It’s not me, it’s them.
Well, maybe it is a little of both. In the past 14 months that I’ve been going to the OU Stephenson Cancer Center, I’ve definitely had some ups and downs. Unfortunately, I feel the like downs outnumber the ups.
Take, for instance, the time that my medical oncologist’s nurse dropped the ball in getting appropriate paperwork needed to run the OncoType DX test. This was the only thing standing in the way of me starting chemo, and unfortunately, her repeatedly dropping the ball delayed my treatment by eight weeks.
But, mistakes happen, right? Except that they seem to happen a lot there. Here are some examples:
- The time my medical oncologist told me that even if my insurance didn’t cover my OncoType DX test, she could get it done for free. She mistakenly left out the part where the patient must be determined to have financial need. We aren’t rolling in the money, but we certainly don’t have $7,000 in addition to all of our other medical expenses. We found this out AFTER the test had been run and results delivered. My insurance denied it.
- The time when we, so frustrated with the nurse’s actions and very concerned about the cost of the test, met with the director of the center, Dr. Robert Mannel. He was very nice. He apologized, tried to explain some things and then gave us his word that we would not be financially burdened by this test. We all agreed that stressing over this just days before I started chemo was not in my best interest. He assigned a woman named Heather to work with our case. She would bird dog the insurance issue as they appealed it. I met Heather that day. Besides one phone call last year that only happened because I complained to my oncologist that we had no information about what was happening with the whole ordeal, we never heard from Heather. Ever. Oh, and on that one phone call she told us that she didn’t know anything at that point.
- The time when my oncologist told me that if my nausea medication wasn’t working after chemo, I could call and they had other options. I woke up that afternoon and tried all three of my prescriptions, hoping something would help. It didn’t. It was almost 5 p.m. so I quickly called to get a new prescription called in so I didn’t have to suffer through the night. It rolled over to the after-hours doctor. My pure speculation is that he was on his way out the door so he didn’t bother to look me up in the computer. Had he done so, he wouldn’t have prescribed me the same prescription I already had and was already taking. I spent the next week and a half, rotating through all four prescriptions for my nausea. That was literally the worst two weeks I had. With the treatment before, I was able to function fairly normal and with no nausea meds within 5-6 days, but this time, I was sick. Not just nauseated, but flu-like with a very horrible headache that I couldn’t shake. It was Day 12 before I felt semi-normal. That was the worst because I only got two days before I started all over again. Turns out, taking twice as much Ondansetron was likely the reason. The side effects (with just the normal dose vs. twice the recommended dose, by the way) are headaches, lightheadedness, drowsiness, stomach pain, etc. I only noticed this mistake as I drove to my next chemo appointment.
- The time when I went for my first radiation appointment, and when the nurse asked me for a list of my current medications, I told her that I had just been through chemo with Dr. Razaq so all of my medication is in the system. She said that their systems aren’t connected so she can’t see them. She said she’d request them from Dr. Razaq’s office, but also wanted my pharmacy information because “it is usually faster to just call the pharmacy to get your prescription list.” Now, there are several things wrong with this situation, but the most important thing is that they communicate so poorly in that building (they are literally in the same building and only three floors away from each other) that the patient is in danger because they rely on a pharmacy to get my list. Not everyone uses just one pharmacy. In fact, I have used two in the last two years — MD Anderson’s pharmacy and Walgreens. They certainly aren’t seeing the complete picture with that approach.
- The time when my medical oncologist very much insisted (without providing any type of scientific data to support it) that removing my ovaries is the best route to go to avoid recurrence despite the fact that I do not have the mutated gene. We talked about that a little in this post.
Those are just a FEW things on my list of why it is time to move on.
To be honest with you, the only good experience I had was with the team during my radiation. They were always awesome. Except the guy who would come in and linger around even though he wasn’t on my team of people. There was definitely an odd vibe when he was there. But otherwise, it was good.
I’ve put this off until after my last surgery because the idea of trying to gather all of my records for a new doctor is intimidating. I even called two other recommended oncologists. Each time, the front office people were not very friendly. I chose against going with both of them based on that alone.
Then, I called Dr. Aleda Toma’s office. I asked the front desk person if I REALLY needed to forward all of my records to her just to meet her to decide if I want her to be my oncologist. Unsure, she transferred me to Dr. Toma’s nurse, Vicki, who ANSWERED the phone (no leaving messages), and told me that Dr. Toma did need my records. Then she told me all I needed to do was give her my information, and she would get them for me.
What? Are you kidding? I’ve been doing this for two years, and this was the most helpful support person I’ve dealt with. She really made me feel confident that she was handling the situation. And she communicated with me as she went along.
Even better — after a week or so, she was still getting NO response from her requests to OU for my records. Shocking, huh? Well, Vicki proactively called me to let me know this, and she asked if I would try to work it from my end, too.
“Whoever gets it first, call the other, okay?” she said.
So, I end my stint with OU Stephenson Cancer Center just as I expected to end it.
I went online to find out how to request records. If that info is on the Cancer Center website, it isn’t easy to find. I wound up on the OU Medical site. Still not clear. You have to choose between two different release documents — one for OU Medical Center and one for OU Physicians.
I’m at OU Stephenson Cancer Center. Where does that fall? So, I called.
I spoke to a woman who said she’d email me the correct release form. If I returned it the next day, Friday, while she was on vacation, she would have the records ready for me by Tuesday. Spectacular. This was easier than I expected.
Except that she never emailed me that day. She was, of course, on vacation the next day.
On Monday, I called again and wound up on the phone with a guy. I explained that I need the correct form. He told me to download it from the website. When I asked for clarification on which form, he was also confused so he transferred me to someone whose voicemail did not allow me to leave a message. Super helpful.
I then called the front desk of the actual cancer center. Bless that lady’s heart — she is just the sweet person who welcomes people who walk in the door. I expressed my extreme frustration to her. She was very nice and transferred me to Dr. Razaq’s front desk person. Upon explaining that I’m trying to get my records, she said, “Let me transfer you to medical records.”
No, really … I actually said that. I, again, explained to her the frustrating situation that I’ve gone through. All I want is a copy of MY records. After that, she seemed to understand the frustration, and she told me she would have them ready for me in two days.
And she did. And I scanned them. And I will never have to do that again.
More on Dr. Toma later, but a sneak peek: I really liked her.