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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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.

09-26-12 “Together We Will End Cancer”

“THE TIME IS NOW.  TOGETHER, WE WILL END CANCER.”  At the news conference I attended, Dr. Ronald DePinho, president of MD Anderson Cancer Center, announced the Moon Shots Program and introduced the teams of doctors and the selected cancers they are going to begin with.

*  Triple-negative breast and ovarian, which are linked at the molecular level

*Leukemia (AML/MDS)  My Dr. Guillermo Garcia-Manero is on this team!  I just KNEW he would be involved in something this great!  He is the BEST!

*Leukemia (CLL)

*Lung

*Melanoma

*Prostate

In his speech, Dr. DePinho made the analogy of President Kennedy in his famous speech saying, “We WILL go to the moon.”  And they did.  “Together we WILL end cancer.”  And they will!

This will be a very ambitious program to reduce cancer deaths.  Lucy Richardson so graciously invited me to attend the conference and a breakfast beforehand.  It was wonderful to visit with other survivors and bloggers.  (And everybody LOVES Lucy!  She is amazing!)  It was a very emotional experience for me as a survivor!  After the news conference I was asked to be video interviewed and every single time I talked about Dr. Garcia-Manero or my grandchildren, I happy cried!  To think that my children and grandchildren will not have to go through what I am going through is beyond words!  I don’t have to rely on hope alone…this Dream Team of doctors is going to make cures and preventions a reality!  Globally!  Shoulder to shoulder!

Wow…this is incredible news!

A few facts from Dr. DePinho’s speech:

* Cancer is a problem that begins early in life.  Early childhood sunburn puts you at a risk for melanoma later in life.

* There are more tanning beds in most major American cities than McDonalds and Starbucks.

* Obesity by 2020 will surpass tobacco as a major driver of cancer.

Prevention is the key.

After the news conference we went over to the main building for a few minutes to see my friend Patti (!) and pick up some paperwork.  I always get this indescribable feeling like I am back at home when I go to MD Anderson.  I guess it is because it was such a life changing and life giving experience for me.  I will  forever be thankful!  What a special place filled with special people!

My sister Jan went with me to Houston and we had a great time.  I was thrilled she was able to go with me to the news conference!  Girl trip…loved it!

This week I am in the throes of my final (12th) cycle of chemotherapy after having a stem cell transplant last year.  I can’t tell you how happy I am to be almost finished!  Just 2 more days:)  There were a few times when I thought I couldn’t go on any longer…so happy I persevered!  Vidaza will hopefully decrease my odds of a relapse of myelodysplastic syndrome.

Thanks to all of you who have been asking about my dad…he had back surgery to straighten up his back which was causing him excruciating pain.  That surgery was successful.  YAY!  But he developed a hematoma and had a second surgery for that, and then another hematoma was removed a week after that.  Three surgeries in three weeks.  Needless to say,we made sure he came home from the hospital WITH the drain tube after the last surgery.  He is having pain in his knee and leg, so he had an MRI yesterday.  Results tomorrow.  We are so hoping it is the healing process of the nerves where the hematomas were.   He has endured so much…send him big love!

Dr. DePinho at the breakfast

Two of my most favorite people, Lucy and Dr. Garcia-Manero

My sister Jan

                                                                                                                                    We got to sit on the front row!!

A final thought…Robin Roberts, I really wish you were at MD Anderson Cancer Center!  My thoughts and prayers are with you!

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!

08-03-12 New Post on MD Anderson Cancerwise

Hello everybody!

Thanks for not giving up on me!  Things have been busy, brain has been fuzzy, but I will have news to report and will blog soon!  Meanwhile, check out my post that went up on MD Anderson’s Cancerwise this morning about Dr. Garcia-Manero.  I’ve mentioned him quite alot here on my blog.  Every time I write about him, I find that words are inadequate to express this special man!  Go check it out!

Here’s the link:  http://www.facebook.com/MDAnderson?ref=ts

http://www2.mdanderson.org/cancerwise/2012/08/thanks-to-dr-garcia-manero-i-no-longer-have-myelodysplastic-syndrome-1.html

Have a great weekend!

Holly

Weekly Photo Challenge:  Purple

                                                                                                                                                                                                                                   Purple Flowers