I’m a sucker for a gimmick column—Dave Letterman’s Top 10 lists, Power Rankings, Jimmy Kimmel’s Mean Tweets, etc. One of my favorite sportswriters, Zach Lowe, does a weekly ’10 Things I Like and Don’t Like,’ which perfectly encapsulates the gimmick column. Enough structure to keep the column organized and moving, but enough freedom hit what he wants. That is the plan here – but first, a quick update
Body & Treatment Update
Overall I feel great. I’ve settled into a nice mix of getting done what I need to each day while fitting in the all-important afternoon nap. I am really focused on finding the balance between organizing my life for what is to come, getting in some physical activity, and having enough rest. I’m even getting really into the keto thing. The seizures have largely subsided into minor spasms that only hit when I move around, and they never reach the scary or disoriented level. In short, my body and mind are feeling great – with the exception of that left leg, which through some combination of blood clots and seizure/tingling sensation, is progressing – but not very quickly.
The treatment plan has also come together cleanly, which is great. For the first 6 weeks of treatment, the plan is to follow the standard plan of daily radiation and oral chemo. Part of this is not by choice (see #4 below). Still, it also makes sense for me because I feel so great, and given the positives in my favor (young age, great doc & full resection, smallish radiation target area, we’ve even found an NIH study that seizures are correlated with positive outcomes) there is no HUGE rush to jump into trials, etc. I did my radiation prep appointments Tuesday (10/21) and have my first radiation treatment on Thursday, 10/29. Coming out of that meeting, I will get my time slot moving forward, which will finally allow me to put together a little bit of a schedule and plan.
The final round of details on the pathology did come back, and no surprise, the string of bad tumor news continued. The tumor is an unmethylated IDH wild-type with no particularly helpful genetic markers. None of this is a surprise – basically, some glioblastoma start as lower-grade tumors and grow into glioblastomas. Some have a special structure that makes them better candidates for special treatments. Mine came in hot and heavy, and we’re gonna fight it straight up.
Ten Things I Like and Don’t Like
- I love my radiologist – Kristin Janson Redmond, M.D., M.P.H. – Associate Professor of Radiation Oncology and Molecular Radiation Sciences, is very active in the research and clinical trial scene, a straight shooter, and I love everything about our interactions to date. Hopkins organizes things, so you always have a lead for your care: 1) Dr. Weingart for prep through surgery and clear next steps (for some he is the only guy… wouldn’t that be nice ;-/ ) then 2) a Radiologist – Dr. Redmond for me – for the 10 weeks of daily radiation and month of recovery after (Phase 1 & 2 in the diagram above) and then 3) an Oncologist moving forward – Dr. Grossman [introduced here] to from there until the tumor recurs at which point a new plan is developed.
2) I do NOT like Hopkins’ Halloween planning. My radiation preparation process kicked off with getting fitted for my radiation mask (above), and despite repeated requests, they refused to make 2, so I could use one for Halloween. This should be the standard operating procedure for anyone with kids this time of year, and I refuse to let this go.
3) I like the balance of tears – I’ve become a bit of a sap through this process, and this was the week where ‘I can’t believe people are so good to us’ tears finally outweigh ‘terminal brain cancer sucks and I don’t like it’ tears. I keep having super cool interactions with people I haven’t caught up with in a while that were large parts of my life for long stretches, and people keep helping out in cool and unexpected ways.
4) I do NOT like COVID shutting down clinical trials. There are basically 3 stages where you can enter clinical trials with the number of trials and patients opting to enter them growing at each stage:
- Part 1 in the diagram above as radiation begins
- Part 3 – as radiation ends and chemo steps up there are complementary drugs to test alongside the Temodar which is not as effective with unmethylated tumors
- When the tumor recurs
Unfortunately, COVID shut down many of these trials, and they are just now opening back up. It just seems odd to me there aren’t some rules that could be followed, so these potentially life-extending treatments that advance science could be kept open. There was one trial I would have seriously considered entering in Part 1 – basically, a treatment that extends the radiation treatment beyond the tumor area to include stem cells in the brain that appear to be drivers of the tumor recurring – but it is closed due to COVID, so I will be taking the standard treatment.
5) I like great bite-sized content – a lot has been shared, and I’ve read a lot, but a few really cool items have stuck with me
- A devotional dedicated to the Saturday of Easter. There is so much ?hype? around the events of Friday and Sunday but over the last few weeks, I keep finding myself thinking about that Saturday – the day between the struggle and the solution. https://maxlucado.com/the-silence-of-saturday/
- A great poem with phenomenal visual language that feels so right from Dylan Thomas – Do Not Go Gentle into that Good Night
- A great writer and chef living the dream of a few year tumor-free after being diagnosed with a glioblastoma’s high-level advice piece.
6) I do NOT like the guesswork at the cutting edge of medicine – I love the venture capital and entrepreneurial worlds and have spent hundreds of hours reading articles debating the relative values of renewable energy sources and competing battery technologies. The parallels with cutting edge research and medical papers are everywhere. Learning new vocabularies as you go, the power of a strong persuasive writer, huge variances in understanding the math that underpins (or is skewed) to support arguments. While I love everything about the research and the push for knowledge, I have found I am MUCH more comfortable when we are talking about risking some small portion of a billionaire’s wealth and ego than I am my one life :-). I have great advisors and have no doubt I’ll come to some decisions I am confident in – but man, are these stakes different
7) I like having my family and sister in town. Family has bent over backward to make this easy for me to focus on the important stuff (like naps) but having my sister in town for a 3rd time already from Montana is sweeet. Especially as a nurse to help me navigate the medical stuff and a brain tumor survivor. Her tumor story is here – and it is the happy ending kind! If you see her at one of our kid’s events, say Hello!
8) I like local businesses going above and beyond – The Cottage https://shopthecottage.com/ and Garry’s Grill https://garrysgrill.com/ have both blown my mind with their generosity when they learned what I was dealing with. If you ever find yourself in Severna Park please look up one of these amazing local businesses that make supporting our community so core to their mission.
9 & 10) in the form of a question because it is my blog and you can’t stop me:
How Much Would You Pay for a Slice of Pizza?
I’ve mentioned this before, and it continues to both haunt my dreams and be the reason it is impossible to wipe the smile off my face every time I sit down with a kid under an arm or fall asleep with Jenn’s head on my chest. For 15 days, I was stuck in a room where I saw few folks and was fed things like this:
As I came to the end of my first week in rehab a few things became clear
- My rehab leads were awesome and deserving of thanks.
- The organization of the ward was totally wild west. The more people I knew, the more likely I was to get a schedule, out of my room, have help with my discharge speed, etc.
- Because of COVID rules Doordash was out, but I could get special approval for a pizza party for the neuro-rehab ward with real actual food delivered by going up the chain a little.
- The best way to win people over is through their stomach, and if some fresh hot pizza arrived, I would get some.
Needless to say, a ‘Thank You’ party came together for Friday lunchtime, and I got a pretty solid answer to the above question. It turns out I will pay $278.23 for 3 slices of pepperoni pizza and two pieces of fried chicken.
Marketing side note: ‘add fried chicken’ is the best thing to add above a submit button. Airlines have become shameless trying to upsell during the check-in process, but the answer is simple. A cross-promotion with Royal Farms or KFC is maximum revenue.