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

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

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

jim2

 

 

jim bay2It was a long day.  I often feel like a little factory whose only function is to manufacture tiny fragments of  courage that will float like cartoon icebergs, allowing me to avoid the frigid waters below. This deliberate creation is the very definition of Fierce Hope. It is the kind of hope that is coiled like a snake in the corner, ready to strike when needed.

I had my first of many meetings today with the cancer team at Penn State Hershey Medical Center. While I’d love to report it went smoothly, it was actually a bit bumpy. We found out plenty of our scans and records had not made it to them.  A change-over in care from the California / Nevada hospitals to the East Coast was mostly to blame. So, much of our time was spent figuring out what they needed and what tests I still need to have done, therefore, I don’t have much to report on my condition today.

The primary oncologist did make sure to remind Amy and I that this is palliative (end of life) care only that we are receiving from them and not “curative.”  We already knew that this was an incurable and aggressive cancer that I have, so neither of us were shocked. I did attempt to get the doctor to give me a general idea of how much time I can expect to survive (I suggested 3 months to a year as an example to him), but he declined and said he may be able to do that when more of the tests come in. Things remain pretty bleak strictly from a medical standpoint.

As many of you know, we’ve been trying to arrange some kind of brief family trip (possibly to Orlando) and the doctor emphasized that this, right now, may be the best I ever feel again and to take that trip ASAP before I begin treatment. One reason for this is that he doesn’t anticipate any break in my chemotherapy once it is started. Unlike some patients, my treatments will be continuous until they can figure out if it is working. This is also where a tiny glimmer of hope remains. If the chemo works extremely well, I MAY be eligible to have a section of my liver tumors surgicly removed. I joked with Amy that I know I am in bad shape when I hope to get healthy enough to have a chunk of my liver removed!

Special thanks to everyone for the generous financial support you’ve sent along.  Amy and I have been using the gifts to support our move back across the country and our very survival. We are also extremely grateful for the support of loved ones, friends, and our church family who have helped in countless ways to make this move possible so that we can be with our family and support network. My heart breaks with gratitude for all of you who have taken time to subscribe to the blog, offer support, and share our story.

Best to everyone and thank you all
Jim

jim2
today I wanted to end with a favorite Rumi Poem

I am part of the load
Not rightly balanced
I drop off in the grass,
like the old Cave-sleepers, to browse
wherever I fall.

For hundreds of thousands of years I have been dust-grains
floating and flying in the will of the air,
often forgetting ever being
in that state, but in sleep

I migrate back. I spring loose
from the four-branched, time -and-space cross,
this waiting room.

I walk into a huge pasture
I nurse the milk of millennia

Everyone does this in different ways.
Knowing that conscious decisions
and personal memory
are much too small a place to live,
every human being streams at night
into the loving nowhere, or during the day,
in some absorbing work

I didn’t jump right out of bed today. Instead, I huddled under my blankets and listened to the melodies produced by my family getting ready. Book bags, homework folders, and special projects all finding their proper places. At first listen, it’s chaos. But all processes when observed for long enough, will flower into song. The giggles and imaginary voices mix effortlessly with disagreements over who spilled the water on the table; all of the activity rich with texture and meaning.

Lifesadream_thumbToday I’m talking about a subtle clarity I’ve been gifted since my terminal cancer diagnosis. I am awash in stars. I notice so many more of these processes awaiting observation. Like the celestial torrent of blessings, prayers, and well-wishes that seem to fill my inbox. I read all of your messages. I pour over them before bed as I fortify my spirit for the long night ahead.

I also celebrate the tiny victories. Today I was taken off of oxygen completely, so my breathing is nearly back to normal. This will make flying home on Friday far less complicated. I’m getting stronger every day. I love to walk, and the itch to hike never goes away, but I’m not ready for that.

I have so much to celebrate. Today was my wife’s birthday. She spent her entire birthday packing our belongings for the move back east, taking care of our kids, running me to my Dr. appointment, filling my prescriptions, keeping track of my medication schedule, making important phone calls to coordinate our trip home, and then topped off her day by personally selling my old truck! What a rockstar!

I am surrounded by stars. Maybe things just needed to get a little darker for me to see it all.

 

P.S.  As an extra treat, I posted a video below. I made this video of my girls  a few years ago using an 8mm app.

If you have trouble getting the video to work (because you get my updates via e-mail)  trying going directly to this blog page for this post, the video will be at the bottom of the page and work fine

 

 

Jim

jim glasses small

 

Just 6 weeks ago I was kayaking alone out to an abandoned island. Just before that, I was hiking the rim of Spooner Lake looking for bears or other wildlife. But no more adventurers for now. No more searching for Oz. Instead, we are faced with a quick click of the heels and a sad return home.

1 blue water

As many of you may have heard, the Ross family’s exciting California relocation will be officially coming to an end on Friday, October 3rd. This big life change actually only lasted a few days.

I won’t go into a lot of detail as to why, but if you are new to this blog read the OUR STORY page for the backgound.

My sister, Jen and her husband, Tom will be showing up to drive all of our household things nearly 3,000 miles back across the country to Pennsylvania.  We will put everything in storage in Chambersburg, since we will be staying with Amy’s parents for a time while we get my cancer treatment plan in place, and try to get back on our feet financially.

In addition, my wife Amy and her sister Brenda have been working tirelessly to re-pack everything that was unpacked. Thankfully, Amy’s parents were already here helping to organize things, and her brother Dave organized, packed and labeled everything in our garage.  We have been blessed beyond measure with the help of family and friends during this difficult time.

Driving around Tahoe now feels like cruising through a film set of a movie that will never be made. Since I’ve be out here since February getting ready for my family to join me, I’ve had ample time to build imaginary futures for all of us. None of these things will happen now, but they’re dying hard in my subconscious and deep inside my dreams.

I imagined hikes along unexplored lake trails. I dreamed of the look on my daughters’ faces the first time the mist from a Yosemite waterfall tickled their noses. I wanted to show them what made me fall in love with the majestic Sierra. I wanted to show them MY California.

Beyond that, I am also grieving the end of a career. Leaving the Executive Directorship of such a prestigious mountain conservation organization to go off and fight this cancer, leaves me in a bit of  limbo.

So for now, no flying monkeys or men behind the curtain; just the cold hard facts of the current situation and a goodbye to California.

 

jim glasses small

Jim