Saturday, December 29, 2012

A New Birthday

December 28, 2012. 

You could say that this day is my new Birthday.

How could someone who was born a baby boomer on June 1st get a new birthday?  I will explain and perhaps you can not only celebrate my new birthday with me, but gain an appreciation for the many others who share this lucky situation with me.

For any of you who have honored me with following my posts from the past here, this will be a bit of a departure.  Please indulge me as I update those of you who have been following my personal adventure with Lymphoma.  My hope in publishing here is to not only provide those of you who are my friends with an update, but to provide encouragement and hope to those of you who may be facing a similar challenge.


So some questions to begin with:  How did I get here?

Back in 2007, I was diagnosed with indolent, non-Hodgkin's lymphoma.  I went through treatment and was declared to be "in remission" in March of 2008.  All seemed well and with each passing month of "good health", the anxiety I felt when I first heard those words, "Well tough luck kid, you have cancer", seemed to fade into a memory.

In 2010, on a routine scan, I was told that the Lymphoma had come back.  I began to work with a team at the Sidney Kimmel Cancer Treatment Center of Johns Hopkins to supplement the work of my local oncology team.  Being the type of Lymphoma it was, the physicians here at Johns Hopkins counseled me to adopt a watch and wait attitude toward the disease as it was relatively slow growing and had not compromised any vital organs.  However, we all knew that at some point, it would begin to impact my health and some form of treatment would be required.

Thus began a time of waiting for the bomb to go off.  As Alfred Hitchcock would famously say..."If you place a bomb under a table with two people eating and it goes off, that is drama.  If you place a bomb under a table and you don't let anyone know, then have it go off, it is a surprise.  If you place a bomb under the table, let the audience know and then don't have it go off, that my friend, is suspense."

So for me, this was a time of great suspense.  Many questions; When would the Lymphoma "bomb" go off?  How big would be the damage?  What has this got to do with a new birthday?  (I'll get to that in a bit)

This past summer (2012), I began to have some odd things begin to happen.  I felt pressure in my throat area.  Strange lumps in my underarms.  I started seeing my local family doctor and he thought perhaps I was having a respiratory infection so treatment was prescribed and I responded OK.  Then in August/September the bottom fell out.  I began to feel like areas below my stomach were becoming very hard and my breathing became more difficult (I just couldn't take a deep breath).

I can't watch Paul Ryan???

On the night of Paul Ryan's speech to the Republican Convention, I turned to my wife Cheryl and said, "It's time, take me to the emergency room".  Those of you who know me that to give up hearing Congressman Ryan speak, meant that I knew something was very wrong.

The trip to the emergency room was an adventure.  However, after several hours, I was wheeled into the CT Scan room and it fired up to take a look at what was going on inside.  The preliminary results showed that several of my lymph nodes as well as my spleen had become enlarged.  Time to visit the Oncologist.  So the next day I saw Dr. Aksentijevitch of the Virginia Cancer Specialists Group.

Dr. Aksentijevitch had seen the results of my scans and blood work and declared, "It is time to put you back into treatment."  Thus began a whirlwind 7 days.  Tests, more tests, a placement of a Port in my chest and a visit back to Hopkins for additional support.  Thursday, September 6th was a day of much activity and surprises.  In the morning I received a port in my chest so that medication could be delivered more efficiently.  Then it was off to see Richard Jones, MD at Hopkins.  His impression... "Your Lymphoma has become a little angry".  My thought, "What did I do to "piss" if off?"

That day ended with surprises.  As we were traveling back from Baltimore, I received a phone call.  It was from Alexandria, Inova Hospital.  I was told that my room was ready.  I turned to Cheryl and said, "What???".  Apparently, Dr. Jones was sufficiently concerned that he had ordered to have a room set up for me so that treatment could begin right away.  So it was go straight to the hospital, do not go home, do not pass go, go straight to the hospital.

New Treatment Begins

Thus began a series of chemotherapy sessions, starting in September and continuing through the week just before Thanksgiving.

It was agreed that all of this was to prepare me for a bone-marrow transplant as the best option to deal with this disease.  What followed was a search for a donor.  Thus a series of blood samples were taken from each of my siblings as well as my son, Michael.  The process took several weeks.  I was on pins and needles.  I was pleased to hear that each of my siblings were an "acceptable match", with my youngest sister being considered a "best match".  For many days we were operating under the impression that she would then be the likely donor.

Surprisingly we discovered, that for the type of transplant I was going to receive, my son would be the most suitable donor.  So plans were made to undergo the transplant.

Going through Chemo was tough, at times, but we made it through each session without too much wear and tear.  December came and the rush to prepare myself for the transplant began.  Tests, tests and more tests; each one designed to measure the condition of my heart, lungs and other vital organs.

The big drive began one week ago today.  On Thursday, December 20th, Cheryl, her Mom (Peggy) and I packed up, said good-bye to our home in Northern Virginia and trekked up to Baltimore.  We moved into the Hackerman Patz residential facility right next to Johns Hopkins.  The next day, I had a Hickman catheter placed and then began one more round of Chemo.  This went fairly well as the anti-nausea drugs have been fairly effective.

Like Stepping into an Episode of the Outer Limits

One of the scariest steps in this process was receiving radiation yesterday.  I felt like I had stepped into an episode of the "Outer Limits", as the radiation machine generated a bit of a weirdly wild "light show".  My entire body was showered in beams of a fairly low dose of radiation.  I half expected to step off the table and be confronted by some inter-dimensional being.  I wondered if sometime in the middle of the night, I would grow a third eye.  But in fact, it was all a bit boring and I did not even have much of the problems I was told to expect like nausea and some lower GI distress.

So here we were, all set for today, the BIG DAY.  Michael arrived late Thursday afternoon.  We chatted and Michael went off to his room to prepare himself for his part as the donor in this operation.  Cheryl and I were resting getting ready for bed thinking all was well and the pieces were all in place for the transplant.  Of course nothing we Snowdens do ever can come off without some last minute panic and this was no exception.  Shortly after Michael went to his room, we got a semi-panicked phone call.  We discovered that Michael had found a tick on his skin.

All sorts of questions came up.  Would the tick create problems for the transplant?  Would we have to delay?  What can be done to prevent Michael from getting Lyme disease?  Would I suddenly grow insect arms after my transplant?  We walked over to the unit at the hospital and after tracking down the on call doctor, we were informed that the transplant would proceed as scheduled.  That Michael and I might receive some antibiotics, but we were full steam ahead on the transplant.

That leads us to day "0".  Michael, my son, arrived at 5AM to begin preparation for his surgery.  My understanding is that his pelvic bone would soon be made to look like Swiss cheese as they went in with harvesting needles all over the pelvic bone region and burrowed in to "harvest" the stem cells.  When they were done, poor Michael looked like he'd gone 12 rounds on WWF.  Still he emerged with a smile, proceeded to call several people by wrong names and has been resting comfortably since.

My New Birthday 

My end was a little less dramatic.  Since my blood type is O negative and Michael's is A negative, they prepared me with lots of fluids starting around 9AM.  In addition, I received several drugs to minimize any reaction to receiving the different blood type stem cells.  Some of these made me quite sleepy.

Then the big event: a big pinkish bag was delivered full of the magic nectar from my son.  It was delivered over the course of a few hours.  This was followed by more fluids.  Finally, we finished up around 6PM and the entire family headed back to our residences at the Hackerman Patz. 

Michael and his girlfriend came over.  He looked like he could definitely use some pain relievers, while all I wanted to do was crawl into a fetal position to stay warm and have a sense of protection.  All in all we cried a little and laughed a lot.  It is well to be surrounded by a wonderful family.

So now begins the process of my adoption of my son's marrow to generate a new immune system that will attack the remaining lymphoma.  If all goes according to plan, eventually my old blood will be replaced by my adopted blood from Michael.  So I literally have new blood in me.  This is why so many transplant patients call this day their NEW Birthday.

Makes sense to me.  At any rate I don't think you can have too many birthdays.  So I will celebrate December 28, 2012 as my new birthday.

Gratitude for those who have meant so much to me 

There are so many people I am grateful to for getting me to this point.  I am sure I will leave out someone important, but first let me begin my expression of gratitude for the many doctors, nurses and staff of the different facilities I have been working with along the way.  These include Inova Hospital, both the Fairfax and Alexandria campuses.  Johns Hopkins has been marvelous.  My team back at Virginia Cancer Group.  Everyone has played a vital role in getting me to this point.

I especially acknowledge Ivan Aksentijevitch, MD and Richard Jones, MD as being a perfect team to help me on this journey.  The last professional I want to give special recognition to is Audra Shedeck, NP.  As Dr. Jones right hand, she is someone who I have come to discover not only understands the process from a technical perspective but also deeply conveys an understanding of the emotional journey that goes with this process.

It may seem corny, but I appreciate my company AT&T.  Not only do they have wonderful policies that have given me freedom to focus on my well being, my leadership team and co-workers been most supportive in accommodating my situation.  I look forward to my return.  I would single out my managers for this year, Tim Harrod-Davis and Leigh Yanes.  Both have been there for me well beyond a simple work relationship.

I have discovered that I have many friends along the way.  From old friends, like Chris and Lorraine Stiehl, that cover my lifetime to newer ones that I have met just recently.  Your words of encouragement and prayers seem to come at just the right time when I needed a pick me up.  Of special note are friends at Teammates at McLean Bible Church who offer prayers and encouragement.  Martin and Sharon Edwards you have been especially kind.  Finally, a note to my lifelong pal Tim O'Connell who through this all has helped me with his sense of humor in a way no one else does.

Of course, family is my bedrock.  Each of my children, Mark, Kelly and Michael along with their support, Larissa, Jeff and Samantha have been tender, funny, encouraging and have helped me to feel like the greatest Dad in the world.  I know that any of you would have offered to provide the marrow, but Michael we now have a unique connection that we share that few others in the world have.  Your Mom and I gave life to you and you have now given it back.  My gratitude goes beyond words.

Sharon and Suzanne you are sisters that I love and appreciate for your encouragement and wishes of well being.  Sharon, I appreciate your presence here with me during this entire journey in ways that can't be described in words alone.  David, my brother, your grounding in God's providence has been a frequent reminder that we have much to be blessed by.

That leaves me with Peggy and Cheryl.  Peggy, I know I am not your natural son.  Cheryl is your daughter and I only get to be associated to you through her.  You have always made me feel like I was one of your own.  Still, in spite of the fact that you lost someone so dear to you when we said good-bye to Leon last year, your being here has meant the world to me.

Finally, what can I say sweetheart, Cheryl you are the love of my life.  I am clear that I would not be the man I am today without your guidance, partnership and love.  All that you have done has been nothing short of amazing.  Your kindness to all is second to none.  I love you and like the song from the Who, you are a "Bargain, the best I ever had".

God willing, Cheryl, you and I will have many happy years ahead where we will enjoy more grandchildren "on our knee", though they may not be (with an English accent) "Vera, Chuck and Dave", I am sure, like Luke is already, they will be a blessing.

Of course, this can not be ended without thanking God.  On Christmas Eve, there was a small Christmas dinner celebration here at the Hackerman-Patz facility.  Small packages of gifts were handed out and a couple from Oklahoma who we had never met but apparently had been here for treatment sometime previously had a card with a simple message: Peace to you this joyful season.  Hand written inside was the following passage from Joshua 1:9:

"... Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go."
He is indeed! My greatest thanks of all is for His continued blessings on this family and all who share a similar journey. 

To all, especially my family and wife, I can not think of a better way to end this story (so far) than with a traditional Irish Toast, so to honor my maternal grandmother Maude Bailey and all who are Irish or just wished they were Irish, may I offer the following:

May the road rise up to meet you.
May the wind always be at your back.
May the sun shine warm upon your face,
and rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of His hand.

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1 comment:

Gordon Stueber said...

I liked you article very much!