A note from Sarah

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

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

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

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

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

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

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

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

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

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