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,


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:)



05-18-12 Dr. Chitra Hosing and Erin Frazier, P.A.

*I’m finally getting back to the blog…I started this blog a few days ago, and decided to take a few minutes to finish it.  I started it with good news, but am ending with sadness*.

It has been a whirlwind, but thanks for being loyal followers!  In fact a couple of weeks ago my counter registered over 20,000 hits!  That made me so happy!  I totally appreciate all of the hits, comments, interest, and concern.

Last week Wade and I went to Houston for my appointment with Dr. Hosing.  As usual, I looked forward to my appointment, hoping for good news and getting to see my Doctor and P. A. again.  My appointment went very well…liver function was improved, I can start getting my childhood immunizations as soon as I am off Coumadin, and I don’t need to return for 3 months!  GVHD is still in my gums and I will treat it with mouthwash they prescribed for me.  At the next appointment in 3 months I will maybe be able to start weaning off of my sirolimus  if I have no problems with GVHD.  This is great news!  Another exciting thing was that I signed forms to be sent to my donor to find out if he wishes to remain anonymous or would agree to meet me!  My first transplant birthday is next week, May 24.  What a milestone!

I always feel like I am going back home when I make these treks to the stem cell transplant department at MD Anderson Cance Center.  I feel like I am in the best care possible…I have so much love and respect for my Doctor, Dr. Hosing, my PA Erin, and my nurse Kelli, whom I forgot to take a photo of.  I will try to remember next time!  These are amazing women who truly care!  Dr. Hosing has gotten me safely through some pretty rough times.  And sweet Erin is always available to help when issues crop up along the way.  Top photo is me with Dr. Hosing, bottom photo is me with Erin (and my new head of hair!)  I am so thankful for these ladies and love them dearly.  They truly are a blessing to me!

A lot of events have happened along the way since this appointment 9 days ago.  Here is a brief rundown.  I  will blog more about specifics later.

5/10 – flew to Dallas

5/11- Wade had a day long preventative diagnostic physical at the Cooper Clinic in Dallas in honor of his recent 50th birthday.  They found his 3rd Castleman’s tumor in his chest, a rare usually benign tumor.  Most Doctor’s have to go look this one up!  His brother also had one, and his daughter, Shelby, has had one.

5/13 – A Happy Mother’s Day…back in Hereford

5/14 –  Appointment with Dr. Ravipati in Amarillo and then plans to start cycle 9 of vidaza chemotherapy.  I had a mild sore throat that morning and a lower white blood count, so Dr. Ravipati ordered a neupogen shot for that day and the next and postponed chemo until next week.  I couldn’t understand this sore throat and delay.

5/15 – back to Amarillo for another neupogen shot. This morning I got a call from my sister, Jan, that my mother’s health was deteriorating rapidly.  She has been on home hospice care for 3 weeks.  I then realized it was another “timing” issue, possibly like the one I described in my Colby Blog.  I now understood that my mild sore throat that went away quickly had freed up my week to be in Tyler.

5/16 – flew to Tyler to be with my family and my Mama.  We remain by her bedside.  We have shared so many wonderful memories…and lots of tears.

5/18 – my plans are to fly home tomorrow.  Please pray for my family and especially my sweet Daddy who is so very sad.  He has been with my mama since they were 7th graders.  They have been together for over 73 years and are a huge inspiration to all who knew them.

I will blog again when I can.


5/18/2012 – 12:30 pm – My Mama is now in the arms of Jesus.  She was the very best Mom and I love her so very by much.  We will all miss her.  She was a beautiful, gracious, loving example and influence to many.

“In this life we cannot do great things.  We can only do small things with great love.”      Mother Teresa