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

It's all relative

It’s all relative

My father went in for a routine check up one day in the summer of 1995 and within 24 hours he was scheduled for a triple bypass.  I distinctly remember the hospital visit with my mother that night because it was the only time I’d ever seen him cry.  I remember telling him not to cry and that everything would be okay.  He said to me, “I’m not crying for me.  I’m crying for you, you are not ready yet.”  And as hard as it was to hear, he was right, I wasn’t.  At 26 I still was immature, going to a bar every Wednesday and Friday night with my buddies.  I was playing baseball in an “old man” league and beer league softball.  I had a nice title, but still was a low paying job.  It did however pay enough for the 69 cent drinks.  I was serial dating with no interest in really finding anyone or settling down.  I was essentially just going along somewhat aimlessly.  I was excelling at what I was doing, but without any sort of strategy or goals.

Dad made it through the surgery, and we talked a lot about life in the next 8 months.  He died the following March and, as stated in a previous blog, I was with him the entire day.  I promised him that I would take care of my mother no matter what, and I have kept my word.  I can still hear his voice when I think of his pre-op phrase.  At 26 I wasn’t ready, but I didn’t have to be I suppose.  A valid concern is whether or not I go before my children have a chance to promise me to take care of their mother (at an age when they understand the commitment)?  Will they be teenagers?  Will Josie be 10 yet?  Will they have to use my journal as a guide?  Or will I be able to ride this out until they hit 20?  If I can get them to 20, I think my work will be mostly done.  They are my opus. My legacy.  They are how I will judge myself on what kind of parent I was.  I never undergo a task without a goal and an associated metric anymore. Old Dell habit I guess, or maybe as early as that night in my father’s hospital room.

I’m a pragmatist, but by the grace of God don’t seem to fall into an emotional hole over my current situation.  I say that because several friends and family members have battled depression over the years and that is a nasty disease.  In my youth I thought it was just angst and cries for attention, now I know that it can be an uncontrollable, or at least extremely hard to control without proper attention and medication, state of mind.  My heart goes out to those who have been affected.  I can usually find a rainbow in a pile of dog shit, so I’m not worried about me.  I’m staying very positive around my children and occasionally share the full extent of what I’m feeling to my wife, so I think that might be helping with a calmer house.  The kids are a bit anxious, this has been going on for almost half a year now.  And I know in their world they need to see some results that are tangible, not just words, numbers on a page, or an uninterpretable scan video.  My numbers are improving, things are getting better, and we’ll see in two months what the next steps are.  I’m hoping for the kid’s sake there is a break in the action. That will be a positive measure for them.  It’s tough for them to see me either in my office working or on the couch covered in a quilt during chemo week.  Maybe that's why I try to do so much during the off week.  Oh, I almost forgot to mention what an awesome time we had with the Wild Kratts.  The kids acted like they'd met their heroes.  Another example of timing my off weeks.  I don't feel great, but it's all relative.

Monday-Wednesday was my 8^th treatment.  That leaves between four and seven in this first round (they try to stay within 12-15 due to the effect on healthy cells).  After my scan in March, they’ll decide whether or not to move to radiation, maintenance medication (chemo-light – still have to use the pump but elimination of the Irinitican), or give my body a break for a couple of months.  I’ve settled into this routine so much that I don’t know what I’ll do without going to Texas Oncology 2-3 times per week.  Good news is it looks like the new Filgrastim (neupogen replacement white blood cell booster) worked.  The numbers were good enough for me to get Chemo and the side effects were no worse than the other.  It was just the first time, so I am viewing this as simply a data point and not yet a trend.  I don’t know if the other 5-6 Neupogen shots got us here first or not.  So we’ll see as the weeks pass. CEA score: 2.3, down another tick, this is great news.  It means the cancer is shrinking and most likely no net new activity.  My numbers have been in the “normal” range since December 28 which, by the way, is the anniversary day of my first date with Nita.  And my travel ban has been lifted, so I’m clear to see customers should I need to hit the road.  How is that for positive?  As for the rest…the diarrhea is about the same as last week and the nosebleeds and mouth sores are tolerable. However, Tuesday and Wednesday the nausea was much worse than normal.  It made for two absolutely miserable days and it took a ton of energy to hide it from the kids when they came home from school.  Add in the fact that I had the hiccups for about six hours on Tuesday and, well it was no fun.  The nurses think it’s the Irinitican (the “iri” in Fulfiri).  Apparently this is where the cumulative effect gets the toughest. I’ve even been put on Prilosec and I’ve never had acid reflux issues before.  The headaches are getting rarer, bone pain is what it is, and I’ll just have to power through it.  Unlike the dread pirate Scott, I am not building up a tolerance to my Iocane powder.  It was a cute bit in the Princess Bride, but I don’t think you can get used to poison.

Oh, one of the nurses did the “hair check” and confirmed that the thinning will continue and it probably won’t make it to the last treatment.  So we’ve decided to do a shave off at home with the kids.  Then Josie and Connor can each draw something in non-permanent ink.  I’m guessing we’re a couple of weeks away on this one.  I may or may not go full Kojak, maybe closer to Full Metal Jacket. With my improving numbers I guess I’ll have to save the best line from the movie 13 hours (not a spoiler). “I sure hope God has a sense of humor, we’re about to find out.” And I really do for my sake hope He does, if not, it might be toasty.  But for now, I have some time.

My diet is really frustrating my wife.  I can still taste food, but it isn’t the same.  I can certainly smell everything and that mostly triggers the memories of how things should taste.  Savory, sweet, and sour are all I can really taste.  Spicy I can feel…twice.  So I keep sweets in the house.  Kids love it, Nita not so much.  With the meds and what my doctors are calling a gladiator’s esophageal sphincter I’m still holding almost everything down.  I don’t really like throwing up and I’m also being smart about it.  Sunday during the football games I made a big pot of chili (used Bill’s idea and added some smoked ribeye to the rest of my normal concoction). Monday, I was smart enough to not eat it.  The chemo looks for any excuse to pound you, so anything super acidic is not the best way home.  It’s not rocket surgery, just common sense I guess.

One of the things that was most fun about potentially winning the powerball, was the planning.  It seems like yesterday that I was touring the multimillion dollar lakeside properties prior to my $12 win for the Billion dollar powerball.  Over the years one thing I would occasionally do (usually around tax season), would be to plan out our retirement.  Check out places where you could live on a pittance, Costa Rica, Ecuador, Panama, etc.  Well now, like the lottery, I may not be an active participant in retirement.  I’ll still plan for the budget, but I suppose I should recuse myself from the location planning, necessary amenities, and the like.

One thing we are planning for are the vacations for the year.  Nothing fancy, just a week in South Padre and a weekend overnight at Fossil Rim Nature Preserve in Glen Rose.  We’re watching our capital outlays and making sure we’ve got enough in the tank for anything else that comes up.  Again, I don’t mean to overdo it, but thanks again for your generosity, prayers, and support.   TeamMarco@austin.rr.com.

 

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

What does a good life look like?

What does a good life look like?

I attended the funeral of a wonderful woman on Saturday. She fought and beat cancer once, then when it came back decided not to fight it again.  Within weeks she was gone.  The funeral was filled with an eclectic group of folks.  It showed how all the parts of our lives affect so many and is interesting when these all intersect.  Another interesting and touching part included the people who spoke about coming to see her in her last days.  This part was surreal to me.  I somewhat projected here but wondered what my visitor ratio would be…by that I mean the number of people who came to pay respects versus the number of people who came to make sure I was dead.  Of course that is tongue in cheek, but it made for some interesting thoughts.

Later that night I was watching the Bengals completely implode against the Steelers.  The Pittsburg quarterback Ben Roethlisberger came back into the game after what was a noticeably bad injury to lead his team to the win (with help, but that isn’t germane for this).  The point is it’s the playoffs and so what if he gets a little more injured?  He’ll have all off season to recover if they lose.  Kind of like the line Sam Elliot drops in the movie Roadhouse, “I’ll get all the sleep I need when I’m dead.”  I mention this because a lot of people came to visit our friend in the hospital during the end game.  And many may have been worried about whether or not she needed rest.  As in life, she was gracious, sweet, and conscientious of the travelers time and sacrifice.  I hope I can remember this and show equal grace when my time comes.  But either way, when that time does arrive…come visit me.  I don’t care if I’m tired and need to rest, WTF would I possibly be saving my energy for?  When you stop the chemo and decide it’s time…it moves fast.  So come on down and bring your best stories, jokes, a guitar, bourbon, whatever.  And I’m not being overly dramatic.  We are all dying, some of us know it, and choose to live in between.

The day of my surgery I said "No visitors" So these four showed up until they wheeled me into Pre-Op

 

My friend’s daughter is a poet and a lot of poetry was read/shown at the funeral.  One that really stuck out on me was by Ralph Waldo Emerson, it was his definition of success:

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.”

I was able to visit with some of the Aggie Yell (cookbook) guys for a lunch on Friday. That was fun and we talked about football and cancer at the end.  It was nice to get to put some faces to names/handles and enjoy the comradery.  Again, “From the inside you can’t explain it, from the outside you can’t understand it.” Good Bull fellas.

The powerball frenzy is up right now.  $900 Million on Saturday (no winner) and 1.5B on Wednesday night.  What would you do with all that money?  Part of the fun is the anticipation isn’t it?  What would you do with this life changing amount?  Obviously when there is a B in your bank account, the answer is “anything.”  But what is more fun is the planning isn’t it? Which of your friends’ houses you’d pay off.  What color your new Maybach might be.  Would you sign a net jets agreement or just buy your own plane?  Where would you visit first?  (As an aside, I did not win, but I would have taken very good care of all the folks who donated time, food, and to the gofundme campaign… sorry my numbers didn’t match). But the point is, doesn’t the excitement force the creation of a type of bucket list?  When you strip away the impossible, it leaves you with some tangible things you can do today.  That is kind of like living with cancer.  Instead of a windfall of money, you get the urgency to do those things you haven’t done and to be more present in your friends and families lives.  One of the things the pastor said in the funeral on Saturday was that our friend’s death reminded him of Winnie the Pooh.  When Pooh was asked what his favorite thing was he said he didn’t know the word for it.  But it was that moment right before you ate the honey.  Makes you want to go do something doesn’t it?  So go do it.  And I hope this comes across as inspirational and not preachy.  Do what you want, it’s your life.  The greatest thing about living in the USA is we can choose any path.  I’m choosing to live for today, my kids, my wife, my friends, and family.

The opposite of the powerball excitement is the stock market reality.  There is a lot of paper disappearing from people’s accounts.  That sucks.  One of my blogs a while back was, “Where’d all the money go?”  The funny thing is at times like this I wonder which would be more miserable:  Not having travelled and not having the experiences Nita and I had? Or just sitting and watching numbers disappear in an account on the internet.  Luckily we did travel, we lived, and unfortunately we are still watching the disappearing act.  Hopefully like all things it will come back when we need them or when Nita is at retirement age…she should be funded if she needs them sooner.

What is more exciting than the college football National Championship? Infusion day!  Yep, time to mosey on over to Texas Oncology, get my port accessed and start the drips.  The nausea is getting progressively worse, but still controllable with meds and the diarrhea has stepped up its game.  My appetite is purely there for show at this point.  I just have to watch the clock and eat when it’s time to eat.  Nita has been putting hand lotion on and my hands are getting a little better.  She also very sweetly said that she wished she could take some of the burden.  I told her that I wouldn’t give it if I had the power, and for now I can take it for the family.  But there is great news too.  My tumor marker (CEA) results came back in the normal range going on 2 weeks in a row, and getting progressively lower.  This is significant because I originally thought it was a marker for net new growth, but I found out Wednesday that it includes “killing the cancer.”  So the treatments are working!  Which is great news because my daughter Josie made me pinky swear that I would get better, and “daddy always keeps his promises.” And if you’ve been following the news we lost my aforementioned friend on Christmas Eve, David Bowie last week, and Alan Rickman (Snape) yesterday…all from cancer.

Additionally this is my seventh treatment, so I’m over the hump on my first round I hope.  February 28 will be a big milestone.  If you go all the way back to the first blog post, I mentioned that one of the doctors said, “10 years ago, you would have been given six months to get your affairs in order.”  Six months is the number they gave me prior to some of the new technology, so that is effectively the first gate.  I’m hoping I can spend the end of spring and summer taking only maintenance medications and not the hard core chemo. 

I am reminded that I finally listened to the whole song Live like you were dying. Good song, great meaning.  In one of my earlier posts I talked about the Refiner’s touch.  I opine that perhaps this was my lesson to change some of my habits, and take charge of my happiness. Well, even if this victory is short lived, I believe I’ve found that, and I’m hearing from some readers that they have too.  So that is another victory for the good guys.  And if this is truly the path to winning the first round, I hope to keep living, well like I am dying, because it is a gift.  I sure plan to anyway, and I hope y’all will join me.

You're going to put what? Where?

You’re going to put what, where?

This New Year’s Eve party would not be like the previous ones.  Due to my lowered white blood cell (WBC) count, we decided to host a small get together.  The goal was to ring in the New Year around 9PM.  Well, the bowl games were exciting, the kids were having a blast with the poppers and sparklers, and we went ahead and partied on until 11PM to ring in the East coast ball drop.  Champagne and hugs all around!  That night I spiked a fever.  I guess all the party prep, shopping, cleaning, etc. just did me in.  I slept for 12 hours that night/morning.  The next day I was a zombie. I couldn’t get warm enough.  I tried to hydrate as much as possible, but everything ached.  I was hoping it was just a mild little bug that would run its course in a day or so.  January 1 was not my best but truth be known probably not the worst I’ve felt, for different reasons.  That morning the WBC boost shot I had really started kicking in…I’m guessing because of the WBCs needed to combat whatever was going on…so my hips and legs started to really scream at me.  That wasn’t fun.  I basically got on the couch under a quilt and watched football most of the day, pretty easy to do on New Year’s Day anyway.  I slept for another 11 hours that night. 

The following day was still a good football day and I was still feeling chilled, dehydrated, and had a slight fever.  At no time did I feel the need to contact any medical authorities.  My body was still containing everything and I was using my meds in a decent balance.  The redeeming thing about January 2, was the kids wanted to do playdates with friends and it was too cold to play outside with the outside toys so there wasn’t a need for me to really do much.  They did their things with their friends, and I of course bundled under a quilt to watch football.  We had a family movie night and put the kids down just in time to watch TCU’s monster comeback against Oregon.  Wow.  Why Sports?  Because of this!

Each of those three nights I sweat through my t-shirts and had to question if I was taking enough Imodium. My mother grew up in a generation that anytime you felt bad the answer was, “take a laxative, you need to get that all out.”  I think it was one generation removed from leaches and bleeding.  So part of me was wondering did I need to get “it” all out or was this still just the chemo doing its chemo-ey thing.  As of January 3 the headaches were still persistent and I have to be careful with my pain meds.  Hydrocodone has Tylenol which is bad for your liver.  And I need my liver to process and filter out all the junk/chemo, etc. not to mention I have cancer in my liver.  And I can’t drink much for the same reason.  So no “grandma’s hot toddy” recipe to sooth my throat and head.  Just have to gut through it and hydrate.

Monday will be better because I’ll go into the office for a bit and then head to the oncology center for some fluids.  Brand new year, so I should be met with a nice chunky deductible payment and copays.  And so it starts again.  However, because of the amazing support of our friends and family in different funding campaigns it is far less daunting than it was just one month ago.  Thank you all for that.  We’re now able to fully pay off the 2015 obligations and have a great head start on 2016.

Back to Sunday, what do you do when you feel like you’ve been dragged behind a car for three days?  Why take the family ice skating of course!  Am I a good skater?  No I am not.  In fact it was the very first experience for the kids.  Connor was not a fan, Josie decided she is the best skater in the family (and she is) and according to her, will “probably win a medal playing hockey.”  And after three laps around the rink…she might be right. First lap, she fell every two steps.  By the third lap she was already doing spins.  Oh to be five and confident, okay, to be five.

 

I firmly believe that my lifetime of team and individual sports has helped developed my ability to cope and manage this situation.  I also believe that wrestling may have played an even larger role in a lot of the good things that have happened in my life.  Well Tuesday night Connor attended a wrestling tryout for a yearlong school. The most important part was he loved it.  He said he REALLY enjoyed it and wants to go full force into it.  I let him answer all the Master’s questions (tied to a martial arts dojo – has Brazilian Jiu Jitsu as well) and both hit it off.  The Master runs a tight ship as well, very intense, high discipline, but fun. I have not pushed Connor in any sport so I wouldn’t be “that” parent.  I’m really excited that this has just happened and that he is embracing it so well.  Proud doesn’t begin to describe it.

One of the very sweet things that people do is send any and every homeopathic remedy.  There are a lot!  There are sweat shops, starvation camps, ketone supplements, wasp venom, sugar/glucose purges, oxygen treatments, infrared saunas, soups, juicing, and of course medical THC.  I’ve even been invited to a FB page called “Don’t buy green bananas.”  Luckily the Western approach is currently working and it isn’t completely destroying my body (as far as we can tell).  I take the recommendations seriously though because as one friend with cancer recently flat out stated, “Well it’s either take the chemo or die right (welcome to the pragmatism on the inside)?”  And she’s right.  You can’t just wish it away.  If I don’t go through all this, my cancer will grow and overtake my organs until they shut down which will lead to any number of bad things including septic shock, cardiac arrest, etc.  However, the most recent recommendation is, well different…which again I take seriously as an option…anything is better than rolling over to die right?

So not everyone’s body responds to every protocol the same.  And no oncologist is going to recommend a month long starvation camp in Central America in lieu of chemo and expect to keep his/her license.  As we were discussing the new option, I did alert my friend that I could not resist mentioning it in the blog…it is absolute comedy gold.  The new one involves wheatgrass and enemas.  A lot of them.  Remember how excited I was about the barium enema during my first CT Scan at MD Anderson? Guess how excited I was when I heard I could potentially stop taking chemo if I only changed my diet to all raw vegetables…and juice up some grass and put it in my butt…frequently…for the absorption rate.  Hey there neighbor, could you do me a favor?  While you’re bagging up your yard clippings, may I have them?  I’m making a nice St. Augustine and Zoysia cocktail for my own afternoon southern irrigation.  It reminded me of a joke my nurse told me when my jaw was broken 25 years ago.

               A guy was in a car accident and had broken almost every bone in his body.  He was in a full body cast and his jaw was wired shut.  His nurse came to his side and said, “I feel so bad for you, is there anything I can do?”  He replies, (when you read this in your head, hear his voice with clenched teeth) “I really miss a good cup of coffee, could you get that for me?”  She replied, “I’m sorry, but we can’t risk you aspirating (throwing up) while your jaw is wired, but we could give it to you as an enema.”  The guy says to go for it.  So the nurse starts to administer the coffee and he starts convulsing.  She asks, “Oh my, is it too hot?”  He says, “NO it’s too sweet!”

So this new option spurred a 20 minute discussion with my wife about changing diets, trying anything, and that she would in fact be willing to administer whatever might be needed, ahem, to be done.  That’s quite a girl I got there.  For better or worse does not come with a checklist does it?  You just accept what comes down the line even if it involves putting liquefied veggies and grass in your butt.  Good thing chemo makes you sterile or things could get out of hand.

Speaking of hands, my hands are getting cracked and dry.  No amount of lotion seems to help. I wondered why they had little tubes of Aquaphor in baskets at chemo camp.  Now I know.  And the nose bleeds are constant.  I guess the air, allergies (immune system is lower), and constant nose blowing is just irritating my nasal membranes.  Two more things to add to the list.

But back to reality, if that’s what it takes? Then that’s what it takes.  Isn’t it funny that changing your diet or lifestyle seems completely out of the question and too inconvenient?  Until you get a terminal disease and then, among other things grass in your butt seems reasonable?  There is no option too outlandish once you get desperate.  I am blessed and lucky.  Even though I have a late stage metastatic cancer my body is responding to the first protocol.  If my cancer mutates or stops responding, I still have Western options, but I will try anything to buy another year with my family.  So there it is. I jest, but appreciate the time each of my friends and support group put into sending me links, books, and other ideas…not matter how outlandish.  They are sending them because it must have worked for someone somewhere and they care enough to share it with me.  So thank you.  As another aside, a USMC buddy of mine sent me a link to a wasp venom that kills cancer cells without killing normal cells.  I hate flying stinging insects (more than most people) as some of you know.  I mentioned that with my luck the only way to get the full effect was probably to sit in a room and let them sting you.  He replied, “Brother, if that is the only way…I will sit in the room with you.” 

 

 

 

 

 

At the end of the day, just stay alive or like Dori from Finding Nemo says, “Just keep swimming.”  There may be a cure out there someday, and someone has to win the lottery right?  Injecting poison, taking anti-nausea/diarrhea all day, cracked hands, bloody noses, neuropathy, hair loss, fatigue, loss of appetite, inability to eat spicy food, radical diet change, less sugar, no booze (once a week), no caffeine, etc.  What would you do or give up for one more day with your kids?  Anything! So I guess the price isn’t too steep after all, is it?  God bless.  TeamMarco@austin.rr.com

2015 Ends with a Bang!

2015 ends with a bang.

Even though this is my new reality, sometimes I lay in bed and wonder if this is really happening.  This week marks my seventh treatment.  I don’t think you can do more than 12 straight, they have to let your body recover.  How my markers and scans go in March will determine what the new maintenance drugs will be or if that will be the extent of it.  I am wondering what the last three quarters will hold for me.  Maintenance? Another surgery? Radiation?  And then do I start all over again in October?  While I’m thinking these thoughts, I hear the pump break the night silence and know that is not a dream.  I do not like infusion week.  The nausea is getting worse, but the heart breaker is the concern on my children’s faces.  I don’t like having to be more careful around them, watching for tubes and giving one sided hugs so they don’t jostle the needle in my chest. I can deal with the pains, but that last part sucks.  As many of you know I’m a very affectionate person – some would call me a hugger.  Now 20% of my time is guarding my accessed port (needle in my chest).

So here is how my typical two week cycle goes: Infusion week: Monday (roughly five hours) urine and blood test.  Before proceeding they need to make sure there are no proteins in my urine and my WBC count is high enough to further deplete it; also liver, platelets, and tumor markers need to be checked.  Then when Dr. Netaji gives me the thumbs up to proceed they access the port (stick a needle in my chest and start the lines.  I get anti-nausea, another side effect drug, saline, Avastin, Irinotecan, then a 3 second Fluorouracil (5FU) push, then they attach the pump with the bag of 5FU and I can go home.  I take alternating anti-nausea and anti-diarrhea meds during the day.  Tuesday is filled with nausea and trying not to catch my tube on anything.  I also am not supposed to shower and get my dressing wet.  On Wednesday I usually cheat and sneak in a bath or shower prior to going in, then I get another bag of anti-nausea, saline to hydrate (fluids), and then remove the pump.  Thursday, white blood cell booster shot.  Friday, anti-nausea and saline to hydrate.  Following week: Monday and Thursday I get another round of fluids, and maybe a WBC boost depending on my score.  Usually I’m feeling pretty good by Thursday through the weekend.  But it is short lived, because on the following Monday I start all over.  I have also been informed that my maintenance therapy may include the pump which I am really disliking each time.  I thought I’d get used to it, but instead I just loathe it.  But it is shrinking the cancer, so whatever it takes.

I’ve had several friends die of cancer since I started my treatments.  Two that stand out are one was a young guy with colon cancer with whom I went to high school (if you consider me young – I do). Another was a woman who had battled lung cancer once, was “cured.” It then came back to the other lung and she chose not to go through it all again.  That alone may give you an indication of what some go through, and how hard it really is.  In any case, I am acutely aware of how precious and unpredictable life is.  There is no reset button, you get one shot.

On the brighter side…my tumor marker scores went down another tic.  The CEA score was 3.2 in case you are keeping track at home. This has been a nice trend line considering I was at 15 just a few months ago.  Less than 3 is considered “normal.”  This is another indication that these meds are doing their jobs and things could work out.  I have often said, “God has led me this far, why would I believe he will let me go now?”  My hair is hanging on for dear life.  It is coming out and thinning, but still passable, no clumps.  No shave yet, but it probably won’t make it to spring.

The kids had a wonderful Christmas and got the things they really wanted.  Josie and Connor got new bikes, and nerf annihilator guns.  Santa brought tickets to the Wild Kratts show including a meet and greet.  Connor got a signed PGA flag from his Godfather who played the event this year.  We had Christmas Eve dinner at Nita’s mother’s house, and Christmas dinner at my mother’s house (of course we had tamales). It was calm and fun. Since I am unable to go into a big crowd of potentially a large number of sick people and I more than likely cannot stay awake passed 1AM; we are going to host a small kids’ rockin’ disco New Year dance and karaoke party at the house.  We let the kids each select one guest and we’ll officially welcome the New Year to Buenos Aires (9PM CST).  Then send the kids to bed after a spoonful of black-eyed peas.

I would also like to make a correction.  My mother read last week’s blog and said that when my grandmother gave my father the money he had been sending, he first paid cash for an extension on her house so it would become a two bedroom (it was the house I stayed in so many times as a kid I can’t believe it didn’t occur to me). He used what was left over to buy his used car, and that is the rest of the story.  Even though we lived in Austin (Manchaca) we still visited his my grandmother once a quarter and had her over for the big holidays.  We moved my mother into our neighborhood when Connor was born (Nita’s mom was offered but declined).  My mother was living way across town and I knew she needed more than an occasional visit.  She comes by a couple of times a week and even has the children sleep over at her home occasionally.  It’s so close we even go walk to pick them up sometimes.  I sincerely believe we added 10 years to her life by doing that.  It came from a story my dad told me that I have never forgotten:

There once was a man who married and had a child.  His wife was somewhat controlling and very into appearances.  When the man’s father got older, he invited him to stay in the house with them.  After a month the wife was furious.  She could no longer take the man’s manners, smells, farting, leaving clothes around, etc.  So she gave the husband an order, “Tell your father he has to go, I don’t care where.”  The husband didn’t have the heart to do it so he tells his son, “Give your abuelito this blanket and tell him he has to go, he can’t stay here anymore.”  The son does his duty and returns with half a blanket.  The father asks, “Why did you give him only half?”  The son replies, “The other half is for you, when I send you away from my house.” 

This story has eliminated any and all arguments about what we should do, and how much we should help our mothers (both fathers are deceased).  Love and take care of the ones who loved and took care of you.  Enjoy simple moments, kiss your children on the head and smell their hair.  There are incredible moments to savor every day, if we just take the time to notice.  Not every single moment is filled with rainbows and unicorns, but there are more than you probably notice.

Speaking of unbridled generosity, a very special thank you to all who took the time to read, share, and participate in either or both the cookbook and the go fund me campaigns.  It has meant a lot to us.  Nita cried when she saw the outpouring of support. The result is a huge portion of the anticipated medical costs for 2016 are covered.  Thank you all so much, God bless and BTHO Louisville!