No New is No News
Since I found out we are pursuing donor #2, nothing has really happened.  I know Dr. Cripe and Dr. Nelson have been in contact, but no determinations have been made.  Perhaps on Monday I’ll find out if I am going back on Blinatumomab or staying off.  As for the donor, we haven’t heard anything back yet.  Cheryl said that after she made the urgent request, the people on the donor’s side would contact the donor and they have to go through an information session on donation.  We don’t hear back until that session is complete and we don’t get any information on when that session might occur.  So for now it’s just hurry up and wait.  Hopefully this week brings more news.

Long Term Disability
On the plus side of things, I did find out that my long term disability has been approved.  The company still needs some medical records, but the payments themselves have been approved.  That’s a big relief.  I’ve learned a lot about disability over these past few months, so here are my tips for those of you at home:

1. First off, sign up for both short and long term disability.  I can’t imagine where we would be if I didn’t have disability insurance.  Even with my payments, I was sure to sign Lindsey up for both STD and LTD when she went back to work part time.  On top of that I signed her up for critical illness and a hospitalization policy.  Chances are you won’t ever need them, but when you do need them, you REALLY need them.
2. It sounds kind of odd, but you do NOT want your employer to pay for your STD and LTD premiums.  If your employer pays for them, then your benefits are taxable.  If you pay for the premium, then you do not have to claim the STD and LTD payments as income.  This can make a big difference as STD and LTD typically pay 60% of your salary/wage.  If taxes are then taken out of that 60%, you may only be getting half of your pre-disability income.
3. Talk to your doctor or nurse about the forms that need to be submitted.  You are your best advocate throughout your disability.  You want to know what is being said and have the opportunity to correct any mistakes.  It’s much harder to correct information once it’s in the hands of the insurance company.

NPS and CSAT
At hc1, we use the Net Promoter Score (NPS) as a gauge of customer loyalty.  I was reading a bit more about the NPS score while I am off (you know, because there isn’t much going on) and came across the CSAT score which is a gauge of customer satisfaction.  As I investigated CSAT more via google, I saw a link about becoming CSAT certified.  This seemed like it might be a good thing to do while I’m off since I have some time on my hands so I clicked the link.  Ya, apparently CSAT isn’t just an abbreviation for customer satisfaction.  The linked I clicked was to be trained as a Certified Sex Addiction Therapist.  While I’m sure the course material would be rather interesting, I’ve decided to not pursue my CSAT certification at this time.

IU Health Must Miss Me
Prior to the delay, I was going to be admitted on 9/22.  So it was with much curiosity that my ringing phone showed an IU Health number on Saturday the 12th.  The person on the other end was asking if I was supposed to be admitted on the 12th.  Apparently that was the date that was written down.  I explained that I wasn’t going to be admitted until the 22nd and it was probably just a mistake.  And then 5 minutes later the phone rang again.  Different person, same question.  So I gave the same explanation.  I thought all was resolved but later in the day I received another call from a nurse at the transfer center, “Did you know your doctor wants you to be admitted to the hospital today?”  Again, I gave the same explanation and thankfully this was the last call.  I’m not sure how the date was entered incorrectly, but thankfully I know enough about my own care to know that I wasn’t supposed to be admitted.  I could very easily see someone hopping in their car and driving to the hospital when receiving a call like this.  Who knows what would happen then.

One Day I Will Work Again
This past Thursday I stopped by the office to say hello and check in.  It was great to spend a few hours with everyone.  It was also great that it was only a few hours, as I was tired by the end of it.  One thing that crossed my mind while I wait for a donor is “could I work a bit.”  I think right now that answer is no.  My main lingering side effects, aside from fatigue, are a mental cloudiness and finding the right words.  I could definitely sense both were happening while I was speaking with people, even if they didn’t realize it.  My job requires a high level of mental acuity to keep track of many moving parts that are handled by many different people.  Right now I’m just not there.  I was able to have a great conversation with my boss, Esther, and we plotted out a potential timeline and plan for getting me back to work.  I’m still many months away, but I do look forward to being back in the office.

A Duck Dynasty Prayer
Limbo.  It’s not just a dance you do with a stick.  It’s where I feel I am at right now.  But there are things to learn in limbo.  I thank you for patience and perseverance.  I thank you for time with my family.  I thank you for a process that is taking place to get my stem cells.  I may not see the process, but it is happening.  That is a parallel in so many ways to how you operate in our lives.  Things are happening.  You are working.  We don’t always see your hand.  But it is there.  I’m thankful that I know we will get to transplant and I’m hopeful for the days that follow.  Thank you for another day.

Wet and Worn Out  
Today was our first day at Great Wolf Lodge.  So for so good.  Lindsey’s sister and her family joined us for the trip.  The kids have had a great time going down slides and splashing around.  We went down a big slide on a tube where everyone sits inside.  We went down as a family and Sydney may or may not have cried the whole way down.  She said she wanted to go, but apparently had second thoughts.  On another individual water slide Sydney was a little hesitant as well.  I did the most fatherly thing I knew and gave her a little push with my foot as she screamed “NOOOO!”  However as soon as she got to the bottom, she screamed “I want to do that again!” and proceeded to go down the same slide 6 more times. We  check out tomorrow, but we’ll spend part of the day back at the waterpark before heading home.

 

Continue reading Ohhhhhh, That’s Why

I Almost Had to Stay
So we left off last Thursday night with me in the hospital and a discharge plan for Friday.  Then rounds happened and set off a day of back and forth.  Every morning a group of doctors comes around to check in on you and bill you $200 for 2 minutes of their time.  We don’t usually have much to go over, which is a good thing.

On Friday morning the docs and I did our normal routine.  They’d ask me questions…any headaches, any nausea, any vomitting, etc.  And I’d give them answers…no, no, no, and more no’s.  I would utter so may No’s that I’d be sure to make Nancy Reagan proud.  Then after the questions I do some simple things like follow fingers or say “ahhhhhhh” and that’s it.  On this particular morning, I had some tremors.  One of my tests is to touch the doctor’s finger, which he has about 18″ from my face and then touch my nose.  I do this as fast as I can and then he tells me to close my eyes and keep doing it.

People, this isn’t an easy thing for someone who is 100% well, let alone someone with hand tremors.  Doing it with your eyes open is fine, but closed?  I imagine you are going to miss the doctor’s finger every now and then.  And on this fateful morning my finger did not touch his.  No, it silently brushed up against his finger in the middle of the air and then kept going.  Dr. Finger, as we’ll call him, turned to the resident and said that “passing” is new for me.  Then he said we’ll keep an eye on it and the gaggle of white coats walked out the door.

About 30 minutes later, Dr. Finger came back in and said he wasn’t going to discharge me until Saturday.  Really doc?  I feel well.  My handwriting is fine.  I have tremors, which is expected.  And just because I miss your finger I need to stay an extra day?  Now, Dr. Finger is a very experienced physician and someone I actually like to have take care of me.  I’m sure there’s something to this finger thing but I think he’s putting a bit too much stock in it.  I appealed to a higher power (Dr. Cripe) via text message but didn’t hear back.  Throughout the day there were plenty of “will he” or “won’t he” be discharged conversations.  Home care needed to know so they could hook me up.  Nursing needed to know because the unit was full and they needed the bed.  Dietary needed to know because they only had so much bone dry meat on hand.  Eventually Dr. Cripe came up to see me and he agreed to let me go home.  I’m sure glad he did because other wise I might still be in the hospital room trying to pass the damn finger test.

7 Days of Blinatumomab
My blinatumomab run ended yesterday around 5pm.  As you might recall, I was only going to take Blinatumomab until 9/8 so that it had 2 weeks to clear out of my system before SCT.  Aside from being really tired over the weekend, I didn’t have any side effects.  It’s interesting how 2 weeks ago I started on it and had neurological issues so we had to stop.  One week ago I start back on it and was basically fine.  I feel like I could have finished the full 28 days if need be.  Since I won’t be taking Blinatumomab again, home care stopped by today and picked up my 2 pumps and my in home vitals monitor.  I won’t miss that damn thing telling me to step on a scale twice a day (but it does it so politely).  I was also able to see all 4 of my home care nurses within the past week, so it was nice to say goodbye to all of them.

T-Shirts Are IN!
Good news!  The T-shirts are in.  If you missed your chance to order a Robstrong t-shirt, it’s not to late.  They are still for sale at this link: http://shophc1.com/collections/robstrong

For those of you that ordered one and will be picking them up from Lindsey or me, I’ll probably get them from hc1 tomorrow so you can get them from us any time after that.  If I don’t contact you about them, just contact me.

PICC is OUT! 
Since I’m no longer on Blinatumomab and will need a different kind of central access for SCT, I was able to get my PICC out today.  They gave her one last job of being used for a blood draw in clinic today and then they pulled her out.  I did manage to get a pic of my PICC during a dressing change the other week.  So for those of you who weren’t totally sure what one looks like, here it is.  Now I bet you’re glad I didn’t end up with a urinary catheter…

Continue reading Onward and Upward