Life From Here--The Rat Years Part 4

As most of you know I don’t usually post this often but so much is happening so fast! I go back to Duke Wednesday but here’s the latest.


I was at the Duke lab at 7:00 AM last Wednesday morning. Duke is different from the trial lab; Duke handles what is known as the “standard of care” monitoring. So my first stop is a blood draw for Duke and then I go up to the trial lab to start an IV (redundant I know). They take an EKG and then I return for a blood draw every two hours after that.

When the girls in the Duke Lab saw the schedule they walked in with a hospital gown….you know, the one that barely ties in the back….I said I’m not going to wear that! They said well we brought 2…one for front and one for the back……I told them No. They apparently weren’t warned about me. So I head up to the trial lab and say hello to Ted (the real rat….he was wearing a gown, lol).

As a teaching moment, a lesson I Pray you will never need, let me just say, YOU have to be in charge. Sometimes it’s the little things. For instance, when you check in at the Duke lab they give you a pager just like you would get at a restaurant. One is heavy, they gave me 2, one for the trial and one for the Duke appointments……I only had 2 appointments with Duke and was already at the 1st one! I carried those things around in my satchel (man purse) for the first hour and then went up and told them I wasn’t going to carry them anymore….they said I had to….should have seen the look on his face as I walked away. I made all the appointments.

Next, in the Trial lab I gave blood and they said we need a 12 hour urine specimen and preceded to hand me this curved plastic thing that looked like a ½ gallon milk jug….HUH! Every time I peed it had to be in the jug. OK, I was rushed, so I take the jug with me because it was my first chance to try to eat. It was in my “satchel” and empty, but I had to get to my medication so I pulled the jug out while searching and eating a scone…………it was not all that well received in the café…… I went down to the Duke lab and charmed the staff into letting me have 2 sealed specimen jars (small ones) and took the jug back to the trial lab….once again, they didn’t like it and each specimen had to be emptied into the jug!

Can you picture all that….me walking around, where everyone else is clothed, wearing a hospital gown, carrying 2 pagers…….and a jug full of pee! How much sexier can you get!

You know I’m not a complainer but I have to say this regime is a challenge. Some mornings I wake up feeling relatively good but other days I feel like I’m coming out of a coma. Just because the drug is oral doesn’t mean it’s not potent, this stuff isn’t for babies. It usually takes until noon before I’ve eaten “enough” and taken all the drugs I need to take to feel better. But Hey! I’m vertical, so life is Good! If your life isn’t good….you better have a good reason for it!

For the next few weeks I have day trip visits to check my blood and vitals and at some point I get scanned again to see if there was any progress. I don’t know what the answer is if there is not progress but the Doc said we should know in 6-8 weeks. Makes it a little hard to schedule stuff.

Once again, thank you for the Prayers and Spiritual Energy! Bob