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)

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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

candel2014  was the worst & best year of my life.

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

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

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

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

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

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

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

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

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

With Fierce Hope,
Happy New Year Everyone
Jim

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little 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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