What’d y’all do on Saturday night? We had a scary, spooky evening ourselves… (that turned out to be *hopefully* not actually that scary). For those of you with a short attention span (or who just like to cut to the chase)... mom had sudden onset left-sided foot weakness and leg numbness yesterday and we were pretty concerned for tumor recurrence in her brain or new tumor in her spine. We went into the ER and everything checked out fine– no new lesions in brain or spine. She does clearly have persistent focal neuro deficits (left leg weakness and numbness), but it seems to be more peripheral. Hopefully it’s just a pinched nerve near her knee called peroneal compressive neuropathy. We’ll get an EMG pretty soon and follow-up with neurology to find out more. Important to get on top of this because with her foot flopping around, she trips much more easily; and with the high doses of steroids she’s been on, she’s at much higher risk of breaking her bones when she falls! 

Alright…. For those of you who like coming along for the long ride… here goes: 

A lot of you saw the pic yesterday afternoon of Mom outside lookin’ fly and fierce and it would seem all is well. From a lung standpoint, she certainly is improving slightly day by day. When she stood up from playing cards with friends, she had foot drop. 

In the past 6 weeks or so, she’s had a few isolated incidents of “missteps” where her left foot kind of flops against the floor, but those incidents have all resolved real quickly (<15 seconds). This time, it persisted; and was associated with left leg numbness. Her foot was too weak to pick her toes up, so she’d trip over it walking down the hall, and when she tried shifting weight onto her leg, it gave out beneath her and she hit her head into the doorframe. 

I’ll tell ya I did a more thorough neuro exam than I’ve done since med school. She couldn’t point her left toes toward her nose at all–no movement…and couldn’t point her toes outward either… There are a million different reasons for “foot drop.” Some are really scary, others really benign, and a lot in the middle. Given her history of right frontal lobe CNS lymphoma…and the fact that she seems to fall into a lot of the “1 in a million” buckets, we were pretty darn scared yesterday that she might be having either a) recurrence of right frontal lobe tumor (less likely with normal brain scan just one month ago) vs b) new lymphoma in her spine causing spinal cord compression (that was masked by high dose steroids and showing up now that we’re tapering the steroids). I talked with a number of close friends and friends of friends who are physicians themselves trying to gauge what to do– Do we go in tonight? Can it wait til Monday? What else could it be? I knew the answers to all of the questions… but I tell ya it feels better hearing it come from someone else when your own mind is in such a panic. (And I am SO beyond grateful to know so many people who answered right away, validated our concerns, agreed it was important to get checked out promptly, etc. I tell ya. It’s a gift to have such loving, intelligent, realistic yet optimistic friends. One of my friends helped me think through differential of the less concerning things it could be. She agreed that it could very well be quite serious, but gave my brain the hope of thinking about less serious things. Another friend encouraged us to go in and reminded me that we are going in to RULE OUT the bad stuff...and only that…not to find something bad...uh uh! We’re just ruling it out!)

We called the home nursing line and they told us to go in right away, so we did. Struggled a bit to decide where to go– do we go to place closest to us (Allina, where her PCP is) vs Mayo where she gets all of her cancer care vs Minneapolis where she gets her pulmonary care? We ended up going to UMN for a few reasons and I’m glad we did. 

We loaded things up in the car (her home O2–first time she used that tank!) and got on the road. All of our anxiety was through the roof. Hoping for the best. Expecting the worst. And mom made it clear– if it were a recurrence of cancer, she wouldn’t want to do any more treatment. She’s been through enough in the past couple of years. 

I went inside to check her in and let the front desk staff know that I had concern for spinal cord compression and she needs help getting in to get switched from her O2 tank to UMN O2 tank. I haven’t ever checked someone in to the ER before and I was surprised by the whole process… The front desk staff called for an MA who came to talk to me, and once I told them I had concern for possible spinal cord compression, they ended up grabbing one of the ED doctors who came out to the car to assess mom. I happened to know that doctor from my first year of residency when I rotated through the ER, and he remembered me!!! (I hate connections and I love connections. I really do think mom’s case was potentially emergent (if she had spinal cord compression), but I hate that it’s so hard for the system to see what is emergent vs not…and that we often fall back on privilege and connections that get us the things we need.) 

The ED doctor said he was going to activate a stroke code. He talked to me on the side saying he didn’t think a stroke was likely, but he had to rule it out. I agreed of course that a stroke was unlikely, and I let Mama know quickly before all the hubbub started that there was about to be a whole lot of commotion to “rule out stroke,” but that we do not think it probably is a stroke. Just need to cross Ts and dot Is. And BLESS YET ANOTHER FRIEND!!!! One of my friend’s who is a neurologist at the U, but was working at a different hospital last night,  had given the UMN neurologist a heads up about mom… so when the UMN neurologist saw there was a stroke code for mom, she told my friend, and my friend promptly texted me “Did they call a stroke code!!??” Followed by “Ok! That’s fine, but I don’t want you or Judy to be alarmed. I don’t think it’s a stroke. At least based off of what we discussed.” I could cry. I felt so supported and loved and watched out for. AND so grateful that my friends know and love my Mama! :) 

An RN came at mom’s antecubital with a big fat needle and mom said, “Please can you do one of these veins instead?!” To which the nurse curtly replied “Nope. Gotta do here. Time is brain.” Praise be for protocols! (Do you feel the sarcasm?) I get it. I’m glad protocols exist. They need to. And also… it’s tiny things like that where agency is stripped from patient’s action by action. In her case, we all thought the risk of stroke was very low. The ED doctor said he wanted to wait for neurology until they brought mom back to the CT scanner…so we had time… Also, she was already out of the window for which they’d use thrombolytics if she was having a stroke… all of this to say… the IV really didn’t need to be placed immediately (medically speaking)....but there are too many fish to fry to stand up for mom every time. 

Once Neurology arrived, they whisked her off to the CT scanner. We walked out of the ER with her on the stretcher and neurology walking by her side working their way through the entire stroke scale. Amazing someone can walk and talk and assess all at once. When they closed the doors to imaging, I just heard mom say “I’m trying!” (And I knew it was the doctor asking her to point her toes toward her knees, and she was trying but just couldn’t.)

While she was in the scanner, Carol and I hugged each other and talked about how we were scared. I shared that in med school we always learn to think about horses, not zebras… but with each step of mom’s journey, I’ve been concerned about zebras, tried to think about horses, and then found out it is the damn zebra. So we both said that we hope this’ll be the first time I am wrong wrong wrong!  

Within a brief period of time, we found out that the CT scan was negative– no stroke! Whoofta. (It’s funny that that was so relieving especially because it wasn’t even something I was concerned about when we initially went in.) 

After we found out her CT was negative and the stroke code was de-escalated, a different RN came with another big needle to place another IV...and mom said "Why?" He responded it's protocol for stroke code patients... but the stroke code was de-escalated?! He said "That's fine. I'll just document that you refused." (OMG. I drive myself nuts. I know I sound like a complainy bi***. I like to justify it saying I just see a lot of sides of every issue. I feel for the nurse here.  They're doing their job. I wish we had more wiggle room in protocol. Cuz at this point, mom clearly doesn't need two IVs. There's no medical indication, it causes pain, it costs money, costs time, etc. One thing we can all adjust though is our language. Stating that a patient "refuses" something is so harsh!! So if you're a provider reading this, please consider saying a patient "declined" X, Y, or Z treatment instead of refused.) 

Neurology did a thorough history and exam and suggested that we do an MRI of her brain to rule out an itty-bitty tiny stroke and an MRI of her lumbar spine to rule out any compression, but that based on their exam, they thought a peripheral neuropathy was more likely. WHOOOOOOOFTA. What a breath of fresh air. That means they thought cancer was less likely. 

Whaddya do in an ER at 11PM when you feel fairly well except you can’t feel or move your left foot? We played Five Crowns. Caught up on email. Snacked on goodies. Got tired. Tried to wake up. Introduced Carol to Nicki Minaj’s Super Freaky Girl. Filled out MRI forms. Asked when they thought she might get an MRI– like in 1-2 hours vs sometime tomorrow? Then at 2AM decided it was a good time to teach Carol how to play cribbage…. HAHA.

At 3AM they picked her up to bring her to MRI and by that point we were all pretty wiped. The adrenaline was wearing down, and we knew we still had a few more hours at the ER (wait ~1 hr for MRI to be done, then 2-3 hours for it to be read). They wheeled her off on her bed, so her room was empty. I made myself a nice little bed on the floor. (Khoa and I were supposed to go to Whitewater State Park yesterday, so I laid some white blankets on the floor and pretended it was white water I was sleeping on.) Mom’s darn oximeter kept beeping, so I asked a random nurse who walked into the room if they could please help me disconnect it, to which the nurse responded “Well there’s clearly a reason for the beeping. No we can’t just disconnect it.” (Whoof! Life is hard. I get it. We are ALL exhausted.) So I solved the problem by wearing the oximeter myself. It was happy as long as it was on someone. Haha. 

MRIs resulted around 5:30AM and ended up looking okay. Nothing new, big, or scary in her brain or spine. Whew!!! Plan is to follow-up with neurology in 1-2 weeks and get an EMG (nerve conduction study) to look further into what is causing her left leg weakness. 

Her leg/foot has improved since yesterday, but is still pretty weak and she’s still tripping over it. Ay yi yi. We got home around 6:30 AM and got ourselves to bed. 

I tuckered out at the end of writing this novel. Sorry about that. Thanks for reading this far if you’re still reading.