disney 2I must admit to more than once, entertaining the question, “why me?”
However, not for the reasons you might imagine. I’ve never once felt the urge to scream “why me!?!” at the heavens in anger over my bleak cancer diagnosis.

I do find myself asking “why me?” when a group of good-hearted friends who hardly know me pull together a Disney trip so that I can spend one healthy week with my girls and wife just enjoying each others’ company.

“Why me?”

Or when a group of former co-workers at the Appalachian Trail Conservancy mail me an incredible care-package of stuff that lifts my spirits. You guys really made my day.

“Why me?”

Or when I see the names of long-time friends and allies taking time to donate to our family fund campaign started by a good friend on our behalf.

“Why me?”

Or when I notice nearly 500 people have taken the time to subscribe to this blog in the matter of a few weeks.

“Why me?”
These are just a few examples. The help has been simply overwhelming. The human heart is cavernous. It is full of empty locked rooms. It makes it easy to believe we are alone. But sometimes grace finds a way to flood those dusty floors with a tidal wave of blessings. I simply have no time to feel sorry for myself. I’m far too busy witnessing miracles of friendship.

Jim

P.S. As you see in the blog, we’ve received a generous gift of a Disney trip. However, many of you have reached out to us and offered to help us out with our remaining travel expenses and out of pocket cost. The best way to do this is still just to give here to our family fund which we are using for our every day bills, groceries, medical expenses, travel expenses for my treatment, and now for the remaining expenses of this amazing chance to spend quality time with my family.

Thank you all again!
Jim

little jim

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

couch chillThe more we try to make things seem “normal,” the more slippery normalcy becomes. My wife and I have been working like archeologists trying to rebuild our lives here on the East Coast. We follow the old blueprints of lives we used to live. These lives came before the cancer diagnosis, before the doctor’s appointments, and before I had to put my career on indefinite hold to fight for my survival.

One day we may spend doing some shopping and going to a movie. It’s strange when you begin to think of your life in terms of months or a couple of years. You treat time differently. Time becomes like a handful of foreign currency. The bills seem adorned with strange languages and leaders’ faces you don’t know. Some of this odd currency flows out of my possession so quickly, while other exotic coins linger waiting to be spent.

How do I spend this time? The more important question is, what is a waste of the time I have left? Of course you can drive yourself crazy with this line of thinking. Is going out to a movie worthwhile? Writing my blog? What about other creative projects? What about watching football? Every program on TV feels like junk food these days. You end up boxing yourself up into a hall of mirrors where nothing seems worthy. Real potential exists to just freeze up and not do anything at all with my time.

So all this leaves me with the the conclusion that “normal” is impossible. I can recognize that while still accepting normal things back into my life, bit by bit. So I strive to enjoy the small things and singular moments and continue to hope for the best.
Other General Updates:
1. I had an appointment with my family doctor today to get all of my meds straightened out.

2. Amy and I will be meeting with the oncologist up at Penn State Hershey Medical Center on Wednesday. We are nervous and anxious to hear what he will say about the next steps in this journey.

3. I still remain in a good bit of discomfort and pain from all of my various procedures and surgeries. I was, however, able to kick the oxygen tanks to the curb before our flight home and my oxygen levels have been much better now that we have come down from the altitude.

4. One more thank you to my my brother-in-law Tom and sister Jen  for driving the moving truck back to PA for us.

5.  A thank you in advance to all of the unloaders we will be getting together tomorrow to move our things into storage!

 

And finally to end with a poem I wrote

Cradle the sparks

inside your night

Covet the the shadows of broad day light

trace the hymns

behind what you see

and pray the prize frog free

jim2

 

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

a just kidsThe classic “cancer head shaving scenes” in films are a cliché. The hero finally decides he will fight back and not allow the chemo to take his hair (cue the inspirational music).  Everyone hugs, everyone cries, and everyone knows it will be a happy ending.

Please note: I don’t say this to diminish anyone else’s journey, and it would be lame of me not to mention that hair is a bigger deal for most women fighting cancer than men in today’s society.

My point of this post is actually quite different. Cancer is war. Cancer is a back-alley brawl until one side taps out. Rainbows, unicorns and group sing-alongs need not apply.

The war with cancer isn’t just a traditional, evenly matched, open-field struggle. Instead, we are are talking about an insurrection. What is happening inside my body is a coup, a biological uprising, a mutiny of the flesh.

The enemy cells move among my other cells silently, traveling between organs, establishing new fire bases as I write this. Cancer sleeps, it hides, and spreads as fast as it can.

The weapons at my own disposal are equally barbaric. Courses of radiation that tend to kill the good cells and cancer cells with equal vigor. Or the administration of finely-tuned cocktails of chemotherapy poisons that can be like carpet bombing a farmhouse to destroy an anthill inside it.

From what I’m told, winning a war is all about seizing initiative. So when I found myself passing my barber shop and thought about what the months ahead had in store for me, I decided to act. I got my head shaved.

I feel like a lean, mean, cancer-fighting weapon tonight. While I know that the doctors are saying the odds are against me, I am also acutely aware of the fact that sometimes, like the lyrics of one of my daughter’s first plays, The Secret Garden,  “life will find a way.”

Jim


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little jim

grab neck

It was just a random comment, but both my wife and I caught it. About halfway through dinner, one of our five year old twins, Alison, said,  “I wish Daddy could not be sick.”  Her comments are often missed because she is more soft-spoken than her twin sister Hannah.

In fact, Hannah always has a lot to say about everything.  This makes Alison’s relative silence more powerful to witness. As soon as she said it, I quickly answered that I wish I could not be sick as well, but I am getting help from some great doctors. But the answer felt inadequate even as I was saying it.

My wife and I believe in total honesty with our children, but when it comes to breaking the “final” news of my terminal diagnoses to the kids, we have yet to go “all the way.”  The situation is complicated by the fact that we won’t be having our more detailed cancer meetings until early October, so we are still short on detail ourselves.

When the girls were younger, I felt like such an engaged father. I had a way of getting down on the floor with them and entering all their imaginary worlds. We would build castles, time machines, and spaceships. Our imaginations simply grew together.

But a few years ago, well before my cancer diagnosis, my own work choices pulled me away. I chased some incredible job opportunities that all but removed me from their young lives. That’s the bad news. The good news comes hidden deep inside this recent cancer tragedy.

If I am home fighting this illness now, I plan to use all those free moments to recapture my once mythical standing in their imaginary worlds. This is a trust I am ready to earn once again. Time to crown me, “Pretty, Pretty Princess!”

HEALTH AND OTHER UPDATES

1. Forest fires  here have gotten somewhat better and with my improved breathing they are cranking down my oxygen.

2. My red blood cells are low and platelets are high. Both are most likely caused by the cancer in my colon or liver.

3. I had to get yet another blood transfusion yesterday. It made me feel a bit better so that is always a plus.

4. My mom is heading home and Amy’s sister is on her way to help us out.  We have been blessed by the help of so many family and friends both here and at home who have done so much to help us.


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This week after release from St. Mary’s Hospital in Reno, we passed through the surreal landscape of downtown casinos and skyscrapers shrouded by brown blankets of burning forest smoke from deep in the Sierra.

It’s been nearly a full month since my terminal cancer diagnosis. Getting to sleep in a real bed and see my lovely daughters and wife at home again feels like a blessing that no one could believe.

In addition, I returned to find out about an incredible outpouring of philanthropic support from our family, friends, and former coworkers from all over the country. Friends of friends and even people we don’t know have blessed us with well wishes. People have been swarming to our YOU GIVING PAGE to help us cover costs related to everything from medical bills to emergency travel tickets. Your support continues to bail the Ross family out at a bleak financial moment. We feel each of you with us, every day.

My medical condition hasn’t change much beyond how I describe it in previous posts. I am busy recovering from the procedures, surgeries, and weeks of inactivity that cost me mobility and basic balance. At the end of this month Amy and I will be meeting with a few oncology departments to find out what our best options are for maximizing the number of months and years I have left to enjoy this glorious life.

I came across a quote that I just loved the other day  and wanted the share.

“It is not the end of the physical body that should worry us. Rather, our concern must be to live while we’re alive – to release our inner selves from the spiritual death that comes with living behind a facade designed to conform to external definitions of who and what we are.” – Elisabeth Kubler-Ross


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It was supposed to be the culmination of a lifetime of hard work and dreaming. I had just completed the 3,000 mile journey across the country to continue a new job in South Lake Tahoe.

I remember as I crested spooner Lake Summit, into Tahoe with the vast Sierra Nevada pulled taught out in front of me, I couldn’t help but feel like my family had finally found a home.

This arrival day was ever more important because my beautiful wife, Amy, and three amazing daughters, Madelyn age 9, and twin girls,  Alison and Hannah age 5, would be landing at the Reno Airport to join me.

We had a gorgeous cabin style home in Meyers, California waiting for us, and I would be continuing on as the new Executive Director of the Sierra Nevada Alliance (SNA).

The SNA job was a once in a lifetime opportunity for an environmental advocate and conservationist like myself. The fact that it was in my beloved Sierra Nevada made it seem even more incredible.

This was supposed to be our “happily ever after,” but it soon became our worst nightmare.

Something wasn’t right.  I couldn’t walk across the Reno Airport to meet my family without taking breaks and sitting at benches.  I’d been battling a terrible cough and swelling in my feet during the long drive in the moving truck and something was just “off.”

My wife Amy insisted that I go straight to the hospital. Immediately the doctor found what she described as a “rip-roaring” pneumonia, but that was just the begining. Upon further testing, I was also diagnosed with Stage 4 colon cancer that had metastasized to my liver.  If I accept no treatment or chemo at all I have about six months to live. I’m told with aggressive radiation and chemo I could possibly give myself a few more years.

But those of you who know me, know i’m a fighter. This blog is about that fight. We the Ross family need resources, help, and your helpful wishes and prayers. Thank you to everyone who has supported us so far! The two most important things people can do is make a donation at FierceHope.com and/or sign up for my family updates on that same page.

thank you all

Jim Ross

 

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