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.
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.
My PICC during dressing change.
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…
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.
Thank You For Another Day 