Three battlefronts to manage

 

 

As I was chemo-ing this weekend and in between waves of friends coming to visit and help move offices, I thought about what it truly takes to effectively fight cancer.  Now I’m not talking about how to beat it, reduce it, or cure it.  Those things are way out of my control.  I’m talking about how to maintain your sanity, family, and sense of self while living with physically altering and life changing issues.

There may be more and definitely subsets, but I settled on three major battlefronts – emotional, physical, financial.  There is a fourth – spiritual that I think is equally if not more important, but that is for each person to figure out on their own and I’m not going to get preachy, just lead by example and see if anyone gets it.  The first three apply across all cancer fighters.

A picture taken in November that I couldn't repeat today if I had to

Emotional.  This one is maybe the hardest.  There are so many different waves of emotion that course through you each day, and every day is different with different reactions to medications, lab results, family reactions, changing family schedules, and re-ordering the normal to fit the new normal.  It is difficult to continually tell your children you don’t have the energy to take them to a place that you would have gone without blinking just a couple of years ago.  Day trips for BBQ, or for a watermelon or renaissance festival are now measured against heat, access to bathrooms, seating, and how far you have to walk to get to the “action.” 

It is easy to feel like you are letting down the ones you love the most.  You want to keep giving them everything you have always been able to give them, even more if possible, but you cannot physically meet the rigors of the trip so you politely decline and hope your Wonder Woman wife still has enough gas in her tank to maybe take the kids to something fun instead.  This takes a lot of mental and emotional strength to deal with this one internally and it helps if you have either professionals or a really strong network of friends to get you over this hump.  I think feelings of inadequacy and uselessness can easily creep in and those can lead to depression if not kept under check.

I don’t have any sage advice or secret system that works for me.  I use humor, prayer, humor, love, humor, and sports to help me escape and analogize things in my life to things either in the bible or on the field/court/ice/pitch to give me guidance and get over some humps.  We are all different, but for those of you who are reading because you are new to cancer and a friend or nurse turned you onto this blog, I recommend you find your “go to” thing.  Way back in the beginning a Navy SEAL buddy told me the secret to getting through BUDs was to find one thing that you could put in your mind and not let go of that was your absolute rock of stability…then don’t let go.  No matter what happened you had that thing.   Kids, car, home, parents, wife, dog, college football team…whatever.  Hold it, own it, never let it go.  I’ve tried to do that when things seemed at their worst and it has been pretty effective to me.  Or I make a really morbid joke about dying, that seems to lighten up the crowd.

Physical.  This one is obvious.  You start with surgery and have chunks of you removed.  Then there is the prep work, then the chemotherapy.  With the chemotherapy come side effects and general pain.  Most of them can be “controlled” with other medications.  But it doesn’t change the toll it takes on your body.  Chemo is debilitating to your joints and I think your organs too.  Not to mention the aesthetic changes.  As I mentioned, I had a perfect storm of surgery, pneumonia, and cancer growth in my lungs to have my body drop 60 pounds and cannibalize my muscle mass.  Luckily, I have held steady at this weight for almost 4 weeks now.  So I’m guessing this is the new me, at least for now.  I don’t mind the lower weight and wearing clothes I haven’t worn in over a decade, but the lack of strength bugs me. 

I’m over the “I don’t look strong” pity party, now it is just about functional strength.  Like changing out a propane tank from our grill.  Nita had to haul it from the car to the back porch for me.  The empty, I was okay with.  And just recently we hung the picture we had made from our Christmas shoot where I had lifted a child in each arm.  I lifted Josephine up at one of her parent student conference days last week and it really took about all I had to keep her up for a while…and it hurt a little.

I’m wondering if I can lift a little now that my appetite is back and my weight is holding.  Maybe my body isn’t going into lockdown shutdown anymore and the Oxaliplatin is working a bit?  Perhaps it can be treated like any other muscle rehab after a major surgery, accident, or atrophy, I can just work my way back into it?  The problem is not the willingness, it’s the stamina.  And it isn’t normal stamina, it’s the lung capacity issue.  I can lift for a bit, but once my head gets out over my skis on breathing, it takes me a while to get back to what is the new normal state of attempting to keep oxygen flowing in my blood.  I haven’t needed the oxygen tanks as much either.  Things are definitely better than a few weeks back, but not nearly as good as when we went to Maui.

As an aside, and I know I’ve said it before, but what a blessing that trip was.  If we had waited until the summer, there is almost no way I could have survived that trip.  And if it were scheduled anytime in March, April or May?  Forget it!  I would have been damn near confined to quarters and unable to enjoy all the wonderful food we had on the island.  Thank God and great friends for not just the opportunity, but the timing.  Must just be luck, don’tcha think (sarc)?

Financial.  I’m not going to get too deep here, but chemo is expensive.  Hospital stays are expensive, having 7-8 prescriptions that you take daily, get expensive.  Driving back and forth to Houston, Hotels, parking, etc.  All those things add up.  Plus, there is the day to day of normal family life.  Eating, cleaning, clothing, kids’ entertainment, and all the other expenses you are all painfully aware of.  Even with insurance (which is also expensive) these things add up to big numbers quickly.

God has provided for us in more ways than we deserve.  There have been fundraisers, a golf tournament with auction, and even a cookbook.  All of which have enabled our family to keep a sense of “normal” as we trudge through this terrible and debilitating disease.   We are grateful to all who have helped us, and for those who have prayed, brought food, and even just asked if we needed anything.  We are surrounded by wonderful folks and two grandmothers who are Johnny-on-the-spot whenever we need them to help with the kids.

The net effect of this is that currently the family is doing okay in all three elements.  Okay, we’re doing okay financially and I’m hanging on physically.  The kids will be getting some counselling over the summer and perhaps Nita and I will go too.  All three: emotional, physical, and financial; must be in order or at least constantly monitored for the family to function at a high level and battle this disease simultaneously.  There is a lot of work behind the scenes that don’t make headlines (or blogs).

As you may remember, last Wednesday was a long day in Houston and we headed home after the pump was installed returning around midnight.  Last Friday, nurse Nita took removed the pump and de-accessed the port again.  She’s a real pro at it and we no longer have to worry too much about when or what time we finish the chemo anymore.  Nita is more than capable of getting me unhooked.   So that is nice.

This weekend I tried to parlay all my new energy and appetite into a full visit with friends while Nita coordinated with some other friends to come and move our offices.  Nita’s was down and mine was up, but since it takes me an extra 5 minutes just to recover from the stairs in either direction, it made sense.  So there were a ton of folks and kids all weekend.  I loved it, but I was worn out by Sunday afternoon.  In fact, I spent a lot of time Monday, Tuesday and Wednesday getting extra sleep (a lot of extra sleep).  Nita said she remembered her dad napping quite a bit too.  I take those comments with a grain of salt because, yes, he had pancreatic cancer, and yes he died within about a year.  I have three months to go to make it to 2 years.  I don’t want to jinx anything, so we’ll leave it at that.

In spite of my big weekend, during the week I still tried to do more.  I picked up the kids from school and took them in the mornings, went to the grocery store twice, and even cooked dinner one night.  As you can see, I’m really focused on trying to keep things as normal as possible.  Things obviously won’t or can’t be completely back to the way they were, maybe ever, but I’m trying.  I think more than anything I don’t want the children to feel like two years of their lives were stolen from them, and worse that they would deep down blame me for it.  That would suck.  It is tougher still when Nita or the kids ask to do something that is six months or more out and I cannot legitimately promise I’ll even be around that long.  But I’m fighting and I’m trying.  So that is why I push myself a bit at times to do that one extra thing with them and then do some daily debriefings on “what went well today, what didn’t go well?” and other little reminders like that.

The good news is that I’m definitely feeling better during the good times, but with more violent fits happening semi-frequently throughout the day.  In fact, I had one at the grocery store in front of the poor fish monger.  She gave me the wrong weight from what I had requested, but asked if I was doing okay.  I guess I can be quite a distraction.  I thought I was okay and in the midst of one my calm periods…but you really never know when it will strike.  Then, while getting the propane tank exchanged for the grill, I had another coughing fit in the car.  The guy again asked, “You okay mister?”  My reply, “Cancer, buddy, but I’m doing the best I can.”

The funny thing is I have to carry a spit cup with me almost everywhere now.  When I cough, it is usually productive with little bits of lung juice coming up.  That is no fun to swallow, so I bring a spitter just about everywhere I normally go.  I’m sure some people see me cough and then spit into the cup and think I’m just a disgusting dipper.  Well I haven’t purchased a can or bummed a dip in about 2 and ½ decades, but I can see where they are coming from.  I’ll try to be more discrete.

Connor is not happy about being deloused

On the upside, you know what kills lice?  Chemo!  Yessiree Bob.  The whole family got hit except for your resident Deadpool leader.  We received a note from Connor’s teacher stating that someone in Connor’s class had lice. Neither of our children had ever contracted it before, I almost dismissed it.  But for some reason, I just thought back to how many different people we’d interacted with over the past weekend and felt we should do our due diligence.  So I checked his head.  Lo and behold, I found a couple of jumpers.  I then caught one and when it popped between my fingernails, I was sure at that point.

So after school we took them to a joint that specializes in delousing your family. (They were expensive, so no free advertising for them).  Annywhoooo, Connor was fit to be tied and he had the shortest of the treatments.  They did however say that he was probably positive for at least 2 weeks (breeding cycles).  Josephine and Nita were also positive.  Daddy was negative, so be on the lookout for the radioactive superlouse super hero this summer.  The delouserrie (my new word – a place where one goes to get de-loused) proceeded to go hair strand by hair strand with each of them as well.   Poor Nita even asked me to bring her work computer over so she could still get her work done.

Then, there is nothing more fun than reaching out to all the wonderful folks you have spent the last week with either at work or play and informing them that you are an infested pariah and perhaps you have given their family the same gift.  “Hey Rich, thanks for bringing the family over for a visit on Saturday.  It was great seeing you and watching the kids play together!  By the way, check your kids and wife for lice.  Okay, well safe travels home.”  Good times right there. 

At the end of Wednesday, the hard part was mostly over.  Now was the home maintenance portion.  No one, not even Nita liked being brushed out with the fine tooth combs they sent home with us.  You would have thought they were being tortured.  Nita made the comment, “you are so lucky!”  It reminded me of the time my buddy Pete came to sit with me at chemo camp one time.  We were talking about the kid’s teeth and I told him I never had braces.  He replied, “Wow, you get all the genetic breaks man.”  Some of the campers and nurses didn’t know Pete’s humor yet and look over at him like the most insensitive person they’d ever seen.  It was pretty funny.

So this is how we deal with things around here.  Sure lice sucks and cancer sucks worse.  But we’re alive, and we’re together.  We can afford our home, food, insurance, and pay our bills.  The kids can still play baseball and we can watch movies in our man cave.  We have each other.  We have love and a wonderful community in neighbors, AYers, church groups, and we are strong.  Maybe I can’t lift what I once did, but I’m mentally tougher than I have ever been.  It makes the side effects of neuropathy, nausea, joint pain, acid reflux, regular pain, and more nasal mucus tolerable.

So as you get ready for the Memorial Day holiday, I for one will be thankful.  Thankful for all those who gave the ultimate sacrifice for our freedom.  Thankful for my friends and family.  And thankful that God made me a Texan.  There is so much that I learned just being around both city and country folks that have helped shape my views and attitudes. Emotionally, physically, and financially we can make it through the summer.  I am living one day at a time, and planning one quarter at a time.  But it is still something.  TeamMarco.

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.

Is That You Vanity?

On the way to Houston this week, Nita and I had a really good talk about things.  You know we’ve already done the pall bearer list, funeral arrangements and the full monte on that stuff.  This was about how I’m feeling, the risks with this chemo, and summer planning…which really kind of launched the whole thing. Having a cousin in the funeral business also makes things a lot easier.  Much of what needs to be done is already planned and can be solved by an expert if it wasn’t.

I did not get the chemo today.  I messed up.  Prior to my infusion, I was supposed to take four doses of Prednisone, one every six hours, the day before leading up to just a few hours before the infusion.  I failed and forgot to take one dose while we were driving to Houston.  I realized I had missed my 6pm dose around 10:30 and wasn’t sure about taking it then and then another at midnight to “catch up.”  Well I’m glad I didn’t because Dr. Kee cancelled the chemo today.  When I told him first thing about my omission, he promptly said, “let me go talk to my pharmacist, but I don’t think we can proceed today.”  He then reminded us about the severity of not taking this drug correctly or out of order…more than once.

I’ve alluded to these things in previous blogs, but here is the straight dope.  Oxaliplatin can help me and it can kill me.  The reason the doctors are being so cautious about where I do the infusion and steps leading up to and during is for exactly those reasons.  If for any reason I have another reaction that they cannot knock out quickly and further dilute the Ox and continue, then it is over.  By that I mean, if they have to stop the treatment midstream they can never go back to it again, it is gone, poof, it can never be revisited.  We are then left with very few options.

Why would they stop the treatment?  In addition to a mildly annoying rash which can easily be fixed with hydrocortisone and Benadryl, it can cause breathing issues.  And we all know how I need more of those right?  Well, as Nita and I were talking about the risks, end of life wishes (hospice, etc.), and medical power of attorney type stuff, we broached the “what if the Ox takes me out and puts me on a respirator” conversation.  I told her that if there was no way out, to keep me hooked up long enough to drive the kids and my mom down to say goodbye, then pull it.  I’m not judging for anyone else, but I’m barely useful now, much less laying in a bed unconscious and unable to breath for myself.  So there’s that.

So, the good news is I’m still here, and chemo has been rescheduled for Wednesday.  Then we’ll push another few days because there is a surprise trip for the kids we have planned for the day school lets out.  Shhhhh, don’t tell them, they have no idea.

I think I have/had another lesson to learn during this test I am currently experiencing.  Vanity.  I know it sounds weird since I don’t really care that much about fashion, gained too much weight, and I didn’t freak out when my hair was thinning and we had to shave my head.  But oddly enough my muscle mass has really been bothering me, to tell the honest truth.  I didn’t think it would, but then again, I didn’t anticipate it going like that either. 

Josie and her game ball and my small arms

A couple of years ago, arms aren't huge, but certainly bigger

If you’ve been following for over a year you have heard stories about my sports, life in the country, and other little things that have led me to be a stronger than average type guy.  I wouldn’t classify myself as a meathead or a gym rat by any means, but I was a pretty strong dude – kind of country strong.  I had big arms and legs (from wrestling and catching baseball) and they served me well throughout the years. 

When Nita and I traveled, I could pretty easily hump all our gear wherever we were, elevators or not.  On our honeymoon in Italy we stopped in Sienna for a few days.  We stayed at this lovely B&B called the Antica Torre (antique tower) and since it was our honeymoon they put us on the fifth floor with a view of the Duomo.  However, there was no elevator.  I had no problem dragging our luggage up the five flights, but our poor hostess, who insisted on helping with the luggage, wanted to take a break at each landing.  It was funny at the time.  Now I probably couldn’t make it to the top floor carrying a pillow.

That being said, I have had a hard time watching my body transform to, well I guess the best description is wasting away.  I have loose skin and stretch marks where muscles used to be.  I had to buy some new shorts because I have no ass anymore.  My old shorts won’t stay up.  My calves which used to be huge look like a freshman cornerback who runs a 4.4 (for you non-sports people, defensive backs usually have tiny skinny calves).  I suppose this is another of the lessons I needed to learn.  I wondered why some of the women at chemo camp had such a hard time with the hair loss, but I wonder no more.  I guess we each had our own thing that we valued as a good part of our bodies and when it leaves it can be traumatic.

My buddy and meathead Pete came by the other day and acknowledged the loss of mass.  He said, “Dude, your face is skinny and handsome, but good Lord your arms and legs are spaghetti.”  He also said that he was talking to some new team members at work and mentioned he was coming by to see me.  He mentioned my name and they said, “The Marco Martinez who writes the blog?”  He affirmed and they were amazed by the coincidence.  So it’s not quite a Kevin Bacon type of six degrees, but maybe two or three.  It is crazy how many people are reading and following the story.  Thank you all and God bless you.

I receive quite a few notes from folks cheering me on or telling me that my blog has helped them in some way.  That not only makes my struggle easier to continue, but it is quite flattering.  One of the more amazing notes I got was from one of my Aggie Yell brothers.  In his own words, “Whenever the time comes, and my hope is that it is far far off, I will make the trip to Texas A&M on April 21st and say "here" for you. I have a strong feeling that many other voices will ring out together.”

A&M has a tradition called Muster.  It honors the dead former students, and friends and family in attendance say, “here” when their name is called during the roll call for the absent.  While we were at Nita’s uncle’s restaurant Thursday night, he was talking about a friend of his who was just inducted into the A&M hall of honor.  He mentioned the white corps uniforms and it reminded me of the note my Ag brother sent me.  I started tearing up and couldn’t stop.  I finally got a hold of myself and told Nita the story, which of course made her start crying.  We then drove to Beer Donkey and Kat’s house for the night.  They again generously put us up the night before my appointments in Houston.

This past weekend we all were privileged to witness Connor getting his first communion.  He did wonderfully and was very patient during the mass.  His Godparents and grandparents came to watch him and he was all smiles during and afterwards.  He now has three steps into Catholic Church and is doing well, although he’s quite relieved that he doesn’t have to attend RE (religious education) classes for a while.

Connor after his first Communion

This weekend Josie had another baseball game.  She actually received another game ball.  She was so proud and is really falling in love with the game.  She is becoming the kid I was.  You know the kid who puts on the uniform a little earlier than necessary, wants to wear the jersey a lot, and generally loves being on the field.  She even complained that practice wasn’t long enough.  My girl!  She also lost two teeth Thursday, one I got to see before we left, the other came out while she was brushing before bed.  She’s growing up!

So how am I feeling?  Here is the thing.  I don’t want to get anyone ginned up or artificially excited, but I feel better.  I think either the Oxaliplatin is working (yes even after one dose), or the pneumonia has finally purged.  My coughing fits are fewer and farther between.  My shortness of breath seems to come back sooner (shorter duration for recovery).  My appetite is mostly back and my weight freefall looks like it has leveled off and is holding steady at 60 pounds over the last two weeks.  I am actually looking forward to another dose of the Ox, but of course we have to do it right and not risk doing more harm than good.

I am hopeful, I am optimistic, I am confident.  I’m not sure if we’re turning the corner here or if this is one last hurrah that God is allowing me to experience with the kids over summer.  Either way, I am living for now and my family.  My friends threw a surprise birthday party for me last Saturday and it was pretty awesome.  In fact, I was singing happy birthday looking around for who the poor sap was until I discovered it was me.  Mercifully there were only four candles and I was able to expunge them with a single breath.  It was a great and fun night.

So we keep moving forward and continue the fight.  Of course it isn’t easy, but what in life worth having is?  And for the record, what is more a part of life than actually being alive?  That is what I am fighting for and my lovely wife actually thanks me frequently for fighting so hard to stay above ground.  As we were having our talks yesterday, from medical power to the Aggie Muster, she asked me, “Honey, is there anything you want to do?  Anything at all?  Let’s make it happen.”  It was straight from Caddy for Life the Bruce Edwards story (Tom Watson’s caddy – I blogged about it a year ago).  And I answered the same way (mostly).  I said, “Honey, I’ve done it.  I have the beautiful family I dreamed about.  I have the best friends in the world.  I have everything I need, and many things I don’t.  I’ve seen a lot and done a lot.  There is nothing more I need to see, do, or experience.  I just want a little more time with y’all.”

The book will become a reality.  A friend has put up the money for a publishing house called book in a box.  I am currently working with them and we should have a product in both paper back and available for e-book download within a couple of months.  It is fun and exciting.  For those who hoped that the second-year blogs would be part of it, unfortunately there isn’t enough time to condense, rewrite for a book read rather than a blog read, and compile.  Plus, it is fluid in that there is new material each week.  So, maybe Nita will put whatever is left over and have a second book created if the first one does any good.  In any case, I’m pretty excited and I feel useful again having a goal locked in.

Thanks to each and every one of you who take the time to read.  I’m sure you are busy with your own lives and even though it is about a five-minute read, it still takes away from something else you could be doing.  It saves me a lot of time re-explaining what is going on and honestly it is therapeutic for me as well.  The few hours it takes me to write, edit, and post are more than worth it.  So thank you.  I can’t help but think good things right now.  I know it sounds crazy especially in light of the fact that Nita and I had such a morbid talk on the way to Houston and we left without any chemotherapy; but I feel better.  I feel alive, and I think acknowledging my vanity is a good step toward letting it go. 

Plus no Ox means no cold sensitivity and I’m drinking a bourbon right now! ;)  So grab your drink of choice, enjoy your weekend, love your family, and do something amazing.  And that something can be anything that makes you or your loved ones happy.  Happy Mother’s Day to all you moms out there. Thanks for putting up with all the abuse, changing the diapers, feeding us, keeping our laundry done, and the thousands of thankless tasks that go unrecognized 364 days a year.  May you all have a wonderful and safe weekend.  Thanks for giving me another five minutes in your lives. TeamMarco.

Gunfighters and Trail Rides

Gunfighters and Trail Rides

The other day I was opining to Josephine how families were a little closer back in the day than they are today.  One of the reasons I cited was a pure lack of in-home distractions.  I even told her about the barbaric practice of families only having one television set…with no remote control.  There were no ipads, computers, smart phones, or any other device which would allow you to still be in the house/room, but yet miles away from the nearest conversation.  And if you wanted to watch a show, you’d better hope your parents either didn’t want to watch something different, or didn’t feel like watching TV.  And video, I remember when my dad bought our first top load VCR.  I must have been around 12 or 13 and it was life changing. Doesn’t that even sound crazy now?  Didn’t want to watch TV?  Josie was floored by the very thought of such a situation.

Back then I remember my dad loving westerns, playing the guitar, and having an affinity for Marty Robbins records. I could probably still sing along to Big Iron and El Paso.  I even remember the album, Gunfighter Ballads and Trail Songs.  These songs burned a big swath in my memory and are probably the reason I love all the Clint Eastwood spaghetti westerns, and possibly why Connor wants to go shoot the paint ball sniper rifle after school every day.

Every day after school, Connor wants to shoot the sniper rifle (paint ball)

When Nita and I first got married we talked a lot about how we wanted our family dynamic to play out.  It was more than basic logistics, but it included a very specific provision that we not eat in front of the TV.  We would eat at the table and have family discussions.  On rare weekend occasions, we’ll all retire to the man cave and do dinner and a movie for “fun family movie night.”

The dinner table conversations have given us some really great moments over the years.  From the kids singing songs in their high chairs to fart etiquette during dinner.  Rarely has there been a dull moment.  When I first got cancer and especially on weeks with my pump, it was impossible to avoid talking about.  So of course, the conversations led to deep Q&A discussions about everything cancer.  It was helpful in both the short and long runs for us.  The kids are informed, understand the terminology, and are very understanding of the reactions of others around us.

This week the dinner table gave us a doosey.  Now in my defense who among us doesn’t think Chris Farley movies are family friendly? I certainly thought so.  Anyway, Connor and I were going back and forth between a baseball game and Black Sheep one evening.  There was a scene where David Spade was reaching in his pocket and telling people he had something for them.  He would then pull out his middle finger and give them the bird.  I must have chuckled because Connor did it to Nita the next night at dinner.  “Hey mom, I’ve got something for you. Here you go.” 

We were both mortified, Oh my gosh, where did he learn this?  Connor got so upset he started to put himself in time out.  As he was walking, almost between sobs, he said, “I’ll never watch Black Sheep again!”  Oops.  My fault.  I fessed up and we hugged Connor to settle him down.  He is such a sweet kid he had no idea what he was actually doing.  Explaining it to Josie was another fun adventure and of course she wanted to try it one time.  No ma’am, that is not for polite little girls.   The fun never stops.

Last Friday I started another round of FulFox chemotherapy.  It was the Oxaliplatin that we all love and remember.  This time they gave me four diluted bags of Ox instead of one full dose.  About three quarters of the way through the third bag I started getting a slight rash.  Nita didn’t want to see it, but it was there and I did the scratch test too (all my med people out there know what I’m talking about).  So they stopped the infusion and pumped some Benadryl and another steroid.  After a bit, we started up again and luckily it was uneventful.  We got the pump and headed home.

Nita pulled into our driveway just after 11:30pm and we were glad we drove home to our bed instead of having to wake up at 6 and blaze home for the three baseball games on Saturday and one on Sunday for good measure.  Connor and Josie’s baseball games were a hoot (Connor even found a turtle in the creek).  The most touching thing was when Josephine saw me in the stands.  Last year I tried not to sit around everyone when my pump was in.  I thought it might freak out the kids or the parents, so I just didn’t.  This year, man I’m doing everything I am able to do.  I don’t care who thinks what.

But Josephine remembered the policy from last year.  So when she saw me, her face lit up and she came up to the fence.  She said, “Dad, do you still have your pump in?”  I said that I did.  “But you never come to games with your pump.”  I told her that this time I did because I loved her.  She beamed so brightly I thought she was going to leave the ground.  About half way through her game, Connor’s game started.  I walked over to his field to watch most of his game.

Josephine with the game ball

I came back just at the end of Josie’s double header.  She came running up to me after and said that she had been given the game ball.  She said, “Dad, I knew when I saw you with your pump, but still came to see me that I was going to do my very best.  Since I know you aren’t feeling good, but you did it for me, I was going to do my best for you.  I even told a teammate that I was going to get the ball today.”  My girl!

Sunday night a nurse friend from the neighborhood came by to observe Nita taking the pump off and flushing and de-accessing the port.  Nita was awesome, which is good because next week we have to do it again with an all-day thing at MDA on Friday and a port/pump removal on Sunday.

The side effects were manageable this week.  The nausea was usually preceded by a big coughing fit and then a small retching fit.  Like I’ve said before it sucks to watch and it sucks to be the one doing it for sure, but after a few minutes it subsides.  If I had to live like this to the end but got a few more years to watch the kids grow, I’d take the deal.

Sleeping has gotten a little bit easier.  I can now lay flat, but only on one side.  That has led to an out of balance back, but I went to my chiropractor on Thursday morning and he helped adjust things back to square.

Eating has improved.  More things actually taste good or better than before.  Plus, the cold sensitivity has not fully kicked in yet.  So I was able to get some milkshakes (high calorie) and even eat a pudding or two.  The net result is I finally stopped the weight freefall at just under 60 pounds and even gained back a pound this week.

Josie gave a class presentation on Thursday which of course Nita and I attended (she nailed it)

Everyone has been very positive this week.  I think the kids are hoping for a miracle as many of us are.  Connor is getting his first Communion this weekend and we’re all looking forward to that.  I had my best friends over on Thursday night to hang out and watch a movie.  Since I don’t get out much for some obvious reasons, I figured we could still get together and they wouldn’t care about my coughing and spitting into a cup, they never have before.

It was nice, but very much like a theater.  Not a lot of talking, but we were all together.  It was nice and I hope we do it more frequently.  There is nothing like being around great friends when you are not at your best.  I think the difference is that you don’t actually have to say anything.  Over the 20-40 years of friendship with these guys I think we’ve said everything.  So we could just hug, laugh, smile, or gesture and everyone got it.  I wish I had more energy and could maybe talk for longer durations, but it is what it is.

So how am I feeling about everything?  Well, that is a great question.  Here is the honest answer.  I want this to work for as long as it can, perhaps even have the miracle effect.  I also feel parts of my body changing.  My lung capacity is for shit.  I seriously struggle to just go up a flight of stairs.  Okay, so the stairs portion is nothing, it is the catching of the breath after the feat.  Coughing fits produce the same labored breathing. And my muscle mass is depleting beyond recognition.  Without a shirt, I look like Kevin McHale (like someone left the clothes hanger in my shirt).  My traps are gone and my arms are small. 

I also cannot lounge in as many positions as I once could, it induces a coughing fit.  So I have to be at one of three or four basic angles.  Transitioning from one to another sometimes induces a coughing fit.  Connor, bless his heart, still freaks out a little when one of these initiate.  He constantly asks if I’m okay or I need an inhaler, or anything he can do.  My boy.

That is the trouble with this new thing.  Chemo days make you want to just lie down, cover up, and binge watch something.  But with the added lung issues, I can sit on the couch and binge watch, but I have to move around and stand up to avoid my lungs from compressing for long periods of time.  Doesn’t sound like much, but when you are sick and just want to lie down, it is a bigger deal than it sounds.

Sticking with the original question I feel a little like a gunfighter.  Like I’m pretty good, a fast shot, a good aim, with good reflexes; but there are all these other gunfighters always wanting to challenge me.  Every day there is another challenge to be met.  Don’t get me wrong, I’m not afraid to strap up and go to work; but in the back of your mind you wonder if today is the day they get the better of you. 

That is how I feel. I am hopeful, optimistic, and loving the kids and Nita so much right now.  But I feel the drugs and cancer taxing my body and wonder which will last longest.  But these decisions are above my pay grade, aren’t they?  Only a select few truly know how this will play out and I don’t think any of them are human. 

So we trudge along and are thankful for each new day.  Each time I get to run my fingers through the kid’s hair and tell them I love them during a big hug.  Getting to enjoy smelling their little funky smells when they’ve been playing outside hard and they come inside all sweaty. And basically just trying to make this seem as normal as possible.  I am confident the kids are going to remember many of the lessons, but now is time for really living in the moment.  The enjoyment of being together, sitting around the dinner table, no television, just talking.  Being present, laughing, telling jokes, sharing ideas and events of the day, like we used to do, back when we all had one TV and no remote.  TeamMarco.