Benefits and Blood Tests

Hi Everybody,

It's been a while since I've posted for you, so it may take me a minute to find my groove. I'd like to say that I've just been too busy to find the time to send the word out, but even though that's probably true, it's not what's kept me away. In all honesty I needed a bit of a break. There's something absolutely exhausting about summarizing the most difficult period of your life on a regular basis. Luckily Sarah stepped in with a beautiful post in my absence. Not to worry though, I'm back and re-energized. Our wonderful trip to Palm Springs and, more recently, the Sarah Furlano Cancer Benefit have me feeling renewed and ready to type. Thanks for your patience everybody.

Now, let's get to the benefit! Yesterday was the big day. We've spent the last month or so planning out a benefit with the help of our friend Katherine Upshur. The idea was to raise money for the mounting medical costs, and our projected cost for this whole experience. Well, that was part of it. The other part was to host an event that not only celebrated life, but gut gave all of our friends an opportunity to come, show their support, and see Sarah.

Many of the people we know have really expressed an interest in helping out, but at the same time everyone is worried about being a bother. We don't see people that way, but I certainly understand. I've been on the outside looking in several times in the past and have felt the same way. This was our chance to give our friends and family in the area and abroad an outlet to show their support. We figured that there was no better way to celebrate life, and nothing more true to ourselves, than a concert event.

The planning was grueling at times, trying to figure out how to put together a music event coupled with a silent auction, but Katherine really stepped up and drove it home. We had almost more donations than we could handle for the auction, and each of them were both generous and incredible. We could not be more thankful for the wonderful items that people poured into this event. Also, this auction would not have been possible without all of the fantastic volunteers who brought it to life when the doors opened.

The event was held at a local blues bar called Moe's Alley, which is of legendary status in the area. My company Universal Audio helped make this happen. I had asked the President of the company, Matt Ward, if he could help us negotiate the price of renting the club for a day, because my company is pretty well know in the music industry. He replied with "how does nothing sound? We'll take care of it, it's the least we can do". For a company to show that kind of compassion, and in the middle of a recession, was both touching and reassuring.

We decided to have two bands play the event, and I was honored and flattered that Sarah asked my old band, Space Heater, to play the event. We chose another band that Space Heater had some history with, Naomi and the Courteous Rude Boys. They are an amazing Santa Cruz band that tours all over the west coast, and they accepted the invitation graciously. Everything was coming together.

We topped off the roster with our friend JD Kaiser who is a great local DJ. He was set to spin records when the bands were off stage. Finally, our good friend Emily Quirk signed on to MC the event. This came naturally to Emily, who is the host of a local radio show. We had an amazing cast for this performance, and it showed. The event when off without a hitch. Well, that's not exactly true. There were mini-hitches galore, but our crew of volunteers were unstoppable.

It was a magical day of fun, music, unparalleled generosity, and best of all children. This famously dark blues club was transformed into a Sunday afternoon playtime extravaganza. There were markers and stickers, hula hoops and dinosaur tattoos, juice boxes and little dancers all over the floor. It made for a scene that I'm sure Moe's Alley wasn't expecting, but the crowd was loving it.

The crowd was a mix of our entire history in California. Friends we've met from the last six years, from all different groups and corners of this area came out to show their support. It was a cathartic experience for both of us, and it was an honor. Thanks to everyone who was involved in that wonderful day.

I've spoken often on this blog about ups and downs throughout this experience. Unfortunately, we are never immune to the balancing act, and the roller coaster never stops. Today was Sarah's routine blood draw, where we find out how her white blood cell count is doing. This time it has dipped so low that tomorrows chemo treatment will have to be postponed. She will need a series of shots to try to bring it back up, and these are shots that make the bones hurt from the inside out. Our main concern is that she will not be able to get chemo until next week. Even though that only puts the end date off by a week, it is still difficult to hear, especially when a week in pain can feel like an eternity.

It is always hard to get bad news, but I suppose that when placed next to such an amazing weekend of family and friends, it's a little easier to swallow. I'll be back on the blog in few days to let you know what's happened with the blood cell count, and also to post some pictures from the benefit.

As always, it's been a pleasure writing for you,

Dan

Some new Pictures. Enjoy!

Letting go to be reborn again.....

Hello All! This is Sarah writing again. I thought that I'd be on here more often but it just hasn't been the case. I have beautiful, but empty journals....I just haven't been moved to do much writing. I prefer a phone call instead, so please don't hesitate to call me....don't worry about waking me up, as I'm not sleeping during the day. I believe that all the phone calls to my mom about my condition are wearing her out...along with a certain 2 1/2 year old!!! If you could direct your inquiries directly to me, that would be much appreciated...Plus, I'd love to talk to you all myself. I'm very candid and honest about what I'm going through....I'm not afraid to tell you how much most of this sucks or to use you as a shoulder to cry on. I'll also be the first one to share with you how stoked I am to be feeling well the days I do!!!!

I have had to do a lot of letting go throughout these past two and half months. I am wise enough to know about how healing this can be...that I'm clearing space for the new, etc... However, there is a lot of grief that goes along with it. With grief there are tears....tears that are neither sad, mad, nor happy... I haven't been able to assign them an emotion as of yet...they just are. They are tears that I don't want anyone to take from me, as it would disturb their natural flow. I'm looking for people to merely witness them, honor them, bless them, and let them serve their purpose. I don't want to feel bad about having them, as I know it can make some uncomfortable. Being with someone and not trying to take their pain away is an incredible feat, being able to do this is the sign of a great healer. I know how strong I am, I'm not giving up, and I will make it through this! Don't ever doubt that, I don't! I whole heartedly believe that the most courageous individuals are the ones that show their vulnerabilities and their shadow sides freely. I'm not here to hide these parts of myself to anyone.

The treatments and procedures I'm enduring are difficult. I take them one day at a time, sometimes wishing that I wasn't going through it. The chemo makes me feel sick and just plain weird, it leaves my mouth full of sores, I feel nauseous, fatigued, and get horrible heartburn, it also tends to bring on a lot of the tears I was talking about. Most of the cancer is surrounding my heart...and I like to think the tears are caused by the cancer shrinking and leaving my body...it needs a way out somehow!

On Monday night, I had a small surgery to get a PortaCath put in. This will save my arms and veins from having to be poked anymore. I was nervous to have surgery again but am so thankful I did it, as it made getting chemo yesterday so much easier. The last time I had chemo, I had to have four IVs placed...one of the veins was so irritated from the chemo that it flared, and the IV had to be moved. I've been needing to take pain medication for it to be bearable...I can feel the vein from my wrist all the way up into my face....guess it can last weeks to months. Anyway, the surgery went well...I came home that night and felt like nothing had happened. However, I woke up at 4am writhing in pain. I'm on some new pain meds that seem to work much better...Yay!!! Today, it's feeling pretty darn manageable...a little sore, but that's all.

I'm still waiting to hear if I need to get the Neulasta shot this week. The hospital lost my blood on Monday night, so I needed to go in today to get poked one last time...I hope anyway. I would have been too sore for them to pull the blood from my port. Hopefully, next week my poor arms will get a break!! We'll keep you posted about the shot. Last week was absolutely heavenly without it!!

As many of you know, Dan and I were fortunate enough to be invited to get away for the weekend. At first we were going to take Marek with us, but ultimately decided to leave him at home with my mom. THANK YOU, THANK YOU, THANK YOU MOM!!!! (She has gone above and beyond in every way possible....doing only what a mother could do!) On Thursday morning, Dan and I headed out on our first road trip in a long time. I love road trips...I've taken many of them cross country to go to Phish shows and music festivals...I feel alive and free when on them. We drove all day and finally arrived in Palm Springs later that night. The desert has a much different energy than the ocean...the moment I stepped out of the car, I knew I was there to do some powerful work.

On Saturday, Dan, our friend Barbara, and I headed out to Joshua Tree National Park....with some clippers!! Yes, the day had finally come for me to let go of my hair...let go of my past. It has been falling out like crazy over the last month...I couldn't take it anymore! I wore a sparkly skirt, along with my very sparkly silver shoes. We took a gentle hike out to a spot known as the Vagina Vortex...this is a truly healing place...a place to give to the Mother what you don't need anymore, and a place to be reborn. We saged, gave offerings, prayers, and thanks to the Mother, walked a spiral labyrinth and performed sacred ceremony. Then I knelt down in the middle of the spiral and Dan shaved my head....well some of it anyway...our clippers ran out of juice before we could finish. That's cancer for ya, lots of bumps and uncertainty...lots of letting go!! (We have pictures of all of it that we'll post later...I not sure how to do that part!) It was freeing and extremely empowering. I love my bald head!! In fact, I've decided that I look too much like a cancer patient with hats and scarves on...I'm proudly walking around without any hair for all of the world to see! I have nothing to hide!!!!

I feel as though there is more to say, however, in my chemo haze, I have about hit my wall. This might be fragmented and I'm probably leaving some stuff out...chemo sort of has that effect on me. Maybe Dan can fill in the blank spots for you!!

I have so much gratitude for all of you! Barbara, thank you so much for the magical weekend...you were incredibly gracious and selfless. It meant the world to us. Mom, thanks again for being with Marek!! I know that he is an incredible handful right now. I look forward to you just being able to be his grandma again soon!! We love you so much!! Seems like I could spend all my days sending out thank yous...everyone has been incredibly generous with their time, thoughts, prayers, and resources. We could not make it through this without any of you!! We look forward to the day we are able to pay-it-forward!!

All of my love!!
Sarah

When it rains it pours

Hi Everybody,

Yesterday was another milestone for us. Sarah had her fourth chemo treatment, which means she's a third of the way through. This was both exciting and daunting all at the same time. It is nice to know that we have traveled a significant distance, but the road ahead is long and full of uncertainty. Let me back up for a moment and get you all up to speed.

The last treatment was rough. Sarah was dealing with the increasing pain of the $$$ shot, along with a host of new side effects. First it was the horrible taste left in her mouth by the treatment. This sounds minor, but living with it every minute of the day is excruciating. I think candy turned out to be the best remedy in the end. Once that let up, the sores came. Sarah's mouth was full of sores which made it a serious chore for her to eat, and even drink water. The mouth is full of fast dividing cells, which are the cells targeted by the chemo.

Another place we find fast dividing cells is in our hair follicles. This week Sarah's hair began to fall out. She had it cut shorter to ease the transition, and to curb the exodus that had begun. The doctor predicted that this would get worse over the next couple of weeks. This will be one of the hardest parts for me, and I'm guessing for others as well. Right now, Sarah does not look sick. She looks tired, and perhaps not quite herself, but not sick. Not Cancer. We all recognize the bald head as a sign of a cancer patient. It is beaten into our conciousness. Cancer is everywhere. It's in print and on television, surrounding us in our daily lives. Until now I have been able to filter it out with little effort, but that is no longer an option for me. I now must face the images, and realize what they represent. The hair loss is a sign that the fast dividing cells are dying, which means that the cancer is dying as well, and in this I can take solace.

It's time I explain the title of my post, for I have found new meaning in the phrase. We are definitely feeling the weather, and it is spreading into every area of our lives. This week marks the end of an era. After a long and drawn out battle, we've finally put Sarah's Mercury Tracer to rest. It took two tows and four trips to the mechanic to figure out that "the little car that could", could do no more. It was an inconvenient and expensive addition to an already overly complicated atmosphere, and it is hard not to assign the stress and intensity that we are already feeling to all of the ordinary trials and tribulations that life throws our way.

We tried to look at the positive and think of all the great places that little car has gone, from the Telluride bluegrass Festival to the Florida Everglades for the Phish millennium festival. The Tracer served Sarah well, but in the end too much sugarcoating only causes decay. It gets harder and harder to look on the bright side of things, constantly blinding ourselves in an attempt to block out the reality of our situation. I think that we've settled in to our routine, and learned to find our comfort elsewhere. The calls and e-mails, the facebook messages, the meals and the generous donations, these are are where we draw our strength from when the well starts to run dry. You have all shown us that good can flow like flood waters, just as easily as the bad.

I have two bits of good news that I've been saving for the end of this post. The first is about the $$$ shot. After Monday's blood draw we found out that Sarah's white blood cell count was high enough that the shot is not necessary this time around. This shot has been a great source of pain for Sarah, so it is a welcome blessing to skip it this round. It may come back in the future, but we are very thankful for the reprieve.

The other bit of good news is that our friend Katherine Upshire has offered to organize a benefit event for Sarah, which will help with the mounting cost of this experience. We have decided that a music event is the best fit for us, so we're having a concert and silent auction in early May. Many people have offered their artwork and services as auction items, so if any of you reading this would like to donate to the auction please contact me at fulopx2@gmail.com. I will post with more details about the benefit in the days to come.

I can't express strongly enough our gratitude for all help we have received so far.

Thank you for your love and support,

Dan

Pictures

The Straight Story

Hi Everybody,

It has been a while since I've written, so I'm planning to do a couple of entries over the next few days. I'd like to start with a thank you, followed by an update.

First of all I'd like to thank Sarah and Rebecca for there wonderful entries. Everyone has been waiting to hear from Sarah, and they could not have received a more heartfelt and honest address. It all has so much more gravity when the words come from Sarah herself.

My second tip of the hat goes out to Becca. It was a joy having her here with us, and our only regret is that the time went by so fast. Her eloquence on the blog is only matched by the depth of her compassion. Thanks a million Rebecca!

My third thank you goes out to Sarah's Mom Lori, who has given us the closest thing to normalcy that we could possibly achieve in a situation as abnormal as this one. She has worked tirelessly to keep our son Marek as happy and healthy as possible, and for that we will be forever in her debt.

Last, but certainly not least, I'd like to thank all of you who have donated money thus far. It has been our saving grace in a time of true uncertainty. Words cannot display the gratitude we feel towards all of you.

That said, let's get on with the update.

Life has been hard. Not in the ways we we're used to, but in a whole new capacity. The off weeks that we were so thankful for have become less and less of a relief since the Neulasta shots began. These are the insanely expensive shots that Sarah must receive every other week to keep her white blood cell count high enough to receive each subsequent chemo treatment. They are a gift, and a curse. Each shot allows her to move forward in her treatment, but this comes at a price.

The shots cause muscle and joint pain, which lead to more pills to manage the pain. The cycle seems never ending, and the off week has all but disappeared. The low white blood cell count has also brought on a temporary quarantine. Sarah's immune system is compromised, so she can no longer be in public places. The risk of her catching something is too great.

I apologize for painting a dismal picture, but that has been reality for the last couple of weeks. A series of hills and valleys, highs and lows. The deeper we drop, the harder it is to climb. The positive side of this, is the darker it gets at the bottom, the better the view gets from the top. I've spoken of the relative nature of our situation before, and it is reaffirmed with every step we take.

Fortunately I get to end this entry on a positive note. This weeks trip to the Oncologist revealed that Sarah's white blood cell count is up. She can go back out into the world, and if everything goes well, she may not need the shot next time around. The view from the top has changed again.

That's all for now.

Thanks for all the love and support,

Dan