My donor, Robert, was contacted by Be The Match bone marrow registry that he is a potential donor again!!!!!!!! He will have blood tests done on Monday. His sweet mom, Cathy, said he must have Superman stem cells! I totally agree…he is my SUPER HERO! And of course, he wants to do it again! Way to go Robert!
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:)
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.
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!
That afternoon we saw the Liberty Bell, Independence Hall, and the US Mint.
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!
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!
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!
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!
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!
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!