Each early morning visit to MD Anderson reminds me of setting up a bunch of dominos on their short edges in interesting configurations. The hope is after touching the first one, the dominos will all fall, one right after the other, so we can hurry and get back on the HOV toward home before the sun sets. We still haven’t gotten used to the fact … it is probably not ever going to happen. It is why we take two cars for infusion day. That way I can be sure to get home in time for Mimi’s bus.
Maintenance infusion number three happened on August 11, and started with the usual bloodletting. Step two is wait to chat with clinical trial nurse to go over symptoms and blood work. We have always been told the wait is two hours to get back test results. So of course we left the 7th floor and headed down to Cool Beans for coffee and hot chocolate. We found a quiet corner table and Rick set up his phone with our favorite playlist for some chill time.
We headed back to the 7th floor only to find out they were looking for us an hour before to get started chatting early with the clinical trial lady. So much for speeding things up on our part. We won’t do that again. Good news … Rick’s lipase number continues to improve. He is back at the top of the normal range. We chatted with the PA, the lovely Simi, and Dr. Campbell paid us a visit. Turns out he read my blog. It seems I remind him of his mother, who is also a quilter and, I think, teaches English Literature. Who knew? Step three … we headed to the eighth floor where the infusion would happen. We check-in and then go to lunch before heading back up to wait some more. This part of the day is always where Rick and I turn into grumpy bugs because of all the waiting … sometimes three or four hours just to get sent back into the room for the infusion. It is painful. I know lots happens behind the scene until the infusion finally goes drip, drip, drip for an hour. Then wait another hour afterward, for side effects, and finally head for home … in time for dinner.
Note to self … always go to infusion therapy to get IV started. We forgot this time. Some of the ladies in charge of the actual infusions don’t do that part very well. It is painful to watch. I can imagine how Rick felt.
Fast forward to yesterday and maintenance infusion number four! It was pretty much rinse, wash and a repeat of the last one. Only this time MD Anderson had installed IPads on the wall near the check-in desks. The concept sounded like it might work, but I think they need to tweak that one a little. After IPad check-in, you sit down and wait to be called on your cellphone to head toward the check-in desk to get your mandatory MDA “wristband.” The IPad also forgot to inform the MDA peeps that only do “vital signs” that Rick was in the building.
Bottom line … this time we didn’t leave the 7th floor for Cool Beans. Well … actually I left and came back with coffee and hot chocolate. Rick’s lipase is still dropping. It is obvious now the high level had something to do with his kidney removal surgery. Rick had his IV put in by Infusion Therapy peeps. He didn’t get a good one. She stabbed him twice before Rick requested someone else. Then finally the infusion after a long four-hour wait. Rick made it home again in time for dinner.
To mark our continued progress, we are now collecting the wrist bands we cut off at the end of infusion day to visualize how far we have come until the trial finishes in March of 2018. I wish we had started this at the beginning. We would probably have 40 wrist bands by now with all the testing and other doctor visits.
In September, we have two more maintenance infusions, MRI and CT scans. It will be interesting to see if things continue to shrink.
So the dominos … they continue to fall. Maybe not always in the orderly way we want them to. Lord, I think we need to add patience to our list. We continue to feel so blessed and thankful for Rick’s return to good health.