Friday, June 16, 2017

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 1/576th 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

2 comments:

  1. You are an amazing dad and husband! Happy Father's Day to you!

    ReplyDelete
  2. I just read a really good book call The Shack. You might like it. Warning, the first of the book is really hard to get through but totally worth it. It's about God's love for us. Praying. Believing. <3

    ReplyDelete