Monday, June 14, 2010

It's All in My Head

First, this blog is no longer about my photography. For that, go to my website. I decided that writing about what I'm going through might help me deal with it, so I am going to use this blog for that purpose. Here is a synopsis of where I'm at:
  • Around Christmas of 2009 I started having spells of lightheadedness, slight nausea and just not feeling good. After a few visits to my doctor, he couldn't find anything wrong and suggested we wait and see if it got better. It did, then it didn't.
  • Finally on April 19 I had an MRI of my head at Marshall Medical near where I live. The radiologist identified "an abnormal area on the lining of my brain in the right temporal area" which is all I knew as my doctor left the next day for a couple weeks of well-deserved vacation. Holy fuck, that sounds bad, right!? Kinda looks bad, too:
    • With my doctor gone, I was kind of freaked out about this finding without knowing what it meant. Luckily, I happen to have a photographer friend who is a pathologist at UC San Francisco and he offered to have some of his colleagues look at my scans and tell me what they could. He also happens to be Greek, and our people like to look out for each other, provincial lot that we are. Lucky for me, this thing in my head is not all that bad. It is a lesion, not a tumor and is not immediately life-threatening. But, the way it makes me feel has been lifestyle threatening. I've had to cancel workshop trips to Philadelphia and Montana and a big family trip with two workshops to Scotland we had planned for July. It's hard to plan anything when you don't know from day to day if you're going to feel OK or feel like crap and not want to do anything except assume the fetal position and whimper.
    • After this thing was found on the MRI, the radiologist also recommended a CT scan to get a better look at the bony structure of my skull. 
    • Armed with these two tests I went back to see my doctor on April 30. He said "Hmmmm... we need to deal with this and you need to see a neurosurgeon." But I don't WANT to see a neurosurgeon. That sounds too scary. And besides, we don't even have any neurosurgeons in Hangtown. While there is a good neuro group in Sacramento, my doctor said if it was HIM, he'd want to go someplace like UCSF, one of the top neuro-science institutions in the country. But, you know, it's a long drive and shit. SO WHAT?!?! WE HAVE CARS! SIGN ME UP! IF SOMEONE'S GONNA POKE AROUND IN MY HEAD, I WANT THE SMARTEST KID IN THE CLASS.
    • So on May 17, the first day of my 51st year on this planet, my dear wife Carol and I made the trip to UC San Francisco to meet with my brand new neurosurgeon. Out of respect for his privacy, I will simply call him Dr X. But let me tell you, this guy has a resume that would make any Jewish mother brag until your ears bleed. Dr X tells us that the lesion doesn't seem serious - it's not a "mass" (tumor) and it may or may not be responsible for my symptoms. But, the CT scan (which shows bony structures rather than soft tissue) shows that I have a hole in my skull and the lesion is being pushed through the hole:
    • Dr X says that this hole needs to be repaired and it's a fairly simply procedure (simple as far as brain surgeries go). But, first he wants me to be evaluated by neurologist to get a better handle on what may be causing my symptoms. He speculates that my "spells" may be low-level seizure activity perhaps being generated by the lesion. Also, he wants me to have an EEG and more detailed CT and MRI scans that will help him during surgery. Soooo... we schedule the tests for June 2.
    • I soon find out that the neurologist assigned to my case has had a cancellation and I can get in to see him on May 25. So Carol and I make the trip back to UCSF to meet with my brand new neurologist whom I will call Dr Y. Dr Y is a specialist in the treatment of epilepsy and is a very nice guy and easy to talk to. He asks me a whole bunch of questions including the time of day I was born and whether or not I found school difficult (ummm... not until partial differential equations in college). He then discusses my symptoms with me in detail. And this is the hard part for me because my symptoms are kind of nebulous. I get lightheaded, get sort of nauseous and when it's bad, I get a weird discomfort in my chest and literally feel like I'm dying.Hard to put into words, but when it's bad, it really sucks. Well, to my surprise and relief, these are not that unusual for someone experiencing seizures. If what I'm having are seizures, they are not typical - no falling on the ground or losing motor control or losing touch with my surroundings - but they are not unheard of either. It turns out the location on the brain where this lesion is (the tip of my right temporal lobe) there isn't a whole lot going on which may be why my seizures (if that's what they are) are so nebulous. So, with seizure activity as a working hypothesis, Dr Y recommends I begin taking anti-seizure medication to see if that helps my symptoms. He prescribes levetiracetam because it is well-tolerated in many patients and it takes effect relatively quickly. 
    • I've been on levetiracetam since 5/25. It does seem to help suppress the symptoms I was having, but, as with most medications, it causes some side effects. At first it made me quite dizzy and VERY tired. Now that I've been on it for almost three weeks, the side effects are getting better and it seems to be preventing most of the symptoms I was having. Although it hasn't been perfect. I had a pretty bad night last Wednesday and I kind of freaked out. Unfortunately, this happened in front of Sarah, and I think it scared her a bit. Luckily, Carol was there to calm me down and comfort Sarah. I've been communicating with Dr Y by email, updating him on my symptoms and side effects. He's concerned that, although the med seems to be helping, if the side effects don't go away I may need to try another medication.Meh...
    • In the mean time, Carol and I made the trip back to UCSF on 6/2 for my additional tests. EEG in the morning (roughly 2 hours of flashing lights and hyperventilating while having 28 probes glued to my head and face) and CT and MRI scans in the evening. Unfortunately, I was also feeling very bad that day. Dr Y had suggested I cut back on my dosage to see if the side effects were reduced, but that seemed to bring on a bad day of symptoms. The MRI was the last event of the day at about 7:30 pm and was a real endurance test.  Thirty minutes being stuffed into a tube I barely fit into with the jackhammering sounds of  the MRI machine while trying to remain perfectly still. Not fun, but now Dr X has some awesome pictures of the inside of my head to help him do his surgical magic. We had left home at 6:30 in the morning and I was wiped out. Thankfully, Carol got us home by about 11 pm. One Long F-ing Day....
    • Now I just wanted to know WHEN we'd do the surgery? Let's do this thing and get it over with! Life is marching on and I've got shit to do! Dr X had told me that he did surgeries on Fridays, so I'm hoping maybe June 11th or the 18th. I got a call from his assistant on Friday 6/4 that he wanted me to come in on 6/14 to discuss the results of my tests and what to do next. Ugh! Not til 6/14? And another 6-hour round trip? Can't we do this over the phone or on Skype or something? She says well, they don't have Skype (EVERYONE should have Skype) but she'd ask Dr X if a phone call was OK and he said sure thing. "He will call you on Monday." So, I tell her that I am gainfully employed and not home during the day, but I don't go anywhere without my trusty iPhone, so please have him call me on my cell. "No problem." Sweet!  I spent most of Monday at work staring at my iPhone waiting for it to ring. It didn't. So, I called home to check the answering machine and sure enough, Dr X had called and left a message. Sorry he missed me and he'd call again Tuesday or Wednesday. DAMMITTOHELL!!!! I call his assistant to remind her to please have Dr X call me on my cell phone. "OK, I'll make your cell phone number your default number in our system, then he is sure to use it." Sounds like a plan. Tuesday comes, I stare at phone, phone doesn't ring. You can guess the rest. Another message from the good Dr on the home answering machine. This time Carol calls the assistant. Yes, when shit needs to get done, send in the women. Now, I understand that Dr X is a top brain surgeon and my case is probably low on the priority list in terms of urgency, but it's the biggest thing in MY life right now and I really want to know what's next.
    • Finally, Thursday evening about 7:30 my iPhone in the cool red case lights up and Dr X is on the other end. It is a kind and familiar voice and he apologizes for the mixups earlier in the week. First he tells me the EEG is negative, meaning it was normal and it did not detect any seizure activity. This was not unexpected and is basically an inconclusive result with respect to what is causing my symptoms. The CT and MRI were consistent with the scans I had done in April, but these were done in greater detail which would be a big help for him during surgery. He had consulted with Dr Y and they decided they'd like like me to continue on the anti-seizure meds for a few more weeks before the cutting starts, so my surgery would be delayed until early July. July 9, to be exact. FUCKFUCKFUCKFUCK!!! That's four weeks away and I really don't want to wait that long. But more time on the meds will help the neurologist evaluate what's happening and more time on the meds prior to surgery can help prevent post-surgery seizures. Apparently poking around in your head with sharp instruments can induce seizure activity. Who knew?! Yeah, the smart kids did...
    So that brings things up to date as of today, June 14 - 25 days until surgery. I had a pretty good weekend. The meds are still making me tired and kind of moody, but other than that, I'm doing OK physically. Mentally, dealing with the delay of my surgery is tough. I really want to get this over with and waiting four weeks is not going to be fun. 

    On a brighter note, Gayle came home for the summer on Saturday, so it's really nice to have the whole family together again. Right now my favorite thing to do is lay on a chaise lounge out on the deck in the early evening hanging out with my three girls talking, laughing, web surfing and listening to some good music.When this whole thing started, I kept thinking (selfishly) this isn't fair! why is this happening to me?! how can my luck be so BAD?!? Relaxing on the deck, surrounded by my beautiful and amazing daughters Gayle and Sarah and the best partner in life I could ever hope for in Carol I realize just how lucky I am.


    1. Its hard to appreciate the good stuff when all you feel is the crap stuff. Life will never again be taken for granted and you'll never forget who and what are important. Now is the time that you're family and real friends will step up to the plate and bat for you - reminding you how important you are to them. Be well my friend.

    2. That all sounds extremely sucky! (Sorry, I couldn't come up with a better word -- I need more coffee). Please know that I am here for you, or wherever you need for me to be. Waiting is excruciating, but time does pass, and don't even try to put it out of your ... well, I mean, it's not going to go away immediately, but you can find a gentle way of thinking about it ... maybe?
      (sorry to be anonymous, but I didn't know what any of the other options meant! I'll be in touch.)

    3. Well Fuck. This sucks! I wish we were near so I could make you chicken soup or whatever it is one does when a beloved friend is diagnosed with needing brain surgery. When you come through all this (and you will do so in an exquisitely wonderful manner, I am sure) at least you can respond to people telling you you're wrong that you've already "changed your mind." Sorry... Mr. Fuzzy didn't even put me up to that.

      Anyway, we're rooting for you and sending loving "get-well" vibes your way.

      Mrs. Fuzzy & the other Dr. Y.

    4. Thanks for this blog! Though Wena has talked a lot with Carol, and kept me in the loop, I'm really grateful to know the whole story from your personal point.
      We're waiting with you for July 9, hoping the wait isn't too stressful, and wishing you the best results. We're here for you.

    5. Hang in there dude, before you know it you'll be back on your feet. Hope to see you this side of the pond soon.

      John B.

    6. Geez, wish you the best, your at the best facility there is. relax, don't fear the surgery, you'll be fine!

    7. I had a similar issue with a small 7x14 mm laision only seen in one scan of the posterior side of right temporal bone, I have a small lipoma( fat deposit) there which runs in my family but I am recommended advanced CT Scan with contrast. I have absolutely no symptoms of anything but this was discovered when I was weight lifting and had double vision for 2 days and then went for a CT scan.