Now What

Now what?

This was MD Anderson scan week for me.  The blog is a little late because, well my appointments were at the end of the week and I had no way of knowing the results. I will share with you what I was going through on the way. There was a mix of optimism and worry.  And I was handed a bag of lemons. I’ll explain.

Family at the F1 event in Austin last Saturday

When I was first diagnosed I truly felt like I could be the outlier, shining star-miracle cure guy.  If it was tenacity and a willingness to do whatever it took…I was determined to be that guy.  Now I am painfully aware that cancer isn’t a game or a mindset or a weakness that has merely been exploited.  It is a tough mother f*&^%r that takes no prisoners. None.  In fact, another dear dear friend was diagnosed with stage 4 cancer this week and I hate it.  I like the fact that I can help people understand, cope, and possibly even ease their transition to a new type of normal (whatever that means), but hate that I’ve become good at something no one wants.

I was starting to feel good about my friend in the neighborhood.  Not that he has cancer, of course, but that I could help him understand first, that he wasn’t alone and second, give him some tips on fluids, proactive meds, etc.  To use a really bad example, it was like the Cuba Gooding Jr. character in What Dreams May Come. I say it is a bad example because in the movie, Robin Williams dies and Cuba is there to help him acclimate to heaven. I don’t want the end game to be a prominent part of the discussion, but it inevitably is.  So I accept my role gladly as a husband and father with a fight on his hands every day, and the responsibility to help my friends and family deal with their afflictions as well. 

Josephine (far left) at a pumpkin patch with her friends

Wednesday, I went and visited the kid’s school for lunch.  I was able to eat lunch with them.  My mother and I had a discussion about “the end” a few days prior.  She said, “Connor will miss you, but no one will really know how he feels for a while.  He’s much more reserved.  But I think Josephine will be devastated.  She will be inconsolable for some time.”  She’s right.  I had lunch with Connor’s class first and due to early release day they were watching an educational film in the classroom during lunchtime.  I asked if he wanted to watch the movie or go eat together in the atrium.  He said, “You can come to the classroom if you promise not to be a distraction.”  Josie held my arm like she was falling off a cliff.  She jumped at the chance to have a just me-and-her lunch in the school atrium.  She beamed that I had taken the time to come and be with her at school.  She went on and on about all red ribbon week, silly socks, etc. Unfortunately, I think mom nailed it.

This week’s symptoms were mostly nausea and acid reflux.  I have found two things that help me.  One is getting fluids on top of the normal chemotherapy.  I think it helps keep you hydrated (duh) but also helps flush out all that junk.  The second was a funny accidental find.  The nurse gave me the Avastin before the Oxaliplatin.  I have no idea if this is purely anecdotal or not, but usually those compounds are reversed.  However, this accidental order of operation seemed to reduce the nausea and almost eliminate the diarrhea over the last few weeks (I still take an Imodium with breakfast every day, but only one per day now).  So for all my cancer patient readers out there, if you are on FolFox, give this a try.  It might help…or it might just be me, I don’t know.  By the way, I’m one of those outliers who can taste the saline flush and I have the KRas mutation.  So take that for what it’s worth.

As stated, when I started this journey I had certain goals.  As the journey went on and the FulFiri stopped working, I readjusted those goals as any good strategist would.  So here I am, my numbers are improving and there is a trial available for me if/when the FolFox stops being effective or my body can’t tolerate it any longer.  My newest goals were somewhat short term.  The golf tournament/dinner to help the family, and then my life insurance policy to get them the rest of the way.  But now it looks like I might be sticking around a little longer.  So now what?

Well I’m still leery about booking a flight for a vacation in August, but I don’t feel like I need to pre-pay for a five-minute egg (thank you for the joke George Burns).  I feel pretty strong right now and I’m keeping weight on (probably too much weight).  My body looks better than it feels, but I’m able to take what has been thrown at me so far.  I don’t know where that puts me on the bell curve, but I do feel like not only will I make it to Christmas, but will more than likely be able to coach some baseball this spring.

A friend of mine ran into me the other day and said, “you look so good people are going to think you’re faking.”  Well I am cooking emcees like a pound of bacon! But he meant my color, and that I’m keeping weight on and don’t look like I’m withering away.  I asked the MDA oncologist about this and he said, “Well traditionally colon cancer patients don’t show their disease the way other patients do.”  I replied, “Until the end, right?”  He said, “Yes, until the end.”  I’ll take it. At least we have a visual indicator now, don’t we?

So here are the results from MD Anderson:  I’m doing well.  My liver, lung and lymph “mets” (lesions which have metastasized from my colon cancer) have shrunk a little.  There were new liver lesions that were found, but probably due to being previously hidden by larger lesions (cancer tumors) which had shrunk due to the medication.  The medication seems to be working and my CEA held steady in the 4 range.  My body is tolerating the regimen and the MDA team sees no reason to change it for the next few months and my next scan will be (barring any spikes) after the holidays.  So great news!

Baseball buddies at Patrenellas restaurant

We are getting ready for Halloween and as we prepare for the next few holidays and my tournament, I am filled again with hope and joy.  Thanks to Pete for riding down with me to Houston.  Thanks to BCC for voting for Connor in the Halloween costume contest I missed.  Thanks to Uncle Sammy for putting us up and feeding us like kings in the restaurant.  He also has these Meyers lemon trees in his garden.  He gave us a bag of lemons for the ride home.  How metaphorically perfect is that?  I was literally handed a bag of lemons.  Guess what Josie is making? And of course, thanks to God for giving me a bit more runway.

I got home in time to pick up the kids from school on Friday and then later that night I took Connor to a high school football game for his cub scout badge.  Just before halftime a sheriff and a security guy came up and started talking to the kids, who had all run up to the top row together.  Apparently, some of them were throwing things over the top rail. Ugh.  I called Connor over and he admitted that he had done it.  Well, at least he didn’t lie about it. One of his stronger traits.

Connor and I at the game

We left right then and talked about the incident on the way home. He felt very bad and was even more devastated that I was disappointed in him.  Now he’s not quite 8 and we all know kids are going to do stupid stuff together.  But my expectation is that at his age he can recognize that something is wrong and at least not participate.  At best (maybe this is 10 years maybe more) that he would have the confidence to tell the others to stop.  At any rate, I’m happy it happened and we could squeeze in one more lesson.  We have some work to do and luckily a little more time.

One last thing about my results and timing.  I don’t want to bring a joyous moment down at all…but!  This drug regimen and its efficacy…this is a containment strategy.  Think of stage 4 colon cancer like Michael Jordan.  You can’t stop him; you can only hope to contain him.  So again, there is no cure.  I am at peace with that.  But the containment is working for now and the oncology team is very in tune to backing off the regimen before the cancer gets resistant to the FolFox (which is what happened with the FulFiri). 

Peyton Manning football for the auction

My journey has been tough with plenty of ups and downs.  I have felt love like I never knew was possible from my friends and family.  I have opened my heart and mind and stopped being so judgmental. I have really enjoyed simple things that I had previously ignored.  There is a lot of beauty and kindness in our world…if you look for it.  So I’ll keep looking, loving, and helping where I can.  Who knows, maybe I still am slated to be that shining star-miracle cure guy.  Maybe this is my calling; this weekly reminder that God loves us, challenges us to rise above, and be strong in the face of adversity.  And perhaps to find not just hope but joy in those challenges.  Who knows what lies ahead?  No one knows, but if you need a hand, just reach out, I’m your man.  TeamMarco@austin.rr.com