Crunch Time

Crunch time

As many of you know, I spent most of last week and half of this week in the hospital to cure the pneumonia before I could subject my body to the stress of chemo, much less a phase 1 trial.  When I checked into the hospital on Wednesday, I was down 44 pounds from the time of my spleen surgery (on Valentine’s day).  Now at home, I’m down 46.

I looked peaked, my heartrate was out of whack, my oxygen levels were lower, and I was still having a constant and very productive cough.  There really was no other choice according to my Austin oncology team. So, I drove home, grabbed a few items, and returned to the familiar sight and wing of St. David’s Medical Center.  I know I’ve gone on and on about the nursing staff there, but they really are the absolute best.  And they push you to get better too, there is no laying around feeling miserable.  They make you work, whether it is the breathing apparatus to strengthen your lungs, constant vitals, or walking the station to get air into your lungs and expand your rib cage.

The first night I was given another CT scan and they started another round of IV antibiotics.  Of course, every two hours someone came into check on me during the night to take blood, vitals, or give me a breathing treatment. I eventually learned to sleep during the breaks.  However, the hard part about sleeping this time was the expectorant (musinex – a drug designed to break up the mucus and help you cough it out).  Every time I changed from standing, to sitting, to laying, and switching sides, I would cough quite a bit; and by a bit I mean for 10 or so minutes at a time.  And I had these bags that I would spit the coughed-up mucus in.  They got heavy quickly and I went through quite a few of them.

The other thing they did was what they called percussive therapy.  They would beat on my back like a tapotement massage (it actually felt kind of good) to help loosen some of the mucus and allow that to float to the top.  This was helpful in getting the mucus out, but not helpful for a restful sleep.  Needless to say, there was a lot of coughing, breathing treatments, medications, and not much sleep.  On Friday I would have a bronchoscopy.  That is where they stick a tube down into your lungs, wash some of the mucus to break up the bigger coagulated chunks, and they also did a biopsy.

Wife and kids visiting me on my birthday last Saturday

Over the weekend, I would also learn that the days of sleeping flat and going side to side were over for the time being.  Now I have to start in a full sitting position, slowly ease the slope or angle of my head and torso, until I’m at about two to three pillows under the head.  That is as far flat as I can go and still get a restful sleep without coughing.  If I have to wake up to go to the bathroom, I have to restart the entire process.  This continued when I eventually got home.

The cultures would take a few days to grow and so the weekend was spent mostly waiting on the results, watching the Masters, and trying to grab a nap here and there.  I was also instructed to add at least two ensure shakes each day to keep calorie counts up.  Saturday was my 48th birthday and the wife and kids showed up with some balloons and treats.  Other friends also sent treats, cookies, and balloons.  It was very nice, all things considered.  Even though I was trapped in a hospital room, I was surrounded by love and support.

Monday came and the doctors told me what I suppose at this point the better nurses already kind of knew.  The pneumonia was dead.  Nothing could withstand the barrage of antibiotics and treatments I had received. The rest was just to cough out what was still in there.  The cultures came back negative for the bacterial pneumonia proving that it was gone.  But why was I still struggling with my breathing and oxygen levels?  Well, the biopsy showed that the colon cancer that we already knew was in my lungs, was inflamed/growing and had choked off a portion of my lower right lung.  It just got real.

For the sake of clarity, I did have pneumonia.  And while the infection was giving me fits, the cancer crept in and grew into more of a nuisance.  That is the short and sweet of it.

That is why the simple activity of sitting up, walking to the bathroom, sitting back down on the bed and then laying down took me two to five minutes to fully catch my breath.  It also meant that my activities would be limited.  Further, they sent me home with a nebulizer (breathing treatment apparatus) and oxygen tanks.  When I got home Tuesday afternoon and the delivery driver dropped off the home oxygen unit and the six tanks for “travel,” Connor was more than curious.  He was convinced we can use them for scuba, I had to break it to him that they aren’t the same kind of tanks.  I was instructed to take them to the kid’s baseball games and places where I might be required to walk quite a bit, or any place where my heartrate would go up and oxygen levels might drop. 

Connor's baseball team, for obvious reasons, I was unable to be in the picture this year

Josie's tee-ball team.  Again, I was unable to make the picture.

Connor had a game on Wednesday night, and although I didn’t sit on the bench like normal (I stayed in the stands instead), I stubbornly refused to cart along an oxygen tank.  So, I struggled to catch my breath for about five minutes, but eventually did.  The game went on, Connor got a hit and even caught another inning, and I made it through.  I’m pretty sure my coach pitch – pitching days are over for the season. 

I dug up an old high school Legion ball picture

Like father like son

 

It is harder than it sounds to be in this state.  I have to try to be pretty efficient with my trips just around the house.  Walking from our bedroom to the man cave and back causes me to sit and catch my breath.  The kids are worried now and are asking questions about me dying.  I suppose it makes sense and I had hoped that this moment would be quite a ways off.  I can tell you this now (and promise you Nita) that I will no longer joke about me flaming out this year.  It was funnier when it wasn’t so – I’m not going to say probable, so we’ll say possible.

Thursday night Josephine had a kindergarten musical performance at her school.  Walking from the parking lot to the school was quite a chore for me, but of course I wouldn’t miss it for the world.  I also didn’t bring the oxygen tank because, believe it or not, I don’t need the extra attention.  But I eventually caught my breath, hugged a few people I hadn’t seen in a while and enjoyed the show.  Nita took the kids to a dinner/playdate with many of our neighborhood friends afterwards, while my mother and I came back to my house and had a small dinner and watched a movie. I was smart enough to get some O2 while at home and my levels are in the acceptable range.

Josephine was a wolf at her kinder musical program

The good news is the folks at MD Anderson and my Austin Oncologist are fantastic.  With this newfound information, we now know that the only thing that will get my lungs back in working order (at least functionally close to before) is if I get into the trial and it is able to shrink the tumors and nodes in my right lung.  So, Tuesday I am scheduled for…you guessed it another CT scan, bloodwork and a meeting with Dr. Kee of MDA.  Then I will begin the trial on Monday, April 24.  I didn’t lose my spot!

Both teams are keenly aware of my situation, the severity, and are working with the schedulers to get me into the system as soon as possible.  The reason for the CT prior to the trial (even though I’ve had four in the last month), is because the trial requires a baseline starting point of tumor sizes in each organ and it must be within 28 days or fewer.  The other scans I’ve had have been very specific around my lungs, spleen, etc.  But I can make it another week and a half in this state.  I will pray, keep doing my home treatments, and follow the doctor’s orders. And I’ll stop to catch my breath when I need to.

As for the children and their concerns, we are taking them to a Wonders and Worries (an organization to help and educate families who have parents with terminal illnesses) clinic this weekend and they have both seen counselors in the past two weeks.  We’re going to schedule the counselor visits on a regular basis going forward.  Josephine already stated that she felt great talking to someone about her issues and anxiety surrounding my condition.  I suppose it didn’t seem as real before since there were no obvious outward signs of the disease.  This is the first time that I have been severely limited and the children are certainly justified in their anxiety.  Hell, I’m anxious.

But I still believe something good is going to come from all this.  I’m learning new lessons, taking less for granted, and smothering my kids with love, hugs, and kisses. I wish I could do more with them in public like take them to stores, arcades, or other fun places, but I have to pace myself.  I firmly believe that this tumor will shrink, and I’ll be taking big full deep breaths again within a few months.  Then I can do those things and they will be much sweeter than they were before, I can guarantee that.

So where is my head?  Very much like my family, I’m anxious too.  My faith, however, remains unchanged, I am not discouraged, but this does suck.  It isn’t something I’d wish on anyone.  I’ll gut through this, like all the other treatments, and I intend to persevere.  With the help of God, I can make it.  With the help of my friends, family and neighbors, we’ll take care of the little things that need to be done while I focus on healing.  It is just another test I have to pass to get to the next level.  I hope I’m doing it right, I’m certainly trying to do my best.  Thanks to all of you for your kind words, your prayers, your offers of help, and being part of our lives.  May God bless you, and may you have a happy Good Friday and Easter Sunday.  This weekend is a not so subtle reminder that no matter what, I have been given the gift of eternal life.  Regardless of the outcome, I’m going to be okay.  That, I will never take for granted.  TeamMarco.