2015 Ends with a Bang!

2015 ends with a bang.

Even though this is my new reality, sometimes I lay in bed and wonder if this is really happening.  This week marks my seventh treatment.  I don’t think you can do more than 12 straight, they have to let your body recover.  How my markers and scans go in March will determine what the new maintenance drugs will be or if that will be the extent of it.  I am wondering what the last three quarters will hold for me.  Maintenance? Another surgery? Radiation?  And then do I start all over again in October?  While I’m thinking these thoughts, I hear the pump break the night silence and know that is not a dream.  I do not like infusion week.  The nausea is getting worse, but the heart breaker is the concern on my children’s faces.  I don’t like having to be more careful around them, watching for tubes and giving one sided hugs so they don’t jostle the needle in my chest. I can deal with the pains, but that last part sucks.  As many of you know I’m a very affectionate person – some would call me a hugger.  Now 20% of my time is guarding my accessed port (needle in my chest).

So here is how my typical two week cycle goes: Infusion week: Monday (roughly five hours) urine and blood test.  Before proceeding they need to make sure there are no proteins in my urine and my WBC count is high enough to further deplete it; also liver, platelets, and tumor markers need to be checked.  Then when Dr. Netaji gives me the thumbs up to proceed they access the port (stick a needle in my chest and start the lines.  I get anti-nausea, another side effect drug, saline, Avastin, Irinotecan, then a 3 second Fluorouracil (5FU) push, then they attach the pump with the bag of 5FU and I can go home.  I take alternating anti-nausea and anti-diarrhea meds during the day.  Tuesday is filled with nausea and trying not to catch my tube on anything.  I also am not supposed to shower and get my dressing wet.  On Wednesday I usually cheat and sneak in a bath or shower prior to going in, then I get another bag of anti-nausea, saline to hydrate (fluids), and then remove the pump.  Thursday, white blood cell booster shot.  Friday, anti-nausea and saline to hydrate.  Following week: Monday and Thursday I get another round of fluids, and maybe a WBC boost depending on my score.  Usually I’m feeling pretty good by Thursday through the weekend.  But it is short lived, because on the following Monday I start all over.  I have also been informed that my maintenance therapy may include the pump which I am really disliking each time.  I thought I’d get used to it, but instead I just loathe it.  But it is shrinking the cancer, so whatever it takes.

I’ve had several friends die of cancer since I started my treatments.  Two that stand out are one was a young guy with colon cancer with whom I went to high school (if you consider me young – I do). Another was a woman who had battled lung cancer once, was “cured.” It then came back to the other lung and she chose not to go through it all again.  That alone may give you an indication of what some go through, and how hard it really is.  In any case, I am acutely aware of how precious and unpredictable life is.  There is no reset button, you get one shot.

On the brighter side…my tumor marker scores went down another tic.  The CEA score was 3.2 in case you are keeping track at home. This has been a nice trend line considering I was at 15 just a few months ago.  Less than 3 is considered “normal.”  This is another indication that these meds are doing their jobs and things could work out.  I have often said, “God has led me this far, why would I believe he will let me go now?”  My hair is hanging on for dear life.  It is coming out and thinning, but still passable, no clumps.  No shave yet, but it probably won’t make it to spring.

The kids had a wonderful Christmas and got the things they really wanted.  Josie and Connor got new bikes, and nerf annihilator guns.  Santa brought tickets to the Wild Kratts show including a meet and greet.  Connor got a signed PGA flag from his Godfather who played the event this year.  We had Christmas Eve dinner at Nita’s mother’s house, and Christmas dinner at my mother’s house (of course we had tamales). It was calm and fun. Since I am unable to go into a big crowd of potentially a large number of sick people and I more than likely cannot stay awake passed 1AM; we are going to host a small kids’ rockin’ disco New Year dance and karaoke party at the house.  We let the kids each select one guest and we’ll officially welcome the New Year to Buenos Aires (9PM CST).  Then send the kids to bed after a spoonful of black-eyed peas.

I would also like to make a correction.  My mother read last week’s blog and said that when my grandmother gave my father the money he had been sending, he first paid cash for an extension on her house so it would become a two bedroom (it was the house I stayed in so many times as a kid I can’t believe it didn’t occur to me). He used what was left over to buy his used car, and that is the rest of the story.  Even though we lived in Austin (Manchaca) we still visited his my grandmother once a quarter and had her over for the big holidays.  We moved my mother into our neighborhood when Connor was born (Nita’s mom was offered but declined).  My mother was living way across town and I knew she needed more than an occasional visit.  She comes by a couple of times a week and even has the children sleep over at her home occasionally.  It’s so close we even go walk to pick them up sometimes.  I sincerely believe we added 10 years to her life by doing that.  It came from a story my dad told me that I have never forgotten:

There once was a man who married and had a child.  His wife was somewhat controlling and very into appearances.  When the man’s father got older, he invited him to stay in the house with them.  After a month the wife was furious.  She could no longer take the man’s manners, smells, farting, leaving clothes around, etc.  So she gave the husband an order, “Tell your father he has to go, I don’t care where.”  The husband didn’t have the heart to do it so he tells his son, “Give your abuelito this blanket and tell him he has to go, he can’t stay here anymore.”  The son does his duty and returns with half a blanket.  The father asks, “Why did you give him only half?”  The son replies, “The other half is for you, when I send you away from my house.” 

This story has eliminated any and all arguments about what we should do, and how much we should help our mothers (both fathers are deceased).  Love and take care of the ones who loved and took care of you.  Enjoy simple moments, kiss your children on the head and smell their hair.  There are incredible moments to savor every day, if we just take the time to notice.  Not every single moment is filled with rainbows and unicorns, but there are more than you probably notice.

Speaking of unbridled generosity, a very special thank you to all who took the time to read, share, and participate in either or both the cookbook and the go fund me campaigns.  It has meant a lot to us.  Nita cried when she saw the outpouring of support. The result is a huge portion of the anticipated medical costs for 2016 are covered.  Thank you all so much, God bless and BTHO Louisville!