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.