Status Quo
I haven’t updated in a bit because not much is going on.  Tiredness is my main side effect.  I’ve had minor fevers everynow and then, but nothing over 100F.  I would say I’m a bit slower mentally but nothing too bad.  I’ve also been told I’m a bit cranky, so I apologize if you notice.  I’ve been to the pool a few times to watch the kids from the deck.  I don’t usually stay too long, but it’s still fun to watch them and hear “Daddy Daddy, watch this!”

Getting My Hub Rubbed
Getting my hub rubbed is very important.  If it doesn’t happen regularly, I could have medical complications and end up in the ER.  It is also important that alcohol is involved.  Getting my hub rubbed is key in the process to make sure my blood is still flowing and things aren’t blocked.  I get my hub rubbed by different people.  Home care does it every other day and Lindsey does it on the days when home care isn’t here.  I had my hub rubbed in clinic on Wednesday, but I was a little disappointed.  The nurse only rubbed for a few seconds, which is dangerous in my book.  Granted you don’t want to have to rub the hub forever, but there is a certain amount of time that is required.  I told Lindsey that the next time we go to clinic, I’m going to rub my hub myself before I see the nurse so I can be sure it is done correctly.  So let this be a lesson to all of you.  If you have a PICC line, be sure they use alcohol swabs and rub the hub of the line for 30 seconds.  Otherwise you may introduce bacteria into the blood stream and end up in the ER.

And the Powerball Numbers Are:
I’m getting a CBC every other day with my blood draws.  Overall the numbers are trending up, which is good.  Granted my numbers trended up after the first round of chemo, so we aren’t out of the woods yet.

7/27: WBC- 1.5, Hemoglobin 8.5, Platelets 102
7/29: WBC- 1.6, Hemoglobin 9.4, Platelets 125
7/31: WBC- 1.6, Hemoglobin 9.0, Platelets 146

Duck Dynasty Prayer
Thank you God for continued health and limited side effects.  Thank you for care at home.  Thank you for good sleep at night and the energy that I do have during the day.  Thank you for trips to the pool and cuddles on the couch.  Most of all, thank you for another day.

I’m On Parole 
My discharge on Saturday was pretty uneventful.  I had a fever Friday night, but that broke on its own and I was good to go on Saturday morning.  Today is day 11 of Blinatumomab.  I’ll continue to get Blinatumomab for 17 more days and then I’ll have 2 weeks off.  The goal is to not get my parole revoked and have to go back to the hospital.  I’m not sure I can do too much to control that, but I’ll try.  After the 2 week break is up, I’ll start Blinatumomab for 28 more days.  We’ll check for remission before I start my 2nd cycle, and if I’m in remission we’ll start the ball rolling on the SCT.

Home Care
Home care will be at our house every other day.  They’ll change out my bag of Blinatumomab and draw labs.  They’ll also take vitals and do a general checkup.  We received a box full of home care supplies that Lindsey has organized in 3 plastic drawers.  We also keep the bags of Blinatumomab at home.  They’ll ship us 3 bags at a time, which we keep refrigerated.  One hour before home care comes (9 am), we’ll take a bag out of the refrigerator, so it’s not to cold when they hook me up.

And the Powerball Numbers Are:
My next lab draw will be tomorrow when home care comes.  I’ll then have draws every other day.  My Friday counts were up because of the steroids I received Thursday.  Saturday’s numbers came down a bit, but the WBC and Platelets are still trending up.

7/24: WBC 2.3, Hemoglobin 8.4, Platelets 89
7/25: WBC 1.3, Hemoglobin 7.2, Platelets 76

A Duck Dynasty Prayer
Thank you God for life at home.  Thank you for little hugs and little kisses.  Thank you for the cuddles I received today.  Help me to be patient with my treatment and take one day at a time.  Thank you for another day.

Sydney Hurt Her Finger
When the kids were here the other day, they were playing with one of the port hole doors where some bins are stored (see pic of Tucker below).  While playing, Tucker shut Sydney’s finger in the door which led to many tears.  Today the kids stopped by again and Tucker played with the door once more.  Of course Sydney wanted to remind everyone that her finger still hurt so she showed it to us.  I’ve been waiting for this day for quite some time.  I didn’t realize she hurt “that” finger, so I was a bit unprepared, but the moment was still as good as I imagined.  She raised her hand and then raised her middle finger to show me her boo-boo.  I love the innocence of a child.  All she wants to do is have her wittle fingwer kissed and I hope it’s a long time before she learns the meaning of a raised middle finger.  Now that I think of it, I’ll probably need to keep her away from Brian and Corry.

Camp UMAC
Today Camp UMAC kicks off.  Camp UMAC is when the kids go to Uncle Mark’s and Aunt Chelle’s for a few days each summer.  The kids love it and mommy and daddy like the break.  Camp UMAC has been scheduled for quite some time and didn’t take into account Daddy’s cancer schedule.  Granted, the timing really couldn’t be better.  I’ll be discharged on Saturday, and the kids will be back on Sunday.  I’m really not away from them for much longer than I would have been and the time away allows Lindsey to get things ready for my return and for me to have a bit of time to adapt to life back home with an IV Pump.  The kids stopped by today on the way to Camp UMAC.  Sydney didn’t want to come into my room because that was just delaying her trip to camp.  Eventually she did come in, and we obviously got the pleasure of seeing her finger boo-boo.  After 30 minutes or so, I got 3 sets of hugs and kisses goodbye and the kids headed out to Camp.  Have fund kids!  And if you want to stay for an extra session of camp, that is fine with us 🙂

Two More Sleeps
It’s hard to explain time to the kids.  Whenever they know something is going to happen, they always think it will happen that very day.  As we get closer to the date, we’ve taken to explaining the timing of things in terms of how many more times they need to go to bed and wake up.  It also ends up being an incentive to go to sleep, which is a bonus.  I will be discharged on Saturday, so I only have 2 more sleeps in the hospital.  I can see the light at the end of the tunnel (which is hopefully different that the big white light you are supposed to walk towards).

Continue reading “Sydney, What Do You Want to Say to Cancer”