jimamyA Thirsty Man in the Desert

When it feels like you’ve gone a long time without much good medical news you begin to feel like a thirsty man in a desert. You find yourself casting about for any glimmer of hope or good news.

Yesterday was one of those good news days. We met with the liver surgical team at Hershey Medical Center, and the meeting really helped me get some fresh perspective on the status of my illness.

The first thing they reminded us of is just how much my tumors have shrunk since starting chemo. Despite recent concerns that the tumors are growing again and the fact that I have been feeling pretty lousy, for the most part I’ve held onto the gains I’ve made in the fight for my liver. Secondly, we discussed a new procedure that I may be a candidate for if the new chemo cocktail I’m starting next week doesn’t produce enough results . The procedure is called Y90. It involves injecting tiny spheres of radiation directly into one side of my liver at a time. I’m hoping the new chemo and then possibility the Y 90 will buy me a substantial amount of time.

I want these new findings to be an oasis in the desert and not just a mirage. Only time will tell, but at the time I write this, I am feeling very upbeat about my situation.

With Fierce Hope,

Jim

jim and gals2Life is seductive

If I’ve learned one thing during my battle with terminal cancer it is how much life wants to be lived. I went to my girl’s swim class yesterday for parents day and that was brought home to me.

I must live. The way that light reflects off the water. The giggle of my childs play in the pool. An tide of small details overwhelms me. Life is seductive. Unlike the silence of death, life makes a case that we must live it.

My advice to anyone out there reading this remains the same, live life. Soak in that storm of detail that surrounds you. The birds are singing to you. Don’t waist time worrying about the small things. The small things are called small for a reason. Don’t be on the lookout for slights or insults because if you are, you will find them.

Ride above the noise and drama of the half-lived life. Find that spot above it all where you can inhabit. That spot waits for you everyday. It is above everyone. If you live life like that you will pull others up to your level as well.

Medical Update: No new news, I get a scan next week so I may know better after that. Thank you everyone for the words of encouragement and support.

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

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

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

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

Other updates:

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

One Step Forward, Two Steps Back (Guest Post from Amy)

jim and amy final3I wanted to give our Fierce Hope followers an update since it has been a little while since Jim has written. As you recall, we got some pretty good news at his last oncologist appointment, finding out that the tumors are shrinking and his CEA levels are coming down. This is a big step forward for Jim, and it gives him motivation to keep going with the chemo.

Since that post, we have had a chance to actually see the scan that showed the shrinking tumors. It looks much different than the one he had before starting chemo. The tumors in his liver are indeed shrinking and his lungs look much better now too. However, in spite of this good news, he still has too many tumors in his liver to be eligible for surgery. This was a big disappointment for us. Jim had really hoped he would be able to have liver surgery, since statistically that could prolong his life. But for now, he will just continue with chemo and muscle through the side-effects because we know it is working. He is having a lot of pain and numbness in his hands and feet which is a normal (and, sadly, permanent) side effect from his type of chemo. He is pleased, however, that he is not losing his hair and his anti-nausea meds work relatively well. He still feels rotten while on chemo, but at least it is working.

The chemo is working. When he can get it. This past week he came down with a cold. He felt really lousy for a few days so he had to cancel his chemo treatment. All subsequent appointments have been rescheduled and we are hoping to get back into a routine this week. Chest colds are scary now because of everything he went through with the pneumonia. He says he is feeling better, but I still don’t like the sound of his cough. He goes for chemo tomorrow and we will be asking the nurses if he needs to be seen by a doctor. At least he has not been running a fever. We take all the small blessings we can get.

So, one step forward with shrinking tumors, but two steps back with no surgery and an illness slowing his treatment. We do try to celebrate all forward momentum, but setbacks can bring anyone down. We are finding that it is impossible to live the cliché, “live every day to the fullest.” No one can really do that. We are human. We have ups and downs. We do cherish the great moments that we have and celebrate the small successes. We continue to be surrounded by the love and support from friends and family and that keeps us going. We take the next step in our journey next week as we get back into a house of our own. Thank you all for being there for us!

With Fierce Hope,

Amy

The Tumors Are Shrinking

moving2This is very early word on my cat scan I that I received today. My tumors are getting smaller. The doctors will have to wait a few days for the “official report,” but they seemed very pleased. The other marker we look at is the CEA number. The normal number is between 1 and 2. When I was first diagnosed my CEA number was more than 1255 (yes, very bad.) Right now it’s around 136. This is all good news.

I can’t help but feel like all these prayers, well wishes and facebook posts are having an effect. I know it sounds corny, but when I am picked up by this storm of support, I can feel it healing me. People keep asking for a concrete way that they can help us. That brings us to some more good news.

The Ross family has FOUND A HOUSE! After a half of a year staying with Amy’s amazingly supportive parents, we have found a place we can move into that will give us the extra space and bathrooms that we need for medical reasons. My days needing exclusive access to a bathroom (we currently have only one for seven people) have been coming more frequently with the chemo. We have also been concerned about finding a house with a room that could eventually be used for hospice so that I am not parked in the middle of the living room for the kids to witness.

Amy had lunch with a dear friend and mentioned that we had worked out a budget with my social security payments and were ready to look for a house to rent. And just like that, God answered our prayers because our friend talked to someone she knew, and the perfect house in the right zone for the kids’ school, with extra bathrooms and a downstairs room that can be used for hospice, was out there waiting for us. So, for those of you that ask how you can help, here is the request. Our friends Jessica and Gary will re-launch our fundraiser HERE. These funds will be exclusively used to cover move-in fees (deposits, turning on utilities, etc.), a moving truck, along with some missing furniture and dishes we need to replace from our old house. We will also be happy to have moving help when the day comes (likely early May) since Amy won’t let me lift anything heavy or get too tired. Anything you can give or do will be greatly appreciated by the entire Ross family in making this transition a smooth one.

 

With Fierce Hope,

Jim and Amy

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

You can subscribe to e-mail updates HERE

A Visit to the Funeral Home

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

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

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

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

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

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

With Fierce Hope,

Jim

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

You can subscribe to e-mail updates HERE

10 Things I Fear – Fierce Hope

I’ve been told how open and brave this blog is. In the interest of national colon cancer awareness day, I wanted to share the deep fears I’ve had since finding out I have end-stage cancer.

galss frog

  1. Above all, I fear not seeing my children grow up. If my terminal diagnosis has taught me anything, it is to enjoy each moment. But those moments aren’t enough. Last night I saw a young girl talking about visiting college campuses with her dad and it really hit me. The shear volume of those moments that I will miss is astounding.
  1. I fear leaving Amy alone. My wife and I have a love that has lasted 17 years of ups and downs. I shudder at the idea of her being without me.
  1. I fear pain. When I was in the hospital with pneumonia when I got my diagnosis, I endured some of the worst pain and moments of my life. I had a terrible time with being intubated. It was like a long and inescapable nightmare that stretched into infinity.
  1. I fear that my children will forget me. Our twins, Hannah and Alison are 6 years old. I don’t remember anything from that age. Enough said.
  1. I fear heaven. That may sound odd, but no perfect place can exist that separates me from my family. I find the entire idea very unsatisfying. I don’t want to be hanging out on clouds with a bunch of angels. I want to be with my family in a real and living way. Not “with” them in just a spiritual sense.
  1. I fear I will give up. I’ve been congratulated many times for my strength, but few know how much I want to give up. The chemo makes me miserable and the idea of dumping it is attractive. The only thing stopping me is it seems to be working. If I thought for a moment it wasn’t, I’d be done.
  1. I fear missing the future. Sometimes I wake in the middle of the night and think about future events. The prospect of missing the “unknown” means I could pass away a few years before they cure my cancer. It’s a terrifying prospect.
  1. I fear hospice. This may have been a bad idea, but I spent several weeks after my diagnosis reading about what happens to the body as cancer of the organs shuts it down. It was grim and clinical and I don’t look forward to experiencing it at 42.
  1. I fear I won’t finish my projects. I’ve been writing a book. It’s hard to focus on these meds, but I keep pushing.
  1. Lastly, I fear the silence that will take the place of my life. A deep still silence around everything that I am. Everything that I’ve done. Everything that I own. Just the stillness of non-existence.

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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

Jim’s Top 10 Inspirational Books

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

 

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

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

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

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

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

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

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

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

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

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

  1. Letters to a Young Poet by Rainer Maria Rilke

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

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

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

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

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

  1. Spiritual Enlightenment The Damnedest Thing

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

  1. The Last Lecture by Randy Pausch

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

With Fierce Hope,

Jim

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

You can subscribe to e-mail updates HERE

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