I went in to see Dr. 7 on Wednesday and had my usual brief upbeat reality check. How am I doing? Normal. The NEW Normal, not where I want to stay, but where I was last chemo round and the round before and the round before. That is to say, NO neuropathy, some tinnitus/ ringing in the ears in the evening, NO hearing loss, YES heat sensitivity, NO nausea, etc. etc. etc. We talk through the main serious side effects. YES, I'm still working, but can't work much in the heat. Every thing is normal, the NEW Normal. The Chemo Normal.
We talked about the cancer blood marker decreasing by 1/3 last blood test. What does it mean? It means the cancer marker went down. Why did it go down? We'll know after the next CT scan. One accessible tumor seems to palpate smaller, but there are so many factors that it's hard to know for sure. And that tumor doesn't matter, only the one with the strangle hold on the Inferior Vena Cava that matters. And we talk about Dr. 6 saying I could have been still on the plateau on an exponential curve of response, and the next CT could show big changes. Dr. 7 is more philosophical, saying that's possible, both Doctors have seen it all, and what's important is the next CT scan. But the info we have now - largest (but most insignificant location-wise) alien puppy (tumor) seems smaller, and blood test shows a decrease in the cancer marker. The new Normal. I can get the news that we don't know until the scan and accept it. Patience is not one of my virtues, as my Dad used to say (often).
I WALKED back to the horses on the 4th, glad to see them! I need to visit more often, and the heat isn't as oppressive in the morning. Evening was always my time to ride - after work - so I need to rearrange my thought process and go in the morning. I feel like I'm neglecting them, I'm so glad to have the trusted employees at Indian Ridge taking such good care of them. Ponies - as I call them, even the now deceased Dickens at 17 hands and 1750 lbs was a pony. Dreamer and Stormy were happy to see me. I'm so glad to be loved by my ponies.
Next I drove over to 7 Mile Road and headed slowly over to the county line, birding on the way. There was lots of song for July including an Ash-throated Flycatcher, and more Black-throated Sparrows than I usually see here. The Cassin's were singing well. I keep hoping for a Hidalgo Botteri's Sparrow somewhere like this, but today wasn't the day.
Ambetter, the insurance company, denied the next CT scan - they're 5 for 5 on that. Usually the excuse is they couldn't find the documentation that Veronica, the nurse sent in - even after Veronica called and confirmed they got it. Then Veronica, donning her Superwoman costume, has to go to the peer to peer review and bludgeon the reviewing doctor with the idiocy of denying the scan by providing the SAME DATA that she sent the first time. It has to be a waste of time and money for Ambetter to play this game, since they're paying doctors to do the same work twice and still paying for the scan. The one CT scan that wasn't challenged when denied and wasn't from Dr. 7 but from my Primary Care Physician would have located the tumors six or eight months sooner. Idiocy.
Almost forgot. I asked Veronica where this CT was located, and it's a new office. That makes 5 places I've had tests scheduled. It's downstairs, same building - so I stop by to talk to them on my way to the blood work for chemo. I was moving the test to the morning when the admin said "the tech prefers you fast 8 hours". Now I'm no rookie, and the last 4 scans were 2-4 hours fasting. Why would the tech need me to fast 8 hours? He's not reading the test, he's just doing the scans. Well, that's what he likes says the admin, though admitting that all the other CTs and the main scheduling office recommend 4 hours. Let me have the number for the central scheduling office! I call Veronica and she says she normally tries to schedule people elsewhere. Hm. Wait, what? So I call in and inform the nice lady at the main scheduling office that I need a test the same time and day but at a different office, because the tech at the office where I'm scheduling insists on 8 hours fasting instead of 4 hours fasting. The scheduling office agrees that's odd, 4 hours is recommended. I said it's not odd, its crazy, I'm not doing it. I need an appointment at a different site, same day and time. Voila, new site, same time. Oh, where is it? Yet another new site, 6 places I've had tests scheduled.
So I go in for chemo today, July 5, and I hear after 45 minutes (30 minutes from appointment time) that there's a problem, maybe with finance. The hospital website was down last night so I ended up paying a small bill on my phone, so I know the record at finance is clear. I call finance and miracle of miracles I find a live human and confirm that there is no hold at finance. I go back to the check in staff and they inform me it's not a hold with finance, it's a hold from the insurance company! As of June 28, two of my drugs (the two effective chemo drugs) now require prior approval. Stalwart staff from the chemo office are walking the issue over to Veronica, the same Superwoman, who is back doing battle with the insurance company. I hate to say it, but that's the NEW Normal.
So having a fully charged cell phone and a serious case of annoyance with Ambetters customer service (actually lack thereof) I call Ambetter. After finding two electronic chains that lead me to a recorded message saying I've reached them after business hours (9-930 AM on Friday July 5) I find a live human. I explain the issue - I've had this treatment every three weeks for 5 cycles. They should have notified me IN WRITING that this change was happening, and furthermore they should have notified my doctor IN WRITING. By the fifth time explaining I was complaining about their lack of concern for their customers (and using smaller words each go, no "furthermore" by the second round) I think they got it.
I say "they" not to be politically correct - we didn't get to personal pronouns until later - but the pharmacy tech that joined the call was trying to tell me how to fix the issue. I said again - fourth time here - that the Doctors office was doing that, I was complaining about customer service. I should have been notified - and my Doctor should have been notified. In writing. That's when the pharmacy tech - female - called my doctor HE. I about had a cow. Here's three women - my guess on voice for the other two- on the phone and one presumes my doctor is MALE. I chewed her out and told her in this day and age she should not presume to gender label my doctor, who is indeed FEMALE. But they should have just said my Doctor. Remember, all this is being recorded. So one more go through my complaint, issue forwarded up the chain through Ambetter and the pharmacy, and ten minutes later I get started on the chemo. An hour and a half has passed since I arrived. The operator at the phone back actually did a good job, asking for my Doctors name and FAX number. I tried explaining I don't FAX with my Doctor, that's outmoded technology. I call, text, and email my Doctor, but I don't FAX. I do pass along her phone number, she can ask for the FAX. And bless her heart, she offers up the direct line to the phone bank at Ambetter. Wow. Now I can call all the time! Look out! Let's not make this NORMAL.
Oddly when they take my blood pressure it's a bit lower than normal. Perhaps I need to rant more often? My heart rate is up 10 bpm, probably for all the loud talking and hand gesturing. Red blood cells seem to be going down but otherwise blood work looks normal. The NEW normal. Of course, I have no idea what the old normal is, they didn't start sticking me regularly with needles until I was sick.
I later take to social media to complain about Ambetter's lack of customer service, but I don't mention there that I have cancer so it's hard to whine too loud about the lunacy of it. Perhaps they should approve the PLAN of # number of chemo treatments followed by a CT, but no, they want to deny each drug and test individually.
So on to the seven meds. Seven? Eight. Pills are Pepcid. Benadryl. Tylenol. IVs and push are Steroid. Steroid. Nausea drug. Chemo Drug one. Chemo Drug two. Still a mix up over the Pepcid by mouth - they have IV but not pill. I'd rather take a pill over an extra 30-45 minutes IV, so we wait for pharmacy to send it later with the chemo drugs.
As usual the 50 mg of Benadryl and the steroids and who knows what else gives me a couple hours of a nice nap. And then home for an early snooze after eating a Whatburger I grabbed on the way. Almost 8 PM, about time for bed on chemo day.
