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!!!!!

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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

08-29-12 My MD Anderson visit

I think this was a first…all news was good news!  My appointment with Dr. Hosing went very well.  I get to take my sirolimus every other day instead of every day.  We are watching closely for any problems, but so far no signs of graft vs host.  I totally understand that GVHD can pop up at any time, even years from now.  I have been on this reduced schedule for 3 weeks and I am thrilled!  In fact I feel better than I have in a very long time.  Robert’s (my donor) immune system is going to be awesome I can already tell!  Dr. Hosing doesn’t need to see me for 6 months.  This is a first.  I have been going every month, and then last time, 3 months.  This is progress!  I am going to miss Dr. Hosing, Erin, and Kelly!  I got 5 immunizations, 2 in one arm and 3 in the other.  Wow, after those injections and then a bone marrow biopsy, I was pretty sore!  But we were off to Philly to meet Robert so it didn’t matter!

While at the hospital, I went up to the 8th floor in the Leukemia department to see Dr. Garcia-Manero.  He had read my MD Anderson Cancerwise post about him and had called me, so I asked him if I could come find him.  It was really good to see him and hug his neck.  What a special man and awesome doctor!  Here is a picture:

 

 

 

Another visit I wanted to make was to the 11th floor where I was hospitalized for my stem cell transplant.   Wade and I got off of the elevator, went around the corner, and the flood gates just opened right up!  I experienced a lot of emotions that I was not expecting.  I was just hoping to see Jerusha or Mara, my nurses!  I didn’t get to see them, but I unexpectedly ran in to Alison Gulbis, my very first PharmD whom I love!  She was making rounds up there.  I got to see a photo of her baby girl, who is beautiful just like Alison!    Alison is extremely good at her job.  She helped me out of some bad times with good meds!  Thank you Alison!

 

 

 

The month of August is Houston Restaurant Weeks, which is a great thing.  You can eat at very expensive restaurants for $35.00 per person with $5.00 going to the Houston Food Bank.  Three or four courses with several choices.  It is a great way to try new places to eat, especially the pricey ones!  And to help the hungry.  Last year this program raised over $800,000!  That’s exciting!  We tried Brenner’s on the Bayou with friends Lucy Richardson (Media Specialist at MD Anderson) and John Moffett.  It was great fun!  We also tried III Forks which is downtown, with friends Patti (my bone marrow biopsy nurse) and Richard,  it was delicious!  And we had great Mexican food at Sylvia’s with Kelli.  Fun times!

This week I am in the throes of chemo…my 11th cycle.  My fatigue gets unbelievable at times, but the worst side effect this time is that my teeth are extremely sensitive.  It feels like every single nerve is exposed and screaming!  Since I will be finished with the Vidaza after 12 cycles, I’m not griping because I’m nearly there!  There was a time around the 8th cycle that I thought I couldn’t make it.  I’m so glad I didn’t give up.  The only reason I kept on keeping on was because I didn’t want the first 8 cycles to be in vain!  And Dr. Hosing felt like this was an important thing for me to do to help increase my odds of NOT having a relapse.  Almost there!

There are definitely ups and downs in cancer treatment, and I feel like I am finally in the ups!!!

Be kind, smile a lot, and love the one you’re with:)

 

 

08-19-2012 I MET MY DONOR, ROBERT!

What an awesome week I had!  On August 8th and 9th, Wade and I were in Houston at MD Anderson for my appointments.  My appointment with Dr. Hosing went very well!  We enjoyed dinners with friends and family, visited the 11th floor where I was hospitalized for my transplant, ran into Alison Gulbis, my PharmD, and had a visit and hug with Dr. Garcia-Manero!  It was all so very good!  I will blog about all of this next week and post some photos.  I got some great photos I will share!

We then flew to Philadelphia to meet Robert and his family.  Our flight was delayed due to weather, but we finally arrived at the hotel (The Inn at Penn – which is next to the Penn campus – a great place to stay).  The Gawlas family was waiting for us there.  It was an unbelievable experience to meet Robert and his family!  He was there with his parents, Bob and Cathy, brother David, and sister Katie.  I had waited a long time for this!  Yes, I was teary…happy tears to finally meet the young man who had saved my life!  It was an indescribable experience!  There are no words to describe it!  We went to dinner at Fogo de Chao and it was delicious.

                                                                                                                  Left to right:  David, Robert, Katie, Cathy, Bob, me and Wade

                                                                                                                                                                                                                                        ROBERT!

The next day, Robert gave us a tour of the University of Pennsylvania campus which is a beautiful campus.  The University is the 4th oldest in the United States, founded in 1740 by Benjamin Franklin.  We ended up in the football stadium where Robert plays football.  This will be his senior year.  Wade and I hope to go to one of his games:)  Like when Penn plays Harvard since his brother David plays football for Harvard!

                                                                                                                                                                                                                       The Love Sign UPenn campus

That afternoon we saw the Liberty Bell, Independence Hall, and the US Mint.

                                                                                                                                     The Liberty Bell, Robert and Katie with Independence Hall in the background.

After a little rest, we loaded up and went to eat Philadelphia Cheese Steak sandwiches on our way to a Phillies game.  Geno’s and Pat’s are across the street from one another and in big competition to have the Number One Philly Cheese Steak so we got sandwiches from both places and tried them both.  You gotta order them with “Cheese Whiz wit” or “Cheese Whiz without” (grilled onions).  They were delicious, well worth the wait!  You definitely have to get Cheese Whiz.  It just melts into the steak!  Notice the lines and the traffic in the pictures!  We voted and half of us liked Geno’s best, the other half, Pat’s.  It was a toss up!

                                                                                                                         This is a mural on a brick building next to Geno’s.  Pretty cool!

Visiting all of the major league baseball parks is on my bucket list, and Robert (not knowing this) suggested we all go to the Phillies/Cardinals game Saturday night.  I was thrilled!  It’s a great ballpark.  I especially liked the Liberty Bell that lights up anytime the Phillies hit a home run.  Unfortunately we didn’t get to watch the bell do its special thing that night…no home runs!  Robert’s girlfriend, Teresa, joined us for the cheese steaks and game.  It was lots of fun!

                                                                                                                                                                                                Bob, David, and Cathy

                                                                                                                                                                                                                         Robert and Teresa

After the game it was time to say goodbye which was very difficult.  There were lots of tears from me and lots of hugs.  I was not wanting the weekend to be over!   It truly was an amazing weekend spent with the most unselfish, giving person and his wonderful family, the one who gave me my life back.  Thank you Robert!  And thank you Cathy and Bob!

A few final thoughts:  Roberta, from Be the Match, the bone marrow registry, told me that Robert and I would be a lot alike since we have the exact same DNA.  Over this weekend visit it became apparent!  To be so different and at the same time share the very same DNA is mind blowing.  One thing is for sure…the Gawlas family felt like family from the very beginning when we met.  It was never awkward or uncomfortable.  It was more like discovering a missing link in my life!  And there is definitely a special connection there!  I hope they will always be a part of my life!  I will be forever thankful for Robert!  I love you Robert!  You are AWESOME!

Please get into the bone marrow registry at BeTheMatch.com so that you can possibly save a life just like Robert did!

06-25-12

New post up on MD Anderson Cancerwise!  Here is the link:   http://www2.mdanderson.org/cancerwise/2012/06/my-donor-and-life-saver.html

It is also posted on MD Anderson Cancer Center on Facebook:  http://www.facebook.com/MDAnderson  .  There are some awesome comments here for my stem cell transplant donor, Robert Gawlas!  Go check it out!

To catch up a little bit, I made it through Round 9 of my Vidaza chemo…that means only 3 more to go.  I am beginning to think I can make it all the way through!  Tiredness, loss of appetite, and swelling of my legs and feet are the main side effects.  Thank goodness for flipflops!!!

Wade and I are looking forward to next weekend…we will be in Dallas for the Texas Rangers game on Saturday night.  One of Wade’s colleagues has given us tickets to watch the game in his box, so that will be exciting!  I will try to get some pictures to post!  Speaking of pictures, here is one of my most favorite people in the whole wide world, who we saw the last time we were in Dallas.  We’ve been hanging out with him occasionally for several years now.  He plays the piano at the piano bar at Del Frisco’s Steakhouse in Dallas.  We popped in just for a few minutes to say hi, and can’t wait to go back when we can stay longer.  Les is amazing! And incredibly talented!  I love you Les!  If we don’t see you this trip, we will be back soon!

 

Lazaranda Mexican Seafood Grill on Beltline in Addison is a casual, fun place to eat Mexican seafood in Dallas.  It is authenic Mexican food, not Tex Mex.  I read that the owner came from Monterrey, Mexico.  The food  is very different, fresh, and yummy!    Great margaritas too!

                                                                                                                                                                                                                           Excellent salsas

Grilled fish with house marinade, rice, and fresh vegetables

Tacos, black beans, and guacamole

 

 

My dear friend who posts my blogs on MD Anderson Cancerwise, Lucy, is interviewing Dr. Garcia-Manero today for a future blog post.  I was so very excited!  He is considered to be the number one authority on Myelodysplastic Syndrome in the world!  And I especially love him because he was my first doctor at MD Anderson,  he truly cared for me, and tried all options before sending me to my sweet Dr. Hosing in the Stem Cell Transplant department.  With Robin Roberts’, of ABC’s Good Morning America, diagnosis of MDS, I think it will help to bring awareness about this disease that most people know nothing about.  Whenever that post of Lucy’s is published, I will post a link.  I love Robin’s coordinating and sometimes sparkly PICC line covers!

Until next time, love each other!

Holly

 

 

 

05-24-2012 Happy First Birthday!

Wow, what an emotional day today has been!  First of I have received some beautiful cards, gifts, comments and calls that have just made my day!  It has truly been an amazing journey.  I am so thankful for all of my doctors, nurses, support people, and friends at MD Anderson and Harrington Cancer Center that have lovingly cared for me.  And for my family and friends who were there every step of the way.  I just can’t describe the feeling of having another opportunity for a normal, healthy life!  I remember so well the day I was told that without a transplant I would probably have 6 months to a year left. And here I am one year out!!!!!  Thank you to my donor!  The amazing 20 year old  young man who so unselfishly gave his stem cells to give me another chance.  Oh how I love him!

This is what a stem cell transplant looks like.  I am posting a picture of the bag that I received one year ago.  I was a very sick person that day, but joyously happy.

Bob and Camille Beville, very dear people from Hereford, came by my room and donned the robes, masks etc. to see me the day of my transplant.  Bob was there for a check up…he had been treated at MD Anderson a few years ago for bile duct cancer and was pronounced CURED that day!  That was so encouraging to me!

Just a few more pictures that encourage me to keep walking on this journey, even when it gets difficult.  My grandchildren are awesome!  I missed out with them last summer, this summer we are going to make up for it!

I just got an email from Glo, my mother-in-law.  She said not everybody gets to celebrate 2 birthdays a year!  I love that!  Here are some of the gifts I have received.

From Julie Butler who is also a stem cell transplant survivor, and her mom Charla

From Lucy Richardson, my friend who publishes my posts on MD Anderson’s Cancerwise blog

Beautiful card-how did he find such an appropriate card?!, iPod touch, and cool wooden charm from my husband, Wade

In honor of Robin Gibbs who lost his battle with cancer this week, I downloaded “Bee Gees Number Ones” and have been listening to it today….I love it. It brings back lots of memories!   Hope everyone has a safe, fun, Memorial Day weekend!

Holly