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)

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.

 

 

 

awardpicMy 6 year old daughter, Alison was just named “Student of the Week” for her school. When asked how she earned the award, she told her grandpa it was for “being kind and stuff.” We all laughed. This is how a six year old sees it. In fact, her teacher wrote an amazing description of the way she is in school and she earned it for a number of admirable reasons.

After thinking about it for a while, I started to wonder. Why can’t “being kind and stuff” be enough? Here’s the thing; she is kind. But not like we think of it. She is kind in a way only an open and unguarded six year old can be kind. Alison has grace.

If I’ve learned one thing while battling terminal cancer, it is that grace is not a destination. It’s not an object. It’s not a noun. Instead, grace is a means “of travel.” Grace: a strategy for engaging the world. Grace is a “how,” not a “what.”

Grace is a choice we make before we ever pick up our iPhone or walk into a restaurant to have lunch with friends. Grace occurs in the quiet moments before we speak or act in the world. Alison knows that. She may not say it like I do, but she doesn’t need to. She’s already got it.

 

Other Updates

FullSizeRenderI spent last week visiting with my sister, brother, and mom in Fort Lauderdale, Florida. This was also my first week on the new drug that I requested be added to my chemo regimen. That along with a few other drug changes had me feeling very nauseous 24/7. So, I returned feeling disappointed that I couldn’t spend much quality time with them. My wife reminded me that the doctors told us when our girls spent 64 days in the NICU that it would be like a roller coaster. We would have many ups and downs. Cancer is much the same. That roller coaster idea had me awake a lot last night. The reason is that last station for the NICU roller coaster was a triumphant walk out of the front door of the hospital. The last station for a person with incurable cancer is death. What I do each day the moment my feet hit the floor in the morning is a say a little prayer of thank you. I just say, “thank you for giving me one more day.”

I do think it is impossible to “live every moment to the fullest.” Even with a death sentence hanging over your head, you just naturally slip into moments of fear or despair. Instead of trying to live an unattainable cliché, I like to say that I am better at recognizing the important moments, and I live those to the fullest. Much like the earlier roller coaster analogy, I recognize when I am in an upward swing and I act to seize that for everything that it’s worth. Simple things like going to the mall with my wife on a day that I am feeling good is an example of making my days count.

Each of us has four or five critical moments in every day that we live. Maybe it’s a moment a child asks us a question. Perhaps it’s a moment among trees and songbirds just before we walk into work. It doesn’t matter. What matters is figuring out what those moments are, and living them with our fullest abilities. Another person’s life-course may turn on an offhanded comment we make. I encourage anyone to find those moments and shine. And don’t forget to “be kind and stuff.”

 

With Fierce Hope,

Jim

 

P.S. A huge thank you to everyone who purchased a fierce hope t-shirt and shared selfies on Facebook. It really lifted my spirits during a rough week. My sister Jen helped us out by extending the t-shirt campaign for those people who asked if they could still purchase one. Use this link if you’d still like to order. The last day to order is February 18th so that they will arrive in time for Colon Cancer Awareness day on March 6th. I’d love to see all of those selfies posted again on that day. Thank you so much for your continued support and love!

little jim

IMG_4218Last night was a little Christmas miracle just for me. I mentioned last week on my bucket list that I wanted to make it to opening night of my daughter’s Totem Pole Playhouse debut of “A Christmas Carol.” I made it! Madelyn was incredible!  I was so proud of her.

As I sat in the audience, it was such a bittersweet moment of pride. Here I was, watching my nine year old shine in a professional level theatrical performance. Her dancing was magnificent and she has a presence that lights up the stage. But I couldn’t help imagine her lifetime of shows stretching out years and decades in front of her. Would I be in attendance? Will I be able to watch her blossom as a young performer and person? What about my twins? They love to perform already at just age five. Will I miss ovations and flowers during all of their lives?

As some of you know, theater played a big part in my own young life. I was in nine plays by the time I graduated high school including playing the lead role of Curly in Oklahoma my senior year. I went on to major in theater early in college and had some of my most memorial experiences on stage. Performing shaped who I would become just like it shaped my mother and aunt’s lives as well.

Madelyn inherited her thirst for applause honestly. But in many ways, she can far out accomplish any of us. In just fourth grade she can already sing, dance, and act with a technical prowess I didn’t posses until I was 18 or 19. The sky is the limit for my little girl. I want to be around for every performance and every closing of the curtain. However, the terminal diagnosis is ever present. It also shapes the direction of my life and the choices I make.

Sometimes life requires us to grow into new skin, much in the same way that a snake does. My wedding ring no longer stays on my finger. I’ve lost so much weight from the cancer and chemotherapy that it slides off my finger now. It makes me feel like a man slowly disappearing from the world one fraction of a pound at a time. Our plan is to get it re-sized and renew our vows on a mini-vacation someday, maybe.

But as for today, I plan to soak up all the joy and gratitude that I’ve gained from seeing my little girl, shine like a true star.

With Fierce Hope,

Jim

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little jim