First CT Scan After Progression Showed in March

Tina2

For the past few years, I've had my monitoring CTs done at a local facility that my oncologist had recommended. Last time the tech stuck me seven times (both arms, both hands) trying to inject the contrast. He finally called in the radiologist to help. I joked and pooh-poohed the pain, but was not happy. After the scan, as he was pulling shaky old cancerous me up off the table, the tech asked me how he could get into doing narration and commercials.

Aren't people amazing?

So tomorrow I'm returning to the hospital where I've had many bone scans and PETs over the years, and had my last PET in March. They've sent me Covid screens via email and text. I was told to pull into a driveway near the building tomorrow, call a special number and someone will bring the barium out to my car. I tried to ascertain when I could enter the building, but the receptionist kept saying "social distancing," giving me no clue as to when I could go into the main building and get to a restroom, which I know I'm going to need.

I hope to get a better answer tomorrow when the carhop brings the barium out to me. Wonder if I can get a burger, too?

Sometimes ya just gotta laugh.

Tina

BevJen

Hi, Tina,

I'm guessing that you're going to a Hopkins-owned facility tomorrow -- bc I think I recall that you may be in the DC/Baltimore area.

They are REALLY into this car stuff -- I've done this for 3 months at least. The first month, they said: drive up into the circle, someone will come out to do your labs and your faslodex shots. Okay. I puzzled about that for a bit, but when I got there, they did have someone come out who escorted me in for the blood draw and the faslodex (thank God -- I was seriously puzzling about how they were going to stick me in the rear with me in the car and them outside.) The next time, I had to have a scan as well. They said to pull into the circle, then they came out and I went in for blood pull and faslodex. Then they told me I had to park bc I had to go upstairs for the scan. Well, yeah. Anyway, it all worked out. You just have to ask a lot of questions when you get there. All in all, it hasn't been that bad to do it this way.

I will say that the nurse doing the injections told me that she DID have to kind of crawl into the car to inject some man with some drug bc he couldn't really walk in and out. Now THAT must have been interesting.

Tina2

Thanks, BevJen. You're right about my going to a JHU affiliate.

I get my Faslodex at the onc's office, so I was spared wondering how administration was going to occur in the driveway.

It could give a whole new meaning to the term "moon roof!"

Tina

Zillsnot4me

moon roof! That’s too funny. Be sure and ask for fries with that.

Tina2

Update on getting July 14 scan: a comedy of covid-related errors which I tell here because I have a feeling some of you, particularly BevJen, may be amused or able to relate.

Arrived in aforementioned hospital circular driveway in near 100-degree heat, called number I was given to bring staff member out with barium. Made ten calls, no answer. Put blinkers on, entered hospital Bulding A to find the information temp knew nothing. Told her I was there for a scan. Which imaging department, she asked. I replied that I had only been to one in many years and it was in Building B.

She called Building A Imaging and got no answer. Then she called Building B where they did not have me listed for a scan. By this time I was starting to lose it (heat, frustration,concerns about time,) got back into my car, parked it in a lot, and walked what felt a million miles to Building B, where I was told I was not to have the scan there, but rather back in Building A. Fortunately a kind nurse/rad tech came out to the desk with a bottle of barium and offered to walk me back to Building A while I sipped it. I felt a bit foolish, but consented because I needed someone to vent to. What a lovely person.

I reported in at Building A, met the rad tech and learned that the department was understaffed by one clearly critical person's unanticipated absence. No one's fault, just poor communication. Scan proceeded without incident. Gave CD from previous outside facility to woman at information desk as I was leaving, only to be told she did not have the software to upload it into the system and I would have to take it back to the desk at Building B, which I did, increasing shortness of of breath and all.

Getting one 10-minute scan took nearly an entire afternoon, excluding travel.

Upshot: Ibrance and Faslodex don't appear to be stopping the progression in my lungs. At my 7/23 appointment, my doctor asked me to keep a diary of how I feel every day because I guess "fatigued" isn't specific enough for him.

Rimshot: The hospital radiologist never used the most recent scan that I had brought for comparison.

Tina

moth

Tina2, Sorry to hear about the lung met progression. That sucks. And the total screwup at the hospital and making you run around like that is crazy.

BevJen

Tina,

That was some story. I told you they had their Covid precautions down (did you have to download the little Green/Go sign before showing up?) but I wasn't thinking about the construction ramifications at your hospital and how much they could screw things up. I didn't even know they HAD scanning facilities in the new building -- I always went to the old building. So sorry for your trouble.

And, by the way, if you want to avoid SOME of the hassle of the newly expanded hospital, you can always get your scans in Bethesda at the Outpatient Building. Of course, there are also some issues there -- yesterday I went for an MRI of my entire spine, and got there. Was told to call from parking lot. Called. Told me to call back in 15 minutes. Called back. Told me to call back or leave and come back in an hour -- I totally lost it. Told them I would literally not make it home and back in that time (a little white lie) so they eventually let me come upstairs and wait in the AC. There was NO ONE in the waiting room but me and the two registrar people, and it's a HUGE waiting room. So, like you, what should have taken an hour or two was WAY drawn out.

So sorry about the progression. That sucks. Have you had a biopsy of your progressing mets and a Foundation One test on them? They can do that at your hospital and send it off, if you doc will order it. Additionally, the mother ship now has a new molecular tumor board that will advise on potential treatments based upon the results of that test -- it's pretty neat. PM me if you would like more info.

The stuff we go through...