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.

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

Mother of the Year

IMG_5783I am looking for some kind of way to nominate my wife for mother of the year. Not only is she dealing with a husband who is dying, but she also finds time to do incredible things with our children every day.

I knew even when we met in college that she would be a great mom. She certainly has the education for it. Amy has degrees in both elementary education and early childhood development. So her resume was already stacked before we had any kids. But to watch her give up her days for our children every day is amazing.

Here is a small example. Just today she has somehow found time to do all the girls’ hair, take them shopping for birthday gifts for two different parties that they’re going to tomorrow, paint two dozen Easter eggs with them, play a board game with them, and still did their nails all fancy tonight. Who does all that? My wife.

The other reason I think my wife is such an incredible mother is because she has two great parents. That can’t be overstated enough. Both her mom and dad are smart and patient parents (and grandparents). That gave her a foundation for parenting that a lot of people don’t get.

Most importantly, she listens to our children. She gets right down next to them when they speak and gives them her full attention. You don’t see her on her iPhone plugging away only half listening to them (like I do sometimes.) When they talk she listens and it’s a moving thing to see. My wife plans every day with our kids sometimes weeks in advance. She juggles multiple birthday parties, choir practice, dance lessons, and play practices all in a single week. I am totally serious when I say I want to nominate her for mother the year.

If anyone knows anywhere that runs a contest like that, please send me a link because I’m going to get the campaign going now. What an amazing mom she is.

With Fierce Hope,
Jim

little jimPS: 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

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.

FullSizeRender

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

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

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