Tough Conversations

By Julie

While on our honeymoon we went to a steakhouse where Travis promptly ordered a 20+ OZ ribeye (rare, of course). I couldn’t help but laugh when the still-mooing slab of beef (which was easily the size of the plate on which it was delivered) arrived at our table. “You know,” I quipped “my first husband Travis used to eat steaks like that all of the time!” I can’t count the number of times I’ve reused that gem in one form or another over the past 5 years. Joking about your husband’s untimely death is pretty funny, until it’s not.

When your life is normal these types of jokes are normal—at least they were for us so I assume they’re normal for everyone. We’ve made jokes and had casual discussions about the type of funeral we’d want, who we’d date if the other one wasn’t around, and even how we’d go about killing each other if, you know, we were going to do that. (Ok, so that last one doesn’t exactly sound normal so I’ll just clarify by saying that conversation came after a day of binging episodes of Forensic Files and judging others for how bad they were at covering up their crimes.)

Our lives ceased being normal when cancer became a daily part of our conversations. At first I adapted by not making jokes, which is unbelievably hard for someone who comes from a long line of people who use inappropriate humor as a coping mechanism. But, reverting to living and talking as if nothing had changed didn’t feel quite right either.

At some point we had to get on with living our lives in the context of a new normal, and that includes returning to conversations that were once normal, and having tough conversations that often become uncomfortable. Ultimately, we seem to have struck a balance among all of the feelings of discomfort and awkward laughter, and the need to actually talk about the giant elephant/zebra in the room (both for sanity and practicality sake).

In the past 6 months I have written down the details of a lot of the conversations we’ve had for posterity (and because Travis initially suffered some short term memory loss so I needed proof/plausible deniability in some cases). I’ve summarized some of our more interesting/morbib/painful/enjoyable conversations below, all of which included a combination of laughter and tears.

Why am I sharing these conversations? Because, while it’s human nature to tip toe around the hard stuff, these are important topics to cover whether or not you’re facing a serious illness. When we’ve brought these topics up with family members and friends we generally get responses like “don’t talk like that, you have to stay positive.” And while we’re focused primarily on a positive outcome, the alternative cannot be ignored. People think that when you have cancer you just sit around having cancer. That may be true for a little while but then you have to figure out how to make life work around it. We can’t go very long without it being a part of our conversations, but we also can’t let those conversations consume us with darkness.

On Final Wishes/Burial

Travis: I know we’ve joked about it before but I really think the eco-urn is the way to go.

Julie: Oh good, way cheaper than a casket.

Travis: I just like the idea of being a tree. There’s something really…

Julie: profound about it…

Travis: Yes. That word. Do you think you wear clothes to be cremated?

Julie: I don’t know. If you do, what would you want to wear?

Travis: Maybe my kilt.

Julie: I guess… Seems like a waste of an awful lot of good fabric, though. I could make curtains…

On Moving On

Travis: Do you think you’ll get married again when… if I’m gone?

Julie: I don’t know. I can’t honestly say I haven’t thought about it a little, but all thinking about it does is tell me that I’m definitely not ready to think about it.

Travis: I guess. I’d want you to be happy though. That could be a long time to be alone.

Julie: Is it weird for you to think about?

Travis: I mean, I’ll be dead so… but I don’t really know what happens to me… I mean, I do kind of wonder if I could see you… moving on.

Julie: That’s a weird and unsettling thought.

Travis: And what about when you die? Are we all together? Double Husbands?

Julie: This is getting a little too deep for me. It makes my brain hurt.

Travis: Maybe you have a tumor.

Julie: You think everyone has a tumor.

Travis: But seriously though, I do want you to be happy.

Julie: Ok, then seriously, I would leave you right now for Adam Levine.

Travis: I’d leave you for Adam Levine.

Julie: Well this is a new development…

Travis: Not like, to have a relationship, I just think he’d be cool to hang out with.

Julie: Couldn’t we all hang out together?

Travis: No one likes a third wheel, Julie…

On Death and Suicide

Travis: If things go south and we found out that I wasn’t going to make it through this, I don’t think I could just wait around for death, but I also don’t think I could kill myself.

Julie: Well I’m not gonna kill you.

Travis: I wouldn’t ask you to do that.

Julie: I mean, I could, but I wouldn’t want to risk jeopardizing the insurance claim.

Travis: Fair.

Julie: We can talk to someone about what it would be like when… if… ummm… we could talk to someone now if you want to… or then… if there’s a then.

Travis: I guess. But I was actually thinking I’d like to go out like The Shootist and I’m not sure that’s something that they could help me with. I’m also not sure if I have enough enemies that would consider going toe to toe for the chance to take me out. Also, we’d have to time it perfectly so I still had a fair chance in the fight, you know, before the tumor takes more of my tactical skills away.

Julie: Wow, you’ve really thought a lot about this, haven’t you?

Travis: I guess… I think about dying a lot and this is one of the least depressing ways to think about it. No one wants to waste away in a bed. I want to go down fighting.

Julie: Well, I guess the good news is that with the current political climate in America I’d say there’s at least a 75% you’ll be able to volunteer as tribute for the world’s first hunger games…



The Make Change Challenge

May is Brain Cancer Awareness Month – or Brain Cancer Action Month, if you prefer. Either way, we’d like to ask you to take action and help us raise awareness this month by creating a little change – or more accurately, collecting a little change.

A little change can go a long way – and that’s more than just a saying – which is why we’re launching the “Make Change Challenge” to raise money throughout the month of May for brain cancer charities. Small amounts add up quickly and can make a big difference.

Please join us! Here’s how to participate.

How to Join the Make Change Challenge:

Step 1: Get out your craft supplies and create a Make Change Challenge container. It can be any shape or size, any color, any material.

  • Also, we would love to see what you create — share a picture of your container on social media with #MakeChangeChallenge and #WalkingforTravis. Find change in an interesting place? Post that, too!

Step 2: Find a prominent place to display your container(s).

Step 3: Collect and save change throughout the month of May.

Step 4: Donate your collected change to a program that supports brain cancer research and patient programs.

A few suggestions collecting change:

  • When making a cash purchase, save the leftover coins to add to your change jar;
  • If you live in a bottle deposit state, cash in containers for nickels & dimes and add the change to your jar – collect containers from neighbors to trade in for change.
  • Pick up discarded pennies (note: maybe best to carry some hand sanitizer in case you encounter some sticky money).
  • Do a little spring-cleaning around your house; you may be amazed how much change you’ll find in your couch cushions or under your washer or dryer.

 Are you competitive? Suggest a friendly competition among your family, friends and coworkers to see who can collect the most change in the month of May. You may even consider designating a prize for the person who does collect the most.

 At the end of the month, contribute the change you collect to an organization that supports brain cancer research and programs. Some of our favorites include:


Awareness in Prime Time

By: Julie

photo posted on post-gazette.comIn March of 2016 the CBS crime drama NCIS aired an episode entitled Reasonable Doubts. We’re cord cutters (aka, folks who have given up cable) so we didn’t watch this episode until it recently appeared on Netflix, but here’s the gist of what happened: there was some sort of crime that involved something that happened to someone connected to the Navy. The main character, Agent Gibbs, had a gut feeling about what actually happened, but didn’t reveal what he already knew to the team who worked tirelessly to sort it all out, and in the end they solved the case. It was riveting as usual.

What was more interesting to me, however, was the sub-plot. The father of another character meets a homeless woman who is suffering from some sort of mental illness and he becomes obsessed with finding her the care she needs. In the end it turns out that she had once lived a normal and productive life with a loving family, but she slowly slipped into total madness until she was unable to remember her full name and could no longer function in the world. The cause, revealed in the closing moments of the show, was a brain tumor (inoperable and too far progressed for any effective treatment).

Travis, the Agent Gibbs of our family, suspected a brain tumor from the moment the character was introduced. To be fair, however, these days anytime we watch a show where someone has gone a little crazy, Travis generally diagnoses them with a brain tumor.

It was nice to see a spotlight placed on brain cancer in such a prominent platform, and particularly nice to see symptoms other than headaches and seizures portrayed as part of the equation. Here was a woman who was probably just a little out of sorts at first, but over the years she plunged into total madness from the thing that was growing in her head. Perhaps if she’d been aware that something so horrible could have been plaguing her, or if she had a loving friend, family member or partner who knew intuitively that her behavior was so dramatically different and that one logical explanation was that something was seriously wrong, this poor fictional woman could have been diagnosed before it was too late.

Awareness. That’s what we’re fighting for right now. Sure, incorporating brain cancer into the subplot of a prime time show was a great opportunity to raise awareness, despite the fact that when the diagnosis finally came the doctor delivering the news to the father character totally blew his big moment by horribly mispronouncing glioblastoma (seriously, watch it, – season 13, episode 16, time stamp 39:51). Here’s the thing — not only did the fictional characters miss signs and symptoms, ultimately no one on the set was aware enough to catch the mistake either.

As I’ve written previously, raising awareness for brain tumors can be tricky because brain tumors are zebras. An awareness campaign encouraging people to pursue treatments for symptoms that are most often benign would probably only make things difficult for doctors and patients alike. Further, proper pronunciation is hardly a solid platform to build an awareness campaign around. For one, it is a tough word to pronounce so mad props to the actor, Matt Champagne (who is credited by IMBD as “Dr. Glioblastoma”) for a solid effort. Also, I’ve spent a lifetime correcting pronunciation and grammar and trust me: no one likes it, so that campaign would almost certainly fail.

For months we have been trying to come up with big ways to raise awareness and funds for brain cancer. The more we talk with others about Travis’ diagnosis the more we see how great the need is for awareness. Travis’ decision to share his story was predicated on this need, and it fuels my new propensity to write like I’m running out of time (and yes, that’s another Hamilton reference). As we look ahead to May, which is brain cancer awareness month, we decided to stop focusing on big, and instead we’re going to try to do something small. Think pennies, small.

Stay tuned for another blog post that will go up later this week to learn more about Team Wolverine’s Make Change Challenge.

“It’s easy to ask if you believe in the thing you’re asking for.”

I’ve worked in non-profit organizations for most of my career, largely in the areas of education and youth programming. While it has never been my primary job, fundraising has always been a part of my work in one way or another. For a long time it made me uncomfortable because I hated the idea of asking people for money. I remember asking the development director at one of the museums I worked for how he did it day in and day out and his response really stuck with me. “It’s easy to ask if you believe in the thing you’re asking for.”

At times this mantra has made my job easier and at times it has made it more difficult. When I believe deeply in the value of the project or a cause I’m raising funds for, it’s now incredibly easy for me to conceptualize the details of a grant proposal, create an event, or organize a campaign. Likewise, when I don’t truly buy into an organization’s mission, I find myself uncomfortable, uninspired and with the same disdain for fundraising activities that I had early in my career.

It should come as no surprise to readers of this blog that I find myself especially passionate about one particular cause at this point in my life. The most important person in my entire world is battling a rare and aggressive cancer and while I’ve felt compelled to support many other causes in my life, I have never felt so personally attacked by something in the way I do by Glioblastoma. I feel like Liam Neeson’s character in Taken except I don’t have the “particular set of skills” needed to find and kill this tumor.

The people who do have those skills are doing an amazing job. There are entire teams of professionals that are working tirelessly to attack the tumor surgically and medically without destroying the parts of Travis’ brain that make him who he is. There are therapists who are working to restore the physical abilities and functions that have been effected by the tumor, and researchers who are studying Travis’ progress to figure out what more can be done to help him and others like him. Travis himself is fighting back against the tumor every day completing tasks that restore his cognitive functions, working out even when his body is exhausted from chemotherapy, and generally pushing himself to the edge of what his body can tolerate allowing the medical interventions to do what they need to do.

And then there’s me. Sure, I’m helping. I drive Travis to and from his appointments. I make schedules and calendars and meals that are “chemo friendly.” I make sure the cats are fed, the garbage is taken out and there are no strange smells in the kitchen that will make Travis feel worse than he already does. I deliver the poison prescribed to him on the schedule provided by his doctors and hold back tears as I watch him struggle to force it down. I politely suggest activities that might make him feel better, and then more forcefully push him to do said activities when he declines. I’m busy all the time but it never feels like enough. I want desperately to do more to help him and help others like him. I’ve never been so needed and felt so useless all at the same time.

So I look for ways to be useful in any way I can. The Jimmy Fund Marathon Walk gives me something positive on which to focus my attention on days when I feel completely useless. Those are the days when I take longer walks to get my body ready for the 26.2 mile trek, and the days my family and friends see an increased number of social media posts and fundraising requests show up in their news feeds. They may tire of seeing my posts (often cleverly disguised with cat photos), but I feel no hesitation sending them out into the world because this is a cause that I believe in.


“No one asked for your Peanut M&Ms”

By Julie

We’ve all been there. You type out a text message or an email and then hit send only to realize a moment too late that your words have been changed by the evil autocorrect function on your device. Most of the time the results are harmless, or better yet hilarious, but occasionally they are terrifying and leave you in a cold sweat while you await a response from the person with whom you are corresponding.

Autocorrect once made me call my boss “Satan” in a group email with at least a dozen of my colleagues CC’d (his name is Stan). Worse yet, I once accidentally called my adorable nephew a horrible racial slur while exchanging text messages with my sister. Luckily, in both cases, all of the involved victimized parties were very understanding and had a sense of humor about the situation. That’s the thing about modern technology – we have all been there, so we all get it.

But imagine trying to function in society with your brain constantly auto-correcting the words you are trying to say, or the words others are saying to you. That is life with aphasia – a communication disorder that impairs a person’s ability to process language. In the weeks and months leading up to his cancer diagnosis Travis began to suffer from both expressive and receptive aphasia. With numerous speech pathologists in my family I had a vague familiarity with the term, but it still never occurred to me to label his occasional forgetfulness, word mix-ups, or inability to understand what I was saying to him, with any particular medical terminology.

The aphasia came on slowly over the course of about two months, and then suddenly over about 72 hours struck in a way that forced us to pursue immediate medical attention. Cows weren’t cows, they were fish. People were squirrels. All inanimate objects were chairs. In hindsight, it was so clear that something was wrong, then came the brain tumor diagnosis.

Post surgeries, Travis’ speech has begun to improve. He has worked tirelessly with researchers and his speech pathologist over the past five months to regain a lot of the functions he initially lost. Where there are still gaps I use context clues, logical semantics and my extensive knowledge of the man I’ve lived with for the better part of a decade.

It’s easy to adapt at home with many of his auto-corrected phrases even becoming a humorous part of our everyday conversations. Where Travis used to regularly quip, “no one asked for your opinion” when I would give him unsolicited advice, he now says “no one asked for your peanut M&Ms,” not because he can’t say it correctly but because it was hilarious the first time he said it. Still, speaking in public when you’re not 100% certain of what will come out of your mouth can be terrifying.

I’ve always considered myself to be an empathetic person, but even so I am guilty of making snap judgments based on what I see and hear from others. This experience with Travis has given me a greater level of empathy for those with hidden difficulties and challenge than I ever imagined I could have. It’s hard to be grateful in a situation like the one we have currently found ourselves in, but I am truly grateful for this life lesson.

An open letter: Dear me at 23

1933772_505565146516_1849_nBy Julie

Happy Birthday from me (you) in 10 years! I know you’re in the midst of a four country, five airport journey back from Albania and you’ve got some serious plans ahead of you and things to do, but just stick with me for a couple minutes.

You don’t know this yet, but your life is about to change in a huge way. Don’t freak out, but this is the last birthday you are going to spend as a single person. In just a few short months you are going to meet the most amazing man. His name is Travis and you will quickly realize that he is going to be one of your best friends and that you’ll want him to be in your life forever.

I know what you’re thinking – “I’m not ready to settle down!” Don’t worry, there is not a person in the world that would describe the life that you two have together as “settled.” You are both very career-driven, so you move around a lot and support each other’s professional goals. As a result you are very successful, although you’d be quite surprised by what your current job entails (I won’t spoil it for you).

You have an amazing dog and three cats (Yes, three cats. He’s a cat person and you really really love him so you have three cats). No kids at the moment, not surprisingly that’s been a challenge for you physically. What is surprising is how much this has affected you emotionally. Don’t dismiss these feelings, it’s okay for you to be sad about them.

Your life is truly wonderful, and it’s only getting started. Although the thought of turning 33 may seem nauseating to you right now, I promise as it gets closer it won’t feel that old. The next 10 years will fly by — please take some time to savor the little moments. You have a tendency to over plan and over prepare. Don’t lose these traits because they really help you get ahead in life, but if you could try and lighten up a bit I think you’ll enjoy life a bit more (Travis will help you with this).

The future has it’s ups and downs. I don’t want to spoil too many things for you but I do want to give you a heads up that the Cubs are going to win the World Series in 2017 (maybe place a few strategic bets and wow our friends?). Also, one of our teams is going to break the Cleveland curse (spoiler alert, it’s not the Browns), but it will come after Lebron totally breaks all of our hearts so brace yourself. It probably doesn’t surprise you that sports spoilers are first on my agenda? I suppose I could go into more things that could positively impact our planet but I’ll just trust that you’ll make the right decisions – and don’t worry you (we) are still a good person.

There’s one thing that I just can’t bring myself to tell you. It’s big. It’s really, really big. It’s the most difficult thing you have ever had to tackle and I should probably warn you but I don’t want to take the risk that the next 10 years will be in anyway altered by your foreknowledge of this particular event. I’ll simply tell you that 2016 will hit you like a ton of bricks (and not just because America makes some pretty, we’ll say “interesting,” political choices that make 2017 a truly wild ride). There are going to be days when you won’t want to get out of bed. You’ll doubt everything you’ve ever known to be true and there will be days that you will wonder if you have the strength to keep on going. I know you hate surprises, so if I have managed to somehow reach you with this letter you’re going to hate me (you) for doing this to you (me), but I promise it’s in your best interest to not try and over prepare for this one. Trust me, you can’t. It’s just not possible.

So, happy birthday me at 23. You have an amazing ride ahead of you. Please, take it all in and enjoy all that these years have to offer. When 2016 arrives just take a deep breath, throw your hands up and let the world take you where it may.

All the Best,

Me at 33

P.S. Travis is going to start lecturing you on proper footwear like 10 minutes after you meet him. Please heed his advice, he knows what he’s talking about. You don’t have any grey hairs yet but if you don’t stop hiking in the crappy flats you bought at Target, your feet are going to be shot and you won’t be able to tolerate anything more than kitten heels.



image1By Julie

In the months since Travis’ diagnosis, I’ve learned a lot about the human brain and the amazing ways it responds to and copes with trauma. If you’ve been following this blog, you know that after Travis’ surgeries he felt a strong connection to the Wolverine and, for a time, really believed he was the Wolverine. This is a connection that helped him to overcome the trauma he was experiencing, and for that I am exceedingly grateful.

The first trailer for Logan, the third and final movie in the Wolverine trilogy, was released while Travis was in the hospital. With little else to keep him occupied in his ICU bed, Travis watched that preview repeatedly. As he became more lucid, and as his connection with the Wolverine became more about inspiration and less about trauma delusion, his anticipation and desire to see the movie grew. But, as the reality of his cancer diagnosis set in he looked at the opening date of the movie and with bit of a catch in his throat remarked, “I sure hope I make it long enough to see Logan.”

The movie opened at the beginning of this month and we were there for opening night  (we’ve also seen it several times since). And, because this film and the Wolverine character have become so incredibly meaningful for us both, I decided to sit down and ask Travis some questions about his take on the movie, what he remembers of his time in the hospital, and how he’s feeling now. Here is his review:

Julie: Have you always been a fan of the Wolverine and X-Men movies?

Travis: It’s strange, but I was always really more of a Batman fan – those were the comic books I read, the movies I anticipated, and the posters I had as a kid (and maybe a little as an adult, too). But, I like superhero and action movies in general so I had seen all of the X-Men movies as they came out.

Julie: Do you remember what it was like in the hospital when you started to talk about the Wolverine?

Travis: Not really, and I’m kind of sad that I don’t get to remember it the way you do. It sounds like it was pretty entertaining. I do remember other things that I’m pretty sure now weren’t real – there was a doctor that I was certain was trying to kill me; I thought I was only allowed to watch animal planet and was very upset about that; and I was certain that someone kept changing the clocks so I wouldn’t know what time it was (I know now that did happen — but it was because it was the end of daylight savings time).

Julie: For months you were anticipating seeing Logan. You watched every trailer and counted down to its opening. Could it ever live up to your expectations?

Travis: You have to realize that I thought that if I could make it to March 3rd, this would be the last movie that I was going to ever get to see.

Julie: That’s a lot of pressure to put on a movie, so did it live up to your expectations?

Travis: I have to see it again so I can say for sure – do we have plans tonight? But yes, in all seriousness, I can confidently say it’s the best of all of the X-Men themed movies that have been made. I really hadn’t realized that Hugh Jackman had been playing the Wolverine for almost 20 years and that’s pretty amazing when you think about it. That’s longer than any of the seven guys who have played James Bond lasted. If this is truly the end of Jackman’s time as the Wolverine, I can’t think of a better way for him to say goodbye to the character. It’s a very satisfying ending for a fan.

Julie: Since your connection to the Wolverine was a new thing, was there something special about this particular character that you connected with at this point in your life?

Travis: I think we all understand that we’re not immortal but when we’re young we see aging and death as far off things. A cancer diagnosis changes that. People start to talk about you in terms of how much time certain treatments can give you. Radiation and chemotherapy treatments take so much out of you that there’s no way you can feel invincible anymore. In the previous movies Logan was invincible but this movie showed that even a superhero can’t take for granted that their powers will always be there.

Julie: I’ve seen a lot of superhero movies since I married a superhero buff, and I’ve seen a lot of westerns because, well, you like those too. This almost felt more like a western than a superhero movie, did you have the same impression?

Travis: There were certainly a lot of western references in the movie and parallels between Logan and the movie Shane. It wasn’t subtle if you look at how it was all staged and assembled – the use of Johnny Cash music was pretty on the nose, there were old western clips used in the movie, and Charles (Professer X) and Logan both have the feel of being old gun fighters. But there are some subtle things in there as well that I think the director intentionally dropped in there to appeal to western movie buffs.

Julie: So here’s the big box office question – Should people go see this movie?

Travis: Is that even a question? Why would you even ask that? Go, see it now! Take me with you!


Cancer and the Affordable Care Act (ACA)

By Julie

Unlike much of the nation, I have not been overly politically engaged in the past few months – but that doesn’t mean that I’m not listening. When I do engage in political discourse, I typically gravitate towards supporting and discussing issues related to education, the environment, and arts and cultural programming – but for reasons I don’t think I have to explain at length, healthcare is a big topic for us right now.

You won’t see our names in the headlines, but over the past five months my family has become a statistic in the healthcare debate. We are now counted among those who use more than they contribute to the healthcare system. We hold our breath as we open bills because it’s nearly impossible to predict what the numbers will say, and we shuffle around our financial priorities to make ends meet each month. I won’t pretend to be an expert on healthcare spending, but I know a lot more now than than I did about this system and I think I have something to contribute to the conversation.

I consider myself to be a political moderate, but when it comes to healthcare my political bias has always tended to swing left. While I value the concept of small government and appreciate the free market economy, I consider healthcare to be a fundamental right that we all should have equal access to. I supported the big picture goals of the Affordable Care Act (ACA), even as I watched my own insurance premiums increase, and I was more than happy to pay a little more for my pizza if it meant that the franchise I was buying from could afford to provide health care to their employees.

I don’t know enough about the economics of the ACA to argue in favor of it remaining as it currently exists, and since the plan for healthcare reform from the new administration is still taking shape I will reserve judgement on what is to come for the moment. Once the new plan is finalized I will rely on a variety of trusted news sources to help me understand its implications and factor that into my future voting decisions, but I will leave the economic analyses to the experts.

What I can contribute to this conversation is an understanding of the economics of balancing an expensive medical diagnosis while trying to maintain some semblance of a normal life. Travis and I were in a better position than most to financially handle what we have been dealt: we don’t have children; we both have good jobs; we are both insured (whew!); and, at the time, we had decent savings. We are also fortunate to have an amazing network of family and friends who have provided support (monetary and otherwise). Still, in hindsight I wish we had been better prepared.

Here is a list of things I wish I would have known and the amount of additional money I would have tried to have in savings to cover one year of unexpected expenses.

  • Medical Bills – $15,000 – The ACA sets an annual “out of pocket maximum” that insurance companies can require of their policyholders. For 2017 this is around $7,000 but the IRS has the authority to adjust this number annually. In our case Travis was diagnosed with cancer in the middle of October so we cleared our maximum in 3 months only to have it reset again in January. All bets are off if this provision disappears from the national picture so make sure you’re familiar with the maximum set by your own plan, and then double that number in case your diagnosis comes just before the end of the year.
  • Travel & Vehicle Expenses – $10,000 – If you happen to live next door to a major medical facility that treats the exact illness you or a loved one are dealing with, you can probably reduce this number. In our case Travis’ treatment requires us to travel approximately 160 miles round trip for each appointment. In general we average one trip per week to the cancer center, but there was a six-week period when we made this trip almost every day. We’re fortunate that gas prices have been relatively low, family members have pitched in to assist with the driving, and we are lucky that the travel distance isn’t even greater than what it is. We expected gas and toll expenses but didn’t think about  wear and tear on the car. We’re due for new breaks and tires about 6 months earlier than I had planned, I’ve already had my oil changed twice this year (and it’s only March) and my Forester, purchased new in 2014 is approaching 120,000 miles so we’re already considering a new car long before we’d planned to.
  • Lodging and Dining Expenses – $5,000 – We have been very lucky to have access to the services of an American Cancer Society run Hope Lodge facility, but there have been occasions where rooms were not available and we have had to stay in a hotel. Depending on the resources available to you, this could go up or down. Traveling and food sensitivities due to medications (chemo) can mean a lot of meals on the road.
  • Miscellaneous – $5,000 – Unfortunately, a major medical problem does not make you immune to other life challenges. In the months since Travis’ diagnosis we have had to replace a hot water heater and repair a septic system at our house. If you’re a homeowner and you’ve just blown your savings on medical bills, you’re going to want to have an additional reserve for house repairs because, well, when it rains it pours. Also, keep in mind that if you are your own handy (wo)man (or you’re lucky enough to be married to one), you may now have to pay to have other people take care of these problems.In addition to household emergencies there have been an uptick in miscellaneous expenses related to our general household needs – for example, money spent on winter heating expenses because we’re home more often during the day and illness often makes you feel colder than you normally do.
  • Mental Health & Other Health Expenses – $5,000 per family member – I’ll be brief here illnesses come up, regular health needs continue, and counseling can be expensive (but it’s an important piece of your recovery).
  • Lost Wages – $25,000 – We are both incredibly lucky to have employers who have been understanding and supportive – my employer has allowed me to telecommute and Travis’ employer allows him to receive donated leave from his colleagues (and we have been amazed by the outpouring of support he has received from them). Even with that I have had to take some unpaid time off, and expect to do so again in the future. Hopefully Travis will not have to go on disability at any point in this journey, but we just can’t be certain. So, ask yourself, how long could you maintain your lifestyle without your or your partner’s monthly income?

This list includes an estimated $75,000 in lost wages and additional expenses, medical and otherwise, that I wish we would have been better prepared to handle – and this just an estimate based on our experience thus far.

At 32 years old I have never paid a late fee on any bill, I have a 401K and a car that will be fully paid off in approximately 2 months. My husband and I own a house that we have successfully converted into an income-generating rental property. We are coupon-cutting-detail-oriented-budgeters with two solid incomes and no children. We were doing pretty well at this whole adult thing, and yet there was no way we could have been financially prepared for the storm that was coming. Being members of a society with a functioning healthcare system is the primary reason that my husband is still alive, and the reason that we have the possibility of a life again when he finally beats cancer.

The Republican Party emphasizes personal responsibility when cutting social programs while Democrats espouse the values of communal support in propping up those most in need in society — the reality is that both principles are right and yet neither is enough when it comes to an individual healthcare crisis. Even relatively privileged hyper-prepared individuals cannot plan enough for the financial challenges brought on by a devastating medical diagnosis, and even the most carefully curated national health care program will not suffice for an individual who fails to prepare themselves for crisis.

As the healthcare debate continues, I implore you to engage, discuss, listen and learn. Don’t assume that one side has all of the solutions. Look for reputable resources rather than relying on memes, sound bites, and the rhetoric of politicians who may be motivated by advancing their careers. Health care should never be a partisan issue.

Love is Patient.

By Julie


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.



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.


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.