Making the death list

Making the death list

What a fun (short) week.  It was filled with sickness, anticipation and planning (more than one kind).  Nita and I are heading to New Orleans Thursday and everyone is excited. The kids are excited because even though they are staying in the house, the grandmothers (and mother’s helpers) are going to be staying over and well, the rules just aren’t as stringent when they are around are they?  As much as we mandate certain things, chores, and duties…grandmothers will follow a general guideline but will err on the side of what is most fun for the kids. Also they are getting over a little bug so their energy is back at a high level.  And I no longer have to avoid them around the house.  It is always awkward when the kids catch something.  I want to love on them and play with them but I have to look out for my immune system, and of course we can’t be “those parents” who endanger other kids just to get them out of the house.  Luckily, by Monday they were both back on track.

Tuesday, a friend brought me a new (to us) couch for man cave. It was one of the stadium seating fancy couches with the drink holders in the arm rests that I’ve always wanted.  For obvious financial reasons it wasn’t on our priorities list.  But a friend found it at giveaway pricing and borrowed a truck to haul it over.  We put it together and it was one of the best MLB All-star games ever.  Fun family movie night will take it to another level next time.  The kids are in love with it and everyone is “claiming their seat.”  The only one who is not a fan is our dog who now has little barriers to navigate instead of crawling all over people.  She’ll figure it out I’m sure.

The new couch was also part of a decluttering movement that we are doing around the house.  We’re getting rid of toys the kids don’t play with anymore, some furniture that is on the 2 year rule (if you don’t use it in 2 years you don’t need it), and other things to open up the house a bit more.  Eliminating clutter from your environment is a very calming exercise.

My blood tests revealed that I was healthy enough and cleared to travel to New Orleans (no CEA score this time).  I still have to be careful, but I don’t have to wear a mask on the plane.  Speaking of blood tests, my oncologist and I spoke about what the next steps should and will be. It was decided to do one more round of FulFiri chemotherapy on Monday.  Even though it might seem as though it “isn’t working” he believes it may be containing the original cancer while perhaps there is a new strain that is elevating the CEA scores.  Due to these concerns, he and his head nurse did their magic and were able to push through an accelerated appointment to MD Anderson for the week of the 25^th.  The equipment there will be able to tell us more about what is going on with both the cancer and the efficacy of the original drug regimen.  I expect to have a new or modified protocol, as mentioned last week, and they can start testing for clinical trials should this second regimen not work or lose traction.  I also have a feeling that I may not be able to dodge the “optional” rectal contrast (radioactive dye) portion this time.

During the All Star game a friend sent me a “funny or die” link about a guy who made a list of demands for his funeral.  As those of you who are familiar with the funny or die folks probably guessed, it was edgy and funny.  It also inspired me to do something very similar given my dark sense of humor.  I’m not going to ruin the surprise, but it might show up on the one year anniversary of the diagnosis/blog in order to sneak into the book.

I showed the story with the funeral demand list to Nita and we laughed heartily together.  She then said, “You know honey, you may want to make a death list.  Those last moments should be about what you want and need, not a free-for-all.”  Wise words indeed.  If you remember her father died of pancreatic cancer and hospice helped him at home.  When he passed it was just he, Nita, her mother, and two of his best friends.  It got me thinking.  When I get the message: “You have hours or days, get ready,” who do I want there with me?  I obviously want to see the eyes and faces of my children, mother, and wife to thank them for taking me to a happier and better place than I could have ever been without them.  If I am still capable of speech, I will say it out loud.  If I am not, Nita, please remember this part and share it.

It also triggered a memory of attending a funeral when another friend died of cancer a few months ago.  I blogged about it as well and remembered thinking about this very thing.  I don’t necessarily want a circus or a rave going on, but what exactly am I saving my energy for?  A nap?  When you are hours away, what difference does it make if you are tired?  So back to Nita’s advice, she said, “Who do you really want to be around you in the final moments?  There are probably a few folks who will feel obligated to come and perhaps even people who think they should make an appearance, but we don’t have service for 100.”  She’s right, besides the cards, letters, calls, emails, etc. have all shown me how much love is in my life.  It isn’t a contest and no one is grading this.  And from the bottom of my heart, thank you.

The kids will be somewhat confused I’m sure, but they also don’t need a ton of people milling around waiting for their turn, making nervous chatter, etc.  Plus, although it would be nice to say goodbye to some of my friends who are no longer in Austin, it would be pretty selfish to ask them to fly in and then stay or fly back for a funeral days later.  So we’re being pretty practical about the list.  Don’t worry, no one thinks this is an imminent thing, we’re just planning.  Dad always said, “It’s better to have it and not need it than to need it and not have it.”  Besides that miracle may come any minute and we can all have a good laugh at this right?

So I made the list.  It has about 20 people from different chapters of my life who I want to personally thank before I drift off.  If you are not on the list, it is not a slight and there is no ring kissing, torch passing, or sharing of some secret wisdom.  This isn’t a party, these are my last breaths and moments on the planet.  The funeral and reception will hopefully be a party.  I will write something witty for someone to read that will hopefully have people laughing, remembering, and sharing Marco stories of their own.  I really want to be remembered as a pretty fun dude who had his heart in the right place, but of course made a bunch of stupid mistakes.  This isn’t an ego piece, it is just about planning and logistics.  And please don’t ask Nita or me if you are on the list.  It isn’t a contest.  Although… we could have a raffle for one lucky person to get added to the list?  Okay, that was shallow, forget that idea.

If for some reason on our way to New Orleans the plane goes down or we run into some protesters going crazy, our wills are in the fire safe.  Thanks in advance for everything and all the appropriate arrangements have been made.  You were probably on the list. ;)

So on to New Orleans, we have reservations to two really nice restaurants for dinner and we’re so very looking forward to this trip.  Nita and I have both been but never together and I already feel like the trip is going to be too quick.  I’ll report back on what, where, and how we did.  But Nita and I really do need this time together and God knows she needs a break.

Did I mention how awesome our neighborhood is? We’ve already had four families volunteer to host play dates for the kids to give our 80 year old mothers some breaks during our quick trip.  We’ve even had some “security” volunteers, which is awesome.  In fact, the kids are getting so excited over their invitation list that they just might beg us to go on another trip.  It’s just like that Berenstain Bears second honeymoon book.  So here is to living life moment to moment and taking nothing for granted.  God bless you and be safe.  TeamMarco@austin.rr.com