This Place Looks Familiar

Hopefully the Blinatumomab won't make me mental again.
Hopefully the Blinatumomab won’t make me mental again.

Back on Blinatumomab 
Today I was readmitted to Simon Cancer Center to restart Blinatumomab.  As you may recall, I started on 28 mcg/day last Wednesday and then proceeded to go a bit loopy.  Today we are starting at 9 mcg/day to hopefully ease me back into the med.  Tomorrow we will go up to 28 mcg/day and I will continue at that dose until Tuesday the 8th.  On the 8th I will stop taking Blinatumomab.  But Rob, you say.  Isn’t Blinatumomab a 28 day cycle, you say?  Why yes it is, astute reader of Rob.  It has been decided to stop the Blinatumomab 2 weeks prior to the start of my SCT so that the antibodies will clear out of my system.  I will only get Blinatumomab for 7 days, but both Dr. Cripe and I are of the opinion that some cancer killing med is better than no cancer killing med.  So we’ll let Blinatumomab run for a week to seek and destroy any lingering leukemia cells it can find.  Then we’ll use high dose chemo and radiation to make sure we’ve killed everything.  That’s what I call the old one-two.

Lumbar Punctures Stick With You
I wrote about the lumbar puncture I had last week and the side effects I was having.  Today is the first day I’ve felt 100%.  Sunday I drove to Starbucks.  I didn’t think much of it, since I wasn’t on Blinatumomab and the mental issue had cleared.  However, part way through I knew I was in trouble.  I was too close to Starbucks to turn back, as I started getting a headache, felt like I could puke and was sweating profusely.  I kept thinking I might have to just pull over and lay in the van for a while.  Thankfully I made it home without issue.  And thankfully lumbar punctures are a thing of the past.

Dr. Nelson
Lindsey and I met with Dr. Nelson on Monday.  He is the transplant physician.  He’s very nice, very smart, albeit not a social butterfly.  Granted, with something as complex as SCT, you want the guy who’s mumbling in the corner solving a Rubik’s cube with one hand while he white boards the solution to some insane problem with the other.  I would love to listen in on a conversation with Dr. Nelson and one of his SCT peers.  But absent that, I just try to keep up with what he’s telling me in the exam room.  He’s done some research into Blinatumomab and antibody levels and some other things I didn’t quite follow (the car ride in with the LP side effects didn’t help).  The details aren’t important thankfully, because it would be impossible to relay them.  The important thing is Dr. Nelson understands what is going on and he gets a kick out of researching Blinatumomab and SCT.  The next time I will see him is when I’m admitted on 9/22.

I Still Have Leukemia
That probably sounds counter intuitive since I am in remission, however it is true on a certain level.  While I do not have active leukemia (> 5% blasts in the bone marrow), I still have leukemia cells hiding out in my body (think reasoning behind testicle boost).  The fact is leukemia is a very aggressive disease and hard to cure.  Only 40% of people diagnosed with leukemia survive long term.  That is why it’s important to do this short cycle of Blinatumomab and continue with SCT.  Anything you can do to suppress and kill leukemia cells is something you should do.  With SCT,  the hope/idea/plan is that the high dose of chemotherapy will help kill the leukemia cells that are hiding out, and my new immune system (which comes from the donor) will recognize any remaining leukemia cells as foreign and attack them.  It’s weird to think there are cells hiding out in my body, but it’s not really something I’m going to dwell on.  I’m in remission and that is all that matters.

So Principal Life & Disability is on my short list.  Actually they are on another list that begins with “S”, but I’m trying to keep this PG.  I’m still waiting on approval of my Long Term Disability even though I asked to start the process about 5 weeks ago.  My STD is over on 9/10, so I’m a little anxious.  I’ve called my rep multiple times over the past 10 days and haven’t heard back.  I think I might know why though.  I’m pretty sure I offended him.  You see, insurance companies love paperwork and I had to fill out multiple pages for my LTD.  One set of papers was to assess my ability to do another job while I’m being treated (aka, reasons to not pay me or pay me less).  Now, I know this form was designed to be filled out by anyone/everyone, so I shouldn’t complain.  However by the 7th page of answering questions about my computer skills, typing ability and likes/dislikes, I was a little tired.  So when I got to the question that said “Is there any other line of work you’ve always wanted to do?” I thought long and hard and got a bit sarcastic.  For the question about my dream job.  The job I’ve always wanted.  The job that will end all jobs…I put Disability Claims Analyst.  Maybe I took it a bit too far.

There are a select few of you who can pronounce the drug.  There are also a few of you who are working to pronounce it.  And of course there are many of you who’ve just plain given up.  As a last-ditch effort, I thought I’d give you a video you can use to learn how to pronounce Blinatumomab.  Natalie learned how to say it during my first cycle.  The other day she just casually used it in conversation.  So if a 4-year-old can not only pronounce it but remember the pronunciation a few weeks later, you at least have a shot of getting a syllable or two right.

A Duck Dynasty Prayer
Another round.  A final round.  Thank you again that treatments are available for b-cell ALL.  I pray for treatments this effective for all types of cancers.  That those praying for a miracle would get one, or maybe two.  We all have things that ail us and we don’t know when tragedy will strike.  Today let me concentrate on the things I have to be thankful for and not think about the things out of my control.  Let me focus on the good of God and not the troubles of man.  Let me dwell on the victory in Christ and not the short term losses in the world.  I pray that I can focus on what you’ve called me to do on earth and let the rest just be.  Thank you for another day.

6 thoughts on “This Place Looks Familiar

  1. AMEN I say loud and clear to your prayer. Amen Amen Amen. God is an awesome God and we encounter trials not as a punishment but as a means to get closer to our heavenly Father. God bless those who do not have this understanding and bless those beautiful people like Rob who can atest to that love and proclaim it to others.

    You are truly an example of living in Christ Rob. God will reward you richly.
    Love to all
    Aunt Liz

    Liked by 1 person

  2. Natalie is indeed the one who taught me to correctly pronounce Blinatumomab when she came for Camp UMAC in July, so I’m evidence that she’s a good teacher;-) and my friends who read Rob are always impressed when they hear me say the full name instead of calling in the B drug like I did before Natalie taught me:-). I think it’s also kinda coincidental that the first three letters of her name are in there- BliNATumomab. Praying for you to not go mental again!

    Liked by 2 people

  3. Great post, as always. Praying for you and this last drug round. Praying the side effects are minimal and that you don’t lose your marbles. Also, happy that STD stands for “short term disability” in this post, and not………well, ask Lindsey! You are a great inspiration to us all and a true testimony of your love and faith of God.

    Liked by 1 person

  4. Me again. I was reading my daily readings for today and this is the first reading and my prayer for you as this speaks of you!

    1Colossians 1:9-14

    9 That is why, ever since the day he told us, we have never failed to remember you in our prayers and ask that through perfect wisdom and spiritual understanding you should reach the fullest knowledge of his will

    10 and so be able to lead a life worthy of the Lord, a life acceptable to him in all its aspects, bearing fruit in every kind of good work and growing in knowledge of God,

    11 fortified, in accordance with his glorious strength, with all power always to persevere and endure,

    12 giving thanks with joy to the Father who has made you able to share the lot of God’s holy people and with them to inherit the light.

    13 Because that is what he has done. It is he who has rescued us from the ruling force of darkness and transferred us to the kingdom of the Son that he loves,

    14 and in him we enjoy our freedom, the forgiveness of sin.

    Love to all
    Aunt Liz

    Liked by 1 person

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