The Secret Weapon

The secret weapon

So as mentioned before, chemo sucks.  It has gotten progressively worse, but the upside is it makes my off weeks feel that much better.  So much so, that I feel like I need to do more things in my off weeks which leads to my getting tired earlier, and kind of wearing myself out.  But I spend more time playing with the kids and doing the kind of stuff that matters.  To me anyway, hopefully to the kids too. I even lifted some weights the other day.  The numbers are improving and who knows, I may even be able to come off the meds that make me the most nauseous by March. 

The transition from last year to this year is ringing in some big changes.  Most notably from our insurance.  I have more experience now with the insurance game than I ever wanted.  Most of it is not pleasant.  Recently I received a letter from a third party representing my insurance carrier instructing me to call to prove that another company wasn’t responsible for my emergency room visit in August.  The one where I was diagnosed with cancer.  I called and explained, “Well I went to sleep and I woke up with cancer.  Who do you think could be responsible? Let’s go get those bastards!”  They said that the issue was closed and would no longer need information regarding that event.  So I guess that was a good enough answer for them.  By the way, my situation also helps with solicitation calls.  I usually turn it around and ask if they are interested in funding my campaign…ironically they are not.

A second awesome thing about the transition is that many carriers change policies with a hard cutover on January 1.  During this transition they actually count on customers and doctors’ offices not knowing 100% of the new rules and regulations so they can deny payment.  Believe it, because it is more than coincidental or anecdotal.  Thank God for all you cookbook and fund contributors.  I just learned on Wednesday that the Neupogen shots I was getting to stimulate my white blood cell count (so I could be healthy enough to take chemo and be in a room with my children)…is no longer covered.  Last year…no problem, and they worked.  This year, no dice!  I have to take a new derivative on Thursday that IS approved.  I don’t know if the side effects will be better or worse at this point.  What I do know is the shots I received this year, both of them…are not covered and were formally denied on a peer to peer review.  So I need to pay $950.00 for each shot.  Well Merry New Year Humana.  I’m going to be optimistic and hope that the new shot might have less bone pain…we’ll leave it at that.

Lunch during daddy daughter date last weekend

The kids are definitely different souls.  Josie is very in tune with what is going on with me (old soul).  She is very concerned and is always hugging me a little tighter and saying things like, “Please don’t die daddy! Promise you’ll get better, I won’t make it without you!”  How does one respond to that?  Connor on the other hand doesn’t really bring it up.  He’ll ask if my pump is in so he knows when to be careful and when to wrestle, but that’s the extent of it.  Nita has been taking them to Wonders and Worries and the counselors seem to be helping Josie a lot.  I think Connor is not quite ready to deal with it yet.  And of course that is fine.  But we’re concerned that it might be affecting him maybe a little adversely.  I guess we all deal with our things in our own time no matter what age.

Connor's new wrestling shoes, very Lowden Swain

Saturday night is going to be big for the family.  Connor and Josie will be getting to cash in their Christmas present from Santa.  Yes, we’re going to see Martin and Chris Kratt of the Wild Kratts, their heroes.  We have a pre-show play date with some neighborhood kids and then will do the meet and greet with Kratt brothers after the show.  I sure hope being in a theater full of children, during cold and flu season, with a new/untested (on me) WBC boost does the trick.  I will be pretty pissed if I end up in the hospital due to a policy change. And Lord have mercy on whomever is in the queue to take Nita’s call at Humana if that does happen.

 

Last Friday I was able to spend some time with a good friend who was in town for a comedy show.  I wasn’t able to play golf in the morning with him like we normally do, but we still had dinner with friends and then went to the show.  After the show we went to his hotel and had (coffee for me) cocktails and told 20 years’ worth of stories.  It was fantastic.  There is another friend who went with me who still tears up when we’re around or when he talks about me.  I guess I’m mostly cried out now.  Is it weird that I have accepted my fate?  Don’t get me wrong, I am still praying for a miracle and I don’t want to shove off quite yet.  But it no longer makes me sad when people talk about their children’s acceptance into college, marriage, or grandchildren. I know that unless a MAJOR breakthrough comes out in the next five years these are events I will never experience.  So I try to make today count.  Connor has even introduced snuggle time into our nighttime regimen. We spend two to five minutes just snuggling, giggling, tickling, or just being silly.  Same with Josie (the consummate copy cat). They are both playing a game on their IPads that gets increasingly difficult.  When they cannot beat a certain level they come to me and I show them the logic to win.  They both now call me their “secret weapon.”  I hope that sticks.

Remember that guitar from Christmas? A buddy came over to show me some guitar chords this week.  He even taught me a two chord mariachi song. After about an hour my fingertips were pretty sore, and the neuropathy compounds that with the sensation that makes warm water feel like boiling water.  So I have to space out my practice time, or just plow through it and hope callouses are immune to the sensation.  I’ll have to ask the nurses this week when I go in for fluids.

I suppose the net effect is I’m doing okay, and God showered us with gifts just in time for us to need them.  So that is a pretty good deal all together. I am NOT looking forward to Monday and starting all over again, but I can take it.  I had lunch with my SEAL buddy this week and we were talking about it.  I made the analogy that chemo week is like any other timed exercise or drill.  You know it is going to suck, hurt, and challenge you…but when the clock is up, you’re done.  My clock goes from Monday – Thursday of chemo week…but it is finite.  So far.  But that is okay, because the first time is the hardest.  I know I can take it and get through it.  The rest is just counting hours.  Not so bad when you really break it down to the core components.  Very much like the “just keep swimming” post.  We talked about the TEAMS and being in firefight. You trust your guys to do their job, so you stay in your lane and get it done.  So that’s what I’m doing, just staying in my lane and getting it done.  I’m sure we’ll have big and small issues with the insurance company but we’ll figure them out.  My father used to always tell me, “Any problem that can be fixed with money isn’t really a problem.”  Smart guy, that secret weapon of mine.  TeamMarco@austin.rr.com