Do you believe in miracles?

Do You Believe in Miracles?

During the week of June 12^th, I started feeling that pesky spleen pain again.  My oncologist and internal medicine doctors jointly had me checked into St. David’s North Austin Medical Center to get another CT scan prior to my chemo which was to be on June 19^th.  As they had seen on all previous scans there was a fluid pocket/hematoma sitting just off my spleen.  Almost all thought it was just some leakage from the splenic embolization surgery I had on Valentine’s day earlier this year.  They also thought that the body would absorb the fluid without incident.  Most were reluctant to go in and drain it because of the risk of infection, especially considering the reduced immune system I currently had due to the side effects of chemotherapy.

So we chalked it up to, “it’ll eventually get absorbed, off to Houston/MD Anderson we go.” On June 19^th, Nita and I patiently sat in our little room and had bag after bag of desensitized FulFox pumped into me.  Finally, around 12 hours later, Nita and I headed back to Austin.

On June 20, I started developing an ear infection.  They put me on a cycle of amoxicillin.  There was considerable jaw and ear pain.  On the 21^st, Nita took out the pump and flushed my port as she had been trained to do (dates important just to see how quickly this thing moved).  I was so tired and felt kind of crappy so I didn’t take a shower, even though I was riding the high of my best friend Omar’s PGA pro championship win.  He would now play in this year’s PGA as well as earn 6 tour exemptions over the next calendar year.  He called me and left me a message saying that the win “was for me!”  He had never done that before.

The next day, I was lying in bed with little Josephine watching a movie, waiting for my next pain med time.  All of a sudden, at 9:30 am I felt a huge surge of pain in my abdomen. I still had 30 minutes to go before I could take my hydrocodone, so I figured I’d just gut-up and wait.  Nita got the kids fed and off to the morning activities.  I stumbled to the man cave and waited for my drugs to kick in.  By 10:30, still nothing other than excruciating pain, the hydrocodone failed to put a dent in it. Around 11:30 Nita started getting lunch ready for the kids, prepping them for afternoon camps.  I sat uncomfortably in the man cave and shivered with chills and about four quilts draped over me.

She came to ask how I was doing and I told her that it was time to go to the emergency room.  She piled us all in the car and dropped me off.  I went into the ER and knew something was terribly wrong.  I’d texted some of my doctor friends and they came to check on me (each pushing on my belly). Another CT scan was performed. Finally, a bad ass doctor came around 5 PM or so and said we were going into surgery.  Nita came in to pre-op and gave me a kiss and said she’d see me after surgery.

They told me this was not a quick or minimally invasive laparoscopic job, they’d have to open me up.  When they got in, they discovered that the “fluid pocket” was actually a cyst that was the size of a personal watermelon wrapped around my spleen.  As soon as the doctor cut into the cyst a volcanic explosion of puss and fluid came gushing out, roughly three liters, even though it had already ruptured (at 9:30 that morning with my insides filling up with that puss). It went everywhere and the surgeons had to jump out of the way.  They had to use blankets to mop up the floor.  I found out later it was the wildest thing anyone of them had experienced.  My doctor had never seen such a thing in his entire career of surgery.

Still intubated

They did a quick patch job on me and took me to the ICU to discuss options.  I had already crossed the sepsis threshold and was on the clock.  However, due to the total timeline, for all intents and purposes, I should have died that night.  Nita and a couple of the “sister wives” (SW) from the tribe came into the ICU to see me.  Bear in mind that my surgical incision was still open and they would be going back into surgery within the next several hours.  Nita was understandably in shambles.  Had she just spoken to her husband for the last time? Was this it?  Was it time to call a Priest, or my cousin in the funeral business? In fact, she had these conversations with the surgeon.  My understanding is that she was almost in a fog as she explained what the doctors told her to my Pete and my mother.

About 24 hours later they went back in.  They decided to leave what was left of my spleen because it was so close to the pancreas.  The pancreas is so toxic, they didn’t want to introduce any new potential infections into my body.  Plus, my pulse and blood pressure were so erratic that they didn’t want to keep me open very long.  As it was described to Nita, “my heart was exploding out of my chest.”

When they resumed the surgery (in layman’s terms and literally) they took my internal organs out of my body, cleaned/hosed them off and stuffed them back into my abdomen.  So now if anyone asks if I’ve ever had an out of body experience…okay, you’re right, that was beneath me.

I was very lucky not to have gone into shock, again the surgeons, my wife, and the SWs all thought I was going to/should have died on Thursday night.  So after stuffing my organs back in, they took some cultures to see if there was an infection.  My white blood cell count had been crazy high for the last 8 weeks, but they assumed it was the chemo, the pneumonia, ear infection, or some combination of the three.  More on that later.  Needless to say, I survived and checked off what I consider at least one miracle.

On Friday the 23^rd, I woke up with an intubation tube down my throat, a Foley catheter, a JP (drainage) tube by my spleen, and a picc line (a catheter like a temporary port inserted in my biceps).  I had survived the second surgery. 

My hands were strapped to the bed and they couldn’t sedate me any further.  Apparently, I had exceeded the amount they could give me at that time. So I was wide awake and I needed to communicate.  My sign language was much to be desired.  I finally gave enough of a hint to have one arm un-restrained and was given some paper and a pen.  I could now communicate!

Within a few hours they had taken me off of the breathing tubes.  A few hours after that I was sitting up in a chair.  I am fairly certain that this second surgery and fairly rapid recovery qualifies as another or at least a piggy back of the previous miracle.  Believe or don’t, cool, whatever.  I’m telling you, I should be under ground, and yet here I am.

sitting up in ICU

Back to the story.  On Sunday, I was moved from ICU to 3 North, my favorite pod with the best nurses on the planet.  With my experience in business and now hospitalization, I am of the opinion that, like sales, nursing is a calling.  It is equal parts knowledge, art, and passion.  You can show up and go through the motions, or you can strive to be the best.  I feel the pod in 3 North is filled with those that have all three.

The Serbian woman who saved my bacon by getting me walking after my cancer surgery in 2015 was there and she was ready for another battle, she may be one of the better examples of art, passion, and skill.  She takes no shortcuts.  The doctors and nurses told me (which I already knew from a previous abdominal surgery) that in order to wake up my insides, I needed to walk, chew gum, sit up, and move.  This would first stimulate a fart (which would take me off of my ice chip diet), then poop, (which would move me to an all liquid instead of clear liquid diet, and eventually low residue diet).

Several days later I found out why walking helps.  One of the doctors explained that your intestines hang in your abdomen like theater curtains.  When you walk, they move, shake, and are agitated.  This stimulates movement and helps usher waste down the correct path.  So the more you walk, the better it is for your intestines to wake up.

Going for a walk with Connor, notice the big bag of gravy (TPN)

Meanwhile have I mentioned that my system coming back on line was quite painful?  Because it hurt. A LOT!  But, who am I to complain, I’m alive y’all.  But being still hurt, lying down hurt, sitting up hurt, walking the hall certainly hurt, in fact, everything hurt.  At least I had a constant drip of dilaudid with a quick boost button (that would eventually go away). 

The other issue with opiate pain killers is that even though they provide pain relief, it comes with a cost; constipation.  If you remember way back to the first surgery in 2015 it was done by a colorectal surgeon.  He used the Da Vinci device and then did a colonoscopy going over my colon inch by inch to clean out any impacted poop I may have had.  He also had a lot more time to do his work as I was not showing signs of cardiac distress and there was no leakage which might lead to septic shock.

I’m not going to make y’all relive every moment play by play, but cutting to the chase I needed to shower too.  I hadn’t taken a shower since Monday the 19^th.  My favorite patient care technician, Violeta, put protective film over my JP line, my incision, and my picc line.  She started the water and sat me down on the stool.  Now my incision was a straight cut from my diaphragm to just below the belly button, about a foot long.  Twenty three staples.  That portion included just about all if not all of my abdominal muscles.  Put another way, any direction I would turn, move, wash, etc. involved my core.  So I was putting immense strain on a muscle group with a big ole slice all the way through. 

Once I got out of the shower, was dried off, had my dressings replaced, and a new gown put on, I was wiped out.  Completely.  I was in pain and had zero energy left.  The good news is that I had already farted a few times and was able to sip some Gatorade, broth, and even some hot tea.  Mom and Nita came to visit and shared what the questions of the hood were.  It even hurt to facebook on my phone, so that was done at a minimum.  Imagine having all the time in the world to do something and zero energy or stamina to do and continue it?  My only activity was lying in bed, moving to my recliner chair, and walking the hall…with all my fluids and connections in tow.

23 staples

Finally, on June 29^th, I pooped.  It was not pleasant. In fact, it felt like I was passing baseballs. Once I started though, I refused to let go until the job was done.  I kept feeling like it was halfway in and halfway out, but we were going to do this! I used the stability poles on either side of the toilet like ski poles maneuvering my body back and forth trying to get whatever was stuck in my sphincter unstuck.  Now, I will never be so stupid as to even think that I have any idea what it is like to give birth to a child.  None!  But now, I sort of feel like I have slid a little further down the empathy continuum.

I could not over-push because my abs hurt and I was told not to put too much pressure on my stitches and tender insides, so I had to do what I could to get it out.  I finally finished the job and was as equally exhausted as the shower a few days earlier.  But at least now my diet would change.  However, the little appetite I had, did not translate into the ability to consume food.  I had a big TPN bag (IV nutrition to ensure my body was getting the correct amounts of nutrition during the healing process) which looked like a 2-pound bag of cream gravy that was providing my nutrition.  So my stomach was not incented to start stuffing itself out of necessity.  The body has several protective systems in place to guard itself after trauma.  One of those is moving bowels after major abdominal trauma, they are the last system to “wake up.” It gave the opportunity to move slowly as my system woke up, but didn’t provide relief.

On Saturday July 1, I had not repeated my past lavatorial victory.  But I was on an opioid pain med, which we know causes constipation.  I was told by one of the four to five doctors who visited daily that there was a drug called Relistor which would block the constipation effect while leaving the pain killing function.  Great! What could go wrong?  I asked my nurse to sign me up. 

So here is the thing, it involved a shot directly into the abdomen.  In the grand scheme of things…I am already getting my fingers lanced to check my blood sugar checked four times a day, plus all the other pokes, prods, blood draws, and general pain.  And it is hard to quantify the pain of stomach distension due to trapped gas and waste.  Okay, I’m in.  It wasn’t that bad.  In fact, about 2 minutes after the shot I started farting.  Then the crooked dog head move.  I needed to get to the toilet and immediately.  They had apparently given me the Dumb and Dumber turbo lax shot.  I would know for the next time that after the shot, I should go ahead and mosey on over to the commode.

I gripped the bars on each side of the toilet and I felt like I was hanging on for dear life.  My bowels emptied and I eventually felt better. This time it was the opposite of the first movement.  It came out quickly, loose, and in large volumes.  All the food on the new low residue diet I was eating and keeping down needed some place to go.  I had to give myself at least two separate courtesy flushes this time.

The next day Nita came without the kids and she helped me into the shower.  Bless her heart and soul she washed me all over so I wouldn’t have to expend more energy than holding onto the rails.  I was able to shave when I was done and change into actual clothing instead of a gown.  Now the goals were to repeat the process.  By that I mean eat and poop.  It wasn’t coming that easily even though I was on the low residue diet.  However, I was walking the halls without nurses now, and we had started working to modify my pain medications so I could have a sustainable pain management strategy with as little of a constipative (not a word, but it should be) effect as possible when I got home.  The doctors all thought my progress was amazing and that I was on track to be home by Friday July 7.

The date was significant because it would be the end of my antibiotic cycle.  I still needed to take my antibiotics via IV and my picc line was getting squirrelly at times.  For those of you asking about the port…don’t ask.  Did I mention that during the surgery they did cultures and discovered I had a staph infection on my spleen as well?  My immunologist said it was a one in a million shot and that I should consider a lottery ticket.  I told him I already bought one and cashed it in last Thursday and Friday.  I used it to stay above ground and as far as I know, they don’t sell winners back to back. 

To be honest, I used to play the lottery quite a bit.  Not large amounts, but I had selected some numbers that were relevant to the family and I’d donate five to ten bucks a month.  This week, when I had built up enough stamina to open up the computer and check on a few things, I was looking at my bookmarks and saw the “Texas Lottery” link.  But this time, I had no interest in it whatsoever.  Not even a curiosity to see what the jackpot might be.

July 4, would be my fourth holiday spent in the hospital.  But I am alive.  I have never been so happy to be alive!  Ever.  I thought I got it.  I thought I was living for the simple moments, but I discovered that there is another level.  My buddies and some family would come to visit me and even though it would zap my energy, I loved every moment with them.  It is hard to explain, but I had come to accept that I survived a major traumatic event.  The love and support of my community was almost palpable and I pledged to never take any portion of it for granted again. God truly saved me and I have no doubt, as previously mentioned, that there were angels and miracles involved. 

Certificate of flag flying in the F-16

The morning of July 3rd, I woke up with stomach distention and without a bowel movement.  I didn’t feel comfortable eating breakfast and filling my stomach with no predictable output from my intestines.  It was pretty painful even considering all the other issues that had been going on over the last week and a half.   I opted for another shot of Relistor and let the games begin.  This was a triple flusher, but I had anticipated the results and wasn’t surprised by any of it.  I had so many nurses wiping my butt, I felt like I was 2 at times.  Also, I had to use a barrier cream on my butt.  Being on my back and in the chair so long made me develop a kind of bed sore, but not an open oozing one.  With the cream it was manageable and protective.

After my turbo lax shot, July 3^rd would be a good day with food intake, pain management, walking, and visitors.  My cousin David was a munitions Master Sargent in San Antonio and had retired in mid-June.  As it turns out he asked for a favor as a gift to me.  He had an F-16 Fighting Falcon from the 182^nd fly over both the Texas Capital and Texas A&M University with a flag for me.  He came and presented me with the flag and certificate and I’ll be honest, I was moved to tears.

On July 4^th, I felt actual hunger pangs. I started to eat better and they would slow down the big gravy TPN nutritional bag.  However, there was still no bowel output which at this point were only stimulated by shots.  My night nurse gave me a glass of prune juice and finally, around midnight, I started to fart.  The relief was amazing. Even though I still had plenty of gas and a somewhat distended stomach, it was a start.  And the feeling was almost indescribable.  I wish I could do some sort of comparative video collage of having a splinter removed, hole in one, watching first child born, getting married, hitting the game winning walk off home run and any number of other things that make you smile years after they occur.  For a fart…technically several.  But it was like that. 

Before you judge on this one, consider that I’m bloated and I am in the hospital for a rupture.  Trust me, you don’t want to go through that ever.  So when something happens to alleviate those feelings, you are pretty stoked about the event…even a fart.  Finally on July 6 I would have three movements which were not induced by a shot or a pill.  I could finally eat and feel confident that it would pass naturally. 

As an aside, I had a lot of time to watch cable and check out a few movies.  I don’t want to artificially extend this blog another two pages to fit in correlations of Tombstone, Field of Dreams, The Punisher and Full Metal Jacket to name a few of the movies I watched.  But it would be easy to link my life, family, and experiences to some point in all of these movies, which I guess is what makes them meaningful.  By the way, if you are looking for a good binge watch: Shooter on Netflix/AMC is pretty awesome.  It uses the Marky Mark movie and takes it to another level turning a two-hour movie into a 10-hour series – so far.  But it shows his love for country and family as well as his unmatched talent as a sniper.  You have to have a little suspension of disbelief, but it is worth the watch.

I would also like to thank and say how proud of my wife I am.  Nita has kept the house running as though things are normal while dealing with work, technology issues, a zillion questions, a husband who almost died, and summer camps.  She has shown everyone what a Rockstar she is and I am lucky to be her husband.

I have some amazing news.  In the “what else could possibly happen” category and If you still aren’t convinced that this has been anything short of a miracle, try this on for size. 

Here is the deal, I have mentioned that statistically I thought this was going to be my last trip around the sun with all of you.  There just wasn't a path (outside of a miracle) to staying alive many months longer.  But with all that has gone on these past two weeks I felt that it wouldn't be crazy if something ELSE miraculous happened.  I don’t mean it in an expectation or entitlement sort of way, just that if I was going to be called home, it probably should have happened on the 22^nd.  I told Nita that I have felt the embrace of God and wouldn’t be shocked if one of the doctors came up to me and said, "We can't explain it, but..."

Well, for shits and giggles I asked one of the doctors to run a CEA score.  On the morning of July 5^th, my doctor came in and said that he ran it and it came back as a 10.0! Down from 45.4 on June 5th.  The doctors and nurses with oncology experience at St. David’s were all shocked and staring at me like they were witnessing something beyond medicine.  They were outwardly elated but I noticed the casual exchange of glances that were in the realm of shock.  There were even hugs and tears.

Before we get too crazy, this is just the blood marker score and not a CT scan measuring actual tumor growth or decline. But it is a time for rejoicing nonetheless. I cannot tell y'all how amazed, humbled, blessed, and honored I am to be on this path.  All of the other stuff has been worth it.  I love you, and hope to see y'all soon. I should be discharged on Friday July 7^th and am looking forward to getting back home.  I am still obviously working a few things out with my bowels, foot and ankle swelling, stomach distention, as well as a few other things...but I am alive.

All those thoughts and prayers were answered this week.  I refuse to discount the events I’ve been a part of, nor would I consider it “normal” or “lucky.”  I love and appreciate everything you have done for me and am looking forward to seeing you folks around, whether it be an Aggie football game, community pool, shuttling the kids around, or just walking the dog in the neighborhood.  The book should be out by the end of July (the first year) and I’m looking forward to that one.  There will be some signings for those that are interested.  But this year certainly seems to warrant another one.  Let’s see how it all goes. 

But for now, I have never been so happy to be alive.  God bless you all and may you never lose faith in the face of adversity.  Find courage and strength where you can and never ever give up.  TeamMarco

 

 

 

Highest Highs and of course...

Highest highs and of course…

This was reunion weekend and I chose the main event to attend.  The upside was that I wasn’t worn out from all the other tours and events, the downside is the timing was right smack in the middle of when I normally have my “pre-bedtime fits.”  Yes, around the same time each night, my body decides it’s time to purge all the little bits of saliva and whatever else have gone exploring in my lungs during the day.

So I cough and retch until both my nose (remember those pesky cricket boogers?) and lungs feel clear.  It usually happens in five to ten minute bursts and subsides unless I aggravate it by talking a lot.  Guess what you do at a reunion?  I tried to be as sociable as I could be, visiting and taking pictures with as many folks wanted to, but of course it launched me into several more fits than I normally would endure.  But a small price to pay (for me) to get to see and hug these folks again.  Some were not as comfortable.

As you would expect, especially with a class our size (576 graduates), not everyone has been following my progress and of course no one thought they would or should.  I am just 1/576^th of a pretty outstanding class filled with some amazing people.  The people who knew, immediately came up and got right to the point, talking about the blog, the book, the family, and the like.  The ones who didn’t, asked how I’d been doing and then were a bit shocked when I launched into a coughing fit.  I didn’t want to embarrass them, nor put any sort of “why didn’t you know?” obligation on them.  So I told them what I’d been up to for the last two years and that I’m just focused on staying above ground.  It was fine in both camps.

Gratuitous reunion pic

I thought I’d be able to do more by now (more later). I figured with three full treatments in the bag and my lungs clearing up a bit, that I would have a bit more energy and be able to do more.  Well, I’m really not able to do more and that is a little frustrating, but I’m not greedy, I’ll take whatever is supposed to happen in God’s time, not my time.

One funny observation I had was with my former classmates who had served in the armed forces.  None of the former military guys were concerned when I was hacking up my lungs – I guess it’s because they’ve seen death before and I wasn’t dying, so they weren’t worried. Others however were very worried about me and what was going to happen next.  Those guys just looked at me like, “go ahead, spit it up, I can wait.”  It was refreshing, not an ounce of pity.  I don’t get much pity, nor do I ask for any, so it wasn’t a complete immersion into a different environment, but it was certainly nice knowing that you could cough up whatever and you wouldn’t freak out the person with whom you were chatting.

Now that summer is here we’re trying to keep the kids in the educational groove by instituting some minor practice sessions and tying them to chores and activities.  Completing these tasks enable the kids to earn points, money, iPad time, and candy.  So far it is going well, but we are also realizing how smart our children are and how competitive.  This will be our finest plan ever, or our worst failure, stay tuned. Luckily, there are plenty of camps and sitters coming by to also keep them entertained and sneak in some book learnin.'

We also started a journal exercise.  The kids write a question and leave it on our pillow, the next day we respond and leave it on their pillow.  My first question was from Josephine, “I love you dad.  I wish you could spend Father’s Day with us instead of in a Houston hospital (sic).”  Of COURSE I teared up.  I have chemo on Monday and have to be there Sunday night due to the early blood testing.  The good news is we’ll be able to come home Monday night.  But this does not make it less gut wrenching.  Perhaps we’ll leave just after dinner.

Monday of this week I started feeling some pain in my upper left abdomen area again.  I had just taken a stool softener to lessen the effects of the pain medication and figured I’d wait and see what was going on there.  Around 4:30, I knew something was off.  So I sent an email to my awesome nurse at Texas Oncology and she squeezed me in a morning appointment.  Not unexpectedly, they checked me into St. David’s again to get a scan to see if there was a blockage, tumor, leak from the spleen, or just the spleen deciding to kill off a little more of itself.

If you remember, the spleen surgery I had in February was one of the more painful processes I’ve even endured.  Lucky for me, it was just the spleen acting up again.  No tumor, no blockage, nothing life threatening…just more pain.  So they gave me more powerful pain medication, dilaudid.  It worked great, it helped with the pain and this time it didn’t give me headaches.  However, like other morphine based drugs, it can “relax” the lungs.  Now that might sound like a great idea.  Two lungs, swinging in a hammock, sipping a cold corona, staring into the sunset over a beach.  But in practicality I don’t need my lungs to relax, I need maximum output at all times.

So that evening and while trying to sleep, my breathing was labored and I felt like my body weight was crushing them (keeping them from expanding) while turned on my side.  Further, it is a very dehydrating drug.  So even though I was getting a bag of fluids, I felt dehydrated.  I drank two big 28 oz cups of water and had very little output, and my mouth was dry.  That night was miserable.  I even had to sleep with oxygen that night. (of course, I got the cord tangled when I was switching sides, which led to strenuous exertion to unhook myself – my legs were also tethered to a circulation/no canckles device – which led to another minor hyperventilation episode). All just great fun.  We didn’t figure out the correlation between the dilaudid and my shortness of breath until the next morning.

The decision was made that I’d rather have the less effective Vicodin and be in a bit more pain, but be able to breath better.  I wonder if you had a survey on whether people would rather: breathe easier and be in more pain, or have labored shallow breaths, but less pain; which they would choose?  I’m guessing many would pick the pain killer, all except those who have ever had a breathing issue before.  Those folks would take the breathing 100 times in a row.

On a lighter note, it was nice getting back to 3North, the wing of the hospital where the nursing staff seem like old friends now (I even know about their families, careers, medical histories, and lots of other stuff).  Many of them were there for my initial surgery on August 31, 2015.  The Supervisors, RNs, and techs all filed in to say howdy and check on me.  It was nice.  I also had a few visitors swing by and even got some flowers.  Other than the breathing debacle, it was a pretty nice stay.

So what was the point?  Well I ended up getting two CT scans, one of the abdomen and one of the chest.  The first showed the spleen being a little butt head again, and it also showed that the liver tumors have grown since the last scan. The lung pockets which had given me so much grief had grown a bit smaller, but the actual tumors have not significantly changed in size.  “But the CEA score is lower?”  My question exactly!  Apparently, the CEA is a data point showing cancerous activity and the trend is going down.  The growth may be slowing, but not stopping.  Reminding me of the old joke about the Houston police officer who pulls a guy over for rolling a stop sign.  The driver argues that he slowed down enough and that is essentially the same thing.  The policeman pulls out his night stick and replies, “Tell you what, I’m going to start beating you with my nightstick.  You let me know if you want me to ‘stop’ or ‘slow down.’”

This is going to be a no-joy blog when it comes to the numbers.  Only because I was unable to get any definitive answers on what might be going on versus what we need to change versus what are we able to change.  I’m going to Houston on Monday and will get another infusion anyway.  Let’s hope that someone might have some answers by then or by the end of the week.  My Houston oncologist scheduled a meeting for us Friday afternoon.  I believe my Austin oncologist called them and they are coordinating on a potential alternative treatment method. 

To be even more blunt, my Austin doctor called me Friday morning (today) and matter of factly stated that the FulFox is not showing any reduction in the tumor size, which should be the goal.  As stated earlier, we threw so much at the pneumonia earlier, that whatever combination finally broke through and enabled another couple of open airways. 

But the cancer is not being killed.  He said the scans tell more of the tale than blood tests.  His advice is to go to MDA and look at another treatment option, and with my improved lung capacity and oxygen levels, that immunotherapy might be back on the table.  We will pray, and we will hope we are guided in the correct direction.  So I have no idea what is in store for me next week.  Apparently as I have often joked, I don’t feel better, I just feel less worse than the really shitty times.  My lung gains were just being able to breathe better than when I was at death’s door.  So I have that going for me, which is nice.

I still feel like I have work left to do.  I will go into this in as optimistic a way as I can.  I will continue to have faith that there is a treatment option that is right for me and we will find it when the time is right.  I feel like I’m still functional enough to add value to the family and my friends.  Kind of like the friend who doesn’t have a truck so he can’t help you move, but can tell you the most efficient way to get your stuff done in the fewest number of trips.

I had a lot of friends visit this week and when you add in the reunion, that is a huge number of folks with whom I was able to catch up a bit, hug, and tell them that I loved them.  A dear photographer friend came by to shoot the back-cover photo for the book.  We are definitely getting closer and I’m pretty sure it will be out before summer is out. I feel blessed, lucky, and honored to have been so close to so many amazing people in my life.  I, of course, think my children are spectacular because they are. ;)  And I continue to enjoy life’s moments as they come. 

Nita took the news pretty hard this morning, but I reminded her...we’ve been here before.  We’ve thought that there was no out, nothing left, and we were at the end of the rope, only to find another option.  So I am not afraid.  I will have faith that like those other times, we’ll find a way out.  Nita asked me if I could change anything from my life what would it be…I replied, “not a thing babe.  I wouldn’t be with you, have the kids we have, friends we have, or any of it, unless things went exactly as they went.”  All of this has been worth it for the time I have been given to spend with you, my friends and family!  God bless you, Happy Father’s Day, and enjoy the U.S. Open.  TeamMarco

The Pendulum Swings

The pendulum swings

 

I loved Edgar Allen Poe when I was a kid.  My mother introduced him to me when I was younger and perhaps this is why Josephine loves Halloween so much.  I used to consume his stories: The raven, Tell Tale Heart, the Pit and the Pendulum, they were fantastic.  Now I probably watch movies more than read because of my body’s pendulum swings.  And reading glasses put strain on the septum which causes another issue, but that is a longer explanation.

Hour 3 of our 15 hour day at MD Anderson Monday

After our big 16-family holiday at the Marriott we headed off to Houston for chemo.  On the upside, our hotel room was very nice.  On the downside, the hospital/infusion room they checked me into had a bed that wasn’t fully functional.  I’m not trying to sound ungrateful, but this was bad.  I could feel the bar under my back as if there were no mattress.  It was like being on a really bad couch bed in college.  I told the nurse (who was new) and she said it was supposed to be like that.  After about five and a half hours of repositioning, twisting and contorting, I just couldn’t take it any longer.  I asked another nurse if he would just sit on the bed to validate my theory.

Once he walked into the room and clicked a few buttons, he said that the mattress wasn’t inflating.  So they moved me to another room for the last four hours of the infusion.  I can’t believe I just took it for so long.  Actually, I can.  My tolerance for the little things has definitely changed and I try to focus on the big stuff.  The good news is although the chemo was hard and didn’t feel good, there were no incidents, rashes, or reactions.  We made it through and I left with my handy pump around 11pm. 

This was a hard one.  We slept one more night in the hotel instead of trying to drive back the same night.  The following days were tough on my stomach and joints.  I think with all the packing and unpacking, driving, and everything else, I was just worn out.  The good news is we were able to watch a few fun movies.  One of the greatest movies, in my opinion is Tombstone.  There is a great line near the end when Wyatt is visiting Doc Holiday in the sanitarium.  Wyatt is explaining that he wants a normal life and Doc retorts, “There is no normal, there’s just life.” 

That made me think a lot about my own situation.  I certainly have had varied and dynamic experiences.  I’ve been able to witness and participate in a bunch of different activities from sports, to art, business, travel, kids, and everything in between. 

I think my cancer has actually helped me grow more empathetic than I ever was.  Previously I looked at things through a certain lens and figured I knew the score, after all I was a pretty smart guy.  Now I understand that I have no idea what someone else might be going through and for me to judge superficially based on a quick observation may not lead me to the correct conclusion. 

On Tuesday night, I didn’t feel like getting off the couch for dinner.  So the family joined me for a fun family movie night.  We watched The Sandlot, one of our family favorites (and perfect with the College World Series looming).  There is a scene where Smalls hasn’t yet learned to play baseball and runs the ball in to the pitcher from the outfield.  The kids were laughing and I asked, “What do you do with a ball hit into the outfield?”  Immediately and in unison they both shouted, “Throw it to second base!”  I was so proud (don’t get technical; at 6 and 8 years old, that is where you throw it.  There is plenty of time for double cuts on cinch doubles with the first baseman trailing the runner).  It was another of those moments when you know they are going to be okay.

Now that school is out, the kids brought all their stuff home and there were journals about their “favorite” this and that.  Turns out both Josie’s and Connor’s favorite sport and hobby are baseball.  Now neither child is exceptionally gifted athletically.  They are adequate and can run without falling over, but are not elite.  But I had a strategy early on that I would not burn them out by force feeding any specific sport or drill into submission in order to live vicariously through their play.  Instead, I chose to try to help with steady improvement in small doses, focusing on the fun of the game.  Well, I’m not sure if my strategy worked, my prayers were answered, or my kids are just awesome, but they love baseball and that is my dream come true.

The book is coming along nicely.  I’ve already gotten some cover proofs to approve and I think we are close.  It is kind of exciting that I will likely get to see it through, it was looking like a posthumous publication for a while.  I don’t know how well it will do and frankly, I’m not that concerned.  I just know that my friends and family (and more importantly my children) will have something to remember.  And they can see how I handled the adversity of my first year dealing with cancer.  More importantly, I hope it can help some people understand what it is like being both patient and family caregiver.

Speaking of the cancer, I think we might be making a dent.  I can tell you that my lung capacity has improved…even more over last treatment.  I am coughing less over the last few days and am able to sleep better and in more positions.  If you remember there was a time when I could only sleep on one side and at a slight incline.  The pendulum portion is my joints and body are really aching.  But my buddy Pete said that my voice actually sounds like my voice again, which is nice, I suppose.

I have mentioned previously that the old joke is: “if the cancer doesn’t kill you, the chemo will.”  It chips away at your body, making it harder to do things like walk, stand, and move around.  Further, the mucus build up in my nose is almost impressive.  I blow out these cricket sized boogers that the kids love to see (don’t judge).  The boogers are exacerbated by use of my reading glasses, so I try to use them sparingly.  But when unattended they lead to the coughing/retching fits we all know and love. The side effects will always be there, but I can take them.  No one will accuse me of taking the path of least resistance when trying to stick around for the family.

But on the plus side, my CEA score is now 45.4!  If you tell that number to a newbie cancer patient they’d probably faint or start sobbing.  But I was at 60 two weeks ago, and what I have learned in the last two years is that trends sometimes mean more than raw numbers.   This is a GREAT indicator of efficacy.  It made more than a few people pretty happy last night when I shared it with my tribe.  Because as stated a few weeks ago, the statistics were not on my side if you know what I mean.

Even though the chemo sucks, the alternative is definitely less attractive, isn’t it?  So I will shuffle around, grin and bear it.  Because I am alive and I’m enjoying my family, my tribe, and life.  In fact, I’ve got my 30^th high school reunion coming up this weekend.  I clearly cannot attend all the events or I’d be completely worn out, but I will attend the main event.  Though my body is feeling somewhat worn down, my lungs and ability to speak for longer durations seem to be improving.

That will come in handy because I have a feeling I’m going to do way too much talking on Saturday night.  I hope that everyone understands that when I run out of juice, or if I lapse into a coughing fit, it is what it is.  I am also looking forward to this event because I have zero grudges, all sins are forgiven, and I have nothing but love and good memories in my heart.  I don’t have scores to settle, there is no one to ignore out of some petty ridiculous event that may have happened 30 or 20 years ago.  I am a clean slate and hope that most will approach me in the same way.  I am clearly not implying that I was perfect or wasn’t a shit head to people.  I was.  But I let all things go when I got cancer.  I figured I had too much poison and baggage in my body to carry that extra burden.  Cancer is heavy enough.

It has also helped in our marriage.  Once I stopped piling expectations on to the family and simply started enjoying my family for who they were, things not only got easier, but better.  Sure my wife is still late for almost everything, but she is a rock star!  She puts up with me and she makes everything around us better.  My life has had many twists and turns when it came to dating, jobs, school, sports, and the like.  But I fully believe God put everything in my path exactly when and where I needed it.  There were lessons for me to learn, challenges to overcome, failures to endure, and victories to be had.  I can never fully explain how truly blessed I am.  But when I hit my knees each night, there is no lack of gratitude.

Even though my doctor is what Nita calls “cautiously optimistic (I call it pessimistically hopeful)” I think things are going well.  I think he is legitimately surprised at how well the desensitization treatment is going.  And truly, I didn’t anticipate I’d be doing this well during this time.  I figured we’d be on the downward slide, but still had faith that something was on the horizon.  When the trial fell through, it took a lot of wind out of our sails.  But we prayed, stayed faithful, and decided that God knew what was best for us. 

Then lo and behold the pendulum swung.  The body aches, but I can breathe, move around the house more effectively, shower, sleep, eat, and do many of the things I clearly took for granted just a few months before.  So far, my mind is still humming along, although I am starting to forget little things.  I make notes to myself or ask Nita to send me emails to remind me of things.  But those are little things.  And for the record, should I pull through this whole ordeal, unlike Johnny Ringo in Tombstone, I did NOT make a deal.  It would be legit.

Picture from our 1987 senior variety show - the Tex-Mans

So here we are.  About to attend a reunion to which I was actually reluctant to purchase advance tickets a few months prior.  Watching my children have a wonderful beginning to summer.  Breathing in the warm laughter my wife and kids so regularly provide around the house.  Technically summer is the middle of the year with fall and winter to follow.  I’m not sure what the timeline is for me, but I am grateful for the time I have been given.  Remember to enjoy each moment, because the next one is not promised to anyone.  Savor the now, it can change the way you look at everything.  May God bless you all and may you enjoy this wonderful season with your families.  I know I will, no matter how long it lasts.  TeamMarco.

 

A Tribe Called Balcones

A Tribe called Balcones

 

This past weekend was Memorial Day weekend.  One can always see someone thanking a veteran for their service, even though the holiday was meant to honor the dead.  On one hand, I personally don’t think it’s ever a bad time to thank a vet for his or her service. On the other, I wonder if it’s ever taken as a backhanded compliment like, “well, you came home, too bad, but thanks for getting in the fight anyway.”  I doubt it, but more importantly, people come together, celebrate those who served, and remind us about what made and continues to make America great and free. 

This was the last week of school for the kids.  Together about 16 families came together and decided to meet at the JW Marriott in San Antonio…unbeknownst to the kids.  It was hard keeping 32 adults from spilling at least a portion of the beans.  The kids were all surprised.  It was pretty fun picking up the kids up an hour early on the last day and telling them we were getting straight on the road for vacation. 

Part of the Tribe while I'm trying to write this

They were extremely excited at the prospect of seeing all their neighborhood friends at a waterpark and hotel/resort.  Once we got to the hotel, the play was non-stop and the moms and dads all started partying and having fun.  I was actually quite worn out from packing up the car and unpacking.  I took a small nap and my back was killing me.  So I holed up inside the hotel and tried to recover – of course with a few coughing fits thrown in.  I stepped outside a couple of times to check on the fun and pitch a few washers.  I felt like Punxsutawney Phil just coming out to check my shadow.

The guys came into the room to catch a bit of the spelling bee and occasionally we’d check the basketball score (not sure which was more exciting).  In my state, I couldn’t speak for long, it would launch me into a coughing/retching fit.  So I was the weird kid in the corner who just stares at people.  But luckily when you travel with your tribe everyone understands and gets it.

After my first half day and night mostly in the room recuperating, Nita asked if I was having any fun.  I told her (with all sincerity) that I was just happy to be there.  And I meant it.  Just a few months ago, I wasn’t so sure that I’d be able to attend.  And I mean that in the way you first thought it.  Many of my friends also thought that it wasn’t a certainty that I’d be there.  In fact, at a friend’s surprise birthday party on Saturday night I was told how much better I looked than just a few weeks prior.  Some were even worried that it might be the last time they saw me upright.

They were right, I really felt that right before that first dose of the FulFox, that this was now or never time.  If I didn’t make a significant improvement in a very short period of time, my cousin Robert might become my new and last chauffer (he owns a funeral business). Thankfully it did work.  After two weeks, I could feel the difference in my appetite as well as my lung capacity, energy level, and functionality.  For example, previously taking a shower was tough.  Our shower is a complete enclosure, I think it used to have a steam function in the mid-80s.  The good news is that they installed a window in the shower wall. 

It mattered because during the worst part of my lung issues, I could barely stand being in the shower.  The steam which used to be a nice soothing thing, now was sticky, thick, and heavy to breath.  Holding my head under the water to rinse the soap from my face and head took more breath than I had in one go.  So I had to do it in several spurts, frequently moving my nose and mouth to the window to get fresh air.  It was kind of miserable, but I didn’t want to complain or alarm Nita or the kids.

Josie lost a tooth on Saturday afternoon

So in addition to being useless around the house I was also stinky, reducing my showers to every other day.  After the shower, when I dried off (and there isn’t a lot of me left to dry off), it would take a few minutes to catch my breath again before I could complete my morning routine.  Getting dressed also took energy and effort.  What this has taught me is the lessons I learned as a young athlete about pushing through the pain to get to the finish or whatever has been a help and a hindrance.  A help with some of the side effects and nausea/fits.  A hindrance when I don’t listen to my body when it is time to take a break.  But I’m getting better at picking my battles.

All that has changed dramatically in just two treatments and a lot of answered prayers.  I can now shower, keep my head under for the rinse, and do all those things that we all take for granted.   So when Nita asked if I was doing okay and was glad I came?  I really meant it when I replied, “Honey, I’m just glad to be here in any capacity.”  So although it might take me a bit more time to recover from what you would consider normal activities, I am more than pleased that we came.   Plus the whole tribe takes care of us and the kids.

Nita tells stories about her father growing up on a block with all his cousins and big Italian family.  Most of them revolved around group play, group parenting, and multiple first aid stations.  I thought it was a cute concept that was rare and possibly non-repeatable feat.  But we are actually living in a similar situation.  Our little community looks out for each other and the littles. So while I was in the hotel room recovering, my kids were running around with a bunch of their friends and I knew they were safe and would be corrected if they got out of line.

The big talk for the last few days has been my CEA score.  On Wednesday I went to get some fluids and they ran some bloodwork on me.  I requested they also measure the CEA level.  It takes two days since they farm it out to another lab.  Anyway, my normal nurse called and said that she wouldn’t be there on Thursday, but that her back up was instructed to provide the number no matter what it was. 

When I called, they didn’t have the number quite yet so they promised to call back.  So I’m loading up the car getting ready for our trip and the phone rang.  I knew it was them. The poor nurse started stammering to spit out the number and said, “50.1” I replied, “OH THANK GOD!”  She was both surprised and put at ease.  I then told her my latest number at MDA was 60.1.  Not a bad dip.  It certainly was a nice validation of the improvements I’d been feeling around the house.  I was concerned that perhaps the lungs cooled down but the liver might spike, and my white cell count is still high.  But for the number to go down that much after two, well It made the trip a little happier and my chemo on Monday easier to look forward to.

Last time the chemo was pretty rough on the third day.  But with the scores dipping like that, and the ability to make a trip with my family, I will take it and not complain. Besides I have access to the best doctors and technology right now.  Unlike some of the folks decades ago.  I mention this because the other night Nita and I were watching an old war movie (one of the best parts of Memorial Day weekend), it was called Destination Tokyo with Cary Grant.

In this movie,  set in WWII, a poor sailor aboard a submarine had acute appendicitis.  The only medical staff on board was a medic.  They happened to be passing underneath a Japanese warship so surfacing was not an option.  Anyway, the conversation between Grant (Captain) and the medical guy was pretty hysterical with Grant’s final argument being, “Do it, you have books with pictures, don’t you?!”  I could not imagine my situation under those circumstances.  I suppose it’s another thing for which to be thankful.  Since it was a movie, it was a success and they even thanked God and prayer for the success.  The good old days for sure.

Hard to see everyone, and even harder to corral them for a picture

Friday, as you well know, I was unable to complete the blog.  We went to the water park and I was surrounded by what our clan calls my “sister wives.”  Many of the lovely ladies who ran the committees for my tournament and dinner in December were there.  They fussed over me and the family and made sure we had everything we needed.  Although it was distracting, I wouldn’t trade them for anything in the world.  It truly makes me feel like when the time comes that Nita and the kids will be more than taken care of.  Unfortunately, I got worn out pretty quickly and had to return to the room for a nap and technically to just cough and retch a bit.  It happens after meals and at certain times of the day.  So I really wanted to save the tribe from worry.  As I’ve stated in previous blogs, it isn’t easy to watch, even medical professionals look concerned.  My wife and kids are used to it, but still ask if I’m okay or if I need anything.  Between hacks I usually give them a thumbs up until it subsides.

Friday night we had a glow party in one of the lawn areas of the resort.  It was really cool.  The kids were loving it and presumably not just because they were sugared up and it was about 2 hours over their collective bed times. It was so big and cool that you could see it from all over the resort.  The problem for me was it was about a quarter mile from our hotel room.  That happens to be quite a haul for me right now.  Luckily, I didn’t wheeze or cough when I got there.  Perhaps Divine intervention allowed me to just enjoy the families and my kids running around with glow sticks, necklaces, glasses, fidget spinners, balls, balloons, and hair clips.  You wouldn’t believe all the things that glow in the dark, but I bet we had them.

So I wonder if the other moms and dads feel sorry for me.  I hope not, I am alive and watching my family have a wonderful vacation.  Just because I can’t join the dads for golf, or do waterslides with the kids doesn’t mean I’m not having a blast watching my friends and family do them.  Participation means many things I have learned.  I feel truly blessed that I am able to continue to guide, parent, and help my kids grow, learn and play.  I am here.  I am present, and according to the CEA score, things are getting better.  I have no delusions that this is sustainable forever, but it certainly may have bought me another summer with the family.

The kids talk about death and cancer somewhat freely now.  I think it is good because when the time comes, there will be sadness but no shock.  I fully believe we are raising great kids who will be sweet, tough, and wise beyond their years.  Nita and I received the sweetest note from Josephine’s teacher at the end of school.  She said so many wonderful things about Josephine’s cognitive abilities, but was mostly impressed with her empathy and wisdom (for a six-year-old).  It was touching to be sure.

Pancakes and bacon, breakfast of champions

So I feel like we’re doing the best we can and making some good strides.  Nita of course is a Rockstar and keeping the house steaming on course.  I don’t want to go yet, but I do feel like the things I worried about almost two years ago are settled.  And on the plus side of the P&L every time things start to go a little south on us health-wise, things seem to turn around for us.  I usually have to suffer a bit, but I also usually end up learning another lesson about being there, parenting, life, attitude, and certainly gratitude.  Not an unacceptable trade off.

Thanks to all of you who have helped me learn and grow over the years. Thanks so much to my medical team who use more than pictures in a book to treat me. Thanks to my kids for being sweet and amazing.  Thanks to my wife for constantly overachieving and keeping the family humming along.  Thanks to my tribe for being Johnny-on-the-spot anytime we need anything.  Thanks to my mother for my upbringing and all she has done since.  Thanks to God for allowing me to learn and grow more in the last two years than perhaps the first 46.  Finally, thanks to all of you for your thoughts, prayers and support.  God bless you and have a wonderful summer.  I hope you too can be present for the important things (hint – they’re all important).  TeamMarco@austin.rr.com.