It's Not BRAIN Surgery... Except That It IS!
28 June 2013
A week ago, on Friday, we were going to go to our friends Marc & Jenna's house for the first time since we moved here, to South Florida. We were headed to Target to do some shopping before our playdate with them and their kids, to get our fruit and dessert to bring to share.
Rob drove. At least, he started to drive. He wanted to turn left out of our neighborhood, but he turned all the way to the right and bumped the curb. Then, turning left, he made a HUUUUGE, wide turn into oncoming traffic before correcting himself. Driving down the road, he again nearly bumped the curb. Finally, turning left onto the Turnpike, he made a wide arc and turned into oncoming traffic, hit the curb and barely made it onto the right-of-way. I screeched at him, not for the first time, to STOP THE CAR and let me drive. I hadn't been doing any driving since I've become so dizzy lately, but I wasn't dizzy that day, thankfully. He let me drive but denied there was any problem with his steering. Hmm.
On the way to Target, he slurred his speech and was using wrong words to convey his meaning in various conversations we had. He became argumentative when I pointed out the problem and denied there was anything wrong.
Meanwhile, he had a headache. Pain level was about a 4 or 5.
At Target, he was acting like a complete child. It became so ridiculous that I had to treat him like one of the kids and occasionally scold him. He acted petulant and sorry but would act up again, bothering the children and just generally behaving like an ass. He denied there was any problem with his behavior.
At this point, I was frustrated with him to the max and wanted to slug him. However, I was way more concerned than irritated, and insisted we go to the emergency room. He had been diagnosed with a cavernous hemangioma (a benign brain tumor) in November 2012, but back then it was just a "watch and see" condition about which we'd almost forgotten. In fact, I was more worried that he'd had another mini-stroke or a seizure or something than the tumor.
We got home, having canceled our playdate, and prepared to go to the ER. Almost ready, he fell asleep. I tried to wake him and was successful, so I decided to let him sleep and catch a few zzz's myself. We woke up around 8 PM or so and headed in.
They took him back to a room immediately and was admitted before we could blink, practically. They took him for a CT scan and found "some spots" on his brain. They took him for an MRI, and an MRA, and did an EKG and an EEG, and drew a ton of blood, and then they came back and told us what we already knew: he had a brain tumor.
They also told us something we did not expect to hear: the tumor was pressing on his cerebellum and brain stem, which explained his off-balance behavior and erratic driving.
And they recommended he see a neurosurgeon.
Saturday night, they released him.
The headaches continued and worsened over the next several days. He seemed mostly 'all there' but occasionally slipped into confused and confusing behavior.
On Wednesday morning, Rob was slurring his speech again, walking very slowly and with much trouble, and trembling visibly. I woke up the kids and raced him back to the emergency room.
This time, the care was bumbling at best. Even the neurologist seemed like a freakin' idiot who was more confused than my husband. The kept kicking the kids and me out of his exam room and not explaining anything, and I wanted to scream. Friend Jenna came to pick up the kids for me, so I could be with him. They still shooed me out of the room.
I couldn't take it anymore. I got on my iPhone and Googled "miami neurosurgeons" and started making calls. I finally found one who took our insurance, and they asked me, "Can you be here in an hour?"
Um, YEAH. We will BE THERE.
Well, by the time I got Rob released against medical advice and got a disk with all of his images from Friday's tests, drove the 45 minutes to the University of Miami Hospital and found the neurosurgeon's office, it was two hours later. And I'd forgotten we now had a co-pay (thanks, Tricare, for 20 years of no medical bills) and also didn't have any money on me. There was much chatter behind the desk, and finally they agreed to see him and let us pay the co-pay on Friday... and so they did.
The neurosurgeon looked at his images and very matter-of-factly stated, basically, "This is what we're going to do, and this is how we're going to do it." He had no real bedside manner, but I didn't care because I could tell he knew his stuff. And then he paged a radiology-oncologist to come in and look at Rob's images, too.
The gist of that visit is as such: The tumor is large and quite deep in the brain, so much so that it's very risky to do a 'normal' surgery to excise it. Instead, they're going to do a Cyberknife radiation surgery to blast it into oblivion with minimal damage to the surrounding brain tissue. There is a 70% success rate with this option, which is about as good as we can expect with the 'normal' surgery, now our Plan B.
I took Rob and the kids home that night, where we cuddled Jack suffering from a painful sunburn and even more painful 'growing pains.' I think we finally fell asleep around 3 or 4 AM.
At some point after noon, lying on Rob's shoulder and chest, I became aware of mumbling and movement underneath me. It was Rob. He was chattering away unintelligibly lifting all four limbs up in the air. I tried like mad to wake him, to get him to open his eyes, but I couldn't. The next thing I knew, he'd wet the bed, so it occurred to me much later that he was trying to get up to use the bathroom. My poor man...
Only Chloë was awake then, so I called out to her to wake up her brother and sister to get ready to go back to the hospital. She and I jumped into a quick shower together while Rob slept. In the shower, I told Chlo that I was going to be asking way too much of her that day and probably for the next few days to come, that I would need a lot of help, and I needed her to just please do what I asked her to do. She somberly agreed. After showering, she gathered together clothes for herself, me, and Rob, grabbed snacks and drinks for the hospital, and got Jack and Sophie ready to go. I am so proud of my little lady-baby.
Getting Rob ready was another matter.
He fought against me while I changed his clothes, slipped on an adult undergarment so he wouldn't have any more 'accidents,' and tried to give him a quick sponge bath. He fought SO hard against me, having no understanding of what I was trying to do for him. Once I got him dressed, I half-walked, half-carried him to the door, with him bracing himself against the door jambs and every other available surface along the way. He was completely agitated and fought every step of the way. Once, he insisted I let him go, that he could walk, so, frustrated, I said fine and said I would let him try. He got ready, and I let him go. I caught him a half-second later when he started to fall. Hmm.
Trying to get him into the van was interesting. Neighbors had pulled up and hollered over to me, "Do you need help?" I shouted back, "YES! PLEASE HELP ME!" and they came over. The woman pulled me aside; the man took Rob from me and got him into the van. I gave them a brief explanation, and they scolded me for not calling 911. Since our house is still in boxes, I was embarrassed to do that and wary. They scolded me again, but in a loving and gentle way. They hugged me, blessed us, and volunteered to help with anything they could do. I was so grateful. Total strangers!
On the way, I called the neurosurgeon and let him know we were headed back. He said to go straight to the ER at the UM hospital and hung up on me. Okaaay. Rob, almost unintelligible still, said, "I hope I get a different doctor this time. That guy was a douche." Yeah, maybe he's douchy, but he knows his stuff and that's all that counts. We'll stick with him.
After I dropped off the kids to Marc and Jenna's house, I zoomed up the Turnpike to the hospital, keeping Rob talking the whole way. He seemed so unhappy, so troubled, so worried that he wouldn't make it. I reassured him a thousand times that he would make it, he'd be fine, and we'd live a long happy life. We had this conversation:
Rob: "Oh, Melanie. I love you more than pickles!"
Rob: "Yeah, pickles are really good!"
I laughed. He was in a good mood, I could tell, all things considered. The ER brought him back to a room promptly. He cracked jokes with me and the nurses the whole time. His head was killing him, and yet he was able to smile and be funny. I had to translate everything he said to the nurses and the ER doctor, because no one else could understand him.
Finally, the nurse gave him a shot of morphine, and then he was feeling better. More lucid, finally, and more chipper. Then the doc came back and told me they had admitted him and all would be well. He said "the team" would evaluate him in the morning and decide whether to do surgery that day.
I left him, after a thousand kisses, and went to go get the kids. At last report, at 12 PM he'd had some more morphine and was sound asleep. It's nearly 3:30 AM now. I plan to wake up the kids in 2½ hours and head back for the 50-minute drive to see him and the neurosurgeon. My friend Erica is going to come down and get the kids for a couple days.
From there, it's anyone's guess. We welcome your thoughts, positive vibes, and of course prayers. Thank you in advance. I don't know when I'll be able to post about it again, but hopefully it will be better news...