Isn't it funny how many lessons start with kid sports?

Isn’t it funny how many lessons start with kid sports?

Connor’s baseball season has been a lot like my chemotherapy and cancer battle.  We were ready (we though) in the beginning.  We worked hard through the season and then were dealt a setback.  Both of us had some fear to overcome and some adversity to battle through.  Neither of us gave up or gave in.  After watching Connor deal with his issues, I am feeling a lot better about things.  I think Connor is going to be okay.  And of course I’m going to stand in the ring and keep taking punches for as long as it takes.

Tuesday night I had to watch his game from my car behind the fence.  I had a needle in my chest and a pump with poison.  It was probably not a great idea to be around a bunch of hyper kids.  I did however get to take some pictures of Connor’s first ball in play.  He didn’t get a hit, but he put it in play and was thrown out at first giving tremendous effort.  In the end that is all we ever want from our kids isn’t it?  Perfect effort does not mean being perfect.  Give us the effort, the rest will work itself out.  Connor gave me that gift Tuesday night.

After the game I came home still reeling from the full chemotherapy treatment.  Connor came up to me with something behind his back.  I asked, “Did you get the game ball son?”  He said, “No dad, you did!”  The team decided to give me the game ball tonight.  They also gave a second ball signed by all the players.  I had no idea how much that would mean to me, but here I am weeping again typing this.  Truly the littlest things mean the most don’t they?  Thank you God.  Last year my mother found an old box of my father’s things.  One thing that stood out, and for some reason I kept in my office, was a ball from exactly 40 years ago when he coached my 7 year old team.  It was crazy that she had kept it that long and had decided to give it to me then, before all of this had transpired. I immediately ordered a trophy ball holder for mine and will proudly display them side by side.

My father's ball from 1976

Monday I pushed the chemo schedule in order to pitch Connor’s game…which was rained out.  So the game slid to Tuesday which was my new chemo day and with my CEA scores racing up the charts and a scan that showed it wasn’t a misread…it was time.  So Tuesday, I started my regimen again.  I wish I could say it was like riding a bike, but I wasn’t sure what to expect.  Did my body have enough of a break that it would feel like day one treatment chemo? Treatment five or treatment 10?  It was closer to eight I think. The benefit of hindsight and experience did help me remember to be proactive with my side effect meds.  It is definitely better to be proactive than reactive in these cases.  Although full disclosure, I did forget a few things which meant I had to suffer until those meds kicked in.

While in the office with my oncologist we discussed the recommendation tree (step by step – timing and order) from MDA.  This news wasn’t as positive, but we’ll stay positive anyway.  As it turns out the other two protocols that have become available are not as successful…and they aren’t as subsidized by insurance.  In fact, the next one on the list is a variation of what I’m taking but it is a short term protocol due to its toxicity and long term neuropathic effects. The one I’m on, again, has about a 1 year recommended cycle time (not to exceed) due to the toxicity and the long term effects on the body.  The other two new ones are pills (no pump), but they are not as effective as the first two…and they cost 12K per month.  You read that correctly.  Luckily Nita’s Avon business is starting to kick up a bit…not 12K per month, but you have to start somewhere right?



Josie's game Saturday was rained out, but they still found a way to have fun

Wednesday was slightly better than Tuesday and I was able to eat lunch and dinner.  The nausea and diarrhea are back.  By Wednesday evening and on into Thursday the thrush returned and luckily I still had some of the Constanzi’s solution in my fridge.  All the greatest hits are returning, but I’m more prepared than I was the first time around, that is for sure.  The rain came down in sheets on Thursday morning which actually helped me.  My pump was removed and was given a bag of fluids, and an extra day to recover.  Connor had a game scheduled for Thursday evening and I could use the extra day of rest to be honest.  I could have pitched, but I would have been nowhere near my best, and maybe even a hindrance.  I felt a little more tired this week, and I guess most of these things are the irinotecan kicking in. One thing for sure, I should be more thankful for the minor break in the chemo, but goodness it sure didn’t seem long enough.

I am going to stay positive.  There are slumps in every season and there are hot streaks.  We’ll see what happens over the course of the next year and perhaps there will be a new regimen I can try.  Then we’ll maybe give the pills a couple of months to see if they move the needle and finally we’ll sick Nita on MDA for clinical trials if possible.  Our insurance company wouldn’t pay for the genetic testing to see if my tumors would react favorable to the existing trials because “we had not tried the gold standard approach yet.”  That is certainly behind us.

Oh and on a positive note, it turns out the mother of one of the kids on our team is a writer.  She has offered to help point me in the right direction towards getting a book compiled and potentially published.  So that is kind of exciting.  I think we decided that it would be based on the first full year of experiences.  We still have a few more months of “data and experience collection” to go.

After having a full week to reflect on my MDA scan and blood results, I feel a lot better.  When you really think about it, my lung tumors returned to the original size from December, and my liver tumors continued to shrink.  But there was no spread or new tumor growth in either organ or to other organs, and the lymph system was clean.  Those are very positive results for a person in my condition.  Put another way, it could have been a LOT worse.  But it wasn’t, thank you prayer warriors out there.

Had dinner with an old USMC buddy and he let Connor hold his parade sword

Again, I think we still have some time here.  I just need to gut up and plow through my three days of tribulation every two weeks, recover enough to do fun stuff with the family and we’ll see what happens. I’ve mentioned it before, God has carried me (sometimes dragged me) this far, why would I feel like he’s done with me now?  I don’t.  I don’t know what the future holds, but I have today.  So we’ll just make the most of it won’t we? TeamMarco@austin.rr.com