Tumor Update – MD Anderson Trip

On April 27, 2022, I took a trip to Houston for my initial visit at MD Anderson Cancer Center, after 3 months of trying to get an appointment. I’d did find out why my experience in trying to get myinitial appointment was such a nightmare, but I’ll tell you all that at the end.

I hit the road around 5:15 am for my 9:00 am appointment. It was all smooth sailing down HWY 290 until I hit the FM 1960/HWY 6 intersection then it was all Houston style traffic. I now remember another reason I’m so glad to not live in Houston!

I arrived at MD Anderson around 8:30 am (because to be on time is to be late) so I could take care of any paperwork that might still be left to take care of. I did all that was asked of me in the portal several days before but low and behold, I had to redo everything when I arrived. It took them 40 minutes to figure it all out because I had a “hard stop” on my account. I’m pretty frustrated at this point because I’m late for my first appointment and afraid they’d just have to reschedule me for another day. No ma’am Pam, I can’t take another day off for an initial appointment day! When they finally pulled me in to re-complete the paperwork, I expressed my concern and they said that appointment times are not as firm there as other places. Once I was there on my appointment days, they’d get me in without a long wait, regardless of how far behind it might feel I am. Thank goodness for some care and concern, FINALLY!

I first saw Dr. Paul Gidley in the Head and Neck Center. He’s a Surgical Oncologist, specializing in skull based surgeries. I usually record my conversations with my doctors (thanks to Evan for the suggestion) but completely forgot to do that with this visit. Most of it was his examination of my head and neck so there wasn’t a whole lot to record. I appreciate that he’s a musician and understands how important unhindered vocal and hearing functions are in my life. He told me that the doctors I’ve been working with here in Austin are all on the right track and that unless the tumors show signs of substantial growth, we should just leave them alone. Surgery on these types of tumors isn’t really something that’s considered unless something is emergent with them because of their location and proximity to nerves, major blood vessels and such. He did mention that there’s a fairly new drug trial that could potentially reduce the tumors to nothing that they’d submit me for (in lieu of radiation) if the tumors are growing substantially. Needless to say, I left that visit feeling quite positive about things.

Next, I saw Dr. DeMonte, a neurosurgeon (neurosurgeon #3 in this whole thing). I did remember to record that conversation, even if most of it was just an exam. He told me much of the same things as Dr. Gidley but he wants me to see the Endocrinologist on staff at MDA and to see an Otolaryngologist as well. I can see one here so I’ll be making an appointment with Dr. Cheung-Philips at River ENT soon. (I have to admit that I’ll have to listen to my recording to remember why, though.) He agrees with monitoring the tumors via MRIs every 6 months for about a year, then coming back to MDA if there’s signs of significant growth so they can really explore realistic next steps at that point. Until then, I’ll keep hanging out with my doctors (primarily Dr. Fisher at Texas Oncology) here.

I also met with Dr. DeMonte’s Nurse Practitioner, who has been tasked with helping improve all the systems I had such a hard time with. After explaining all the back and forth and “no ma’am, you can only talk to Marina for an initial appointment with Dr DeMonte” every time I called, she told me that at the beginning of the pandemic lockdown, anyone still in the intake and new patient crew had to work from home and they haven’t come back to the facility yet. The problem with this is that the newer staff members have no idea what the environment and vibe of MDA is like because they’ve never had to step foot on the campus. For them, new patients are just numbers and check boxes they have to go through to do their jobs, not actual humans who many have a terrible condition called cancer that is really scary.

I explained to her that my communication with my initial MDA staff members were one way – I was basically summoned without any say so in when I could come to Houston and how long I could afford to stay. Even my access to the portal wasn’t turned on fully until my initial appointment – I’d be sent a message with no way to reply to it. Basically, I felt cut off from being able to make my own decisions about my own healthcare. Not okay.

She explained to me that the portal was a new addition and still many tweaks were being made. She tried to explain when I would have more access to the portal but even her information didn’t line up with the reality I was experiencing. So we talked about 20 minutes and she wrote notes on everything I told her about my experiences. Hopefully, it’ll help the next bunch of folks who are trying to get initial appointments at MDA. I was really grateful that she truly cared and was apologetic for my negative experiences. They’re truly not being represented well by their “front of house” crew!

So there you go. Next up for me is that MRI I’ve been trying to get for a few weeks now and ARA hadn’t been able to get my appointment correct. I hope that was just an April, 2022 thing! I have my MRI scheduled for the afternoon of May 10. Fingers crossed it all goes well!

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