Note to readers: while I post these blogs to keep you informed, I am mostly posting this one to VENT my FRUSTRATION. It makes me happier. It's therapeutic for me to post it.
So the first part of the path forward was a biopsy to test the tumor for genetic weaknesses that could be exploited by immunotherapy. There are advantages to immunotherapy in the reduced side effects and the better chance for success than chemo (but recognize all chances are reduced after the first choice chemo drugs). My biopsy was originally scheduled for next week, but for once I scored a cancellation, and my good friend HH was willing to run me to the hospital and back. So Thursday it was.
As usual before almost any procedure I didn't sleep well. The bad news is that I woke up at 230 AM wide awake. The good news is that I was allowed to eat until 3 AM and then had to be fasting - nothing to drink or eat for six hours before the appointment. They say it's for six hours before the procedure, but they're so slow to process people that's a joke. Anyway, I had a very early breakfast or a very late snack and went back to sleep.
I went in early since I was filling a cancellation and hadn't preregistered or gotten the pre-procedure blood work done. Both took very little time and I was back waiting to go to the outpatient clinic. After half an hour (record speed) a nurses aide took me back. She loaded me up with two hot blankets (thick sheets) and a tiny apron and told me to strip to my panties, put on the apron, and wait. I asked her if it was going to be two hours or not in the 65F room (I'm being generous here) with a towel and two thin cotton sheets. She said it could be two hours, she didn't know. No surprise there.
Since the last two times I was there they grossly mis-stated the time I could expect to be released I didn't bother to ask for an estimate. Good thing. Before he dropped me off, I told HH that I'd text him when they thought they would take me down the hall to the CT and then he'd have two hours before they'd release me, give or take.
Being a rebel I kept my elastic waistband pants on. I've worn them for the last 6 CTs - no metal in them anywhere. After an hour a nurse backed into my cubicle, got some Purell from the wall dispenser in my cubicle, and left - all without making eye contact or acknowledging my presence. That's the first nurse I had seen. Finally a nurse came in and efficiently did the paperwork and signatures. I was pleased to see that the former 20 page stack was reduced to two plus signature pages and discharge forms. She said I was next in line. The Doctor stuck his nose in, and I was pleased to recognize the same Doctor that did the first biopsy back on 1/2/19. I told him I remembered him and he'd done the first biopsy, was this one going to be the same? He said yes. I knew my chemo Doctor had left the choice of site up to him. He wanted to know why we were doing the biopsy and I said testing for markers yada yada and he said oh, nothing in the orders about that. So there he goes back to the chemo Doctor office for modified orders. At least that didn't take long. I shudder to think I'd have had the biopsy and they would have confirmed cancer type (already known) if he hadn't asked.
After an hour and a half total wait a nurse pushed an ultrasound into my cubicle and did a great job of introducing himself. He was here to start the IV. I checked the tags and he was an RN, but another nurse was shadowing him closely. I should have been more suspicious. He greased up my left arm from wrist to elbow and traced every vein. That only took 15 minutes. Still no IV. I suggested that he try the right if he didn't like the left. I had already had a blood draw on the right, but there are several veins I've been stuck in in the past. Plenty of room left. I've had over a dozen IVs this year, and collectively they haven't taken as long as this one had already. Another ten minutes and he started fishing for the vein with a needle. Turns out he's in training on using the ultrasound to start an IV. I am a minute from throwing them out to get someone without an ultrasound to start the IV when he hits the vein. About f*ing time. Never again. Let's see. I specified no photos and no observers but next time no certified RNs that are in training or anyone in training of any sort. My patience was shot. It's now 2 hours since they brought me back.
He's barely done starting the IV when they wheel me down the hall to the CT and tell me to get on my back on the CT bed. I said the biopsy is prone not supine. They said supine. I said errr.... not if he's doing the perirenal tumor. They call the Doctor. Prone. The staff looks at each other and says "two points for the patient". Ok, I go belly down on the hard cold bed. At least there's a pillow.
The team is efficient and professional, introducing themselves (always appreciated) and the Doctor comes down and takes a bunch of samples (I told him there would be no third biopsy, take lots). Sticking plaster on the back and they wheel me back to the outpatient suite. This is the one thing that is efficiently conducted but never seemed rushed.
So back at the outpatient suite the nurse says I can eat in an hour. I laugh out loud. WTF, it's waking sedation, I'm not feeling it and I can swallow. I said I wouldn't wait that long, I brought food. I asked for coffee. There is none, but she quickly brought me lunch, a turkey sandwich on white bread (dry), a little thing of apple juice and another of sugar free jello. There's also a bottle of water, the first I've drunk in 9 hours. And I am thirsty. The nurse leaves and I get dressed, taking off the blood pressure cuff and disconnecting the heart rate monitor to do so. I'm dressed and have eaten when the nurse returns. I reconnected the heart rate but not the BP cuff. I HATE having my blood pressure taken. She needs one more reading before releasing me so she reapplies it. The cuff goes off and fills, she gets the reading, and then it goes off again because I take it off. This patient has HAD IT. I walk up and down the hall a couple times to clear my head and it's time to go. HH is there, and takes me home. The stress of the whole thing has me mentally fried.
The chemo Doctor wanted one more test as an outpatient to clarify something on the CT. This was an afterthought, "deductible's paid, let's check it out". They scheduled it for a day I couldn't make it so I moved it to the next available day, two weeks off. The instructions I'm given by the scheduler contradict what my chemo Doctor said to expect, so I question the instructions. I get an answer with very different expectations for the procedure, and question that. They decide that the radiologist will talk to my chemo Doctor and someone will let me know. So far no one has called. Currently this is scheduled after my next chemo Doctor visit. I'm not a happy camper. Expect 50 questions instead of 20! I'm not anxious to return to the outpatient surgery. There better be more clarity than there was the last doctor visit or we won't be doing that test regardless of which Doctor's expectations are planned.
