Author: Hazel Becker

When I left home for a long walk with Chewey this morning I didn’t think about this benefit of walking outside instead of going to the gym: I would return down Broad Branch Rd. and walk past Neysa’s garden.

Had I planned a photo shoot I would have taken my camera. Instead, I used my phone – in bright sunshine – which means I click some photos and then go home to look at them and see what I got. I know some people can be successful photographers that way – but not me! Most of them turned out blurry like this:

As you can see from the garden shot above, one prominent flower today was the Tradescantia, commonly known as Spiderwort. In the bright light, to the naked eye, the color appears to be pink. In reality the flowers are this deep purple.

One of my favorites is this beauty, whose name escapes me right now (perhaps because I don’t grow it, and maybe that means I should).

This bright yellow flower, commonly known as Sun Burst, also grows in my garden in great abundance – in Neysa’s garden, I only saw this one.

That’s about it for the photos I’ll admit to taking, and it doesn’t do Neysa’s garden justice.
I was also reminded of what I missed this year, not going by more often – the gorgeous flag iris were done and gone, and the peonies were spent. I used to visit much more regularly when Morris was there. I’ll have to make a point of it – what pleasant thoughts of Neysa, what a great way to start the day!
 

Here’s a photo roll from my first walk in New Orleans. I walked down Tchoupitoulos from the Warehouse District to WalMart. I’m told it was about a mile and a quarter – but my cellphone app said I walked more than 2 1/2 miles so I must have wandered a bit.

There was lots of blight along the way. Sometimes it was sprouting:

And recycled planters on the fence outside:

Then, hidden behind fences where you weren’t invited in:

There’s lots of street art scattered around town:

And of course, tourist traps:

Walked back deeper into the Garden District, among pretty houses like this:

And a truck parking lot with oddities like this:

Poor Robert, meanwhile, was stuck in meetings … Of course taking time to be on a panel at the National Freedom of Information Coalition meeting meant we got his trip subsidized, so I guess it was worth it.

We walked together Sunday and Monday … I’ll post more photos of those walks later.
 
 

I intended to post a string of photo blogs each day of our New Orleans trip, so I brought my little Canon point-and-shoot and set out walking on Saturday while Robert was in meetings of the National Freedom-of-Information Coalition. Since I forgot my card reader and have no way to transfer photos to the computer, I can’t show you some of the funky street scenes I saw on my walk to Walmart to buy a cheap water bottle. (Of all the things I could have forgotten, this was the easiest to replace … And we can blame it not on my aging brain but on our early departure on an 8:30 a.m. airplane …)
Today it was the camera I forgot! I shot some photos with my cell phone during  our  3 1/2 hour walk through the French Quarter and the Treme – not great quality, but here’s some of what we saw.

We started with beignets and cafe au lait at Cafe du Monde. Not our typical Sunday brunch – and afterwards we felt the need to walk off all the sugar calories. We sat in Jackson Square park for a while reading the Sunday Post on our iPads before heading north on St. Peter. We’ve been to NOLA enough that we aren’t agog at everything we see in the quarter, but it felt nice to be here. The sun hadn’t burned off the haze yet so it wasn’t too hot. 
Soon we found our way to Louis Armstrong Park.

If you’ve watched the HBO series Treme you’ve probably seen it on TV but it’s even more impressive in person.

In addition to wonderful statues of Armstrong and Mahalia Jackson, after whom the music hall is named, it’s home to beautiful plantings, sculptures, trees that looked like locusts but had root systems similar to mangroves, mallards (no geese, that we saw!), and several performance venues. Sometimes it’s hard to tell from afar whether what you see is a tree root or a duck …

It’s noted for a beautiful arched entrance, an impressive bridge, and Congo Square, where slaves congregated before the Civil War. I didn’t manage to get any photos of any of those things …
Across from the northwest edge of the park we found a visitors’ center and got a better map, one that included the Treme – which we were already in, though we didn’t know it! We walked through St. Louis Cemetery, where two bona fide tour guides were pointing out crypts of notables and a sham (a la Davis) was telling people about voodoo and hoodoo. It was interesting to see the mixture of burial plots in the cemetery, some very old markers (including Marie Laveua) interspersed with new, modern structures (one shaped like a pyramid) and some family plots that have been in use through parts of three centuries. 
The Treme itself looks not-too-different from other old NOLA neighborhoods. 

The major difference is that there are fewer grand homes and more properties in need of TLC. Some are adorned with beads and other markings that you tend to see in New Orleans much more than other cities.
As we headed back across the Quarter, we came across a big group on bicycles getting ready for Bike Easy. Before long they were following us down Royal, accompanied by a brass band – typical of New Orleans.

By now I was really hungry – and a little grumpy, can you believe it? We found a place called Green Goddess in Exchange Alley, across from the Tobacco Exchange. Robert had a sandwich filled with crawfish etouffe. I had sweet potato biscuits smothered in mushroom gravy, topped with poached eggs and with cheese grits on the side. 
It was 3 by the time we were back at our hotel, time for a short snooze and lots of reading – and only a little while for blogging. No time to figure out how to get the damned photos out of my camera so I can show you some of the street scenes I shot yesterday.
I’ll leave you, though, with this one from Friday night. It’s so typical of New Orleans, and something you find primarily in areas of other cities where we would not likely be walking down the street.

Dr. Lipson called as we were checking into the hotel this afternoon to say that he had two radiologists that he trusts look at all the scans and they didn’t find anything to worry about. That means Robert has “no evidence of disease” and I’ll dance with N.E.D. at Sandy’s wedding on Sunday.
The delay was as benign as I thought. The second CT scan was done last Thursday at Sibley instead of Johns Hopkins Hospital, where Dr. Lipson spends most of his days. He goes to Sibley on Thursday afternoons, and while he was there yesterday he got a CD with the pictures on it. This morning he had it loaded at JHH. So, it took a week because the two hospitals (both owned by Johns Hopkins) don’t have computer systems that talk with each other.
We had a long day in the car. The major problems started when we got to Staten Island. Then we crawled across Brooklyn on the way to LaGuardia to pick up Allis on and Gabriel. We crawled again, most of the way to Roslyn.
Now we’re going for a walk. Hope everyone enjoys your weekend – call our cells if you need to talk about something.

If you’re one of several people who have sent cryptic messages asking for a report on the scans Robert had done last week, please know that you are not alone. We aren’t worried about the delay, and we’ll let you know when there’s something to say.

Perhaps if all had gone as planned at Hopkins last Tuesday we would have the reports by now. However, Hopkins did the wrong CT scan – gastrointestinal, abdomen, and lower body instead of gastrointestinal, thoracic, and neck. That’s why we had to go to Sibley on Thursday for them to scan Robert’s chest and neck. So, add two days …
Next delay: we know our oncologist, Evan Lipson, was to be traveling Friday, and we aren’t sure when he was/is expected to return. He will want to review the pictures himself, no matter what the radiologists’ reports say. Let’s give the man a chance to do his job …
And what about the others in the “supply chain”? The radiologist’s report is probably dictated or scribbled, and that has to be transcribed – very possibly by someone on another continent. The radiologist probably has to read the transcription to make sure it’s accurate before signing off on the report. Then it has to go to Medical Records, get into the computer, get catalogued, whatever … and any one of those steps could have an unexpected delay. This is the state of our medical system today …
Now, for the substance. I wouldn’t be surprised if it takes longer for us to hear about the results each time another scan is added to the mix because there are more pictures to compare. These are not duplicate prints of the same shot – mostly they are looking at nodes and organs that might move around and/or change shape from day to day. The pictures were taken at different times and will have shadows and variations that need to be examined and analyzed. It’s possible that a dot that wasn’t troublesome in October is still there, maybe a little darker … or maybe they need to look for something they saw on an earlier scan that isn’t there now. One doctor will see something and ask someone else …
Robert’s “what will be will be” attitude is rubbing off on me. That’s a good thing. I am not reading doom and gloom into the delay. You shouldn’t either.

Before we left Johns Hopkins Hospital this morning I thought we might actually have some results to report today – but alas, it was not to be. The fellow who made up the CD of Robert’s brain MRI said that if we waited about 10 minutes, he could print out the report for us. Our wait was a lot longer – and then he came and said the doctor hadn’t signed off on the report yet. It was lunch time, and he didn’t want to keep us waiting.
Bummer! But even so, I came home without the anxiety I’ve been carrying around – despite the screw-ups that make me want to take back some of the good things I’ve said before about Hopkins.

At the outset, let me say that the people we dealt with today (including the guy who tried to get us the report) were wonderful, and we still haven’t run across an apathetic soul there. But the inefficiencies we came across this time, coupled with some questionable billing practices (see below), knock the place down a star in my book.
I’m not sure what happened with the scheduling – but Dr. Lipson and our study nurse, Susan Sartorius-Mergenthaler, attribute some of the problem to a new computer system that will be great when they get it working right. Our troubles started when Robert got a call yesterday reminding him that he had an appointment today at 6:30 a.m. Now, that’s not what Susan had told us! We got a little relief when the person from Nuclear Medicine called a little while later to say the appointment was at 7 and we needed to get there “a little beforehand.” We were up early and on our way by 5:45, arriving just on time. I’m very glad we didn’t arrive in Nuclear Medicine at 6:30 – there would have been no one there, and at least one of us would have been pretty grumpy about that … (Note to Hopkins scheduling folks: When people have appointments very early in the morning, don’t tell them they need to arrive ½ hour before the department doing the test opens for business. Some people are punctual!)
The brain MRI was first, and all went smoothly there. It took a little longer than we thought it would, but even so, we were able to make our way back over to the Weinberg Cancer Center by 8 for the CT scan, which was scheduled for 8:10. Robert drank two cups of Crystal Lite laced with a contrast dye (better known as Hopkins Cool-Aid) and then went with the technician for the test. After it was done we headed for the area where blood is drawn and appointments with the oncologists take place. All was well, we were moving smoothly through the system as usual, and it looked like we could be home by noon.
That would have made a good story if the CT scanners had done the right test – but for some reason, they scanned the GI tract and lower body instead of the upper body. Dr. Lipson called his assistant at Sibley (one of two D.C.-area hospitals Hopkins has swallowed up of late) and arranged for the CT scan of Robert’s thorax to take place there on Thursday. We couldn’t schedule it for tomorrow, as Dr. Lipson asked – Robert goes to see his dermatologist in the morning, has a conference call at 2 p.m., and then we head back to Baltimore for dinner with our friend Eydie. We are absolutely certain our priorities are right! If you know Eydie, you know why …
If Dr. Lipson had found anything amiss in his examination of Robert today, that might have come out differently – but he didn’t, and that’s where the “no news is good news” part comes in. In June, we will mark the one-year anniversary of Robert’s wide local excision. We made it past the six-month mark without a recurrence, and Dr. Lipson reiterated today that that was the first hurdle. If we make it past one year, that will be worth celebrating! With each milestone, the chance of recurrence is smaller. We’ll take them as they come, and I’m sure the world will look brighter with each one.
That doesn’t mean we let down our guard. Robert has his quarterly skin check tomorrow, and then we will have another appointment with Dr. Lipson (including scans) at Sibley in August. Robert feels fine, has plenty of energy, and shows no symptoms that cause Dr. Lipson to be concerned. So, I’m pretty positive about the whole thing.
Billing woes
In a February post about the health care finance system, I mentioned our positive experiences with Johns Hopkins and commended their “consolidated billing” system. Perhaps I was too quick to praise … Since then I’ve had occasion to rethink that assessment.
Now I understand that Johns Hopkins Hospital assigns a new account number for every encounter a patient has there. This cannot be the best system!! Those bills come separately, and if you put the wrong account number on the check it might not get credited properly. That makes it difficult to pay several small bills with one check, particularly when using a bank’s automatic billpay system that limits the number of characters you can put in the memo field.
The consolidated billing system I wrote about is for the Johns Hopkins Clinical Practice Associates, which has its own inefficiencies. I’ve discovered, for example, that copays charged on the date of the visit don’t necessarily get credited against the right services, or even to the right account. It is possible to get it all straightened out by talking with someone on the phone … but honestly, that should not be necessary. Patients should not need to create a spreadsheet to keep track of what’s been paid, by whom, and when in order to know what’s still owed when a bill comes in marked “delinquent.”
When I called to find out what was going on, the nice billing clerk I spoke with said she would open an investigation and send me a letter in a few weeks with the results. When the letter came, it only dealt with one of the three charges I had called about. I called again, and once again the clerk I spoke with was very pleasant to deal with. This time, I asked about each charge separately and was told no balance was owed on any of them.
I’ve gotten to be much more easy-going about these bills – I no longer take them so seriously. But it shouldn’t be an issue. Someone needs to shake whoever’s responsible, or smack ‘em upside the head. People who are dealing with health issues have enough to worry about. Sending threatening notices (even if it’s just a memo on the bill saying your account is “seriously overdue”) can’t possibly make it better.
Enough, now! I’ll post again when N.E.D. takes me to the dance – or before, if I have something else to say!