What does victory look like?

This weekend was filled with cold, wet baseball games again.  I loved watching the kids, hated the coughing and wheezing, but loved the baseball.  The kids are improving a little, but having maximum fun!  That makes my heart sing.  As you are all aware by now, we called off the immunotherapy clinical trial and are back on the FulFox chemotherapy regimen, although this time at a reduced pace in diluted form.

Josie's teacher braved the cold to watch Josie's tee ball game

This week was a struggle as I felt my lung capacity shrink a bit.  It is crazy how much I took for granted even with the pneumonia.  At least then, I had coughing fits and no appetite, but I could walk up and down the stairs without having to literally stop for five minutes and catch my breath.  Let me tell you, that reduces your ability to do almost everything.  I went to pick up the kids from school the other day and walking from one end of the house to the garage, get in the car and back it out…I had to put it in park for a couple of minutes until I was back to slow steady breaths.

I know I still have mucus and should try to do more to cough it up, but it is hard when you feel like you are coughing and retching plenty during the day already.  You don’t really want to artificially invoke the loss of breath, hacking, spitting up lung phlegm routine when you can avoid it.  It is so much easier to try to keep your nose clean and dry while taking short shallow breaths.  I know it sounds counterintuitive, but walk a mile my friend.

Connor gets to speak with the APD helicopter pilot

Keeping your nose clean is key.  Once your nose gets congested or starts running, then you have to breathe through your mouth.  When that happens, any microscopic particle or saliva will (not might) WILL find its way into your airway, which you must then also cough up.  This creates the retching when your cough isn’t strong enough due to diminished lung capacity, to get it all out.  So you get a hanger which is half out and half in.  That triggers the gag reflex.  That makes your eyes water, which makes your nose run, which means you can’t breathe effectively through you nose so…you breathe through your mouth again, which pushes your little friend deeper.  Which means you have to cough more or harder to get it out.  Remember, you can’t just take one or two super deep breathes and be back in business.  You have about 2 full minutes of labored breathing to get to the new normal.  So, keep your nose clean and dry (should this ever come up).

These situations are not solvable with oxygen or inhalers. You just have to ride it out.  It is as distressing to witness for the adults as it is the children.

The kids are really REALLY aware of the situation right now.  We’re having a lot of discussions about death and next steps.  Watching the above situations too frequently possibly has led to these things.  At dinner the other night Josie asked if something happened to both of us what would happen to them?  We explained that we had wills and there were some nice families that we’ve spoken to that they would go live with.  Of course, we didn’t tell them who or the draft order, but hopefully put their minds at ease that at least there were plans in place to help them along every step of the way.

At dinner Wednesday night, we had some funny playful banter.  It was helpful because the normally rock solid Nita was a bit overwhelmed at this point in the day.  Well Connor is on a big game hunting kick.  He was asking how much it would cost to go on a safari to kill a Bengal tiger.  Josie protested and started coming back with some arguments around money, endangerment, etc.  Nita asked what the tiger was for?  Connor explained about making a rug, slippers, and the mount.  Josephine then stood up and said, “Nope!  Dad says we only shoot what we eat! And if you won’t eat it, you don’t shoot it!”  Checkmate.

The next morning, I heard Nita getting the kids ready for school while I was getting dressed to drive them.  She said, “Let’s go, keep moving forward.  If you are standing you aren’t moving.”  Now these are firm daddy lines. And they came flowing out of Josephine’s and Nita’s mouths. It truly made my heat feel like it was going to work out. The lessons I had been building were being solidified before my eyes.

I often worried about being forgotten.  Now, I’m not fishing for sympathy or outreach here.  I mean that I wondered if the kids would be too young now to fully remember me as an active fun dad, instead of the bump on the couch with the oxygen tubing.  When we came to stay with our friends in Houston, it turns out our host’s mother died of cancer.  He said the thing he remembered the most was missing her.  He also has this grandiose picture of his mom as a hero.  That was the magic for me.  The kids may not only remember me, but also as a hero before they hit that tween swagger.  You know the “I hate you, let me count the ways” phase. 

So it got me thinking about quality of life.  I figure this drug is going to do one of two, maybe three things.  Remember I can only take this drug for 1 year before it starts doing pretty severe damage to the host.

1.       We win, it works, nothing to worry about. Cancer free – low probability.

2.       It slows/halts the cancer’s growth, but does not improve situation.

3.       It works to reduce the lymph and lung growth, enough to catch my breath and actually play with the kids.

Regarding 1, Miracle time.  This is 1980 US hockey type miracle.

Regarding 2, I can live with it.  If I don’t improve, have my same daily challenges, but don’t get worse, I could live like this. In order to continue to be there emotionally and watch them grow up a bit more.  But I’d still have to endure the breath catching, coughing, retching, among other aches and pains.  No problem, I can die another day.

Regarding 3, ideal.  We won’t have to wait for the scan in two months to see where we are.  I’ll have the benefit to go out and actually be a participant in the family activities again.  From neighborhood get togethers, to kid's sports, to just taking them to the arcade.  I had no idea I was even taking those privileges for granted…but I do now.

I’m sitting in an infusion room here at MDA and I’m getting my ten to possibly eight hours of poisoning.  It is funny now that I was so looking forward to this.  Who looks forward to chemotherapy?  Certainly, no sane person. But I did.  So I’m hooked up with the meds flowing and I’m thankful. Thankful to still be here, thankful to have a chance, thankful for all I have already been blessed to see, hear, and do.

Addendum: after three hours of chemo I remembered why I never looked forward to it.  Oy.

So what does victory look like? Having your kids potentially remember you as hero?  That isn’t too bad.  Being given the chance to maybe spend a few more months or years (I promised I wouldn’t joke about this, but well you know) to be even more participative in the family?  Yea that is definitely a good one.  And being given one last chance to smell the roses and continue to inspire friends and family to do the same.  I guess that does smell like victory, or napalm.   I will win this fight, any way it works out.  TeamMarco.