Decisions, decisions

Decisions, decisions

This was another week full of guard rail to guard rail emotions and activity.  Monday night Connor had a baseball game.  I took him, but of course was unable to pitch the game.  After all I had just gotten home from the hospital two days earlier and was in no shape to be bouncing around on the mound.  It was hard to catch my breath even on the bench at times, but I wouldn’t have missed it.  As luck would have it, Connor got his first hit of the season and even scored a run.  He was so excited and I was so proud of him.  It was a fantastic moment.  Nita missed it because concurrently, Josephine had a practice and Nita took her to that.

Skipping quickly to Friday, as soon as we got home from MD Anderson (MDA), Connor had a baseball practice.  I took him and intended to just sit in the stands.  But, of course, I had to help and did what I could do.  I wore myself out a bit too much and had a few coughing fits that even concerned the kids.  I know I need to take it easy and let this pneumonia heal, but it is hard to willfully miss out on your children’s stuff.  That is the entire reason I’m in this fight after all.  To spend quality time with my family.  So it makes me feel like I’m not fighting when I miss things like this, but that is my heart talking, not my head.

Connor standing on second after his first hit of the season

 Okay, so Wednesday we drove to Houston so we could be there for my early appointments on Thursday.  Unfortunately, that meant missing a game on Wednesday night in which Josephine got two hits and scored two runs.  She even bowled over the catcher scoring her second run.  Thankfully some friends who have kids on her team sent us pictures.

Josephine bowling over the catcher to score her second run

We arrived at the townhouse where we were staying around 8pm on Wednesday.  We stayed with two nice people whom we had never met.  One of the Aggie Yell guys (Beer Donkey) and his wife graciously invited us to stay with them and they were fantastic hosts.  It is hard to believe that there are still such nice people out there who will offer their home to strangers to help.  Now Sterling and Katharine have been reading the blog and on Aggie Yell, we’ve had a few “discussions,” but we had never met face to face.  So thanks again and God bless them.

Thursday morning, I had bloodwork and an EKG scheduled for 8:30 AM.  We arrived on time and they took about 8 tubes this time.  They took another 8 tubes for the trial intake on Friday.  I swear my arms are starting to look like I should be in Guns N Roses. 

Since my CT scan wasn’t scheduled until 3:25, Nita and I figured we’d see if we could sneak in early and get our appointments done quickly.  Well, they put us in the system and gave me my barium cocktail, but I didn’t get back to the lab until almost 5:30 and didn’t have the scan until 6PM.  The upside was I got a nice nap in, Nita got a lot of work done, and I watched my first episode of Dr. Phil.

Now the funny thing about the barium is it is supposed to clear you out so they get a good picture of your organs without…waste and such.  Since my surgery and pneumonia, I have been taking Vicodin and Dilaudid, both opioid based pain killers. They have a tendency to cause constipation.  Well let me tell you that barium is the great barrier killer.  I can honestly say that the three days’ worth of extra baggage that didn’t want to come out, well it all came out.

After the scan, we went to Nita’s uncle’s restaurant and our hosts joined us.  It was very nice; the food was awesome as always and the stories from Uncle Sammy always entertain.  He has so much history and has done so many things, it is incredible fun to hear of all his old escapades.  His son was also there and joined us for a while.  I actually had enough of an appetite to eat a few shrimp and a piece of eggplant parmesan, which again were phenomenal.

Friday, we reported to Dr. Kee’s office to get our results.  Here is where the decisions come in.  My numbers look good.  White blood cells are elevated because we’re still fighting the pneumonia.  Platelets are in the 200K range, and all the other numbers look fine.  Even the CEA score is staying amazingly lower with no chemotherapy at all, holding at 26 and change.  The question is, am I healthy enough for the study, which starts on Wednesday?  This is big because I want to get started and I have a good feeling about this study.  Plus, there is new growth in my liver and increased size in some lung lesions and some minor inflammation in some lymph nodes, but those could also be due to fighting the pneumonia.

The infamous Dr. Kee

Speaking of decisions, Saturday is the cub scout camp out.  The kids will do archery, shoot BB guns, and have a big campfire.  I really wanted to attend this with Connor and he really wanted me there with him.  We’ve been talking about it for about a month now.  However, the doctors recommended that I rest and certainly shouldn’t be overdoing anything.  So my job is to try to get better before Monday, so I can let the research team know if I’m in for the trial on Wednesday or if we have to push it back to April 10.  The best news is that my place is secure no matter what.  So I won’t lose my spot in the trial. 

This picture was from March 9, you can clearly see the weight change from the Dr. Kee pic

Well, walking up and down the stairs at our host’s townhouse was wearing me out.  Even walking around MDA made me stop and catch my breath a few times.  And as I mentioned before, at Connor’s practice on Friday, I coughed until I almost threw up.  So what do I do about the campout?

Friday night, both my calves cramped up.  This is weird because I’ve been drinking water almost exclusively.  In fact, I haven’t had a drop of alcohol in two weeks.  I also coughed into fits, but managed to get decent sleep.  Saturday morning, against my better judgement, I decided I was going to the campout.  After all, what was I saving myself for right?  Make the memories now, while I still can.  So I stared loading up the SUV with the tent, wagons, chair, sleeping bags, and all the other gear.  I had to rest between almost every trip to the car and house.  There was no way I was going to make it.  Plus, I had a couple of cough to gag fits while packing.

How am I supposed to hump all that gear to the campsite and then go off exploring with Connor when I can’t even load the car? I can barely keep it all together inside a controlled environment, much less outdoors (with allergies).  Then I decided I would drive up separately and help unload and set up the tent.  But two trips up our stairs and back and after wheezing on the second trip, I realized that wasn’t a good idea either.  So, reluctantly and somewhat tearfully, I had to withdraw myself from the trip today. 

I feel like I’m missing something big, but at the same time, at what risk?  I need to get over this pneumonia and I need to get into this study so we can start killing those cancer cells.  And let me tell you, getting over this pneumonia has been harder than some of the roughest chemo.  This stuff is no joke.

In addition to missing, well almost everything, I’ve had several invitations to the Dell match play event.  But in all likelihood, I wouldn’t make it across the water bridge.  And a coughing fit is no place for a golf tournament.  And can you imagine me dry heaving on the side and being escorted out by some security volunteer who might think I drank too much?  So again, my head and my body said don’t go and I have to follow that. 

I wish this would be easier, but I suppose that isn’t what is supposed to happen.  I guess I’m supposed to endure some of these trials and tribulations and overcome them.  I am presented with choices and I have to navigate the need to have versus the nice to have.  I still have faith and hope that things will turn out, but this last stretch has been a pretty tough test.  My appetite is still so low that I’ve lost a bit over 30 pounds now. 

So what do I do? Start the trial on Wednesday?  Or wait a few more weeks until I’m healthier? I’m concerned that I won’t have the stamina and strength to overcome the effects of the chemo in the trial.  And chemo is no joke either, it is hard enough when you are at your best.  So I’m on the fence.  I have until Monday to call the clinical trial nurse and let her know.  I really need some exponential gains over this weekend if that is going to occur.  But maybe I should just gut up and do it anyway.  I don’t know.  So this week, I am going to rest and pray for guidance.  I’ve made a few decisions already, some good, some not so good, but staying on track. 

All word math problems look daunting at the beginning.  But once you break them down into their separate equations and solve the little ones, the big problem solves itself.  So, I’ll just continue to solve the little problems, bit by bit, and hope I’m getting the right answers and staying on the right path.  Then the big problem will hopefully solve itself. Thank you all for your love, help, and support.  God bless you and if you want to pray for me to make the right decisions, I could use the help.  TeamMarco.