#47 & A Rookie Mistake

Patrick was accepted into the trial and he began treatment on Thursday, August 25th.

“Trial Participant #47” had a smooth and successful first day in his assault on the cancer cells trespassing in his body.  They’ve taken up residence in quite a few places, including his bone marrow, but that’s common with MCL.  Because it’s a cancer of the lymphatic system, it gets around, and invades lymph nodes all over the place.  But that’s what we’re fighting–  MCL in multiple locations.  We are “only” fighting MCL and no other cancer.

So now that we’re off and running, here is the schedule that many people have asked about.

Patrick will go once a week for four weeks to receive the IV drip of Rituximab, then once a month for that same treatment. Our day is Thursday, always Thursday. This will go on for at least six months and a maximum of 12 months.  During that time, he is also taking Ibrutinib daily along with other meds here and there.  This is Part One, the immunotherapy part. The trial.  This is NOT chemo.  Part Two is the ugly chemo part and let’s not talk about that yet because just no. Ibrutinib is the breakthrough game-changer.  Less toxic than chemo, but still effective.  Three cheers for Ibrutinib and the rock star doctor whose bright idea it was to combine it with Rituximab to reduce the amount of chemotherapy needed.  Hmmm….I wonder what rock star doctor thought of that??

Dr. Wang.

So yesterday, they warned Patrick that he would have the chills and shiver like crazy for quite a while and maybe get a rash or fever or some other fun stuff.  He didn’t have any chills. He didn’t shiver.  There was no rash.  No fever. He did fine for the entire six hours of the IV drip.  It goes slower the first time.  The next ones will only take about four hours.  But don’t be fooled, it’s still a 12 hour day that starts with blood work at 7am, a meeting with Dr. Wang mid-morning, the IV drip and lots of down time in between. By 7pm, we were done and we were spent.  But we did it!  Treatment DAY ONE was in the books.

The rookie move of the week goes to yours truly who was caught unprepared and unorganized.  This does not happen very often. Just sayin’.  I thought I knew our schedule. I thought I knew the plan. HA. NO. We actually believed we would get the green light to go home by the next morning after Patrick’s first treatment.  We figured they’d suggest we spend the night, make sure he didn’t run a fever, and then head home today.


Not even close.

When Dr. Wang said we needed to stay nearby for monitoring, just in case, and come back Monday for another round of blood work and a follow-up with him, I smiled and said okay. Whilst crying.

My inner voice said something a little different.  “I have children. They have a volleyball tournament.  We packed for two days.  I didn’t bring my “things.”  I didn’t even bring the JUICER for crying out loud.  WE CANNOT LIVE WITHOUT THE JUICER.”

Deep breaths.  Yoga breaths.  “We do what we have to do.  It’s important. The kids will be okay.”  That wasn’t me talking. That was Dr. Wang. He actually said that. Like he’s some kind of know-it-all expert who’s been through this before or something.  He was smiling when he said it.  He has a great smile.

So here I sit in my friends’ cozy apartment once again.  We had a nice time with them the other night, by the way, before they went home for the weekend. Found a great restaurant, looked around the table a few times and said “What are we doing here right now?  Why aren’t we in Downtown McKinney having dinner together.  This is so bizarre”.  But we’ve covered that.

So, today the hubs and I went shopping and got what we needed, and a few things we didn’t need. #RETAILTHERAPY.

I’m comfortable here at my friends’ place, typing on my new laptop (do not even judge) and I am for sure grateful that my dear sweet husband is sitting next to me, fever free and feeling well.  I appreciate that his medical team is so diligent and careful with his health and progress.  I really do.

But I miss my kids.  We just up and left them on Wednesday. We had to tell them last night that we weren’t coming home as expected.  We apologized. They said it was okay.  I hope they meant it.  I’m not exactly sure they did.  They’re taken care of and they’re staying busy.  But it still stinks.

And we had to sell our Coldplay tickets. FLOOR SEATS, people.  Patrick’s Father’s Day gift from his three girls. We were going to go as a family.

Cancer is a dirty thief.  Can’t wait to kick it to the curb.