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!

Installing a BBQ Grill Patio

I used to have a great Weber grill when I lived here before. I had to leave it so I made it a part of the lease of the house but I had a tenant who, in dire financial state, sold it. Those are the risks in leaving things not attached to the house when you rent out your home.

So today (June 3, 2020), I’m getting a NEW GRILL!! It’s kinda fancy (in my book) because it’s a multi-fuel grill. I can grill with propane for ease but there’s a drawer for charcoal or wood chips or I think even pellets. More on that after I pick it up later today. For this new grill, I wanted to create a little paver patio so it wasn’t just sitting in the grass and sometimes mud. Here’s what I did:

Supplies you’ll need:

  • Shovel(s)
  • Rake
  • Large broom
  • Crushed granite (I bought 2 bags but only needed 1)
  • Pavers (I used 20 – 12”x12” pavers)
  • Playground sand (I bought 1 but ended up needing 3 bags)
  • Weed control fabric (this cuts easily with scissors or razor blade)
  • Scissors and/or razor blade
  • Dogs to supervise and approve your work (optional).

Step 1: dig a hole

Step 2: put down weed prevention cloth.

Step 3: put down sand.

Step 4: lay down the pavers.

Step 5 (final step): sweep in crushed gravel in between the pavers and cut away excess weed prevention cloth.

And I’m done! It’s THAT easy. I have a big root I tried to keep in tact and in hindsight, I probably should have cut it out. I think that’s what’s making the middle bulge up a bit. I don’t mind because I’m figuring it’ll keep rain from puddling in the middle.

I was going to put in a decorative edging but I think I’m going to add more pavers once I put my grill on the space. I also think I’m going to make a paver pathway from the gate into the backyard as well. Once some of that is complete, I’ll figure out which decorative edging will work. I also need to get rid of all the excess soil from the hole and mow my yard. But first, I’m grilling dinner tonight! 😃

Coronavirus and cleaning

We live in a very unique time with all the threats of coronavirus, COVID-19 surrounding us. People aren’t going out (shouldn’t be going out) unless absolutely necessary, there’s social distancing happening when we do have to get together and grocery stores are sold out of water, toilet paper and basic cleaning supplies.

We’ve talked about and heard about how to wash our hands – Alton Brown’s video is great, until the very end. There’s been debates about if hand sanitizer is actually effective when taking on a virus (again, see Alton Brown’s video about why not). The thing I haven’t seen a ton of is about cleaning surfaces and being careful when cleaning your home and objects in it.

No sob stories, anecdotes or anything here, just a “let’s think about this for a moment” post. Be careful as you deep clean during this time. A big thing not being mentioned that we need to avoid is chemical burns. If you’re using bleach or hydrogen peroxide to clean, you MUST dilute them. The Clorox website, as well as others, say 1:30 ratio, which means 1 part bleach to 30 parts water. So if you’re filling an empty, clean spray bottle, you have to know how much the volume of that spray bottle is and do some math.

You also have to make sure that spray bottle (or whatever you choose to dilute chemicals in) is CLEAN of old chemicals. Remember from high school chemistry, you’re going to want to put the bleach in first then add water slowly. If there are old chemicals in that container, bleach may react terribly with it.

Hydrogen peroxide (H2O2) is another used chemical for cleaning that must be diluted. Did you know you can buy H2O2 in various dilutions already? YOU STILL HAVE TO DILUTE IT WITH WATER FOR CLEANING USAGE! I found this website for various dilutions but it seems 1:11 is a good solution for everyday use.

We also don’t think about how using chemicals such as bleach or hydrogen peroxide react with our skin with extended use, even if it is diluted properly. Make sure you wear gloves when you clean using chemicals, even the pre-made Clorox wipes (or an equivalent). Wash your hands with soap after using chemicals.

Better yet, consider using vinegar as a cleaning solution. You still have to dilute it but it’s a lot safer for you, your kids and your pets to use in cleaning. There are a TON of websites talking bout using vinegar as a cleaning solution.

Also, as a little self-plug here, I sell Norwex towels. If you’re interested in cleaning with NO chemicals, check out my Norwex website – https://cathybenford.norwex.biz.

Thanks for reading through this personal PSA. Have a great day and enjoy time to yourself, your family and pets during this time.

Back to the ATX

Yes, I’ve moved back to Austin. It was both an easy and difficult decision to make but it had to be made. I loved the kids I worked with and we were making progress towards high quality music making. Leaving them was the hard decision I had to make.

My parents are older, some may say elderly. Both our parents have had some health issues in the recent years, mostly minor things, but watching and hearing about these little things add up from 8 hours away has been one of the most difficult things I’ve had to do in my adult life. Moving back to be near them was the easy decision.

So, with a leap of faith that the right opportunities would come along at the right time for the right reasons, I quit my job at Tascosa and moved back to Austin. Not only am I now closer to my parents, I’m living in their house! 😮 It’s been nice, actually. Already, I’ve had wonderful chats with them about random things and helped them start getting organized and rid of stuff that’s been lingering around the house, in boxes after their fire incident a few years ago. I think in the first week back, I went through almost 25 book sized boxes of random papers and stuff they didn’t need anymore.

I figured I’d either find a teaching job or make connections to teach private lessons, masterclasses and clinics while at Summer Convention. Two days before I left for San Antonio, I got an email from a friend and mentor asking if I might be interested in a job at a charter school. It’s only part time but they’re looking for someone enthusiastic, energetic and ready to build a program. “Like you” were the words in the email. “Sounds great”, I emailed back. That same afternoon, I got a call from the principal and I almost feel like I was hired before we ended our call setting up my interview for the next morning. “Oh, by the way, we start school next Monday. Can you start right away?” was how we ended our call. So there ya go – if you’re patient, the right thing comes along at the right time.

I’m now teaching 6th-12th grade band and orchestra and the entire program is just over 100 kids. My orchestra class (6th-12th grade in one class) doesn’t really fit in the classroom I’m assigned but we’ll make it work. I think right now, we’re all just happy that we get to work together. I’m also working at the desk at The Yoga Room in Round Rock as well as working on some video editing, photography and web editing projects for them. They’re a wonderful yoga studio and just sitting at the desk during classes is a calming and relaxing environment. Once I get my schedule settled, I’ll be coming up to get back into my yoga practice here. I’ll also be helping a friend with office administration stuff for his business. Ya know, back of my hand stuff. I guess I don’t know how to just work part time….

As quickly as the school is growing (it’s in its third year of existence), I’m sure we’ll be moving to a building that’s purposed for a secondary school and my position will become full time before I know it. It’s exciting to be a part of new growth. It’s also a little frustrating because we have very little equipment but the administration is extremely supportive, nothing like I’ve experienced before, so I know that won’t hinder our success. The families are also understanding and willing to do whatever it takes to make the school and its programs successful for their kids. Again, like nothing I’ve ever experienced before from an entire campus view. An example of extreme support – the school asked for donations of community supplies such as paper (both copy and lined), tissues, cleaning wipes, pencils, etc. for our campus. From around 400 student families, they almost filled a classroom, both on the floor and on folding tables, with their donations. Then asked what else we needed. It’s like having a school full of the best band boosters you could ask for!

Me: “Kids, you need to rent your own instruments because we don’t really have a working inventory here.”
Them: “Okay, can I get mine this weekend?”
Me: “Um, not yet, we’re doing instrument testing on Monday so you don’t know what you need to get yet.”
Them: “Oh yeah. Monday night then?”

They’re all willing to get on the same page so they’re eating up counting basic rhythms (Count-Tap-Clap) and Masters of the Alphabet. I’m cramming string pedagogy as fast as I can absorb it and local music stores are more than willing to help however they can. I also had a friend at Yamaha walk with me at convention so he could introduce me to his friends to collect donations of items. I have a lot of Thank You emails to send out still. It’s going to be another wonderful year!