How Much Time Do I Have?
jimbridge2Time is funny. Before my terminal cancer diagnosis, having another birthday was something I didn’t get that jazzed about. Birthdays after 40 are just reminders we are getting old. However, my new reality has me looking at my 43rd birthday in a new light.

If you would have told me I was going to survive to 43 in October I may not have believed you. Things looked bleak. But now, I see my birthday as a survival waypoint. This is a day for which to be joyous. I also come into it with some trepidation. What if this is my last one?

We asked the doctor a while back about how much time I have to live. He wouldn’t give a clear answer. The most we have to go on is statistical charts. Those give me an 11% chance of living another year. But that chart must be taken with a grain of salt. I am lumped in with many 80 and 90 year olds in that number. I don’t have many of the other complicating medical factors that older folks have.

I’ve been lucky lately as the weather hasn’t been so brutal as to keep us indoors. I’ve been playing soccer outside with the girls. Each moment is gold. It’s hard not to want to squeeze more out of each moment than is possible. The situation makes you want to milk the moments dry. The slight desperation in the background becomes like a driving wave of feeling. It becomes a wave of wanting more. I want more days outside. I want more birthdays like April 30th, 2015.

Other updates:

  1. I’ve been flooded with birthday cards. These have been such a lift for me! Thank you.
  2. I wasn’t able to do chemo this week. My blood platelets are too low. Ironically, it is the chemo that causes this to happen, and when it happens I can’t get the chemo. Missing treatments means the tumors could be rebounding. For now it is a waiting game to see if my counts will be high enough to get treatment next week.
  3. We finally got ourselves moved over to the new house. It is nice having the extra space, and we are so grateful for the help we got from so many people to make this move possible.

Mother of the Year

IMG_5783I am looking for some kind of way to nominate my wife for mother of the year. Not only is she dealing with a husband who is dying, but she also finds time to do incredible things with our children every day.

I knew even when we met in college that she would be a great mom. She certainly has the education for it. Amy has degrees in both elementary education and early childhood development. So her resume was already stacked before we had any kids. But to watch her give up her days for our children every day is amazing.

Here is a small example. Just today she has somehow found time to do all the girls’ hair, take them shopping for birthday gifts for two different parties that they’re going to tomorrow, paint two dozen Easter eggs with them, play a board game with them, and still did their nails all fancy tonight. Who does all that? My wife.

The other reason I think my wife is such an incredible mother is because she has two great parents. That can’t be overstated enough. Both her mom and dad are smart and patient parents (and grandparents). That gave her a foundation for parenting that a lot of people don’t get.

Most importantly, she listens to our children. She gets right down next to them when they speak and gives them her full attention. You don’t see her on her iPhone plugging away only half listening to them (like I do sometimes.) When they talk she listens and it’s a moving thing to see. My wife plans every day with our kids sometimes weeks in advance. She juggles multiple birthday parties, choir practice, dance lessons, and play practices all in a single week. I am totally serious when I say I want to nominate her for mother the year.

If anyone knows anywhere that runs a contest like that, please send me a link because I’m going to get the campaign going now. What an amazing mom she is.

With Fierce Hope,
Jim

little jimPS: Special thanks to all of you who have been sharing my latest posts on Facebook and twitter. It’s really helped this blog reach a massive readership. (almost 2000 subscribers in just a few months).

You can subscribe to e-mail updates HERE

A Visit to the Funeral Home

geisel homeThis week we visited Geisel’s Funeral Home to make all my final plans. The fierce hope decision to go ahead with this wasn’t connected to any specific health changes. But for anyone facing a terminal diagnosis, it makes sense to get these plans taken care of now while I still can.

I also saw my decision to do this as a gift to Amy. The last thing I want to do is stick her with a ton of decisions on the worst day of her life. I figured if I could get all of these details set up, we could finally stop focusing on my death and start focusing on living. After my talk with hospice, this was the last meeting like this I needed to have.

I was so pleased with how it went. The person we worked with, Sharon Jacobs, was just amazing. The way she handled my unique situation was first class. It was liberating to get things all set up. She displayed grace and understanding throughout our entire visit.

I must admit however, going to a funeral home and setting up your own arrangements puts you in a very introspective place. My goal was to set up a celebration of my life. I was determined that it wouldn’t be a big, dark, depressing affair. I have lived such an incredibly full life.

I have truly lived. In some ways, I have lived more in any one year than some folks have lived in entire lifetimes. I’ve never been afraid to embrace life. Even during this final chapter, I don’t want to miss a thing. Not one detail will be overlooked. Life is so rich for me right now. I am seeing the world in high-definition and full dynamic range. I am walking everyday. I stand in parks with my arms out wide. I look up and thank God for the clouds. Every cell in my body wants to soak up living while I can.

In fact, I want to recommend a great life-testing technique I read about several years ago. Sit down and write your own obituary. Don’t write it for today. Write it for 30 or 50 years from today. Fill it full of all the incredible things you still plan to do in life. It can serve as a powerful roadmap to follow your heart and dreams!

With Fierce Hope,

Jim

FullSizeRenderPS: Special thanks to all of you who have been sharing my latest posts on Facebook and twitter. It’s really helped this blog reach a massive readership. (almost 2000 subscribers in just a few months).

You can subscribe to e-mail updates HERE

Jim’s Top 10 Inspirational Books

National Colon Cancer Awareness Day is on Friday, March 6th.  Since my blog is meant to be inspirational, I wanted to list my most inspirational books for everyone, listed in reverse order. My favorite book for Fierce Hope readers is book #1 etc.

 

  1. Switch: How to Change Things When Change Is Hard by Chip and Dan Heath

Why is it so hard to make lasting changes? I love the way Dan and Chip answer that question.

  1. New and Selected Poems, Volume One by Mary Oliver

My favorite nature poems! Mary Oliver’s perceptive, brilliantly crafted poems about the natural landscape and the fundamental questions of life and death.

8. Die Empty: Unleash Your Best Work Every Day by Todd Henry

“Embrace the importance of now, and refuse to allow the lull of comfort, fear, familiarity, and ego to prevent you from taking action on your ambitions…The cost of inaction is vast. Don’t go to your grave with your best work inside of you. Choose to die empty.”

  1. David and Goliath: Underdogs, Misfits, and the Art of Battling Giants by Malcolm Gladwell

Malcolm Gladwell challenges how we think about obstacles and disadvantages, offering a new interpretation of what it means to be discriminated against, or cope with a disability, or lose a parent, or attend a mediocre school, or suffer from any number of other apparent setbacks.

  1. The Icarus Deception: How High Will You Fly? by Seth Godin

Another book that changed the game for me. Icarus was warned not to fly too low, because seawater would ruin the lift in his wings. Flying too low is even more dangerous than flying too high, because it feels deceptively safe.

  1. Letters to a Young Poet by Rainer Maria Rilke

Can’t miss this book! Rilke’s timeless letters about poetry, sensitive observation, and the complicated workings of the human heart.

  1. 177 Mental Toughness Secrets of the World Class: The Thought Processes, Habits and Philosophies of the Great Ones by Steve Siebold

Is it possible for a person of average intelligence and modest means to ascend to the throne of the world class? The answer is YES!

  1. Start with Why: How Great Leaders Inspire Everyone to Take Action by Simon Sinek

This book changed my career forever. “A powerful and penetrating exploration of what separates great leaders from the rest.”

  1. Spiritual Enlightenment The Damnedest Thing

This book is a great place to start with the “big questions” in life. Not for the faint of heart. This book changed my entire life.

  1. The Last Lecture by Randy Pausch

This book is my inspiration for the work I do now.

With Fierce Hope,

Jim

FullSizeRender

PS: Special thanks to all of you who have been sharing my latest posts on Facebook and twitter. It’s really helped this blog reach a massive readership. (almost 2000 subscribers in just a few months). Don’t forget to wear your Fierce Hope shirts (or anything blue) on Friday and tag Amy and I in your selfies!  Hope to do another video to thank our supporters soon!

You can subscribe to e-mail updates HERE

sleeping fierce hopeYes, a morbid title, but I realized with fierce hope that today was the 6 month mark since my diagnosis and it is also the amount of time that medical professionals said I would live without chemotherapy. A lot of people in my situation opt-out of chemo. The reason being that Dr.’s tell us that I have a 0% chance of it curing me. People figure, “if I’m a goner anyway, why suffer?” This line of thinking was pretty appealing to me. The idea of pumping yourself full of poison just to live a little longer does seem kind of silly.

However, when I look back at my health condition when I started chemo, there is no way I would have made it even three months. I was in awful shape. My tumors were exploding in number and size at the time. I was VERY sick.

So here I am, six months later and lots of chemo has been pumped into me. I’ve gained almost 20 pounds, kept all my hair, and feel much better save a few days a month where I feel terrible due to the chemo. Maybe this stuff is working. The real test will be in March when I have another scan. If by some miracle they switch my status from “non-surgical” to “surgical” I am going to be one happy dude. Surgery won’t mean I can be cured, but it will add up to more time alive. Like they say in the film “The Big Lebowski” until then “the dude abides.”

How lucky am I to even be walking around like this? It’s amazing to me. But it also makes me greedy for more. I want more time, more items off my bucket list and more meaningful projects completed, and of course, more time with my family. I want it all. I am hungry for life. I want to experience everything before its too late.

My senses are sharpened. I am seeing the world in high definition for the first time. I’m noticing things I never noticed before. I feel like some kind of cancer patient superhero. Having this happen to me has caused me to wake up to the world that’s been around me all this time. I thought I was aware of it, but I was missing all of it. I’m not just talking about the trips to Disney World or family visits. I’m talking about the little things every day. Even the pain, nausea, and discomfort are better than being dead and gone. Give me life any day.

In fact, in honor of reaching my “death day,” I’ve decided to clean up my bucket list a bit. I enjoy ranking all the things I want to do. It gives me purpose and causes me to make deliberate choices. Thank you to everyone who helped me check off so many items with well-wishes, donations, prayers, love and gift cards. We are making meaningful memories and thanks are the best we can do.

 

PS: Special thanks to all of you who have been sharing my latest posts on Facebook and twitter. It’s really helped this blog reach a massive readership. (almost 2000 subscribers in just a few months)

You can subscribe to e-mail updates HERE

with Fierce Hope

Jim

little jim

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

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

little jim

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

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

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

PS. if you would like to stay up to date on my condition, just subscribe vie e-mail here

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

single pics 500

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

little jim