Aftermath

Hi Everybody,

this is perhaps the hardest post I've faced since this journey began. I hesitate to call it a journey, because I'd rather not sully a word so full of possibility with the sadness and strife that cancer carries, but like so much of our lives recently I feel this is out of my control. It is a journey, better or worse. I'm going to begin with our lives as they were 24 hours ago.

Treatment ended on August 21st with Sarah's final radiation therapy session. It was a huge moment. Since January we have been living in the haze of this disease, always looking ahead to the next obstacle, or the next benchmark. Radiation was the final piece of the puzzle, or so we thought. One thing we hadn't really discussed, probably for lack of energy, was the recovery. We had a moment of exhilaration followed by a deep sadness. Treating the cancer is only a portion of the whole. Chemo and radiation take an unbelievable toll on the body. Sarah's oncologist admitted that the next step is where Western Medicine really fails the patient. All of a sudden you are on your own. He explained that it will take the better part of year for her body to rebuild and recover from the harsh effects of the treatment.

I've often spoken here about the distortion of time that we've experienced over the last 8 months. We had been living in slow motion, away from the rest of the world. As soon as treatment ended I could hear that clock start to tick again, but now everything is different. We suffered a fairly severe financial blow from the cumulative expenses of the cancer. Medical bills are only a portion. Sarah's lost wages, added child care, and a myriad of other expenses have been a constant drain. Without the generosity shown to us by our friends and family we would have been without hope, so a big thank you to everyone who has contributed their time, effort or money. We feel truly blessed knowing that so many people out there care so deeply.

Since January we've been in a battle over temporary disability benefits. Sarah has been denied twice, on the grounds that she should be able to work after 11 months, instead of the 12 required. All doctors involved strongly disagree, but it's no the doctors who get to make the decision. Even after we found out that Sarah would have to have another surgery to remove the teratoma in her pelvic region, and even with the lung damage caused by the bleomycin during chemo, our appeal was denied. Apparently 70% of applicants are denied up front, but that's no consolation given our current situation. After two denials we are now required to go before a judge and plead our case. As of Friday morning our case was strong, but now I believe it to be undeniable.

Friday was the final PET scan in the treatment cycle. Sarah drove to Stanford by herself for this one while Marek and I stayed home and waited. The PET scan requires the injection of a radioactive isotope, which leaves Sarah radiating at a dangerous level for hours after. This means she has to stay away from children and pregnant or nursing mothers for about six hours. Scary, I know. This was basically the test that would show us that all of the Hodgkin's was gone, that no active cancer cells remained. It was the final step in the treatment, a formality basically, and a reason to celebrate.

Once Sarah got home we all piled into the car and headed into Santa Cruz to meet our friends for dinner. We were expecting a call from the oncologist with a brief interpretation of the test before we saw him on Monday. This call changed everything. From the first words Dr. Wu sounded concerned, which is never a good sign. The Hodgkin's is totally gone, which is great, but there's something else. The teratoma that had shown no activity at the time of the previous scan was now showing activity. In addition to that there's another mass showing PET positive, which can mean active cancer cells. We see Dr. Wu on Monday, and from there we'll be sent to the Palo Alto Medical Foundation to meet with a new oncology team.

The Hodgkin's is gone, but by some cruel stroke of circumstance there may be a new cancer to deal with. We were standing at the finish line, and when we crossed there was no rest or resolution. I'd like to say that we're staying positive, but it took everything we had to beat the first cancer. This just feels like too much. As of now we are very short on details, but I'll be back here as soon as we have something to report. I would have liked nothing more than to deliver a happy ending to this story, but like through most of this experience we are waiting and hoping for the best.

Until then, thank you for all of the love and support,

Dan, Sarah, and Marek

The Long and Winding Road

Hi Everybody,

it's been a long time since any of us have posted, and I'd like to apologize for that. We have tried our best throughout this experience to keep our friends and family in the loop, but over the last couple of months the exhaustion has overcome our intentions. A lot has happened, and I'll do my best to get you all caught up.

At the time of the last post we were facing the final three chemo treatments. The side effects of the treatment had gotten progressively worse, so even a small number like three seemed absolutely daunting. In the past I've discussed, sometimes exhaustively, the mindset of our cancer situation. Well, here I go again. As we move from treatment to treatment, from waiting room to waiting room, we don't feel that we're getting closer to the end, just farther from the beginning. Time has taken on new properties for us. Not frozen, but definitely slowed. After the rush of the first few months, with constant appointments and phone calls, with highs and lows that were previously unimaginable, things start to plateau. Forward motion retreats from our consciousness, and cancer just becomes a way of life. There have been different people in and out living with us, that have made our survival possible. Their arrivals and departures are like the place markers in my memory of the chemo chapter of our lives, and I am eternally grateful to all of them for this gift.

After months in the groove, treatment ten pushed us over the edge. Each treatment seemed to have its own style, in that Sarah's reaction was always different. Some were gentle, and others were not, but the tenth hit her like a freight train. I had never seen her that sick, and I hope I never have to again. She was in bed for days, yet unable to sleep. There was pain from inside her bones coupled with unbearable nausea. This was the first time that she expressed to me, "I don't know if I can do this anymore". It was a horrible couple of days, and the reprieve stayed in the distance for far too long. There was nothing I could do but be there with her, and it was the absolute low point of the last six months.

The pain retreated to it's normal level of uncomfortableness and the nausea eventually passed, but something new had surfaced in its stead. At our next appointment with the oncologist, Sarah informed him that she was having trouble taking a deep breath. The problem wasn't that it was painful, or even that she was short of breath, but that at a certain point the breath just stopped. This was scary for a couple of reasons. The first is that Sarah is young and breathing is, well, kind of important. We take about 1440 breaths per day, so it's not really something you want to mess around with. Secondly, one of the drugs in Sarah's chemo regimen is known to cause lung damage. The drug bleomycin causes scarring in the lungs, which is generally unnoticeable to average person. Athletes being treated for cancer are not given this drug, because the damage could be career ending, but for those of us who are not running marathons, it's not supposed to matter. Apparently this is not always the case.

Dr. Wu's reaction alerted us to the seriousness of the situation. The chemo session set for later that afternoon was canceled pending a CAT scan and a breathing test. It had been a while since we'd ventured into the unknown, but here we were, back to waiting rooms and imminent yet undefined phone calls looming overhead. Though the possibility of permanent lung damage was a horrifying thought, the potential of a pardon from the last two chemo treatments filled us with hope. (I was going to call it a breath of fresh air, but that's a little much, even for me) I'll be honest with all of you reading this, chemo was hell. It reached deep within us all, and it squeezed the life out. It's like being under water, where everything moves more slowly, all the of the sounds from above lose their clarity, and ultimately you feel out of place and like you're running out of time. The idea of surfacing, even if just for the duration of a postponement, was heaven.

The tests were quick and fairly painless, and our answers came quickly. On a Friday Dr. Wu left us a message which in short told us that chemo was off for now, and we'll talk more at our appointment on Monday. That was a long weekend, filled with speculation. We had seen the results of the scans and now knew that there was decreased lung capacity, but no permanent damage caused by the Bleomycin. This news was great, but we weren't quite sure where it left us. Was chemo over for good or just postponed further? In our minds chemo was over. It finished with a an earth-shattering bang, painful and tear ridden.

On Monday we found that Dr. Wu saw the situation in a similar light. If the cancer comes back, it can be treated again, but the lung damage would be irreparable. Sarah is only 30, young and looking forward to a healthy and active life. It's hard to achieve either of those goals without your lungs. Suddenly, and rather unceremoniously, we were done with chemo.

This was followed by three weeks of recovery time. No needles and no doctors, it was the closest to normal we've been in a long time. I would have liked to have posted all of this earlier, but that last six months have been so draining for us, and for everyone around us, I couldn't bring myself to type a word.

After a long period of guessing what radiation was going to be like, we finally had our consult. The doctor was very nice, straightforward and honest. She laid out all of the facts, the most daunting of which were the side effects. We had long been under the impression, as are most people, that chemo was the build and radiation was the release, but this is not the case. The side effects can be severe: burning of the inside of the esophagus, inflammation of the heart, burning of the skin, and so on. The radiation is every bit as destructive as the chemo, but it is very localized. We're dealing with lasers now instead of I.V.s, and it's still very intense. Sarah is slated for three-and-a-half weeks of treatment, going five days a week.

We have been getting congratulated by our friends and family for finishing treatment, but it's far from over. Radiation does not run in waves like chemo did, instead it has a cumulative effect. Sarah's side effects will peak two weeks after her treatment ends. The seriousness of this leg of the treatment is disappointing, but as melancholy as this sounds, we're used to it. We have started to look ahead to recovery and are trying to figure out what that means for us. Our oncologist told Sarah that she is looking at a full year of recovery time, and admitted that this is where our health care system really fails. Once treatment is over there is no direction or assistance in rebuilding your body, and your life in general. You're just sort of left holding the bill. Luckily we have numerous friends and family members that work in the healing arts, who I'm sure we'll be calling on for advice. I generally like to end my posts with a positive, which gets harder and harder as the experience grows deeper. One thing that we really look forward to is using this experience as motivation to live as healthy of lives as we possibly can.

Now that I'm back on the Blog, I'll do my best to keep you up to date. Until then...

thanks for all of the love and support,

Dan

Living With Cancer

When I started the blog I knew I would not be writing an entry until I had spent time living with Sarah’s cancer. After being with Sarah, Dan and Marek over the past 10 days there are some things I want to share with all of you.

This family is amazing. This family is strong. This family is struggling. This family will persevere.

I arrived Thursday on a non-chemo week. I walked off the plane and was greeted by my best friend, bald and smiling. I knew she would be bald but seeing it in person still took me aback. Albeit some of the light in her eyes had dimmed, staring back at me was my friend of almost 12 years. Her smile and hug were the same but her energy was different, not bad, just different. During the duration of my stay I learned how living with cancer has altered my friend.

On Friday we went to Stanford for Sarah to have her PET scan. While Sarah went radioactive, Dan and I had the chance to walk around Palo Alto and chat. Dan Fulop is the most wonderful, loving and courageous husband I have ever met. He has endured this journey with grace and patience. He is a wonderful provider and caregiver. As a father he is patient, loving and Marek’s hero. But his world is dictated by cancer, and it is exhausting.

The results of the PET scan came back clear, the cancer is loosing! However there is potentially a teratoma tumor by Sarah’s ovary. Having the tumor would mean that Sarah would need yet another surgery after the chemo and radiation. SERIOUSLY how much more can my friend be asked to endure at the moment?

On Saturday we spent the day enjoying California and each other. Sunday Sarah and I spent the day at the Spa (thank you Dan for the mother’s day gift). I could not have asked for a more precious day. We relaxed and enjoyed the wonderful sunshine. We talked about all that is going on and I was able to hear in person just how very hard this experience has been on the whole family.

Monday we attended Marek’s preschool graduation. As wonderful as the day was, the knowledge that chemo was less that 24 hours away was palpable. Dan and Sarah filled me in on what to expect both at chemo and the days to follow.


Tuesday - chemo day. I sat with Sarah as the chemo entered the port in her chest and I saw first hand why the light in her eyes had dimmed. For three hours every two weeks poison is pumped into her veins. This day was her 9th time enduring the steroids that make her want to jump out of her skin, but are necessary to help stave off the nausea. This was the 9th time she had to have three different drugs designed to kill everything in her body forced in through a catheter in her chest. This was the 9th time she had to sit still knowing the pain and exhaustion that would follow for the next couple days.

She still has 3 more to go.



We left chemo and headed home. Sarah was beyond exhausted. We had some lunch and she fell asleep in the couch. She spent the remainder of the day in and out of consciousness. Marek and I walked to the market and down to the beach.

As we walked he quietly contemplated what was going on. Every once in a while he would state “mommy doesn’t feel good” and each time my response would be the same, “no honey she doesn’t”. As a two year Marek is very smart. He is a problem solver, a linear thinker. He loves puzzles and can put together a 24 piece puzzle by himself. He likes to line up his toys in a straight line. He tries very hard to understand what is going on with is mom.

But he is still a two year old and when he is tired all he desires is “a baba, a boobie, a blanket and a rock-a-bye, all those stuff”. On chemo days Sarah cannot give him a rock-a-bye because she cannot sit up. As Marek began to melt down and beg for "all those stuff" I had to sit back helpless and watch this poor little boy sob as he grappled with wanting the rock-a-bye and not be able to have it. I had to watch his mother agonize over not being able to give him what he needs.



Wednesday morning I woke up and went upstairs to find Sarah and Dan getting ready to go into the clinic to get the dreaded shot. The shot that makes every joint in her body hurt as her bone marrow is forced into producing new blood cells. Upon their return Sarah sat on the couch and tears came to her eyes. I sat next to her, held her and cried along with her. Our friendship has always been one where if one of us is crying the other cannot help but cry along. For the past few months Sarah and I have cried on the phone more times that I can remember. It has been torture to be so far away from each other during this process. It felt beyond amazing to be able to sit and hold her as we cried.

Dan stayed home from work to care for Sarah and I took Marek to the Aquarium, or as he says “the baquarium”.

This day trip was wonderful for all of us. Sarah and Dan had the time to just be together and Marek and I had the chance to have some time alone. Sarah and I decided when she was pregnant that Marek would call me “ciotka Molly” (pronounced chuch-cha) which is polish for aunt Molly. There is nothing sweeter in this world than to have a two-year-old holding your hand and look up at you to say “we having Marek and ciotka Molly time”.

Thursday came and Sarah began to return to her self. Still groggy, but able to keep her eyes open for longer periods of time. Mostly we spent time in the same room as each other enjoying the close proximity. Friday we were able to go the resort for lunch, enjoy the weather and have dinner with a friend.


On Saturday morning before I left we walked the beach and talked about the future. Once this chapter is over, Sarah will continue to have scans every 3 months and then every six months for the next two years. Once two years has passed she will have scans once a year.

The chemo itself makes her more susceptible to leukemia and other types of cancers. As we talk about the future we acknowledge that Sarah will always be living with cancer. This fact is what has truly changed my friend, but in my opinion it has only made her stronger, more grounded and if possible, more loving.



Sarah, Dan and Marek, I love you more than words can express. I am honored to have spent this time with you.

Love
Molly

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