gold

10 Ways to Stay Gold

I gotta admit, being told you have incurable cancer sure can change what you think about. Death has a way of getting your attention. The small stuff no longer bothers me. It feels like a lightning bolt of truth in my life. I thought I’d create a list of ten reminders for people that may help to share what I see.

 

1. Never forget that every atom in your body was forged in the furnace of an ancient star.

2. Never forget to be the best listener you know. Really HEAR people. Not just their words but hear that primal message we all emote.

3. Never forget that God may be a woman. I often wonder if Her essence was always more feminine as She gave birth to everything.

4. Never forget that you affect everyone around you all day. Are people better or worse because of your influence?

5. Never forget that arguing politics never made anyone happy. The need to be right is an insatiable black hole.

6. Never forget that young children are pre-programmed to love. Their default setting is joy. All the sadness, envy, despair, and hopelessness is acquired.

7. Never forget that you may have less time on this earth than you thought. Say the hard but true things, take chances, and always challenge yourself.

8. Never forget that you are suspended by an invisible web of love. The people who love you connect with each other and that love is multiplied.

9. Never forget that pride has destroyed more lives than any other emotion. Sometimes we can be blinded by our own stubbornness.

10. Never forget that we are all children on the inside. We are are all standing in our lonely little backyards, waiting to be joined by friends.

with Fierce Hope

Jim

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

jimkidsFinding the Silver Lining

Amy here to give an update on Jim. Yesterday he had a follow-up CT scan to see how the chemo is working. If you’ve been following our journey, you’ll remember that his last scan brought good news of shrinking tumors. Unfortunately, yesterday’s news was not as good. The tumors in his liver (the main area of concern now) have gotten slightly larger. I guess we weren’t totally surprised since the blood-work at his last visit showed that his tumor markers were creeping back up. Still, this news is hard to swallow.

The plan of action is to finish this round of chemo (yesterday’s treatment and the one in two weeks). Then a break for the next two weeks. We meet with the Dr. again on August 12th to discuss a new treatment plan. It will still be chemo, just a different cocktail.

Like I said, hearing that the tumors are growing is very scary. In general, Jim has always been the “glass half full” guy, and I am the pessimist. But I’m trying. I’ve found through this ordeal that I just have to keep going. I don’t have time to wallow. My kids need me, and of course, Jim needs me. So, as we digest this news, I am looking for silver linings.

The first positive outcome of this turn of events, is that they are reducing and then removing the medicine in the chemo cocktail that is causing the neuropathy that has been giving Jim such bad pain in his hands and feet. The nerve damage can be permanent, so he will not be totally pain free, but taking the med out should give him at least some relief. Hopefully, that means he can get back to doing more of the things he likes such as taking more walks, working on his book, and playing with the kids in the yard.

The second thing that I am happy about is the break he will get from the chemo before they start the new regimen. We are set to celebrate our 17th wedding anniversary on August 1st (and our daughter is performing in a play that day). Had yesterday’s events not occurred, I would have been driving him to the cancer center for a shot that day, and he would have been feeling pretty crummy. So now we can enjoy our daughter’s performance and then maybe we can have some time just the two of us to celebrate our special day with him feeling good.
So, I’m trying my hand at this “glass half full” thing, and hopefully with the new meds the next scan will have my cup running over.
With Fierce Hope,
Amy

(photo credit goes to First Moments Photography, 2013)

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.

daddyNot Thinking About Things

One thing I’ve found is I spend a lot of time trying not to think about things. This seems pretty unhealthy but it’s become unavoidable. I’m watching a TV commercial and a mom says to her daughter at graduation, “your dad would have been so proud of you,” and I can spend the next hour trying to block it out. I push it away. I try not to think about it. But as anyone knows, that makes it grow.

You’d be surprised at how many movies and films start off with the death of a parent. Especially kids movies. A parent always dies in them. I hate the uncomfortable feeling we get with our kids when those scenes come up.

The world becomes a minefield of painful reminders that I am dying. The only other alternative is to get myself convinced that 12% of the people with my cancer live past 3 years is a good shot. Those odds, no matter how I play around with them are daunting. The other frequent reminder is the deterioration that is going on with my hands and feet.

The chemo drugs seem to be working and shrinking my tumors. However, they permanently destroy the nerves in my body starting with hands and feet. Numbness becomes pain and the pain can make just sitting still hard to do. Some days I just crave to be asleep to avoid the discomfort. But I also don’t want to nap my life away if I only have limited time.

On Friday I got my 14th treatment (2nd round of the 7th cycle, in medical terms). Most people get a well-earned chemo break at 12 treatments, but because of how far along my tumors are, I got to start the next 12 ASAP. I can see why people skip chemo and just give in to the cancer. It’s a seductive choice when your hands feel like they are burning up for weeks at a time. But I have so much to live for.

I also try not to think about my career. As most of you know, the cancer hit me right after starting a dream job. Some days I wonder if I should have stuck it out and stayed in the job. The health problems would have dominated my ability to function at work but I would have died doing work I love. The bottom line is, I have too much time to think or too much time to work on not thinking about my plight.

Medical Update: I had another doctor’s appointment on Friday. My tumor marker which had come down from the thousands to 107 (normal is less than 2), has gone back up to 117. Of course we’d rather it be headed in the other direction. The doctor set up another scan for me in July so that we can review my medical options again. It will be good to get the latest update on the spread and size of my tumors. As always, thank you for keeping me and my family in your thoughts. It means so much to us.

 

 

 

seed podsSpring has exploded here. Today I sat on our new back porch and waited for something to happen. It did. The first rule of spring is life. Everything is aching to live. Life is a gamble. We can’t have life without death. Embedded in each graceful seed pod that pushes its way through the air is the promise of finality.

I’ve been reading the book “Big Sur” by Jack Kerouac, and he keeps reminding me of that zen proverb that “everything is the infinite.” If he is correct then the forces of spring carry with them two realities. The first reality is the promise of death; that all that greets the world with this robust spring must pay the autumnal piper;  that fall is never far away. Fall is in our marrow. That is the finite.

But this post is about the second reality. That reality is that everything contains the infinite, and death is powerless over us. Birth is impossible because everything already existed. Ideas like grace go from being abstract concepts to being yet another shade of color on the palate of our consciousness.

Sitting on my back porch I become the perfect landing spot for seed pods. Each seed pod brings with it birth, death and infinity. Each pod is a promise of renewal. The lush carpet of hungry grass is so green it hurts your eyes. It is green in the way a newborn baby cries for milk. It is green in the same way a teenage boy asks the love of his young life to the prom. It is green with a grasp into both worlds. The finite and the perfect world of infinity.

The trees in our backyard battle each other for airborne real-estate. Their wooden fingers point upward in prayer, scratching the sky to be fed. Everything wants to live. I want to live. Everything is willing to fight to live. I am willing to fight to live. Everything is willing to endure the chrysalis stage to be born again. Maybe I need to see all the chemotherapy drugs as my long toxic sleep with dreams of renewal. I want to live long enough to paint the sky with my wet wings. I want to live long enough to emerge from the pupa stage and fly again.

I carry with me the promise of rebirth, death and most importantly the infinite. Nothing is born or dies in this last reality. I was here all along. Time is the illusion. My butterfly wings will echo into eternity. That I am sure of.

With Fierce Hope,

Jim

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

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