Duke and The Brain
Arriving At Duke
Lucas and I arrived in Durham on Tuesday afternoon, March 9, 2021.
We drove around the downtown area as I told him stories of my time in Durham and at Duke Integrative Medicine while gaining my Integrative Health Coaching training and subsequently coming back to mentor a group in training.
We found one of my favorite restaurants downtown, Luna and ordered to go.
We walked the streets, popped into a cute little grocery to pick up a little chocolate for Dr. Komisarow and Denise for our meeting the next day.
Meeting The Team
We settled into our hotel and readied ourselves for the next day or week. Lucas’s attitude never waivered. Positivity, steadfast resolve to kick this thing and continue building the amazing relationship we had found only months earlier.
Wednesday morning, Lucas had a Covid test at 7:30 followed by a face to face meeting with Dr. Jordan Komisarow and Denise. There we learned a bit more about the rigor of the surgery for Lucas.
Dr. Kamisarow had spoken with us the week prior, on the phone so much of what was said, was review.
The surprises were the possibility of something called SMA. The proximity of the tumor to this area of the brain responsible for a sort of sequencing and initiating movement that carries into the full motor signal meant that if this area were affected, Lucas could have at best some weakness on his left side and at worst be unable to move that side at all. They said that most people regain a lot of what they loose through physical therapy over time.
But what does that mean?
How will Lucas come out of the surgery? Unable to move a whole side? Unable to speak clearly? The answers would have to wait.
Denise described how Lucas would be positioned on his side, strapped down, and attempted to make as comfortable as possible in that position but that position would be maintained through the entire 4-5 hour surgery. A brace like apparatus would be affixed to his neck and head with screws going into his skin down to firmer areas to hold his head in a precise position. A anesthesiology team would be talking to him as would Denise.
He would be put to sleep for a little while, as the Neurosurgical team, consisting of Dr. Komisarow, Dr. Stephen and Dr. someone else as well as Dr. Friedman (google him), created the primary incision in the skin, then the subsequent layers to the scalp and the layers within to the brain.
Once the brain was exposed, the would wake Lucas up and begin asking him questions as well as tasks to do such as moving hand or fist or fingers in certain specific ways.
Denise would be the voice of calm and comfort, offering to do whatever necessary to make him comfortable while at once performing the other part of her job with Dr. Komisarow. She truly was the segue between Dr. and patient.
Both Dr. and NP told Lucas and I that this was not fun. That it would be exhausting. That he would be uncomfortable but not in excruciating pain.
We left the office feeling fully confident in the team. We left the office feeling scared about the unknown.
Preparing and perspective
Lucas and I went back to the hotel to pack his bag again and then to have some lunch. We took time to notice trees, birds, people, feel the warm sun on our faces…to just be.
We drove over the the Center For Living Campus where the Duke Integrative Medicine is.
Lucas said to me, “Lisa, if you hadn’t gone to Duke, you would never have started your own business and needed website help therefore you would not have reached out in exasperation, in the middle of the night, to anyone who might be listening on Thumbtack.
I would not have replied, you would not have chosen me, I would not have helped you with your website then become your prn business consultant.”
“Had you not gone to Duke, you would not have had a group of people to turn to, who in turn got us here to the best of the best….where our journey together, which has only just begun, can continue on, designing, inventing, loving and creating many more chapters as we go.”
The hospital admission was at 2 which meant it happened at 3. We waited in the main lobby with lots of other people, trying to keep our distance…after all we had not come all this way and been so judicious for Covid to play any negative card here!
The maze to the section of the hospital where the neurosurgical patients were, was quite surprising. This section was being built as Covid began. It was to be a pediatric wing. They hastened it’s completion to a vast degree to turn it into a Neuro section with two floors completed, to fully keep separate the Covid patient area.
In room 23b Lucas showered with some special soap then donned a fashionable blue gown and yellow ankle socks. Yes, the ones with the little grippers on top and bottom. He looked quite cute! Little did he know that blue and yellow are the fashion colors of the year! Leave it to Lucas to set the trend!
Anxiety, as you might imagine, was threaded throughout this last day….and only progressed.
I would say most would never know this…but I know Lucas. I see Lucas. His words came faster, his eyes farther away and his questions more.
An IV was begun as well as blood work and various tests.
Food was delivered, vegan hospital food….yummm…..Lucas brought his favorite book, Catch 22, with him…I found a few quotes to read to him…we laughed…It was night now….
Lucas showed me that he could still shake his hips. A little thing between us that we decided to tell Dr. Komisarow this was the gold standard….if he could still wiggle his hips for me after the surgery, all would be well. Then we danced. We danced in room 23b with only our own music in our heads. We laughed, held one another close and just were.
They came to take him for an MRI at 8:30….visiting hours were until 9….I closed the curtains and did not make a peep, hoping I could stay to see him when he returned before I had to leave. Before I had to say goodbye to Lucas.
He came back at 9:30 very chipper, seeming to have conquered something big and made it to the other side. A confidence now were some fear was.
We said goodbye.
Through the night, through the day
We texted and I sent a voice text to say good night. Lucas went down for surgery prep about 5:15 am. and went into surgery about 9 and surgery began around 10:30. I received little text messages that said things like: patient is in the procedure room. the procedure has begun….
All I could do was sit in the hotel room…anxiously waiting, my mind playing out what he was undergoing….I decided to workout with some yoga while envisioning the amazingly difficult situation Lucas was in and enduring….I thought if he was working, I needed to be working too….no comparison.
Such a helpless position…a few miles from the hospital where your significant other has his brain exposed being resected….albeit with an extremely expert team…still.
Dr. Komisarow called about 1:30 and said Lucas was out!! Dr. K said the surgery had gone well.
No surprises except that of the 800 surgeries the NP Denise had done, Lucas was in the top 5 for keeping them guessing as to what was going to come out of his mouth. He had them ALL laughing, the anesthesiology team, the neurosurgical team, the radiological team.
He had full function and movement of everything as of that moment in the OR. This meant there was a very good chance that while he may lose function of movement due to swelling and or scarring, that the chances of those movement coming back fully was higher. He would likely need physical therapy and the next 24 hours would be the most crucial to tell if the SMA syndrome would be a factor.
I rushed to the hospital, going through all the check points to find his ICU room. I expected to find him still sleepy or groggy.
He was fully awake and said, “There’s my Lisa”. I came around the bed and sat by him….we both teared up. There simply were not words.
I gently caressed his arm, surveying him. His head was completely shrouded in white gauze wrapped around like a large turban, eyelids were red as were his cheeks. The dark under his eyes could not usurp those blue eyes and that classic Lucas smile. Those burst through, triumphantly stating that he had made it!!! And he was moving, everywhere. He could move everything!
He was thoroughly exhausted and at the same time filled with adrenalin for having conquered perhaps the largest mountain of his time.
He recounted what he experienced.
Falling asleep after being in prep for so many hours and having the sweetest dreams….waking up in panic as his brain was open, drapes were all around, pinned like an insect, voices and machines were making unfamiliar noises and though he knew this was going to be the case, it was none the less terrifying.
Denise was talking to him, which was calming and reassuring…
The team set up fans when he got too hot as the heat from the cutting made his whole body heat up. They lifted the covers to fan him, fed him one tiny ice cube at a time, not enough to quench thirst but to help cool a little….then came the jokes.
Jokes (Lucas’ comic strip)
In the consult they relayed that it would take him a while to reorient upon first waking up…as he woke up he said,”I’m reorienting.” which cracked the anesthesiology team up, and “remember, I like to control stuff.”
Dr. Gupta, the anesthesiologist, shared with Lucas that he may feel discouraged as Dr. K was probing around the brain looking for where to shut down movement etc. To not be alarmed when his hand could not move. This helped immensely.
Lucas explained how he noticed they seemed bored, like they had done this many times, but at the same time excited about helping him and the individual nuances of his case. The whole team loved that observation.
Throughout the procedure he continued to relay stories of jiu jitsu, how we met, 3 times, and talked about our latest agreement for hotel pooping he cleverly named, “bathrooming.”
He told Dr. Komisarow that his eyebrows looked like Eugene Levy’s. Dr. K was a bit offended…. 😉 but said his dad used to make comments regarding his eyebrows. Someone in the room asked if his dad was unapproving of him. Lucas chimed in and said, “How do you think he got to be a brain surgeon? Critical nature like that makes one tough and able to endure the rigors required of a brain surgeon.” Dr. K said to the contrary, that his dad was very supportive and if he had murdered someone his dad would have said, “well, I bet you murdered them well”.
He talked about being in room 23 which was Michael Jordan’s number. Gupta asked which one, Chicago or UNC? Lucas said, Netflix special M.J. on bringing a team together called, The Last Dance; bringing the best out of the members of a team. He related number 23 to the team that was witness to the very essence of Lucas. They all acknowledged that.
What Are You Doing Now?
Lucas asked what was happening along during the procedure, and the procedure would be relayed…sometimes Lucas would say, so are you doing ____ now? To which Dr. K. said after he finished and the team was stitching up the layers, “you must have done a lot of research on this procedure or googling.”
Lucas replied that he had been on a strict no google diet and that Lisa had done some research. Dr. K. said, “It sounds like you looked it up on wikipedia.” To which Lucas said no… Dr. K. sat down in Denise’s chair, got out his phone and googled, wikipedia brain surgery. Then said, “Who wrote this!?”
At this time the stitching was being done for all the layers that had been opened to expose the brain…Lucas said the layers were like a pastrami sandwich…the team hesitantly said, “I guess?!” “Oh, so are you putting the dog bone bolts or screws in?”
You know, just your average, ordinary brain surgery talk.
Oh boy….this was my first inkling that Dr. K left me and the rest of us a little present…Lucas’s humor unleashed!
The whole point is that Lucas used humor to deal with one of the most difficult situations any of us can possibly imagine…
As he relayed all of this to me, I was quite frankly in awe. That’s all. Awe. He is sublimely amazing. I realize that’s not a thing…but he just made it one.
One little detail, before the actual surgical procedure began, Dr. K. told Lucas he would either have a circle or an L for his incision site. After the surgery Lucas asked which shape incision he was bestowed with. “An L”, Dr. K said. To which Lucas replied, “An L. For Lucas and Lisa!”
Steps Toward Recovery
In the ICU, little sleep is found by any patient at any time. There are people scurrying around constantly, coming to check….necessary, good, but no sleep. Exhaustion, overstimulation in the most epic sense of the word, had left Lucas thoroughly spent… yet it was, 6 hours after coming out of brain surgery constantly and conscientiously checking to see if feet moved, toes wiggled, hands held mine and fingers adjusted, relieved and amazed at the movement.
And then he said he wanted to walk me out….visiting hours were over….He had not walked yet.
With nurse Clara’s help, and the meds on board, Lucas walked me to the ICU entrance.
Taking one step at a time, and none for granted
Friday morning Lucas called and said they were going to release him!!! I went to a WalMart to fetch a wedge pillow, a small pillow, a regular size pillow and some pillow cases to have at the hotel in the room to make it as hygienic and comfortable as I possibly could.
Some medications were needed upon release which were to be picked up at the cancer center….I had to double park in the valet lane and leave Lucas in the car, get scanned and covid checked in to get to the pharmacy….while seriously anxious about leaving Lucas in the car. They rushed the filling of the prescriptions as much as possible and then I was back to my person!
We made it to the hotel and I’ll relay that every bump in the road is magnified when your attention is on trying not to jostle some precious cargo!
He walked with me up to our sixth floor room, no stairs, elevators!I got him situated in the bed and he began to sleep, for the first time in days….
Simply incredible!!! And no SMA syndrome symptoms yet…
I had food for us in the room from Whole Foods, thankfully only a little bit away so we could have some healthy food while here.
I mapped out all the meds, times, days for step down protocol of some, the prn of others and how often they can be had etc. I set alarms in my phone as to times and by the next day we had a schedule on the 3’s and 9’s….Lucas only took one Oxy outside the hospital, relying on Tylenol and his own resolve to live his best life in every moment.
Nothing is known about the specifics of the tumor yet.
The pathologist in the surgery room said it appeared to be consistent with a low grade glioma. The tumor has to be sent to Mayo for molecular, genetic studies to see precisely what best next steps are.
That night was a bit more restful until the 3am waking. There was lots of racing through Lucas’s mind, reliving the panic at waking up having his brain exposed. A couple of hours of breathing and soothing touch allowed sleep to happen again.
The next day, we took our time getting up. We drove to a place called Happy + Hale who had great fresh foods. I parked right outside and went in to get the food. In chatting with the person behind the counter, Henry, I shared that we were from MO and that my person had just come out of brain surgery, 24 hours ago….he gave our whole fruit smoothies to us gratis!
That was our big outing and it was successful. I still shake my head in amazement. It is truly hard to comprehend what Lucas has been through and continues to go through….but
Wound Cleaning (It’s “flumpy”)
That afternoon, as I removed the bandages the hospital had placed over his incision/wound site, I became very, very grounded by what was staring me in the face. What he had just experienced. The reality is that Lucas can push through in such a way that you can forget a little and maybe we both want to, a little. This, before me, reinforced the why’s of my being proactive, protective, cautious with every move….rather be a bit more of those than in any way careless.
His incision site is very large. When they said an L they meant an L! Honestly, as I cleaned the site with the solution they had given without very clear instructions on exactly how to clean the site or how much of this stuff to use, I started to become warm and then sick to my stomach.
Look, I am a person who can and has handled a lot. In crisis, I am calm. When it comes to gross stuff, I just do it. My mind/body response was surprising to me and I was not sure I was responding to what I was seeing or if I was getting sick for some other reason.
The way it moved, the scalp and incision and underlying tissue, when I just so gingerly touched it, pulled me right into the middle of it all and it’s magnitude.
The Path Not Taken
The way it could have gone differently at any step, from the neurosurgeon in Springfield who didn’t know if they had the equipment and told him that a Covid vaccine was ok even as he had just two days prior put him on steroids, to all the people who reached out to us from the NBHWC community, to John, to Tammy, to Denise, to Dr. K, to Jesse and Dancy, to Lucas’s parents, to our friends and our family and the medical team entire….at any juncture things could have gone differently…and they did not.
He felt much better having that cleaned and dressed. He slept a while, his pain mostly managed.
He and I decided we needed a few things from a grocery store. We went and walked a couple aisles….this was a lot of stimulation.
We came back and he did some stretching and some breathing. Sleep came nicely until 3am.
Once again those terrors of what had transpired just two days before raced through his mind, finding it almost impossible to move out of the loop.
Processing this is a LOT.
We did some body scan work and some breath work together. He continued this on his own for the next two hours and finally felt he had made it over the top. He could see clearly the tools he needed to calm himself and could move forward from here, not afraid to sleep.
His energy is up when he first wakes and then, as would be expected, he is profoundly tired…but wants to press on. We agreed that I would be a gentle reminder and a nudge for rest….
We have toggled between lots of quiet and rest in the hotel, me writing this today, him breathing, meditating or sleeping, and little outings to fetch food or supplies. There is a story to come of some croissant “babies” and other anecdotes at some point.
Last night was the best yet. Stepped down on the Tylenol and pain is still managed. He was able to fall back asleep after our 3am med alarm.
I will clean his wound when he wakes up and we will venture out to pick up some food and take an hour drive to assess how far we think we may be able to drive tomorrow.
If all goes well we will begin our return trip to Springfield tomorrow. I anticipate it taking about 4 days.
If you have skipped all my rambling details and gotten down to the nuts and bolts, here it is; Lucas is a profound role model for how to be positive, hopeful, genuine, acutely aware of the good in the world, hard working, generous and just the best kind of human being alive. I continue to be in awe.