Is That You Vanity?

On the way to Houston this week, Nita and I had a really good talk about things.  You know we’ve already done the pall bearer list, funeral arrangements and the full monte on that stuff.  This was about how I’m feeling, the risks with this chemo, and summer planning…which really kind of launched the whole thing. Having a cousin in the funeral business also makes things a lot easier.  Much of what needs to be done is already planned and can be solved by an expert if it wasn’t.

I did not get the chemo today.  I messed up.  Prior to my infusion, I was supposed to take four doses of Prednisone, one every six hours, the day before leading up to just a few hours before the infusion.  I failed and forgot to take one dose while we were driving to Houston.  I realized I had missed my 6pm dose around 10:30 and wasn’t sure about taking it then and then another at midnight to “catch up.”  Well I’m glad I didn’t because Dr. Kee cancelled the chemo today.  When I told him first thing about my omission, he promptly said, “let me go talk to my pharmacist, but I don’t think we can proceed today.”  He then reminded us about the severity of not taking this drug correctly or out of order…more than once.

I’ve alluded to these things in previous blogs, but here is the straight dope.  Oxaliplatin can help me and it can kill me.  The reason the doctors are being so cautious about where I do the infusion and steps leading up to and during is for exactly those reasons.  If for any reason I have another reaction that they cannot knock out quickly and further dilute the Ox and continue, then it is over.  By that I mean, if they have to stop the treatment midstream they can never go back to it again, it is gone, poof, it can never be revisited.  We are then left with very few options.

Why would they stop the treatment?  In addition to a mildly annoying rash which can easily be fixed with hydrocortisone and Benadryl, it can cause breathing issues.  And we all know how I need more of those right?  Well, as Nita and I were talking about the risks, end of life wishes (hospice, etc.), and medical power of attorney type stuff, we broached the “what if the Ox takes me out and puts me on a respirator” conversation.  I told her that if there was no way out, to keep me hooked up long enough to drive the kids and my mom down to say goodbye, then pull it.  I’m not judging for anyone else, but I’m barely useful now, much less laying in a bed unconscious and unable to breath for myself.  So there’s that.

So, the good news is I’m still here, and chemo has been rescheduled for Wednesday.  Then we’ll push another few days because there is a surprise trip for the kids we have planned for the day school lets out.  Shhhhh, don’t tell them, they have no idea.

I think I have/had another lesson to learn during this test I am currently experiencing.  Vanity.  I know it sounds weird since I don’t really care that much about fashion, gained too much weight, and I didn’t freak out when my hair was thinning and we had to shave my head.  But oddly enough my muscle mass has really been bothering me, to tell the honest truth.  I didn’t think it would, but then again, I didn’t anticipate it going like that either. 

Josie and her game ball and my small arms

A couple of years ago, arms aren't huge, but certainly bigger

If you’ve been following for over a year you have heard stories about my sports, life in the country, and other little things that have led me to be a stronger than average type guy.  I wouldn’t classify myself as a meathead or a gym rat by any means, but I was a pretty strong dude – kind of country strong.  I had big arms and legs (from wrestling and catching baseball) and they served me well throughout the years. 

When Nita and I traveled, I could pretty easily hump all our gear wherever we were, elevators or not.  On our honeymoon in Italy we stopped in Sienna for a few days.  We stayed at this lovely B&B called the Antica Torre (antique tower) and since it was our honeymoon they put us on the fifth floor with a view of the Duomo.  However, there was no elevator.  I had no problem dragging our luggage up the five flights, but our poor hostess, who insisted on helping with the luggage, wanted to take a break at each landing.  It was funny at the time.  Now I probably couldn’t make it to the top floor carrying a pillow.

That being said, I have had a hard time watching my body transform to, well I guess the best description is wasting away.  I have loose skin and stretch marks where muscles used to be.  I had to buy some new shorts because I have no ass anymore.  My old shorts won’t stay up.  My calves which used to be huge look like a freshman cornerback who runs a 4.4 (for you non-sports people, defensive backs usually have tiny skinny calves).  I suppose this is another of the lessons I needed to learn.  I wondered why some of the women at chemo camp had such a hard time with the hair loss, but I wonder no more.  I guess we each had our own thing that we valued as a good part of our bodies and when it leaves it can be traumatic.

My buddy and meathead Pete came by the other day and acknowledged the loss of mass.  He said, “Dude, your face is skinny and handsome, but good Lord your arms and legs are spaghetti.”  He also said that he was talking to some new team members at work and mentioned he was coming by to see me.  He mentioned my name and they said, “The Marco Martinez who writes the blog?”  He affirmed and they were amazed by the coincidence.  So it’s not quite a Kevin Bacon type of six degrees, but maybe two or three.  It is crazy how many people are reading and following the story.  Thank you all and God bless you.

I receive quite a few notes from folks cheering me on or telling me that my blog has helped them in some way.  That not only makes my struggle easier to continue, but it is quite flattering.  One of the more amazing notes I got was from one of my Aggie Yell brothers.  In his own words, “Whenever the time comes, and my hope is that it is far far off, I will make the trip to Texas A&M on April 21st and say "here" for you. I have a strong feeling that many other voices will ring out together.”

A&M has a tradition called Muster.  It honors the dead former students, and friends and family in attendance say, “here” when their name is called during the roll call for the absent.  While we were at Nita’s uncle’s restaurant Thursday night, he was talking about a friend of his who was just inducted into the A&M hall of honor.  He mentioned the white corps uniforms and it reminded me of the note my Ag brother sent me.  I started tearing up and couldn’t stop.  I finally got a hold of myself and told Nita the story, which of course made her start crying.  We then drove to Beer Donkey and Kat’s house for the night.  They again generously put us up the night before my appointments in Houston.

This past weekend we all were privileged to witness Connor getting his first communion.  He did wonderfully and was very patient during the mass.  His Godparents and grandparents came to watch him and he was all smiles during and afterwards.  He now has three steps into Catholic Church and is doing well, although he’s quite relieved that he doesn’t have to attend RE (religious education) classes for a while.

Connor after his first Communion

This weekend Josie had another baseball game.  She actually received another game ball.  She was so proud and is really falling in love with the game.  She is becoming the kid I was.  You know the kid who puts on the uniform a little earlier than necessary, wants to wear the jersey a lot, and generally loves being on the field.  She even complained that practice wasn’t long enough.  My girl!  She also lost two teeth Thursday, one I got to see before we left, the other came out while she was brushing before bed.  She’s growing up!

So how am I feeling?  Here is the thing.  I don’t want to get anyone ginned up or artificially excited, but I feel better.  I think either the Oxaliplatin is working (yes even after one dose), or the pneumonia has finally purged.  My coughing fits are fewer and farther between.  My shortness of breath seems to come back sooner (shorter duration for recovery).  My appetite is mostly back and my weight freefall looks like it has leveled off and is holding steady at 60 pounds over the last two weeks.  I am actually looking forward to another dose of the Ox, but of course we have to do it right and not risk doing more harm than good.

I am hopeful, I am optimistic, I am confident.  I’m not sure if we’re turning the corner here or if this is one last hurrah that God is allowing me to experience with the kids over summer.  Either way, I am living for now and my family.  My friends threw a surprise birthday party for me last Saturday and it was pretty awesome.  In fact, I was singing happy birthday looking around for who the poor sap was until I discovered it was me.  Mercifully there were only four candles and I was able to expunge them with a single breath.  It was a great and fun night.

So we keep moving forward and continue the fight.  Of course it isn’t easy, but what in life worth having is?  And for the record, what is more a part of life than actually being alive?  That is what I am fighting for and my lovely wife actually thanks me frequently for fighting so hard to stay above ground.  As we were having our talks yesterday, from medical power to the Aggie Muster, she asked me, “Honey, is there anything you want to do?  Anything at all?  Let’s make it happen.”  It was straight from Caddy for Life the Bruce Edwards story (Tom Watson’s caddy – I blogged about it a year ago).  And I answered the same way (mostly).  I said, “Honey, I’ve done it.  I have the beautiful family I dreamed about.  I have the best friends in the world.  I have everything I need, and many things I don’t.  I’ve seen a lot and done a lot.  There is nothing more I need to see, do, or experience.  I just want a little more time with y’all.”

The book will become a reality.  A friend has put up the money for a publishing house called book in a box.  I am currently working with them and we should have a product in both paper back and available for e-book download within a couple of months.  It is fun and exciting.  For those who hoped that the second-year blogs would be part of it, unfortunately there isn’t enough time to condense, rewrite for a book read rather than a blog read, and compile.  Plus, it is fluid in that there is new material each week.  So, maybe Nita will put whatever is left over and have a second book created if the first one does any good.  In any case, I’m pretty excited and I feel useful again having a goal locked in.

Thanks to each and every one of you who take the time to read.  I’m sure you are busy with your own lives and even though it is about a five-minute read, it still takes away from something else you could be doing.  It saves me a lot of time re-explaining what is going on and honestly it is therapeutic for me as well.  The few hours it takes me to write, edit, and post are more than worth it.  So thank you.  I can’t help but think good things right now.  I know it sounds crazy especially in light of the fact that Nita and I had such a morbid talk on the way to Houston and we left without any chemotherapy; but I feel better.  I feel alive, and I think acknowledging my vanity is a good step toward letting it go. 

Plus no Ox means no cold sensitivity and I’m drinking a bourbon right now! ;)  So grab your drink of choice, enjoy your weekend, love your family, and do something amazing.  And that something can be anything that makes you or your loved ones happy.  Happy Mother’s Day to all you moms out there. Thanks for putting up with all the abuse, changing the diapers, feeding us, keeping our laundry done, and the thousands of thankless tasks that go unrecognized 364 days a year.  May you all have a wonderful and safe weekend.  Thanks for giving me another five minutes in your lives. TeamMarco.