Travis Sauerwald: Retirement/Memorial Details

Saturday – September 21st, 1:30pm 

A retirement service for Travis Sauerwald will be held at Cathedral of the Pines in Rindge, NH (just over an hour north of Boston). Travis always wanted to retire in New Hampshire and selected this location as the final resting place for his cremains.

There will be no formal program (per Travis’ wishes for “no minister who has never met me saying things he just learned about me,” and “no paper programs that people will just stuff in a drawer or toss in a garbage can.”).

Instead, we will come together and spend time remembering Travis’ life through stories, songs, poems (whatever remembrances everyone feels like sharing either prepared or off the cuff), before committing Travis’ ashes to the ground in a garden burial (another of his wishes — “no box, just me and the earth.”).

There are ample hiking trails surrounding the site so suits, dresses, and fancy shoes are not recommended for anyone who wishes to enjoy the beautiful New Hampshire landscape.

All are welcome. Lite refreshments to follow.

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Driving Directions to-Cathedral of the Pines

10 Hale Hill Road, Rindge, NH 03461

From Boston Area: Route 2 West to Concord rotary. Route 119 West through Littleton, Groton, Townsend, Ashby, and Ashburnham before crossing state line into Rindge, New Hampshire. Travel 5 miles to blinking yellow light intersection and turn right onto Cathedral Road. Approximately 1.5 miles to the Cathedral of the Pines entrance on the left.

From Areas North of Boston: Route 495 to Exit 31 for Route 119. Route 119 West through Littleton, Groton, Townsend, Ashby, and Ashburnham before crossing state line into Rindge, New Hampshire. Travel 5 miles to blinking yellow light intersection and turn right onto Cathedral Road. Approximately 1.5 miles to the Cathedral of the Pines entrance on the left.

From Eastern New Hampshire: Route 101 West to Peterborough. Left at stoplight intersection onto Route 202 toward Jaffrey. Travel 6 miles to stoplight intersection in Jaffrey. Turn right and prepare immediately for left turn at next stoplight intersection to remain on Route 202 toward Rindge. Travel 3.8 miles before turning left at stoplight intersection with Route 119. Travel 1.5 miles to the blinking yellow light intersection and turn left onto Cathedral Road. Approximately 1.5 miles to the Cathedral of the Pines entrance on the left.

From Central Massachusetts: Route 2 to Exit for Route 140(Ashburnham-Winchendon). Travel 9.2 miles to access Route 12 North (Winchendon-Keene, NH) at stoplight marking end of Route 140. Travel 1.2 miles to right turn at sign “To Route 202″(Rindge-Peterborough, NH). Travel 1.8 miles to the yellow light and straight ahead to access Route 202 North. Travel 5 miles before turning right at stoplight intersection with Route 119. Travel 1.5 miles to first blinking yellow light intersection and turn left onto Cathedral Road. Approximately 1.5 miles to the Cathedral of the Pines entrance on the left.

From Western Massachusetts, Connecticut, New York and Beyond: Interstate I-91 North to Exit 3 in Vermont to access Route 9 East toward Keene, NH. Travel 15.6 miles to Keene and straight ahead to fourth stoplight intersection where turn right onto Route 12. Take Route 12 South 12.3 miles through Swanzey, Troy, and Fitzwilliam to the yellow light intersection and turn left onto Route 119. Travel 5.4 miles on Route 119 East to stoplight intersection with Route 202. Continue through stoplight 1.5 miles to first blinking yellow light intersection where turn left onto Cathedral Road. Approximately 1.5 miles to the Cathedral of the Pines entrance on the left.

From Northern or Central Vermont: Interstate I-91 South to Exit 3 to access Route 9 East toward Keene, NH. Travel 15.6 miles to Keene and straight ahead to fourth stoplight intersection and turn right onto Route 12. Take Route 12 South 12.3 miles through Swanzey, Troy, and Fitzwilliam to the yellow light intersection where turn left onto Route 119. Travel 5.4 miles on Route 119 East to stoplight intersection with Route 202. Continue through stoplight 1.5 miles to first blinking yellow light intersection where turn left onto Cathedral Road. Approximately 1.5 miles to the Cathedral of the Pines.

A Giant Dose of Why.

Dear #TeamWolverine Supporters,

For the better part of three years you have supported our goal of funding#BrainCancerResearch. You held us up on the good days and the bad days. You laughed with us, cried with us, cheered our victories and pushed us over the finish line on days when we didn’t have the strength to get there on our own. For the 28 months of Travis’ brain cancer battle you did it for us, and in the 6 months that have passed since “we” became just me, you’ve shown time and time again that you’re still here.

In that time I’ve wondered why. What’s the point? Why keep going now that he’s gone? Why not just write brain cancer out of my life and walk away from the cause? We did a lot, maybe we did enough. But nothing I do is going to bring him back. There will be no cure for Travis.

This week I got a giant dose of WHY.

I’d like you to meet Ben, Christine, and Alex Knight. On April 26th of this year the Knight family received the same devastating diagnosis that rocked our world almost three years ago. They learned that Ben had a malignant brain tumor, a high grade glioma that carries with it a 12-14 month prognosis and kills over 90% of those diagnosed within 5 years. Ben, a research scientist himself, elected to participate in a clinical trial knowing that the current standard of care is largely ineffective in extending the life of#glioblastoma patients. The trial he is participating is extremely aggressive and combines two novel approaches in treating high grade glioma tumors – viral vaccines, and immunotherapy.

This trial is being led by Dr. Patrick Wen at Dana Farber Cancer Institute. Dr. Wen is the researcher that Travis hand selected to receive all funds raised by Team Wolverine during the 2017, 2018 & 2019#JimmyFundWalk. To date our team has raised over $60,000 to fund Dr. Wen’s research, and this funding is now helping to bring hope to the Knight family.

So this is WHY I keep going. This is WHY I’ll be lacing up for another 26.2 miles, again, on September 22nd. It’s WHY I keep posting, and asking and reminding the world of the value of this cause.

To those of you who have supported our team over the past 3 years with your feet, your words and your wallet, thank you. Your actions matter. Life saving treatment may not have made it in time for Travis, but the actions of those who came before him extended his life for 28 amazing months that we would not have had together otherwise. I can only hope that our efforts will similarly contribute to more life and more good days for the Knight family, and others like them.

This is why #TeamWolverineWalksOn.

Sincerely,
Julie Wilson

Donate or Join Team Wolverine:DanaFarber.JimmyFund.org/goto/TeamWolverine

Buy a Team Wolverine T-Shirt: www.customink.com/fundraising/wolverine2019

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L. Travis Sauerwald, November 11, 1973 – February 06, 2019

IMG_4600L. Travis Sauerwald, 45, passed away at home on February 6th with a cat on his lap, a dog on his feet, and his wife by his side. He died the way he lived: surrounded by love and completely devoid of personal space.

Travis is survived by his wife Julie Wilson of North Olmsted, OH, parents Lamont & Patricia Sauerwald of Wilmington, DE, sister Courtney Eaton (Nathan) of Bel Air, MD, in-laws Joseph and Judy Wilson of Kent, OH, brother-in-law Michael Wilson (Heather) of Corry, PA, sister-in-law Anne Wilson Yu (Kai) of Sharon, MA, and his beloved nieces and nephews Tyler, Natalie, Emily, Savannah and Samuel. He also leaves behind numerous aunts, uncles and cousins (acquired through birth and marriage), countless friends, and three four-legged children (Duncan, Parker & Roberta) who already greatly miss his physical presence in their lives.

He anxiously awaits a reunion with his grandparents, and hopes to be able to have dinner in heaven with John Wayne, Prince, and Clint Eastwood. Travis understood that the latter was very much alive at the time of his own death, but said he would just hold the reservation until such time as Mr. Eastwood could join the rest of the group.

Travis’ life was unfairly cut short by a disease for which there is no cure. At the time of his diagnosis, even with surgery and the most aggressive treatments available, he was expected to live only 12 to 14 months. In true Travis fashion, he stubbornly defied those odds and nearly doubled his post-diagnosis life expectancy fully living every moment of the 28 months he was blessed to have.

He used his time to try and make a difference for others who, like him, would face a brain cancer diagnosis in their lifetime. He completed two marathons and a handful of other charity races and, in doing so, led the members of #TeamWolverine to raise over $50,000 for brain cancer research programs across the country.

His desire to help others even while facing his own mortality came as no surprise to those who knew him best. Travis was an Eagle Scout who dedicated his life and career to protecting our natural resources. He was a wildland firefighter, a volunteer EMT and fireman, and the kind of person who would pull over on the side of the road to pick up a discarded bottle or can.

In the final weeks of life as he came to terms with the fact that his time on earth was indeed coming to an end, Travis expressed only two concerns: first, he wanted to know what would happen to his cats and, once he was assured by his wife (who is decidedly a dog person) that they would be loved and well taken care of, he then wanted to know what more he could do to help others. From this concern was born the idea for the Trails for Travis Foundation which will carry on his legacy.

If you wish to honor Travis, do so by making a conscious effort to preserve and protect the natural world. Reduce the number of single use paper and plastic products that you purchase and dispose of on a daily basis. Pick up trash that you find on nature trails and beaches. And be kind to creatures great and small.

If you’d like to remember him with flowers, Travis asked that you do so by planting them rather than cutting and sending them to his family – after all, his cats would probably just eat them. He requested that you do not remember him by releasing balloons, in an effort to protect turtles, birds and other unsuspecting wildlife who could be harmed by the remains of this well-meaning gesture. If you’d like to make a financial contribution to the soon-to-be established Trails for Travis Foundation, visit TrailsforTravis.org/foundation-support to learn more and help build his legacy.

Travis asked that his remains be cremated and reunited with the earth in a place that is surrounded by life, happiness and beauty, a process which has begun and will be completed as the weather warms. No immediate services will be held, but a celebration of Travis’ incredible life will take place later this year.

Bican Bros. Funeral Home: http://www.bicanbros.com/obituary/l-travis-sauerwald

Scanxiety

By Julie

Scanxiety. It’s a well known phenomenon (and made-up-word) among cancer patients and their caregivers that perfectly captures the feeling of anticipation that builds as you wait for the results of your scan. Scan + Anxiety = Scanxiety. Did the tumor grow? Did it shrink? Is it stable? Are there any new surprises hiding in there?

For the past 27 months we’ve been dealing with scanxiety at least every 8 weeks, and even more frequently when there was something that needed to be watched closely. What is particularly frustrating is that the concern and tension are not just things that pop up on the day of the scan but rather build almost from the moment you leave the previous MRI. You may get a few days of reprieve enjoying the bliss that comes with good news, but it’s not long before you start to stress about the next scan as you watch the date creep up on the calendar.

As each appointment approached we tried to come up with ways to reduce anxiety. We planned fun trips and activities to give ourselves something else to focus on, and above all else we promised ourselves that we’d never let the potential outcome of an MRI dictate our big choices. In the summer of 2017, for example, we bought Travis a new (to him) Jeep Wrangler just three days before he was due for his next MRI, and mere weeks after he’d been given the go ahead to begin driving again. Although he was only able to drive it for about 5 months, and it wouldn’t have taken much foresight to predict that a car purchase wasn’t the most fiscally responsible decision, I am so grateful for every day that he got to spend driving his dream car (and equally grateful that his dreams were so reasonably priced).

About two weeks ago we both started to look at the calendar and make plans for the next MRI. The tension and stress began to build as we reflected on the past 27 months and all of the times we’d sat in doctors offices waiting to find out what comes next. But as the scanxiety began to creep in, Travis made one of those big decisions that we promised we wouldn’t let be dictated by the outcome of an MRI. “I don’t want to do it” he said with complete and total conviction.

And so he is done with hospitals. He is done with drugs and needles and worrying about what comes next. And, there is nothing that any scan or test could say that will change his mind because the cancer does not get to dictate his big choices. The cancer does not get to tell him how he will live his life from here on out.

The word hospice often brings with it a lot of emotion and fear. In the last week as we’ve slowly conveyed Travis’ decision to begin home hospice care to family and friends, we can see the sadness in people’s faces and hear a change in their tone of voice as they process the news. But for Travis hospice is a victory. It means living life on his own terms and spending his days doing whatever he wants and whatever his body allows him to do. It means that today, on a day when we were scheduled to sit anxiously in a doctor’s office waiting to hear the results of another MRI, we are instead home watching movies, petting cats and eating cheeseburgers. There is nowhere else I’d rather be.

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Warfare Part 2: The Maverick and The Message

By Julie

Whenever there’s a high profile brain cancer diagnosis or death there’s a brief burst of energy where we hear about the horrors of the disease for a few weeks time before the news media quietly shelves their canned footage and quotes from the experts. This past week there was nary a news hour that went by without a mention of the word “glioblastoma” as the world bid farewell to Senator John McCain, who passed away after a battle with the disease that lasted just over a year.

The major media focus was, as it should have been, on McCain’s incredible life, his professional accomplishments, and his service to his country. Peppered into the conversation (along with a lot of obnoxious attempts to stoke the partisan political fires) were a handful of reports about the disease that took the Senator’s life. Many were noticeably reused from the 2017 diagnosis announcement with no attempt made to update using current statistics. Although, to be fair, there has been nothing much to update in the past several months, or the past several decades for that matter.

While overall cancer treatment options and outcomes have increased and improved, the number of options for treating glioblastoma and the associated survival statistics have remained stagnant. A few novel treatments have improved outcomes for a few patients, but these improvements are measured in mere months and for a variety of reasons the treatments are not available to all who need them.

The sad reality is that a person receiving a diagnosis of glioblastoma today can expect a similar prognosis to those who were diagnosed 5, 10 or even 20 years ago. It’s a year for the majority of patients, maybe eighteen months if you’re lucky, two years if you’re really lucky, and five if you have the right tumor, the right oncologist, the right caregivers, etc… (essentially, if you’re really, really, really lucky). There are a handful of long-term survivors who have lived ten years beyond their diagnosis, but they are so rare that many of us within the brain tumor community know them by name, or at least by number (as in, “that guy who has lived for 15 years with GBM!”).

In a previous post on this blog I likened the individual battle with brain cancer to to all out warfare. In trying to find an analogy for the brain cancer community’s collective fight with this disease, my mind immediately went to the 2007 movie 300, a fictionalized interpretation of the battle of Thermopylae based on a graphic novel from the 1990s. Since I am not a Greek historian I’ll have to rely on the historical fantasy version of the story to make my point.

In the film a group of Spartan soldiers faced a Persian army one hundred times their size. They are up against impossible odds and instinctively know what the outcome of the battle will be, but they fight anyways. If we shrink the number of those who will be diagnosed with glioblastoma this year down to a sample size of 300, and take the five year timeline down to three days, you can start to get an idea of just how swift and ruthless this disease can be.

The first fifty warriors are gone within mere hours of stepping onto the field of battle. The disease was too far progressed when it was discovered, there was a complication during surgery (it is brain surgery after all), or the tumor just didn’t respond to any of the available treatments. Their families barely had time to come to grips with the fact that they had brain cancer. They thought they would have time to make a few lasting memories but instead try to find comfort in knowing that their loved one didn’t suffer (while in reality they’d give anything for just one more day). Don’t let the swiftness with which these soldiers left the field of battle lead you to believe that they are anything less than true warriors. It had nothing to do with how hard they fought and everything to do with how the deck was stacked against them.

Over the course of the next two days more and more warriors fall. Most get knocked down two or three, or even four times, but they keep getting back up. They lose limbs and eyes and access to senses that were once sharp as pieces of their brains are taken over by the invading tumors. They fight relentlessly on that first day of the battle only to wake up the next and find themselves worse off than they were the day before. By the end of the second day 210 warriors have been cut down leaving just 90 brave souls standing.

A few of the remaining warriors have come through the first two days of the battle relatively unscathed having managed to avoid having any major wounds inflicted upon them. Others are limping, bleeding, barely able to stand and unsure how they’ll make it through another minute let alone another day. Some choose to retreat, often offering whatever weapons they have at their disposal to their comrades who may be better equipped to handle what may come next. Others charge ahead in spite of their wounds, knowing that in the next hour they will likely face their last stand. And as day three draws to a close just five warriors remain. Whether all five or only one walks away from the battle, they know that as soldiers they will most likely be called to return to the war some day.

In July of 2017, when John McCain was diagnosed with glioblastoma, the world responded with encouragement. Major political figures offered support in the form of tweets and public statements wishing him a speedy recovery and noting that it was McCain’s strength and warrior spirit that would ensure that he would pull through. Such statements, even the most beautiful and articulate ones, show just how tone deaf we are as a society to the plight of a brain cancer patient. Our mothers, daughters and sisters are surviving breast cancer in record numbers. Our children are finally beginning to beat leukemia and many other childhood cancers. And with preventative care and campaigns against smoking and other carcinogenic substances we have prevented an untold number of cancers before they even begin. We have gained so much hope through our victories in so many cancer battles that we’ve become somewhat desensitized to the plight of those who are given a diagnosis that is largely hopeless.

Glioblastoma patients and their families need hope. For twenty two months I have held onto any tiny little shred of hope I can find as I watch my husband fight and fall and get back up again. As the treatment options available to fight back the beast continue to dwindle and fade, so does that hope. And this week, with the loss of a warrior as fierce as John McCain, our hope has been struck another blow as we are left to wonder how we can defeat a tumor that took out a man who previously survived for five years in a tiger cage.

If we’re lucky, the the conversation about the importance of funding brain cancer research may stick around for a few weeks. It’s more likely, however, that the word glioblastoma will once again disappear from the daily news cycle in a matter of days.  Other, even less common words like astrocytoma, ogliodenroglioma, and diffuse intrinsic pontine glioma (DIPG) may never even make it to the major news networks, despite the vast networks of people touched by friends, loved ones, colleagues, or family members fighting these cancers. We have to seize our moment while its here and raise awareness and research funds while we have the spotlight.

As we bid farewell to John McCain and remember his service to this country as a sailor and senator, let us also remember the beast that ultimately claimed his life. Let’s honor him, those who have gone before, and those who are still fighting by recognizing the need for further research, finding better treatments, and providing real hope that there can be life after brain cancer.

Funds raised by Team Wolverine for the 2018 Jimmy Fund Marathon Walk support the neuro-oncology team at the Dana Faber Cancer Institute. Please donate today.

 

Pancake Breakfast

image1(1)By Julie
Over the past decade Travis and I have lived in three different small towns in three different regions of upstate New York. While each town had its own unique charming features, they all had one important thing in common (aside from each just having a single traffic light). They all had amazing, volunteer-fire-department-hosted pancake breakfasts.
Now don’t get me wrong, we love pancake breakfasts put on by high school booster clubs, museums, historical societies, or by the local church ladies, but, there’s just something about the volunteer fire department breakfast that is truly special. Just think about it. These are people who spend their free time volunteering to save your life, and their extra free time serving you breakfast to raise funds so that they can continue volunteering to save your life! That’s something pretty amazing. So maybe that doesn’t explain why the food is so good, but all I can say for sure is that having spent a decade attending pancake breakfast fundraisers on a regular basis, the ones we seem to go back to regularly have been held by volunteer fire departments.
I spent 10 weeks living in a small town upstate New York in 2006 while completing a museum internship. In hindsight that time was a bit of an extended scouting trip that paved the way for the next decade of my life as I’d relocate to that same town to work for that same museum just three years later, with a naively excited fiancee in tow. Together we navigated the ups and downs of small town living – planning half-day shopping trips because the closest Target was 45 minutes away, attending bizarre local festivals, spending 3-5 days snowed in with nothing to entertain you but each other, and of course going to firehouse pancake breakfasts. Both raised as suburbanites we had no idea how different this world was, and how much we would fall in love with the small town life experience
This week we’ll set off on a new adventure, a departure from small town living and a return to suburbia. The twists and turns of life are now leading us away from the state we’ve come to call home (although Travis still refuses to call himself a New Yorker), and thus today was our last firehouse pancake breakfast as residents of New York. No longer will we live in this strange but magical place where your barber can cut your hair in the morning, show up at your house in an ambulance when you have a seizure in the evening, and then serve you breakfast the next day.
We’ll find the charm in suburban life, I’m sure, but for now it’s a bitter sweet day. At least for me it’s a return to a home that I know I love, and I can only hope my naively excited husband loves it too. Cleveland here we come.

I Quit.

By Julie

Professional success has always been among my top priorities. As a teenager I took my part-time job way too seriously. In college, sure I had fun, but I always had at least one internship in addition to multiple paying jobs, and I worked that same part time job that I had as a teenager every time I went home for a weekend or holiday.

With careful planning, a ton of hard work, a supportive family, and a little bit of luck, I’ve managed to build a pretty successful career (yes, even with degrees in subject areas many would consider to be as useful as underwater basket weaving). I’ve averaged 3-5 years in each of my professional positions post-college, climbed the management ladder (going from supervisor to manager to director), and nearly doubled my salary with each job change. In the same period of time my husband has found similar success returning to school, attending every relevant training he could find, and finally landing a federal position in the field he was born to work in. We supported each other through it all making moves that may have seemed crazy to some, but that allowed each of us to pursue our own goals.

As a society our professional identities are so important to us. For men “what do you do” is easily the number one small talk conversation starter. As a woman, while I’ve increasingly found as I’ve gotten older that questions about my body’s ability to make other humans come first, those questions are generally soon followed by ones about my career. And Travis and I have had fascinating jobs that allow us to tell great stories at parties about forest fires, shoot-outs, drug smuggling bus drivers, and major league baseball players.

This connection to our professional identities is one of the things that has made the past 19 months so difficult. Travis has been completely unable to work for the past 8 months, and unable to do the parts of his job that he loves the most since the day of his diagnosis. I’ve been ready to move on and take my next big professional leap for about a year now, but my mind is too cluttered to take on anything new and I feel paralyzed by fear of the unknown when I look at job postings that once would have excited me.

Lately, it’s been pretty awkward when people ask us what we do (cancer, we do cancer), and today I’m taking steps to make it more awkward. Today, is my last day at my job and I have no major announcements for you about the next step in my career. That’s right, I don’t have a back-up plan, and it feels amazing (and also terrifying and nauseating and here comes the crippling fear/anxiety… maybe they’ll let me take back my resignation letter, Dear God what have I done!).

Now I’m sure you have questions so please, allow me to sarcastically answer the questions you may or may not have asked (depending on how polite you are) if we were having this conversation in person.

Did they force you out? They can’t do that, you know!

First, yes they can. But no, they didn’t. My employer has been incredibly supportive over the past two years. I made the decision to leave and no one pushed me away. My job involves a high level of creativity that I just don’t have the ability to provide at this time. I continued to work until I no longer felt like I was the right fit for the job that needs to be done.

Are you sure this is the best decision?

Nope, but I’m never sure of much of anything these days so that’s just par for the course. The number one thing I’ve learned in the past 19 months is not to over plan. Now this may be a classic case of under planning, but I’ve made peace with that and I’m moving on. Next question.

Aren’t you scared that you won’t be able to restart your career once you’ve taken a sabbatical? I read an article that said…

Ummm… wow, Carol. I hadn’t really thought about that. Could you send me that article so that I can rethink this decision that I didn’t put any forethought into whatsoever?

What about health insurance?

We are incredibly blessed that our particular circumstances don’t require me to be employed for us to retain our health insurance. I don’t feel the need to explain my circumstances to you any further, but if you are truly concerned about this issue I encourage you to vote for political candidates who make fixing the flaws in our employer-based health care system a top priority. I’m one of the lucky ones but insecurity over access to healthcare in this country is a big deal, and you are right to be concerned about your fellow citizens.

What are you going to do for money?

Well, that’s a pretty personal question. We don’t have it all planned out, but I do expect to work some when I can. I’ve been pretty successful at picking up short term contracts for small non-profits, and hopefully I’ll continue to have success in that area. We have some savings and some other income streams outside of my job, I think we’ll be able to get by.

But, is that sustainable? I mean, you need money, don’t you?

Wow, you are persistent. I don’t know what else to tell you. I guess, worst case scenario, I’ll call up my favorite high school science teacher and see if he’s open to starting a totally legal business of some kind. You game, Mr. Sweeney?

What are you going to… do?

Believe it or not there’s a whole world out there that doesn’t involve working 80 hours a week, answering emails at 4:00am, and stressing out over project deadlines. I’m looking forward to more long walks, more dinners at home, and maybe reading a book for fun. Oh, and then there’s the whole cancer thing, that takes up a LOT of time.

At least you don’t have children.

By Julie

It was less than 24 hours after being told that my husband had a brain tumor that someone first said those words to me. I remember it vividly. I was standing outside of Travis’ tiny ER room, a roughly 12×12 prison cell that he was sharing with a lady who was having some severe intestinal difficulty, trying to find some breathable air. A doctor came by and asked me if anyone had spoken to me in a while. I said “no,” and so he proceeded to run through the details of the death sentence that Travis was facing once again, this time suggesting that it might be best to just take him home to die.

A woman who had been walking by stopped and listened intently to every word he was saying. She gasped and covered her mouth with her left hand while shifting an unlit cigarette into her right. As the doctor walked away she wrapped her arms around me and started crying. She smelled like a mix of stale coffee, alcohol, cigarette smoke, and hairspray. She was tethered to an IV pole and had failed to fully close her gown following a trip to the bathroom. While she attempted to comfort me, I gagged a little from the smell and wondered if she’d washed her hands.

She asked me the two questions that I get most often from people who meet Travis and me as a couple for the first time – How long have you been together? And Do you have any children? The second question is an obvious follow-up to hearing that we’ve been together for 10 years, married for 5. I mean, I assumed we’d have kids by now so why shouldn’t everyone else in society?

With cancer entering the conversation this line of questioning has changed dramatically. I used to respond to this question by saying something like “not yet,” or “we’d like to,” or even just “someday,” with the goal being to signal that this was something we wanted but that maybe you shouldn’t dig too deeply into our personal struggles with conceiving. Now, with so much uncertainty hanging over our future, I often pause and hesitate when faced with the dreaded kid question.

The smelly drunk lady in the ER was just the first of many people to take this line of questioning down an incredibly painful path. She talked about some guy she knew who had cancer, her own kids whom she sometimes wished she’d never had, and about how she only got to party on weekends when their dad “had to take them.” When she finally got the hint, that I didn’t feel much like talking, she gave me one last hug and said those fateful words “well, at least you don’t have children,” as she walked away to sleep it off in her cell some 15 feet away. I’ve heard those same words, or some variation, so many times in the past 18 months that I’ve lost count.

What she and others don’t know is that right around the time we were in the hospital receiving the devastating news of Travis’ cancer, we were supposed to be there for another, happier reason. After years of struggling to conceive, we were supposed to be welcoming the baby that I miscarried earlier that year.

I would be lying if I said that I myself hadn’t thought about how much more challenging the past 18 months would have been if there had been an infant in the mix. The words “at least I don’t have a baby to deal with” have even entered my own mind from time to time. But the comfort of knowing that I am not responsible for a tiny human life at a time when there are so many other things on my plate, is always quickly replaced by the crippling devastation that comes with knowing that we lost someone that we so desperately wanted to be a part of our lives.

But I won’t use this forum to lecture anyone on the finer points of comforting those who are grieving a loss. Newsflash, we’re all really bad at it. Even if you think you’re good at it, I promise you’re not, and that doesn’t make you a bad person. You meant well when you told your friend that God would never give them more than they could handle, that their loved one was in a better place, or that you could never be as strong as they are.

This is national infertility awareness week and so I hope this post raises some awareness of the struggles that so many couples face while they are trying to grow their family. I don’t want you to stop posting your baby shower photos, although I’ll admit that sometimes they may make me feel sad. I don’t even mind that you made that April fools pregnancy joke, it wasn’t funny because it’s not very original, but it didn’t hurt me. I don’t have a problem with you complaining about your kids being the terrible little monsters that I know they can be, and so I won’t lecture you about appreciating the fact that you were able to create life.

So why raise awareness of infertility, or anything else for that matter? Well, I think we’re just better people when we take the time to consider the daily struggles of those around us. That’s it, just be considerate. Do more listening than speaking if you don’t have something constructive to add to a particular conversation. And know that when you do say something ridiculous in an effort to comfort a person who is struggling or grieving, we will talk about you and make jokes about your attempt to console us in an effort to help us get through the day (so, thank you for that). And at whatever point you are struggling and I say something stupid and inconsiderate to you, I hope you can forgive me and find a way to laugh about it.

Dear Hugh Jackman: Please don’t jump off a bridge.

By Julie

Dear Hugh Jackman,

Please don’t jump off of a bridge. That probably seems like a strange request, so allow me to explain.

A little over a year ago my husband underwent three brain surgeries (one planned, and two to repair complications that arose from the first). His doctors had prepared us for the worst, I mean it was actually brain surgery after all so we knew that when (or even if) he finally woke up, he may not be entirely himself. But nothing could have prepared me for the remarkable changes he underwent. When he finally woke up he was still Travis, but in his mind he had somehow become the Wolverine.

Now he wasn’t exactly articulating his thoughts very clearly, so when he talked about the metal that had been added to his system and explained that was why his nurses couldn’t draw his blood, and when he told me he didn’t need any more medications because his body was able to heal on its own, I struggled to understand what was going on. When he started showing his claws to one doctor that he was not particularly fond of every time that guy entered the room, I started to get it a little bit more but I just laughed it off as part of the healing process. I have called what he was experiencing a delusion, but to him it was incredibly real.

In the months that followed he underwent radiation and chemotherapy in an effort to kill the remaining bits of brain tumor that weren’t able to be removed during surgery. He continued to channel his inner-wolverine and became a champion for the cause of funding brain cancer research. In 2017, he raised over $25,000 for various research programs and, while still in active treatment for a grade 4 tumor, walked the full 26.2 miles of the Boston Marathon course as part of the annual Jimmy Fund Walk. With such a display of superhuman strength I had to wonder if I was too quick to label his transformation as a delusion.

I am writing this open letter to you for two reasons. The first is to thank you for bringing the Wolverine to life on screen for so many years. What may seem like a silly comic book character to some, has been a literal lifesaver for my husband as he’s drawn strength from the self-healing soldier you portrayed so well. The second, as I mentioned at the beginning of this letter, is to ask you not to jump off a bridge.

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You see, last fall Travis got his second primary cancer diagnosis in just a year’s time. It wasn’t quite the life-altering experience he had undergone just a year prior, but it was a cancer diagnosis nonetheless. We had ignored a spot below his eye for years until he saw a post-operative picture of you online and he said “maybe we should get that thing on my face checked out.” After a biopsy we received the news that Travis indeed had basal cell carcinoma which, as you know, is a very common and treatable form of skin cancer. He had it removed this past December, and we’re happy to at least be able to say that he’s now skin cancer free.

So back to that bridge. I fear that Travis has finally taken his emulation of you and the Wolverine too far. It’s the only rational explanation for this additional cancer diagnosis that I can come up with. How else do you explain a second primary cancer diagnosis, one that’s completely unrelated to the brain cancer he is battling, in just a year’s time? I mean, I suppose one could claim that the skin cancer might have something to do with his failure to ever wear sunscreen during a two-decades-long career working outdoors… but just in case it’s the former and not the latter, I’ll ask again, please don’t jump off a bridge because I fear Travis would follow suit.

Now that we’ve gotten that out of the way, please let me return to thanking you. Thank you for sharing your experience with skin cancer publicly, reminding others to use preventative measures and get regular checkups from a dermatologist. And, thank you for being an inspiration to my husband during the most difficult challenges he has ever faced. Perhaps you’ll be as inspired by Travis as he has been by you and you’ll join us for some or all of the 26.2 mile course?

Registration opens soon for the 2018 Jimmy Fund Walk. Team Wolverine will be out there again, raising awareness and money for cancer research and walking along side thousands of others who will be championing causes like yours and like ours.

 

Warfare

WolverineWarfareBy Julie

I have used a lot of metaphors to explain the various treatment strategies that have been applied in Travis’ battle against brain cancer. Sports metaphors have been my go-to because they come easy to me, but I’ve also referenced gardening, computers, sewing and dancing at various points to explain pieces and parts of the process. Now looking at the past 15 months, I’ve realized there is no comparison that can capture the whole of what has transpired and what is transpiring now besides all-out warfare.

We’ve all heard the terms “fight” and “battle” used to describe heroic efforts by cancer patients and their doctors in taking on this terrible disease, but I never understood the accuracy of those terms until I, myself, was drafted to serve on the front lines of one of these wars. If I had the budget for a big Hollywood production, I would get Tom Hanks on the phone right away to begin the scripting process (and, of course, have my casting director call Hugh Jackman). For now I hope my words will be enough to help you get the picture of how we got to where we are.

The first phase of the assault on Travis’ tumor was the surgical phase. Approximately 2 weeks passed between his original diagnosis and the day of the surgical assault, during which time extensive preparations were made for the battle ahead. A concerted effort was made to get to know the enemy, as well as the native population, so that as little damage as possible could be afflicted to the regions of Travis’ brain that were under attack through no fault of their own.

While the initial attack appeared successful, with more than 70% of the original insurgents destroyed or captured, the assault lasted a full 15 days longer than was originally planned. This dramatically depleted our resources as the surgical team was forced to return twice to the original front and surrender was nearly signaled. But the General — wait, maybe he’d prefer Admiral? He’s always been more of a navy guy… never mind that’s not important.  Anyways, Travis rallied.

The second phase of the assault was radiation. While I initially pictured some sort of precision laser beam attacking each remaining cancer cell (I genuinely had a vision of the old side scrolling space invaders game in my head), I quickly learned that that there was a lot more involved in the field of radiation oncology (and it’s way cooler than space invaders). Ultimately what I came to understand is that radiation is about cutting off the supply lines that feed the tumor. So we’ve completed this massive surgical assault and eliminated a vast majority of the threat. But there are still pockets of enemy invaders hiding within the region. Radiation is used to isolate and starve them by cutting off the blood vessels on which they’re feeding. Again, we want to avoid harming the native population but some collateral damage is inevitable.

So your initial assault was a success and you believe you’ve managed to isolate the enemy — but what if just a few insurgents managed to escape from the capital? The region is already pretty unstable, so just to be sure let’s use the intelligence we’ve gathered to weed out any remaining cells that may have escaped our grasp. During the surgical assault phase, we captured a lot of insurgents and learned a great deal about the enemy and how to defeat it and so a combination of chemotherapy drugs are selected, including some that have never been used in battle before, to go after anyone who may have tried to sneak out across the border.

In our battle, phase three at first seemed successful but we’ve discovered time and again that this particular enemy is smart, unrelenting, and seemingly determined to defeat the strongest man I have ever met. Our greatest fears were realized when intelligence gathered in December revealed that a few insurgents had survived, regrouped, and began to attack on an entirely new front. They are small but mighty, and just as we’ve learned a lot about them… they’ve learned a lot about us. They went after a major communications outpost which has limits the arsenal of tools at our disposal, attacked before we had been completely able to recover, and have used tactics that would most certainly not be sanctioned under the Geneva Convention.

So we’ve gathered our reserves and engaged the enemy on this new front. We have recruited the best team available and we are hitting this thing with all that we have. Most importantly, we have chosen to enter this battle with a champion who will certainly do us proud.

Though he may be wounded, he is far from finished. In the words of General Patton: “Wars might be fought with weapons, but they are won by men. It is the spirit of the man who leads that gains the victory.”