Love is Patient.

By Julie

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I wrote this back in October in the week between Travis’ diagnosis and his first brain surgery. At the time I wasn’t ready to share it but I am now. We’ve never been much for celebrating Valentine’s Day (instead we observe the Liz Lemon inspired Anna Howard Shaw Day in our house), but I’m feeling sappy and mushy this year so… Happy Valentine’s Day, Travis! I promise to love you as patiently as I possibly can for as long as you’ll put up with me.

“A reading from 1 Corinthians 13: 4-7… Love is patient…”

If you grew up attending catholic weddings, or I guess really any weddings, you know the rest. We went a completely different route at our wedding selecting non-traditional readings that compared us to trees and made the guests chuckle. That was important to me. I wanted everyone to say it was the best wedding ceremony they’d ever been to. Not too long, not too short. Nothing cliché. Just enough tears and just enough laughter.

I claimed it was because I wanted the ceremony to be uniquely “us,” but I’d be lying if I didn’t admit that the competitive side of me wanted some sort of ribbon or trophy for choreographing the perfect event. I guess it’s good that I didn’t pick the reading from first Corinthians, because I already screwed up the part about love not boasting before I even said “I do.”

In re-reading the whole of the scripture I realize now that I knew nothing of what love truly was on the day of my wedding, and that it has only been in living through life’s little lessons that my understanding of truly loving another person has started to take shape. My husband has shown me that love protects as he’s held me through loss and heartbreak. We’ve shown each other that love is not self-seeking by taking turns putting our own careers on hold to help advance the other’s. And we came a long way in trust and perseverance while spending almost a year of our marriage living apart out of necessity during a job change.

But it’s the first line that has evaded my understanding most thus far. Love is patient. Impatience is one of the hallmarks of my personality. I’m a planner. I make lists that include things like “make a list for your upcoming trip.” I have a five year plan, a ten year plan, and a new ten year plan that includes what to do if the initial five year plan somehow turns into a seven year plan.

I am not patient. I have not loved patiently… until this week.

Patiently loving your husband means stopping yourself short of finishing his sentences when he needs a little longer to find the words he is trying to say. It means holding his hand as you walk through a crowded mall because the noise and distraction are too much for him to handle right now. It’s ordering food you know he likes for him so that he doesn’t feel ashamed when he can’t remember the word for “cheeseburger.” It’s not yelling or getting worked up when it takes him two hours to get ready to go to a doctor’s appointment because you told him it was too cold to wear shorts and now he’s looking for winter hats. Patiently loving is reminding him in the moments that he forgets that he has cancer, that he is going to have brain surgery, and that he’s going to be ok, even when you’re not sure you believe the words you’re saying yourself.

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Hamilton

By Julie

In the past year Travis and I have listened to the Hamilton sound track from start to finish at least 20 times. That’s over 48 hours of Hamiltonian immersion.

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Photo: Sara Krulwich/The New York Times (August 2015)

That may seem excessive to some, but when you consider that the majority of that time was spent in the car driving 3.5 hours round trip from our house to the Wilmot Cancer Center in Rochester, it doesn’t seem so bad.

Plus, Hamilton is awesome so that makes it okay too.

I have always been a theater person and a road trip show-tune-singer, but Broadway car karaoke is a totally new thing for Travis. While he has warmed to most of my hobbies in our nearly a decade of life together, listening to show tunes and attending live musical theater had remained things that he seemingly did for me instead of truly with me…until I introduced him to Hamilton. His love of history and his hatred for Thomas Jefferson (no, seriously, ask me about it) were enough to set the hook and within a few songs he was fully invested in the story and the music.

As I looked for ways to help Travis improve his speech and communication challenges over the past several months, I found another excuse to keep Hamilton on repeat. It was suggested to us while Travis was still recovering from brain surgery that consuming language was one of the best ways to help him regain the words he had lost. Just like children who acquire language skills through listening to conversations, adults with brain injuries need to hear words in order to relearn them. Luckily for Travis I like to talk, but even I can’t talk all of the time (as much as I may try). Thankfully Hamilton did not heed Burr’s advice to “talk less,” and has stepped in to fill the occasional silent gap I leave.

The Hamilton soundtrack is packed full of words. At an average of 144 words per minute it is the wordiest show in musical theater history. Better still, the words are rich and challenging which means he’s consuming quantity and quality at the same time when he listens to the songs. Others may claim to have “the best words,” but Hamilton truly does (believe me).

There may not be a scientific way to measure the impact that listening to the music from this show has had on Travis, but I will say I heard him articulately alliterate the phrase “venerated Virginian veteran” long before he was able to name all of the days of the week and well before he could spell his own name. And the first time he confidently counted to ten after his third brain surgery, it was the ten dual commandments he was reciting.

I have always been an advocate for the arts–even dedicating my career to creating learning experiences in informal education spaces like museums–but if I ever needed convincing that the arts and humanities contribute far more to our society than cultural engagement, Travis would be my proof. Rebuilding his brain and cognitive function began with surgery and medicine, but it will continue and flourish because of literature, music and art.

Zebras, not horses.

By Julie

Brain tumors can be very tricky to diagnose. The most common symptoms suffered by those who will ultimately be diagnosed with a brain cancer vary from person to person in quantity and severity, and are almost always indicative of something other than a tumor. Even though Web MD seems to be convinced we all have cancer, most physicians think horses, not zebras, when they hear hoof beats. Brain tumors are definitely zebras.

Awareness campaigns for zebras can be very tricky. There is no test for brain tumors that you can self-administer in the shower, and if you run to your doctor every time you have a brain tumor symptom—which can include headaches, nausea, forgetfulness, communication challenges, balance issues, fatigue, etc.—you may be labeled a hypochondriac (and because your odds of getting a brain tumor are so slim the label, in all likelihood, would be deserved).

In Travis’ case his symptoms were all personality and communication related. There were no headaches, no seizures, no vision changes, there was just something about him that was different. I chalked it up to a mid-life crisis and he attributed it all to stress, but overtime those “differences” became more pronounced and we could no longer ignore that there was something truly wrong. Even then, we were both confident that we would find we were dealing with a horse, not a zebra.

Raising awareness for brain cancer is not about saving the masses, it’s about giving hope to the few unlucky ones who will be touched by this devastating diagnosis.

Approximately 17,000 adults and children will be lost to brain cancer in 2017. In comparison to those who are lost to more common types of cancer that we are made “aware” of through other campaigns, the number seems small. But these 17,000 will leave behind unfinished business and unaccomplished life goals that they put off thinking they had more time. They will leave behind jobs where they were making a positive change in the world. They will leave behind family members and friends who love them and will grieve because they know the world was a better place when their loved one was in it.

Brain cancer awareness efforts are almost entirely focused on raising funds to support research. Breakthroughs in research result in new treatments and therapies that can increase long term survival and improve quality of life for brain cancer patients. Don’t wait until the fight becomes personal; take steps today to aid in the battle against brain cancer.

How can I help?

  • Stay informed and become an advocate for neuroscience research. Contact your congressional representatives and tell them how important funding research through the National Institute of Heath and other bodies is to you and others. The Society of Neuroscience provides resources on how to stay politically active here: http://www.sfn.org/advocacy/advocacy-network
  • Donate or raise funds for organizations that conduct important brain cancer research including Dana-Farber. Join our walk team or make a contribution: www.jimmyfundwalk.org/2017/teamwolverine
  • Take control of your health, know your own body and become your own personal advocate. Find a medical professional who you trust and who does not dismiss your health concerns. Whether you ultimately find you are dealing with a horse or that you are afflicted with the more rare zebra diagnosis, your health matters and you should feel comfortable discussing and exploring any change to your body or mind that concerns you.

Travis Speaks

By Travis

I didn’t see this video until this week and I don’t remember recording it. I don’t remember much about that day, that week, or many of the things that happened in the months prior to this day, but my wife tells me this was the day I was told I had a brain tumor.

In this video I am explaining to one of my colleagues how to pick up the pieces that I left behind when I abruptly disappeared from my job. Apparently this was one of the activities that Julie and I used to pass the time during my first hospital stay along with coloring, walking laps around the nurses’ station, and watching cat videos on YouTube. Someone from work would ask a question via text and then Julie would record me answering the question, and collectively the group would decipher what it is I was trying to say.

Watching this video now is difficult. I don’t even recognize the person who is talking. I know it is me, but it doesn’t look or sound like me. It is uncomfortable for me to share this video but I am sharing it because I hope that people can learn something from it and from my experience. I hope that those who see this will make their health a priority and will trust the cues their body gives them when they notice that something has changed.

I’ve come a long way in the months since my diagnosis thanks to the work of a cognitive research team at the University of Rochester, and the various therapists I have worked with since my brain surgeries in November. I still have a long way to go but it is amazing to see how far I have come. There is no quick fix for the challenges I have faced and am facing. I hope that none of you are ever faced with something like this, but if you are just know that if you keep at it you can overcome anything.

Please support Team Wolverine

In Sickness & In Health

By: Julie

When your spouse is diagnosed with cancer you learn quickly what it means to be there “in sickness and in health.” Right now Travis‘ one and only job is beating cancer, and my job is to do everything in my power to help him succeed. His current treatment regimen is very complex so this means coordinating a calendar with an average of 3 appointments each day, managing medical bills, organizing pills and dispensing them at the right times, and arranging daily travel to and from Rochester. It’s a good thing that I love spreadsheets and whiteboards and label makers and three ring binders and… you get the point. 

Anything that makes these complex tasks a little easier is huge, and any assistance we receive with medical/travel bills and logistics is such a relief! In addition to our amazing family and friends who have cooked us meals, driven Travis to appointments, scooped our cats’ litter boxes, and sent us cash and gift cards that have helped pay for food and gas, we have been lucky to have an amazing resource provided by the American Cancer Society (ACS).

Several nights, including tonight, we have had the pleasure of staying at Hope Lodge in Rochester, free of charge. On days when the long drive is just too much to face, this place has offered us respite from the road and the relief from paying for a hotel room. So to anyone who has ever donated to the ACS or participated in an ACS event such as Relay for Life — this is your dollars and your hard work in action! Thank you! Please continue to support these worthy causes!

We’ve chosen to direct our fundraising efforts towards Dana Farber because of their focus on research and dedication to rare cancers like glioblastoma. It can take years and even decades for advances in brain cancer treatment to emerge because patients who are eligible for and healthy enough to participate in studies and trials are rare. Institutions like Dana Farber continue to push the envelope in developing new opportunities for patients like Travis.

Please support Team Wolverine

 

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Team Wolverine: An Origin Story

By Julie

On October 19, 2009, our lives changed forever when Travis asked me to be his wife. In the years since we’ve celebrated our “engageaversary” each year with great joy and had planned to do the same in 2016. But, instead of enjoying a nice sushi dinner we found ourselves in an emergency room as doctors worked to assess whether or not Travis was having a stroke.

For weeks something had not been right but neither of us could figure out exactly what was wrong, and on October 19th things were suddenly worse. Travis couldn’t find the words he wanted to say and his sentences turned into incoherent babble. When the doctor said “brain tumor,” neither of us even flinched. Everything made sense, but our lives would again be forever changed on October 19th.

From the moment he received the diagnosis of brain cancer, Travis has faced it with an incredible sense of humor. When the neurosurgeons rattled off the list of possible surgical complications that “less than 5% of patients” encounter, Travis asked “what percentage of patients come out of surgery with super powers?” Just like all the other complications they jokingly assured us that the sudden acquisition of super powers occurred in “less than 5% of patients.”

Travis was admitted to Strong Memorial Hospital for a tumor removal operation on November 2nd. We were pleasantly surprised to learn that they expected him to spend no more than 3-5 days as an inpatient. That seemed too good to be true for brain surgery, and for us it turned out to be. All those complications that “less than 5% of patients” get, Travis seemed to get all of them. An unexpected bleed, excessive swelling in his brain, seizures, low blood counts requiring multiple transfusions, and the list goes on. One surgery turned into three and 3-5 days as an inpatient turned into several weeks in the neuro ICU.

With each new complication his doctors prepared me for the worst, but Travis pulled through each one like it was nothing more than a speed bump. When he finally woke up, it happened to be in time to celebrate his birthday. His beard wasts_wolverine overgrown from nearly three weeks without a shave, and patchy from having chunks of hair pulled out by surgical tape. For his birthday he had one request from his nurse, Alex, who apparently also moonlighted as a barber – “I want to look like the Wolverine.”

It was more than just a new look. You see, despite the complications he had encountered, Travis had seemingly also acquired super powers – the super healing and super strength of the Wolverine—when he needed them most. While I had secretly been hoping for the power of flight or perhaps telekinesis, the hope that
comes with watching a cancer patient exhibit the power of super healing strength is beyond words.

Please support Team Wolverine.