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!

A look back at 9/11/2001 from 9/11/2021

I was 28 years old, in my second year of teaching music at Robertson Elementary School. In a way, our campus was “mourning” already because the move of our beloved principal to another campus. We were slowly getting accustomed to this new principal and working hard to give him an opportunity to be a different leader than we were used to.

I don’t remember a lot of details about first thing that morning, it was just like any other. I started the day with my planning time while classroom teachers started their day in their regular routines with students. I walked to the door of my classroom to welcome a 3rd grade class to music a few minutes early so I could chat with my classroom neighbor Cheryl while she got her day started.

This was an era in which we had TVs and VCRs in all our classrooms with (limited) cable TV connected. The TVs in our (Cheryl and my) wing were rarely on so when I got to the hallway and saw her intensely watching something that looked like a movie on her TV, I was thrown. I remember asking her, “what are you watching? Is this a movie?” when the second plane hit the World Trade Center Tower 1.

Here comes the class that I need to teach music to, walking down the hallway and the world is literally changing before my eyes on this broadcast I’m watching over Cheryl’s shoulder. Everything from that moment on is in my memory in segments or short phrases, but I can’t remember exactly what order anything happened in.

  • I remember going to my computer to check my email to figure out how we were going to be asked to handle this situation.
  • I remember trying to search and find out how I can get updates on the situation. (this was before smart phones and instant notifications)
  • I remember hearing that the Pentagon had also been hit and worrying for my oldest friend Tiger, who was living in DC at the time. I think I tried to call him but phone lines in DC were all busy and I couldn’t get a hold of him right away.
  • I remember Tina, a kindergarten teacher, learned a friend she had just reconnected with was on one of the flights that went down that day. She and her friend hadn’t seen each other in many years before that summer and now her friend was gone.
  • I remember Kay’s son Michael was in the Pentagon that morning and for a bit, Kay couldn’t get ahold of him (phone calls into DC were difficult to connect through).
  • I remember being told by RRISD to turn off the TVs in classrooms and to not talk to students about this incident until we knew more and feeling both relieved and frustrated. I was still a brand new teacher and having the responsibility of knowing what to say to not overly upset these young children was such a relief. On the flip side, there was a sense to me that it wasn’t fair to keep them unaware of history in the making. It was a teaching moment and even being just a music teacher, I wanted to take hold of it. Still, I did as I was asked and kept the news to myself and taught whatever lesson I had in store for that day.
  • I remember being told that our neck of the woods could possibly be a target with the large campuses of Dell Computers and the Dell Diamond nearby.

For several days, all I watched on TV at home was news about the events of that day. It was all that was on. Watching it everyday caused me to feel my first bout of major anxiety and after about two days of it, I had to just turn it off. No new information was coming and reliving what I saw on TV that morning all the time was not good for my mental health. The first non-tragic thing I saw on TV was David Letterman and his iconic monologue on 9/17. Was it really only 6 days later?? I remember it feeling like it was WEEKS or MONTHS later.

Now, I’m 48 and the events of that day feels like it was just a few years ago. There are memories from that time that are just frozen in time. I don’t think anyone I worked with at Robertson is still there. Several friends (including Kay and her son Michael) have since passed away. I’ve taught in several other grade levels and areas of Texas. I’ve gotten a masters degree, started a second as well as a doctorate. I now teach band back in Round Rock ISD and am working towards a move into Central Administration. The kids we taught were between the ages of 5 and 10 at the time. That makes them between 25-30 now. Wow! I’m so glad to have taught at Robertson with THOSE colleagues 20 years ago. I’m not sure I would have experienced that whole time in the same way. I’m not even sure I would have stayed teaching if it hadn’t been for the love and support we all gave each other there. I’m so grateful for them!

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.

Life Metaphors in Doing Yardwork

I just spent about 30 minutes pulling weeds from the backyard this morning. Here are some insights I came across while doing that in the silence of the day:

  1. Having good tools makes the job so much easier.
  2. Weeds in your yard actually means that things can grow there so once you’ve pulled the weeds, plant something in its place that gives you joy!
  3. If another life form is really benefitting from that plant at that moment, you can get to it later. (There were bees pulling pollen from flowers attached to weeds.)
  4. Even with good tools, it takes time to get all the weeds from your yard. Be patient.
  5. Sometimes you think you’re centered in on the root of the weed but you’ve actually a few inches off. Go back and get that root once you can see it better.
  6. Sometimes you think there’s just one plant but it turns out, there are 2 or 3.
  7. The nastier weeds hide inside a patch of smaller weeds.
  8. The weeds that are also vines can’t be left for later if you can’t find the root. Start cutting the vines down in search of the roots.
  9. Once you pull a weed, you can put it in a discard pile to throw out when you’re done. You can also have more than one discard pile.
  10. Sometimes, weeds can just go into a compost so they can nourish the yard later.

Some of these are just gardening facts but many, I saw life metaphors in as I worked. Okay, back to my Spring Break reset!

Love you, mean it!
~C

3 Nights in Hamamatsu, Part 1

Once we arrived in Hamamatsu, we got our suitcases, checked into our hotel and wandered the area of the hotel a bit. We were told that karaage (fried chicken), gyoza (Japanese dumplings) and unagi (eel) were specialities of the area so we set out for some gyoza. The front desk suggested we visit a restaurant near the train stop we came into so we headed that way. We learned that larger cities in Japan have a great series of underground passageways to help keep pedestrians safe from crossing busy intersections. In Hamamatsu, this was very useful. In Tokyo, it was still way too easy to get lost underground so we often stayed street level (that is an option still).

Menu picture:

fullsizeoutput_7846

What we got:

fullsizeoutput_7845

After we ate:

fullsizeoutput_7847

It was really yummy! 4 people easily shared that plate of 25 or so gyoza.

Our hotel had a great view of the train station area, too. After I took this picture, I thought about taking one with all the lights in the room off but I really like the way it turned out and kept it as is.

fullsizeoutput_782d

The next morning, we had a visit with the Deputy Mayor of Hamamatsu. It was a good will type meeting and Keith Bearden was very eloquent with his remarks on our behalf. I was reminded at how passionate he is about music education and was proud to be represented by him and his words. There was a nice gift exchange, accompanied by lots of bowing (of course) as well. This was apparently highly appreciated by the City of Hamamatsu as well because our meeting made the paper!

The Deputy Mayor:

fullsizeoutput_782e

Keith Bearden speaking wonderfully on our behalf:

fullsizeoutput_7836

The gift exchange:

IMG_0225

With the Deputy Mayor, Mr. Osada:

IMG_3460

The newspaper article:

vAmLvNT0RJybpXIEnGqnjQ

Hamamatsu is known for headquartering several musical instrument companies.  We had a great tour of the Yamaha factory. Unfortunately, they don’t allow any photos inside so I don’t have any to share. It was a great tour, though! The Hamamatsu Musical Instrument Museum is also there. It was so amazing, it will probably get its own post.

Suzuki Motor Co. has their headquarters there and Honda Motor Co. was founded in Hamamatsu. It would have been cool to go see one of those factories (especially since I talked so much about car manufacturers with my student Xavier) but our days were so full, it wouldn’t have been possible to squeeze in another tour somewhere. Maybe next time I’m in Japan without a pre-set schedule, I’ll make a point to go, probably to Honda.

After the City visit, we went to Kaisei Junior High for our first band visit. I’ll write a post on that visit soon. If you’d like to see all the pictures of this day, please view them in my Flickr account:

Hamamatsu, Japan
City of Hamamatsu visit

More adventures, band, band and more bands, to come!
~C