Set the gearshift for the high gear of your soul

Hills and All

2011-09-14T07:26:00.000-07:00

I’ve been trying to write this blog entry for almost 2 years now. At first I just needed a break from blogging, as I was trying to pick up the pieces of what my life had become during treatment. Honestly, I fell into a deep depression. The first six months after treatment were some of the darkest moments of my life. During treatment, time seemed to almost stop and it felt as though I was in a cocoon protecting me from everyday life. As soon as treatment ended, the ticking of the clock was deafening, life was beating down my door. I, however, was broken into a million pieces and had no idea how to pick myself back up. I felt alone and abandoned by the incredible support I had during treatment. All of a sudden my weekly doctor’s appointments turned into 3 month check-ups. My oncologist, nurses, medical assistants, and even receptionists had become a huge support system. I will never forget walking away from my last chemo treatment to a standing ovation from every single person that worked in the clinic.

My friends and family were elated that I had made it through cancer alive, and rightfully so. I know everyone was searching for some sort of normalcy after that hellish year, but I had not even started processing what had happened. The denial and shock that allowed me to put one foot in front of the other was no longer there. I felt as though my life had been reduced to the fact that I should just be happy to be alive. Somehow, I felt as though that should be enough for me, but it wasn’t. I thought I might have some great optimistic outlook on life, where the small stuff wouldn’t bother me anymore, but I didn’t. I walked around like a lost puppy dog, trying to figure out how to make it through the day. Today, I don’t feel quite as lost, but the pain still exists and the tears still flow on a regular basis…my healing continues.

If there is any area in cancer care that is lacking it is in survivorship. I have struggled through the last 2 years, trying to not only make sense of the emotional impact cancer has had on my life, but also the physical impact. My bones and body still ache on a daily basis. It feels as though I’m about to get the flu. Sometimes this is manageable. Other times it brings me to tears because I just want to feel some sort of peace and quiet within my body. Chronic pain is a world I have become very humbled by.

The Chemotherapy has also led my body into a peri-menopausal state. My cycles have become longer and longer and the bleeding time is getting shorter and shorter, currently, less than 24 hours. I’ve been experiencing all the ‘fantastic’ menopausal symptoms that accompany this transition in a woman’s life, including bone density loss. I have officially been diagnosed with osteopenia, which helps explain why my teeth have been crumbling and falling out. My dental bills have been enormous! My regular dentist will not perform any of the procedures because the chemo and radiation have changed my bone structure in a way that he does not feel qualified to deal with, so off to more specialists.

Honestly, the menopause ‘stuff’ has been the hardest to deal with. At 32 years old, I am not ready to walk that path. I desperately want another baby at some point and would love to accomplish that without it being a huge medical ordeal. Along with the intense grief I feel surrounding this, I also feel anger…. a lot of it! I can say truthfully that this is the first time I’ve felt anger around my cancer. There’s actually something that feels potent and healthy about it. This anger seems to mean business and I believe it will be the energy that carries me though this storm to a more empowering place.

One way I’m taking my body back from cancer is training for the Nike Women’s Half Marathon in San Francisco with the Leukemia and Lymphoma Society’s Team in Training. I’m going to do something I never thought I could do and something my oncologist told me I would never do after chemo. Remember the drug in my chemo cocktail that affected my lungs so severely that I had to end chemo two treatments early? Well, in my patient education session before treatment, I was told that I would never be able to run a marathon after receiving this drug. At the time, I didn’t think much of it. Running a marathon was never an aspiration of mine. After I prove to myself that I can do this half, I’m moving onto a full marathon….I’d like to show up at my 3 year check-up and report that Bleomycin couldn’t keep me down.

Marathon training isn’t something that’s new to me. My Dad was a marathon runner. I remember marveling at the distances he ran when I was child. The summer before he died, my dad and I would run a mile together after dark. I have missed my dad so much through all of this. Running has given me a way to feel very connected to him again. I can feel him with me. When it came to deciding which race I was going to run, it was a no brainer. I chose San Francisco because my dad LOVED running in San Francisco and I wanted to experience it with him….hills and all!

Besides infusing my heart with the closeness of my dad, running has been an amazing way to find some peace in my mind. Even though my mind races with all of my usual brain clutter for the first few miles, something magical happens after that…peace. It’s almost an out-of-body type experience. I try to bask in it as long as it is possible. I find that when the chatter comes back, it is usually a reflection on what is amazing in my life. It changes my whole outlook on the day. I go on with my day in gratitude for my wonderful husband, son, and the life we’ve created together. I think about how much I love my mom and sister. I was born into an amazing family, including my grandparents, aunt, uncles, and cousins. I spend time in reverence for the friends I’ve been blessed with. In fact, my friend Charissa decided to embark on this Team in Training journey too, in honor of me. I reflect on what a privilege it is to do the work that I love to do and that I’m given an opportunity to serve others in such a powerful time in their lives. As a lactation consultant, I get to hold brand new life every shift I work. It is a powerful reminder that I too was given a chance to be born again.

I have Team in Training to thank for facilitating my love of running. They have provided a safe and encouraging space to accomplish this. I am humbled to be one this season’s Honorees. I have had an opportunity to share my story with others, which in and of itself is incredibly healing. The kindness and support that exists on my team is amazing. One of the biggest blessings has been meeting others with blood cancers. In fact, one of the women on my team went through Hodgkin’s treatment 10 years ago as a young mother, just like me. We immediately connected on so many levels. She understands what I went through in a way that not many others do. It helps me to not feel so alone, which makes this whole experience worth it.

And now, I humbly ask you to support me once again in my healing journey. Your donation to the Leukemia and Lymphoma Society will not only benefit me, but all of those that have yet to receive their diagnosis. My hope is that with research, the road to healing from blood cancers will be a little more bearable and the long term side effects a little gentler. Thank you for listening and for your continued support.

With Love and Gratitude,

Sarah

The Monkey Tail

2011-09-02T15:29:00.001-07:00

Hi Everybody,

this week I put a special fundraising challenge out to all of my colleagues, so I thought I would share it here. I began by appealing to everyone's altruistic nature, much like in the last blog entry. Though this can be effective, I figure that offering to humiliate myself for a good cause may push the needle with a little more vigor.

To make things a little more interesting, if we can hit our goal by next Friday, 9/9/11, I will humiliate myself for your enjoyment. I will shave the full and fantastic "beard of Dan" into a cute and fluffy monkey tail. I will wear the tail around the office all day, and will be available for photos if you want your picture taken with it. These pics will inevitably end up on Facebook and on this blog for all to enjoy.

not me, btw

Monkey tails aside, training is going really well. Both Sarah and I are doing things we hadn't thought possible. Sarah is up to 8 miles and I have reached 16! The race is only 6 weeks away, so it's time to kick our training into high gear. Next week Sarah will be running 10 miles, which is very exciting. Hard to believe that she is able to do this only two years after treatment. We are all very excited and very proud of her.

Until next time...

Thanks for all the love and support,

Dan, Sarah, and Marek

You've got to run like an antelope, out of control.

2011-08-21T21:29:00.000-07:00

Hi Everybody,

Today marks the two year anniversary of Sarah's completion of treatment. It was shortly after that, that we let the blog fall. This was not really done intentionally. It had just become unsustainable. We created this blog to keep everyone informed, and because so many of the people we care about live elsewhere around the country. After treatment was over, we needed to get away from cancer for a little while. Not that that's possible, but you can't blame a guy for trying.

I have been attempting to write this entry for months now. Each time I sit down at the computer, I find myself trying to summarize the last two years. I try to find an eloquent way to describe what recovery has been like for Sarah, but instead I basically churn out a never ending paragraph of emotional vomit. Too much? I agree, but very accurate.

Tonight my approach is wholly different. The only reference I'm going to make to Sarah's cancer is to tell you all that she is still clean. Sarah get's blood work done every so often to check on her blood cell count, and she has passed each test with flying colors.

We wanted to resurrect this blog for a couple of reasons. The first and foremost is to let all of you reading know that Sarah is still cancer free. The second is to tell all of you about our involvement with Team In Training. For those of you who don't know, Team In Training is the Leukemia and Lymphoma Society's endurance sports training program. In Exchange for training and support, you help raise money towards cures for blood cancers like Leukemia, Myeloma and Lymphoma.

Only two short years after finishing treatment, Sarah is training to run a half marathon. And for some reason beyond my own comprehension, I'm training for the full marathon. We will be running in the Nike Women's Marathon in San Francisco on October 16th. There are many reasons why we're doing it. I'm not going to speak for Sarah here, but after all of the generosity we were shown by friends and family, this feels like a great way to pay some of that forward. There used to be a donate button on the side of the blog, that many of you so generously used to support us during our time of need. It has now been replaced with a link to donate to Team In Training. We will be attempting to raise $4000 dollars to help fund research, and also to help support families much like our own.

From here on out, for an undetermined period of time, we will use this blog to share our experience with team in training. We will also, I'm sure, circle back around to the last two years and take a look at what Sarah's recovery has been like. It's too great a subject to broach in one post, so perhaps it will have to run hand in hand with our stories of triumph. There is no returning to life after cancer. Only the creation of a new one. In the spirit of creation we have given the blog a new look, and a new name. For those of you who are unfamiliar, the name comes from a lyric from one of Sarah's favorite songs.

Set the gearshift for the high gear of your soul. You've got to run like an antelope out of control. - Phish

Until next time…

Thank you for all of the love and support,

Dan, Sarah and Marek

Finally.....

2009-09-17T07:02:00.000-07:00

...the news we've been waiting for!!!! The results of the CT scan are in...no signs of lymphadenopathy, for us non-medical individuals, that means no disease of the lymph nodes!!!! I remember reading the report of my very first neck CT scan looking at the first lump I found in January. I saw "extensive lymphadenopathy" and quickly googled it...when I saw it refer to lymphomas, I brushed it off. I didn't think there was any possibility that I had cancer. I still had hope that there was an easy explanation...one that didn't involve cancer treatment.

However, this time around, when I read the words "possible lymphadenopathy" on the PET scan report, there was NO way I could brush it off and stay grounded in the fact that it said "possible". I knew too much. The last thing anyone just finishing cancer treatment wants to hear is that there's possibly more cancer. It felt as though my heart fell to the ground and my stomach turned inside out. I was beyond devestated.

I looked into the back seat and saw my sweet, sweet little boy. More than anything, I didn't want him to have to go through any of this again. I am amazed at the strength and resiliency he has, but the last nine months have taken it's toll on him. It has been so great to see the sparkle in his eyes come back! He has also started breastfeeding again....that was his sign of mommy getting better. In fact, when I came home and told him that I was done with chemo, he reached out both of his hands, touched my breasts, smiled ear-to-ear, and said, "now I can have my boobies again!" I didn't know how I was going to tell him that we had to wean again. (For those of you wondering, I don't really have any milk left after not bfing for 6 months, but he doesn't care...he tells me they're a "little bit dry" and goes back to nursing.)

Most of all, I was really afraid of dying, and ultimately leaving Marek. Being someone that lost one of her parents as a child, this broke my heart into a million pieces. I didn't want Marek to grow up without his mommy. I realized there was a certain level of security in Hodgkin's (thanks to modern medicine, not many people actually die from the disease)...unfortunately, that doesn't exist in cancers of the pelvic region. I know that may seem like an extreme place to go but, as a mother, every cell in my body is programed to protect my baby (or preschooler!).

Needless to say, it was a really long weekend. We were really sad!!! Thank you so much for all of your support...your prayers, healing vibes, generosity, and sincere concern have carried us through these six hellish days. We really appreciate everyone holding the space for us. In the last nine months, I have felt a grace that I didn't know existed. I have always been a big believer in the energetic nature of the universe....to feel the power of prayer and intention put forth by so many people is nothing short of magical. It has allowed my heart to grow in ways I'm not sure would have happened otherwise. I am a better person for it.

So...what's next? Well, the masses in my pelvis are fairly large, so I will still be transfered to the gyn-oncologist. I learned from someone yesterday that he is one of the best gyn-surgeons in the Bay Area. I was really stoked to hear that because one of the masses has stuck itself to the fundus of my uterus and another one is attached to my ovary. Dr. Wu threw around the word hysterectomy a few times on Monday when talking about the possibilities of what was to come. I would be absolutely devestated to have to go through that but, unlike the possibility of cancer, I'm willing to cross that bridge when we get to it.

I have my appointment on Monday afternoon, so we'll let you know what happens. Until then, I'm going to a prenatal appointment for a couple I'm acting as back-up doula for this afternoon, going to see live music with some girlfriends Friday night, and going to a "princess party" on Saturday for one of our favorite 3 year olds....I will be celebrating LIFE!

With the utmost gratitude and love......
Sarah, Dan, and Marek

Just Waiting....

2009-09-16T06:12:00.000-07:00

Hi Everyone!

This is Sarah writing...thank you so much for all of your support!!! It means so much to us. I know that we couldn't have gotten through this without it.

We still don't know a lot about what is going on. I left Dr. Wu's office feeling a little bit better than I did over the weekend (it was a LONG weekend!) He thought that the odds of me having ovarian or uterine cancer was very slim and that he doesn't suspect a recurrence of lymphoma. That was the news I was hoping for...it has allowed me to sleep better at night. It has left us all wondering what the heck is going on...even Dr. Wu!

I'm drinking what feels like to be gallons of barium right now...yuck!...in preparation for a pelvic CT scan this morning. On Monday, I'll be meeting my new gyn-oncologist. We'll let you know what comes of that consult sometime early next week.

This has been an eerie place to be in again, and has taken a few days to get used to. I'm hoping and praying for the best! As always, thank you so much for your sincere concern!!

Lots of love and appreciation!
Sarah, Dan, and Marek

Aftermath

2009-09-12T16:13:00.000-07:00

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

2009-08-08T10:02:00.000-07:00

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

2009-06-07T10:18:00.000-07:00

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

2009-05-04T19:41:00.000-07:00

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!

2009-04-15T10:07:00.000-07:00

2009-04-11T20:36:00.000-07:00

Letting go to be reborn again.....

2009-04-08T14:29:00.000-07:00

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

2009-03-25T22:45:00.000-07:00

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

2009-03-14T14:08:00.000-07:00

The Straight Story

2009-03-13T16:56:00.000-07:00

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

A Note From Rebecca

2009-03-07T16:42:00.000-08:00

Hello to all the readers of this blog. This is Rebecca writing this time. For those of you who don't know me, I am Sarah's younger sister. I have been staying with Sarah, Dan, Marek and my mother since Tuesday. I fly back to Chicago tomorrow, where hopefully signs of Spring are anxiously awaiting my arrival.

I feel honored and privileged to be writing in this blog, using the same chair, same computer where Dan and Sarah have written already, sharing the story of what has become their new life, their new way of moving through this crazy world, that unfortunately came out of nowhere and with no directions.

I am excited to share my side of the story, my personal account as to what it is like seeing my sister, my best friend, go through this process called cancer. Seeing her for the first time on Tuesday was bittersweet. Her physical body looked exhausted and in a lot of pain. It looked like she had been losing weight, a little pale in the face and a sadness in her eyes that this day, Tuesday, was one of the "hard" days. I knew she was feeling the effects of the shot, as every tiny movement she made seemed to send slicing pain through every inch of her body. I could feel the lump of tears gather in my throat when I saw her. A fiery weakness came over me and I wanted to throw up my hands and scream into the sky that it's not fair, that this isn't supposed to be her life, this isn't supposed to be our life. But it is her life, our life, and this week has taught me many valuable lessons as to what it actually means to be alive.

When we got home from the airport, Sarah needed to rest. She was in so much pain, I told her to lie on the floor and I would start doing some bodywork on her. I stretched her legs, and started doing Tui Na on her back, trying to move some of the stagnation that had become stuck in her joints. It felt so good to be physically touching her, giving of myself whatever healing energy I could to make her feel somewhat more comfortable. At one point, she began to cry a little. She said to me she felt like apologizing, for being like this, for being in the state she was in. I could see why she would want to say that. Most people with hearts like hers want the last thing to be someone else hurting because of their pain. I see this in her urgent will to make sure Marek gets taken care of through this, that he experiences as little pain as possible.

I immediately reassured her that I love her just as much as a sister with cancer, vs. one with no cancer. Being in a place of total vulnerability and pain and having someone to love us just the same is to me, one of the greatest gifts. I see that my sister has not one, but many of those in her life. It is one of the few things that brings me peace when I think about her journey.

Wednesday was a "better" day. She had taken advantage of the pain medication given to her, and was finally able to get some relief for the excruciating pain that had been occupying her entire world. We went on a walk that day. A long walk in fact. A walk that, for that day, changed my consciousness about life. We walked through a gated community with incredible views of the ocean and surrounding forests of Santa Cruz. The temperature was in the 60's and the clouds were scattered over blue skies . It was supposed to rain the whole week I was here but instead we had the opposite. Sarah said the walking really helps with her sore joints and it feels good for her to get out of the house and move her body. As we walked to the top of one of the big hills, I remember looking over at my sister, my mother, and with eyes bright, mouths open, we were all laughing. One of us would say something and it would continue the laughing, the kind that you feel in your belly. For that short second, a tiny slice of time, all of the stress of the last months seemed to be suspended. She wasn't in pain, she wasn't getting chemo, she didn't have cancer. I soaked it in, letting it flood my memory so I could go back to it in the future. After we stopped laughing I thought to myself, wow, what an awakening lesson. Isn't this how life should be, just a bunch of moments we should be grateful to have? Easier said than done right? I know, it's a hard mind frame to stay in. But for that walk, my life consisted only of those moments. Laughing outside on a walk with people I love.

After that walk, Sarah and I have been on that same 2 hour walk every morning since. It helps her a lot with the stiffness and pain, and it's a much needed release for my sluggish Chicago winter body that hasn't seen much exercising in the last few months. We talk about the journey she is on, the immense amount of strength she is going to need to get through the next 10 chemo treatments, the next 9 shots and the weeks of radiation to follow. We talk about how crazy it is that this is real, that this is actually a part of our history now, I am disappointed I can't go to chemo with her on Tuesday, I would like to know what she goes through during that process. But after being out here a week, I have gotten a pretty good grasp on the reality that is not just her life but Dan's life as well, along with my mother's for the time she is out here. It's not easy to think positive all the time and to smile and say "well at least it's a treatable cancer." It's hard for me to do that sometimes. It's hard find comfort in the "At least its not..." scenario because I can't go to any other scenario that the one she is in and the one she is in involves 8 months of chemo and radiation and shots of Neulasta that cause severe muscle and bone pain. But maybe that is just my way of grieving at this time. If anyone has a knowing she has the spirit and drive to get through this it's me, but it doesn't always take away the "real life" sadness I feel as I watch my sister and her family go through this.

I have been doing various types of bodywork on her, including myofascial release, deep tissue massage and tonight we are going to do a craniosacral session. She has been experiencing a throbbing pain in her left arm that is most likely due to the chemo infusions as well as the injection site for the Neulasta shot.

I know she is bummed that she can't go out into public right now because of her low white blood count and we talked about it today on our walk about how ironic it is that she is only allowed to be in her home or in nature. Frustrating for sure, but interesting that her healing is forced to take place where most of us should spend most of our time anyway. At home with our family and out in nature. Being under that same roof with my family for a week as well as being out in nature every single day is something that hasn't happened in years. What a nice reminder as to what is truly important.

I want to thank all of you who read this blog for your continued support for in helping my sister and her family through this incredibly challenging time. I know some of you have been trying to reach me through this process and I apologize for not being the easiest to get a hold of. My schedule with school and work is a little random, but if you'd like to reach me my email is rebecca.furlano@gmail.com and my cell # is 920-412-0377.

It will be sad to leave tomorrow, but this week has been very healing, sad at times, but healing. I will miss them with all of my heart. I think I am going to start going for walks once back in Chicago. For me, and my sister.

A note from Sarah

2009-02-28T08:30:00.000-08:00

Hey Everyone!

I realize this is my first time writing on the blog...it seems long overdue! The phone has been the easiest way for me to communicate thus far. I start writing and the words just don't flow, whether it's on the blog or in one of my many beautiful journals. And, now I have a tough act to follow. My love, Dan, has been doing an amazing job with this so, I've left it to him...until today.

It's been one month to the date since we were sitting in Dr. Gurney's office hearing the words Lymphoma for the first time. She was so kind, gentle, and compassionate that it makes me think of being in a similar place, with a similar gentle doctor, giving me a similar kind of life changing news...on March 1st, 18years ago tomorrow, my dad passed away while we were away on a special father-daughter ski trip. However, this time, I wasn't a twelve year old child, sitting alone, six hours away from home, rather, I was looking into my loving husband's eyes.I felt safe. For that, I'm so thankful!!

As you've read, I've had a whirlwind of doctor's appointments and needles stuck in me. The physical pain is uncomfortable but doesn't compare to a lot of the emotions I've experienced, mainly around my son. I am a 30 year old mother with the most precious two and half year old that you've ever met...he's the light of my life. He brings joy to everyone he meets and it's with a heavy heart that I have to witness him trying to wrap his head around what is happening with his mommy. Naturally, there's been a different energy in our house....I had surgery on my neck, I lie on the couch and sleep a lot more, I can't pick him up as my vein is healing from my chemo infusion, I don't go to school as much with him, I seem to be going to some appointment everyday, we don't have the same weekly playdates, and most of all, because of my "yucky medicine" we had to wean. I start to cry at the thought of our weaning. Breastfeeding was something that was extremely important to both of us, allowing each of us to experience the ultimate act of love between a mother and her child. I will never forget this sacred time we had together and find myself resenting the fact that it didn't end on our terms!

I also find myself resenting that Marek has to feel any pain surrounding my cancer. I think we all have things we went through as children that as parents that we don't want our children to have to go through...I never wanted Marek to have any pain surrounding a parent, as I did when my dad died. I realize this is unrealistic but......... Thanks to Gramma Lori, our wonderful friends, Erin and Cyrus, who take Marek in as their own, all the wonderful moms, children, and teachers at his nursery school, his best friend, Zoey, and their family, and a wonderfully, generous soul who is donating her cranial sacral services I'm hoping that Marek's load will be lightened.

As many worries and unknowns as there are, I feel as though I have to stay in the present moment. I definitely don't want to go backward, and going forward is too daunting. The thought that I may never have another baby, the mounting medical bills, the possibility of loosing my hair, the thought of new side effects from subsequent treatments, the fear of a different cancer popping up later, the reality that even when I'm finished with treatments I will be frequenting CT and PET Scanners and many more doctor's offices, and that this will forever be a part of my life is just too much to reflect on on a regular basis. It is in the present moment that I find any sort of peace and is where I prefer to stay. It's amazing to me that in my old, daily life, mindfulness was something that was extremely difficult to do, now, it is my saving grace.

I realize this blog entry has been one of my many fears, however, rest assured, that I KNOW I will come out on the other end and the light will be brighter than I could ever have imagined. I already see many glimpses of it. I don't think that I will ever be able to live life as I did before, and that comes with many blessings. I am able to let go of things in such a deep way, a way that not all will have the opportunity to do, and for that I'm extremely lucky.

Thank you to all of you who have been praying for me, sending me healing vibes, bringing my family meals, calling and checking up me, sending me cards with words of love and encouragement, sending uplifting gifts, and generously donating money. We could not do this without all of you!!! I want to extend a special thanks to my dear friend and soul sister, Molly, for setting up this blog so that we can share our experience with you. Molly, I love you! I also want to thank my amazing family!!! Mom, Marek's life wouldn't be the same without you here and I wouldn't have nearly the strength I do to go forward with each day. Dan, you are my rock and your love for me has the ability to burn through all of this darkness and touch my heart in the most intense and healing way. Sister, I don't know what I'd do without you!! Thank you for really listening to me. To all of my grandparents, who call everyday and are praying their hearts out for me, thank you! Janice, I look forward to all of your many calls and can't wait to have you come out to help me for a couple of weeks...thank you! Tom and Alice, I can't wait to see you in April!! And, I can't thank you enough for raising Dan to be the wonderful human being that he is. Deb and Howie, thank you helping us feel not utterly alone! I am filled with so much gratitude for everyone in my life....thank you, thank you, thank you!!!!

I look forward to writing more in the future.

With Much Love!!

Sarah

Round Two

2009-02-24T19:56:00.000-08:00

Hi Everybody,

It's been a while since I've written, and honestly it has been a nice vacation. As we say in the cancer world, no news is good news. We had a great week of family, excercise, and near normalcy. Today the vacation ended, and the news is beginning to flow again.

Let me start with Sarah's blood work from yesterday. She has to get her blood drawn weekly to monitor her white blood cell count. Yesterday the results came back extremely low. This is a common side effect if the chemo, but it requires that another shot be added to the arsenal to keep her count up. The most shocking news we received was that each of these shots carries a $9000 price tag!

She received this shot yesterday, so today was a bit suspenseful as we waited to see if Sarah's white blood cell count would be high enough for her to receive her second chemo treatment. Luckily the count was up, and Sarah's treatment plan is still on track. This new drug will help her continue, but this comes at a cost. It is known to cause muscle and joint pain, and Sarah is already starting to suffer from it.

Tonight Sarah is feeling the fog settle in once again. I wish I could tell you all what is coming next, but we just don't know. There is no way to predict how her body will react, so all I can really do for those of you reading this is to continue to report. So far she is tired and sore.

The reality of the situation is upon us once again, but our spirits remain high. Earlier tonight I overheard Sarah exclaim to someone on the phone, "this is the ultimate experience in mindfulness. You cannot exist anywhere but the present moment, or it will drive you crazy". I couldn't agree more, and I hope that we can all follow her lead on this. Live in the moment, and make the most of it.

That's all for now.

Thank you for all the love and support,

Dan

An off week

2009-02-18T19:36:00.000-08:00

Hi Everybody,

I'm sure we've all had an off week at one time or another, a little stint where nothing seems to go your way. Well, our definition of the term has been flipped upside down. The"off week" is now the week with no chemo treatment, and it comes every other week.

Our first one has been the closest thing to normal life we've experienced in what feels like an age. It was marked by the coming of Sarah's mom Lori, which is a blessing beyond our wildest expectations. We had been praying for help during this period of our lives, and have received it in abundance.

Marek loves his Grandma "Loli", and having her here will provide him safe harbor in some very choppy waters. A huge weight was lifted from Sarah's shoulders as soon as she arrived. She can now relax and concentrate on her healing.

To celebrate the off week I've decided to substitute my words for pictures, so you can all share it with us.

Thank you for all of the love and support,

Dan

Words of Encouragement

2009-02-16T12:36:00.000-08:00

Hi Everybody,

there has been some confusion surrounding leaving comments on the blog. Blogging is a new experience for me, and I know for many of you out there this is your first experience as well. Let me run through step by step. If you have a gmail account,which is Google's email client, then the process is simple. All you have to do is sign in with your gmail address and password and you're ready to comment.

For the rest of you, the process is pretty painless. First click on the "comments" tab below the post. Type your message for Sarah in the box labeled "Leave Your Comment".

When your done, click the circle next to the Name/URL in the "Choose an Identity" column. Put your name in the "name" box and leave the "URL" box empty.

Finally, click the "Publish Your Comment" button and you are now a published author!

Sarah would love to hear from all of you so please give it a try.

Talk to you all soon,

Dan

The deep breath

2009-02-13T21:37:00.000-08:00

Hi everybody,

it seems like ages since I've posted on here, though I think it's been less than a week. The first two weeks of this experience were inexplicable, though I've done my best to dictate the events to all of you. What came next was unexpected.

From the time we first learned of Sarah's condition, to the day her treatment started, we were living in a bubble. On the inside, time became irrelevant as we rushed from point to point, finding milestones left and right. I last wrote to you from the chemotherapy center, while Sarah was receiving her first of 12 treatments. Four hours later we were on our way home, accompanied by a strange uncertainty.

What's next?

The nurse had forewarned us that Thursday and Friday would most likely be the days when the treatment would catch up with Sarah. Chemo affects everyone differently, so for the first time in what seems like a lifetime, we were left to wait and see. The inertia that had been propelling us forward was now gone. We were no longer preparing, but instead we were there, right in the middle of the storm.

Calm crept upon us, and slowly but surely we gave in to it. The noise filtered out and everything around us slowed. It was almost like slipping under water. Time had stopped, and then Sarah fell asleep.

In the near decade I have been with Sarah, I have never seen her like this, but I suppose this is something we will all find ourselves saying. She could not keep her eyes open. Days past, and she slept. We took this as a sign that the treatment was working, but it was also the first real visible sign of what lay ahead for her, and for all of us.

Wednesday, Thursday, Friday; all passed us by. Three long days suspended under water. She would snap out of it for bits and pieces, but never all the way. On the fourth day her eyes opened, and the fog lifted. As a family, we collectively broke the surface of the water and took a deep, and thankful breath.

This was the first of 12 treatments, and for a first experience it was pretty gentle. We are now on the path, and Sarah is on her way to recovery. I think that many of us face our worst fears in the calm and quiet moments of our lives. What Sarah taught me this week is that I, my family, and all of us need to remember to take that deep breath and be thankful that we're moving forward.

that's all for now, but I'll be back soon.

Thank you for all of the love support,

Dan

It All Becomes Relative

2009-02-10T20:44:00.000-08:00

Hey Everybody,

The title of this post is actually a quote. These sage-like words were delivered, ever so delicately, by Sarah's chemo nurse during her first session this afternoon. The nurse started by exclaiming that Lymphoma is a great cancer to have. As crazy as that may sound, we couldn't agree more.

As far as cancer goes, we have a good one. Lymphoma is highly treatable, and people like Sarah, being young and strong, walk away from it every day. They go on to lead normal lives, to have children, and thrive. It is because of the treatable nature of this disease that we were excited today, more than we were scared. After two timeless weeks of tests and waiting rooms, we are finally taking a step forward, a step towards recovery. This is a day to celebrate, not to fear.

From the outside cancer is taboo, foreign and frightening. It is an overarching term that wraps itself around a variety of conditions, and it seems to creep its way into all of our lives in one form or another. Cancer is the "it" which haunts and stalks us from a far.

From the inside it all becomes relative. We now live in a world of varying degrees and stages, good days and bad. In this situation your tolerance goes up, not because you will it to do so, but more as a natural response to the challenge. We come to terms with change, and then we adapt. It's a natural part of every day life, and it is no different in this situation.

Blessings are strange. They are hard to see, and too often only come to light in our darkest hours. Chances are they surround us at all times, but we are too blinded by the distractions of daily life to notice them. Ours are out in the open now, and they're greatly appreciated.

That's all for now.

Thank you for all of the love and support,

Dan

P.S. Some of you may have noticed that I use the word we a lot when I'm describing Sarah's condition. It may seem strange, but I do feel it is appropriate. Sarah takes the hit on this one, but we all gather around to help raise her up the challenge. She calls the shots, but we must be ready to respond, and to adapt. If you are reading this right now, you are helping. You are joining in and experiencing this with us. You are adapting along with us, and we love you for it.

Cancer Speak

2009-02-09T19:18:00.000-08:00

Hi all,

I'd like to devote a couple of paragraphs to a question I received recently. It was put to me like this: "forgive my ignorance, but what exactly is an Oncologist?" Let me be the first to insist, ignorance is bliss, and when it comes to cancer, it need not be forgiven. I wish I hadn't the foggiest idea of what most of these terms meant, but since we have recently been thrown in the fire, I'll do my best to simplify.

I think the best way to approach this subject is to really describe Sarah's diagnoses. After all of the tests, the poking and prodding, the official label is Hodgkin's Lymphoma, stage 2 B.

Let's start with Lymphoma. This is a cancer originating from a type of white blood cell called lymphocytes. Sarah's specific blend was first described by Thomas Hodgkin in 1832. It's basically a cancer of the blood that spreads from lymph node to lymph node. It's also one of the first cancers to be cured by radiation therapy, and also by combination chemotherapy.

The severity of the cancer is depicted by the stage, which numbers 1 through 4. Sarah's cancer was discovered at stage 2, and thanks to the wonderful care she's receiving, it should never take another step forward. Stage 2 involves two or more lymph node regions on the same side of the diaphragm.

One of my recent posts was about the good news we recieved from the PET scan and the bone marrow biopsy. If the PET scan had showed additional suspect lymph nodes on the other side of the diaphragm, it would have been indicative of stage 3. If the bone marrow biopsy had shown cancer in the bone marrow we would have been facing stage four. Needless to say, we we're stoked about stage 2. Well, as much as one can be.

Now there is the matter of that pesky B, which unfortunately, despite all of our recent good news, insists on raining on our parade. "B" stands for bulky, and refers to the size of the growths in Sarah's chest. Any growth that exceeds 5 centimeters is considered bulky, and Sarah's measures around 8. When the growths get to be this size, it does not matter what stage you are at, you are treated as a stage 4.

All of the good news we received was great for the soul, but has no effect on Sarah's treatment plan. I suppose it helped that we learned of this early on, so we were able to see the silver lining in it all, instead of the stormy weather ahead.

Every day we are learning. We are digesting information and assimilating it in to our lives. We take the good with the bad, and we take it in stride. This in great part due to the support we are receiving from all of you, and it means the world to us.

Thank you all for the love and support,

Dan

P.S. An Oncologist is a cancer specialist. Almost left you guys hanging on that one.

The Last Saturday

2009-02-08T10:34:00.000-08:00

I know "the last Saturday" sounds a bit dramatic, but in a way it really was. I started the day, February 7th, pondering the idea that this was going to be our last Saturday as a family before the treatment begins. We are in for six months of chemotherapy and another three weeks of radiation treatment. This is no small feat. Even though Lymphoma is highly treatable, that treatment comes at a price.

Over the course of the next year Sarah will most likely loose her hair, her energy will drop, and she will feel side effects from this treatment that I cannot imagine. Life will throw new and more difficult challenges at us, and so I suppose I was both romanticizing about this "last Saturday", and also starting to grieve it's loss before it even began.

So, let me tell you how this magical day unfolded. It started with a tantrum from the resident two year old, a Daddy with low blood sugar and a bit of short fuse, and a Mommy whose patience was wearing thin. Next was our stop for lunch Charlie Hong Kong(the best organic chinese food in Santa Cruz). This consisted of a meltdown over Marek's favorite concoction, bubble water and juice, and culminated in him being hoisted over my shoulder and removed from the restaurant. Ahh two year olds.

It then progressed to a glamourous trip Costco, which was a little like entering a feeding frenzy while holding a bucket of chum. We were tossed and turned, all while trying to subdue our little guy, and keep him from escaping from the confines of the giant shopping cart. We exited just after hitting our boiling point, and were hoping that Marek would drift off to sleep on the drive home. No such luck. He was busy honing his skills as a professional button pusher. The rest of the day consisted of a failed attempt at nap time, a mad cleaning session, and a horrible battle over getting the little man dressed to go to dinner at a friends house. All in all it was tough.

If there is a lesson to be learned by the mystical "Last Saturday", it's that we can surely do better. It's funny, and in retrospect a little ridiculous, the way we allow are minds to pick and choose the events that make up a memory. Though the next year will be difficult, thus is life. Thankfully we all have the ability to gloss over the rough patches when we recreate these days in our minds. Most of all I'm thankful for all of the crazy Saturdays we have to look forward to in our lives together.

that's all for now.

thank you all for the love and support,

Dan

Results

2009-02-06T13:28:00.000-08:00

Hi all,

We have a few minutes of down time today so I want to get you all caught up. Today Sarah and I headed off to Palo Alto, the home of Stanford University, to get the final test before Chemo starts on Tuesday. This one is called a PET scan, and is very similar to the CT scan. The main differences are that this one scans the entire body for cancer, and that it requires the injection of a radioactive sugar solution into the bloodstream. Yeah, I know.

It turned out to be pretty mellow compared to some of the other poking and prodding. The funny thing is, no matter what the results of this scan, the treatment will be the same. This brings me to the point of today's post: results. We seem to be at the mercy of the telephone, always waiting for the next shoe to drop. So far there have been enough shoes dropped on us to comfortably outfit a centipede.

First it was the CT scan, which lead to a second CT scan. Results: growth is consistent with Lymphoma, and several more were seen in the chest. Next it was the Fine Needle Aspiration, which lead to surgery. Results: definite lymphoma. There were a slew of other tests with results like sediment levels too high, lymph nodes are too bulky, and the list goes on and on.

This trend has been the overarching theme of the last couple of weeks, until today. After my radioactive wife and I returned from Palo Alto, we settled in to get her some rest and catch up on a little bit of Lost. A couple of minutes in we were interrupted by a phone call which we had been dreading. It was the results of Sarah's bone marrow biopsy, which would determine whether her Hodgkin's is stage 4. Again, this doesn't affect the treatment in any way, but it is a pretty heavy blow to the psyche. In an unexpected and highly welcome turn of events, our track record of bad news was broken. The bone marrow is clean! Sarah lit up as soon as she heard this, and we are still celebrating this small victory. I'm sure we have a lifetime of results waiting in the wings, but at least now we know they can go our way.

That's all for now.

Thank you for all of your love and support,

Dan

2009-02-04T17:51:00.000-08:00

We’ve created this blog in order to communicate with the mass of people who have been showing support for Sarah and for our family. We love to hear from all of you, but the hectic nature of what we’re going through can make it hard to connect. This blog is our way of keeping you all in the loop.

As some of you know, Sarah has been diagnosed with Hodkin's Lymphoma.

Perhaps I should start from the beginning. About a month ago Sarah noticed a lump on her neck, just above her right clavicle. We went through the normal denial, thinking it was probably nothing, but had it checked out just to be safe.

Sarah’s doctor, who is brilliant and level headed, was visibly concerned with the growth. This shook our foundation a bit but we were still hoping for the best. Next we went to see Dr. Gurney, the ENT who has made this experience as gentle as it could possibly be. The preliminary exam was positive. The growth had a smooth surface, and a good range of motion. Both of these attributes generally point away from cancer.

The next step was the CT scan on Thursday January 23rd. After the scan, we were supposed to see the ENT about a week later to discuss the results. The next day Sarah was called in for a second scan. My heart sank when I got the call. The results revealed that there were several more growths in her chest, and that they were consistent with lymphoma.

This unleashed a wave of emotion for both Sarah and I. This was due in part to the recognition of what was in store for Sarah and for our family, and it also eerily connected many of the dots from the past six months. Sarah had been battling what we had come to believe was depression. She was feeling tired all of time, unable to enjoy life’s pleasures, and unable to shake the feeling. Little did we know that the cancer was welling inside her the entire time. It was horrible news, but it was also a definitive answer to a question that had been plaguing Sarah.

Well, almost definitive. The next step was a biopsy by fine needle aspiration on Wednesday January 28th. This was painful to watch, so I can’t imagine how it felt for Sarah. After three passes with a frighteningly long needle, the results were off to the pathologist. We were told to expect results in 10 to 12 days.

The call came the next day. Dr. Gurney wanted Sarah in for surgery on Monday Morning, February 2nd. That’s all the information we were given, and once again our hearts sank.

We had a pre-op appointment scheduled for Friday afternoon, but that seemed like an eternity to wait with no idea of what the results were, and why they were jettisoning us into surgery. Our fear was that it was something more serious than lymphoma, and the not knowing was excruciating. Sarah called back and insisted that the Doctor call her as soon as possible. Dr. Gurney returned her call promptly. It turned out that the pathologist was confident from the biopsy that it was lymphoma, but needed lymph tissue to be able to narrow down the diagnoses.

So, bright and early Monday morning we headed to the Sutter Surgery Center to have the lymph node removed. The surgery went extremely well, but left Sarah feeling pretty depleted. They removed three nodes: the large one on her neck and two smaller ones in the same area. These were sent off to the pathologist, and results were to come in 4 days to a week.

Tuesday January 3rd it was on to the Oncologist’s office. We met with Dr. Wu, who discussed our treatment options with us. We were in the middle of discussing the various possibilities, which all depended on the results of the extraction biopsy, when the results arrived.

Hodgkin’s it is.

At that moment, everything became extremely real. No more conjecture, the word was in, and it hit us like a ton of bricks: Chemo, radiation, and a long and bumpy road. This was by far the hardest moment in this two week long roller coaster ride, but it made me realize that we’ve just been climbing to the top of the hill. The real ride is about to begin, and we are so thankful that we have all of you to help move us along the way.

The most difficult part of this experience will be how it affects our son Marek. He has been a gift in every possible way, and we couldn’t be happier that he arrived when he did. Marek will be forced to make some of the biggest sacrifices in this difficult situation, mainly in that he will no longer be able to breastfeed. Sarah has done an unbelievable job in defying all odds, and providing milk for Marek for two and a half years. If she puts a fraction of the effort and compassion that she’s put into breastfeeding into her fight against cancer, the cancer does not stand a chance.

There will be ups and downs, but it’s with the love and compassion of our family and friends that we will find strength, and ultimately success. We will do our best to keep you all in the loop and up to date.

This blog will allow us to do just that, and also will prevent Sarah from having to tell the story over and over, in a time when rest will be so valuable to her health. Please feel free to comment, as I’m sure that Sarah will want to hear from all of you.

~ Dan, Sarah & Marek