Tuesday, November 23, 2010

Glimpsing the Rainbow

"Nobody ever had a rainbow baby, until he had the rain..."
-Jim Croce

I've loved Jim Croce's music since I was about 12. He was a great singer/songwriter who really knew how to use words. I've just recently started to listen to Big Jim again and can only wonder what he would have done with his life had it not been cut short at 30.

It's been about two months since my last post. It's been a frustrating and finally rewarding time. Lots of rain and not too many rainbows...

As of one month ago I am now off of the anti-seizure medication Tegretol, which is a good thing. In the mean time I've been battling some episodes of anxiety and insomnia. Not exactly panic attacks, but intense anxiety, especially at night after I go to bed. I'm not sure if they are related to coming off Tegretol or are related to symptoms I was having prior to surgery (I don't think this is the case) or perhaps some PTSD-ish stuff. Whatever is causing them, they're not fun. Also, I feel like my balance is off. Not exactly dizzy, but just a little off at times.

Initially my GP prescribed Paxil to help with the anxiety. I picked up my prescription, then decided not to take it after reading that coming off of Paxil can be difficult for some people. Because the anxiety wasn't happening every day, but maybe just a couple times a week, I asked if there was something I could take as-needed rather than a daily med like Paxil. So, the GP gave me Xanax instead. Xanax definitely calms my nerves enough to let me sleep when the anxiety gets bad. I've taken it about 6 times in the last month or so. It seems like the episodes are slowly becoming less frequent or less intense as time goes by. Or maybe I'm just learning how to manage it.

Whatever is going on, I am clearly not 100% back to the good old me. And perhaps this is the new me and I won't ever feel the way I did before all this started nearly a year ago. I feel different. It can be difficult to concentrate and sometimes I can't come up with the words I'm looking for. I also feel like it takes more effort to think and solve problems.  If this is the new me, I'm having a hard time accepting it. I suppose only time will tell and I'll just have to wait and see what the future brings.

Monitor Pass, July 2010
On a brighter note, the creative part of my life is slowly moving forward. In October I taught a planum printing workshop at my home to a small group of very kind people. That was a good warm-up for a 4-day workshop I taught in Yosemite in early November. The Yosemite workshop was fantastic. My dear friend David Eisenlord came out from Minnesota to help me with the workshop. It was great having him there. It's nice to have such good friends who "have your back" when you need it. The six students in the class were fun and enthusiastic. And they were kind enough to cut me some slack when I needed it. One of them happened to be a massage therapist, and that didn't hurt either. Well it did, but in a good way.

El Capitan, Yosemite

Bridal Veil Falls

El Capitan

Bridal Veil Falls

So, on I go. Always thankful to have my beautiful family who are there to prop me up when I can't stand alone and loving me, even if I'm not quite the same "me" that I used to be. And thankful for my friends who show their friendship in so many ways. To my friends that are going through your own health and medical issues, hang in there and don't be afraid to ask for help. I don't think I'll ever be able to repay all the kindness that has been sent my way, but I will try.

Happy Thanksgiving.

I am a lucky man.

Tuesday, September 21, 2010

Coming in for a Landing

Delicate Instrument Handle With Care

Last week I was given the OK by my neurologist to start tapering off the anti-seizure medication carbamazepine (aka Tegretol). I should be done with it by early October. I'm hoping once it is out of my system I'll feel better - less tired, more energy, etc. And I hope I will find that I no longer need it. As an added bonus, alcohol and extended exposure to sunshine are back on the table, two things I've had to avoid while on this drug. Of course, nothing comes without a price. Monday morning I woke up feeling VERY dizzy. I stayed home from work in the morning and spent a few hours watching Pawn Stars and American Pickers on The History Channel, two recently acquired guilty pleasures. It turns out that coming off these brain-altering medications can cause some of the same side-effects that occur when starting the meds. I'm hoping that is what caused my dizziness. By Tuesday morning I was feeling better, but still had some occasional dizziness.

On a brighter note, we had a GREAT time this past weekend. Saturday morning we drove to San Francisco to have lunch with one of my photographic mentors, Frank Espada and his wonderful wife Marilyn.

I took several classes from Frank in the late 80's through the now-defunct UC Extension program in San Francisco. It was his teaching that put me on the creative path I've been on ever since. Gayle came up from Santa Cruz to join us with a platter of red velvet cupcakes in hand. We had a great visit and enjoyed looking at Frank's prints and left with a few treasures. Frank will soon be turning 80 and you would never know it to meet him. He was a great documentary photographer and teacher for decades and for his recent work has pointed his camera to the coastal beauty of Fort Funston. Here's a pic that Frank took of us as we were getting ready to leave:

From Frank and Marilyn's house,  the girls headed to the maul (sic) to find Sarah a dress for the homecoming dance. I headed to my buddy Ron's house to hang out and enjoy the ocean view. Once the shopping task was complete, the girls joined us at the Goloubow's and we had a great visit and amazing meal made by Ron and his better half, Chris. We crashed at their house Saturday night, then got up early Sunday to deliver Gayle to Lake Merced where she competed in her first half marathon (second place in her division!) We cheered her on and enjoyed some people-watching under the gray San Francisco sky. Sunday afternoon we and the Goloubows went out for a delicious Thai lunch not too far from my favorite hospital. After lunch we said our goodbyes. We headed back to Placerville and Gayle pointed Horace (her car) south for her trip back to Santa Cruz where she will be starting her third year of classes this week.

So yeah, it was a great weekend spending time with very good friends. During our drive in, it occurred to me that this was the first time in a LONG time that we've driven to San Francisco without ending up at some sort of medical facility. I like it better this way.

Finally, thank you for all the supportive comments to my last post, both here and in the emails that were sent. I've said this before, but I don't think I can say it too often, your thoughts of support are appreciated more than you know. I think I'm finally learning what being a patient is all about: being patient. And I've never been very good at that...

Monday, September 6, 2010

"How Do You Feel?"

This is the question everyone asks when they see me. I know it's with good intentions, but I've found that I automatically answer "fine" because I think that's the answer people want to hear. Well, the truth is I don't always feel fine. It's weird because the first two weeks after surgery I was feeling good and seemingly recovering quickly, but the subsequent six weeks have been up and down. The truth is, I'm not sure how I'm supposed to feel 8 weeks after a craniotomy. Carol did some googling last night and it may take three to six MONTHS for full healing and recovery. In a way,this was a relief because I know I'm not 100% yet and it's comforting to know that this is probably "normal". Fatigue and lack of motivation are probably the main issues. I tire easily and often just don't feel like doing anything. I'm definitely sleeping more than I used to and that's probably a good thing since I used to sleep only four or five hours a night. Sometimes I just don't feel good - whatever that means - but I rarely feel like Good Old Me. And I think I'm a little depressed because I'm not 100% yet and things seemed to be getting better so quickly at first. I've been back at work for three weeks. The first week was a struggle as I came home exhausted every night.  The subsequent two weeks have been easier and I'm getting back in the groove again. I have a workshop coming up in October and have decided to postpone it a few weeks to give me a little more time to heal.

My hair is growing back pretty quickly:

August 29

And here's a new picture of Carol. I like this one:

August 29

So, don't be afraid to ask how I'm feeling. I appreciate your concern! But, I'm going to try and be more honest with my answers in the future. I'm hoping that soon enough "I feel great" will be what I answer most of the time.

Sunday, August 15, 2010

Time Marches On

I see that it's been nearly three weeks since my last post and I'm now at five weeks and two days post-surgery. The rest of our time in Mammoth was pleasant and we spent one sunset evening at Mono Lake, a place we have visited many times as a family over the years.
Sarah took these pictures of me as the light was waning:

On Monday August 2, Carol took me back to UCSF for a follow up appointment with my neurosurgeon Dr X. My friend Tony joined us and it was good to have a visit with him while we were there.

Dr X spent a good amount of time answering my many questions about the procedure itself. His assessment was that I was healing very well, but he thought it would be a good idea if I took at least one more week off of work. It turns out that was a good suggestion, as I will describe later. The one question he couldn't answer was when could I drive again. His opinion was that decision was up to Dr Y, my neurologist who will be primarily responsible for my care as my brain continues to heal and I eventually try weaning off of the anti-seizure medication. So, Carol had to drive us home which sucked for her as she was fighting a migraine that day. We heard from Dr Y the next day and he said as long as I felt well enough, driving was A-OK.

On Wednesday the 4th, I had a visit from a new photographer friend from Vienna named Viktor. He was travelling around California and was interested in seeing a demonstration of the wet plate collodion process. We had a very nice visit and made a few plates. Meet Viktor:

That evening I came down with a fever. By Friday the 6th it had hit 103 and my local GP sent me to the ER for some tests (things happen faster in the ER, especially on Friday). They did blood counts and a chest Xray and all was normal. The main concern would be a post-operative infection, although that would be unusual 4 weeks after surgery. Apparently I had caught some kind of virus that was making me feverish, tired and weak. It persisted through the weekend,so I went in to see my GP on Monday. He sent me back to the hospital for another blood count and a blood culture to check for other possible infections. He also ordered a head CT which is something I was scheduled to do anyway as  follow up to my surgery. We also scheduled my follow up head MRI for Wednesday. He was considering admitting me to the hospital to be put on IV antibiotics, but he wanted to talk Dr X first.  By the time he talked to Dr X on Monday afternoon he had the blood count back and the head CT. The blood culture results would take a couple more days. Still, all looked OK and Dr X thought I should not be put on IV antibiotics unless there was some evidence of infection, which there was not. I was still getting a fever, mostly at night, although it was more like 100 to 101. I was still wiped out. Lots of couch time.

By Wednesday I was feeling better, but still had a slight fever. I went in for my MRI, then back to see my GP. The blood culture tests had come back negative and my MRI was "unremarkable" meaning there was no indication of infection at the surgical site. We decided to just let the thing play out and hopefully my body would heal itself. Every day I felt a little better and my fever (which was still mostly coming at night) kept getting lower. By Friday I felt well enough that I stopped by work to say hello to my colleagues and get mentally prepared to start work again tomorrow. Friday night the fever came back and Saturday I was just really tired most of the day, so more couch time. It's now Sunday and I'm feeling better. I'm still low on energy, but doing better than yesterday, and so far, no fever. I will go in to work tomorrow and do the best I can. I'll work as many hours as I am able, then come home and rest some more.

Now, for the pictures. Here is a side-view of my head taken during the CT scan. If you look above where my ear is, you can see a triangular-shape that is the piece of my skull that was removed during the craniotomy. You can also see three metal tabs with screws on each end that are holding that piece of skull in place. The grid-like material below the metal tabs is the titanium mesh that was used to cover the hole in my skull. It is also held in place with tiny titanium screws.
And you can see all the wonderful dental work I've had that has helped finance my dentist's nice car.

In this sectional view from the CT you can see the mesh material covering the hole in my skull. Even though this looks like the left, it is in fact the right side.

Here is the original MRI from April 19 that identified the lesion on my brain and started this whole thing in motion. (The light gray blob on the front of the right temporal lobe - the left side in this picture.)
April 19, 2010 (Before)
August 11, 2010 (After)

When I first saw this image I cried. It was the first hard evidence I had that what was once there was now gone. Not only do I feel better, I can look at this picture and know that the awesome Dr X had been in there working his magic. It wasn't just a surrealistic dream as it often seemed. It all really happened and it happened to me. 

I know that this isn't the end of the road. I still have to deal with coming off the anti-seizure medication and hope that my old symptoms don't return. Only then will victory be complete. But, for now, I look at the August 11 MRI and all I can think is that I've never looked so good

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.

Friday, June 25, 2010

Prescription Roulette

Today is my last Friday off before surgery (my work schedule includes every other Friday off, which is great). Because I continued to have side effects from the levetiracetam, my neurologist decided to try another medication.  On Monday 6/21 I began taking carbamazepine.  So far it seems to be causing fewer side effects, although Wednesday I ended up coming home from work early because I wasn't feeling too good - more from symptoms rather than side effects, I think. Sometimes it's hard to tell them apart. Fun, huh? Apparently this is how it works with anti-seizure medication; trial and error until you find something that works and doesn't make you feel like crap.
On a brighter note, I have two photographs in the fine art exhibit at the California State Fair:

The awards ceremony is July 17th, just over a week after my surgery. Not sure if I'll be up for it by then or not. We'll see...

Today was warm, but we had lots of clouds which made for some soft, beautiful light. I broke out the 8x10 camera and the magic chemicals to make some portraits of my three favorite girls:

Carol (my hero)

Gayle (analog girl in a digital world)

Sarah (with her new hipster specs)

Unfortunately, Gayle's working at the city pool until 9 tonight, making sure none of the twerps drown. Maybe we'll go grab some sushi at our favorite local restaurant Amerikan Ichi. It's been a good day and a pretty good week.

Two weeks and counting until surgery... These last two weeks have gone pretty quickly. July 9th will be here in no time.