Being there, it matters

Being there, it matters

I would like to give a little background on both my wife and mother.  Not the whole family history, etc. but rather how my situation directly affects them and triggers certain memories.  Nita’s father passed away from pancreatic cancer just a year after my father died in the mid 90’s.  Nita was in her mid-20s and still figuring things out.  But watching her father go in a hospice bed at home made her grow up pretty quickly.  Her father had a traumatic birth with the doctor using forceps to remove young Luke Patrenella. During birth his eye was damaged to the extent that he needed a glass eye.  During the hospice stay, young Nita would help her father remove the eye so he could rest.  I believe some of the calm Nita is showing is due to the fact that she has seen this play out before, the first time is always the hardest.  She could have gone one of two ways with my situation and luckily (for us) she chose to be composed and strong.

Sixteen years ago my mother was alerted that her only brother was about to pass away. She flew out to San Diego to be with him.  While his family was out arguing about who knows what, she was alone with him as he went.  She held his hand and prayed with him.  In the course of four years she’d lost her husband and brother, from 2000 on, I’m all that is left (grandchildren notwithstanding).

So I have a favor to ask. It seems as though the first question everyone asks my wife and mother are, “How is Marco?”  While I appreciate this immensely and am firmly convinced that the thoughts and prayers are working…would you please ask how they are doing first?  They are suffering right along with me, not physically, but definitely feeling some pain.  Nita has to worry about which day in the future I might be in the hospice bed, where the children will be, and going through this again.  As was evident in my blog about my father, I still think about him and miss him dearly.  I can only imagine what thoughts cross the minds of Nita and mom.  Thank you for this extra step.

If you have been following all along, my second entry was about the Refiner’s touch.  Well I sure hope He sees His image soon.  My daughter Josie even asked me if the “cancer was almost gone.” We had a discussion about remission and return, but that daddy is always going to fight.  The side effects are getting worse.  My oncologist even backed off the doses 10% which he said is standard practice this far along and with my results showing positive reactions. God forbid we would have to go full throttle again in two weeks.  Monday night was the worst one yet.  I literally (not just figuratively) felt poisoned. It felt like waves of nausea and dull organ pain were dueling for attention.  If you’ve ever had food poisoning it felt somewhat like that, but I didn’t feel like there was anything to throw up.  Or maybe another way, remember that last really bad hangover…where you had chills and ached?  Multiply that by 20.  My anti (everything) meds just weren’t getting it done this time.  And my night time sleepy meds did not kick in either.  I was up until about 1AM (about 3 hours passed my normal bed time).  The bright side was I was able to hear the thunderstorm roll in.

I’ll be in Houston in a couple of weeks for a scan at MD Anderson.  I’m bringing the family this time.  They’ll go do fun stuff while I get the pokes and prods.  But we’ll be together and we’ll get to visit the extended family at the restaurant.  Feel free to join us at Patrenella’s or drop in for a drink Tuesday or maybe Wednesday night March 15/16.  The results will hopefully show some big gains and the recommendations will be the key to how my spring and summer go.  As it turns out, another coach on Connor’s baseball team had cancer and is seven years free.  I feel like I am surrounded by positive energy and for that I am thankful.  Usually there is a lull after an event, the first few weeks or months everyone is there for you, asking what they can do.  Then it tapers off as life continues and one gets busy with their own things.  I want to say thank you to my friends, family, support network, etc.  I have never felt alone throughout the last six months.  A celebrity friend of mine even recorded a video singing a song and sent it to me to cheer me up this week.  Another buddy took me to lunch on Thursday.  I firmly believe that healing is a combination of what your body can tolerate, your faith, your mental strength, and the love and prayers of your support group.  The latter is what helps you feel surrounded by love when you are alone in a chair with an IV attached.  Trust me, it matters, and it makes a difference. God bless you all.

The weekend before was great.  I was heading into the last two days of my off week where I absolutely feel the best I can feel.  Saturday Nita pulled off an impromptu play date with some of our kid’s best friends and parents at a local park. How many times had I seen this as an opportunity to take a break from the family, watch something mind numbing on the tube, or squeeze in some work?  Too many is the answer. This time I loaded up the golf cart with our baseball stuff, some water and snacks, and off we went.  We sang songs on the way and had a great time at the park.  One of the other dads and I started throwing and hitting the baseball.  Connor and Josie quickly moved down to where we were to join in the fun (nobody pinch me).  It was just a great day, we finished off with a fun family movie night in the man cave.

Sunday was Josie’s first day of tee ball practice, unfortunately I had to break it to Josie’s coach.  He was asking about practice days and my thoughts and I had to come out and tell him about my cancer and my pump limitations three days every fortnight. Although I don’t really feel weird about my situation anymore, the awkwardness is palpable the first time people hear the news .  And I try to soft sell it to avoid the inevitable, but how soft can you say, “I have stage four cancer.”  Anyone who has ever been around the disease knows it isn’t good.  But that brings up another aspect that too many people take for granted.  By now you know I’ve adopted the Live Like You Were Dying mantra (I will not be attempting a bull ride by the way).  I am constantly reminded that you don’t have to be diagnosed with a terminal disease to adopt this philosophy.  One of the most heart breaking moments of my entire cancer reality was a few weeks after my surgery.  A very dear friend and a man for whom I worked at Dell called me and texted me to tell me that HE was heartbroken and was praying for me every day.  He was a very devout Christian and a good family man.  A week later some dipshit running from the police crossed over the median on HWY 130 (80-85MPH speed limit), and hit my friend head on.  His son was in the car, and was badly injured but survived and healed.  Wally was killed instantly.  He was taking his son to practice. 

It can happen so fast, with no chance to tell everyone you love them.  No boys night dinners at the County Line (thanks brothers). No last nighttime kiss on your daughter’s forehead as you wish her sweet dreams.  No snuggle with your son as you say the nightly prayer. No last embrace of your wife to thank her for clean laundry, hot food, and loving you despite your pile of faults.  It can be over in an instant.  My gift is acceptance of my ultimate fate.  But nothing guarantees that cancer will be my exit strategy.  It could happen anytime, anywhere. So I choose not to live in fear but rather bask in the joy of simple everyday occurrences.  I don’t need to be snorkeling a coral reef to find happiness or escape.  In fact, I’m actually glad I didn’t win that 1B lottery.  What would I do with it?  I’m not a gear head so I don’t need cars. I like our house and neighborhood, and I don’t need a G650 (although I would love to fly in one someday).  I am happy with the life I have and am surrounded by the finest friends and family.  In fact, the extra time I’ve been spending with the kids looks like it is paying off.  Sitting on the couch the other day, (watching sports with my boy) Connor looked over and unprompted said, “You are the best dad ever” and he didn’t even ask for anything.  I’ve never felt more blessed.  TeamMarco@austin.rr.com

 

 

The Tortoise and the Hare

Tortoise and the Hare

Sunday was Valentine ’s Day.  We took the kids to church, to eat, then to a video arcade to have some fun.  Funny thing about church was the psalm song was about the refiner’s touch (My second, or fifth depending on your perspective, blog).  Perhaps another reminder of what is really going on.  After the service the kids went through the Stations of the Cross (their idea). It was nice hearing Connor read the placards and then act out the scene.  It serves as a reminder that no matter what, I’m going to be okay in the end.  Later that night we had the grandmothers over for dinner and it was a nice fun family day.  We’re getting closer to my vision of Connor taking Nita out on a date and me taking Josie on a Valentine’s date.  Maybe next year.

Remember the story of the tortoise and the hare?  I took Connor to baseball tryouts this weekend and two things happened.  He sucked and he was all smiles.  We practice intermittently at home and it’s somewhat by design.  I know that baseball is a game of repetition. However, I have always said that I’d rather Connor love baseball and watch it with me on the couch than be awesome at it and hate the game.  So we practice enough to keep it fun and develop some skills.  So far, my plan has worked.  He loves the game and now even Josie is getting into it.  I have a feeling Connor is going to surprise people and become the most improved player this year.  Or he will still suck, one or the other.  Either way, we’re all having a blast…and I’ll be WAY less intense as a coach as I was last year.

Wednesday night I was channel surfing after the kids went to bed and I stumbled upon a Breaking Bad marathon.  It was the episode with the fly in the clean room under the laundry factory.  In it Walt is explaining when he thought he should have died.  That perfect moment before things went wrong.  I won’t spoil it for those who haven’t seen the series except to say it is a very easy series to binge watch.  But it really made me reflect on my own situation.  Walter was a cancer guy and he approached things in a somewhat similar way.  Now I have no intention of starting a meth empire, so that aside, I do think about my family.  Walt’s method was to generate revenue to set his family up.  My method is to generate experiences instead.

So I reflected on my Tuesday.  What an awesome afternoon.  After work, I told the kids we were going to practice baseball a bit.  So the kids strapped on their new backpack bat/bags to the side yard.  We put on gloves and helmets and Josie shagged balls while Connor hit some soft toss and off the tee.  Connor then shagged balls while Josie hit off the tee.  He’d field the ball and then throw it to me on the fly…unlike his tryout where he threw everything into the dirt.   But the best part was here we were, outside, laughing, sliding, falling down, and having a blast.  Like Walt I was thinking if there was a day I could choose to “go.”  That was the day.  It was exactly how I hoped parenting would be.  All fun and baseball, outside in the sun, laughing, hugging, and high fiving.  What an amazing afternoon.  I’m sure I’ll have more days like this, but it was pretty sweet.

Thursday morning I had breakfast with an old friend and former business colleague.  We talked a lot about business, the blog, life, cancer, etc.  He mentioned that when he reads about my interaction with the children it is as though I’ve been given a gift.  I concurred. I have stated on more than one occasion than I truly consider my cancer as both a God smack and a gift.  There were some things in my life that needed to change and more interaction with my family was one of them. Tuesday’s baseball practice in the yard was a perfect example.  Seven months ago I might have still taken them outside to practice, but we’d be more focused on skills and drills.  I’d probably fall into coach mode and angle toward the most efficient path to improvement. But Tuesday was fun.  And that was the goal.  Get them acclimated to putting on the glove, wearing cleats, making baseball movements…but mostly having fun.  And it was.  The kids were smiling and laughing the entire time.  They had so much fun they accidentally got better.  We even had to fetch momma to come watch “how good they had become" (according to Josie).

Nita and I had a nice discussion about this.  She very sweetly said she didn’t want to lose me and was very happy and hopeful based on the new test results.  I told her not to confuse my pragmatism with a lack of optimism. I have a theory and that in order to beat this or anything, you need to stay mentally strong.  I think that if my cancer goes into remission I need to always maintain the mindset that it WILL come back.  Whether or not it happens is irrelevant.  My theory is that if I let my guard down, accept that it is gone forever then I will not be fully battle ready for another round of surgery, poison, radiation, or whatever needs to happen.  I cannot let my guard down.  This also goes along with my God smack theory.  If I don’t stay aware and allow my bad habits to creep back into my life, then I prove that I didn’t learn the lesson I was supposed to learn.  And if that happens perhaps I’m opening the door to another “nudge” from above.

So here I am, enjoying my life, enjoying my family and enduring my chemotherapy.  It sounds funny to think that I’m looking at a terminal disease through the lens of all the joy it has brought.  But I’m not in the race for the sprint.  I’m in for however long the race will be.  And I’m not sad, I’m delighted to be given this gift of understanding.  Throughout our lives we’ve all seen our peers race out to a big lead in whatever: sports, work, life, etc... only to come back to the pack.  It is why they call the pace man in a mile race the rabbit.  He jumps out to a lead, sets the pace, and then falls off. Sometimes he doesn’t even finish.  The goal in any endeavor is to get to the finish line (and win if you can of course).  The tortoise never gave up, didn’t get down, and certainly did not lack hope or confidence. 

As you may have noticed, I’m somewhat of movie buff and I find a lot of lessons in them.  In the movie Gattica the protagonist, Ethan Hawke, is a “God birth” during a time of genetic modifications designed to remove impurities.  He’s supposed to be invalid as a being in this new utopian society.  However he routinely beats his brother in a swimming competition.  His brother who was genetically altered to remove imperfections is both frustrated and confused by this.  Ethan’s character finally reveals to him, “You know why I won?  I didn’t save anything for the swim back.”  His “perfect” brother was aware of his mortality, Ethan’s character knew he was supposed to die so instead he chose to live.  So there it is.  The tortoise wins.  Connor will catch up to those who jumped out to a big lead and just watch, he will surprise a lot of people. Of this I have no doubt.  And me?  I feel like I sprinted out quickly and then got complacent and lost sight of the finish line.  Now, I’m more aware, smelling the roses, and loving my family.  Can the hare become a tortoise?  Why not. 

Next week is chemo week.  It will undoubtedly suck.  I’ll plow through it, slow and easy and pop up on the other side.  Oh, and I developed plantar fasciitis presumably while teaching Connor to run with longer strides.  Lucky for me another buddy is a podiatrist. So he’ll fix me up and I’ll manage.  It’s not too bad right now and I can still get out there and play ball with Connor and Josie.  Baseball and tee-ball seasons are just starting and my kids are excited.  To be honest, so am I.  We had a practice for Connor’s team on Thursday after work.  How did I get so out of shape that my whole body aches?  And my foot?  Holy smokes!  I iced it, put my brace on, kept shoes for support…and still this morning felt like I was walking on nails.  It was so bad that when I was limping to the kitchen, Connor came over and grabbed my elbow and said, “I’ll help you dad.” What a kid.  So what do I have to complain about?  Nothing.  Estoy en paz.  TeamMarco@austin.rr.com

 

Cha Cha Cha Changes...

Cha cha cha changes…

I probably should have done this closer to the David Bowie passing, but oh well.  First and foremost…the daddy daughter date was a resounding success.  As instructed by an army of moms and dads I did wear my tux, did come to the front door and ring the bell, and of course she received a corsage. Nita procured a matching boutonniere for me. My cousin Robert, who owns a mortuary, sent a limo (not a hearse) to pick us up and take us the entire mile to the club.  It was awesome and Josie felt as fancy as could be felt at five years old.  Nita even let her use the tiara from her wedding.  The night was fantastic and we danced almost the entire time.  I would not trade that moment for anything.  I wore a black felt hat and more than a few folks have said that should be my new look.  I wonder if it was just the tux dressing it up. Also, after the dance several of the dads went to Steiner Ranch Steakhouse to have a beverage.  We "settled" for the Pappy Van Winkle 10 year. Thanks Mike. 

 

 

Monday was my ninth treatment and they are definitely getting progressively harder.  Woof. I was nauseous and had the hiccups almost all Monday afternoon and most of the day Tuesday.  Wednesday most of the irinotecan must have passed through my system because I almost felt human.  This was the first time it actually affected my sleep. It was somewhat miserable.  Man I am really looking forward to getting 10-12 done so I can get a break, even if it is just a few weeks.  This junk is no fun.  However the upside is my CEA score came back and it was 1.4.  That is firmly in the normal level and WAY better than the 15.8 in October.  This is a pretty big swing and a very big deal.  This could symbolize a drastic change in both the size and density of my current tumors. I don’t want to get everyone’s hopes up too high, but my next CT scan could be nothing short of miraculous…but what else would you expect during Lent?

One thing I can honestly comment on: I kind of get it now.  Previously I mentioned that I don’t judge anyone for choosing not to go through this again after a relapse or when the cancer comes back.  I was judging on my mental state at the time and these hadn’t stacked up like they have now.  I still don’t believe I will give in, but I can very certainly understand someone who might be going through this in their twilight years and has watched their kids get married, maybe watched their grandkids open Christmas presents, say their first words, and walk, etc.  I can see how perhaps the thought is, “This is way too difficult to go through again, I’ve seen all I need to see, and like that last scene in Cheers, “Sorry we’re Closed.”

Kirby, here is my war face.

Ash Wednesday came and it was the same day as pump removal…I decided to parlay that into hair removal as well.  Yes, I had my head shaved down to a #2.  I can say with all honesty it is the very first buzz cut of my entire life.  I’m also glad I had it done professionally instead of at home like the original plan.  There was much more to it than just a few passes with the clippers. It doesn’t look or feel that bad.  But days later it is still somewhat shocking when I look in a mirror.  Like all things, I suppose it’ll take a little getting used to.  I’ll also have to get used to using sun screen on my head, but that will be somewhat offset by the gel and shampoo cost savings.  While going to get ashes with my daughter, Josephine asked me if the cancer was almost gone.  I responded, “I hope so sweetheart, I sure hope so.” “Would it be a miracle dad?” “I think so my love, and Easter is the perfect time isn’t it?” I replied.

Connor and Nita both love the new hairdo.  Connor called it “sick” and gave my head a hearty rub.  Nita said it looked a lot better than she expected, which is nice.  Once I got over the vanity aspect, I suppose it isn’t too bad.  The upside is I only use one half pump of shampoo instead of 2 ½, my hair looks the same even when I take my hat off, and neither wind nor humidity affect it anymore.  On a separate note, I am feeling allergies for the first time.  Man, those things suck don’t they?  Sorry for all you regular sufferers out there.

Two big events this weekend, baseball tryouts and Valentine’s Day.  I won’t go into my hallmark holiday routine, but what I will say is there is an upside to the medication.  My sense of smell is heightened, so the roses I bought for my wife, daughter, mother, and MIL all smell great in the house.  I can literally smell them two rooms away.  Talk about stopping to smell the roses, how about not even having to stop?  As for baseball, this has been fun.  The kids both overwhelmingly stated they wanted to play this year.  So we have been doing some minor practice around the house.  Josie is really improving, she’s going to love t-ball.  Connor is getting better, and he is also improving.  This year he is actually enthusiastic about home practice.  He has to try out for the 8U teams, but even if he’s drafted last, he’ll be on a team and we’ll have fun.  I told the commissioner I could only “help” coach when asked to take a team.  I honestly can’t see myself running around doing drills with a pump in my chest.  But that is only a few days a week and thanks again to Dr. Lakshman, I don’t have an ileostomy bag draining full time.  So I’ll help how I can, when I can.  I’m pretty sure I won’t be nearly as intense as I was last year.  Actually, I’m very sure.  There is too much for which to be thankful right now to be even remotely concerned about a child’s throwing form.  Lets just have fun.  Patience is another gift I’ve been given recently.  I can’t explain why or how, but things that used to really set me off, no longer do. Fewer things stress me out, more things make me happy. Go figure.  TeamMarco@austin.rr.com

I Will Be Taking My Talents To...

I will be taking my talents to…

This week is letter of intent week for college football, or national signing day.  It is a way more stressful time than it should be for grown men.  Depending on your perspective, either fortunately or unfortunately this year it is way less stressful than it used to be, but I will admit still too much of my energy is consumed by this.  An adult’s life shouldn’t revolve around sweating the college choices of 17 -18 year olds…that aren’t yours.  But technically it does have an effect on the outcome of most of the Saturdays in the fall each year, even though it doesn’t really change the world...completely.  I used to think it did, don’t get me wrong, but I don’t any longer.  Still, my friends from all schools are absolutely going nuts and glued to their recruiting pages and twitter.  Yes grown men are following the twitter feeds of teenagers, but not in a way that could get you arrested (mostly).

This is daddy-daughter dance weekend. I am taking my sweet five year old daughter Josephine to her very first dance.  I asked on Facebook if I should get her a corsage or not and 100 responses later there was: a limo, diamonds, bouquets, dinner, dessert, and every other wish-list fantasy all the neighborhood mom’s wanted to relive being suggested.  It was awesome…and Josie will reap the benefits for sure (but not the entire list, that is crazy).  I have to tell you there is a LOT of passion about a girl’s first daddy-daughter dance experience.  I had no idea, how passionate.  Sure, I still get excited over stupid stuff like that jerky linebacker who flipped commitments or hitting the gut shot straight on the river, but otherwise I’m pretty even keeled…now.  Josie is beside herself excited.  I told her about the dance on Tuesday morning and she almost did a somersault. She is now trying to decide which of her “fancy” dresses she’ll wear and of course Nita is taking her to get new shoes. 

I love this excitement the kids are showing to spend time with me.  It certainly makes me miss my father, but it helps me cherish these times with my kids.  Sunday, Nita took Josie to a birthday party that Connor was not invited to attend.  We decided we’d have a daddy-son day. He ran off and made a list of things we were going to do, and we did almost all of them.  We went to Academy to buy new gear for the upcoming baseball season, went to an arcade, to lunch, to a jumpy place, to a baseball clinic, the aquarium, then back home for ice cream.  All in seven hours.  (This is what I mean when I say I tend to overdo it when I’m having a good day). Nita was amazed and Connor was all grins.  “You went to Catch Air (jumpy place) for 30 minutes?” She asked.  “Hell yes we did, it was on the list!” I responded with an added wink and a smile.

Speaking of excitement...my son just came up to me and admitted he was throwing rocks at the church preschool security lights…and he broke one.  I’m proud of him for two reasons and disappointed for two reasons.  First the disappointment: 1. He followed someone else doing something wrong. 2. He knew it was wrong but didn’t stop until an adult stopped him. Why I’m proud: 1. He admitted without lying or blaming anyone else that he was guilty, had broken a bulb, and knew it was wrong. 2. He hit the bulb.  Now some of you might be shaking your head like Nita was when I asked if he actually hit the bulb.  Connor and I have been working on throwing the baseball for years.  And because of his Sensory issues and ADHD, he sometimes throws a semi-accurate ball and other times looks like he just landed from mars and has never seen a ball before…or worse that Volvo or Volkswagen commercial with the dad who throws like he’s having a seizure.  Anyway, yes, Connor hit his target and I was proud.  Of course we gave him a punishment and he’s going to have to do chores to work off the price of the bulb…but he HIT the TARGET.  This could be a breakout year for us. 

From what I have heard seven is the first age of defiance.  Not that toddlers don’t waddle around saying “no,” or five year olds seeking new boundaries by seeing where the line is, but rather defiance in the face of acknowledged authority.  That is happening a little of course, but what I’m still proud of is the honesty.  Connor does not lie about his actions.  He still commits the act which we obviously need to work on, but he doesn’t lie about it.  He owns up to his mistakes and acknowledges them as mistakes.  Further, he doesn’t play the “I don’t know card.”  Regarding the rock throwing, when asked why he did it he stated, “I saw XXXXXX doing it and it looked interesting to me, so I did it too.”  Did I mention he hit his target?  I wish I had his courage at his age.  I have always said that character is baked in not bolted on after the fact.  So we are doing something right.  Oh and the other kid denied he was even involved.  Even more proud of Connor now.  I even stopped by his school to have lunch with him on Wednesday.

Side effect wise, this hasn’t been too bad of a week.  Someone asked me about the “good” days.  I told them that I don’t actually remember what it was like to feel great, so I don’t know if my good days are relatively good, or actually good.  I know they are way better than chemo week, so for now that is enough.  The hair has had it.  It’s got one more weekend for daddy-daughter dance (I don’t want Josie’s very first picture for a dance to look like a telethon commercial).   So we’re going to take the clippers outside and make it a family affair the following weekend. Then, as promised, the kids can have at my dome with the washable markers.  And yes Kirby, I’ll show my “war face.”  TeamMarco@austin.rr.com