A Day Like Today

One year ago, on a day like very much like today, this large empty room was a much different place. Many candles burned where now there is only one. The sounds of Bob Marley filled the room as they do tonight. I was alone with Karyn, just the two of us, as we were in the beginning. In a time when we were simply together, in love, happy and free with nothing but the great mystery of life ahead of us. Sadly though, unlike those long gone times, this would be her final day. The body that had carried her to so many places, guided her through so many stages and had created two new lives was growing tired of fighting an unbeatable disease. It was on this day, July 16, 2006 that her body would make its final earthly gesture. The breath she took at 2:34PM became her last and so ended Karyn's life as we knew it.

When I first met Karyn I was completely overwhelmed by her presence. Her beauty was beyond words and she exuded an energy that I had never encountered before. These distant times are like a wonderful dream you fight to remember in the early hours of the morning. They were innocent and pure and will forever be among the greatest moments of my life. Our connection was greater than the sum of the parts, our friendship unlike any I've experienced and her influence strong enough to continue to this day. We created two amazing human beings together and our lives became dedicated to their lives. I can count on one hand the times we were apart. I can count on two fingers the times that we fought (bickering not included). I don't need fingers to count the times we raised our voices at each other because that never happened. We created our own relevance here and, in the spirit of that great American dream, we hand-crafted careers that were woven into our lives. Our destinies were proudly in the palm of our hands until that fateful 26th day of January in 2006 when we learned that control would be relinquished to fate.

A little over a year after watching my dear friend, mentor, hero and father lose his brief battle with cancer at 62 I was back watching it all over again... this time it was Karyn. Of course, I wasn't alone. We all watched in horror as one surgery led to more and one complication begat another. Seeking hope between every line of every horrific bit of information we were given, we pressed on. Soldiers on an impossible battlefield, life contained no respite. When you fight the fight of your life, all rules and restrictions are thrown by the wayside and survival takes center stage. But as is often the case in life, some foes are too powerful to be beaten, some stories are too sad to be told and some things are simply too unbelievable to believe.

Many of you have commented on how appreciative you were that I was able to share so many thoughts and experiences with you as the situation with Karyn unfolded. Those of you that truly know me understand that this is just how I am. I felt it was my obligation to make sure that all of you, Karyn's dear friends and family, were up-to-date on what was going on. And while our lives here were put on hold, the outpouring of support was truly amazing. Though I have not yet had the chance to formally thank the 250 of you who offered everything from meals to money, let me simply say that we could have never made it through this ordeal without your tremendous support and it humbles me to this very day. To whatever extent my posts were able to ease your anxieties as you watched and worried from afar, I am grateful. As it turns out, this blog has unintentionally become my journal from the front lines and I will personally see to it that it be bound and archived so Aidan and Lieneka will be able to travel to this confusing time when they are ready to do so.

This will be my final post to the blog and I feel it's a fitting time and way to end this chapter in our lives. I know Karyn would want us to be focused on the happy things in life and to remain grateful for all that we have. I encourage you all to post comments here if you wish to and I will see to it that they are all added to the archive. I intend to keep the blog online indefinitely so that it is always out there to serve as a reminder of how quickly life can turn around and how thankful we should be for every day we get to experience. It's easier said than done I'm afraid, but we do the best we can.

I am always happy to get messages from you all so stay in touch when you can. And to those of you who know what I mean...

Everything *is* gonna be alright.



I love you Karyn.


~Julian

Mother's Day and Memories

It was this time last year that Karyn was about to be released from UCSF where she would spend roughly two weeks at home before being readmitted on May 30th. What we didn't know a year ago was that these were to be her last coherent times at home. I actually remember mother's day because of the sadness I felt that she was in such a weakened condition. She was tired a lot, there were headaches and she and I were up every hour or so during the nights. What strikes me about it now is that, with all the things she was going through, she was still a mother to the kids. She would talk to Aidan and answer his questions. Lieneka would climb up onto her lap and they would play. She was such a strong motherly force and it was something she loved like nothing else.

It is a fitting day to remember Karyn because she was such wonderful mother. In fact, some of my fondest memories are the moments of her motherhood-- and there were many. I learned so much from Karyn about being a parent and I continue to feel her influence today. I know she would be delighted by how well all the kids are doing...both ours and our friend's.

I am so proud of the mother Karyn was as well as the mother she will always be. That her influence continues today is testament to all that she was.

Happy Mother's Day, Karyn


~Julan

Marching On...

Yesterday was the 2nd Annual Karyn Nelson Community team walk for the National Brain Tumor Foundation. It was a total success and I take my hat off to Thet for getting the ball rollng this year, and to everyone else who either donated their precious saturday, their money or both. Our original goal of $1000 was easily surpassed and is probably going to be over $5000 when everything gets counted. A big "hooray" to all of you, I am certain Karyn would have been both proud and moved by the continued show of support.

The weather was fantastic, completely opposite from the cold and fog we had last year. I realized as I was parking the car that this was the beggining of a new tradition for us. It's an event that we will continue to attend until we can no longer walk or until there is no need to raise money because they fouind a cure. There have been some promising developments in the world of brain tumor research and our very own Dr. Andrew Parsa still has 12 patients in his neuro-vaccine clinical trial who are alive (out of 12 who entered). At this point it's still about life extension, but I feel that it will become life preservation in our lifetimes.

That all said, I saw many sad sights throughout the day. There were fresh teams with fresh names on their t-shirts, there were people in wheelchairs and there were a few shaved heads. The one moment that sticks out for me was something that I heard about half way through the walk. Much like the conversation I overheard last year from the seemingly healthy woman at UCSF who had just been diagnosed with a glioblastoma, this was a male voice that came into focus walking behind me. "Well, I had had several clean MRIs and, though I knew it wasn't wise, I felt like I was cured." He went on to say that he started having trouble sleep about 6 weeks ago and a new MRI showed significant tumor growth. To make the proverbial long story short, he had a craniotomy 3 weeks ago and was on medication, chemo and had begun radiation. At that point I turned to see who this was and was a little shocked to see a young, healthy man who couldn't me more than 35. Though the event was quite crowded this year, I ended up seeing him many times after the walk had ended (survivors wear turquoise t-shirts)---in the food line, playing frisbee, etc. It's amazing the lengths that this horrible disease goes.

Of course, in all the sadness, there were many good sights too. First of all, the event was completely packed, I would guess that there were at least twice as many people there this year. Karyn's team found a nice big tree to park under and had a nice picnic while we watched the event and listened to the music. In attendance this year were Thet, Mick and Tika, Beatrice, Sam and Dante, Susan, Reilly and Georgia, Abby, Jack and Fiona (she's cute), Evelyn, me, Aidan and Lieneka. The kids are all a year older now and it was great to see them all playing with their Karyn Community shirts on. I realized that this will be more than just a fundraiser to us as time passes. It will always mark a terrible period of all of our lives and there were many moments where I wished I could just pop over to UCSF to talk to Karyn again like I did last year. It will also be a day where we feel more connected to that terrible time and remember just how much Karyn endured and how much we went through. As time goes on it's easy to let the hustle and bustle of the days get in the way of these important memories. Lastly though it will always be a time for our core group to be together and to see our kids age a year at a time.

To my dearest Karyn, I miss you more than ever, but I promise that we will all keep marching on... together.


~Julian

Karyn's 42nd Birthday

Well, here we are. Karyn's 42nd birthday. I was just thinking about where we were a year ago today---celebrating her 41st birthday in the Solarium on the 8th floor of UCSF, about to face another craniotomy. I slept in the hospital bed with Karyn that night. Though we spoke a little of the potential of her not making it through the surgery, we were always focused on the prize, the potential of her recovering. How far we've come.

Still, looking back I find it a little ridiculous that we were hopeful given the nature of Glioblastoma, but I am thankful that we had that hope at a time where there was nothing else to hold on to. But I also regret not having the time to properly say goodbye, or at least acknowledge what was happening. I think of all the times I spent in that hospital sitting by her bed, and though we were right there with each other, I had no way of knowing what she was thinking. What would she say if she could?

So now what do we do? What would Karyn do? That's a question I find myself asking a lot these days. I suppose in the end we will never quite know what she would do in these times, but I think she would be proud of all of us. Mostly though I think she would be proud of the kids and how well they have adjusted to the brutal hand they have been dealt. And I know that she would want us all to be living life to the fullest---stopping to enjoy the little pleasures and not letting the bumps knock us too off course.


~Julian

The Day the World Stood Still

It was one year ago today that I woke up from a night on the couch. I had offered to sleep there in hopes that Karyn would get a good night's sleep. Surely her insomnia was my fault somehow. I remember waking up to Aidan open my eyelids and laughing. "Why was Daddy on the couch?" I woke up.

I remember vividly as Karyn came down the stairs, wobbling for a moment, catching herself on the wall. I remember thinking it looked as if she was drunk. I said good morning and asked her how she slept. Not so well. She smiled at me at said not to worry and that we would figure it out. She smiled at me and I will never forget seeing the left side of her face drooping. The concern was immediate and I knew something was horribly wrong.

The night before I had been cleaning pictures off my laptop. I had pictures that went back to our honeymoon in Fiji and for some reason I found myself caught up looking at them. I remember thinking how happy a time that was and how thankful I was to be married to Karyn. For some strange reason I remember having a quick thought of "what if something ever happened to her?" as I looked at them. To this day I wonder how I had that premonition, but I was obviously tapped into a greater power...

I was probably quite worried looking at this point because Karyn made a comment to me about not needing to worry. I kept asking that she call Dr. Fetcher. "It's not 9am yet"... Well, 9am came, she made the call and we got the word that he did not like what he was hearing and she should get to the emergency room right away. Aidan was off at school, blissfully playing on the last day he would have a mommy as he always knew her.

We put Lieneka in the car and headed to Marin General. I could recall the details of that day in great detail if I wanted to, but I have relived that one so many times, it's good to let it slip into history. But as we sat in one of the rooms waiting to see a doctor, Lieneka sleeping in the stroller as her future was changing around her, Karyn was concerned that she was having trouble moving her are. "I'm starting to not be able to move my arm" she said. I held both of her hands and told her not to worry, and that it would be ok. All the while I was worrying inside. What was this? This was weird. Would she need to stay in the hospital tonight? What would I tell the kids?

The doctor came in and requested an MRI. This was a word that I had only scientific knowledge of. Another delay in our day. "Some change in plans huh sweetie?" I said as I walked beside her on the gurney as they wheeled her outside and to the MRI truck. She went in. An hour later she emerged. I asked the technician how she did... he said, "She did great" and said to Karyn, "You are lucky to have this guy." Thinking back now, he knew our fate but obviously couldn't say anything. He had just seen the demon that lurked inside her head. My mom came to get Lieneka and airlifted her to safety. After a nearly 2 hour wait to talk to someone, a doctor finally emerged and closed the door behind him. Whatever it was he said, I only remember one sentence, "I'm afraid this is more consistent with a brain tumor". The room felt 200 degrees, I was shaking and had to take my sweatshirt off instantly. The rest is truly history.

So here we are a year later. The void I feel every day is still here. I did lose that smiling angel in the honeymoon pictures. The kids lost their mother. We lost a friend.... a sister.... a daughter. I can't imagine the battle that laid before us one year ago today. But most of all, I can't imagine what Karyn's reality must have been like. The fear she must have felt is something I can't think about for too long before physically needing to think about something else. She bravely accepted every curve ball that came her way.

After last year I no longer believe in an all-powerful god. Surely any entity with control over this earth would never allow this to happen. Sadly, suffering is not reserved for Karyn and there are many more people suffering on the earth than not. But I still believe (as I always have) that there is something else to life and I know we will all end up in the same place someday--- we will be with her again. So for now, we live with what we have. I try to enjoy the memories I have and do my best to erase last year. But I am rarely successful. A smell, a song, a picture.... many things remind me of her and what she went through. And though the illness and its details will hopefully blur with time, my memory of Karyn is vivid.

Wherever it is you are Karyn, I will always love you. WE will always love you and we will never forget the light you shone on this often darkened place.


~Julian

Merry Christmas

I woke up this morning and realized that more than 5 months have gone by since Karyn passed away on July 16. As I navigate this holiday season I keep having memories of this time last year. Lieneka was just over a year old, Aidan was 4 and life was normal for us. It's hard to comprehend how much would change on Jan 26th and how much our day-to-day lives were about to be altered.

There have been many times where I have tried to write something to post to the blog but nothing ever came of it. Now here I am, 2:32 AM... Christmas day. Aidan is asleep beside me, the visions of sugarplums (and R2D2s, Nintendo Wiis and RC Cars) are surely dancing in that magical head of his. One thing is for sure, that clattering I just heard out of the deck was surely Santa making his way into the living room to place one last present.

Christmas Eve is a big celebration for us and this year re-iterated the strength of tradition in our family. We had the entire family here (nearly 30 people now), we ate like royalty and managed to carry on the centuries-old tradition that is called Vigilia. Though several people are no longer standing beside us, their collective presence was certainly felt. When I think about last Christmas it's quite an eerie feeling for me. We had no idea what the future held for us, the fear, the pain the intense suffering and the unbelievable sadness. As I lay here writing this I realize that we are all in this position. Tomorrow is not a guarantee. Life is random. Things will happen. It can always be worse. It can always be better. At least you have your health. Money will not buy you happiness. A close family is a strong family. Love prevails.

Life goes on for us, and like the traditions we hold so dear, Karyn's memory will always be with us. Though I may not know where tomorrow will take me, I know that I will continue to push forward in spite of everything we have had thrown at us. 2006 has taught me to live for today, dream about tomorrow and fondly remember yesterday. It's where we've been that makes us who we are .

So as I enter a year of firsts without my beloved Karyn by my side, I leave you with these memories. Memories of her laugh. Of the joy you could see on her face when she was with Aidan and Lieneka. Her sense of style. The devotion to her friends and family. Her creativity. Her kindness. Her gentleness. Her beauty. She was everything in the world to me. There are times when I least expect it when I will see her in the faces of the children. Often times it's such an amazing likeness that I stop in my tracks in an attempt to get one last look into her eyes. Or to feel just one more of those wonderful Karyn hugs. To hear her say hello one more time. Or goodbye.

We all love you Karyn...

A Few More Words

The Memorial has come and gone and it's Monday morning.

I realized there are many things that I want to say to everyone so
check back soon...

~Julian