The 12 O'clock Appointment

Today marks 231 days post-transplant. In about 134 days, I will complete the year of “babysitting” the doctor described when I began this stem cell transplant journey. He (my doctor) told me at the beginning of my transplant that they were going to “beat me up”, then they would “babysit me”. Well, I’ve been “beat up” plenty, and am now a little over 200 days into “babysitting.”

That is not to say at the end of the year that I am finished with my visits to Birmingham. I think that process concludes after two years, but the medication tapering is a great deal more significant after one year, if I understand correctly.

To say I’m grateful for the care I receive is a colossal understatement. Brian and I drive to the clinic once a month now. We’ve graduated from going once a week, to once every two weeks to now, only going once a month.

The trip and the process is quite familiar now. When we reach the clinic and pull into the parking deck, we greet the attendant and he greets us. When we enter the clinic from the parking deck, we greet the lady at the information kiosk and she greets us.

When the 5^th floor elevator doors open, we follow the signs to the Bone Marrow Transplant Clinic. We go through the door and Brian heads to the left side of the waiting room to find us a seat as I go to the check-in line. “I can help the next person”, one of the three personnel sitting behind the counter at their computer, says, and I approach.

 We greet each other, no matter which person calls me, because we know all the members of the check-in staff. I comment on their new glasses or pretty nails and they always have a kind word and a nice smile for me and every client they see that day.

Once I get my “patient tracker” I attach it to my vest or sweater and go sit by Brian until someone from the lab calls my name. When I head back for my blood draw, again, I know each darling lady who draws my blood and we chat and laugh as they work. I count how many empty vials she pulls from her supply container. Sometimes it is four vials, sometimes six, and occasionally twelve. I comment, “Only four vials today? It’s a good day.” She smiles and applies the tourniquet. When she wraps my arm, I head back to the waiting room. I have never met an unkind person in the lab.  

When I exit, Brian picks up our bags and we head to another side of the waiting room and take a seat. By now, we know several of the faces of the families who are on our same schedule and we are used to seeing each other, so we smile and say hello. When our lady friend who is going through treatment is there, she will come and sit near us. We haven’t seen her in the last few visits though. Prayerfully she is well. Then there is the lovely couple who are also on our schedule and we will find a seat near them if they are there, and catch up on each other until one of us is called into our doctor’s office.

It is easy to tell which person in the family is getting treatment because they are the one wearing the “tracker”. The tracker looks like a small, round, green badge with a clip on one end.

There are many of us there “of a certain age” with trackers attached to our clothing, but it always strikes me when we see a young couple and one of them has one of these clipped to their shirt. I wonder how they are feeling. I want to talk to them and ask how they are, but most people in the waiting room have their heads down, especially young couples, like they don’t want to talk to anyone. We see a lot of that, and we often pray for the burden they are carrying, one that we will never know about. I want to speak to them, but often, they are across the waiting room, so I pray for the one with the tracker on, and the spouse who is going through this with them.

“Schneider!”, we hear as our friend opens the door to our part of the clinic. We get up and smile. We know her. We greet her as we enter, I lay my purse on the counter and Brian holds our bags. She and I chat as I walk to the scales so she can record my weight. “No, I haven’t fallen, and no, I don’t have a port,” I say, knowing the questions she needs to ask. She laughs and we walk back; I pick up my purse, and we follow her to our room.

We continue chatting as she takes my blood pressure and heart rate. “So where are your glasses?” I ask. We’ve never seen her without her glasses. “Oh, they’re at my workspace,” she replies. “How’s your back,” we ask if it is the other person checking us in. We know them all and they know us.

She leaves the room and the nurse enters. Once again, we greet each other like old friends. Once they have asked the necessary questions, we get to visit for a moment and we catch up on their family member’s surgery and their life.

At one visit, after the Nurse Practitioner was concluding her visit, she asked if we had any questions. I said, “Yes! Now that we have all that important information completed, I need to ask you a really important question.” Her eyes opened wide and said, “OK, what is it?” I said, “Where did you get your shoes?” She almost slid out of her chair laughing. That was fun. She told me where she got them. Later that week, we visited that store. No shoes like hers there. Sometimes life is very sad.

She exits the room and the next person to come in is the doctor. The head of the BMT (Bone Marrow Transplant Clinic). “Helloooo!” He greets us with a big smile and a pleasant greeting. “How are you?” he asks. His favorite response is, “boring!” That is what he says our goal is during these days of healing. He says he wants to keep things boring.

He is a very engaging doctor with a lovely sense of humor. He tells me he wants me to be fat and to stay out of the sun and he laughs knowing that is not an easy thing to hear. The “fat” part is the steroids “babysitting” me, and the out of the sun part assures no graft-versus-host disease (GVHD). Sunlight can trigger that, so I am to avoid it at all costs, and I do my best so I can remain boring.

He is still getting used to my sense of humor. He gave me a good report once, and I said something that would be a normal thing for me to say. I said, “Thank you for the good news, I love you, ( spoken the way you tell a friend you love them when leaving a lunch together, “love you!”). Well! ! I don’t think a patient ever said I love you to him. He raised his eyes and looked straight at Brian, surprised. I cracked up. We both laughed about that on the way home. It’s a southern thing, I guess.

Our visits with the doctor are a combination of anxiety and relief. We wait anxiously for him to check my bloodwork and give me an update on how I am doing from his eyes. He takes all the time I need and when he answers my questions, his answers are thorough and often over my head. When he begins to talk about what is actually happening inside me, it is amazing to hear him. You can tell he loves his work. I would love to attend a lecture of his that goes into the details of transplants. He is, as Brian calls it, a “hundred-pound brain guy”.

When the visit is complete and medication adjustments are made, we pick up our things, and head out of the office. We stop at the checkout lady’s office and she greets us by name (and often reminds me to remove my patient tracker, since I often walk right by the box where you deposit them when you leave). She gives us our parking pass and tells us to have a blessed day. We retrace our steps to the car, head out of the parking deck, stop at the parking checkout booth and hand the lady, who we know, with the blonde highlights, our pass to leave. We wish each other a blessed day and begin our trip home.

So, on this day 231, post-transplant, I can report I am boring. I am tracking right along with the healing process. I’ll spare you some of the medication effects, but it has been a joy (not!) to have to buy a couple of articles of clothing a size larger because you can’t get into your clothes (thank you steroids), or a pair of “wide” shoes so you have shoes for your swollen feet.

My hair has been gone for seven months and is coming back in like crazy, so I am grateful to finally touch my head and feel fuzz and not bare skin. Those are just a couple of the realities of these babysitting days, but I’ll take them.

I have surrendered to the externals, like wearing a hat everywhere. They were huge in the beginning and now are part of life as it is for now. Life! That is the main thing. I greet every single morning telling the Lord thank you for the gift of another day. Another boring day.

And that’s the update as of day 231.