On Friday, January 25th, 2013, I found out that my husband had a massive brain tumor. This came as quite a surprise to both of us, as a tumor of this size should have caused some noticeable symptoms as far as his behavior goes.
Last fall, Ben had several episodes of sleepwalking/talking that were out of character for him. He would groan and shake while he was sleeping and then when he would finally wake up, he didn’t remember where he was, who I was, or what happened. By the morning, all of this was forgotten completely. It was during this second episode that he told me he was having chest pains, and I woke the twins and took all three of them to the ER. After three hours of waiting (which he still does not remember, to this day), they released us and told me that there was nothing wrong (despite the fact that he didn’t really remember who he was there or why he was there! We chalked it up to strange sleepwalking tendencies and put it out of our minds.
When he got home from two weeks out of the country on the 18th, the twins and I were ecstatic. We had definitely missed having him around. When two nights later (Sunday) he had the same type of episode, I chalked it up to lack of sleep and let him sleep late Monday. However, shortly after we put the kids to bed on Monday night, he headed up to his office and I heard him sit down at his desk while I was downstairs in the living room. The tell tale groan a few minutes later sent me running. I found him bleeding from biting his tongue and flinging his arms around and shaking in his chair. His body was tight and it took me a minute to get the chair out of the way and him laying on the floor. All this time he was biting his tongue and bleeding from the mouth. I videoed him (as he had requested the last few times), and sent a message to his family to pray for him. I debated taking him to the hospital, but didn’t have much confidence in them actually doing anything for him. So instead, I helped him to bed and watched him fall asleep. I waited an hour and woke him back up. We talked for almost 15 minutes before he could tell me who I was, he continued grasping for words and saying, “I don’t understand” every time I asked him something. I had him talk to his parents on the phone and then promise me that he would be seen by a doctor in the morning. Then I let him go back to sleep.
I was not surprised when Tuesday morning he didn’t remember this conversation. He wouldn’t watch the video of himself, but I did make him look at the blood and the mess on his office floor from his thrashing around. He had been away from work for over two weeks at this point and said he didn’t think he would be able to go to the doc anytime soon, but I gave him til lunchtime to get an appt before I started calling myself. He went to see his battalion surgeon right after lunch. His battalion surgeon gave me a call to get my side of the story and I explained the seizure like behaviors to him. He warned me not to use the word seizure when describing his behavior until we knew for sure what was going on… and said he felt that there was a logical explanation for everything. He ran some tests and put him in for bloodwork and then scheduled an MRI for the following Sunday afternoon.
The next day his mom and sister arrived at the house to help us figure out what was going on. I was a little worried about Ben driving, but his surgeon said minimal driving would be okay for the time being so I let him head out to work. It was the next few days when I really knew something was wrong. He was walking around with his head in the clouds in a sort of daze, not really able to focus on anything. The hospital called on Thursday afternoon to cancel his MRI appt and reschedule it for a week later and the crazy me came out. I insisted that Sunday was already waiting too long, and he couldn’t be seen later, that it should be sooner. A callback a short while later scheduled us for Friday morning.
On Friday, we arrived at the hospital for his MRI and I waited for over an hour and a half for him to finish. Then I dropped him off at work and waited for him to call for a ride home. Not even an hour after I got home, the front door opened and in walked Ben with his battalion surgeon. He got the results right away and brought Ben home to be with us both to discuss them. The scan showed a 6.7cm x 4.6cm x 4.5cm mass on the left frontal lobe of his brain. It was massive and it meant that Ben was not allowed to drive, work, jump, or anything else until we got a consult with a nuerosurgeon. His appointment for the hospital on post was cancelled and a consult was made for Monday morning at 8am.
He spent the weekend researching, but we both knew that the surgeon was going to tell us that the tumor needed to be removed. Ben’s mom kept the kids for us on Sunday morning so that we could go to church and see our friends children get baptized (their service was during naptime) and we spent the trip to church talking about why us? Why was this something we were having to face? The church service was about Life Circumstances and was completely fitting for us, and the song Blessings by Laura Story brought tears to my eyes. It was so fitting for our situation and was just a reminder that God was in control, and was going to use this situation to His glory.
Our appt on Monday came as no surprise to us. The doctor said that he felt the tumor was a higher grade tumor (a 3 or 4) and that it was more aggressive than he likes to see. He told us the lines were not clear in it but that he felt it needed to be removed as soon as possible. We discussed the surgery and the likely outcomes, and before we left had scheduled surgery for the following week. After that came a series of appts and preop testing while at home we were working on cleaning up our eating and “living”. The day we signed all the waivers and liability forms Benjamin was asked to participate in three studies for Stage 4 cancer. This was our first indicator that told us that was what they were expecting.
On Wednesday, Feb 6th, Benjamin went in for surgery at Vanderbilt Medical Center. His entire family showed up the night before (mom, dad, 3 brothers, 2 sisters, and even my parents) to pray with us and be with us for the surgery. My parents babysat for the twins the first day, while the rest of us sat at the hospital to wait and pray. Benjamin and I had a great support group of friends from church there to be with us as well. The surgery started around 1:00 and ended somewhere after 6pm. The doctor came to see us in the waiting room and allowed everyone to gather around to hear about the surgery. He said he got as much of the tumor as he could see but that like he had believed it was definitely aggressive and that there were no surprises. He still expected a higher grade tumor.
I was able to join Benjamin as soon as he woke up. It was only a short while before he was able to go to his room in the Neuro ICU and he was able to see his parents for a few minutes before they went back to our house to keep the twins overnight. By the next morning Benjamin was ready to be up and out of bed and even took a walk around the hospital with the Physical and Occupational Therapists. And knowing that he was a “math” guy they even gave him a simple math problem to do… he answered it in his head and they asked me if I had a calculator to check his work 🙂 He was doing so well that they moved him out of the ICU to a regular room to stay the second night. The doctor came to visit us in the middle of the night during a break from surgery and showed us his follow up MRI. Again he told us he felt that it was a higher grade aggressive tumor, but that he was able to remove most of it. The small area that was left, he felt was too close to Ben’s language area of his brain to safely remove, but that it would continue to be monitored. We were home less than 48 hours after surgery, and Ben even took a 3 mile walk around the neighborhood with his mom last night!
And now we wait. We go back to get his stitches out this Wednesday and we are hoping/praying that there will be an initial report on what type of tumor it is by then! Continued prayers are appreciated as we continue to try to return to our new “normal.”
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life