My Brain Surgery Went GREAT!

I wanted to share a short update on how my surgery (August 29) went, and my recovery. 

I'm doing really well. The actual surgery was pretty crazy, I looked and felt terrible at first, but after a week there was a transformation and I started to feel significantly better. I spent 4 days in ICU and then 1 day in a hospital room. And then they booted me out because home is safer than the hospital after you are stabilized because of diseases you can catch at hospital (true story - that's what docs told me!) I was on oxycodone for 1 week after release, and then told to only take Tylenol. Yes, I had headaches for the first 3-4 weeks, but they were normal and bearable. 

My surgeon, Alexander Khalessi was amazing. The procedure was successful and I couldn't be more happy with his work. He didn't even hardly shave any hair! I highly recommend him for neurology issues. My big regret is not taking a picture of my surgery team. Dr. Khalessi and his head "assistant" Doc and the main Anesthesiologist were all really attractive dudes. I should have gotten a picture. Seriously, I had a very good looking team taking care of me. 

I incorporated "alternative medicine" during my hospital stay. I consulted the UCSD hospital Center for Integrative Medicine and with their help was able to arrange some things DURING my hospital experience that really helped. I had Reiki (energy healing) before and at least 4 other times in ICU and hospital room. I don't know much about Reiki, but it felt good, and after surgery it put me to sleep every time, which was difficult because I was in alot of pain and in ICU there was a tremendous amount of noise. In ICU and then again in the hospital room I had acupuncture by Nicholas Duchnowski. Before I went to the hospital I also had acupuncture to benefit my throat and reduce nausea. I had no issues from the tube in my throat anesthesia for 6 hours, and no nausea post procedure. That was really cool because in prior surgeries with the throat anethesia, I have had severe throat pain and nausea after. So I prepared and avoided that.

I also brought BONE broth I made prior to eat while in hospital. They actually brought me a salmon dinner to eat in ICU. I'd just had brain surgery! WTF! I think my regular eating of only broth helped. There's no way I could eat! I could barely open my mouth.

I've had regular acupuncture since released from the hospital. I started an herbal formula 2 weeks after surgery, after I was off all of the Western meds. For herbs I've been seeing Min Fan. For acupuncture I've been seeing 2 acupuncture friends of mine, Nate and Cara. I'm improving rapidly.

My main negative symptoms are: pain (duh) in my head, at the scar site, on my forehead and temple; extreme tiredness; a feeling of cloggedness and reduced hearing in opposite side ear (no explanation known at this point). Overall it's not bad, and I think all the symptoms will subside over time.

The most positive symptom is a complete and utter RELIEF at not having any aneurysms. It is very surreal to live with a bomb that can pop in your head and kill you at any moment. I've been practicing mindfulness and being in the moment for years now. I will continue to do that. But not having the thought  in my head at random moments is really LIBERATING. I literally DON'T think about that awful awful image of what could happen. I don't have to try not to think about it, or calm myself down. I feel elated. I am so fortunate. So very fortunate. 

I'm sure there is more to say, but this is just a brief update. Pictures to come!

Telling my 10 year old I'm having brain surgery

We told Dante last week I was having brain surgery. Here's what a 10 year old worries about. He said with a tear in his eye, "I hope they don't damage your hippocampus. I'm scared you might not be you." For the rest of us, the hippocampus is a part of your brain that is known for storing memories. Kids are so deep. I assured him they are not going near the hippocampus. He had a sense of relief. He's also looking forward to Friday mainly because it's the day a new Kendama is coming in the mail. Go figure, kids can hold both things at the same time in their hearts and minds. This is a crazy experience. Thanks again to all of you for your love and support, all the little and big stuff has really been making a difference. Hugs! Friday is the day.

It's ON! My brain surgery in 1 week.

It's happening, finally. Next Friday, August, 29, 2014. 11:30 a.m. UCSD Hillcrest, San Diego. Earth. I've spent alot of time preparing for this mentally. I have to say, I am feeling really great about the whole thing.

I wasn't feeling that great a couple weeks ago, but I had a visit with my Therapist and it pivoted me into a more positive space. 

I'm floored by all the generous support by my community of support via the GoFundMe fundraising campaign. More than $2800 raised in less than a month. You can check that out here if you haven't seen it. Because of that, I am calmed knowing I can get what I need. 

I've been able to spend $50 on grass fed bones for bone broth. According to Chinese Medical theory, bones, especially those that contain marrow are good for your bones and your brain. I got a whole bull femur. Cut that sucker up. Boiling it for hours and hours. $50 on bones is expensive, but I knew I could afford it, thanks to your help. I also spent $50 on small glass tupperware for the bone broth. I am bringing it to the hospital to drink atleast once a day, instead of only that crap apple juice they have (which I'm sure I will gladly drink as well!)Really, this makes a difference, and I am calmed knowing I can do many things I wouldn't do normally, thanks to your support. 

I had my final anethesia clearance appointment today - all clear - but going to the hospital got me feeling nervous, anxious. I tried deep breathing, but I am planning on getting a $60 massage at a great Korean massage place my mom goes to in El Cajon area. Also know I a can afford, no problem, thanks to your help.

I've booked 4 acupuncture appointments for the weeks after I get home. I'm working with the UCSD Acupuncture center to get acupuncture while I am in the hospital, as well as some massage and healing touch. Love UCSD! All this acupuncture I can afford no problem, thanks to your help. 

I feel incredibly fortunate that this aneurysm was found, and is fixable. Yes, I'm scared of having this surgery, of feeling shitty afterwards, of any complications, and of course, in the back of my head, the unmentionable. But my mom helped  feel confident of this kind of radical surgery when I told her about the surgery. She compared it to what Angelina Jolie did... something drastic to avoid something even more horrible. The avoidance of something actually possible with a preventative surgery isn't crazy in these kinds of serious, life and death, situations. Living with an untreated aneurysm is a mind-fuck, pardon the French. Every moment might be your last and you know that very intimately. Every twinge of a headache triggers a moment of panic. And in the case of aneurysms, it isn't that many weeks that pass that I don't hear of people dying from aneurysm rupture. Martha Sterwart's sister, for god's sake, died of an aneurysm rupture recently. I have something in common with Martha Stewart... who would ever have thought!?!

I am one of the fortunate ones. They found this before it is giving me any problems. I'm relatively young. I'm healthy. I live at a time when this problem can be treated successfully. I plan on surviving and thriving, and fulfill my responsibility to the universe to the best I can be. I am lucky. I am a bunch of stardust that congealed and is alive, thinking, in love, always an optimist. Stardust can form into optimism. Trip on that. That is actually what is happening. Wow.

Thanks for all your support and well wishes. It helps to feel a community wrapped around me at such an intense time. Love and hugs to everyone. 

The Waiting is the Hardest Part

I have been coming up upon the proposed time period of my brain surgery. I had an appointment, some questions came up, we've done some more research, and have another appointment this Thursday. In all likelihood it will go forward for later in August. But, the waiting is the hardest part.

Setting dates matter. Weddings happen. Knowing approximate due dates of babies helps. We make dates to confirm, to consolidate, to prepare, to end denial and more towards the next steps. So, as I hang in a bit of limbo, well, it's not that easy to wait for such a thing.

I look forward to letting you all know what is coming and when, as best I know, as as best I'm able to share. To be honest, as this all approaches I've not been my TMI self. A preview, however: I'm going to start a GoFundMe.com page to help us cope with "extra" costs that should be part of the covered expenses to help recover from such a major surgery. Things like as regular acupuncture, herbs, massage, psychotherapy, new cozy pajamas for all that laying around I'll be doing! So, stay tuned.

Love to you all and to all the support you continue to give.

A little Tom Petty, "The Waiting Is The Hardest Part"

http://www.youtube.com/watch?v=uMyCa35_mOg&list=RDuMyCa35_mOg#t=5

A little history...

I thought it might be good to say a little about the history of this aneurysm and why I'm having surgery in September, and not now, or sooner.

Doctors found my large aneurysm in 2009 by accident. I had no symptoms. It was found by chance on a brain scan I was having for another - unrelated - reason. And doctors saw the aneurysm. I had coiling probably a month later to repair that large 1cm aneurysm.

Then after I moved to San Diego in 2010 I had a follow up brain angiogram and the doctors here noticed I had a small 2mm aneurysm in a nearby location to the other. I don't know why the initial doctors, who I trusted greatly, didn't mention this smaller one; perhaps they were distracted by the very large one. I don't know. But my current neurosurgeon has been "keeping an eye" on this smaller one in the yearly brain angiograms I've had since 2011. It has not changed. But, it's not in a good place. And it's an aneurysm in my brain.

My neurosurgeon recently evaluated my case with two other neurosurgeons at UCSD. One is the head of neurosurgery there, and at least two are from John's Hopkins (including mine), an amazing medical center. Two out of those three suggested I have surgery now. The other recommended "wait and see" if the aneurysm grows.

It is not likely that anything is imminently going to happen, but there is always a risk of aneurysm rupture (about 1% per year, getting more as you age), and the surgery is a more or less "permanent fix" to the situation, and I can go on to live a long healthy happy life into old age until I die of something else.


But lets be honest. I have mental health issues. I'm working hard lately to finally NOT have mental health issues, but I have some mortality issues because of some of my early experiences with loved ones dying. And I have a lot of fears that I live with daily about this aneurysm, which I try to be very "Zen" about, but man, I would really rather be thinking of other things. And I'd like to be free of that mental clutter. And I don't want my husband, my family or Dante to worry and have their own fears.


Again, there is nothing immediately wrong with me. So, I am "waiting" until September to have the surgery, which combines a bit of all of the advice. 

As my mom said, when she was trying to grasp this whole thing, said insightfully, "It is kinda like what Angelina Jolie did. You do it to prevent something horrible from happening." Yes there are risks to what I'm doing. But I have great doctors and this procedure has been around a long time and has been greatly improved in modern times.

So I am doing this after I graduate from Acupuncture school in late August (2014, this year!). My acupuncture license exam is February (2015), so that leaves plenty of time to recover and be thriving again for Licensure. Then, it's starting acupuncture practice. Lots coming up, lots of life to live. So, I'm having this surgery to I can keep living this awesome life without the fears, or the actuality, of the unmentionable happening.

This is my start.
 
After moving forward from my hair ruminations, here is what I have so far set before me to accomplish in this process. 

• Get a therapist on board. I have a history of Major Depression and I want to maintain my current good mental health throughout this process. This is more of a preventative measure than to solve anything in particular. I did that last week, and am happy to have this in place.  

• Meditate 10 minutes a day. Silent meditation. Count from 1-10 and then 10-1 with the breath. I do this about 3 times a week, but really want to do it 10. Everything I have ever heard or read about meditation shows its physical, mental and spiritual benefits. It’s a no-brainer, and I’m using this to finally make me develop a consistent Meditation Practice.

• Exercise more regularly. I am generally active, but like everyone, I sit for too many hours in a row, too many days in a row... Ideally I would be doing a lot, but to begin, I am going to walk one hour 3 times a week. I probably do 15 minute walks 3 times a week, but I need some duration.

• Understand the current research knowledge on why aneurysms develop, whether there are people pursuing avenues to prevent formation, reduce rupture rates? What’s the deal with the current Western scientific knowledge on aneurysms? Should I be taking any particular vitamins, etc. to “strengthen my vessels”. What does that even mean?

• Research from a Chinese Medical position what is thinking on the above questions as well.

• Visit a nutritionist for nutritional counseling related to the above research issues, to learn more about recommendations and knowledge for people with history of aneurysm development, growth and rupture.

• Develop a “Paper” on my findings, run it by my neurosurgeon (who’s also a professor at UCSD medical school) and get his opinion. Perhaps take him to lunch. Ultimately, I would like to see if there are any broader recommendations or “You might want to consider doing...” for people with a history of aneurysm development, growth and/or rupture. My initial inquiries into all this is that the few resources that exist are scattered, and there is nothing pulled together in this way for people like me. Why not develop that in the process, right? Upwards of 5% of the population have been found to have aneurysms (ranges vary from 2-5%). 30,000 a YEAR have hemorrhagic strokes from aneurysm rupture. The death rates for those 30,000 a YEAR strokes/ruptures are crazy high. If you are lucky to survive you will likely have severe disabilities. Here’s my takehome: This is a condition with very HIGH stakes. And there are 10s and 10s of thousands of people affected by this. I’m totally not alone here, and I think it’d be super helpful for those of us who are lucky to find these suckers before they rupture to have more information. It’s kind of a big deal and it sure would be nice if there’d be more specific information out there.

More thoughts on the hair... with pictures!

(For earlier post about hair, click here)

So in all this thinking about my hair, I dug up some old pictures. And they are reminding me of good, funny times. As my earlier post said, I shaved my head bald while living in Berkeley in 1994. A few good stories and thoughts must now come out of me...

It was a whim. I saw a woman in Berkeley with a shaved head, and the thought of it seemed so crazy. I've been fairly good at recognizing when are good moments to just "f@ck it" and go for something you know is crazy. This was one of those times. I had 7 months until graduate school started at USC. And it's just hair. So, bam! I shaved it off.

Coincidentally, my parents called me a few days later and invited me to come to Colorado to visit, they pay. How could I say no? So, before I went, I said "Everything is OK, but I have to tell you something..." Long pause... "Um, I shaved my head bald." Instantly on the other line I hear I hear a loud deep sigh and "Oh thank god I thought you were going to tell us you were pregnant." Hilarious laughter! I was 24, not dating anyone. That was their first thought.

So then I flew to visit them, and when I walked in the door, my parents and their two great friends (who I also knew from childhood) were wearing flesh colored stockings on their heads, so everyone looked BALD! My parents have always been awesome when it comes to humor.

Next story... I would have made a great lesbian. I've always been an "aspiring lesbian" but it's just never been my thing. Yea, I had sex with a girl in college (and I've been to college 3 different times now, and I'm not saying which!) but, well, I fell in love with my husband, and that remains incredibly strong. But seriously, I can rock the look!

I got a job at Buffalo Exchange in Berkeley, on Telegraph Avenue. They loved the bald look. I got an piercing and they didn't blink an eye (pun intended, it was an eye ring loop, can you see it in the pictures?) I loved Buffalo Exchange. My first real contact with the gay community was while I lived in Berkeley and worked at Buffalo Exchange. I was free, felt free, and they allowed me freedom to explore myself. Good times.

While in Berkeley I found out I had an interview with USC Ph.D. program in Social Psychology. I went down to visit, completely freaked out that I had shaved my head. This was a rigorous, competitive program, only 15 students were accepted that year. I wore cute hats (thank you Buffalo Exchange!) In the end, I think it worked in my favor. I was well qualified, but so were the hundreds who applied and didn't get in. I think ultimately it made me more interesting, unique, and schools are looking for that.

Finally, I met my husband about a month after I shaved my head. I was living in Berkeley with his sister, a friend I met in Spain while living abroad my junior year of high school. She was from Chicago, I from Houston, and we became incredibly close, which continues into adulthood. He was living in Los Angeles and took an Amtrak train to visit for a weekend for spring break. I will never forget when he walked down the stairs out of that train station. All I saw were his eyes. His amazing blue eyes. He loved my craziness. Loved the short hair. Loved rebellious women. And I loved his eyes.

The weekend I met my hubby!