The first thing Dr. Weingart said when he saw my MRI was ‘that thing needs to come out.’ There is no biopsy or pre-work. You just get the surgery as soon as you can, and they send a piece of the tumor to the lab for diagnosis. In the ~70% of cases where the tumor is a meningioma, they get the grade back pretty quick (for my sister’s, they were pretty clear by the day after surgery), which determines how often you check to see if it comes back. If you are unlucky enough to fall in the 30% like we are, the process generally takes 5-7 days and those days are excruciating because that 30% includes some pretty nasty options. Dr. Weingart set Tuesday, October 6th, as our follow-up appointment to have my staples removed, review the lab results, and develop the attack plan. When we heard that, we figured it would be a loooooong wait, but we can make it. We’ll just stay off Google and focus on recovery.
I call it the Great Weight – it is double entendre – see what I did there? And I can’t think of any other situation in life that is quite like it – what a weird, weird time. I bounce back and forth constantly – sometimes I want to know immediately, 2 minutes later, I revel in my blissful ignorance focused on what I can control. One more set of toe lifts, one more good night’s sleep. But it came. On October 6th, 12:15 pm at the Greenspring Station John’s Hopkins facility came. Or did it?
There was a lot to love about this appointment:
- I rolled through the doors out of of my little section of my little floor at Sinai for the first time in 11 days
- I went outside, like, with the sun and everything
- I saw 2 – that’s right, count them 2 – people that I have known for longer than a week at the same time (my sister is in town and drove Jenn and me to the appointment)
- We sat in a sunny courtyard for over an hour while the appointment was delayed
- We learned that a little threshold makes a big obstacle when the person you are pushing in a wheelchair outweighs you by 100 pounds, and the best way to handle that obstacle is not to keep backing up and hitting it again and again
- And mostly we sweated because the Great Weight was coming. It was about to lose its nebulous weightiness, get a name, and a grade, and come with a plan. I am ready for a plan. We figured we would spend the early afternoon eating lunch and reading pamphlets and reddits and finally learning what was in store.
And then, Dr. Weingart came in and totally confirmed everything I love about him. My sister refers to neurosurgeons as aliens. You have to be. Dr. Weingart performs about 400 surgeries per year and has to be functioning with absolute perfect clarity for every single one of them. He sees the best and worst kinds of tumors. He delivers great and terrible news that will change huge swaths of people’s lives several times per day. He saves lives all the time but presumably loses some too. I can’t imagine have anything like normal emotions in a situation like that. Can you imagine a guy like this riding the ref at his daughter’s soccer game?
And he delivered a virtuoso performance in this appointment. He casually walks in 1.5 hours late (which is totally fine… the surgeries he does are 1000x more important than these updates), absentmindedly opening a pair of sterile tweezers, walks over to the back of my head, and starts pulling out big metal staples as he asks me how my leg is feeling and casually mentions the lab results aren’t back. He reassured us he has followed up several times with the lab and asked me to follow up with an e-mail Thursday and if no luck, then maybe sometime around Monday to check. He asked if the removal of the staples hurt (yes… yes it did), and when he stopped for a minute because he was talking, I encouraged him to get on and finish with the last of them. He said he was impressed with the strength in my leg, and it looks like the knitting back of the brain seems to be going well, so while he couldn’t make any promises walking is very likely, though jogging or running may be tough. He then asked if I was always this ‘glass half full,’ and when Jenn and I said yes, he smiled, said ‘hmmm,’ and ‘You look great, good luck’ and left for his next patient.
So where does this leave us?
- We did ask if the very worst diagnoses are still on the table – which is really all I care about… we just gotta avoid those 1-2 very worst ones – and he said they are but that ‘a lot of times’ they come back faster. If you think I haven’t chewed on that phrase in the last 24 hours you’re crazy.
- While I have 100% avoided Googling and reading anything new every since I immediately and deeply regretted researching the writeup of my first MRI, my sister and Jenn have been reading more and it sounds like these things can take a while because they are not cut and dried so they may have to go before second opinions and review boards. Maybe I have something really cool in there?
- But the great weight still hangs. It is just as big and just as nebulous as ever only somehow it has gotten even weirder my removing its end date. And this, my friends, is why I started a blog. You’ll know shortly after I know, but none of us know when that will be.
I keep thinking there is a great 2020 meme in here somewhere: ‘Did you send the tumor?’ Yup. ‘Not the good kind?’ Nope. ‘The plaque for isolation?’. Yup. ‘Hmmmmm, what’s a standard lab result?’ 5-7 days. Perfect, triple it. Done. #2020
