Check out my 2 part blog post on MD Anderson Cancerwise – it chronicles my stem cell transplant at MD Anderson last year.
Hope you all have a wonderful weekend!
Be kind and love one another!
Just a quick note to let you know that I have a new blog post up on MD Anderson Cancerwise site, and most importantly to let you know the link for a very exciting news conference by MD Anderson Cancer Center in the morning at 10:00 a.m. CDT. I don’t know what it is about because it is a surprise announcement, but I feel like it is going to be very exciting news! I am so thrilled to be here for this! I will blog about it all as soon as I get home.
Hope you all have a great Friday!
Live news conference link. http://bit.ly/PE0O5
Cancerwise blog post. http://bit.ly/VgkCk6
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:)
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
Have a great weekend!
Weekly Photo Challenge: Purple
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!
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.
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!
Here is the unedited, uncut, original version of a future post of mine on the MD Anderson Cancerwise blog site. Sometimes the editing process takes out some of my silly comments and content!
My husband and I arrived in Houston a week early so we could get him moved into an apartment and also because I was scheduled for several tests that week at MD Anderson. One of the most helpful things that happened that week was attending a stem cell pre-admission class. In this class the nurse told us lots of information about our stay in the hospital….everything from the admission to the dismissal. It was every informative. Other appointments that week were a CT scan, anesthesia assessment, transplant coordinator visit, bone marrow biopsy, echocardiogram, subclavian catheter insertion, complete pulmonary function test, social work visit, business office appointment, and appointment with Dr. Hosing, my stem cell transplant Doctor. I was admitted on May 17, 2011.
In the class I mentioned above, we were told to check in later in the afternoon because that is usually when rooms become available. My husband’s mother had passed away 4 days earlier, so he was in San Aangelo with his family. My daughter and granddaughter helped me move into my room. Before we headed for the hospital we stopped to eat my “last meal”. I knew I was about to have dietary restrictions! When we arrived at admissions, everything was ready and it only took a few minutes. Going up the elevator to the 11th floor was a very strange feeling….knowing that I was beginning a very important journey and that it would be several weeks before I would be coming back down the elevator! Plus we had a large suitcase, clothes, and a wheelchair full of pictures and another stuff I needed!
The room was small but nice. It had 2 chairs, a bedside table with drawers, a built in closet with a desk, and most importantly a window! The window and my computer were my links to the outside world! The view outside my window was of St. Luke’s and The Heart Institute. The helicopter landing pad was right across from my room. We watched them bring in many patients and also coolers (?) with organs inside. Memorial Day was the busiest weekend.
Besides the usual pajamas, robes, slippers, and toiletries, I took sweat pants, tee shirts, hoodies, a pair of tennis shoes, my iPod, family pictures, books, my fuzzy blanket, my latest crochet project, my computer, a folding table to set it on, and a folding chair to use with the computer (the chairs already in the room were the reclining type). Please don’t be afraid to bring all of your favorite things! Even though the room is every small, you will find a place for your things. My husband arrived the next day and helped me get everything all set up.
One of the cool programs that I participated in was the M&M exercise program. On the first or second day you are there, you are asked to walk as fast as you can while they time you and measure distance. Every day you are encouraged to walk as much as you can. There are different colored circles cut out of construction paper that you punch into and out of a time clock each time that you walk so that they can keep track of the time you spend walking. You get to tape these colorful paper M&Ms on you door and every week they are picked up and prizes are given out. Dn’t laugh…this is a big deal! I won a bandana, and on the last day before my dismissal I received an M&M tee shirt. They ordered an orange tee shirt just for me since it was my favorite color! This program gets to use the M&M logos and colors, and it’s purpose is to discover the positive effect of exercise on stem cell transplant patients.
The staff was amazing! In a future post I will write about the staff, treatment, transplant, and events leading up to my dismissal. The most important and awesome thing I want to stress now is that I was always treated with the utmost kindness and respect which makes everything so much easier to bear! MD Anderson IS number one!
Hello Everyone! I’ve had the dead head for a while and haven’t felt creative enough to blog, but I’m getting my mojo back now. Yay! I am not one of those that feels the need to blog everyday, especially when I don’t have anything interesting to say! Here’s what has been going on. I had my appointments at MD Anderson last month and learned that I have graft vs host in my gum tissue and possibly in my liver. The only way to determine if my liver problem is graft vs host would be to have a needle biopsy, neither my team nor myself is interested in that at this point. Instead they are treating me as if it is graft vs host, so it is back on the steroids again, “liver pills”, and prescription mouthwash for my mouth problems. This news about the liver was a big downer for me. However I do have weekly blood draws to check my liver function and it’s at least not getting worse – sometimes it is improved. I will go back in a week to be checked again. At the same time I had a flare up with the deep vein thrombosis, and a round of chemo with side effects that were worse than usual. Yes, I was about to throw myself a pitty party! Things are definitely much better now…. I am very thankful!
The fun things about my trip to Houston were the two video interviews I had while I was there. One for MD Anderson’s website for new patients, and the other a documentary on The Rotary House. I was soooo nervous, but Jo was awesome at the interview process, putting me completely at ease. And so was James, the videographer. They were awesome! When I get the DVD for the MDA piece I will post it here. The Rotary House piece will be ready later in the summer.
Here is the link for my last MD Anderson blog post: http://mdanderson.org/cancerwise You can then scroll down to my post or search Holly Easley in the search bar.
Yesterday was Wade’s birthday, one of those ending in “0”. We had a great day together! I love that man! We are in Saint Louis while he is attending a short business meeting. We will go home tomorrow.
Thought for today: (This one is for me!) “One of the things I learned the hard way was that it doesn’t pay to get discouraged. Keeping busy and making optimism a way of life can restore your faith in yourself.” Lucille Ball