Hills and All

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

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.

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.....

...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....

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

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