“For I will restore health to you, and your wounds I will heal, says the Lord” (Jer 30:17)
Dear family and friends,
Unless you’re this lady…
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| I mean, that’s one satisfied ambulance rider |
…there’s really no perfect time to get a ride in an ambulance. Well, more on that later.
It has been a while since I have written a post because I didn’t believe I had much to say about the various minor changes here and there. Nothing substantive happened until about 2 weeks ago.
Last you heard, I had a radiation session in December, but mostly I had been reflecting on how we had found joy amidst the challenges of 2020. Also in December I came off the brain swelling medication and had some new abdominal lymph node swelling and Level 8 abdominal pain.
Since then, I had another Level 8 abdominal pain episode. My oncologist told me he wanted me to come into the office if it happened again, so I headed over to UCLA so that he could lean on the most painful areas of my gut. That being accomplished, he guessed that since I hit the ceiling when he pushed on the gallbladder area, that I probably had a bad gallbladder. If you’re like me – a mere amateur when it comes to knowing about all those gut organs – you might have been haughtily instructed by the latest person to edit the wikipedia article that if you’ve been saying “gall bladder” all this time, you are a dunce. You should have been saying “gallbladder.” One word. Make a note of it.
Okay, moving on. My doctor suspected that my suspected bad gall bladder…sorry, gallbladder (don’t want to confuse you), was not cancer-related. There had been no indications that I had a bad gall-blad…dangit – sorry. There had been no indications that I had a bad gallbladder in my most recent CT scan of the abdomen. Okay, but here’s where it gets tricky. To REALLY know if you have a bad gallbladder (YES!!!), you have to have a special gallbladder scan. I asked my doctor if I could just stick around and get that knocked out that day. He said, “Well, we have to order a radioactive isotope to inject into you and have it brought in on an armored car.” So that’s cool, I guess. But I had to wait a few days. I’m building to something here, I’m sure you can tell.
What did the special gallbladder scan show? That I have one of the finest gallbladders known to modern medicine.
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| This is the actual image from my special gallbladder scan. G’head – try to tell me that’s not a fantastic gallbladder. |
There was a time when I got a lot of compliments on my veins and armpits. Now, with medical confirmation of just how great my gallbladder is, I started getting a lot of congratulations on having a really superb gallbladder. That’s nice, and I definitely appreciated the thoughts. But it leaves me with no explanation of the Level 8 pain. I kinda wanted them to tell me my gallbladder was a treacherous knave that needed to be dispatched posthaste. Oh well. Virtue of justice and giving bile storage organs that which they deserve, and all that.
Around the same time, they did a new CT scan of my abdomen. They found that the lymph nodes hadn’t changed in size, so we’re just keeping an eye on them. Having no clear explanation for the abdominal pain, I figured I’d wait till we had another episode. The actual good news in the aftermath of the issues I’ve related thus far is that I’ve gone about two months since an abdominal pain episode. Previously they had been coming every 2-3 weeks. So here’s hoping it was just a passing infection of some kind and that the lymph node swelling was related and maybe has even gone down.
Are you still waiting around to hear about my take on ambulance rides? Well let me tell you one more long, detailed, and uninteresting dead-end medical story first. No? Okay, the ambulance and there being no perfect time to ride in one.
About two weeks ago I had a grand mal seizure – the whole deal: convulsing on the floor, unconscious for 4 or 5 hours. There’s no great time to have a seizure either. But mine was at work. Whether having a seizure at work is the worst time to have one or the perfect time is debatable in my case because I work in healthcare. I was at our call center, where we have an ER doctor located to answer patient questions. She assessed me in an early stage of the seizure, decided I needed to go to the ER, and had the team call 911.
I know I shouldn’t be embarrassed by having a health issue at work, but a grand mal seizure is pretty dramatic and unsettling for those who witness it. So I really wish the team hadn’t seen that happen to their boss. At the same time, pretty nice to have an ER doctor there if it happens. So actually it might have happened at, well, the perfect time.
So rather than title this post “There’s No Perfect Time to have a Seizure,” I focused on the ambulance ride. Safer move, I think. I believe I can truly get behind the assertion that there really is no perfect time to have an ambulance ride.
After a bunch of tests and a night in the hospital, I walked out the next day (Tuesday) feeling about 75%. I worked from home the rest of the week and was feeling 90% by Friday. Then I was back in the office Monday and have been fine since then.
I have had one other grand mal seizure in my life and have been on anti-seizure medications for a while. All the tests done in the hospital haven’t really pinpointed the root cause of this seizure. It’s pretty safe to say it’s brain tumor activity of some sort or another, and that can include a whole range of things that are more worrisome or less so. Here are some things we know:
- They found 3 new tiny brain tumors in the brain MRI. In some earlier post which I can’t seem to find in order to link to, my radiation oncologist told me to expect that new brain tumors would pop up and that we shouldn’t freak out about them. We’ll just address them with radiation as they come up. So it has gone since that day. I’ve had a number of new ones, but they’ve responded well to radiation.
- Something interesting about the 10 days following the seizure: it was not until my radiation oncologist at UCLA (part of the team Kendra thinks is “cute together“) saw the brain MRI they did at the local hospital the ambulance took me to that those new tumors were reported to me. I don’t know if the community hospital team didn’t see them or they didn’t tell me about them, but it was about 10 days after the seizure that I first heard about them. Let me make two observations here that might benefit you if you face a serious illness. (1) I believe it has benefitted me greatly to be under the care of a team at an academic medical center that offers care across all specialties, and (2) Even if I didn’t have access to an academic medical center, I believe the next best thing is that I have a team who knows my whole case history and can doublecheck the work done by a local hospital or doctor if I have a need on vacation or end up in an unfamiliar hospital like I did after this seizure.
- I’m going in for more radiation this week or next for those 3 new tumors. Getting fitted for a mask first thing this morning.
- Since they can’t pinpoint the origin of the seizure, I probably need to do some type of extended EEG, maybe even inpatient in the hospital, in order to try harder to get an answer there.
- I might need to switch to a different anti-seizure medication.
- The laser solution might be back on the table.
- Also, tiny robots might be back on the table.
