candel2014  was the worst & best year of my life.

A few days ago I was standing in church with my 5 year old Hannah. Her face was illuminated by a single candle as the entire congregation sang silent night in the darkness. She looked up at me with an expression full of hope and promise and said, “I love you, Daddy.” This year has taught me the meaning of bitter and sweet.

2014 started on an incredibly high note for me. After years of hard work, I was deeply honored to be given the opportunity to take over as the new Executive Director of the Sierra Nevada Alliance in Lake Tahoe, California.

This was the dream opportunity I had always hoped for. I moved out west to start working with others to protect 40,000 square miles of the most sacred wildlands on the planet.

But sacrifice was required. I was leaving my wife and kids back in Pennsylvania to finish their school year. I got myself a tiny trailer in Tahoe, worked hard all week, while spending my weekends going on epic solo hikes and kayaking journeys of exploration.

However, in the midst of our family’s late summer move, I was diagnosed with an incurable form of stage 4 colon cancer. I spent over a month in the hospital, I lost nearly 50 pounds, and underwent several surgical procedures to prolong my life.

Unfortunately, we had to leave our new home in California and move right back to Pennsylvania to begin my end-of-life cancer treatments. All of our efforts would now be focused on just buying me more weeks and months. But ever since things took that terrifying turn, another remarkable thing happened. Our family has been overwhelmed by a massive tide of generosity, prayers, and help of every kind. This third turn of events was unexpected. I wish I could convey the scale of help we’ve received but even putting a dollar sign on it  would be missing the point.

I’ve heard from long lost high school pals, old drinking buddies, college friends, fellow environmentalists, and even Coast Guardsman that I served with in Alaska in the early 90’s.

Everyone wants to help us. Everyone understands what terminal cancer can do to a young family like ours. Everyone “gets it.” Allow me go one step further and say I’ve never felt alone. That is a bold statement, but I’ve never felt alone in my struggle. Not one single moment.

So, we end the year on a positive note. A note of hope that is not timid or wishful. Our hope is fierce, it demands from the very fabric of existence that I survive. This hope is unreasonable. We know full well we are asking too much from this medical situation. But  I WILL live to post a 2015 year-end blog post and look back on this coming year with pride. I WILL live to see Hannah, age 6 telling me she loves me in that same angelic light next year.

With Fierce Hope,
Happy New Year Everyone
Jim

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jim alaska2Twenty-two years ago this Christmas,  I was bundled up at 2 am trudging through waist deep snow in Alaska. I remember the Aurora Borealis roasting the boundries of the Arctic sky with dramatic hues of green and blue. It was night watch in the US Coast Guard, and I had the plodding task of making sure all of our equipment was running throughout the evening despite the sub-zero temperatures and potential for freezing pipes.

My trek was in a perfect kind of silence. This is the type of silence that one may find in the deepest reaches of space. A silence that amplified the smallest noises warping them into spiraling soundscapes that seemed to last for several minutes. My canvas green coat looked like something left over from the Korean War. It smelled like unreasonably strong coffee and leather seats. Winter blasts had been hemorrhaging white on us for months and people lost their cars, sheds, and pets to such storms. I was homesick for Pennsylvania and wondering why I didn’t just stick with college the first time around.

My journey around Valdez harbor took me past rows of sleepy sailboats and sturdy fishing vessels with adventurous names. I remember gazing into their ghostly interiors and wondering when their owners would return to crack the crystal mirrored sea for the first days of spring. No birds sang. No tiny mammals followed my footsteps with weary features. I was alone in otherworldly exile. Another spent Christmas.

When you are twenty years old you believe you have a thousand Christmas days left. Now that I am forty-two and facing the very real medical possibility that this is my last Christmas on Earth, I can’t help but look back. Some part of me wants to go back and spread my arms wide to gather all Christmas days that I took so lightly and re-spend them. I want to re-possess those fragile moments and bottle them for the months ahead. I long to store them up in some silent warehouse for cautious expenditure. To account now for every tree and for every party I ever attended.

But I can’t do that. I can’t control time. I can only ask my readers do me a favor. I would ask that you enjoy this and future Christmas days remembering how few we get. Say the things you need to say to loved ones. Allow yourself to be swept away with spirit. Be foolish. Be a fool. Embrace every moment. Don’t focus on controlling things or overthinking.

I hope none of you face what I face now. But if that day ever came for you, I hope you will look back and be grateful that you allowed Christmas to pierce any jaded boundaries you may have established. You will be glad you let your heart melt and that you shed a tear when hearing silent night wash over a chilly street.

Merry Christmas Everyone!

With Fierce Hope,

Jim

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IMG_4218Last night was a little Christmas miracle just for me. I mentioned last week on my bucket list that I wanted to make it to opening night of my daughter’s Totem Pole Playhouse debut of “A Christmas Carol.” I made it! Madelyn was incredible!  I was so proud of her.

As I sat in the audience, it was such a bittersweet moment of pride. Here I was, watching my nine year old shine in a professional level theatrical performance. Her dancing was magnificent and she has a presence that lights up the stage. But I couldn’t help imagine her lifetime of shows stretching out years and decades in front of her. Would I be in attendance? Will I be able to watch her blossom as a young performer and person? What about my twins? They love to perform already at just age five. Will I miss ovations and flowers during all of their lives?

As some of you know, theater played a big part in my own young life. I was in nine plays by the time I graduated high school including playing the lead role of Curly in Oklahoma my senior year. I went on to major in theater early in college and had some of my most memorial experiences on stage. Performing shaped who I would become just like it shaped my mother and aunt’s lives as well.

Madelyn inherited her thirst for applause honestly. But in many ways, she can far out accomplish any of us. In just fourth grade she can already sing, dance, and act with a technical prowess I didn’t posses until I was 18 or 19. The sky is the limit for my little girl. I want to be around for every performance and every closing of the curtain. However, the terminal diagnosis is ever present. It also shapes the direction of my life and the choices I make.

Sometimes life requires us to grow into new skin, much in the same way that a snake does. My wedding ring no longer stays on my finger. I’ve lost so much weight from the cancer and chemotherapy that it slides off my finger now. It makes me feel like a man slowly disappearing from the world one fraction of a pound at a time. Our plan is to get it re-sized and renew our vows on a mini-vacation someday, maybe.

But as for today, I plan to soak up all the joy and gratitude that I’ve gained from seeing my little girl, shine like a true star.

With Fierce Hope,

Jim

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little jim

 

final daddy picMany people new to my blog may not know this. I’ve spent most of my career working for environmental groups. I’m used to fighting for the little guy, the underdog, and against the odds.

I’ve helped battle pipelines through wilderness, leaking nuclear power plants, and lead poisoned playgrounds. I know what its like to be battered and down. I am familiar with getting my ass kicked; to having the cards stacked against me. But I also know what it’s like to win. To win big. To beat incredible odds and to share that feeling with my co-workers and family.

I’ve studied the ways of resistance. To double down when others would walk away and give up. Right now is one of those times. Chemotherapy is not going well. I get terrible nausea and then about nine days straight of crippling constipation. The two combine to a level of pain I never knew possible. People want to come see me or call me. Most of the time is a bad time for me. I’m just in bad shape. I’m losing weight and the last time I had a liver scan it looked like I had a thriving tumor collection going inside me.

“Move swift as the Wind and closely-formed as the Wood. Attack like the Fire and be still as the Mountain.” ― Sun Tzu, The Art of War

I am no stranger to odds like this. There is another medicine that my doctor has talked about adding to my chemo routine. He is hesitant because of the side effects that I am currently experiencing. I’m going to ask him to add it anyway. This medicine will greatly increase my side effect issues. It’s gonna be bad. But it also has the potential to double or triple the effectiveness of the other drugs. These are the crossroads that define us. Despite my fear. I have wedding aisles to walk down, and I have grandchildren to meet. I can’t let a one or two year death sentence cost me that.

Right now cancer is not my enemy. Cancer is simply my circumstance. My fear is my enemy. My desire every day to crawl into bed and pull the blankets over my head. My desire to go get an x-box and burn my brain out on games until I’m dead. Every fiber of my humanity wants to run away. To not build a foundation for my family. To not write or create bucket list memories with them. That is my demon. We all have them. In fact, most of us fight the wrong enemy. We hate our boss so we spend all day complaining about our boss. The boss isn’t the enemy of course. Just our series of choices that put us under his thumb is our enemy. The architecture of resistance is finding and fighting the true fight.

I am going to take what ever drastic and experimental measures that are required to remain in my loved one’s lives for just a few more hours. To see another Christmas. I will fight on all fronts. Sure, if I gave up, I’d have a much more comfortable road to death. If I fight like a maniac, I will suffer more, but die with a smile. I will go knowing that I never gave an inch to my fear. I never hesitated in the face of the enemy. Resistance must be constructed deliberately. Like building a house. The big choices must be made in advance and with a clear head.

My entire life has prepared me for this moment.

This is my Alamo.

With Fierce Hope,

Jim

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little jim

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My Fierce Hope Bucket List

I’ve had a handful of folks ask me about my bucket list. I approached the entire bucket list idea with some trepidation. These lists often seem a bit selfish and self-centered to me. Often these lists can just become a mad grab at the world’s hollow experiences, and I didn’t want to do that.

However, the more I considered my own list in the face of this terminal cancer diagnosis, the more I understood that it could be used to give me something to focus on and force me to get healthier and out of the house to create a few more important memories.

If anyone has any contacts or interest in helping me achieve any of these things feel free to e-mail me at jim@fiercehope.com

Bucket List #1: Get healthy enough to play with the kids outside more. Right now my stomach pain and cramping is making just walking hard for me, but my hope is if doctors can get these side effects under control, I’d love to teach our girls to ride a bike and throw/ hit a baseball before I’m too sick to do so. This one is really on the doctors and what they can do.

Bucket List #2: Finish my book. I’ve been working on a book project that is a showcase of my photography, poetry, and inspirational advice for my girls. I do a little work on it every day but I need to finish it. This one is on me.

Bucket List #3: Be healthy enough to see Madelyn perform in “A Christmas Carol.” We have our tickets, but I’ve had to miss so many events with terrible stomach issues that I just pray that I get to see her in this. I am so proud of her and so grateful to Laura Martin for helping us make this happen for her. I just have to be healthy enough to make it to opening night. I will. (Just an update, I made it to this show and I was Ok. Madelyn was amazing!)

Bucket List #4: I’d like to see Europe before I die, possibly a train excursion from London-Paris-Berlin-Rome. I was a world history major in college and I still burn with curiosity about the places I’ve studied. Our amazing Disney trip with the kids was incredible, but not much of a “vacation” for my wife, with three little ones she was mostly in “mommy mode” caring for them. I think a romantic getaway to Europe (no kids) would be bucket list worthy. We’d renew our vows in Paris. I’m thinking this would require someone who has a friend at a travel agency to get it all set up, since its a bit complex, but if readers have any European travel tips or advice on off-season (February-Marh 2015) travel packages please e-mail me at jim@fiercehope.com

Bucket List #5: Eat at a Ruth’s Chris Steakhouse. It may sound crazy since I’m such a steak junky, but I’ve never had a steak at this place. We don’t have any near us but it stays on the list till I get it! (a special note on this one, I’ve been offered tons of help making this happen so this one can come off the list now, no help needed, lol)

Bucket List #6: Take my girls to Broadway. I’d love to take our kids to NYC over a weekend to see a Broadway show and stay in a nice place in Times Square for a few days to give the girls that real New York experience. They’d love to see Cinderella.  We are a family of theatre lovers so it would be great.

Bucket List #7: If I can survive until this summer, I want to take our girls camping. My wife, Amy hates “roughing it,” but I think if just daddy took the kids camping overnight (even in the state park near our home) it would be something they’d never forget. I just need to stick around till summer. Don’t get me wrong however, mommy would be welcome in the woods if she wants to come LOL.

Thats all of them for now, but I’m sure more things will creep onto that list as I grasp at straws to gleen all that I can out of life. Thanks for reading.

With Fierce Hope,

Jim

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little jim

group pic 500I may have spoken too soon when I said that I did well with chemo earlier this week. Side effects came back with a real vengeance Tuesday afternoon and evening.

So, I was so happy to get the mail today. I received a remarkable set of photos from my Appalachian Trail family and it really lifted my spirits. My friends all posed with “Fierce Hope” and I just couldn’t believe my eyes.

The Appalachian Trail Conservancy isn’t anything like a regular workplace. These folks genuinely care for each other (obviously) and they  are simply the kind of people who would do anything for you. Thank you so much, my dear friends. This meant more to me than you can imagine. I love and miss all of you so much.

(Scroll down for more pics!!)

With Fierce Hope,

Jim

PS. If you would like to stay up to date on my condition, subscribe via e-mail here

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jimWe had our meeting with the Hospice today. Very nice lady came to visit and we discussed my situation. Amy and I were both distressed to find out that this entire region has no “outside of home” hospice options. In other words, I can only pass away at home in front of my small children. This is really something we wanted to avoid. Apparently, you can’t even expire at the hospital anymore. I am just concerned with burdening my girls with the memory of me in a hospital bed in the house going through all my end-stage phases. We will keep working on it. Hopefully we can find a solution.

I want to stress I am not going into Hospice yet, this was our informational visit based on my terminal diagnosis.

My palliative chemotherapy has been much rougher for me this time. I’ve been battling stomach problems but I was warned about that. I just try to keep positive and keep fighting. I just got another full dose yesterday and its hitting me very hard and making me feel sick. I know it’s intended to battle my tumors, but it’s hard to get past the fact that pumping my body with poison for 48 hours straight is a good thing.

I’ve also been struggling with ample scar tissue pain in my lungs left over from my time in the Reno, NV  hospital. This discomfort feels like a tight burning in my lungs combined with plenty of numbness and pain. The doctors are telling me it’s normal,  but I had really hoped to be free of all this chest pain before starting chemo. Too late for that.

The donations and gifts have been incredible. I am in a difficult position where I just can’t provide for my family as I have my entire life. So I have nothing but heartbreaking gratitude for all of you who have helped us both through the fundraising sight and through personal gifts and donations including winter coats for my children among other amazing gifts that will ease the burden to my family during this already difficult time.

We also have a new way you can help us out. If you already shop on amazon and use this link, our family fund will receive a small percentage gift with everything you purchase and it won’t cost you anything more than you would have spent on amazon anyway. So shop and help us out with medical and transportation expenses.

More to come this weekend, and I’m glad the tech issues for this blog are now fixed.  Looking forward to getting back to blogging to keep my mind busy.

With Fierce Hope,

Jim

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family shotMy wife Amy spent all day with me on Friday at Penn State Hershey Medical Center, just so I could get a special CAT scan done on my liver. While I sat in the waiting room, I started to think about how my hope is like a grand mansion. It is supported by so many important people. It provides a foundation under my feet and a shelter over my head.

Amy’s life over the past several months has been a whirlwind of medical offices and journeys to cancer centers. She gets out of bed early to arrange all of my medications for the day.  She handles all of the medical bill calls (no fun) and even lines up my complex set of appointments. My wife has shined despite all the pressure on her. I can’t imagine undergoing any of this without her. And she continues to take our kids to and from school, keeps them on track with homework and after school activities, and just generally keeps their lives normal.

But much like any great structure, my house of hope has multiple support beams. My sister Jen has also given me hope for the future. She made a storm of calls to both the National Institutes of Health, University of Pittsburgh Medical Center, and several other places tracking down any procedure that may help prolong my life a little longer. The good news is, she may have succeeded. Thanks to Jen’s efforts, I have a consultation with a surgeon next week for the Isolated Hepatic Perfusion (IHP) procedure. This operation involves isolating my liver and pumping it with warm chemotherapy drugs in an effort to slow tumor growth. Not to mention the hundred+ hats Jen has made as a unique fundraiser at FierceHope.com.

The medical work is picking up steam now for me because my chest x-ray finally showed no infection, just scar tissue so I am finally off of antibiotics. This put everything back on track for getting my palliative chemotherapy treatments started.

Another support structure that’s delivered hope has been my brother-in-law, Tom who found a cutting edge tumor test that may just be a “game changer” in my war against this illness. I sit here tonight so full of gratitude for everything that people are doing for me.

I wanted to note that I can’t always reply to everyone’s blog comments of encouragement, but I read them all (multiple times) and in many ways these serve as the walls and windows in this dwelling I refer to.

I live in this house of hope.  It is my refuge and I just can’t shake the feeling that I will score some significant victories in this fight. Even if I only find a way to seize extra weeks or months of life, I will take everything I can get. The best part of all, I have all of you standing with me and I can’t wait to have some good news to share!

 

with Fierce Hope

Jim

little jim

epcot pic 3Our trip to Disney was truly magical. The girls and I got to spend real time together. Our vacation allowed us to heal and bond as a family of 5 which is something we have not been able to do in a very long time. For that and for all of the people who helped make it happen, I am eternally grateful.  However, it also had it’s own bitter-sweet moments.

Unfortunately, my health declined as the week progressed. By Friday and Saturday I was so sick I had to hang back at our room. It was a hard reminder of my health situation. So the week became a power play between the forces of gratitude in my heart and reminders that this was a final vacation for the Ross family. My doctors urged me to take this trip “immediately” and reminded me that “this may be the healthiest you will ever be.”

The difficulties that I face all seemed to catch up to me late on the night before we went home. I sat up in our bed at the Disney resort and it felt like a bus had parked on my chest. Maybe it was a panic attack. I so desperately wanted to wake up and have my terminal diagnosis to have been a nightmare. It was like a strange drowning sensation. I wanted a lifeline. I wanted more hope than the doctors are giving me. I wanted a way out.

I called this blog Fierce Hope because it’s all about me fiercely fighting for my life. That is what I intend to do. Not because I’m braver than anyone else. Not because I’ve found some secret source of strength beyond my children. But because this is my reality, and I’m not in the business of avoiding the truth.

I am determined to do what it takes. This week will be about setting up whatever meetings I need to have. It will be about knocking on all the doors and kicking them down when needed. Despite what the doctors tell me, I simply refuse to believe that I can’t fight this.

 

With Fierce Hope,

Jim

little jim

dark dayOn a recent dark cold day I was listening to the Smith’s and savoring some sweet melancholy.

It’s funny how our relationship with feeling sad has changed so much as a society. We place ourselves on soft clouds of medication and float over most emotional canyons.

The poets and writers of the late 1800’s (Emily Dickinson, Herman Melville, Walt Whitman) really took the exploration of feeling depression to points of near ecstasy.

Teacher and writer, Timothy Morton once called depression, “frozen wisdom.” His point was that all sadness has something to tell us, but our suffering comes from waiting for it to melt.

But sorrow is a cocktail best sipped gently. Best enjoyed with a steady hand. Best sought and secured deliberately.

An old Zen proverb says “sometimes a man must burn down house in order to see the moon.” Maybe that is me with my terminal cancer. I’m just stretching to see the moon now.

When looked at like a secret symphony, my current situation produces  terrifying notes. I want to see my girls graduate. I want to walk them down the isle. I want to see my grandchildren. But deep within it’s rhythmic inner workings, the situation remains  just a song. I must hear it. All of it. Every note, no matter how sour. Along with every heartbreaking rest.

I yearn to hear the entire song in it’s full depth. To understand all of it and the dark reasons behind these events. Some days it only feels like I can isolate a key stanza. Or I can corner a single counter-melody. I trap it  and attempt to extract answers. But it’s all part of this greater sadness. A storm cloud I am not afraid to embrace. The melody is far too sweet on days like this.

With Fierce Hope,

Jim

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