We got home Monday afternoon, a day earlier than the doctors had said I would. I've felt surprisingly good since the surgery with relatively little pain (considering) and the brain seems to be doing it's thing as it should. Despite feeling OK, I've been instructed by the doctors that it takes TIME for the brain to heal after being assaulted the way it was and I just have to be patient and not push ahead too quickly. No driving, no lifting greater than 5 lbs, etc. I'm still taking the anti-seizure meds and some steroids that help keep swelling of the brain down during healing. I've got some pain meds, too but am only using them sparingly. The first night home I slept well, the second, not so much, then last night was good. I will be off work for at least a month. So for the first few days home we've been keeping it mostly low key but getting in some picture making to take advantage of my new look. Here are Gayle's contributions:
And here are Sarah's:
Carol buzzed the rest of my hair off today, so there will be more pictures soon enough.
My favorite mother-in-law Wena arrived from L.A. yesterday to visit and help out for a few days. It's great to have her company and I know Carol appreciates the help around the house. After going through the surgery, I am very happy to see familiar faces again. They are signs that my future will soon resemble my past, which is what the ultimate outcome of this experience will be.
The Journey
It's now Thursday, one week since we started our journey to San Francisco and back to the life I had before. We made a visit to the DeYoung Museum to see the Birth of Impressionism exhibit. It was good, I suppose, but I was a bit distracted.
Thursday evening we had a delicious mediterranean dinner with our friends and San Francisco hosts The Goloubows. Friday morning Carol and I were up at 5:00 to the rude alarm on my iPhone and waiting for the doors to open at UCSF Admissions by 6:00.
After signing the necessary forms, we were directed to Surgical Waiting from where we were immediately delivered to Pre-op. Here I donned the standard-issue patient gown and waited as patiently as possible for the doctors to arrive.
The first was an anesthesiology resident whose job it was to get the IVs in my hands and arms. Well, let's just say he needs more practice. After poking several times in one hand, he tried the other, then went back to the first. In the mean time a surgical resident showed up to discuss the surgical procedure itself. This was the first time we heard the word
craniotomy. When he realized this was news to us, he went to discuss things with Dr X. About then the chief anesthesiologist showed up and got the IV in easily on his first try. He was a tall, pleasant man with (I think) a German accent. He noticed my black fingernails and when I described my use of silver nitrate for photography we started talking cameras and darkrooms - a good distraction. The surgical resident soon returned and we continued the discussion of the craniotomy. Dr X and Dr Y (my neurosurgeon and neurologist) had decided that since I seemed to be responding to the anti-siezure meds, it would be a good idea to open up part of my skull and do some electrical testing on the surface of my brain to look for seizure-type activity that did not show up on the EEG. As you would expect, the testing is much more sensitive directly on the brain than it is through a thick skull and an Afro. But, this meant I was in for a 6-hour procedure rather than a 3-hour procedure. Scary yes, but it made complete sense to me. I was soon ready for surgery and was being wheeled off to the OR. Carol and I kissed goodbye at the elevator and I was on my way. At that point, all I could think of is how hard the next six hours were going to be for her. I was just hoping I would come out the other side of the surgery OK so we would see each other again and the agony of her waiting would be over. Luckily her sister Joyce was there to keep her company. They walked, talked, drank coffee and received hourly updates from the OR.
As I arrived, the OR was a swirl of activity as all the team members were getting their stuff ready but they took a moment to greet me as I was wheeled in. They got me up on the table and the kind anesthesiologist began to slowly put me under. The last thing I remember is looking at the clock and it was shortly after 8 am. Then, seemingly immediately, I remember the breathing tube being removed as they woke me up. In my anesthetized haze it was as if no time had passed and my first questions were "what time is it?" and "how did it go?" Well it was shortly after 2:00 pm and I was told everything went very well.
I was then taken to the Neuro ICU where I was administered anti-nausea meds and some morphine by IV. They brought Carol in to see me about 2:30 and I am sure I was still too groggy to tell her how happy I was to see her.
The anesthesia was mostly gone by about 4 and this is about when Gayle and Sarah showed up. By 5:00 I was brought some of the fine hospital cuisine and was able to keep it down without too much effort. The girls left about 7:00 to go have a fine meal at the Goloubow's. Carol and Gayle came back about 9 for another visit. This is when the last blog post was made. I dictated while Carol typed. Always teamwork!
My pathologist/photographer friend Tony showed up while the girls were gone and we had a good long talk about the past few months and what it's like to go through something like this. Tony was in a pretty bad motorcycle accident a few years back and knows as much about being a patient as he does about being a doctor. It was great to have his company throughout this process and I look forward to a visit here at home where we can make some photographs and good food together. Meet Tony (as I was being discharged on Monday):
This is Bonnie. She was one of the wonderful ICU nurses that took such great care of me Friday night. The picture was taken Sunday night after finding out I was going home on Monday and Carol and I were strolling the halls getting me some needed practice walking. All of the ICU nurses I met were fantastic, caring people with great attitudes. It made that first night so much easier than it could have been. In another strange irony, one of the ICU nurses was Scottish. When I told her I was supposed to be in Scotland on this day rather than in surgery, we had lots to talk about. She said that since I couldn't get to Scotland, they brought Scotland to me. Indeed...
Late Saturday morning I moved from the ICU to a regular room. A couple of the ICU nurses were surprised as I walked out of my room rather than riding a wheel chair. I was feeling well enough on my feet and Courtney was holding my arm, so down a couple of hallways and into room 818 for the duration. My good buddy Ron Goloubow showed up about noon and we talked and watched the World Cup match on the Spanish language station. Since it was Gayle's birthday, Carol and the girls went shopping at the nearby Galleria. It's amazing how much they can collect in just few hours. By mid-afternoon several more visitors arrived including my brother-in-law Roy who brought my mom down from Sonoma. Carol and the girls returned, loot in hand, including Gayle's roommate Molly (one of my favorite photographic subjects). Molly has a great/odd sense of humor and brought me a balloon from the gift shop that said "It's a Boy!" She always makes me laugh. Ron's wife Chris and one or more of their kids arrived as did my good friend photographer Mark Citret from Daly City. Also Lee, Carol's roommate from college who lives in Pacifica. Yeah, it was a party in Room 818. The visitors trickled out through the afternoon and Carol left about 8 as visiting hours ended.
I continued to feel OK and always answered correctly when the nurses asked me where I was, what the date was, my name etc. I was able to get up and get around on my own and all my vital signs were good. Some time during the day a surgical resident came to see me and said I was doing so well there was a good chance I could go home on Monday, but that was ultimately up to Dr X.
Saturday night was pretty uneventful although my roommate was having a hard time, so I didn't get too much sleep. It didn't matter. I was feeling good and just kept thinking about being back in my own bed by Monday night. I continued to be surprised at how good I felt, then I would touch the row of staples holding my scalp together and it became all too real again. If you haven't clicked the link to craniotomy, basically what they did was put my skull in a clamp, make a large incision in my scalp to expose my skull, cut out a piece of my skull about 1-1/2 inches in diameter and probe the surface of my brain with electrodes. The neurologist found two places adjacent to the lesion where potential seizure activity was occurring and Dr X removed two small pieces of my temporal lobe. He then replaced the skull part, attaching it with titanium screws, and covered the pre-existing hole in my skull with titanium mesh. Then, closed the scalp with 46 staples. Just another day at work for one of the smart kids.
Sunday Carol and the girls showed up about 11 and we watched the World Cup final, again on the Spanish station, which is the best way to watch futbol. Gayle had to leave about 12:30 to go look at a potential rental house in Santa Cruz, so she missed the exciting final goooooooooooool! Most of the visitors from Saturday returned Sunday afternoon, so we moved the party down the hall to an empty waiting room. Good friends and musicians Gayle and Bob from Roseville also showed up since they had a gig that morning in San Rafael. It was great to see so many familiar faces. After the visitors left, Carol and I returned to my room. Some time late Sunday afternoon Dr X showed up. I looked at him and shaking his hand I said "my hero!" I asked him a few more details about the surgery and when would I be going home. He said that based on all the reports he read from the nurses and residents he didn't see any reason why I couldn't go home on Monday. Yes!! I was so happy/relieved I can't even tell you. I shook his hand again and thanked him sincerely for his great care. We grabbed a quick snapshot. I'm sorry it's a little fuzzy and my eyes are closed, but meet Dr X:
No matter how long I live I will never forget his face or the sound of his voice.
Thank you Dr X!
So now it was just waiting time until Monday morning arrived and I could get through the discharge process. A resident came to see me early, which was a good sign since it meant my orders could be started and the process put into motion. By noon I was being wheeled out of the front doors of UCSF (
ranked no. 7 of all the hospitals in the country, by the way). In what looks like a bizarre vacation photograph, here are Carol, Tony and I shortly before Carol drove the Kouklis family back to Placerville.
The Future
So, now what? Am I cured? I'm not sure is the answer to both of these questions. The next few weeks activity will be minimized to let healing take place. I will have follow up appointments with both Dr X and Dr Y. I am assuming I will stay on the anti-seizure meds until I am fully healed - perhaps 1 to 2 months. Then I will be tapered off the meds and wait to see if my symptoms return. For now, I couldn't be happier that the surgery is behind me and I feel as good as I do. There is no doubt in my mind that my journey was made easier by all of you who have written to both Carol and I expressing your love, thoughts, prayers and good Karma. I give a lot of credit to the skilled hands of Dr X, but I am also certain that there is strength in our connectedness in this world and I feel lucky to have each of you be a part of mine.
And Carol, if I didn't say it when you came into the ICU and I was still in a haze, I love you now more than ever. I am a lucky man.
