Coincidence…or Godwink

co-in-ci-dence noun

A striking occurrence of two or more events at one time apparently by mere chance

synonyms: accident, chance, serendipity, fortuity, happenstance, fate

A few weeks ago Wade and I were in Houston for my 6 month checkup at MD Anderson Cancer Center.  I am a stem cell transplant survivor about to celebrate my 4 year transplant birthday.  It was my 22nd bone marrow aspiration and biopsy…yes, that’s right…22!  All went well with my appointments. My awesome doctor, Dr. Chitra Hosing, gave me a big hug and told me she wished all of her patients were doing as well as I am!  I am still in remission!  After finishing up at the hospital, we headed over to the Galleria to have dinner at The Oceanaire and then a nightcap at Del Frisco’s Double Eagle Steakhouse next door.  After a wonderful meal at The Oceanaire, we sidled up to the bar at Del Frisco’s.  The gentleman sitting next to me was alone, so Wade and I struck up a conversation with him.  He was in town on business, and when he mentioned he was from Philadelphia, I told him that my stem cell donor, Robert, is from Pennsylvania and was a student at UPenn at the time he entered the Bone Marrow Registry and ultimately donated his stem cells to me. Coincidentally, (or not), Gene is a good friend of Andy Talley, the head football coach at Villanova.   From his website, talleybonemarrow.org:  “The main goal of our foundation  is to add donors to the Be The Match Registry®.  Coach Talley has had a relationship with Be The Match® for many years. Together, through the initiative “Get in the Game”, they have organized many opportunities to join the Be The Match Registry across college campuses nationwide. As an extension of its mission, the ATBMF is committed to supporting Be The Match in its endeavors.”  My donor, Robert, has told me that his coach at UPenn, Al Bagnoli, encouraged his team to join the registry.  Coach Bagnoli was influenced to do so by his good friend, Coach Talley.  A year after Robert joined the registry, he was chosen as a perfect match to be my donor.  At 19 years old, Robert saved my life! Getting to visit with Gene was very special to me.  What a great man! 

Was this a mere chance sitting next to Gene from Philly, Coach Talley’s good friend? in Houston?

  A couple of weeks later, Wade took me to Santa Fe, NM to celebrate my 60th birthday, although I feel my stem cell transplant birthday is the one to truly celebrate.  We went to Pasqual’s for breakfast and sat at the big community table.  Two young ladies from Washington DC sat down next to us, Sanam and Amber.  Sanam told me she is working on traveling to each of the 50 states.  This vacation was New Mexico!  They were so much fun to visit with.  They told us of many interesting places they had visited in the Santa Fe area.  I’ve been going to Santa Fe for a long, long time and I learned about places and things I had never heard of!  This was their last day. They were catching a flight in the afternoon back to DC.  When I mentioned to Sanam that I am a stem cell transplant survivor, I learned something truly remarkable about her…she was nominated to compete for Woman of the Year for The Leukemia and Lymphoma Society in 2011!  She was one of twenty Washingtonians nominated to compete for the honor.  She raised a lot of money for this organization!  I felt a special connection to Sanam.  She is a beautiful and amazing woman, inside and out.  She was actually working on this campaign while I was in the hospital getting my transplant!  This truly touched me!

Was sitting next to Sanam and Amber in Santa Fe a mere chance or coincidence?

  Wade, Holly, Sanam, and Amber

Just saying and truly believing, getting to connect with these two, Gene and Sanam, far away from all of our homes was not a coincidence!  It was a Godwink!  And for that I am truly thankful!

Three Years Out….just thinkin

Today is my 3rd birthday!  Three years ago I received a stem cell transplant at MD Anderson Cancer Center.  For the past week, I’ve just been doing a lot of thinking.

Thinking about Robert, my donor.  It was because of Robert’s totally unselfish, brave, and life saving act of donating his stem cells to a complete stranger, that I am writing this post today.  He was 19 years old at the time.  Even if he wasn’t my donor, I would still be completely impressed with Robert!  We had a great time together last summer in Chicago, along with my husband, Wade, Robert’s girlfriend, Theresa, and friends, Josh and Nicole.  Since Robert and I both like baseball, we attended a major league game in Chicago, the White Sox vs the Yankees (on that very day it was decided A-Rod could play…we sat 13 rows above 3rd base, and it was awesome!).  One perfect moment of this trip was getting a cab with Robert that had a Be The Match ad on top of the car with a photo of Robin Roberts!  It was mind blowing, and I really don’t feel like it was a random thing! 

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Thinking about how my life has changed.  I have a new ability to see people and things differently.  Call it intuitiveness, perceptiveness, achtung.  My priorities have changed.  I see things differently.  I have felt more connected to people, more caring toward people.  Just one example…last year while staying at the Greenbriar in West Virginia,I felt compelled to make friends with the doorman who has been employed there for more than 50 years.  We became great friends, and have in fact, corresponded.  His name is Frankie, and he is a loveable, perfect gentle man. He was very cautious not to breech any confidentialities, but did tell me Bob Hope was one of his favorite guests!   He was going to church that night and put me on their prayer list.  Here is a photo of Frankie and me.  (And go to the Greenbriar if you can!  It is an unbelievable place!)

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Thinking about MD Anderson Cancer Center, what a great institution it is, and how many lives they have saved.   Thinking about how caring and professional the staff is.  And my Awesome Doctors!  They truly are the best, the cream of the crop, unparalelled.  Dr.Garcia-Manero, my MDS doctor, and Dr. Hosing, my stem cell transplant doctor.  I can’t thank them enough!

 

Thinking about my husband Wade, my care giver.  He truly gave me the best care in the most loving, understanding way.  He provided me the opportunity to receive the best care in the world at MD Anderson.  And his caring and love never ends!  Thank you Wade!

 

Thinking about my family and the sacrifices they have made for me, and the unconditional love they have for me.  Thinking about my adorable grandchildren whom I love deeply am able to act normal and crazy with now that I am well.  This thought brings me back to Robert…

 

Thinking about Robert, who made this all possible for me.  Thinking about how thankful I am for him.  Thinking about how alike (but different) we are.  Thinking about how much I love him.  Thinking about how excited I am to see him and Theresa in just 3 1/2 weeks!  Thinking about how it was a “meant to be” thing that he joined the Be The Match registry.

 

It’s been a wonderful, eye-opening, blessed, amazing journey!  Thank you Robert!

 

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Wade, Holly, Robert, Theresa

01-25-2014 Flip Flop

A really good sign of wellness is the return of the ole mojo, energy, busy-ness, and not taking the time to blog! I can finally say that I feel like my self again, that person I was before I got sick. It’s been a long journey, a journey worth every step whether forward or backward, a journey that has blessed me with new friends, random acts of kindness, and the belief that chance meetings with strangers weren’t so random after all. It has been a life changing experience, for the better. Deep down in my heart I know I would still feel this way even if my outcome had not been successful. The love, caring, and kindness of others in the face of adversity is, for the lack of a better term, life changing!

Dr. Hosing, my stem cell transplant doctor at MD Anderson Cancer Center whom I dearly love, took me off of my immune suppressant drug, sirolimus, last July. I had a few bouts of minor Graft vs Host issues which were treated. Each time it returned, it was easier to get rid of, until finally, it didn’t return! I credit this to my awesome donor, Robert, and his strong immune system which I now call my own! Robert is one of those blessings of my life changing journey. It is impossible to find the words to express my love and gratitude for Robert, my life saver. A future blog will be about our awesome trip to Chicago with Robert and Theresa last summer when we went to the Chicago White Sox and Yankees game, that highly publicized first game A-Rod played. We had a great time!

OK, now for the flip flop part. Wade and I will be returning to MD Anderson on Monday. This time we are going for Wade, my beloved husband who was the most amazing care giver. Last fall we went to MD Anderson, his first appointment and my checkup appointment. How strange for us both to have medical record numbers and to split up to make all of our appointments! He has a very rare disease called Castleman’s disease. These are lymph node tumors. He has had two tumors removed, the first one was under his arm and removed about 25 years ago. The second one, 7 years ago in his neck, and he now has a large, very vascular tumor in his chest near his heart and lungs, making surgical excision too risky. When this tumor was found last summer during his yearly physical at the Cooper Clinic in Dallas, we knew it was time to head to MD Anderson. My Dr. Garcia-Manero, who treated me at MD until my stem cell transplant, and whom I have the utmost respect and love for, recommended Dr. Luis Fayad who specializes in lymphoma and myeloma. After a pet scan, another tumor was found in his abdomen. Next week he will have another pet scan to see how much the tumors have grown, and a needle biopsy of the tumor in his abdomen. Then we will find out what his recommended treatment will be. There are two types of Castleman’s, one is a single tumor that affects one lymph node and doesn’t recur, and is not hereditary. Wade’s brother has had a single Castleman’s tumor removed years ago, and one of Wade’s daughters has had a Castleman’s tumor removed when she was 18 years old. So much for the non hereditary part! So, this is a nontypical difficult case. Most of the doctors whom Wade has seen haven’t heard of Castlemans since med school! The other type of Castleman’s occurs in clusters and sometimes turns into lymphoma. Thankfully, Wade’s tumors have been single lymph node tumors. We are both very pleased and have the utmost confidence in Dr. Fayad. On our first appointment with him, he played a little joke on us and made us laugh! We are so fortunate to be at MD Anderson, the number one cancer center in the nation with the very best doctors.

I will be starting on a new journey myself, that of caregiver. I hope and pray that I can care for Wade just as he cared for me…selflessly, lovingly, and completely. I will be able to understand the other side of the journey.

New Beginnings – Happy Birthday!

On was the day before Easter Sunday, Wade and I were outside doing some major yard work/cleanup.  Thanks to the drought we are in, there was lots of dirt from dust storms and suffering plants and grass.  Not a pretty sight…  The following morning there was one lonely, lovely purple flower on the vinca growing along the driveway.  I had to snap a picture…it was a sign of new growth, hope, rebirth, new beginnings…all of the things we are mindful about on Easter Sunday.  It was a sign!  I was in awe!

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Two days later, the birth of a new grandchild Ella, Haley and Jon’s first child.  A new beginning!  And since then, new beginnings everywhere in my great big wonderful family and family of friends!  Relationships mended, old friendships renewed, new friendships nurtured, moving on with new jobs and endless possibilities, new opportunities, and graduations from high schools and college.

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On my last appointment at MD Anderson a couple of weeks ago, everything was really good…only a few minor problems.  Dr. Hosing is letting me very slowly try weaning off of the immune suppressant drug I am on, sirolimus.  When I tried this last fall, it didn’t work very well. Graft Vs Host set in very quickly.  There were liver issues, and I was back on the drug.  However, last Monday when I had my blood checked, it was the most normal blood test results that I have had in years!

Today is my SECOND birthday!  Exactly 2 years ago I received stem cells from my donor, Robert.  What a trip it has been!  During those two years I suffered temporary blindness and migraine headaches from drug reactions to tacrolimus and cyclosporin, all of the usual terrible side effects from busulphan and ATG, weight loss of 40 pounds, graft vs host on my skin, in my upper GI and lower GI tracts, liver, and gums, muscle weakness and foot-drop from steroid use for GVHD, deep vein thrombosis in my left leg, and a very rare virus that we stem cell transplant patients are extremely unlucky to get – The dreaded BK Virus!  Then there are all of the emotional issues I dealt with.  Some of the most difficult were friends that moved on without me, chemo brain, and dealing with depression and forgetfulness.

I am not griping!  With my wonderful husband, Wade, constantly by my side, all of my energies, which were mostly spiritual rather than physical (fellow survivors will relate to lack of energy!), were devoted to getting through…getting by…getting well.  Each baby step offered new hope.  Baby steps turned into more normal steps, and sometimes even happy feet!

So, on this special day that I am now 2 years old, I want the world to know that all of those trying times are worth it.  Be steadfast, hopeful, positive and kind, appreciating each day, turning baby steps into happy feet.  We can only have positive outcomes when we have positive attitudes.  I pray daily for positivity in my life.  And I pray for those less fortunate than me.

Speaking of all of these new beginnings, Robert, my donor, is my life saver!  With out his complete and selfless act of love and compassion by giving me, a total stranger, his stem cells and a new chance at life, I would not be writing this post.  He just graduated from college and will soon be entering law school.  Another new beginning!  I know he will be very successful with anything he does.  Robert, you are awesome and amazing!  Today I am celebrating 2 glorious years of new life and new beginnings.  But I am also celebrating Robert!  I love you Robert!  And I love my great big beautiful family!

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06-17-12 MY DONOR ROBERT!

I HEARD FROM MY DONOR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

All through out the year since my transplant I have tried not to get my hopes up just in case my donor wanted to remain anonymous.  And then a couple of weeks ago, I received the most thoughtful, sweet email from Robert!  I wanted to make sure it was ok with him if I blogged to the whole world about him and also asked for pictures to share.  Robert Gawlas is a senior at the University of Pennsylvania where he plays football.  After he wrote me the email, I googled him so fast it would make your head spin!  And there were a lot of great things I found out about him, which only confirmed what I had thought about him all along!   A nineteen year old young man who would do this for me  has got to be a very special person!  According to his bio on pennathletics.com, he is a 6’4″ 250 lb. tight end.  He was outstanding in track in high school, in fact he told me he is going to walk on to the track team in the spring.  He is applying for law school, I know he will make it!  Above all, it is so obvious that he has a big heart, is very unselfish and giving!   I have been very emotional since hearing from Robert…everything I say seems trivial compared to what I feel.  There are just no words to describe the feelings I have for Robert and for him saving my life!  His mom took pictures of him in the hospital last year hooked up to the apheresis machine donating the stem cells at a hospital in Pennsylvania that I received the following day at MD Anderson in Houston, so I am going to post them for you:

Wade and I hope to meet Robert as soon as we can all get together.  I can’t wait to see him and hug his neck!  I will blog more about Robert later.  But for now…………

EVERYBODY GIVE ROBERT THE LOVE!

04-12-12 Feeling The Love In St. Louis

On a recent quick trip to St. Louis, I had the opportunity to shop at a boutique next to our hotel – Blue Moon Activewear.  (It is actually in Clayton, Missouri.  St. Louis is made up of a lot of little towns).  Cheri has the coolest store…all kinds of workout clothing, and also comfortable active wear that is very fashionable.  For instance, I got a pair of really cute jeans that are actually yoga pants.  How cool is that?  While I was trying on, I admired the artwork on the walls of the dressing rooms and decided to snap a pic.  There were song lyrics from Boz Scaggs in one room and Crosby and Nash in the other.  I instantly knew Cheri is a music lover!  She caught me taking the pictures so we started to visit, which led to my blog, which led to my transplant journey.  Cheri is in the Bone Marrow Registry and is very much wanting to be a donor!  She said something that really touched me, (and yes, made me happy cry!).  Speaking of my donor she said, “He’s going to Heaven”.  I love that!  It all just brings to mind how many amazing people I have met throughout my journey in so many different places.  And how much encouragement and HOPE are generously given to me by Cheri and so many others!  If you are in St. Louis, you will love shopping at Blue Moon Activewear.  And be sure to go next door to Extra Virgin, An Olive Explosion where you will find amazing olive oils and balsamic vinegars from around the world and a tasting bar to try them all.  Also an olive bar, pastas, condiments, cookbooks, serve ware, and all kinds of cool stuff!  I bought an olive oil that is produced very near where my friend Rosanna lives in Catania, Italy. She has a great blog –  rap55.wordpress.com.  Check it out!

To become a stem cell donor, go to www.marrow.org for information.  You might be able to save someone’s life, just like my donor saved mine!

Love your soul and it will love your body…which will love your yoga jeans.”  This is printed on the tag of my yoga jeans.