What does victory look like?

This weekend was filled with cold, wet baseball games again.  I loved watching the kids, hated the coughing and wheezing, but loved the baseball.  The kids are improving a little, but having maximum fun!  That makes my heart sing.  As you are all aware by now, we called off the immunotherapy clinical trial and are back on the FulFox chemotherapy regimen, although this time at a reduced pace in diluted form.

Josie's teacher braved the cold to watch Josie's tee ball game

This week was a struggle as I felt my lung capacity shrink a bit.  It is crazy how much I took for granted even with the pneumonia.  At least then, I had coughing fits and no appetite, but I could walk up and down the stairs without having to literally stop for five minutes and catch my breath.  Let me tell you, that reduces your ability to do almost everything.  I went to pick up the kids from school the other day and walking from one end of the house to the garage, get in the car and back it out…I had to put it in park for a couple of minutes until I was back to slow steady breaths.

I know I still have mucus and should try to do more to cough it up, but it is hard when you feel like you are coughing and retching plenty during the day already.  You don’t really want to artificially invoke the loss of breath, hacking, spitting up lung phlegm routine when you can avoid it.  It is so much easier to try to keep your nose clean and dry while taking short shallow breaths.  I know it sounds counterintuitive, but walk a mile my friend.

Connor gets to speak with the APD helicopter pilot

Keeping your nose clean is key.  Once your nose gets congested or starts running, then you have to breathe through your mouth.  When that happens, any microscopic particle or saliva will (not might) WILL find its way into your airway, which you must then also cough up.  This creates the retching when your cough isn’t strong enough due to diminished lung capacity, to get it all out.  So you get a hanger which is half out and half in.  That triggers the gag reflex.  That makes your eyes water, which makes your nose run, which means you can’t breathe effectively through you nose so…you breathe through your mouth again, which pushes your little friend deeper.  Which means you have to cough more or harder to get it out.  Remember, you can’t just take one or two super deep breathes and be back in business.  You have about 2 full minutes of labored breathing to get to the new normal.  So, keep your nose clean and dry (should this ever come up).

These situations are not solvable with oxygen or inhalers. You just have to ride it out.  It is as distressing to witness for the adults as it is the children.

The kids are really REALLY aware of the situation right now.  We’re having a lot of discussions about death and next steps.  Watching the above situations too frequently possibly has led to these things.  At dinner the other night Josie asked if something happened to both of us what would happen to them?  We explained that we had wills and there were some nice families that we’ve spoken to that they would go live with.  Of course, we didn’t tell them who or the draft order, but hopefully put their minds at ease that at least there were plans in place to help them along every step of the way.

At dinner Wednesday night, we had some funny playful banter.  It was helpful because the normally rock solid Nita was a bit overwhelmed at this point in the day.  Well Connor is on a big game hunting kick.  He was asking how much it would cost to go on a safari to kill a Bengal tiger.  Josie protested and started coming back with some arguments around money, endangerment, etc.  Nita asked what the tiger was for?  Connor explained about making a rug, slippers, and the mount.  Josephine then stood up and said, “Nope!  Dad says we only shoot what we eat! And if you won’t eat it, you don’t shoot it!”  Checkmate.

The next morning, I heard Nita getting the kids ready for school while I was getting dressed to drive them.  She said, “Let’s go, keep moving forward.  If you are standing you aren’t moving.”  Now these are firm daddy lines. And they came flowing out of Josephine’s and Nita’s mouths. It truly made my heat feel like it was going to work out. The lessons I had been building were being solidified before my eyes.

I often worried about being forgotten.  Now, I’m not fishing for sympathy or outreach here.  I mean that I wondered if the kids would be too young now to fully remember me as an active fun dad, instead of the bump on the couch with the oxygen tubing.  When we came to stay with our friends in Houston, it turns out our host’s mother died of cancer.  He said the thing he remembered the most was missing her.  He also has this grandiose picture of his mom as a hero.  That was the magic for me.  The kids may not only remember me, but also as a hero before they hit that tween swagger.  You know the “I hate you, let me count the ways” phase. 

So it got me thinking about quality of life.  I figure this drug is going to do one of two, maybe three things.  Remember I can only take this drug for 1 year before it starts doing pretty severe damage to the host.

1.       We win, it works, nothing to worry about. Cancer free – low probability.

2.       It slows/halts the cancer’s growth, but does not improve situation.

3.       It works to reduce the lymph and lung growth, enough to catch my breath and actually play with the kids.

Regarding 1, Miracle time.  This is 1980 US hockey type miracle.

Regarding 2, I can live with it.  If I don’t improve, have my same daily challenges, but don’t get worse, I could live like this. In order to continue to be there emotionally and watch them grow up a bit more.  But I’d still have to endure the breath catching, coughing, retching, among other aches and pains.  No problem, I can die another day.

Regarding 3, ideal.  We won’t have to wait for the scan in two months to see where we are.  I’ll have the benefit to go out and actually be a participant in the family activities again.  From neighborhood get togethers, to kid's sports, to just taking them to the arcade.  I had no idea I was even taking those privileges for granted…but I do now.

I’m sitting in an infusion room here at MDA and I’m getting my ten to possibly eight hours of poisoning.  It is funny now that I was so looking forward to this.  Who looks forward to chemotherapy?  Certainly, no sane person. But I did.  So I’m hooked up with the meds flowing and I’m thankful. Thankful to still be here, thankful to have a chance, thankful for all I have already been blessed to see, hear, and do.

Addendum: after three hours of chemo I remembered why I never looked forward to it.  Oy.

So what does victory look like? Having your kids potentially remember you as hero?  That isn’t too bad.  Being given the chance to maybe spend a few more months or years (I promised I wouldn’t joke about this, but well you know) to be even more participative in the family?  Yea that is definitely a good one.  And being given one last chance to smell the roses and continue to inspire friends and family to do the same.  I guess that does smell like victory, or napalm.   I will win this fight, any way it works out.  TeamMarco.

 

Close, but no cigar

Close, but no cigar

I think most of you felt the sense of urgency in last week's blog and realized that quite a lot was riding on my test results from this week.  It started off rough with our first appointment being at 6:00 AM and our CT check in time at 5:30 PM (only to find they were running 1.5 hours behind when we arrived).  Anyway, the phlebotomy tech missed both arms and had to send me to a more senior blood taker.  She finally hit the tap and got her 10 vials of blood.  I immediately went to the infusion department so they could run a line to my port o catheter.  At least no more arm sticks. 

6:30 AM and trying to keep a good attitude

After the port was accessed, we went to the Clinical Trial Research Center (CTRC)…where they took another 11 vials of blood.  It occurred to me that perhaps I’m not losing weight so much as I am being drained of all my fluids.   After this, we hopped back on the elevator to go get an EKG.

Now as we discussed last week, I’ve been having shortness of breath and my oxygen saturation levels were lower.  Just barely low enough to qualify for home oxygen.  I don’t use it a lot (don’t need it a lot), but it is nice to have just in case.  I even purchased a little home Pulse – Oximeter device which you put on the tip of your finger and it measures your pulse and your Oxygen saturation.  You want it to be around 97 or higher.  Mine has been hovering between 91-96 based on activity.  When I do anything strenuous, like walk to the bathroom and back…it drops to 91-92.

Wednesday, we met with the intake nurse and the doctor.  Everything on the bloodwork was good.  The CT scan did show growth in the lungs and that it was actually choking off portions of the small airways in the lower lobes (it was weird seeing the constricted airways on the CT images and definitely showed what we are up against.  This is what has made it so difficult to take deep breaths, open the airway, and get a lot of oxygen into my blood stream (which is what we all need).  At this point the doctor was hesitant.  He said that he didn’t want to put me in the trial if my lung capacity and oxygen reserve were not strong enough to handle it.  To give you a sense of what it feels like, remember when you were younger and you ran in the summertime until you couldn’t catch your breath?  Then that hot air filling up your lungs just burned until you finally cooled down?  It’s like that, but without the heat.

I brought up the irony that if we didn’t do the trial, that my lungs would eventually be taken over and shut down by the cancer anyway.  He fully acknowledged what I was saying but said he has two responsibilities. The first and foremost is to my safety, the second was the study.  He conferred with the lead doctor of the study and they asked the nurse to “walk me” around the hall, while measuring my oxygen saturation.  With just a non-vigorous walk my saturation level went from 94 to 92.  The baseline for the study was 94.  Currently, I’m out.

Back to the “what could go wrong” portion.  Well apparently, a lot.  This is not chemo, it is immunotherapy.  The doctor stated a few main points.  First, with my current lung capacity and reserve, any type of pulmonary hiccup could be fatal.  By that he means that you go on a ventilator until someone says “enough;” not exactly how I pictured the ending.  But Pulmonitis is a realistic side effect.  People with healthy lungs can withstand a little discomfort while things settle down.  I cannot.

Another issue with the immunotherapy is that the drugs get in your system and stay there for months.  You can’t just flush it out, they are there for three months once introduced.  So if the damage starts early, you are screwed (in my situation – which is why they have a benchmark for oxygen sat among other indicators). Additionally, the cure does not happen overnight.  If it is going to work at all, it will take some time to ramp up and start killing the cancer.  Finally, the study sponsors expect that each patient has a reasonable expectation of being able to finish the study over the course of 56 days.  Yep, two months.  In my current condition, with the current trial medication, there could be no reasonable guarantee that I’d still be chugging along on day 56.  Not that I would necessarily be in the back of Robert’s Hearse, but rather that they’d have to halt my study for hospitalization or some other reason.

Finally, immunotherapy attacks all the organs with the immune system.  It isn’t targeted like some of the FDA approved drugs, so you could technically jack up your kidney when nothing was wrong before, and as previously mentioned, it is tough on the lungs.

Dr. Kee, Nita and I went over several options and then another cropped up, so there is no reason to completely lose hope at this point.

1.       I am to come on Monday April 24.  I am still on the trial schedule for the whole day.  If after meeting with Dr. Kee my oxygen saturation levels are at 94 or higher, then they’ll let me continue with the study.

2.       Lonsurf.  It is an oral chemo drug that has similar side effects to Fulfiri.  It is not as effective as Fulfiri and is usually used as a containment option.  (More on this later).

3.       FulFox.  Yes, I know I had an allergic reaction to it.  But it was effective.  Dr. Kee said there was a way to very slowly introduce the oxaliplatin into the body and is almost a 12-hour procedure, but it makes it safer without losing the efficacy.

4.       As we were leaving, I got a call from another clinical trial office.  I couldn’t hear them over the noise in the cafeteria, but they scheduled a meeting for me on Monday.  I think the intake nurse (who was a little shocked that I wasn’t let into the study) reached out to a peer to get me another option.

So these are my options.  When I questioned the Lonsurf option, Dr. Kee matter-of-factly stated, “Remember, Lonsurf has already been FDA approved and has gone through trials.  It is both safe and effective which is how it made it to market.  Betting everything on a phase 1 trial with no data of success yet, is still a big gamble. For the Fulfox, we’ll have to see if the Austin office has the resources to do a 12-hour infusion, most don’t have office hours that long.  I have a meeting with my Austin team on Thursday to see what they can do and what they recommend.  What we do know is that we have to do something, and quickly.

Here is the worst part.  The kids are 100% in tune with what is going on.  Both were hanging their hats on “daddy getting this new trial which will cure him.”  We never overtly said it, but it may have been implied as to why it is so important that I keep going to Houston over and over again.  Both are worried sick about me.  It must be hard with all the new equipment in the house and my appearance.  They have never seen me this thin or ineffective.  Plus, kids notice everything.

The game face has been gone for a couple of months.  Once I was unable to pitch Connor’s games, attend the campout, and had to stay home for simple neighbor’s night out dinners, they knew.  The constant barrage of coughing, hacking, and the equipment in the house make it impossible to dismiss as normal any longer.  But I gave it the old college try for about a year and a half.

Josephine puts two and two together as well as anyone within four years of her age.  She has already figured out that we’re in a desperation mode to find something to stop the progression of the cancer in my lungs.  Connor, bless his heart, was late to the game but it is hitting him very hard.  Wednesday night when I was taking him to his baseball game I asked him what was wrong?  He said, “nothing.”  I asked him was he worried about something?  He said, “YOU DAD, I’m worried about you!”  Well what do you say about that?

We started having them see people they could talk to and we’re definitely going to stay on that schedule.  Now if only my mother will do the same.  She is so concerned about me right now and has no outlet to vent or just help her organize her thoughts.  We have asked and pushed, I hope she will make the call and do it.  It will help more than she knows.  I spoke with her on Thursday and she seems ready to take the plunge now.

As for me, I’m not giving up.  Not at all.  But you do have to look back on the last year and wonder about the amazing timing of events.  Last summer we went to South Padre and to Breckenridge on subsidized trips.  Then, a quick date trip to New Orleans, just Nita and me. Then a few months later, a birthday bash in Vegas where we hit the mini-jackpot.  Then there was the living wake in December which was nothing short of spectacular.  Finally, in January our crew as well as Without Regrets funded a trip for the family to go to Maui!  One month later I was in the hospital getting the spleen surgery, two weeks after that – Pneumonia, now the cancer has grown in my lungs and there is no chance that ANY of those trips would be possible now.  Like Dr. Kee said last summer, “Do what you can when you can.  Certainly, don’t put things off.”

Thursday, Nita and I met with Dr. Netaji to go over the options we were given at MDA.  Well, he poo-pooed the trial pretty quickly.  Without going into every detail of the discussion, immunotherapy takes a long time to take effect.  So, while we’re waiting for the immune system to crank up and figure out what to do, my lung mets would keep growing and choking off more of my airway.  Plus, no matter the optimism, it was still a phase 1 trial.  When I was healthier, this was a viable option.  Now that I’m not, it isn’t.

We ultimately decided to go with the FulFox again, in a diluted longer infusion method/protocol.  It had shown to be effective, works relatively quickly, and frankly I’m about out of options.  We actually need chemo now and not something that will “eventually” take effect.  If you remember, it was working quite well until my reaction to it.  And once we start Lonspur, we can’t go back to the FulFox, so we have to do this in order.

So I still have to head to Houston on Monday to meet with Dr. Kee and sign the new protocol.  Plus he said I needed to start a steroid prior to the FulFox infusion.  Since it is a 12 hour procedure, we're going to do the first one or two at MDA, then see if we can replicate the recipe here in Austin.

If for some reason the FulFox doesn’t start making headway then we’ll switch to the Lonspur and call Hospice.  Unfortunately, the lung mets have progressed to a point that if the Fox doesn’t work, we might be out of options to stop it.  I know this isn’t what anyone wanted to hear, but I’ve been open with you folks throughout.  I will continue to fight, but I have to recognize the situation for what it is.

Physically, there are some things in my system that just plain hurt.  To add insult to injury, I think I even strained my left pec just tossing pillows or luggage around.  But that only adds to the pain of a full deep breath, my left rib cage, and other little aches and pains.  I have pain meds and that seems to control them mostly.  It helps while I am waiting to catch my breath; frustratingly after just doing the most mundane things.  However, I’m pushing myself a little to see if I can open my airways and expand my lungs.  Not sure if it will work, but I’ll keep plugging along.

Where is my head?  Well, we all knew the statistics and I was never told that there was a cure.  I had hoped for more time; and may very well get it.  But the document I signed showed 23.7 months median survival rate.  That would put us around August 15.

Before the second of three Easter egg hunts

At the same time, I cannot feel bad about the amazing life I have lived, the experiences I’ve been able to have, my loving wife and children, and my upbringing and youth.  I have really led a charmed life and I have no regrets.  I will continue to fight with every last ounce of energy and who knows, there still may be a miracle around the corner.  But as I said last week, a bit over two thousand years ago I was given the gift of eternal life.  I’m going to be okay.  Nita and the kids are strong, but may need a hand.  Let’s just pray there is still some magic in the FulFox.  God bless and wish us luck.  TeamMarco.

 

Aside: on the way back from Houston, Nita told me about the surprise party that was supposed to occur on my birthday.  Instead I was hospitalized, but wow am I flattered by the responses.  Thanks to all of you, it was quite touching.  Sorry for being the party pooper.

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.

Happy Birthday from St. David's Medical Center

Happy birthday from St. David’s Medical Center

And why not?  I spent Valentine’s day in MD Anderson getting my spleen destroyed and will likely be at MD Anderson getting chemo on my anniversary.  I suppose fighting to get healthy is better than having a party when you can’t really eat much anyway, isn’t it?  The silver lining is that one of my doctor buddies called ahead and I ended up with the absolute best nursing staff.  Two of them were the nurse of the year, to add validity to the claim.

The kids had early release on Wed, so they had a bake sale for Without Regrets, the organization that sent us to Hawaii

I have learned a lot about chemotherapy over the last year and almost eight months.  I’ve learned a lot about pneumonia in the last few days and weeks.  First, there are a lot of people who think they had pneumonia, but only had a respiratory infection.  Not that we’re keeping score or judging, but pneumonia is a full shut down of some of the little pockets in parts of your lungs due to inactivity and coagulating mucus. 

In very simplistic terms, what happens is the mucus in your lungs starts to thicken due to infection; coughing either hurts or is annoying, so to guard against it you take shallower breaths.  Those shallow breaths don’t allow full lung expansion and expulsion of the mucus.  So it sits and more layers of mucus come in to cover the pending infection.  Rinse and repeat.  The next layer is either expelled or it starts to harden with the bottom layers.  Unused pockets called alveoli which are usually happily helping supply oxygen to the heart and rest of the body shut down.  So there are fewer resources available to oxygenate your body.  That is bad.

Counterintuitively, instead of rest, activity and deep breaths are what you really need to treat yourself. When you sit or lie down on your side you constrict your lungs and therefore artificially reduce your capacity.  You give the little mucus warriors crevices and crannies to hide and stick to each other. So you need to stand, walk, move and get deep breaths into your lungs, which will cause coughing fits; but will start to expel the sputum.  That is good.  It is also harder than it sounds.  Your body is sore and you are tired.  Plus with so much less food intake, your energy is zapped.  I did not do those things, I was told to rest.  So I did, which probably compounded the problem.  Which as we can see now is bad.

Breathing treatments, oxygen treatments, and antibiotics are the most common response medically.  However, if you are lucky enough to be me, you find that four separate antibiotics do not work.  So you are hospitalized and they’ll eventually do a bronchoscopy.  They stick a tube and camera into your lungs and wash out some of the junk, take a biopsy to identify the type of pneumonia, and hopefully will be able to treat it immediately after the results are back.  Very much like the splenic embolism, it is fine immediately after the procedure, but extremely painful later.  My lungs, throat, and whole body are sore after the first night.

Breathing is supposed to be exponentially better after the wash.  That is good because my measured oxygen levels dropped from the high 90s (97-98) to the low 90s (90-92).  This did not happen for me and I was put on oxygen.  The wash was brief as you cannot irritate too much of the lung anyway.  Compounding this is (if you remember), I also have cancer in my lungs, so there is that.

Friday April 7, I had my bronchoscopy.  I was really looking forward to taking long slow deep breaths again.  And by now, my stomach has shrunk for sure.  So I will more than likely have to ease into eating larger meals again not unlike a starvation victim or those idiots who go on hunger strikes.  But I must say, I do look a lot better.  From a vanity perspective, I am just about where my wedding weight was, maybe a bit lower.  In fact, I had to have my ring re-sized a few years ago and now it is slipping off my finger. 

Once the anesthesia wore off, both my lungs and my throat were on fire. As you probably know from accidentally inhaling water or bourbon, your lungs don’t like irritants and you cough like crazy to get it out.  Well imagine doing it while your lungs were sore as if after a really hard cross fit workout.  Then the coughing to expel the loosened mucus.  Well it doesn’t just come right to the top like calling your dog. You have to work it to the top.  That means your abs and what feels like your whole body are working overtime.

A doctor from AY sent me a note stating that it might be whooping cough.  He sent all the symptoms and the process which the Chinese call the “100 day cough.”  I sent it along to my wife and a friend. My buddy was upset that the good Samaritan sent all the details.  Now in fairness to said buddy, he literally feels pain for me and my ailments, literally. Much like pregnancy sympathy pains I suppose.  In any case, I told him, that I could take the details and that I wasn’t a pu$$y.  He replied, “Hey fight terminal cancer, hey fight pneumonia, hey lose your appetite and lose almost 40 pounds, hey fight a dying spleen, hey fight whooping cough…’not a puss’ is an understatement.”  I suppose I have been thought a bunch.  But I can say this without losing face, this hurts like hell.  I have a theory that all my recent ailments are a system called, “in order to fix it we have to f…hurt you a little/lot.”

But my faith is strong, my support group is awesome, and my family is quick to bring a smile to my face.  Wednesday when I was admitted to the hospital, I missed another of Josie’s tee ball games.  Turns out she got a couple of hits, and two put outs.  One was a play in the outfield where she threw the ball in and they tagged out the runner.  Second, she was playing short and fielded a ball and tagged out a slow reacting runner. 

A dear family friend had her over for a playdate on Thursday and offered to bring her to the hospital.  Just her, not Connor.  I had a nice little talk with her, just the two of us.  She was so sweet and all smiles.  I found out later that when Nita was talking with them, they were both concerned that “Daddy may not be coming home.”  She assured them that of course I would be home and better than ever.  It is really hard to anticipate the severity of the situation in a child’s mind.  I wish I knew the right things to do or say, but I can only do my best.  Apparently, Josephine is telling everyone who will listen about my medical issues.  I suppose she is unaware of HIPPA.  But either way, we need to get her someone to talk to about this.

Nita brought both kids after school on Friday and I spoke with them each individually.  It was a nice talk as I still had the anesthesia guarding my lungs and throat.  I assured them that daddy was tough and would be coming home very soon.

My birthday is always close to the Masters and Easter. Both represent hope and life don’t they?  I won’t go too deep, but Easter is a time when families celebrate together, a time of rebirth, and reminder of eternal life.  The Masters is probably the greatest golf event there is.  And anyone (who was invited) has a chance.  Sometimes the favorite wins, sometimes the favorite falls down the stairs.  Sometimes an unlikely participant bubbles up to the top.  I always feel hope around this time of year, and this year is certainly no different.

Connor had a baseball tournament last weekend and he did well for him.  He got a hit when we needed it and even caught four innings over two of the three games.  He looked good behind the dish like his old man, maybe better than his old man.  I’m not sure if my being out there helped or hurt my situation. 

While in the hospital, an old baseball buddy of mine called.  He is having cancer surgery on Monday.  We spoke briefly and he said that my story and blog inspire him and have helped calm him a bit.  That is the goal, for you to find strength and hope through my struggles.  I willingly accept this challenge and have told God as much.

I will continue to fight, push on, and eventually win this battle.  Then I will go on and fight the next battle and try to win that one.  Rinse and repeat until hopefully I have won the war.  I hope you all enjoy the Masters, your families, and have faith that you too can overcome whatever obstacles are put in front of you. I can tell you right now, with the right mindset, you can accomplish and fight way more than you thought you could.  Trust me, you can, I believe in you.  Thanks for all the love, thoughts, prayers, and support.  God bless you, and happy Palm Sunday.