I am new to blogging! I have never even read anyone's blog, I don't tweet, my FB is mostly just to promote what I am doing projessionally. I do not want to announce my brain cancer on social media. Friends and family want updates so I started this blog.
On this "back stories" page I will just catch everyone up on my current health situation and if anyone ever refers to it a a "journey" I will be forced to block sleep delete unfollow / unblog you.
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I thought I'd be really into blogging, into setting up this page, and get right into it while I was at Shirly Ryan. I made some progress, but my focus and energy for it was just not there. I'll try to backtrack, tell the good stories here, and then blog in real time.
The Back Stories
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The Symptoms
I decided to have a BBQ and invite friends over on July 31st. I love to throw a party and had not since pre pandemic. That morning I stopped at Binny's ( I made a delicious Aperol Spritz Punch with Cynar - needed to pick up the Cynar - learned recipe from fave Matchbox bartender shout out to Trinidad). After Binney's I went to Super Target. I started walking in from the parking lot and mid stride my right leg seized up, froze in place while bent up, and felt totally numb and paralyzed. I was to balance on the left leg and had to do a sort of Karate kid crane kick stance as I hopped over to the cart return, and used a cart as a walker to get back to my car to sit down and regroup. Was I having a stroke? Was it the long drive to Door County we dropped the kid off at camp and drove there and back in one day the week before - was that causing a muscle strain? My leg started coming back into use with a pins and needles feeling, I pounded on it, slapped it, shook it off and was able to limp into Target to do my shopping.... still using the cart for support.
I proceeded to get party supplies, drove home, but my right leg still felt odd and numb (driving home was not good idea but I had a party to throw). I made the awesome punch, had a great time... but the leg definitely felt odd, and still a little numb.
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I emailed my Doctor at Rush through the My Chart system on Monday and explained what happened and she said it sounded maybe like a pinched nerve and that I should see a Physiologist. I was convinced it was the fact that we drove Cole up to camp in Door County WI the weekend prior and I must have strained / pulled / pinched that psoas hip muscle. After seeing the Physiologist Tuesday, August 3, he eliminated the pinched nerve theory by having me perform some actions and diagnosed it as a severe muscle spasm (likely caused by that drive). I was sent home with muscle relaxers and heavy duty ibuprofen and had a virtual follow up visit scheduled 2 weeks later to check in.
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Meanwhile at work we were getting prepared for our first special event since 2019 and Covid: Chicago Brewing District's Dancing in the Streets. I worked from my couch at home Wednesday August 7th, but I really needed to get in to the office to get more done. Thursday I had a hair appointment with Cheryl at Chicago Avenue Salon in the AM (have to get those roots done before seeing everyone at the event!). I tried to drive there my self that morning but turned around and came back to park in garage. My leg and foot were too numb it was unsafe for me to drive. Henry drove me to the salon and I said I felt fine to limp down to the office afterwards. Muscle spasms don't require total rest and I had shit to do!
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My hair looked great as I limped down to my office from the salon. I proceeded to limp around the office getting supplies organized and prepared for Dancing in the Streets (DITs). My leg started to feel tired and stiff so I sat at my desk to finish up my event operations spreadsheet and then my leg seized up completely again (like it did in the Target lot).
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Sara Bemer (friend and employee) got me food and insisted on driving me home even though I was insisting on just crawling into an Uber. Henry had a big gig with the Ides of March so Sara saw me into the house, set me up on the couch with the food and drink, walked Sam our dog and bid me goodbye. What a great gal :) I had my cell and my food supply and just stretched out on couch to watch a movie. An hour or so later I started getting the pins and needles feeling again but this time it was traveling up my leg, into my hip, then my stomach, chest, up into my neck, jaw and throat. I was getting worried and started to call 911 then chickened out and hung up... maybe it would go away?? I was going to wait... but 911 called me back to check and see if everything was actually ok. I explained the situation and they said they were going to send paramedics over to check me out.
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The ambulance arrived shortly thereafter and they took me into the ambulance to check my vitals etc and even though the pins and needles feeling subsided, suggested I go to the emergency room just to get checked out more thoroughly. I agreed and we went to Rush Oak Park Hospital since it is close by and my primary Doctor is affiliated.
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The Emergency Room
Once checked in at the emergency room and I was just waiting. I had texted and called Henry, told him to stay and finish gig... I was safe at a hospital and my symptoms that were up above the leg in chest and neck had subsided. It was just a tingly numb leg again. They were playing HGTV on the waiting room TV and I felt fine just waiting and insisted he should come get me after the gig. Well... I waited about 4 hours and still did not get in. Henry showed up and we waited even longer... by midnight I said fuck this let's go I will just follow up with the physiologist... we were out the first set of sliding doors about to totally exit when I finally heard my name called (just after midnight). Ugh so I waited that long we turned around came back in and I finally saw a Doctor. The doc was great, Dr Duggan? I believe - he said well you waited this long, we are going to run a week's worth of tests to eliminate anything that could kill you. I had xrays, ultra sounds, CT scan, and all kinds of tests done. By this time it was early AM on Friday and the Doctor came in and said listen, we found what looks like a mass in your left brain on the CT scan - your left brain controls your right body. I want to admit you right away and schedule an MRI to get a better look at it. ( Huh whaaat?
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Whoa. Wait... what? Was what I was thinking... Huh? A mass?! MY good friend Kirsten, my original partner in idao gallery had brain cancer and a mass... died about 12 years prior - what the hell?
Rush Oak Park Stay
I was admitted and sent up to a shared room. That's right... shared... there was an elderly lady in there snoring and farting just behind a thin curtain. When she woke up she was a yeller and had diarrhea in a bed pan several times. She was causing quite a smelly ruckus. Meanwhile our event ops team is starting to call and text me with Qs and issues as they are setting up for DITs. Since the old farting lady was so loud I had no problem just full on voice recognition texting people to solve event set up ops issues all morning from my hospital bed. I finally let the ops crew know that I would not be there at 8am as planned and that Sara was going to come early with some checks for distributors and deliveries etc...
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My staff was fantastic and my spreadsheet was so elaborately detailed that I was able to smoothly run event set up from my hospital bed. Meanwhile farting old lady is trying to get up and yelling at nurses, this one nurse came in to yell at her not to move and to behave and she yelled at the nurse "you are aggressive!" I yelled back "Takes one to know one!" Good times.
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A very kind hearted nurse tried to serve me french toast while another bed pan of diarrhea went past me. Um no thanks I am not hungry. The nurse saw my grossed out face plus my diagnosis and had mercy on me and switched me to a private room. Thank Jah! I continued to boss people around on the DITs site in private with less smelliness to make sure everything got set up correctly. I missed breakfast service and the nurse brought me a giant warm chocolate chip cookie from the cafeteria with a good coffee (so nice). Man do I have a new respect for what nurses have to deal with.
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Someone handed me a zerox copy pamplet about glioblastoma multiforme tumors which is what they all thought mine looked like... I made the mistake of googling it after reading up on the basics provided and it was scary information to process. That was my first good cry... I called my mom to let her know what was happening and lost it... cried hard.
I was visited by nurses, neurologists, social workers, a rabbi, physical therapists, residents... lots of tests done. It was determined that I would have a conscious craniotomy to remove the tumor at Rush downtown with Dr. Lorenzo Munoz. Loved what I saw and read about Munoz so... I was going along with the plan. They were going to transport me to Rush downtown right away for a more forensic MRI and I would be scheduled for surgery on Monday, August 9th. The surgery ended up being rescheduled for Friday, August 13th due to some more urgent cases arising for the surgeon.
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The Conscious Craniotomy was a trip!
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