surgery; 

Dr. Melisa Boersma went above and beyond as our radiation oncologist and made sure to blast away even more cancer cells without further harming Mike.  I will never forget the special attention she paid during a few difficult days and the sweet conversation she had with Sam during a visit when he was worried about his dad;

And, last but certainly not least, Dr. Mark Gilbert is our incredibly personable and professional neuro-oncologist specializing in GBM who manages Mike's continued treatment.  He’s never in a hurry when we visit and happy to talk about the details of Mike’s treatments as much as baseball and travel.

So, for him to say he was leaving Houston made our hearts drop.

Dr. Gilbert continued, “I’ve loved my years at MD Anderson, but I couldn’t pass up this incredible opportunity to accept a position at the National Institutes of Health (NIH) in Bethesda, Maryland.”

I really wanted to be happy for him, but remember, I can be selfish.

“We have a few months to work out the details and I can recommend one of my outstanding colleagues to you here …”

I’m not sure what the conversation sounded like in Mike’s mind, but mine was: “Ok God, if it’s in your plan... I know you see the big picture, but I sure wasn’t ready to change doctors … and you know change is really hard for Mike right now...”

And then I heard Dr. Gilbert say, “… or you have the option to follow me to Bethesda.” He continued to explain the benefit of being at the epicenter of groundbreaking research, how Mike’s care would be free and he thinks there would be stipends for travel. He also continues to passionately explain how he wants to find more aggresive ways to fight GBM and prolong lives. 

When Mike comes off the chemotherapy he will continue to have MRI scans every 60 days for the 12 months following. If all goes well, he will go to every three months for the next year; every four months the following year; and every six months for every year after that.  That’s a lot of trips to the Nation’s Capital.  

It’s unbelievable to me with all the technology andtreatments for so many diseases, “no contemporary treatments are curative” when it comes to this beast.  Dr. Gilbert is hopeful that will change in our lifetime – in Mike’s lifetime – and he believes going to NIH is the right next step for him professionally.

We have time to decide on Houston or Bethesda and tell Dr. Gilbert we’ll see him in September and plan to have a definitive answer then.  Mike and I repeatedly congratulate him and thank him for his honesty and his offer.

We head to the airport with almost another two months of relief in front of us from what is coined as “scan-anxiety” in the GBM world.  A trip was tacked on to Taos as an “adult vacation,” so our flight is headed to Albuquerque instead of Oklahoma City. Mike and I agree there is plenty of time to discuss and read about the new decisions in front of us.

And this is where the story gets really good …

While waiting for our flight we research the cost for flights to Reagan National versus Houston Hobby, estimate how much we pay for healthcare and pharmaceutical deductibles, and reason the cost effectiveness to support our admiration of and trust in Dr. Gilbert.  But the truth is we don’t know anything about Bethesda and it seems a long way away from Oklahoma. Maybe we’re meant to stay in Houston?

We board the plane – Southwest Airlines – argue a bit about the seating location I’ve chosen (Mike feels it’s too far back), and then settle down for the two hour flight.  A lady I observed at the airport, who caught my attention for no specific reason, chooses the aisle seat next to us.
The first hour I sleep, Mike reads and she flips through a three-ring binder that includes copies of several Congressional letters.  About 45 minutes from Albuquerque we strike up a conversation. I can’t recall how it started, but it included Mike talking about his surgery and why we were flying from Houston to Albuquerque.

He proceeds to tell her we have a decision to make in regard to following our doctor from MD Anderson to the National Institutes of Health. Her eyes get wide. “I live in Bethesda!” She exclaims. “In fact, my office is in the NIH complex! MD Anderson is wonderful, but you must follow him to Bethesda – it is an incredible organization and facility. You will be in the best hands in the world!” 

To paraphrase Humphrey Bogart, “In all the planes, in all the airports, in all the seats in the world, she had to sit next to mine.”

There are no coincidences. No chance encounters. For the next 45 minutes she explains how easy it is to fly to Reagan National and it’s only a 20-minute metro ride to the heart of the NIH campus. She pulls out a card and writes down all her contact information. She has the names of hotels and says she’s more than happy to answer any question we have as we start planning. As we say goodbye in Albuquerque she emphasizes again to contact her and, “We must have dinner when you come!”

It’s hard not to feel separated from everyone much less God when you find yourself in the midst of almost unbearable circumstances. I’ve felt it. Mike’s felt it. Our kids have felt it. I’ve watched as others wage what seems to be losing battles against cancer and I ask “why” a lot.
Making life-and-death decisions can feel very lonely too – like throwing darts at a wall and hoping something sticks. I don’t know why it’s so hard for me to embrace God’s words in Isaiah when he says, “I will never forget you! See, I have engraved YOU on the palm of MY hands!” (49:16)

However, as much as Mike and I love MD Anderson and will always hold the bittersweet memories dear in our hearts … we will start learning more about Bethesda and what we need to do for this transition. God clearly “spoke” his direction. We are in His hands no matter the path this journey takes us and we know how it ends – but we’re going to fight to keep Mike here for as long as we can.

“For I am certain that nothing can separate us from His love: neither death nor life, neither angels nor other heavenly rulers or powers, neither the present nor the future, neither the world above nor the world below – there is nothing in all creation that will ever be able to separate us from the love of God which is ours through Christ Jesus our Lord.” – Romans 8:38-39 (Good News Translation) 

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