Wednesday, October 07, 2015

Round and Round We Go

Philippians 2:13  For it is God who works in you, both to will and to work for his good pleasure.

God has prepared us well to handle leukemia...I honestly believe that. I really think Ruby's diagnosis at birth helped us, or at least me, be able to take some of this 'big' stuff in stride. And what a blessing that is, because even though I feel prepared to face it, I am aware of how 'big' it is.

But, oh how He still has much work to do on me when it comes to little stuff. Last week's curve ball with the schedule change-up and today's 'little' inconveniences definitely ruffles my feathers more than I'd care to admit. (Truth be told, it sends me into a tailspin full of angry and entitled feelings.)

Let me just start by saying that I know sometimes it is necessary for Ruby to just sit in one area and deal with the treatments we are following. During the first round we did it for four days straight! For me, it's knowing that we have to do that at certain points that gives me no patience for doing it at other times for no reason at all. Kinda like the change up of her schedule for this round of chemo; I know fevers and infections are going to delay our planned schedule, so I really need any sense of normalcy I can get. It doesn't help that I am a creature of habit also, and I like to know what is happening. You could say I like to be in control (actually not true), but I do know that when things are a bit out of control, I desperately grab onto anything that is 'normal' or routine like it's an anchor of stability. Things like these unwarranted curve balls rock my boat.
We were told to arrive at the clinic at 8AM this morning. This is the same call time we got last week, which turned into: arrive at 8AM, have a bone marrow aspiration at 9AM, recover until 10AM and then sit in a room and 'hang out' until chemo starts at 3PM (which ended up being 5PM). When Ruby's doc called yesterday to give me her blood test results (all good and right where they should be, which is a blessing!!), I asked about this week's call time. Specifically if it would follow the same 'schedule' as last week. She assured me that it was a fluke and she would personally check to make sure the chemo was ready first thing.

Unfortunately, I forgot that Ruby's care is a team effort, which is a good thing, but in this instance, got us into the same pickle. We arrived at 8AM and got called back around 8:30. We met with the nurses to have blood taken and Ruby's dressing changed, and then we met with the doctor (same one) to confirm the schedule for the day. We were soon after ushered into the clinic to start chemo. Soon after the nurse informed us that Ruby's schedule for this chemo couldn't start until 3PM because of the flow it needed to have with the infusion and shot. I totally get that. Unfortunately again, we were told we needed to 'hang out' (I really don't like that phrase anymore) until then. In a small area. With a 2-year-old.

Because Lehr could tell I was ready to pop and is so much better with keeping his cool and having a rational conversation in situations such as these, he thanked the nurse and got her to leave. Shortly after the doctor came back over and apologized and gave a good reason why she didn't know about the schedule. But again, we'd have to 'hang out'. Lehr pressed her for a reason why (because if there is one, we are open to it), but we didn't seem to be getting anywhere. He asked if we could please just move around the hospital for the next 6+ hours because Ruby is TWO. She went away and came back with good news that we could. (Not sure my stubborn streak would have kept me from leaving anyway, but I am a rule follower, so I was glad we were 'legal' in our extended leash.)

Just after three we started the chemo and about an hour later we were admitted into Ruby's room on the AFLAC unit. Ruby ate dinner, played in her new (old) room, and she and I went to the gardens for about an hour before bed. She has to have her eye drops every six hours again which means waking her up twice tonight, and she had to have one oral med before bedtime. Fortunately she did OK with that; she fought the nurse and I, but kept 99% of it down.

For now, Ruby and I are settled into the same room (a great one, in my opinion!) we had for the first big stay, and I scored us a sweet wagon with the best handling available. Two big wins, so today ends with a smile.

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