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

vowsConsidering so many of my past blog posts have been bleak on the medical side, I am so happy to write this today. Before we get to the medical update, I want to report on one of the best weeks of my entire life. My mom generously offered her condo and car in Florida for Amy and I to get away together. On top of that, my amazing mother-in-law, father-in-law, and sister-in-law made room in their lives for a full week to watch our three daughters back home. Also, my Uncle Jack and Aunt Shirley shuttled us to and from the airport and even took us out for an amazing dinner.

So, we went down to West Palm Beach and South Beach Miami and had the most romantic getaway. We renewed our vows framed by the ocean. It was 81 degrees and sunny almost every day of our visit. As many of you know, money is super tight with my being unable to work right now. Your gifts have been so generous and have helped sustain us as a family, so we knew we had to use our ingenuity, and we relied on a ton of free stuff from a hotel in Miami who knew my medical situation to pull this entire thing off. My next blog post goes into more detail about the Surfcomber hotel that we stayed at and how they hooked us up with the VIP treatment.

But as for today, I just want to say that renewing my vows with the woman I married 16 years ago has given me so much more energy and will to live. I have to survive this cancer. Things are just too good for me right now. Even as I battle the chemo (I was up vomiting for 8 hours all Sunday night), strangely enough, lying on the cold bathroom floor, I was still flooded with obvious reasons to be grateful. I get out of bed early enough to have breakfast with my kids. I watch them. I think about their future. I’m blessed. I was chosen for this. I am choosing to embrace this situation not as a tragedy but as my birthright. I was born to endure all this. It’s changing me.

One of my all-time favorite documentaries is a film called “General Orders No. 9.” It is wonderfully narrated and contemplative in style (think director Terry Malick). It is a masterpiece. I call it, “R. Maria Rilke meets Joseph Campbell.” While I don’t consider myself over-the-top religious, my life and my struggle with this illness does remind me of a Book of Job-like quote from that film…

The Lord loves a broken spirit. Pray that we are well broken…

If interested, you can check out the film trailer HERE

So, now for some good medical news! My doctor let slip an incredible bit of information during my visit yesterday. He said, “Since starting treatments, your blood’s tumor markers are declining in a nice downward slope.” Amy and I knew something must have been going on. I am finally getting some energy back. I continue to eat and gain weight magnificently. But since my terminal and incurable diagnosis in August, this happens to be the very first sliver of good news we’ve ever gotten. That’s the equivalent to a four-month crossing of a desert of bad news. All else was terrifying. All else was hopeless. Yesterday was a happy day and I couldn’t wait to rush to share it with you all, my beloved friends and supporters. Not to say that I am out of the woods or I don’t have bad days, but we will take every bit of good news that comes our way.

While it isn’t a cure by any means, it shows I am making some kind of progress, and that my insistence on the additional medicines and all the horrible side effects may not be in vain. I’ve got the tiger by the tail; I do not intend to release him.

With Fierce Hope,

Jim

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

little jim

daddy gals2I get asked a lot about my medical situation. I’m not a doctor so most of this post is translated into my own terms so all my pals who are doctors and nurses I’m sure will cringe, lol.

But I wanted to update everyone on where things stand right now. The last two scans I had of my liver happened in August and October. As many of you remember, the growth rate of my tumors was pretty explosive in just those two months (pre-chemotherapy) so that is why we got aggressive treatment right away. I have another scan of my liver they will do either at the end of February or early March. The hope is that we’ve slowed the speedy growth and number of new tumors substantialy at that point.

We asked our doctors the classic, “how much time do I have?” question and they said they are always hesitant to answer that because everyone’s body is different. We were told in Tahoe that the best I could expect would be about 2 years, but the docs at Hershey aren’t saying much. So we are stuck with statistical results that others have had with my treatment. Without chemotherapy, people with my level of stage 4 colon cancer have a survival expectancy of roughly 6-8 months. When you add chemo, life expectancy jumps to about 15 months. However, we will be adding the drug Avastin to my routine at the end of January. Avastin may bring with it more extreme side effects (no fun), but it also statistically alters life expectancy up to 21 months. But liver surgery is the ultimate goal.

Right now I am not a candidate to have any part of my liver surgically removed. If by some miracle the chemo drugs shrink my tumors enough, I will then be able to have surgery which may extend my life a bit more. Keep in mind, all of my treatments are still palliative (end of life) and not curative, a fact that the doctors are all too quick to remind us. They are designed to keep me alive longer and that is a good thing.

A few people have asked why I am not a candidate for a liver transplant. From what I understand, once the cancer gets out into my body and metastasizes (like it has for me), the likelihood of it reappearing even in a new liver is very high.

allyI’ve also had some questions about if the cancer has spread to my lungs. That is very common for my type of cancer, and I did have a bunch of lesions on my lungs when they last checked them. They did a cytology test on my lungs during my colon surgery in which they basically put saline into my lungs and then pulled it back out to check the cells.  The way they explained it to us is to think of the lungs as a tree.  The “branches” look o.k. but that doesn’t mean that there can’t be something wrong with the “leaves.”  From what they can tell, the cancer has not colonized my lung tissue yet. I do suffer from terrible lung pain and chest numbness, but the doctors seem to think that is all just left over from scar tissue resulting from my lung surgeries and chest tubes that I had this summer.

So, that’s where I am medically at this time.  The chemo side effects vary each time and some get worse each time.  I’ve learned how to manage them and find I have my best days about a week after chemo.  It makes going back the following week difficult, but I know I need it to fight this beast.

On a lighter note, Amy and I are planning on going down to Florida to use my mom’s condo in West Palm Beach to get a little sun and sand. We didn’t get much romantic time when we all went to Disney since Amy was in “mommy mode” the entire time. And honestly, I just love the beach and want this chance to stick my feet in the ocean one more time.   We can’t wait to get away a little and we may even renew our vows on the beach if we can get it all worked out.

shirt imageI wanted to thank my sister for her t-shirt sale she’s re-started to help us.

People seem to love their shirts and I really enjoy seeing people wearing their shirts in Facebook pics! Keep sharing your pics and tagging us, and stay tuned for a day in February when we will all wear them and post them to Facebook to raise awareness for colon cancer.

 

I hope everyone had a great New Years!

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

babySix years ago we got a lesson in the power of Fierce Hope.

Long before my struggle with cancer or any of the events of this last year, my wife and I spent 64 days of hell with our twins clinging to life in the neonatal intensive care unit. On more than one occasion I got the “look” from a nurse or doctor that one twin was simply not going to make it much longer. I’m not exaggerating when I say it was a moment-to-moment battle for a while.

Before I go into more detail, I would ask you to watch this short video I made at the time about it.

See video below

Our struggle started before their birth, as Amy explains below in an excerpt from our Care Pages.

Amy – “From the moment we found out we were expecting twins, this pregnancy and birth has been a wild ride. We were referred to the perinatologists at Maternal Fetal Medicine in Harrisburg at 26 weeks because there was a significant size difference in our twins. The doppler scans revealed some other concerns with our little Alison. We started getting the ultrasound scans twice a week to keep an eye on things.

preemie twinsTwo days before Christmas, I was admitted to the hospital for high blood pressure and to check for preeclampsia. I got to leave the hospital on Christmas Eve and we spent Christmas with my family at my sister’s house in Harrisburg. Three days later, my water broke and I headed to the hospital again. My water had only broken around Alison so they started me on a Magnesium sulfate drip to stop contractions and to give the girls some extra time in the womb. On January 2nd, I started having some stronger and more regular contractions. Each time they tried to track them with the monitor, however, they slowed down so the Dr.’s did not feel that I was in labor. Boy were they wrong! After continuing with strong contractions through the day on January 3, I started to feel that something wasn’t right. In the evening I got up to use the restroom and could feel one of the babies pushing down with lots of pressure in the birth canal. They called the Dr. and confirmed that labor had started. Since they knew that Alison was breech and she was not strong enough to endure labor they rushed me down the hall for an emergency C-section. It turns out that Alison’s leg was indeed in the birth canal and that is
what I felt. The whole process felt very much like ER with Dr.s and nurses running down the hall pulling on their scrubs. They had me prepped and under anesthesia in what felt like 2 minutes. It was probably best because I was very scared. They tell me that Jim was very brave and calm and sat with me throughout the surgery. Alison Elizabeth was born at 8:51 PM and weighed 1 pound 12 ounces. Hannah Mae was born at 8:53 and weighed 3 pounds 11 ounces. They took them both straight to the NICU and so our journey begins as parents of preemies.”

ross girls nowAnd a journey it has been.  During their 64 day hospital stay, Hannah had two chest tubes to help her breathe. Alison struggled with maintaining her body temp and feeding issues. When they finally came home they were on apnea monitors for another 2 months. Alison had double inguinal hernia surgery and Hannah had tear duct surgery in the months following their discharge. Alison battled with pneumonia and continued to have feeding trouble at home. Hannah used an inhaler until she turned a year old. They got physical and occupational therapy until they were 2 ½ and Alison continued feeding therapy until she was 3.  In the grand scheme of things, they are doing amazingly well for being born 10 weeks early.  Alison still has some sensory and eating issues but we know how to deal with them.  They are both thriving in kindergarten.  We are incredibly blessed.

On their 6th birthday we reflect back on all that they have overcome, and how their crash landing into our world made us stronger parents and taught us how to rely on each other.  We draw on that strength once again, as I fight my current battle with this cancer.  After watching them fight to survive, I just have to stick around to watch them grow and flourish.  Happy 6th birthday to my sweet little baby girls.

 

With Fierce Hope,

Jim (with some help from Amy on this one)

little jim

flyawayMy 10 New Year’s Resolutions

1. I will survive – Starting the year 2015 with terminal cancer in my colon, liver, and possibly metastasizing elsewhere makes living through this entire year a high priority.

2. I will inspire others – As I’ve mentioned, I am working on a book project that I think is pretty special. I can’t wait to share it with the world in 2015. As a blog bonus, at the bottom of this post is an Amazon window with my top ten favorite inspirational books in it.

3. I will see the poetry around me – All of us are swimming in a sea of visual poetry. The way light bounces off the edges of buildings. The way the tops of trees quiver imperceptibly with early promises of spring. I want to start my year by seeing more of that world. I want to become better at translating the messages that world offers us.

(About blog photo: I took this photo of my daughter playing. I took the shot with an experimental lens on my iPhone with the hipstamatic app, I just thought it had an other-worldly feel)

4. I will listen to people - This one is straight forward. I want to listen to people completely and with full attention. That means putting my iPhone down and looking at my kids when they speak to me.

5. I will break rules - All of us form unconscious boundaries within our minds. These boundaries go unnoticed and shape our decisions. I want to crash through those walls this year.

6. I will think with my body – Yes, this sounds a bit “new age-ish,” but, I do believe the body has its own capacity to think (like thinking from your gut.) I want to work to improve and explore that technique this year.

7. I will say “no” more – The happiest people I know are good at just saying “no” to people. We all want to please each other so much that we can find ourselves adrift in an ocean of half-fulfilled obligations that we never intended to do in the first place. A clean, “no,” is a gift to the other person as well. You are saying, “I don’t have time to respectfully complete this task for you.”

8. I will daydream - This isn’t some Carpe Diem BS statement. I’m talking about some old-school daydreams that have the power to send my life in bold and dangerous new directions.

9. I will love my old self – Regretting the person I used to be is an insidious poison that works in my marrow to strangle any self-growth I could hope for. “Old Jim” made a lot of bad choices. I used to drink a lot and wasted decades on video games and wallowing in self-judgement. But if I don’t find a way to go back and love that guy and forgive him, I will be wasting precious hours and days. The poison will remain.

10. I will say goodbye – No way around the fact that I may not see 2016 (at least according to the doctors). If I beat the odds, GREAT! But I also know enough not to plan on that. I want to spend the early part of this year saying goodbye to all of my loved ones while I am still healthy enough to do so. A proper goodbye has incalculable value, and that will start with my wife and three amazing little girls. I want to stay with them forever but when I read about people dying tragically and abruptly I worry about the fact that they never had an opportunity to say goodbye.

With Fierce Hope for the New Year,

Jim

PS. Below is an amazon window to my top ten favorite inspirational books. I know I’ve missed a bunch of good ones, but I recommend these for sure.

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