Tuesday, July 27, 2010

25 Years

Today is our 25th anniversary, so Happy Anniversary Carol. Marrying you is the best thing I've ever done. We're in Mammoth Lakes this week celebrating our anniversary, Carol's dad's birthday, Carol's parents 60th Anniversary and just being together with family. By coincidence more than design, Carol and I spent our honeymoon in Mammoth 25 years ago:

July 1985

At the Mono Lake Overlook July 2010

As for my recovery from surgery, things are going as well as could be expected. I've been continuing to feel good most of the time and there has been no sign of the symptoms I had been having before. The head is still a little sore as it heals, but nothing too bad. I've had a few times when I get kind of shaky and feel sort of nervous. I think this is a side effect of the meds, but we're keeping an eye on it. I exchanged emails with my neurologist last week and he said while people generally stay on anti-seizure meds for about a year after surgery like mine, since my case is unusual he thinks we can try tapering off the meds after about three months. So, that puts the test sometime in early October. We won't really know until then how successful the surgery was. I remain optimistic. I have a surgery follow-up appointment with Dr X next Monday. I presume he will determine how well I'm doing and decide if I can resume driving and weather I'll be ready to go back to work the following week. I'm looking forward to this appointment because I have a few more questions I would like to ask about the surgery.

Last week Carol shaved my head because I had to see how I looked completely bald. Here it is:

Most people seem to like it except Gayle. Her comment was simply "don't do that again". And I probably won't . It's a lot of work! Especially with hair as thick and fast-growing as mine. I think I will stick with the short buzz until the weather starts to cool off in the fall.

On Friday the staples came out at my local doctor's office. And despite how painful the staples look, I could hardly feel them coming out.

I decided to commemorate this event in my life with a tattoo. I had this done last week in Sacramento at the same place that did my first one:

Looking back now on having my head opened, it all seems a bit surreal. But life is slowly getting back to normal. I've been visiting with friends and family and I've been getting some new photographs done. Here is a self-portrait that Carol helped me with last friday:

And here are a couple of recent portraits of Gayle and Sarah:

One more day at a time. And today is a day to celebrate 25 years with Carol. I can't imagine what life would have been like with anyone else by my side.

Thursday, July 15, 2010

No Place Like Home

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.

Friday, July 9, 2010

A Change of Mind

It's Friday night, I'm out of surgery and in recovery in the ICU.  The doctors had more extensive plans than we'd expected and I ended up having a 6 hour procedure called a craniotomy.  They removed part of my skull, removed the lesion from the surface of my brain and then placed electrical probes on my brain to measure and look for unusual brain activity.  They found a couple places under the lesion where this unusual activity was apparent and so removed part of the temporal lobe in that area.  But its okay, I wasn't using that part anyway.  They then replaced the portion of the skull they removed and attached it with titanium screws, covered the hole with titanium mesh and sewed me back up.  We're hopeful that this testing and procedure will put an end to the symptoms I've been having for the last several months.  Sometime tomorrow I'll be moving to a regular room and I'll be here until Monday or Tuesday.  So that's it for now.  Thanks again for all the love and support from so many of you kind people.  I will never forget it and this whole experience has changed my life in significant ways.

Wednesday, July 7, 2010

Happy Birthdays.

Today was Carol's birthday and Saturday is Gayle's 20th. And she says that makes her feel old. Puh-leeez!!! Bad timing on my part to put a little brain surgery in between them, but so be it. Tonight we went out for sushi again at our favorite local spot to celebrate. We came home and had one last chance to relax on the deck before we head to San Francisco tomorrow. Then the mosquitoes chased us back inside... The fireworks are from July 4th, of course, but are used here in celebration of two important birthdays.

I didn't know what to get Carol for her birthday this year, and frankly, it's been hard to focus on anything other than Friday lately. So, on impulse, I got her an iPad. I blame my Apple-loving buddies for egging me on. It is a fun little indulgence and I just hope she grows to like it. If not, I guess it'll be my new iPad...

Since I've not had time or opportunity to shop for Gayle, she's going to get one of my cool old film cameras for her birthday. She's been having fun going retro this summer - vinyl records and film cameras.

These gifts that we give are fun tokens to remind us of our love and connections with those we care about. But, and I risk falling into a deep cliche, the only real gift we have to share is our time together. And you find out who loves you most and who really cares when times are hard. For me, times have never been harder than now. On one hand, I know several people who have been through much tougher challenges in their lives than mine, so I feel like I should just suck it up. On the other hand, what's coming frightens me like nothing else in my life. There, I said it. I'm fucking scared. In about 30 hours from now, somebody's going to cut open my head and try to fix what's wrong and sew me back up again. I've put my trust in people who I barely know based on their education and experience, and I can only hope that that's enough. And yes, I am fucking scared.

One of my friends told me that there are lessons to be learned from hard times, and she is right. This ordeal has definitely brought Carol and I closer together than we've been in a long time for that I am only grateful. Another friend said that it's times like this that you find our who your true friends are because they will stand beside you.  And I've discovered that I have friends standing beside me all over the world who honestly care and are sending their prayers, Karma, good thoughts and best wishes for a successful surgery and quick recovery. I am humbled every day as messages come in from  people I know well and people I haven't heard from in years. I've tried my best to thank each one of you directly, but let me say thank you again to all of you now. Believe me, it helps more than you know. As I said in my first post, I am a lucky man.

So, tomorrow afternoon we head to San Francisco where we are planning to catch the Birth of the Impressionists exhibit at the DeYoung Museum. Then we will have dinner with some great friends who have offered their home for us to stay through the duration. Carol's sister Joyce is coming up from Atascadero for some moral support in the waiting room on Friday. She will drop us off at the hospital at 6 am, then come back to keep Carol company when my procedure starts at 7:30. I should be into recovery by noon. My surgeon said that if all goes well, I should be ready to go home in  two or three days, so I hope to be back in Hangtown by Monday. 

At least that's the plan as I know it tonight. One of us will post something to the blog on Friday afternoon or evening. Perhaps Carol will do it with her new iPad.


Friday, July 2, 2010

Independence Day

The change in medication was a good choice, I think. The new one seems much better than the old one. I still feel a little tired, but not nearly as much as before, and it seems to be doing as good a job or better at suppressing my symptoms. Better life through chemistry! Speaking of chemistry, here is a picture Sarah made of me a few days ago. I don't really like being on this side of the camera, but I am pretty happy with this one. Thanks, Sarah!
So here we are with one week to go. Time is going faster now - counting down by days instead of weeks. How different a path we're on than we had expected this year. In another of life's little ironies, our original plan for 2010 was to land in Scotland on July 9. Instead I will be having brain surgery on that very day. F-ing BRAIN SURGERY. Those are some big words. Most people get to live their whole lives without having to do it, so I guess that makes me special. Like a friend told me tonight, at least I should have a good story to tell from the experience. Now that the day is getting closer, the reality is starting to sink in... Hey, I don't even like going to the dentist and next Friday I'm going to the NEUROSURGEON.

We're going to spend the July 4th weekend at home - just relax and keep it low key. We have some friends coming by for a little BBQ on Sunday, then we'll probably head over and park the convertible near the fairgrounds to watch the fireworks. Or maybe we'll just watch them from the deck... Independence Day for me this year is July 9.