Thursday, January 7, 2016

You're going to put what? Where?


You’re going to put what, where?

This New Year’s Eve party would not be like the previous ones.  Due to my lowered white blood cell (WBC) count, we decided to host a small get together.  The goal was to ring in the New Year around 9PM.  Well, the bowl games were exciting, the kids were having a blast with the poppers and sparklers, and we went ahead and partied on until 11PM to ring in the East coast ball drop.  Champagne and hugs all around!  That night I spiked a fever.  I guess all the party prep, shopping, cleaning, etc. just did me in.  I slept for 12 hours that night/morning.  The next day I was a zombie. I couldn’t get warm enough.  I tried to hydrate as much as possible, but everything ached.  I was hoping it was just a mild little bug that would run its course in a day or so.  January 1 was not my best but truth be known probably not the worst I’ve felt, for different reasons.  That morning the WBC boost shot I had really started kicking in…I’m guessing because of the WBCs needed to combat whatever was going on…so my hips and legs started to really scream at me.  That wasn’t fun.  I basically got on the couch under a quilt and watched football most of the day, pretty easy to do on New Year’s Day anyway.  I slept for another 11 hours that night. 

The following day was still a good football day and I was still feeling chilled, dehydrated, and had a slight fever.  At no time did I feel the need to contact any medical authorities.  My body was still containing everything and I was using my meds in a decent balance.  The redeeming thing about January 2, was the kids wanted to do playdates with friends and it was too cold to play outside with the outside toys so there wasn’t a need for me to really do much.  They did their things with their friends, and I of course bundled under a quilt to watch football.  We had a family movie night and put the kids down just in time to watch TCU’s monster comeback against Oregon.  Wow.  Why Sports?  Because of this!

Each of those three nights I sweat through my t-shirts and had to question if I was taking enough Imodium. My mother grew up in a generation that anytime you felt bad the answer was, “take a laxative, you need to get that all out.”  I think it was one generation removed from leaches and bleeding.  So part of me was wondering did I need to get “it” all out or was this still just the chemo doing its chemo-ey thing.  As of January 3 the headaches were still persistent and I have to be careful with my pain meds.  Hydrocodone has Tylenol which is bad for your liver.  And I need my liver to process and filter out all the junk/chemo, etc. not to mention I have cancer in my liver.  And I can’t drink much for the same reason.  So no “grandma’s hot toddy” recipe to sooth my throat and head.  Just have to gut through it and hydrate.

Monday will be better because I’ll go into the office for a bit and then head to the oncology center for some fluids.  Brand new year, so I should be met with a nice chunky deductible payment and copays.  And so it starts again.  However, because of the amazing support of our friends and family in different funding campaigns it is far less daunting than it was just one month ago.  Thank you all for that.  We’re now able to fully pay off the 2015 obligations and have a great head start on 2016.

Back to Sunday, what do you do when you feel like you’ve been dragged behind a car for three days?  Why take the family ice skating of course!  Am I a good skater?  No I am not.  In fact it was the very first experience for the kids.  Connor was not a fan, Josie decided she is the best skater in the family (and she is) and according to her, will “probably win a medal playing hockey.”  And after three laps around the rink…she might be right. First lap, she fell every two steps.  By the third lap she was already doing spins.  Oh to be five and confident, okay, to be five.

 

I firmly believe that my lifetime of team and individual sports has helped developed my ability to cope and manage this situation.  I also believe that wrestling may have played an even larger role in a lot of the good things that have happened in my life.  Well Tuesday night Connor attended a wrestling tryout for a yearlong school. The most important part was he loved it.  He said he REALLY enjoyed it and wants to go full force into it.  I let him answer all the Master’s questions (tied to a martial arts dojo – has Brazilian Jiu Jitsu as well) and both hit it off.  The Master runs a tight ship as well, very intense, high discipline, but fun. I have not pushed Connor in any sport so I wouldn’t be “that” parent.  I’m really excited that this has just happened and that he is embracing it so well.  Proud doesn’t begin to describe it.

One of the very sweet things that people do is send any and every homeopathic remedy.  There are a lot!  There are sweat shops, starvation camps, ketone supplements, wasp venom, sugar/glucose purges, oxygen treatments, infrared saunas, soups, juicing, and of course medical THC.  I’ve even been invited to a FB page called “Don’t buy green bananas.”  Luckily the Western approach is currently working and it isn’t completely destroying my body (as far as we can tell).  I take the recommendations seriously though because as one friend with cancer recently flat out stated, “Well it’s either take the chemo or die right (welcome to the pragmatism on the inside)?”  And she’s right.  You can’t just wish it away.  If I don’t go through all this, my cancer will grow and overtake my organs until they shut down which will lead to any number of bad things including septic shock, cardiac arrest, etc.  However, the most recent recommendation is, well different…which again I take seriously as an option…anything is better than rolling over to die right?

So not everyone’s body responds to every protocol the same.  And no oncologist is going to recommend a month long starvation camp in Central America in lieu of chemo and expect to keep his/her license.  As we were discussing the new option, I did alert my friend that I could not resist mentioning it in the blog…it is absolute comedy gold.  The new one involves wheatgrass and enemas.  A lot of them.  Remember how excited I was about the barium enema during my first CT Scan at MD Anderson? Guess how excited I was when I heard I could potentially stop taking chemo if I only changed my diet to all raw vegetables…and juice up some grass and put it in my butt…frequently…for the absorption rate.  Hey there neighbor, could you do me a favor?  While you’re bagging up your yard clippings, may I have them?  I’m making a nice St. Augustine and Zoysia cocktail for my own afternoon southern irrigation.  It reminded me of a joke my nurse told me when my jaw was broken 25 years ago.

               A guy was in a car accident and had broken almost every bone in his body.  He was in a full body cast and his jaw was wired shut.  His nurse came to his side and said, “I feel so bad for you, is there anything I can do?”  He replies, (when you read this in your head, hear his voice with clenched teeth) “I really miss a good cup of coffee, could you get that for me?”  She replied, “I’m sorry, but we can’t risk you aspirating (throwing up) while your jaw is wired, but we could give it to you as an enema.”  The guy says to go for it.  So the nurse starts to administer the coffee and he starts convulsing.  She asks, “Oh my, is it too hot?”  He says, “NO it’s too sweet!”

So this new option spurred a 20 minute discussion with my wife about changing diets, trying anything, and that she would in fact be willing to administer whatever might be needed, ahem, to be done.  That’s quite a girl I got there.  For better or worse does not come with a checklist does it?  You just accept what comes down the line even if it involves putting liquefied veggies and grass in your butt.  Good thing chemo makes you sterile or things could get out of hand.

Speaking of hands, my hands are getting cracked and dry.  No amount of lotion seems to help. I wondered why they had little tubes of Aquaphor in baskets at chemo camp.  Now I know.  And the nose bleeds are constant.  I guess the air, allergies (immune system is lower), and constant nose blowing is just irritating my nasal membranes.  Two more things to add to the list.

But back to reality, if that’s what it takes? Then that’s what it takes.  Isn’t it funny that changing your diet or lifestyle seems completely out of the question and too inconvenient?  Until you get a terminal disease and then, among other things grass in your butt seems reasonable?  There is no option too outlandish once you get desperate.  I am blessed and lucky.  Even though I have a late stage metastatic cancer my body is responding to the first protocol.  If my cancer mutates or stops responding, I still have Western options, but I will try anything to buy another year with my family.  So there it is. I jest, but appreciate the time each of my friends and support group put into sending me links, books, and other ideas…not matter how outlandish.  They are sending them because it must have worked for someone somewhere and they care enough to share it with me.  So thank you.  As another aside, a USMC buddy of mine sent me a link to a wasp venom that kills cancer cells without killing normal cells.  I hate flying stinging insects (more than most people) as some of you know.  I mentioned that with my luck the only way to get the full effect was probably to sit in a room and let them sting you.  He replied, “Brother, if that is the only way…I will sit in the room with you.” 
 

 
 
 
 
At the end of the day, just stay alive or like Dori from Finding Nemo says, “Just keep swimming.”  There may be a cure out there someday, and someone has to win the lottery right?  Injecting poison, taking anti-nausea/diarrhea all day, cracked hands, bloody noses, neuropathy, hair loss, fatigue, loss of appetite, inability to eat spicy food, radical diet change, less sugar, no booze (once a week), no caffeine, etc.  What would you do or give up for one more day with your kids?  Anything! So I guess the price isn’t too steep after all, is it?  God bless.  TeamMarco@austin.rr.com

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