Watching the numbers

Watching the numbers

Now that I have finally figured out how to take my medicine on time, I am back on the chemotherapy train.  We headed down to Houston Tuesday night, in order to start the infusion first thing Wednesday morning.  Tuesday night Nita and shared a lot about our lives, early marriage, and kids with our host.  During the conversation, an interesting correlation came up: reunions and numbers.

Middle of the fourth bag of Oxaliplatin, watching a movie in the hospital room

The interesting coincidence happened to revolve around my class reunion.  I was a class of 1987 guy and in a few weeks, will be headed to our 30 year.  Ten years ago, a few weeks before we attended the 20 year, Nita had just gotten pregnant with our first child.  We had been trying to start a family for a couple of years so it was very exciting and nerve-racking for us.  During that time, we were obsessing over her HCG scores.  The first five weeks had gone well with a steady incline of her scores (that is good, you want high steady even exponential growth in this trend line).  The day before the reunion our nurse called and there was a dip in the numbers. 

She tried to console Nita and assure her that one data point alone didn’t mean anything, but Nita knew deep inside that something was wrong.  We still tried to stay positive and believe that it was a minor glitch and would all be fine with the next blood test.  A lot of my old high school girl friends were very sweet and extremely empathetic with Nita.  They were very positive and supportive, yet many of them already had “angel babies.”  They already knew what I suppose we knew but weren’t ready to accept just yet.

We muddled through the event, had fun, and enjoyed the potential of starting our family; but as you have already surmised by now, our baby did not make it.  The numbers continued to slide over the course of the next few weeks.  It forced us to make some decisions and together we formulated a new strategy. 

A funny aside in the discussion Tuesday night involved a six-sigma guy who came to our host’s workplace trying to find and create efficiencies. I am also a six-sigma certified guy and I suppose I look through the lens of the critical and most efficient paths too often…which drives Nita nuts a good portion of the time.

So obviously, I tried to apply my efficiency training to our family planning.  I even created a power point complete with spreadsheets for ages of children, school efficiencies (drop offs and pick-ups), car purchasing, graduation, college, and our retirement.  I know!  Perhaps it may have been a tiny bit over the top.  Nita sat patiently through my presentation with a modicum of “you are such an idiot, why aren’t you wearing a helmet?” written on her face.  In the end, we agreed to use the fertility clinic’s advice and take the clomid.  It worked so nice, we tried it twice.  The results are the lovely and talented Connor and Josephine, and we couldn’t be happier.

Fast forward a decade and here we are, less than a month until the 30-year reunion and we again find ourselves watching a different set of numbers hoping for a different trend line.  My CEA score has been discussed a lot.  For the new readers, it is an indicator of cancerous activity.  Three and below is normal, up to six if you are a smoker.  My number the week before the first dose of FulFox was 57.1, which was quite a spike from the earlier 27 a few weeks before.  It actually wasn’t overly surprising since we hadn’t had any form of maintenance chemo or any growth inhibitor in well over three months.  The week after the first dose of Oxaliplatin, the CEA was up a skoach to 60.1.  Going up three points would be a big deal if I was in the 3-6 range.  But at 57, it’s only 5%.  Up is not good, but slightly up on the first one isn’t bad and one data point does not a trend make (intentional – sounds fancier).

I bet most of you thought there wasn’t going to be math on this test.  In any case, I’m still very optimistic.  So far, the chemo is going well with the new LONGER procedure, and I am looking and feeling better. I say that with all due respect to last week’s entry.  I have been told by several folks at the kids’ games and at the store that my color looks better, and I look less, well, dragged behind a truck than before.  As for the feeling, I have more energy and as previously mentioned, the recovery times for simple tasks take far less time.  I can actually take the trash to the curb, check the mail, and walk back into the house without having to put my hands on my head like an Olympic miler after a race.  I still have coughing fits and chunks of mucus still come up from the lung region, but with much less frequency.

So even though the chemo sucks (technically it always has), I can literally feel it working.  Either that or all your prayers have gotten God’s attention and the lung mets (colon cancer that has metastasized into my lungs) have backed off a bit to allow a bit more air flow. Also, the cold sensitivity hasn’t kicked in yet so I have been able to enjoy ice cold water and an adult beverage on occasion.  My appetite has come back and I have been able to enjoy wider array of foods lately.  Finally, the weight loss has held steady and I found a few secrets to get some cheap calories.  For example, did you know that the margarita has the highest calorie count of mainstream beverages?

Friday update – I jumped the gun on the cold and neuropathy.  Thursday afternoon the cold sensitivity kicked in as I was sipping an ice water during Josephine’s last playoff game.  It was a nice little shock to the system, but tolerable.  The neuropathy is still light, mostly fingertips, toes, and balls of my feet.  Minor nausea also crept up.  Nothing that couldn’t be controlled with meds.

So here we are, pumping the poison hoping for these physical results to manifest into solid numerical data as well.  The second and possibly third treatment will give us the trend line and let us know where we are.  The reality is, it has to work.  If the CEA score gets over 100, we enter the point of not much hope for return.  Also, if the FulFox doesn’t work, there are only really risky options.  Before you say, “what have you got to lose?” there is a lot potentially.  With my reduced lung capacity, the alternative options could accelerate the inevitable. 

I am not afraid of dying but I certainly don’t want to rush the process.  Unfortunately, with or without my game face, there are those coughing/retching fits that are impossible to hide.  The children are hopeful and even somewhat optimistic, but they know that daddy may not make it.  They talk about it quite a bit.  It is hard to manage sometimes, and impossible to refute, but we try to stay as positive as possible without setting unrealistic expectations.  You see, I have always had a mantra with them since the beginning.  “Daddy always keeps his promises.”  And with them, I have.  I keep my commitments and encourage; no I demand that they keep theirs.  For that reason, whenever they ask if I am getting better or if I’m going to live I usually tell them that I am fighting as hard as I can and doing my best.

Both understand that failure is part of life and we can’t always control the outcome…but we are 100% in control of our effort.  So as long as they give me their best, win or lose, we are good.  I also give them what I request of them, my very best.  Which is why I gladly smile when the needle is going in and the chemo turns my stomach.  I can take it, because the potential outcome is worth it.  More time with my family. 

With my newfound energy, I’m enjoying a few more things.  I’ve been going to the grocery store (which I prefer to the instacart service) and have been doing more stuff with the kids.  Josephine wants to play tee ball all-stars, so we submitted her name for the coaches’ vote. Connor is just ready for school to be out so he can overdose on his ipad.  All in all, I’m not sure how long this gift will last, but I’m enjoying it now.

Connor and his best friend find a turtle in the creek by the baseball fields

Our dear friend Dr. Edson took Connor to his baseball game on Wednesday night.  I was so bummed that I had to miss it, but it was nice that he had a cheering section (he called it his fan club) and the good doctor was nice enough to clip a go-pro to the fence so I could watch the game at home.  After the game, they called and told us how well Connor had done.  They even went for popsicles afterwards.  Finally, Connor just short of begged me to sign him up for baseball again next year.  I love it, the kids are asking ME if they can play more!  My heart is full.

But for now, we wait and watch the numbers.  I certainly hope I’ll have better news to report at the reunion than we did last time.  Either way, it has been quite a ride.  I received a call from one of my favorite business mentors this week.  We had a really nice talk about life, the blog, the book, and family.  More importantly it was nice that we have kept in touch even when our business connection was severed due to us each taking on new work opportunities.  He shared his opinion on what the impact the blog has had on so many folks and the effect it has had on his own life.  It certainly helped validate my willingness and enthusiasm about sharing my journey and hopefully doing God’s work. 

One funny thing that came up was the finances of our situation.  You see, when I go, Nita and the kids will be fine and set for a while.  But what happens if this all works and I go into remission?  I haven’t quite budgeted for a successful mission.  Things could get tight, but then again, if I go into remission, I can go back into the workforce.  All solvable and good problems to have I suppose.  But it was a funny conversation – “what if I live? Can we afford it?”

One other thing is for sure, I certainly married the right woman.  Nita has been wonderful throughout, displaying courage and strength.  Sure we’ve had our moments of weakness, we are human after all, but in the grand scheme, the ship is not listing and we’re steaming in a good direction.  In fact, I think our choice to be together was confirmed this week.  7 hours in a car over two days, and 13 hours in a private hospital room without any arguments, hurt feelings, or even a squabble.  We just enjoyed our company together and as soon as her work day was over we even snuggled in my hospital bed and watched a movie on the iPad.  And to be honest it was fun.  We laughed, told jokes, and teased our nurses all day (who were fantastic by the way).  I know it sounds weird saying you had a great day in chemotherapy, but we did.  It looks like we both chose wisely.

None of us know how it will end, but we can always control our effort.  So I choose to give it everything I have, to live, to love, and to continue learning.  I choose to work with my wife to raise the best children we can within our abilities and skillsets.  I choose to stay positive, full of hope, joy, and optimism.  I choose to set an example when I can in ways that I can.  I am trying not to be as judgmental as before and to understand/empathize with others.   My inability to walk long distances without having to catch my breath has certainly helped me understand that we can’t always tell what is inside by looking at the packaging.  By that I mean, sometimes people look healthy, act healthy, but we have no idea what they are going through or what they might be struggling to deal with.

Thursday morning Connor had a student led conference for his annual review

We’ve all been guilty of watching someone park in a handicapped space and wonder why that tool was taking a space away from someone “who really needs it.”  I know I have.  Now I know (boy do I know), that you don’t have to be in a blow chair to need closer parking. 

So this week, we enjoyed being together during the chemo and driving back and forth. Unfortunately the cost was missing Connor’s playoff game Wednesday night.  The upside is that I am generally feeling less shitty than normal, or maybe it is just less shitty than having pneumonia and no lung capacity.   This is still uncomfortable and unpleasant; but I am willing to do whatever it takes.  It isn’t easy, but nothing worth having is, is it?  God bless, keep those prayers coming, and may you all only ever experience cancer through my blog.  TeamMarco.