What happens if I get the chemicals daddy?

What happens if I get the chemicals daddy?

Friday was chemo final exam day. They flushed my port and read through all the drugs I would be taking into my body and the likely side effects and countermeasures. They explained the cadence of my new bi-weekly routine and went over diet and nutrition. They also carefully explained the care and feeding of my port and not to freak out if it seeps a little after treatment. They calmly and matter of factly clarified that the kids would be more dangerous to me than I to them…after all the drugs were going to destroy my bone marrow. They also sent me home with a hazmat cleanup kit.  Apparently I would be sent home with a bag of poison that was so toxic it had to be administered over a 2 day period instead of one big push into my system.  Should there have been a leak I was to use said hazmat kit and keep the kids, dog, and wife away.  Lovely.

I received a nice compliment from the head nurse was about my writing.  She said that I was not only helping people but maybe even saving lives.  That it is now very important to keep documenting this journey because apparently my blog is a semi-entertaining way to get the information out to many who are afraid or too embarrassed to ask questions.  So I was encouraged to make and keep it graphic, reader beware, there will be poop talk.

On Monday they “accessed the port” which means they stick a line into your handy subcutaneous receptacle and started pushing medication, saline and poison.  To be honest it wasn’t that bad.  The folks at the Texas Oncology group are really great.  They even had a couple of volunteers circulating one of whom gave Nita and me a foot massage.  Had to wear gloves for mine.  They gave me anti-nausea meds and anti-diarrhea meds prior to hitting me with the hard stuff. I renamed our little area "chemo camp" to the delight of the campers and staff.  I was able to choke down a little lunch as well.  The camp nurse gave me an oracle’s advice, “From now on…never trust a fart.”

 For my first day they put me in the social wing.  There were some very nice people who came in and who had bubbly attitudes.  We shared stories and got along nicely. There is a feeling of community that is part of the process.  Later an older gentleman came in who had exactly the same cancer I do.  They sat him next to Nita and me and flat out told us to ask him anything.  So Nita took the bait and off she went.  As it turns out he was given six weeks to six months to live. Now four years later he is still around.  His original tumors have not returned and the “mets” (cancer that has metastasized to other organs for the in the know crowd lingo) started shrinking, but a couple have come back.  Quality of life has been okay, he lives alone and drives himself wherever he needs to go.  He recently took a vacation to New Orleans and skipped a cycle (scheduled drug infusion) to have his fun.  It left us very optimistic.  He told us a story about different regimen he was taking that forced him to keep work gloves by the refrigerator due to his cold sensitivity.  But he switched to the chemo we’re both on now and he said the side effects weren’t so bad and he even kept his hair (I am not optimistic).

Then they hooked up my pump and sent me home.  After being stuck as many time as I have in the last two months, it was easy. For driving I’ve rigged up a little device that protects my port from the seatbelt (by rigged I mean I stole one of my daughters foam blocks, but it works beautifully).  But then came the annoying and extremely cumbersome aspect.  I essentially have a leash. Everywhere I go, everything I do, there is my little shadow giving me a little blast every 15 seconds.  The kids were pretty curious and to ease into the new dynamic we played a game at dinner.  We had to be super quiet to see if we could all hear my pump go off.  We’re trying very hard to make everything seem as normal as possible and non-threatening (or at least not scary), but there are some things that don’t translate.  The first day wasn’t too bad.  I stayed ahead of the nausea and diarrhea with my meds.  Tuesday was very much the same except I couldn’t shower, I was able to take a sponge type bath on Wednesday morning, but this is not going to be fun every other week.  Wednesday would not be as easy.

My wife had surgery on Wednesday and was scheduled to be hospitalized overnight.  It was a planned surgery and if you remember all the way back to the beginning, it was at her consultation that my symptoms first appeared.  Well Wednesday night I had the kids alone and it was the first day my chemo pump was removed.  I’m essentially filled with the chemo and it will flush in a day or so.  So here I am playing Mr. Mom.  Getting everyone fed, dressed for bed, making lunches for school the next day, and setting out the next day’s clothing.  I also had a big presentation for Thursday so I spent every moment that I wasn’t hooked up to a machine, or being with my wife in the hospital, or taking care of the kids…working on a deck and talking points for a presentation. 

Later on Wednesday night, Josie came downstairs and said, “Daddy, Abuelita (my mother – Grandmother in Spanish) forgot to brush my teeth.”  Off I go up the stairs and she reaches out for my hand.  Heartbreakingly I stop by the pantry and get two latex gloves, and then grab her little hand and take her upstairs.

We get to her room and I brush her teeth, kiss her on the head and wish her sweet dreams.  I then have to explain the glove protocol without coming out and saying, “Daddy is a big piñata full of poison.”  She asked, “Daddy, what happens if I get the chemicals?”  So I have to further convince her that I’ll be really careful and that I’m not dangerous, I’m just taking precautions, and mommy will be home tomorrow, etc.  But this is all just a smack in the face to my new reality.  How many times did I try to get out of putting my sweet kids to bed to watch a game or a movie, or catch up on some work?  Now when I wanted so badly to crawl into bed with her, read her another story, and cuddle with her, I had to maintain a moderate distance and wear gloves.  The things we take for granted.

Thursday morning went relatively smoothly.  Josie woke up about 1:30 AM, scared in the night that her mom was in danger.  I put her back down and luckily they both slept through the rest of the night.  Morning breakfasts, teeth brushing, and dressing were somewhat uneventful.  A college friend who lives in Germany sent a big box of chocolates and some toys that kept the kids pretty excited and distracted... and then noon hit.  I was fine on my presentation call but felt my body slowly crashing.  It was like feeling all your energy just draining as if you were watching an hourglass empty.

After my presentation, I called my wife as I was crashing, knowing that I still had to go pick up my son from school.  As luck would have it my wife had a shitty night nurse.  So she wasn’t moving as soon as the doctor ordered and her pain management was off schedule because the nurse was not on a timely rotation.  Short version – Nita would not be coming home on Thursday.  One more night in the hospital for her and one more night of Mr. Mom for me…on fumes.

The headaches are manageable and the diarrhea is no worse than making a bad food choice on a given day (while using the meds), I’m feeling more fatigued, but still sharp.  Actually that is what I worry about the most.  I think I need to add that to my medical power of attorney.  If my mind goes, unplug, I will be useless to everyone at that point.  Nita will now come home on Friday and start her recovery.  The kids are pretty excited about helping her out and some friends came over and organized both our pantry and gift wrapping closet (doesn’t everyone have one)?  Funny aside, Nita worked at Foley’s 20 years ago and was in the gift wrapping department.  She takes it to an insane level of detail.  But her gifts are unmistakable, while mine look like a homeless guy’s beer in a bag.

Thanks to my friends and family members in the dental world.  They all gave me advice on how to protect my teeth, gums and mouth from other effects of the chemotherapy.  Another friend in my situation asked about my mouth sores.  I told her I had none and she was amazed and agreed that as long as I kept up the baking soda, I probably wouldn’t get them.  I was a week ahead with my preventative measures. So far so good.  Food taste has also started to change a little, not drastic, but it’s still the first cycle, I’ll keep you informed as we go along.

So I’m learning the nuances of how to deal with my symptoms proactively when I can and I’ve got a couple of cycles to play with until Halloween and my children’s birthday party (we do a joint party).  I think I’ll figure it out well enough to be functional, besides NFW I’m missing it.  And let’s face it, I have to have it completely worked out by Christmas.  No chance I’m making the kids wait on the couch staring at a loaded tree while I hit the outhouse.

PSA announcement.  A lot of other survivors have reached out to me with advice, shared their stories, and generally well wishing.  One thing I’d like to pass along to all of you out there.  If you are dealing with lower back pain, and you can’t kick it, chiropractic is sort of working, maybe acupuncture…go get a colonoscopy.  It could be more than you think.  It is anecdotal evidence at this point, but more than several data points.  I’ll just leave it at that.

Finally the Alabama v A&M game was all it could be.  I had a house full of friends, ribs, wings, brisket, fajitas and the bourbon flowed like wine.  My last day off the wagon was enjoyable.  The result obviously could have been different, but my new attitude/barometer helped me react differently. In years past I would have gone off the grid and been pissed off for a week.  Now, I bask in the friendship and comradery, play with my kids, and even tell jokes at dinner.  I’ve mentioned it before but this is a gift. Not every day is great, but it’s a new day I get to experience.  What I do with it is my choice, how I react to it is also my decision.  So I choose to be thankful, find new ways to challenge my mind, and express my love for God and my family.  The goal is to stay above room temperature and find happiness in the simple things.  My blessings are bountiful.  So far so good.

New wrist bands are in if you are interested.  You can reach out to me at TeamMarco@austin.rr.com.