"You Beat Cancer By How You Live"

For two weeks I haven’t known what to say. 
 
In short, Mike has a new brain tumor located in an inoperable location next to his brain stem.  There also appears to be significant swelling in his left hemisphere and additional tumors trying to form on edges of the tumor bed.
 
We went from enjoying a fairly normal life and looking forward to the last round of monthly chemotherapy as well as a worry-free Christmas – to desperation, fear and hopelessness.
 
The Dec. 9 MRI scan results at MD Anderson had made us nervous. We knew it was different from previous “non-conclusive” scans because the “shadow” was away from the original tumor area. If it was something trying to form, we focused on the fact it was early and doctors were watching. We also wanted to believe Mike has been doing so well it might just be an anomaly in the healing process. 
 
However, when the radiologist’s official report posted on Dec. 15 on Mike’s private MD Anderson medical record page, I was stunned to see the findings at the top simply stated, “Glioblastoma RESTAGING.”
 
Restaging? That’s impossible. The last few months have been “better than great.” Mike was finishing a remarkable year of healing from surgery, six weeks of radiation/chemotherapy, and managing monthly chemotherapy.  He went back to work a week after surgery and never missed a day of work for being sick unless it was related to a scheduled doctor appointment. His blood tests have been perfect, and other than fatigue, we were certain he was going to beat this unbeatable disease.
 
But while getting ready for work on Dec. 18, Mike noticed a slight lazy appearance on the right side of his face and some difficulty buttoning his shirt.  The next day we made our monthly visit to Dr. Geister to review the report from MD Anderson and prepare for chemotherapy.  Dr. Geister was more concerned about this report and Mike’s symptoms, but Mike passed all the neurological tests to make sure his fine and large motor skills were working.  There wasn’t a sense of urgency since Mike would be at NIH on Jan. 6-7, 2015, for a more detailed MRI. We could get a new game plan in place if the cancer was coming back.
 
The plan was to start Mike’s last round of Temodar on Mon., Dec. 22.
 
Mike’s birthday followed on Saturday and we had a great day celebrating and talking about what we might do to for the “60” milestone that would be upcoming in 2015.  However, I was now acutely aware there were more noticeable changes with his speech as he was missing words more often with a bit of slurring.  We enjoyed dinner and a great performance of Lyric Theater’s “A Christmas Carol,” but Mike was starting to have difficulty with his right side.
 
I can’t tell you why I didn’t insist we go straight to the emergency room unlike the first time the symptoms appeared.  I think we were both in denial.
 
On Sunday, we went to church, brunch and then to my parent’s home in Norman to celebrate Christmas.  The kids were complaining Mike was accelerating and braking too hard, so I suggested I drive the rest of the day in case there was more going on.  We were worried now.
 
On Monday, Dec. 22 while getting ready for work Mike fell.  I still cannot tell you why I didn’t take him straight to the emergency room. We were in shock. Instead, he convinced me to drive him to work and he would see how the day would go.  I drove him to work and cried as I watched him get out of the car.
 
I planned to meet a dear friend for coffee at 8:30. She and I had rescheduled a few times and even though I was distracted I just couldn’t bring myself to reschedule again. I walked right up to her crying. She guided me through calling Dr. Geister and I began to face the reality of what was happening – the cancer was back. 
 
In the couple hours I worked out taking Mike to the hospital and admitting him it was now very apparent by his co-workers at the office he was struggling.  I picked him up and checked him into the hospital at 3:00 p.m. He was started on IV steroids to try and reduce the symptoms most likely occurring due to swelling from tumor progression.  Despite receiving steroids, his decline visibly continued. The cancer was incredibly aggressive and moving fast.
 
Dr. Geister ordered a spectroscopy MRI that could only be conducted at the INTEGRIS Cancer Center.  We checked out of the hospital and met the staff willing to work after hours to conduct Mike’s scan and get an immediate reading so we’d know exactly what was going on by the next morning – which was Christmas Eve.  
 
As we slept the cancer continued its march. Mike fell while he was simply getting out of bed. His speech was worse, his right hand wasn’t moving, and he was having difficulty swallowing and sounding strangled.  

Dr. Geister called with the scan results… After apologizing for making the call on Christmas Eve, I lost count of how many times he said “really” before saying “bad.”
 
He continued to deliver the worst news in the most sensitive way possible.  Without treatment, the prognosis is a month at best.  When Dr. Geister shared this with Mike he didn’t flinch and said rather matter-of-factly, “Well, ok, I’m ready to keep fighting.”  Mike was and is clear he wants to do all he can to get any extra time and quality out of the life he has and he hopes to win.
 
If I could’ve taken Mike anywhere possible to outrun what was happening, I would’ve left right at that moment.  Any amount of hope I had was gone.  The combination of hopelessness, grief and heartbreak was suffocating me.  It was the first time since this started that I literally wailed upon hanging up the phone.
 
What Mike and I share is something I never imagined finding in my entire life. You have those dreams as a child and then a young girl of finding the person who makes your heart skip beats years later; a man who continually romances you with phone calls, cards and letters; looks at you as if you are the most beautiful person alive; and never tires of being in your company.  Mike is my soul’s mate… and he is dying.
 
Dr. Geister arranged an emergency full brain radiation before the Cancer Center closed for Christmas in the hopes it would stop Mike’s progression since the steroids were not. This was our only hope to give Mike the chance of making it try further treatments.  He and Dr. Gilbert had visited extensively and they both agreed this was the best chance Mike had. I fully believe without that radiation treatment, Mike might not have survived.
 
There were so many unselfish acts of kindness by health care professionals at INTEGRIS who worked long after the doors closed on Tuesday and on Christmas Eve to care for Mike and to comfort me when they could’ve been with their families and or celebrating with friends. We had family and friends at our house and the clinic to help comfort our kids and us during those critical few days as well.
 
Christmas was bittersweet.  Over the course of the next few days and in the midst of my anger at God and lost in a painful loop of “whys” and fear, I realized how good He has been to us this year.  We just finished 14 months of life together that most brain cancer patients (GBM4) never experience once they are diagnosed. 
 
Why was I mad at God and acting like an ungrateful child at Christmas? A child who had already forgot about the gifts, blessings and the sacrifices we’ve already received?
 
We shared the news with Mike’s grown sons and then Grace, my 16-year-old daughter, as Mike’s condition as well as my emotions could not be hidden from her. We wanted to wait until after Christmas to tell Sam the news about the cancer. He’s smart and knew something was not right, but there’s a lot of excitement at Christmas that kept him busy.
 
However, even more gut wrenching that Dr. Geister's phone call was telling Sam.  Mike had Sam in his lap and I sat in front of them holding both their hands while Mike began explaining to Sam why he wasn’t well and that the cancer was back.
 
I’m not sure how God handled seeing an eight-year-old boy fall to his knees on the floor crying out “Daddy” over and over, and then clasp his hands in prayer begging God to “let my dad survive. Please, please, please let my daddy stay here with me.” My parents were still with us and Sam asked us all to get on our knees and pray with him… and he cries out to God again to save his dad.
 
Of all the thousands of prayers I know warriors are carrying to God on our behalf, I don’t know how God won’t answer our child’s desperate and innocent plea. The first thing Sam said when he woke up the next morning was, “please tell me it was all just a nightmare and dad doesn’t have cancer again.” I so wish I could, Sam.
 
Life is very different now.
 
It’s filled with uncertainty, broken hearts, discussions we’d put off having, two types of chemotherapy and another round of radiation.  But we’ve been able to smile and even laugh again. I’m even more in awe of my husband as I witness the resilience and tremendous courage he displays as he has immediately gone from working and fully independent, to dependent on me for most everything.  He repeatedly tells me how much he loves me and is always expressing appreciation.
 
Mike also tells me he’s not afraid of dying because he knows he’ll be with God and it’ll only be a short time before we’re together again. But he desperately wants to see Sam grow up and live out our plans of raising Grace together to be a confident young woman. He loves living close his son and wife in Stillwater and proudly watch another son preach online from his church in El Paso, Texas. He adores the grandchildren who lovingly call him, “Papa.”
 
We have so many places we want to go, things to see, adventures to be had, and memories to make at the home we love so much. But, maybe this unexpected turn in our journey can be one of the sweetest even in the midst of unbelievable amounts of pain.
 
So many texts, messages, calls and cards with words of love and encouragement reach us at just the right time. Without knowing the details, just knowing we were desperate for prayer, hope and healing, I promise they carried us through several hopeless feeling days.
 
Right now Mike is stable and is responding well to his treatments – meaning he is not in pain and is not sick to his stomach. That is a miracle and a blessing. He’ll finish 10 rounds of radiation this week and continue receiving Avastin chemotherapy via IV every other Monday and 200 mg of Lomustine chemotherapy orally every six weeks.  He will have an MRI in four weeks to determine if the tumor has shrunk and the cancer has slowed.  If his labs remain normal and he responds well to the chemotherapy, he can receive it every other week up to 24 months.
 
He will receive an evaluation for rehabilitation this week as well to see if his brain can rewire and heal areas that will improve his mobility on his right side. Speech therapy might be another possibility.  And unlike last time when his emotions and auditory comprehension was negatively impacted by surgery, this time he only has difficulty finding words (acute aphasia). The emotions and understanding are still there as is his analytical skills, which is a special blessing to me.
 
I read the sad news today that ESPN commentator Stuart Scott died after waging his own courageous battle with cancer for the past eight years.  The powerful message he left brought beauty to our day and gave me the strength to finally write. 
 
“When you die, it does not mean you lose to cancer,” Scott said. “You beat cancer by how you live, why you live, and in the manner in which you live.”
 
We’ve been adamant that cancer will not win. And no matter what, we will keep living, fighting and holding on to hope.