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

10-24-12 Be The Match Donor Drive

Last year after I received stem cells from my donor Robert, Wade said he would like for us to sponsor a donor drive in Hereford and we finally got to do that last Wednesday!  Roberta and Julie from Be The Match came to Hereford from Fort Worth to conduct the drive.  Two newspaper articles, 3 radio interviews, lots of flyers, and getting out to talk to people really helped to get people there.  There is a misconception about the whole process being very scarey and painful.  Hopefully we raised some awareness about the procedures and the need for people to get into the registry.    The new age requirement of 18 to 44 years old prevented a lot of people from becoming donors.  We ended up getting 49 people registered and a sizable amount of monetary donations raised for Be The Match!  For the first donor drive in our community, we were extremely pleased!  The bank employees grilled German sausage for free sausage wraps, and each person who registered got a free t-shirt.  Being involved with a project like this makes me realize how awesome our community is to show support.  I am so grateful to every person who became a donor or contributed money, and to all those who helped in any way with the drive!  You could be the one to save a life…just like Robert saved mine!

Jonathan, our first donor!

Julie, yours truly, and Roberta

Wade and Danny after cooking 300 sausages!

Awesome t-shirts!

 

 

After I got home that afternoon, I emailed Erin Frazier, my wonderful PA at MD Anderson about some issues I was having.  I had quit taking my sirolimus (immune suppressant) about 2 weeks earlier.  Dr. Hosing had given me permission to try getting off of the sirolimus since I had already cut back on them for 2 months and had no problems.  She told me to get my blood tested every 2 weeks to watch for liver GVHD since I had that problem before.   Well….I had GI problems and my blood test showed that my liver function had gotten worse.  In fact I was pretty sick by Thursday.  So Erin told me to get back on the sirolimus, and I have been feeling better every day.  Yay!  I will go back to MD Anderson in February for my check up and a bone marrow biopsy and will go from there.  I guess I am through with “rushing it”!

My dad and sister Jan, were here for the weekend.  We had a great time visiting relatives, friends, family!  Here is a picture of my wonderful Daddy with my sweet Grandkids!  What a great way to end this post!

Until next time,

Holly

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!

09-20-12 New Blog Post and News Conference

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!

Holly

Live news conference link.  http://bit.ly/PE0O5

Cancerwise blog post. http://bit.ly/VgkCk6

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

06-27-2012 Austin is street food heaven!

Wade and I got to spend a few days in Austin last week, and we always love the Austin scene!  Particularly the food!  The street trucks and trailers have increased dramatically since our last visit to Austin.  Needless to say we ate some great street food!  All of these shown are in the South Congress or the “SoCo” area.

Crepes Mille…(and Lockhart BBQ next door)

Ms P’s Electric Cock…

The famous Mighty Cones…delicious fried chicken breasts, slaw, and a chipotle dressing inside a tortilla that is placed in a paper snow cone type wrapper.

Hey Cupcake! … have your cupcake injected with whipped cream!

.

AND OUR TWO FAVES THIS TRIP…

Gourdough Big. Fat. Donuts.

                                                                                                      Wade had the Flying Pig, his donut was covered with bacon and maple syrup.  I had the Sara’s Joy, a donut with coconut cream, chocolate icing, and shredded coconut.  These donuts are huge and hugely wonderful!  They are fried when you order.

This is Torchy’s Tacos

I don’t think I have ever had a better taco, and their salsa and queso are to die for!  There is a reason this place is ranked #9 out of 1561 restaurants in Austin on Trip Advisor!  Wade had their most popular taco, The Green Chili Pork, slow roasted pork carnitas simmered in green chilies, topped with queso fresco, cilantro, onions, and a wedge of lime on a corn tortilla with tomatillo sauce.  I had The Crossroads, smoked beef brisket with grilled onions, jalapeno, cilantro, jack cheese, and avocado served on a corn tortilla with tomatillo sauce.  On a second visit (!) I had The Baja Shrimp with grilled shrimp, cabbage slaw, pickled jalapenos and onions, queso fresco, mango, cilantro and lime on a flour tortilla with chipotle sauce.  We also tried the street corn, fresh roasted off-the-cob corn topped with ancho aiolo, queso fresco, cilantro, and dusted with New Mexico red chili powder.  It is amazing!  Besides the trailer, they have an eat in restaurant nearby.  Look for this little devil..Damn Good Tacos!

A fun place to get a great cocktail is at Lambert’s at 401 W. 2nd St.  The 2nd street area has some cool shops and restaurants.  Lambert’s has a great happy hour at 5:00, serving delicious bar food half price along with $2 off their drinks.  I ordered a Sangria Blanco which is Vino Verde, peach brandy, blackberries, raspberries, blueberries, lemon, orange, and lime slices.  It was dangerously delicious!  Demetrius is the most awesome bartender!  Make sure to go when he is there.  Lambert’s serves what I would call fancy barbeque, and has live music.

Sangria Blanco

And of course, how can you go to SoCo in Austin and not drop into Allens Boots?!  There are more Old Gringo boots here than you have ever seen in your life!  Rows and rows.  And some pretty cool clothes too!

We left Austin and flew to Dallas.  That will be a post forthcoming!  Meanwhile, smile a lot!

Holly