Enjoy It While It Lasts

Pool Time
Not only did I go the pool this past weekend, but I was able to get in it!  I bought a waterproof cover for my PICC (which you can see in the video).  You can’t do anything crazy with it, because it could shift and let water in, but as long as you are sensible, it’s waterproof.  I was able to play with the kids.  Natalie swam to me without her floaties, Sydney jumped to me in the water, and I threw Tucker up into the air and in the water.  All 3 also rode on daddy’s back and let daddy pull them through the water.  It was a lot of fun and something I’ve been looking forward to.  Hopefully we’ll go back again before my black backpack makes a return.

This morning I went to the Southport Road Starbucks (not that one, the one across the street).  Lindsey was at work (thanks babe!) and the kids were at Miss Lindsay’s (thanks Miss Lindsay!), so I was out in society relaxing a bit.  A morning Starbucks used to be normal for me.  Not frequent, but normal.  I never used to drink Starbucks and then they went and built one across the street from my former job.  After that, I became quite the Starbucks drinker.

Scene:  A typical morning at South Campus
Eric: “Hey Rob, you wanna go to Starbucks?”
Rob: “Well sure, but it’s 9:15 on a Monday.”
Eric: “I gotta get out of here.  I think I’m going to lose it”
Phillip: “Uh oh.  Sounds like someone’s got a case of the Monday’s”
…And off to Starbucks we’d go (sorry Dave, there were only 3 parts available)

After I left IUH, I didn’t stop at Starbucks stores nearly as much because we have a Starbucks machine at hc1 :).  Still, I would go there every now and then to work, meet with people, or just get stuff done.  Sitting at a Starbucks, drinking an overpriced coffee and listening to alarming conversations of complete strangers is a nice normal thing to do.

Lindsey and I at Cooper's Birthday Party this Past Weekend.
Lindsey and I at Cooper’s Birthday Party this Past Weekend. Sill looks like I’m sporting the stache (even though I have a full goatee)

This Week’s Activities 
Cancer kinda plans itself.  There is a prescribed set of treatments I follow and my medical team sets up all the steps.  It’s not like I can say “sorry cancer, that date doesn’t work for me, let’s find another.”  Cancercation doesn’t plan itself.  I suppose that’s good.  We have time to sleep in and do what we want.  But there are a few activities that need to be planned or activities that I want to plan for so I can do them.  We always go to the State Fair.  Every year since the girls were born, we’ve gone with the kids.  The first year was when the girls were not quite 2 months old (and we’re just a couple of weeks removed from the NICU).  Tucker was 1 month old for his first State Fair.  To go this year, I thought I might have to get a scooter again, but I’m feeling well enough I may be able to walk (or have Lindsey push me in a wheelchair :)).  Elephant Ears, here we come!

Along with the fair, we want to go to my mom’s to go out on the lake.  I’m also planning on visiting my office to see all my coworkers.  And of course Lindsey and I need to go out on a date!  We’ll do a few more unplanned family activities in there.  Cancercation should be a good time!

Ten Days in the Hospital
So what does 10 days of hospitalization to initiate Blinatumomab cost these days?  If you are IU Health, the list prices for such treatment is around $193,000.  If you are Anthem, the discounted price you actually pay is around $121,000.  Those amounts are just amazing to me.  I think about how I have insurance and don’t pay a dime of that (since I’ve met my out of pocket max).  I think about others who have a 20% copay no matter what and wonder how they pay that.  Or perhaps those who have no insurance.  And then I think about people who think $121,000 over 10 days is a good amount to spend on a vacation.  It’s a crazy world we live in…

Courtesy Flush
I forgot about one small detail while I’m off the IV infusion.  I didn’t think there was anything I needed to do, but I was wrong.  I still have my PICC.  My PICC still has 2 lumens (tubes) that enters my (rather large) basilic vein and travels to my heart.  It would be bad if blood got into these 2 lumens and clotted.  That would block my lumens and I couldn’t be given meds through the PICC (think clogged drain).  If that happens, the all sorts of fun stuff is done to try to dissolve the clot.  So once every day, we need to flush both lumens.  By flush, I mean we squirt saline and heparin into the lines.  By “we”, I mean Lindsey.  This is another area where it’s great to be married to a nurse.  Lindsey doesn’t have to think what needs to be done.  She gets everything out, keeps everything sterile, and moves with the dexterity of someone who deals with 2 kg humans.  I just sit there and watch.

Some days though, it’s hard to remember to get the flush done.  Yesterday was one of those days.  We thought about it a few times, but never got it done.  So there I was at 11pm, with Lindsey in bed, thinking to myself “Crap, we didn’t flush the lines.”  Normally I’d just go to bed and have her do it in the morning.  But today she is working, so she won’t flush the lines until tonight.  That would have basically been 48 hours without a flush and you don’t want to leave anything sitting for 48 hours without flushing.  I suppose I could have had her do it early  in the morning before she left, but that would have required me to wake up early.  So I made the only other logical (and somewhat dumb male logic) decision to just flush the things myself.

One thing you have to understand about PICC lines is they only come out of your arm a couple of inches.  The PICC is in my left arm, so I can only reach it with my right hand.  The change itself is no easy task with one hand because you have to press the syringe into the lumen and then twist it to make the connection.  You have to do this 4 times (one saline syringe and one heparin syringe for each lumen).  Really it’s a two handed job, so of course this called for some ingenuity.  I’m not saying I got it on the first try.  I’m not saying I got it on the 2nd try.  But through some trial and error, which involved taping the lumens to Tucker’s train table and contorting a few body parts, I was in fact able to get the syringes attached to my lumen to flush it.  And of course I rubbed my hub with alcohol pads long enough to make any infection control nurse proud.

A Duck Dynasty Prayer
Thank you God for simple prayers.  Thank you God for another day.

10 thoughts on “Enjoy It While It Lasts

  1. Ok. I’m totally losing it right now picturing you taping the line to the train table!!!!! You’ve lost your mind!!! (AND, it’s impressive). You know, the meal delivery “first string” girl knows how to do this too and could have helped today!!! You crazy person😂😂😳😳😳😳

    Liked by 2 people

  2. Those PICC lines are fun..Not!! I remember how hard it was trying to flush those by yourself. Thank goodness for family nurses and Lindsay. I pray the you will be healthy enough soon. It sounds/ looks like you are having a wonderful summer with the family. Keep having lots of fun and stay positive. My prayers and thoughts continue for quick remission. Take care.

    Liked by 2 people

  3. Rob.
    I’m not the writer Heather was but I want to say thank you for sharing your journey. I pray for you and watch for your publishing daily ; when you don’t post I put up extra prayers. I send you my love, respect, prayers and wishes for a lifetime of health and happiness. Hugs Deb Draper

    Liked by 4 people

  4. It appears that your short time away from cancer is fun! I’m happy that you are feeling well enough to play with the kids and do some regular stuff. You and the PICC….sounds like an attempt at a solo game of Twister! Continuing to lift you up and thanking Him for giving you another good day.

    Liked by 2 people

  5. An early morning enjoyable Reading Rob. Grateful you are having fun days, and Thank You God you are feeling so good. I too pictured you at Tucker’s train table; too bad you didn’t set up the video camera! 🙂 I am with you every minute and so happy to spend time on the lake with you! Love you so much! Mom/Bammie

    Liked by 2 people

  6. You know they say God puts us exactly where He wants us and I am definitely thinking God put Lindsay with you because He knew you were going to need her and her nursing skills 🙂 Still loving your humor and still praying for you all!!

    Liked by 3 people

  7. Oh Rob I can only imagine the contortions you were engaged in to flush that picc line. Youjust crack me up. Love your sense of humor. You and Kris are so much alike!!!! So glad that you have the time to enjoy what is important in life. While cancer is a real bummerat times it also allows an individual to “smell the roses” so to speak. God’s healing hand is over you, Lindsey, and the kids. They all look so happy. You two are doing a wonderful job of keeping them feeling safe and loved.

    Keep up having as much fun as you can, keep your life active (my oncologists said the best favor I could do for myself is to keep my blood over oxygenated with physical activity). You are truly centered on the work of God and bless our lives tremendously. Praying for a positive reading of remission on the 24th. But we all know it isGod’s Will that will be done on that day!

    Love and hugs
    Aunt Liz

    Liked by 2 people

  8. Good Morning Dear Rob and Lindsey:

    My heart is so full of love for you . Today as I prayed I thought about this verse:

    “And whatsoever ye shall ask in my name, that will I do, that the Father may be glorified in the Son. If you shall ask anything in my name, I will do it.” John 14:13-14

    So I have been asking over and over again that you have achieved remission and can move forward with the stem cell transplant. If that is not God’s will, then to please give us the wisdom and the perserverance to continue His work for His glory and to offer up everything to God.

    Thank you for being a blessing to all of us who follow you and thank you for showing so much grace and dedication to God.

    Love and Hugs
    Aunt Liz

    Liked by 3 people

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