Warning on this one, I’ll put ***when there is a bit of grotesqueness!***
Saturday the 11th, we came home with Tower Cafe food and it was so odd to come into the house. I was so uptight. Rather than be grateful that things were being taken care of, I was terribly annoyed with the bottle system for Lemon, (Tom now!) or where stuff was (because the army of women could not read my messy mind?). I was uptight and hostile, I would say.
I did not sleep well that night. I had been looking forward to Steven holding me for several nights, but I could not be restrained. I was on vicodin and a few steroids as well. Tomás woke up in the night and Judy sweetly went to get him, but I could hear every sound, every snore, and could not sleep. Sunday, I dragged the entire family to Newman Center Mass, hoping to see Father George, but he was, I guess, off for the month. How I got a magical morning with him just before surgery, I have no idea. I owe him dinner, some whiskey and the Knock Holy Water I have in the closet at the least. Lisa’s wonderful parents were there, Lisa and Brandon, Clark and Mom. Judy and Steve hung out with Tomás in the back of mass in case the baby started to fuss. Clark kept one hand near me as close as it could be. I think he was afraid I would faint. The church was hot and the woman behind me laughed that she thought she was having a hot flash due to the temperature and all the women except my own stunning mother seemed light-headed due to the indoor heat!
Upon walking into mass, Paco saw his Uncle Brandon and his whole body relaxed. As though Brandon’s presence was contagious tranquility. (It has been, truly. How are they such a magnificent pair, Lisa is focus and determination, B is tranquility.).
Paco was half drawing and half listening during mass, and suddenly said to me, that he thought the golf ball in my head was his fault. I am unsure if he thought that he had left a ball and I had fallen on it, or who knows. But then my tears came as the look of culpability on my 5-year old’s face came across. He never relaxed for the rest of the day after that. No matter what I said.
I had a scarf and lots of make up on, trying to look feminine! Extra makeup for good measure.
That night, we decided to send Judy to my mother’s for the evening. She is a huge help, but like every working nanny, she was exhausted. She went to Pensione Barbara for evenings giving everything a break for a moment and convincing Steve and I that we could do our normal life in the evenings.
That night, about 5 AM, I broke out in a nice rash. I thought it was perhaps the Vicodin for pain. Steve, being Steve, called into Neurology and when the returned the call, I learned it was a reaction to Dilantin, the anti-seizure medicine that I had been taking since Saturday the 4th, the medicine that had stopped nursing. Evelyn, the rocking nurse of Dr. Williams the genuis, said she has seen the breakouts 3 mos into the medication. So I was officially off the meds that moment. I had been taking 3 capsules at night for the previous days and was on an IV push 3 times a day when in ICU. ***when talking to the nurses who were pushing the IV, along with every other great med they gave me, I concluded that the Dilantin push made my …rear end burn. One of the nurses had said, yes, she had a patient who had said the dilantin had made him feel like his dog, wanting to drag his “ass on the floor.”*** Ah the allergic universe brings people together.
Anyway, so I was off the Dilantin as off 11:30 Monday and my mom and Judy were there folding laundry and I was trying to nap with ice on my head to get the swelling down. Evelyn had again interviewed me on post op issues and all was normal. At 1 PM though, I was in bed and suddenly feverish. This is a post op urgency and Steve called the Advice Team who waited for Neurology to reopen after lunch and Evelyn said kindly, now you need to come to ER. The tears flooded me and I could not tell my mother-in-law, whom I love but is not as calm in crisis as the Salt of Barbara. I quietly asked mom to take me, figuring that trips to the ER were going to be in the future and Steve sitting around there for 5 hours was not a good use of time. Barb did not hesitate. I took about 30 minutes to pack a purse for going into the ER and a bag to leave in the car in case I was in there overnight.
I have to admit, I was full of fear about this. The entire way with my mom to Kaiser Morse (might as well go back to Neuro land) I was close to tears, convinced that the tumor had magically come back in 4 days. Mom got a bit distracted in driving and taking the surface streets kind of calmed me down a bit.
We got there and the high temperature walking the 100 ft from the cool parking spot to the car calmed me further. Then I went in for the triage section and my blood pressure was up and the tylenol I had taken had lowered my temp somewhat, I was put in the chairs to wait for the consult (side note, ER had to call up to Neurology because they had my e-file open. Reminded me of trying to write a Medi-Cal policy 6 years ago and getting a colleague out of the darn file!). My mom walked outside to talk to Clark via phone and I used the time (a trick learned from Babs) to write the thank you notes to the primary caregivers that I thought had been truly excellent. Steve and I had picked up Tower Cafe gift cards two days prior. One, because I love it, and 2 because Dr. Williams had eaten breakfast there on July 5th, and the Nurse Vicky lived close by the restaurant. So I took the 5 gift cards and wrote notes to the 2 nurses I was closest to and the 2 Neurologists that were great and of course, Super Williams. Side note: this is a Barbara move, who I swear always wrote to our Irish cousins or some other relative when she had to wait with us in the Dr’s office. Mom came back in and when I asked her to run the cards up to ICU she did not hesitate. But just as she was going they called me in to the exam area.
I met a cool RN II named Cheryl who was about 55 and a confident, experienced gal. She kind of said, yea, I think it is the Dilantin. Minutes later a strange, very large woman showed up to push me into the CT scan. This was a bit odd since no one had mentioned the scan yet and the woman, whose name I missed, had a red vine in her mouth and a couple in her hand. (Ah, not a professional expert). She pushed me, with her red vine into the CT scan area. From there, a technician named David sweetly interviewed me and asked mom to wait just outside. It was all chaotic, the patients being pushed but really, we had only been there about 60 minutes. So it was not that long of a wait. But no one had said what the CT scan had been for. My mom quietly said it could have been a bleeding situation and I had already thought of the magic tumor coming back in 4 days. Either way, for a few short seconds I questioned whether surgery would be necessary and whether it would be something I would choose. For a few short seconds, I actually considered stopping care at that moment rather than dragging Steven further down the road of a possible invalid. The initial surgery had been so amazing, surely that was too much to ask again 5 days later. And then I had Grey’s Anatomy playing in my head and it calmed me down.
From there, David the technician was so impressed by my story, it removed all of my negativity. This is an example of these extraordinary signs I get from people. When I am even slightly low, someone (often one of my cousins or their rocking spouses) sends an email or I talk to a medical professional and it removes all the tension. I could not tell if it was out medical necessity or curiosity at first, then I realized, he just wanted to hear the happy story. He was so overjoyed by it. His enthusiasm simply pulled me out of whatever fear I had. He pushed me back into the consult room and his joy just filled both helped both me and my mom (who was already significantly calmer than I) stay upbeat.
So we waited for the CT scan and the bleeder possibility was still there. And for about 20 minutes, the anxiety returned, and my mom needed to just help me be calm and talk about the planning for the worst. Because for me, even though I have every faith in the best possible situation; even though I truly believe my path is to get in the shape of my life and turn this story into a story about all these people who have given me gifts of medical miracle and the hopes all my family and friends have given me, I do feel as though I need to plan for the year ahead as though it were my last. Not to be negative, just to plan it and be done. Then focus on beating the plan. And for a few moments there, I was in tears that I would not see Tomás be Paco’s age. That the tumor, likely grade 4, could make me a great beater of the odds, but there was still this 1-1.5 year survival average. And as a result, I would never see my baby swim, I would never hear him speak to me in Spanish sentences and I would never have the joy that I had with Paco of dragging Tomás to a penguin colony in the middle of the Argentine Coast. And in my heart, as a stay-at-home mom who has had fabulous part-time work from the two cool outlaws in the Canty group support my mental health the last 5 years has given me a love of being Paco’s primary parent while Steve supported us. To face a future where Tomás would have to go to daycare, and Steve would be a single parent, broke my heart in that moment. Steve was in fact looking into daycare while we were at the hospital. And my mom, just sweetly stood there and told me what she had read, how while it was good to have the plan, I was at the other end of the statistic, the early catch, the surgery, the age and gender. And again, I calmed.
So I asked her if I could nap and she offered to take the thank you cards up to Neurology and took off tackling the task. (She has a good story here that I am making her add!)
The ER Doctor on duty, Edwin Enriquez popped in as well as Cheryl, the cool nurse here and there. They put me at ease. My fever was back up, but Dr. Enriquez did neuro-tests and thought I was doing great. He ordered a Chest XRay to ensure no infection and was waiting to hear back officially from the on call Radiologist. I did have to manually extract milk in there, that was actually kind of funny. Cheryl commented she thought the entire thing was the reaction to the Dilantin and that bendaryl would fix me up. Mom came back and Dr. Edwin came in and checked me again, then waited for the consult from Neuroology on call (now it was after 5). Neurology prescribed a new anti-seizure med and Dr Edwin said, “you are going to take a bunch of benadryl for the next 24 hours.”
Cheryl came in with the benadryl and I took it, then waited for 20 minutes to get cleared to leave. My mom and I had been talking about food most of the afternoon. She had offered to swing by Tower to pick up food to take to Davis. But by the end of of the 3-hour wait, there was food at home. We walked over to the discharge pharmacy and picked up the new RX for the seizures. By now, I felt amazing. I felt the best I had felt in months. As we waited for the RX consult, an African-American man, about 50 was staring at my head. He said, “I like your head” Mom said something about how she thinks it is shaped so well. I joked that my husband wanted to shave my 5-year old’s head, but Paco would not do it in unison. The man asked if my husband was Caucasian. I said, yea, he needs to tan his head if he does it. The man said, that is why. He should, and then it will be tan fast enough. But it won’t be as cool as yours. I still had the staples and the Frankenstein look, but he was making me feel groovy.
Upon talking to the Pharmacist, I asked him to look up the new drug, Keppra, and ensure I could not breastfeed on it. The pc froze and he apologized. I said, “tell me no, it will just be easier.” The papers that came in the bag actually said it in print.
Walking out to the parking lot that I had grown up coming to for every Drs appt. I was so overjoyed. Within one hour of the benadryl, I felt amazing. All the negative, normal, post-op side effects, were not that, they were the reaction to the Dilantin. My face had been swollen normally post-op in the morning, now the swelling was practically gone. Cheryl and Dr. Edwin had both said an arm injury I had would slowly get better as Dilantin was hard on veins.
And I was walking on air. I made mom go to the Chick-Fil-A drive-thru close by to get their good waffle fries on the way back to Davis. My mom, who never eats in the car, actually shared my chicken wrap and the fries. She even sipped my diet lemonade! The joy and celebration of her support brought me back.
Upon arriving back in Davis, my mom wisely took my overloaded mother-in-law back to her house, and Steve just held me tight, and we talked about the boys. My mom said to Judy that she was concerned I was hyper. She was right, but that is a steroid story.