Piece of Cake

So far, so good on the handwriting.
So far, so good on the handwriting.

Kicking It Up a Notch
The last 24 hours has gone well.  I’m done with my 9 mcg dose and I’m now on my 28 mcg/day dose.  I fully expect to get a fever tonight, simply because I always get a fever when starting Blinatumomab.  Since Blinatumomab causes my T-cells to attack my B-cells, the T-cells will give off something (I forget and don’t want to bother to look it up) that tells my body the T-cells are battling infection.  When my body receives that signal, it joins the fight by turning up the heat.

My handwriting is its normal bad, which is acceptable from a neuro check standpoint.  Lindsey didn’t think my sentence was too funny, but I like it.  I think the issue is that she is always around my comedic genius and has become accustomed to it.  It’s the price she has to pay for saying “I do”.

Transplant Update
Not too much new on the transplant front.  I moved my Radiology Oncology Consult to 9/8.  I’m not really sure what we’ll talk about, because I’ve already met with the Rad/Onc Doc and I’m for sure getting the procedure.  But I guess it’s something to check off the list.  I also found out I needed to speak with social work.  Angela, the BMT social worker stopped by and we had a good chat.  No meal tickets nor gas cards though :(.  I also need to meet with Cheryl tomorrow to sign some forms.  Finally, I thought I wouldn’t see Dr. Nelson until my admit, but apparently protocol requires me to get some labs and see him within a week of my transplant.  Again, not sure what we’ll talk about, but I might think of something by then.  Maybe I’ll bring a rubik’s cube.

Disability Approval
Yesterday I wrote about how I’m still waiting on my disability approval.  Today I got some movement.  A needed request was sent to Dr. Cripe’s office and Stacey (the RN) sent the info in today.  However, progress also meant receiving a form that I asked about from the very beginning.

From the very beginning I asked about approval of my LTD.  I read through the policy, and it seems like it should be approved without issue, but insurance companies don’t like paying out claims so I wanted assurance.  Principal finally started the process, but long after I had asked.  So today they sent a form to fill out to inquire about the Leukemia being a pre-existing condition.  Realize they have my medical record so they can see when I was originally diagnosed, when I achieved remission and the visits that have happened since.

For my LTD policy, they look back 24 months for pre-existing conditions.  In June of 2013, I was still being treated for ALL, so it counts as a pre-existing condition.  Now there are 2 ways where they will still pay LTD.  The first way is if I was not under treatment the 6 months prior to the policy (8/1/13-2/2/14).  The second way is if I was insured for 12 months without receiving treatment, consultation, care or medications.  Now the reason I wanted to start this awhile back was a fear of how Principal would define “treatment”.  I was in remission in February of 2013 and my last chemo was July of 2013.  I did see Dr. Cripe for follow up appointments, but since I was in remission, these shouldn’t be considered treatments, as there was nothing to treat.

So there shouldn’t be any issues, but at the same time the form I received today makes me a bit suspicious.  If I’m not approved, I’m sure there is an appeal process and it’t not the end of the world.  I just wish we were going through this 6 weeks ago when I asked about it rather than the week before my STD is over.

For Those of You Disappointed I Didn’t Say More About my STD (aka, dirty nurse humor) std-dark
As I mentioned yesterday, on 9/10 I will no longer have my STD.  It’s an STD that’s lasted 12 weeks now.  Through chemo, antibiotics, antivirals and other meds, my STD has not gone away.  This actually isn’t my first STD.  I’ve had others, but this is the first one that’s been active.  Lindsey is affected by my STD as well.  While she’s not the one who acquired it, I freely share the STD with her.  Every Monday the STD shows up.  I take it to the bank and give it to the teller.  Then we spend the rest of the week taking my STD to the grocery store, the gas station, even pre-school.  Really, the STD can be taken anywhere and given to just about anyone.  Once it’s finally gone on 9/10 I will miss my STD, but I will most certainly try to acquire another one.

Great Wolf Lodge great_wolf_lodge6
Ya, I know.  I just wrote about potentially not getting Long Term Disability and now I’m posting about Great Wolf Lodge (GWL).  I’ve been told to not worry about how we spend the money we are given.  I’ve heard the words, but my conscience still propels me to give an update every now and then.  Now don’t worry, we didn’t blow the entire wad at GWL.  I continue to be humbled by the donations we’ve received.  They have paid for my 2015 OOP expenes, gas and parking for Lindsey to visit me, as well as pre-school and gymnastics for the kids.  I’m now putting money away for the expected 2016 OOP and other expenses as they come up.  We are most certainly making ends meet, so don’t worry.  But I very much do appreciate the donations.

With that said, we’ve received some recent cash with the specific instructions to do something fun with the kids.  My definition of fun with the kids is a trip to Best Buy to buy something new for daddy.  Apparently though that doesn’t pass muster.  So my 2nd idea for fun with the kids was an overnight trip to GWL.  We’ve been there once before with my sister and her fam and Mom and Step Father.  We didn’t necessarily plan to go back while everything is going on, but I wanted to do something as a family before I’m hospitalized and this ended up being it.  So on the 15th we will head for GWL, play all day, spend the night and then play some more.  It will be great family time and tons of fun for the kids.  Good memories to get us through the weeks ahead.

And the Powerball Numbers Are:
I have some numbers from Wednesday, but they didn’t draw a CBC today.  They did draw a CMP and found my phosphorous to be low.  That happened last week, but they redrew and it was within range the 2nd time.  Today they gave me some sort of powder to put in my drink to boost my levels.

9/2/15: WBC 5.3, Hemoglobin 13.5 (my first normal value this summer!), Platelets 195

So the counts continue to fluctuate, which is expected.  This is what goes on in all our bodies, it’s just we aren’t tested every day to see it.  The counts are expected to go down while I’m on Blinatumomab and then come up before with drop the hammer with SCT.

A Duck Dynasty Prayer
One more night.  Please God, let it be one more night.  Then I can go home.  I can spend time with my family before I walk out the door of my home one last time with the immune system I was born with.  I will return with parts of someone else’s body inside me.  I’m confident in you.  I’m confident in the process.  But that confidence comes with the realization that not 100% of people live through BMT.  I pray for your protection.  For protection from infection.  For protection from treatments that will harm my body.  Thank you for a few more days of Blinatumomab, two weeks off, and all the things that await after that.  Thank you for another day.

9 thoughts on “Piece of Cake

  1. Social worker. Meal tickets. Parking passes. Please, just for giggles, as for a translator. Or maybe a free car seat. Or even a visit from the lactation specialist. Praising God for your tolerance of this round of med’s. Praying for a resolution to the LTD. Get done. Get out of there. And have fun with your family!

    Liked by 2 people

  2. T-cells are designed to throw tantrums. That’s what the “T” in T-cell stands for. And they don’t throw anything off to cause your body to get a fever. It’s all that heat they generate in throwing a tantrum. That’s what gives you a fever. I didn’t know this. Looked it up on Wiki. I think Blinatumomab is a T-cell irritant.

    Love, Uncle Claude

    Liked by 2 people

  3. So I’ve worked part-time in a medical setting for over three years now and I still can’t get used to the 3 letter codes that people use. Rob, could you list on your blog, translations for the codes: LTD. STD, GWL, PIE, etc. I saw a three letter code on a piece of equipment at the hospital once and tried to figure out what it was. The equipment was a plastic, cylindrical tube used for transporting files, specimens, etc from one part of the hospital to another. Like the ones used at the bank. On the top of the tube were the letters LID. I couldn’t figure out the three letter code for LID. What did those letters stand for. Someone calmly replied, oh that’s the lid. Oh. Have fun with the KIDs and FAM at GWL.

    Liked by 3 people

  4. Hey, Rob. You’ve still got it! :). You got me with the STD line for a couple of seconds. God bless Lindsey for putting up with your comedic genious all these years! So glad you are tolerating the increased dose well and will get to go home soon. And glad to hear you have a special trip to GWL planned. Sounds awesome, and you all deserve it!

    Liked by 2 people

  5. Have fun at GWL. I wish they had one of those just for senior citizens. Real warm water and gently undulating lazy river filled with really comfortable floating recliners.

    So many procedures for you to endure, prayers continue for you and your family coping with the process. And of course prayers for ultimate success and long life.

    Liked by 2 people

  6. Enjoy the special time with your precious family. You all need it. Praying the LT
    D payments are approved quickly.

    The Lord bless you and keep. May His light shine upon you and bring you continued peace of mind as you await the upcoming transplant.

    Liked by 2 people

  7. I enjoyed being with you and your family; I am just now posting cuz my I-Pad doesn’t seem to want to “play nicely” with “leave a reply”. Again, a wonderful read, and such great humor. So grateful I was there to welcome you home and receive my wonderful “Rob Hug”. Love you so much!

    Liked by 3 people

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