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

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bucketlistfinal

My Fierce Hope Bucket List

I’ve had a handful of folks ask me about my bucket list. I approached the entire bucket list idea with some trepidation. These lists often seem a bit selfish and self-centered to me. Often these lists can just become a mad grab at the world’s hollow experiences, and I didn’t want to do that.

However, the more I considered my own list in the face of this terminal cancer diagnosis, the more I understood that it could be used to give me something to focus on and force me to get healthier and out of the house to create a few more important memories.

If anyone has any contacts or interest in helping me achieve any of these things feel free to e-mail me at jim@fiercehope.com

Bucket List #1: Get healthy enough to play with the kids outside more. Right now my stomach pain and cramping is making just walking hard for me, but my hope is if doctors can get these side effects under control, I’d love to teach our girls to ride a bike and throw/ hit a baseball before I’m too sick to do so. This one is really on the doctors and what they can do.

Bucket List #2: Finish my book. I’ve been working on a book project that is a showcase of my photography, poetry, and inspirational advice for my girls. I do a little work on it every day but I need to finish it. This one is on me.

Bucket List #3: Be healthy enough to see Madelyn perform in “A Christmas Carol.” We have our tickets, but I’ve had to miss so many events with terrible stomach issues that I just pray that I get to see her in this. I am so proud of her and so grateful to Laura Martin for helping us make this happen for her. I just have to be healthy enough to make it to opening night. I will. (Just an update, I made it to this show and I was Ok. Madelyn was amazing!)

Bucket List #4: I’d like to see Europe before I die, possibly a train excursion from London-Paris-Berlin-Rome. I was a world history major in college and I still burn with curiosity about the places I’ve studied. Our amazing Disney trip with the kids was incredible, but not much of a “vacation” for my wife, with three little ones she was mostly in “mommy mode” caring for them. I think a romantic getaway to Europe (no kids) would be bucket list worthy. We’d renew our vows in Paris. I’m thinking this would require someone who has a friend at a travel agency to get it all set up, since its a bit complex, but if readers have any European travel tips or advice on off-season (February-Marh 2015) travel packages please e-mail me at jim@fiercehope.com

Bucket List #5: Eat at a Ruth’s Chris Steakhouse. It may sound crazy since I’m such a steak junky, but I’ve never had a steak at this place. We don’t have any near us but it stays on the list till I get it! (a special note on this one, I’ve been offered tons of help making this happen so this one can come off the list now, no help needed, lol)

Bucket List #6: Take my girls to Broadway. I’d love to take our kids to NYC over a weekend to see a Broadway show and stay in a nice place in Times Square for a few days to give the girls that real New York experience. They’d love to see Cinderella.  We are a family of theatre lovers so it would be great.

Bucket List #7: If I can survive until this summer, I want to take our girls camping. My wife, Amy hates “roughing it,” but I think if just daddy took the kids camping overnight (even in the state park near our home) it would be something they’d never forget. I just need to stick around till summer. Don’t get me wrong however, mommy would be welcome in the woods if she wants to come LOL.

Thats all of them for now, but I’m sure more things will creep onto that list as I grasp at straws to gleen all that I can out of life. Thanks for reading.

With Fierce Hope,

Jim

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