Of course, we left enough time to grab some StarBs on our way to the cancer center for the Daratumumab infusion. The closest ones were all in grocery stores. A Kroger’s was right in the way, and they surprisingly had the order-ahead option, so I made the order ran in and grabbed it. The cancer center is on the newer McNair campus of St. Luke’s which primarily provides outpatient services. It’s south of the hospital and not far from the apartment.
Being a newer center, there is constriction everywhere. This seems to be where the medical center is expanding, too. All the old original hospitals are landlocked, and there is no room to grow except up. St. Luke’s had huge double towers where we used to see some doctors, and at the Baylor Clinic, where we saw Dr. Nair before we migrated to the heart failure clinic. That was across the street from the towers. He actually pushed Amanda in a wheelchair from the clinic to the hospital for an admission one time. All of that has been moved to another campus that isn’t within walking distance. I imagine it’s a pain for the doctors to be back and forth between the hospital and clinic now. Before, they could easily swing over from the clinic to see patients. At least the heart failure clinic is still connected to the hospital. One of the pains is there aren’t all the food options.
The Parking was a bit confusing and Amanda never received any arrival instructions. The center was on the opposite side of where we’d been before, too far to park in the garage we were using. After looping around the entire campus, we finally found the patient parking and wound our way up many floors before finding a suitable handicapped spot to get Amanda out. It’s surprising how the newly built place isn’t more handicap-friendly. Most doors don’t auto-open, and the counters at the reception desks are high. Probably 50% of the patients I saw were in hospital-provided wheelchairs or walkers/chairs of their own.
While waiting, Amanda called the coordinator to see about getting more of the Furoscix; as of today, we are out. I don’t know why it is so hard for them to get the prescription called in. We ran into this last time. I’m a little worried if we don’t get any today. She will need some adjustments in meds; she was up another pound today. Without the Furoscix, she will need something IV to keep up. Amanda didn’t leave a message, but the coordinator called back to check on her since we called the on-call coordinator over the weekend. She was going to work on getting the prescription fixed. She said that it was sent in over the pharmacy’s portal, and she faxed it in last week, too.
Getting a pain specialist seems to be a pain! Amanda called to set up an appointment, but both of the ones she was referred to, one from the in-patient coordinator and another from the hospitalist, only took spine and neck pain patients, not general pain. She asked the receptionist if they had another doctor who would see her. They did, but the appointment they booked for her was in June, the earliest they had! So, we’re adding that to the list of things to talk to Dr. Nair about at the clinic visit tomorrow.
About an hour after our slotted time for the infusion, we were finally taken back to the smallest room ever. Even if I had a fancy recliner to sit in as Amanda did, I wouldn’t have been able to recline because my feet would have touched the wall on one side and my head on the other! Amanda was pretty happy with her recliner because it was heated, what we call “hot butt.” They got the pre-meds ready, the same as for the Soliris: Benadryl, Tylenol, Zoran for nausea, and steroids for low blood pressure. I was questioning the nurse about the pre-meds and the new IV pumps. After talking for a while, she asked, “Are you a nurse?” I guess I am, in a way, Amanda’s nurse at least!
By the time Amanda got the actual medication, it was two hours after our appointment time, and we showed up an hour early for the lab draw. We were told it would be three hours total for the infusion. When the infusion started, I asked how much an hour they were going to run. It was 50ml an hour on a 1000ml bag, so I obviously had questions! It would run that way for an hour, then bump up 50ml every hour until done, maxing at 300ml an hour. I did the math quickly, about five and a half hours. The medicine was about 100ml but in a bolus bag of fluid. With Amanda already retaining fluid, I was worried about that big of a bag of fluid, too. I was praying against another hospital admission, but I didn’t have a good feeling about the extra fluid and then the possilbe lack of the Furoscix on top of the six pounds she’d already gained
I recognized a guy in the cubicle room next to us. I’d seen him in the hospital, not even on the transplant floor, just in passing and on the elevator. He was older with perfectly swooped-back hair, which reminded me of my father. Dad always had his hair fixed perfectly! He was with his wife or mother, and I wasn’t sure which; she looked like she was run ragged from the battle she was fighting with cancer. A nurse was talking with him in the hall; there were no doors, and he was loud, so I was privy to the entire conversation. They were rescheduling and could only make the appointment for his significant other on Wednesday, the same day he had a glaucoma eye surgery. I could see him thinking, and he quickly said make it; I’ll cancel my procedure. I could feel the caregiver pains; it is hard to take care of yourself when it comes to caretaking for someone else. I saw this in my father, and it took him early since he passed on all his symptoms because he was taking care of my mother during her cancer treatments. All along, he had cancer, too. I try to take care of myself, but I have put off too many things to even count over the years; it just comes with the territory.
We needed to schedule the Furoscix delivery but weren’t exactly sure when we’d be home. Amanda took the only slot available, which was between 6 and 10 p.m. She would get it late, but it’s better than never. I hoped we’d be home for the delivery since it was 14 of the infusers, and they weren’t in a box last time, but just a bit bag open on the top. I didn’t like the idea of nearly $14k in meds just sitting at our front door! So we opted for a signature required delivery.
We weren’t planning for the infusion to run two hours late plus running for over 5 hours, so we did not come prepared. I needed a charger for my Mac, we needed lunch, and I needed to let Tank out. So, I quickly ran home to take care of all of that. Amanda wanted a drink, so I grabbed her a refresher and then picked up a couple of falafel wraps at a Mediterranean place. It was on the other side of the cancer center, not far away. It was authentic and connected to a corporate housing office and a gas station, neither of which had English writing on the outside, Arabic, I assumed. It was good, and we both enjoyed lunch even though Amanda felt pretty crummy from the new “mab.”
The Daratumumab was similar to the Soliris, making her feel bad and dropping her blood pressure. Amanda had a few phone calls while we were there. The coordinator called and got on top of a few other things we needed, and then Vanderbilt called. They wanted to know how things were going and called Amanda to say they hadn’t heard anything about the direct transfer, which was understandable since they weren’t inpatient anymore. Amanda explained we’d like to come up to see what they say and go through the approval process to have it in our back pocket. We’re playing the long game right now, and I want to have all our ducks in a row with Vanderbilt as the Ace up our sleeve if needed. As I’ve mentioned before, there are a lot of ducks with our home getting sold we need to line up first before we could swing Vanderbilt.
We had the Furoscix delivery scheduled and thought we’d be home by the earliest they promised it. We got a notification the driver was on his way and would be at the apartment early. Amanda wasn’t even done with the prolonged infusion, so I called the number they had listed for the driver to see if I could get him rerouted to the cancer center. I called multiple times but got no answer. Finally, as we were getting ready to leave, the Ring went off, and he was there 15 minutes early. I told him we would be a bit, but he couldn’t wait and wouldn’t deliver to the center. All he would tell me was it was up to the pharmacy multiple times. So I called the pharmacy, but they weren’t very helpful either. Saying they’d have to reschedule till tomorrow. I explained to them that this would likely put Amanda back in the hospital if she didn’t get one to take today. I asked if I could go and pick some up; I could have, but they, of course, were closed. It was frustrating that it didn’t get called in on time. The coordinator said it was a pain trying to get them to accept the prescription. Also, it became our fault when the driver showed up early and then wouldn’t wait. I was already worried about fluid retention, and now this most definitely can’t help either.
We got home, and I went to work on a shoe rack for Amanda’s closet that had arrived. It was an ultra-cheap Chinese put-together rack. It even came with a wooden mallet and gloves, so you wouldn’t cut yourself. I did cut myself and have the scar to prove it on another one I assembled last week for my closet, but I still didn’t wear the gloves this time! It fits perfectly where we put it. We ate some leftover Chinese food for dinner; maybe we were inspired to eat that by our overseas shipped shoe rack! I ran to a nearby China Stix restaurant to get soup and egg rolls to go with our leftovers first. I was going to grab some other prescriptions that were ready, but they were closed as well; we just weren’t having any luck with pharmacies today. After that, we put together another little shelf for Amanda’s closet to get it all rigged out for her. This is so different from the other transplant because we only needed time for Amanda afterward and not before. She wasn’t very active then either, plus it was covid, so we didn’t get out a lot. Now, though she is up for a little more, and we will likely live here a while. We still have over three months before she can even be listed, plus the waiting to get a heart. So, needless to say, I feel we should make the apartment both as livable as we can and as homey as possible for our current situation.
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