From 62 to 6…Robert, this one is for you!

This has been an exciting year for me, and at the top of the list is being 6 years out from my stem cell transplant!  Six years ago today I was very sick.  All of the toxic chemo had kicked in and totally killed my bone marrow.  I had found out that my donor’s stem cells were on a flight to MD Anderson in Houston and , after being worked on in the lab all night, would be ready for me the next day.  This is an indescribable feeling only a survivor sister or brother would understand.  To be so sick, but to be incredibly hopeful and thankful!  To be a survivor five or ten years out seemed an eternity and unthinkable.  It was a time of living minute to minute.

Fast forward to April 17, 2017.  My phone rings at 6:00 A.M.and in my grogginess and realizing it was still dark, thought it must be some kind of emergency.  Nope, it was my son, Hayes, singing Happy Birthday to me!  That was oh so special and started my day out in the best way!  Throughout the day that I turned 62 years old,  I received wonderful cards and calls, signed up for social security ( hahaha!), and started thinking.  

Thought about how I no longer “think” like a sick person.  Ok, I still obsess on hand washing!  Thought about how I feel better than I have felt long before my diagnosis of myelodysplastic syndrome eleven years ago.  Thought about how I have my mojo back.  Thought about how I can run 3 miles in 30 minutes every day.  Thought about how incredibly blessed I am with good health, family, and my awesome husband, Wade, who loves me completely and wonderfully!  Thought about how it was all worth it!

Fast forward to last week when I had my 6 month appointment with Dr. Hosing at MD Anderson.  I love my appointments with her!  Her nurse, Kelly, is the best!   This time, when Dr. Hosing walked in, she said my blood work was so normal that we had no medical issues to talk about, so can we just visit?  Where have you travelled?  We chatted for a while, I hugged her neck, and thought about how much I love her.  And I thought about the perfect, expert, loving care she has given me since I became her patient after Dr. Garcia Mañero released me to her.  Going back to MD Anderson is not dreaded.  No, it’s more like going back to the people and place where I was given another chance!  Going back home.  It’s looking forward to seeing people I love.  Dr. Garcia Manero, I’m going to see you next time I am there and give you a big hug!  You knew the absolute perfect time for my transplant!

None of this would be possible without one person, my donor and my friend, Robert!  He is my lifesaver.  At 19 years old, he stepped up and donated those awesome stem cells to an unknown stranger.  What an incredible guy he is!  Last summer, my husband and I were honored to attend his wedding to his beautiful bride, Theresa, in Pennsylvania. We stayed with his parents, and were able to meet his extended family and friends.  It was an amazing experience!  You fellow survivors can relate to the indescribable love, closeness, and thankfulness you feel for your donor.   Thank you, Robert, for being my lifesaver.  For your selfless act of giving me your stem cells.  (Best stem cells EVER!)  For your friendship!

Robert got into the Be The match registry through Coach Andy Talley’s “Get in the Game” program.  Thanks, Coach Talley, for all you do to get college athletes into the registry!

For all of you facing a transplant or recovering from one, never give up hope.  Follow your Doctor’s advice and instructions perfectly, take your meds, rely on family and friends for support, keep putting one foot in front of the other even when you don’t feel like it, eat healthy food, exercise, think positive thoughts, develop your spirituality, and be thankful!

This one is for you Robert!  I am so thankful for you and  I love you!  Happy 6!!!!!

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! 

Image

 

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!)

Image

 

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!

 

Image

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!

Image

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.

Image

 

IMG_0021

 

IMG_0028

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!

Image

01-31-2013 My “New Normal” – Survivorship

After dealing with illness, traveling, the holidays, and not feeling very creative, I have decided to get back to the blog.  To those of you who have worried about my absence, I totally appreciate your concern!  I am doing pretty darn good, all things considered…which has made me give a lot of thought to my new normal.

My friend, Julie, a cord blood transplant survivor, wrote me a sweet note a few weeks ago and mentioned that she was trying to find her “new normal”.  It was nice to have a name for this phase of my survivorship.  As a stem cell transplant survivor, I had been thinking a lot about it myself and struggling.  “Whenever I am off of my immune suppressant drug, sirolimus, I can do such and such” and then, “what if that never happens”.   I had to throw off my rose colored glasses and realize that “normal” will never be the same as it was before I got sick. This doesn’t mean it is particularly bad, it just means my life is different.  It is impossible to go through the journey without being changed.   

The first of December I got sick with a sore throat.  It was the first time I had been sick since my transplant at MD Anderson a year and a half ago.  I totally understand now why we must go through all the things we do to prevent getting sick.  Without much of an immune system (I am still on sirolimus), I became very ill very quickly, was hospitalized, and it took a month to get well.  Which made me realize the importance of compliance.  As time goes on, carelessness can creep in.  I truly realized the importance of all the things my survivorship nurse at MD Anderson had taught me.  I’m really good at hand washing and sanitizing, and staying away from people who are sick, but I had come to the realization that I must live my life like a healthy person out in the real world  instead of staying couped up at home afraid of getting sick.  I guess what started me thinking about all of this was that a  few months ago  I tried to get off of sirolimus, with the permission of Dr. Hosing.  It didn’t work.  It took only a week to have symptoms of Graft vs Host Disease, and much, much longer than that to get back to where I was.  Actually I don’t feel like I am as good as I was before trying to get off of sirolimus.  I am really looking forward to my appointments at MD Anderson next month.  This brings me back to my new normal.

I can honestly say that the things I occasionally gripe about…taking a lot of medicine, chemo fried hair, tiredness, frequent blood tests, feeling isolated, and lots of other “stuff”, are really not all that bad.  In fact I am really proud of where I have been and where I am now in this journey.  It is just a matter of acceptance and compliance.  And remembering all of the many wonderful blessings and friendships that have been given me!  The positive things far outweigh the negative.

So, here it is in a nutshell!  Find your new normal, keep compliant with your meds and care, live life to its fullest, and accept the beauty and wonderfulness of being given a second chance!

 

Image

11-09-12 Cancerwise Blog Post

Check out my 2 part blog post on MD Anderson Cancerwise – it chronicles my stem cell transplant at MD Anderson last year.

http://bit.ly/RKDuX0

http://bit.ly/TyYJLt
Hope you all have a wonderful weekend!

Be kind and love one another!

Holly