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