Apparently, brain surgeries are getting routine around here. So routine that Matt is home from the hospital after just two nights recovering from his brain tumor debulking. We were terrified with the last-minute change of plan to do surgery and thrilled that we can now say, we had nothing to worry about. Here is how that change of plan came to be.

In an effort at reassurance, we sought a second opinion about the feasibility of surgery just before Thanksgiving, the Monday after which Matt was supposed to start radiation and chemotherapy. What was supposed to be a pre-chemo consultation with Matt’s neuro-oncologist, turned into me asking many, many questions. What did the IDH wild type result mean? What were the chances Matt would be alive in 5 years? Was there anything good this could be? What was the point of the next gen sequencing if it couldn’t tell us what we were up against? How would these results change the current plan of starting chemo and radiation next week? What clinical trials might be available? Are we sure there is not a surgical option and how might surgical resection change the prognosis? What would he do if it was his loved one? We were pleading with every ounce of our souls for hope and direction. In a moment of frustration with us, Matt’s neuro-oncologist gave us a referral to a neuro-surgeon at the University of Utah.

We debriefed the conversation in the subsequent hours and at Crown Burger and our now-familiar corner table.

The oncologist had scolded us to be patient, methylation testing might take another month, and that is what he needed most to potentially give a scary prognosis or to tell us for sure that there is no knowable prognosis.

The things we know. One, that we do not have a name for Matt’s tumor and even if we did that it would not predict anything. What makes one person live eleven months and another six years? Science does not yet know. Two, the MRI from the previous week showed no growth in the last month – something that would most certainly have been alarming if present. Either way, it was critical that Matt start treatment right away, no time to delay for second opinions; we do not even have the first.

Three, a recalibration of time is called for. Hope for the best, prepare for the worst.

When first married, in the Army, finding out for the first time how to relinquish control, Matt and I had joked, “The plan is, we have no plan.” And now, sitting in the neuro-oncology consultation room, the doctor had told us, “Live day by day… Learn to let go of your plans. The thing about being ‘Type A’ is that it’s hard to give up on the notion of having control.” 

Having been called Type A and told to let go of our plans, we felt so discouraged. We understood the part about control. However, the oncologist was offended when I asked, “Your notes list four possible rule-outs, what should we pray for?” like the word pray had touched some boundary he dared not ever approach in his line of work. He told us to hope but wouldn’t give us anything to hope for; instead, we got a lecture on evidence-based medicine. We were scolded for reading the medical literature, but he wouldn’t summarize what he knew so far, just that we had to continue to wait with nothing firm to hold on to. We tried to rally our positive thoughts but were shaken.

Two days later we had the consultation with the surgeon, the most bad-ass surgeon to ever walk the Earth, a mom, snowboarder, and a vintage car enthusiast to boot. She assured us that she could do surgery and that Matt would remain himself. She was certain of it. That night the oncologist called to tell us that the NIH did not have enough tissue to do methylation testing. Matt would not have a diagnosis and would probably not be eligible for adjunctive therapies or clinical trials without more tissue. Without a firm diagnosis we would have to assume the highest grade of glioma. So now the oncologist thought surgery was a good idea. Here was our test; we had to relinquish the control we felt we had if we stuck with the original plan. Surgery before radiation/chemo was the best option despite the oncologist telling us at the first consultation that it was not worth the risk. The cancer board had said so. End of discussion… until it wasn’t.

A week later Matt’s surgery was scheduled. The procedure took over five hours. I was a disaster. I couldn’t wait under the fluorescent lights of the surgery waiting room. I walked up the hill to the cancer institute and worked a little in the bistro with its wall of windows and sweeping views of the Wasatch Mountains and Oquirrh Hills to calm me. I then met Tagrid (Javier’s much smarter and better looking other half-- just kidding, Javi) for coffee and she kept me company for an hour until I insisted that I was fine and could go wait for Matt in the surgery waiting room. I was not fine. I admit to having two minor altercations with strangers in that last hour. I am not proud of my behavior. Let’s not revisit that waiting room ever again.

Finally, Matt was out of surgery, and I could see him in the Neuro ICU. He was very painful, but clearly himself as he recovered from anesthesia and the procedure. He told the nurses that I was his mistress. “I am his wife; we have been married for 20 years,” I corrected laughingly. Over the next five hours he gradually became more coherent, and his pain controlled. We sat in his hospital bed together praising God for a successful surgery and anesthetic recovery. 

The next day I put down these words, “As I sit here writing, Matt is upright, dressed, and cognitively intact right next to me. Praise God, he is himself after a plum-sized piece of the tumor was removed yesterday.” The surgeon herself was amazed how good Matt looked the next morning. He was moved out of ICU to the acute care ward and then the next morning was discharged from the hospital. He walked out of acute care and the hospital because that is what you do when you are a rockstar. You take your horse-shoe shaped/sized incision on the side of your head and you parade it right out of that place 48 hours after it was put there.

And then you go to Crown Burger and you show it off there, too.

Matt has a new neuro-oncologist. Because life is too short to deal with that kind of negative energy. We want a rockstar doctor who knows another rockstar when she sees it. The surgeon saw it and had the confidence in her skills and Matt’s strength to make a dent in that gremlin inside Matt’s head. We meet Matt's new neuro-oncologist tomorrow and start over the whole process of trying to learn what we are up against. We do so with these words on our hearts, "When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze." Isaiah 43:2 NIV 

Matt had a debulking procedure, meaning the surgeon left gross disease. The extra tissue for diagnostic testing will ultimately enable us to have a diagnosis for Matt's tumor, the tissue biopsies from his first surgery having ran out before we could get a final, bottom-line diagnosis. There is some therapeutic benefit to the procedure, too, because now his brain has room to swell during radiation. And there is a small chance that having removed some of the tissue will improve his survival. 

Matt's vision loss remains his only clinical sign. The tumor destroyed those optic tracts, which now are probably forever outside of Matt's body, fixed in formalin for the pathologist to look at.

I wish we could say that he is cancer-free, or even tumor-free, but the good news for now is that Matt is himself and doing well post-op.

Mon Nov 24 - Neuro-onco appt, surgery referral

Wed Nov 26 - Meet with surgeon, surgery becomes an option (love her confidence, but scared from initial information that the tumor board had said something like- its not worth the risk); call from oncologist while on our way to a dinner, tells us "surgery is an option but you have to decide..."

Nov 27 - Smoke a turkey and feast with friends!  

Dec 1 - Radiation and chemo planned start date; surgery quickly scheduled for Dec 8

Scary week flies by

Sat Dec 6 - Pre-op haircut to save the cleanup later; pre-op labs

Sun Dec 7 - Surgical planning MRI; figure out how to not freak out Kim and sleep with a bunch of buttons stuck to my head.

Mon Dec 8 - Depart 4 am to check in at the hospital before 5:30 am; 7:30 am anesthetized, dream about watching the sunset on our mountain in Idaho with Kimmie; 1 pm-ish, wake up in a new ICU room with wires and hoses tethering me to my new bed; find my beautiful wife throwing blankets over me. Discover 10/10 pain. Discover another unknown tube in an embarising place but am glad I have no idea how it got there. Pain under control with the help of a lot of narcotics by 6 pm.

Tues Dec 9 mid morning, move from Neuro ICU to Neuro Acute Care and gain a much more comfortable bed, a heat pad and a sand bag to work out the horrific kink in my shoulder and neck muscles. By late afternoon marked independent by physical therapy and occupational therapy, walk the halls with nurses!

Wed Dec 10 - Discharged in time for lunch; walk out of the hospital and go to Crown Burger. Home in time to see the boys after school!  

Thurs Dec 11 - Against pharmacist's advice, take skid steer loader for a spin in the driveway to make sure the levers still do what they are supposed to do; all systems go. Attend Barrett's Christmas concert!  Notice I parked the skid steer and snow plow a little close to the trailer. Note to self, continue to back the snow plow setup into its hole this winter so the trailer remains on the left and the house on the right.